Thursday, August 31, 2017

Still sleepy

We all slept last night. Ryan ended up in our bed again (for the second night in a row), which I'm not super thrilled about, but at least he wasn't too restless. I got up early to run this morning and heard Reagan coughing/moving around, but when I went in to check on her, she was still asleep. She had another pretty sleepy day today. She didn't sleep the whole day through like she did yesterday, but she slept off and on for most of the day. No therapies...it was a good thing we took care of school the first two days of the week, because the rest of this week my girl has been MIA. When she's been awake, she's been good though, so that's good. Found out this afternoon that our nurse's CPR certification expires today, so she can't work tomorrow. Ugh. So much for all of the errands I needed to run tomorrow. Hoping my girl behaves herself.

Wednesday, August 30, 2017

Sooooo sleepy

Reagan slept the entire day today. She was OUT. Slept through medicines, having her vitals checked, diaper/cothing changes, she even continued sleeping when her nurse moved her out of her bed and into the therapy room (so she could change out the sheets on her bed). Ryan seemed to have another good day at school. He is definitely the most delightful child to pick up. He's just grinning from ear to ear and so sweet (probably because he wanted a new pokemon toy), but seriously, so cute. This girl obviously needed some rest today and she got it! Her nurse left at 6pm and she was still fast asleep. I didn't hear a peep out of her and I checked the monitor multiple times and never saw any movement. Then at 7pm, I went in and found her laying there super still and quiet but wide awake! Big eyes. Very calm and sweet. I brought her downstairs where she continued to be super still and laid back, but awake. As it got a little later, she was looking more sleepy again, but never actually fell asleep. Dad carried her upstairs around 10pm and laid down with her and she was out by 10:30. Hoping we all can get some good sleep tonight.

Tuesday, August 29, 2017

Still sweet

Today was another good day for my girl. She was still very talky and sweet. She had another session of PT and school/vision today. Gotta take advantage of these good days! Unfortunately OT is on hold right now waiting for approval from the insurance. This whole mess of fighting with them every couple months is ridiculous! Right now they're just cutting everyone left and right. And it's the kids that are suffering. Very sad. Ryan got another thumbs up today, so I guess all is well at school. Tonight Reagan was very squirmy, but in a stressed sort of way. I tried holding her and she just flailed around a lot and was difficult to hold. Eventually I gave her clonidine to help her fall asleep and it that just escalated her a bit. She became even more erratic, but eventually settled down and fell asleep. Hoping she's able to sleep tonight.



Monday, August 28, 2017

First day of school 2017

My super sleepy girl slept well last night. I did wake up around 5am to find her upside down and at the end of her bed, but she was still asleep! I just turned her around and tucked her back in and she never even cracked her eyes. Ryan slept well too. I had to go wake him up around 6:10am because he needed some time to wake up before school. Of course, he just went and crawled into my bed with Dad at first, but he eventually got up and was a happy boy. I do think I'm more nervous than he is about his first day. I'm really hoping he won't give his new teacher too much of a hard time. Mike and I both took him into school, but we were a little early so there were still a lot of kids/parents coming in as we left. It made me nervous leaving him with still so much going on, but we did. He seemed fine and was only getting clingy the longer we were there. I think he did fine. I didn't get a lot of feedback. Just a thumbs up from his teacher at pick up. Hopefully that means he was good and he keeps the thumbs ups the rest of the week! Reagan was also really great today. She's been sweet and talkative...I just knew she was going to have a great day. She has been coughy, but that didn't hold her back, she's had a jam packed day. Speech first thing this morning, followed by PT, and then her first day of school/vision therapy! Busy, busy, busy! She was a super star and oh so precious in her back to school pics. Love these kiddos!










Sunday, August 27, 2017

Better but sleepy

Reagan slept last night in her bed (woohoo) and woke up today feeling SO MUCH BETTER. She's had a very sleepy day today...I don't blame her. With all of the rain hitting us from the hurricane, it's definitely been a dreary couple of days. She slept in this morning but has been super groggy most of the day, dozing off and on the rest of the day. Only awake for short periods, but wide eyed and completely content! Now she's still congested and coughing a lot, but no more gunky nose so that's good. The gunk in her chest does worry me a little. I'll feel a little better tomorrow when we have a nurse that can listen to her and make sure her lungs are clear. Definitely must be related to the fever early last week, just not sure what it is. Some sort of respiratory virus I guess. I've had a sore throat off and on too, so it must be related. Hoping she can recover quickly and everyone else stays healthy. Ryan's got his first day of Kindergarten tomorrow! I'm super nervous, but I think he's excited.

