We Are Home

We Are Home

So on Friday we had an episode with Kylee as I stated below. Her blood pressure was 150/100 and she was just no acting her self. We decided to take her to the ER in New London (which we usually skip and go to Neenah) and when we go there she was 150/98. At this time she was sleeping. She slept for a while and when she woke up she was acting just like her regular self and her blood pressure was back to normal. Strangest thing ever. Our cardiologist decided to have us sent to Milwaukee so that they could monitor her for a while. We went to Milwaukee and she never had another episode. At this point no one really knows what happened to her. They are thinking she may have had a dysautonomia episode which was a diagnosis we had talked about this past winter but never have gotten a "formal diagnosis". It is mainly were her body doesn't respond to things the same as someone else. She does not produce tears and never sweets amongst other things. So for now we are chalking it up to that and just have to wait and see. Kylee always keeps us on our toes.

Just wanted to note that we got to stay in the "new" part of Children's and man was it nice. You no longer have to share a room with anyone. The rooms are huge including the bathroom. There is a little separate section for parents that has a TV, desk, double pull out sofa and then you just pull the curtain to separate yourself from Kylee's area. The Kylee's area is huge and also has it's own TV, desk, sitting area, nursing area, shelving and a safe. It is hard to explain but all I can say is it is huge and very very nice.

Week Ahead

So we just got home today from Milwaukee and have to head back down on Thursday for our neurology appointment. Kylee also has speech this week. Family reunion on Saturday and then hopefully a little "me time" on Saturday night with a good friend, good drinks and music.

Once again THANK YOU to everyone for all your help while we were gone and for all the prayers.