Monday, December 31, 2012


Reagan slept well last night and woke up this morning smiling. She's been a good girl today. Smiley and sweet. Still a little chokey at times, but not as bad as yesterday. There were a few times she got a little vocal and sounded like she was about to lose it, but we were able to calm her down each time and somehow avoided a meltdown. We definitely need more good days, so hopefully she hangs in there and stays happy (and healthy). My dad and stepmom were here with us over the weekend and last night she started feeling bad and this morning she felt awful! She went in to a ready clinic today after going back home and she has the FLU! Not good. Not good at all. Ryan has been super needy today and taking longer than usual naps, which makes me a little nervous. I started Reagan on Tamiflu (Ryan's leftover medicine)...hopefully she avoids it. Please continue to keep my girl in your prayers! We were without power tonight for 2hrs or so...Happy New Year! The power is back on now, so that's good. Time to go to bed (now that it's 1:30am)!

Sunday, December 30, 2012

Chokey but better

Reagan slept all night last night and then continued sleeping this morning! She woke up around 11am (with eyes caked shut), but she was smiling and a sweet, happy girl. She only made it about 1.5hr awake before falling back to sleep. She slept for a couple more hours and then woke back up and stayed awake the rest of the night. She's been very chokey. Not really gaggy or nauseous, but she keeps making this chokey sort of noise over and over again. I don't know if her throat is just dry from sleeping for so long or what. She's been a good girl though, so we're sure happy to see that! Hopefully we've got at least a few good days ahead of us...we need to recoup from last week (bad days and a teething baby...not a good combination)!! I'm SO TIRED!!!

Saturday, December 29, 2012

Sleep at last

Reagan spent the whole night awake again. As we were going to sleep, she was finally dozing off in the night nurse's arms. When she fell asleep, the nurse laid her down and ran to the bathroom. By the time she got back, Reagan was awake and moving around again. She picked her up and held her again but all of a sudden she started crying. She cried off and on for a while. Again, nothing seemed to help her. She finally settled down, but never went back to sleep. Mike had to go in to work this morning, so I had to wrangle both of the kiddos for a while. Reagan was still very tense but not fussy. You could tell she was exhausted but her body just wasn't letting her sleep (and neither was her brother)! Finally around 4pm she seemed to be getting tired so Mike laid down in bed with her and was able to get her to sleep. She was restless but finally drifted off and has been sleeping ever since. Poor girl. She's so exhausted! It's been a rough week for her. Please keep it in our prayers that she has some good days really soon!

Friday, December 28, 2012

Not yet

I was hoping we were past all the drama of this week, but no, not yet. Last night Reagan had the crazy laughs...ALL NIGHT LONG! She seriously laughed nonstop all night! This kind of laughing is definitely neurological and there's a fine line between the laughing nonstop and crying nonstop. There was a point where she was looking a little sleepy around 11:30pm or so, but she kept jolting back awake every time she'd drift off. So I gave her a dose of clonidine, but instead of helping her sleep, it seemed to do the opposite! She was wide awake and the laughing was out of control. This morning she was OK, but I could tell that she was a little on edge. She made it through PT without a problem and actually even seemed to relax and look a little sleepy at one point. Then her nurse went to change out her bag of formula and put Reagan in her chair and then all of a sudden she started crying nonstop and bit herself!! She bit her left middle finger right along the nail bed and broke the skin on the tip on the other side. There was blood and a lot of crying...although I'm not sure if the crying was due to her finger or whatever upset her in the first place. After an hour or two of crying...she did finally calm down. Her chorea has been out of control bad today (like she's running in place). We've also seen her throw both arms out a few times...which always makes us nervous (resembles infantile spasms movement)...but her nervous system is obviously completely out of whack right now (so hopefully its nothing to worry about). She's SO tense, she's sweating profusely (soaking her shirt and hair), but her hands and feet are like icicles. Ugh. What are we going to do with this girl?!?! I talked to her palliative care doctor today about attempting to better manage her pain. We're going to try Toradol (which was the only thing that helped her pain after her g-tube surgery) and also give Morphine another try (the first time we tried it, we only gave her one dose and it didn't do anything except give her a red nose and chin which might have been an allergic reaction). We want to try the Fentanyl patch, but he's hesitant to just jump to that without trying a lesser opiate first. So that's the plan. Still trying to fine something to help manage her discomfort on these bad days! Please keep it in your prayers that she can get some sleep tonight and wake up with some normal, happy days!!

Thursday, December 27, 2012

Almost done?

Reagan slept well last night. She woke up wide eyed and a little startled but she settled down and seemed OK. Her OT came and worked with her and she actually did well with that. Then she only went downhill from there. She started crying when getting her diaper changed and then just kept crying! We were able to get her to settle down eventually and she relaxed a little and then had a big dirty diaper! She started crying again while getting that changed but then calmed back down afterward. Poor thing! Her tummy must have been hurting her!! She was calm the rest of the afternoon but still very serious and having a lot of chorea. She made gaggy sounds a few times today, but no actual throw ups. Then around 5pm she turned on the crazy laughs and she's been laughing ever since! I'll take the laughs, crazy or otherwise, any day over what we've been dealing with! Hopefully this means we're almost completely done with these bad days! I can hardly wait to have my happy smiling girl back again! Below are some pics from Christmas morning...definitely no smiles from our girl there!

Love these pics of Ryan with my sister's fiancé, Dan! (Notice the dogs peeking through in the mom's afghan and my sister's cocker and german shorthair pointer...we had a full house!)

Wednesday, December 26, 2012

Stressed but getting better

Reagan actually slept OK last night, but that's because Daddy laid down and snuggled with her (and then fell asleep and slept there for the next few hours)! She woke up still stressed this morning, but she settled down a little and actually had a decent session with her OT. She was pretty calm the rest of the day, but still tense and a little nauseous (just little coughs here and throw ups). Hopefully tomorrow she'll be feeling even better. It's definitely been a rough couple of days for our girl. It sucks that it had to fall on Christmas eve/Christmas day! Thank you for keeping her in your prayers (I promise to post some pics tomorrow...right now my bed is calling my name)!

Tuesday, December 25, 2012

Not so happy Christmas morning

Last night was another rough night for our girl. She woke up crying, just as I was getting her brother back to sleep. Daddy laid down with her but she wasn't settling down. We had to put her arm restraint back on and move her back into her chair where she did finally fall back to sleep. She's been miserable again today. She goes through periods where she fusses and yells a lot and extremely agitated, and then periods of "don't even look at me, just leave me alone". So needless to say...not the best day for Christmas morning! We pushed on though and opened the thousands of presents Grandma, I mean, Santa brought.  My sister, her fiance, and their dogs were all in attendance. Reagan didn't want to have much to do with anyone and Ryan was just as happy playing with empty boxes as he was with his new toys. We narrowly escaped a trip to the emergency room when Reagan's tube got stuck on something and the whole center of her button popped out! Thankfully Mike was able to pop it back into place and it seems to be working OK, so crisis averted! We got a late start and didn't even finish unwrapping everything til after noon! So our Christmas lunch plans quickly turned into Christmas dinner (and we should be set on food for the next month or so)! It's now well past midnight and everyone is in bed, so it's time for me to do the same! Praying my girl gets some sleep and wakes up feeling better in the morning! (I'll post Christmas pics tomorrow!)