Saturday, August 26, 2017

Bad day

Thank God...Reagan finally slept last night. She even slept in this morning. Unfortunately when she finally did wake up, right around 10:30am, she was NOT happy. Wide startled eyes. Very tense. Very stiff like yesterday. But also right away she was on the verge of tears. On a good note, she did have a big wet diaper so at least she's peeing on her own. I moved her to the therapy room and it was immediately apparent this was going to be a bad day. Within minutes of being awake, she was crying and flailing...totally miserable. I gave her some pain medicine which definitely seemed to help and she was able to fall back to sleep fairly quickly. She slept maybe 2.5hrs or so and then woke back up miserable. This time I had to try something else (as it hadn't been 4 hrs yet, so she couldn't have the same medicine again). I picked her up and held her and she eventually fell asleep in my arms. Of course she woke up crying the second I tried to lay her down. So I picked her up and moved to a chair (where at least I had some back support) and we both dozed for over an hour. She eventually woke back up and was super upset again. I moved her back to the floor and gave her another dose of the pain medicine, which again worked like a charm. Poor sweet girl. I just wish we knew exactly what it is that's hurting her on days like these. It's so frustrating (for both her and us) that she can't tell us!


Our butterfly hatched out today! I guess it doesn't care about the torrential rains that are plaguing us!



Hope he's OK!!

Friday, August 25, 2017

Super tense

Reagan was up most of the night again last night. Woke up around 1:45am (again) and then was tossing and turning and vocalizing til morning. She's A LOT more tense today. Whiney/moany and very stiff. Her legs are either bent up to her chest, or they're straight as boards and it's nearly impossible to get her to budge either way. She also had a definite head turn and stiffening out that appeared to be a seizure (and a few other suspicious moments). Her tube was leaking a lot this morning. Could be because of the increased tone and crunching in half or could be the tube. I wasn't willing to take the risk of having it break over the weekend (with the incoming hurricane). So when they were able to squeeze us in this afternoon for a gj change, we went ahead and took it. We did have to take Ryan along, but thankfully he was pretty well behaved. They did put the tube in upside down again, even after I told them I wanted it the other way, so that's frustrating. It'll be fine, it's just at that position the extension is more likely to fall into the unlock position and pop out. :( Not fun. Reagan was very tense during the switch, but we managed to hold her down enough for them to get it done. We were in and out within an hour (from the second we got there to the second we left), so I was pretty happy about that. We got home and gave my girl a much needed bath, she's been especially sweaty due to being so stressed. We've also done our best today to keep both hands away from her because she's really going to town on them. They are both bright red and the left one (the one she puts in her mouth the most) is cracking in multiple places. She's not happy about the restraints but she does seem to calm down a little when she can't go nuts with those hands. We're seeing more signs of congestion today. She's got a bit of a cough and she's very hoarse. Poor thing. Something is definitely going on. I've also noticed a bit of a bad day smell today, from her sweat and her mouth, so I'm a little nervous to see what this weekend has in store for us. I'm really just hoping she can sleep tonight. It's been days since she's had a decent night's sleep and her poor little bloodshot eyes need some rest. Please keep my girl in your prayers this weekend.

Thursday, August 24, 2017

Meet the teacher

Reagan was up bright and early this morning. She's been in a good mood for the most part, although there were signs of tension here and there. Her nurse put her in her wheelchair this morning (with her AFOs on) and there was some major teeth grinding going on. She settled down and had a good visit with PT. Ryan had meet the teacher this morning. It all started off well enough. He sat quietly in the cafeteria while we all waiting to follow the teachers back to their rooms. Once in the room, Ryan started on this "are we almost done" kick. He wouldn't stop saying it. The worst part was when he started saying it while the teacher was trying to do a group activity with them. Ugh. Eventually we left the classroom again for a tour of the school/scavenger hunt and he settled down. To say I'm nervous about him starting kindergarten is an understatement. His teacher seems nice though and not at all rattled by his craziness, so hopefully it will go well.


