Tuesday, December 31, 2013

Day 6

It's been another rotten day for my girl. She was up a lot last night, fussing and not happy at all. She's been constantly wiping at her nose, so we tried to restrain her arm...she did not like that at all! Needless to say, it was another loooong night! Today hasn't been much better. She's exhausted, but completely unable to sleep! She dozed off once (after a dose of clonidine) and we really thought (hoped) she was out and would sleep the rest of the day. She woke up an hour and a half later and she was not happy! That's the thing, when she dozes off, she's been waking up super agitated! I don't know if her fussing today is pain related or neurologic (perhaps upset at her inability to sleep)! I don't know. All I know is that we're all super frustrated for her! Why is it day 6 and she's still battling bad days?? It's just so unfair! Tonight we really thought she had turned a corner. Right around 9pm she settled down, stopped fussing, and even gave us some smiles. She was still very tense (very stiff and having lots of chorea) and still had clammy hands/feet, but she seemed more present. She was making eye contact...even smiling here and there. But after giving her clonidine (she was still wide awake after midnight), she started freaking out a bit. Mike tried laying down with her and she just escalated! Eventually she did settle down and fall asleep! Hopefully she stays that way! I was glad to see smiles tonight but I'll really breathe a sigh of relief once she gets some sleep! Praying for a better 2014 for my girl! (FYI-Ryan's tummy looks so much better today! Other than a random hive that popped up on his finger this morning, he's looking like he's almost done with this crazy allergic reaction!) 

Monday, December 30, 2013

So sick of bad days!

It's been another awful one for my girl! She didn't sleep much again last night. She dozed off around 11:30 and we immediately went to bed as well. She woke me around 5am making fussing noises. Thankfully she wasn't gagging (I left her g-tube drain on her all night and she was getting pedialyte so maybe that helped). I'm not sure if she ever dozed back off though. Today she hasn't had any throw ups, but this morning she was still retching here and there and she had a serious case of the protruding tongue. When I say her tongue was hanging out nonstop, I literally mean nonstop! And not just sticking out a little, it was usually protruding out so far that she looked like someone trying to impersonate Gene Simmons! So far out that it seemed she might actually choke on it! I've seen her do this at least once before, but it's definitely disturbing. She is SO tired, but for whatever cruel reason, her body is NOT letting her sleep! We did finally get her to doze off at one point (and we were all breathing a sigh of relief), but it only lasted 15min or so and she was back up and fussing to boot! She has been fussy off and on today, again I think it's just that she's so frustrated with her body! She's been rubbing at her nose again until it's a bright shade of red. She gets frustrated when we try to restrain her or prevent her from doing it, but I'm not sure how much more assault her nose can take! Even her left hand is all dry and crackly around her knuckles from putting it in and out of her mouth all day long! Poor thing, she just can't catch a break! This is day 5 of bad days and I tell you what, this is getting old! Only four good days and then five bad days?!?! That's ridiculous! Something has got to give! My girl cannot have more bad than good days! She just can't! It's SO unfair! Please say lots of prayers for her! That she turns this around ASAP! Preferably right this second! Ryan is also having ongoing issues. The bumps on his tummy/legs are fading and they are definitely less red today, but they're fading to a purple color and look almost like bruises (kinda like when Reagan gets mosquito bites). And then this afternoon he had a new bump pop up on his left heel and he would only walk on his toes (only on that foot)! It's like it hurt to walk on it! He seems better now, he's finally putting weight on it, but what the heck?!?! Can we catch a break already?!?! Very annoyed over here and praying for relief and resolution of these issues!

See the area just above his pant line...how it's a dark purplish color?!?! What the heck?!?! And he's got a spot on his leg that's doing the same thing!

Sunday, December 29, 2013

Nausea and hives oh my!

Everything is still about the same over here (unfortunately)! Reagan is super nauseous and Ryan is still covered in hives. Ryan slept well thanks to the Benadryl, but Reagan was up dealing with the nausea (even with us switching her over pedialyte). She woke me up around 5am with a cough, by the time I jumped from bed and ran in there, she was already soaked in throw up! I had to change her clothes and then I tried giving her clonidine. It didn't do a thing. Finally an hour or so later, I tried Lortab. It made her sleepy, but her body was fighting her. It would NOT let her go GI sleep. She'd close her eyes for a few seconds and then pop back awake. At one point she even started fussing! I think she was just so frustrated! Poor girl! This morning she seemed a little better. Less agitated and less nauseous. Unfortunately it didn't last. This afternoon the nausea came back with a vengeance and we've been battling it all night tonight. Big throw ups! Big! I try draining her g tube but nothing comes out, then she throws up and tons comes up! Ugh! So frustrating!! Poor girl! I really hope this fades and she's able to sleep tonight! Ryan has been a handful unto himself! He's covered in itchy red welts! This morning his hands/knuckles were red and swollen, which had us a little worried! We took him into an after hours clinic that had a pediatrician and both he and our regular pediatrician think its an allergic reaction to something. Could be the antibiotics he was on, could be something he ate...who knows. It just does NOT look good. Poor boy. He's so itchy too! Thankfully the Benadryl really seems to help with the itching and helps him sleep! Too bad we can't give Reagan Benadryl! We've really got to get on top of this nausea as well as finding something to help her sleep! I'm so frustrated for my girl! Please continue to keep both kiddos in your prayers!

Yesterday



Today

Saturday, December 28, 2013

Nauseous girl, itchy boy

Reagan woke up crying last night and was not consolable. We tried clonidine...nothing. She did eventually doze back off after a dose of Lortab, but that only lasted an hour or so. When she woke back up I had to move her to her chair. I tried the bean bag chair first but she just flailed around on it fussing the whole time. She seemed to prefer the more upright position of her special tomato chair. She didn't go back to sleep, but she did stop fussing. This morning she was OK, but still very much on edge, having lots of chorea, grinding her teeth, and not liking having her diaper changed. The nausea set in a little later. She had several throw ups in the morning/afternoon, each increasing a little in volume. They were also a little yellowish (usually they're just clear). I tried draining her g-tube but nothing came out except for a bit of air. As this was going on, her brother decided to give us quite a scare! He started developing a rash all over his body! Started in his diaper area, spread to his tummy, under his arms, on his feet and hands, on his knees! It was really bothering him too! He was itching all over and it seemed to be painful! It looked like hives but we can't be certain. We gave him some Benadryl and that seemed to calm him down a lot. He actually dozed off around 6pm...2hrs after he got the Benadryl. We put him in bed and he's been out ever since! (He usually goes to bed around 8-8:30...so that's very early for him!) Reagan's nausea has been relentless tonight. BIG throw ups! I don't even know where it's coming from, I drain her tummy and nothing comes out! We're desperately hoping the clonidine will knock her out so she can sleep it off! Otherwise it's going to be a really loooong night for all of us! Please keep both of our little ones in your prayers!! 

Friday, December 27, 2013

A little better

Reagan woke up several times last night fussing, but I was able to get her back to sleep with the help of medicine. She was still very irritable when she woke up this morning. She did not want to be messed with at all. She didn't want us near her at all (even just giving her medicines upset her) and she really hated diaper changes (thankfully she's back to having a normal amount of pee diapers today). Then around lunch time she dozed off and woke up feeling much better. She no longer seemed to mind us interacting with her but she still wasn't a fan of diaper changes! She was still very tense and having a lot of chorea but her hands and feet are not cold and clammy any more and she seems to be feeling a lot better. Hopefully by tomorrow she'll be even better! I'm hoping she skips the nausea this go round! Please continue to keep her in your prayers! 

Thursday, December 26, 2013

Ugh, bad days

The bad days are back and WAY too soon this time (only 4 good days since her last bad streak)! Reagan slept well last night but woke up this morning with a scowl on her face. She seemed to be having tummy pains that would come in waves all morning but as the day went on they became more constant. She's been holding her pee for days now (only having a couple of wet diapers a day), but after talking with her pediatrician, we're pretty sure it's a poo issue! She's backed up and that's causing her to hold her urine. So I helped her go but it didn't seem to give her much relief. We spoke to her doctor again and he suggested giving her pureed prunes through her tube. So we did that and we also gave her a liquid glycerin (pedialax) suppository. That really did the trick! She immediately relaxed and went and seemed to get major relief! Poor girl! That tummy is always giving her problems! She slept for a while after that but still woke up crying once more. It's been a rough day. Thankfully alternating the clonidine/Lortab seemed to calm her and help her sleep it off. I'm hoping this is just an isolated bad day and that she'll wake up tomorrow feeling much improved. Poor girl! Please say some extra prayers for her!

Wednesday, December 25, 2013

A Merry Christmas for my girl!

