Annabelle Grace Flower Summers

Super Girl!

2011-11-05T16:10:00.000-07:00

Yes, our Annabelle was SUPER GIRL for Halloween this year. Halloween was a lot of fun and Annabelle quickly learned how to say "Trick or Treat" and "candy" when she approached the door. Most of the time she would just say candy and smile. She really was super cute.

Click HERE if you would like to see more pictures of the family from Halloween 2011

We didn't actually carve our pumpkins until the week after Halloween. Oh well. Better late than never (right?). As you can see the kids didn't mind when we did it. They were just glad to do it and yes, Annabelle now thinks it's okay to sit on the table - oops!

The awareness project - A letter to the Editor

2011-10-12T07:14:00.000-07:00

One of my good friends Colleen, came up with a great idea to draft a simple letter about Spina Bifida to help spread awareness and make it available to anyone who was interested in submitting it to their local paper. The Spina Bifida community is very proud and feels strongly about getting the word out about our wonderful children. I loved her idea for several reasons - one being that it wasn't too time consuming. I love to come up with great plans or ideas for things I want to do, but unfortunately executing them seems to be a bit harder for me. There just doesn't seem to be enough hours in the day to do all that I want to do. But thankfully this was a super easy one. So last night when I was supposed to be sleeping I submitted my "Letter to the Editor" to eight local newspapers. I'm really hoping to get at least half printed. It's a short letter (see below) since most papers require it to be under 300 words but the idea is to get people talking about Spina Bifida. Talking about what it is and what it isn't.

To the Editor:

October is Spina Bifida Awareness Month. Spina Bifida is the most common permanently disabling birth defect, affecting about one out of every 1,000 newborns in the United States.

What is Spina Bifida? It's a birth defect that results in the spinal cord protruding from a baby's back. The back can be surgically closed before or after birth, but damage to the spinal cord can cause paralysis, hydrocephalus (fluid on the brain), bowel and bladder issues, and other challenges.

What causes it, and how can it be prevented? No one knows what causes Spina Bifida, but women can reduce their risk by up to 70 percent by taking 400mcg of folic acid daily for three months prior to conception. Every woman of childbearing age should take a daily multivitamin.

What are people with Spina Bifida like? There is a wide range of outcomes. Some are barely affected, some are severely disabled, and most fall somewhere in between. Some use wheelchairs; others use braces, crutches, or walkers; and some walk independently. Most have normal intelligence. Spina Bifida is only one part of them and does not define them. They can become teachers, doctors, musicians, athletes, or anything they want to be.

What do you do when you see someone with a disability? Instead of looking away, make eye contact and smile. Instead of shushing children who ask questions about a wheelchair or other differences, encourage children to ask the person about it, or answer with: "Some people's legs don't work the same as yours, so they need help to get around." Emphasize people with disabilities are more like everyone else than they are different.

If you would like to learn more about Spina Bifida, visit www.spinabifidaassociation.org.

Nicole Summers

Long Beach
http://babygirlsummers.blogspot.com/

If only the Dr.'s could give a picture of Annabelle (or any of our many, many SB buddies) when giving parents the diagnosis of Spina Bifida for their unborn child. It really would make the rest of their pregnancy so much easier. I am truly a very lucky lady to have Annabelle as my daughter. I'm not just saying that - it's really true. My life is good and it is so much better because Annabelle is in it. Just look at her sweet face.

I am inspired by her strength and determination on a daily basis

I read this today on my good friend Joanna's Facebook page and I thought it was perfectly worded so I had to share it. Love you Joanna!

"SPINA BIFIDA AWARENESS : You should be aware that having a child with SB may cause increased motivation to help others, a new found perspective in times of trial, a desire to enjoy the little things and commitment to change the way the world defines "disability".

Studies show that raising a child with SB will induce strong feelings of gratitude for even the simplest of milestones and produce a willingness to do anything, talk to anyone, try any method necessary to make life better for your child.

Side effects include feelings of worry, fear, uncertainty, and anger but are tempered with love, faith, determination and hope.

Having a child with Spina Bifida is not easy...but loving one is". ♥

Annabelle is VERY loved!

Helping to spread awareness

2011-10-08T15:21:00.000-07:00

Last week I was asked by two friends to submit a little something about Annabelle for their blogs. They are both spotlighting children with Spina Bifida on their blogs as a way of spreading awareness during October, which is Spina Bifida Awareness month.

Cassie asked that we submit a picture and a little blurb about what we wish we knew "then", back when we were pregnant and so worried that we know now. I used this picture from Annabelle's 2nd birthday since it's currently my favorite of her.

I wrote the following: "As a mother I knew deep down that regardless of her challenges she would be a wonderful addition to our family. What I didn't know then was how amazingly happy she was going to be. She is truly a happy, loving little girl. Her smile and laugh are infectious. She has a genuine love for life. She doesn't focus on what she can't do but on what she can. She has brought more joy and happiness into our lives than I can put into words." I could have written so much more but decided to keep it short.

If you haven't had the opportunity to check out Cassie's blog and all of the other amazing children please do. These beautiful children and their families are so inspiring.

Karen wanted a silly a picture of Annabelle and for me to describe her in just three words.

Here's the picture and words I came up with. It was hard to narrow it down but I do like what I chose.

Please take a peek at Karen's blog to see all the adorable children she is profiling as well as the in depth descriptions about what Spina Bifida is and is NOT. She's got some great information there.

Spina Bifida - what it is

2011-10-02T08:00:00.000-07:00

In keeping up with Spina Bifida Awareness Month I wanted to provide a little background on what Spina Bifida is for those that aren't yet aware.

Spina bifida is the most frequently occurring permanently disabling birth defect and the most common Neural Tube Defect. It affects approximately one out of every 1,000 newborns in the United States.

Spina bifida results from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Surgery to close a newborn's back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.

Because of the paralysis resulting from the damage to the spinal cord, people born with spina bifida may need surgeries and other extensive medical care. The condition can also cause bowel and bladder complications. A large percentage of children born with spina bifida also have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called "shunting" which relieves the fluid build up in the brain by redirecting it into the abdominal area. Most children born with spina bifida live well into adulthood as a result of today's sophisticated medical techniques.

Although Annabelle's spina bifida makes some aspects of her life a little different than others these things just become her normal. As you can see she really is just like the rest of our silly family but with some "extras".

*picture taken 8-21-2011

AWARENESS

2011-10-01T08:05:00.000-07:00

October is Spina Bifida Awareness month.

I think everyone affected by SB has their own thoughts on what "awareness" is and how best to get the word out about Spina Bifida. I hope to share some of my thoughts on loving and living with someone who has Spina Bifida over the course of the month.

Sadly, I am very aware that I haven't blogged in over a month but I wanted to start the month off right. So for today it will be short and sweet just like our Annabelle.

Just in case you weren't AWARE I love this girl with all my heart.

Just in case you weren't AWARE she has two of the proudest big brothers who would do anything for her - no joke, she is their princess.

When you or a family member has Spina Bifida it makes you keenly AWARE of and also appreciate what matters most in your life.

We are AWARE how blessed we are!

Balancing Act

2011-08-21T09:17:00.000-07:00

As this week comes to a close I feel its necessary to balance out my emotions. Let me explain a little. It's been an eventful week around here and I think if I wanted to I could probably make a case that it has been a bad week. I'd say there have been enough "bad" or disappointing moments to support that claim. But on the other hand there have also been some really good and inspiring moments. These are the moments that I want to stand out about my week. These are the moments that won't allow me to call this a bad week.

Here's a quick run down of some of this bigger things that happened this week:

On Monday, Annabelle's g-tube button popped out. Not a great moment, or my best moment. Click HERE if you haven't read that post yet :-). I beat myself up pretty bad about not reacting as I would have liked in the situation. The great news is that I wasn't alone when it happened - Branden was there and he acted properly. Now I feel totally prepared to handle it if God forbid it happens again.

On Tuesday, We got the results from Annabelle's stomach emptying test that she had last week. This was the last of two tests performed to help us determine why our sweet girl doesn't eat. The first test was the Acid Reflux test. Those results came back negative. The results however for the stomach emptying test came back positive. So the official diagnosis is Gastroparesis or Delayed Gastric Emptying. Click HERE if you would like to read more about this condition.

Here's my sweet girl "reading" before they called her in for the test last week. Annabelle LOVES books and animals.

I'll be honest, I had mixed emotions when I got the results. I was sort of happy to know there was a real reason she won't eat. Don't get me wrong, I don't want Annabelle to have any additional medical conditions or have a need for additional medicine but at the same time it has been SO frustrating trying to get our sweet girl to eat. Now we know why. With the delayed gastric emptying her food moves through her digestive tract at a much slower rate that you and I. The assumption is that she always feels full, hence the reason she take 2-4 bites of something then says done with a cute little smile on her face. I naively was hoping it was a simple fix. Well, so far it hasn't been very simple. The Dr. prescribed Erythromycin which seemed simple enough but when I went to pick it up the pharmacy wanted to charge me $50. Okay, so if this was a one time prescription and if Annabelle didn't already have almost $100 each month in prescriptions than this wouldn't be that big of a deal. But that's not the case. This is a medicine she will need every month for a very long time and as I mentioned we are already paying $95 (to be exact) each month to cover her 3 prescriptions, daily probiotic and her iron supplement. We can not afford another $50 each month - that is another $600 per year! So this would be the "not so great" part of the story. I proceeded to spend Wednesday and Thursday fighting with the insurance company to consider lowering the monthly co-payment. I felt that I had a very good claim and wanted to file an appeal. Unfortunately, my "customer service rep" at the insurance company doesn't see it the way I do. The insurance company is NOT willing to work with me. They do not see that if we can get her eating we both won't be paying the hundreds of dollars each month for her feeding tube supplies. I'll admit they beat me down pretty good this week. They got me to raise my voice and to shed a few tears. But I'm done with that though - we all know that insurance companies are business and could care less about me and my family. They don't see Annabelle as anything more than a very expensive client.

So the GOOD part of this situation (I'm sure you were wondering when I was going to get to that), the part of this week I want to focus is not the greedy insurance company but on are the kind people that ARE trying to help me. The kindhearted nurse Vicki at the GI Dr.'s office and Charlie the caring pharmacist at Columbia Pharmacy. They are both going above and beyond to try and find a comparable drug that my insurance will cover at at $10 or $20 co-payment. These are people that see how hard we are working to take care of our family. When I thanked the nurse on Friday for all she was doing for us she told me that when her kids were little they both had high medical costs and she felt that no one ever went that extra step to help her so she was happy to help in any way that she could. She truly touched my heart.

On Wednesday, I was contacted by a lady via e-mail who stated that she and her husband were considering adopting an 8-day baby boy with Spina Bifida. I was honored that she reached out and I immediately offered to connect by telephone. We spoke for over 20 minutes and I was as honest and direct as I could be about life with Annabelle. The reality is Annabelle is wonderful - she's smart, happy and an absolute little love. Life is harder yes, but she is SO very worth it. I was honest about cathing and therapies. We talked about the g-tube although those aren't typical for most kids with Spina Bifida. She was a very nice woman and I enjoyed our conversation. I hung up not really sure if I helped her at all but prayed that her heart would guide her properly. I figured she had probably pretty much made up her mind before we spoke but she didn't really let on. They have other biological and adoptive children but none with SB.

I'm happy to say there is nothing bad about this story! I received an e-mail from the woman on Thursday morning saying that she and her husband had decided to move forward with being presented to the birth mom. She asked that I pray for them and thanked me for all the info I had shared the day prior. On Friday I got another e-mail stating "he is ours!!! Birth mom said "I think they are just about perfect!". :). I cried!" It was such a GREAT e-mail to get. My heart was overflowing with happiness to think I played a small role in helping a sweet little boy find his forever family. I can't wait to hear his name and see his sweet picture on Monday after they sign the papers. I was once again inspired by good, kindhearted people.

I've realized that if financial troubles are the worst that I had to deal with this week than we are doing pretty good. So many families are dealing with much more than we are. Sadly, it felt like a day didn't go by this week where I didn't hear or read about the loss of a baby or a young adult being diagnosed with cancer or some other very scary disease. These are devastating things for families to go through. We are blessed, very blessed and I will make sure to work hard to not forget that in the moments that seem a bit overwhelming in the moment.

Having these three little loves to snuggle each day makes everything better

There's no doubt I can handle anything as long as I have the love of my family.

The calm after the craziness

2011-08-15T21:47:00.000-07:00

We had some craziness tonight I tell ya. Annabelle's g-tube button came out tonight! Yep, you read it right - the whole stinking button popped out. I am thanking the Lord above that it happened when Branden was home because I freaked out and was no help at all during the situation. I panicked and started crying but Branden was as calm as could be. Amazingly, he remembered everything they taught us almost 4 months ago at the hospital. Thankfully, our "in case it came out kit" was readily accessible and Branden jumped right into action. He had to insert a Foley catheter the open hole (where the g-tube button usually is), inflate the balloon which holds it in place with 5 ml of sterile water and then clamp it with medical tape (the directions say to use a rubber band, but you can't use rubber or latex around kids with SB due to allergies).

I quickly called the GI Dr. to get guidance and next steps. I had Branden talk with him so he could tell him exactly what he did for Annabelle. It was so proud that the Dr. said that Branden had did everything perfectly. I was shocked though when he said that the ER would not help us to put in a new button. WHAT??? Apparently, in the medical world this isn't that big of a deal and clearly not considered an emergency. He said that he would order us a new button because the balloon on hers had burst and was no longer usable and we could just come in tomorrow to have it replaced. At the time I was totally unclear how we would continue with her tube feedings and administering her medicines or even manage with this huge Foley catheter sticking out her belly. But now I know that it can all be done temporarily though this tube. We were able to give her Pediasure and her bedtime medicines through the tube before putting her to bed. The Foley is not as secure as her button and it is leaking a little bit but it will do until tomorrow.

Sadly, I was really shook up after everything was handled and calm again. Branden seemed pleased with himself (as he should be). Annabelle seemed fine - not in any pain and happy to be with her Dad. The boys were happy their sister was better now. The kids were pretty scared - mostly because of my reaction to the situation. Jack asked if she was going to die if she didn't get a new button tonight :-( Poor kid, I hate that his little heart had to even wonder such a horrible thing. I on the other hand felt horrible and totally unprepared to handle such a situation. I can't even imagine what I would have done if this had happened even 20 minutes earlier. Branden had literally just got home with this happened. We can assume (and hope) that I would have handled it since I would have had no other choice but I don't know. I was scared, really, really scared. I am still scared that it hasn't been replaced and I will have to "deal with it" until the Dr. sees her tomorrow. It's also no guarantee that he was able to get a button from the pharmacy. Unfortunately, they don't stock these things and we may have to wait until one arrives. The Dr. said if he is unable to get her one tomorrow he will insert a traditional G-tube (boo - this is an actual tube that will stick out of her belly) and we will have to wait until the new button comes in and then he will switch it out. I know I am just complaining now and should just be grateful we didn't have a bigger issue on our hands tonight.

I am so, so glad my wonderful husband showed amazing grace under pressure tonight. I pray that if it ever happens again I will be able to channel his calmness and help Annabelle half as well as he did.

Because I think every post deserves at least one picture. Here's a picture of Annabelle with her Daddy from yesterday. If you couldn't tell, she adores him. I think he's pretty great too!

Celebrating Annabelle!

2011-07-31T15:40:00.000-07:00

We couldn't have asked for a better birthday weekend for Annabelle. We've been celebrating non-stop since Friday and she's loved every minute of it!

HAPPY, HAPPY BIRTHDAY SWEET ANNABELLE!

Thank you for being YOU!
We LOVE you more than you could every imagine.

18 weeks to prepare

2011-07-28T21:21:00.000-07:00

That's how long I had to "prepare" for my life to change forever. We found out at 17 weeks that Annabelle would be born with Spina Bifida and Hydrocephalus. Then just 18 weeks later, two years ago today, July 28th 2009, I was at the hospital trying to stall labor a bit longer because I was only 35 weeks pregnant with a baby girl that would need immediate medical attention.

She only held out a little while. Annabelle entered the world at 2:10 am on July 29, 2009. If you would like to read more about Annabelle's entrance into the world click HERE.

Today has been a rough day. Now that everyone is in bed I am starting to think that it was more than just the "typical" struggles of having three kids (2 of them being boys!) aged 2, 4, and 6.

On the eve of my sweet girls birthday I know I should be filled with joy, happiness and thankfulness for the amazing girl that she is and for all the happiness she has brought to our family. I am all of those things (and more) most days, but honestly tonight I am feeling sad. I'm tired and a bit overwhelmed by the disarray my house is in and I'm premenstrual so that doesn't help the situation at all.

I'm sad about what we have lost
I'm sad for her current struggles and worried for her future ones
I'm sad that now she is older her differences are starting to become more apparent.
I'm sad that my baby is no longer a baby yet she has to crawl to get everywhere she wants to go

Yes, I'm having a pity party before we have the real party. Stupid, I know but it happens. I'm sad that I have once again let MY emotions take over the day. It started out a great day. I made banana pancakes (no she wouldn't even try them), we all played inside, then set up the slip in slide out back then the day just sort of fell apart and so did I.

Such a waste of a good day. I'm ashamed that my poor children had to see me cry today. They were confused and so was I. I'm glad to turn the light out on tonight and wake up tomorrow happy, thankful and ready to celebrate Annabelle for all that she is and all that she will be. Like I said these were my emotions today - not hers. She, as always (except when she's acting 2) was happy as can be.

This is probably the only thing she remembers from today. Here she is like a big girl listening to some tunes on her brothers "Ipod" aka Mp3 player :-) She was having a blast!

I know - she doesn't seem sad or struggling. No need to point out the obvious!

Thanks for loving me friends.
Thanks for not judging me and allowing me to be honest.
Thanks for not telling me anymore "how strong I am" because when I cry in private I don't feel so very strong.
Thanks in advance for lending a hand with my boys next time you see us since I've been a little hard on them and I feel bad about it.
Thanks for helping me celebrate my wonderful and amazing daughter tomorrow!

tough love happening here

2011-07-24T14:50:00.000-07:00

Confused?

Well, here is a picture of my sweet girl. This is Annabelle MOST of the time. A happy, fun energetic little girl who loves to smile for pictures.

Then there is this is this girl with the super sad face. Annabelle is not enjoying walking right now. We are really struggling and she is not making much progress right now.

So what's a mom to do? I don't know - this is really tough for me.

