Tuesday, September 30, 2014

Kooky and gaggy...what's going on?

Reagan woke up this morning a little kooky. She was very sensitive and went from laughing to crying in a matter of seconds. It definitely seemed neurologic. She was making weird breathing sounds and her cry was more of a blood curdling scream! Her heart rate was elevated and her O2 kept dipping to the high 80's low 90's and then it would go back up to 99-100% (over and over again). Finally she settled down with us keeping interaction/stimulation to a minimum. She pulled it together and managed to have a pretty good session with the vision therapist. Shortly thereafter she had PT and then OT this afternoon. All things considered she did really well. Her OT commented on how tight her body was and she did a lot of work with her trying to loosen her up. The rest of the afternoon she was good. A little less sensitive but still a little startle-y. Still holding her urine...she went this morning around 11 and then didnt go again until around 8 or 9! She's been very spitty today and sticking her tongue out a lot, but tonight it was nonstop! She was dripping spit but cupping it in with her lips and then choking on it. She was making gaggy faces nonstop all night! It was painful to watch. I just sat in front of her constantly dabbing at her mouth! Thankfully she dozed off when I gave her the clonidine and Mike was able to transfer her peacefully to her bed! Please pray that she sleeps the night through and wakes up without any nausea tomorrow!

Monday, September 29, 2014

Good but a little off

Reagan slept OK last night...she woke up at exactly 5:34am...a little early for my liking (one minute before my alarm went off)! She was good though, sweet and smiley. She had a busy day of therapies. Speech at 10, OT at 11:45, and "school" at 4:30pm. She did REALLY well with everything. It was a very good day for therapy! There still were a couple "little" things that were slightly off with her. She was holding her urine this morning (she hadn't gone since early the night before) and her temperature control was way off...very sweaty back and super cold clammy hands and feet! Last night and today and I did notice what we would call "bad day smell" on her head, but with her holding her urine, I haven't really had the opportunity to collect a specimen to take in to the lab! Tonight she was a little easily startled. She kept throwing her arms up in the air (never like seeing that..reminds us of seizure days). But she was still super sweet and smiley! A little spitty/foamy but good. She fell asleep fairly easily with the help of clonidine so hopefully she'll sleep through the night tonight!

Sunday, September 28, 2014

Good girl

Reagan has been such a good girl today! She woke up smiling and was sweet and smiley all day today! Very easy going, laughy at times, but over all just a sweet girl. So nice to see her recovered from those days last week! When she's in the middle of that, it feels like it's never going to end! But when she's good, she's SO good! It sucks that she has to go through the bad days at all, but I am still very thankful that at least she recovers and has good days once again! Hopefully she can have more good days this go round! One year ago today we were in Tulum Mexico for my sister's wedding! Reagan was recovering from a bad day but pulled it together just in time to make it to the wedding! It was such a beautiful wedding and despite not liking Mexico and being super anxious about having Reagan there with all of her medical issues, everything went well and we had a great time! My girl has always been a good traveler!

Saturday, September 27, 2014

Much improved

Reagan woke up this morning around 7:30 or so. I jumped up because I thought I heard her cough (and I was worried she was nauseous again), but by the time I got in her therapy room (where she was sleeping sitting up in her chair), she was fine. She seemed smiley and good. Thankfully, it turned out to be a really good day for my girl! We were nurseless today, we still haven't found a good back up nurse to work prn, and we're about to lose our weekend nurse that we loved so much! Thankfully we have an awesome weekday nurse who has been with us for over a year now, as well as a great night nurse who will be picking up weekends from now on! Reagan was sweet and smiley today. Still a little spitty/chokey, but otherwise OK. Tonight she is really fighting sleep...hopefully we can finally get her back in her bed!


Friday, September 26, 2014

Super nauseous

Reagan seemed to be better today in the pain department...she was back to her sweet smiling self...BUT she was plagued by relentless nausea all day long! She had 5 big throw ups throughout the day (and some of those were twofers...back to back throw ups). When she wasn't throwing up, she was gagging/retching! It was not good! Somehow she managed to tolerate both speech and "school" but her teacher did remark that it was the most nauseous she had ever seen her! It definitely got progressively worse as the day went on. Tonight it was so bad that I tried giving her her pm dose of clonidine much earlier. It didn't work though and she had a paradoxical effect to it (instead of getting sleepy, she got agitated and aggressive...even though her dr said this doesn't happen often with this specific medicine)! After an hour or so of watching her go through that, I tried giving her Lortab (sometimes the Lortab helps to reverse the negative effects)...that didn't work either. It seemed like she got even MORE agitated from it! After fighting to hold her down and keep her from biting herself for what seemed like forever, I was finally able to stabilize her legs (by crossing them) and she dozed off. When she gets like this, the only thing that ever seems to help is giving stability and pressure throughout her body. I'm hoping, hoping, hoping she sleeps tonight! (I'm switching her over to Pedialyte for the night, hopefully giving her tummy a break will stop the nausea). Please keep her in your prayers! 