Reagan slept last night but she was still a little restless (like the night before)! She woke up and was talking a little early for my liking...maybe she was excited about Santa coming?!?! We did stockings shortly after waking up. I wish I would have taken pictures...Santa really goes all out with the stockings! Giant 3-4fts stockings  stuffed full with all kinds of gifts and candy! We waited til almost noon to do presents until my sister and her husband (and dogs) arrived. Lots of unwrapping! Reagan got a big foam bean bag chair (not as big as the one from before that was too big, but big enough for her to kick around on)! It's a cordaroy...a very neat concept. We found it online and then later saw it on shark tank! The inner bag can be removed and flattened out as a mattress! It's super comfy and we can even sit in it with her! She also got lots of things for her room, dolls, and clothes. Ryan got plenty of toys and clothes as well! Afterward we played games, took ugly Christmas sweater pics, and then went over to Mikes sister's house for dinner. Reagan stayed behind with grandma, she's been a little sensitive today, but Ryan enjoyed all of the noise and commotion with his cousins! By the time we got home, it was past Ryan's bedtime. We put him to sleep and then we had some snuggle time with our girl! She's been a little sensitive today and keeps getting a sweaty back and cold clammy feet/hands. Still struggling with urine retention and hasn't pooped in days. Not sure when she's gonna sort these things out! Praying for a good nights sleep tonight and so very thankful for a good Christmas for my girl!


Tuesday, December 24, 2013

Christmas Eve

Reagan slept well last night but woke around 5 or 6am and was not about to go to sleep! She was very vocal, but happy! Her brother woke up shortly thereafter and eventually everyone was up! Overall today was another good day. She was smiley and happy but slightly sensitive. A few times she was borderline tears and one time she went over the edge and actually started crying...she eventually settled down, but it took alittle  while. Her temperature regulation is off again (cold feet and sweaty back) and she's still clenching both her poos and pees! I'm not quite sure what's going on with her body but we're keeping a close eye! Tonight we had Christnas Eve dinner with my mom and sister and her husband. We're all seriously stuffed! Ryan was a bit of a terror, but Reagan was good. Hoping she has a good one tomorrow! Santa Claus is coming tonight!






Monday, December 23, 2013

More good days, more good days, more good days...

Sorry for the late post! Busy day! Reagan had another great day today! She woke up smiling and has been smiling ever since! She had one therapy today, speech, and had a really great session! Her therapist is working with her on eyegaze a little more in preparation of her trial of the Tobii eyegaze system in January! I've seen some amazing things with this system so I'm hoping this might be the thing to finally get her "talking"!! We're hoping she'll continue with these good days and give us an extra long good steak this go round! This most recent bad streak really showed us again just how fragile our girl is and that we can't take anything for granted! Just as we start to get comfortable with less bad days and more stability for our girl...POW! We're reminded that there's nothing stable about our life! We started her on neurontin a few days ago in hopes that it will help lessen her bad days. She's taken it before but at a much lower dose. Maybe it will work this go round! Please keep it in your prayers that these good days continue and that we finally get some relief for our girl!!

Sunday, December 22, 2013

So happy

Reagan slept like a rock last night and woke up this morning around 9am just as sweet and smiley as can be!! I can't begin to tell you how happy we are to have our girl back! She's bright eyed and just grinning from ear to ear! She had a great day today, dozed off here and there, but was awake and happy the rest of the day! We were surprised to see her awake...we figured she'd need to sleep a day (or two) to make up for her awful week! Guess not! She's a doll though and I'm beyond thankful that she's feeling so much better! Thank you for all of your prayers!


Saturday, December 21, 2013

All is calm

Reagan was up again most (if not all) of the night last night. This morning she still did not want to be messed with. She was very fussy! She was coughy/chokey...I think her throat was at its worst today! (I know what that feels like! Kinda like broken glass!) We were desperate to calm her but nothing was working (there were even talks of a visit to the ER if she didn't improve in the next day or so). She didn't want to be touched or even looked at! We tried clonidine, Lortab, ibuprofen...nothing was giving her much relief! Finally we tried Toradol (at palliative care's recommendation). I gave it to her at 11am and she finally dozed off in her chair at 12:50. That was almost two hours later, so I'm skeptical that it was the medicine, I think something just finally clicked and her body was able to rest! She's been out ever since! We transferred her to bed and she didn't move a muscle! Hopefully she can sleep long enough to let the antibiotics work! Please continue to keep our girl in your prayers! She needs some good restful days!

Friday, December 20, 2013

Strep throat and sleepless in Austin

Last night was not any better for Reagan and neither was today! SO frustrating! My girl was still very agitated this morning (of course she was...she hasn't slept since Monday)! Her throat seemed to be bothering her, and since I have had a sore throat for days, we decided to take her and her brother in to get checked out!  The pediatrician thinks they  both have strep! Ryan's throat looked awful and Reagans wasn't much better! Needless to say, everyone is on antibiotics now! Reagan is SO restless! She can't hold still for a second! She's misrable! We've tried everything...nothing is able to help her relax! We've had to restrain her arm to jerp her from rubbing her nose off! I can't even begin to tell you how upset I am for my girl! This is SO unfair! We need this antibiotic to work and work QUICK! Please say some extra prayers for our girl tonight! She so desperately needs rest! 

Thursday, December 19, 2013

So so SO sick of nausea!

It's so frustrating for us, just in the last month or so Reagan is experiencing a resurgence in her nausea! We thought the change in formula was attributing to the decrease in symptoms, but then just lately, without any change in her formula or medications, the nausea is back in full force! It's very discouraging! The bad days have also gotten worse (longer and more severe, less sleeping). SO frustrating! The palliative care team at dell is trying to organize a care conference for Reagan. Where all of her doctors will get together and try to problem solve for our girl! I'm hoping they will not only discuss how to treat her symptoms but also get to the root of the problem! What is causing this? How can we prevent it? That's our Christmas wish! We want to improve her quality of life! Why can't a family dealing with mito win the mega millions?? Can you imagine what that would do for the mito community? All of that money poured into mito?!?! We'd have a cure! OK, enough with my rant! On to my girl...she had another rough night last night! She was sleepy but not really falling asleep! The clonidine didn't do anything and then a dose of Lortab actually did the opposite...making her irate! The first fussing from her all day! Not good! She finally dozed off but probably not for long. She woke us back up around 3:30am with a throw up. She eventually dozed back off...but it was another rotten night for my girl! Her day wasn't much better! Lots of gagging/retching all morning. She did have a couple of periods where she was slightly improved and she even had visits from both vision and OT. Clonidine helped her to settle down a bit this afternoon, but tonight it's doing the opposite! What are we going to do with this girl?!?! She's definitely escalating tonight. She's getting more and more agitated (who can blame her)! Her poor little red nose can't take one more rub! The nausea has picked back up and she's grinding her teeth like crazy! I don't know if she's ever going to relax enough to sleep! There's not much more we can do to help her...except pray! (SO FRUSTRATING!!!) Please pray that she gets over this ASAP! She SO needs some rest! (Did I mention I was frustrated?!?! Ugh!!!)

Wednesday, December 18, 2013

Throw ups and ultrasound

Reagan did not sleep well last night. She woke up shortly after we laid her down, but went back to sleep with clonidine. She woke up again around 4am fussing, I tried to settle her down but she was just escalating! Kicking the side of her bed over and over...thankfully it's padded! Finally I had to pick her back up and put her in her chair. She fell back to sleep after some Lortab. This morning she and her brother were both up and at em before I woke up! Reagan was obviously a little nauseous and had a couple throw ups. We decided to attempt to finally get her in for that abdominal ultrasound. It was more sporadic nausea (not nearly as bad as it can get), but it was enough to warrant the ultrasound. We were able to get an appt so we rushed in at 10am. Reagan did really well with it, you could tell she was uncomfortable laying down, but she powered through it and never actually got sick during the procedure. She threw up a couple more times after we got home and never did well with laying down (diaper changes). Tonight she's back in her chair again. I'm going to switch her over to pedialyte tonight just to give her tummy a rest! Hopefully she'll be better by morning!  Please keep her in your prayers! 

Tuesday, December 17, 2013

Not so great morning, much better afternoon

Reagan actually slept fairly well last night (in her chair). She dozed off on her own but woke up around 2am fussing. She fell back to sleep with the help of clonidine and slept the rest of the night. She didn't wake up happy, but she wasn't crying either. All morning she didn't really want to be messed with. She was still very stressed, having lots of chorea, and easily agitated (even crying and holding her breath til she turned purple a few times...totally scaring her nurse). By this afternoon, she was much improved. She didn't mind being picked up and didn't even get annoyed by her loud brother! She was still very tense and would have periods where she'd get wide eyed and zone out, but eventually she dozed off without medication. She's in her bed now...praying she gets a good night's sleep and wakes up feeling much better tomorrow! 

