The kids are better and I am doing well on a steady diet of sudafed and motrin, thanks for asking. Its funny how kids can just bounce in and out of the sickies pretty fast and it takes forstinkingever for us add-dults to overcome the same thing. Makes me feel old...in a sort of need to take more vitamins, drink more water, and eat a daily regiment of prunes and bran cereal sort of way...that kind of old. Forgive me...it's the sudafed brain fog talking.
Nathan had PT this morning, and it was clearly evident that he has regressed some for the first time in quite a few months. He is back to the hump-back sitting, not able to fully straighten up where the band of weakness that circles his chest and back is...so when he sits, he slouches really badly. We worked for 2 months on strengthening that part of his back and he has regressed back. It's frustrating, but we hope that he will bounce back quickly and regain what we have worked on so diligently.
We were aware that it could happen with kids who have metabolic issues, so disheartening as it has been, it came as no surprise...the recent sicknesses have seemed to put on strain on his body causing him to regress some. His muscle tone was pretty bad for the duration of the sicknesses/shots and it caused us to lose a little ground. But, it can be regained...and hopefully quickly!
On a great note, we have been able to lessen his PT appts to once every 3 weeks. We have realized that Nathan has the skills he needs to move around, and all we are working on right now is strength and endurance and stretching out his legs muscles that are constantly too tight...these are things that I can work on at home daily, so there is no need to go to PT every week. His muscle tone issues can not be changed, but his strength can be helped so we will probably constantly have to work on this. As much as I LOVE taking him to PT, this will help us get at least some normalcy to the weekly routine again. We may even start going to the library every Tuesday like we used to! Our therapist wants me to order some "hip helpers" (look like little bike shorts) for him to wear when he is moving around on the floor to help his hip abduction. So, all in all, we are moving forward!
Nathan's swallow study test is next Wednesday, and when I was talking to his GI doc on the phone last week, he mentioned that he probably wanted Nate to have a Gastric Emptying Scan done sometime after the swallow study. Obviously, reflux in low toned kids is taken pretty seriously. A few of his docs think that Nate may have delayed gastric emptying (DGE or gastroparesis) that is causing his reflux to worsen, and there are some meds out there that can help with that. Sometimes it is hard to know which tests truly need to be run and which are just precautionary stuff. Hopefully things will quiet down a little more soon.