Friday, September 29, 2017

Tooty

Reagan slept well last night and woke up today feeling so much better. Whew! Glad that only lasted a day. Tomorrow is the Central Texas Energy for Life walkathon so I sure hope she's feeling up to it. No therapies and no nurse today, I didn't get much accomplished but my girl and I did get to spend some quality time together. She has been super gassy today. Toots are still super stinky. Unsure whether that is just due to the new formula or the antibiotic she was put on? Only a few more days on the antibiotic so we'll see. I did hook her up to the vent quite a few times today because her belly just looked distended and I got a ton of air out (not sure that antibiotic is working). Hoping for a good day for my sweet girl tomorrow.

Thursday, September 28, 2017

Sleep and pain

Reagan slept well last night and then just kept sleeping this morning as well. Still nurseless, I had time to give her all of her medicines AND thoroughly clean my kitchen today! That's a first in a long time. She missed both PT and OT. She did wake up right around 1:30pm but she didn't wake up happy. Something was definitely hurting my girl. I was able to get her up, change her diaper, and give her some medicine that helped her to fall back to sleep. It only lasted 2-3hrs before she'd wake back up crying again. Thankfully she responded well to pain medications today. That's not always the case. Hoping she gets over this quickly. Poor girl. Praying she can sleep tonight and wake up feeling better tomorrow.

Tuesday, September 26, 2017

Nurses needed

Reagan definitely slept some last night. I heard her off and on making noises throughout the night, but then I'd look at the monitor and she'd be still and quiet once again. Both she and her brother were up and at em before we were ready to get us this morning. She's been in a pretty good mood today. A little less vocal/kooky and a little more calm. Not nearly as much hand in the mouth today as we've been seeing lately...so that was good. Still holding pee a little, but going on her own for the most part...just when she's good and ready. Lots of stinky gas. Not sure if that's due to the new formula or the antibiotic she's on...or both. She had PT this morning and did a good job actively participating. Then she had OT this afternoon and did a good job with that as well. Today was our only day of nursing this week. Ever since our other nurse left to work in the hospital, our nursing agency has not sent a single person out. We've actually decided it's time to just switch companies so we'll be doing that sometime this week. The new agency has already sent out quite a few good candidates so I'm hopeful this is for the best. It's just complicated because we do have our Tuesday nurse we want to come along with us. Hoping everything works out. It's been a stressful few weeks trying to be a full time nurse/mommy. I need a vacation! Tonight Reagan was super precious. Very rolly, moving and squirming all over the floor. She did seem to have a touch of nausea, so I eventually moved her back to her chair to get her upright. I did notice tonight that while sitting in her chair her back was sweated wet, her hands were cold and clammy, and her cheeks a bit flush. Seems to be a bit of temperature dyregulation going on. Hoping she can keep it together and continue having good days. We're on our own for the rest of this week.

Monday, September 25, 2017

Lost days

I don't remember much about today. Today was one of those days that I didn't get around to blogging about right away and went back later and tried to remember and just couldn't. As much as it kills me, I just haven't been able to keep up with the blog every day as I always have. Having two very demanding kids and no nurse lately has really done me in. I'm going to go ahead and give myself a break and just skip days as needed and hopefully go back later if I can and update. If I can't, that's OK too. My memory is failing me (old age) and I'm unable to recall those days that I didn't have time to document right away. And that's OK. But I will go ahead and publish the blogs I've been hanging onto and hopefully fill in some of the blanks! Thanks for your patience and checking in our girl!

Sunday, September 24, 2017

Super tired Sunday

Mike was up early to go fishing...unfortunately, so was Ryan. Ryan came to my bed around 5:30-6am wide awake and raring to go. I was hoping he'd just lay down beside me and go back to sleep, but that didn't happen. The next thing I know he was grabbing my cell phone and going down the stairs. I laid there for another 15min or so until Reagan woke up and was super vocal and ready to get up. I've been very tired all day today. Not sure if it's because of my early risers or something else. Hoping I'm not getting sick. The rest of the day is a blur. My girl has been good so I have that to be thankful for. Hoping for a good week next week...especially since we will only have a Tues nurse!