On top of this we (Branden & I, her PT, her Orthotist and or Orthopedist) are all trying to decide what would be the best new brace for her. She needs new ones now as she has completely out grown her last pair (yea for growth) and they are not properly holding her feet. But, what kind do we get? A bigger AFO like she is wearing now, an AFO with a twister cable (to help with her outward rotation) or a ground reaction AFO that will provide more knee support? I really don't know as each has it's pro's and con's. The con's are pretty big in my opinion. The last two listed will limit her crawling mobility. This is a huge deal for me since Annabelle spends 90% of he life crawling. However, I worry that I am not looking at the big picture - will these other braces help her walk better?

I just don't know what's best for Annabelle and honestly I don't feel like anyone is giving me enough information to make an informed decision. I really need some guidance here. If anyone out there can help steer me in the right direction please share your thoughts, ideas and experience. I will be eternally grateful.

**ADDED TO CLARIFY based on several FB messages I received **

Yes, the professionals listed above all have ideas of what type of brace they want for Annabelle and they are all working together to make their recommendation. However, as her mother, I will have the final say with regards to what is actually ordered. Each of the professionals above bring great knowledge and experience but they do not live with Annabelle, they do not know her and her life like I do. I want to do what is best for Annabelle, not what is "typically" done for a patient with Spina Bifida similar to Annabelle's function level. BTW, we have been told that Annabelle functions at an L4 level. I want to make sure that her Dr.'s are always doing what is in Annabelle's best interest so that she can achieve the best life possible. I will not agree to over brace her. I need to be convinced that the twister cables or the ground reaction with knee coverage is the right thing before I will agree to this. I do not believe in "one size fits all" prescriptions or treatment plans. My daughter is an individual and I want to make sure she is always treated that way.

Test results don't always provide answers

2011-07-20T08:04:00.000-07:00

Annabelle had her pH test last week (Wednesday through Thursday) and once again our sweet girl stepped up and faced this challenge with courage and grace. Thankfully, she never seemed to be in any pain only just bothered by all that was going on. She had to adjust her breathing a bit but once she got that down she was really handling the situation very well.

At first she was MAD, MAD, MAD (and made it very known) but it was only because they put soft casts on each of her arms to keep her from pulling out the tube. She was miserably uncomfortable. After about 5 minutes or so I took off one cast and we played with my ipod while waiting for her x-ray. Here we are waiting to be called.

After the x-ray I decided to take off the other cast and trust that she wouldn't pull it out. I was banking on the fact that she had never pulled out her feeding button in her belly. It was risky as they all kept telling me "if she pulled it out we would have to start the whole process over". I took my chances and it was the right decision!

Once we got home she was visibly exhausted but not crying or pulling at her face. Thankfully, she went down for an early and long nap. My mom had the boys - thank you very much sweet Grammy, so the house was nice and quite (a rarity at our place).

When she woke she was happy and back to her old smiley self. She wasn't interested in eating much, but that wasn't a surprise. The main reason we were doing the test was because she is never interested in eating.

She was even happy enough to play ball and crawl around the house a bit. Of course, I had to crawl close behind her because she didn't realize that she was connected to a small computer. I was happy to be her computer"caddy".

Tonight (7-19-11) the GI Nurse called with her results - they were NEGATIVE! She does NOT have Acid Reflux!

I have to admit, I had slightly mixed feelings about the results. Don't get me wrong, I am happy she doesn't have acid reflux and I'm glad she doesn't need any additional medicines however, we are still left with the issue of WHY won't she eat???

She's a stubborn little girl (which will serve her well in life) and the Dr. is strongly thinking her issues are behavioral and not medical. I think he's probably right. Because she was constipated for so long and dealing with non-stop UTI's and vomiting he believes she has learned to live (comfortably) on a very minimal amount of food.

The next step is to give her a stomach emptying test to see how quickly or slowly her food moves through her. If it goes slow, than the thought is that she is feeling full all of the time and consequently won't want to eat. If this test comes back normal than it will be heavy OT (Occupational Therapy) for our girl to get her eating.

Thanks for all the blog and FB love this past week. I am stronger (and happier) because you are all a part of my life.

xoxo

My Roller Coaster

2011-07-12T21:27:00.000-07:00

Early tomorrow morning (Wednesday) my sweet girl and I will be heading down to the hospital for some additional tests. Annabelle will be having a pH monitoring test - pH is a measure of the acidity or alkalinity of a solution. The Dr. will place a small catheter through her nose and into the throat and esophagus. Here, sensors will detect acid and a small computer worn will record findings during a 24-hour period. The Dr. is doing this test to determine if her continued lack of eating is due to her possibly having acid reflux, specifically Laryngopharyngeal Reflux (aka Silent Reflux). Click HERE if you would like to read more about it.

I don't anticipate that it will be painful, but a bit uncomfortable I'm sure. I am praying she won't pull it out of her nose. She has been SUPER feisty lately. I think someone is going to be two very soon! Her new favorite word is NO!

The Dr. will also be replacing her current G-tube Mic-key button with a new Mini button. Ahh, so cute Mickey & Mini! Just kidding. Apparently this new button will be lower profile on her belly, cut down on granulation tissue growth (thank you!) and have much less leaking! Yeah, it sounds like exactly what we need. It just makes me wonder WHY we didn't get this one in the first place? Oh well, we are getting it now and I'm thankful for that. The leaking is driving me CRAZY! If for some odd reason you want to read more about the mini g-tube button click HERE.

So, needless to say I am feeling a bit anxious tonight. After all of those past hospital stays, I just really dread going to the hospital even when I know in my head tomorrow isn't going to be that bad at all. So, if you can, please keep me and my sweetie girl in your hearts tomorrow. We are praying for a smooth procedure that will produce conclusive results that will point us in the right direction. If she indeed has reflux than we can start a medicine and hopefully get her eating. If she doesn't have it than we can cross that off the list and continue to try and figure out why my girl doesn't love food as much as he mommy and daddy does :-)

Yes, my life is a bit like a roller coaster ride most weeks but it's my roller coaster and with a wonderful daughter like Annabelle how can I not enjoy the ride! Thanks for coming along - we enjoy company!

This girl

2011-07-09T20:22:00.000-07:00

has gained 5 pounds and grown 2 1/4 inches in the last 11 weeks!

Check out her double chin - so cute! Her thighs are even cuter.

She also walked with her walker OUTSIDE for the first time today.

and she did great!

Now we're cooking

2011-07-04T21:37:00.000-07:00

Annabelle has always enjoyed playing with her pretend sink and stove, however, I think this weekend she took it to a new level of fun. Not only has her imaginative play skills grown by leaps and bounds over the last few months so has her strength. Typically when playing Annabelle is either on the ground sitting or lying down and reaching up. This weekend however, Annabelle used her walker to walk up to her pretend kitchen and stayed standing there to play for well over 20 minutes until I sat her down so I could do some real cooking - it was lunch time!

Annabelle LOVED standing and playing and we loved watching her play. It really was the highlight of my weekend. Check out out our girl having a blast cooking and washing.

She loved turning the knobs. She can't typically reach these

I think she was as proud of herself as we were of her

Our girl loves to wash her hands - both for real and pretend

Adding some "soap" to the sink for her dishes

The walker started to get in her way so I moved it back a bit. I love that she wasn't overly concerned when I moved it. Thankfully, she was very comfortable holding onto the stove for stability.

We were so impressed with all of the one handed holding on she was doing

Okay, I know that was A LOT of pictures of Annabelle doing essentially the same thing, but wasn't it super cool to see her playing like that? I thought you might agree.

By the way, for those that are wondering what that blue strap is on Annabelle's leg. I have her legged (poorly) wrapped in a derotation strap to try and help straighten her leg (they turn outward). I am supposed to wrap both legs but struggle to get them on and keep them on after each cathing. I'm doing better though - anything to help my girl!

Thanks for checking in on us. I know I have been super slow on updates lately. We appreciate all the love and prayers - they are working!

Everything seems to have a price

2011-06-11T23:58:00.000-07:00

Sadly, things quickly took an unexpected turn after my last "life isn't so bad with a g-tube post". It's been a rough couple of weeks trying to keep her "button" area healthy. We noticed that she had some extra red/fleshy skin growing around it and we were immediately concerned. We brought it up to the GI Dr. nurse and she brushed it off as normal and just something that happens when you have a G-tube. Because it was small and didn't seem to bother her at first I was accepting of that answer. However, it quickly grew in size and then started to bleed. I decided to reach out to the Surgeon's nurse and thankfully she was very responsive. I spoke with her on Wednesday May 25th and she arranged for Annabelle to be seen the following Friday, May 27th.

This is what they saw when we arrived. It's called granulation tissue and it's gross!

They were very happy that I called them and that I didn't just accept that "this just happens". Yes, it's common and it does happen but they always try to take care of it and minimize it's growth. The treatment plan has been cauterization (done there at the hospital outpatient office) and the application of a steroid cream 3 times a day. Thankfully, the cauterization was not as bad as I has expected. She cried a little but only because the nurse and I had to hold her arms and legs down. She did not seem to be in any pain. I'll admit I was a bit shook up from the whole experience.

Disappointingly, we had to return to see the surgeon the following week because the granulation tissue grew back. Here she is waiting to get her belly checked out by the surgeon on Friday June 3rd. I was feeling nervous and worried since this was the second week in a row that the granulation tissue had grown back after being cauterized. She on the other hand was happy as can be and loved saying "cheese" for her picture.

After this appointment where they once again cauterized all they yucky tissue that was growing the surgeon gave me four sticks covered with silver nitrate and instructed me that he wanted me (yes, me!) to cauterize any new tissue that grows during the next week. Oh my, talk about stressful, but I did it. It wasn't fun and I was so very nervous but it seemed to do the trick - for now at least. When we returned again on Friday, June 10th the Dr. did not need to do any cauterizing, which was a blessing. He said it looked good. There is however, a significant amount of skin irritation / breakdown that needs to be taken care of. So now we have a few more steps in the daily "process". He is having us put Bacitracin ointment around the button (which right now is the considered the "wound") and then cover it with a mesh like, sterile, non-adhering protective dressing called Xeroform. We then cover that with a dry gauze to help keep it all in. We will return again next Friday for a follow up.

It is wrong of me to say (or shout) I DO NOT WANT TO STEP FOOT IN THAT HOSPITAL AGAIN FOR A REALLY LONG TIME!! I'm just over it! Are any of you thinking what I am thinking? Enough is enough!!! I know it really isn't that big of a deal but it is ONE MORE THING! I hate to complain and I try not to but seriously this kind of sucks. Her poor skin is so red and it just seems to be getting more irritated. I think the problem is that she is a belly crawler and as she crawls she continually irritates the button. I don't really know how that can be addressed - she needs to be able to get around. I think it's fair to point out that Annabelle does not seem to be bothered at all by the button, by the leaking (which I didn't even address in this post), by the skin irritation, etc..... Thankfully, these really are my concerns, not hers. She actually seems happier than ever.

I guess that last line says it all - she seems happier than ever! There really is no question that she is stronger than before she got her G-tube. One example is how she is now consistently getting up on her knees and is climbing up to things. She is almost able to pull herself all the way. She doesn't crawl (yet) in this position, she just puts herself in it and screams really loudly (no joke) the words "KNEES!!!" She wants everyone to know what she is doing and then she claps for herself. She's not shy - she's my daughter :-)

She is also very much enjoying practicing on her parallel bars that we have set up outside.

Here she is walking at her parallel bars - Saturday, June 11th

She is also tolerating her 1 1/2 hours of PT & OT 3 days a week. She is making noticeable progress. Here she is walking with her walker at PT earlier in the week.

I guess it's pretty obvious to say that the positives far outweigh the negatives and that is truly what I need to focus on, but I'm human and that's hard to do some times. I know this experience of Annabelle having a G-tube button is not going to be easy but we all know that most things in life that are worth having aren't easy. Annabelle's health, growth and development is what matters the most and her button IS helping with all of those areas of her life!

By the way, our sweet girl is up 3 pounds!! She now weighs 20 pounds. Yep, those adorable little legs of hers are getting chunky!

There's NO question our girl is LOVING life. She is not feeling sad about her "extras" so I need to snap out of it and fast.

I wonder if Branden is strong enough to throw me up in the air like that? I wonder if I'd love it as much as she did?

Annabelle - I love and admire your zest for life. I hope it never fades.

This can't be comfortable

2011-05-22T23:19:00.000-07:00

This is how we found Annabelle tonight when we went in to cath her and set up her night feeding. That can't be good for the nose. Such a silly girl!

An update on life with a G-tube and life in general

2011-05-18T08:08:00.000-07:00

I'm happy to report that life with a G-tube is not as horrible as I had feared. It's actually quite manageable and has truly been the answer to so many of our prayers. We are really very happy that she has it and she seems to be doing very well with it.

Here's a quick overview of how it all works. Every night she gets 360 ml (1 1/2 cans) of Pediasure through the tube. It's on a slow drip pump. She gets 40 ml per hour for 9 hours. She is still able to sleep on her belly (which she loves) and so far we haven't had any problems. She wakes happy and energetic and ready to start her day. It's amazing how much more energy she has. She was always a happy, energetic girl, but now she's more like the energizer bunny!

We offer her 2 meals a day - lunch and dinner as well as snacks. She also still nurses at nap and bedtime. We don't offer her breakfast as she is not hungry at all because of the overnight feeding. I was told that we will eventually cut back on the night feeding to reintroduce breakfast but for now they just want her to get the high calorie nourishment of the pediasure. She "typically" eats one of those meals very well and then picks at the other. She nibbles on snacks and drinks from a sippy/straw cup a little. Keep in mind that she is basically eating and drinking just like she did before except now she is actually getting nourishment through the tube. The other major difference is that meals are not a struggle at all anymore. I offer the food. I gently encourage her to eat it. There is no begging, pleading or crying from either of us and sadly that was a daily occurrence. We are teaching her to eat food because she wants it and is hungry and because she likes it. We are letting her self feed and become more independent while not having to stress the whole time wondering if anything actually made it into her mouth. I give her 1 can of Pediasure throughout the day (through the g-tube) to make up for the food she didn't eat. I also give her lots of water and her medicines through the tube. This has helped to flush her urine and keep her hydrated as well as has helped tremendously with her constipation.

I'll admit it was very overwhelming at first and we were so fearful that her button would get infected. However, once we got on a good schedule and were told by the GI Dr. and the surgeon that she was healing nicely things really started to fall into place. As a side note: I have combined her G-tube schedule with her cathing schedule. So now every time I cath her (every 3 hours - 6 times a day) I also give her water for hydration or pediasure for nourishment as well as any medicine that is due. I think it adds about 10-15 more minutes to the process but it's way better than trying to do it at a separate time. She is a typical kid and is not very interested in having her play time interrupted for feeding and diaper changes so combining it really is the best option. It's really working well now and feels like a real routine.

Here's a visual update of Annabelle from this last 2 weeks.

I love seeing her happily eat. Okay, so this was cake, of course she's going to be smile. She is also loving spaghetti right now. She has eaten it almost everyday since she got home.

Picture taken May 1st - 1 day after being released from the hospital

Here she is saying one of her favorite words "MEEEEEEEE". This pictures was taken just a few days after getting out of the hospital. She bounced back remarkably well.

Picture taken on May 3rd

Therapy is also still going VERY well. We are are there 3 days a week doing PT and OT. Yes, it's a lot and some days I wish we didn't have to go BUT check out this awesome doll house she gets to play with. What a lucky girl!

I could pout and wish our time was spent differently or I can be happy and focus on the fact that she's is getting stronger every day.

Pictures taken on May 9th

Annabelle loved going to Benjamin's T-ball games and she was clearly his biggest fan!

Picture taken on May 11th. Click HERE if you want to see more pictures of the kids at Benjamin's T-Ball game

Belle is very proud of her "button" - as she should be. It's a huge help to her and her development and we never want her to be ashamed about herself. It's pretty common to see Annabelle pull up her pant leg to show off her braces and now she is doing the same with her shirt. I think it's very cute to see.

Picture taken on May 12th. Click HERE if you want to see more of Annabelle and her "twin" brother Benjamin on the family blog.

She finally got her own walker about 2 weeks ago. It took FOREVER to arrive and then it was the wrong size but thankfully we now have the right one. She doesn't love it, but I'm guessing it will just take some time to get used to it. She mostly stands at it and dances or cries - depending on her mood. We did get her to walk a bit using it last weekend (on May 14th). We are quickly learning that she needs to be motivated to get moving - like all kids, I guess.

This was her motivation - Ozzy, our cat!

The kids just love him! He tolerates them.

It's been a busy 2 1/2 weeks since we got home from the hospital but it has been a good 2 1/2 weeks. We are very excited to see what the next 3-6 months has in store for her. Now that she is getting proper nutrition and hydration I am confident that life is only going to get better and better for our sweet girl.

We went to Spina Bifida clinic yesterday (May 17th) and thankfully we all agreed that she looks great - very happy and energetic and that there were no need to make any changes at this time. They too were excited to see how she will grow and progress over the next few months. They just said "keep doing what we are doing". It was a wonderfully positive and collaborative appointment. I arrived with such anxiety (I always do), but I left feeling positive, encouraged and validated. Sadly, that is a rarity after meeting with so many medical professionals. I am very thankful for the Spina Bifida team that is helping to take care of Annabelle! We return in 3 months to she Ortho and 6 months to see Rehab. We currently see a Urologist outside of clinic and we are having a few routine tests performed next month for him.

All is good over here and we are SO thankful for that!

1 POUND!!

2011-05-05T16:17:00.000-07:00

Yep, that's what our girl has gained in just 1 week since getting her feeding tube!!!

1 POUND!!!!!

Here's a picture of me giving Annabelle her first G-tube feeding at the hospital last week. It's gotten easier each time and we are so very thankful she has it.

Thanks in big part to these little pricey cans our girl is getting stronger and growing each day.

Thankfully, she's also doing a bit of this each day.

I would be lying if I said that it's been totally easy this past week. It hasn't, but it is getting easier with each feeding. She's getting proper nourishment, staying hydrated and she seems happy - really what more could I ask for. Well, I could probably think of a few things but I will save that for another post.

Sorry it took a full week for me to update everyone on Annabelle. Once we left the hospital on Saturday it was sort of a roller coaster of emotions for a few days and then we moved full force back into regular life. She really is doing GREAT. She's back to her happy self and really doesn't seem bothered at all by her new button. I haven't been able to get a good picture (translation - blog worthy picture) of it but hope to soon.