Thursday, September 25, 2014

Another rough one

Reagan slept for most of the night but did wake up at 3am crying. I gave her some Lortab which helped her to eventually go back to sleep. When she woke up again at 7am, she was crying once more. I gave her Ibuprofen and even though she didn't fall back to sleep, she wasn't crying anymore. Well, for an hour or so anyway. The crying was off and on all morning. She was in and out of sleep, crying without even opening her eyes. It was another cancel all appts/therapies day. She did go for a couple of stretches where she was awake and OK. She laid on the floor for a while and even though she was tense/wide eyed, she was calm. That didn't last though and it was back to crying and sleeping off and on. It's SO hard seeing her like this! Two really rough days...nothing we can do to help her. Ugh, I hate this! This afternoon she went for a longer stretch without fussing/crying. She really seemed to have maybe turned a corner. But then tonight she was moaning a lot for the nurse while we were at Bible study. She gave her some clonidine which seemed to help. However, once we got back home, she started full on crying again! Poor thing! I'm hoping she can sleep tonight. She's very restless. She dozes off and then wakes back up a few minutes later crying again!



Wednesday, September 24, 2014

Brutal day

Well, Reagan decided to play the old switcheroo on us today! You know how calm and content she's been for the last two days? Well, she was the polar opposite of that today! I guess it was the quiet before the storm! She woke up this morning crying and has been crying every waking moment since! And it's a "I'm in pain" sort of cry! Not really what I sometimes consider a neurological event, more just pure pain. Ugh. It's awful watching her suffer and not being able to help. She's slept off and on today. Oxycodone seemed to help the most. We also tried more essential oils. The lavender/lemon didn't seem to do much this morning, although she did sleep a lot. Then this afternoon when she was crying a lot and seemed to maybe be having a migraine sort of pain (she kept swiping at her head), I tried peppermint in the diffuser and something called pan away diluted and rubbed it on her neck, shoulders, temples, and feet. She definitely seemed to enjoy having her neck/shoulders rubbed and dozed off while I was doing it. (I put it on my aching/cramping calf the other day and literally within seconds the pain was completely gone! It only lasted for 30min or so, but it worked amazingly well!) Not sure if it was the ibuprofen that helped or the oils but she did doze back off for a few hours. It's been a brutal day, I won't lie. I'm hoping and praying that she'll be able to fall asleep and stay asleep so she can actually get some decent rest!




I know it's hard to watch...but she did this ALL day! It's awful. She's breath holding too...it has to be pain!

Tuesday, September 23, 2014

Great day

Today has been another great day for my girl. She has been so laid back and still all day! It's amazing to see her so relaxed...not at war with her body and the constant movement that normally plagues her! Her arms are still and by her side, her legs are crossed or hanging down in front of her...none of the constant kicking and hands in the mouth/hair that we are used to! It's awesome! She had three therapies from 10-2 and did very well with them all. First her vision teacher came with the speech therapist from school, then PT came and a repair guy from the DME company (who was here to fix a motor on her bed) adjusted the headrest on her stander, and finally OT came and worked with her as well. By the time OT got her she was definitely a little worn out. Really with each therapy today she'd start out strong and then get more tired toward the end of the session. The vision teacher/speech therapist were telling me how Reagan was purposefully nodding yes or no to their questions! They said by the end, her nod had gotten a lot more subtle (she was obviously tired), but she was still "answering" their questions!! So if that wasn't enough, we decided to load everybody up and head over to the aquarium right after OT. When Reagan's doing well, we really have to take advantage of these opportunities! Ryan fell asleep in the car (taking his 10min nap for the day) and then Grandpa met us over there! Both kids seemed to enjoy themselves, although no one more than Ryan, sticking his entire arm into the tanks (almost all of the big tanks are "touch" tanks)! We all had a good time and headed home for a quick bath for Miss Reagan! We had an uneventful night and Reagan (who looked sleepy the entire day) finally dozed off around 10:30pm! Hoping for another great one tomorrow for my girl!!