Saturday, September 23, 2017

Mini visit

Reagan slept well and woke up in a pretty good mood. A little vocal/kooky but good enough for us to give it a try to go see the mini horses in downtown for their 10yr celebration (I saw last week in my timehop it's been exactly a year since our first visit with the mini horses). Brother seems to be fully recovered as well (even his fever is gone), so hopefully he's not contagious and we all escaped with our health. Reagan got a little more stressed as we were loading her up into the car, but she was OK by the time we got there. We got to see a couple of new horses, Emily & Fiona, both super cute. Ryan initially didn't even want in the picture. We were talking about going to see them the whole way there and somehow he got it in his head that we were going to see Santa's reindeer. So he was both a little shy and disappointed when we tried to get him to pose with the mini horses! Reagan was good though and we snapped a few quick pics of her. Then we let Ryan play some of the little games they had set up. We did manage to get Ryan to go back over and take a few pics with the horses. At this point the sun started coming out and it was beginning to get hot. There really wasn't much more for us to do so we took a quick pic of the kiddos in front of the I love you so much sign and then loaded back up into the car. While we were there, we drove around the lake a little so mike could scout some good kayaking spots for his proposed fishing trip in the morning. Then we made it back around again and stopped to pick up burgers from hopdoddy before driving back home. It was a nice little outing and everyone held it together better than expected.














Friday, September 22, 2017

Sick boy

I don't remember much about today. It's kind of a blur after our night last night. Ryan after having the best day since starting kindergarten (he came home with an awesome report yesterday), then came into our bed last night at 3am and proceeded to throw up right in the middle of our bed! Ugh. We had to strip the entire bed and put all new sheets on right then and there. Thankfully he was OK and eventually fell back to sleep. Reagan did finally wake up today, unfortunately with no nurse and a sick boy home from school, I had to quarantine Reagan upstairs and Ryan downstairs the entire day. Let's just say, I got my steps in for the day! Ryan did have one more throw up incident this morning. I was upstairs with Reagan and when I came downstairs I found him sitting naked in the living room. He then proceeded to tell me that his clothes were wet and outside. Turns out he was outside (thank goodness) and threw up all over himself! At least I was able to easily hose the back porch off! He actually seemed fine the rest of the day. He of course didn't want to eat or drink much, but I didn't want to push it either. He did have a low grade fever this morning that increased as the day went on (getting up to 101.9). But remarkably...he seemed to feel fine. My biggest concern was just keeping the sickies away from Reagan so I did a lot of hand washing along with my stair climbing. Hoping we can all avoid this yuckiness and that we're done with the throw up. We definitely all need a good night's sleep tonight!  

Thursday, September 21, 2017

So so sleepy

Reagan was OUT out last night when Mike put her to bed and she slept like a rock last night. And she just kept sleeping today. She was out like a light all day long. Today was definitely a sleepy day. In fact, Reagan's favorite nurse Megan came today to watch her while I went to an appt with Ryan, but Reagan never even woke up. Not once. She'd stretch, but not even open her eyes. Sweet girl. She must've really needed her sleep. I hate that she missed a chance to spend some one on one time with Megan, but I'm always thankful for days like this that she's able to get much needed rest. Our girl has had issues with sleep her entire life, so nothing makes me happier than to see my girl sleeping peacefully. And that's what she did. The ENTIRE day. She's now back in her bed...still asleep. Sleep tight sleepy girl.

Wednesday, September 20, 2017

A little more serious

Sleep was lacking again last night for my girl. We're not really sure if she slept at all. Poor thing. She's got to be getting tired. Today was a different sort of day for my girl. She was still pretty silly/kooky this morning. We had a couple of potential nurses come by to meet (new agency) and Reagan was well behaved during that time. She had speech at 10 and she did seem to get a little more serious. She tolerated it well, but her mood definitely changed from kooky to serious (but content). And that's how she was the rest of the day. Still smiley and sweet though, especially when you talk to her. But just a little more zoned out in general. We did start the antibiotic today. So far so good, although tonight when I picked Reagan up and held her, she did have one little period of choking that sounded like she might need to throw up. I don't know if it was just reflux from me holding her more reclined or what. She seemed a little spitty/nauseous after that but then dozed off. Mike moved her to her bed and she was OUT. Like out out. Maybe it was just a lack of tone causing her to choke and almost gag? Who knows. Really hoping she sleeps tonight. It's been quite a while since she's gotten a good night's sleep.

