Always has to have the finger in the mouth for pictures. She is so hard to get a good picture on. I think I took 5 and decided this was the best. She had enough. She was all in green and has her toe and finger nails painted green. She is a true Irish girl.
Hypothyroidism
Last week an>took Kylee to Milwaukee and got the diagnosis of hypothyroidism. Just another diagnosis and medicine to add to the list. At least this one isn't a major one.Hypothyrodism is very common in children with 1P35. Kylee has gained 10 pounds in less then a year and has gained 4 in the last 3 months. We are thinking it may have to do with the hypothyroidism and are hoping that the weight gain slows down.
Another Wisconsin Family
We have been told by our nurse coordinator that there is another family in WI with 1P36. I think if I am counting correctly that will be 4 families including us. There is one in Madison (yes...Ms Chloe that is you) and then 2 families down by Milwaukee. There is suppose to be another family some where around us that Chloe's family was told about but I don't think any contact has been made with them yet. So with several families in the area Chloe's mom is putting together a little weekend this summer for all of us to meet. Every year there is a 1P36 conference but this year it is in Utah and we won't be traveling to it. Next year it is suppose to be in Minnesota and I am for sure going to be there. I can't wait to make contact with this new family from WI and let them know that there are some great resources out there for them. I would be lost with out my 1P36 family.
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5 comments:
very cute O'Kylee!
Who is this anonymous person :)
Hi Karen,
Your sure have a sweet Irish
Lassie!
Sheila W.
Oh how I love taking pictures of my Taylor too. I always take a million trying to get her looking or hands down out of her face too. It does start to get better as she gets older but still is a challenge. I love it. lol She is so cute. I'm sorry that you won't be at the convention. This will be our first just cause it is in utah so close to us. It is so expensive to travel far. You are lucky there are so many families that close to you. Our closest is utah. She looks adorable all in Green. Does she let you paint her nails easily?? Taylor never likes it and eats the polish right off.
We paint her nails while she is sleeping. If she is having a day where she wants her fingers in her mouth alot then we take the polish off but otherwise the fingers are only in the mouth for pictures.
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