Monday, December 16, 2013

Bad day

Reagan was a little restless again last night. Her pump went off around 2am. I didn't hear it until Mike went in and was having trouble with it. The tubing (inside the back pack) was kinked, thankfully all of the beeping didn't wake her up. A few hours later, she kept moving around and fussing but never opened her eyes. I knew right then and there we were going to be in trouble today! She woke up around 9am and she was NOT happy. A lot of moaning/fussing/crying. We were able to get her to settle down with a dose of Lortab. We actually had to stagger Lortab and clonidine all day and that helped to relieve some of her pain (sometimes it doesn't do a thing, but today it seemed to help). When it started wearing off, she'd wake up crying. Tonight I noticed she would gasp as if she were having sudden bursts of sharp pain! She didn't really have any awake time today where she didn't seem miserable! Poor girl! It's only been a week since her last bad cycle! This was way too soon! Praying she last a longer stretch of good days next go round and ends up having a merry Christmas! Please keep her in your prayers that she gets over this quickly!! These days are so rough on her! :(

Sunday, December 15, 2013

A bit off

Reagan did OK last night. No nausea that we know of, but I'm not sure how much she slept either. She's definitely getting back into that phase of restlessness. Her body is a lot more tense too. She was still very sweet and smiley today, but you can tell she's a bit  "off". Temperature regulation is way off (hands are like icicles and her back keeps sweating wet), she's  holding her urine (only having a couple diapers throughout the entire day), grinding her teeth, very sensitive, and the chorea has picked up as well (lots of kicking and hands in her mouth nonstop). But she's still just as cute and sweet as ever!! I'm hoping and praying she'll settle down and get some good sleep tonight! Thank you for keeping her in your prayers!

Saturday, December 14, 2013

A little nauseous

Reagan did not sleep well last night! She was restless, awake and kicking around a lot, I'm not sure how much (if any) actual sleep she got! She was good though, and she just laid in her bed until I was ready to get up with her this morning. I was very relieved to see her sweet and smiley again today! She had a pretty good day other than being a little sensitive to talking and some nausea that set in this afternoon. She had two throw ups while the nurse was here and then just a couple of false alarms tonight. We were afraid to lay her in her bed tonight so we put her in her chair to keep her more upright. Hopefully she'll sleep this nausea off and not have another Sunday like the last! Please keep her in your prayers!

Friday, December 13, 2013

Still good

Reagan had another good day today! She slept well but did wake up early this morning making noises, but she eventually went back to sleep! She woke up smiling and has been a good girl again today! Took a little nap this morning, but otherwise was awake all day. Still a little tense/excitable at times...especially with us talking or music on tv...but she held it together. Her hands and feet are nice and toasty...so that's good. Not sure what our weekend is going to look like! She's definitely keeping us on our toes! We have a new nurse working tomorrow...so I sure hope Reagan behaves herself!! 

Thursday, December 12, 2013

Santa at last

Reagan woke up this morning smiley, so we knew we were on for Santa! She was a little crunchy (with hands in the hair a lot), but she wasn't having much chorea so that's good. She had an early session of PT, which was perhaps one of her best PT sessions yet (with this therapist anyway). She had great head control and was making great eye contact, but she was getting a little vocal at times (especially when we were talking). After therapy we got her and her brother into their "Santa clothes" and then loaded up and headed to the mall! When we got there, there were 5 families in line, so we just got in line to wait. Reagan immediately started getting vocal and kooky and I knew we were in trouble! We put her noise cancelling headphones on and I went to the front and spoke to them about us bypassing the line. They were very nice about it and they got us in right away...talking to Santa and giving him a heads up of the situation. Everyone was great...Santa held her for a bit while we got her brother out (I wasn't sure if he was going to have a major meltdown about going to Santa...he is very clingy with mommy and usually won't go to anyone)! The second I put him on Santa's lap, he melted into him and wouldn't lift his head off his shoulder! He wanted to sleep on Santa! Reagan was a little over excited and Ryan was just the opposite...Santa had his hands full! It definitely wasn't my favorite Santa picture...and we may give it another try next week in their other red "Santa outfits"...but they didn't turn out terrible. Reagan had a good rest of her day. She got a little overexcited/agitated at times (and even shed a few tears tonight) but each time she snapped out of it and I really think some tummy pains were causing the discomfort! Tonight she insisted on being held and even though I got nothing done, I enjoyed more snuggle time with my girl! Hoping she'll sleep it off tonight and wake up and give us another good day tomorrow!!





This is more of what we were dealing with! (Of course we forgot to put Reagan's shoes on and I left Ryan's shoes that matched at home, so he had to wear some that were in my car!)

Wednesday, December 11, 2013

Super sleepy

Reagan had a super sleepy day today (so no Santa again)!! We kept thinking maybe she would wake up...she'd move around and stretch...but she never opened her eyes even once! We changed her diaper...nothing! And then right around 4pm, she woke up smiling! Just in time for school! She did a great job with that and then she was good all night! She was a little goofy and a little vocal at times, but I just gave her lots of attention and snuggles and she seemed to enjoy it! She eventually dozed off in my arms and was OUT! Such a sweet girl! Hoping she has more good awake time tomorrow so we can finally get over to see Santa!!

Tuesday, December 10, 2013

Great day, sweetest girl

Reagan had a GREAT day today! She slept in and then woke up on her own around 11am. She has been SO darling. Very sweet and smiley. Still a little coughy at times but I still think her throat is recovering from all of those bad days! Her hands and feet are still a wee bit cold, but not so much clammy, and her back gets a little sweaty at times but not crazy wet. Other than that, she's been 100%! She had vision therapy and OT today and both went really well. Tonight (after brother went to bed), I got some nice cuddle time with her and we worked on the Christmas tree a bit (just a bit because I couldn't find any of the hooks/hangers)! Holding her tonight, she was so wide eyed and smiley...I wish she could feel this good every day! Definitely thinking Santa tomorrow if she wakes up feeling this good!

Monday, December 9, 2013

SO much better

I'm so sorry for leaving everyone hanging today! I know this is a super late post! Reagan woke up this morning feeling better (she slept in her chair again). At first we weren't 100% certain that the nausea was gone because she was still a little spitty and coughy here and there, but I think it was just that her throat hurt from all of the crying and throwing up! Poor thing! She did finally give us some laughs, so we knew we were in the clear! As the day went on, she got more and more smiley! She was very laid back (quite the opposite from the last several days) and calm. We finally gave her a bath, it had been nearly a week (but when she's miserable like that, there's no opportunity of doing a bath), but after getting all cleaned up she proceeded to have FIVE (that's right FIVE) dirty diapers! It may be a new record! The first we actually had to help her a little, but the other four came on their own and more and more liquidy! I think it's all from the pedialyte, but who knows! She definitely needed a cleaning out, so I'm glad she got that all out of her system (that could have been part of what was making her so nauseous)! Anywho...SO glad to have our girl back! She was sweet and bright eyed and cuddly tonight and we just snuggled and snuggled! She was a little hesitant to go to sleep...still very laughy (so I gave her a dose of clonidine). That did NOT do the trick and if anything, it made her a little more goofy! I gave her a dose of Lortab and eventually she did drift off to sleep in hew own bed! Sweet dreams my sweet girl!

Sunday, December 8, 2013

Horrible relentless nausea

It's been another really awful day for my girl! REALLY awful! She did not sleep much last night. We were up with her off and on all night! She slept very little and the nausea just got worse as the night and the day went on. The gagging and retching turned into full on throwing up...big throw ups and lots of them! It was painful to watch! We all felt helpless. We switched her over to pedialyte, which didn't help the nausea but maybe helped replenish some of what had been coming up. She needed to sleep! Tried clonidine, tried Lortab...nothing would help her sleep! She was exhausted! Her nose was rubbed raw (way redder than yesterday)...Mike figured out a way to strap her arm down tonight so she couldn't rub at it any more! Finally around 10:30pm tonight and what felt like an eternity of nausea, she dozed off on her own! Prayers answered! Now I'm just praying she'll sleep all night and wake up a new girl tomorrow (with no sign of nausea)!!

Saturday, December 7, 2013

Nauseous again

I'm not sure exactly how much Reagan slept last night. She was exhausted but not falling asleep on her own. She did finally doze off (in her chair) after a dose of clonidine, and then we all dozed off! I never heard a peep from her all night but when I woke up this morning, she was wide awake and kicking around (just quiet). That pretty much sums up her day today...quiet but still agitated. Still very tense, lots of chorea, super cold hands/feet, and nauseous...but quiet. Thursday she cried all day, Friday she moaned/whined, and then today even though she was obviously still not feeling well, she was quiet. Poor girl. Tiny improvements each day (except for the addition of nausea today)...baby steps. Hopefully tomorrow will be much better. I'm just hoping she can sleep tonight despite the nausea. I tried giving her Lortab and Clonidine today in hopes of getting her to sleep it off but neither worked in the least! She's still wiping at her face a lot, so her poor little nose is all red again! Like rudolph! Speaking of, I'm still working on my Christmas decorations. With the recent drop in temperatures, I've stopped decorating outside but there's still lots to do inside. We have our tree up but it's still bare. Truthfully I'm afraid what Ryan is going to do to it once it's decorated! Without decorations, he's not paying much attention to it at all. But Reagan has a Christmas tree in her therapy room and he keeps trying to swipe ornaments off it, so it's definitely going to be an ongoing battle! We've got boxes of Christmas decorations sitting in our hall just waiting to be emptied...in my spare time! Hopefully we'll eventually get everything up! Please say some big prayers that my girl turns this around! She needs some sleep and the nausea needs to hit the road!

