Tuesday, May 31, 2016
The sound of Reagan kicking around in her bed woke me up last night at 3am. She was not going to go back to sleep, so I moved her into her chair in the therapy room. She was still awake and kicking when I went to run at 5:30am but was asleep by the time I got back (then awake again by the time I got out of the shower). I'm guessing that's probably how she slept...just a little here and there. She was good though...super smiley. Hands still crammed in her mouth a lot, but a huge smile at all times! She had PT and OT today and did well with both. She was making great eye contact today and was just very interactive. Still pretty spitty today (that's why she's sporting a bib in these pics)! Hoping for a good week for my smiley girl...and better sleep!
Monday, May 30, 2016
Reagan had a good night last night and she's been all smiles ever since she woke up. I gave her an early morning bath and then she had speech. She did great with speech and then we decided to load up everyone and take a drive through the hill country. We drove out to Inks Lake State Park...a beautiful drive, but not a lot to see once there. Ryan was all geared up to go to the park, but there wasn't much of a playscape and it was in full sun and quite hot. We let him play for a bit and then we headed toward Marble Falls. There was a nice shaded park there and we all got out for a while. Ryan played with some kids on the play ground and then checked out the geese. We thought about going for lunch, but we decided to just drive back home. Ryan was so worn out that he passed out cold once we got home. Of course that made for a late night for him, but that's OK. Last week of school this week. Reagan was a little spitty tonight and grinding her teeth a lot. Not sure what that's about...but that teeth grinding is like nails on a chalk board! :/
Sunday, May 29, 2016
Reagan slept the whole night through in her chair and woke up this morning feeling SO much better! Whew! Thank goodness. She was still sensitive, to us talking or Ryan being too crazy, so we just tried to keep it quiet around her. Thankfully no medicine was needed today. Grandpa came over this afternoon and swam with Ryan. That was good, Ryan was able to get some energy out and give Reagan a break from his craziness! She was a little more easy going tonight, although not really getting tired. I did finally give her clonidine to help her doze off, but she's in her bed and asleep now so hoping for an uneventful night!
Saturday, May 28, 2016
Reagan slept well last night and woke up cool and calm this morning. She was a little aloof...mommy couldn't get a laugh out of her but daddy did. We immediately noticed some sensitivity to talking as she started vocalizing and was on the verge of tears. She calmed down though and was good as long as we were quiet. Mike suggested I go ahead and give her some pain medication right then, just to try to avoid any major freakouts. Mike and Ryan went to the store and were talking on their way out and that totally set her off and she didn't recover. Lots of crying. Obviously the medicine wasn't working. About an hour later, I gave clonidine a try. Lots more crying. Eventually, she did fall asleep but it's hard to say if it was the medicine that helped or not. She slept for several hours and then woke up and was OK for a while. A little moany at first but she did continue to escalate over time and eventually I had to give her Lortab. That did help and she fell asleep in my arms, where she snoozed for a while. I was able to transfer her to the guest bed where she slept for another bit until her brother woke her up. When she woke up, she was pretty serious and still not happy. We moved her upstairs and I spent the rest of the night beside her until she fell asleep (again with the help of Lortab...the only thing that seemed to work today). We are too afraid to even attempt moving her, so sleep in her chair she will!! Hoping she stays asleep and wakes up feeling better in the morning!
Friday, May 27, 2016
My girl slept well again last night and even slept in a little this morning. She might have kept sleeping, but her nurse had to change her because she had leaked. Thankfully, she woke up happy and has been great all day long. She had speech this morning and she ate! She's really loving tasting and she's doing a pretty good job at putting it away. Then this afternoon she had a make up PT session, where she did great sitting although still a little loosey goosey, followed by a bath. She's been good all day although tonight she did seem to have some slight sensitivity to us talking. I hope that's not a bad sign. Really hoping for a good three day (nurseless) weekend for us or it's gonna be a loooong one!
Thursday, May 26, 2016
Reagan slept well again last night and woke up this morning super sweet. She was very calm and relaxed but sensitive in her eyes (she kept flinching and closing her eyes). She had both PT and school today and did well with both. She's been very relaxed and precious all day. Tonight she was on her best behavior while I went to bunko. After I got home, we snuggled and she fell asleep in my arms. Sweetest girl ever!
Showing support for a friend from high school finishing the last of her chemo tonight!!! So happy for her and her family!
Wednesday, May 25, 2016
We are SO happy that my girl not only slept the night through, but she woke up this morning feeling much improved!!! Whew! Thank God. Not a lot going on today...just one therapy speech this morning which she actually did pretty well with. Then this afternoon her teacher came. Again, considering the day she had yesterday, she did surprisingly well with everything. So glad she turned the corner so quickly. Hopefully the rest of this week is good and calm.