Monday, December 24, 2012

Definitely NOT better!!!

Not a good day for my girl. She woke up crying during the night and there were lots of tears shed...especially in the morning. As the day went on, she calmed down a little but she was still very tense and miserable. It was definitely NOT a better day...this was clearly a BAD day for our girl! This was not at all what we were hoping for, as she spent most of her day in a great deal of pain (and wearing her arm restraint)! She finally quieted down a little tonight but she didn't want to be messed with and was easily agitated just by our presence! Definitely a bad day, and brother is already fighting sleep tonight, so it promises to be a long one!

Sunday, December 23, 2012

Getting better?

Reagan only slept about half the night last night. She woke up around 3-4am and then never fell back to sleep! She was good though and just laid in bed kicking around until we got up around 7:30am. Her brother continues to be impossible at night (and during the day)! Both top teeth are now out but his sleep and his mood is yet to improve! Reagan woke up still very serious with the occasional crying meltdown, but she definitely seemed to get better as the day went on. She was still very tense and sensitive to certain things (Adele on tv left her in tears...not the good kind). Still having lots of chorea but tonight she was keeping her hands more still and down by her side. With her legs moving around and her arms under her legs the way they were, she looked like an Irish step dancer! Her temperature regulation is still WAY off. Her body is constantly over heating leaving her soaked in sweat but her arms/hands and legs/feet are as cold as ice! We're still hoping that we're past the worst of it and there are only good days ahead of us. So thankful that our girl may have missed out on the worst of it this time around! And as Christmas nears I'm just thankful to have our girl here with us, knowing so many who have little ones who have gotten their wings way too soon! Thank you for checking in on our girl and wishing everyone a very merry Christmas!!

Saturday, December 22, 2012

Mild bad days?

We had a rough night last night. Reagan was on the verge of tears before bedtime and then woke crying during the night as well. Of course Ryan had to wake up several times too...just to make it interesting. Needless to say, no one got a lot of sleep. Reagan woke up very fussy this morning and we've been battling tears all day today. She's been very sensitive (especially to mommy talking) and has had quite a lot of little meltdowns. She'll cry for little spurts but she calms down fairly quickly, which is not the usual bad day scenario. I don't know if this is some sort of mild version of bad days or if this is just the calm before the storm. I'm hoping the former rather than the latter. She's still tense and bursts into tears out of no where, but it's not the nonstop crying all day that we're used to. Of course this is with around the clock Ibuprofen and Lortab (which hasn't made her sleepy at all). She's been super clammy and has a definite "bad day smell", but we're hoping to somehow avoid the worst of the bad days. Hopefully she can get some sleep tonight and wake up feeling better (Grandma is here, so that has definitely helped)! Thank you for keeping our girl in your prayers!!

Friday, December 21, 2012

A little on edge

Reagan slept all night last night (and didn't seem to move an inch) and woke up this morning still smiling. She was a little more tense, more chorea, and a little more kooky today...but still good overall. She had PT this morning and did really well with that. So well, we even put her in the stander for an hour afterward and she did just fine with that too. She did have a few moments today where a little too much stimulation almost pushed her over the edge, but she was OK. The only meltdown she did have was tonight, right before she had a dirty diaper (for which she was overdue)! Poor thing. I could kinda hear it in her just sounded like a poop cry. She calmed down afterward and was OK the rest of the night. Definitely a little on edge though. We don't really know what to expect over the next few days, but still hoping for the best (Grandma comes in tomorrow). Just a little update...Hudson has had a miraculous recovery and he is already back home. Definitely an answer to prayers. Lucy is improving on iv antibiotics and looks like they may let her go home tomorrow...reading her mom's post totally made me cry! And Liam...I'm sad to report...Liam passed away today. I didn't "know" Liam well, I had just started following him on Facebook about a month ago, but he was a precious little boy with cerebral atrophy and suspected mito. He had been having some worsening seizures the last few days...very sad. Please keep his family in your prayers.

Thursday, December 20, 2012

Finally awake

Reagan woke up this morning (with my urging). She did wake up happy from her long winter's nap! She has been a good girl today. A little groggy and a little excitable at times. She actually fell asleep during speech therapy as her therapist was feeding her!! She was eating pretty well and then pow...asleep! She slept until PT came and was stretching her feet...actually she made it through almost all of the stretching asleep, I actually think it was her brother's temper tantrum that woke her up! She did get a little over excited by a few toys today and then again tonight for whatever reason. Overall, I'd say it was a good day, with just a hint of crazy! Still hoping she either holds on and continues to have good days through Christmas, or she gets over with them ASAP so she can still salvage Christmas! Thank you for checking in on our girl! (And please continue to keep Lucy, Hudson, & Liam in your prayers!)

Wednesday, December 19, 2012

Sleeping the day away

Reagan seemed to be fighting sleep a little last night but she was sweet and snuggly so the night nurse didn't seem to mind. I finally gave her clonidine around 11pm and by midnight she was out! The nurse reluctantly put her in bed (she would prefer to hold her all night), and there she slept all night long...and then all day long! Our girl has had a sleepy day today, to say the least. She's moved around, stretched here and there, even opening her eyes for a minute or so at a time (and we've changed 3 diapers)...but she never woke up! I certainly wasn't expecting this, but I guess she needed we let her sleep! Hopefully she sleeps through the night and wakes up a happy girl tomorrow (she did give me some smiles today while moving and stretching that's a good sign)! We're hoping and praying for good days for our girl over the Christmas holiday! And if you could, would you please say a prayer for Lucy! She's a precious little girl who also has mito and she's really struggling in the hospital right now. To be in the hospital during Christmas is rotten to begin with, but to really be struggling and in bad shape, very scary! Please keep her in your prayers!

Tuesday, December 18, 2012

Sweet and precious girl

Late post. I should already be in bed...for some reason my bedtime keeps getting later and later each night!?!? Reagan has had a good day today. She was a little restless and laughy last night, which continued for the first part of the day, but she did mellow out a little as the day went on. She had OT this morning and PT this afternoon and she did well with both. Tonight she was super sweet and precious. Hoping she can hang on with these good days til Christmas (or at least go all the way through another bad cycle BEFORE Christmas)! I'll leave you with a few pics of her and her brother today...

