Reagan woke up around 2am this morning and she’s been up ever since. Super vocal and a little kooky at times, but happy. We had a new nurse orienting today and that went really well. We’ve been needing additional nursing for a long time now as we’ve had open shifts not getting filled, but we also now have our dear Megan who has been with us for 3yrs leaving us in the fall (to have a baby)!! We are going to miss her and we’re just really trying to stay on top of the nursing agency to make sure they find new nurses before Megan decides to stop working. Reagan had PT and OT today and did well with both. During OT we had the DME rep come out and spoke with her about a new wheelchair (she’s at the end of the growth of her current one) and a new carseat and bath chair. We haven’t been using an actual carseat in the car since they are all just too bulky to fit in our current car situation and the one we have does not provide enough support for her. We’re going to try to get a new car in the fall that has captain’s chairs, so we’re hoping that will help a lot in making everyone a little more comfortable. We’re looking at the Ricaro Monza car seat that swivels. That would really help us when trying to get her into the car (until we pursue the transfer seat we would love to have installed). We can also tilt the carseat with a wedge so that she can recline a little and it comes with a neat foam table that would really help in her positioning. Reagan has been good all day but still very kicky and into her hand. I'm hoping she's going to settle down and get some good sleep tonight, but it's not looking good.
Tuesday, June 21, 2016
Monday, June 20, 2016
Not sure how well my girl slept last night. Apparently I forgot to switch over her monitor from the therapy room over to her bedroom, so I never heard when she actually woke up. What I do know is that Mike went in to check on her at 6:45am and found her wide awake and super vocal! And super happy! She’s had a really good day today. She had speech this morning and OT this afternoon and she did awesome with both! She’s been really sweet and adorable today. I’ve noticed a little congestion tonight, seemingly out of no where, but hopefully that will clear up. I got in some great snuggles before bedtime and she’s snoozing as we speak, so hopefully that means she’ll have a good night sleep tonight!
Sunday, June 19, 2016
Reagan woke up around 2am last night, a little moany, but not too bad. I moved her to her chair and went back to sleep. I think she went back to sleep too and when she woke up, her mood was much improved. Today was a much better day for my girl. We had a nurse today so we were able to keep her upstairs and keep things low key. She wasn't super happy, but she was calm. I'll take it. This morning Mike and my Dad went to play some Father's day golf and I hung out with the kids. Then this afternoon we went with my Dad and my stepmother to lunch/dinner. Ryan was a turkey, he kept climbing all over the booth! Reagan was great tonight...she definitely seems to be heading the right direction! So glad she's feeling better!
Saturday, June 18, 2016
Soooooo...Mike was right. Reagan woke up this morning crying and it has NOT been a good day for my girl! Thankfully she has been able to sleep a lot. I wasn't sure about leaving but I had a palliative care parents forum to go to (to help share our experiences and give them ideas of where they need improvement) and she was sleeping, so I decided to make a run for it. Of course she did wake up while I was gone, but a little pain medicine and she was back out. She was awake and asleep off and on today until she finally dozed off for good tonight. Mike was able to successfully move her to her bed. Praying she can sleep this off and wake up feeling better in the morning!
Friday, June 17, 2016
Reagan woke up this morning super loose and sweet again. She's had a very laid back and calm sort of day. No therapies today. Just taking it easy. She's been super adorable and relaxed today. Tonight I did notice a little bit of sensitivity when we would talk though. And a little kooky laughy at times. Mike still thinks she might be headed downhill, I'm really hoping not. More into her hand tonight and wiping at that nose. I snapped a few pics of my girl tonight before bedtime...so cute in her butterfly pjs!
Thursday, June 16, 2016
Reagan slept well last night and woke up this morning a sweet girl. She's been very loosey goosey today. Very still and calm. Pretty precious. She had an early session of PT this morning. She apparently everything loosened up a bit because once in her stander, she decided to have a big poo! Thankfully we were able to salvage her outfit! After PT, we headed to Dell for a GI appt. It's been almost a year since we've seen GI. Thankfully things have been going well, we haven't really had any urgent need to consult with them. We did discuss the ongoing constipation issues and he suggested maybe trying administration of an enema every other day. We'll see. First we have to find a pharmacy that actually carries it! We also discussed increasing her rate up to 80mls/hr (she currently gets 70ml/hr) and possibly taking her off nexium at some point because of all of the negative side effects. Again, we'll see. It'll probably be a while before we try our hand at either of those things. After her doctors appt, we came home and she had OT. She was a good girl for that as well. I wish I could say the same for her brother. After a not so good week at camp, they called me today to actually come get him (and he won't be going back tomorrow). Just too many kids and too few/inexperienced people watching them. Not happy. Reagan was super loosey goosey and snuggly tonight. Mike thinks that means she might be headed toward bad days...I told him to bite his tongue!
Wednesday, June 15, 2016
Reagan slept in this morning waking up right around 9:30am...just in time for speech. She was a bit serious and had just woken up, so it wasn't the most productive session, but she tolerated it. She fell asleep shortly thereafter and then continued to sleep nearly the entire day again! She woke up at 4:30pm and she was good. Totally cool and calm. We gave her a bath and she stayed awake! She was super sweet and even a little vocal. Really hoping this means she's skipped over the bad day and she's going to give us some good days now! She kept yawning and quickly fell asleep as soon as I picked her up (9:30pm). Both kids asleep and in bed by 10...soooooo nice!