Hi friends,
Jonah ate 23 ounces today. Most of it was a fight. He also ate at least a half a cup of Cream of Chicken Soup. He really loves that stuff. It's funny (and wonderful)!
We've had kind of a low key day. Matt's parents came up last night, and his dad helped us in the yard today while Granny had Jonah duty. I mowed the whole lawn by myself. Gerry offered to help, but I NEEDED to do it myself. It was a beautiful day, I rarely ever get to be outside, I desperately needed the exercise, and it felt great to do a project start to finish. The boys trimmed the bushes, did the weed eating, and put down pine straw. The yard is looking much better but...
I have big plans for when Matt's dad comes back the first weekend of May. I don't know if it will actually happen, but I'm wanting to do a small vegetable garden in the backyard, and do an accent fence with flower beds in the front. I am NOT a green thumb (I don't have a green thumb?... See? I don't even know what the correct phrase is). This should be interesting.
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So I found out about another baby with JEB today. He is nine months old, and his name is Daylon. He lives in California. He has Herlitz which means his prognosis is not good. He will be the first Junctional baby to have the Bone Marrow Transplant at U of M. His three year old brother is an identical match. Up to now (I think Rafi is patient #8 and McKenzie is #9) they have all been RDEB. His family is trying to raise money for the transplant (the closest possibility to a cure there is at this point). You can read about him and donate here, and you can become a Fan of his Facebook page here. Please help if you can. I know we all feel so helpless when it comes to these kids' suffering, but you could help save his life. That's pretty big. And if you live in the Corona area, there will be a Walkathon and Carnival on May 1st to raise money for his medical bills.