Monday, December 17, 2012

Good day, crazy laughs

Reagan slept the whole night through again last night and woke up a sweet girl again this morning! She's been a great mood, giving us smiles, laughs, all day today! She had OT this morning, then speech at noon, and then vision/OT this afternoon and she did wonderful for everything! She got a little too crazy with the iPad today, but overall, she's been good...crazy laughs...but good. Tonight the crazy laughs kicked into high gear and then right as it was time for bed, she started getting really crazy. We aren't sure if it's the clonidine (sometimes it seems to have the opposite effect we want it to have on her) or what, but she really went over the edge and was almost crying. Mike tried laying in bed with her and that was a no go, so now she's back in her chair. Not sure what tonight holds for my princess. Please keep her in your prayers! We've got an early morning appt with GI tomorrow, so I hope all is well in the morning!

Sunday, December 16, 2012

Sweet girl, miserable teething boy

Reagan slept well last night IN HER OWN BED!!! Yeah!! So glad she got out of the chair and actually slept in a bed! She also woke up this morning surprisingly normal! She's been pretty laid back, sweet, and giggly today!! So relieved to see this! It would seem that she's already come out of the bad days! Hopefully that's the case and hopefully we'll have a nice long good streak this time around! Tonight she was acting a little crazy. She kept taking a big gasp in and then she'd laugh or let out this high pitched squeal! She did it for quite a while tonight. And then right before bedtime, she had the crazy laughs! I'm hoping she can settle down and get a good night's sleep again tonight! Now...on to our problem child! Ryan is really not handling teething very well! He's up and down crying all night (and I'm getting up with him)!! I feel like I'm awake more than I'm asleep the last couple nights! And during the day, he's not much better! Very fussy, throwing temper tantrums, very drooly. I'm SO ready for this to be over. Please keep it in your prayers that he gets over the hump soon and that Reagan continues to have good days!!

Saturday, December 15, 2012

Stressed but better

Reagan slept the whole night last night (in her chair)...which is more than I can say for her brother! Ryan has been a nightmare with this teething! He is waking up crying every hour some nights! I'm hoping he's going to get over this soon, but those teeth are big and they are not even close to being all the way out yet! During the day he's no piece of cake either. Fighting naps, fussing and fighting, BITING (yes, I have a bruise on my shoulder from him)!! He's trouble. Reagan was surprisingly good today. By good, I don't really mean good, I mean better than expected. She was still very tense and stressed/serious...but she wasn't really fussy or crying. She did wake a little agitated this morning, but after a dose of ibuprofen she seemed to settle down and even fell asleep for a bit. She slept off and on today, but when she was awake, she was calm (stressed but calm). She definitely didn't like to have her diaper changed...but other than that, she was pretty good. I'm hoping maybe we are turning a corner. Please keep our sweet girl in your prayers for better days!

Friday, December 14, 2012

LONG night, LONG day

Reagan was asleep last night (in her chair) when the nurse got here. She wheeled her into her therapy room and a little while later I heard fussing. I went in and she was awake and sounded upset. Thirty minutes or so later, she had a dirty diaper, so we figured it was just her tummy hurting her and hopefully she'd feel better. Better only lasted for another short while and then the crying started! It was pretty clear we had jumped straight into bad days! The crying and fussing continued on all night. The nurse spent half her time walking around with Reagan and keeping her in the kitchen, hoping we would not hear her and be able to sleep! Sleep wasn't happening, but that wasn't Reagan's fault...Ryan's other top tooth is coming through and he is not sleeping worth a flip! He woke up crying every 1-2hrs all night long. So it was a LONG night...and then we had a LONG day. Reagan was pretty much miserable all day long. When she was awake, she was crying/moaning. Sometimes she seemed better when you would hold her, sometimes she hated to be held and only wanted to be left alone in her chair...all of the time she seemed to prefer being held and walked around (which no one can do for very long because she's so heavy)!! Tonight she was really giving us hell...I swear she was fighting with us. Thrashing around, biting, and kicking while I tried to change her shirt and then diaper! Mike tried holding her and she fought him as well. Then I picked her up and walked around with her and she calmed down! I really think it was a fit. A well deserved fit...because something is obviously hurting her...but a fit nonetheless! I wish we knew what it was. I hate to see her suffer the way she does. This past good streak did not last nearly long enough. Today nothing seemed to help other than the Ibuprofen. That would seem to support the idea that something inflammatory is going on. Not sure what or how we would identify what? I'm definitely thinking we need something else...something to better help her with this pain (if we can't stop it, we need to treat it)! I'm considering talking to her palliative care doctor about the Fentanyl patch. Any suggestions/opinions on that??? We're also still considering the Lyrica. I sure wish we didn't have to eeny meeny miny moe medications!! I just want some relief for my girl! Please keep her (and her rascal brother) in your prayers! It's going to be a loooooong weekend!

Thursday, December 13, 2012

A little on the crazy side

Reagan didn't sleep too well last night. She was very amped up and super vocal at bedtime. The clonidine didn't seem to do a thing for her. We had our night nurse here, so she sat up with her. She said she fell asleep in her chair for a bit but woke up the second she tried to lay her down. When she fell back to sleep, she just left her in her chair where she slept for the rest of the night. Her brother is teething right now (one top tooth is out and the other is working on it) and he's not sleeping much at all at night. Not to mention he's super cranky/needy during the day as well! Fun times! Reagan woke up this morning around 8am...a lot more serious than she's been lately. She cheered up as the day went on and she's been very vocal again and also giving us the crazy laughs. She had FOUR therapies today and did really well for all of them. During speech she ate...she wasn't as excited about it today as she was yesterday, but she still did a good job. The after PT, she even made it an hour in her stander without so much as a peep (I don't even remember the last time she was in her stander...I know, bad mommy)!! We're definitely seeing some signs of impending off/bad days (crazy yells/laughs, bad day smell, not sleeping as well, and medication not working), but hopefully we can stretch these good days out at least a little while longer!

Wednesday, December 12, 2012

Happy vocal girl

Reagan slept well last night and had another great day today. She's been very vocal again (tonight a little crazy vocal)! She had several therapies today and did great for them all. She was a happy girl. Kicking and squirming around on the floor. Very interactive. Tonight she had the giggles...which was too cute! She doesn't sound as nasally as she did the last couple days so that's good, but she does keep doing this little cough (more like a choke/cough)...not sure what that's about. I hope we can get her to settle down and go to sleep tonight! We've got a night nurse tonight and tomorrow night, but she needs her sleep!

Tuesday, December 11, 2012


Reagan slept well again last night and woke up happy and spunky again this morning. Still very vocal, still very smiley...we decided today would be the day to get out and see Santa. She had OT this morning and then we skipped PT for Santa. There was a bit of a line, but Ryan and I waited in it and Reagan's nurse pushed her around until it was our turn. I was a little worried that Ryan might cry (since all the kids before us did), so we took a couple with just Reagan. But when it was time and I sat him in Santa's lap beside his sister, he just sat there and stared. No smiles (Reagan was smiling away), but no crying either! Reagan was great! Santa even remembered her from last year (well of course he did...he's Santa)!!! It couldn't have gone much better!!

