Sunday, September 30, 2012

Slowly getting there

Reagan finally slept last night (in her bed no less)!!! Mike said he checked on her at 6am and she was still asleep, but she was quiet and awake when I got up around 8. She's been slightly better today. Not as on edge, but still not really wanting to be messed with. We have gotten a couple laughs out of her today, well, Grandma did anyway. She's still got super clammy hands and feet and a hot sweaty body/back (not as much chorea this time and slightly gaggy).  She was able to go all day without her arm restraints, so that's a step in the right direction. Tonight she took a nice bath and then dozed off on Daddy's chest. I'm hoping she'll be feeling much better by tomorrow and actually get a chance to enjoy her Grandma before she has to head back! Thank you for keeping our sweet girl in your prayers!!

Saturday, September 29, 2012

Less fussy, still miserable

Reagan was up most of the night last night. Crying, restless and kicking around nonstop...poor girl couldn't catch a break. Today she's been less fussy. She just wants to be left alone. She doesn't want to be held, she really doesn't want her diaper changed...just leave her in her chair and she's good. We've experimented in taking her arm restraints off a couple of times but she's just too easily aggravated to leave them both off right now. Her hands and feet are cold and super clammy and her body gets so sweaty (and sitting in her chair certainly isn't helping). Tonight she was getting a little gaggy. I tried draining her tummy and got nothing...but the nausea is certainly there and her lips are getting dry from the acid coming up. Please keep it in your prayers that she turns a corner soon! I was really hoping Grandma would get to see her happy this weekend, but so far it's not looking good. Lots of prayers for the girl!

Friday, September 28, 2012

Miserable girl, miserable day

It's been a horrible day for my girl. It all started last night, when she woke at 2am crying. Mike got up with her but she wouldn't stop. So around 2:30am I gave her a dose of Lortab, she fell back to sleep and woke at 8am crying again. It's been a miserable day. We managed to get her calm this morning. She even had a good session of PT...but just as PT was wrapping up, I saw her face in the mirror and knew. She started crying and that was IT! She cried the rest of the day and night! Poor girl. And nothing was helping. Lortab, clonidine, ibuprofen...NOTHING. The Lortab helped her for 30-40min and then she was back awake and crying. Poor thing.I got nothing accomplished today. And what makes matters worse, her brother was refusing to take naps all day. I don't know if Reagan crying was stressing him out or what. It was a rough day for everyone. But my poor princess suffered the most! The only thing she seemed to like, was me picking her up and holding her (while standing). I can only do this for a few minutes at a time, but tonight it really did the trick and it was what finally got my sweet girl to doze off. Makes my heart melt! I love this girl too much!!! Please keep it in your prayers that she is feeling better by tomorrow (and gets some sleep tonight)!!!

Thursday, September 27, 2012


Reagan was a little tricky in the sleep department last night. She woke up around 2ish and Mike went in and was able to get her back to sleep. She woke up again at 4, but this time she wasn't going back to sleep! She laid in bed rolling around and talking to herself til 7:30...but when I went to get her, she was all is good! She's been a sweet girl again today. Lots of therapies...speech, school, and then PT (and the stander). She made it through everything, no problem. She's been a good girl today. Hopefully she'll sleep tonight, but she's fighting it right now. I've actually been trying to figure out how we can set up a schedule for her days. What the nurses should be doing with her between therapies. We've had such a hard time finding steady nursing... I feel the need to lay it all out for them because no one really seems to know what they're supposed to be doing. This is going to be a complicated process for me. Though I love structure and organization, I'm not good at implementing it (you should see her therapy room right now)! I tend to get overwhelmed and then just shut down...but this HAS to be done and I'm determined to have a schedule set up by next week. Hold me to those words. I think it will be better for Reagan, better for the nurses, and better for me. I need order!!!!!!!!!!! (Heather...where are you when I need you?!?!) Prayers that Reagan can hold it together and stay good for Grandma this weekend!!

