Monday, August 22, 2016

Awesome first day of school

Reagan had another great day today. I heard her vocalizing when I got back from my run and I was a little afraid she might not be happy. But when I walked in and peeked over the side of her bed, I found the sweetest, most smiley girl EVER! She has been ridiculously wonderful all day today. She had a busy day of therapies. Speech this morning and then OT and school this afternoon! She was AWESOME for everything. What a great first day of school. Her brother had a good day too, much to my relief! This afternoon we took another little walk around the block. We only walked two loops around our block but we made it a tiny bit further today (0.79 miles -> 1.54 miles total).








I guess you'd say he's grown some! 😳

Sunday, August 21, 2016

Sweet girl and a walk in the rain

Reagan slept well last night and woke up this morning calm but sweet this morning. We did see one little episode of head turn to the left and eyes fixed upward to the left. It lasted maybe 30sec-1min or so and then she finally broke out of it. It's been about 20 days since we last saw that so it's still definitely looking like its following some sort of hormone fluctuations. This afternoon we took a nice little walk. We're thinking of signing Reagan up for a Halloween Marathon in October, where kids can do their miles in the months leading up to the race and then the day of they do the last 1.2. Ryan rode his bike and we followed behind. We did get stuck in the rain for a bit. Reagan had a rain canopy, so she was the only one that stayed dry. Ryan took off and rode super fast, even jumping the curb trying to get back to the house quickly. We only made it 0.75 mile, but it's a start. Tonight Reagan was beyond precious! So cuddly and sweet...we just couldn't get enough of her.


Ryan playing with a worm...poor worm!

Saturday, August 20, 2016

Sleepy, sensitive, but sweet

Reagan slept in this morning until around 11:30am. She woke up tense and a little whiny and eventually needed some Lortab intervention. She dozed back off after the Lortab and then slept until the afternoon. When she woke up, she was noticeably improved. She even had a little crack of a smile! We brought her downstairs where she was good (for the most part) for the rest of the night. She did have a few little hiccups where she got upset and either nearly or actually did start crying, but we were able to calm her down pretty quickly. I think she was just a little sensitive to our excitement over the olympics! ;) Something is definitely a little off with her. She's been a little congested and had an interesting smell to her breath all day today. Still grinding her teeth. She didn't poo yesterday, not even after her enema, so I think her tummy is definitely giving her some troubles. She's also had that ongoing issues holding her pees, although she was much better today and didn't need help going even once.

Friday, August 19, 2016

Calm, serious, but holding

Reagan slept well last night and woke up just in time for speech this morning. She did OK, considering she had just woken up, working on her eyegaze and even ate a little. She's been pretty serious today (with a little tooth grinding) but calm. And all day today she's been holding her pees. We had to use the water trick multiple times today just to get her to go at all. When she goes...she GOES..but won't go on her own. Today was also her day to poo (we use a mini enema every other day to help keep her regular) and it was the first time that she didn't go. Not with the enema, not with help...not good. The crazy thing is, her body is still very relaxed, so it's not like the tone is what's interfering with everything. No idea what's going on with that little body of hers. She's been very calm and easy going though. Tonight she wasn't falling asleep on her own and freaked out when we gave her clonidine. Ugh. We just never know when it's going to work and when it's going to make her crazy. Hoping she settles down soon and sleeps tonight!

Waiting for bubbles...

Where's Ryan?

She's soooo long! :)

Thursday, August 18, 2016

Tube change and PM&R follow up

Today was a super busy day for us all! Ryan had speech therapy first thing this morning and then we came straight home to meet the teacher at his new school! After that we headed home and got ready for a even busier afternoon. We loaded up both kids in the car, dropped Ryan off at ABA, and drove to Dell for Reagan's gj-tube change. We have noticed the last several days her tube has been a little leaky and then yesterday we realized that the lock is also broken so the tube just freely spins around (making it more susceptible to popping out)...so at 4 months again it's definitely time for a change. They were able to squeeze her in at 2pm, giving us just enough to get that done and then head over to her PM&R appt. While we were waiting, I was texting with the DME rep about the carrot carseat and that we weren't sure if it needed more adjustments (this was the first time we had used it in the car), and the rep was able to just come meet us there since she was close by! So she was adjusting the carseat when they came to call us back. She continued making adjustments while we went in and had Reagan's gj-tube changed. Reagan was super calm and patient, which is good because the doctor again had an issue getting the tube out. The last time it was the balloon wouldn't deflate all the way, this time it was the tip of the tube that didn't want to come out! She was a rock star as always and just laid there being an angel. Once it was finally replaced, we took a quick video so I could document the broken lock, and then we loaded up and headed over to her other appt. This was basically just a follow up appt to talk with the PM&R doctor about the fact that the myobloc (botox B) didn't work at all this time. It doesn't really leave us with any options. In my mind, surgery is NOT an option. It's too risky that she'll have a negative reaction to the anesthesia or surgery/pain and often times kids go through these surgeries and have no lasting benefit. The oral medications aren't really a good option for her either because you can't administer them as needed and I refuse to drug her up all of the time. At this point we really just have to stretch and use AFOs to try to get her upright and weight bearing and that's the best we can do. We're not going to reverse her super pointed feet, but hopefully we can find ways to work with them! My sweet ballerina! Such a good, laid back girl today!



Wednesday, August 17, 2016

Laid back day

Reagan slept well last night and woke up sweet and snuggly this morning. Only one therapy today, speech. She did well with that. We're talking to the Tobii eyegaze people right now about getting a mount that we can use to make her eyegaze more accessible to her (so that she can use it where ever she might be sitting...tomato chair, wheelchair, etc...). The goal is obviously to give her the opportunity to communicate at all times, which means we need to find a way to give her access to the eyegaze as often as possible (not just during school or speech). A rep is coming out next week so hopefully we can come up with a solution that will work. Reagan has been good all day today. Very laid back and calm. She's got a busy day tomorrow (it'll be our first time to try the new car seat out), so I'm really hoping she gets a good night's sleep and wakes up just as laid back tomorrow! ;)



Today is my sister's birthday so I thought I'd post a picture of her and a little Reagan! 💗



Tuesday, August 16, 2016

Carrot 3 car seat take 2!

Reagan slept well again last night and woke up super sweet this morning. She's still very loose in her body. Super adorable. A little more vocal today, good vocal (a talky vocal not a crazy vocal). She had PT this morning followed by OT. She did well with both, but she did doze off at the end of OT with her gold medal in her hand! So adorable! Of course we had to disturb her a little because the DME lady came by to fit the carrot carseat to her. I have to say, once all of the pieces were added, it looked like it might actually work! We put Reagan in it and she never even cracked her eyes! She was out COLD. She did eventually wake up and was awake until 10pm or so tonight. She's been very still and very calm all day today. She's kinda been holding her pees all day today, having several really large (flooding) pees. Tonight her tummy was noticably distended, but I really think it was more gas than anything. I tried to move her around to help her get some of it out, but she ended up dozing off again in my arms. Sweet girl.




Never moved a muscle! :)