Monday, December 10, 2012

Talky talk

Reagan slept well last night and woke up a smiley girl again this morning! Loving the smiles!! Today would have been a perfect Santa day, but we didn't have a nurse til 1pm, so it just wasn't in the cards. Hopefully we can try to get out and do it tomorrow. Reagan had OT, speech, and vision/OT today. All therapies went really well...OT commented that it was her best session yet! She really has been a sweet girl today. Very talkative (sometimes crazy talkative)!! But she's been good all day, so we're super happy about that! She's still a little congested, so we're just continuing with the saline and hoping for the best. I'm still having some respiratory issues but without a nurse, there was no chance of me getting in to the doctor. I may have to get in and get on something to clear this junk up! Praying for many more good days for my girl!!

Sunday, December 9, 2012


Reagan slept well and woke up in a good mood this morning. She was a little congested sounding, so I gave her some saline spray up the nose (she loves that)! She's also been a little coughy today, but I can't tell if it's an acutal cough or just her way of dealing with drainage down the back of her throat! Ryan and I have both been more sinusy the last couple days and last night my sore throat was keeping me up. I also have a dry cough and shortness of breath. I'm not sure if I have some sort of secondary infection or what. I'm hoping it's nothing contagious, but I don't like the fact that Reagan already seems to be having sinus issues right now. Definitely makes me nervous. I am glad that she's a happy girl right now! She did have 4 poopy diapers today (so I'm guessing her tummy feels much better)!! The first two were loose, then the third was a super hard doozy, and then she had a major liquid blowout for Daddy!! Poor girl! Definitely glad she got that out! I'm hoping for a great week for my girl this week! I've already gotten a call from the nursing agency that we won't have a nurse tomorrow, so no Santa tomorrow, but I'm determined to get that done this week!! Thank you for checking in on our girl! Prayers for health and a good week!

Saturday, December 8, 2012

Sweet sleepy girl

My girl slept well last night!!! She fought it a little at first, we were afraid she might not sleep at all again, but she settled down and Daddy got her to sleep. And then she not only slept all night, but she slept most of the day!! She woke up around noon and was awake for a little while, smiling and just as sweet as can be, then she fell back to sleep and pretty much slept the rest of the day/night. She'd crack her eyes open here and there and smile, but she was pretty much asleep! She obviously needed it, so I'm glad she got it! She was still tense while awake, but very smiley, so I'm happy about that. Yesterday she was a little gurgly in her throat (I'm assuming it was just spit), but her nose was also a little boogy. Today I woke up with a super sore throat and a bit of a cough. I'm hoping it's just a sinus infection or something...hopefully nothing contagious! My girl needs to stay healthy...she's got enough on her plate without catching any of the yuckiness that's been going around! Please continue to keep her in your prayers!! I'm hoping for some really great days next week!

Friday, December 7, 2012

Getting better?

Reagan was up all night last night. She was quiet and content to just sit in her chair kicking around...but she wouldn't sleep and we couldn't lay her down! This morning she was still very tense and bitey. We left her arm restraint on most of the morning. She seemed to calm down a bit in the afternoon, so we took it off but kept a close eye on her. She had PT early, then OT, and then vision. She actually did better than expected. Tonight she really seemed to become more alert and present...we got some smiles and she was making good eye contact! I'm hoping this means she's finally coming out of the bad days! She dozed off after her clonidine, so hopefully she's able to stay asleep and get some rest tonight! Time for me to do the same!! Thank you for keeping our girl in your prayers!

Thursday, December 6, 2012

Another rough one

Reagan didn't sleep much at all last night. Her night nurse held her most of the night. She said anytime she'd doze off and then try to lay her down, she'd immediately wake right back up thrashing around! She's been wide awake all day today as well. Lots of chorea, very tense/stressed, not wanting to be messed with (hating diaper changes)!! It's been another rough day. I'm not sure what's going on. This has been a particularly long bad streak...her first "bad day" was Monday, but she didn't really have great days last week either! This just sucks! I hate it that she has to suffer like this. There's nothing we can do but just sit and wait for this to pass. I want my girl back!!! Please keep her in your prayers!!!

Wednesday, December 5, 2012

Still feeling rotten

Reagan slept well last night, of course, it was in her chair, but we take what we can get! She woke up still in a rotten mood and just not feeling well. She did have a big dirty diaper and then seemed to settle down a bit and get sleepy. She's a light sleeper though and woke back up with a vengeance! Poor girl. It was another rough one. She did finally settle down a little tonight. She stopped fussing but the chorea was out of control and she was still extremely tense. She did finally doze off in the night nurse's arms but she was really restless and was tired for a while, she just couldn't fall and stay asleep! Hopefully she sleeps tonight and wakes up significantly better tomorrow. She needs some decent days!! Grandma wants her to be able to enjoy the new inflatable she got for her!!

Tuesday, December 4, 2012

Miserable day

It's been a looooong day! Reagan woke up at 2am yelling and then proceeded to yell nonstop for an hour or so before finally dozing off in her chair (then it was her brother's turn to keep me awake). She slept til 7:45am and then woke up and was just kicking and flailing around (but quiet). Then I came into the room and said two words to her and that was it! She started back up with the yelling! She yelled/cried/moaned all morning long. Every now and then she'd doze off or quiet down for a minute or so and then it would hit her and she'd jolt back into the yelling. She hated to be messed with, talked to, given medicine, any interaction whatsoever! She finally stopped fussing around 4pm or so and was quiet for a few hours (but still stressed and tense). Then tonight it hit her again and she was miserable. Mike and I were able to hold her and get her to settle down and even fall asleep for a bit, but it was shortlived and the second we moved, the craziness came back. It really is like trying to hold a wild animal. The noises she makes, the biting, flailing, scratching...she's inconsolable! She can't tell us what's hurting her. Nothing we give her helps. It's misery for her, it's misery for us! It's very frustrating, depressing, defeating. Please keep it in your prayers that she can sleep tonight and that she wakes up feeling better tomorrow. (I feel like singing the song from Annie...The sun will come out, tomorrow!)

Monday, December 3, 2012

Not good

Today has definitely not been a great day for my girl, but it could have been worse. She slept most of the night last night and she and her brother were both up early this morning. There were no smiles and she was easily agitated, but for the most part she's had a mildly bad day. She did OK with OT this morning, but most of the day she didn't want to be messed with and just wanted to sit in her chair (so diaper changes were no fun at all). She made it all day without an arm restraint but then she got pretty agitated tonight (when we were messing with her), so we put it on just to be on the safe side (she's still got marks from 1-2 weeks ago on her arm)! So needless to say, there was no Santa today. Oh well. We'll get it. Hopefully sooner, rather than later. Please keep my girl in your prayers...we're hoping she'll get through without any real bad days this go round!!

So tired!! This one is keeping me up A LOT at night...he's still got a nasty cough and he's teething. He had his 9month old well baby checkup this morning and he weighs 25lb 5oz (97%), 30 in height  (93%), and head circumference 19in (98%). And other than having the flu...everything looks good!