Wednesday, September 26, 2012

Sweet girl

Reagan made it til 4am in her bed and then she woke up and the nurse picked her up. She fell back asleep til 6am and then was up for good! She's been a sweet, smiley girl all day today. This is definitely her best day yet. She's been less on edge...more happy. Maybe she knows that Grandma is coming this weekend! It was another three therapy day. Today it was speech (private), then speech (through the school system), then school! Reagan did great with everything. We're still dealing with the liquidy diapers. Just one today (and one yesterday)...but for her that's a lot and she hasn't taken laxatives in forever! The GI doc said if this continues we'll need to have it tested for C.Diff. Hopefully it just goes away and we don't have to worry about it anymore. I know Reagan's tummy would appreciate it. Thank you for checking in on our's to more good days!

Tuesday, September 25, 2012

Slightly on edge but still good

I was going to post that Reagan slept fairly well last night but the more I think about it...she may have been awake at 2am and then never went back to bed! That's how delirious I am at night now...I can't even remember what time it was that I first saw she was awake!!! I know for sure that she was awake by 6, but I may have seen her first moving around at 2am when Ryan woke me up. She's been in another spunky, squealy mood today. Yes, at first look she appears to be happy, but at the same time you have to be careful not to send her over the edge (the nurse shaking a tambourine or me talking to Mike over the cell phone just about drove her to tears). She had OT and the PT this afternoon and then we headed into the medical center for a follow up appt with GI. I was nervous about our drive in because Ryan had just woken up (and obviously wasn't going to sleep in the car) and I knew Reagan was on edge. Then just as we were leaving the neighborhood Reagan started to freak...she was just about in tears. So I turned the car around and came back to the house to grab some Lortab (just in case). Then we headed into town and Reagan ended up falling asleep and Ryan was a perfect angel, staring out the window the whole time. The appt took a while just going over her most recent issues, but at least we didn't sit in the room for 2hrs this time. There is some sort of halt in production of the Nexium packets she takes. I'm not sure how long this is going to last, but it's already been going on for a couple of months (we just happened to find a pharmacy that still had some). We already tried switching her over to Prevacid, but she threw up every single day she was on it, so obviously Prevacid is just not going to cut it. We have to come up with other options but for now we have about a months worth left and we're hoping they'll start making it ASAP! We also discussed increasing Reagan's formula intake. She's been right at 40lbs for a while now and she's kinda on the low side of what she should be getting. I'm still not exactly sure what we're supposed to increase it to, so I think I'm going to follow up with his office tomorrow to see if we could talk to a nutritionist. While there, I also gave the doctor the cell number of Reagan's palliative care doctor and he's going to talk with him about what tests have already been run and what tests might be worth doing in regards to sorting out her bad days. Like I said, lots to talk about. When we finally got out of there I had to rush home to get the nurse back (her shift ends at 6...we didn't get back til 6:10...oops)! Thankfully, Reagan behaved herself and Ryan slept the whole way home! Reagan still is a little spunky, but hopefully she'll get some sleep tonight...if not, the night nurse is here and will be happy to pick her up!

Monday, September 24, 2012

Long nap, spunky girl

Sorry...I'm a little late on this post. Not too much to report. Reagan slept a little better last night and woke up this morning kicking and smiling. Her diaper rash is finally clearing up and is almost gone (although she did have one liquidy diaper tonight), but now she's starting to sound congested (hopefully it's nothing but allergies). She's still very vocal and sounding like she could easily go over the edge...but so far, so good. She had speech this morning followed by vision/OT. She did well for all of them and then fell asleep shortly thereafter. She kept sleeping (and missed OT) and slept til right around 6:30pm (I think that was 6hrs...not sure what that's all about)!! She woke up spunky and was wide awake the rest of the night. She started settling down right around 11pm and the clonidine helped her fall asleep for good. Hoping she gets some sleep tonight after that long nap today!!