Monday, September 22, 2014

Very laid back

Reagan had a good day today. She slept well and woke up slightly startled, but very calm and quiet. She's been very relaxed and laid back all day today. She had speech and OT this morning and did well with both. This afternoon her teacher came and she was great for that as well. She's been very wide eyed and still all day. If she's like this tomorrow, I think we're going to try another trip to the aquarium! (I need to restock tiny dolphins for Ryan!) Speaking of Ryan...I think he took all of Reagan's energy today! He's been CRAZY today! He slept in this morning and when I put him down for a late nap, he jumped and jumped and jumped higher in his bed until he whacked himself in the lip and started crying! I went and picked him up and he never went back down! So no nap! And then tonight when he should have been exhausted, he was still bouncing off the walls! Reagan was tired tonight but just not falling asleep on her own! She stayed up with us (we were watching a movie) until 12:30am and then Mike finally laid down with her. She was still kinda in and out of sleep when Mike finally went to bed! Hopefully she'll sleep tonight!

Sunday, September 21, 2014

Laughy poo girl!

Reagan slept the night through last night, but woke up around 6:30am. She's been a sweet, spunky girl today! And she's had FOUR poos (on her own)!! That's A LOT!!! She's got to feel better after that! She's been pretty laid back today. We gave her a much needed, relaxing bath this afternoon. Definitely had quite a few giggles throughout the day. Tonight she even laughed herself to sleep (she was still laughing even with her eyes closed)! Hoping she has another good night's sleep tonight and wakes feeling well rested and happy!

Saturday, September 20, 2014

Definitely better

Reagan had a pretty good day today. She slept in her chair again last night, but woke up this morning feeling much improved. She was fairly serious, especially in the morning, but she did give us some giggles this afternoon/tonight! She's been a little spitty today...making the occasional gaggy face. We're definitely keeping the Zofran going for a while. She took a couple of good naps today, but for the most part, she was awake and content. Her temperature regulation is still a bit off and she's getting sweaty but with cold hands and feet. Tonight she dozed off on her own and we transferred her to her bed. Hoping she stays asleep and wakes up feeling even better tomorrow!

Friday, September 19, 2014

Mitochondrial Disease Awareness Week

OK, so I'm a little late with my Mitochondrial Awareness Week post, seeing how the week is almost over! But better late than never, right?!?! Actually, I want to share a beautiful video that Jack's sister, Senna, made for her brother to help raise awareness! I posted this on Facebook, but for those of you not on Facebook, or those of you who haven't watched it yet, please take the time to watch it now! You won't regret it! It's far better than anything I could have come up with myself. There's also a little cameo of Reagan (along with many other kiddos fighting mito)!  I just want people to realize what we're going through. What our kids go through on a daily basis. What we're battling. You have to know the enemy to fight it!  We're getting together a team for the Central Texas UMDF Energy for Life Walkathon! If you are in the area, please consider joining us team Rallying for Reagan on October 19th at 1pm! This is not just about raising money...it's about raising awareness! These kiddos deserve a chance! They deserve a CURE!

It's been a rough day for my girl. She slept well last night. Like a log, really, but in her chair. So this morning we got brave and decided to try to move her to her bed. Did NOT go well! She woke up and it was downhill from there. When awake today, she's been crying nonstop! Thankfully, the majority of the day she has responded really well to medication and we've been able to get her to fall back to sleep fairly quickly. Tonight she did wake up and clonidine did not work to get her back to sleep. She was clearly agitated and very tense, but not crying. Eventually, she dozed back off on her own. We are not even going to attempt to move her! Hopefully she'll sleep the night through and wake up feeling better tomorrow! 

