So far-so good! We completed the longer and more challenging days for the kiddos and they did a fantastic job. We have really had a nice time. Yesterday was spent meeting with Dr. Whitley, getting some paperwork out of the way, and a quick trip to mall of America. Today, we plowed through the developmental testing 8-3:30 and the kids did great. Brooklyn even snuck in some naps along the way. We will be spending the night in our room resting up. I think we are ordering in when the kids and Jut get up from their nap. The preliminary results show Jayden average functioning level at 18 months and Brooklyn at 21-22 months. This is consistent with Sanfilippo. We also were told Sanfilippo manifests symptoms similar to Autism. There is cognitive function that is lost over time and they are studying where in the brain, do they see it happening-and what those parts are for. We also learned that Sanfilippo causes a “brain confusion” so sometimes, the dots don’t connect in order to perform tasks they may know how to do or even language to communicate. They may want to do the right thing, or know how to do it, but their brain doesn’t communicate the right order to complete the task. Makes sense to us. Jayden sometimes will understand what we are asking, and other times, he doesn’t. Emotionally, it is hard to hear that your soon to be 5 year old is functioning lower than his 22 month sister, and that she too, will loose the skills she is doing so well with now. We know that is part of the disease, but knowing it and seeing it are two different things. We are in good hands here, and pray that this information will help our children, and the future of Sanfilippo.
Tomorrow is the hardest on us. We have to be at the hospital at 5:30 AM and the kids both go under anesthesia for a few hours. Please be praying for “normal” and “routine”. We like those words a lot.
My phone officially kicked the can so if you have to get in touch with us, please call Jut.