Well folks, I FINALLY got a hold of the lady who is supposed to be setting up Malachi's therapies. She informed me that he still hasnt been reffered for on-going services but he needs another evaluation and then he can go on the wait list for services. WHAT? Wait list?? Yep friends he will STILL have to wait. Why you are asking? She didnt give me a really good reason other than there are not enough providers. My blood was boiling by this point. My son has a medical diagnosis of down syndrome, he will be behind "normal" children the REST of his life. He does not need these service because I am worried that hes not rolling over. He needs them because most likely he will ALWAys be behind. Its so frustrating. I asked if there is any possibility that he can get moved up the list because he has down syndrome. They told me no, that the only children who get "priority" are children with Autism. I agree with that, but I also think children with other medically diagnosed conditions should be moved to the top of the list. So Im not sure what we are going to do. I contacted his case worker and she is supposed to be getting back to me tomorrow. I will NOT let him fall further behind. What do you all think? Has anyone else experienced this? Im going to start looking into our legal rights and that what the law says about this. I will not sit still and be okay with this. I wonder if there are other parents with children who have down syndrome who are on the wait list. Im going to fight for them and every other child who is in a situation similar to this one. Any ideas of where to start? I will keep you updated on this. Done worry kiddos, I am on it and I will get you what you need!!
Next order of business...TUBES! Malachi is getting tube in his ears tomorrow morning! I am so happy my baby will finally be able to hear!! We are confident that the fluid in his ears are the reason of his many (4) failed hearing tests! But we will find out more when we go back for our follow up and hearing tests. Pray for positive results and that Malachi will be able to hear fine!!
Tuesday this week Malachi is going in for an upper GI and small bowel study. The GI doc wants to make sure there are not ubstructions and that everything is "flowing" like normal! We love her. She also gave us a new perscription for Previsit (totally not spelled right) and she things they will help better for peewees reflux!! But wait, theres more...she ALSO told us about an over the counter pro-biotic that should help get rid of Malachi's runny poops!! I am praying this works, I am getting tired of exploding diapers and ruined clothes!!
And on friday we are having a nutritionist/feeding specialist come over to evaluate Malachi. I am wording what she is going to say!!
One more thing, Malachi is now 8 months old and 13lbs 11oz. I am soo praoud of that little guy!
Sunday, March 8, 2009
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All that stuff sounds so familiar. Jax is still on prevacid even after his nissen. He just got tubes in his ears and we finally got an accurate hearing test. Now we know he needs hearing aids.
While your investigating do things at home with him. Tummy time, and try to get him to roll to a favorite toy.
I understand the waiting part. If he is on state aid there is always a waiting list. It's not fun, but a fact. We, too, are on a waiting list for Curtis's services. It will always be a fight. Tubes will be a blessing. Our youngest had them and his hearing came right away. You will see a difference.
It was such a pleasure spending Sunday night with you guys... I'm still in awe of how great Malachi looks! Such a big healthy, happy little guy, he's so blessed to you and Josh as parents!
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