For those that aren't on FaceBook I wanted to repost this adorable (if I do say so myself) video I took of Annabelle last Saturday while we were waiting to be discharged. It speaks volumes to how well she bounces back after surgery.

I hope my girl makes you smile. Thanks for checking in on us.

pre-surgery pictures and update

2011-04-28T20:16:00.000-07:00

Here she is patiently waiting for our buzzer to "buzz" so we know when it's our turn. Thankfully, she doesn't know yet that these buzzers are what restaurants use to notify you when your table is ready. That must really be confusing for older kids waiting for surgery - especially since you can't eat.

This was her reaction when we were told that surgery was bumped again. New time - 12:35!

She was so happy and playful all morning. It's amazing (sad actually) that she hadn't eaten since midnight yet she never asked for milk or food before the surgery. I'm glad she was happy and not as hungry as Branden and I were - we were starving!

Looking so very cute

She and I were having so much fun (crazy, I know!) right before she went in for surgery. She was making us laugh so hard. I just love her sense of humor.

Branden snapped a quick picture before we went back into the Operating Room. It's confirmed - I will never go with out bangs!

Thankfully surgery only took about an hour. They were able to go in laparoscopically verses open surgery so this was great news. The first hour in recovery was a bit rough. She was obviously in a lot of pain. However, after 2 doses of morphine she started to seem a bit more comfortable. Finding out that she couldn't have anything by mouth for 24 hours was a bit discouraging but completely understandable. We spent the next several hours in recovery waiting (and waiting) for her room to be ready.

We were finally transferred to the room about 4:15pm. Honestly, it was better down there. We have a roommate of course, but this roommate is only 3 years old and has about 6 family members by his bed at all time. He's been screaming non stop - which I feel bad about except for the fact that Annabelle is exhausted and can't fall asleep because of all the noise, he's getting breathing treatments every 3 hours - around the clock and he gets to eat so the room smells of pizza which is heart breaking for her. I've requested a room change but aren't sure we will get it. Branden is here now thank goodness but he will be leaving soon. Work's a bit crazy for him right now so he needs to go in tomorrow. Lord give me strength!

I will try and post her "post-op" pictures. There are some really cute ones. We are so very thankful that the surgery went well and are hopeful her body will respond to her new "button". I have to admit it's bigger than I expected and I cried when I first saw it. Like anything new it will take a bit of getting used to.

Thank you family and friends, FB friends and my on-line/blogging friends for ALL the love and support today. You sure know how to make a girl feel special :-) We were blessed to get a quick visit earlier from Annabelle's Neurosurgeon , Dr. Javahery, also our good friend Glenn (who works here) and my Dad who brought us dinner. It was nice to see each of you!

That's all for now!

Surgery Update

2011-04-27T21:42:00.000-07:00

We wanted to let everyone know that Annabelle's surgery scheduled for Thursday, April 28th has been bumped to 12 noon. We will now check in at the hospital at 10 am and hope that the surgeon has stayed on schedule so that Annabelle will have a successful surgery. We are hopeful she will be eating by dinner time. If this is the first you are reading about Annabelle surgery, click HERE to get all of the details.

I thought this picture was funny and spoke volumes to how Annabelle's lack of eating has affected us all. Benjamin (fyi - he's 4) was graciously trying to help feed Annabelle for me. She had already thrown all her noodles off her tray and refused all food I was trying to spoon feed her. She was willing to take a few bites of fruit off the spoon from Benjamin. After about 3 bites she stopped and this was Ben's reaction. He was saying "Come on Annabelle, you neeeeed to eat" It was in this long, drawn out desperate voice. Poor kid, I guess this is what he hears out of my mouth every day. So glad we are taking steps in the right direction.

Thank you all so much for the outpouring of love and support we have received this last 24 hours. All of the comments left here and on FaceBook have just warmed my heart. It really helps more than you know. Okay, I better go because I have lots to do and bags to pack.

Focusing on the bigger picture

2011-04-26T22:00:00.000-07:00

That is what we are doing right now. I am trying to push away my worries and my fears and only focus on this sweet girl and how much better life should be for her - very soon.

Annabelle will be having surgery # 8 this Thursday, April 28th.
Please pray for her and her doctors, for Branden and I and our boys. Surgery is always so scary and hospital stays are always hard on all of us. It's difficult to be separated and it's lonely there.

For those that aren't aware yet, Annabelle will be getting a Gastrostomy Tube (G-Tube) on Thursday. To read more about G-Tubes click HERE. The short description is that a G-Tube is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow.

Anyone who has spent time with us knows that Annabelle eats and drinks very little. We have been working on it and some days are better than others but sadly most days she just doesn't have any interest in food or drink. Thank goodness she is still willing to nurse twice a day. She is almost 21 months old (wow!) and is weighing barely 17lbs. She's a little peanut. But more than the lack of growing or failure to thrive as they call it, her doctors are all pretty confident that her lack of eating and lack of hydration is directly effecting her sever constipation and chronic UTI's. The hope is that with the placement of the G-Tube we will be able to ensure that she is getting the proper nutrition and hydration she needs to get her bowls working better to decrease the constipation and to flush her urine better so she stops getting these darn UTI's. It seems like it's sort of a vicious cycle - she doesn't eat because she's constipated, yet she gets constipated because she doesn't eat or drink - ugh! I am very hopeful that this supplemental feeding will help to resolve or greatly minimize these problems we have been having for so long.

Just to clarify a few things that you might be wondering -

1. She will continue to eat normally during the day. Her G-tube feedings will be administered overnight while she sleeps. She will continue to work with her Occupational Therapist (OT) to develop better eating and drinking skills.

2. She will NOT have a long tube coming out of her belly. She will be skipping the tube and getting whats referred to as a "button" right away. The "button" is a device that is flatter and lies against the skin of the abdomen. The button can be opened for feedings and closed in between feedings or medications.

3. This is NOT a permanent solution to Annabelle's eating problems. It is intended to be a temporary solution to help get her to where she needs to be nutritionally while she continues to learn to be a better eater. Once the doctor decides that Annabelle is able to take in enough nutrition by mouth, the button will be removed. Removal takes only minutes and is usually done in the office by the doctor or nurse. Once the button is out, a small hole will remain. It should be kept clean and covered with gauze until it closes on its own. In some cases, surgery is necessary to close the hole. Either way, the scar that remains will be small.

So that's it in a nutshell. Am I scared? Yep, really scared but I know in my heart it's the right thing to do. I am confident that she will soon start to realize the benefits of a full, happy belly. But, like the 7 times before, it won't be easy handing her over for surgery. I've been lucky in the past to be able to hold her in the operating room until the gas takes effect to help minimize her fears. I don't know if "lucky" is really the right word - it's actually one of the most difficult things I've ever done, but I wouldn't have it any other way. I can only imagine how scared my sweet girl is. She's smart and I know she remembers but I will be there with her holding her tight.

We will check in at the hospital at 6 am on Thursday and the surgery is scheduled for 7:30 am. I am hopeful we will be released on Saturday but if not then Sunday. I will post updates as I am able. I am unsure what we are looking at for recovery time. I welcome all positive (sorry, I can't deal with negative right now) G-tube stories anyone has to share.

Please hold us in your hearts this week. We need your prayers. As always, thank you for loving and supporting us. Our lives are even more blessed because you are all a part of it.

Catching up on Cuteness!

2011-04-25T22:21:00.000-07:00

Because I am tired of seeing my frustrating A-Med posts every time I look at Annabelle's sweet blog.
Because I am not ready to deal with everything else that is going on with Annabelle right now.
Because who can resist an adorable little girl on skates!

These pictures were from April 11th.
More updates on the latest and greatest to come soon.

A-Med Health Care's Response to my letter

2011-04-05T21:48:00.001-07:00

A couple of people have asked how Charles, our Customer Service Manager at A-Med responded to my letter. I am happy to report that he did not wait to contact me. He called first thing (8:01 am to be exact) on Monday morning and was ready to discuss my very valid concerns.

He assured me that he did not not know of the recall on 3/18 when he and I spoke specifically about my dissatisfaction with the Triad's providine Iodine pads. The reality is that he should have known, but I have no reason to believe that he did know at that time if he is saying that he didn't.

He is stating that the company became aware of the March 15th recall on Monday, March 28th and that they "immediately" aka 4 days later on Thursday, March 31st wrote, by snail mail, to their customers to tell them to "immediately" stop using this potentially dangerous product.

I explained to him that I DO NOT believe that someone at some level in his organization was not aware of this very serious recall.

I explained to him that companies have an obligation to know what is going on with their products - especially products that are used in such an intimate way.

I explained that even someone like myself who is not very technologically savvy can create a very basic google search on the the words "Triad medical" and was able to get a significant amount of news information on this company.

I let me him know he was welcome to believe that no one knew if it made him feel better but I just wasn't going to be naive.

I then proceeded to explain that in the small chance that no one in his company knew about that the recall until 13 days AFTER it was issued by the FDA than his company truly had some issues and should expect to see further challenges and misses down the road. I also let him know that I was unsure if I could continue giving his company my business going forward.

He assured me that he took my concerns very seriously and that he had already forwarded my e-mail to both his boss - the Chief Operating Officer and to the Vice President of Legal Affairs. I was very pleased to hear this as I plan to be that squeaky wheel. I do not intend to let them forget that they are dealing with people's lives - not just product and paperwork. I want them to forever think of Annabelle and people just like her anytime a recall happens so that they think hard about how their process of notification is handled.

The reality is that notifying us 18+ days (depending on where you live) AFTER a health related recall is issued is UNACCEPTABLE!!! I told Charles that even the PTA knows how to do a recorded message to let us know about an important announcement. In this day of technology it is my strong belief that A-Med should have sent out an automated call instructing patients to immediately stop using the product. The call should have directed us to a detailed letter on their website. They should have also sent out follow up e-mails (which they do every month for reorders) and then hard copy notifications. Honestly, I could care less to have gotten it by snail mail but if they wanted to or legally had to then that would be a wise last way of notifying the customers. I do not feel in any way that this was too much to ask. By the way they took 28 days to notify us in January of the recall on the Triad Lubricant packets.

So when Charles and I were ending our conversation on Monday morning he said "I will get those replacements kits shipped right out to you tomorrow". I thought to myself - um, excuse me, I don't think so! I reminded him that his office is 25 minutes from my house and that they would need to be delivered by end of day today (Monday). He agreed and they were delivered at 6:30 pm by a very nice driver in a PT Cruiser ~ that's California for you.

I am pleased to share that I received a call from The COO this afternoon. Unfortunately, I missed his call and was unable to return his call until after business hours. I look forward to speaking with him sometime tomorrow between PT, OT, Speech, preschool pick up, kindergarten pick up and T-ball - I WILL make it happen!! I will also make my concerns heard and understood because if I don't who will?

I thought it would be nice to close this serious post with a few pictures of my sweetie girl. She is one of 3 reasons I fight as hard as I do!

My not so nice letter to A-Med Heath Care - our catheter kit supplier

2011-04-01T23:21:00.000-07:00

I am just livid to find out today that yet another recall of Annabelle's catheter supplies has happened. A few months back it was the lubricating jelly. Now it It's the providine iodine pads. These products have both been contaminated with potentially deadly bacteria. These are products that are used ON or IN our daughter 6 times a day EVERY DAY!!

It's Friday night and after searching the internet for over an hour to learn more about this latest recall, I just couldn't take it any more. I am FURIOUS - both with the manufacturer and with our supplier who in my opinion did not inform us in a timely manner. I am feeling so vulnerable because we need these products to help keep Annabelle healthy yet these products are deemed unsafe. How can I honestly ever trust that they are safe. I am so mad right now. Below is the not so nice letter I wrote to our customer service manager at A-Med Health care.

Charles,

I am extremely upset and it is imperative that we speak as soon as possible on Monday morning. I received your letter today, however it appears that the FDA recalled the Providine iodine prep pads on March 15th and it was all over the news by March 18th. Here's just a few of MANY links discussing this extremely disturbing news.

http://www.msnbc.msn.com/id/42144671/ns/health-health_care/
http://energybillbyhalf.info/infection-risk-triggers-new-recall-from-embattled-company/

If you recall, you and I spoke on on March 18th at 11:36 am (according to my phone records) specifically about my dissatisfaction with this exact product. I even directly asked you if other complaints had been made about the quality of this product. Of course, at this time I HAD NO IDEA that it was being recalled due to contamination with a potentially deadly bacteria. I am OUTRAGED that you did not bring this to my attention. It is hard for me to believe that you were unaware of this recall during our conversation, but in the event that you weren't I am CONFIDENT that you knew within the next 24 hours. My question to you is why you did not call or e-mail me, your customer to tell me to immediately stop using this dangerous product. You are my Customer Service Manager. What kind of customer service is that?

CHARLES, WHAT IN THE WORLD WERE YOU THINKING? MY DAUGHTER HAS A CHRONIC HEALTH CONDITION AND A COMPROMISED IMMUNE SYSTEM. YOU KNEW THIS AS WE HAVE SPOKEN MANY, MANY TIMES ABOUT THIS. HOW COULD YOU GO HOME EVERY NIGHT WITH THIS KNOWLEDGE AND NOT LET ME AND OTHER FAMILIES LIKE US KNOW THAT WE WERE USING A DANGEROUS PRODUCT?

I am so completely disgusted with your company and the lack of professionalism and the disrespect you have shown for our daughters health and for our family.

I have approximately 200 kits (I will confirm the correct # in the morning) in my possession which need to be replaced immediately with a QUALITY, STERILE products. I am truly at a loss for words about this situation and I assure you that rarely happens. Your letter states "A-Med Heath Care takes your health and safety very seriously" but that statement is seriously hard to believe at this point.

Please do not wait to contact me as we need to make arrangements to handle this situation on Monday.

Nicole Summers

Two years later

2011-03-26T17:56:00.000-07:00

It's hard to believe that it was two years ago today that we were told that our sweet little girl would be born with Spina Bifida. What a dark and scary day that was.

If only they could have told me that this sweet face was the face of our precious daughter

If only they could have told me that she would have the most infectious laugh ever

If only they could have told me that my heart would melt every time I heard her sweet voice say "hi" or "mama"

If only they could have told me that her smile would light up any room

If only they could have told me that she would be the bravest, happiest and most loved little girl around

Then maybe, just maybe those last few months before getting to meet her wouldn't have been so difficult. Sadly, they didn't tell us those things, but guess what - that's okay because they are ALL TRUE!

I don't think I will ever forget March 26, 2009 and what was told to us on that day. That day changed our lives forever. But truly, our new life began on July 29, 2009 when Annabelle was born.

I am writing this post less for me but for the new parents who have recently gotten a diagnosis of Spina Bifida for their baby. I write this as a testament that what feels like some of your darkest days will eventually become a distant memory once your sweet baby is born. No Doctor can truly tell you what your child will or will not do - they are writing their own story and it will beautifully unfold with your love and support. Having a child with "extras" is hard, but honestly parenting in general is hard. Never give up and continue to fight the good fight! Be your child's advocate - you know them better than anyone else. Some days might be difficult but your rewards are endless.

I know these words above are sometimes easier said (written) than lived, but they are true and they are important. Annabelle is a blessing and we are all so thankful for her. It was a rocky start but worth every moment of fear and sadness to experience the great joy she brings us each day. She has taught us all so much.

Last night I reread last years "1 year Diagnosis Day post". The pain seems different, still so fresh. That isn't the case today. I guess it's true that time heals all wounds. I'm so thankful for that. March has been an extra month the last two years - not this year. Click HERE to see some of our families most memorable moments in Mach 2011.

I'll leave you with a prayer and this beautiful song:

Dear Lord, I pray that all families whose sweet child is diagnosed with Spina Bifida and are repeatedly offered termination as an option that they are some how guided to see that their child can have a happy and productive life. I pray that they will find other families like ours and seek out the support that they will need to walk this journey. I pray that each year I will grow stronger and will be guided by you to continue to make a difference not only in my families life but in the lives of others who are faced with difficult days.

A joy-filled life!

2011-03-23T21:54:00.000-07:00

I can't even believe it's already been 3 weeks since our wonderful vacation (pictures to come VERY soon - I hope) that was sadly cut short due to Annabelle getting another UTI. However, in typical Annabelle fashion she bounced right back after all of the San Diego drama and thankfully the UTI cleared after the 10 day course of antibiotics.

So what have we been up to these last few weeks? Well, we've been plugging along with our normal routine:

Physical Therapy: 2 times per week
Occupational Therapy: 1 time a week
Speech Therapy: 2 times per week

Of course, in between all of these therapies we have Kindergarten (Jack) and preschool (Benjamin) drop off and pick up, Martial arts and T-ball practice. Not to mention homework (for Jack) and trying to fit in some good old fashioned fun/play time. Needless to say I have been running on empty and sadly not doing the best job at hiding it. I am trying to get to bed earlier so that I am better rested for the challenges of the next day, hence the reason I haven't posted our super awesome vacation pictures. However, I find that even when I get to to bed I struggle to "turn it off". So many thoughts and worries constantly go through my head. I wish this wasn't the case but it is. I worry for my sweet Annabelle. I worry that her constant UTI's and 4 previous shunt malfunctions have held her back from progressing like she could have. I worry that she is falling behind in a world where she is already behind. This mommy's heart hurts for her sweet baby and the unknowns of her future.

I was telling a friend this past weekend that I sometimes try to avoid the typical mom conversations because of the uncomfortable reminders of Annabelle's current limitations. However, if you want to see friends and feel normal that isn't always possible. I had been having a great time last week with some friends when the talk turned to kids - as it always does. We all have at least two, but most have three who were there that night. We were talking about how hard that first year with a new baby is and one mom said "It's so much easier once they start to walk and are eating solid foods". Although I KNOW (from past experience) this is completely true, my heart sank a bit - considering the fact that my daughter isn't walking and eating food is not her strong suit. It was no big deal really but just one of those little moments when you realize how different your life is from your circle of friends. Then you go home and check in online with all your buddies across the country who have Spina Bifida and OMG we were not kidding when we got shirts printed up with the logo REDEFINING Spina Bifida! These kids are rock stars!!! So many of Annabelle's peers are walking - with and without assistance! Theses kids who are just months older than Annabelle and have become our dearest friends are doing A-M-A-Z-I-N-G! I'm not kidding, really super great. Of course you know I am over the moon excited for them and their families and please do not think I am anything but that, but if we are being totally honest here, it is a little hard to see sometimes. It's hard to see these kids progressing so well and feeling like Annabelle is not. I am often reminded from her therapist that you can't compare the kids because they are all different. I know this, but it's hard sometimes. But the reality is that Annabelle IS progressing, but I have just been stressing and obsessing over it so much I have been blinded by all the A-M-A-Z-I-N-G things our girl is doing.

