Thursday, April 30, 2015

Not as serious

Reagan slept well last night, waking up right around 7:30am but then laying quietly in her bed til 8am when her nurse got here. She's still been serious today, but not quite as serious as yesterday. She was very sensitive this morning, specifically to any air on her face (whether it be moving too quickly in front of her or even your breath). She had PT this morning and OT this afternoon and she wasn't super into it. She was more passive, not really wanting to participate in her stretches or activities. She took a nap right around 3pm (just in time to fall asleep for school), but woke up only an hour or so later. Her teacher was still at school so she decided to just come over for a late session. Much to our surprise, Reagan had a really productive session! She was actively participating and using her switch perhaps better than she ever has! She was very intentional with it and her teacher was very impressed! Tonight she's been very laid back and dozed off around 9pm. I moved her to her bed at 10pm and she was OUT. It's looking like another good night's sleep for my girl tonight!

Wednesday, April 29, 2015

Super serious

Last night was another great night's sleep! Probably even better than the night before because Reagan didn't wake up! She kept sleeping and slept in til about 11am. When she woke up, she was very serious. A definite shift in mood. I honestly anticipated this because of her being so extremely still last night. I'm just thankful that she didn't wake up crying! She fell back asleep and slept a good chunk of the day away (and fell asleep early tonight). And even though she's been serious, she hasn't been showing any signs of being upset (furrowed brow). She's actually been a pretty cute serious girl! Big eyes (when awake) and making pretty good eye contact! Hoping she can hold it together and wake up in a better mood tomorrow.

Tuesday, April 28, 2015

Sweet girl and sleep at last

Reagan finally slept last night! Whew! Thank you Lord! She went to bed early (well, early for her 10:15pm) and woke up around 4:30am but was very sweet and smiley and just laid in bed til around 6:30am when I finally moved her to her chair. Based on the previous 4 nights, that WAS a good night's sleep! She's been in a really good mood today. Very sweet. Fairly laid back. She had OT and school/vision today and did well with both. She's been super sweet and smiley all day and tonight...VERY still. Super still and drooly. Lots of spit, but thankfully not choking or gagging on it (letting it just drip out, which is truthfully MUCH better). Tonight the new nurse came and worked a shift. She's young but grew up with a brother who had some special needs, so she should have a head start on understanding basic care. Reagan couldn't have been better and was even dozing off and on, but just couldn't quite stay asleep. Finally (around midnight) I decided to give her some clonidine and that's what finally helped her to fall asleep and stay asleep. Unfortunately it doesn't always work that way (sometimes doing the exact opposite...making her super agitated and hyperactive), so I'm always a little hesitant to give it to her now. Hoping for another good night's sleep for everyone! 

Monday, April 27, 2015

Too many sleepless nights

Last night was unfortunately another really bad one! Reagan was yawning a bit and even dozed off on her own for a bit, but 5min or so later she woke back up and was super agitated and nauseous! Lots of gaggy faces. I gave her some clonidine, but it didn't seem to have any effect on her. I tried laying down with her in her bed, but that wasn't cutting it either. She just kept arching her head back and gagging! Finally I put her back in her chair and just held her arms down to keep them out of her mouth (cried a little) and she eventually settled down and fell asleep. It was after 1am when I finally got to bed. She woke up multiple times and fussed a little here and there (there was a big storm moving through so that probably didn't help) and around 5am she was up for good...but SMILING! Whew! Talk about relief! I am exhausted (and I'm sure she is as well), but I'm so happy to see her happy again. She's been very vocal and spunky today. Big huge inquisitive eyes. Super smiley. Still sticking her fingers down her throat (and choking) and fish hooking herself, but smiling the whole time. We did have an unfortunate misunderstanding with our new nurse that was supposed to start today. For whatever reason (even though I had been telling the agency for weeks we HAD to have someone Monday), she didn't realize she was working today. So 8am rolls around and no nurse. I contact the agency and they get a hold of her, sorry, she can't work. She has other plans. Ugh. I was NOT happy. Thankfully we have a great friend/neighbor who was willing to come sit with Reagan while I ran Ryan to and from school. It was a busy day for therapies. Reagan had speech, PT, & OT that kept her busy! She's still very tense in her body...those bad days really take their toll on her physically. Both PT and OT worked and worked with her trying to get her to relax. Tonight our wonderful Tues-Fri nurse came in to help out, since my Dad was still recovering from the same stomach bug that plagued us all last week! Reagan has been a real sweetheart so I'm really hoping and praying that tonight will FINALLY be the night we both get some sleep! Thank you for keeping our sweet girl in your prayers!

