Brown and Pink Polka Dots : Time at CHW/RMH

So we are back from vacation and at our second home lol. Thankfully this was a planned trip.

Monday mid day we headed up and check into RMH. Nate's family is still here and Caroline and here parents also checked in on Monday. They got us and Caroline's families rooms next door. We all hung out together in the afternoon and the kids all went to the magic room together. Northerwestern Mutual had Qdoba catered in to the house for everyone for dinner. After dinner the moms left the kids with the dad and we went out to Cheesecake Factory. Someone had heard us talking about going and left an anonymous gift card for us to go out which was super sweet. I had also been given a gift card for Cheesecake from a super sweet person we know so we were able to use the two gift cards and go out and relax which was amazing just to sit with friends and laugh and talk. It also helps our kids when we hang out because the three of us bounce ideas off of each other for medical things and brainstorm ideas to help each others kids which is so helpful to everyone. When we got back my kids were still awake so I helped Brent to get them to sleep and then headed to bed myself.

Tuesday we started with dental for Jillian. She said her teeth look amazing. She still thinks that the passy being used to help with reflux is better for her teeth then having more acid touch them (we can straighten teeth with braces but cant fix the issues acid cause) Jilli did great at the dentist. A week of so ago I noticed Lydia's front tooth was a little discolored and had a line on it. When Lydia gets mad she slams her head into things so I am not even sure when this happened. I asked the dentist to look at it while we were there. She said there is a really small chip in the tooth but doing anything to the tooth would be worse then just leaving it be. She had us make an appointment for Lydia too in 6mo so the girls will now both see the same dentist which is good because I really like her and being at CHW she understands medical better then many other dentists. In the afternoon we had an appointment with Jilli's rehab dr. This is the dr who wrote the script for the wheelchair. I told her Jilli was denied and she was shocked. She said she spends a lot of her time fighting with insurance companies for equipment for kids and this was not one she thought we were going to have to fight for because it is such an open and shut case for why she needs one. I also explained to her all of the frustrations we have had with the wheelchair company. She wrote an appeals letter for me to send in and she is going to call today to do the peer to peer conference with a dr from the insurance company. Hopefully that helps us to make a step in the right direction. I need to ask more of our dr for letters as well so I can send them as many letters as possible to explain why she needs this. I am grateful for her help in this. Tuesday evening Jaime and Jason joined us for dinner at RMH and for art time.

Wednesday morning we had GI. After some good conversation we came up with a plan for both girls:

Jilli: we are going to add 8oz more of fluid to her diet since she sweats so much and has temp regulating issues. We are also adding salt to her formula. Salt helps with dysautonomia and we have been debating for months between different dr about adding salt and her GI dr said its time to stop talking about it and actually do something (thank you!) so we are adding salt to her bag for formula twice a day at times when she only has about an hour left of milk in the bag. Her formula mixture is staying the same (she gets formula from 10pm-6pm) and then from 6pm-10pm we will run plain water. Otherwise everything else for Jilli is staying the same. She is at 31 pounds and 37inches.

Lydia: With the extra vomiting and GI bleed she was a bit more of discussion. Instead of vomiting Lydia has figured out how to bend over just right to send the vomit flying out of her g. We are upping one of her reflux meds to twice a day (so doubling her dose) and if that doesn't take care of it we are adding erytho. If the bleed continues we are going to have to send her in for an EGD. We talked about how the weird smell of her drainage went away when we switched her from an Mic Key to an AMT tube. We are also getting her reflux med filled every 14 days now because sometimes the compound can start to loose its strength after 14 days and typically it is such a small loss the most kids don't notice but maybe Lydia's body does (both of her GI bleeds have been towards the end of the bottle of med) We are changing Lydia's formula recipe slightly (a 2% cal increase). Lydia has grown in height but actually lost a little weight since last time but she is following exactly in her sisters footsteps for her growth pattern. Because she is loosing so much out her g right now we are going to run pedalyte from 6pm to 10pm (ie both of our kids have just gone back to being hooked up to their pumps 24/7)

Wednesday night Brent had a thing for work so the girls and I went for dinner with Nate's family and then came back for movie night at rmh

Thursday morning Jilli had labs to check her Coq10 levels. The lab just got a new computer system so there were issues with the orders but once that got figured out we headed into the room. Jilli did great. She watched her Brave video and sat in the chair all by herself. She was excited that she got a Lamby band-aid. In the afternoon Jilli had PT. Her oxygen and heart rate levels were not great but she worked hard.

Today we have a down day and tomorrow a donor from RMH is sending us, Caroline's family and Nate's family to a Brewers game!!! Monday Jilli has ENT and then we will head back home. It has been a busy week here but a productive week!