Friday, December 6, 2013

Another rotten one

Reagan did not sleep much last night, and the crying continued, so let's just say it was a miserable night for the two of us! She'd doze off for 30min to an hour only to wake back up crying once more! She did NOT want to be held, as she demonstrated by kicking, flailing, and biting when I would pick her up! It literally took all I had to just hang onto her! It's amazing the strength this little girl has! So needless to say, with that kind of night she did not wake up well rested and feeling better! It's been another rotten day for my girl! She's sleeping less than she did yesterday (unfortunately). The chorea is out of control (she can't stop moving for even a second), she's grinding her teeth, and she's been moaning and had this high pitched whine all day. Plus the occasional full blown cry...let me tell you, it's no party over here! Speech came by and actually got her to calm down a little by squeezing things she would put in front of her! OT came too and was able to soothe her enough with steady pressure to her tummy to get her to fall asleep! It didn't last long, but every bit of rest she can get is appreciated. She's definitely better today than yesterday, but not by much! Praying for sleep and a huge turnaround tomorrow! It really is unbearable to watch her suffer like this!

Thursday, December 5, 2013

Miserable

It's been an AWFUL day for my girl! Just awful! She slept OK, but woke up squirmy and tense. The crying didn't start immediately, I got up with her before 7, but it was clear she was "off". Right around 9:30am she started crying and then never stopped. She cried nearly every waking moment today. Those miserable, gut wrenching cries (turning purple from holding her breath)...nothing soothed her, nothing took the edge off. We tried Imitrex again (the migraine med), and this time we saw no response (even at double the last dose). We finally resorted to Lortab and that helped a little. She'd doze every now and then but an hour was about the longest stretch. It was a loooong day....and night. She actually got a little worse tonight. She was awake for a longer period of time and very upset. Grabbing and pulling at her hair, biting on her hands (and gnashing her teeth together), kicking and flailing nonstop! After fighting her for hours, I gave her a dose of clonidine and she FINALLY dozed off!! Praying she'll stay asleep and wake up much improved tomorrow!!

Wednesday, December 4, 2013

Busy girl

Today was another surprisingly good day for my girl! She woke up happy once again and we were all very relieved! She was relaxed too, at times to the point where we thought she was going to doze off, but she never did! I guess that's a good thing because she had a busy day of therapy...PT, Speech, & School...and she did really well with everything! We finally got her up in her stander again and she even did great with that (standing in it for over an hour)! It was a busy day, but a good day for my girl. I spent a lot of time in the yard, trying to put more lights out before the cold weather hits tomorrow! It's beginning to look a lot like Christmas! (I LOVE Christmas!!!) Tonight Reagan seemed a little more tense, she was doing the occasional tooth grinding and her body was very rigid. Hoping she can settle down and get some good rest tonight! Tomorrow (and even more so on Friday) it will FEEL at lot more like Christmas!!

Tuesday, December 3, 2013

Restless and sensitive

Reagan slept last night but she was restless. This morning she was really kicking around and squirming in her bed. I'm not sure how well she actually slept. She was doing A LOT of tooth grinding last night (I forgot to mention it in yesterday's post, but she's doing it again now so I just remembered)...it drives me crazy! It really is like nails on a chalkboard! She moves her lower jaw back and forth and grinds her front/side teeth together! Makes me crazy!! Overall today she's definitely been more tense. Still sweet and smiley but very sensitive to sounds and lights. Was not a fan of people talking around her, but OK when talking directly to her! She only had one therapy today, OT, but she did well. Still having issues with her temperature regulation and she's not only refusing to poop but very few pees as well! Tonight she was having little bouts of crazy...something is definitely off with my girl! Hoping she can continue to hold it together. Please keep her in your prayers!

Monday, December 2, 2013

Sweet but no Santa

Reagan had another good day today. She was still very crunchy with hands in her hair nonstop! She was also very sweaty...especially on her back (definitely some temperature regulation issues going on)! But she sure was super sweet and smiley! Grandma and I made a run to the outlet mall in San Marcos (with brother) to get a dresser/tables for our master bedroom...so unfortunately we did NOT have time to see Santa today! I don't think it was Reagan's best day for Santa anyway because of the crunching! We might have had a hard time getting her to sit up straight so we could see her beautiful face! And that's very important! She also wasn't a huge fan of people talking around her, so that probably wouldn't have been good in a crowded noisy mall! Hopefully we'll be able to find the PERFECT day to take her and get really good pics like last year's!! Praying for more good days for our girl!

Sunday, December 1, 2013

Crunchy spunky girl!

Reagan slept well again last night and woke up this morning super sweet and smiley again! She was a little more kicky today and very "crunchy" (bending at the waist and keeping her hands up in her hair/mouth)! A little more excitable today, but still super sweet. She also was having some issues sweating her back wet in her chair tonight...but other than that she's had a normal, good day. Still giving us those huge toothy smiles...can't get enough of those! Earlier as I was getting ready to type the blog and I had my laptop on my lap, the stuck her leg out and kicked my laptop screen closed and then flashed me this huge smile! You can't tell me that wasn't purposeful! This girl definitely has some spunk! She's been quite a spunky girl today! Love her! (If we can get another good day tomorrow, we're thinking of venturing out to see Santa! I guess we'll just play it by ear!)

Saturday, November 30, 2013

Sleepy but so sweet

Reagan slept well last night but woke up around 5:30am. She was quiet, only making the occasional sound, but she was SO precious! Mike got up and laid down with her to get her back to sleep and she was really turning on the cuteness! She finally dozed back off and then continued sleeping...and sleeping...and sleeping! She was still out cold at 2pm when I decided that we had to go in and at least change her diaper! Well, of course that woke her up! She woke happy though, so that's good. She did end up dozing back off for a bit...guess she just wasn't ready to wake up yet! Definitely a sleepy sort of day! She was super smiley and sweet when awake though, so Grandma was really excited to see her doing so well on her birthday (today was Grandma's birthday)! Tonight Grandma and I went shopping and to dinner while Daddy watched both kiddos! Everyone behaved themselves and then Reagan had plenty of Mommy snuggle time before bed! Such a darling girl!

Friday, November 29, 2013

Another good one

Reagan had another good day today. She slept well last night but was up and kicking around early this morning! She was still sweet and smiley but a little less laughy. Tonight she had her third poop in three days ON HER OWN! That's definitely a record! Her nose is a little red and peely, I think her wiping at it constantly is finally taking its toll! Poor nose! She had speech and OT today (not everyone is on vacation)! We're so blessed to have such a good pair of therapists working with her!! They both believe in her and are determined to find her a way to better communicate with us!! Now, if only we could find a good fit for PT! Please keep that in your prayers! So all in all, another good one for my girl! I hope they continue! Grandma comes in tomorrow for her birthday and she's wanting to see a happy girl!!

Thursday, November 28, 2013

Happy Thanksgiving

Late thanksgiving post! Each morning waking up and running into Reagan's room to see what kind of day my girl will be having...it's like Christmas morning (only half the time you get coal instead of presents)!! Thankfully this morning our girl woke up sweet! She actually had a good day today! She's been giggly, sweet, and smiley! Who would have guessed?!?! Definitely an answer to prayers!! (She did poop on her own for the second day in a row...so maybe that helped a little!) Lots of cooking today for our at home Thanksgiving feast for two (plus nurse)! Way more than we could eat, that's for sure! Reagan and I never got out of our pjs all day (one bonus to not going anywhere)! We had a good day, good food, and bonding time for our little family! Hope everyone else had a good one too!

Wednesday, November 27, 2013

Surprisingly good (and giggly)!

Reagan slept well last night but she was a little restless. When she woke up this morning, there were no smiles...but there were no tears either! She was still very tense, but she gave us some laughs and we all breathed a sigh of relief! She's had a giggly sort of day. Lots of chorea (even worse tonight), chewing on her hands and gagging herself with her fingers, but overall a pretty good day (all things considered)! I really thought we were in for it today. We honestly never know what it expect from this girl! That's just one of the reasons that makes it so difficult for us to make advance plans for anything (including holidays)! And to tell you the truth, even though she's been as good as gold today, there have been signs of the not so good (freaking out during her bath today and getting increasingly stressed tonight). We are definitely not out of the woods for Thanksgiving just yet. Thankfully it's just us (and a nurse) tomorrow, so we don't have to worry about time restraints or ruining anyone's Thanksgiving with a hysterical child (that could be Reagan or Ryan)!! Thank you for keeping us in your prayers and Happy Thanksgiving!!

