Brown and Pink Polka Dots : Plan

I just talked to Jillian's ped. We came up with a plan...

1. Call pulmonology tomorrow and talk to them about increasing the oxygen, her doctor thinks she is needing more.

2. She is putting in a script for endocrine because of the overheating (Jillian's friend Caroline also gave her some cool new stuff to help with cooling!)

3. We talked about neuro since that would be a logical office to contact in this however Jillian's neuro left and we are not established with anyone else. She is seeing a neuromuscular doctor in July however we have not seen them yet. If things continue we are going to contact neuro to see if they can have one of the other doctors help us until then.

4. I am going to send a message to genetics. We need to schedule an appointment to have her exome sequencing read again (the plan is to do this yearly) and I still have not heard about the clinic for "this." I contacted them on 2/18... they said it could be 2-3 months... I have not bothered them since then. I feel like I have been very patient in this "triage" but we are almost at 3 months!

I feel better having a plan. I know there are no simple answers with Jillian (although sometimes I might pout when I don't get answers as quickly as I want...) but I feel better when we have a plan. No plan feels like we are just wondering around.

The dentist office at Children's also called me yesterday. Rehab put a referral in for that a month ago and told me it would probably take a few months to get in. Dental called yesterday and said they have an appointment for tomorrow! We decided that having a dental check up at Children's was probably the best and safest option for Jillian (I talked to other special needs mommas in the area). I am so nervous about her aspirating!!! I am trying not to worry about it, but anything involving anything going in her mouth worries me. When we do tests with GI at this point I know her GI dr knows Jillian's stuff and she works hard to keep Jillian safe in testing... but I don't know this dentist so it is the fear of the unknown. I know I wont let them do anything that is not safe for Jillian, but I'm still worried (I also don't feel like putting up with crap about the fact she cant have her teeth brushed with tooth paste and that she still uses a passy at 3) Its just one of those things were we need to just do it tomorrow.

Today Jilli and I went to zoo class (she has been signed up for this for months). Normally I bring the umbrella stroller with and she sits in that for center time but for carpet time she sits on the floor with the other kids, but today she told me she needed to stay in her stroller. She was right, she is needing help with core support. I am really proud of her for telling me what she needs! She still had fun, she just took zoo class at a slower pace.

After zoo class Jilli got to see her best friend Caroline! Caroline was in town for an appointment and they were staying at the Ronald McDonald House so we met them there and the girls got to play together in the play room (ps the Ronald McDonald House in Milwaukee is beautiful!) Jilli was so excited to see Caroline and the girls have a similar energy and stamina level so they make great friends to play together. Jilli tried to wear pretend Cinderella shoes... that did not work so well so we decided that Aurora's flats were a better choice. I am so thankful for Caroline and her mom being in our life!

Since we got home she has been resting watching a movie. Right now she is telling her baby doll all about zoo class. It is rather cute because she is reciting what the teacher did at circle time at zoo class.

Thank you for the kind messages that several people have sent about our current backslide. They mean so much!