Monday, November 13, 2017

Kooky girl

Reagan was quite the turkey last night. She was fighting sleep like crazy. She was SO vocal, but it was a crazy on edge sort of vocal, like she might cry at any minute. Not good. Needless to say, Mike and I didn't get much sleep. I was SO tired this morning that I decided to treat myself to a nap! I don't know the last time I did that. I have so much to do, but I'm glad I laid back down. That was my early bday present to myself. Reagan has been super vocal and spunky all day today. She had speech this morning and her therapist was very careful because she seemed like she might lose it, but she never did. She did fine for PT, the DME rep visit, and school/vision too. She just sounded like she was on edge pretty much all day long. I think she's def having some tummy pains. She's had tons of gas today, so that can't be helping. Hands in the mouth nonstop, she's been wiping spit all over her clothes, hair, face, it's driving me nuts. We haven't had the heart to put her restraints on her though. She had to wear them too much the last few days. Her nurse tried socks on her hands, but those ended up wet pretty quickly (or off). She's a turkey. Hoping she settles down and has some relaxed laid back sort of days this week. We could all really use a break!


New stroller we're hoping to get to replace her Convaid Cruiser which she's outfgrown (this is the stroller we keep in the car to use for doctors visits and short trips to the stores/restaurants). The Leggero Reach. It's lightweight and easy to fold like the Convaid, but has a tilt/recline feature that the Convaid was missing. It also seems a little more cushy. Hoping we can get insurance to approve it. Always a battle. 

Sunday, November 12, 2017

Nausea gone and full of spunk

Reagan woke up today and HALLELUJAH the nausea was gone! Mike and I had stayed up late on our anniversary watching a marathon of Stranger Things. We didn't get to bed til 2:30am or so. And then we had a new nurse working this morning at 7am, so I was up early to talk with her and get her situated, but Reagan slept in. She was in her chair because we didn't dare lay her down last night being as nauseous as she was. Eventually around 11am we decided to try to move her to her bed. When Mike picked her up to move her, she woke up and then she was wide awake! She was spunky and vocal. And most importantly, not nauseous! She was awake for a few hours. Rolling around on the floor, being super vocal and kooky. Then the nurse moved her to her chair and POOF asleep again! She slept until the nurse left and then a couple hours after, waking up around 7pm or so. She was awake and spunky til Mike carried her up to bed. Daddy is always able to get Reagan to sleep. Hoping she stays that way. I'm so exhausted.

Saturday, November 11, 2017

Miserable crying to miserable nausea

Thank God our Monday nurse had asked about picking up this morning. I spent the majority of the night last night just counting down the hours until she would get here. It was ROUGH. Such an awful night. She had to have her arm restraints on most of the day because she was gnashing her teeth and biting herself (which of course only made her more angry). She was still very miserable today, but crying less. We were even able to take her restraints off this afternoon. And now that she wasn't crying as much, she had time to dedicate to being nauseous. Ugh. Lots and lots of gagging and retching. Lots. We haven't seen nausea like this in a while (certainly not since starting this new formula). Only this nausea seemed to not be quite like other nausea we've dealt with. I tried venting her tummy multiple times today and nothing. Usually when she's having her nausea spells, liquid just pours out of her vent. Not today. It really seemed to be maybe more reflux related. She was having these episodes where she'd gag and then arch up out of her chair nearly busting through her harness! It reminds me of episodes I read about called Sandifer syndrome. Patients, usually babies, but also kids have reflux episodes that look almost like seizures. That's what these looked like. During one of these episodes I was trying to get her settled back into her chair and CHOMP she bit into another finger! Ugh. Arm restraints back on. I tried Zofran to see if it would help but nothing. I wish we had something else to try for the reflux. I hate seeing her like this. Really hoping she'll sleep tonight and wake up tomorrow feeling better. I did switch her over to pedialyte tonight. Hopefully that will help. Prayers for my girl are appreciated. (Oh and by the way, it was our 17th wedding anniversary today! Happy anniversary to us!)

Ryan went to two bday parties this afternoon! Welcome to kindergarten! He had fun, but was exhausted and ready to go home.