So, all of this was to say that I have been a little too worried lately, which I know is natural and understandable but honestly it's totally unproductive. Thankfully, Annabelle does NOT spend her nights feeling sad about what she can't do. She is happy as ever and is living life to the fullest. Also, it appears that Annabelle has a few new tricks up her sleeve that she had been waiting to show us and she did just that this past weekend. Check out these video clips below.

Check out our girl - such a strong, big girl!

She actually took her hands off the walker about 4 times on Sunday and then again tonight. She has really been enjoying standing for longer periods of time and is doing better with the walker. This is a loaner walker we were given to use from our PT while we wait (and wait, and wait) for ours to arrive. We are so thankful to have this to use at home.

Here she is doing some floor dancing - lots of tushie shaking and brace clicking.

*I need to put the disclaimer out that is not the normal music we listen to at home. I allowed Jack to be in charge of the music on Sunday afternoon so of course he chose the Jack and Annabelle personalized CD as his first two choices. Thank goodness we were having so much fun dancing I was able to tune out the silly songs.

I would be lying if I said that just because she had a good day on Sunday that all my worries are gone. Obviously, that's not true. But it was an encouraging day that reminded us that Annabelle will do what Annabelle will do in her own time. She is not running a race, she is living her life. It's a great reminder about the life we want to live and the life the Lord wants for us. I read (a version of) this today and it really hit home.

"Jesus lived and died so that we can experience abundant life. Jesus did not come so that we can merely survive life. God's plan is for us to experience joy and peace - no matter what life holds."

John 10:10 clearly states the promise of God, "I have come that they may have life, and that they may have it more abundantly." In this verse, "abundant" literally means "going beyond; full or exuberant." In other words, an abundant life is a life filled with joy. Even in the midst of a joy-less world, we can live a joy-filled life for one simple reason - God is in control and because He is in control, we are promised, "the cheerful heart has a continual feast" (Proverbs 15:15 NIV). Life should be an ongoing celebration.

I wish each of you a joy-filled life, no matter what life holds for you this week or next for that matter. Lets help each other to live the life we were promised by the Lord.

As always, thank you for checking in on us. It means so much to know you guys are out there and that you care. Oh and I have to mention and privately squeal with delight that I just hit 50 followers and although I am not a hard-core blogger I was pretty excited and honored. I had been at 49 for a while and was SO excited to see that I had a new follower this week - yeah! It's the little things :-)

It was tea time!

2011-02-28T22:15:00.000-08:00

At Occupational Therapy last Friday. Thankfully, Annabelle had an adorable tutu to wear to the party. Thank you again Emily and mommy Liz for sending her this adorable tutu for her birthday last year - it was perfect!

Annabelle was having so much fun she didn't even realize she was exercising, practicing her fine motor skills and learning her shapes and colors.

She is such a dainty little flower. She was so cute during clean up, carefully taking each tea cup and slowly putting it back into the box.

Such a fun morning of Mommy, Me and OT!

Different but not less

2011-02-22T19:59:00.000-08:00

There have been many times over the last year or so that I have been sad that Annabelle and I haven't taken any mommy and me classes together. I have such great memories of the classes I took with the boys and I felt like she and I where missing out on this special time together.

It's true, Annabelle and I don't do classes together we do therapy together - we do lots and lots of therapy each week. She has PT, OT, Speech and swim. Some days she has more than one therapy on a day.

However, what I have finally realized is that the most important part of these classes were the "mommy and me" part not what class it was. She and I do lots of mommy and me each week and I am very lucky for that. So maybe we aren't "dancing" like I did in the baby dance classes, or painting like I did in the messy art classes but we are together and we are making great memories together. Therapy can be and often is fun. I am always right there by her side helping, encouraging and photographing all that she is working so hard to accomplish.

It's so hard to believe that our sweet Annabelle is already 18 months old. Seriously, where does the time go? As I continue to understand and accept that my parenting experience with Annabelle will be different but not less than what I had with the boys the more I feel myself embracing the joys of my everyday life. I am very, very thankful for this.

Speaking of fun - check out these pictures of Cowgirl Annabelle from last Friday (2-18-11).

Annabelle's Occupational Therapist asked that she come to "class" aka therapy on Friday in dress up. Because we have been working on getting her comfortable riding their plastic pony Rody I decided to dress her up as a cowgirl. Annabelle had received this outfit from her Auntie Pammie who lives in Texas and hadn't had an opportunity to wear it yet. This was an authentic cowgirl outfit from her head to her toes. She had her own paparazzi snapping pictures of her.

She was not a fan of the hat at all.

She loved showing off her boots to everyone that walked by.

Here she is riding Rody!

Music makes her move!

2011-02-19T16:03:00.000-08:00

I know I've mentioned Annabelle's love of music and dancing before but I thought I'd share this little clip it of her grooving before bedtime. Honestly, anytime she hears music it seems that she must stop and dance. It doesn't matter where she is or what she is doing if she hears music she must move her body in some way.

This night it was a bit of a jungle dance with an elephant ending

2-14-11

Playing house

2011-02-16T21:41:00.000-08:00

Annabelle LOVES playing with her doll house she got for Christmas. I thought Branden was quite creative last weekend when he put her in her mobile stander (to strengthen her legs) and then set her doll house up in front of her. Such a good daddy! Such a great girl!

Always smiling!

Dancing

2011-02-11T15:00:00.000-08:00

Okay, so please ignore my voice.

Updated PT pictures

2011-02-10T22:46:00.000-08:00

I've had a lot on my mind lately that has kept me from blogging. It's actually kept me from doing a lot of things these last two week. We've had sick kids, schedule changes (current and future), speech therapy drama and just some good old pity parties happening over here. I feel bad admitting it since I said I wouldn't let SB win. Technically, it's not winning but it sure is putting up a good fight.

However, when you have three active kiddos like we do things don't stop just because mom's head is spinning or hurting for that matter. So, I actually have lots of fun pictures to share both here and on the family blog - soon I hope!

Although Annabelle hasn't put on much weight in the last 6 months she is changing and looking so much older. She's acting older too - much more like a toddler (yikes) and less like my sweet baby girl.

Here she is at PT last week (2/2) with her AWESOME therapists! We are SO very thankful for them and all that they do.

YOU WON'T WIN!

2011-01-30T13:52:00.000-08:00

Yep, I'm talking to you SPINA BIFIDA!!! You thought you were winning but you won't!

I have once again realized that I can sit here and be sad and waste my days away or I can be happy, strong and thankful for all that I have. Life is what you make of it and I refuse to let Spina Bifida ruin my family's life. It is part of our life but will not take over our life. It won't, if I don't let it. I know that I set the mood and tone for our home. When I am worried and overwhelmed everyone feels it and in turn reacts in their own way - which is usually not the best way either. So, enough of that! Those days are over.

I woke worried and had many tears this morning but enough is enough. Yes, Annabelle is sick again. Quite sick from the looks of it. I don't know if it's another UTI or if the C-diff has returned or never went away. Sadly, she is uncomfortable, nauseous and has a fever. My goal is to keep her hydrated over the next 24 hours so we can avoid another hospital stay. The Dr. will see us in the morning, start the lab work to determine what in fact is infecting our sweet girl. We will then figure out where to go from there.

My head is clear and I am in charge once again. This set back will NOT break me, it will NOT get the best of me. I am stronger than I think I am and we WILL get through this.

Thank you everyone for the love and support you have all shown us. I can't thank you enough. I thought it had been too long since I posted any videos of our sweet girl so here you go. This video was taken on Monday, 1/24/11. Because she has been almost non stop sick since Christmas she hasn't really made as much progress with the walker as we had hoped. But really, who am I to judge HER progress. She is doing awesome and is doing what her body is able to do today. Progress is progress regardless of how small it may seem. Check her out for yourself.

*side note for my mommy friends who have been around since baby #1 - yes, that is a LBLO original tie dye onesie.

P. H. S. D

2011-01-28T22:47:00.001-08:00

So it seems I have been noticeably quite these last two weeks. Transitioning from the stress of a hospital stay to hustle and bustle of our home life is always hard for me. This last stay/transition was particularly hard. I'm not sure exactly why, it just has been. I guess four days of constant noise, interruptions, doctors, nurses, med students, injections, bad news and more bad news, set backs, lack of sleep, etc. can really upset ones rhythm. Unfortunately, mine was really knocked out of whack this time! I am slowly starting to come back around - which means I only cried once today (scary, I know!). Sadly, I have been a big ball of emotions these last two weeks. I'm trying, really trying to snap out of it. I need to snap out of it. My family needs me to snap out of it! So please bare with me friends as I find my way back.

Clearly my Annabelle isn't suffering from the same post hospital stay distress (PHSD) that I am, which is great (that was my attempt at comedy). She has jumped right back into normal life and is her happy self again. She does HATE all of the medicine I've had to give her though - 9 doses a day, 4 of which make her vomit if not on an empty stomach. This has been a major challenge for me. 3 of those doses (the C-Diff antibiotic) stop tomorrow (yeah!), however, we are starting a new medicine on Monday to help stimulate her appetite. She is eating more than she was this last month but clearly is not eating or showing enough interest in eating that she should be. I am happy to report that she has put on some weight ~ just about 9 oz in the 2 weeks since she was admitted to the hospital. We are very hopeful she will keep gaining and moving in the right direction. BTW - with the 9 oz gain that puts her at 16lbs. 1 oz, 27 inches long. If only I could gain that slowly :-o

Here she is being her typical ROCK STAR self with her super cool brother Benjamin

Thanks for checking in on us.

Hospital Highlights

2011-01-16T20:00:00.000-08:00

It's Monday night and we are home! We actually got home yesterday but I have been and sill am totally still exhausted. I figured I better get some stuff down about the last 3 days in the hospital before life gets back to crazy, I mean normal tomorrow. We were VERY lucky to have Branden home with us today.

So just to recap, Annabelle was admitted to the hospital on Thursday and was released on Sunday afternoon. Click HERE if you would like to read the details of what lead to her hospitalization and how the first 12 hours went.

Friday was very up and down. The first half of the day (morning and early afternoon) Annabelle was feeling pretty good. She was hydrated from all the fluids, had passed large amounts of poop (sorry if that TMI) and was getting medicine to fight the infection that we didn't know she had yet :-o You can see in the pictures below that she had become much more comfortable and playful. It was so great to our sweet Annabelle shinning through again.

We are VERY thankful for the Child Life Department at the hospital who so graciously brought us over toys, books and even a swing to help entertain Annabelle. I have learned that it is quite difficult to keep an almost 2 year old happy in a hospital room - especially when they can't really get out of their bed.

Annabelle loved getting a surprise visit from her Papa. Mom and Dad loved getting lunch brought to us. Thanks again Dad!

After my Dad's visit Annabelle and I went for a little ride down to radiology. The Dr.'s wanted a renal ultrasound since she was testing positive for a UTI and they were concerned about her kidney's. Sadly, the results showed that her hydronephrosis has come back on both sides - ugh! We are hopeful that maybe once she isn't impacted, not infected and has recovered from all the stress of the clean out that the kidney's will look healthy again. We plan to do a repeat ultrasound in a few weeks.

By mid afternoon Annabelle's diaper rash was getting to be too much for her to handle. Word of Advice - if your child ever has to be hospitalized for a clean out PLEASE request hospital grade diaper rash cream (i.e. Sensi-Care) and A and D ointment to put on their bottom BEFORE the poop starts to come. We were putting A and D ointment and Desitin (which is what they provided to us) but it wasn't doing anything. Her bottom went from beautifully soft to reddish purple over night. It was heartbreaking! She cried for almost 2 hours non-stop. I was able to get her some Tylenol and then Seni-Care which started working immediately.

We also got the disappointing news on Friday afternoon that Annabelle had tested positive for C. Difficile. Here's a short explanation of what it is: Antibiotic-associated (C. difficile) colitis is an infection of the colon caused by C. difficile that occurs primarily among individuals who have been using antibiotics. The belief is that Annabelle developed C-Diff after taking the antibiotics for her ear infection that started on 12/31 or possibly after her last round of Cipro (in Oct.), which would mean my poor sweet has had it a little while. Thankfully, they started her on the antibiotic (yep more antibiotics) to fight it right away so she actually got 24 hours worth of it even prior to actually knowing she was positive. Apparently, this is also why she was put into isolation (i.e. private room for mommy!). Sadly though this meant we would NOT be heading home on Saturday as we had hoped, which meant sad mommy.

Saturday came and Annabelle was feeling pretty good. Visibly tired but I was as well so I think that was to be expected under the circumstances. It's funny how they say rest is the best medicine yet you can't get any rest in hospital!

Here she is taking care of her baby

Taking a wagon ride down to X-ray. They wanted to check and see how much poop was still left in her belly. Because it's RSV season we opted to have her wear a mask to help prevent her from catching something from someone else. I was disappointed that the nurses didn't suggest it themselves but glad that we ensured that it happened.

Thankfully, we got the news that she was finally cleaned out and could stop the clean out medicine which by the way is called "GoLYTELY". I thought that name could be debatable :-)

We also so got the go ahead to start eating!! After about 35 minutes of gulping, I mean nursing she had a few of her favorite graham crackers, then 2 cereal bars and 4 ounces of Pediasure. My little girl was hungry and finally had somewhere to put it.

One more cereal bar please!

Sleeping so peacefully on Saturday night without her NG tube.

Sunday afternoon - dressed and ready to go! Just waiting to get our papers to get out of there!!

Once again I just want to thank everyone for all the love and support. Bottom line, being in the hospital is hard, very hard I won't lie, but we got through it and we are moving forward. However, I know we would not have been able to move forward as well without all of you - your love and support means so much to us! Just to name a few that really came through for us this week:

Grammy (my mom) - for watching the boys on Thursday & Friday
Papa (my dad) - for lunch on Friday and watching the boys on Saturday morning
My mom's group friends - for sending over the yummy food and goodies from the Secret Santa party I had to miss :-(
Our two neighbors - one who brought a complete dinner on Saturday and the other who brought us a wonderful lunch today.
Our good friend Greta - for bringing us a huge batch of pasta and all the trimmings which we ate both last night and tonight. FYI - Greta has 3 children and is pregnant but somehow found time to make us a meal - pretty awesome!

WE ARE SO VERY BLESSED! Three sleeping babies and a huge pile of laundry to fold. What more could a girl ask for :-)

Crappy News

2011-01-14T04:30:00.000-08:00

Okay, so that was a bad attempt at some humor during a pretty stressful time. Annabelle was admitted to the hospital yesterday (Thursday, January 13th) due to sever constipation, coupled with diarrhea. We have been battling this for what seems like 3-4 weeks now and I am so thankful we are finally getting some answers and finally making progress.

I have been talking with her pediatricians for several weeks about the diarrhea and what seemed like an extreme slow down in solid stool. Everyone attributed it to one thing or another - first it was a side effect of her ear infection, then it was a side effect of the antibiotic given for the infection. My heart told me different. I was noticing an increase in her belly size and a decrease in the already very little amounts of food she ate. I brought this up but after 2 exams everyone still felt that although there was some small amounts of stool in there it didn't feel hard or obstructed and to just continue as I was doing. Well this was wrong advice and sadly a wrong diagnosis.

After 3 days of being off the antibiotic and still no regular stool I called and asked for an abdominal x-ray. The Dr. had just saw her the day before so I felt nervous asking for this procedure but knew it was what needed to be done. She agreed with out hesitation. We are blessed to have pediatrician who trusts me and knows that I don't overreact. She knows that I am the primary care giver and that I know my daughter better than anyone. We were getting the x-ray performed in less than an hour.

You may (or may not) be wondering how I even knew to ask for the x-ray. Well that's the cool part. Although I never asked to part of this amazing community, I am, and honestly I couldn't be luckier. Through technology, I am surrounded and supported by wonderful mothers (and some fathers) whose children have Spina Bifida just like Annabelle. They know exactly what I am going through because they have been there. They understand and share in my deepest sorrows as well as celebrate our amazing joys. This community shares - they share their knowledge, their resources and their courage. So when I noticed (on FaceBook - yeah for FB) that anther family was having similar issues - slow weight gain, chronic diarrhea, etc... I reached out to her. She didn't just respond, she partnered with me to see how she could help Annabelle. She outlined for me in detail all that they had been going through and all the steps/tests along the way that got them to where they were now. She mailed me (good old snail mail) literature on high calorie diets. That is how I knew what to ask for - that is how I had the courage to ask for a procedure that had never crossed my mind for the several weeks leading up to where we are today. Thank you Lisa M for all of your help. I pray that Evan continues to make awesome progress and that Annabelle will follow his lead.

Okay, so we got the x-ray and low and behold our girl is packed with poop! The pediatrician and the GI. Dr. conferred and the decision was for us to up her Lactalose (poo poo medicine) from once a day to 3x a day and to perform a Fleet enema and they would call me in the morning. Well, we did those things and saw very, very little change. It was pretty discouraging since that seemed like our best bet to keep Annabelle out of the hospital for a total clean out. When Annabelle woke on Thursday morning she was in visible pain. She was bearing down trying to poop (which she never does) and she was unwilling to eat or drink. Then came the vomit - big nasty, smelly vomit. Boy do I hate vomit! Things got a little intense at this point and it because clear that more intervention was needed. The GI Dr. was able to get us in at lunch time and in light of the fullness of her belly, his and our inability to get any poop out and her newly developed fever (101.8) he felt he needed to admit her for full testing and a total clean out. Although very disappointed (yes, I cried) I knew this was the best and safest decision for Annabelle. However, when you have 3 kids and you have to be at the hospital with one of them, that means two will be left behind. This part is very hard for me. I feel bad not being there for the boys. I am their mom and I am responsible for them. This goodbye was especially hard for me. Benjamin had been such a good boy all morning. When I was attending to Annabelle's needs (poop, throw up, etc.) he just played quietly and didn't get in the way. He could have whined and tried to get the attention on him - he didn't. He was a true angel!

Check in was extremely smooth. Our Dr. actually called and pre-admitted us and the hospital called me at home when Annabelle's room was ready. I was able to go home, get packed up and get the boys situated. We avoided the whole ER scene and that was AWESOME! Once we got here it hasn't been so awesome though. Don't get me wrong, the nursing staff has been great and we are actually in a private room. They call it "isolation" but I call it PRIVATE!!! I was told that because she is being tested for a poop infection that her orders came over that she was to be isolated. No complaints here.