Tuesday, November 26, 2013

Not so great

Reagan slept well last night but woke up this morning in a not so great mood! She was very agitated so we changed her diaper and got her into her chair ASAP! She was this close to crying, but she didn't. And she did NOT want to be messed with! She was awake for a couple of hours but eventually dozed back off and then slept most of the day (without medication)! She was awake tonight for a couple of hours and she was very stressed. Lots of chorea, cold/clammy hands and feet, and a wild eyed zoned out look! Not good. Not good. I have no idea what tomorrow holds, but for tonight I just pray that she can stay asleep and get some rest! Please keep our sweet girl in your prayers!! (Oh and to top it off...I ran into our nurse's car today as I pulled out of our garage! Ugh.)

Monday, November 25, 2013

Tobii a go!

Reagan woke up this morning very tense and wanting to cry! She had a lot of gas and a poop, so I think that helped to relieve some of the pain she was having! She was still on edge, but we managed to distract her and keep her calm until the Tobii eyegaze rep got here! Both Reagan's speech therapist and OT rearranged their schedules to be here and while it wasn't Reagan's best day for therapy, she still did well enough with it to warrant a trial! We think with a little customization and practice, this might be something that could work well for her! We'll see!! We should probably get it to trial mid Dec...in the meantime her therapists are going to work with her on making choices with her eyes (opposed to using her hands). The rest of the afternoon was pretty low key. Just trying to keep her from getting too excited/agitated. Tonight she was noticeably on edge...lots of chorea and finger chewing. I tried holding her, but she was not comfortable being held. She definitely preferred her chair and even fell asleep there! Sweet girl!








It doesn't get more beautiful than that!

Sunday, November 24, 2013

So precious!

Reagan has been a sweetie again today! She woke up a little early again, but nothing too terrible. She's been ridiculously sweet today! So precious and so wonderful. I was holding her tonight and she honestly couldn't have been more sweet or precious! I kept thinking that I wanted to take a picture of her just grinning ear to ear at me, but I know that the camera couldn't have even attempted to show just how darling she really was! Still a little kooky vocal at times (like when she's annoyed with us talking or when her brother or the tv is too loud)! Hands and feet are still cold off and on, but her back wasn't sweating wet today so that's good! I'm hoping and praying she'll hold on and continue having good days! More importantly, I'm praying that she has a good day tomorrow (Monday)! An awesome day, really! Because she's got a communication evaluation with the Tobii rep tomorrow at 1:30! We need her to be "on"!! Please keep her in your prayers, we really need to find a way for her to communicate with us!!

Saturday, November 23, 2013

Sweetie

Reagan had a good day today. She's been sweet and smiley, but still a little excitable! We just took it easy today and tried to keep warm! Very cold and rainy here! Reagan's hands and feet have been a little cold (but hey it's cold outside) but she's been super sweaty on her back, so obviously some temperature regulation issues going on right now, but otherwise she's been good. I've been getting my fair share of snuggles the last couple of nights before bedtime, so that's nice! Tonight we watched Elf! (FYI...I LOVE Christmas!!) Reagan's not really dozing off on her own at all lately, but with the help of clonidine we are eventually getting her to bed...now if only we could get her to sleep in (she's been waking up between 4-5am each morning)!

Friday, November 22, 2013

Getting there

Reagan fell asleep last night thanks to clonidine! She slept well, that is, until she woke up at 4am!! She was very vocal and not really wanting to go back to sleep! Daddy picked her up and put her in her chair around 6:30, when she was starting to get a little agitated! She's had a pretty good day today! She's definitely still easily excitable (and vocal) so we've had to be careful with her, but she did well with all of her therapies and even trecked through the cold to go get some bloodwork and hip X-rays. The bloodwork was just her routine EPI-743 labs, although we are doing them a little early. I just wanted her checked out after that horrible bad day she had earlier this week! The genetics dr also added on a couple of tests and I asked her GI doc to add on a few vitamin levels to check! Reagan did great for the blood draw, despite the fact that the lady blew her first vein and then had to go to the other arm for more (I'm still doubtful she got enough blood for everything...)! Then we went downstairs to X-ray, we had orders from her PM&R doctor to get an X-ray of her hips (just to make sure everything still looks OK...it's been several years since her last one). Once we actually got back there it only took 5min from start to finish, but beforehand we had to sit in a loud, crowded waiting room for over an hour with an over sensitive child! Not fun! Then as we were leaving, a noisy car in the parking garage almost brought her to tears! Poor girl! Things still aren't back to baseline, but hopefully she'll continue to get there. I certainly wish her sleeping through the night would return, for everybody's sake!! She was definitely fighting it again tonight!

Thursday, November 21, 2013

Kooky day

Reagan slept well last night but woke early at 5am and would not go back to sleep. Daddy tried his best, but she was getting increasingly agitated and it was clear that she was not going to just lay in bed! So around 5:45am this morning I reluctantly got up with her. We did get some good snuggle time in, but she was definitely a little kooky! She's actually been a little kooky all day today. Very sensitive, easily wound up, tense body, not wanting to sit in her chair (preferring to be held)...and VERY vocal! There were many times throughout the day where it seemed that she might escalate (and even once when we decided to give her Lortab), but thankfully she managed to hold it together. I definitely think she was having some tummy pains today. That slow motility is still giving her some issues! Poor thing. Hopefully she'll get back to baseline soon! She did take a little nap this morning, of course, she was tired! Praying for a good night's sleep tonight and a more mellow day tomorrow!

Wednesday, November 20, 2013

What a difference a day makes!

Reagan slept like a rock last night, that is until 5:45am when she woke up super spunky and vocal (and SMILING)!! I got up and changed her diaper and then tucked her back in bed and she fell back to sleep. She slept until 9:30 or so and woke up a sweet, smiley girl! What a difference a day makes! Seriously, like night and day! I was SO relieved to see her feeling better! She's definitely still having some motility issues. Her GI system has really taken a big hit this bad streak! Things just aren't moving! She's even having substantially less wet diapers! It had been days since her last dirty diaper and today she finally went, but reluctantly (even with help). Not sure what we can do to help her in this department! I think we just have to wait for things to get moving again! Overall she had a pretty good day today! She's been happy but she was a little sensitive and got overexcited a couple of times during therapy. Tonight she was very much awake and she didn't doze off until late! Hoping she can get some more rest and wake up well rested and recovered tomorrow! Thank you for keeping her in your prayers!

Tuesday, November 19, 2013

Sleep at long last

Last night (and all day yesterday) Reagan was struggling...kicking and flailing and wiping at her face until it was raw! There didn't appear to be any chance she was going to settle down and go to sleep. I decided to pick her up and change her diaper and (sweaty) clothes and then I held her and sang "Santa Claus is Coming to Town" to her as we watched the end of Elf! Well, I don't know if it was her change of clothes, the fact that I was holding her, or my singing, but she fell asleep in my arms and was OUT! Mike was able to transfer her to her bed and she never moved a muscle! She looked so peaceful sleeping at last (on her own without any medication). Unfortunately it was all short lived. She woke up fussing maybe an hour or so later, right after we climbed into bed! Mike got up with her but she just fought him and fussed and flailed nonstop (with super human strength). I got up and gave her a dose of clonidine and she did eventually fall back to sleep, but again that was shortlived. She woke up again and was squirming in her bed and kinked her tube making her pump go off. I got up and fixed her pump, changed her diaper and transferred her over to her chair (because she was making gaggy faces). I gave her some Lortab but I'm not positive whether or not she ever went back to sleep! This morning when I finally dragged myself out of bed, she was wide awake and kicking in her chair. No crying, but her eyes were all gunky and purple from all of the crying yesterday. She has a bit if a Zombie look to her. I don't blame her, I feel a bit zombie-ish and I got a lot more sleep last night than she did! Poor girl. She was still very nauseous again this morning but that faded as the day went on. This morning when she woke up she had blood crusted in her right nostril. I'm wondering if that was from the Imitrex (in nasal spray form). I gave it to her in her left nostril yesterday and then this morning her right nostil was crusty with blood and then later this morning it started bleeding again! Very strange!! I don't even remember the last time she had a bloody nose (if ever)! The Imitrex is the only thing I can think of that would cause that, but Mike mentioned the fact that she was so crazy last night she might have whacked herself in the nose (she popped him in the face a few times so that's possible)! She's one strong girl! This afternoon she was still very tense and struggling, wiping at her face/nose nonstop, so I gave her a dose of Lortab. Finally around 2:30pm she dozed off in her chair and she's been sleeping ever since! Thank God! This girl really needed some sleep! It's 11:30pm and she's still out! I'm not sure if we should even attempt to move her. We'll see. I'm just praying she'll stay asleep and get the much needed rest her body so desperately needs!! Thank you for keeping her in your prayers!

Monday, November 18, 2013

Horrible, terrible, worst day in a very long time!