Sunday, September 23, 2012

About the same

Reagan woke up around 2am and was wide awake again. Finally around 2:30am, I decided to try giving her Lortab to see if it would help her sleep. It did! She fell asleep and slept through til around 7:30am this morning. Her day today has been about the same as yesterday. She's still making a lot of crazy sort of noises (hard to tell if they're happy or on edge) and still very rolly and constantly chewing on her hand. Her bottom is finally starting to look better. It's still red, but not the bright, angry red it was yesterday and the day before. Hopefully we're done with all of that and she's ready to have a good week this week! Right now she's laying on the floor with her arm covering her eyes...looks like it's time for bed! Praying my girl can finally get a good night's sleep tonight!

Saturday, September 22, 2012

Not 100% but getting there

It's been kind of a weird day for Reagan. She slept last night, but I don't think she slept very well. She woke us up at 6am and she was WIDE awake, so no telling how long she had been up. She spent a good portion of the morning just watching her DVD player and kicking around on the floor. Around 11am or so, she dozed off and slept for several hours. She woke up and has been wide awake the rest of the day (it's 11:40pm as I type and she's still awake)! No more liquidy diapers today (thank God) but her bottom is still painfully red. We've been trying to let it air dry and just keep an antibiotic cream on it today...but it doesn't seem to be getting any better. As I said before, she's been a happy girl today, but still just a little off. She's a little tense and has periodically made sounds that are consistent with her being on the verge of freaking out (although she never did, thank goodness). She didn't like me raising my voice to the pharmacy people on the phone and she sure didn't like her brother fussing/crying. So she's still not 100%, but she's definitely closer to normal. Please keep it in your prayers that she fully recovers and gives us a nice long stretch of good days and that her poor bottom heals up ASAP!!

Friday, September 21, 2012

Little better

Reagan didn't sleep much again last night. Off and on, off and on. She does, however, seem to be feeling a little better today. She still had two really liquidy poops this morning (and her bottom is still really red), but she's given us some laughs and smiles today which is something we haven't seen in days! She had a busy morning of therapy with PT, OT, and speech all back to back to back. She did well with it all and we took it easy this afternoon. I gave her a little of her brother's yo baby yogurt, which she seemed to enjoy. I didn't give her much, because it's been a while since she's eaten anything and she's also been a little spitty/chokey today. This afternoon we attempted a walk, but her brother made such a scene, we had to turn around and come back home! Ryan has been really fussy today. Super high maintenance, very whiney. Not sure if something is bothering him or what. I'm hoping for a good night's sleep for everyone tonight and a great weekend with my girl!! As we are nearing the end of mitochondrial awareness week, I wanted to post a link to an article written by fellow mito mom from Houston. Please do your part to raise awareness (which can be as simple as just wearing a mito t-shirt)...our children's lives depend on it!

Thursday, September 20, 2012

Poop talk

Reagan didn't sleep too well last night. Thankfully the night nurse was here to snuggle with her. She's been about the same as yesterday. Very smiles. Pretty tense, lots of chorea, three more liquidy diapers. Yep, that's right. I spoke to her doctor and she thinks she's got a little stomach bug. Hopefully she'll be over it by tomorrow. She's also got another big red spot on her bottom (we saw it yesterday afternoon). The doctor thinks it's from the poopy diapers but it looks eerily similar to the spot she had a couple of weeks ago (which she thought was cellulitis). I'm hoping it clears up and goes away along with the liquidy diapers! Sorry for all the poop talk! In other news, my big girl lost another tooth today!! The bottom left lateral incisor. This is her third tooth to lose! (Mike said she's got another three that are loose.) She was in her wheelchair after school and I saw something white on her strap. I thought it was a fuzzy, but it was her tooth!! I think the pulled it out when she was putting her fingers in her mouth! I'm just glad she didn't swallow it. Hoping my girl is feeling better by tomorrow and that she gets some sleep tonight!

