Wednesday, August 16, 2017

Pretty great

Reagan slept well last night and then woke up this morning cooing and in a good mood. Whew! What a relief! (She had squirmed halfway across the room!) She's been vocal and sweet all day. She did have a little brief period this morning where she looked like she was getting upset, but she pulled through and has actually been pretty great all day. She's taken several little cat naps today...enough to miss all of her scheduled therapies! She knows what she's doing. She's also had tons of gas and two huge poos today, so I'm sure that has to be a relief to her little tummy. Hoping she can continue to have good days. Would love to get in some therapies tomorrow and Friday as she's already missed two days of therapy this week!

Tuesday, August 15, 2017

Asleep then miserable

Reagan slept the entire day today. Slept like a rock last night and continued sleeping hard all day. Her nurse gave her medicines, checked her vitals, and changed diapers without waking her even once! She joked that I we could put a marching band in her room and that wouldn't even wake her up! All of that came to a screeching halt around 5:30pm when her nurse attempted one last diaper change. Reagan woke up crying and would NOT settle down. Mike had mentioned that she was very limp last night when he took her to bed, which is sometimes a sign for impending bad days. God I hope not. She was pretty miserable though. Her nurse gave her medicine but she didn't stop crying until I held her. And wouldn't stay asleep unless I was holding her. Eventually she woke back up and was miserable and crying once more. This time I gave her clonidine (her normal nighttime sleep medicine) and it worked. She fell asleep and I was able to get her comfortable on her mat on the floor. I carefully gave her the rest of her medicines and didn't even attempt a diaper change before bed. Praying she can stay asleep and wake up feeling better in the am. Poor sweet girl. Slept all day to wake up miserable. No fun.

Monday, August 14, 2017

Great day, gaggy night

Reagan had a great day today. She's been in a good mood and sweet and smiley all day. She had a busy day of therapies and did awesome with all of them. She had speech, PT, and then school and was a rock star for everything. Really great day for therapy. She's been full of laughs and smiles all day. Then this afternoon she's gotten very spitty/gaggy out of no where. She's not low tone like she normally is when she gets spitty, so I'm wondering if her tummy is bothering her. I hooked her up to a drain tonight and drained a good amount of fluid and air out of her tummy. Hopefully that helps. Praying she can get some sleep tonight and sleep off this nausea.

Sunday, August 13, 2017

Tense morning, but better by afternoon

It's been an interesting day today. Reagan was restless last night and making lots of noise, but she was content enough to just lay in bed and was dozing off and on.  I got up early to run but everyone was up and at em by the time I got home. Reagan had been crying and still had tears all over her face. She was very much on edge all morning and I was worried we were in for a full on bad day. Thankfully, she proved us wrong. She turned things around and actually had a pretty good day. She was slightly sensitive (especially in the morning), but really loosened up as the day went on. Tonight she was squirmy and sweet. Not getting sleepy, but still super precious! Hoping for a great day tomorrow for my girl!

Friday, August 11, 2017

Good girl, good day

Reagan had a good day today. She slept well and woke up super sweet and smiley. She's been pretty adorable all day today. Very smiley. Very sweet. A little easily excitable with certain things (the ipad), but overall very good. She had PT this morning with her new PT (her other PT is on early maternity leave) and was great for that. Then the rest of the day she took it easy with her nurse. Tonight she's been darling. Very talkative. A little handsy on her tube, but overall pretty precious. Hoping for a good weekend for my girl!

Thursday, August 10, 2017

Still precious

Reagan had a good day today. She's been smiley and precious again. So glad she turned things around. We weren't really sure where she was headed yesterday. No therapies as her OT is still out of town and her PT is starting maternity leave and we're transitioning to a new PT on different days.

Wednesday, August 9, 2017

Calm, sensitive, sleepy, tears, and smiles!

