Friday, March 6, 2009

what next??

Well I may or may not get swamped with comments on this one!!

I am still at a loss of thoughts or words...what do I think now??

Went to genetics....

Well I went to him and told him that I am seeking there anything genetic that is causing my Madie the way she is?? Can we run any tests? Do you think there is anything genetic that is causing her to be so physically delayed????Can you give me Answers?? I felt desperate..I had waited since DEC for this appointment!!
When he stated that since her last chromosome analysis came back normal that there is nothing genetic that could be making her the way she is...( we had her tested for Fragile X syndrome and she was not a carrier at all) that there is something in her brain that is not letting her do the things she needs to be doing...something that may have been damaged and is making her the way she is...
I begin thinking WHY did I come here??
The Doctor looked at me and in not so many words does not think madie will walk. ..
NOW he did not flat out say that but he seemed like he thought it was not possible...grim prognosis....Told me I need to make her life as comfortable as I can to help her live as independent as she can...
I feel myslef beginning to cry...I see all the things I wanted for madie being torn away I see wheelchair accessible mini vans and huge harnesses for her bath and ramps...and oh heart was racing I felt anxiety coming on...I see my dream trip to Disney being torn away. All I wanted was to see her run thru the park...
Seems so simple to an average family eh?
I wanted out. I wanted to get away from him...use a four letter word..grab madie and go.
Dont worry I did not do that..:) I mean HOW DARE HE tell me that madie will not someday DO IT! Tells me I need to focus on her cognitive development and not to worry so much about walking...
He examined her and checked her reflexes and her reaction to small balance putting arms out to catch herself when she falls over (which she does not) and bearing weight on her feet...etc was just like they do at the pediatrician wellness exams when they lift them by their arms etc...checking for this and that.
I dunno....I just dont know...
I wanted to curse the seizures and the seizure drugs and the doctors and the WORLD...I was so at a loss..feeling so helpless..
I wish there was a magic something for all our kids...but folks...I just have no clue.
Madie is down for her nap now and I just feel so drained...I am ready to relax tonight and then this weekend we are going to grandma and grampas beach cottage to hang out for an overnight -er...relax, have some good food and wine....sounds like a plan after this stinkin week!
Well if its not genetics than WHAT IS IT?? where to next?
Still workin on getting the feeding therapy underway... Still weighing 21 pounds 11 ounces..And Adaptive stroller has not come yet....hmm
Hug mamas.
Keep those prayers going...(I feeeel the vibe! lawdy lawdy!)Arise and walk my child!!!(lol)

1 comment:

Reagan Leigh said...

I'm so sorry! What a jerk! Don't listen to that doctor. He has NO idea what Madie's future holds! And he's also not telling you the whole truth about the issue of genetics. The thing is, Madie has tested negative for whatever tests he has run, but that does NOT exclude genetics as the cause of her problems. They test them for the most likely diseases/syndromes but they don't test them for everything...they don't even come close...they can't. There's not enough blood in her body to run every test on her. And there are so many deletions and mutations that have not yet been identified...there is no way he can say it's not genetic. Just like there is no way he can say she will never walk! Ugh. Makes me sick. He doesn't know what she has or how she'll progress, so he should just keep his mouth shut! Don't listen to him! Madie is GOING to Disney world!