Thursday, September 18, 2014

Sweet sleep deprived girl

So last night was Reagan's 3rd consecutive night of ZERO sleep! Seriously, I have NO idea how she does it! She spent the majority of the night again in her chair. Clondine and Lortab weren't touching her at all! Thankfully, she was very laid back and content. There was a big rain storm and we felt guilty having her sit awake all night with that, but we were exhausted and just couldn't sit up with her (and she didn't seem to care). Despite zero sleep, she's had a great day again today. She's been super sweet and super relaxed. She had OT and PT this morning and did great with both. She was a little spitty/chokey today, but OK. We were hoping with her wide open afternoon, we could get her to sleep a little. Didn't really happen...not until later anyway. She dozed off for a bit late afternoon, then woke up and we gave her a bath, and then dozed again for a bit. Mike and I skipped Bible study and went out to watch some live music on 6th street (since we conveniently already had Grandpa coming over for Ryan and a nurse for Reagan). After we left, Reagan woke up and was super nauseous. She had already had Zofran only a few hours earlier. Her nurse gave her some oxycodone (since we hadn't been having luck with clonidine or Lortab) and that seemed to help her fall back to sleep. She woke momentarily a couple more times, but she didn't seem nauseous anymore and her nurse was able to get her back to sleep quickly. By the time we got home at 10:45pm, both kiddos were fast asleep. We went ahead and left her in her chair tonight, for fear that moving her would wake her up. Hoping that FINALLY my girl will have a good night's sleep (even if it's not in her bed)!

Wednesday, September 17, 2014

No sleep...again!

Reagan had another night of no sleep last night! She didn't last long in her bed and I had to get up and move her to her chair again. She had speech and "school" today and did very well with both (despite her lack of sleep). We kept hoping she was going to get sleepy and doze off at some point today, but it never happened. Thankfully, she was in a pretty good mood despite it all. It's amazing to me how she continues to function like this...on NO sleep! I know I can't do it! But she's alert, awake, and happy! It's crazy to me! She's been a little spitty today, so we went ahead and started her on round the clock Zofran. Hopefully that will prevent any nausea that's trying to rear it's ugly head. She's not looking sleepy at all tonight and clonidine still doesn't seem to be helping...hopefully Mike will be able to get her to fall asleep!                                  

Tuesday, September 16, 2014

Sweet but no sleep

Reagan did not sleep much at all last night. She went down around 11:30pm and by 12:30am she was awake, making noise, and kicking around in her bed. I got up, gave her some Lortab, and covered her back up, but I don't think she ever went back to sleep. Around 2 or 3am I heard her vocalizing a lot so I got up and found her sideways in bed once again. I decided to just put her in her chair at that point. She did seem a little more calm in her chair, but still not at all sleepy. No rest for the weary. I got up at 5:30am for my run. Reagan was still a little kooky/vocal this morning, but she mellowed out as the day went on. She's actually had a pretty good day! She had a super busy day therapy-wise. This morning she had a session of OT/PT/speech from the school, immediately followed by her private PT. Both went very well. Her PT was taking advantage of her tone and was amazed at how well she was sitting and bearing weight. Then this afternoon her private OT came and she was good for that as well. For no sleep and all of the therapy she had, she was quite the superstar today. She was also super precious and sweet. Lots of good smiles from her today and not nearly as excitable as she has been the last several days (her brother was ALL over her this morning and she didn't even seem to mind). The only negative is that she was a bit spitty. That led to coughing/choking at times and not really tolerating her bean bag chair, but she's been great otherwise. Tonight we had another battle of the clonidine though. I gave it to her and 30min later she was kicking and fighting, thrashing and biting! I held her as tightly as I could and eventually she fell asleep. Praying she stays asleep tonight. These sleepless nights are rough on her (and their not great for us either)!


Going Green for Mito Awareness Week! 



Being silly tonight...crunching in half, nearly kneeing herself in the face! 

Monday, September 15, 2014

Not too bad, but still kooky

It was an OK day today. Reagan (and Ryan) got up super early today at 6am! Reagan has been excitable from the get go. Very vocal and still a little kooky. There were definitely some times we had to lower the volume on the television or not talk because she was getting too excited! She had speech this morning but that was a bust. Just too much on a day like today. This afternoon she had OT and she was able to get a lot of stretching done, which was great, because she was very crunched up and tense all day. Lots of hand in the mouth, hands in the hair, curled up in a ball. Lots of high pitched vocalizations that sound like they are just seconds from tears. Lots of moaning. Still a little licky and sticking her tongue out a lot. We went ahead and canceled school. Definitely not a good school day. Tonight she continued to be vocal, but she held it together and had a decent night. Just wish she could relax a little! There was a bit of a freak out again after her pm dose of clonidine, but she eventually settled down and fell asleep! 

