Let's see... Where to begin...
We are now up to 7mL twice a day on the Keppra. The goal dose is 8mL twice a day. We stayed at 6mL in the morning and 7mL at night for a while. At 6mL twice a day, I was feeling confident about improving seizure activity, but when we increased his evening dose to 7mL, he started having more seizures, more clusters and getting more Klonopin. It wasn't as bad as a few months back with numbers over 100, but we had gotten down to between 15-25 sz most days and we were hopping up to 50's or more with clusters of 10-30. I finally increased his morning dose to 7mL also and after a few days, it seems the numbers are dropping again, thank God! He has been more sleepy and irritable, but we are hoping that his body will acclimate and that will subside.
We will be seeing his new neurologist in about a month. Dr. Rohrbaugh is one of the doctors in the same practice as Dr. Burris, who we love so much and will miss for sure. I am hopeful and confident that he will be great for Lucas and for us. He has the same philosophies as Dr. Burris and we are looking forward to getting to know him better. We will still follow up with Dr. R at Children's Hospital, but not as often. We will just keep her as a consulting doc.
In more personal matters, we have recently made some new friends. :) One of the many malformations of Lucas' fascinating brain is called polymicrogyria (PMG). It is the likely culprit behind his seizures. Thanks to social networking, we have met some other families in the St. Louis area with a child who also has PMG. We all met up at a park a few weeks ago. It was wonderful. I always thank God for those special times when I meet new people who feel immediately like dear old friends. I would (and likely will still for a while) forget some names and mix up who is married to who and whose kids those might be, but being together, meeting for the first time, was like we'd done it before a thousand times. All our kids are different and we all have other kids who are "normally developed", but it was like, even though our paths have not been the same, that we have been walking together all along. We are excitedly thankful that we now will be sharing our walks together. We live a bit all over, but we will be getting together many more times. :)
Lucas and Eliana have also both had birthdays. He is now the big 5 and she is 2. He is around the 30% for his weight, but the 86% for his height. We are super thankful for his thinness though. If he were a stocky boy, I'm sure he'd have at least 15 more pounds on him. :) We visited family in NY for his birthday and got to meet our newest family addition, Baby Darla. She was born just less than two weeks before Lucas' birthday and she's beautiful. Lucas and Eliana each spent a day sick on our short visit, so we didn't get as much time with her as we would have liked, but we are looking forward to seeing more of her in a few months. :)
Lucas also had his last day of preschool and will be starting kindergarten the 13th of August. I remain to be about equally thrilled and nervous. I'm sure he will be fine. Actually, I'm confident he will thrive, but I am going to miss him and I have a lot of things racing through my mind I want settled before I really trust him to be in someone else' care for so long. I'm sure I've mentioned before that this will be the longest separation aside from when Eliana was born. He'll be there 9-3:30. I'm sure I'll cry. His last day of preschool was filled with tears for me too. We are eternally thankful for his most amazing team in preschool. We will miss them a ton, Julie, Susan, Sue, Rekha, Linda, Laura and Laura.
We have a bunch of photos for your viewing pleasure. There are a few more on the camera. We'll get those to you eventually. We also still have videos, mostly of Eliana being adorable and often ridiculous. I know I keep saying that.
For now, it's time to get the kids ready to go to the dentist (yeah! fun!). I hope you all have a wonderful day and see the wonder and love of God all around you. :)
Until next time...
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| Spring in St. Louis |
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| NYC May 2012 |
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| June 2012 |
