On August 20th the Noblesville Eagle Riders hosted their annual bike ride. Jackson was chosen as the honorary guest for this ride and we could not believe how many people came out to support Jackson. Over 200 motorcycle riders did the 120 mile bike ride and Poker Run. The day was fantastic. It was so humbling to see so many people who just wanted to help. By the end of the day we were so overwhelmed with love and support of our community. Jackson had a great time watching all of the motorcycles as they left for the ride. I know I keep saying this but it truly was an amazing day! We are so grateful for everyone who was involved, and all of the local business who sponsored the event as well.
Jackson has been doing very well in his therapies. He has been learning how to stand in his Gait Trainer since he received it in July, and now he is trying to take some steps! He has been doing great, and we know with Jackson that he will do things on his own time. His physical therapist is very impressed with all of the improvements in his muscle tone and body awareness. We are now starting to check a few exercises off of his (very long) list, and add new ones as his goals are being met. His Speech Therapy has also been going well. It's hard to think that just 3 months ago Jackson could not vocalize at all, and now he is full of sounds! We do feeding therapy with both Speech and Occupational Therapy, which gives us more chances
to try different things with Jackson as far as food textures and taste. He will eat pureed food like a champ, and is taking anywhere from 4 to 8 ounces at a time! When it comes to textured foods (anything other than pureed) Jack tends to have trouble with the whole chewing breathing and swallowing part. He has gotten better since we started, but that too is taking time. We don't force him to eat by mouth since he has the G-Tube and we want eating to be a pleasant experience for him. He likes to stick everything in his mouth now, which has not always been the case- That in itself is half the battle! Our original goal was to have Jackson taking 30% of his feeds orally, which on a good day he exceeds. So now we are working on giving him 50% of his feeds orally, and going from there.
We have also added a new device to our "bionic baby." We struggled with Jacksons feeds for so long and were literally feeding him all of the time. With a bolus feed you dump the food directly in to a syringe and let gravity push the food in. With Jack you could only do 2 ounces at a time and wait at least a half hour or he would projectile vomit all of the contents of his stomach. It took nearly 3 hours to feed him 8 ounces of food, and then it was time to feed him again! So Jackson was never getting hungry, nor was he ever feeling full. So we decided to switch him to a feeding pump. Conventionally the feeding pump is used to pump food in continuously at a slow rate 24 hours a day, but in Jacksons case we are using it to pump in an entire feed (8oz) in about an hour so he can feel full, digest, and get hungry again. Day 1 Jackson threw up 2 feeds and I was getting discouraged, but by the end of day 2 he did not puke once! That's a huge deal for him, as he would throw up at least twice a day. From then on it has been great! He is tolerating his full feed with no issues and only has to be hooked up for an hour! We also have been able to SLEEP! Jack still gets a night feed and when he was bolus fed we would have to do the same routine of 2 ounces then wait a half hour etc... Until his feed was finished. Now we just hook him up and let it run for an hour! We also noticed that Jacksons interest in food became greater after switching to the pump, and he took off with his oral feeds almost instantly! It is also very portable and we can now feed him much easier when we are out and about! ( sorry if this paragraph doesn't make sense...it does in my head lol)
Sorry for the long post. I just want to document EVERYTHING :)
Here is a video of the supporters taking off for Jackson's Ride! click here to view it!
