Ok, said I was going to update everyone today on what we have found out so far - so here I am and here's what we know.
Maia had all that labwork last week. The only thing out of the normal range was her hemoglobin - she's anemic. The pediatrician believes it is due to iron deficiency and wants to start Maia on an iron supplement. While I don't disagree with that, the poor kid already has problems with constipation. Add iron and she will be really be backed up.
We saw the neurologist yesterday. On Monday, Maia had an EEG (electroencephalogram) to look at brain waves. This did show that she has a predisposition to seizures so the doctor recommends continuing her on the Depakane (anti-seizure medication). He examined Maia checking neurological function and is pleased with her current status. He feels that with physical, occupational, and speech therapy - she will do well. The doctor said that he believes her shunt is working appropriately, but has ordered x-rays of her head and abdomen just to verify this. Maia will also have an MRI of the brain and spine - the purpose of this is to have baseline information in case there are any concerns in the future.
We also saw the cardiologist who ordered an electrocardiogram, echocardiogram, and chest x-ray. These tests were all normal and showed no evidence of any heart problems. The cardiologist said that no further testing or monitoring is necessary unless Maia would develop symptoms in the future which is great news!
Tomorrow is Maia's eye appointment. We are hopeful that her strabismus will be correctable with interventions. We know that her vision is quite good, but right now each eye functions independently of the other.
Next week, we will meet with the neurosurgeon as well as physical/occupational/speech therapy, Urology, and staff at the Spina Bifida specialty clinic. Her hearing evaluation is the following week.
Spent the morning trying to work on the constipation issue. I know that this is contributing to some of her lethargy and poor intake. I'm looking forward to hearing what suggestions/recommendations we receive the from Spina Bifida clinic.
This afternoon, we ran a few errands. Took Maia to the mall - there is a play area and I thought she might enjoy being around other kids. She was actually very shy. She really wasn't interested in playing much, but I will take her again soon to increase her comfort level.
Tasha came over for a few hours to spend some time with Maia. I think they may be quite the pair! Maia loves Tasha.
All in all, Maia was pooped out today - well, not literally because then I would have been excitied, but she was tired by dinner time. Sure her brain must be on overload with all of the changes that have occurred in her world over the past 2 1/2 weeks! Anyway, she's still not eating - although she is manageing fluid intake all right. Please pray for her!
I've had a few things on my mind to blog about lately, just need to make the time for them. Perhaps I can do so tomorrow.
Oh my goodness, you must be super mom to accomplish all that in 2 weeks after dealing with jet lag in that time too.
ReplyDeleteSOunds like things look pretty good though :)
Sounds like great news! She is such a cutie...
ReplyDeleteI have epilepsy, too, though I don't take Depakane. With my medication, however, what I have done is check online to see what possible side effects there may be. Some may be nutritional and supplements may be good.
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