Well, its less than a week before Christmas and we have had lots of snow, freezing rain and power lines down. We are so far okay. We have back up in case of situations like this. We have Marine battery, Sine wave inverter and the trusty gas generator.
My daughter Dana has been with out power since wee hours this morning and it may not be on till SUNDAY!! Jessica (my daughter) lives across town and her whole block is with out power. I guess the tranformer actually fell from the ice storm last night.
This week we got the second denial for Lizzy's RSV shot and the water heater went out. We will appeal again I hope. One step foward and two steps back it seems all the time. DR. Hough (Lizzy's doc was furious with the state/insurance . He said "They just do not not get it. He is so afraid for Lizzy right now his nurse was telling me. He asked the state doc on the phone "do you not know what SMA is?" Do you have other kids with ths disease?" He is not a happy guy right now. He does everything he can for Lizzy. She has two Letters of Medical Need and they still refuse her. She still weighs less than 26 pounds. It isnt like she weighs to much. If Lizzy catches RSV she will be hospitalized for weeks and it could kill a child with SMA.
Lizzy started having belly issues last night and is now back on bland diet( donor) Breast milk, Tolerex and pedilte. She is doing so much better today. We had not changed a thing and she started the blood up her g-tube again. First time in about a year. What is weird another family had called us about that last week and now Lizzy is doing it again. At least I know what to do. Lizzy is back on prevacid also. Nothing new in her diet at all. Really strange
Paul got the water heater fixed so that is good. He just had to get parts and saved us almost $500.00 we dont have. Thank goodness.
Paul is on shut down and has a meeting Monday the 29th on what is going to happen to his job for sure. Its so scary out there right now. What will we do? He is doing somethings around the house today so he can FINISH the Bathroom upstairs. Whhhhhhhoooooo hooooooo . He is very worried we are going to have to sell the house and move. He will not be paid for the shut down. Its sucks to have this happen at Christmas. We usually send some of our good friends presents at Christmas but.... not this year. I think that hurts the worst not being able to to do that. The good thing is I have family and friends that mean so much to us. In that fact my heart is rich because I have a great family and great friends.
Many special prayers to all the sick kids out there.
May you all have a healthy, happy holiday season.
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