Monday, April 24, 2017

No school

Reagan did NOT sleep much last night. She didn't fall asleep until just before 1am and then by 2am I already heard her making noise. I had to get up early to run the EEG box back up to the hospital and then back home so Mike could go to work. Reagan was already up (of course) but Ryan was still sleeping in. No school today and no nurse. Today was some sort of bad weather day that they ended up not needing and Reagan's nurse requested the day off a long time ago. So it was me and both kiddos, which was fine with Reagan now feeling better, but I'm still happy for Ryan to go back to school tomorrow! Between him being sick last week and Reagan's nausea and EEG this weekend, I've gotten nothing accomplished for a while! Reagan has been good all day. Very laid back and easy going. She had speech this morning and did well with that. Tonight she was a little spitty/chokey. Not sure what that's about, just hoping she's able to fall asleep and sleep that off. I know she must be exhausted, it was a long weekend. Praying she turns it around and has a great week!

Ryan trying to convince me that he needs to eat my energy chews!

Sunday, April 23, 2017

So so much better

Reagan slept off and on last night. She woke up a few times fussing and chokey but went back to sleep fairly easily. Around 4am she woke up and Mike got up with her and she was precious. Not nauseous at all. And when she woke up for good...all was good. She was smiley. No more nausea. Just as I have no idea what caused it, I also have no idea what made it go away. I'm just SO glad it's gone and my girl seems to be in such great spirits! Reagan has been super precious today. Very talkative and oh so smiley and sweet. I ended up taking her leads off around noon today. Several leads had already come off. She may have had an "event" this morning around 10:15am. I was holding her but her arm went out and her head turned sharply to the left but I couldn't really see her eyes to know for sure. It only lasted 15sec or so and then she turned back the other way. I hit the button, so I guess we'll find out. My only concern is whether or not the leads were working properly when it happened. We'll see. She had lots of wet diapers today but I did have to help her have a poo (she still wouldn't go on her own, even after an enema). Poor girl. It's been a while. I did drain her tummy one more time today and got some very yellow bile out. Not sure what's going on with that tummy. I noticed some redness around her button tonight when I gave her a bath. Definitely think it was a reaction to some leaked bile. Poor thing. Can't catch a break. All day she was very laid back and happy. Tonight she got a little more vocal and getting her to sleep was quite the task. It wasn't until 1am or so that she finally dozed off. Not super confident in sleep tonight.

Saturday, April 22, 2017

I HATE nausea

Well...Ryan slept last night. Reagan was up and choking at 4am. I ran in to find she had pulled the wrap off her head and thrown up in bed. Ugh. Not good. We moved her to her therapy room and put her in her tomato chair. She was very agitated and stressed. We had to put an arm restraint on her left hand because it was up in her hair nonstop. The electrode just above her left ear had been pulled off so I had to restick it and rewrap her head. Hopefully it still works. She was pretty agitated but eventually went back to sleep with the help of medicine. She continued sleeping all morning. Waking up just long enough to fuss and flail (and for me to run up the stairs), only to doze right back off. She did wake up for a bit around 10:15am and threw up again. Double ugh. What is going on?!?! We haven't seen nausea in FOREVER. Hoping it's just related to congestion or whatever this junk is that we've all got. We really haven't seen any symptoms in Reagan except congestion. Hoping that's the extent of hers because we've all got horrible coughs that I really don't want her to get. I decided to go ahead and try to drain her tummy. Sometimes when she gets nauseous, her tummy is holding a lot of fluid (I'm guessing because her gut is shutting down and not functioning properly). Sure enough, tons of fluid drained out of her g-tube. It had a slight green tinge to it (almost limeade looking), bile I guess? Poor girl. No wonder she's nauseous. What the heck!?! She dozed back off, continuing to wake up for small bursts, fuss and then go immediately back to sleep. Finally a little after noon she woke up and I rushed upstairs determined to get a pee out of her. I got some warm water and went to check her (she had already dozed back off) and thankfully she had finally gone on her own! Eventually I did have to change her and that didn't go too well. I was hoping she could spend some time on the floor, to get out of her chair for a while, but she got super nauseous again. So I did it as fast as I could and got her back up into her chair. She got super spitty but thankfully didn't throw up. I did take her arm restraint off and put her arms under a weighted blanket to give her a break from that. She continued to sleep the entire day/night. Waking up just long enough to fuss and gag/throw up and then go back to sleep. It's been brutal. The EEG combined with this relentless nausea. Ugh. I have no idea what's causing this...I just want it to stop! Big prayers needed for my girl. I switching her over to pedialyte tonight. Give her gut a rest. Poor sweet girl. Hoping she wakes up feeling better tomorrow.

