Friday, March 13, 2009
We're back...
In the hospital again! Malachi had been throwing up all night last night so I got him appt. at his doc this am. She thought he was dehydrated and told me that she wanted him admitted overnight. So...we came to the hospital, got admitted and they started an IV right away. He was able to keep down 4oz of formula, so Im praying he is over the flu aspect. However, that doc. on the peds floor is VERY concerned about his eyes. They still move back and forth a lot and she is worried that he has little or no vision. So it looks like they are going to do an MRI tomorrow. We are waiting to talk to the nurologist today because there are a few vision tests that they can do to see. Please pray that this is a quick stay and the Malachi can rebound from the flu quickly. Also be praying for his eyes!! We love you all and thank you for all of your support each step of the way!
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3 comments:
Jax never had an MRI for his eyes. But because he had a brain injury, they couldn't tell by just looking in his eyes how much he can see. So they did a test were they attach a probe to the back of the head and then flash a light in their eyes to see if the brain is recieving signals. His brain is recieving signals but that doesn't mean he can see.
Does he have nastagmis? Thats when the eyes move back and forth. A lot of downs kids have that but they can still see. Does he smile at you or look at toys?
He can definitly see then if he smiles and reaches for toys. Has the eye doctor dialated his eyes and looked in them? Because normally they can look in their eyes and see what kind of glasses they need. Jax vision problem was from a brain injury, so there's no way to tell what his vision is. But he does not track or look at people. He does look at light though.
Have them check his thyroid!!!! A low thyroid can cause nystagmis (sp?). This is also what Christopher's seizures look like, but I would have thought they would have been disagnosed by now if it was seizures. Especially with all of the times he has been anesthetized. Your electrolytes being out of whack can also cause this, but kids w/DS have a higher incidence of hypothyroid than normal. Make sure to get the actual numbers of the thyroid panel. If his TSH is at all above 3.0, MAKE them treat it. Let them know that YOU know that "untreated hypothyroid causes developmental delay and he doesn't need any help on that front. Also, the American Association of Encdocrinology and Endocrinologists made reccommendations in 2000 to change the normal lab values for TSH levels to .3 - 3.0 Labs don't follow it to save money. The values in most labs are .5 - 5.0, meaning there are about 200,000 people out there each year who should be treated for thyroid, but aren't."
Say it exactly like that and it usually scares the begeebers out of the docs that they have an informed parent. Also, tell them NOT to make me come up there! LOL!
We will keep you all in our prayers. Hugs to all of you!
Steph & Christopher
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