Well friends, Blaise and I leave today to go to Boston for three weeks! While a change of scenery will be nice, our trip to Boston is not exactly a vacation. Blaise is going to intensive therapy at a NAPA Center there- so basically Blaise is going to Boot Camp. It makes me laugh sometimes when strangers overhear me talking about taking my son to intensive therapy. I get some very judgmental looks, that I assume are only because they don’t understand what kind of therapy I am speaking of- nor do they know that my son is 3 years old- lol. But all joking aside, let me share with you a little bit more about this.
I first learned about NAPA Center (https://napacenter.org) at my very first CDG conference shortly after Blaise’s diagnosis. The woman who founded the first center in LA had a son who had a near drowning experience, and was left unable to walk or talk afterwards. The doctors told her that he would never walk or talk again- but she didn’t accept that for an answer. She took her son all over the world in search of different therapy techniques, and once she found one that changed her son’s life, she wanted to bring that opportunity to the USA. These centers have highly trained physical, occupational, and speech therapists who utilize novel equipment and techniques that provide big results in a relatively short period of time. Some estimate that the gains children can see over these three week periods can equate to the progress they would make over 6 months to a year of typical therapies. Even Blaise’s teachers and therapists at school mentioned to me that they have had students in the past that did these programs and came back a whole new kid.
Now obviously, I am trying not to get my hopes up too much, but I am really hoping for some big gains over the next three weeks. Blaise has been on full dose of AT-007 for about 4 months now, and he continues to improve. His speech has been great- he uses multiple words to make a simple sentence, is trying out new sounds, and even now calls V and Hennessy by name. *Quick side note- Hennessy- aka Henny- our Bergamasco Sheepdog joined our family last October and we could not be more in love with this sweet pup. Here is a picture of our floof*
Thank you for allowing me to provide you with our “pup-date”. Now back to our regularly scheduled programming….
Blaise has also been making gains in his stability! He recently received new AFOs and those have given him a little extra boost! For anyone unfamiliar- AFOs are braces that go up to just under his knee. Most notably he bends at his knees a lot more versus bending at his waist to pick things up. He also is working on standing and walking accuracy as well.
After receiving his schedule for NAPA Center- I learned that these sessions definitely live up to their name…because this schedule is “intense”. Blaise will receive 4 hours of therapy a day, Monday through Friday. They will use a strategy called DMI or Dynamic Movement Intervention (more on that here https://napacenter.org/?s=DMI) that he will have one hour a day, one hour of speech per day, and also two hours in the Neurosuit (https://napacenter.org/?s=neurosuit). To put it into perspective, currently Blaise receives 4 hours of therapy- PER WEEK. So he will be doing a week of work in one day- yikes!
I wanted to keep this post short and sweet and to let my Pinehurst people know where I am in the event you think I fell off of the face of the earth when you do not see me for awhile. But more importantly- Blaise and I have but I have a few requests from all of you readers out there! Here are our requests: 1. Please pray for Blaise’s strength, focus, and patience over the next three weeks (and maybe this mama’s too :)). This will be a lot of work for him, and I really pray he can get the most out of each of these sessions and not get too tired. 2. Pray for Blaise’s health over the next three weeks- we need him happy and healthy over these next three weeks so we have no missed sessions. 3. Pray for all of the other children, families, and therapists who will be at NAPA Center this week, and every week. That they also find patience, strength, health, and progress during their time at the center. I hope everyone experiences some kind of miracle and sees their child do something they were once told to never expect.
So now we head to Boston, and let’s cross our fingers that we see some big moves by our smiley, curly haired, sweet, Blaise!