People have asked me about how Reagan has been sleeping lately, and even though she's still been having her same cyclical bad days, she hasn't had any of the up all night, crying nonstop every waking moments nights since we moved to Austin...that is, not until last night! My girl has been miserable for the last 24hrs. MISERABLE! She slept one period last night from about 3-5am (after a dose of Lortab) and then again from 5:20-6:20am (with a dose of clonidine)...but that was it for sleep last night...3hrs (for her and me)! And when I say she didn't sleep, I mean she was kicking and screaming and gagging and flailing nonstop! It was brutal! And this has pretty much continued all day long today. This morning I was desperate to help her, so I gave her a dose of Imitrex (a migraine med her GI dr prescribed). She did doze off 40min later or so and slept for about 2hrs. I "think" it helped her, I wonder if it might have worked better had I given it to her last night, at the first sign of bad days (but I didn't want to give her a new medication in the middle if the night). Like everything though, it did wear off and then she was back to kicking and screaming again! She's SO hoarse right now, poor thing. She's been crying A LOT! Last night and this morning she was still pretty nauseous (no throw ups, just retching), but it has improved a little throughout the day. Unfortunately, that's about the only improvement. She's still super miserable. Rubbing/wiping at her face/nose nonstop! Squealing in this pitiful high pitched, miserable voice. I have NO idea if she's going to sleep at all tonight, and I'm not sure I can make it another night with such a high stress level and only 3hrs sleep! I'm not sure what has caused her to plummet into such a horrible bad day so quickly (not even a week since her last bad day)?!?! I HATE this! I HATE to see my girl in such pain, and completely unable to give her relief of any kind! Praying she gets over this very soon and gets some sleep tonight! Please keep her in your prayers!

Sunday, November 17, 2013

No sleep & pain

Reagan did NOT sleep well last night! In fact, I'm not even sure if she slept at all! She was tired but she was restless...even though she was having long blinks, we never really witnessed her asleep! Today was a very similar day yesterday. No smiles, lots of tension, plenty of chorea, major temperature control issues (excessive sweating but ice cold hands/feet)...then add in a couple crying outbursts and nausea tonight...I have NO idea what's going on with my girl. She used to have way too many bad days, but everything was so predictable we knew when it was going to come and when it was going to go! Now, we have no idea what's going on! I certainly wouldn't think she would be due for a bad day right now, but tonight she sure was miserable and seemed to be in serious pain! We tried Clonidine, Lortab, & the Lidocaine pain patch (on her forehead, calves, and back of her neck)...nothing seemed to help!! She did finally doze off in my lap, but she woke up as soon as Mike tried to move her! He tried her in her bed, then in her chair, and then I even tried to help her poop (but she was way too tense for that to work)...she finally dozed off on her side on the floor! I'm praying she'll stay asleep and wake up feeling loads better tomorrow!! Poor sweet girl!

Saturday, November 16, 2013

Still off

Reagan slept well last night, but was wide awake and squirming down her bed when I woke up at 7:20! She's been in a decent mood today, but still not smiley yet. A few occasional laughs, especially when hanging out with Grandma! This afternoon she decided she was NOT a fan of Mommy! I was talking to her and out of no where she went into full blown tears! I tried picking her up, but she wanted nothing to do with me! She did finally calm down for Daddy, so I just kept my distance the rest of the night. She's definitely still "off"...chorea is still hanging around, cold/clammy hands and feet, & flushed pink cheeks! Come on good days, where are you?!?!



Busy

Reagan slept well last night, but she was up and rolling around in her bed by 7am! I got up with her and was surprised when her brother decided to sleep in (apparently he was up and at em super early so he must have wore himself out)! I started to get a little worried when he was still out cold at 9, so I broke one of my rules and went in and checked on him/woke him up! Thankfully he woke up in a decent mood (you never know with him)! Reagan has been a sweet girl today. Not super smiley, but content, with the occasional laugh. Busy day of therapy. PT this morning, then speech, then OT, followed by "school"! Busy, busy! Should be a good weekend for my girl!

Thursday, November 14, 2013

Better

Reagan slept well last night and woke up this morning calm and content. No smiles, but she's been sweet. And a little yawny. Still having little bouts of chorea/extension, but getting better! This morning she had vision therapy (with her new vision therapist, who was apparently out on leave for several months) and she did really well with it. Then she had an appt with the nutritionist for the ketogenic diet. This was really just to get this visit out of the way, because as of right now we have no intention on starting the diet anytime soon (because Reagan has been relatively stable lately), but we want to have it as an option, should things change. Then this afternoon when we got home we had just enough time for a bath and then she had OT! She was a rock star during OT, bearing weight through her arms, then swinging and following directions and playing with a guitar app! She had a good day! Tonight she was snuggly and sweet and spent some cuddle time on mommy's lap! So glad to see her feeling better! Looking forward to a good weekend for my girl! (I wanted to post a picture because she was so super cutie today, but she was moving and everything was a blur!!)

Wednesday, November 13, 2013

Communication

Reagan slept well last night and woke up this morning feeling a little better. She's still very tense, extending a lot and having lots of chorea, and is still very sensitive (the sun shined in her face and you would have thought she was being electrocuted)...but overall she's definitely improved. She has been fine with us interacting with her and she even tolerated PT and then a joint session with speech/OT! It's been another quick turnaround and for that we are very grateful! We are in talks with her speech therapist and OT about finding a communication device that might work for her. They both think she understands a lot more than she is able to communicate to us. After reading a wonderful blog post by Lily's mom (go read it, you will be glad you did), I contacted a rep for the Tobii eye gaze system and she's going to bring a loaner device for Reagan to trial! It's a big step, but I'm hoping it will lead us in the direction of finding a way for our girl to communicate with us! Very exciting! The rest of our day was pretty low key. Just staying inside, trying to keep warm! Tonight my girl dozed off in her chair and was OUT! I moved her to change her diaper and she never budged! Mike put her in bed, she was still out! Sweet dreams, sweet girl!

Tuesday, November 12, 2013

Bad day, but could've been worse!

Reagan slept the whole night through last night in her chair and she was still asleep this morning when we all got up! We tippy toed around her, but she did eventually wake up around 9:30am. When she woke, she was still noticeably agitated. She didn't cry, but she did fuss when we came near her (just to give her medications or try to pull her hair out of her face). When we picked her up to change her diaper, she was even more upset. She cried for a bit, but eventually settled back down. I decided to try the lidocaine 5% patch her PM&R doctor prescribed her. I really had no idea where to place it. Something is obviously bothering her on days like this, but we still really have no idea what! I've heard many mito patients talk about leg pain (and she does kick around a lot on bad days), so I cut two big portions of it to put on her upper thighs. Then I put the remaining strip on the back on her neck (for head/neck pain). She did doze off about 15-30min after applying the patch, so maybe it did help. Who knows. The piece on the back of her neck didn't want to stick (because of her hair), so we had to add some extra tape just to keep it on. I do think her head hurts (I'm not sure whether or not it's an actual migraine), but just trying to pull her hair back, she freaks out!! She's been dozing off and throughout the day. When she was awake, she was still very agitated and does NOT want to be messed with. She was supposed to have a GI follow up today, but I called them and they agreed that it would be more stress on her than it's worth, so the doctor is supposed to call me tomorrow. Tonight she was already showing some improvement. She didn't seem to mind us being near her and she even tolerated her brother's squeals and craziness! She even dozed off on her own! Praying she sleeps well and wakes up feeling much better tomorrow!

Monday, November 11, 2013

Very tense (and spitty)

Reagan did not sleep well again last night. She was very restless, laughing off and on...not a lot of sleeping going on! This morning, she was content, but sensitive. Easily startled and tense (which has gotten worse as the day has gone on). She's also been super spitty today, she's soaked a couple shirts and bibs! Lots of chorea too. Tonight she's been very zoned out, kicking nonstop, wiping at her face over and over again (it's hard to tell if she's rubbing her eyes, nose, or head). She'll startle and extend so much she looks like she's going to get up out of her chair! Totally and completely miserable. Like a bad day, but without the crying. Tonight it took both Clonidine and Lortab to get her to sleep, but she's still very restless. We're going to leave her in her chair tonight (because of the nausea and restlessness). Hopefully she'll get some sleep! No idea what to expect tomorrow! We're supposed to have a GI follow up appt in the afternoon, but not sure if we'll make it just yet! We'll just have to wait and see how she is when the time comes! Please keep our girl on your prayers!

Sunday, November 10, 2013

Happy, happy, happy

Reagan was restless again last night. She got crazier after the Clonidine and then settled down after the Lortab. She slept but woke up laughing and then just kept laughing all day long. While we do like laughs, and she does appear to be happy, there is a strong hint of crazy to these laughs so you just have to be careful with her when she's like this! She was good all day, had two good dirty diapers (both of which I had to help her go), and spent another relaxing day downstairs on the couch (still waiting for the paint smell to go away). Daddy hung her swing today! Yeah!! I didn't know if it was going to happen! There is a tiny crawl space in our attic up among the AC ducts. It's really way too small for Mike to be crawling up there (and he really had no desire to go up there), but I told him the only thing I wanted for my anniversary (tomorrow) and my birthday (Thursday) was for him to hang Reagan's swing!! So he risked life and limb today (or at the very least he risked falling through the ceiling) to get Reagan's swing up and running, which is going to make Reagan, Ryan, and me very happy!! Unfortunately, tonight Reagan did escalate. She went from laughing, to quiet with an agitated look on her face, to crying! I managed to calm her down, but this is not good. Her hands and feet have been ice cold and clammy and with her sleeping pattern being off and the laughing today, well, we know where this is most likely headed. I sure wish I would have already filled the medications the new doctor prescribed last week! Please keep her in your prayers! Maybe she can hold out at least one more day so that we can have a good anniversary tomorrow! Lucky number 13!