She has had the following procedures performed in the first 5 hours here:

vital signs taken
catheterized for a urine sample
blood drawn
nose swabbed for infection
poop tested for infection
IV started - receiving fluids and medicine
NG tube put down her nose to start the medicine that will "clean her out"

And through all of this she is unable to eat or nurse. It is so difficult to see her so uncomfortable and not be able to do anything for her. I just continue to focus on the fact that relief should be on the way soon.

Here she is getting a surprise visit from Emi, her physical therapist. Although Annabelle wasn't feeling well she was very happy to see Emi. She showed Emi her happiness with a smile, kiss and a wave. She is such a sweetie!

This girl LOVES her daddy!

Unsuccessfully trying to get comfortable.

She wasn't interested in sleeping in her bed so we both slept in the chair bed for the majority of the night. I think I need a neck massage to say the least!

There is no question the medicine is working because A LOT for poop is coming out. This is truly the grossest thing I have ever experienced. We are hopeful to have more answers by midday on Friday. I will update as time permits.

As always, thank you for your continued prayers for our family. Specifically, If I may ask that you please pray for comfort and healing for Annabelle, love and understanding for the boys and strength for Branden and I. Thank you to all of those that already expressed your love and support on Facebook.

*this was a super long post and I am exhausted so no proof reading is happening this morning :-). Thanks for understanding!

Happy New Year from our family to yours!

2010-12-31T21:24:00.000-08:00

What a year it has been ~ filled with lots of ups and downs but we made it! Here's looking forward to a happy and health 2011!

Our little Christmas Princess

2010-12-26T11:19:00.000-08:00

Guess who's ready for her close up

Annabelle and HER boys! She's a wild woman!!

Such a wonderful night ~ such wonderful children.
Such blessed parents!

Chatting with the Jolly guy

2010-12-22T23:11:00.000-08:00

I LOVE that she wasn't scared at all. As you can see, it took a few minutes to get her to look away from him and at us. By the time we got her attention the boys were done smiling. Isn't that always the case. Oh well, the pictures aren't to bad for a free, unexpected meeting with Santa.

Please click HERE if you would like to see more pictures from this fun family night.

More of the littles

2010-12-20T14:06:00.000-08:00

That's what I call Ben and Belle. On Tuesday's and Thursday mornings if Annabelle doesn't have any appointments they like to stay in their jammies and play until we pick Jack up from kindergarten. They are so very cute together!

She's a car girl, what can I say. Maybe she will get some "girl" toys from Santa

Someone sure loves her big brother!

A Christmas Miracle

2010-12-10T20:46:00.001-08:00

That title may seem a bit over the top for some, but honestly that is what my heart feels tonight. We have been given an amazing gift today and we feel so very blessed.

In yesterday's mail I received a $4,800 bill from one of Annabelle's Dr.'s. Obviously, not exactly what you want to get two weeks before Christmas. It wasn't the bill itself that sent me into tears but the note on it that said our account had been sent to their attorney's for collection and that payment was due NOW. I knew we had large bills with this particular Dr., but I had been in communication with someone from the accounting dept. to try and get them taken care of. Our insurance company has paid VERY little (approximately 20%) on each of her six surgeries performed by this Dr. so I have been filing appeals with the insurance company to have the bills reviewed. Well, as you can imagine getting this bill stating due now and being told we were sent to collections was very scary. Branden and I have very good credit and we always strive to pay all our bills on time (even when we don't have the money). So, I called the office and left them an emotion-filled message asking (begging really, through my tear-filled voice) that they not send us to collections. I let them know that I have made payments and have also tried to arrange a payment plan for the balance on several other occasions. Those of you on Facebook saw that I was super distraught by this whole situation.

Well, I moved forward as best as I could with the night. Jack could see that I had been crying and his sweet little heart was sad about that. When I was cathing Annabelle I received a call, but couldn't answer it. It was the Dr.'s office saying that the woman I had been dealing with was no longer there and that she was sorry that her letter had upset me so much. She said that she was going to speak with her Manager in the morning and that she and I could work out the payment tomorrow (Friday). She assured me it would be okay. I felt a bit better but still stressed about paying $4,800 right now.

Well, today came and guess what - it IS going to be okay. That same lady called me back today and told me that the Dr.'s office is going to accept what has been paid and that they are going to WRITE OFF THE $4,800!!! Can you even believe it?? I was in shock - tears, tears and more tears. I scared poor Annabelle but I could not even control my emotions. I went down to the office and brought them cookies and brownies and lots of pictures of Annabelle. It was a major hugfest between myself and the Office Manager. She was so sweet and was so happy to see how big and adorable (her words) Annabelle had gotten. She assured me that the bill has been taken care of and then she wished me a Merry Christmas.

Now you tell me if this wasn't a Christmas Miracle.

Decorating the Christmas Tree

2010-12-10T00:03:00.000-08:00

The many faces of Annabelle

2010-12-09T00:32:00.000-08:00

There were just too many cute ones I couldn't choose~

Walker for the Weekend

2010-12-08T00:49:00.000-08:00

On the Monday before Thanksgiving Branden went to PT with Annabelle so that I could be with Benjamin at his Thanksgiving Feast at preschool. When he came home he excitedly told me that Emi, Annabelle's therapist had sent the walker home with him for her to uses at home over the Thanksgiving holiday. I won't lie, I had mixed feeling about it. It's silly, I know but it just felt sort of weird to have it in our home. I guess it's easy to be "comfortable" with it when we are at PT exercising, but I wasn't totally ready to have it in our home or our everyday life.

Well, those feeling QUICKLY changed when I saw how excited Annabelle got when I put her in it for the first time that night. She was SO excited and I swear she practically ran (in the walker) across the living room floor. I didn't even have the camera out but I can assure you I will never forget how AWESOME she did and how very proud I felt. I sent Emi a text right then begging her to talk to Annabelle's Orthopedist about getting us a prescription so she could get her own.

I think being nervous or even fearful of her equipment (braces, walker, wheelchair, etc.) is natural and I am not embarrassed or ashamed to admit it. The truth is that it all really scares me but I know now that each new "thing" will become easier and feel more comfortable over time and honestly, the smile on Annabelle's face as she gains new freedoms from her equipment is all I need to see how wonderful this stuff is.

Here she is on Saturday, November 27th enjoying some time in the walker in our kitchen

Annabelle loves playing with the gears and magnets on the refrigerator. I normally push them all to the bottom so that she can reach them when laying on the floor. Today however she got to play standing up and she was loving it. Here's a short video of her playing.

I doubt that anyone would disagree that Annabelle's progress is a direct result of her amazing spirit, drive and can do attitude, but I think it's important to point out that I believe Annabelle's success is also due in part to her wonderful big brothers. They are always encouraging her through their words and their actions. They love her so much I can barely handle it. They know that I can't help out in their kindergarten or preschool classes as often as I (they) would like because she has PT on Monday's & Wednesday and OT on Fridays but they don't complain. They just ask at pick up "if it was a good session and if she worked hard". It warms my heart to know that they will always have each other ~ she's their flower.

As always, THANK YOU for taking the time to share in Annabelle's progress with us. We are so very proud of her!

Foot Bowling

2010-11-28T21:58:00.000-08:00

Have you heard of it? It's Annabelle's latest new sport. Okay, not really, but it is super cute to watch. These pictures and video are from November 8th. Thanks for caring enough to take a look.

Check out our little athlete!

We are so lucky that Emi, Annabelle's therapist makes exercising so much fun each week. Can you even believe how strong her legs are getting?

Halloween 2010

2010-11-27T19:57:00.000-08:00

Annabelle, our little kitty Cat

Annabelle LOVED her costume. She was all smiles all night!

She loved hanging out with her big brothers: Jack "the knight" and Benjamin "aka Lightning McQueen"

It was a very fun, low key night spent with family and friends.

Stepping off the treadmill

2010-11-26T23:48:00.001-08:00

During PT last month (October 27th), Annabelle's therapist thought we should see how she would do with a walker verses being on the treadmill. As expected she took right to it.

She's a bit distracted in this video but is still making great progress.

I just re-watched the video and she's super distracted. We had a "guest" at PT that day and Annabelle was very interested in her. It's still super exciting to see the progress she is making since she got her AFO's in September. Thank you for celebrating her success with us!

Our big girl is learning to color

2010-11-26T20:30:00.000-08:00

Annabelle wants to do everything her brothers can do - I LOVE that!

Pumpkins and Apples and Walking OH MY!

2010-11-26T14:52:00.000-08:00

Last month (October 9th) we took the kids for a super fun day of apple and pumpkin picking. Here's a few pictures of Annabelle from that day.

Okay, so she's isn't walking (yet), but her AFO's are really helping to strengthen her legs and she's taking every opportunity to practice walking. She's doing so well, if I do say so myself.

Click HERE if you would like to see and read more about this super fun pumpkin and apple picking day with the family.

How my day started

2010-11-18T20:04:00.000-08:00

When I heard Annabelle waking up on the monitor this morning, I asked Ben to please go in and be with her until I could get her. He gladly trotted off to her bedroom. When I walked in this is what I found - adorable, right? I had to run and get my camera.

These two are just so sweet to one another.

They were just giggling and giggling - I loved it!

siblings - what a blessing!

Feeling so much better

2010-11-14T19:53:00.000-08:00

I'm happy to report that Annabelle is feeling SO much better. We made it out to the park for a little bit this weekend and we could tell she was happy to have some fun again. She is still having moments of intense crying and eye rubbing, typically right after her nap. We are not real sure what this is about - is it pain, blurriness, or what? But she works through it after what seems like an eternity but is probably more like 10 minutes. We are hoping this will subside very soon. She also has had very goopy, glued shut eyes when we go in for the late night cathing. We have had to clean her eyes with a damp cloth to remove it. I read this was normal for the first few days so I am hopeful she won't have this much longer.

I figured everyone would like to SEE that she is actually doing better, not just read that I said so. Here are some pictures from this weekends park visit.

We go back to the eye Dr. next Thursday for a follow up to her surgery

Very quick update

2010-11-12T21:30:00.000-08:00

Our sweet Annabelle is resting so very nicely this evening. She had a good day filled with lots of napping and cuddling with me (mommy). Her eyes are red but the swelling has gone down significantly. Thankfully, she does not seem to be in much pain just a bit uncomfortable at times. We return to the eye doctor next Thursday for a follow up on the surgery.

Rest well blogging friends.

Recovery

2010-11-11T19:45:00.000-08:00

Honestly, I am so wiped out from the last 24 hours that I don't have to much to say tonight. You can see in these pictures she is sad and uncomfortable. It was very difficult to come to the recovery room to a hysterical baby who was crying tears of blood. She didn't want to nurse (this is very uncommon for her) but did eventually drink about 8 oz of juice from a cup. They gave her 3 doses of pain medicine in the first 30 minutes because she was really struggling to calm down. Finally the medicine kicked in and she was zombie-like. This was scary for me to see.

After resting a bit the nurse offered me something to drink and some crackers. Annabelle heard the word cracker and she immediately sat up - she practically shot up off my chest. I told the nurse I thought Annabelle wanted some graham crackers. Boy was I right! Annabelle took those crackers so fast - she had one in each hand and was shoving them in her mouth. She also ate some fruit and oatmeal baby food I had in my bag. The nurse was very comfortable with how she looked and they released us at about 10:30 am - just 3 hours after the surgery.

She didn't sleep too much but would fall in and out of sleep. We all rested a bit in our bed and she returned to nursing as well as eating an almost regular diet this evening. She is currently only taking Tylenol for the pain but seems to really need it as it gets close to the 4 hours being up. She also has antibiotic eye drops that we (Branden) will need to put in twice a day. The corners of her eyes are still very red and she seems to be having a bit of difficulty focusing in on us, but it is still very early and we assume the eyes must have some healing they need to do.

We appreciate your continued prayers for Annabelle's full recovery and prayers that this surgery was a success.

The pre surgery wait

2010-11-11T08:15:00.000-08:00

yep, Annabelle was sporting her new REDEFINING SPINA BIFIDA shirt this morning

Reading with Daddy

Waiting for the beeper to go off to let us know it's time

That's our girl - happy, happy no matter what.

Once they were ready for her, I was able to go into the OR with her. I held her hands and talked to her while they administered the gas to put her to sleep. She was afraid but didn't cry much. She didn't fight and fell asleep quickly. The Dr.'s and nurses promised me they'd take good care of our sweet girl - I pray they will.

I came out a 7:35 and was told the surgery should take about 30 minutes. it's 8:15 now so we are hopeful to hear something very soon. Thank you all for being with us today.

Our first planned surgery

2010-11-10T19:50:00.000-08:00

is tomorrow morning (Thursday, November 11th) and I have to admit that I am feeling really stressed out about it. We have to be at the hospital at 6 am and the surgery is scheduled for 7:30 am. I am thankful she is the first surgery of the morning but, yikes 6 am!

Strabismus surgery is certainly less invasive than then any of Annabelle's previous surgeries, but it's still surgery and she will still be under general anesthesia. I think having it "planned" is giving me much more time to think and worry about it.

We certainly appreciate knowing that all of our family and friends are praying for both Annabelle's quick and painless recovery and for the doctor who's performing this delicate surgery on our baby girls eyes. Barring an complications, Annabelle is expected to come home sometime tomorrow - thank goodness. I know we all sleep much better in our own beds.

Mom and Fred - thank you so much for keeping the boys overnight and tomorrow. I know they will have a blast!

Dad - I'm sorry I said not to come to the hospital, I hope you understand. When Annabelle is in surgery I feel like I am paralyzed with fear until the Dr. comes out to tell us she is awake and in recovery. I just somehow do better pacing/blogging and being on my own during these overwhelmingly stressful time.

Please know that we feel your presence and love around us while we wait. I will update again sometime tomorrow.

Annabelle's AFO's (week 3 - kicking)

2010-11-08T16:00:00.000-08:00

September 29th - kicking the ball on the treadmill

This was the end of her PT session and she was really wearing down, but in true Annabelle fashion she did as we asked with very little fussing.

She had just kicked the ball, but of course I wasn't video taping. Emi told her if she did it again we could be done. Oh and BTW - Annabelle made sure Emi remembered the deal they made :-)

We had no idea at the time, but just one day later Annabelle ended up in the ER at Long Beach Memorial because she had a raging UTI. It's amazing and inspiring to me how hard this little girl works.

More great videos to come - I'm on a roll now! Thanks for checking in.

Annabelle's AFO's (week 2 - the progress continues)

2010-11-07T20:26:00.000-08:00

September 22nd - waiting to start PT

She wasn't too sure about the treadmill at first but quickly became more comfortable.

We have been patching Annabelle's right eye for 1 hour each day for a few months now. I try to remember to do it while we are at PT so I don't have to think about it again later in the day. The only down side to this is that I love taking pictures during PT but not so much with the patch on.

Annabelle's therapist was quite impressed that she was able to be vocal while walking on the treadmill for the first time. She said many kids cry the first time and if they aren't crying they are concentrating so hard that they don't talk. I was overwhelmed with happiness seeing her "walk" on the treadmill.

Thanks for following us on this journey - more exciting progress to come!

Annabelle's AFO's (part 1 of this awesome story)

2010-11-05T23:57:00.000-07:00

On September 16th Annabelle and I nervously waited for her to be fitted for her first pair of AFO's. It was exciting and scary all at the same time. I had such mixed emotions at first which were quickly replaced by feelings of pride, hope and excitement for what these awesome new braces might do for her.

The "fitting" went well, considering I had crazy boy Ben with me. A few minor modifications needed to be made but Peter was very thoughtful and offered to overnight them to our home so she would have them for the weekend.

THEY ARRIVED!!
I have to admit, I didn't rush to put hem on her right away. I looked at them when the package came but opted to wait for Branden to get home before trying them on her. Thankfully after her bath Branden was eager to put them on her. They are really so cute and fit her very well.

We didn't have any shoes ready for her, but stood her anyways. We were so pleased to see the excitement on her face. It was immediately evident that she was going to like standing up

This isn't an AFO picture but I loved how she was digging through her books. She had them on and surprisingly they were not hindering her floor mobility.

Saturday morning we broke out "the shoes" and did some real standing. These were loaner shoes from her therapist that were way to big but they did the trick. She was SO excited to be able to play with her toys at eye level - such a great new experience for her.

September 20th - Her first time at therapy wearing AFO's

Here she is waiting in the lobby for Emi, her therapist to arrive.

Aren't her little pink shoes so adorable?

Annabelle's willingness to try whatever Emi and I throw at her is AMAZING! She wasn't loving this at first, but trusted Emi and was willing to give it a try.

Annabelle doing a silly little dance for her Dad

Check out that smile and tell me she's not having a GREAT time!

As you can see, Annabelle had a GREAT first week in her AFO's and is progressing by leaps and bounds. Please check back for the next installment of "Annabelle's AFO's" I know you won't be disappointed!

Why I shouldn't write updates...

2010-11-02T18:25:00.000-07:00

Because in my world the minute I hit publish everything seem to change.

Yep, our sweetie girl has another UTI :-( Crazy, I know! She woke fine, or so I thought. Here she is playing, I mean sitting up :-) with her brother right after breakfast.

But shortly after this she had 2 super yucky looking caths and was vomiting by lunch. She then became super lethargic and plain old sad. I was pretty sad too.

Thankfully, our pediatrician was able to get her in this afternoon and test her urine. Apparently, the initial dip was pretty bad and of course the fear with Annabelle is always dehydration during those first few days of waiting on the urine culture so they gave her a shot of Rocephen (sp?)

Obviously this is disappointing, but we are hoping that catching it early will help with the recovery time. She is scheduled for eye surgery next Thursday, November 11th so we really need her to be infection free very quickly.

As always, your prayers and positive thoughts are much appreciated. more cute pictures to come soon.

updates

2010-11-02T01:16:00.000-07:00

I've been pretty bad with updates lately - sorry! Here's some of the latest medical news.

I wanted to let everyone know that the renal ultrasound that Annabelle had on October 12th showed NO hydronephrosis - YEAH!! This is really good news! We were just overjoyed to learn that the Ditropan and the every 3 hour cathing routine is working. For those that remember she had mild to moderate hydronephrosis on both kidneys just 3 months ago. She does still have Grade 4 kidney reflux (on a 1 - 5 scale with 5 being the worst) but we are hopeful that to will start to improve with the medicine and cathing routine. More testing to happen in December.

