Happy St Patrick's Day

Happy St Patrick's Day from the McGlin's

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.

Pneumonia

Sorry it has been a while. Kylee was sick with RSV and was in the hospital for a little while with that. We brought her home and took her in for a check up a few days later and they said that she was doing great and that she had recovered from RSV. I asked if they thought she could still get pneumonia and she said no that she was past that stage but if for some reason she developed a fever to take her in ASAP. So the next day Kylee was very tired and slept most of the day. At 7:00 pm I decided to start to get her ready for bed and when I felt her she was burning up. I took her temp and when it got to 105 I stopped and said get ready we are taking her to the ER. Her temp was threw the rough and her heart rate was 200 (normally it is in the low hundreds). Then she started throw up some yucky colored stuff. We took her to our local ER because we were afraid to drive to far with her. We got her there and they told us they couldn't find anything wrong with her but her WBC was high so she must have an ear infection. I told him I was not leaving there unless he talked to Children's Hospital. So he called there and told them he thought she had an ear infection. They said to giver her a shot of antibiotic and to see our Dr the next day. Well we couldn't get in to see our Dr the next day until the afternoon and Kylee just seemed to be going down hill. I called and talked to my angel in Milwaukee (our nurse coordinator with the special needs clinic) and she said she didn't feel she could wait that long and to call our regular Dr back and see if we could get in sooner. Well she couldn't and they suggested to take her to the ER. So off we went again. I hated thinking I would have to take her to the ER again...we had been there so much and I felt like no one would listen to me. This time we took her to Neenah which is about 30-45 minutes from us but are better equipped to handle Kylee and they listen to me. They did a chest x-ray and said she had pneumonia. They then looked at the x-ray's from the night before and said she had pneumonia then also. They said that it was hard to see on the 1st one because it was behind her heart but that it was there. Her WBC had also tripled from the night before. So off to the hospital we went again however she only had to stay for 1 night. They said they felt that by us getting her to the ER so quickly when the symptoms started she was able to get the antibiotic right away and that is probably what helped her. Then they also said they felt we went thru the wore part of the pneumonia at home. Well Kylee bounced back quickly and even went back to school on Monday. She is doing wonderful. You wouldn't even know that she had been so sick. So it was a long couple of weeks but just reminded me that I am Kylee's mom and I know when something is wrong and not to stop until I get help for her.
This week we head back to Milwaukee on Tuesday for a endocrinologist appointment. It should be interesting to see what they have to say and hopefully she don't pick anything up while she is there as last time we had her there that is when she started with the RSV.