Another busy day.
Addyson had two Drs appointments today and home hospital teaching. We also decided that today would be the tree drive drop off date and lunch with a friend!
First appointment was with one of addysons autonomic dysfunction Drs. She agreed we are on the right path and have already tried all the “normal” Therapies for autonomic dysfunction. She agreed addysons case is complex due to the gi Dysmotility, so that makes things a little more difficult. She offered another med suggestion (however we are still thinking it over). I kinda want to wait till we get another look at her aortic root dilation. She also gave us some things to ask the neurologist about.
Dr crews happened to call today, which was perfect. He called in between appointments. We touched base on how he’s doing with the drops he prescribed addyson. Big win for him!!! He got FDA approval!!! We are so proud of him. This Dr is amazing, he loves addyson (and all his patients). He truly cares. He was so worried about her aortic root dilation. He said if she needs open heart surgery he is gonna be on pins and needles waiting for updates. I told him we will be a wreck. He said he commends us for all we are doing for our daughter.
Then off to lunch we went. Addyson got to see Savannah and I got to catch up with Amy! I needed it.
After that we headed to Hopkins to drop off the two truck loads of tree drive items!! You all are amazing. The Hopkins kids are going to be so excited tomorrow!
We just can’t thank you all enough for all the items. While it might seem small these crafts, blankets, toys and trees make the kids feel included, special and boost their moods. Addyson has been inpatient so much and a blanket can turn the day around. It’s something so small but yet so big when your living in the hospital. Things as simple as the note pads and pens provided are needed when your rushed to the er about ambo and your phone has died. I remember being in the er after addysons first seizure. No pen no paper… Trying to remember it all as the Drs spit things out to you. I’m grateful we provided those so another parent can take notes. The child life specialist today was so very thankful for everything and so are we!
After Hopkins we went back to kki for our last appointment of addysons for the day. This appointment was with her pain mgmt Dr. He walked in and could tell she was done and needed a minute so he joined her where she was. He took a few minutes and discussed the game she was playing. After a few minutes she had decompressed some and he started the appointment and all went as expected. He will stay on our care team!
Now home for dinner and to get ethen to karate!
Next week back to chop for appointment w Neuro Gastroenterologist!!