Good News!

Playing in Boston Gardens 

Oliver was fascinated by the construction going on at the condo next door

Full Boston Update:

Oliver's MRI looked stable with no more tumor growth over the past year.  This is great news! 

His EEG showed that he has tonic seizures that are hard to lateralize (meaning trying to find if they originate in the left or right hemisphere). Dr. Thiele said it is very difficult to say when and where the seizures are coming from even within the left side of Oliver's brain. We also found out that sometimes when he isn't having a seizure he is still having electrical discharges both sides. These discharges aren't helping Oliver, but it is hard to know how badly it is impacting him. Dr. Thiele said “seizures stoke these interictal discharges so, addressing the seizures is the best step to eliminating the discharges.”

Our plan to tame the seizure monster is to work with a new drug called Vimpat which is one of the very few we haven't tried. I think the count is something like 17 different medications we have tried for seizure control. If Vimpat doesn't do the job we are going to discuss the VNS. (Click here for a blog post I wrote a while ago that explains the VNS it is at the bottom of the post). There was also talk of trying the diet again. That diet almost sent me over the edge, so that would not be my first choice! 

Surgery isn't an option right now (fine by us) because, they wouldn't know what to remove. It was a surreal experience to see the MRI of Oliver's brain and all the areas full of fluid where his brain once was.

One of the other things that we learned is when to think about giving the rescue med and when it is not appropriate. We went to Boston with some serious questions about whether Oliver was actually seizing or just post-ictal. Dr. Thiele was able to see two different events and help me recognize the difference between the two. Looking back and forth between the EEG and Oliver as he seized, she gave me great insight. Most of what I have been worried about isn't a prolonged seizure so that is great! However, there is a real possibility of prolonged seizures as the years wear on, so having a plan, knowing a seizure from the post-ictal phase is crucial. I can relax a bit more now that I know the difference.

I got to meet another family who has a child with Tuberous Sclerosis. This is always a blessing. The child was a beautiful girl and talking to her mom and dad was incredibly therapeutic for me! The mom said “I feel like you are talking about my life...exactly. Like you have been in my house for years.” It is odd to create such a deep bond in the span of 10 minutes with a complete stranger. It feels like running into someone who has fought the same war as you, knows the language, knows the lifestyle, knows all the failed missions and endless attempts to suppress the enemy (TSC).

As far as life in Wilmington, we are doing well. Oliver seems to be blooming in the language department. It has been fun to hear him singing and speaking more. He is also connecting with us more when we interact with him. Of course, he is always up for a dance party, which we seem to have daily. He is an enormous burst of joy and we are so thankful for him!

Oliver with Janise (Physical Therapist) and Danielle (Medical Eq. Supplier) who both helped him get this awesome stroller

We are also thankful for the intricate, awesome “Dream Team” that we have assembled over the last (almost) 2 years. All the way from our Occupational Therapist, to our ABA Therapist, to our Nanny we have a comprehensive plan for taking care of Oliver and meeting his needs. Now that we have CAP-C services and Medicaid (which was the final piece to the puzzle) it feels like everything is manageable on the long term! What a gift and a privilege to get to have the help of so many outstanding people!

It finally feels like we can exhale just a bit and at times I honestly thought that day would never come. Thank you, Lord!