See those white shorts on the bottom right...that's Ryan. The only one laying down! 😣

Wednesday, August 23, 2017

The search

Reagan slept well last night and woke up in a good mood this morning. Only one therapy today, speech, but she did well with that. No signs of the fever since Monday, but she has been a little congested/coughy. I've had a sore throat myself, so hopefully we don't spread something around the house! Had a meeting with the nursing company today. They're "working on" finding a new nurse to fill our shifts. Hopefully they're able to find a good fit (or at least a decent fit temporarily) by the time our nurse leaves in two weeks. Ugh. Hate change. It sucks for us and most importantly it sucks for my girl. Please keep it in your prayers that we can find someone who will take great care of our princess.

Tuesday, August 22, 2017

Sweet girl

Reagan slept well last night and woke up this morning talky and sweet (and without fever). She's had a great day today. Been super laid back and darling. More into her hand as the day has gone on. She had OT this afternoon and she did well with that. Tonight she's been super talkative and cute.




I took Ryan by the YMCA today to feed the ducks/geese! They went a little nuts!

Monday, August 21, 2017

Sweet and feverish

Reagan woke up sweet and precious this morning...and hot! She was running a fever! I wonder if that's why she was a little fussy all day yesterday. Poor thing! Despite the fever (which was as high as 101.5), she's been in a really great mood today! Talky and sweet. We had to cancel her therapies (because of the fever), but overall she's been in great spirits. A little sleepy, but good. This afternoon/tonight she's been a little chokey. She's more spitty than usual and having issues managing it. Hoping she can fall asleep and sleep that off (that and the fever)!



Sunday, August 20, 2017

Near tears

Reagan definitely had an off day today. She's been on edge all day. Not really flat out screaming crying, but more just super sensitive and near tears a lot. We've had to be VERY careful around her. I've given her ibuprofen throughout the day and that seems to take the edge off a little. Not sure what's going on with her. Cramps maybe? Mood swings? We're still not sure what's going on with this whole puberty thing. She hasn't officially started puberty yet, but her hormone levels have been high for 1-2 yrs now! Ugh. Not a fan. Hoping she settles down and has a good week this week.

Saturday, August 19, 2017

A little sensitive

Reagan had a pretty good day today. She was a little sensitive, especially to us talking, so we had to be careful because she was near tears a few times. Mike spent the day cooking a brisket for our neighbors who were throwing a party for their daughter who is going to Texas Tech. Our house and back porch smell heavenly! We were hoping to all go over this afternoon, but Mike had to stay back with Reagan (because of her sensitivity). Ryan had fun playing with all of the kiddos and jumping on the trampoline. Somebody should sleep well tonight! 

Friday, August 18, 2017

Great day, bad news

Still no nursing today, but my girl had a great day nonetheless. This morning just consisted of hanging out with brother watching cartoons. Then this afternoon we had to take Ryan to his last day of handwriting camp so we all loaded up in the car and drove to Austin. Thankfully they came and got him from the car (and brought him back out), so I didn't have to drag Reagan inside. We just drove around for an hour and a half (she wasn't a fan of just sitting in the parking lot) while he was getting his handwriting on! Tonight Daddy had a business dinner he had to go to, so it was just me and the kids for the rest of the night. It's been a looooong day with no help, but thankfully both kids were pretty well behaved. We did get one really bad piece of news today...her nurse (that's out) is leaving to work in the hospital in a few weeks. Ugh. It really sucks to lose a nurse. Especially when they are working the majority of your shifts AND you like them! What's the chance the agency will come through and find a good replacement in time? Especially since they are short handed in the office as well? Does not look good. :(

Thursday, August 17, 2017

On our own

*Quick thank you to all of those hanging in there for updates. This is certainly the longest I've ever taken to publish a blog post. I usually write them right away, but save the drafts to go back and edit later. Unfortunately this later turned into weeks! Sorry about that. We're all good and unaffected by the Hurricane, just busy.*

So we got the dreaded call at 6am this morning telling us our nurse was not coming in (for two days due to a family medical emergency). Thankfully, it turned out fine. Reagan was in a good mood and I was able to hold down the fort with both kiddos. Reagan has been in a good mood today. Very wide eyed and vocal. Happy to roll around on the floor. Not a whole lot going on today. She did have OT this afternoon and today she was actually awake for it! She had a great session with her OT and we were happy to see her as she's been in Ireland for the last two weeks. Hoping my girl's good mood will continue for tomorrow and over the weekend!

