Friday, March 31, 2017

Sleep ALL day

Reagan slept the whole day today. She was OUT. Her nurse finally moved her from her bed around noon because she still hadn't peed. Only a few drops of warm water and she went no problem...and then she just kept on sleeping. ALL DAY. Her nurse helped her go one more time at 5:30pm and again it only took a few drops of warm water and she went. Never even cracked her eyes. It wasn't until right around 7pm that I heard her making some noises. I went in to find her wide eyed and seemingly wide awake! Mike brought her downstairs and I held her for a while. She seemed very content and alert (so nice to see her out of the stupor she's been in the last several days...we did lower her seizure med back down to her original dose). She was adorable. And then she dozed back off. And was OUT. We moved her to the spare bedroom and she occasionally would stretch and yawn, but she never opened her eyes again. Sweet girl. Nothing makes me happier than seeing my girl sleeping peacefully.

Thursday, March 30, 2017

Serious and still zoned out (and the toy is OUT)

Reagan woke up early this morning...maybe she heard me and Ryan leaving? We left the house at 5:15am for a 6am arrival to the surgery center and Mike said Reagan was awake before we even left. She was very zoned out and still today. And VERY serious. I'm not a fan of this medication increase. I put a call in to her neurologist yesterday but today we went down a little on the dosage and I think we should just go back down altogether. Ryan's foreign body removal went very smoothly today. The anesthesiologist just gave him gas so he didn't even have to have an iv. They skipped the versed this go round and he willingly walked back with them (they did lure him with a toy, but whatever works). I was only in the postop area for a short bit when the doctor came in and handed me a urine cup. At first I was really confused, but then I realized the little purple toy piece was in it! He said Ryan did great and they would be bringing him out shortly. His left ear (that had blood in it yesterday), was infected due to a dislodged tube so they removed it and we'll have to give him drops for the next week. The right ear was fine. No damage done. Ear drum looked fine. Whew! What an ordeal! Seriously. How many thousands of dollars did this end up costing? All because of this stupid little piece of plastic! Oh Ryan. He came into recovery a little woozy but good. Blood on both ears (can't they clean that up while he's sedated) and a little stinky...the infected ear, I guess? We were out of there by 8am. We stopped for pancakes on the way home and I let him stay home from school just so I could keep an eye on him. He seemed fine, but was a little needy/whiney, especially after waking up from a nap this afternoon (he's a terrible waker upper). Reagan was just very serious/groggy the rest of the day. She's been a lot more relaxed in her body today and peeing on her own again today...thank goodness.She had both PT and OT today but she was pretty loosey goosey for both. She's still grinding her teeth a lot and she's been biting on her lower lip most of the day. Her tongue keeps getting stuck to her lip because she's keeping it out more and I guess it's getting dry? I kept wiping her mouth with a wet rag tonight to try to help, but it just kept happening. Poor sweet girl. Hopefully she can sleep tonight and wake up feeling much improved tomorrow!

Wednesday, March 29, 2017

Tense and zoned out

Reagan was awake and still not peeing this morning when her nurse got here. She definitely seemed zoned out and at one point around 8:15am turned her head to the left and her eyes were fixed for 15sec or so. Definitely looked like a seizure. 15min later or so she was doing something suspect with her eyes. A lot of blinking. Her nurse called me up but by the time I got upstairs, she was no longer doing it. She had speech at 10 and was still a little zoned out. She was responding to her therapist, but she was very lethargic and not really wanting to look up. The rest of the day she took it easy. She's definitely been more on the serious side today. Body still very tense, but thankfully I was able to get some pees out of her with the warm water and we once again have avoided cathing. Hoping Mike can get her to sleep tonight. Tomorrow is going to be an early one, taking Ryan in to get that toy out of his ear! Of course he came home from school today with blood in his other ear, so no clue what that's about. Thankfully they can check it out tomorrow. Poor guy.

