Neurology update.

Yesterday was another early morning for us. I was hoping both boys would sleep on the way there but that didn't happen. Thankfully I only had to wrestle with them twice.

As we entered the lobby area of the hospital we were met with these adorable dogs and their owners.

Little did we know the boys would be on the Riley Childrens facebook page and Instagram. What a surprise. The boys really love animals but unfortunately we don't have the time to care for any. When we are at the hospital we love seeing all the therapy dogs.

On our way to our app we ran into some more friends and got to exchange hugs. We love running into our "Indy family" as we call them.

Now onto the app.
Overall Dr Smith is really happy with how Broc is doing. She did learn about his new mutation as its been about a year since we saw her last. It is really difficult to know what or how it will impact Brocs life. We did learn that he is at risk for seizures. She told us what to look for and to call 911 immediately. Because his mutation effects his extra cellular matrix which is everywhere it effects his whole body. We spoke about all the regression he is having with maintaining his muscle strength, loosing his balance, falling a lot and loosing some skills. Unfortunately everytime he has a virus everything in his body is effected. Its like little pieces of his brain are effected and then he has to learn to do things over again. She kept stressing that no body knows anything about this mutation as Broc is the only person in the world so he is writing his own book. We must encourage him to do anything he wants within reason. We must take each day as it comes. The best we can do is support him as best we can. Treat him and keep him comfortable on the bad days. He needs to continue with OT and PT to keep maintaining his muscle strength and co-ordination.

After the app we met Kelly and Aiden for lunch and then we headed to the Play Zone. There we met some more cool people.

The boys were really into their game when Chase from Paw Patrol came to say hi. There were a lot of volunteers there too which made for a fun afternoon.

All in all it was a long day but a fun one.

Now to keep Broc healthy for his upcoming surgery at the end of October.

We did hear back from Brocs Vascular Team and they are concerned about his legs. They want him to be completely healed from his cleft surgery and then they will schedule an angiogram to see where the blockage is.

Thank you for all the love,support and prayers for our family.