Wednesday, September 19, 2012

On the mend

Reagan had a better night last night. She did wake up and get a little restless this morning, but so did her brother! She's been very serious today. No smiles whatsoever, but no crying either. She's had several big blow out diapers and she did get a little agitated while waiting for us to clean her up...but other than that, she seems much better. We were able to finally take her arm restraints off, so that's good. Baby steps. I'm just relieved to see her feeling better. She did have a big throw up that seemed to come out of no where and then she got very sleepy. I think the nausea really takes a lot out of her. She woke up just in time for speech and she just played with the ipad and took it easy. This afternoon she had vision therapy...again, just taking it easy. We don't want to push it. She seems to be on the mend, so no need to push our luck with her. We have our night nurse tonight and tomorrow night, so she'll definitely be well taken care of. She fell asleep early tonight, so hopefully she gets some good rest. Please continue to keep our girl in your prayers!!

Tuesday, September 18, 2012

The bad days are back

It has been a bad day for my girl. She woke up around 4am this morning crying and she continued to cry the entire day as well. When she was awake...she was crying/fussing/moaning. She was getting very hot in her chair this morning (sweaty back but cold hands/feet), so we tried to keep her out of it most of the day. I canceled her therapies and we alternated Ibuprofen and Lortab all day hoping to keep her calm. She was never calm (and we had to keep both arm restraints on her all day), but she did take some decent naps so I guess that's the best we could hope for. When the nurse left for the day she put Reagan in her chair and brought her out to me and she hasn't cried since. She certainly didn't want to be messed with (even giving her meds seemed to irritate her)...but she was quieter than she's been all day. Tonight she fell asleep around 9pm. I just hope and pray she can sleep tonight (no night nurse til tomorrow). I hate that she has to go through this. She's obviously in pain, but there's nothing we can do for her. The pain medications don't seem to help. But that's mitochondrial disease. We HAVE to find a cure! Our sweet girl's life depends on it...

Monday, September 17, 2012

Mitochondrdial Awareness Week

Reagan slept fairly well again last night. She was awake around 5am, but she went back to sleep and slept til 8am. She woke up a little startled. Big eyes, no smiles. She cheered up though and was smiling for Daddy after a little while. She was good all morning. We went and had breakfast at Kerby Lane before leaving Austin. I love this place! Ryan was a turkey and fussed nearly the whole time. My dad was feeding him pancakes (his first bit of solid food) and Mike was letting him drink water out of his cup, just to try to calm him down. He is certainly a handful. He was tired when we loaded up into the car, but he resisted sleep and fussed and cried for a while until finally falling asleep! He slept for two hours or so on our drive back (the longest he's ever slept in a car). Reagan was a little spitty and kept coughing here and there, but thankfully she didn't wake him up. Unfortunately, Ryan woke crying again and nothing (including a lollipop) would calm him down. I kept telling Mike to pull over, but we were in the middle of no where so we kept driving. Eventually he settled back down (he kept giving me these awful looks) and then he fell back to sleep and slept the rest of the way home! Reagan was a doll the whole time and didn't fuss a bit until this afternoon. Ryan was fussing and then I got a call from the nursing agency...well, she did NOT like me talking on the phone! She was just about in tears! Not good. Not good at all. You can just tell she's tense. I'm not sure where this is heading, but I am sure glad we avoided this all weekend (especially considering how she was on Friday when we left)! Please keep her in your prayers and hopefully we'll continue on with this good streak! Lots of therapy and school to catch up on!

By the way...just wanted to let everyone know that this week is Mitochondrial Disease Awareness Week!

Just a few facts...
Every 15min a child is born who will develop mito by the age of 10. 
More children die from mitochondrial disease than childhood cancer!
Mito is not as rare as most people think!!

Please consider taking a moment and going to Chase Community Giving and vote for the United Mitochondrial Disease Foundation and help them raise some much needed money for mitochondrial disease research! (it's super fast and easy to do)

All week long California Pizza Kitchen is donating 20% of your bill to Mito Action if you bring this flyer in with you!

Below are some pics from the Central Texas Energy for Life Walkathon this weekend!

