I have been trying to find the time for a quick update for days now! We've been busy getting paperwork and such together for the wheelchair. I cannot wait to get this child a chair that fits her well. I only wish that her school had a wheelchair ramp. They have an elevator, but today the elevator broke after lunch. It's not the school's fault- they constantly have people out to fix it. It just doesn't stay fixed! I told her she can go to school if she likes, but if she's tired we'll have to keep her home, if she doesn't think she can do the stairs. While we're out and about she can barely walk more than 50 ft without help. I don't know how the heck she does it at school with the elevator working perfectly! She's happy that the kids have stopped asking what has happened to her. Poor little thing has been so self-conscious. When she realized that she could no longer button a pair of favorite jeans the other day she cried. She breaks my heart, but she always marches on, even when any other person would have dropped and been begging for a reprieve.
I'm NOT holding my breath that this will stay in effect, but a temporary paper Medicaid card came for her today!!! It says that the starting date is July 1, which means that her hospital visit should be covered, and hopefully they will pick up the co-pay on the chair! A $35 doctor visit by itself isn't so bad, but her Orencia co-pays from September and October were between $150-$300. There were 3 of those, plus the $200 in prescriptions a month. The doctor copay from the hospital was $300. So far, that's the only bill we've gotten in. With Kevin still on unemployment and me not making a whole heck of a lot, Medicaid will be a Godsend. Heck, even when Kevin was working the medical bills were drowning us. Our insurance company never wants to pay the Opthamalogist. That's usually about $200 there. I almost cried when I saw that paper. I think my heart stopped for a minute!
The only other real item to note is that her PT told us that all of the therapists at her center are allowed to recommend 2 kids each for a reward from the commission. ( I think that's what it was. We were so shocked and touched that I missed half of it!) She recommended Emily and another girl with similar issues. She said to expect something good from them for Christmas! I also had a rather lovely conversation with the audiology secretary. Emily has her own prize drawer there next to the audiology secretary. How cool is that??? It's the little things like that that really make me feel so blessed. Seeing the compassion people have for a small child that's struggling really makes my heart melt. That's what the secretary and I were talking about. She seems to be a very special lady. She was telling me how her baby was born with her diaphram not closed up correctly, so her intestines were all discombobulated. She said that even now the success rate for a surgery like that isn't very high. She spoke about how stressful it was, and she said that she wished that she knew then what she knew now. Her daughter is currently in her residency as a pediatrician at All Children's Hospital. She wants to heal babies. Conversations about what's important don't come often, not from people that really understand. That is a blessing to find, too.
I also have some stuff at work in the next few weeks that will make things crazy but will be exciting! I'm really looking forward to it!
Well, Brownies was fun tonight too, but once again it is already past my bedtime. How does this always happen? Tomorrow, please stop and smell the roses. Or the breeze. Stop to notice the cloudless sky or the fog. SOMETHING beautiful. And be thankful for it. We are all but a grain of sand.......
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Friday, December 3, 2010
Some little blessings....
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Thank you so much for the sweet comment on my blog, it means alot esp coming from someone who totally understands! Your little girl is such a trooper, I will keep her in my prayers! Awesome news about the medicaid, I can not believe how much you are paying for everything, that is crazy! Hang in there everything will work out :) I am going to to my blog roll if you do not mind!! Happy holidays!!ReplyDelete