Thursday, November 30, 2017
Reagan woke up crying this morning...it's been a rough day. Thankfully we do have a nurse (one that has only worked here once before, but a nurse) and Reagan has also been responding to her pain meds and sleeping off the bad. When she wakes up, she cries nonstop and is very bitey (she's got BOTH arm restraints on) but it usually only lasts 15-30min and then she falls back to sleep. On a good note, the nausea from yesterday is gone, but that's usually the case. I always say, her body can't do those two things at once. She's either nauseous or crying/bad day (because both together would be unimaginably bad). She hasn't been nearly as sweaty as she was the last couple of days (which is good because she's spent a lot of time in her chair), but her hands and feet are still very cold and clammy. Tonight she has dozed off a couple of times on her own, without any medication, so I'm hoping that means that she's starting to improve. My poor sweet girl. Hoping for sleep and a much better day tomorrow!
Wednesday, November 29, 2017
Reagan slept well last night and woke up this morning SOAKED in sweat. Just as hot as a little furnace...not her temperature...just her body. We took her out of bed (stripped it down), removed her soaked pjs, and immediately gave her a bath (she had a seizure right before her bath, fixing her eyes and her head to the left). We knew she'd probably just sweat herself wet again, but at least we wanted to give her a fresh start to her day. I think it helped to cool her body down a little too. She's been very tense all day. Grinding and clenching her teeth. Kicking her legs around a lot, pulling her hair, shoving her fingers down her throat and making herself gag. She's been gaggy ALL DAY. Which basically meant she had to spend the majority of her day upright in her chair. Not a good position for a hot bodied girl. Ugh. My poor sweetie. She's really only retching when she's not upright, otherwise she's just spitty and doing a lot of mouth movements. I attached her drain this afternoon and was shocked at the amount of fluid that came pouring out. And air. I've drained her tummy multiple times today and most of the time clear fluid comes out. Tonight she was having the episodes where she arches her back and extends her arms and legs out. We saw these once before and thought they were reflux related. Still not sure, we even added the Zantac today, and she still had them. Every 5min or so for 30min+. My poor girl. She goes through so much. Hoping and praying she can sleep tonight and that she wakes up more calm and nausea free.
Tuesday, November 28, 2017
Reagan slept well last night and woke up this morning SO precious. She's been super darling today. Very calm and content. Kicking around a little, but just laid back and adorable. She had a GI appt this morning with her specialist that is moving to Dubai. I'm not exactly sure what's going on with Dell right now, but it seems they are having a hard time keeping their specialists. Not good. This is another specialist we've had since moving here to Austin and another one that has always seemed to genuinely care about Reagan. This was out last appointment with him to kind of go over everything. Make sure we have refills on everything. Talk about our plan of action. He was happy that Reagan has put on a few pounds...she was 59.86lbs today...so essentially 60lbs. She's definitely felt heavier lately. She still looks very slim though, I'm pretty sure she's grown a few inches lately as well. She was great for the appointment. Cool and calm. We were in and out pretty quickly. She wasn't home long before OT came. She had an amazing session with OT. She was following directions, doing exactly as she was told...I kept hearing her therapist call her a rock star! She does love her OT though and seems to respond to her better than anyone. She had school this afternoon. It went OK. Not quite as smoothly as OT, she did let her teacher know she did not like one particular book, but she did alright. One thing we've noticed all day is that her temperature regulation is off. Her body is getting super hot and sweaty, while her feet are ice cold and clammy. This is usually a sign of dysautonomia. Something is off in her autonomic nervous system and things are getting out of whack. Not a good sign. Hoping it's nothing and the good days continue for my girl.