Sunday, April 26, 2015

Prayers for a good week (and sleep)

Sleep was not good again last night. Reagan was still very high need and I had to get up multiple times to try to settle her back down. Not good. Another exhausting night. She's still been very tense and high need today. Very kicky. Constantly sticking her hands down her throat and choking herself. I put the blanket over them and she pulls them out and puts them back in her mouth! Over and over again. She's also doing a lot of tooth grinding, which is hard to listen to. I'm really PRAYING for some sleep tonight. I've seen a couple of good yawns tonight so I'm cautiously optimistic! Hoping my girl can get over this yuck hump and get back to her happy easygoing self! Prayers for a good week!! New nurse works her first day tomorrow! Prayers for that as well!

Saturday, April 25, 2015


Reagan did not sleep well last night. This morning it seemed that maybe she had turned a corner, maybe, but then the whining started up and she's been pretty tense and fussy all day. Not really crying, more of a moan/fuss. Very high need. Very into her hands. Super moany. Very spitty/chokey. It's been a pretty miserable day. Medication isn't helping at all. She's still way off and this has been going on way too long! We all need some sleep and we need her to calm down and get back to normal! Ugh. This is exhausting.

Friday, April 24, 2015

Relentless bad days

It's been another brutal day for my girl! It started off with a horrible night last night. She slept in her chair but still woke up every 4hrs or so as her medicine would wear off. Again, clonidine was not at all helpful and the only thing that seemed to help was oxycodone. It was a loooong night for both of us! Today she's been the same. There was a glimmer of hope this morning where she even smiled and laughed and seemed like she might have turned a corner...but that only lasted a few minutes! Shortly thereafter the crying started back up and ever since if she's awake, she's crying. It's a little more of a moany cry now, but still a cry. Definitely won't be making it to the UMDF day at Morgan's Wonderland tomorrow. We thought maybe we'd finally get to go this year since we're so much closer now. Unfortunately, even if she has a complete turnaround tomorrow, we're going to need to spend the day relaxing and recovering! Oh well. It also wasn't the best day to be doing an orientation of a new nurse, but it's not like we get to pick and choose with Reagan. We're hoping maybe we've finally found someone who can work weekends again and maybe we can finally get back to going to church! Today we did have a little meeting at school with Ryan's teacher. She assured us that they are seeing progress and she gave us some ideas on things we can be working on with him at home (especially over the summer). He really is such a sweetie...I know he gives them a lot of grief, but he's also just so lovable and smiley, you just have to love him! Tonight Reagan had a small window where she seemed to be feeling better. She wasn't moaning/crying anymore, I was able to fix her hair, and give her mouth a good cleaning. She was doing a lot of licking and smacking her lips...I think her mouth was just so dry from all of the crying! I gave her some swipes with a wet toothette and I think that helped. Unfortunately the improvement didn't last and before long she was back to moaning again. She just dozed off with the help of oxycodone so I'm hoping she'll stay out for a little longer this time. We all need some rest tonight. Hoping for a much, much better day for my girl tomorrow. We really appreciate any prayers you can send up for her!