Sunday, December 2, 2012

Still smiling

Reagan slept a little better last night. She did wake up a little early, but she was fairly quiet. Finally around 6:30am Daddy got up with her only to find a huge stink in her room!! There was a present waiting for Mommy (why is it always for mommy?)!! That was actually only the first of FOUR dirty diapers today!! That might be a record! And I'm guessing her tummy must have felt better after all that! She was a good girl again today. Definitely high strung with crazy laughs and a little on edge (with one slight meltdown this morning), but overall she was good a girl. Still for that we were very happy!! I'm hoping for at least one more good day...if we get it, we're going to try to do Santa pictures tomorrow!! Please continue to keep our sweet girl in your prayers!

Saturday, December 1, 2012

Surprisingly good

Reagan woke up crying last night about an hour after putting her in bed. I gave her a dose of Lortab and Daddy was able to get her settled down and back to sleep. She slept til about 6am or so when I noticed her awake and just smiling in her bed. I got up with her at about 7:30am and she was good. Definitely not a fan of her brother making noise (or music on tv), but otherwise surprisingly good!! (We were hoping for the best, expecting the worst!) She's been very smiley and laid back today. Hanging out in her giant blob bean bag chair. Kicking and rolling a lot. Her temperature control is all out of whack. Ice cold arms and legs, hot and sweaty body! No clue what the next couple days will hold but we're sure enjoying these smiles while we can get them!! Ryan is still on the fussy side today but his fever is finally going away, so hopefully he's getting over the nastiness. He keeps coughing and making me nervous! We've got to keep this girl healthy!! Thank you for continuing to keep us in your prayers!!

Friday, November 30, 2012

Miserable boy, girl on edge

It was a rough night last night. Thankfully Reagan slept most of the night, but Ryan (and Mommy and Daddy) did not! Ryan ran a fever of 101-102+ all night long and even when he was sleeping, he was moaning! He woke up every hour or so and I'd have to get up with him. A couple times I brought him back to our bed, but he wasn't comfortable there either. Poor little guy. This morning his fever went away and I thought maybe we were in the clear, but that was short lived and it came back quickly. It's difficult just getting him to take the tylenol and ibuprofen but there is NO getting the Tamiflu into him. I took it back to the pharmacy and had flavoring added to it last night but this morning when I mixed it with yogurt, he immediately tasted it and then refused to eat the yogurt. I tasted it and I don't blame him!! I nearly threw up myself, it tasted so awful! I'm not sure how anyone is able to get their child to take Tamiflu in the liquid form! I'm just glad we're able to give Reagan hers through her tube! It's looking like Ryan is just going to have to ride it out, because Tamiflu is not getting in this boy!! He's still pretty miserable today. Very clingy, whiny, crying...after a long night, it's been a long day! Reagan has been OK today. She's still definitely on edge, but still smiling for the most part. She did have a HUGE meltdown this afternoon when her nurse tried to give her the iPad to play with! She started crying hysterically...just too much stimulation, I guess! She also almost lost it just from music playing on a commercial on TV! She is SO sensitive to music lately (especially piano)! Needless to say, this weekend is looking like it's going to be a peach! Please keep us all in your prayers!!!

Thursday, November 29, 2012

The FLU?!?!

Reagan slept well last night...waking up just around 6am (also Ryan's favorite time to wake up). She's been very similar to yesterday. Very vocal...I might cry any minute sort of vocal! She was this close to a meltdown multiple times today (a few of the times in response to MY voice...Daddy was loving that)...but she held it together and never shed a tear. Definitely on edge. Hoping to avoid a bad day...but even more so, hoping to avoid a SICK day! The biggest news of the day was that Ryan was more fussy than his usual whiny self (and you could just tell he didn't feel well) and he spiked a fever. So I ran him into the pediatrician, only to find out he has the FLU!!!! Yes, that's right...the flu! Ugh. Not sure how it happened. Maybe it's the endless stream of people coming into our house, or the fact that I take him everywhere I go every single day, or his Daddy not washing his hands...who knows?!?! And the thing is, I have it too! I started feeling some respiratory something yesterday and then today I'm full on SICK! I just can't believe it's the flu! As of now, Reagan is still looking OK, so please, please, please keep her in your prayers! We all started Tamiflu today so hopefully that will help everyone (but Ryan took one drop of it and then proceeded to puke his guts his defense it does taste aweful...I'm glad we have capsules)! So please keep us all in your prayers! My little boy is still sporting a fever and just as miserable as can be!!

Wednesday, November 28, 2012


Reagan slept well last night and woke up this morning raring to go! She's been a bundle of energy...moving around a lot, hands constantly up in her hair, lots of vocalizations (some of which are on the crazy side and make us worry a little)! She had speech (through the school system) and "school" today. She did OK for both. She did get a little yawny during speech, but she never really took a nap. She had a lot of gas today, but no poop, that is not until tonight!! (She wanted mommy to change it!) Poor girl! That really had to be hurting her tummy (she clenches and clenches and holds it in)!! She's a sweet girl though and I just hope she can hang on and continue to have good days. We have a night nurse tonight, so if she decides to wake up, at least we've got that covered!

This is the blob (a 6' foam bean bag chair Grandma ordered for her). It's HUGE!!! We may not keep it though, because it doesn't have a removable cover (a necessity with Reagan)!! If it looks like it will work well for her, we'll probably have to get the more expensive one that has a removable cover!

Tuesday, November 27, 2012

Sleep & smiles

Reagan finally slept last night!!!! On her own, without any clonidine, she fell asleep and then slept the entire night and almost the entire day! She was OUT! Her PT came at 2pm and she was just going to do a "caregiver education" lesson with her nurse and Reagan started stretching around and woke up!! I rushed in there to talk to her and try to make sure she was waking up happy, and my sweet girl smiled up at me just as precious as can be!!! She had a HUGE wet diaper! Poor girl. She actually did great with PT and then fell back to sleep only minutes after finishing! (So she wasn't even awake a full hour!) She slept the rest of the afternoon in her chair and then we transferred her back to her bed where she continued to sleep til right around 9:30pm, when she decided to wake up and grace us with her presence!! She's still smiling, but she's yawning so she should go back to sleep soon! I'm just glad she finally got some much needed sleep (and when she did wake up, she was smiling)!! Now, I'm just hoping she'll wake up tomorrow with more smiles for us!!!

