We got a lot done though!
Lydia saw cardiology. I really like the new doctor. This is a different cardiologist then who Jilli sees but I think I am going to try to switch everything heart wise for both girls to this doctor because he was really good. He asked a lot of great questions and understood muscle issues. I felt like I wasn't just brushed off because my kids don't have a huge heart issue, he understood the importance of watching the heart in kids with muscle disorders. He listened to Lydia's heart and said there is a heart murmur there. He doesn't think it is likely a big deal or causing any issues, however he would like to check it to make sure. At chw echos for kids under 2yr must be sedated. With Lydia's muscle disorder and her need for oxygen, using a sedation makes everyone more nervous. The plan for now is to wait until she turns 2 in a couple of months and do it then (we have his first available appointment once she turns 2) but if anything changes with Lydia between now and then they will do it asap.
Both girls also had x-rays done. Rehab ordered hip and spine x-rays of Jilli and neuromuscular ordered leg x-rays of Lydia because of the curve in her legs. My friend Holly had been at an appointment with Nate and said she could come down and help with the girls during the x-rays. I figured they would do one kid at a time and then Holly could hang out with the opposite kid in the waiting room but they decided to do both kids art the same time so I took Lydia in and Holly took Jilli in. Lydia didn't like the x-ray but laid still. Holly said Jilli did great. She had to stand still for part of it which is really hard for Jilli because she has orthostatic intolerance and starts falling over if she has to stand still but Holly said she gave it her all even though it was really hard. Both tests came back good for the girls although I am a little perplexed because Lydia's results just saying she didn't have any broken bones, but thats not what we were looking for, we were looking for curvature of her bones.
Jilli also had her feeding tube changed. She did AMAZING! Thankfully IR is really good about getting us as soon as we check in and moving us out of the radiology waiting room quickly which I really appreciate during flu season. They brought us back to one of the pre-op rooms and asked all the questions and then said they would go check to see if the room was ready. They came back and said that the room was not ready because the case ahead of us was not going as planned and it would be a little longer. They came back a while later and said it would still be at least a half hour more and wanted to know if we wanted to wait. I gave Jilli the option and she said she was here and just wanted to get it done. We ended up waiting for an hour and a half from the time we left rmh until we got into the room. During that time Jilli watched her "hospital song" videos on youtube over and over and they helped to keep her calm. We got into IR and she said once she didn't love it but there was no tears. We cranked her hospital songs and had a dance party. She rocked it!
Yesterday Jilli had ENT to check her ear tubes. I felt bad for her med student because he came in to ask questions and the girls pumps kept erroring. They had to dig out some ear wax but she did amazing for that too, no tears, she sat still in her wheelchair and just let them dig in her ear. They said her ears look great!
We also had such a great time at RMH with all of the therapies, gardening and staff. I am so thankful for rmh! I am thankful for the people who pour into the girls and to us. I am thankful for the meals.
Last night on the way home from RMH we took a detour to see some very important people! On Wednesday my friend Jaime gave birth to a sweet little boy so last night we went to have pizza with them at the hospital and hold baby Oliver. He is so sweet. It was great to spend time with Jaime and Jason too! Jason helped Jilli hold Oliver and Lydia liked to touch his hat. Its adorable hearing the girls say Oliver. We are so excited to watch Oliver grow! We got home last night and Lydia was crying looking for baby Oliver, she was sad he didn't come home with us lol. (she was a little side eyeing him though when mommy and daddy held him)
Today I am working on unpacking and cleaning. I am not sure my cleaning is actually doing anything lol. I always feel so overwhelmed when all of our stuff comes into the house after being gone. We are having a calm day though. Jilli played playmobil for 2 hours. Lydia and I cuddled for a while watching a Disney vlog. Our weekend is busy so I am thankful for a calm day.
Also, Monday started Feeding Tube Awareness Week! This year for FTA we are collecting band aids for Childrens Hospital of Wisconsin! We have not made it to our goal yet. Please see my post about it for info on how to donate!
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