Thursday, April 23, 2015

Definite BAD day

Well, I hate to be right, but I was right. Reagan woke up this morning around 7am CRYING. It was definitely coming in waves, because she'd be OK for a couple seconds and then it would it again and she'd start back up. Poor thing. I gave her a dose of oxycodone and she dozed back off. She slept for a little more than 4hrs and (just as the medicine was wearing off) woke back up crying. A very sad cry. She was still sleepy, but she couldn't stay asleep. She would doze off for a few seconds and then wake back up crying. Eventually (and hour or so later) we gave her a dose of clonidine...although right as we were giving it to her, she dozed off, so I think it was definitely too soon to the be clonidine. Unfortunately her day (and night) continued like this. Oxycodone seemed to be the only thing that worked and it would last approx 3-4hrs. Sometimes she'd wake up and cry for an hour or so before we could give it to her again, sometimes it would take that long to work. We've kept her arm restraints on most of the day, since it seems to help stabilize her arms and keep them from waking her back up! One thing we're really kicking ourselves about today...we should've gotten a urine sample from her yesterday! For months, we were supposed to collect a urine sample from her on a "bad day" or on a day when she was showing the signs of leading into a bad day ie "bad day smell". In hopes that they could find something in her urine that indicates why she goes into these cycles. Yesterday would have been the perfect day to do it. She was calm and still but the "bad day smell" was stronger than it's been in a very long time. But we didn't. It's just been so long since we've even thought about it, it just wasn't fresh on our minds. We won't make that mistake again! Hoping she can sleep tonight and wake up MUCH better tomorrow! Keep that in your prayers...

Wednesday, April 22, 2015

A little TOO still

Reagan slept well again last night and woke up this morning around 7:30am. She was still very still and relaxed, with the faintest smile on her face! Such an angel! She's been a great girl again today. Very laid back...however, not a fan of us talking (anytime we tried to talk amongst ourselves, she'd get borderline tears), but other than that...great! She was again a little too loosey goosey for therapies! She had speech and PT this morning and she was just not that into it. She and I wore matching shirts today. I love these shirts from the Gwendolyn Strong Foundation! I had been eying them for a while and finally got Reagan and I matching ones! We also did our nails! Reagan's nurse did most of the work on Reagan (I just tried to hold her still) and then I did my own. Love these Jamberry wraps! Maybe not the best thing for my girl's fingers...she's already gotten two off (can't keep those hands out of the mouth)...but for her toes, they're the best! And putting them on is so much easier with the heater! Her other nurse bought the little Jamberry heater for her for her birthday, so this was the easiest application yet! One thing to note...we're seeing a lot of signs of impending bad days today. Even though it's been a great day for her, she's having big time temperature dysregulation (her back is getting super sweaty), she's got a definite "bad day smell" coming from her head, her lips are getting very dry and crackly (I swear her saliva must get more acidic on bad days because her lips definitely pay the price), and she's been just a little TOO still for 2 days now. Hoping she can get some sleep tonight and prove me wrong tomorrow?!?!?

Tuesday, April 21, 2015


Reagan slept well last night and woke up in a great mood today! She's been very laid back and calm all day. Not too much going on today. We got in a long overdue bath and then she had two therapies this afternoon. OT and school speech/vision teacher. Wasn't super into either, but she did OK with them. Probably a little too laid back for therapy. She's been less gaggy today but still a little chokey. I think because she's so relaxed. Everything relaxes and then it makes it difficult for her to control her spit! Hoping she can sleep tonight so we don't have to worry about her choking! Ryan was definitely feeling better today. He had throw up in his bed this morning, so he earned himself another day at home. But other than that, he's been fine. Hopefully that's the last we'll see of a stomach virus for a very long time! Double yuck!

Monday, April 20, 2015

Horrible stomach bug

Last night was an AWFUL night for both my mom and Mike! They both threw up A LOT. Both at one point during the night thought they were dying! It was awful. Then this morning Ryan wakes up and seems perfectly fine, drinks half a cup of milk and then proceeds to projectile vomit it all over the kitchen!! Ugh. No school today for him! (He also had 4 loose diapers which is the other symptom of this particular bug.) It hit everyone in our house! Talk about contagious! Our Tues-Fri nurse was super sweet and agreed to work today, knowing that I wasn't going to be up to par and since she had to miss two days last week. We called off all therapies and kept Reagan quarantined up in her room all day away from all of the sickies! It seemed to hit Grandma the hardest, she was having a hard time keeping anything down. We were all very weak and lethargic. Both me and Reagan's nurse had the hip pain...another odd symptom of this horrible bug. Tonight everyone seems to be feeling better (except Grandma). Hoping this is the tail end of it and what we saw with Reagan on Friday was it for her. She's been making some gaggy faces (more spitty and draining more fluid from her g-tube), especially this afternoon/tonight so that always makes us a bit nervous. Prayers for this yuck to be done and over with!