Monday, November 27, 2017
Reagan fell asleep last night and went down fairly easily, but she was up and vocalizing a few hours later. I don't think she got much sleep. She was still quite feisty this morning. We weren't sure what this meant for our trip to Houston this morning, but we were willing to give it a try. We were out of our house and on our way to Houston just after 7am. We made good time and arrived at Texas Children's Hospital by 10:30am this morning. Reagan did surprisingly well with the drive and the appointment itself. The only time she even got a little vocal is when a doctor (not hers) came up behind her and was loudly talking to the nurse who was taking her vitals. Reagan quickly let us know she was NOT a fan! The epileptologist we saw today was actually Reagan's doctor from years past, the one that was treating her when she became seizure free (he had moved to New York and we had moved to Austin...but he just came back)! We were actually calling Houston to make an appt with her current doctor who just switched to TX Children's when I found out that her old neuro had returned, and since Reagan's current neuro is not yet seeing patients there, we decided to see her former doctor! It was a nice visit. He's a smart guy and takes lots of time. We were there for an hour and 45min! He never seemed rushed or in a hurry to get out of there and asked lots of questions. I think it's good to see a new person every now and then just to have a new set of eyes. He made a few suggestions that are worth looking into...like checking her iron levels (can be linked to restless leg/dystonia), keeping close record of her seizures vs. menstral cycle, and even looking into supplements that might be more specific for her exact mutation. He was going to talk with her other neuro as well as her geneticist about all of these things. The plan is to follow up in 6 months but let him know sooner if we see a very clear indication of seizure activity before/after/during her cycles so that we can possibly schedule an EEG with more success in picking up those episodes. We made a follow up appt with him and I think we may keep it. While her current neuro is probably my favorite neuro she's ever had...he's just more caring and compassionate than any dr that's ever treated her...he's also taking on the role of the head of this clinic and only seeing patients a half a day a week...so his availability will be very limited and I know her previous dr will be working very closely with him so he can consult him if need be. We finally got out of there around 1pm and headed home. The drive wasn't nearly as bad as I thought it would be. I was really dreading it, but everything went very smoothly and I'm just thankful that we made it back without any mishaps. As soon as we got back, we immediately took my girl out of the car and laid her down on the floor. We figured she would be dying to roll around and get out of a chair. But she wasn't on the floor 5min and she started gagging. Big gags, as if she was actually going to throw up! I sat her up and held her and it passed. I'm fairly positive it was triggered by sinus drainage. While we were in Houston we noticed her nose was running and we even caught her blowing bubbles at one point! Thankfully, she was much better when upright so she spent most of the rest of the night in her chair. Eventually I did lay her down again to change her and she seemed OK. After that, I just rolled her onto her side, so as not to give gravity a chance to make her sick and she was fine. Mike laid down with her around midnight and while sleepy, she was not completely asleep. But by the time I went in with her formula, she was out. Really hoping she sleeps and we don't see any more of that nausea business! We've got an appt with GI tomorrow, so busy busy!
Sunday, November 26, 2017
Reagan woke up a little early this morning, but she was in good spirits. She's been good but a little kooky today. We had a new nurse working and Reagan gave her a run for her money. She wasn't bad, just a little vocal and hard to tell if she was getting upset or just kooky. I think it was just kooky because she never actually had any tears. I think it might actually be that time of the month, so maybe that's a contributing factor as well. Not sure what to expect going forward, but praying for good days for my girl. We did get out and look out some Christmas lights tonight. We've got two streets that are close by that go ALL out! Tomorrow we're supposed to go to Houston to see her new/old neuro so hopefully she's up for it!
Friday, November 24, 2017
Reagan was a little restless last night, but she had a good day today. She's been a little goofy, but good. When Mike put up the Halloween decorations last week, he took down the Christmas boxes as part of my birthday present (he loathes putting up and taking down all of my decorations). But being the Christmas lover that I am, I wanted to be ready to start Christmas the second Thanksgiving was over! So today while I took Ryan to his swim lesson, Mike put up the Christmas tree! Woohoo! Then tonight Ryan and I worked on decorating it. Ryan of course put balls only on the bottom of the tree, so I had to go back and move them once he was in bed! ;) Reagan was enjoying just looking at the lights. She did have one seizure like episode when I picked her up and held her tonight. She yelled out for a sec and then her head turned sharply to the left and her eyes were looking up and to the left. It only lasted 20sec or so, but I'm still not a fan. Ugh. What a way to ruin a good day. Hoping she sleeps well tonight and has another good day tomorrow.
Thursday, November 23, 2017
Reagan had a pretty good day today. We weren't sure how she would be, since she was sensitive and a bit kooky last night, but she actually had a good day. We had Thanksgiving at our house this year which was great as we definitely weren't ready to drive anywhere after having just gotten back from Louisiana. Mike's family and my Dad and stepmother were all here. We had lots of food and everyone had a good time. Reagan was serious but calm. Very still. Not even chewing on her hands. She even dozed off a few times, but only for moments. It wasn't until later that night after everyone was gone that she started getting a little rowdy/kooky again. Hoping she has another good day tomorrow.
Monday, November 20, 2017
Last night sleep was OK. Reagan was moving a lot and every time she moved I would wake up and pat her back to sleep. Not sure how much sleep either of us got. Ryan was wiped out from the day before and not only passed out early last night, Mike said he didn't move a muscle all night long! Usually he is a very restless sleeper, so he must've been exhausted. Everyone woke up on the right side of the bed today though, so after another great cajun breakfast at our bnb, we all headed back to Texas. On the way back, we passed through the town where Mike's Grandfather is staying in a veteran's assisted living facility. We decided to stop by so he could see him. The place was nice all things considered. Mike's grandfather has dementia so he wasn't sure if he really recognized him or not, but he seemed to remember Reagan, commenting on how big she was getting! He was happy to have someone to talk to and he chatted for a while about the past. Ryan got a little silly and was laughing and that really perked up a few of the patients. So glad to bring a smile to their day. We stayed for a bit, but then it was time to get back on the road. We were very close to the Louisianna/Texas border when Reagan started getting upset. She was vocalizing and sticking her tongue out and arching her back. Something was hurting her. We eventually were able to pull over to get her out of her chair and check her out. I was pretty sure she was having tummy pains so I decided to help her poo. That's exactly what it was! Poor girl. She took care of business and felt SO much better. Her bloated tummy became flat as a pancake once again and all was right with the world. We loaded back up and made it all the way home without any other issues. It was a looooong drive, but both kiddos really did well. We are so happy to be home tonight and sleeping in our own beds. Now we have to start getting ready for Thanksgiving...