Hair dried a little wavy today! ;)
Grandpa kept catching them and throwing them back at Ryan!
Tuesday, May 24, 2016
So...today was what we were worried about. Reagan slept in a little but then woke up NOT happy. Her nurse gave her some oxycodone but it didn't help. It wasn't until an hour and a half later when she tried the clonidine that she finally settled down and fell asleep. She slept for a while and then woke back up around noon upset again. Her nurse was able to calm her and get her back to sleep without medication this time around and then she slept the rest of the afternoon. She woke up around 5pm and was calm albeit a little moany (and burpy). This continued til around 7 when she started escalating a bit, grabbing my hand with a death grip and fussing. I gave her some Lortab and she dozed off and slept the rest of the night. We really weren't sure if we should try to move her or not, but hated the idea of her sleeping all night in her chair, so Mike gambled and moved her to her bed. Thankfully it worked out. She stayed asleep and now we're just hoping she'll get some sleep tonight and wake up feeling better in the morning! Fingers crossed!
Monday, May 23, 2016
Reagan slept well, waking up right around 6:45am. She woke up super sweet and smiley once again. Still lots of kicking around with her legs and hands in her mouth. Still making lots of vocalizations...but still happy ones. It's hard to say what direction she's actually headed. I would tend to think all of this energy will eventually fizz out and she'll have some sleepy days...but not yet. Or the increased tension and tone could be leading up to bad days. Lets hope it's the former and not the latter! Ryan had a routine dentist appt this morning that did not go so well. He immediately remembered where we were and though he loves the waiting room, he did NOT want to go back. We managed to distract him though, but getting him to open his mouth for the dentist was another thing. Ugh. It's crazy, because he has no problems with me looking in his mouth and brushing his teeth (and he'll even brush his own) but definitely not a fan of the dentist. Maybe he remembers having that cavity filled a year or so ago and we had to strap him down? This kid has a memory like an elephant! He fought like mad...all she did was look in his mouth and then swipe some flouride over his teeth. He loved that. Acted like he was going to throw up afterward. Of course, as soon as we leave, he wants to go back for another toy from their huge stash. No school today, it was a bad weather make up day that they didn't need. We came back home and got Reagan ready for therapy. She's been very attentive so she had a great session with speech this morning. Afterward we gave her a much needed bath! Then this afternoon we loaded up both kids and drove out to a park near the lake. Ryan loved it (he played with a little girl the whole time)...it was a little humid and too mosquitoy for me and Reagan! I got eaten alive. Both kids were good the rest of the night. Reagan spent some time lounging with Grandma before bed. Hoping for a good week for my girl.
Sunday, May 22, 2016
Reagan woke up super vocal around 5am...she was NOT going back to sleep! I changed her and moved her to her chair in the therapy room, but left her tv off. I was hoping maybe she'd go back to sleep. Well I don't think that ever happened, but she did let us sleep! We actually slept until almost 9am! We woke up just as Grandma was walking in the door. Ryan was still in bed, awake, but quiet so even he didn't wake us up! Both kids were super happy to see their Grandma! Reagan has been super spunky again today. Hands in mouth nonstop, lots of movement, lots of tone...but all smiles! Grandma even made a lime jello/coolwhip dessert so Reagan could eat it! She loved it and I think she would've just kept eating it all day if we had let her! Ryan had a blast running around playing hide and go seek with grandma and then chasing her around the block on his bike (of course the second I went out to relieve her, he tipped over and skinned his knee)! Reagan has been so super sweet and talkative today. Tonight I swear she was saying Hi to me! I was saying Hi to her and then she'd say it. Over and over again. Cutest. Thing. Ever!!! Love this girl! The hands in the mouth (crammed in her mouth) are driving me crazy, but she's just so cute and so smiley, you can't help but smile! She has been holding pees a little this afternoon, so hopefully nothing comes from that. Such a sweet girl.
Saturday, May 21, 2016
Reagan had a good day today. She's been super sweet and smiley. Lots of movement, kicking herself all over the floor. Hands in the mouth constantly...usually both of them. Big, huge eyes! Very alert and very spunky! We're nurseless Sat-Mon, so we don't have a lot of plans this weekend. Most of the day we just hung out and took it easy. Tonight we did go over to the park behind my dad's house to see fireflies...for whatever reason there are a ton of them out there but none near our house! Ryan had a blast and didn't want to leave. I'm not sure if Reagan saw them or not, but I'm sure she enjoyed just getting out of the house. Tonight after brother fell asleep, Reagan and I were snuggling and she was grinding her teeth like crazy. It was driving me nuts. I didn't notice her doing it in her chair or on the floor but the second I picked her up, she'd start doing it. Like fingernails on a chalk board! She was not falling asleep on her own (and it was almost midnight), so it was definitely a clonidine night. Hoping we all get a good night's sleep tonight!
