We got home mid afternoon Saturday after stopping for coffee and french fries :) My mom came up and helped us get everything back since we had gotten a med supply delivery up there, had Jilli's walker, wheelchair and special chair, stroller and a weeks worth of stuff.
We got home and started working on getting things put away. We cleaned out the fridge. For some reason that is always when everything hits me, when I see the milk that has gone bad or something else along those lines.
One of my mom's coworkers gave her a pan of KFC chicken so we had that for dinner.
Sunday Brent went to church and then grocery shopping. I stayed home with the kids and worked on helping Jilli stand and she walked to her play area and played playmobil for a while. Once he got home I took a nap. It has been months since I took a nap but I didn't have much of a choice, my body was exhausted! Sunday Jilli spent a good amount of time playing iPad and such but by today iPads are back up and we are working on things to get her stronger.
Last night when I went up to bed I could really hear Jilli's stridor. There has been some question for a while if she still had one and last night was the answer. I was laying there thinking how it had been a while since we had heard it at night, probably about a year and then I remembered that we haven't really heard it since she went on night time oxygen so I went over and checked her oxygen line and there was a crack in it. She was still getting some oxygen but not enough to keep the stridor at bay. I fixed the tubing and the extra noise went away.
Today we have been working on cleaning the house and putting things away.
Jilli had school this morning. I did things without cutting since writing is work right now but with help she finished all the work I had planned for her. She also played in her play area for a while and now is playing playdough. We are working on standing and walking but she is rocking pushing herself and then resting for a little while. This is one of those areas where I think myself having muscle and connective tissue issues help, I see how important it is to work on moving. Growing up I would whine and complain about having to get back to school and such after a bad asthma attack but I see now that I am so grateful that my parents carefully pushed me, they let me have breaks but they set expectations and for that I am grateful because I don't use my health stuff as an excuse, my body hurts most days but I work with my body to do what I can. Jilli is back to putting her shirt on by herself and just needs help standing to put her pants on. We are still doing lay down diapers but by goal is by the end of the week is to have her back to changing her pee diapers and have her in stand up diapers. She grumbles about some of it, but I am proud of how hard she is working. Our plan is to keep PT at once a week right now and to save going up until a bigger crash. We are still keeping her pulse ox on for another day or too (def for therapy wed) but hope to be off that during the day soon.
I also spoke with our special needs team this morning. We talked about some of the things we will do differently next time (taper the steroids!) and made sure her med list is good after the hospital say (it frequently gets messy after a stay).
Lydia is happy to be back home although she misses Laura (one of the managers at RMH). She is the hurricane through the living room (she didn't get the cleaning memo apparently lol) and is loving playing with all her toys (and trying hard to get back into the crayons... what is it with this kid and trying to eat crayons all the time!?).
March is apparently going to be the month of paperwork! While we were gone Lydia's Katie Beckett paperwork came in the mail. I just got a call that Jilli reached the top of the Long Term Support Waver wait list (we have been waiting since she was 18mo) so they are sending me the paperwork for that and someone is coming to our house in a few weeks for that meeting. All the fist round of paperwork is done for Lydia for NIH, I just need to finish Lydia's and then get the letter from the doctor, once that is accepted they will likely send more paperwork. If by the end of March my hand is cramping and my brain looks fried its paperwork overload lol!
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| Saturday at RMH |
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