Saturday, November 9, 2013

Lazy painting day

Reagan was a bit restless last night. She's been sleeping so well lately, but last night she just didn't want to go to sleep. After a dose of Clonidine, she did doze off but it was a restless sleep and an hour or so later, she was back awake. Around 3am, she started getting more fussy, so I gave her a dose of Lortab. That finally helped her to go back to sleep. She was up an at em right after 8am this morning and she was a happy smiley girl again! We had some painters come and paint Reagan's room, the therapy room, and our master bedroom today. Mike wasn't thrilled about it (he thought the other paint color looked just fine), but I was ready to neutralize a little and get rid of some of the brown (I mean, it IS on every wall/ceiling in this house)! So it turned out to be a sort of birthday/anniversary present for me, since I would have been the one having to do all the labor! So with all the work going on today, we were banished from upstairs. We had all the windows open, but it definitely still smells. We're back up there tonight though, so hopefully we don't get high on the zero VOC/low odor fumes! Reagan had another good day. She had her moments (where her brothers jib jabbering was starting to annoy her or she was not happy with us talking), but overall she had a very calm, lazy day! She also seemed less congested, so that's good. Tonight she was resisting sleep again and it took Clonidine and Lortab to get her down. Hoping for another good one tomorrow!

Friday, November 8, 2013

New doctor, new ideas

Reagan slept well again last night and woke up sweet and smiley! She had an early session of PT and then we loaded up and headed in for her PM&R appt. Let me just say that I REALLY like this doctor! She was personable, took a ton of time with us, had obviously already reviewed all of her records, and had lots of great suggestions! She told us about a pain patch we can try with her. It's topical, not systemic, so we don't have to witty about it interacting with her other meds and it may work better since it doesn't have to go through her GI system to be absorbed. The only issue is...where to put it ! On her bad days we know she's in pain, we just don't know where! There will definitely be some trial and error with this! She also recommended trying nerontin again. She said Reagan was on a very low dose before and she thinks maybe she just needs a higher dose on her bad days. Maybe? We'll see. I liked her approach! She looked at the big picture, not just PM&R stuff! After the appt, we came back to the speech therapist waiting for us. Reagan had been great all day, but she was not loving speech today. She started vocalizing and then escalated to almost the point of tears! We had to take her out of her wheelchair and just hold her. She eventually settled down and she did fine with OT a couple hours later! The rest of the dry went smoothly, but she's still very congested and having a lot of sinus drainage! Definitely ready for this sinus stuff to pass! Hoping for a good weekend for my girl!

Thursday, November 7, 2013

All is well

Sorry for the late post...again! When I stay up til 12:30am, my brain doesn't allow me to write a coherent blog post!! Anyway, all is well with Miss Reagan! She had another good day today! Slept well, woke up smiling and sweet, she's a doll! She still has a super runny nose, but she's a trooper! I'm just hoping it's just allergies since we're all pretty congested! Only one therapy today, but she did well with it. Tonight she snuggled with mommy until she fell asleep! Love our cuddle time!

Wednesday, November 6, 2013

Dental appt and snuggles

Reagan slept well again last night, not waking up until we went in to change her diaper at 10am! We encouraged her to wake up because she had PT and a representative from the school system coming at 10:30am. She woke happy though and was a super sweet and smiley girl! She did well with therapy (despite just waking up) and then speech came shortly thereafter. She did well for that too! She's really been a super star lately when it comes to therapy! Then we had to take her in to Dell Children's for her dental appt. We dropped brother off with Grandpa (so much easier to not have him yelling in my ear when I'm trying to talk to doctors) and drove in for the 3pm appt. We were early, but they were not. We waited a while in a crowded office and then were finally taken back. They didn't have any of her records from Houston so we had to go through all of her medical/dental history, but I was pleasantly surprised with the dentist. She was very sweet (nice to finally see a dentist with some personality...her dentist in Houston had the personality of a mortician) and she was very pleased with Reagan's teeth. She did say that if she undergoes another procedure with anesthesia in the future (MRI, endoscopy, etc...) she would like to do a through cleaning and x-rays at the same time...but for now everything looked good. She put some fluoride on her teeth (which they never did at TX Children's) and we were on our way! She fell asleep in the car on the way home (we were stuck in lots of traffic) but woke as soon as we got back! She was a sweetie the rest of the night, snuggling with mommy...I love this girl! We've all been a little sneezy, runny, coughy lately. Not sure if it's just allergies or something else, but it sure hasn't dampened my sweet girl's spirit! So thankful for these sweet snuggly days!

Tuesday, November 5, 2013

Sleeping Cutie

Reagan slept well last night and then this morning...she just kept sleeping!!! She slept and slept and slept! We even went in and changed her diaper at 10:45am (which usually wakes her every time), but no, she stretched a little and then kept sleeping! She didn't wake up until 3:30pm, and that may have only been because her nurse was giving her medicine! She woke up happy though and just in time for OT! Her therapist did a lot of floor work with her (since she had been in bed all day), and she did really well with it. Tonight she was a little excitable. A little amped up and kooky (maybe because she had been saving up her energy all day)! There were a couple of times that it seemed she might escalate into craziness, but she held it together and eventually fell asleep on my lap (without medication)! I took her to bed and she's still asleep! Hopefully she has a good night's sleep, despite sleeping most of the day..it usually (thankfully) doesn't affect her night's sleep!

Monday, November 4, 2013

Sweet kooky girl

Reagan slept well again last night and woke up a sweet girl this morning. We decided to get her into costume today since she never got to put it on for Halloween! She was a good sport (better than her brother) and she looked super cute as a skeleton! She had speech at noon (private) and then speech through the school system and her teacher came 4:30pm. She did well for both, although she was a little sensitive to her therapist talking to the nurse (and had a big fat lip)!! She's still congested and was pretty snotty today (with a couple big snotty sneezes)! Tonight she was a little hyper/vocal and ended up having one major meltdown with tears and all! She kept doing this high pitched squeal in my ear...by the end of the night I had a splitting headache!! Eventually she settled down and finally fell asleep with the clonidine. Hopefully she's feeling a little more stable tomorrow!









You could say that Grandma gets into Halloween!

Sunday, November 3, 2013

Sneezy but good!

My sweet girl slept in this morning for the first day of daylight savings time! She didn't wake up til after 8am (which was really 9am)! Ryan, on the other hand, was up at 6am jib jabbering! Reagan has had a good day today. She's pretty much back to 100%! Sweet and spunky! Still congested with a side of sneezy (& runny)! Her brother has also had a few sneezes, I wonder if there's just something in the air right now? We took another walk today, it was a little chilly but nice. I think it's supposed to rain again this week, so I'm glad we were able to get out over the weekend! She's got dental and PM&R (Physical Medicine & Rehabilitation) appta this week, so it will another busy one!!

Saturday, November 2, 2013

Content but congested

Reagan slept well and woke up still congested but content. Today was a good day. She wasn't super happy or smiley, but she was content and definitely seemed to be feeling better (even giving us some laughs). We even went for a walk with grandma and brother, which she seemed to enjoy! So glad she made such a quick recovery!! She's a trooper, this girl!

Friday, November 1, 2013

So much better

Reagan slept well last night and woke up this morning (on her Daddy's birthday) feeling much better! She's had a relatively calm and subdued day today. She's taken a couple naps, still cold clammy hands and feet and keeping her hands in her mouth a lot (and no smiles), but she obviously feels loads better!! She's been a little nasally/congested, but otherwise good. I'm so relieved to see her make such a quick turnaround! Praying for even better days this weekend!

