Wednesday, November 30, 2016

New gj shorter tube

Reagan was awake and vocal early this morning. I'm not sure what time exactly, but she was NOT going back to sleep. Finally around 7am I went in there and found her laying in wetness! No wonder she was so vocal! I changed her and we moved her to her chair. She's been very vocal and spunky all day. This morning her tube was leaking big time and after the second total clothes change, I finally decided it was time to schedule a tube change! They were able to squeeze her in for a 1:30pm appt TODAY. Thankfully Grandpa was available to pick Ryan up from school and Reagan doesn't have any Wed afternoon therapies so her schedule was wide open! So this morning she had a great session of speech and then after lunch we loaded up in the car and went to get a new gj tube! I decided to go back to her previous shorter length tube (the last two she's had have been the longer tubes and it seems we've had more issues with them), I figured it's worth a shot to see if she seems to do better with the shorter one again. She did really well with everything and we were even able to direct the radiologist so that he inserted her tube in the correct orientation this time so it's not always wanting to turn in her belly. Hoping this will be a much better, less leaky tube this go round. We came home and I put her straight into her wheelchair for school! She did well with school and then we helped her poo and gave her a quick bath! It's been a busy day! Hoping she sleeps well tonight. She dozed off for a bit tonight but kept waking herself back up with her own snoring and then she'd laugh and laugh! She's also had her hands in her mouth a lot today and her little face is starting to turn bright red again. This girl! What are we going to do with her!

Tuesday, November 29, 2016

Good enough for a photoshoot!

Reagan slept well last night, waking up right around 8:30am this morning. She was alert but quiet. She tolerated stretching well and then her nurse moved her to her wheelchair to play with switch toys. She had PT at 11 and worked on sit to stands from the bench. Definitely a two person job right now with the amount of tone she has going on! She did well with it though. Then this afternoon she had OT and worked on stretching, sitting, bearing weight on her arms and even did a craft project! She wasn’t super smiley, but content so I decided to see if our photographer was available to do our long awaited family photoshoot! Amazingly she was available so we ventured out to a nearby park around 4pm and took some pics. I think we got some good ones. She was still putting her hands in her mouth a lot, but we were able to put her hand under her leg for a few moments of hands free mouth! (Only moments…) Everyone did well though and we were back home by 5:30pm (although we did stop and look at some Christmas lights first). Definitely a productive day. Hoping we get some good pics and hoping the photographer doesn’t take too long to get back to us with them! I’d love to use some on our Christmas cards! 

Monday, November 28, 2016

A much better day

Reagan slept well last night and continued sleeping this morning, not waking up until the second diaper change in bed after 11am (missing speech)! She woke up content and spunky! She spent some time rolling around on the floor and vocalizing. Her nurse worked with her on sitting and bearing weight through her arms while on her tummy, she was a good sport with it all. This afternoon we got in a quick enema/poo and a bath before school/speech therapy. She did great! All in all I’d say it was a good day!

Sunday, November 27, 2016

Not a good day

I got up and went running this morning at 5:30am. My longest run yet...16miles! And boy am I sore! Reagan slept in this morning, not waking up until around 10:30am. She woke up very tense and serious. Grinding her teeth. Big wide eyes and flaring nostrils. Not a good sign. Her nurse moved her to the therapy room and she escalated a bit and got noticeably upset. Her nurse gave her oxycodone and I was able to get her to calm down and she dozed off. She slept for 4hrs straight and then woke back up very tense and upset. Again, I went up and tried to calm her down, but I don't think any of that helped until she finally got some more oxycodone in her system.She eventually settled back down and dozed back off. Sweet girl. She definitely just isn't feeling well today. Hoping it's short lived. Tonight she only made it 3 hrs before waking back up crying again. She settled down a bit when I picked her up, but that didn't last and she was full on crying again before long. Lots of thrashing and putting her hands in her mouth/hair. I was afraid she was going to tear her face up, so (against her will) I cut her fingernails. She loved that! She's been getting little cuts on her face lately from her fingernails, so I'm hoping to avoid it this time around. Really praying she can stay asleep!

