Thursday, March 3, 2011

New shoes...

Do you see this!!! I am so glad we finally got her AFO's, so excited she can stand all by her self such an exciting moment and I just can't wait for more.

Wow the last three weeks has seem like a total blur and have been feeling like I have been running on auto pilot. Anyways Emma was suppose to get her MRI yesterday but didnt happen due to scheduling and so it's going to be Monday morning. Feeling a little anxious but overall I am confident that she is doing good and what happened the other week was just a fluke, well that's what we hope for : )

Now I didn't really tell anybody about this so I am feeling like I need to just get it off my chest. About three weeks ago, around the time the results of the MOM's study had came known to the public the Perinatologist that I was seeing during my pregnancy had contact me because they wanted me to write an article and do something for our local news about being in the MOM's study and how Emma is doing now. Well with all the chaos going on I had forgotten about it completely and the lady had gotten back to me this week. She said that they found another Mom who had also participated in the study and was selected for prenatal surgery but she wanted me to write a small article about Emma and our experience with the study and something about there office. Now from the very begining I was extremely hesitant about it because this office had the doctor who told me Emma will be in a wheel chair, she will not walk and she will be mentally handicapped. Now of course I know that these are all possibilities "BUT" she did not say that there could be a possibility she will not. It was just a matter of fact! And urged me to abort her and probably asked me numerous times.

Anyways I talked to my family about it and of course Nick and it was my chance to let other people that will be in the same situation the we where in, that there is hope and these kids are so special. So I told her I would do it and I submitted her the article and this what I wrote

Unfortunately the problem with Spina bifida is not very many people have any idea what it is, and if they have heard of it most people have horrible pictures painted in there mind of maybe a not so good quality of life, but I have to say that is really not the case. There is “Hope” and these kids live great lives and will bless your life in more ways then you could ever imagine, and I truly believe that goes for all children with special needs.
The first Doctor to give us a diagnoses wasn’t positive at all and gave us the story of she will “NEVER” walk she will “NOT” have any feeling below her hips and quite possibly she will be mentally handicapped. This information made my Husband and I search for better answers then this and we decided to get into contact with the MOM’s study and they helped us understand this disease . We also saw Dr. Ponky , she was a wonderful doctor who truly cared about both myself and my daughter and keep me thinking positive. We also got in contact with other parents with children with Spina bifida and realized that no case is black and white and there are so many different scenarios.
Despite everything we where told that day our daughter is doing fantastic , and she has proven every doctor wrong from the first day she was born. We did participate in the study and randomized for post-natal. She is the happiest baby and fills our house with sunshine and proof that if there is a will there is a way. She just turned one and just started standing and pulling up on furniture and she also talks and say’s Mama, Dada, Dog, Emma (which is her name), and Hi. We couldn’t be more proud of her and the things she has already accomplished and I can’t wait for what’s to come.

So I emailed it to her and said let me know if there's something I need to change or if its too long. When she replied back she said she made some changes and this is what she wanted it changed to.

When our daughter was diagnosed with Spina Bifida in utero, we were given a grave prognosis in which we were told she may never walk or have feeling below her hips and could quite possibly be mentally handicapped. The Fetal and Women’s Center helped us so much by giving us all of the information on the diagnosis and options, and then respected our informed decision to keep the pregnancy, they made an appointment with a pediatric neurosurgeon for us, and educated us about the MOMs trial that was going on. We were seen by Dr. Ponkey at the Fetal and Women’s Center, who is a wonderful doctor and really cares about her patients and she kept us thinking positively. The MOMs trial was randomized, and we were selected to have post natal surgery. We also got in contact with other parents with children with Spina bifida and realized that no case is “black and white” and there are so many different outcomes.
Despite everything we were told, our daughter is doing fantastic! She is the happiest baby and she fills our house with sunshine and proof that “where there is a will there is a way”. She just turned one and she is already started to stand and pull up on furniture. She has also started talking and says “Mama, Dada, Dog, Emma” (which is her name), and “Hi”. We couldn’t be more proud of her and the things she has already accomplished and I can’t wait for what’s to come. We just want to thank the Fetal and Women’s Center for all of their support and expertise in helping to make a positive difference in people’s lives.

I was really upset because it was clear there soul purpose was to benefit them not for me to give hope but to sell other people to come to there office. I thought about this for a day before I got back to this women because I just don't know where to go. After much thinking it weighted so heavy on my heart I couldn't agree to it because of that doctor. This women was so sweet and completely understood.
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  1. I love those pictures!
    I completely agree with you about what you wrote. She asks you to write something and then changes it? I would have been so upset, especially since you thought so hard about doing it in the first place.
    Her edited version really missed the boat on what you were trying to say. She didn't just add a word or two, she changed almost the whole thing! And of course put a spin on it!
    I'd see if you could send your actual letter in to the editorial to the local paper.

  2. Yay for AFO's! She's doing amazing and so are you!

    You did the right thing, Am. I know that decision was difficult for you. Way to stand by your convictions!

  3. Wow, she completely changed what you wrote! May as well have written it themselves and just stuck your name to it. I agree with Amanda - send in your version to your local paper!

    I think those are possibly the cutest little AFO's I have ever seen. She is such a little rockstar. :)

  4. Emma is so cute! I LOVE her AFOs! I wish the boys AFOs were as cute as the girls! Emma reminds me of my little Grayson who was born in August. It is so awesome that she is doing so well! May I ask what her lesion level is?

    Melisa :)

  5. Melisa thanks for the comment! Girls seemed to have it easier when it comes to the clothes and shoe department just always seems to me there is more cute stuff out there then boys : ) Her lesion level is L3