Many prayers please for my sweet little grandson Corbyn. The docs do not know what he has. He is in the hospital in Normal.IL . He started with 104 temp and weird rash. All tests have been negative but I have been researching and I think it is Kawasaki disease as our doc here suggested yesterday when we had Lizzy in for her wellness check. His fever has been down but the weird rash that is causing bruises keep getting worse. Its hurts me so much I can not just go up to the hospital and pick him up and hold him. He just started walking yesterday. He will be a year old in a month. Its tears me up to know I can not be there for Dawn. We can not expose Elizabeth to any illness.
We took Lizzy to Easter Seals today for an eval. It was a long day but I think we will get the services we need for Lizzy. We live them very much. The OT and PT seem to be very excited to meet Elizabeth and seem they want to help her. They are going to start swim therapy but the question is when. It may take awhile because of Lizzy has to have medicaid approval. The OT and PT had never had a seen a child with type 1 SMA. One of the other PTs popped in to see Elizabeth for a minute and he said he had seen SMA before. They were going to check out her web-site and find out all about her. Elizabeth liked them also so I hope this gets approved quick! The OT measured Elizabeth for splints for her hands today. My request. Elizabeth needs some some hand splints because she is on the computer a lot and needs the extra support to keep her hand from getting more contracted. She is stretched every day but needs help with her hands We got to see Gretchen the lady that serial casted Elizabeth a few years ago. Great lady. She saw Lizzy and came in to say hello.
Lizzy had a wellness visit with DR.Hough yesterday. Its been awhile since he has seen her. He was awed at how well she is doing . He could not stop talking about how he thinks her diet and home care is why she is doing so well. He really believes the donor breast milk has helped keep her so healthy. She has had only two sinus infections all winter and that is great. Its amazing how great she is doing. Makes you feel like you are doing something right when you get a great visit. Lizzy is up 3 pounds since Sept.
Again, please say a few prayers for our Corbyn to get better soon. Poor little guy. Prayers for all the sick kids and keep Lizzy in your prayers.
Lizzy is wireless now so I can actually get online and update more often!!
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth
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