No More Blue Spells

Blue Spells

We took Kylee to the cardiologist on Wednesday and was told her heart look wonderful. She said things look better and better every time we come in. She said we have to come back in 6 months for a follow up because she is on the hypertension medicine but we didn't need to have another echo done for a whole year. That was good news but it didn't explain why she was having the blue spells. So as we have found out from some other parents on the 1P36 support group it is just something that happens. As long as she doesn't have difficulty breathing and her oxygen level is normal we are not to worry about it. They figure it is either poor circulation in which they told us to just keep more clothes on her and rub her arms and legs or it could have been that she was in a dysautonomia crisis. I am leaning towards the dysautonomia crisis. Kylee has not been formally diagnosed with it but just matches the symptoms to a tee. She has been in this
"funk" during these blue spells. Just unhappy and crying and then all of a sudden she was out of it and was the happiest little girl you have ever seen and let me tell you I am loving it. So heart looks great...no more blue spells and my happy girl is back. I'll take it.

After School Moments

My favorite part of the day is when Kylee comes home from school. This is always mom and Kylee time. I read her book on what she did in school that day and then we sit on the sofa and Kylee fills me in on everything. She sits there and smiles from ear to ear and just babbles away about her day. However you can always tell when it is therapy day because those days she is not so happy. She is doing really well with school and is starting to reach out for objects and play with toys. She got her first report card and she did pretty good. She was a E (meaning she can do it most of the time but not consistently) on everything except for she met her goal of being able to hold onto a toy and transfer to the other hand 3/4 tries. I am going to go sit in on therapy on Monday just to see what they are all doing with her and see what we can carry over at home and/or if there are anythings we can improve on at school. Should be a fun day...plus then I get to see all of Kylee's friends and for a few moments feel like I am a part of her school life.

GI

Next Friday we go see GI. Knock on wood things have been going good in that area. I am going to see if I can get orders to start feeding her back in her stomach so that our nurses can do it also. She has been doing great with it. Her #2 diapers have also gotten much better for most of the month. When she is on the medicine for the 7 days it is horrible. One day last week we had 10 diapers and they go everywhere. Once she is done with the 10 days she goes once a day. With that being said I think she did have an overgrowth of bacteria in her small intestine so I think she will be staying on the medicine for a while. What they usually do is put you on it for 6 months then bring you off until the symptoms come back and then put you on for another 6 months. As long as the c-diff stays away I will be happy.