Sunday, September 16, 2012

Rainy day

Reagan slept well last night. She was a little less restless and she and her brother both woke up early around 7am. Mike tried to play golf with my dad but they got rained out and came back after about half a round! We spent most of the day lazing around the house (as it poured outside). We went to brunch and then came back and Ryan and I took a nice long nap! Reagan never took a nap, but she was super sweet and smiley all day! We really lucked out this weekend! On our way to Austin, things were looking grim, but Reagan really turned it around and had a great couple of days!! (Definitely an answer to prayers!) Tonight my dad and stepmom watched Reagan and Ryan so Mike and I could go out to dinner alone. We went to Kerby favorite place in Austin! They have great breakfast 24/7, but we opted for the dinner menu (after vowing to come back tomorrow morning for breakfast)! Reagan and Ryan were great while we were gone and we got back just in time for Mike to watch some more football (and see how his fantasy football league was doing). Tomorrow we head back home! Hoping for a smooth ride back and a sleepy baby!

Saturday, September 15, 2012

2nd Energy for Life Walkathon...Done!!

Reagan slept fairly well last night. She has a pallet on the floor beside Mike's bed (Ryan and I are in our own bed). Mike said Reagan rolled around a lot kicking her covers off but staying asleep. It's crazy how much cooler it is here! No humidity and lower's WONDERFUL! They've been getting a lot of rain the last few days, but the weather turned out to be perfect for the walk (although we did have to park in a muddy field)! Reagan and Ryan were both great for the walk! My dad and my stepmother and my stepsister and her youngest daughter who all live in Austin were there, as well as my mom and my sister and her boyfriend who drove in from Dallas!! So team Rallying for Reagan was well represented! We had a great time and even met a nice family that reads Reagan's blog! Afterwards we went and ate lunch and a couple came up to us and said how great they thought it was that we were all together "rallying for Reagan"!! (they had even googled the UMDF after seeing our shirts) See how easy it is to raise awareness!! After the walk we went back to my dads house and just hung out for a while, before heading over to my stepsister's house for dinner. Reagan was good all day but Ryan (who is refusing to take naps because we didn't bring his swing) has been hit or miss. Lots of fussing and whining. Pitched a huge fit on our way home from my stepsister's house (gagging and choking and all kinds of nonsense) and almost upset his sister! He'll definitely crash tonight (as long as I'm laying right beside him)! 
(I'll have to post pictures later...still can't figure out how to do it on my iPhone!)

Friday, September 14, 2012

Are we there yet?

We made it! It was BEYOND stressful, but we're finally here in Austin! Reagan slept well last night and woke up this morning making noises, but still a little on edge. She had OT at 8:30am and then PT at 9:30am. It's a new OT and Ryan started crying the second she got there, so I had to just turn her loose with Reagan! She did great for PT but was starting to get agitated towards the end, so she ended a few minutes early (on a high note). Reagan got progressively more tense and aggravated as the morning went on and I had to give her a dose of clonidine before we even got into the car! It did knock her out, so at least we started off with everyone sleeping. Ryan woke up only 30min or so into the trip and then I had to entertain him nonstop! Mike found a dum dum in my cup holder (that the bank had given me) and that turned out to be a lifesaver! Ryan sucked on that off and on for the rest of the trip (of course it was blue raspberry so he had blue lips)! Reagan woke back up and started crying so I broke out the Lortab which got her through the rest of the trip! Mike missed our exit and we went a good 30min out of the way! Finally we made it and Reagan woke up when we took her out of the car...she was a little groggy but not crying so that's good. She's continued to be on edge but she's holding it together. Please pray that she cooperates tomorrow for the walkathon (and that the weather cooperates as's been raining a lot here)! Hopefully we all can get some sleep tonight!!

