Thursday, August 21, 2014
Reagan woke up last night around 2am and was rolling into the side of her bed over and over again. I decided to go ahead and give her her nighttime dose of clonidine and thankfully that seemed to help her fall back asleep! She would vocalize off and on but every time I'd look at the monitor, her eyes were still closed and she was asleep! She woke for good around 7:30am and I found her in a SOAKED diaper, so that might explain some of her restlessness! She was sweet and giving me an occasional smile, but I could tell she was tense. Still very crunchy and more sensitive than yesterday. We definitely think her tummy is giving her trouble! As of yesterday she was dirty-diaper-free for 5 days, so I helped her go then and also this morning...we definitely think there is some cramping going on! Poor girl! This new formula is doing a number on her bowels (much harder)! I spoke with her GI doc today (who's been out for 2 weeks), and he thinks we should try increasing her milk of magnesia even more to try to get her going again! So that's the plan. We also spoke about possibly increasing the rate of her formula, in order to get her more calories (very slowly just a cc a day), but I'm still slightly hesitant to make any changes right now. I don't know. We've got a crazy busy week next week, and I'm so afraid to do anything that might rock the boat! We'll see. Next week she has 4 appts over 5 days AND another care conference with all of her doctors! I honestly have no idea what to expect right now out of her (good day/bad day wise)...she hasn't been following the 11 day cycle for a while now. This afternoon (after PT and OT), the seating guy came to add the new cushions to her wheelchair! She's growing and needed more space, there are still a few adjustments to be made, but there are a couple more things they have to order first! Her bed also needs a new motor for the bottom half (it's making a terrible noise), so they'll have to do that as well! Tonight Reagan was a little more sensitive again, but seemed slightly better after a dose of oxycodone and Ibuprofen. When it was time for bed, clonidine definitely seemed to aggravate her, but I held on to her tightly (she is ridiculously strong) and she eventually settled down and fell asleep. Unfortunately that didn't last once in bed and Daddy had to lay down with her to get her to finally fall back to sleep! Hoping and praying she'll get some sleep and wake up in a decent mood tomorrow!!!