December 6, 2012

olivia's appointments and EEG results

Last week was a busy and long week for sweet Olivia.  We had a doctor appointment every day and ended the week with an EEG.  Even though it was a long week for all of us, we got more information on Olivia's development, growth and brain activity.

We started the week with another check up with the NICU doctor.  Olivia is gaining weight but unfortunately she did fall to the 10th percentile (9 lbs 4oz) from the 25th a month ago.  I was incredibly discouraged at first but we have the ability to up her calories in each bottle so we are trying that and hoping for better weight gain this month.

The NICU doctor was impressed with her development so far.  We continue to be encouraged with what Olivia is doing physically and know that therapy is helping tremendously!
 
We also went to meet with the Developmental Pediatrician.  Basically this pediatrician will track with Olivia's growth and development for the next 25 years.  We were asked lots of questions, especially about Olivia's eating since that is the main concern of all the doctors we see.  The doctor gave us some great advice and new things to try.  We will see the developmental pediatrician every 3 months (or more often) as needed to help keep Olivia on track to meet developmental milestones for the next 2 years.

Friday was the big day that we have been anticipating since leaving the hospital two months ago.  This was Olivia's first EEG after discharge and we were all a little bit anxious about it.  Thankfully Jason went with us and I was SO thankful after the cry fest that happened while the tech was putting the probes on Olivia's head.  Olivia hates being restrained so this was pretty much torture for her.  Jason is so good with her in these type of situations and remains super calm.  I was on the verge of tears the entire time.
 
There were 24 probes glued all over Olivia's head.  Even though this looks pretty terrible, it doesn't hurt her at all.
 
The tech had to monitor her brain activity for an hour.  Thankfully she slept most of the time and really did look super peaceful.
 
Towards the end of the scan, she woke up and the tech did a strobe light test.  Olivia HATED it!  But thankfully that didn't seem to induce any seizure-like activity that we could see.

During the test, the tech couldn't say really anything about what he was seeing.  He did say that he would go get the neurologist if there seemed to be any severe/crazy activity and he didn't have to do that so we were pretty encouraged.  However, we spoke with the neurologist's nurse this week after the results came back from Little Rock and there is still abnormal brain activity.  It has improved since her last scan so that is encouraging but I'll be honest that I am a little bummed by the results.  We were hoping to be able to stop the seizure medicine but that won't happen as long as there is abnormal brain activity.  We go back to the neurologist in January and hopefully will get more information about what is next for Olivia and her brain.

We know that God is in control and He is the Ultimate Healer.  We are trusting in His timing for complete healing of Olivia's brain.  And if He chooses to heal just a little at a time, we wil choose to rejoice in that and praise Him for each little touch of healing we see.

We've had another long week around here but I'll save that for another post. :)

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