Thursday, March 17, 2011

Happy St. Patrick's Day

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Spring is in the air, I can smell it and hear those delicate birds that seem to appear right at the sign of better weather on the horizon, and my rock garden is starting to come alive, baby crocus blooms already risen, just awaiting their tulip companions next to them. Which means I'm that much closer to planting Noah's special garden.

I already planted him some tomatoes, sweet peppers and herbs in the house last weekend. I pray they grow, I'm not great with seeds, I do far better with starter plants, but it was really important to start something from seed this year to me. To watch it grow, and help and nurse it along until it gets healthy and strong and ready to pick. I put Noah's feet in the dirt while I was planting. It didn't go so well, the soil was so soft out of the bag that I think he felt like his feet were sinking and disappearing. I keep trying to open his world to new sensory opportunities, but it was just too much too soon. He cried for a half an hour after wards and I felt terrible that I had tried to offer him a new experience that he simply wasn't ready for.

I found a really great deal on soil, Chris had to travel some distance to retrieve it, but it was nice that we got almost a $4.00 discount per bag, which is great when you're after organic certified soil with very little funds for projects. Chris came back and had to tell me that some soils even contain bat poop, like it was an important fact I needed to know right away. It sure gives a different meaning to what my grandmother used to call chicken high-high. I guess she would have called that bat high-high? In any event, I also found a sign that will read Miracle Garden on a stake that I can put in Noah's little garden. I think it will be the perfect little accessory. The garden will get lots of sun, partial shade and fabulous moonlight.

I also got confirmation that Noah's gait-trainer has finally made it off of suspended status and was approved. Yes I know I was ready to fall over myself when I got the call. I don't know if I'll be as lucky to get that news with a stander or new chair. Noah has also had his weighted blanket about a week. It makes him really hot, so we had to pack away the feeted fleece jammies, and opt for the cooler spring line. I can't say it's really made a huge difference in his sleeping patterns, but he doesn't hate it. But come summer we won't be able to use it at all since our home has no air conditioning and a window unit is not an option in his front facing room. We all roast sleeping on the top story of this home.

Noah's Weighted Blanket

Now that Noah is getting his gait trainer I suppose I need to look into finding a way to make the house a little bit more handicapped accessible. I really don't know where to start. I guess I see us a bit stranded. I anticipate there is no organization out there that covers the entire amount to come in and put in new floors and get rid of your carpet, and Chris and I don't have two pennies to rub together for such an endeavor, we're just doing the best we can to maintain a roof over our heads and get Noah all the therapy we can.

We also re-decorated Noah's room with little wall stickers and I think it turned out really cute. Noah seems to be calm in there when I change his diaper and clothes so I think he in his own way understands it's his space. I wish he had the ability to come and go and play in there as he chose, but he still spends the majority of his day on a blanket in the family room with me watching TV and doing therapy. The summer gives us a little bit more options because I can take him outside and lay him on his therapy mat and he can watch airplanes go by, watch for butterflies and hear the birds chirping. He also loves to watch the leaves move on our neighbor's massive tree.

Noah had a great St. Patrick's Day, (he gets that from my side...) He sported his green, even ate his Ella's Organic Kitchen Apple, Rutabaga, Spinach meal for lunch which even looked like liquefied shamrocks. He did well at pool therapy, he wasn't as grumpy today. Some of his therapists have encouraged me to explore a local hippo therapy place and cranial sacral therapy to assist Noah in his continued struggle to gain head and trunk control. However it doesn't matter if a doctor, or a therapist recommends any and all of these things, as insurance won't help us pay for it. That's such the tough part. You have experts in their field advising you to attempt these therapies, yet you can't afford them out of pocket. It lays heavy on my heart a lot. Because it gives you that inner failure feeling. His therapist gave me all the brochures on them. I haven't sprung it on Chris yet, as I'm not sure he can take much more, he's financially doing his very best to provide for his family in all the best ways. And in his heart I know he wants all we can do for Noah too.

I also researched this little place in Florida that does dolphin therapy. Although Noah is too young for it now, and lacks the head control I think he would need at this time. I envision that if Chris and I ever lucky enough to leave home it will be to some place for a type of therapy to help Noah. I most certainly don't see Hawaii, Italy, or New Zealand in our future. Nor do I think we'll get to experience typical vacation family spots. Special needs is life altering, and it alters every single thing in your lives.

Hopefully Noah will take a nap before the corned beef & cabbage dinner is ready, and we'll have a quiet night at home working on vestibular motion and occupational therapy brushing for tactile sensory stimulation. Just a another day in the life...


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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.