Monday, November 26, 2012

Rough nights

I'm not really sure what's been going on lately with Miss Reagan. She's been good during the day, not overly happy, but content. Still a few little things off like temp regulation or chorea (although that was improved today), but her nights have been WAY off! Last night she went to sleep and then woke less than an hour later crying! Again! Daddy tried to calm her down but it just wasn't working, so we moved her back into the living room and put her in her chair, where she promptly stopped crying! She eventually dozed back off but that was short lived. She'd doze for a minute or two and then wake up flailing (and wiping her face) for 8-10min, over and over and over. Finally I put her arm in a restraint just to keep it out of her face and that seemed to calm her a little. She still didn't sleep though. And she didn't rest today either! Poor girl. She's got to be exhausted! She was a good girl today. Her OT went on and on about how well she did this morning and then this afternoon she had vision/OT through the school system! She's been smiley all day...but oh so gaggy! Lots of coughs and gags but no throw ups all day...that is, not until tonight! Tonight she threw up A LOT. I drained her tummy, but that didn't seem to give her any relief. Tonight we switched back over to pedialyte. We've had to do that once a week for the last couple weeks. Not sure what's causing the increase in nausea! Her doctor did order labs the other day to check her blood Nortriptyline levels and they were undetectable! (Nortriptyline is what she takes to help with the cyclic vomiting.) So despite taking a pretty high dose of Nortriptyline 3x a day, it's not showing up in her blood! His suggestion was to increase her dose, so this week, that's what I've done (of course that also means we'll have to go back in for blood work again to check her levels). Hopefully we'll see an improvement in the nausea department. And more importantly...hopefully we'll see an improvement in the sleep department! My girl needs her rest!! Thank you for keeping her in your prayers!

Sunday, November 25, 2012

Fussy sleep

Reagan had another fussy night in the sleep department! I have NO idea what's going on with this girl! Well, actually I have an idea, but this is still so unlike her! She doesn't typically have good or decent days and then have bad nights (maybe sleepless, but not fussy)! When I got up with her she was having a lot of gas (and she's had quite a bit today), so maybe that was hurting her?!?! I don't know. She slept til about 4am and then woke fussing. I got up, but it took Daddy to finally get her settled down and back to sleep! She's been good today though. Overall smiley, some crazy laughs, but lots of chorea and cold, clammy hands and feet (and a hot, sweaty body). I also drained quite a bit of fluid from her sometging is definitely going on in thst tummy of hers. The line between good and bad days has definitely been harder to spot lately. We are having far less (or maybe none) 100% good days and far too many bad/off days for my liking. She's also really chewing on her hands. She has a couple new bite marks on her left hand...obviously nothing done on purpose, but when you're constantly chewing on your hands, you're eventually going to nip yourself! What can we do?? I bought her a chewlery necklace. She does hold onto it and chew on it occasionally, but she still prefers her fingers. I'm hoping for a good week next week! She's missed lots of therapy with the holidays, so hopefully she'll be able to catch up and have a productive week?!?! Praying for sweet dreams for my girl tonight!
(**Update-No such luck! It's 2am and I'm up with a fussy, flailing girl! Pray that we can get to the bottom of this!!**)

Saturday, November 24, 2012

Deja vu-ish

Reagan had another rough night last night (and so did we). It was a little deja vu-ish. She started getting a little agitated the later it got. She eventually went to sleep but woke up crying and upset again. She wasn't calming down so we moved her back to her chair where she finally settled down and went back to sleep! We're not really sure what was bothering her, but she did have two very liquidy diapers this my guess is tummy pains. She does seem to be feeling a little better today. She wasn't crazy about being laid down for diaper changes, but other than that, she was pretty easy going. We had some smiles and quite a few crazy laughs as well. We attempted to put up our Christmas tree today, but after finding out that something was living in the box and we had more lights out than we did working (and Mike couldn't fix it after hours of trying)...we decided we have to get a new one. I'm not sure how long they are supposed to last, but I guessing longer than this one did. Anywho...maybe we'll get started on Christmas tomorrow! I sure hope my girl gets some rest tonight!!

Friday, November 23, 2012

Fussy night, decent day

Reagan didn't have such a great night. She woke up crying (like she was in pain) and not even Daddy laying down with her could calm her down! It wasn't until we put her in her chair that she finally settled down and went back to sleep! When she woke up this morning, she was still pretty fussy and just had a mad look on her face. She eventually mellowed out and had a decent day. No therapies or anything, but she did go swinging outside for a while. Her brother has been quite the terror today...up crying a lot last night, whining all day long, super needy...I hope it's just teething and going to pass because he's driving me nuts (and I'm pretty sure his sister is thinking the same thing)!!! Hopefully tonight will be a little more uneventful for my girl and she'll pull it together and actually have a good weekend! We could all use some good days!

Thursday, November 22, 2012


Reagan slept like a rock last night (thank you God)!! She woke up this morning tense, but not crying. She did not like having her diaper changed today (or a bath) but other than that, she didn't fuss at all today! It was really the best case scenario we could have hoped for. Yesterday was only her first "bad day" so today could have been SO much worse! She was very serious and a little agitated this morning, but she handled the change of scenery well, letting us hold her and not freaking out with all the noise and commotion of Thanksgiving festivities!! Definitely something to be thankful for. When we came home tonight, I gave her and her brother baths, and then both of them were asleep within the hour! I'm hoping for another good night's sleep tonight for everyone! Thank you for keeping our girl in your prayers! Hope everyone had a great Thanksgiving!
(We're also thankful the Texans won!!!)

Wednesday, November 21, 2012

Bad days are back

Today has not been a good day for my girl. Despite sleeping the whole night through last night (of course...we had a nurse), she woke up this morning crying and spent most of her awake time today doing the same. Thankfully, she slept a lot. I'm not sure if it was the medicine (we tried the whole arsenal...clonidine, Lortab, Ibuprofen) or if it was just her body needing sleep. No therapies today but there were a few more labs her doctor wanted us to get on a "bad day", so we reluctantly loaded her up in the car and took her in for a blood draw. She cried the whole time and fought hard, but we managed to get it done and once home she fell back to sleep. When awake, she was a tiger. I was wiping her mouth with a wet washcloth and she tried to bite me! I managed to pull my finger out just in time...the washcloth wasn't so lucky!! I was forced to put her arm restraint on, as her poor little arm is still healing from last week! I'm still not sure what to expect tomorrow. I'm hoping she'll be out of the crying phase and able to at least tolerate Thanksgiving! We're going to Mike's sister's house and if Reagan is still irate, we may just have to eat and leave! Please keep our girl in your prayers! She deserves a happy Thanksgiving!!!