Sunday, September 14, 2014

A little kooky

This was the morning of my very first 5k. Reagan's nurse came in early and Grandma and I drove into South Austin for the "Run with the Heroes" run (honoring fallen heroes and their families from the Fire, EMS, and Police first responder agencies). It was crawling with cops...definitely the safest race ever! It was cold and started 45min late (Mike and Ryan got there before we even started), but we persevered and my running partner and I finished 9th and 10th in our age division with our fastest pace ever (30sec faster than our fastest)! We were pretty happy with that! My mom finished 1st in her age division and she got a medal, which she gave to Reagan! When we got back from the run, Reagan had dozed back off. She took a nice little nap but was awake all afternoon. She was a little goofy/kooky today. Slightly on edge, definitely sensitive. She had a big explosive poo in the morning and another tonight, so I definitely think her tummy was giving her a little trouble. Tonight I was a little sore from my run, but I had a girls night out with the ladies from my Bible study and left Mike and Grandma in charge of the kids. Ryan got a little crazy (and drove Reagan a little crazy), but they were good. Everyone survived a few hours without me. After I got home, Reagan was still excitable and wasn't really tolerating being held. She was also getting all licky and spitty, which had me a little concerned about nausea! Thankfully she fell asleep with the help of clonidine and we successfully got her to bed. Hoping for a good night's sleep tonight for everyone! 

Saturday, September 13, 2014

Super sleepy rainy day

Reagan slept well last night but woke up this morning around 7:30am with a shriek! We ran upstairs and she calmed down. I think she was just saying, "Hey! I'm awake! Someone come get me!" She was fine after that and got in some good Grandma time. She was still looking pretty sleepy though and as soon as her nurse changed her outfit and put her in her beanbag chair, she was OUT! She slept and stretched all day long, but never woke up! She finally woke up tonight right as the nurse was leaving. We brought her downstairs and she seemed to be awake...next thing we knew, she was out like a light again! Mike carried her up to her bed and she's been there ever since. Every now and then she'll make a noise or move around a bit, but she's not waking up! Definitely a sleepy day for my girl. It was a good day for it though, because it pretty much rained the entire day! A cool front came in and the high today was 66! Tomorrow is my first official 5K and the weather is going to be a little different from what I'm used to running in! It should be interesting! Wish me luck! Hoping for a good, awake day for my girl tomorrow!

Friday, September 12, 2014

Taking it easy

Reagan slept well last night. She woke up this morning around 7am content and even with a few smiles! She's been very laid back and mellow again today...but without the sensitivity. She's a lot more easy going and even her crazy brother barging into her room (and throwing the door open) didn't seem to bother her a bit! She had speech and PT this morning and did well with both. Then this afternoon she had school. She was very visually attentive, but her whole body was so relaxed, it was hard to get her to participate in school work! This afternoon and tonight we noticed that her temperature regulation was way off and her back was getting really sweaty and her hands and feet were very cold. She was a little more kicky tonight, so I let her roll around on the floor a bit. She's still got a gunky cough and runny nose though, so too much time on the floor wasn't a good idea either. I gave her clonidine around 10pm and she was falling asleep and ready for bed by 10:30. Hoping she wakes up happy and has a good day tomorrow. Grandma's in town this weekend, so I'm hoping she can enjoy it!
In the stander during PT...she doesn't look thrilled, but she didn't mind it!

Thursday, September 11, 2014

Super sensitive but still

Reagan slept last night for the most part. Around 5am she woke up and was moany and kicking around so Mike went in and laid down with her. She never fell back to sleep and around 6:45 Mike moved her into her chair and then the crying started! I gave her a dose of Lortab and that helped calm her down and she was calm but awake the rest of the morning. She did get a little stressed every time someone new would come into the room (like when her nurse first got here, or with a therapist, or me)! She did OK with therapy...she had PT & OT...everyone just had to be super careful with her (and work past a few tears). We never really figured out what was bothering her. In her body, she was very loose and still. She hardly moved her arms or legs all day. She was super sensitive, but didn't necessarily seem to be in pain (maybe it was just neurological). She started crying several times when I'd walk into the room and she did the same for Daddy. Thankfully we had her night nurse working last night until 10, so we were able to keep her content. At 10, I went in with her and finished watching Tangled with her. She didn't seem to mind me as long as I kept my mouth shut! Finally around 11, I gave her clonidine and she dozed off. She almost seemed like she wasn't going to make the transfer to her bed, she moved around and made a few noises, but finally she was out! Hoping for a good night's sleep tonight and a better (less sensitive) day tomorrow!

Reagan and her nurse Megan taking selfies! (At least she liked someone today!)