We went to Spina Bifida Clinic on October 19th. As expected Annabelle impressed them with all her new skills, happy smiles and fun new words like hi, bye, cat, dadda, momma, Jack, Ben, Baby Belle, bug, fish - some days she says more, other days lots less. She decides how much she wants to say and when :-)

Sitting up to be weighed at clinic for the first time - very big girl!

She was all smiles sitting on her daddy's lap

She showed off her standing skills for Peter (the man who made her braces) and for her Rehab doctor.

*fyi - she is wearing her AFO's under pants in this picture. I have lots to update on her progress since she got her AFO's and how they are helping her and also to give a clear picture of what she can and can't do (right now).

She sat in a chair playing for probably 20 - 30 minutes

She was having a great time trying out all the toys at the table

She had Ortho Clinic today (11-1-10) and all went went. He seemed overall pleased with how she was is doing. There was some discussion about possible tendon surgery because her feet pull upward, but he said that wouldn't be until she's closer to age 3 or 4. I'm choosing not to worry about that too much since she is only 15 months now. He also mentioned that he sees her potentially needing higher (above the knee) braces in the future, but felt what she has now is good for where she is at developmentally. Overall, I felt it was a positive visit. We will return in 3 months and will discuss the possibility of getting her a walker at that time.

Someone got a hair cut

2010-10-29T20:05:00.000-07:00

Last Friday night (10-22) we went over to my Dad and Alex's house for dinner and an overdue first haircut for Annabelle. Somehow our sweet girls bangs had gotten super long. It wasn't really a problem when she would leave her cute little hair bows in, but since she never did, well her hair was always in her eyes.

She was all ready to get started

In typical Annabelle style she was a VERY good girl.

Oh no, where did our baby go?
She has been replaced with this (adorable) big girl!

THANK YOU GRANDMA ALEX FOR DOING SUCH AN AWESOME JOB! WE LOVE YOU VERY MUCH!! XOXO

Perfect Imperfection

2010-10-20T23:14:00.000-07:00

Painting by: Sarah Stevens (found on Flicker)

This past July our family had the great privilege of meeting up with several SB Moms and miracles. It was so awesome to finally meet in person (and hug!) these families I felt like I already knew so well. These are moms that have been there encouraging and supporting me since I was pregnant with Annabelle. These are moms who regularly share in my joys and disappointments. These are moms who are also walking this amazing journey and have become some of my very dearest friends.

Sarah, mom to Katie, who is another local SB mom was kind enough to host the barbecue. We had such a blast just being together, sharing stories, looking at each of our kids back scar and just marveling at their progress. It was a night I know I will never forget. Not only do we have our memories and awesome pictures from the night but we also each have a beautiful handcrafted necklace given to us by Karen, mom to Carson (pictured below last on the right).

Here we are posing with our new SB perfect imperfection necklaces

Joanna, Me, Sarah, Leigh and Karen

This beautiful description was included with each necklace.

Perfect Imperfection

The necklace is long, worn so that it may center down to where we carried our precious children, our bumps. The place where so many times unconsciously our hand would tenderly fall as we would silently breathe a prayer for the precious life we carried.

Yellow is the dominant color. The color yellow represents Spina Bifida awareness. The color yellow is cheerful, optimistic and an attention getter. Our children reflect this color with their optimistic, happy, captivating smiles.

Red is the complimenting color, representing us mommies. Red is the most emotionally intense color; red stimulates a faster heartbeat and breathing. It is also the color of love. As a mom we are the most emotionally attached person to our child, and so often this attachment has stimulated in us a faster heartbeat and quicker breathing – remember the day you found out you were pregnant, and also the day your child was born. In the course of having a child with SB a quicker heartbeat seems to be our new way of life. But this is all a testament of our love for our children.

And finally, as the focal point, there is a bead which stands out. To the untrained eye this may appear as imperfect, as if it doesn’t belong with the necklace, as if it removes some beauty from it. But, we know this is not the case. We know that this bead speaks straight to our heart and this bead is the most beautiful of all. You see, we were once told crushing words “You’re child will be imperfect” and we have had the privilege to see how perfect their imperfection has become.

If you would like to see more great photo's from this wonderful afternoon please check out the following blog post. Both ladies really captured the beauty of the day.

Joanna's pictures

Sarah's pictures

Here are my pictures:

I love the pictures of our boys with Katie. They got along so well and really had fun playing together. They were SO excited when they found out that she had Spina Bifida and a shunt just like their baby sister. I love that they weren't intimidated by her braces and that she had so much fun playing hide and go seek and chase with them. She didn't slow down a bit! She kept right up with my two little wild men - and that's hard to do! She and Jack even had a bit of a crush starting until Katie's grandma and I stepped in to cool things off a bit :-) It was a special night for all of us.

Today's prayer was

2010-10-20T20:12:00.000-07:00

Amazing
Powerful
Productive
Encouraging
and SO much more

A heart felt thank you to all who prayed today for the unborn and born that are affected by Spina Bifida. More than 3,000 people, probably a lot more when you factor in prayer groups and those who aren't on FaceBook, took time today to really focus on Spina Bifida. I truly felt a strong sense of unity and love. It felt so very good to get on my knees and talk with the Lord about what has been on my mind and heart lately.

I 100% believe that miracles happened today - somewhere, somehow our prayers worked as intended. It may not have changed the fate for the one family who so needed our prayers today but I am confident that our prayers we heard and felt across the country. Thank you for joining me in this amazing effort to raise awareness and pull from God's amazing grace.

I will continue to share on my blog what life is like raising a child with Spina Bifida in an effort to REDEFINE Spina Bifida - just a hint, it's nothing short of wonderful!!! I LOVE my life and I LOVE my daughter who is fun, playful, happy, beautiful, silly, and so many other things and happens to have Spina Bifida.

Spina Bifida Kids Worldwide Day of Prayer

2010-10-18T09:36:00.000-07:00

WHEN: Wednesday, October 20, 2010
WHERE: Wherever you are
TIME: 9 am PST (10 am CST / 12 pm EST)

As most of you know, October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.

So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.

We will begin at 9am PST (noon EST). Pray for as long as you feel moved. Pray individually or pray as a group. On your knees, at your desk, while driving your car … the logistics do not matter.

Here are a few things you can pray about specifically:

1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.

2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.

3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.

4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.

5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.

Feel free to add other suggestions for what we should pray. And please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers.

“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)

I assure she is not suffering! This little girl loves life and we love her!

24 weeks

2010-10-15T00:19:00.000-07:00

WHY in the world is it legal to terminate your pregnancy in some states up to 24 week? I'm sorry but this is just horrible and completely breaking my heart tonight. I recently came across the blog of a woman who is 19 weeks pregnant with a child who has Spina Bifida and she is seriously contemplating termination. I understand she is scared, I understand she is worried how this baby's condition will affect her other children - I UNDERSTAND. However, the thought that we can just get rid of our babies because the doctor tells us they aren't perfect is just heartbreaking.

Although, I have always been pro-life personally, I have never felt it was my place to tell another person what they should do with their bodies. I think this situation hurts so much more because what she is saying is that she would chose not to have Annabelle or any of our new friends with SB to be her child. I just don't understand especially because she openly admits that she has read all our blogs, seen and heard our stories but still thinks possibly this baby would be better off not being born. I just don't get that at all. She also already has 2 other children so she knows the joy that children bring. My friends and I have reminded her that our children are much more than their disability. Our children are as much of a blessing as any other child. I reminded her that sadly ANY child could be diagnosed with a disease or illness at any point in their life and most parents wouldn't stop loving or parenting them. You just love your children unconditionally and you work it out. You find a way to be better because of it.

She actually created a poll asking peoples opinion if she should have the baby or terminate - crazy! The saddest part is that people are actually voting and choosing terminate. Are we that selfish of a society that a baby that might be a bit harder or seem like an inconvenience is so easily discarded. I am not saying this woman is taking it lightly - I know that she is agonizing and is scared but what about the random people (45 the last time I checked) who are voting for her to terminate. It's just awful in my opinion.

I've spent way too much time tonight looking at pictures of 24 week old babies. Yes, babies that is what it is growing in her belly. I can't get the images out of my head. I think about how completely in love we were with Annabelle by 24 weeks and the thought of terminating her is just a nightmare.

By the way - a 24 week old baby can live outside of the womb! I found this video tonight.

I PRAY THAT WHATEVER THIS WOMAN CHOOSES TO DO SHE IS ABLE TO LIVE WITH HER CHOICE. I PRAY THAT IF SHE KEEPS HER BABY SHE WILL LOVE IT COMPLETELY AND UNCONDITIONALLY. I PRAY THAT THIS CHILD WILL GET A CHANCE AT LIFE.

**comments have been turned off**

Still here

2010-10-11T22:25:00.000-07:00

I feel like so much has happened in the past few weeks, both good and bad that I want to share. I'm just really struggling to find the time and energy to do it. Thank you for continuing to check in on us and know that some great pictures and video of Annabelle should be coming soon.

What I'm hoping to blog about soon ~

Annabelle and her new AFO's - really great stuff!

Annabelle's Strabismus Surgery scheduled for the morning of 11/11 at Millers Children Hospital.

Our fear that we won't be able to keep Annabelle infection free. Sadly, she got another UTI that landed us in the ER on 9/30. She did 8 day's of Cipro and then back on her Nitrofurantoin which for some reason she keeps throwing up this week. Her urine looks a little cloudy today and I am just praying that it doesn't turn into anything.

Annabelle is having another renal ultrasound in the morning (10/12). It won't be painful physically but the results will probably hurt. I seems that things keep getting worse with her urology. During her last urodynamics the Dr. has increased her reflux to Grade 4 and bilateral - disappointing. We will see what tomorrow brings.

I came across this picture last week and realized I never shared it. I just love her sweet face here. This picture was from August 31st when we spent a few hours at Mother's Beach.

Just in case anyone was wondering - YES, she is worth every bit of worry, fear, stress and expense! Annabelle is such a source of happiness in our house - she makes us all smile even during the difficult times.

Helping in the garden

2010-09-25T08:02:00.000-07:00

Click HERE if you would like to see more pictures from our summer garden.

One more thing to do each day

2010-09-23T20:27:00.001-07:00

Last month, before the latest shunt revision we took Annabelle to the eye doctor to discuss some concerns. We had been noticing that her left eye was turning in a bit and after bringing it up to the pediatrician she agreed it should be checked out. We met with Dr. Clark, a highly recommended Ophthalmologist and he confirmed that the eye was indeed turning in. Having him confirm this was disappointing, but not the worst thing in the world. However, I have to admit though, I was sad that there was yet one more thing "wrong". One more diagnosis to add to the list. It's called Strabismus and it actually quite common - click here if you are interested in learning more than anyone should ever need to know about it.

I'm going to be super honest here - it's my blog so I can do that, right? Annabelle had just gotten fitted for her AFO's a few days before this appointment so the thought of her having leg braces AND glasses just did not sit well with me. I know it sounds superficial and anyone that knows me, knows that I am not that way at all. But it did make me sad for her. Our daughter is beautiful inside and out, but we live in a world where people are very focused on the outer appearance. Annabelle will have leg braces and maybe more "equipment" throughout her life so honestly I didn't want her to have one more thing to get in the way of her connecting with others. As you can see from her pictures she is so expressive and has an amazing smile I didn't want that covered up.

After all the testing and three rounds of eye drops the Dr. gave the good news and bad/good news (confused?). Well, he determined that her eye was healthy, no redness or swelling and had good focus - this is good news. The bad/good news is that glasses will not correct her condition. This is bad news because if it gets worse then surgery will be necessary but it was also good news because as I mentioned before I didn't want her to have to wear glasses :-o

So we left with instructions to patch her right eye (the stronger one) for 1 hour each day and return back in one month for a reevaluation. We have been doing it almost every day with the exception of the days leading up to and after her latest revision surgery. She does not like it but in typical Annabelle fashion she rises to the occasion. She kind of yells at us in a crazy voice telling us that she is very unhappy and doesn't like it but then moves forward. She's visibly happy when we take it off and sometimes tells us in a similar voice how she felt about it but then once again moves on.

She is once again inspiring me to not complain as much and to try and roll with the punches as best as I can. She is such a trooper!

I have to admit that I don't think there has been any improvement yet, but considering she had surgery in the middle of the month I think he will have us continue this routine for a while and will monitor her progress for a few months. I will update again after her follow up appointment on October 5th.

Update on Annabelle's recovery

2010-09-17T22:20:00.000-07:00

Sorry for the lack of updates since we got home from the hospital last Saturday. As you can imagine the first few days home were tiring and I always seem to struggle a bit adjusting to "normalcy" after a hospital stay - especially those that involve having surgery. Then of course we had to jump right back into life. This week Jack had his first full week of Kindergarten, Benjamin started preschool and Annabelle got her first pair of AFO's. Big milestones for my little people! Pictures of all to come soon.

However, in typical Annabelle style she really bounced back well. The first 24 hours she was still out of it but at about 5 pm on Sunday she woke up from a long nap and you could just tell she was feeling better. I took this quick video of her to capture her beautiful smile and amazing strength she was showing less than 48 hours after surgery. Yes, she still has that "funny" hair. Branden took the boys for the day to give Annabelle and I a quite house and I have to admit I was nervous to bathe her by myself. Thankfully, I have a wonderful hubby that is great at bathing the little ones, even when they have big an incision on their head.

I also want to thank you Rachel and Janine for the wonderful home cooked meals you brought us this week to help make the recovery days a bit easier. Words can not even express how much you helped and what a great relief it was to not have to cook those two nights. You are awesome friends and cooks/bakers!

Here's my three sweeties after their Daddy bathed them.
Look at that face. She just loves her brothers so much! They love her a ton as well.

Here she is trying to figure out what to do with this hair of hers. Sadly, Benjamin got the best head of hair out of the three kids.

I just want to say thank you again to everyone who has sent us love and prayers through their kind words. It is so special to read each of the comments on the blog or Facebook. I love when we get a comment from someone that you had no idea was even reading the blog. It's very exciting (yes, I am easily pleased). I'm a talker and since I am busy taking care of three little ones all day I don't get to talk with many people. So I love feeling like I have "shared" what's on my mind or what's going on with me and that my friends - both old and new, close and far are hearing me even if we actually rarely connect.

As always, thanks for caring!

Shunt revision # four

2010-09-11T21:11:00.000-07:00

Can you even believe it. Our sweet Annabelle had to have another shunt revision yesterday (9/10/10). As I mentioned in my previous post, she had woken up on Wednesday night vomiting and of course we thought it must be another UTI. After being checked out on Thursday it was determined that her urine was super clean and no bacteria was growing. This was exciting for us because it's been almost non-stop UTI's since about May.

On a side note, we had recently decided to take charge of our urology issues and seek out a second opinion for her care. We connected with a new urologist, Dr. Roger DeFilippo, who is based at Children's Hospital LA. He has an impressive background and seems to approach his patients with the proactive attitude we appreciate. We met with him a week ago yesterday and were immediately impressed with his communication style and were secretly happy that he has a satellite office in Torrance - which is WAY closer than Los Angeles.

So back to the latest shunt saga. After another 24 hours of almost complete lethargy and sporadic vomiting Dr. McCormick, Annabelle's super awesome pediatrician felt it was best that I bring her back in to be evaluated. The pediatrician's office is within walking distance from the hospital so once she ruled out all other possibilities she had us walk on over to the ER for a full evaluation. It was pretty much a whirlwind after that. Annabelle was immediately seen by her Neurosurgeon Dr. Javaheri who thankfully was available and at the hospital. You all already know how great we think he. They did a complete shunt series (x-rays and CT Scan) and the determination was to more forward with the shunt revision that night. Dr. J clearly could have pushed it until the following day, but he is a caring man and didn't want Annabelle to suffer any longer.

Drawing some blood before heading off to surgery

It's so hard to see your baby in pain and feeling scared

They asked me if I would like to accompany her into the operating room this time. I was able to hold and comfort her until she was "asleep" from the gas. Although, it wasn't pleasant to see her this way I appreciated being able to see the surroundings she would be in, talk with the surgical team (who seemed great) and to be with her until she was no longer aware of what was going on. I am hopeful that I helped a little to make her feel more comfortable and safe.

The wait was long and stressful. It seemed like it was taking forever and I was pacing up and down the hall waiting to see Dr. Javahery. When he rounded the corner I burst into tears and said "what took you so long?" He gave me a hug and assured me that everything had gone fine and that she was on her way to recovery. It turns out the anaesthesiologist had a tough time getting her IV in so that held up the surgery quite a bit. I was so eager to see my little sweetie so he and I headed on over to recovery to check in on her. She was crying a bit but looked and sounded pretty good. They were attempting to give her a bottle but little Miss Annabelle acted as if she didn't know what to do with it. She did however nurse like crazy once I showed up. I love nursing her. I think knowing she's my last baby makes me treasure that special cuddle time even more.

Check out her incision and new haircut

Today's recovery hasn't gone as smoothly as we had hoped. She seems to be in quite a bit of pain and my heart is breaking for her. She's been nursing non-stop mostly for comfort I am assuming, but clearly my body isn't used to this much nursing and I was fearful that she wasn't getting enough milk. We offered her some juice and she sucked down the 8 oz in record time. We think that, on top of the nursing and the IV fluids were just a little to much for little tummy. She vomited big, which of course sparked them to take her temperature and reassess if she was well enough to actually go home.

Resting comfortably with Daddy

We were anxiously awaiting the removal of her IV which we believe was causing her some additional pain.

Annabelle was sporting CRAZY HAIR after this surgery! She had a major Flock of Seagulls hairdo in recovery last night. (example below for those of you too young to remember.) It's toned down a bit tonight, but still kind of silly.

So after a few extra hours of observation and a few calls to her doctors the decision was to let us go home. Thankfully, there is enough confidence in us as parents that if she takes a turn for the worse they know we will bring her back. She threw up again right when we got home, but her temperature had dropped to normal. She actually seemed to feel better after she threw up and was visibly happy to home. I nursed her a little more and then put her to bed where she is comfortably resting right now. We will be checking on her in another hour and our hope is that her temp is still normal and her fontanel is still flat or even sunken in a bit. I will of course update if by chance she has any major changes in her recovery.