**I forgot to mention...we now officially have a crawler!!! He's been working on it for a while now, but today he took off (and headed straight for the electrical outlet)!! Boy are we in trouble!**

Tuesday, November 20, 2012

Freak out

Last night (right before bed) Reagan started freaking out! Yelling like crazy, all tensed up and was hard to tell if it was some sort of pain or if it was something neurological. You know those movies where they show the people in the instituions yelling out constantly...that's what it was like. I don't know if we've ever seen her do something quite like this (at least not to this extent). She eventually calmed down and Mike was able to lay in bed with her and get her to sleep. She didn't sleep well though and she woke a couple more times, so it was a rough night for everyone (although it was Ryan's first good night's sleep in a while...8pm-4am). Reagan woke again around 5 or 6 and was quiet for the most part, just awake and kicking around. Today she has been similar to yesterday, only maybe a little more on edge/stressed. Maybe slightly less agitated by the television or music...but more agitated with interaction (although she did make it through OT & PT without any meltdowns). No more nausea today, so that's good. After switching over to the pedialyte last night she's been good. Not sure if that's what helped or if it would have gone away anyway? She was back to half strength formula this afternoon and tonight I'll go back to full strength. Her temperature is all out of whack! Her hands and feet are still very cold and clammy and her body is burning hot (so much so she's sweating through her shirt). Tonight she was in her chair and her face was bright red and she was all sweaty. I told Mike to pick her up to help her cool down...big mistake! She started up with the craziness and then wouldn't stop crying/yelling for a while. She finally calmed down when he put her back in her chair! You can't win with her! I'm not sure where she's going with all of this, but it's not really looking good for Thanksgiving. If she's going to have a rotten day, I'd prefer she get it out of the way tomorrow, instead of saving it for Thursday (actually I'd prefer no bad days at all, but I rarely get that wish)!! Please keep her in your prayers!!

Monday, November 19, 2012

Sensitive AND nauseous!

Reagan slept OK last night. I think she slept well until right around 4am when I saw her awake and kicking around. She wasn't fussy though, so we were able to leave her in her bed til 7. (I wish I could say the same for Ryan!) She continued to be sensitive today, so we had to be careful around her (she was not appreciatitve of the yard guys trimming the bushes outside her window)! She had OT this morning and vision therapy this afternoon and she did well for both! Her vision therapist actually said it was her best session yet!!! She's had several really big throw ups today. She's not gagging and retching nonstop (like she does sometimes), but when she throws up, it's a lot and it really wipes her out. I've also drained quite a bit of fluid out of her g-tube as well! Definitely switching over to pedialyte tonight! Then tonight I was about to give her a bath and I noticed her tummy looked bloated. I "checked" to see if she was stopped up, and she let out a ton of gas and another liquidy poop! Poor girl! That had to be hurting her! I still have no clue where this is headed and how our Thanksgiving is going to turn out! Please say some extra prayers for our girl!!!

Sunday, November 18, 2012

Too sensitive

Reagan slept pretty well last night. She did randomly wake up crying at one point, but Mike was able to get her calmed down and back to sleep. Her brother, has been quite another story! He has not been sleeping well at all lately. Waking up at least 4 times a night crying...I'm exhausted! I don't know if his teeth are still bothering him, if maybe he has more coming, or if he's got an ear infection or something else's not good, whatever it is!! Reagan was good today for the most part. She's been smiley and cuddly, but she's also been super sensitive! She has had a few crying meltdowns...she wasn't a fan of us talking (or yelling at the football game on TV) and she also had two liquidy diapers that were probably hurting her poor thing, she's been a little weepy. I'm hoping this is just a short phase...a the middle of her good days. Hopefully we aren't headed back in the wrong direction again! Her hands and feet have been cold and clammy at times today, but that happens on good days now as well. Please keep it in your prayers that she can hold out and have good days this week...especially for Thanksgiving! I'm not sure what we'll do if she's not having a good day. These were my favorites from the photo shoot!

Saturday, November 17, 2012

Happy girl

Reagan slept pretty well last night. She fell asleep without her clonidine and then slept through til 5am, when she woke and was wide awake! I gave her a half a dose of clonidine and she fell back to sleep and slept til 8:30 or so. She's been super sweet and smiley today. She was vocal at times and constantly chewing on her hand or playing with her hair! Poor hand! It's just covered in scabs from all the biting she did last week! She has four different bite marks on her wrist/hand and then another on her pointer finger! Poor thing! There were a couple of times today when a loud toy (or loud brother) seemed to overstimulate her and you could tell she was getting upset, but she held it together and was a good girl all day!! I took her for a walk and we got in some good snuggling today among all the football! Hoping to see more of this happy girl all week!

Friday, November 16, 2012

Smiling once again!

Reagan slept all night last night and woke up at 6:30am SMILING!!! She's been a good girl today! Very smiley, much more calm, and just overall happy! So good to finally see her back to her happy self! She only had one therapy today, PT first thing in the morning. She did great for it and then spent the rest of the day just hanging out. She was a little groggy off and on, but she was awake and alert for the majority of the day. The red patch that had appeared on Wed afternoon is already completely gone! I did put some coconut oil on it immediately after we saw it, then she slept all day yesterday, and  now today it looks no complaints! (I didn't even have a chance to use the new prescription the dermatologist gave us!) Tonight Reagan dozed off in my arms smiling! Such a sweetie! Looking forward to a great weekend with my girl!

Thursday, November 15, 2012

Finally sleep!

Reagan was awake all night last night. Thankfully her night nurse was here. She'd doze off in her arms and then startle back awake, thrashing around like crazy! She was very tense, but at least she wasn't nauseous anymore. She finally fell asleep at 6am and then proceeded to sleep the majority of the day (in her chair)! Finally at 2pm we took her out of her chair and changed her diaper...she stayed asleep. Then around 4:30pm she started rolling and thrashing around. She was smiling, but still acting a little crazy. She was making a lot of vocalizations and then we noticed she was on the verge of tears. I think she was having tummy pains. Eventually she got over it and was OK again. Then around 7:30pm, she dozed back off. Right now she's in her bed, making sucking noises with her tongue (so cute)!! I really hope she wakes up tomorrow and is FINALLY back to her happy self! This has been a loooong bad streak! I'm ready for some good days!!

Wednesday, November 14, 2012

No sleep and nauseous

Not a lot of time to's been a busy day! Today is my birthday. My mom and my sister "flocked" me (see picture below)! That definitely made me smile! What didn't make me smile was the night and day that my girl had! Reagan was up almost all night last night. Flailing and kicking around, rubbing at her face (even with the restraint on...hence the red nose today). She fell asleep a few times when Mike was restraining her, but it was short lived and the second he would move, she would wake up. So no one got much sleep last night. Then to top it all off...she's been super nauseous today (and still tense and flailing). It started first thing this morning. We had just changed her out of her pajamas (that were sweated wet) and she had a HUGE throw up that got all over her entire new outfit we had just put her in! She's been overall very nauseous all day, lots of gagging and retching, and she's had several more big throw ups. I hooked her up to a drain a few times today and drained out lots of yellow bile. Tonight she's switching over to Pedialyte. I'm hoping and praying that she finally gets some much needed rest tonight and wakes up happy with no nausea! Please continue keep her in your prayers!