Thursday, September 13, 2012

Happy squealy girl

Reagan slept most of the night last night (after sleeping all day yesterday) and then woke this morning all smiles and talking to herself! I got up with her and her brother around 7am. Reagan was happy and smiley all day. She did let out some questionable squeals here and there (mostly in the morning or when I tried to blowdry her hair), but she never went over the edge and managed to stay happy. She's sounded a little congested (nasally), so I gave her some saline and it seems to have helped break it up (although she's still not a fan). I've spent most of the day trying to organize and make sure I don't forget anything for our trip (and getting a new cell phone). Good thing we didn't leave tonight, because I'm still not ready. Hopefully we all get a good night's sleep and everyone behaves themselves for the drive tomorrow (and the whole weekend)!! Please keep us in your prayers!!

Wednesday, September 12, 2012

Sleepy sleepy

Reagan has had a sleepy day today. I guess I should have seen it coming, the way she zonked out last night after the clonidine. But she woke up with such spunk this morning, I thought it was going to be a normal good day! She slept the whole night last night and then woke up this morning smiling from ear to ear with lots of energy. Super sweet, very rolly, happy to finally have her arm out of the restraint so that she could chew on her hand! We decided to go for a walk around 10am. It was bright sunshine outside (but still in the 80s thanks to a cool front...although the humidity was still high). Reagan and Ryan were both wide awake at the beginning and at least halfway through, but Reagan was out cold by the time we got home (usually it's Ryan that falls asleep on walks)! We laid her down in her therapy room where she proceeded to sleep the rest of the day...and night! I finally moved her into bed at 11pm. I guess my girl just needed to catch up on her sleep. She did spend a few nights awake and laughing so I guess she wore herself out, poor thing! Right now I'm the only one awake! Mike is snoring it up after an overnight flight and then working all day! Not sure if we'll be leaving tomorrow night or midday Friday for Austin (Mike might have to go in part of the day on Friday)...we'll see. I spent part of the day trying to get things organized for our trip (and making more of a mess than anything). I did a ton of laundry and somehow managed to put my iphone into the wash as well! So...for now I don't have a cell phone. I'm hoping it will dry out and magically work when I put it back together tomorrow!! It might be time for a new iphone!

Tuesday, September 11, 2012

Austin Walkathon

Reagan didn't sleep much last night. She slept some, but I heard quite a bit of laughing throughout the night. She was still laughing at 7:15am when I picked her up out of bed! She's definitely had the crazy laughs today, but she's been sweet. A little gaggy at times (I've drained quite a bit of fluid out of her tummy and she did have one big throw up), but overall it's been a pretty good day. She had school today and did well for that...but no other therapies. Tonight her chorea kicked into high gear and she couldn't sit still for even a second. I gave her some clonidine (thinking maybe it would help calm her down) and it knocked her out! She woke up when I tried to move her but the night nurse rocked her for a little while and she dozed back off. Sweet girl. I hope she gets some sleep tonight. We need the good days to keep coming as we have a very busy weekend! We're going to Austin for the first annual Energy for Life Walkathon- Central Texas! My dad started a team, so it was a good excuse to go to Austin to visit and walk for mitochondrial disease!! It's been a couple years since we've been to Austin, so we're looking forward to it! We're planning to leave Thursday night and come back sometime Monday (our sweet neighbor will come by and take care of our dog for us)! Please keep it in your prayers that Reagan continues to have good days the whole time and that both of them (but especially Ryan) behave themselves in the car!!!

