Wednesday, March 16, 2011

Rolling with the Punches..

Well I have re-written this post three times now and everytime I wasnt able to finish and when I re-read it over I have different feeling so here is my last attempt to my post that I meant to post over 2 week's ago!

So in reality not allot has happened, but at the time it really didn't feel that way. The other day Payton had saw a little girl who was probably a little younger then Emma and She was walking and crawling. Payton stared at her like he couldn't believe what he was seeing. He starts yelling to me "Mom", "Mom", look! That little baby is walking!! I said to him I know that's Awesome! He looks at me and say's but Mom Emma doesn't walk or crawl. It dawned on me that he has always just thought that it is just normal for her not to move around because he really isn't around other small babies Emma's age. So I said yep bud that's why the doctor ( he calls the Physical therapist doctor) comes every week to help her so she will be able to walk. You know it didn't make me sad because I have excepted that she will do everything in her own time. I have full confidence that some day she will get up and move.

Now I had forgotten to mention in my last post that MOM's study came to us for her evaluation since there was no way we where coming to them. It started off really great they did her physc eval and she did so well she even impressed me! The psychologist was impressed because she said usually they dont get through this much due to the kids wanting to stick everything in there mouths. She didn't try sticking anything in her mouth not even the cheerio's she was given to put into a cup. Now I was under the impression the she could take a nap when she started to get tired, the started at 8 am and her nap time is about 10am and when 10 rolled around she was tired and very cranky but they wanted to keep going and could clearly see she wasn't happy at all! It started to make this Mama not so happy as well.They wanted to start to do the physical part, which of course she wanted to do nothing! She wouldn't try rolling over, sit up , absolutely nothing and get this! They took it as she just can't do it. I explained she can do these things she is just very tired but I don't think they believed me. So then it came to see where she has feeling. Well I know she doesn't have any feeling in her left foot very minimal feeling if not any below her knee on the left but the right I know its spotty but pretty sure she has feeling in her foot but the doctor concluded that for both sides no feeling below the knees. I'll be honest this pissed me off because I really didn't believe that and I said that several times but decided that it doesn't matter makes absolutely any difference and I know her best! I was glad to see them leave and be done with it!

Her MRI we are still waiting for the other doctors office to send the MRI CD to the Dr's office so they can compare. STUPID and irritating but she has done fine nothing strange but it has been almost 3 weeks now.

Here is a picture of her in her new stander that a VERY awesome Mom gave us so I can stick her in it without any help and she is happy and glad to be standing. It has made my life so much

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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