Friday, November 10, 2017

Very, very bad day

It was rough trying to get Reagan to bed last night, but she finally fell asleep with the help of Ibuprofen (nothing else was working) and then slept several hours. She woke up early crying and that set the tone for the entire day. It was an awful day (and of course we were also nurseless today). She was miserable every waking moment. Medicines weren't working for more than minutes at a time. I felt pretty helpless. And stressed. We were both super stressed. It was a loooooooong day. Then tonight when changing her pjs, she chomped right into one of her fingers. Ugh. That's precisely why I've kept restraints on her all day. Take them off for seconds to change her and chomp! Ugh. Praying tomorrow will be better. Tonight is not looking good and I'm still so so tired.



A few moments of calm tonight. Even super stressed, she's still so beautiful!


Thursday, November 9, 2017

Exhausted, serious, and then tears

Day 4 and still no sleep. I'm exhausted. She's got to be exhausted! Still very tense today. Very serious. I did manage to get one little teeny tiny half smile out of her, but only that one. And that was it. The rest of the day she was super serious. Only one therapy today, OT. She was maybe a little less tense in her body, but still not the easiest client to work with. Tonight there was a definitely shift and she went over the edge. She got increasingly vocal and her movement picked up exponentially. Lots of chorea (arms and legs flailing). She eventually broke into tears. It's gonna be another loooong night. Please keep my girl in your prayers. This is looking like a bad day...

Wednesday, November 8, 2017

No smiles and no sleep

Reagan still did not sleep last night. That's 3 days so far. Poor girl. She's been even more serious today. Still very tense in her body. She's been super into her hands which was challenging during speech. Hard to focus on anything else when all she wants is her hand. She powered through though and her therapist tried to make the best of it. PT came and tried to work out some of the tension. I'm sure it was a workout for the both of them! Reagan was pretty calm and quiet most of the day...just TENSE. No smiles and we tried hard. Nada. This girl. She needs to loosen up...and SLEEP! Please keep her in your prayers!




Took Ryan to the Aquarium today after school. This one stingray was just too funny! It wouldn't move. He just stayed there with his nose out of the water begging for food!






Tuesday, November 7, 2017

Not so smiley anymore

Reagan had a good day today. Still not sleeping at night, but not as loud and vocal as the night before so at least we slept a little better. She's been a little more serious today. Body is a little more tense. Not the super silly girl from yesterday. She had OT this afternoon and that increased tone presented quite a challenge for her therapist. No doubt she was worn out by the time she was finished, fighting this girl the entire time! Reagan is a different girl every day. Like a box of chocolates, you never know what you're going to get! Always a challenge for her nurses and her therapists. After OT, she had school. We weren't sure if she'd even tolerate being in her chair, but she did OK and tolerated school just fine as well. She did start holding her urine a little this afternoon and needed help going. I guess that goes along with the increase in tone, but I still don't like seeing it. Hoping we're not headed the wrong direction.

Monday, November 6, 2017

Goofy girl

Reagan was up the entire night laughing. All night long. Seriously. She's been still a bit goofy today, no where near the laughs of yesterday/last night. She had speech this morning and to my surprise, she was very much into her hands (she seemed very still this morning). It was hard to keep her attention, she was so focused on those fingers. After speech, we headed over to a orthotic appointment. Her PT noticed a few weeks ago that she was getting pretty close to the edge of her AFO and that it was probably time for new ones. So today we went and she got casted. Probably not the best day for it as she was def more tense than previous days, but we made it work. It was a little messy and noisy (she's not particularly fond of the saw they use to cut the casts off), but she made it through and she'll have some new butterfly AFOs to show for it. No school or PT today, so the rest of the afternoon she just took it easy. We were supposed to have her evaluation for hippo therapy this Wednesday, but it's looking like a cool front is going to come through on that day and it's going to be cold and rainy, so I think we may have to reschedule. :(


Sunday, November 5, 2017

So silly

Both kiddos were up and at em early this morning. I'm sure the time change is partially to blame. Reagan was in one of those kooky sort of vocal moods where I just don't think she slept much anyway. Ryan was up by 5:30am and not wanting to go back so sleep. Thankfully both kiddos were cooperative and let me lay back down for a bit while they watched cartoons...but not for long. Reagan has been very laughy today. This morning while I was sitting on the floor with her I noticed she turned to the left, her body stiffened a little, and she was fixed. It was about 10am and lasted for a minute or so. Ugh. Not a fan of this. Again I noticed she could respond to me before she came all of the way out of it (she laughed but her eyes/head was still fixed to the left). She was fine afterward and went right back to her happy self. She literally laughed the day away today! She was a little kooky, but mostly just hysterically laughy! Hoping for a good week this week!

