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!
Sunday, April 24, 2016
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!