Wednesday, September 10, 2014

OK day, tense night (and new tube)

It's been an OK day for Miss Reagan. She slept in her own bed until around 7am or so. She was sweet but still a little sensitive today (especially to loud noises or talking). She had speech this morning and then we drove in to Dell to have her gj-tube replaced. It's been a little leaky, but she's had it for 4 months, so it's time for a new one (we're not waiting another 6 months again until it breaks)! Despite being told that 12:30pm was the ideal time for an appt, we waited 30min in a waiting room full of crying kids and then waited another 30min or so in the x-ray room for the radiologist! The radiologist was particularly chatty (not necessarily a good thing for Reagan) and when she abruptly pulled the x-ray over Reagan she nearly lost it! Well, she did lose it for a second, but we were able to calm her down and she was fine for the procedure. Everything went smoothly and we were on our way in no time. Reagan did seem a little agitated the rest of the day, we thought maybe her tummy was hurting her because of the procedure and the fact that she had a big gassy poo earlier in the day. She tolerated the teacher just fine but then wasn't a huge fan of the loud tv or her brother tonight. She was definitely tense and we weren't sure what was causing it. At one point I picked her up to change her diaper (and she did fine with that), but as soon as I tried to pick her up and hold her, she freaked out! Tons of tears! Lots of crying. I eventually just put her back in her chair. She calmed down but was never quite right the rest of the night. I gave her clonidine around 10pm to try to help her fall asleep and by 10:30 she was freaking out again and crying hysterically. Eventually around 11pm I gave her a dose of Lortab which finally helped her to settle down and fall asleep! I'm not sure what's going on with her. Is it tummy related, is it neurological?? No clue. I'm just hoping and  praying she sleeps tonight! Ugh. I'm still so on the fence on what to do. Do we change her over to the ketogenic diet now, do we wait?? I hate making these decisions! Please pray for us!

Tuesday, September 9, 2014

A little sensitive but OK

Reagan slept well last night (in her chair). She woke up this morning slightly sensitive to noises/talking, but otherwise good. She had vision therapy this morning and she actually did pretty well with that. Then her PT came with a couple of reps from Freedom Concepts and she was able to try out the DCP 16 bike! It's really neat and has a lot of options that she was lacking in her old bike! We're trying to go through our PT's company's charity in order to get it, but the majority of people get them through Variety Children's Charity. They are super expensive $3000-$4000, so getting assistance is a must! This is just one example of how expensive everything is for a child with special needs. With a "normal" child, you can just run out and buy a $50 bike...a $200 bike would be considered extravagant! Multiply that by 10 or 20 and that's what they charge for a special needs bike! It's CRAZY!!! Yes, there are a lot more modifications they have to make to these bikes, but it certainly shouldn't cost that much more! And that's how everything is. EVERYTHING is more expensive. Everything is more complicated. Everything takes more time and more energy!!! Everything is work...but this sweet girl is worth every bit of it! This afternoon she had OT and she did OK. Afterward we gave her a nice relaxing bath and she took it easy for a while. Tonight she was still pretty excitable/vocal...I think we narrowly escaped a meltdown! She did have a random bloody nose (in her right nostril)! I guess it could be from the saline and constant nose wiping?? She did finally doze off with the help of clonidine and Daddy laying down with her. Hopefully she'll sleep the night through! 


Monday, September 8, 2014

Sleepy but better

Reagan slept last night but she was very restless. She kept making noises and I'd jump out of bed and run to her side, only to find her already back asleep! So needless to say, it probably wasn't the best night's sleep for either of us. I was feeling pretty lousy this morning, so much so that I only walked today (it's the first time I've missed a scheduled run since I started running at the beginning of June)! I definitely think I've got whatever Reagan's nurse had last week (and Reagan is now coughing as well, so I think it's going around). When Reagan woke up this morning, she was much more relaxed. Unfortunately we did find some battle wounds from yesterday. She really did go at that hand...usually it's her fingers, but this time it was the base of her hand (below the thumb). So today we've just tried our best to keep it away from her so it doesn't become infected! She was still tense, but not upset or fussing like she did yesterday. She had a couple big poos today, so I'm sure that helped her tummy. She also took a really long nap, sleeping most of the morning and afternoon without medication (had to cancel most of her therapies). Tonight she was awake for a while, but then dozed off again on her own around 10pm. She woke back up and needed clonidine to fall back to sleep, but hopefully she'll sleep through the night (in her chair). She's still got a gunky cough and tonight she was acting a little gaggy. I'm hoping it's just drainage and not actual nausea. Please continue to keep my girl in your prayers!