Saturday, November 4, 2017

Vocal but good

Reagan was super vocal last night. Not much sleep had by any of us. She was so vocal, I thought a few times that she was getting upset, but she wasn't. Just a little kooky. I think she dozed off and on, but she was up a lot. I was up early this morning to go to my niece's state cross country meet. She finished with a new PR and first for her team, so we were all very proud of her! Mike stayed home with Ryan and we had our Monday nurse picking up this morning, so the kids were covered. I got home and then Mike went to play golf with my dad. Reagan's been in a good mood today. Easy going, still vocal, and lots of fingers in the mouth (with super thick spit). She's been pretty precious though. Super snuggly when I pick her up and hold her. When she can't have her hands in her mouth, her tongue wants to hang out. Not sure what that's about...silly girl.


Friday, November 3, 2017

Super sweet but a little off

Reagan was awake and vocal a little earlier than I would have liked today. She was super sweet and darling though. We did observe a stiffening and head turn to the left this morning when we were chatting beside her. Ugh. Damn seizures. She was good afterward and had a good rest of the day. Just laid back, no therapies, her Tues nurse filled in til 2pm today. She did seem a little neurologically off today though. Eye sensitivity. Around 5pm I was downstairs when I heard her make a weird noise. A grunting sort of noise over and over again. Not sure what that was about. I rushed up the stairs and found her extending in her chair and a little foamy at the mouth, so I immediately picked her up and held her. She was super sweaty. She stopped making the stressed out noises and fell asleep in my arms. Eventually I was able to lay her down and she stayed asleep (for a little while anyway). She woke up and I gave her a bath and she was fine. She was awake and rolly the rest of the night. Great mood. Super laid back. No idea what that was about. Hoping for a good weekend for my girl!
(Ryan, on the other hand, had a horrible day/week at school. Aggressive behaviors: pushing, biting, taking toys...not good. Full moon maybe? Ugh.)



Thursday, November 2, 2017

Night out

Reagan had another good day today. She's definitely had a little more tone today, but still in good spirits. She had a morning appointment with urology. We didn't really have much to report, but figured we should go ahead and go since I've already rescheduled several times. Even though she's still having some holding, we've been able to get her to go with the "warm water method" and haven't had to resort to cathing in a very long time (thank God)! Then we headed home and got back just in time for OT. Her therapist worked with her downstairs and she did well. I baked Mike a birthday cake and then took Ryan to speech. Mike came home and we went out to 6th street to listen to some live music. Our neighbor from Houston has a son that plays here in Austin and we were able to go and watch him. He was excellent and we had a great time. So glad we were able to get out (thanks to our Thursday night nurse and Grandpa)!






Wednesday, November 1, 2017

Horseback riding therapy

Reagan had another good day today. She had speech and PT this morning and even got up in her stander for a bit. I went with Grandma to pick up her new afghan puppy and then let Reagan check her out a little. Pretty cute. Grandma then headed home and we took Reagan to Open my World, a theraputic riding center to see about enrolling her in hippotherapy. Her little friend Carley has been taking lessons there for years, so we thought we'd check it out. Carley just so happened to be finishing up with her lesson when we got there, so we were able to watch and then spend a few minutes with her and her mom. Then we just went over the pamphlet and scheduled an evaluation for next week. They will probably do this with a rider sitting behind Reagan to give her support (hold her on) and volunteers on each side of her. Reagan seemed to enjoy our time there, so I think she'll really enjoy getting out and doing this once a week (and hopefully she'll improve her core strength while doing it). With the weather finally getting more tolerable, I think it should be a nice little activity to do with her this time of the year (not so sure about summer, but def winter/spring). We'll see how it goes next week! Today is Mike's birthday and although we had no big plans to celebrate (since he had a business dinner tonight), we did celebrate it with a WORLD SERIES WIN BY THE HOUSTON ASTROS!!! So excited!!