Tuesday, November 13, 2012


So, Reagan didn't have that great of a night last night. She fell asleep on her own and Mike was able to get her to bed, but she woke fussing just as we were about to go to bed at midnight. I gave her a dose of clonidine and he eventually got her settled down and she went back to sleep. She woke again at 5am and was flailing around and fussing so we went ahead and put her back in her chair and I gave her some Lortab and she went back to sleep. She woke again at 7am (I think the beeping coffee pot woke her up) and she was still flailing a lot but not fussing. I noticed in addition to the big bruise around her left thumb, she now had a scratch (bite?) at her wrist and another about 2-3in above her wrist. We haven't had her arm restraints on her because she hasn't been bitey and she also hasn't really been fussy in several days so it seems odd that she would be biting all of a sudden! Then this morning her OT came and worked with her. We talked to her about possible solutions for her need for chewing (like a chewlery necklace)...because even on good days she's got her left fingers in her mouth or hair and her right hand grabbing her shirt! After she left Reagan was on the floor just kicking around in front of the tv and I was sitting beside her with Ryan. All of a sudden she started fussing a little and I look down and she's got a bandaid in her mouth (that I had put over the other scratch/bite)!!! So I looked down at her arm and there was a huge bite! Ugh. What are we going to do with this girl! There was no warning whatsoever...she didn't fuss until she had already bitten herself! I really think it's just her way of dealing with pain. She's having some sort of pain and the only thing she can do is BITE! It certainly doesn't make matters's just what she does! She's also crunching in half a lot (making her tube leak)...I wouldn't be surprised if it wasn't some sort of stomach pain! Poor thing. And the chorea is crazy! Lots of kicking and flailing...again, I think because of the pain. Poor girl. I'm so ready for this bad streak to be over!!!! Praying she'll get a good night's sleep tonight and wake up much happier tomorrow!


Monday, November 12, 2012

Still off

Reagan slept fairly well last night (even though she was still in her chair). She did wake up and flail around every now and then. She's been better today than she was yesterday. No fussing at all, but still very serious. No hint of a smile. Very cold, clammy hands and feet. We noticed today a big bruise on her left hand right around her thumb. I guess she bit it? LOTS of chorea. Legs kicking nonstop. This isn't necessarily a bad thing. I know it's a lot of movement but it's almost like her own form of exercise. I remember a very compelling study that illustrated the importance of exercise in mitochondrial disease. There was a picture of these mice, mice that had been genetically altered to have mitochondrial disease. Half of them were put in a cage without a wheel, so they were unable to exercise, the other half had a wheel and would get on it and run around each day. The difference between these two cages of mice was staggering. The mice that exercised looked completely normal and healthy...the mice that didn't exercise were missing tufts of hair and they very weak and feeble, they would even fall over when they tried to walk! So, maybe these annoying seemingly unpurposeful movements (chorea) that plague Reagan, do in fact serve a purpose for her?!?! I'd like to think that's the case. Despite still being off today, she did make it through both vision and speech this morning without any problems. Then we headed into the med center for a dermatology appt about the recurring red patch she keeps getting on her bottom. Of course she doesn't have it right now, but we made the appt weeks ago and I've got pics of it, so we went. Not a lot of information. Dermatitis. Sure I could have guessed that. We got a prescription for something to try next time we see it. Reagan was pretty mellow the rest of the day (other than her legs kicking and arms flailing around her face and pulling her hair), that is until tonight. She fell asleep on her own and went to bed without a problem, then just as we were getting ready to go to bed at midnight, she started flailing around in bed and freaking out. Hopefully we can get her to settle down and go back to sleep! Thank you for your continued prayers for our girl!

Sunday, November 11, 2012

Still fussy but not crying

Reagan and Ryan slept surprisingly well last night. Reagan fell asleep on her own but then right around 1am woke crying. We gave her some clonidine and she fell back to sleep. I don't remember her waking up at all, maybe the occasional fuss, but I'm pretty sure she never actually woke back up til morning. Ryan was also amazing in the sleep department last night. He slept from 8pm-6am! Now when I say "slept", I mean he never fussed and I never had to get up and nurse him...but I'm not sure that he actually sleeps the whole time!! I've seen him wake up before, play, and then fall back to sleep on his own! That's actually what he was doing when I saw him at 6...he was awake and talking in his crib! The only reason I picked him up is because he hadn't eaten all night and I didn't want him to start fussing and wake up his sister! Reagan was still very cranky when she woke up. Not really crying, but fussing a lot and SO tense. She particularly hated us getting anywhere near her! When I would go to give her her medicine, she would immediately start up, but she was fine as long as we kept our distance! This afternoon she had probably the biggest blowout diaper I think she's ever had! Mike heard it coming so we picked her up immediately, but it was already bubbling out! It was everywhere!! We wiped her down and then just took her straight to the tub! Afterward she seemed to settle down a bit and then got a little sleepy. She woke up fussing just as we were about to leave for our anniversary dinner (today is our 12th wedding anniversary), I gave her a dose of Lortab and she relaxed and fell back to sleep. When she wakes up she's flailing a lot and frantically wiping at her face. We've managed to avoid using the arm restraint this go round, she was still putting her hands in her mouth a lot (and chewing on her thumb), but she never bit herself (sometimes it seems the restraints just make her even crazier). We came home from dinner to find both kiddos asleep! I'm about ready to do the same! Thank you for your continued prayers for our sweet girl!

Saturday, November 10, 2012

Bad day

Reagan has had a horrible day. She slept well but woke up on edge and about 30min later had her first meltdown! It's been rough. She was crying more than not and not sleeping as much as we'd hope. Medications didn't even make a dent today (Lortab and Ibuprofen did nothing and Clonidine only worked for an hour or so). Poor girl. She's spent most of the day in her chair. When you hold her she fights you nonstop and is so tense and rigid, you can barely hang onto her! My mom is actually looking into getting her a foam bean bag chair...a giant one that she can kick around on and even sleep on! I'm interested to see how that works out, because she just gets so hot in her chair and I'm afraid she puts too much pressure on that one area of her bottom. Maybe this will work well for her. Right now she's laying in her chair asleep. There's no chance of moving her (we've already tried), so we're just going to hook up the video camera on her and hope she sleeps through the night and wakes feeling much improved tomorrow. Please keep our girl in your prayers!!

Friday, November 9, 2012

Tense but hanging in there

Reagan slept fairly well last night. I was up multiple times with Ryan and she seemed to be asleep most of those times. At 5:30am however, she was awake and I don't think she ever went back to sleep. She was quiet until right around 7am when she started crying. Mike went in and was able to calm her down...she was awake but quiet. Then at 7:40am just before Mike left, she started crying again, but this time he was not only able to calm her down, but she went back to sleep! She slept til right around 8:40am when Ryan woke her up with his happy screaming! She woke fussy, but she calmed easily and then actually was calm most of the day! She's been on edge, hands and feet ice cold and clammy, lots of chorea, but calm and even smiling a little. We even took her outside on the swing for a while. She's still very tense...tonight she freaked out because of an iPad mini commercial (piano music). I've noticed in the past that she doesn't seem to like the piano, but this confirmed it! I'm not sure if it's only when she's on edge or all the time?!?! I have no clue where we're headed, but it sure would be nice to skip the bad days this go round! I would LOVE for her to be able to go to this birthday party on Sunday (for her speech therapist's daughter) at Build-a-bear! Please continue to keep her in your prayers!!!