Sunday, September 7, 2014

Sleep but bad day

Reagan finally slept last night! Thank God! She seemed to be sleeping very peacefully, arms up over her head, and she even slept in a bit (even sleeping through a big poo/pee diaper change)...so we were expecting good things. Boy were we wrong! She woke up with a frown and furrowed brow, which quickly turned into a full on crying fit! She was very crunchy and bitey, so her nurse pinned her left hand down (the one she likes to put in her mouth). Well, that made her freak out! I freed her hand and she eventually calmed down a bit (it took forever really), but she was still super on edge. Her nurse gave her some clonidine which helped her to doze off. She slept most of the afternoon and then woke again pretty fussy. There were a few times that she almost flipped out, so her nurse gave her Lortab which helped her to relax enough to fall back to sleep. Something is definitely hurting her today. She seems very agitated, like something is really bothering her. When she's awake, she scowling. It's definitely been a bad day. The only saving grace is that she's slept through a lot of it (and she had 4 pee diapers, so no worries there). Hoping and praying she can continue to sleep tonight and wake up feeling much improved in the morning. All of this is definitely making me think maybe we should just move on and start the ketogenic diet. This formula agrees with her (she did go 4 weeks without any nausea episodes), but only at 20kcal per oz and 55mls/hr (1100mls total). Just not enough calories for her! I guess we'll see how the next couple of days go, but I'll definitely be touching base this week with the ketogenic diet group.

Saturday, September 6, 2014

Very off but sweet

 Well, I think it was another night of ZERO sleep for my girl! She was sweet and happy, but no sleep. No pee either. She didn't go all morning until we tried another dose of clonidine at 10:30am. She dozed off and then FINALLY had a huge pee! Unfortunately, she only slept for an hour so we were able to change her, but she was awake (and no more pees the rest of the day). She was very "off" and startle-y all day! She was super sensitive and would startle very easily. Her body was tense (obviously) but she was very "still". She'd just sit there with her arms by her side or up in the air, but no hands in her mouth and not even much kicking. It was definitely odd. I took this picture of her tonight. I laid her down on the floor (because her temperature regulation is still so off and she's so sweaty) and she was laying there with her arms up above her head as if she were jumping up in the air. Such a cutie...but obviously exhausted and just not feeling well. She's had a gunky cough all day (but worse tonight). It sounds like it's just gunk in her throat and hopefully not in her chest/lungs. Tonight she fell asleep on my lap (without clonidine), she woke back up as Mike laid her in bed, but she quickly fell back to sleep! Hoping for a good night's sleep for my girl tonight. She so deserves it!

Friday, September 5, 2014

Sleepless and pee-less

Reagan didn't sleep a wink last night! Thankfully she wasn't fussy or whiny (an occasional laugh), so I was able to sleep for less than 5hrs before getting up to run! Today she's been laughy and vocal all day. Slightly kooky and her body is still very tense, but she's less on edge (if that makes any sense). She had speech, PT, and school today and did really well with everything. Less sensitive to external stimuli...so we didn't have to tippy toe around her as much. Her body tension, however, is wrecking havoc on her urine output. Not one single pee all day until tonight after her dose of clonidine (we think it relaxed her enough to finally go). It was a small one though, so we know she's still holding a lot of it in there. Her temperature regulation was also very off today, her body was super sweaty and hot but her hands and feet would get ice cold! Lots of outfit changes today. Tonight she did eventually fall asleep after her dose of clonidine (and she was OUT), but woke the second Mike tried to lay her in her bed! I had to move her back to her chair and it's looking like it's going to be another long night for her! I wish my girl could get some sleep!!!