Tuesday, September 19, 2017

Still kooky

So my girl never really went to sleep last night. She was squirming around and making noise all night long. She's had a pretty similar day today to yesterday. Lots of vocalizations, super tense body, very obsessed with her hands (this morning her left hand looked like it had been preserved in a jar...it was so white and shriveled). She did have a big seizure this morning while we were trying to change her. She was laying on the mat and vocalizing and I noticed she had her head turned sharply and her eyes were fixed to the left. Her nurse watched the clock and it lasted over a minute. 4x longer than usual. Ugh. I HATE seizures (and puberty). She had a busy afternoon of therapy. PT, immediately followed by OT, a short break and then school. She actually did pretty well with everything, all things considered. I did speak with her gi doctor again this afternoon about the antibiotic (flagyl) he wants to put her on. He said it's a very widely used antibiotic and although it could have the risk of causing nausea/vomiting, he doesn't think it will and it's worth chancing it if we can clear some of the gas from her belly (which has to be painful). So we'll see. I think we'll start it tomorrow. It's a two week course, 3x a day! 



Monday, September 18, 2017

Long day

Reagan slept well last night but was wide awake when we all got up this morning at 6am. I honestly was expecting her to sleep the whole day through being as sleepy as she was last night...but that didn't happen. She woke up happy and in good spirits (but her body is very stiff/tense). Still super sweet and darling, we did a quick bath before her speech therapist got here. She had a good session with speech and then I laid her on her mat for a bit. She started getting more vocal, so I picked her up and held her. She eventually dozed off on my lap. I laid her down and she slept for maybe an hour or so. She woke back up and was quiet for a bit before getting vocal again. It's not a good vocal, it's a high pitched agitated sounding vocalization that she's doing over and over (and OVER) again. I hooked her tummy up to a drain tube and got a lot of air (common) but also got a lot of yellow bubbles/fluid (which is not at all common). Usually if I drain her g-tube I'll get some bubbles or fluid but they are almost always clear. This is sort of a neon yellow color (obviously bile). Bile should not be in her stomach. I have to assume that this has something to do with the new formula, I'm just hoping it will resolve on it's own. I'll have to keep an eye on it. I also have to wonder if the vocalizing has something to do with her tummy. Ugh. Just another time where this would be so much easier if she could tell us what's going on!! Of course we have no nurse today...so it's just me trying to figure this out on my own. I did hear from her gi doctor this afternoon and he didn't seem to worried about it. He actually called to tell me the results of her abdominal ultrasound the other day. While there was no poo clogging up her intestines, they were filled with air. Lots and lots of it. Not surprising, as when we vent her tummy we always gets lots of air (sounds like a wind tunnel). Anyway, he said there are a few possibilities that might be causing it (other than it just seems to be a common thing seen in kiddos with mito). It could be from air swallowing, which is very hard to test. Or it could be from bacterial overgrowth, which is also very hard to test for and apparently easier to just treat with an antibiotic. So that's his suggestion. I'm a little nervous about the side effects so I may need to talk with him again before starting her on it. We'll see. She's been pretty crazy/vocal all night. Not sure how on earth we're going to get her to sleep! It's been a loooong day, really hoping we can all get some sleep tonight! We have a nurse tomorrow!

Sunday, September 17, 2017

Time for a switch

Reagan was a little restless last night. She definitely slept some, but it was off an on. I found her early this morning laying on top of the covers, I tucked her back in and she dozed back off. When I got back from my run I found her upside down in bed, uncovered, and soaked in pedialyte! Her extension had come out, partially from them putting her tube in the wrong way making it easier for it to get into the unlocked position and partially because she's been very handsy with her tube lately. Either way it made for a big mess. Less so because of the pedialyte (which is at least clear), but more so because her button did not plug back up so her intestinal fluid (bile) was leaking out all over the bed. Ugh. So two loads of laundry needed right away to start the day! Thankfully my girl was just as sweet and darling as can be, although still slightly nauseous. Seeing her nauseous again for the 4th time in less than two weeks has really made me decide it's time for a change. Starting today I'm going to add some of the Kate Farms formula to her pump, I'll slowly add in a little more throughout the day, but it's time. And I love the idea of her being on this formula. It's organic, filled with super foods, and hypoallergenic including no corn (her previous formula had corn syrup solids as it's primary ingredient). Oh how I hope she'll do well on this. We're going to dilute it in pedialyte so it's closer to her current calorie intake as well, so hopefully that will help with the transition. Please keep this in your prayers. We'd love to find something that agrees with our girl and her tricky metabolism. The rest of the day she was great. Super sweet and darling. Less vocal than yesterday, but very content. Hoping this switch will be nothing but good for her. Tonight she was SO tired. She and Mike were both out cold! When he picked her up to take her to bed she was totally limp. Hoping that means she'll get a good night's rest tonight! Sweet dreams sweet girl!

