Here we go again with another weekly update. Last week ended on a sour note with a bad day on Friday. Thankfully she was much improved for the weekend but not without some damage. That little thumb that had a crack on it earlier in the week had healed only to get a bite on her bad day. So needless to say, she's had an arm restraint most of the time since then. Poor hand. It heals up only to be assaulted once again. Reagan has had a good week. She had speech Monday and today and did really well. On Monday when her therapist was done she went to the main menu of her igaze and asked her if she wanted to tell her anything. Reagan went to manners and told her thank you and good bye (using her eyes)!!! What a smart/sweet girl!! She had OT yesterday, she's been kinda flopsy mopsy for the last several days so it wasn't her best session but she was good. Reagan's nurse mentioned yesterday how low tone she seemed and was worried that it might be the calm before the storm. Well she was right. Last night Reagan escalated and went from content and giggly on the floor to laughing and flailing and having a very stressed look on her face.We were able to get her to sleep but we were definitely worried what today might hold. She's actually slept most of the day today but something is definitely off/bothering her. She was awake from 10-11 today and did OK with speech, but then promptly fell back to sleep. Even in her sleep though she was fussing and very restless. She did wake several more times today and was a bit more irritable/crying. Thankfully she would doze back off with medication. Hoping she can sleep the bad away. Sweet girl. I sure hope this is short lived! She just had a bad day last Friday...this is WAY too soon for another. Ugh.
We did go to Ryan's Valentines class party today. He had a good day!
Wednesday, February 14, 2018
Thursday, February 8, 2018
So this post will be a weekly update of sorts. Reagan's weekend was good and she's had a nice week as well! She was a little more vocal/kooky at the beginning of the week but she's definitely mellowed out in the last two days or so. Now she's more just precious! Super smiley and cooing away. Such a darling girl! Our nurse called out yesterday and today, so that's added some stress, but we've managed to juggle everything around and get a few hours covered so we wouldn't have to miss any appts. Reagan did have a seizure on Monday...I had just been thinking it had been a while since we had seen one. There was nothing that would've predicted it, it was quite unexpected, but thankfully it was a short maybe 30sec one and then she was back to normal. We still don't have her horseback riding (hippotherapy) up and running just yet, but that should happen next week or the following week. The weather has been quite yuck, cold and rainy, lately so it's not like it would've been the best horse back riding weather anyway! As the day has gone on today, Reagan has gotten increasingly tense in her body. She's holding her pees, having temperature dysregulation issues (cold/clammy hands, feet, and legs), and even the one red ear! She's still pretty content...she just seems a little off. More quiet and sensitive. Tonight she had a huge startle that then seemed to trigger a seizure with a head turn and eye blinking. Ugh. I thought we were seeing less of those. Hopefully she can continue having good days. Sweet girl.
Friday, February 2, 2018
Our day started with a 6am call from the nursing agency. Never a good sign. Our nurse, who was actually supposed to stay late tonight because Ryan has a birthday party to attend, called in sick. UGH. So this led to me having to cancel my 2-3hr appt with Reagan's MDCP case worker (because obviously I can't answer nonstop medical questions while attending to Reagan's needs all morning), I never made it to the grocery store (I had a list a mile long), my dad (God bless him) had to go pick up Ryan, and Mike had to come home early from work so I could take Ryan to his bday party!!! What a mess. On the upside, I got to spend the entire day with a ridiculously wonderful super sweet super calm and relaxed little girl!!! Just cooing and laughing...so so SO precious!!!
Thursday, February 1, 2018
Reagan had a good day today. She's still pretty congested. Her nurse gave her saline and suctioned out her nose a few times today. She's been in a good mood though. She had OT this afternoon. She did well for that. We discussed new goals (it's almost that time again). Every time we have to resubmit, it always makes me nervous. Her OT is a pro though and does the best job possible in explaining everything and why we need to continue at her current 2x a week. I do know, the older they get, the more insurance just wants to give up on them, so the harder the fight. But we will continue to fight the good fight for our girl. She deserves nothing less.
Wednesday, January 31, 2018
Whew! So happy to be done with that. Reagan woke up this morning feeling SO much better. Very calm. We did notice a big red mark just above her bottom. We think it must've been from her being her her chair so much the other night and then laying flat on her back the entire night last night. Poor girl, she just can't catch a break. She has such sensitive skin. We've been keeping her on her side all day today. The redness has definitely started to fade but it's not gone yet. She had a good day today. She had OT and school/vision. She wasn't super interactive today, but we'll take it. Just so happy to see her calm and content again.
Monday, January 29, 2018
Reagan slept in a little this morning and woke up very serious but OK (and no longer nauseous)! She wasn't awake for long before she dozed back off (still in her chair). We didn't dare mess with her, we were just hoping she'd wake back up OK. That did not happen. She woke up just after noon and the crying started. We moved her to the floor, got the first pee of the day from her, and gave her some oxycodone. She dozed back off. She was up and down the rest of the afternoon (crying when awake), but thankfully she didn't require any more medicine. Just some consoling and she'd fall back to sleep. We kept her on her mat on the floor, happy that she was finally able to get out of her chair and lay down. Really hoping she can sleep tonight, but it doesn't look good. My poor sweet girl. Hoping she has a much better day tomorrow.
Sunday, January 28, 2018
Reagan was OK this morning, a little serious but OK. But she started getting nauseous as the day went on. Tonight it was really bad. I think it's being caused by sinus drainage, it's more of a choking gag than a true nausea. Poor thing. It's actually even harder to watch. It's like she's actually choking/not breathing when she does it. Suctioning helped (making me think my drainage theory is right). We did go ahead and switch her to just pediatlyte for tonight. Then we put her in her tomato chair, gave her clonidine early, and are praying she is somehow able to sleep it off!