Reagan slept well last night and woke up this morning super precious and wide eyed. I was sooooo relieved to see that she woke up calm and content! She had speech this morning and did pretty well. She was a bit sensitive so they kept it low key. She worked on yes/no responses and using the eye gaze on the computer. She had a great morning and then got sleepy again this afternoon. She took a nice long nap but then woke up crying, but thankfully her nurse was able to get her back to sleep pretty easily. She slept til around 7pm. She woke up wide eyed and precious. A little dry mouthed but I gave her some swabs of water and I think that helped. She's been super smiley and precious all night. Huge ear to ear smiles. Just wonderful, this girl.

Tuesday, August 8, 2017

Tense and tears

Reagan slept like a rock last night. Mike said when he put her to sleep that he was nervous about a bad day...she rarely goes to sleep that limp unless a bad day is on the horizon. I was just hoping he was wrong. She slept in this morning, waking up in a seemingly calm mood. I could tell her nurse was a little apprehensive (she seemed tense to her), but she seemed super sweet and easy going to me. She had PT around noon and did a good job with that working on trunk rotation. She had her reaching and rotating to touch her switch while sitting up. She did get a little sleepy toward the end and then eventually dozed off. She woke up upset around 5pm but her nurse was able to calm her down with deep breathing and tapping. She woke back up crying around 6:30. She was not happy. I tried to console her but she didn't really calm until she fell asleep again. When she woke back up about 30min later, she was fussy but not crying. I just laid beside her the rest of the night and tried to keep her calm. I noticed her tummy was a bit rumbly (she's due for a poo but no chance she's going to take care of that today). She was OK with a little patting and reassurance. We watched Secrets of the Great Barrier Reef on mute twice in a row. It was very visually soothing and seemed to keep her calm. Thankfully between clonidine and Daddy, she's now asleep in her bed. Praying she sleeps and wakes up feeling a little better in the am!

Monday, August 7, 2017

Precious girl

Reagan had a pretty good day today. She had school and did really well with that. Not super into fine motor activities today, as she wanted her hands in her mouth, but other than that she was super cooperative. Very precious and smiley today. Tonight she was still super rolly polly (only tonight she managed to keep her pants on)! She kept squirming off her mat and we'd have to move her back up over and over again. She was spitting and chewing on her hands so much, her fingers were like icicles and both sleeves of her pjs were soaking wet! I changed her clothes and then decided to pick her up to try to keep her from doing that again, and instantly she fell asleep in my arms! Could this girl be ANY more precious?!?! I don't think so!

Sunday, August 6, 2017

Pretty good

Reagan did not sleep much last night. I kept hearing her talking off and on. She got particularly vocal around 4am so I went in to check on her and found her on top of her covers, completely squirmed out of both her pants and her diaper! Crazy girl! I fixed her up and tucked her back in and when I checked back in on her an hour later, she was asleep! An hour later, I check on her after I got back from my run, she was wide awake again and out of her covers. I tucked her back in again while I took a shower and she was back asleep by the time I got out! Glad to see she's at least getting some sleep! I found Ryan laying in our bed, just legs sticking out of the bottom of our covers, his head completely under the covers mid bed. Reagan's been in a good mood today. A little less smiley. Laughy especially when she has gas. Still lots of hand in mouth and rubbing that little red nose. A little more sensitive to talking today. Not getting upset, but vocal. Still a pretty good day for my girl! (Of course I did slice into my finger with a large super sharp knife, so I was just happy to avoid the emergency room! Thank God for our friend/neighbor that's a nurse practitioner!)

Saturday, August 5, 2017

So much better

Today was a MUCH better day! Reagan slept last night and woke up vocal and happy. She's obviously feeling much improved and she's been very content and happy all day. We took advantage of this great mood and we all got in the pool today. It was a little sunny, but she seemed to enjoy it! She was moving her legs around and straightening them out in the water, which is great (the last few times she's just pulls them into her chest and won't move at all). Afterward we went for a drive and picked up lunch. Reagan was talking the entire time. I love the way she's looks in this car. So much better than our previous one. She's been super squirmy today. She has squirmed all of the way out of her diaper on more than one occasion! Tonight she seemed a little more tense and was grinding her teeth a lot. She was still content...just tense. She was still awake when Mike put her in bed tonight. Hoping she'll go to sleep but who knows.