Saturday, September 16, 2017

Nauseous AGAIN

Sooooo my girl woke up nauseous today. Ugh. What the heck?!?! I tried giving her some Zofran. Her GI Dr gave us a new prescription for Zofran and suggested we try it again (even though it's never helped in the past). It was in dissoluble pill form so I thought I'd try giving it to her by mouth. I dissolved it in a tiny bit of water and then gave her drops of the water in her mouth via syringe. It didn't see to bother her, but it also never seemed to work. The nausea continued all day long. I tried another dose of it this afternoon, this time in her tube, but again it didn't seem to help. New formula it is. Not yet though, first we do pedialyte. I'm just hoping my girl can sleep this nausea away tonight. Please keep her in your prayers.

Friday, September 15, 2017

Mommy and me

Reagan slept some last night and was a cute vocal girl this morning. She's been pretty sweet and precious all day today. No nurse...so it was just me and my girl today. We did a quick much needed bath first thing. Not the easiest thing to do alone, but we managed. Then she had speech and PT shortly thereafter. She did well with both. Then we went on a quick trip to Target and back home to pick up Ryan. A sweet friend sat with Reagan while I ran in and got Ryan and then we took both her and her daughter (Reagan's friend) home. It was a nice little outing. She's been super vocal/laughy tonight. And very squirmy. I have to keep moving her back onto her pillow/mat. Really hoping she can hold it together and have a great weekend. I've got a long run tomorrow morning, so I'm hoping everyone sleeps in!


Cute girl, but her face was getting red from those hands being in the mouth nonstop!

Thursday, September 14, 2017

Sweet girl

So today we had our Tuesday nurse working again...thank goodness. Still not a lot of hope on the new nurse front. Our agency just isn't getting people in that are even options. They sent one lady out to orient only to find out that it took her over an hour and a half to get here and she's not willing to drive that distance multiple days a week. Ugh. So frustrating. Today we went in for Reagan's abdominal xray. We were in and out pretty quickly. She's always the model patient. We got back just in time for OT. She did a great job with OT and then had a great session with her teacher shortly thereafter. Such a cutie today. Sweet girl.


Wednesday, September 13, 2017

GI appt

Reagan had an OK day today. I was worried after last night, but she held it together. Our Tues nurse picked up a partial shift today (and tomorrow)...God bless her soul. She was a big help because we had a GI appt we had to go to today and it's always so much easier having help! So today we saw Reagan's GI Dr. who I just found out is moving to Dubai in Dec. Ugh. He is one of her good docs. He did make an interesting suggestion during our appt. There is a new formula called Kate Farms he thinks maybe we should try. It sounds great. It's plant based protein, organic, has 29 super foods, corn free and allergen free...it sounds really great. Her current formula is 55% corn syrup solids...that can't be good. But...she's been nausea free on it for over a year! That is a very big deal. Not sure what's caused the nausea to come back, but if it stays, you can bet we'll be changing to this new formula. We'll see. For now, she's still on her old formula (and after a few days on pedialyte she's lost the two pounds she put on over the last couple of months). Her doctor also ordered a stomach xray just to check to make sure her nausea isn't coming from some sort of blockage or impaction. We went downstairs to try to get an xray but there was a wait and a crowded waiting room. We opted to just go home and make an appt to go into a place closer to our house tomorrow. Reagan was good the rest of the day. Thankful that she seems to be feeling better.

Tuesday, September 12, 2017

Whiny day

Today we finally have a nurse! This lack of nursing is already killing me. Boy I hope they can find someone soon, but it's not looking hopeful. Reagan has been OK most of the day. She was able to tolerate both PT and OT pretty well, but overall she's just been a little off today. Just whiny and a little moody. Seems like her tummy might be bothering her. Gas pains or constipation maybe? Wish she could tell us. Tonight she was especially difficult to get to sleep. I eventually had to give her clonidine, but that only made her nuts. Hoping she can settle down soon and go to sleep. It's after midnight...:(

