Saturday, April 30, 2016
My girl was up at 4am with the thunder/lightening. She was very vocal and I kept hoping she'd fall back to sleep, but she didn't. Finally at 4:30am I got up, changed her, and moved her to her chair (and went back to bed). She did eventually fall back to sleep and slept until just before 8am. She's been super sweet and smiley again today. Vocal, but happy vocal. Still having tons of gas and one huge poo on her own (thank you cefdinir) and another with help! Still a mover and a shaker, squirming right out of her pants! Hoping tomorrow is another good day as we have our big race at 7:55am! We're getting a soft start (we get to start 5min before everyone else just so we don't get trampled while pushing our chairs). As of now I think there's only one other angel team running tomorrow, but it's still awesome to do this and promote inclusion with Ainsley's Angels!
Friday, April 29, 2016
My girl was awake and vocal at 5:30am. She had leaked through her diaper (because her last wet diaper had been at 6pm yesterday), so I changed her and moved her to her chair. I don't think she ever went back to sleep, but I did. She's been super spunky and adorable today. So smiley with huge eyes and making great eye contact. No therapies today but she did work on her eyegaze a bit this morning with her nurse and then this afternoon with her teacher. She wasn't a huge fan of us talking today and would vocalize letting us know she was over it. Her tummy has also been pretty gurgly again and she's having TONS of gas. Tonight she was so squirmy on the floor that she literally squirmed out of her pants AND diaper! Silly girl! She's a mover! Hoping she hangs in there and has a great weekend! We're signed up for our first official 5k together this Sunday, A Noble Run, right down the road from our house! And we're running as part of team Ainsley's Angels!! So exciting. Praying for good weather and a happy, laid back girl!
Thursday, April 28, 2016
Reagan has been quite spunky today. Still tense in her body and crunchy, but very smiley and an overall happy girl! So glad the bad was short lived. She had both PT and OT again today. Got some good stretching, despite her struggles. We helped her poo today and it was the first poo she's had in over a week! Not good. Definitely harder than usual. Poor thing. She has to feel a little better now. We definitely think some of the vocalizations and tension she's still fighting is tummy related. Hopefully things will start moving again soon and she can relax a little. Tonight she was grinding her teeth a lot. It was serving me crazy!!! And she did have another clonidine freakout sort of episode (minus the clonidine). It's strange how these episodes seem to come on all of a sudden, we see them a few consecutive days, and then they are gone again. She did finally settle down and go to sleep (ironically) after a dose of clonidine! ;) Hoping for some sleep tonight for my girl.
Wednesday, April 27, 2016
So today my girl woke up super tense (and with another stinky diaper). She was VERY crunchy, basically curled up in a little ball! And the tension and agitation just kept escalating and couldn't be soothed. Eventually, we had to give her oxycodone...and thankfully it worked. Whew! She slept for about 3.5hrs and then started waking up upset again. Never really tears but super agitated, lots of flailing, eye rubbing, just overall miserable. During this time we did put some cotton balls in her diaper and then test her urine. It came back positive for leukocytes and nitrites (what we typically see when she has a UTI). Ugh. We gave her oxycodone again and she dozed back off again. I spoke with the doctors office and they agreed to let us just collect a clean sample without cathing. Her nurse was able to use sterile techniques and collect a sample with her pretty much still asleep. I ran it to the doctors office just before they closed for the day. Their initial in office testing came back negative, but they're sending it off for culture. Something tells me it's going to come back positive, but we'll hold off and wait to start antibiotics until we get the final word. She did wake up for a longer period tonight and was still very vocal and tense, but almost a little smiley. This gives me hope! Unfortunately, she refused to accept Daddy trying to put her in bed and flipped out a bit flailing and thrashing but settled down with medication and moving her to her chair. Not a fan of her sleeping in her chair, but at least she spent a lot of time in her bean bag chair today. She's asleep now, so I'm hoping she'll stay that way!
