Special Needs
Update....
Update: Well we went to the neurosurgeon today. She showed me the cyst and I'm in total shock. Its covering half of the posterior part of his brain. She has said that he definitely doesn't act like he is neurologically well. That he bobbles way too much, and that he has hypotonia. That video I showed proves something is going on, she believes that our next step is genetict testing. That is developmental delayed in somethings and early intervention is also a definite for him. They can't take the cyst out, bc of where it is position. And as of right now, they won't drain it because it isn't compressing any veins or fluid blockage. We have to go back every 6 mths for a CT scan. She said a lot of children have some genetic issue that have this type of cyst. But that can't really colerate which it would be, since its really rare. That A LOT of these children end up special needs for the majority of their childhood or lifetime. I want to cry, I want to ball up in my bed and cry. But I can't cause I refuse to breakdown. It is killing me that my son is becoming a medical oddity and now I don't want to tell anyone- I don't want any one to treat him like he is different. But this doctor just showed me proof! That I have been right all along- that my mommy sense knew from the day he was brought home. Something wasn't right. Now I just got to figure out what- I don't care if I have to go to a different state or even country!sorry by the way- I'm on my bb. Its hard to see what I'm writing. But on another note...he turned 6 mths today
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Re: Update....
((HUGS))
I am sorry you are dealing with such harsh news. I can assure you that many of the mommies on here know exactly what you are going through. Many, including myself, will also tell you that the reality is sometimes so much better than the "worse case scenario" that you will get from the doctors.
If I were in your shoes I would consider a second opinion. Waiting to drain the cyst may be the prudent thing to do at this time, but I would want to make sure with a second opinion.
It's o.k to cry. Sometimes it is good to cry and get all the negatives out so all the positives can come in. I know you don't want to share and have people pity you or your son, but I think the benefit of having someone to lean on helps. Even if it is a therapist or religious mentor. Hugs again.
I agree with everything the pp stated.
My son has CP and while he was diagnosed just about 1yr ago, I felt the exact same way about not wanting to tell anyone. Shoot - I didn't even want to tell my DH because he was deployed and I wasn't sure how it would affect him. But in the end, I did tell only my immediate family as I needed the support and I needed a shoulder to cry on and to think outloud with.
If I remember correctly, the father of your son is not in the picture. Is he at least giving you child support? You should probably tell him what is going on and make sure you have his and his family's medical histories should you need them in the future (your son will anyway).
I am sorry you are dealing with such devastating news. It isn't easy to hear but after awhile you will start to accept it and things will, in a way, get easier. You'll just be an extra busy mom now!
No his father isnt involved at all. I have a protective order against him. He assaulted me when I was 15 weeks preg with K. All the doctors said if they need info about his dads side that they will contact him or someone in his family.