Final Boston Update

Here is the full Boston report. Sorry it took a while to post.

First off we have to say that we fell in love with the city of Boston. It is a lovely place and very distinctive. It was energizing to walk on the beautiful streets and interact with such a diverse group of people. We found people to be very friendly and helpful. It seemed like everyone we saw was wearing a baseball hat with a “B” on it. Our highlight of the city was when we had a truly epic date night on Tuesday. It was a magical evening! We can’t wait for next year to experience Epic Date Night Part II.

At the New England Aquarium looking at the seals.

We stayed with an amazing family in the heart of the city. We are so happy to call the Farrells our friends now. We’re very thankful to have been invited back for next year’s visit. We had a great time seeing how folks live in the city with three young children. It is very different than our suburban living with a mini-van and free parking everywhere. My favorite afternoon was when we walked to a Starbucks around the corner, I got a Pumpkin Spice Latte, then we walked to the neighborhood park. The park was an interesting mix of parents (mostly older) and nannies (mostly younger). The weather was lovely and Oliver made himself right at home, making friends and messes.

This was our home away from home in Boston. It was such a blessing!

Traveling with Oliver was quite an adventure. Our friend Trista turned out to be down-right indispensable. On the way to Boston, Oliver had a dirty diaper that needed immediate attention (we did not have extra clothes- mistake #1). Of course hewaited to make this “prize” until we were already on the plane. We had to change him in the seat as people hurried by and boarded. We got some odd looks, but what else can you do? Then, on the way home Oliver made the mistake of eating too much and running too hard within 10 minutes, which led to him vomiting on the airport terminals fine vinyl chairs. This time we had extra pants(b/c the plane ride), but not a whole outfit. Thank you Lord that we had our carry on luggage so we could clean him up. There are many other tales in the city of Boston, but the to and from part is a doozey.

Andrew held Oliver while he had his EKG (it took 40 minutes!). Oliver did really well! He watched "Elmo in Grouchland", a movie Andrew worked on years ago. We thought it was sort of cool that they offered to show Oliver that particular movie.

OK, now to the medical stuff: On Tuesday we had a great meeting with the doctor we traveled so far to see. Please forgive me for the bullets. It is difficult to organize all my thoughts. Here is what we learned:

- As I stated earlier, Dr. Theile said Oliver isn’t and won’t be autistic/be on the Asberg’s spectrum.

- She said she would consider Oliver to have a “mild” case of TSC. These two points were the source of great relief! We really already thought most of these things, but to have her confirm it made all the difference.

- She told us that most people with TSC have higher I.Q.s than people without, but virtually all people with TSC have anxiety issues of varying intensity. This is something to consider as Oliver gets older, particularly as it relates to school.

- She told us that the one tumor I was so worried about wasn’t anything to worry about. She said it could grow almost indefinitely and be left there. The one area that a tumor would have to be taken out could be in the “Foramen of Monroe”, although right now Oliver has no tumors in that tiny area. FYI, this area is where your spinal fluid passes through, so a tumor that blocks that flow could potentially be life threatening.

- Dr. Theile wants Oliver to be seizure free and believes this is achievable. We are increasing his current med to see if that will get him to zero seizures. If this med doesn’t work she has another 2-3 that have worked really well with other kids that we could try. Seizures meds take a while to dose up so, it is best to stay with what we have and see if it will work properly. If meds don’t work, the next step is a specialized diet; the next is neurosurgery. She was very confident that meds would control Oliver’s seizures and no further steps would be necessary right now.

- She did not see a need to do an ambulatory EEG.

- She explained the idea of “kindling”, which is the idea that over time the more seizures you have the more severe they can become. I might do a separate post on this later because I think it is fascinating!

- She said Oliver would need to come back in one year to have all his tests redone. The best management of TSC is to be preventative. There are so many organ systems involved that it makes sense to do the annual re-testing in the same place at the same time every year.

- She said over and over “My job is to minimize the effects of TSC on Oliver’s life” “Your job is to enjoy him and be a parent” It was such a relief to hand off all this paperwork and stress to the expert! Andrew and I still have a vital role, but we don’t feel like we are directing his care anymore and that is refreshing!

As far as having other children, we feel hopeful. Dr. Theile speculated that because Andrew’s family is very mildly affected with TSC we have a high chance of having a mildly affected child (if he/she were to have TSC). She couldn’t promise we wouldn’t have a severely affected child, but the statistics are in our favor. Of course, there is a 50% chance the child wouldn’t have TSC to begin with. She also said that if I got pregnant they would monitor the baby very closely. She said that again, being preventative makes a big difference in the outcomes for children with TSC. So we feel encouraged that if we choose to try to have another child biologically we are in the best situation possible in relation to TSC risk management. We already have the TSC management piece set-up in our family, so it wouldn’t be as hard as it has been this time with Oliver.

Dr. Theile also suggested that Andrew have a few tests to check on his health. Again, in a preventative way. We were surprised by this, but she was rather adamant that a baseline should be established in the event that anything else happens. She was also interested in the fact that Andrew’s mom (we speculate she also had TSC and didn’t know it) died of pancreatic cancer when she was young. Apparently, worldwide,there have been four reported cases of pancreatic tumors/cancer in patients with TSC. Of course, we have no way of knowing for sure what happened with Andrew’s Mom, but it is something to be aware of and monitor closely.

So our next step is to get Oliver’s blood levels checked for his medication. It can cause problems with bone density, an unfortunate side-effect. We can increase the dosage as long as that isn’t a concern. Hopefully, the medication will “optimize” (meaning it totally controls the seizures) soon and life will be a very good, new normal.

This experience is exactly what I had prayed for. We are still waiting to see how the long-distance communication works, but for this initial visit I am 100% satisfied. I am thankful that God opened countless doors that led to an efficient trip. I now feel like we can manage Oliver’s care in a reasonable fashion. The future is still unknown, but the unknown feels less scary than before. We’re encouraged and thankful.

One of my favorite moments of the whole trip. Oliver on Andrew's shoulders as we strolled down Commonwealth Avenue on a perfect Boston night. Oliver was so jolly and sweet, giggling every 30 seconds. He loves his daddy! It was a very special time:)

Oliver’s sweet friend Crawford (almost 4 years old) sent a letter to us in Boston. His Mom ask if he wanted to include a bible verse in the letter, and he came up with this verse for Oliver. How sweet is this? Jeremiah 29:11 “For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.”