Shriners MDA clinic and a really cool park

We have been home from rmh for a few days but I feel like the physical effects of the past few weeks are hitting today. I am sitting in bed with a blanket round me, trying to stay awake at 7:30pm and my stomach doesn't feel great. I am a person who in the moment just does. I can make the hard decisions in the moment. Its rare that I cry in the hospital. I did cry briefly once Lydia got out of the hospital and I was walking the bridge over with her while Jilli was still in the hospital... I looked down at Lydia's leg and the bridge was empty except for us and I stood there and cried for a while... I felt like crying the day before but there were other people on the bridge. My body holds it all in until we get home. Which has its advantages and disadvantages... in the hospital I am able to have clear conversations with doctors and do all the things that need to get done... I can make choices about surgeries and options and be able to make them with a clear head... but that means my physically feel like crap once I get home, but once I get home I need to unpack, and clean, and empty the fridge, and remind the 2yr old of what the rules are at home. I feel so stressed looking at all of the bags of stuff. We are also in the midst of a bathroom remodel which means time that would normally go to keeping other parts of the house up are going to that... it is what it is but I would currently hate for someone to come over to the mess. My body held out til today though because we had an appointment yesterday as well.

Yesterday we met with the MDA clinic at Shriners. We have gone to Shriners for a while for the girls' leg braces but we have always been seen in the orthopedic clinic, however that clinic suggested that we move to the MDA clinic because it would meet the girls needs better. I don't think I was completely mentally prepared for this appointment... I knew we were meeting a new team (cue me feeling the need to dress professionally to make a good first impression) but I didn't get how many people would be in and out of that room.

First we got the girls vital in the hall so we had to take their braces off. Then we went to the room and a dietitian came in and asked us about what the kids are fed and thankfully I printed off our "taking care of" sheets which has everything listed on it (I wrote about these sheets HERE). She said that since we follow GI so closely that she doesn't feel the need to change anything which is good. We have a good feeding plan right now and rocking the boat is not wise. Then a rehab doctor came in and we talked about equipment and needs. We talked about how the Smart Drive doesn't work as well as anyone had hoped. We really wished that was a better solution for Jilli but it has so many issues. An NP from ortho came in and we talked and then some med students came in and then OT and PT came in and then the ortho doc came in and wanted to see each of the girls walk. It was crazy and at times there was so many people in the room I didn't know who I was suppose to be paying attention to. We spent a good 2 hours with people just coming in and out. Then we sat for over 45min and I poked my head out to ask if we were good to go and they said the main doctor had not been in to see us yet.
The neuro came in to meet with us. This is where I was so frustrated that I couldn't find my medical binder before we left the house (as we were at Shriners I remembered it was with all of the NIH stuff) because he wanted to know the results of everything and they do not run the same medical program as chw so they can not see stuff from the other hospital. He wanted to know everything, from pregnancy to birth to all sorts of things about the girls. We spent well over an hour with him. My brain was mush by the time we were done talking. We talked about the gene he and some colleagues discovered that is close to what is going on with the girls but not the same. He is really interested in the girls and wants to join the journey. We see this clinic again in 4 months and at that time we are bringing some of the lab work and MRI scans with us. Everyone is hopeful that maybe the full genome sequencing that NIH will do might bring some more answers. He was really fascinated by Jilli's crashes and you could tell it really got his gears turning. 

I was expecting this appointment to be around 2 hours but instead we were there from 1-5:30! We had planned an adventure for the journey home so we headed off on that. Select Target stores use to sell the American Girl Wellie Wishers and are now clearancing them out. Jilli got a Wellie Wisher when she was in the hospital because my mom had Kohls Cash (Kohls has them too) so we hit up the only Target in that part of IL that sells them to hit up their clearance. Jilli was excited to find pajamas for her doll!

Then we headed to a really cool park in Huntley. It looks like a little community with little buildings and a fire truck and school. There is also a music section... Jilli's favorite part... a wheelchair slide! It is basically a two way ramp with concrete up the one side and the soft playground material on the other. Jilli has been saying for a long time that she wanted to go to a park with a wheelchair slide but none of them that we have been to have had something she considers a wheelchair slide... she just kept saying this was the best park ever and it was the best day. She LOVED this park! It was SO cool! I am so thankful for communities that have parks like this that everyone can play at.

We did get a few mosquito bites at the park though and Jilli work up before 6am crying that they itched... and she didn't go back to sleep and woke Lydia up (who feel asleep yesterday once we left Shriners so she didn't go to bed until around midnight). I was not ready to get up when they did!

This morning we needed to run to Target to pick up a med. I forgot my phone at the check out and left and then realized it so we went back to Target and they had all the carts inside so I ended up carrying a child on each hip and an oxygen tank, a concentrator and two pumps into Target... this is why we have a disabled parking pass... my arms were dead once we made it in the door! Thankfully they had my phone.

Lydia has had a very two day... she learned the word mine... She has had a few epic melt downs today too. I worked on bills and taking care of some things. I got a little unpacking done but still more to go especially since we head back to RMH very soon. We will be bouncing back and forth for a bit here.

I still have not heard anymore from NIH. Pray for communication there and for calmness from me and it all feels overwhelming right now but I know it is a good overwhelming. Also pray about a supply issue we are having with a medical supply... its a mess that I have been fighting for months and I am getting very frustrated and worn by it and am starting to have to get my stronger advocate voice out which I don't like doing especially with someone who has been very intimidating in the past and has tried to use their authority as a threat. I am not just working for us in this situation but also for other kiddos we know and it is really weighing on me today and I feel very frustrated.

Time to go cuddle with the little girl next to me who is reading a Playmobil catalog and get some rest!