Ryan was LOVING these bubbles! It was insane how many there were! 

Saturday, November 26, 2016

Sleepy but tense

Reagan slept well last night (finally) not waking up until right around 7:30am. She woke up a little wide eyed and serious but content. Very stiff in her body today. And holding her pees. Like REALLY holding them. I gave her a little while to see if she'd go on her own, but then finally helped her go around 10am. She dozed off shortly thereafter and then slept nearly all afternoon. She woke back up and was still peeless. I tried to help her go at 6pm and it was a no go. I tried again around 8pm and FINALLY she went. Ugh. It's crazy that she can be so sleepy and still, yet so tense and stiff at the same time! I don't understand it. Tonight she was happy to just lay and watch me hang lights on our tree (our artificial tree has so many lights out, but I'm not happy with any of the new tree options). She wasn't dozing back off on her own so finally around 11:30pm Mike picked her up and held her and she dozed off in his arms. Sweet girl! Hoping she wakes up OK tomorrow. Mike predicts a bad day with her being so still/sleepy today (and she has had unusual breath and crusty lips today)...still hoping he's wrong.

Friday, November 25, 2016

Darling clenchy girl

I woke up this morning at 5am to a beeping pump, and guess who was already wide awake?!?! This girl! I tried tucking her back into bed but I don't think she ever went back to sleep. Finally around 7am, I moved her to her chair. She woke spunky and sweet again (and holding her pee)! She was actually holding last night and I had to help her go at midnight. So this morning she woke up dry and her nurse had to eventually help her go. And she's been holding ever since. She's still very crunchy today. Constantly crunching over on that left side. Putting her hands in her mouth, but not nearly as much as yesterday. Happy to just pull on her tube or her shirt! Not nearly as much gas today, but she's also very clenched up (hence the holding). Super sweet and smiley though. Such a darling girl. Making little soft cooing vocalizations...she's the cutest! Hoping for a good weekend for my sweet girl! 

Thursday, November 24, 2016

Happy Thanksgiving!

Reagan slept well last night and woke up this morning again around 5am. Very vocal/kooky. Squirmed out of her covers again. I finally moved her into the therapy room at 7am. She was not going back to sleep! I ran in our local Turkey Trot 5k while Mike watched the kiddos. Reagan has been super spunky again all day today. Very smiley and sweet and a little more calm. Hands down her throat nonstop and spitty/chokey at times. We had Thanksgiving lunch with our neighbors and Reagan was very well behaved even with lots of little boys running around the house. It was a great lunch and then we headed home (down the street) and watched more football. Very thankful for a laid back, happy thanksgiving for my girl! Despite getting up early this morning, she's still raring to go at midnight tonight. Hoping we can get this silly girl to sleep!

Wednesday, November 23, 2016

Vocal and spunky

Reagan was up and vocal by 5am. I went in and found her laying on top of her covers, so I changed her diaper and tried putting her back under her covers, but she was NOT going back to sleep. Eventually I just moved her to the therapy room and put on some cartoons for her. She's been very vocal today. Lots of hands in the mouth. Very squirmy/kicky and spunky. This morning she had speech and PT and did well with both. Definitely a fight to get her to use her arms as she wants those hands in her mouth pretty much nonstop! She's been super spunky/vocal all day today. She was so loud tonight that Mike had to keep rewinding the television because he couldn't hear over her vocalizations! Hoping she winds down and can get some sleep tonight! Praying for a good Thanksgiving for her tomorrow. No traveling for us tomorrow, it's one of the first Thanksgivings we won't be spending with Mike's family (most of them were traveling this Thanksgiving). Instead we're just going to join our neighbors. So thankful we have such great neighbors!!

Ryan had a ball at the dog park! Even though Dominic didn't want to give up his ball!

The dog park located at a local veteran's memorial park with this really neat monument honoring veterans. 
Ryan made it the entire time without getting near any dog poo and then after we had left the dog park area he managed to put his knee in a pile of it and we had to head home! :(

Tuesday, November 22, 2016

Tense, sleepy, and kooky!