Sunday, April 19, 2015

Sick house

Reagan slept well last night and woke up this morning in a much better mood. Still a bit serious, but not serious/mad like yesterday. She's having really odd smelling wet diapers...wonder if that's somehow related? Unfortunately, I woke up feeling super sick today! We've definitely got something going around! I'm still very achy, super nauseous, fever, and having some GI issues. Not good. I haven't eaten anything other than dry toast or saltine crackers today but I still feel SO sick! I'm hoping this goes away quickly. Really not good that we don't have a Monday nurse right now...thankfully our regular nurse (who is off on Mondays) is going to pick it up! Grandma is here so we did get a much needed bath for my girl this afternoon. She feels like a new girl! We even heard a few laughs out of her when Daddy made a noise! She's been such a good girl all day today. Making it easy on me since I've been pretty much out of commission! Unfortunately both Grandma and Daddy are having symptoms tonight. Not good. Lots of prayers for quick recoveries and that Ryan & Reagan avoid the worst of it! 

Saturday, April 18, 2015

Very serious

So last night we switched over to pedialye and were were able to get Reagan to sleep in her bed (with the head significantly elevated). She slept well and even slept in! She was awake for a few hours maybe 11-2. She was VERY serious. The eyebrows were furrowed and the lip was out! Thankfully, other than a few burps here and there, the nausea seems to be gone. She's obviously still not feeling well, she fell back asleep and slept for a few more hours this afternoon. When she woke up she was a little less serious and a little more laid back. Hoping she's done with the worst of it. I've been having some leg pain today (like an achy sort of nerve pain) in my knee and tonight in my hip! Hoping I'm not coming down with something. Hopefully everyone has a better day tomorrow!

Friday, April 17, 2015

Sick nurse, sick girl?

Reagan finally slept last night!!! She woke me up around 5:30am...but I'll take it! She was super cute and sweet this morning. Very smiley. Very still. I told Reagan's nurse to just stay home today and I played nurse again. Reagan did have a bit of an explosive diaper this morning, but I didn't think too much of it. She seemed fine. She had two therapies this morning, speech and PT and she did great with both. Then this afternoon she was very groggy. She seemed a little chokey too. I couldn't tell if she was having drainage or what but her throat just sounded gunky. Then everything went south. She threw up! I don't remember the last time she threw up. And it continued...lots of throw ups. She was still very sleepy/lethargic but kept waking up long enough to throw up! Ugh. I really hope this is just a quick stomach virus and not a trend in the wrong direction. Please keep her in your prayers! I'm not even sure what we're going to do with her tonight. The only safe way for her to sleep may be in her chair right beside our bed! Ugh. Not good.

Thursday, April 16, 2015

No sleep but cute

Reagan did not sleep much again last night!! I had to move her to her chair around 1:40am. She was very vocal and wide awake (and making sure everyone else was awake as well)! She was sweet and in a good mood though so that's good. On a really bad note...Reagan's nurse is sick! She came in this morning but she had gotten sick on her way in! She thought she was going to be OK, she just kept her distance from Reagan, but then an hour or two later she got sick again! She went home and I played nurse for the rest of the day! (I'm a lousy nurse by the way...I'm so out of practice!) Reagan had OT and school (and school OT) this afternoon so she stayed busy. She's been super cute again today. I'm really hoping for some sleep tonight though. I'm exhausted!

Wednesday, April 15, 2015

Cute and spunky

Reagan did not sleep much at all last night. She was very restless and vocal and I eventually had to just move her to her chair. She's been super sweet though and had a really good day. She had speech and OT this morning and did well with both. The picture below is her working on kneeling during OT. She was super cute and spunky! Then this afternoon she had vision and did really well with that too! She was still very vocal today but a little less kooky! Hoping for some sleep tonight...

Tuesday, April 14, 2015

Gassy girl!

