Tuesday, June 10, 2014

So calm

Sorry about the super late post today (I've got to start getting to bed before midnight)! Reagan slept well last night and woke up super sweet and calm as a cucumber today. This morning we ran to the lab early to get some blood drawn for the EPI-743 study and for her endocrinologist. Reagan was perfect and the phlebotomist was great (which is good because they needed a lot of blood)! After we got back she had PT and did great with that. Then this afternoon her OT and the wheelchair guy came out and made a lot of adjustments to her wheelchair. Apparently my girl is growing...and so must her wheelchair. She was SO good for the entire process! All of the talking, getting her in and out of her chair twice, and making lots of adjustments while she was in it...she was such a trooper! They are going to "grow" her current wheelchair (which is only 2yrs old), which consists of ordering a new seating system, a new padded tray, as well as something to widen her frame. So far she has only been growing length wise, but eventually she'll need that extra width. We also discussed the need for a therapy/changing table and he mentioned the difficulty in getting those approved. Because insurance doesn't care about the caregiver's backs! The problem is, the heavier she gets, the more likelihood that someone will eventually drop her (scary)!! We're going to try our best to get one. We'll see how it goes. Despite giving Reagan a bath this afternoon, tonight I could smell "bad day smell" on her. Her temperature regulation is a bit off too (slightly sweaty back and cold hands and feet). Her last bad day was only 6 days ago, so it's way too soon to be headed in that direction. Please keep it in your prayers that she'll continue having good days.



Ryan playing in her "little room". He loves this thing!

5 comments:

Clarissa said...

Is that picture her "wheel chair"..?? it looks so comfy! we have been avoiding "wheel chairs" for Abi because the one we got when she was 2 was so bad uncomfortable for her and we couldn't get her to stay in it at all!
also, how often do you need to travel for the epi study? as of now, we have to go to Seattle every 3 months for blood draws and check up... I would love if we could do blood work locally and stop traveling so far!
Praying that Reagan is blessed with more good days, or that her bad days are less severe this time around!!

Jamie said...

Noisy Box we used to call that contraption! I LOVED that toy..madie loved it more! :) Trying to catch up on your blog..tricky! Reagan looks great too hope she has some good days ahead and smiles :) Madie has the same chair in Purple we love it..its still pretty heavy lol I was going to ask how you clean it? Like when icky stuff gets on it..or when Madie tinkles thru her pants! Bleck. Ready to take the hose to the dang thing LOL

Reagan Leigh said...

No, in the picture she's in her Convaid Cruiser (it's a folding "lightweight" less supportive wheelchair). We have a much heavier tilt in space Freedom Designs NXT wheelchair that we use primarily in the home (for school, OT, & speech). The positioning is certainly optimal in the NXT, but she won't tolerate it at all if she's not feeling well. The Cruiser we use for all of our doctors appts and going shopping, etc...

Reagan Leigh said...

Yes, it is still pretty bulky/heavy but I haven't found a better option! As far as keeping the chair clean, Reagan is tube fed so we haven't had any issues with her getting anything on it (like food/drink), but when we're worried that she might leak thru her diaper, we just put a pad under her. So far so good! (Knock on wood!)

Clarissa said...

I see, we use and love the special tomato jogger stroller so far... and it does have a removeable/washable liner on the seat, but so far we haven't had to remove/wash it so I'm not sure how easy it is to do. The wheelchair Reagan has sounds a lot like the one Abigail got at age 2 and has obviously outgrown, but we have it in storgage now waiting for the day we decide to try and get another wheelchair through insurance since they said we have to show it to them to prove she did outgrow it.. we have held off on a new wheelchair, but we should go ahead since it has been 5 years... and on really "good days" Abigail might tolerate it better.. but I know she would rather be in a relaxed stroller position for outings. We had her see PT/OT at the hospital last week since when we were inpatient they wanted us to do it and it was the perfect time to go for it since we had the referrals, etc. We don't want to do outpatient thereapy at the hospital since we can't bring her in every week like they want, but they said we can bring her once a month or even less often and get a home therapy plan for us to do at home (just stretches so far), but I do wish we could get some in home therapy once a week even. Anyway, my pointr of all of this.. is that the PT/OT said that we can "use" them to get chairs, etc through insurance even if we only see them once a month... so that opens up new possibilities for us. :) The therapists were shocked that we had bought her tomato chair and stroller out of pocket, but hey, we had a tax refund to spend and didn't want to hassle with insurance.. :p ... sorry, I'm writing so much.. lol