Tuesday, March 28, 2017


Reagan has had a busy day today. She's been super crunchy and tense in her body. Holding her pees again but thankfully we were able to get her to go a few times today using warm water. I really don't want to have to cath her. She was still pretty spunky this morning but became a little more relaxed after her increased dosage of clobazam. She tolerated all of her therapies /(PT, OT, and school), but was still very tense in her body. Lots of hand in the mouth. Tonight she kept grinding her teeth, so I picked her up to hold her and then I heard actual crunching of her teeth! The next thing I knew, she spit out a crown in my hand! She lost her upper first molar and the new tooth underneath is already completely out! AND the upper canine beside it is also loose (and you can see the tooth underneath)! That's three loose/lost teeth in two days! What the heck?!?! Hoping this tense girl can get some sleep tonight! Ryan's ENT appt today was uneventful. The doctor could barely even look into his ear (he was fighting so much) so he made the decision to just remove it under anesthesia (Thursday we think). Great. The saga continues...

Monday, March 27, 2017

Neuro appt and spunky girl

Reagan was up and spunky this morning. She was in a good mood, super smiley, but still very tense and crunchy in her body and no pee. Thankfully she went with the help of some warm water (she actually only went 3x today and only with the warm water method). We had an early morning appt with her neurologist, so we loaded up into the car, dropped Ryan at school and headed in to town. Reagan was chewing on her hand a lot, but there wasn't much we could do about that in the car. Once we got to the drs office, we tried wrapping a blanket around it and that's when we noticed blood. We couldn't really tell where it was coming from. We weren't sure if she bit her lip, or cheek or what. We did our best to keep it out of her mouth the rest of our time there. I spoke to her neurologist about our concerns with her increase in tone and the breakthrough seizures we've been seeing. He's hesitant to make any big medication changes since we know most of this is probably due to her fluctuating hormones. He did suggest going up a tiny bit on her clobazam. She's been on 5mg am/10mg pm for years now which is apparently a pretty low dose. So we're going to try increasing the morning dose up to 10mg as well and see if that helps at all. Not a lot of options. We also discussed medical marijuana and while she doesn't fit the requirements to take it for her seizures (right now they're primarily using to treat drop seizures in Lennox Gastaut patients), he thinks it's something that might really be helpful with her pain/high tone. He's going to consult with her PM&R doctor to see if there are any studies being conducted that she might qualify for. She was a little stressed during the appointment, but she did better once we put her noise cancelling headphones on. She was still pretty kooky/crunchy and putting her hands in her mouth on our drive home. Once home, we looked more closely at her mouth and I thought I saw a possible loose tooth. 15min later, her nurse found a tooth laying on her pillow (her bottom left first molar)! Ha! We didn't even know she had a loose tooth! And in her gums I can see the tiniest hint of her new tooth! Of course, losing a tooth isn't the best time to have your hands in your mouth nonstop (and can cause a lot of bleeding)! Her nurse wrestled with her all afternoon trying to keep them out of her mouth! Reagan probably won that battle. Tonight I put on her heavy duty arm restraints to try to give that mouth a rest. She was super smiley, but fighting me and trying to squirm out of those restraints every chance she got! Tricky little girl. Now we just have to get her spunky butt to sleep!

Sunday, March 26, 2017

A trip to the ER for Ryan

Reagan slept well but was up and vocal early this morning. She's been vocal all day today. A little more tense in her body, I'm glad that she's still peeing on her own. We had a nurse today which turned out to be a huge blessing as we don't actually have a Sunday nurse right now. The reason it was such a blessing? Ryan put a little piece of a littlest petshop toy (I guess there's a reason they call them that) into his EAR! Ugh. By the time he told us (probably only 5min or so after it happened), he had already pushed it far enough back with his finger that we couldn't easily get it out. We tried for hours to get it out ourselves. We tried flushing it out with saline, tweezers, an ear loop, we even tried letting him jump in the pool to see if that would force it out! Nada. Not to mention just trying to get him to hold still! Both of our children are exceptionally strong. Like super human strength. So holding him down while trying to extract something from his ear is quite the challenge. And we failed. So we loaded him up and headed to the ER. Where we waited and waited, despite the falsely advertised wait time of 7min! They eventually got us back into a room after a little more than an hour in the waiting room (and Mike complaining), but then we just waited in the room. At least there was a television for him to watch, as he was starting to get pretty antsy in the waiting room. They eventually came in and gave him some Versed and Fentanyl up the nose. He loved that. Lots of gagging and spitting out fluid. Not sure if half the medicine came out that way or not. He definitely got drowsy afterward, but never really fell asleep. They came back in about 45min later and attempted to get the piece out. Unfortunately they didn't really have a successful plan. 4 of us holding him down while the nurse practitioner tried to pull it out with long forceps! This made me very nervous. Because inspite the sedative, Ryan is a fighter! They eventually gave up. After traumatizing Ryan, his ear, and us! Ugh. Who knows how much this little trip will cost, nevermind the entire day wasted and trauma we all experienced! So they gave us a prescription for antibiotic drops for his ear and sent us on our way. Call our ENT in the morning. They are much better equipped to perform this extraction. Thanks. That information would have been appreciated several HOURS AGO! Ugh. On a good note, it doesn't seem to be bothering him anymore. I guess it's pushed far enough up there that he can't really feel it anymore. God help us when they try to remove this thing in the ENT's office. I honestly feel like he needs general anesthesia, because that oral sedation did nothing for him! The only good thing about it. It causes a bit of amnesia, so hopefully he won't remember much of the trauma from today! He, of course, was all good after we went to Target and got his promised "yucky shopkins" (what he calls the grossery gang toys). Reagan was good, but kooky while we were gone. She's been pretty vocal/kooky all night. A little sensitive and super crunchy. Hoping she'll settle down and go to sleep tonight. We all need some rest after today.

