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.