Of course behind the scenes we've also been fighting hard to get approval for a Mygo Lecky Feeding Chair with hi/lo base. It's not going well. It's deemed as a non-medical necessity even though Noah needs this for safety. His special tomato seat that was donated by a loving foundation doesn't have the safety we need. Noah's tone is so strong he can snap the latch on the back neck piece undone which causes him to slip out of the harness and hang by his arms. The equipment vendor thinks I can just find private funding. Everyone thinks I can find private funding. No one has any clue on how hard help is to find. It's nearly impossible to find. We're still fundraising for Noah's service dog. There's now way on earth we can even come close to fundraising for everything Noah needs. And there are so many other items that we need to fight for soon not limited to but including a bath chair and stander - all of which face a similar denial of non-medical necessity, won't improve quality of life, or not offered as a paid benefit under Medicaid.
We re-measured Noah for an exchange on his Freedom Concepts Bike yesterday. And had a re-look at accessories and features Noah would need. His therapist had a long list of items she felt Noah really needed on this bike. And although I haven't heard back from Freedom yet, my heart tells me that there is no way Freedom Concepts will be able to accommodate Noah's needs without telling me the same thing as Noah's equipment vendor - go find more funding.
I prayed so hard that God would make SSI stop sending me notices. He granted my prayers and for a whole month I had a reprieve of no notices. However, last Friday a big stack of mail with a handwritten "return to sender not at this address" arrived in my mailbox. The US postal service had been delivering my mail to another address this whole time. The address is correct on the label so why the Postal Service wasn't getting it right is beyond me. I can only hope that this mail problem isn't a part of my identity theft development. As always I'm confused by SSI's calculations of help for Noah, but he's still active for benefits at this time so that's really as much effort as I can give it right now.
In addition of course to all the above difficulties; I've also been battling a sciatic nerve problem every time I pick up one of the boys. And the pain is so intense it stops me from completely walking on my right leg. The reality simply is carrying a growing Noah with his arching tone, lack of head and trunk control is taking it's toll on our bodies. It's hard. We have a lot of stairs and we have to carry Noah everywhere. This is far from a handicapped accessible home. Just lifting him out of the tub his a big challenge. And everyday I carry him down a large flight of stairs from one room to another and several trips in and out of the car for therapies, not to mention that special needs equipment weighs a ton. I keep trying to find ways to get my body to go the distance after all I will have to do this for the rest of our lives. And I'm the only set of arms Noah has during the day.
We're rather used to life storms, but sometimes these storms are like hurricanes. And right now this hurricane is knocking us off our feet. As always we know tomorrow is another day and that each new day has the hope for miracles.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.