December 29, 2011

Trying out some new stuff at PT - December 2011



































We've had a bit of a rough patch lately where Annabelle has been exerting her independence and not really wanting to do as much as we would like her to do in therapy.  Her therapist and I are working hard to come up with some fun new activities that will motivate her to do what we need her to do to continue to strengthen her.  When is is willing to walk/stretch, etc, she is doing super GREAT! 

I'm looking forward to what 2012 has in store for our sweet and sometimes super feisty girl! 

December 27, 2011

Showing off a bit

On Christmas Day at my Dad's house Annabelle was having a great time playing with her brothers and her cousins.  She was particularly enjoying her time with Mia, her "older" girl cousin.  At one point Annabelle began pushing herself up, almost to a standing position.  We have never seen her do this and were all very excited about her strength and self motivation to do this.  It was quite apparent that Annabelle was trying to keep up with and possibly impress her cousin with her abilities.  Whatever the reason, I liked what I saw! 





November 5, 2011

Super Girl!

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!























October 12, 2011

The awareness project - A letter to the Editor

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

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!

October 8, 2011

Helping to spread awareness

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.



October 2, 2011

Spina Bifida - what it is

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

October 1, 2011

AWARENESS

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!

August 21, 2011

Balancing Act

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.

August 15, 2011

The calm after the craziness

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!


July 31, 2011

Celebrating Annabelle!

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.

July 28, 2011

18 weeks to prepare

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!

July 24, 2011

tough love happening here

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.

July 20, 2011

Test results don't always provide answers

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



July 12, 2011

My Roller Coaster



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!

July 9, 2011

This girl


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!

July 4, 2011

Now we're cooking

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!