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!!