Monday, September 11, 2017

An uneventful outing

No nurse today. It was just another hang with mommy and grandma sort of day. Reagan slept well last night and then nausea did seem to be better this morning. Granted...she only got pedialyte last night...so the real test was adding back formula today. I moved it a little more quickly than usual. Normally she gets straight up pedialyte all night, then half/half (pedialtye/formula) til the pedialyte is gone, and then just formula (last night it was only the last 200mls). Today I only did about 300mls half/half and then just switched over to full strength formula. She seems to be doing OK with it. She had speech this morning, which she did fine with until the end when she started playing possum. She perked back up almost immediately after her speech therapist left. Silly girl. Her teacher/vision therapist came this afternoon and she did well with them. Her vision teacher brought some new toys for her and she seemed pretty interested in them. Tonight there was a Kendra Scott fundraiser for the UMDF in downtown Austin. Reagan was a little kooky and started crying right as I loaded her into the car, but we just decided to give it a go. She calmed down after we got going and was good the entire time. I wish I could say the same for her bother! He was a MESS. Kendra Scott (or any jewelry store for that matter) is not a good place for a kid like him. We eventually just packed back up, tried to go to Hopdoddy for dinner but it was super crowded and not very handicap friendly. We left Hopdoddy empty handed and headed home, stopping at P Terry's on our way home for burgers! Ryan was so hungry, he actually ate TWO! Insane! Crazy boy. She got upset again the second we took her out of the car when we got home. She's cried off and on til bedtime. No clue what's going on. Poor girl. Hoping she can turn things around and have a good day tomorrow!




Sunday, September 10, 2017

Can't shake the nausea

Reagan slept OK last night and woke up this morning alright. We slowly added back her formula today. All pedialyte in the morning, then half/half the rest of the day, then the very last of it tonight was full strength. We started noticing some issues at only half/half. Some fluid started draining from her tube. The second we tried to add undiluted formula...tons of fluid draining from her g tube. And nausea. Yep, the nausea was back full force with the formula. Tons of gaggy mouth movements. Ugh. Not good. Not good. I guess it's back to pedialyte again tonight.

This girl loves her Grandma.
Not feeling hot but Grandma can get a smile out of her!

Impromptu front yard photoshoot for my boy...he's such a ham!





Saturday, September 9, 2017

Nausea

So I switched Reagan over to pedialyte last night and Daddy was able to get her to sleep in her bed. I was worried about her laying down, but I turned her monitor way up and just hoped she would stay asleep. I woke around 5:45am to her making noise. She was awake but she seemed OK so I tucked her back in and elevated the top of the bed a little. When I came back from my run, I found Ryan awake and waiting for me downstairs, but Reagan was back asleep. She woke up for good around 8am. Thankfully she was in a good mood and no longer seemed nauseous. She was good the rest of the day...until tonight. I think it must've been the slow transition back to formula. Last night she was on 100% pedialyte. This morning I added formula to the pedialyte so she was getting a 50/50 mix. Then tonight I gave the last 200mls as just formula...and that's when the nausea came back. It was subtle at first. Just a little choke here and there. Then it was a few choke/cough/sneezes. And then the gaggy mouth movements and spit pouring out of the mouth. I hooked her up to the drain earlier today and nothing came out. Tonight, it was back to a steady stream of clear fluid. Ugh. What is going on? Why the sudden increase in nausea? Back to pedialyte again tonight. Hoping this goes away quickly! My girl just finally put on a couple pounds, I'd hate for her to lose them over one bad bout of nausea!

Friday, September 8, 2017

Throw ups

Reagan slept well last night and woke up today feeling better. Thank goodness. Sweet girl. She had a make up session of school this afternoon. When getting her into her wheelchair, she had a big throw up. And then another. And another. Ugh. No real sign of nausea. Not really gaggy/retching. Just what appeared to be random throw ups. Just clear fluid, thankfully no signs of formula. I did decide to go ahead and switch her over to pedialyte over night. Hopefully allowing her tummy to rest will help this pass. Since we can't really trust her laying down in her bed, we have to put her in her tomato chair tonight and keep her upright. I hate her sleeping in her chair, but it's the safest option we have with her throwing up like this. Really praying the pedialyte does the trick and this goes away.

Cute pics of Ryan and Grandma at Grandparents lunch today!



My girl, not feeling well. :(


Thursday, September 7, 2017

Getting there...

Reagan slept last night, in her chair, but she slept. She woke up this morning and was still very stressed. She'd fall asleep and then wake up crying off and on. Thankfully she was able to sleep on her own and tonight she finally woke up and seemed to be much improved. She was calm, still serious, but OK. Grandma and I were able to give her a much needed bath and I think she had to feel better after that. As of now, she's asleep in her own bed. I hope it stays that way. Praying my girl will wake up feeling much improved tomorrow.