Friday, April 21, 2017

Seizures and weekend EEG

Ryan slept last night until 5am. Then he was up. He came to our bed and didn't really want to go back to sleep. Not until 7am or so and then he was out. Gotta keep this boy out of our bed! I had checked on Reagan at 5 and she was awake and sideways in her bed again. I moved her and tucked her back in, and I think she went back to sleep, at least in spurts. At 9:15am this morning her nurse saw her have another seizure. Head turned completely to the left, eyes closed, and left arm stiffened out. Lasted about 15 sec. At 10:40am she had another one. Arms crossed straight out and head/eyes fixed to the right. WTH?!?! This is crazy. I immediately put in a call to the EEG scheduler. They had contacted me a few weeks ago, but I told them that it was so hard to predict when she might have one. Well, today seemed like as good a day as ever. They just so happened to have an opening and they were able to get quick insurance approval. So at 2pm we headed up to Dell to get her hooked up (she'll wear the leads all weekend at home and then they'll remove them at 8am Mon morning). We didn't see any more definite seizures but as I put her into the car and while holding her hands down as they were putting the leads on, she was very zoned out and stiffening her arms occasionally (but no head turn). Unfortunately, none of that was recorded. She looked very tired afterward. We thought she would doze off in the car, but she never did. She waited til we got home. She dozed off and on the rest of the night. A little restless. Lots of teeth grinding and lip smacking/swallowing. Definitely seems nauseous or gaggy. Not sure if that's because she's a little congested (and maybe having drainage down her throat), if it's the gauze wrapped around her head and neck, or because she's been laying down unelevated for a while. No clue. I don't like it though. Her head wrap has already slid up and off her head a few times so I've had to rewrap it. Who knows how long we'll make it with everything intact. Hopefully long enough to get some information from this pain in the butt EEG. Mike transferred her to her bed and she's asleep for now. Hoping she stays that way.

Thursday, April 20, 2017


Reagan woke up tense this morning and laying completely sideways in her bed. I'm not sure how well she slept but it had to be better than us. Ryan woke at 2am crying and burning up. He won't take any medicine so we had to put him in the tub to try to bring his temp down. Then we brought him back to our bed. BIG mistake. This kid is impossible to sleep with. He was all over the bed. Of course, he decides to finally sleep hard after 8. Reagan woke up super crunchy and grinding her teeth, but settled down as the day went on. She had PT and OT this afternoon and did well with both. During OT the DME lady came out and trialed some different headrests with her new wheelchair. I think we found a winner. Despite being crunchy and high tone today, she looked pretty good sitting up in her wheelchair. It's amazing how much her head control has improved over the last several years. Tonight I kept her upstairs to prevent exposure to her brother's germs. I took him to the dr this morning since he was still running a fever and minutes before we had to leave, he projectile vomited all over the kitchen! He's negative for strep and flu so that's good. He's continued to run a fever all day again today. We were able to bring it down tonight with a swim in the cold pool. He enjoyed himself and his fever came down to 99, the lowest it's been in days. Reagan peed without needing to be cathed again today, so that's good. She still needed help going  (with warm water), but at least she went! Tonight after I helped her go, she stiffened her legs out and then turned her head to the right. Ugh. Darn seizures. This puberty thing sucks. Hoping everyone can get some sleep tonight.

Wednesday, April 19, 2017

Tense and holding

Reagan slept well last night and woke up calm and content this morning. Definitely more tense in her body and not quite as smiley (but still little smiles). She didn't have a wet diaper but her nurse was eventually able to get her to go using warm water. She had speech this morning. Therapy was a little more challenging today with her so crunchy. She was also playing possum, acting like she was falling asleep. It worked, her therapist left a little early and then Reagan perked right back up. There was obviously some potential for sleepiness because she dozed off even after getting an enema. Of course she didn't poo. Ugh. This girl. She has not been going much lately. I'm afraid things are going to start backing up in there. She had one more wet diaper with help but then would not go at all this afternoon. Her nurse finally had to cath her at 6pm before leaving because we just couldn't get her to go and were afraid she might continue holding all night. We got some out but not much. At least we were able to give her some relief. Hopefully by tomorrow she'll be going on her own again. It's been quite a while since we've actually had to cath her, I was hoping we could avoid that. Poor Ryan has been running a fever all day today. He's been pretty miserable. A warm bath helped to bring down his temp a little, but he's really resisting taking any meds. When I try to sneak them in, he somehow senses it and gags! Ugh. It's been a long day. Hoping he sleeps tonight.