Reagan slept well last night...we all slept well last night! In fact, I got up and ran at 5am but came back and took a shower and fell back to sleep missing Ryan's speech therapy this morning! Ahhhh, so nice to sleep on a normal bed again! Reagan slept in til 9:45am and woke up sweet and smiley, but super tense in her body. She had PT this morning at 11am and she really made her therapist work for it! She definitely seems to be a lot more stiff in her body lately. Not sure what that's about, but it's not good. She dozed off shortly after PT and slept about 5.5hrs straight. She's definitely congested, snoring up a storm, with some clearish/yellowish discharge from her nose. Hoping she's not coming down with anything. She woke up just after 5:30pm and we gave her an enema and got in a bath before her nurse left for the day. She stayed awake for the night nurse, but was very vocal/kooky. Her nose was really running so we did some nasal saline and sucked it out and actually got a good amount out. The kookiness continued and an hour or so later she seemed like she could lose it at any second. Her nurse gave her some oxycodone and she calmed down and dozed off. Crisis averted. Praying she can get some good sleep tonight and wake up less excitable tomorrow!

Monday, November 21, 2016

Home again

Everyone slept really well last night! Thank goodness! We woke up around 7am, but Reagan kept sleeping. She slept in until around 9am or so and woke a little serious/wide eyed, but calm. Not a lot planned for today. We ate some pancakes and started cleaning up around the house. Reagan mellowed out the longer she was awake. She was initially holding her pee and we had to help her go but she started going on her own shortly thereafter. Before we left the lighthouse, we took some photos and then headed home! Reagan rode with me again and we listened to Christmas music the whole way home and Ryan snoozed in the truck with Mike. We drove back through Marble Falls, so at least it was a nice scenic drive! We got home around 2:30pm and unloaded our packed cars and then I put a lasagna in the oven and took Ryan to HEB. Reagan was awake the the entire car ride but dozed off on the floor as soon as we got home! Sweet girl! Her nose is still very runny but no more sneezing! I can't help but wonder if maybe she was just allergic to the dogs! I know I'm sensitive to dog allergens after being dog free again for a few years. She's been a sweet, laid back girl tonight. Every now and then she'll get a little burst of energy and let out a high pitched squeal, but it's been a quiet night for the most part. We're all pretty tired. We had a great trip but we are SO looking forward to sleeping in our own beds tonight!!

Sunday, November 20, 2016

Rough night but better day

Reagan had an awful night last night. She woke up around 2am FREAKING OUT. It started off with just some vocalizations but when Mike tried to lay down with her to get her to doze back off...she flipped out! Lots of kicking and hitting/flailing! It was very strange. Almost like an extreme clonidine freakout but delayed by 2hrs! I got her tomato chair and moved her to it and then gave her some oxycodone and held her until she reluctantly dozed back off. Thankfully that was the end of it and we all slept in until around 7:30am. She woke up way better. Still a little stressed/tense (holding her pees again), but calm. Today her nurse came out and worked and we were able to get away for a little while. This morning we went fishing again and finally caught two of those elusive catfish (catch and release) and some little brim, then this afternoon we went to the Deep Eddy Vodka Distillery and Tasting Room! It was such a pretty afternoon and we had some yummy cocktails (meanwhile Reagan and her nurse went outside and hung out by the pool). Reagan did get a little excited/spitty/kooky after being outside, but she settled down on her own once back inside and was actually well behaved the rest of the night! Ryan did get to jump in the hot tub tonight with Aunt Amber and Uncle Dan. He enjoyed it for a bit but then all he wanted to do was get in the cold pool so it was time for him to get out! Reagan did start getting a little kooky again right around bedtime (so there was no chance I was going to try clonidine), but oxycodone did the trick and she dozed off and went to sleep around 11:30pm. She's snoring big time right now. That poor little nose has been so sneezy/runny today (mine too). Hoping she can breathe through that nose tonight!