Tuesday, April 26, 2016
Well the good thing about traveling back on Monday is we traveling on a day when we would normally be nurseless! So today (which felt like a Monday but was really a Tuesday) we had our nurse here! Reagan woke up fine, a little vocal/kooky but fine. She had speech at 10 and they worked on feeding again (she ate it UP)! Unfortunately about 20min later (I don't necessarily think it was related to the eating), she burst into tears. It appeared that it was tummy pain related...her tummy has been super gurgly all day. We gave her some simethicone but then the tears hit again around 11:20. They were short lived though (we gave her some ibuprofen) and told PT she could still come. Reagan did OK with both PT and OT. A little vocal with high pitched squeals at times...she definitely let her therapists know when she wasn't digging something. But it was good for her to get some stretching in after such a long weekend. She did doze off for a little bit and we decided against school. She was just too tense. We did squeeze a much needed bath in, so that was good. Another important thing to mention is the stinky pees are back. I'm not sure if that means another UTI or not. We're going to see if this continues tomorrow and then ask if maybe we can just bring in a sample rather than putting her through another cathing again! Hoping everything resolves tomorrow, but I'm not sure what direction she's headed. I did notice she had crackly lips yesterday and today which often is a sign of and increased acidity in her saliva and impending bad days. Let's hope not, but tomorrow will tell.
Monday, April 25, 2016
Everyone slept well last night but Reagan was awake and laughing early this morning. We got packed up and left Denton around 10:30am. Ryan was especially sad to be leaving Grandma. We took a bit of a scenic trip back so that we could stop by and visit Mike's boss who retired last year. He lives in Granbury in a beautiful lake house. We just hung out for a bit chatting and enjoying the view. It was a nice little detour and allowed us all to get out and stretch and grab a bite to eat before heading all the way home. Both kids were great in the car, although I wish there was more sleeping going on, it would have been hard with our giggly girl. We got home right around 4pm, unloaded tons of stuff from our car, and then tried to relax a little before bedtime. We are all pretty exhausted, but so glad that our girl hung in there and had a good trip! I'm hoping everyone cooperates so we can get a good night's sleep tonight!
Sunday, April 24, 2016
Reagan slept well until about 4am last night. She woke up with some giggles, I changed her and covered her back up, but she never really went back to sleep. She's been very sweet and calm today. It was a great day to go and meet one of our longtime blogger friends Jocalyn and Kendall! I've been emailing, talking on the phone, and texting Jocalyn for years yet we've never actually met in person! Well, today was the day! My mom and I loaded up the kiddos and headed to my sister's house around noon. Meanwhile, my sister met up with Mike in Dallas and brought him back to her house. I dropped my mom and Ryan off at my sister's house, so Mike, Reagan, and I could drive south of Dallas to go meet our friends. Kendall was having an off day, but I'm glad they let us come anyway. If anyone understands, it's us. Kendall was super spunky and full of personality...it was too much fun watching her give her parents a hard time! Reagan was super laid back and calm which made our lives easy. Kendall's dogs loved us, Reagan got tons of kisses and we all got plenty of loving to make my sister's dogs super jealous! It was great to just sit and talk for a while. Too bad we live so far away from each other. Eventually we left and drove back for Grandma and Ryan. Ryan had more fun with Uncle Dan on his drum set and synthesizer. Played with more worms. Then it was time to head back to my mom's and rest a little. It's been a busy trip and tomorrow we head back home. Hoping everyone gets some sleep tonight!
Saturday, April 23, 2016
Today we just took it easy and hung out around Grandma's house. We sat on the porch and relaxed and then laid in the grass for a bit. It was a nice day for it. Daddy fished all day and we saw lots of pics of many a huge bass he caught. My sister, her husband, and dogs came over tonight for dinner. Ryan enjoyed more time chasing my sister's German short-hair pointer. Poor Ira. Reagan was super sweet and we even got a few giggles out of her before she dozed off. I'm hoping that's a good sign. Maybe tomorrow we'll actually get some smiles!