Reagan slept last night!! Wasn't sure that was going to happen, but she did. She woke up bright and early though. Right around 5:45am. Mike tried laying down with her, but she was just too kooky! I moved her into her therapy room and she settled down a bit. I laid back down and she fell back to sleep as well. She woke back up around 7:15am and was very vocal again (she's also been grinding her teeth a lot). She's been this way all day. We still suspect tummy problems. She's been having major gas issues lately. I mean serious gas! Getting tons of air when we vent her g-port (sounds like a wind tunnel). Today her nurse finally called the GI doc and got an order for simethicone (gas drops). It's worth a shot. We have to get it in her stomach though so that either means putting it through her g-tube (normally everything goes through her j-tube) or giving it to her by mouth! It's only a half a dropper, so I think she could handle a drop at a time, but we'll see. I remember giving her those often as a baby because she had so much gas, but it never seemed to help her. We'll see. I also bought some Hyland's natural gas drops...I figured if the simethicone doesn't work, we can give natural a shot!?!? She had OT this afternoon, followed by school. She actually did surprisingly well with both...all things considered.

Monday, April 13, 2015

Vocal and kooky

Reagan slept well last night and woke up vocal but stable. She's been very kooky and vocal all day. She did have a bit of a crying incident during speech, but she made it through. She had PT afterward and did a little better with that. She's been having a lot of bowel sounds all day...her tummy is definitely giving her some grief! I helped her go before OT and poor girl, she's a clencher! I don't know how she can clench in loose poo like she does, but she can! And you know holding it in like that has to cause major tummy cramps! Ugh. Wish she would listen to Elsa and just" Let it Go"! Tonight she was still pretty kooky. And still sounds congested but tonight when I used the nose sucker on her, I got nothing (a big difference compared to yesterday)! Hoping she'll sleep tonight but not holding my breath!

Sunday, April 12, 2015

Sleepy, moany day

Reagan had a weird sort of sleepy day today. She slept in this morning and didn't even get out of bed til 11am! She had a pouty lip and even a few tears (no crying just tears) when she first woke up but managed to hang in there. She wasn't awake for long before dozing back off. She was very congested today, but still trying her darnedest to breathe out of her nose! We've all had runny noses the last couple of days but today it was at it's worst for my girl. When she would wake up, she was in a half awake/half asleep state. She was moany and would keep her eyes half open. A lot of swallowing and smacking her lips...I think the sinus drainage was driving her nuts! She honestly spent the majority of the day asleep, and when she was awake she was ify. Hoping she can hang in there and have a decent day tomorrow...I'm not really sure what to expect!

Saturday, April 11, 2015


Reagan slept well again last night and woke up this morning a sweet smiley girl. She's been pretty precious today! Very smiley and sweet. We took a little drive this morning to go pick Daddy's truck up from the shop (he dropped it off while he was out of town). We made a pit stop for some unneeded calories at the famous Round Rock Donuts. I think I was in a sugar coma for most of the day. When we came home, everyone was a little worn out. Reagan, Ryan, and I all took naps this afternoon (while Daddy watched golf). Rarely are both kiddos sleepy at the same time! It was nice! Reagan actually took an extra long nap...I eventually kinda had to force her awake. She did finally wake back up though and was super bright eyed and precious! It's been a really great day for both kiddos! Love it when everybody is happy!

(Spoke too soon...putting Ryan to bed tonight was hell! Not sure what was wrong with him but he just kept crying and asking for Daddy! Ugh. Hopefully he's not getting sick or anything!)

Friday, April 10, 2015

A good night

Reagan slept well and woke up this morning a little kooky but OK. Still having lots of chorea. She's also been particularly vocal when I am in the room or talking to her nurse (and not necessarily vocal in a good way). No therapies today so it was just an easy going sort of day. She really seemed to mellow a bit after her bath. Tonight, in particular, she's been a lot more calm and laid back. Daddy came home this afternoon after a week in Mexico (for work)! Everyone was very happy to see him. We were very blessed that our nurses stepped in and helped me out while Mike was gone. Every night we had nursing until 10pm which was a huge blessing. And even better, both kiddos really behaved themselves and Mike was safe in not-so-safe Mexico! Thankfully tonight we're all back under one roof and hoping for a great weekend!

