On Wednesday morning I got the letter from our doctor for our NIH application so I attached that to our application and electronically submitted it. That afternoon I got a call from NIH that instead of submitting an application for both Lydia and Jillian that I just needed to submit one so they needed me to retract one. He said that he had assigned me to Boston Children's to do the intake info and I asked him if we could be switched to NIH itself. For the program we are applying to there is a network of hospitals that work together and you can be assigned to one of the multiple sites. We want to go to NIH directly. First off, you can only been seen at NIH through a program like this, I can go to one of the other hospitals for a second opinion a lot easier then getting into NIH. Second, our special needs doctor has a friend at NIH who has already expressed interest in helping us. Third, Boston makes me nervous, there is a case from a few years ago of some very unethical things that happened there. He said that we could switch which I was very grateful for. Later in the afternoon I got an email from the coordinator at NIH with the next round. We have paperwork to fill out (a 36 page questionnaire!) and info of everything we need to get together. We need paper copies of ALL medical records for both kids! We also need a CD of all imaging. I have spent the last two days working on contacting people at the 4 hospital systems we need records from. I have a feeling all of these records might be a little expensive to send, because over 2yr ago we had just one of our hospitals send us Jilli's records and it filled a medium flat rate box (and it was missing tons of stuff). I am also working on some paperwork for Shriners for Jilli to try to get her an adaptive bike and waver stuff so we can start respite... I joked with one of my friends this morning that if they find me curled up in a corner with a pen in hand no longer making sense to bring coffee because I have hours of paperwork to fill out right now. *Note we are NOT accepted into NIH yet, this is just the next step in the application process. Once we get them all of the records and forms they want filled out then it will take about 8 weeks for them to go through everything and decided if we move to the next round or not*
Wednesday Jilli also decided to make things more interesting. This weekend Jilli was at my parents and they have some particle board against the wall and as my dad told her not to touch it she rubbed her hand against it and got a splinter. By the next day you could barely see that she had anything happen and it looked that way until Wednesday... when suddenly it became a hard discolored puss filled lump on her hand with a red ring around it. I ended up taking her to the walk in at chw because our local walk in is very hesitant to touch either of our girls so it is just easier at this point to go to chw. They looked at it and decided it was infected and needed to be drained. They put numbing gel on it and then came in and cut it open and drained it and took swabs. They put antibiotics on it and wrapped her hand. She was AMAZING while her hand was being drained! She told them at one point that she didn't like that they had to do this but she didn't cry or pull her hand away. You could tell it didn't feel great but she used her coping skills. At first she said she didn't want her hospital songs but I told her Lydia looked nervous (she did, she knew something was happening to her sister) so we would play them for Lydia, but I could tell Jilli appreciated it too and it kept her distracted. We also looked at the Playmobil catalog a lot in the walk in. We got our hands on one of the 2018 ones and we spent at least 2 hours in the walk in looking at it. We are doing twice a day dressing changes and topical antibiotics and thankfully it is looking really good!
Yesterday both girls had appointments at Shriners. Thankfully my brother was able to come with and help. Both girls grew out of their braces so we got them casted for new braces. Jilli picked out pink bug/flower ones and Lydia picked out a hearts pattern. They both did really well with the casting. We go back in 4 weeks to pick them up. They are also going to move us clinics at Shriners to the muscle dystrophy clinic instead of the general orthro clinic. In the new clinic they have a team of doctors that work together as a collaboration with the University of Chicago. We will be seen in that clinic in July.
We also bought our new couch this weekend. If you remember my last post, our old couch was giving me tons of back issues so we spent Saturday couch shopping and it was delivered on Wednesday morning.
We also got friend time this week. Tuesday night Jaime and Jason came over. I love nights when they are here! Lydia LOVES playing with Emerson and asks about Emerson every day! Wednesday we also saw our friends Holly, Kirk, Nate, Stacy and Caroline. We all had stuff to give to each other so it worked best to just meet for an early dinner before the walk in opened (chw walk in does not open until 5pm and we had therapy part way there until 2:15 so we all just got together during the time inbetween). So we had a yummy dinner of Bel Air (I got the yummy RMH taco! I love their tacos so much!) and the kids got to play! I am grateful for time with friends in the midst of crazy!
Today we are having a calm day to work on paperwork, work on cleaning and organizing after changing up our living room and to let the kids rest after several busy days in a row (I also had a dentist appointment on Tuesday).
No comments:
Post a Comment