Once again we are humbled by the amount of love and support that has come our way for Annabelle. The text messages and e-mails through FB and on the blog are just heart warming. I truly have no idea how I would find the strength each day to keep it all together if it wasn't for you guys. Knowing we are surrounded by so much love means the world to us and although I don't seem to find the time to personally respond it is not because I don't read each one or that I don't care because I do - I really do! So, thank you, thank you and I look forward to sharing happy pictures and good news about Annabelle very soon.

Good night friends

Little Reminder

2010-09-09T20:03:00.000-07:00

I love how after a long day of feeling sad and frustrated because Annabelle is sick again I get a little reminder that this is only a moment in time. Annabelle WILL NOT spend her life being sick = I know this. My head knows this, but my heart is hurting for her today. They actually think it's the stomach flu - not even anything SB related :-) Who knows. All I know is she is sick and wants her mommy.

I saw this inspiring video on Face Book tonight and wanted to share it. Thanks for posting it Joanna. I think our SBKids Group from BabyCenter.com should do our own video. We have some SUPER cute kids!

CDC Video Player.
Flash Player 9 is required.

First AFO Casting

2010-09-04T12:25:00.000-07:00

We have had a VERY busy 10 days since I last wrote. I am happy to share that Annabelle has continued to improve each day and even had a few of her best eating days recently. It's apparent that if she feels well she will eat and she will poop - two very important things for her overall heath. We had several firsts (meeting new Dr.'s and new experiences) that I am excited to blog about this weekend.

On Wednesday, August 25th Annabelle was casted for her first pair of AFO (Ankle Foot Orthotics). We are very excited for her to get these next week so that we can start working on more standing exercises without fear of damaging her tiny ankles. She has shown a strong interest in bearing weight, when given the opportunity so I am excited to see what lies ahead for our sweet girl.

Here's some pictures of the process. We were pleased to have Peter (pictured below) making Annabelle's first pair since we met Peter on our SB Clinic "tour" when I was pregnant. He is a kind and caring man who took an interest in Annabelle from the beginning. He has seen her progress and seemed genuinely proud to be supplying her first pair. As expected, Annabelle was super great throughout the whole process.

He starts by measuring and marking her legs

Then he puts on plaster to make the cast

Annabelle saying she is "SO BIG!"

Then he cuts the cast off. He will use that mold to make the actual AFO

Then he starts all over again on the older legs.

ANNABELLE'S A ROCK STAR!

Thank you everyone!

2010-08-26T21:26:00.000-07:00

Just a quick note to say thank you to everyone who has reached out to us the last few days. Your kind words and prayers mean so much to us. So many great suggestions offered as well. I have been swamped today with the kids and another test for Annabelle but I will be writing people back this week.

Not to much new to report on her health. She's feeling ok for the most part. Her belly still seems to bother her but not as much as before. I don't think she's any getting worse, but honestly I don't think she's getting that much better. She seems as good as she did on Sunday night. They did another urinalysis today and may possibly do some other tests tomorrow or Monday. We will see.

I have some other stuff to share about what I have been doing to take back control of this UTI situation but I really need to clean up from dinner and fold a few loads of laundry so my blogging will have to wait for tonight but my THANK YOU could not!!

So much love and support out there - what an amazing thing!!!

Here's a cute little video from Sunday night when Annabelle started feeling better. After being so sick and sleeping so much she wasn't much interested in sleeping at bedtime so she hung out with Branden and I until after 10pm (don't tell her brothers!).

Annabelle has learned a new word.

but of course, she only says it off camera.

Bad to worse to you've got to be kidding me?

2010-08-24T22:03:00.000-07:00

Let's just start with this adorable picture of Miss Annabelle because the rest of this post is so NOT cute. This picture was from last Thursday at her PT session. Look how happy she looks. Can you believe that less than 10 hours later she was vomiting and that was the beginning of this latest UTI drama.

So, I don't even know what to say or where to start. I am so frustrated, worried, overwhelmed, stressed out, you name it and I felt it today. I know I should say "we've encountered a bump in the road" but honestly, I'm not feeling so encouraged right now. I'm leaning much more to the glass is half empty attitude right now. Maybe with some rest and a day of reflection but for now - pretty empty. I apologize if this comes out long and confusing, but honestly it is.

Since the boys woke at the crack of dawn today I knew I needed to get us all packed up and out of the house and plan for the boys to nap. For the most part the morning was going well until Dr. McCormick, Annabelle's pediatrician called. I could tell right away there was a problem and indeed there was (is). She said we have bad news Nicole (ok, right there, you know I wanted to vomit). She said that the final urinalysis report from Friday morning has come back and it looks as though the strain of bacteria (UTI) Annabelle has actually won't be cleared by Suprax (the medicine she was given a 10 day dose for on Monday). So, I'm thinking ok - bad news, we've lost 4 days of antibiotics and I paid for the prescription. Clearly could be worse. She'll call in a new RX and another co-pay later we will be heading toward kicking this UTI.

Well, she goes on to explain how this bacteria isn't really resistant or sensitive, I can't keep up with all the lingo, but regardless there are only a few options for fighting this bacteria. She goes on to explain that one drug is only given by IV but is quite harsh on the kidneys and in light of her kidney situation she wouldn't recommend that drug. The other drug, Ciprofloxacin is given orally however is not recommended in pediatric patients due to the negative side effects on the child's joints and or surrounding tissue - great. Here's a little blurb about this wonder drug I found on the Internet.

Ciprofloxacin used for Pediatric patients (1 to 17 years of age): Complicated Urinary Tract Infections and Pyelonephritis due to Escherichia coli. NOTE: Although effective in clinical trials, ciprofloxacin is not a drug of first choice in the pediatric population due to an increased incidence of adverse events compared to controls, including events related to joints and/or surrounding tissues. (See WARNINGS, PRECAUTIONS, Pediatric Use, ADVERSE REACTIONS and CLINICAL STUDIES.) Ciprofloxacin, like other quinolones, causes arthropathy and histological changes in weight-bearing joints of juvenile animals resulting in lameness. (See ANIMAL PHARMACOLOGY.)

She then she tells me that a call has been placed to an Infectious Disease Dr. for a recommendation on how to proceed. Great. Of course I am a mess by this time and in typical fashion the kids start to go crazy "needing" my attention because they haven't been getting it. The Dr. says that she will follow up as soon as she hears something.

I get a call about an hour or so later from the Dr. stating that the Infectious Disease Dr. has recommended starting with the Cipro (medicine discussed above) however if she starts to show any signs of increased infection (i.e. fever & vomiting) I need to take her to the ER where she will get an IV antibiotic for a few days and then be sent home with a PICC line. For those not familiar with a PICC line:

A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body and the extremities. And typically the upper arm is the area of choice.

As you can imagine this wasn't the greatest news to get. All the while I am still "trying" to hold it together because I had three kids to take care of. I was actually having this conversation in the parking lot of the community pool where I was taking them to swim today. She then says that the insurance company won't likely cover it (great, again!) because it's not a typical pediatric drug. Thankfully she said she would work on get it pre-approved due to medical necessity. Seriously, I have no idea what we would do without Dr. McCormick. She has been super wonderful with us.

A few hours later I got yet another call stating that the Infectious Disease Dr. had read the results from the urinalysis that was taken on Saturday night at the ER and since it appears that Annabelle is (somehow) responding to the antibiotic shots and the Suprax it is recommended that she stay on that and only go to the next level of drug (i.e. Cipro or the IV drug) if she starts to have increased symptoms or the urinalysis at the end of the 14 day treatment shows that the bacteria is still present - huh, big sigh, this is good news, sort of, right? It buys a bit of time for her to try and recover without using the more damaging medicines.

So, once I again I am "trying" to hold together and the fact is I wasn't - I am not. I've been crying, I am tired and I'm scared for our daughter. I was a mess - I couldn't even pull anything together for dinner, the boys and I were bickering all afternoon and no they wouldn't nap. It was a rough afternoon.

A bit later I got another call from the Dr. wanting to remind me how very important it is to have very strict hand washing procedures when I change and catheterize Annabelle. Of course we are always careful and she wasn't implying that we weren't but wanted to stress it in light of this new bacteria that has never been present before and is apparently quite dangerous.

SO HERE'S THE KICKER - HERE'S WHAT SENT ME OVER THE EDGE of an already rough day. I write the nurse (very nice lady) at the Spina Bifida clinic to ask if I could please arrange to have gloves sent in my next catheter order (which I knew was shipping tomorrow). She manages the order, so to speak because the RX comes from the Urologist and she coordinates. Side note: I asked for gloves on day one and she said NO - not necessary, huh? Not necessary? Well, now after 2 UTI's in the first month of cathing and some new crazy bacteria I figured the doc could write gloves on the damn prescription (yep, I'm getting mad all over again just writing this out). It's very frustrating to be told no for things that I truly believe are necessary are I'm paying for! We are NOT on any government assistance - we pay for our medical care and our medical supplies (no disrespect if you are - my point is why do you really care if I want a bit of extra protection that I will be paying for). So when I ask for gloves and am told they are a not necessary by the nurse managing her care it's very frustrating that in less than 20 day's of our new routine Annabelle ends up in the ER 3 times. Maybe the stupid gloves would have helped - who know, maybe not. Okay, so back to the e-mail. I shoot off the e-mail and in less than 5 minutes she calls me. We start off having a very nice conversation. As I said, she is a good lady and I am thankful for her friendship and the kindness she has shown our family this last year. She goes on to say "I think you are right, gloves are probably warranted under these circumstances. You know Nicole, we may want to get a whole closed cathing kit with Betadine, etc." This is when I loose it - lets rewind 1 month when I was placing my first cathing order I asked for 90% straight caths and 10% closed caths to be used when I was out with the kids, etc. I explained having 3 kids I could not be expected to be home every 4 hours and if I was out I should take extra precautions, etc... You would have thought I asked for the moon by the reaction I got. "Oh, no Nicole, that's not necessary. Just wash our hands or use anti-bacterial" We don't write RX's for cath kits - that's just not done, etc." I was really uncomfortable with this and pushed back, once again reminding her that it was me who would be paying the higher cost and that I was ok with it". Nope, didn't get the RX. Needless to say I have only cathed out once all month - I feel like a prisoner to this house and our cathing schedule. So, now after my daughter has some crazy strong bacteria it seems prudent - sorry that did not go over well with me at all. Yes, there was some raised voices and some strong concerns on my part expressed. The conversation ended well. She was very kind and listened and empathized with all that I had to say. So then 3 hours later I get a huge shipment of these CRAZY looking and CRAZY expensive catheters. I guess the ones we use now our share of cost is around $2 and these new one the share of cost is $7 - per catheter. We cath 5 times per day!!! I actually didn't care for these new ones at all and have asked to discuss different options tomorrow. We did however, lay her on that paper pad and cleaned her with the Betadine antiseptic - while my sweet little princess is just watching all the craziness around her. I hope she never has to experience the stress that we do now. I pray that life will not be this hard for her -will you please pray for her with me?

So, as the night was winding down and I started to nurse and rock her to sleep she started to act a bit funny. She was visibly uncomfortable and then she threw up big. What does this mean, I don't know. Either the medicine really isn't working and the infection is getting worse, maybe she ate too much dinner - I don't know. I do know that I am struggling, in so many ways. I know my boys are struggling watching me so sad and overwhelmed and preoccupied. I know tomorrow is a new day, but sadly today was supposed to be that new day - that day where she started feeling better - that on the road to recovery day. It was not.

As I sit and write this and watch her sleeping on the video monitor I know all I can do is wait and pray that tomorrow is a better day for all of the Summers Family. If by chance anyone made it this far in the post I will leave you with this picture from Sunday night. Sunday was the last night and really the only night of our weekend because Annabelle had been so sick. She was finally feeling better and we wanted to spend a little time together outdoors because it was so hot. We went on a family walk together - it was really nice. If you read our other blog you will understand the significance of this picture. It's kind of silly but also very special (to me) at the same time.

We were all together - as it should be.

**no time to reread and correct spelling errors. I have dishes, laundry and lunches to pack.

Guess where we are?

2010-08-22T00:25:00.000-07:00

Yep, we landed ourselves in the ER again!! This was so not what I had planned for this weekend. I do love spending time with my girl but goodness not like this. My heart was breaking as I walked out the door tonight. I really did not want to be gone when the boys woke. The last words I said to Benjamin before he went to sleep was that I loved him and that I promised to play with him in the morning. I know he was missing me big time today since I was taking care of Annabelle non-stop.

So after another full day of lethargy and then a significant decrease in her urine output Annabelle's pediatrician thought it was best that she get over to the ER for some IV fluids. I was a little nervous about going without our typical "call ahead service" from her neurosurgeon so I politely asked the on call pediatrician if she would be kind enough to call and let them know I was coming. She kind of laughed - like you have to be kidding me, but said "I doubt it will matter but I'll try for you". Well, thankfully she has more pull than she thought because we got the express treatment and were ushered back to a room within a few minutes of arriving.

It's 12:30 am right now and we've been here for about 3 hours. They did a urinalysis and some blood work and have determined that she actually is responding to antibiotic shots she got yesterday and today because her while blood cell count is significantly lower and a few other things he rattled off were looking significantly better. It did show that she was slightly dehydrated so they are gong to continue with the IV fluids, give another shot of antibiotics and then let us go home - yeah!!! I can't wait to go home and get some sleep. Thankfully she's sleeping right now while the IV fluids are going in. It's sad, but I'm getting pretty good at pulling together her hospital bag - notice she has her own blanket and her little lovey. It makes it so much easier for her to fall asleep. Although she is still super sleepy she does seem a bit more alert and not as uncomfortable. If all goes as planned we should be checking out around 2am - my fingers are crossed.

I can't believe it's already Sunday. The weekend flew by in an instant. Here's hoping for some major improvements tomorrow so that we can hopefully in a nice family day together. Good night friends - thanks for checking in on us.

Update on Annabelle - as of Saturday afternoon

2010-08-21T15:40:00.000-07:00

Sadly, she doesn't seem to be doing any better today. She saw the Dr. this morning and got another shot of antibiotics which I'm glad about but I had hoped to see some difference in her. She's still quite lethargic and is mostly sleeping or nursing (both on me). I could understand her acting like this if she was running a fever, but she's not anymore so it worries me. She does however seem to been in some pain in the abdominal area. She is scrunching up and wincing in her sleep. It breaks my heart.

They discussed hospitalizing her this morning because she hadn't responded to the medicine but they decided to give me another 8 hours at home to nurse and show good urine output when cathing before doing that. I was very thankful of course. It's very difficult to be away from the boys when she is hospitalized. They really have a lot asked of them when Annabelle is sick. Calling in babysitters (aka grandparents) at the last minute and watching their mommy get way to stressed out isn't the best for little people. I know they will be fine and certainly they are very lucky to have grandparents that are willing to come at the drop of a hat to be with them. It's just hard when we have family plans or I have an idea of what I want to do with or for them and then it all goes out the window because I have to take Belle to the Dr.'s or God forbid the hospital - it's just hard to balance sometimes is all I'm saying :-)

They are having her go back again tomorrow morning (Sunday) for another shot of antibiotics. Lets hope this next 24 hours shows some real improvements. She is also scheduled to have an upper GI on Monday morning to check for some digestive and swallowing issues shes been having. I am hopeful nothing will interfere with that since these are had to get appointments.

Thanks everyone for walking this journey with us. Thank you for taking the time to read this and thank you to those that comment or send notes. You can't even imagine how much those help. Your words are the sunshine on some of my toughest days. What a blessing you are all!

Some pictures to lighten up this downer of a post. Here she is with the two people that love her more than anything in this world!

yes, I took this one of us and it's not very good - oh well :-)
But this next one is super cute!

Look at that daddy's girl. She's saying Happy Birthday Daddy!

I read this last night and it really hit home for me so I wanted to share it.

Cake ingredients

Sometimes, we wonder, "What did I do to deserve this" or "Why did God have to do this to me?"
Well, here is an explanation.

A daughter is telling her mother how everything is going wrong. She's failing algebra, her boyfriend broke up with her and her best friend is moving away.
Meanwhile, her mother is baking a cake. She asks her daughter if she would like a snack. The daughter says, "Absolutely Mom! I love your cake!"

"Here, have some cooking oil," her mother offers.
"Yuck" says the daughter.
"How about a couple of raw eggs?"
"Gross Mom!"
"Would you like some flour then? Or maybe some baking soda?"
"Mom, those are all yucky!"
To which the mother replies: "Yes, all those things seem bad all by themselves. But when they are put together in the right way, they make a wonderfully delicious cake!”

We're making cake fellow moms. With every doctors appointment, therapy session, consultation. Every time we strap on those braces, run a catheter, give meds., do a breathing treatment. We are combining all the ingredients to make ourselves the most wonderful cake of all. Keep doing what you do, friends. Keep smiling, keep fighting, keep loving.

Expect the unexpected

2010-08-20T23:54:00.000-07:00

Or should I start saying it's to be expected. Yes, you guessed it - Annabelle has another UTI.

Annabelle was supposed to be casted/fitted for her first pair of AFO's today but we had to cancel because she was so sick. For those not in the SB world, an Ankle Foot Orthosis (AFO) is a short leg brace. Usually made of lightweight plastic that is worn inside the shoe. An AFO helps with better positioning of the feet and ankles.

I honestly have lost count what number UTI this is. I guess it really doesn't matter. She has had way too many. It just baffles me how quickly it happens and how sick she gets. The kids and I had a good morning swimming yesterday and she seemed fine for the most part. She was a bit extra sleepy and irritable in the later afternoon and evening but that's to be expected from a little who rarely naps all day. So honestly, I thought nothing of it.

When Branden and I went in to cath her at midnight we noticed that she had thrown up in her bed and that she had a fever. As I was cathing her and Branden was changing her crib sheets she started vomiting (big) all over her face. It was so scary because she was lying down on her back and I was so afraid she was going to choke. She was up until about 4 am throwing up and dry heaving. Thank goodness for Branden - he is amazing in these situations - me, not so much. Especially when I am so tired. He held her upright in the bed for hours and then laid her down in the pack in play that is still in our room. It's funny how I have been asking him to put this in the garage for at least a month since she sleeps in her own room now but it just never happened. Now I am very thankful it wasn't put away so she had a place close to us to sleep.

When she woke she was very lethargic and still had a fever. This lasted throughout the morning so I knew I needed to call the Dr. Thankfully they got us in at 2:30 and they decided to give her a shot of antibiotics because she was so out of it and wasn't keeping anything down. She has to go back in tomorrow for a follow up and possibly another shot. We didn't see much change in her behavior tonight but are hoping she will start feeling better soon.