Friday, April 22, 2016
Both kids slept pretty well last night. Ryan in a tiny pack n play and Reagan on a twin mattress on the floor beside our bed. Reagan woke up once around 4am fussing, she had wet through her pants. I changed her and covered her back up and she went back to sleep. Ryan slept in til 9:30am (of course he didn't go to bed til 10:30pm) and Reagan until around 10am. Our only plan for today is to drop Mike off at Cabelas in Allen to meet up with his friend to go fishing. After the drop off we went to Dallas to visit my sister. We didn't get there til around 2pm. Both kiddos were ready to get out of the car and relax. Ryan had fun playing with the fountains on her pool, digging for worms in her flower bed, and chasing her German short-hair pointer! Reagan just relaxed by the pool and took it easy. Ryan also was LOVING playing on uncle Dan's drum set! It wasn't all fun and games though, while spinning the wheels of Dan's bike, Ryan got his finger smashed in the chain! And then later when playing on the stairs Ryan took a tumble down the bottom two steps straight onto his head on the wood floor! Poor thing! Dan and I were both watching him and saw it happen in slow motion...he hit like a ton of bricks! I put a cold compress on it and kept an eye on his pupils, but once he stopped crying, he seemed fine. We ate dinner with them and then headed back to my mom's house. Ryan dozed off in the car and was OUT, Reagan dozed off but was back awake before we got there. We got back around 9pm and then it was time for me to start giving nighttime meds and getting everyone ready for bed. We're all exhausted. Hoping to get to bed at a reasonable time tonight, but it'll probably still be midnight before I climb into bed. That's just how it always seems to work.
Ryan riding Daddy before he left for fishing
The drums take 1
Hanging out with Aunt Amber...Reagan loved her soft bed!
Reagan and Kate Moss (my sister's dog)
Standing up chalk (just before he decided to chunk a handful into the pool)!
Taking it easy.
Relaxing on the love sac
Back out at the pool...still serious but content
Thursday, April 21, 2016
Reagan woke up around 7:45am this morning, very somber and serious. We tried our hardest all day to get a smile out of her and it's just not happening. She's still very calm and quiet...just serious. She had PT at noon and they put her in her stander. Immediately (upon raising it), she started flailing and rubbing at her face, so they put her back down into sitting. She calmed down and then her therapist raised her back up (not ever fully extending her knees). Something was definitely bothering her. Then this afternoon when she had OT, we noticed her grimace a few times again. Not sure what that's about. She did fine with OT and then school afterward. Just an overall serious sort of day. This afternoon we packed up and headed off to Dallas. Mike is going fishing with a friend of his this weekend so the kids and I are staying with my mom. Both kids did well in the car. Reagan got a little thrashy again around 9:30pm. Poor Ryan, she kept hitting him in the eye with her fingers/elbow! I had to hold her arms down and she eventually dozed off. She was OUT by the time we got to my mom's house. Ryan was still awake and going strong! As we were bringing everything into the house, I caught a glimpse of Reagan's pump and immediately thought I FORGOT HER PUMP CHARGER! Oh my God. Throughout the course of the day, her pump loses most of it's charge so there was no way it would have made it even another hour or two. I freaked out. I started trying to contact everyone I knew in Dallas with a special needs kiddo and I called the DME company. They put me in touch with their local rep who was not too keen on bringing us a charger. After a lot of urging by yours truly, he finally agreed to meet up with us. So Mike got back on the road and drove about 30min to go get the charger. Thank God this all worked out. Whew! So relieved. She's all hooked up and we're finally climbing into bed at 1am. Long day.