Saturday, March 25, 2017

Squirmy Saturday

Reagan slept well last night and woke up this morning a little spunky. She did not seem to want to be in her chair, she immediately started fussing, but she was much better on the floor. She's actually preferred the floor all day today. Very happy squirming and rolling around. She's had a pretty good day. Still sensitive, we've had a few tears and fat lips, but she was easily turned around. Mike played in a golf tournament most of the afternoon, so it was just me and the kiddos. Thankfully they both behaved themselves for the most part. Tonight Reagan was extra squirmy. Making her way across the floor in no time. We had to keep moving her back up onto her mat/pillow over and over again. Silly girl.

This girl has been loving her little snake, so I bought her this huge one and she seems to like it too!

Friday, March 24, 2017


Reagan slept in a little this morning but woke up on the serious side. She's been very emotional today. Lots of big crocodile tears. Holding her breath. Just plain miserable. Not really sure what's going on. It seems like maybe it's a "bad day", but who knows. Her nurse gave her pain meds which didn't really seem to work. She'd doze off for a bit and then wake up crying again. She did seem to want to be held and she fell asleep a few times in her nurse's arms but would wake the second she tried to lay her back down. I was finally able to get her down with the help of the weighted blanket. Sweet girl. She slept for several hours and then woke up around 5:30pm. She just laid there, very still with big eyes. When her nurse left, I went up with her and she stayed awake. Very quiet but calm. Lots of teeth grinding but calm. The only thing she seemed sensitive to was music on tv. She only had one more outburst of tears all night and it was from some music on a commercial! Hoping this was the worst of it and she feels better tomorrow. Please keep her in your prayers!

Thursday, March 23, 2017

Eye appt and Ryan the model

Reagan slept well last night and then kept sleeping this morning! I wasn't sure how she was going to wake up. Her ophthalmology appt was at 10:45am, so her nurse had to wake her up around 9:45am to get her dressed. She was surprisingly calm and content. We loaded up and headed to her appointment. And waited. And waited. And waited. Her eyes had to be dilated, but they were just running behind plain and simple. The waiting room there is tiny and packed. There was a kid banging toys, a baby crying, and then another kid blasting music! Reagan tolerated it all (better than I did)! Reagan was a pro with the actual appt as well. The dr prying her eyes open and holding those little lenses up to her eyes. Everything looks good. No glasses needed at this time. As she continues to grow (and so do her eyes) she may need glasses at some point to help her with her distance vision, but for now she's still good. We made it just in time for OT and to pick up Ryan. Ugh. Another day misbehaving at school. He really has been a challenge lately. After Christmas break and after spring break...both of those transitions back to school have been difficult. And by difficult, I mean HE'S been difficult. He's so cute. How can he be such a trouble maker? Today they released the new Kelly's Kids spring collection with Ryan as the model for the boys clothes! So exciting! The rest of Reagan's day went by without a hitch. She's been a little congested the last few days. Not sure if that's allergies or what. Lots of pollen in the air right now. I've also noticed some teeth grinding. :/ This girl!