Thursday, September 4, 2014

Kooky and on edge

Reagan had an awful night last night (for part of it anyway). She went down around 11pm but was back up around 1am. She was very moany groany and I didn't like the idea of her laying flat if she was going to be awake. I moved her to her chair and she proceeded to get very crazy! Thrashing, kicking, biting...looked very similar to an adverse reaction to medication...only I hadn't given her anything! It was awful. I tried oxycodone, but it didn't touch her. With all of the commotion, Mike finally came in and tried his hand at soothing her. She was just not budging. Eventually I decided to try some Ibuprofen and Mike took her into her room and laid down with her. Somehow, someway, he managed to get her back to sleep! Anyway, she slept the rest of the night and didn't wake up until 7am or so this morning. She's definitely been a lot more vocal and kooky today. Definitely on edge. We had to cancel both vision and PT this morning, but OT came this afternoon and did a lot of body work with her (stretching her upper body that's been in a state of constant "crunch")! She seemed to enjoy it! The rest of the afternoon/night she was just slightly on edge. We had to be careful about talking too much or music on tv. When it came to going to sleep, her body was just not cooperating. I tried clonidine, an hour later she was still wide awake! Then I tried Lortab, but that didn't do much either. She was tired and trying to doze off, but she just couldn't. Finally Mike tried laying down in bed with her and she immediately fell asleep, but the second he got up, she was wide awake again. She wasn't going to just lay in her bed awake (she started fussing), so I moved her to her chair. I'm afraid she's going to be up all night now! Poor girl. No signs of nausea today except for some tongue action she was giving me when I picked her up and was trying to hold her. Back on full strength feeds as of tonight.

Wednesday, September 3, 2014

Still nausous but slightly improved

Reagan slept some last night...but not much. Thankfully (I think), the nausea wasn't that bad overnight. I never heard her gag, but she did wake me up a few times moaning and I got up and shushed her to settle her back down. I think she was very restless and in and out of sleep a lot, but probably more awake than asleep. This morning she was bright eyed and sweet again. Draining yellow bile out of her g-tube, but not nearly as much fluid (volume-wise). Still nauseous. Gaggy/retchy but no throw ups to speak of. Despite the nausea, we were able to get her into the bathtub (with some peppermint oil in it) and finally get her a bath! She had to feel a little better after that (and she smelled divine)! She got a little sensitive during speech...she didn't tolerate her wheelchair more than 20min or so and was getting overly excited even when just being read to! The rest of the day we took it easy. She had "school" this afternoon and actually did surprisingly well with that. Tonight she was super precious and sweet but we saw a definite increase in nausea again. I thought for sure she would throw up at one point, but she never did. I drained more fluid out of her tummy and made the executive decision to switch her over to Pedialyte. Hopefully that will give her tummy a rest. Tonight she was fighting sleep a little, but Daddy laid down with her and she went down. Not sure if she'll stay there, but at least she's starting in her bed!!

Tuesday, September 2, 2014

Ugh nausea

Reagan slept OK, was a little restless last night, but at least she was in her bed. Today has been a nauseous day. She's been super sweet and bright eyed, just with crazy nausea. She's at 60ml/hr (1200ml total) right now on her formula rate increase and not doing well. We really hadn't seen but maybe the slightest hint of nausea since starting this formula almost 4 weeks ago, but today more than made up for it! She was gaggy, retchy all day and actually threw up 5 times. Not good. So frustrating! What's almost worse is to see her so otherwise happy and sweet and then having this mess up what probably should be good days for her! Poor thing. We canceled all therapies and just took it easy. Thankfully she slept off and on today (without any medication), so that gave her some relief. Tonight she was awake and still very nauseous so I drained her g-tube and got A LOT of fluid. (She shouldn't have that much fluid just sitting in her tummy!) It's looking like it's going to be a long night, but hopefully she can sleep some (in her chair). Praying it's better in the morning!

Monday, September 1, 2014

Sweet sleepy girl and major allergic reaction (for me)

Reagan slept like a rock last night (maybe it was the weighted blanket). I told her nurse to take the day off, because she was still not feeling well yesterday, so we've been nurseless today. I knew it wouldn't be an issue because I had both Mike and Grandma here to help out. So, this morning I went for my run and then came back and took a shower. I'm not sure what happened but first my feet started itching, then my thumbs and pointer fingers started swelling, I had hives all over...I was having a major allergic reaction! I never figured out what caused it, but two Benadryl did the trick (one wouldn't cut it...thankfully the swelling didn't spread to my airway! Of course the Benadryl also made me pretty drowsy, so I spent the morning laying beside Reagan upstairs. I must've rubbed off on her because she fell asleep and then slept the entire day! She finally woke back up around 5pm. She was sweet and overall pretty laid back, but she still wanted that hand in her mouth or in her hair at all times! Lots of loud, exaggerated sighs too (and biting at her lower lip)! She was awake til 9:30pm or so when she dozed off again on her own. Hoping she sleeps tonight despite sleeping most of the day!