Round 2. Minnesota was a bit easier the second time around-now knowing what to expect. The kids did a great job and one of the testing days was even cut a bit short so that made it even easier. Unfortunately there isn’t much to actually do in a hotel with no pool, but we are just so thankful SOMEONE is doing SOMETHING to explore Sanfilippo and we are glad to be a part.
I will say, having both of your children under anesthesia is still hard. I try to do stuff during the 4 hours to keep my mind off of it, like blogging. This time, we met a really nice lady who works in the Minnesota education system specifically with children with special needs. She even gave us her home phone in case we ever got in a bind while up there.
Another nice feature is the status board. You can watch where your loved one is (waiting, OR, recovery) so you feel a bit more in the loop.
Dr.’s say that they see some regression with Jayden from the last time they saw him, 18 to 14 months. They said he is in the second stage of Sanfilippo. Brooklyn is entering the first stages, developmentally testing at 24 months. It never gets easy to hear. In fact, I feel like, we continue to adjust to Sanfilippo, and it continues to strip us of our children…day by day…little by little…that we don’t acknowledge what is happening until someone acknowledges it for us. I still am not a huge believer in measuring someone with a test, although I see the truth and benefit in testing….I just think other things matter more. 18 or 14 months doesn’t change how we love him. We just do. So-in the middle of “adjusting” or it this “new normal”…it still requires a constant surrender.
We will be returning for our annual in the Spring/Summer…pending the arrival of baby 3. And then, I believe one year after. Again, they are a part of a natural history study of Sanfilippo, basically a control group for the kiddos getting treatment in the UK, with hopes that there will be forward progress in bringing treatment here soon.