Both kiddos in Christmas pjs today! It's not too soon, right?!?!


Wednesday, August 16, 2017

Pretty great

Reagan slept well last night and then woke up this morning cooing and in a good mood. Whew! What a relief! (She had squirmed halfway across the room!) She's been vocal and sweet all day. She did have a little brief period this morning where she looked like she was getting upset, but she pulled through and has actually been pretty great all day. She's taken several little cat naps today...enough to miss all of her scheduled therapies! She knows what she's doing. She's also had tons of gas and two huge poos today, so I'm sure that has to be a relief to her little tummy. Hoping she can continue to have good days. Would love to get in some therapies tomorrow and Friday as she's already missed two days of therapy this week!

Tuesday, August 15, 2017

Asleep then miserable

Reagan slept the entire day today. Slept like a rock last night and continued sleeping hard all day. Her nurse gave her medicines, checked her vitals, and changed diapers without waking her even once! She joked that I we could put a marching band in her room and that wouldn't even wake her up! All of that came to a screeching halt around 5:30pm when her nurse attempted one last diaper change. Reagan woke up crying and would NOT settle down. Mike had mentioned that she was very limp last night when he took her to bed, which is sometimes a sign for impending bad days. God I hope not. She was pretty miserable though. Her nurse gave her medicine but she didn't stop crying until I held her. And wouldn't stay asleep unless I was holding her. Eventually she woke back up and was miserable and crying once more. This time I gave her clonidine (her normal nighttime sleep medicine) and it worked. She fell asleep and I was able to get her comfortable on her mat on the floor. I carefully gave her the rest of her medicines and didn't even attempt a diaper change before bed. Praying she can stay asleep and wake up feeling better in the am. Poor sweet girl. Slept all day to wake up miserable. No fun.

Monday, August 14, 2017

Great day, gaggy night

Reagan had a great day today. She's been in a good mood and sweet and smiley all day. She had a busy day of therapies and did awesome with all of them. She had speech, PT, and then school and was a rock star for everything. Really great day for therapy. She's been full of laughs and smiles all day. Then this afternoon she's gotten very spitty/gaggy out of no where. She's not low tone like she normally is when she gets spitty, so I'm wondering if her tummy is bothering her. I hooked her up to a drain tonight and drained a good amount of fluid and air out of her tummy. Hopefully that helps. Praying she can get some sleep tonight and sleep off this nausea.

Sunday, August 13, 2017

Tense morning, but better by afternoon

It's been an interesting day today. Reagan was restless last night and making lots of noise, but she was content enough to just lay in bed and was dozing off and on.  I got up early to run but everyone was up and at em by the time I got home. Reagan had been crying and still had tears all over her face. She was very much on edge all morning and I was worried we were in for a full on bad day. Thankfully, she proved us wrong. She turned things around and actually had a pretty good day. She was slightly sensitive (especially in the morning), but really loosened up as the day went on. Tonight she was squirmy and sweet. Not getting sleepy, but still super precious! Hoping for a great day tomorrow for my girl!


Friday, August 11, 2017

Good girl, good day

Reagan had a good day today. She slept well and woke up super sweet and smiley. She's been pretty adorable all day today. Very smiley. Very sweet. A little easily excitable with certain things (the ipad), but overall very good. She had PT this morning with her new PT (her other PT is on early maternity leave) and was great for that. Then the rest of the day she took it easy with her nurse. Tonight she's been darling. Very talkative. A little handsy on her tube, but overall pretty precious. Hoping for a good weekend for my girl!

Thursday, August 10, 2017

Still precious

Reagan had a good day today. She's been smiley and precious again. So glad she turned things around. We weren't really sure where she was headed yesterday. No therapies as her OT is still out of town and her PT is starting maternity leave and we're transitioning to a new PT on different days.