Tuesday, April 18, 2017

Go to school

Reagan slept well last night and woke up with smiles again this morning. Yeah! Operation "Go to School" in place! Her teacher was great, scrambling to get everything set up quickly. We got to the school just before 11 and went up to her homebound teacher's room. She already had three little girls from Reagan's class and several teachers waiting in there to meet her! Everyone was quite excited to finally meet Reagan...her homebound teacher must talk about her a lot. Everybody loves Reagan (like Raymond)! Two of the three girls actually still have Reagan's pic that was on the Valentine we handed out to her class. So sweet! They talked with her, asked questions about her favorite things, and then read her a story along with their teacher. It was really sweet. We'll definitely do this again! We had wanted to drop in and say hi to the whole class, but by the time we finished, they had already left art. So maybe next time! It was a perfect day for it. Reagan did well with all of the talking and even the reading. She had her hand in her mouth a lot, but was very smiley! We came home just in time for a few minutes rest and then PT. She did well with PT at noon and then OT at 1:30. She's just a joy to work with when she's like this! Her OT didn't want to leave! She said it's hard to stop when she's this ON! I can see that. She had a little break and then had school/speech/vision therapy at 3:30. She did well for it all. Afterward she did look a little sleepy, but never dozed off. She eventually got a second wind and was raring to go. She's been a spunky precious girl the rest of the night. Super darling. She did squirm around so much at one point, she popped her tube out. She didn't pull it out, she moved just so so that it was in the unlock position and it just popped right out (leaking formula everywhere). This girl! Hoping we can get her to settle down and get some sleep tonight!
(Sorry for no pictures. I wasn't sure if I could take them at the school. I can't believe I have no picture documentation of these past two days. She's been BEYOND precious. You'll just have to take my word for it. Adorable!) In other news, Ryan spiked a fever tonight. He's had this cough for a couple of weeks and now he spikes a fever?!?! Ugh. Off to attempt to get him to take some ibuprofen. Hoping he gets over this quickly and Reagan can avoid it.

Monday, April 17, 2017

Such a good day (such a good girl)

Reagan slept well but was up and at em early this morning. She's in a great mood, we definitely turned a corner last night. Thank God. We attempted to get her to poo this morning as it's been 4 days since the last time she went. Only got a couple little hard pellets. Not good. We then did an early bath to try to wash all of the bad off from this weekend. It must've worked, because WOW she's been precious today! She had speech this morning and did really well with that. Lots of intentional nodding in response to questions. She took it easy for a while after speech and then had school this afternoon. Again, it was a great day. Her motor skills were spot on, so the teacher focused on that a lot. Awesome girl. Beyond precious. I didn't even think about it until tonight, but today would've been a perfect day to take her to school. I texted her teacher and asked her if Reagan's still on tomorrow if we could finally come up and visit with some of the kids in her class. She said of course! So we'll see. Hoping for another super terrific day for my girl tomorrow!

Sunday, April 16, 2017

Not so happy Easter

Reagan slept in again this morning, not waking until 11am. She woke up wide eyed, but calm. That didn't last long. Thankfully the tears today were not as frequent. She cried but it was more off and on, instead of nonstop. Not exactly the happy Easter we were hoping for but I guess it could have definitely been worse. Ryan enjoyed his Easter basket, especially the "yucky shopkins" (grossery gang). He also had a blast hunting Easter eggs...especially when he realized there were flipazoos inside. Then we had a Facetime call with the Easter bunny (Grandma), which both kiddos enjoyed. No smiles from Reagan, but she stopped crying just to watch the bunny. As the afternoon went on, she seemed to improve. Still getting agitated when Mommy talks, but calm otherwise. We are even getting some laughs, slightly pathetic laughs, but laughs nonetheless.And a HUGE smile right before bed. Hoping we're done with the bad.

Saturday, April 15, 2017

Lots of tears

Reagan slept in a bit again this morning. When she woke up, she was a wide eyed and serious but calm. We moved her downstairs a little nervous of where she was headed. She was OK, whimpering a little but otherwise OK, that is until about 2pm or so. Then it all fell apart. Lots of tears. We're not sure what's bothering her. Is it a "bad day" and if so, what's causing her discomfort? A few times it seemed it might be related to tummy pains because she'd have gas and then start crying. But many times there were just tears. Poor sweet girl. Pain medicine did seem to help and she'd be able to doze off for a while, but as soon as it would start to wear off...the tears would start back up again. It was quite the miserable day for my girl. I had wanted her to participate in egg dying with her brother, but she was just not up to it today. Hoping for a good night's sleep and better day tomorrow for my girl.