Wednesday, April 20, 2016
Reagan slept well last night and woke up this morning still super sweet. During speech today she ate some baby food. It's been a long time since we've done this, as we didn't want to cause any tummy issues, but she did well with it (eating close to a half a container). No other therapies today. She was super sweet and smiley with big eyes...we were thinking it would have been the perfect day for pictures! I had spoken with the photographer a while back about possible picture days (we were originally supposed to do this shoot last fall) and today was one of the days we were considering, but it's been raining so much this week, we really didn't think there was any chance of it clearing up! Boo! I wish we had been more proactive. She did take a long nap this afternoon though from 1-4pm, but woke up just as smiley as can be. Tonight I was snuggling with Reagan and she was starting to get sleepy and then POW crazy clonidine freak out again (but without the clonidine). So strange. She did eventually calm down without any medication and now she's in bed snoozing. Hmmmm. Not sure what that's about, but this is the second night in a row we've seen that. Hoping for sleep again tonight for us all.
Tuesday, April 19, 2016
Reagan woke up around 4:30am this morning. She was awake, but sweet. I put her in her chair and I went back to sleep. She's had a good day today. She's still pretty crunchy, but super sweet and smiley. She had PT at noon and did well with that. The worked on a lot of rolling (when she's crunchy, she's a natural roller)! Then this afternoon she had both OT and school/vision. It's been a busy day! She's been holding her poos for almost a week now, so before her bath we did help her out and finally get her to go! This girl is a clencher. We also had the new potential Monday nurse orient today. Everything went smoothly. Hopefully it all works out...we've been waiting a long time to get this shift filled. Tonight she started getting groggy and Mike went to lay down with her and she freaked out! What we would call "clonidine crazy", she started thrashing and flailing all of a sudden! Out of no where...but without clonidine!!! Eventually I did give her clonidine and she settled down and went to sleep! Hoping she sleeps tonight.
Monday, April 18, 2016
Reagan had a good day today. She slept well last night and woke up super sweet and darling this morning. She's been pretty crunchy today (and still very much into her hair), so it was a little hard to get her head up and looking at the computer during speech today. While crunchy, she's been extremely cuddly, so I've gotten in a ton of snuggles today! One perk to not having a nurse. Maybe the only one. Today we did interview a new potential nurse to work Mondays. She's going to come back tomorrow to orient so fingers crossed everything works out. It's really hard not having a nurse during the week, one because it's hard to get Ryan to and from school on those days and it also makes it nearly impossible to schedule drs appts on that day! It's been so long since we've had anyone reliable working those days, I'm seriously at the end of my rope with this nursing agency. I mean, look at this girl! Who wouldn't want to work with this smiley girl!?!?!? She's adorable! Hoping for continued good days this week. We've got another busy weekend planned so hopefully she holds it together and we keep these smiles going for a while!
Trying to choke herself with her tube! Ummm NO! She's trouble!
Sunday, April 17, 2016
We had to wake both kiddos up this morning at 6:30am...both were still snoozing in bed. Thankfully both woke up well and we quickly got them dressed and out the door just after 7. We made pretty good time on our drive to Houston and only had to deal with rain as we were leaving Austin. The weather in Houston was still clear, although there were some serious wind gusts mid walk that required us to break out Reagan's wind/rain canopy. She did well with everything, except the loud music, which they quickly turned down at our request. The new location for the walk is very pretty but the walk itself was pretty lackluster. The attendance was down significantly this year and most of the mito families I know were no shows which was kind of disappointing. But we met up with our Houston family and friends and walked for our girl! It was great to see some of our long time friends and catch up with everyone. Ryan did fine most of the walk but started to get cranky toward the end (it wasn't even a full mile). After the walk, we headed over to our old neighborhood to visit with some of our old neighbors! They were so excited about seeing the kids and it was nice to just sit and talk with them for a while. We headed back around 3pm, both kids did great in the car, Reagan was all into her hair and driving her nurse a little crazy! Poor Ryan, I don't know how many times he was knocked in the head by Reagan's elbow, and he just put up with it! And again we only got into the rain just as we got back into Austin. We saw lots of standing water everywhere, so it was obvious it had been raining here pretty much all day. Glad we missed it in Houston. We're all exhausted so hoping we have a quiet uneventful night tonight. So glad my girl was able to turn it around and had a good day today!