Sunday, November 19, 2017
Reagan slept well last night...like a rock really. But when she woke up this morning, she woke up in tears. Not surprising, but very disappointing. We were definitely worried. Worried that one of us might have to spend the entire day sitting in the hotel room with a hysterical Reagan. Thankfully that didn't happen. I gave her one dose of medicine and she was fine. We weren't sure if it would continue or not, but we loaded up and headed to the zoo, taking my step brother with us (everyone else went to Catholic mass). It was much cooler today and pretty windy, but we tucked Reagan into her stroller with a blanket and wind canopy over her and she was pretty comfortable. It was a small zoo, Mike and I had actually visited it years ago, but the kids (and John) seemed to enjoy it! We even took the super slow train for a spin! Afterward we met up with my Dad and step mother and John's family and headed over to Vermillionville to learn a little about cajun history. Ryan was a little bored, but we weren't there long so we were able to drag him along. He did enjoy the little ferry we pulled ourselves on across the water and the fog/tornado machine. My uncle Whitney and his girlfriend met up with us there and then back at the hotel again for dessert. Reagan persevered. She was good the entire day! We are still in shock. She was laid back and calm, never made a peep the rest of the day. SO glad she pulled through and had a great day! Tomorrow we head home!
Saturday, November 18, 2017
Reagan slept OK last night, just a little restless. She woke up this morning tense, but OK. We took turns going to breakfast, our bed and breakfast had a yummy cajun breakfast cooked so we definitely wanted to partake. I finished giving Reagan all of her morning meds and she was tense but OK. We decided to go ahead and try to go to the reunion. We followed my dad to my Aunt's house. It was very windy and Reagan was a bit sensitive, so we put Reagan into her chair and then put a windshield over her stroller to shield her from the wind. It definitely helped, but she was still a little annoyed by the wind. She was good for 30min or so and then started getting frustrated. We moved her inside where she eventually burst into tears. We were afraid we would have to head back to the hotel with her. I gave her some pain medicine and then picked her up and held her in my lap. Even with all of the noise, she managed to doze off on my lap. Mike moved her to a bed where she continued sleeping for the rest of the day! I didn't think to bring our monitor with us, so we just had to keep going in to check on her every few minutes. I put some white noise on my phone and left it beside her. She was sleeping hard though, even with people constantly coming in and out of the house making noise and my uncle outside playing music with his band! Thanks to our sleeping beauty, we were able to stay the entire day. I saw all of my Aunts and Uncles and cousins I hadn't seen in years! Ryan played hard, bouncing on the bounce house and trampoline, horseback riding, chasing his cousins and second cousins around. My uncle and his band played live music. We all had a great time. We loaded Reagan up and while she wasn't happy, she wasn't crying either. We were all pretty exhausted and everyone went back to the hotel and pretty much just crashed. Hoping my girl wakes up feeling better tomorrow.
My sweet girl didn't make it into either picture as she was sleeping and we didn't dare wake her.
Friday, November 17, 2017
Today we loaded up the car and headed to Louisiana for my Dad's family reunion. We had a nurse this morning which was helpful as I finished packing and stuffing everything in the car. Ryan went to school and then Mike joined him for Thanksgiving lunch. We left right afterward. Both kids did very well with the car ride. It was a loooong drive from Austin to Laffayette but we made it around 6:30pm. It took us a few trips around the block (and my dad flagging us down in the street) before we finally found the bed and breakfast we were staying at. It's an old plantation home of a former governor (built in the 1820s). When we got there they had live music playing out in the courtyard. Immediately Reagan started getting tense. We put her noise cancelling headphones on her and went inside and she did fine. Tonight Mike's in the room with Reagan and I'm in the room with Ryan...which are on opposite sides of the carriage house. Hoping both kids behave themselves and we're able to get some sleep. Maybe these freshly baked chocolate chip cookies on our bed will help!?!
Wednesday, November 15, 2017
Reagan had an early session of speech this morning. She did well, but that was the only thing we had going on. We were supposed to do her rescheduled hippotherapy evaluation today, but the instructor called from the hospital to cancel because she was violently sick. Glad we didn't have an appt yesterday! It was too bad though, because Reagan was really in the perfect mood for it today, very relaxed and calm. Since we ended up with some free time this afternoon, we were able to take advantage of it and meet Reagan's old nurse Megan and her baby at the aquarium! We waited til Ryan got out of school and then headed over. Everyone had a great time! We miss Megan and still hold out hope that someday she'll come back to us even if just a day or two a week! Are you reading this Megan? ;) Anyway, glad my girl had a good day and we were able to take advantage of it.
Tuesday, November 14, 2017
My sweet adorable girl...so happy on Mommy's birthday! Not a lot of plans. Just hanging out with the kids and watching Outlander. Grandma and my sister had cupcakes and cookies delivered, so we're set for dinner! ;)
Monday, November 13, 2017
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 outgrown (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.