Wednesday, August 9, 2017

Calm, sensitive, sleepy, tears, and smiles!

Reagan slept well last night and woke up this morning super precious and wide eyed. I was sooooo relieved to see that she woke up calm and content! She had speech this morning and did pretty well. She was a bit sensitive so they kept it low key. She worked on yes/no responses and using the eye gaze on the computer. She had a great morning and then got sleepy again this afternoon. She took a nice long nap but then woke up crying, but thankfully her nurse was able to get her back to sleep pretty easily. She slept til around 7pm. She woke up wide eyed and precious. A little dry mouthed but I gave her some swabs of water and I think that helped. She's been super smiley and precious all night. Huge ear to ear smiles. Just wonderful, this girl.

Tuesday, August 8, 2017

Tense and tears

Reagan slept like a rock last night. Mike said when he put her to sleep that he was nervous about a bad day...she rarely goes to sleep that limp unless a bad day is on the horizon. I was just hoping he was wrong. She slept in this morning, waking up in a seemingly calm mood. I could tell her nurse was a little apprehensive (she seemed tense to her), but she seemed super sweet and easy going to me. She had PT around noon and did a good job with that working on trunk rotation. She had her reaching and rotating to touch her switch while sitting up. She did get a little sleepy toward the end and then eventually dozed off. She woke up upset around 5pm but her nurse was able to calm her down with deep breathing and tapping. She woke back up crying around 6:30. She was not happy. I tried to console her but she didn't really calm until she fell asleep again. When she woke back up about 30min later, she was fussy but not crying. I just laid beside her the rest of the night and tried to keep her calm. I noticed her tummy was a bit rumbly (she's due for a poo but no chance she's going to take care of that today). She was OK with a little patting and reassurance. We watched Secrets of the Great Barrier Reef on mute twice in a row. It was very visually soothing and seemed to keep her calm. Thankfully between clonidine and Daddy, she's now asleep in her bed. Praying she sleeps and wakes up feeling a little better in the am!

Monday, August 7, 2017

Precious girl

Reagan had a pretty good day today. She had school and did really well with that. Not super into fine motor activities today, as she wanted her hands in her mouth, but other than that she was super cooperative. Very precious and smiley today. Tonight she was still super rolly polly (only tonight she managed to keep her pants on)! She kept squirming off her mat and we'd have to move her back up over and over again. She was spitting and chewing on her hands so much, her fingers were like icicles and both sleeves of her pjs were soaking wet! I changed her clothes and then decided to pick her up to try to keep her from doing that again, and instantly she fell asleep in my arms! Could this girl be ANY more precious?!?! I don't think so!

Sunday, August 6, 2017

Pretty good

Reagan did not sleep much last night. I kept hearing her talking off and on. She got particularly vocal around 4am so I went in to check on her and found her on top of her covers, completely squirmed out of both her pants and her diaper! Crazy girl! I fixed her up and tucked her back in and when I checked back in on her an hour later, she was asleep! An hour later, I check on her after I got back from my run, she was wide awake again and out of her covers. I tucked her back in again while I took a shower and she was back asleep by the time I got out! Glad to see she's at least getting some sleep! I found Ryan laying in our bed, just legs sticking out of the bottom of our covers, his head completely under the covers mid bed. Reagan's been in a good mood today. A little less smiley. Laughy especially when she has gas. Still lots of hand in mouth and rubbing that little red nose. A little more sensitive to talking today. Not getting upset, but vocal. Still a pretty good day for my girl! (Of course I did slice into my finger with a large super sharp knife, so I was just happy to avoid the emergency room! Thank God for our friend/neighbor that's a nurse practitioner!)

Saturday, August 5, 2017

So much better

Today was a MUCH better day! Reagan slept last night and woke up vocal and happy. She's obviously feeling much improved and she's been very content and happy all day. We took advantage of this great mood and we all got in the pool today. It was a little sunny, but she seemed to enjoy it! She was moving her legs around and straightening them out in the water, which is great (the last few times she's just pulls them into her chest and won't move at all). Afterward we went for a drive and picked up lunch. Reagan was talking the entire time. I love the way she's looks in this car. So much better than our previous one. She's been super squirmy today. She has squirmed all of the way out of her diaper on more than one occasion! Tonight she seemed a little more tense and was grinding her teeth a lot. She was still content...just tense. She was still awake when Mike put her in bed tonight. Hoping she'll go to sleep but who knows.

