Monday, October 23, 2006

EEG/Neurological Evaluation

This Thursday Judah will have what I believe is his last EEG from the study he's participated in from birth. I think it'll be his 8th EEG. For the last seven EEG's, we've been able to celebrate and give thanks to God for a good report. We are, of course, praying and asking you to pray that this 8th EEG will again show that Judah's brain is functioning as it should, and that there are no signs of SWS involvement in his brain. There may be future EEG's as a way to continue to follow up with any possible new developments, but I'm hoping they won't be quite as frequent as the ones we've done for this study.

We will also be seeing Judah's neurologist who will give him a general evaluation as well. There are some matters to discuss with her, and I need God's wisdom to guide me. The first issue is that of his growth. Upon Judah's last routine pediatric visit, it was noted that he fell off his growth curve in both weight and height. This is of some concern as it has been observed that there are higher percentages of growth hormone deficiency among Sturge-Weber patients than there are in the general population.

The second thing I need to discuss with Dr. Comi, Judah's neuro., concerns an oral surgeon for Judah. Judah's dentist recently recommended that Judah have an initial consultation and be followed long term by an oral surgeon for the purpose of watching, and intervening if necessary, Judah's jaw bone growth and joints in that area. She referred us to someone specifically who happens to be right up the road: very convenient. However, upon discussing this with Judah's neurologist and asking for her input, she recommended an oral surgeon at Hopkins who the SWS team at Hopkins has great confidence in as well. He is apparently already following and treating at least one other SWS patient and has had much success with this child.

I am grateful that there is even this kind of care available for Judah, but am now faced with the decision of what/who is best. I have recently been made aware by the kindness of God through His Spirit that I have neglected to pray about many of the more recent decisions regarding Judah's health and dr. follow ups. I have simply filled every prescription written, made every appointment recommended for follow up, and acquired every referral deemed necessary by his doctors. This leaves me feeling like a hampster in an exercise ball, unnecessarily running like crazy without getting very far.

My intention is never to withhold the medical care needed for Judah's well being. I just want to be consulting the One who is Judah's Creator and Sustainer and find out from Him what doctor's appointments to make and keep, what prescriptions to fill and administer and what tests, procedures and new specialists to pursue.

Please pray that:
  • Judah will have grown sufficiently enough to not require further follow up on the growth issue and that there will be no growth hormone deficiency.
  • Judah will cooperate with the lengthy process of having the EEG electrodes placed all over his head and then fall asleep for the technician to get a good read from him.
  • Judah's EEG will show no signs of SWS involvement in his brain.
  • God will give us wisdom to know what oral surgeon to choose for Judah's care.
  • We will grow not only in consulting God first regarding Judah's care but also in confidence of what we hear from God and that He will provide all that we need for Judah to receive the best of care.

Thank you for your specific, persistent prayers on our behalf.


Zoanna said...

I'll pray about these things you've mentioned. It's always good to take a step back like you're doing to ask the Father first and then moving forward. But HIs grace has also been there for the times you have just gone with the flow. Does the oral surgeon up the street have SWS knowledge or experience? I think if it were me, I'd keep the specialists all at Hopkins since they are able to share notes and confer most readily, and you don't have to re-explain stuff to a nonHOpkins doc. But that's just my initial response. I'm sure the HOly Spirit will guide you to a decision you can rest in.

Zoanna said...

So, how did it go Thursday?