Good news, bad news

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As you know, Matthew has had several doctor's appointments this week, and so far we have some good news and some not so good news.

First the good news...all of his labwork that was drawn on Monday came back normal!!!! YIPPEEE!!! His direct bilirubin is at an all time low of .5, okay so it is suppose to be .4 or lower but we'll take it!! All of his chemistry came back normal, his hematocrit and red blood cell count went back up (which means, no blood transfusion needed) soooooooo, we were able to stop three more meds today!!! I am soooooo excited, happy dance, happy dance!!

In addition to all this great stuff, Matthew was weighed at the Pediatrician's office today and he is exactly 9 pounds!!! woohoo for the little boy's weight gain!

Now, the not so good news. Matthew met with the eye doctor yesterday and he wants to try to do the surgery this Friday, although I am not so sure that it's going to happen. The doctor wants Matthew to have an MRI done before the surgery. Matthew has developed rapid up and down eye movement called Downward Nystagmus. It is involuntary and apparently has nothing to do with all of his eye problems; it has to do with some neurological problem in the brain. The doctor wants the MRI done to make sure nothing else is going on because this neurological problem could be the reason why he had the vagal response during the last surgery. The surgery won't happen unless the MRI has been done and they seem to be having some difficulty getting him in ASAP. In addition to all this, in order for Matthew to have the MRI done, he has to be put under anesthesia so he is completely still for the MRI and when he goes under anesthesia, that can lead to more complications with his lungs. For those of you unfamiliar with Nystagmus, it is characterized by an involuntary movement of the eyes, which may reduce vision or be associated with other, more serious, conditions that limit vision. Nystagmus may be one of several infantile types or may be acquired later in life. For more easy reading information about Nystagmus, click here

So, as you can see, this is not the news I expected to hear and it just really puts things into perspecive for us. We are really not out of the woods with Matthew even though he is home with us. We really won't know the extent of his complications or developmental problems until he is 8 years old! Yes, that's right, 8 YEARS OLD!! Who knows what kind of developmental problems he may have, especially with the bleeds he has already had in the brain from way back when.

They say there is no cure for Nystagmus but there are things that can be done to reduce it. I have seen God work a miracle before, and I can only pray for another one here. Please continue to pray for Matthew's development to be normal, for healing of his eyes, and of course for us as we go through more stuff with him.


Just think how far you have come. Wonderful! We "happy dance" with you on the accomplishments and continue our prayers for you all with the challenges. We hope you all have a wonderful Christmas!


Karen and Neal

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This page contains a single entry by Jenn published on December 17, 2003 2:41 PM.

Getting bigger and better... was the previous entry in this blog.

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