Thursday, October 31, 2013

Unhappy Halloween

Reagan slept well last night but when she woke up this morning, we knew we were in trouble. Very serious, not a smile in sight...then she immediately started grabbing and pulling at her hair, the next thing we knew, she was crying inconsolably! She cried for a while but she did fall back to sleep on her own. She woke again and was actually quiet for a while, but still grabbing and pulling her hair nonstop! Then she escalated and she was crying once more. This time we tried Lortab and it did help her settle down and fall back to sleep, but only for an hour or so. The next time she woke crying Grandma was able to get her back to sleep. The next time, we actually tried some ciproheptadine (Periactin) at a slightly higher dose. Last night after the talk, we were able to speak with a doctor who is known as a bit of a CVS (cyclic vomiting syndrome) expert. I had read about him online and even considered a trip to Ohio to see him, but last night we were able to pull him aside and tell him about Reagan and get his opinion on these "cycles" she goes through. He seems to agree that it sounds like CVS to him. He gave us several suggestions that might be worth trying. One is to just get her in and on an IV during one of these episodes. Start her on dextrose and see if just that alone helps. If not, then try a combination of a sedative (like valium), migraine (like Imitrex), and anti nausea medication (like Zofran) all given via IV. His thought (which makes sense) is that during one of these episodes, her gut shuts down so even though we give her these different medications (which theoretically should help), they are not absorbed properly because of the dysmotility. I don't know. Maybe. I'm not a fan of putting her in the hospital...and we certainly would not be willing to do it every week or week and a half...but I can see merit in having her in patient at least once so that all of her new doctors here in Austin and get to see what it is that she has been going through for the last 4yrs!! He also would really like her to have an EEG during one of her nausea episodes. I don't know, I'm pretty sure she's already had one during an episode of nausea (and it was NOT a seizure), but I'm not 100% positive (maybe I can figure it out through the blog). That's important information to know. He also mentioned cyproheptadine, which she takes occasionally as needed for nausea, but he mentioned that she probably wasn't taking high enough dose for migraine symptoms (or abdominal migraines). Anyway, lots of information, it was a great talk and I'm glad we were able to go! There was no trick or treating tonight for the princess...or the boy either (but just because he wasn't into it)! Please say some extra prayers for my girl to get over this episode quickly!

Wednesday, October 30, 2013

Mini mito conference

Another late one! Reagan was a little restless again last night. I found her in bed wide awake this morning with covers kicked off and her feeding tube pulled up over her head (loosely around her neck)!! I about had a heart attack when I saw that! I'm never quite sure where to put her tube, if I have it down and under the covers she can kick it and get it tangled in her feet (and possibly yank it out), if I have it up, sticking out of the covers she grabs onto it and pulls it over her head!!! This girl! She woke smiling once again today so we were thrilled!! She's had yet another really good day. She had PT, speech (her therapist did a super cute Halloween craft with her), and "school" today! Busy, busy! Tonight Mike and I got away (thanks to our nurse for staying late AGAIN and my stepsister who came over to watch Ryan) to go to a patient/family mito meeting. A mini mito symposium, if you will. It was great! The Child Neurology Society had their yearly conference and dedicated the entire first day to mito! The doctors talked about the fact that they had never seen such a packed house for any talks at ANY conference they had been to! Out of about 1000 practicing pediatric neurologists over 450 were here at this conference, learning first hand about mito from experts in the field!! Very humbling. The speakers were great (and we were able to ask questions throughout) and some exciting new data was presented! Overall a really great experience! So glad we had the opportunity to attend (all thanks to the UMDF)!! And SO glad both kiddos were well behaved while we were gone!!

Tuesday, October 29, 2013

Rollypoller

Reagan slept last night but she was a little restless! She was moving around a lot but still had her eyes closed. Then around 5am she started getting vocal and was obviously awake! I had to get up at 6 to get ready to leave for her early 8am appt with her new geneticist/metabolic specialist, so her being awake was actually a good thing! I was able to get her dressed and ready in advance! I pulled brother out of bed at 7am and we hopped in the car and were off! We did make a quick stop at Grandpa's and handed Ryan off (I knew I was going to have to go over a lot of history with this doctor, so it was better to not have him whining & hanging onto me)! We got stuck in some traffic, but we still managed to get there just in time! They took us back quickly and when they put us in a room I saw the doctor's bag sitting there (always a good sign that you won't be waiting long). He came in shortly thereafter and proceeded to tell me that a lot of Reagan's medical records never made it to him (just the most important ones...like her muscle biopsy results and whole exome sequencing)! He had gone through a lot of what he did get, because he was familiar with some of her medical history (which is refreshing), but he still asked tons more questions to "fill in the holes"! It was a long (almost 2hr) appt. I'm not a huge fan of his personality, but I do think he's highly intelligent...a trait I feel is lacking in some doctors these days!! Anywho, Reagan was great the entire appt. She was quiet (quite the change from yesterday) and didn't seem to mind all of the talking! Afterward, we stopped by and picked up brother who quickly proceeded to doze off in the car! Reagan only had one therapy this afternoon, OT, but she did great for that! She definitely got more vocal as the day went on. Tonight she was a squirmerainer! I left her for a few minutes while I checked on her brother and came back to her completely squirmed off her mat and pulling her tube tight! Is this girl trying to give me a heart attack?!?! She did it again a little later, her tv had turned off due to inactivity and I swear it looked like she was squirming over to it to try to turn it back on!!! Such a rollypolly girl! We did have a tough time getting her to sleep again. We were hoping to do it without medicines but that didn't work! She did eventually doze off thanks to clonidine. Looks like it's gonna be another restless night!







Monday, October 28, 2013

Very vocal

Sorry for the late post! Reagan slept well last night but she did wake up a little early this morning! She was smiley and very vocal all day! I swear she's trying to talk to us! I asked her if she wanted her brother to kiss her the other day and I swear she said NO!! And that same day her therapist was talking to her about a dog and I swear she said DOG!! She's a spunky one! At noon she had speech and then "school"/vision in the afternoon. She did great for both but she was super vocal and excitable. I was a little worried that all of the excitement might actually cause her to end up fussy but she made it through the whole day with a tear! She was getting increasingly on edge as it got later but we finally got her to sleep with a combination of clonidine and Lortab.

Sunday, October 27, 2013

Mellow all day, but agitated tonight

Reagan slept well last night and woke up this morning as sweet as can be! She was very calm and after a bath, she drifted back off. She woke an hour or so later, but she continued to be a little drowsy most of the day. While Reagan was sleeping, we went to lunch with my Dad for his birthday. There was a long wait but Ryan and the guitar player kept us entertained! This afternoon we went to my step sister's house for a Halloween culdesac get together. Reagan was very well behaved and we even decorated a pumpkin to coordinate with her cute Halloween outfit! Ryan was a bit of a mad man, but he really enjoyed running around (in the street) with the other kiddos! When it was time to leave, Reagan started getting a little agitated. We thought it might be the music, but maybe she just wanted to stay? Even after we got her home, she continued to escalate. I gave her clonidine and it agitated her even further! I gave her Lortab and 5min later she was calm! I'm not sure if it's the combination of the two meds that works or if it's just the Lortab? She's asleep in bed now and I'm hoping she'll stay that way. And also hoping she wakes up tomorrow feeling better! We need more good days for our girl!

Saturday, October 26, 2013

Road trip

Reagan slept well last night and woke up sweet and smiley this morning around 7:30am! She and her brother were both up early! Mike went in to work first thing and didn't get back til after 10am. We left shortly thereafter. As we were driving down the road (maybe a half mile from our house), we second guessed as to whether or not we had the correct key for our storage unit. We almost turned around and went back, but we decided to just keep going. It HAD to be the right key, right?!?! So off we went...to Houston or bust! It was smooth sailing until we got to Katy. The traffic on I-10 came to a complete halt! Mike was able to go through the median (thank goodness for 4x4) but then we ended up at a complete standstill on the feeder as well. We later found out that I-10 had a complete shutdown of the freeway in both directions at hwy99! Insanity!! It was an hour or so detour that we didn't have time for! But finally we made it to the uhaul place to pick up our trailer and then we had another 15min or so to the storage facility. When we got there, we grabbed two carts and headed for the unit. The key did not fit!!! Seriously?!?! The keys we had were from the other storage unit we had! So our options were to file a report with the storage facility and have the manager come and cut the lock off in 5-7 business days or to call a locksmith to come out ! Since waiting wasn't an option, we called a locksmith! A couple of the places I called couldn't even remove the maximum security disc lock we had, but finally I found a place that could and they could be there in 15min! Sounded too good to be true! It was!! The guy got lost and ended up on the other side of town! We had to then wait another 45min for him to head back over to our side of town! Once he finally got there and looked at our lock, he proceeded to tell us that there was a $39 fee to come out and an $89 fee to pick the lock!! GREAT!!! Then he fidgeted with the lock for 4min before popping it open!! Crazy!! But at this point we didn't care! We were just happy to be on our way! We loaded up the trailer in 3 trips and were out of there! We did stop by our old neighbors' houses before heading back! They were happy to see us, but not too happy that we left both kids at home!! Reagan and Ryan did well without us. Reagan had a but of a sleepy day, showing a couple signs of nausea tonight (and biting her lower lip repeatedly), but overall she had a good day. Ryan was good and enjoyed getting outside with Grandpa! We had a much smoother drive on our way back, we avoided I-10 and took 290. That was definitely a good choice! We made it home in record time (getting home right at 9:30)...Ryan was already asleep and Reagan was almost there! I've got to thank our nurse and my dad for doing such a great job with the kiddos! It was a much longer trip than we expected, but they were troopers and we SO could not have done it without them! And a nice bonus, Mike and I had more alone time than we've had in 6yrs!! But glad to be home safe and sound and back with our little ones!!