Although, I am excited she is going to get her AFO's to help her start learning to stand I have to admit I have had some serious anxiety about it over the last few weeks. This is real and it's a big step for me. I'm not sure I am ready to answer people's questions i.e - "what's wrong with her" (I can't stand this one!) or watch their eyes stare at her precious little legs. I know it's natural for people to wonder and be curious and I understand that, but it doesn't make it any easier for me as her mom who wants to protect her from all the hurts in the world. This world that judges us so much on our outside appearances. Please know when I say "people" I am referring to strangers not the people I see all the time that love us and know Annabelle's history. PLEASE don't feel put off or like you can't ask me questions, etc. because that is NOT at all what I am saying. I'm talking about the people in the grocery store, that 10 year old kid at the park or that "one" mom who can't stop sharing all the amazing things her child is doing while not realizing I would love it if Annabelle did half those things. It's those people I don't feel like explaining anything to - at least right now. I know this will change, it always does. As soon as I get more and more comfortable with something you know I start to open up more and then you won't be able to shut me up.

So now I have to reschedule that appointment to get her fitted but are hopeful to make it happen soon. Annabelle really is doing awesome now that she have PT twice a week. Both her therapist and I really have seen some great improvements over the last two weeks and I can't wait to see how her legs continue to strengthen once she has those braces on.

Since we all know the best part of a blog is the pictures - here you go! These were taken during her PT session on Monday, August 9th. What a ham she is. I don't even have to say cheese or smile - she just smiles when the camera comes out of the bag. I LOVE HER!!

Did you notice that Emi isn't holding her in these pictures? She is getting SO strong!

To Liz, Shelly Lynn and Anonymous

2010-08-14T13:47:00.000-07:00

It's always so exciting (to me anyway) to get a comment on my blog. It's nice to know that others actually read it and are willing to take the time to comment. Thank you to those that do :-) No pressure or guilt to those that don't.

Sometimes I get comments from people and I'd like to thank them or respond back but I am not always able to because I don't now their e-mail address, they don't have a blog or they don't leave a name. Then I'm left wondering if I will ever connect again.

So, this is my best attempt at contacting a few of those people :-)

Liz - thanks for your recent comment. How is your little guy doing? I don't see your blog anymore and just was hoping that all is going well for you guys.

Shelly Lynn - Thank you for considering making a pillow case for the kids at the hospital. Do you live local?

Anonymous - thank you for your very nice comments. You sad that you found me by googling Dr. Javaheri? I love that you saw Ben's picture at the museum. I'm guessing you live local? How old is your daughter? I'd love to connect sometime. Thank you again for the beautiful God will make a way poem video.

Well, I hope you guys see this and are able to respond. Feel free to comment again or e-mail me directly at: summersfamily09@gmail.com

Kicking, clapping, hooray!

2010-08-13T00:47:00.000-07:00

Please disregard my super annoying voice.

Annabelle's legs are getting so strong and she kicks and kicks and all the time - we love it. For those that remember, this is the little girl that did not move her legs at all in the hospital after she was born. It is very exciting to see how her body is changing and developing and how all her hard work at physical therapy is paying off.

YAY FOR ANNABELLE!!

Tu Tu Cute! and the NYC Marathon

2010-08-11T00:01:00.000-07:00

Annabelle received this package in the mail all the way from Buffalo, New York! Everyone was eager to see what was inside.

It was a birthday gift from her very first friend, Emily and her family. Emily has Spina Bifida, like Annabelle, and her mommy and I became friends right before Emily was born. Emily is 2 months older than Annabelle and just as cute as can be! I'd link you to her blog but they have gone private. I am SO thankful it wasn't private last year because that is how we connected.

Check out this adorable tutu! You know my girlie girl loved it.

She was dancing!

She also got the book "Where Is Baby's Birthday Cake" by Karen Katz

Thank you Keicher Family for your thoughtfulness and for helping to make Annabelle's birthday special! I truly hope our girls get the opportunity to meet one day and to build a supportive friendship like you and I have.

Okay, so I just stole this adorable picture of Emily off their blog (sorry Liz) so you could see how adorable Emily is but also to let you know that this is the face that is motivating her mother to run in the upcoming NYC Marathon in November. 26.2 miles - all in support of the Spina Bifida Association!

If you are able PLEASE help them Conquer Spina Bifida by making a donation to the Spina Bifida Association in Honor of Emily Keicher.

To donate online please visit this page and select "Send a Tribute Gift", and follow the steps to donate!! Please note, you MUST select "In Honor" and put in "EMILY KEICHER" for the donation to be counted towards our team. And by sending an acknowledgment to "Elizabeth Keicher" at elizabeth_webb1976@yahoo.com, I will receive an email blast that you donated.

Click HERE to read more specifics on other options on how to make a donation to the very worthy cause.

26.2 Miles

5 Boroughs

1 Very Special Kid

On Sunday, November 7^th, Elizabeth Keicher will embark on a 26.2 marathon to honor her daughter, Emily, by running the NYC marathon.

Emily was born June 1, 2009 with Spina Bifida, detected while Chris and Liz were 18 weeks pregnant. Spina Bifida is the most frequently occurring permanently disabling birth defect in this country. More children have Spina Bifida than have muscular dystrophy and cystic fibrosis combined. Every day, about eight babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine. Those numbers are staggering.

SBA is the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those who are touched by this challenging birth defect.

Please help make this a memorable run and support an organization that will support our family for a lifetime.

Another beautiful beach day

2010-08-06T22:23:00.000-07:00

Since we are planning another beach day tomorrow I figured I better post the pictures from our last beach day :-) These pictures are from July 17th and it was a great day! Annabelle loved being in the sand and it was great to see her sitting up on her own so well. Our baby girl is AWESOME!!

I asked Jack to make sure she didn't fall over. It was so precious the way he sat next to her and made sure she was ok. Having a big brother seems so awesome!

She was so happy all day!

Project Eli - Have you heard of it?

2010-08-04T18:53:00.000-07:00

I just stumbled upon this tonight and thought it was to wonderful not to share.

Project Eli is a video documentary that will be distributed to ob/gyns, pregnancy crisis centers, hospitals, and other organizations throughout the state of Arkansas to help give families, who are expecting a child with Spina Bifida, hope, encouragement and advice from other families who have been in their shoes.

For the past three years, Julie Mayberry, the producer of the video and the mother of a child with Spina Bifida, has been interviewing families of children with Spina Bifida and capturing family moments.

There are a lot of questions that come with the pre-natal diagnosis. This video is not meant to be a substitute to medical information, but is a compliment to the information the family will receive from their team of medical professionals.

This video presentation is made possible through the generosity of those who loved Eli McGinley. He only lived five days but made a huge impact on the world around him. This event will celebrate his birth and honor the legacy he left behind.

To learn more about Project Eli click HERE

Click HERE to link to the McGinley Family blog

So many of us have commented that if only parents who received a Spina Bifida diagnosis could just meet our children their pregnancy would be so much less scary. I am so glad someone is finally doing something about it. Too bad it's only for Arkansas. Any film makers out there want to do one with California Families?

WHAT????

2010-08-02T15:49:00.000-07:00

You know I look cool!

Even with the messy hair

July 25th!

Race cars with her big brothers

2010-08-02T14:54:00.000-07:00

July 20th

Saying good bye is always hard

2010-08-01T08:58:00.000-07:00

On Monday, July 19th (before all the latest UTI and Ditropan drama) Annabelle had her last PT session with her private therapist Stacie. Annabelle has been seeing Stacie since she was just a few months old to work specifically on her neck and shoulders. Since that "issue" has since been resolved we are unable to continue seeing her through our private insurance - boo!

We love Stacie and are so grateful for all of her hard work with Annabelle these past 9 months. As you can see they created a special bond.

Here is a picture from one of Annabelle's first few sessions with Staice. Wow - what a difference. There is no question that many of Annabelle's accomplishments have come from having such a dedicated and loving therapist.

THANK YOU STACIE! WE WILL MISS YOU!

Moving in the right direction now

2010-07-31T08:16:00.000-07:00

Ok, so I guess I need to make a public confession about Ditropan and this blog is as about as public as I get :-) It looks as if the Ditropan may not have been the cause of Annabelle's extreme high temperature . Yes, the high dose (2ml 3x a day) we were originally prescribed definitely caused some scary side effects and an "overheated" body temperature but as we now know the Ditropan was not completely to blame.

When Annabelle (finally) woke yesterday morning (the day of the birthday redo!) she was groggy, puffy eyed, super hot (although dressed only in her diaper) and just plain old not feeling well. Since the Ditropan had been out of her system now for about 20 hours we were pretty confident her behavior was now due to something else. Of course when you have a child with SB & hydrocephalus you immediately think it's the shunt or possibly a UTI. Unfortunately, she continued to not feel well and seemed to be getting worse. Her temp was rising, she wouldn't eat any solid foods and she vomited up her antibiotics again - ugh! All the while her fontanel was fluctuating between full to hard - it was never really emptying in my opinion. We are so blessed to be able to communicate so well with both Annabelle's Pediatrician and Neurosurgeon. After several rounds of calls and updates, the decision was to bring her into the ER yet again to get completely checked out.

We were given another "fast pass" at the ER because Dr. Javahery (Neurosurgeon) had called ahead for us - I love that man! All signs pointed to a shunt malfunction as her head was super bulgy when we arrived but her temp had also rose to over 103 again. Thankfully, they gave her a Tylenol suppository immediately and that helped quickly to get her temperature down. After a series of tests - same ones we did last Thursday, it was determined that the shunt appears to be working but that she has a pretty bad UTI. Her white blood cell count last week was 25 and this week it was over 700 so it really skyrocketed this week. Because this as become a chronic issue the doctors all discussed the best plan of action for Annabelle.

So, once again her is the NEW plan :-)

She received a shot of antibiotics at the hospital
She is going to go to the pediatrician this morning and get another shot of antibiotics
She was sent home with an RX for a 10 days of an oral antibiotic

We restarted Ditropan yesterday before we left the ER. The new dose is 1.4 2 x per day and the pediatrician will be working with the Urologist and the clinic team to come in an agreement on the lower dose.

We are still cathing her 4 x per day and I'm happy to report that I had success the 2 times I did it yesterday.

I feel so much better knowing that she will so be feeling better soon. So, needless to say, birthday attempt # 2 didn't happen yesterday but the good thing is Annabelle doesn't have a calendar so she has no idea this was her birthday week. Everything is ready and waiting for her once she is ready to celebrate!

I am CONFIDENT that these boring text/no picture updates are a thing of the past. I am SO ready for some cuteness.

Done with Ditropan - for now at least

2010-07-30T08:37:00.000-07:00

Just a super quick update.

Annabelle and Ditropan do NOT mix. She has had 3 of the worst days of her life on that stuff. It even ruined her birthday yesterday :-( Her body temp has been ranging around 103 and will come down to about 101 with a cool bath. She's been lethargic and plain old miserable.

Look how miserable our sweet girl was yesterday. I wanted to take a picture of her on her actual birthday and sadly this is all I got. She could barely keep her eyes open.

Thankfully, we got the go ahead from the pediatrician (who btw was not the prescriber of this crazy medicine) to not give the last dose of the evening and she said she would be contacting the Urologist for us to work this out (yeah!)

So, thanks to this Annabelle (and Branden and I) got our first night's sleep since Monday! I will update later what the actual plan will be since I know that Ditropan is currently the only drug on the market for her bladder condition but for now we are going to pretend that today is her birthday :-) We are hoping the medicine is out of her system enough for her to enjoy the day - maybe open a few presents and taste some frosting.

Thanks friends for checking in on us!

Nicole

PS - Cathing is still rough. I was unable to do the morning one after MANY tries but grandma came to the rescue and was able to get it done. I was finally able to do the afternoon one by myself - YEAH!! Slow and steady progress :-)

Happy Birthday Annabelle

2010-07-29T00:38:00.000-07:00

One year ago today, July 29th, 2009 at 2:10 am, you, our sweet baby girl, Annabelle Grace Flower entered the world, weighing only 4 lbs 9.5 oz and 16 inches long.

Look at you now!

From SB Blog Families Get together

You are an inspiration to all!

HAPPY BIRTHDAY BABY GIRL -
WE LOVE YOU

More cathing & Ditropan updates

2010-07-28T22:51:00.000-07:00

So the 4 pm cathing was tough! The boys were better, I was not. They actually played tick-tac-toe and worked in the "workbooks" at the kitchen table while I tried to do it. Unfortunately, I just couldn't get it. After wasting 4 caths I just gave up and knew Branden would be home soon. We haven't gotten our first bill yet so I'm not even sure home much I am spending each time I open one :-o and I was told that my order will be for 1 month - nothing more - yikes! guess I better get this down a bit better.

Thankfully, Branden was able to do it when he got home from work. It's amazing how much is in there. Branden could see the kind f day I had and how miserably tired Annabelle was so he ended up taking the boys to music in the park on his own. The boys were super happy and Annabelle got a quite house to rest in. She and I laid down and woke about 15 minutes before they got home - who knew I was so tired too?

She was able to keep down her dinner and seems not so loopy on the lower dose of Ditropan. She is still very hot and wakeful - yes, she is still awake right now but am hoping she will settle down soon. The drama of today is over and tomorrow is our baby girl's birthday! There will be nothing but happiness tomorrow - it's the rule - you must be happy on your / your sister's / your daughter's birthday!!! I can't wait to snuggle her tomorrow.

THANK YOU EVERYONE WHO HAS BEEN ON THIS JOURNEY WITH US!

So many of you have been here from diagnosis to her birth to now her 1st birthday - what a blessing you are. To the wonderful new friends we have made who support me each day with your stories and words of encouragement - thank you! Annabelle even received two birthday presents from friends at the park tonight - thank you Shaw & Aranda Families. I can't wait to have her open them in the morning.

Ok, I need to get some sleep.

The "plan" revisited and slightly revised

2010-07-28T13:14:00.000-07:00

It's only day 2 but I'm worried. Everything isn't going as smoothly as I had hoped. Annabelle is on 2 new medicines - Ditropan to relax the bladder and Septra to help fight infections plus she is still taking Zantac for her acid reflux.

Honestly, Ditopan is just a yucky medicine that no one wants their child on. The side effects are huge and Annabelle has exhibited many of them within the first 24 hours. She is flushed in the face, her body is over heating, she can't sleep. She was up until after 11pm last night and back up again at 3 am. This was after being awake ALL day. She was acting completely loopy last night as if she was all drugged up. It just really sucked and was very sad to watch. They have agreed to decrease her dosage from 2 cc to 1.4 cc three times per day

Today she has been a bit better, but not really for the best reasons. She has thrown up 3 times - at breakfast, during the so-called 30 minute morning nap and then during lunch. Branden thinks it's because she her nose is stuffy and she is gagging on her food or the foul taste of the medicine. I'm not sure if it's because all the medicines are making her belly feel sick - either way it's not good. It's disappointing because she is loosing the medicine and the little bit of food she ate.

Catheter training went well yesterday. My mom, Branden and I all attended and the nurse was very thorough and generous with us. However, doing something with the help of a nurse is always easier than doing it on my own. Branden cathed her last night and this morning and he did well - no real issues. I on the other hand found it a bit more difficult today at noon. I felt like I needed to stay home because she was due to cath at 11:45 but for any of you that know my boys you know that staying home doesn't always work. They whine and fight and make each other miserable. By noon I was pretty much over it and of course stressed out because Annabelle had already thrown up 3 times and it was getting very close to cathing time.

When I was ready to do my first cathing on my own I asked the boys to please stop running around the house like maniacs. Of course they wouldn't so I put them in the back yard to play - seems nice enough, right? Well, not to them. Within minutes they started fighting and because I had closed (not locked) the sliding glass door they assumed I had locked it. So, as I am trying to focus and hold her legs and private areas apart with one hand and hold this very tiny and slippery catheter with the other hand all while keeping everything as clean as possible the boys were pounding on the back door - good times!

I had a little trouble - girls have 2 holes which makes it a little confusing at times. I wasted two catheters and two diapers but I got it done. I know it will gt easier with practice and I will get that chance again in less than 2 hours.

I realize that some of you have and will say that I should let the boys watch TV to make my life easier when I'm cathing, honestly I don't agree. I really do not like TV and I don't like how my boys act when they watch it - they are zombies. Yes, it would technically make those moments easier because they wouldn't be loud or bothering me but it wouldn't make me feel any better as a parent. I believe that the children have the ability to learn to entertain themselves quietly 4 times a day without needing the TV as a babysitter. I use TV as a reward in the afternoon some days after we have played particularly hard, been super creative, or as time to relax if we will have a busy 2nd half of the day, etc. and I just can't in good conscience put it on to get them out of my hair during cathing time. That's just how I feel. Enough about my thoughts on TV.

Needless to say I have been a big ball of stress today, Annabelle is irritable & restless (fun side effects), she doesn't want me to put her down, the boys are feeding off of my stress and now are mad because I told them if they didn't nap I would not take them to music in the park tonight. Well, they have been messing around in their room for the last hour and not resting so I told them (in not so nice of a tone) - NO MUSIC IN THE PARK TONIGHT! So we have a lot of unhappy people over here today :-(

So, back to the plan:

They have decreased her Ditropan dosage and want me to play around with the times a bit to see if that helps with her ability to go to sleep at night.

I am going to attempt to spread her medicines out so that her belly feels better and she stops vomiting.

I am going to have confidence that I will get better and quicker at cathing

I will figure out a way to manage the boys high energy in a way that doesn't crush their spirit but still instills responsibility for their actions and respect for their sister

I am going to pray, a lot - "I can do all things through Christ who gives me strength." Philippians 4:13

Only 1 day until Annabelle's birthday!!!!

2010-07-28T00:31:00.000-07:00

One year ago today (July 28th, 2009) Branden and I rushed off to the hospital because I was having some major contractions. I was only 35 weeks pregnant and super scared. The doctors were able to hold of delivery for about 12 hours - until July 29th, as our sweet Annabelle Grace Flower was determined to enter the world.

I was just reflecting on this past year of Annabelle's life. I can not even believe that Annabelle is going to be ONE year old this Thursday. If anyone is interested click here for the play by play leading up to Annabelle's birth.

This year has been a year filled with so much love and beauty, friendship and support, tears and more joy than we could have ever imagined. We were so very scared heading off to LB Memorial that sunny July afternoon - if only we knew then how amazing our daughter would be, maybe we would have slept a little better leading up to the big day.

What truly blessed people we are to have 3 such AMAZING children.