Friday, August 4, 2017

Really bad day

So last night was BRUTAL. We didn't even attempt to lay her in bed, she feels more supported in her chair when she's like this. She woke up every hour or so crying. I'd go in pat and shush her and eventually she'd go back to sleep. That was the good part. The bad part is that I was up and down all night long! She actually woke up this morning very serious and big eyed. She was calm for an hour or two before the tears started flowing. Unfortunately, nothing really seemed to help her more than 30min again today. Lots of really hard crying today. She slept off and on but usually just 10min at a time. She escalated again this afternoon and had several really big crying fits. Eventually it would seem she'd tire herself out and then doze off for a few minutes giving us some much needed time to recover. And then finally tonight...a ray of hope. She's still stressed but not crying. We even were able to lay her down in her bed and for now, she's asleep! Which is a huge step in the right direction. Thank you for keeping our girl in your prayers!

Thursday, August 3, 2017

Bad day

Reagan had a rough day today.  She slept in a little this morning, but woke up thrashing and very agitated. From that point on, when she was awake, she was crying. Thankfully (as this is not always the case), she was able to sleep most of the day away with the help of medication. Tonight, not so much. Nothing has really helped more than 30min at a time tonight. Something tells me it's going to be a very long night. It's been two weeks since we last had a real bad day...and you almost get lulled into that false sense of security...thinking (hoping) she can string together more and more good days. Today was definitely an end to that streak. Please keep my girl in your prayers!

Wednesday, August 2, 2017

Nurseless and getting tense...

Reagan was very difficult to get to sleep again last night. We were all exhausted though, so I think we must've crashed. I woke up around 4am to Reagan making a lot of noise (sounded like she was getting upset). I found her pump beeping and her laying on top of her covers sideways. Based on the volume reading on her pump, it was obviously beeping for hours...we just never heard it. I tucked her in and started her pump back up and went back to bed. She was awake and sideways again when Mike went to check on her at 6:30. Right around the same time I got a call from the nursing agency (never a good thing) to tell me our nurse was sick and not coming in! Really terrible timing as we had a busy day planned for today. I had to cancel my dentist appt and skip the grocery store, but between Grandpa and a nurse they found to come in, I was still able to accomplish most of what I needed to do today. Reagan had speech this morning. She was pretty sensitive to talking, so while it wasn't her best day (she wasn't really wanting to use the eyegaze), she still participated answering yes/no to questions. So that was still a win. Reagan was a little more serious, but still talky and cute most of the day. It wasn't until this afternoon that she lost it! Not sure what triggered her (maybe something on tv), but she burst into tears and the nurse couldn't calm her down. I went up and held her and she calmed down. She eventually dozed off on the floor, taking a nice little nap but again woke up crying. Ugh. Not good. We've definitely seen an increase in tension over the last few days. Not sleeping as well. Today she had cold feet and the one red ear...both signs of dysautonomia. Ugh. Prayers that we can avoid a bad day. :(

Tuesday, August 1, 2017

Still adorable

Reagan was up a lot last night, but I do think she dozed occasionally. I heard her making noise when I got back from my run and went in to find her wide eyed and super precious! I was a little worried at first because those wide eyes looked a little wild, but she was actually very calm and content. Still very vocal today. She's been talky and had lots to say all day. She only had one therapy today, PT, but she did really well with it. She did 21 sit to stands!! Actually pushing through her legs to stand up! This is a HUGE improvement. To get her to do any weight bearing is amazing. She's had jello legs for years now! This afternoon we decided to jump in the pool. Ryan was being quite obnoxious (he's in a phase I think), constantly trying to swim under her and then splashing her in the face with water. Our swim was cut a bit short when she twisted to the side and inhaled some water! Ugh. This girl. I let her float for a second while her nurse tried to get a picture of her and her brother, and she twisted to the side and took in an mouth full of water. I pulled her out and laid her on her side, but she recovered fairly quickly. She was great the rest of the night. Very happy rolling around and squirming off her mat on the floor! This girl is a mover and shaker! So adorable...