Friday, August 4, 2017

Really bad day

So last night was BRUTAL. We didn't even attempt to lay her in bed, she feels more supported in her chair when she's like this. She woke up every hour or so crying. I'd go in pat and shush her and eventually she'd go back to sleep. That was the good part. The bad part is that I was up and down all night long! She actually woke up this morning very serious and big eyed. She was calm for an hour or two before the tears started flowing. Unfortunately, nothing really seemed to help her more than 30min again today. Lots of really hard crying today. She slept off and on but usually just 10min at a time. She escalated again this afternoon and had several really big crying fits. Eventually it would seem she'd tire herself out and then doze off for a few minutes giving us some much needed time to recover. And then finally tonight...a ray of hope. She's still stressed but not crying. We even were able to lay her down in her bed and for now, she's asleep! Which is a huge step in the right direction. Thank you for keeping our girl in your prayers!

Thursday, August 3, 2017

Bad day

Reagan had a rough day today.  She slept in a little this morning, but woke up thrashing and very agitated. From that point on, when she was awake, she was crying. Thankfully (as this is not always the case), she was able to sleep most of the day away with the help of medication. Tonight, not so much. Nothing has really helped more than 30min at a time tonight. Something tells me it's going to be a very long night. It's been two weeks since we last had a real bad day...and you almost get lulled into that false sense of security...thinking (hoping) she can string together more and more good days. Today was definitely an end to that streak. Please keep my girl in your prayers!

Wednesday, August 2, 2017

Nurseless and getting tense...

Reagan was very difficult to get to sleep again last night. We were all exhausted though, so I think we must've crashed. I woke up around 4am to Reagan making a lot of noise (sounded like she was getting upset). I found her pump beeping and her laying on top of her covers sideways. Based on the volume reading on her pump, it was obviously beeping for hours...we just never heard it. I tucked her in and started her pump back up and went back to bed. She was awake and sideways again when Mike went to check on her at 6:30. Right around the same time I got a call from the nursing agency (never a good thing) to tell me our nurse was sick and not coming in! Really terrible timing as we had a busy day planned for today. I had to cancel my dentist appt and skip the grocery store, but between Grandpa and a nurse they found to come in, I was still able to accomplish most of what I needed to do today. Reagan had speech this morning. She was pretty sensitive to talking, so while it wasn't her best day (she wasn't really wanting to use the eyegaze), she still participated answering yes/no to questions. So that was still a win. Reagan was a little more serious, but still talky and cute most of the day. It wasn't until this afternoon that she lost it! Not sure what triggered her (maybe something on tv), but she burst into tears and the nurse couldn't calm her down. I went up and held her and she calmed down. She eventually dozed off on the floor, taking a nice little nap but again woke up crying. Ugh. Not good. We've definitely seen an increase in tension over the last few days. Not sleeping as well. Today she had cold feet and the one red ear...both signs of dysautonomia. Ugh. Prayers that we can avoid a bad day. :(

Tuesday, August 1, 2017

Still adorable

Reagan was up a lot last night, but I do think she dozed occasionally. I heard her making noise when I got back from my run and went in to find her wide eyed and super precious! I was a little worried at first because those wide eyes looked a little wild, but she was actually very calm and content. Still very vocal today. She's been talky and had lots to say all day. She only had one therapy today, PT, but she did really well with it. She did 21 sit to stands!! Actually pushing through her legs to stand up! This is a HUGE improvement. To get her to do any weight bearing is amazing. She's had jello legs for years now! This afternoon we decided to jump in the pool. Ryan was being quite obnoxious (he's in a phase I think), constantly trying to swim under her and then splashing her in the face with water. Our swim was cut a bit short when she twisted to the side and inhaled some water! Ugh. This girl. I let her float for a second while her nurse tried to get a picture of her and her brother, and she twisted to the side and took in an mouth full of water. I pulled her out and laid her on her side, but she recovered fairly quickly. She was great the rest of the night. Very happy rolling around and squirming off her mat on the floor! This girl is a mover and shaker! So adorable...