Disappointing News
October 20, 2003 by · Leave a Comment
I have disappointing news to share. I was informed on Friday that our insurance company will not pay for a power wheelchair for Savanna. Their reasoning is that “a 2 year-old does not need a power wheelchair”. They will allow benefits for a manual wheelchair. I have asked them to tell me at what age do they think my child needs a power wheelchair, since she cannot operate a manual wheelchair. I also informed them they were discriminating against our child by telling her she is not allowed to have her own mobility and we would be appealing this claim.
So, I am here asking for your help. Anyone who might have any information that could help would be appreciated. I have contacted Texas Scottish Rite Hospital, Families of SMA, Cook Children’s Home Health and Texas DME. FSMA is sending me an article titled, “Use of Power Mobility for a Young Child with Spinal Muscular Atrophy” that I will be attaching to the appeal. I have also written a lengthy letter to Tim’s human resources person at Entertainment Publications, since this is only one of the many problems we have faced with our insurance company. We are fortunate that MDA helps by allowing us $2000 every three years towards the purchase of equipment, however at this point, that would not make a dent in the $21,000 of the cost of the wheelchair. I am still hopeful that we will somehow get this chair paid for.
In addition to the daily struggles of supporting Savanna, I have the daily battles with our insurance company. I have to fight with them every week just to get things paid for that should not even be an issue, such as the ambulance ride we took last January. Please pray that we will get this issue resolved and get Savanna her own power chair — soon. We are in desperate need of some type of wheelchair that will support her enough that she can sit up. I’ll keep you updated as we hear anything.
Great News from the Doctor
October 16, 2003 by · Leave a Comment
Hello everyone!
We have great news to share again. Savanna saw her pulmonologist again yesterday and she said her lungs look great! Not only that, she said her chest wall has gotten stronger and her paradoxical breathing has started to reverse itself. Paradoxical breathing is something that happens in people with neuromuscular diseases. While the rest of us inhale and our stomach sinks in and our chest expands out, Savanna’s breathing is opposite. She breathes with her stomach. When you watch her breathe, she expands with her stomach rather than her chest. This causes problems, of course. This makes people with neuromuscular disease get the “bell shape” where their chest becomes very narrow and their stomach protrudes out.
Since Savanna has been using her Cough Assist machine that we got a few months ago, it has already helped to reverse the paradoxical breathing which, in turn, helps her chest wall get stronger. That will help her stay healthier and breathe better. I continue to believe that God is strengthening her every day and is healing her from the inside out. Her doctor was so pleased with how well she looked and how great her chest x-ray showed her lungs to be. We will continue to pray and believe that the trach can come out this spring.
As I hold my little girl in my arms, I am so thankful that God continues to give us the faith and hope that she will be okay. Although picking her up is like picking up a 23 lb. rag doll, I know that someday she will be healed and she will be able to sit upright in my lap. I think that is the thing that is the hardest for others to understand about out situation. While most people look into the future and how their children will be, we have the blessing of living for today, one day at a time. I guess I am never quite prepared for the usual question I get from people, “what is her prognosis?” I guess because of our strong faith, we do not look at her as being terminal. How could we? I just simply answer everyone the same. We don’t know, because the doctors don’t really know, but we do know that she will be healed. Don’t know when; don’t know how; don’t know where. I just know. There is no way that we could continue the daily struggles if we thought that this is how life with her would be forever. God gives us hope, which is the greatest gift of all. Not only the hope, but the belief that she will, someday, sit up, stand and walk. That she won’t depend on us for her every move and daily care.
I know that those of you with small children will appreciate that we are dealing with the normal “2 year-old attitude”. That I somehow thought my precious Savanna would never go thru it makes me just laugh out loud. Don’t get me wrong — I know that compared to most 2 year-olds, she is a piece of cake. She doesn’t have the luxury of throwing herself in the floor and throwing an all-out temper tantrum when things don’t go her way. She doesn’t have the energy to scream or stay upset for very long. God gave her such a peaceful spirit that she can be content doing absolutely nothing. I have a feeling that discipline could be an issue. It’s hard to spank her (she laughs when I spank her hand), time out is nothing to her because she will lay in her bed for 2 hours waiting to fall asleep and is perfectly content to just stare around her room and somehow entertain herself with that. She continues to improve on her speech. Since she is so limited on the toys she can play with, her constant word is “book”. She will let you read or show her books from morning until night.
She still can’t say “daddy or dada”, but somehow her nanny actually allowed her to learn to say “Papa” without being able to say “Nanny”. It’s true that parents mellow with age! Savanna’s friend Darrell Alan has been on the valproic acid now for about 2 weeks. There is nothing to report yet, but we knew that it would take a few months before anything might be noticeable. We are still waiting for the insurance company to determine whether or not they will pay for a power wheelchair for Savanna. Please pray that those details will be worked out soon and that we can move forward with that. Savanna is really needing her independence right now and I cannot sit her up much because of lack of support. It is more detrimental to sit her up without support because it increases her scoliosis. Her wheelchair will have all the straps and cushions to hold her upright in a position that will not cause her to slouch and curve her spine even more. The price for the power wheelchair is a little over $21,000 and she will also need a manual wheelchair for backup. I ask that you all pray for her to get a power wheelchair, paid in full by the insurance, SOON.
As always, thank you for your prayers for Savanna, as well as Tim and I. It’s a little scary going into respiratory season after the time we had last year with it. Our house is still on the market and they are just about to pour the foundation for our new home (which will be wheelchair accessible for Savanna). We are almost done getting the new space ready for Curves, so life in the Rush home is busy as usual. I will update you all next month after we go to Scottish Rite Hospital and I get more information on the drug therapy trial that Savanna might be able to participate in. Until then, please remember Savanna and all of her SMA friends (and their parents) in your prayers.