You Are Not Going To Believe This!!!!

What a day!!! I have been smiling since about 5pm tonight because I am SO happy that someone finally is listening to me. Someone finally agrees with me. Someone thinks what I do. And this someone said it before I said what I thought! What you ask?

Well this morning the genetics fellow came in to talk to me. She took the full history of my health, my family, J and his family. Then we went onto A from pregnancy until now. She was very impressed about how much I knew about his NICU stay, what infections he had, the dates and just all of the issues in general. She then told me that she would be speaking to the genetics doctor and they would come back.

At noon daddy went in with A to have his ph probe placed. It was not fun at all but it will be coming out tomorrow afternoon and I cannot wait to see the results!!! The doctors are positive that they won’t see ANY reflux where I think different.

Anyhow the genetics doctor came in along with the fellow I spoke to and a resident. He was very caring and concerned from the minute he walked in. He told me that he had heard all about me and what a wonderful mother I was. Yep, I try to be I told him.

We then laid A on the bed and I took his clothes off. Within about thirty seconds of him looking at him he said “this kid doesn’t have cerebral palsy.” Hmmm wasn’t it not too long ago I was telling everyone how his CP just isn’t typical. How he just doesn’t present how he should. I was blown away. I then told him that the doctor that diagnosed him was the only one that would say CP. He said “of course…you have a former 24weeker that isn’t meeting milestones and you label them CP…it is the easiest thing for them to do.” WOW!!!!!!

He then told me that he thought of course that A had some effects from prematurity but said that with what he was seeing he didn’t think it had anything to do with it. OMG!!!! Have I not been saying for months and months that I am so tired of docs blaming everything on his prematurity?! His CP?! I thought I was going to burst into tears!!!!!

He also is very concerned about WHY A is deaf. He said that it isn’t normal to have a child come in after their first birthday and find out that they are profoundly deaf when in the past they had passed two hearing screens.

I told him that the day we came the docs asked me what I thought was wrong. I said reflux, airway and something no one has figured out yet. He looked at me and said “I think you are right mom. You are a great mother and I am so glad that you have fought how you have to try and get answers. I can’t promise you anything but we will do our best. A doesn’t have any features that make me think of where I can start but we will start somewhere. This must be so hard on you.” He then told me that they are going to involve metabolics as well to start with a workup on him.

I cannot even tell you how good this feels to hear what I heard today. To have someone tell me that they think something else is going on without me saying it first. I cannot wait until I see the complex care doctor tomorrow. Wonder what she will have to say?!??!?!?!??!?!?? Genetics was just coming because I bugged and bugged. She didn’t hesitate to tell us over and over that it would just be genetic counselling and that they probably would not end up doing anything more.

On the other side of it I am very scared. IF A ended up having something genetic that most likely means that the chance of J and I having another child is slim. I long for the day I can get pregnant again….have a big belly….enjoy every minute of being pregnant and then have a big fat term baby. This brings me to tears just knowing that maybe, just maybe I will never get to experience it.

Mothers know best…..that’s all I know. When are MOST docs going to learn this?


13 responses

  1. Sammie


    March 18, 2008 at 4:32 am

  2. Growing Your Baby

    I am so proud of you!!!You pushed and pushed and guess what? they listened!!My fingers are crossed for Mr. Ashton.He looks like such a big boy in his new pictures.His hair is getting so long.

    March 18, 2008 at 6:02 am

  3. Jacolyn

    Yeah!!! Good for you for sticking to our guns! When Grace was in the hospital the docs were in a big hurry to insert a G tube and I keep resisting and she did fine. You are a wonderful mom!!!

    March 18, 2008 at 11:52 am

  4. Melissa

    Oh, Shannon! I am so proud of you for insisting on getting what Ashton needs. As always, mama knows best! I hope this is the beginning of wonderful news and solutions for you and for Ashton! Yeah!

    March 18, 2008 at 12:01 pm

  5. Melissa

    Fabulous news!!! Hopefully now you get some answers at least.(((hugs)))Melissaps. probably coming down tomorrow night(Wednesday). Just waiting to here back from my sister.

    March 18, 2008 at 12:37 pm

  6. Mel

    Wow, I can’t even imagine how you must be feeling now with this new information! I’m glad that you are finally getting somewhere, getting the acknowledgement and respect that you deserve and hopefully some answers soon. Good job!

    March 18, 2008 at 2:45 pm

  7. The Hull Munchkins

    Wow, what a great day! Finally someone is listening to you and actually looking at Ashton!!!I hope these people stick with you until you have the answers you were admitted for.So excited to read good news today.-Patty

    March 18, 2008 at 3:48 pm

  8. Maryam's Mommy

    SWEET!!!!! That’s Fantastic news! Keep up the GREAT work.

    March 18, 2008 at 4:14 pm

  9. baby james

    Here here. Good Job Mom and congrats on a JOB well done. I knew it, I always listened to you, us mom’s do know best. Tracy

    March 18, 2008 at 6:11 pm

  10. abby

    I’m so hoping that you guys finally get some answers and that whatever you find out helps Ashton. You are such a good mom, Shannon, for pushing and pushing for this.

    March 18, 2008 at 9:38 pm

  11. Justinich Family

    Wow, shannon. I feel like someone is finally going get this figured out, I can totally understand your feelings. Evan has a brain malformation but all of his genetic testing has come back normal and I have friends who have kids who are way delayed and have perfect MRI’s and no reason as to why this is happening to their kids. I hope you find answers. Glad that someone is finally on board.

    March 18, 2008 at 11:39 pm

  12. ladydianne

    Hi Shannon and AshtonHow are you today? What a good lady you are all around! Now I hope that all of the Doctors listen to your gut feelings. I love the picture your mom made for my 22nd birthday. There are lots of pictures of you guys! Your mom took a picture today of me holding the picture on my lap.Mom got new tires of my first manual wheelchair. I hope you get it soon so you can take pictures of Ashton in it. I would like a picture for my room. How are the Doctors treating you today? Dianne and I will do physio soon and I will try not to laugh too hard!! My Aunt Marg bought strawberries today for us to eat. Your mom didn’t want me to eat to many or……ha ha ha!Happy Easter, hope the bunny hops to find you at the hospital.Talk toyou soon,love Sean

    March 19, 2008 at 5:10 pm

  13. 23wktwinsmommy

    Shannon you’re so strong and a great Mom. Ashton is as lucky to have you as a mom as you are to have him as a son!!!

    March 20, 2008 at 2:11 am

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