Brown and Pink Polka Dots : Appointment updates

We have had several appointments lately... here is what happened at each:

Jillian Dental: Jilli had a dental appointment at Children's for a teeth cleaning. For most kids the dentist is simple however for a child who aspirates on everything it is more tricky. The appointment was good. They said that if Jillian happens to get a cavity at some point we are not going to treat a minor cavity, we will only go after bad ones and she will have to have that done in surgery because of the aspiration risk. She said that she has a slight jaw shift and might need braces someday but we have a while. We talked about the passy and she agrees that for right now it is best for her reflux and helps to keep acid from destroying her teeth. She said that any damage from the passy to her teeth is already done so it really doesn't matter. She also said that with Jillian's muscle stuff she has a high likelihood of falling and causing facial trauma so she gave us instructions for what to do if that were to happen. They also put some floride on her teeth. The appointment went well and Jilli did a really good job.

Lydia PT Eval: Lydia was evaluated for physical therapy and since she is still not rolling or consistently sitting independently she qualifies. They said her rib cage is still in the infant shape instead of the shape for her age because she is not using all of her muscles like she should and that is causing some areas to get stiff. Lydia has started therapy on Monday mornings. Jilli has an hour of therapy and then Lydia has 45min.

GI: Both girls had a GI appointment. Lydia is still gaining weight faster then she should be so we are decreasing her calories by 10%. While I am grateful that she is gaining weight right now she is gaining too much and that is hindering her moving and the extra weight is hard on her stomach. Overall everything else with the girls from a GI standpoint is going to stay the same (we did a weight adjustment on a med). I realized after we left that I forgot to ask about adding salt to Jillian's formula to help with muscles so I sent a message and am waiting for a message back. Lydia has a weight check in a month, then an appointment in 3mo and then both girls have an appointment in 6mo.

Special Needs: We got to meet the special needs clinic this week. We went over all of the girl's history... it was a LONG appointment, but really good. Here is what they are going to help us with:
-See if they can make stuff with our supply company better. They said this is a complaint of many people and they don't find it acceptable the way things are going now. They are also going to see if they could get Jillian a portable oxygen concentrator which would mean we wouldn't have to spend every Wednesday at home waiting on Oxygen. Portable oxygen consentrators don't do 3/4lpm but we talked about how her oxygen doesn't always stay at 100 while walking now so if we have to go to 1lmp I don't see that as a step backwards, maybe it would help her more.
-Check to see if Lydia's lactic acid level needs to be re-done
-Stay on genetics. They are not happy that our exome sequencing is not done yet so they are going to bug genetics. They said they will make sure that we get an appointment to go over results this time and not just a letter in the mail
-Check into seeing if the girls can be checked for disautonomia because they both over heat and sweat more then they should.
-Check into what is going on about the RSV shot for Lydia since no one has made a choice yet if we should be doing that or not especially with Jillian's vaccine history
We are going to follow up with them again in 2 months. They also call us monthly to check in to make sure they everything is going smooth and to see what way they can help us. Anytime the girls are in the hospital they round on the girls as will and help to make sure that the girls are seen as a whole instead of segmented by body systems. I am so excited to be in this program! If we are having issues getting doctors to get back to us they will help with that as well. They were super nice! I am so grateful that my friend Holly told us about all they do and that the program accepted us! I think this is really going to help!

We also stayed at Ronald McDonald House this week with all the appointments. Jillian's best friend Caroline was also staying at rmh. The two girls has been begging for a sleep over but we live in opposite parts of the state and sleep overs with all of their medical stuff is hard. So when Stacy and I realized that we were going to be at rmh together we decided this was our perfect opportunity to make the girls' dream come true. When I called rmh to put us on the waiting list I asked if they could put a note that we would love to have rooms close to each other. When we checked in we asked again and they said they would see what they could do and they were able to get us adjoining rooms! The girls were SO excited. They got play time together and watch a movie before bed. They had such a good time! It was amazing for both of them. It was great too because I got to spend time with Stacy. Our friends Holly, Nate and Krik were there as well and we got to spend a good amount of time with them too and played board games together. The appointments this week were long and mentally draining but time with friends helped to recharge me heart. There is just something about having others who get it and being able to spend time with other families who speak medical too. The people at rmh have become family to us and we are SO grateful for all of the staff and volunteers there.
Last night we had dinner with Jaime and Jason. We played Code Names Pictures together and the kids played. It was a fun relaxing night. Today is a down day of getting stuff put away and resting. Jilli is making art with dried pasta and Lydia is sleeping on my lap. Its a comfy clothes kind of day.