Wednesday, September 6, 2017

Not again

Reagan slept well last night, albeit in her chair, but we were thankful for sleep nonetheless. She woke up very tense and serious. She eventually seemed to calm down a little and then dozed off and fell back to sleep. When she woke...she was a completely different child. Screaming, crying, biting; she was miserable. She definitely seems to have taken a turn for the worse. It would now seem she's having a full on bad day (hence the bad day smell we've been smelling). On a good note, the pain medications seem to be helping her and she's been able to sleep some of the bad away. Really hoping a switch flips soon and she can get back to her smiling self. Please keep praying for my girl.

Tuesday, September 5, 2017

Gaggy

So yesterday afternoon we noticed a bit of gagging from my girl. I was just hoping it would be short lived and it seemed to be self inflicted from her shoving her hands down her throat, but apparently it's more than that. She was quite gaggy last night and very restless. Mike couldn't get her to fall asleep in her bed and eventually had to move her to her chair, because we couldn't leave her awake and gaggy in her bed. She was just NOT falling asleep. Very vocal, very active. And there she sat. Awake the entire night. I don't think she ever dozed off once. And she was awake all day today too. She was still nauseous, but thankfully she was in good spirits. She had PT, OT, and school and did surprisingly well for all of them, all things considered. PT and OT were able to get in a lot of stretching, which was good because she's been so tense. She has a distinct bad day smell about her. It's her breath. This weird acidic (almost smells like blood) smell. Mike and I both recognize it all too well. There's also lots of tooth grinding and a very serious face, but every now and then she'll still give us a laugh. Poor girl. She just looks SO tired. And then the retching/gagging. It's so hard to watch. Tonight I'm switching her over to pedialyte. Not sure if it will actually help, but at least it will give her GI system a rest. Hoping and PRAYING my girl can get some sleep tonight. Please keep her in your prayers!

Monday, September 4, 2017

Kookypotamus

My girl is still kooky! And still hanging in there. She was up a lot last night. Very vocal and squirmy. I had to move her back under her covers more than once. I do think she went back to sleep though...even if just for a little bit. She's continued to be active and vocal today, going at that hand a lot and pulling at her face. We did have a nurse today and she tried her best to keep those hand out of her mouth. Reagan took a little nap around lunch time and woke up considerably more tense. We gave her a bath and that seemed to help a little, and she's been fine the rest of the night. Still super squirmy (and vocal) but good. Hoping she can settle down and get some sleep tonight. Last night wasn't the best night's sleep for any of us (well except Ryan, he stayed put so that was good). We've got a busy 2nd week of school so hopefully she stays happy!

Sunday, September 3, 2017

Visit

Today was very similar to yesterday for my girl. She was vocal and a little kooky, but OK. We even went on a little road trip to Mike's sister's house, who lives a little over an hour away. We did go ahead and put her noise cancelling headphones on when we put her in the car, because she immediately got a little kooky/vocal. It was a long drive but both kiddos did well. We kept those headphones on the entire time at his sister's and she did fine. A little kooky but fine. Ryan had a blast playing with his cousins and petting baby chickens. Mike got to visit with his sisters and parents. Good times. We got home just as it was getting dark, just in time to do medicines and get everyone ready for bed. Got a long run in the morning so hopefully everyone behaves and we can all get some sleep tonight.



Saturday, September 2, 2017

Easy going Saturday

Everyone slept much better last night. A big part of that was that Mr Ryan stayed put in his bed until morning. We were all pretty exhausted last night, so I had my fingers crossed. We've had an easy going Saturday. A lot of just laying around. Reagan has been pretty laid back for the most part. Still super sensitive to talking (mainly me talking)...we've had tears a few times, but she quickly recovers. Other than that she's been great today. Talkative and happy. Still chewing on that hand. I had to take it away from her this afternoon when I noticed it was completely discolored and shriveled up beyond recognition! This girl. Hoping she hangs in there and continues to have a good labor day weekend!

Friday, September 1, 2017

Me and my girl

Just me and my girl today. Thankfully she has been wonderful today. I'm actually kinda glad that she and I got to spend this time together. It's amazing how much better of a nurse I am when I am able to give her my undivided attention (with brother in school). She's been super precious today. Very sweet and smiley. Not a fan of me talking to anyone other than her though. I had to be careful with that because we almost had tears a few times when I was talking to Grandpa and our neighbor! Other than that she's been pretty laid back today. Happy to just roll around on the floor (chewing on that hand). Finally tonight I had to put it in a restraint to try to give those fingers a break. She's relentless. Hoping for a good weekend for my girl!

Looking super laid back after her bath this morning!

Now, that's more like it! Spunky girl...

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!