Thursday, April 9, 2015

More chorea but good nonetheless

Reagan slept well again last night (thank you God)!! She woke up this morning still pretty tense with a lot more chorea. Definitely having longer bursts of chorea today with a lot more frequency. Still sweet though. She's been pretty congested yesterday and today...I'm really just hoping it's allergies (because I've been pretty miserable because of all of the pollen too)! Not a lot going on today. Her OT has been out all week with the FLU (poor her)!! So today the only therapy she had was a make up session of PT. It was good though, she had her up in her stander making choices with her eyegaze computer. Of course, after about 15-20 min in the stander we heard a big poo-splosion and had to immediately evacuate! Thankfully there was no leakage on anything, so we were all good! And even better, she had two poos today on her own, so that's always a good thing. Tonight she stayed up a little later than the last several nights but finally started to doze off around 11pm. Hoping she has another good night's sleep tonight (despite all the chorea) and wakes up tomorrow with some smiles!

Wednesday, April 8, 2015

Not as serious...and sweet!

Reagan slept well last night and even slept in a little this morning! She woke up still serious, but a little more relaxed than yesterday. She's had a busy day though with speech and PT this morning and school/speech therapy this afternoon! She was a little groggy off and on today but she pushed through it and was a super sweet girl! She'd have little bursts of energy (chorea) today off and on but overall not too bad of a day! She dozed off right around 9-9:30pm again by herself and made the transition to bed very easy on me! Sweet dreams, sweet girl!

Tuesday, April 7, 2015

So serious!

Reagan slept well last night and even slept in a little, but woke up very serious this morning. She was pretty tense and not a smile was to be seen all morning (when she was awake). She wasn't a fan of diaper changes and just pretty much didn't want to be messed with. She took a long nap and slept most of the afternoon and when she woke up, she seemed slightly less tense and not quite as serious. The seriousness continued all night but that didn't stop her from being precious! She dozed off on her own around 9pm...hoping she can avoid the bad days! We'll take serious over bad any day!

Monday, April 6, 2015

Calm, cool, and collected

Reagan slept well last night and woke up very sweet and calm today. She's had a super laid back day. Maybe a little too laid back for Speech...she kept trying to doze off! Then we squeezed in a quick bath and then basically skipped PT and spent the entire time talking to the Freedom Concepts rep about the Chill-out chair we were demoing. We love the idea of a memory foam chair for Reagan, but the design of this chair is severely flawed (for our puts her in the "butt in a bucket" position). Thankfully, the rep said it's highly customizable, so we should be able to get extra layers of foam that we can add or take away (or even cut) until we get her in the position we want her in! He also mentioned another piece of equipment that might be a good positioning option for her and we're just waiting to hear back from him to see if we can trial that. This afternoon, Reagan's teacher and vision teacher came out to take advantage of this good/calm day. She did really well with vision, but was a little less responsive to the school portion! She's really just been super cool and calm all day. And that's why tonight we decided to do her Jamberry pedicure again! We have a set of wraps that are missing (the ones we wanted to put on), but we did put on some cute glitter pink ones (with a heart). Reagan was super patient and put up with multiple attempts on multiple toes!! Such a sweet girl. Tonight she fell asleep on her own and I got her successfully transferred into her bed! Hoping she sleeps well tonight!

Sunday, April 5, 2015

Happy Easter

Reagan slept a little better last night (I think). Ryan not so much! Mike could hear Ryan talking at 2:30am, then 6am, then 7:30am!! He's been a little sneezy and had a bit of a runny nose, so I'm just hoping it's allergies and he's not getting sick again! Reagan has had another great day today! She's been super smiley and sweet! This morning we took some pictures with the Easter bunny (Grandma). I think we got some cute ones! Then Mike's sister who lives in Austin came over in the afternoon. Ryan enjoyed having an audience and Reagan was just super cool and calm. She's had a very easy going calm sort of day. Certainly would've been a perfect day for a photoshoot, but something tells me the photographer wasn't available on Easter Sunday! Hoping my girl can continue the good streak and have a great week!