Wednesday, March 22, 2017

So laughy

Reagan woke up laughing this morning and has been laughing ever since! Very silly today. Not sure what the reason is for the laughs, sometimes they sound a little on edge/tense, but she's held it together. This morning she had speech and did OK with that. It can be hard to keep her focus when she's vocal like this. I do wonder if she's vocal because she wants to tell us something...but can't. I busted out her PODD and tried asking her some questions. Didn't get a huge response, but she did vocalize when I got to a few things so I took that as I was on the right track and she ended up on wanting a drink so I gave her some water on a swab. Not sure that was really what she was trying to convey, but we tried. Lots of gas today, which could be part of the reason she's been so vocal. She had school this afternoon and her teacher brought a video of her class at school singing her happy birthday!! SO sweet! I love it. Unfortunately, Reagan responded the way she usually does to the happy birthday song and did NOT enjoy it. Oh well. It's the thought that counts! She did OK with school/speech and then we got in a quick bath before her nurse left. She's been super spitty today. First soaking her stuffed pony she got for her birthday and then her hair/pants after her bath (she puts her hand in her mouth and then down on her lap...over and over and over again)! Tonight she continued to be vocal/laughy until she finally dozed off. Not sure where she's headed but hoping she holds it together as we've got her yearly ophthalmology appt tomorrow (which is not easy to reschedule)!
By the way...Texas Children's Hospital did a blog post about Reagan today! Here's the link!

Loving all of these timehop bday pics! Had to post some more of this precious girl...

Tuesday, March 21, 2017

Happy Birthday sweet girl

Today is my girl's 10th birthday! Hard to believe she's already 10! Sweet girl. She's had a good day today. Busy, but good. This morning we had a nurse orienting and she was very vocal but patient with all of the talking. Then at noon she had PT and did well with that. At 1pm the DME rep came with new knee pads for her stander (with air cushions to hopefully prevent bruising on those delicate knees) so we got her up in her stander for a while. She was still in her stander when OT got here with a beautiful butterfly balloon for Reagan. She did well with that and then was done with therapies for the day. She took it easy the rest of the afternoon. Tonight we sang happy birthday to her and I gave her some icing. She was a little vocal about it, which I interpreted as her not really wanting it. It did make her super spitty. Afterward, we watched Beauty and the Beast with her brother (it was his first time ever seeing it)'s one of her favorites. She watched the entire movie, music and all, no problem! When I took her out of her chair, I noticed a stink, she had gone on her own! That doesn't happen often but she did it both yesterday and today! She seemed to feel better after that and the next thing I knew she was fast asleep! Sweet birthday girl! Love her SO much!!

Monday, March 20, 2017

Great day

Reagan had a great day today. She slept well last night and woke up this morning in a great mood. Grandma was still here this morning, so of course she was happy about that. She had speech and school today and she did well with both. Her speech therapist was so excited because while using the PODD on her computer two separate times she said "I read" using eyegaze (when her therapist was talking to her about a book)! She also had two poos (on her own) today! It's been days since she's gone (because her body has been so tense), so I'm just happy that she finally went and even happier that she did it on her own!! She had school this afternoon and did great with that as well. She's just been in a really great,content mood today. Hoping she saves some of this awesomeness for her birthday tomorrow!

Some sweet timehops from this day in history...

Sunday, March 19, 2017

A SUPER party for a super boy and girl!

Reagan slept well last night and then just kept sleeping this morning. We weren't really sure what we were going to get when she finally woke up! We had tons to do this morning, so her sleeping in was really a blessing. She did eventually wake up around noon...with a cry! We rushed upstairs to find her completely soaked...thank God! She settled down the second we got her out and cleaned up! Sweet girl. She was actually very calm and content. We brought her downstairs where she promptly fell back to sleep! She was still asleep at 2pm when the party started. It was a "super" party and everyone had a great time. We had a bouncy house and a balloon animal artist (her brother's obsession). Reagan continued to sleep until 3:15pm when I changed her into her party dress. She wanted to fall back asleep but we made her stay awake! The balloon artist made her a pretty butterfly balloon and then we sang happy birthday and cut the cake! After the last people left, we took her into the bouncy house for a bit. She seemed to enjoy it, even with her brother bouncing around like a maniac! After coming back in and laying her down, she dozed right back off. Precious girl. Everyone is exhausted but it was a great day. And her being sleepy was probably the best case scenario for her. She limited her exposure to germs and was extra laid back and calm when awake! Win win!