Waiting...patiently

We love his little curls on the sides of his head. We think they are so cute! He is growing up so fast.

Today Oliver had less seizures than the past few days (about 1/2 as many). We are really thankful!

Andrew talked to the neurologist tonight and he said a few things that were helpful but, basically they boil down to...wait I really wish I was a more patient person- it is hard to wait and see when it is your baby :) Here is the scoop:

1- We will increase (doubling it) Oliver's current med on Sunday

2- In a week or so we should be able to truly tell if the current med is working because the dose should be at the right level and his body will have time to adjust. Hopefully this med will work and not cause toxicity like the old medication.

3- There are 10-12 seizure meds available so, if this doesn't work there is still hope

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As I have combed the Internet for information and resources I found this amazing website www.seizuretracker.com. It is a free site for anyone wanting to track seizures/meds/etc. As you might have guessed, the record keeping for seizures and meds is really important especially as it relates to patterns and triggers. This tool creates graphs for you that show when the seizures happen, their frequency and how that relates to the meds. Interestingly enough the people who created the website are parents of a son with TSC. They got so frustrated with their record keeping that they decided to make a website to simplify the process. You can even post your videos of the seizures onto the site. It has really made my life easier-another thing to be grateful for in this unusual time.

I know I say it a lot but, THANK YOU! This week has been hard and we have been touched by your kindness. You have shown us the love of God in very tangible ways from emails, to calls, to hugs, to meals...that has eased our burden.

We are praying for patience as we wait. We look forward to Boston and hope to get our official test/meeting dates on Monday so we can make flight/hotel arrangements.