I've been trying to balance mothering a special needs child and a newborn. It's much like probably having a twins, trying to feed both at the same time, soothe two crying at the same time, carry two at same time. Except Noah is much bigger, and harder to care for than a little ten pound baby. Noah is at least able to look at his little brother now without a meltdown which is improvement. Luke of course has adored Noah from the beginning and is just patient and quiet.
I of course have also been on a mission to figure out Noah's therapy. Which is very time consuming. His doctors and therapists have recommended Noah enroll in hippotherapy as they think it will help his trunk and head control more. They recommended a place close to us, which costs $750 for every 10 weeks. And Noah would need continuous therapy there year round. Which added up is thousands. Supposedly DDRC (Early Intervention) pays for hippotherapy but when the center contacted DDRC they said the budget could not help our family at this time. Insurance won't go near it, which leaves Chris and I on our own for funding. I don't know whether to find some type of fundraiser, or grant or where to start. When you are told your child needs it, you just have to find a way... somehow. We meet with the ranch for hippotherapy next weekend to do a meet and greet of the therapists and horses to get Noah aquainted. I really think he'll do quite well, he made a great horse connection last fall at the pumpkin patch and showed no fear and the horses took to him immediately. His doctor even was hopeful that it may even prompt speech to start. Which would be a dream come true.
I've also been trying to figure out a better way to get Noah to be more calm at meal times. He gets overly exicted and his arms just go everywhere, knocking spoons out of your hands, the food gets dumped if it gets too close to him, the dogs are loving it, but clean up is terrible. For the longest time Noah has hit his knees on the highchair tray, so we took it off, I found knee pads deisgned for crawling children, to put on him so we can try the tray again in an attempts that it may help limit some of his arm movements and that he may try to learn to pick things up off the tray. I also found a gadget called the Tumzee recommended by a friend that also has a son with special needs. http://www.tumzee.ca/
It is designed to help Noah with his hands and head in crawl pose. I hope he's not too big to fit into it. I'm also going to try hanging the Wingbo swing my mom got him downstairs to see if that type of motion will spur any type of crawling effort.
Always trying to think of ways I can better help him. I still always feel like it is never enough. That Noah has the potential to get better if I could only provide him with all the therapy and equipment he needs. Noah has been doing well with the Ipad. I've found some great sites that offer free apps on a regular basis, since we cannot financially afford to by apps for Noah. Babies with Ipads, Moms with Apps, and A4CWSN (Apps for Children with Special needs). A4CWSN is having an apps party June 11th at 9am, where you can score lots of apps that you could not otherwise afford. http://www.a4cwsn.com
Everyone that attends the app party is guaranteed at least one app that would cost money to otherwise purchase for special needs.
The Two Angels Foundation 5K walk is this Sunday. I don't think I have what it takes to run after having a baby so soon, but Noah was invited to attend the special needs adaptive dash, which I think he might really like to do. He's a bit older now and his daddy could run him to the finish line in a stroller, maybe next year he'll be able to do it in his gait trainer. That would be fantastic. It is a great cause and I would encourage all those in the area to participate and run for such a good cause: http://www.twoangelsfoundation.org/id17.html
They also serve a light lunch, goodies and refreshments after the race, and it really is a wonderful opportunity to meet other special needs families and children.
Noah is refusing to walk in his gait trainer, I fear maybe I got him the wrong one. He seemed to walk fine in it at therapy that one time and I really thought he needed somewhere to place his hands, where the kid walk did not provide for that, but I see all these other kids his age walking in gait trainers called the Pony or the Mullholland, or even the kidwalk and I start to doubt whether I made the right equipment choice for him. There are so many things out there, how would I know what is the best for him? All I have to rely on is what therapists tell me may or may not work. And now I'm stuck with this Rifton Walker and what if he never walks in it? What if I failed and he needed the Mullholland or the Pony? Now I'm just out of luck because insurance won't fund something else.
Please continue to pray that I can find a way to get Noah the therapy he needs, I'm trying not to stress about how to do it, and just letting God take the lead, it's all I can do, it's kind of out of my hands. I've tried all avenues I know to try.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.