Friday, May 20, 2016
Reagan slept well last night and woke up a sweet spunky girl this morning. A little vocal, a little kooky, but good. She's had a good day today. She only had one therapy today, PT, and she did very well with it. Spent some time in her stander. She's a little more crunchy and into her hands today. We had to put her arm restraints on to try to keep those hands out of her mouth. The rest of the day she just took it easy. She's been pretty gassy today so we helped her go...twice. Moving a lot more, not nearly as loosey goosey as the rest of the week. Ryan went on a field trip today at school and had a blast. It's a little gym type place where he's going to go to camp a few weeks during the summer. I'm glad he liked it. Then tonight both kids stayed with Mike while I went to watch my niece in her talent show. She was amazing! She's a pianist and I was so impressed. Ryan loves music and should probably take piano lessons, I'm just not sure he could control himself around a piano! He'd probably just want to go nuts with the keys! Hoping for a good weekend for my girl! No nurse, but Grandma comes in Sunday morning!
Thursday, May 19, 2016
Reagan was a little difficult to get to sleep last night and got super agitated and vocal when Mike laid down with her. I gave her some Lortab and thankfully that worked. She dozed off 15min later. She slept through until 5:45am when she woke up and was vocal but good. I changed her diaper and put her in her chair and I went back to bed. Well apparently, so did she! She was still dozing this morning when she was supposed to have a make up session of PT, but we decided to just let her sleep in since she had a urology appt we were going to have to go to and we didn't want to make her mad. She finally woke up around 10am when we needed to start getting her ready for her drs appt. She was calm and quiet, a little serious but giving us the slightest hint of a smile. The weather was awful and it had been lightening and pouring rain all morning. It was a lovely wet drive into town. When we got there they first did an abdominal ultrasound. She did great for that, although she still had some residual pee in her bladder despite just having a huge pee that leaked on her nurse in the car! Then we met with the dr. Everything looked good on the ultrasound. Her anatomy looks good, there was no sign of any scarring or thickening of the walls of her bladder...nothing to be concerned about. The urologist mentioned just the way she sits, with her legs together in a chair, can predispose her to UTIs. She also would like for us to meet with GI and try to come up with a plan to get her pooing on a more regular basis (she said constipation is a huge risk factor for UTIs)...but good luck. We've been dealing with poo problems forever! She also mentioned a liquid cranberry supplement, Cystex, that might be worth trying. And lastly, we could consider giving her a daily prophylactic dose of antibiotic to try to ward off infections, however she wouldn't recommend that unless we start seeing them occur every month or so. Reagan was good the rest to the drive home and then promptly fell asleep and slept the rest of the afternoon! She woke up just before her nurse left and was a sweet girl the rest of the night. A little gassy, so I let her roll around on the floor for a while and then I picked her up and she fell asleep in my arms. Sweet girl.
Wednesday, May 18, 2016
Reagan slept well last night and woke up this morning after 8am (with a once again soaked bed...this is maybe the 4th day in a row we've had to change her sheets). She was good this morning. Calm, maybe a little more serious. She had speech again this morning and worked on her computer. She seemed a little more tired...maybe it was because she slept in a little and the session was 30min earlier than usual? She seemed a little sensitive and even let out a whimper at one point, but that was it. After speech, we loaded her up and headed to the mall to get her hair cut. She seemed fine on the way there, maybe slightly sensitive to us talking, again we heard a slight whimper here or there. When we walked in, she immediately started getting upset. The mall music was turned up really loud and it definitely set her off. Thankfully the music in the hair place was off so we didn't have to worry about that although I did put some ear plugs in her ears after we removed her noise canceling head phones...just in case. Her nurse held her and I attempted to hold her head...although half the time she just wanted to fight against me and would fight harder to look in the direction she wasn't supposed to. All in all, she did great. Especially considering we had tears before we even got there! And her hair looks super cute again. It was definitely time for a cut...she had tons of broken ends from having it pulled back all of the time. She whimpered a little more on the way home and did have a few more meltdowns once home. It would just come out of no where, she'd break out into tears, cry for a bit, and then calm down and be fine. She was causing her nose to run like a faucet though. All of those tears combined with her already runny nose...it was a mess. Her nurse tried suctioning her nose but that just made her even more angry. And her tummy has been going wild! Lots of gurgly, bubbly noises coming from her belly. That has to be bothering her! Tonight the aggravation definitely seemed to escalate. Instead of crying every 30min-1hr, she was crying every 5min or so. I finally gave her some oxycodone but that didn't seem to do a thing. Then an hour or so later I tried clonidine and that helped her to settle down and she even dozed off for a while. When she woke back up, she was tense, but OK. Her tummy was still bubbling/gurgling A LOT. Poor thing. Not sure what this is, but really hoping she sleeps tonight and wakes up feeling much improved in the morning!