Saturday, April 4, 2015

Sweet but no sleep!

Reagan did not sleep well last night. She was very restless and we ended up having to just put her in her tomato chair. She was also very vocal and needy, so I had to stay in there with her for a while (until 1am). Finally, she wasn't asleep, but she was quiet, so I went to bed. I did wake up once and look at the monitor and it looked like she was sleeping, but when I woke up this morning she was wide awake and talkative (so who knows how much she actually slept). Maybe she was excited about Grandma coming, because an hour or so later, Grandma arrived! We took Ryan to a nearby Easter egg hunt (it was too windy and cool to take Reagan). Ryan wasn't super interested in finding eggs (he did a better job of it in our backyard), he preferred flowers and leaves! Afterward, we tossed him in a nearby field of bluebonnets to snap a few pics. We only had a couple minutes, otherwise he would've trampled them all! Reagan has had a good day today. She's been pretty vocal, but in a calm sort of way. Very smiley and sweet! Tonight she was super spitty and kept choking on it! She did doze off on her own tonight, so I'm hoping she'll finally get a good night's sleep! Tomorrow the Easter bunny is coming...

Friday, April 3, 2015

Full of air

Reagan has had a pretty good day today (all things considered). She's been very sweet and smiley this morning but a bit vocal. Maybe a little too vocal. Actually, we weren't sure how she was going to do with therapies but she did OK with a bit of speech but wasn't loving PT. As it turns out, she was having tons of gas and her tummy was visibly distended. We vented her g-tube off and on all day and a crazy amount of air was coming out! Poor thing! She was also a bit licky/smacky...I'm wondering if that could be reflux related. Despite the obvious discomfort, she was still super precious today! Hoping my girl can pull through and have a great Easter weekend! Grandma (the Easter bunny) is coming, so I know she'll be happy about that!

Thursday, April 2, 2015

Make A Wish Over the Edge

Reagan slept well last night (thank God) and woke up this morning a little cranky but no crying. I could definitely tell that her tummy was still giving her problems because right as she would start to fuss, she'd had a bunch of gas! She was only awake for an hour or so before dozing back off. She slept most of the morning and then finally woke up for a bit this afternoon. She was still VERY tense in her body...super crunchy and a little kooky but OK. Today I signed up Mike for a fundraiser for Make-A-Wish called "Over the Edge". You raise $1500 in donations and then you get to rappel down 38 stories of the W hotel in Austin!! I don't know about you but I'd raise $1500 to NOT do it, but I'm terrified of heights!!! The funny thing is, he's not particularly fond of heights either. He just likes to do things out of his comfort zone (he's such a guy)!! Anywho, hopefully he can raise the money in time to get one of the 200 available spots and do something that's a once in a lifetime experience as well as support a really great charity!! If you'd like to donate, click here.

Wednesday, April 1, 2015

Sleep off the bad

Reagan did sleep last night and this morning she just kept sleeping. It was nice to see her sleeping so peacefully after her rough afternoon yesterday and so many sleepless nights. Unfortunately, she was only peaceful in her sleep. When she woke up at 11:15am, she was VERY upset. Crying her breath away, her O2 levels were hovering in the 70s and 80s and she was a bit purple in the face. When she'd let up, her levels would go back into the 90s, but then drop again as she continued to cry and hold her breath. She did respond well to oxycodone (after about 30min) and she finally dozed off. We canceled all therapies/school and just prayed she'd stay asleep. When she woke back up a couple hours later, we tried clonidine and then ibuprofen. Minutes after giving her the ibuprofen, she doze back off (so it's hard to say what worked, more likely it was the clonidine finally taking effect). She woke back up right around 5:30pm and we were able to give her another dose of oxycodone. That dose didn't last nearly as long and she was back awake and crying at 7. You could tell it had to be her tummy bothering her. She'd crunch up in the tightest ball, she looked like a little rolly polly. Clonidine came to the rescue this time and she dozed off again. She did wake up one more time tonight, but by the time I changed her diaper and put her back in her chair, she dozed back off on her own! So it's been a day full of medications and crying! Poor girl. Hoping she'll stay asleep and sleep off these bad days!