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!


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


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.


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!