Monday, September 10, 2012

Sweet girl, a little nauseous

Reagan did OK last night. She started waking up right as I was heading to bed, but I laid down with her for a few minutes and she dozed right back off. Of course, her brother started fussing when I laid back much for getting some sleep on my own! I could hear Reagan laughing around 5-5:30am this morning but she was OK, so I waited til 7:30am or so to get her out of bed. When I picked her up, she had a big poopy diaper, so maybe that's what she was laughing about! She's been in a good mood today. Some crazy laughs, but all smiles! She had vision therapy this morning and the OT from the school system came and they did a joint session. Then her speech therapist came at noon and she chomped on some gummy bears and seemed to enjoy that. She's been a little spitty in her throat and a little gaggy this afternoon, so we decided to forgo the food. I did manage to collect some urine this morning (for a test her palliative care dr wanted to run), thanks to a better collection bag than the one we tried on Friday, so I was happy about that. I also managed to get in to a dermatologist appt for myself (while my dad watched Ryan). I've got horrible allergies and eczema which has manifested itself in horrible peeling and cracking of my fingers and about painful. It had to get this bad for me to finally get into the doctor (there's no time for me). This afternoon we took Reagan and Ryan for another walk. Ryan slept most of the time and Reagan laughed and had a good time. She was a little chokey again tonight and then finally (right before bedtime) she had a big, biley throw up! Poor girl! Thankfully I was able to elevate her head in her sleepsafe bed, so hopefully she'll be OK tonight (now if she starts rolling around, we may be in trouble)! Her brother has been a total handful today...temper tantrums, gagging and choking himself...he's seriously driving me crazy! Hopefully he sleeps off his craziness tonight!

Sunday, September 9, 2012

On the mend

Reagan slept pretty well last night. She woke early though, so I got up with her around 6:30am. Her brother was up by 7! Daddy left for the airport around 8:30am and Grandpa was here by 9:30! Busy morning! Reagan seems to be feeling better. She's still a little stressed and is a lot more calm when she's in her chair (compared to on the floor)...but she's not fussing or crying and she seems a little more content. Her hand is healing up. Thankfully, it doesn't look swollen or infected, so I think we were lucky. She's had moments of crazy laughing, but in general, she's been pretty calm. We went for a walk this afternoon with Grandpa and every now and then she'd laugh (a happy sort of laugh, not a crazy laugh). I think she enjoyed her time outside! Tonight she started getting sleepy, but her crazy brother kept fussing and keeping her awake. I finally got brother to bed (with the help of some melatonin...yes, his pediatrician said to try it) and then I was able to finish up her meds and get her off to sleep. I'm hoping for a quiet night tonight and a great day for my girl tomorrow!

Saturday, September 8, 2012


Reagan slept pretty well last night (I think). She woke up this morning very serious but OK. Similar to yesterday, she preferred her chair and to be left alone. Each time I would change her diaper, she would get upset and start fussing. The third time I changed her diaper...was not the charm! I looked down and saw blood on her mouth! She bit her thumb (she probably would have bit it off, had it not been for the bone)! There are teeth marks on both sides of her left thumb. Ugh. She wasn't even putting her hands in her mouth today, so I never even thought about the chance of her biting herself. Needless to say, we put an arm restraint on her and she wore it the rest of the day! She's been very serious all day, but other than not liking her diapers changed (which of course she had a ton of today), she's been good. She had two huge liquidy diapers today...boy I'll be glad to get her off these antibiotics! Tonight she seemed to be getting a little more aggravated and the chorea picked up a little...but she was also getting nauseous as well. She started getting sleepy around 8pm and we put her in bed around 8:30 (very early for her...she did wake back up an hour or so later but went right back to sleep). I'm praying she sleeps well tonight and wakes without any nausea or irritability tomorrow! Daddy's going out of town on business and grandpa is coming to stay with us, so we need some easy days!!

Friday, September 7, 2012

Mildly bad day

Reagan slept last night from about 11pm-5:30am. Her night nurse was here, so she picked her up and held her the rest of the time. No smiles, but she was content. Then this morning we had a fill in nurse here. I could tell that Reagan wasn't thrilled. She was thrashing around a lot, didn't want to be held, didn't want to lay on the floor. The crying set in around 9:30am...this was going to be a bad day! She cried for a while. I gave her Lortab and about 30min later, she fell asleep. Mike and I had eye appts to go to so we left and hoped for the best (we were only 5min or so away). She slept for about an hour and then woke crying again, but eventually fell back to sleep and was still asleep when we got home. I think I woke her when I had to change out her formula...then the crying started again. I tried some Ibuprofen...nothing. Then I gave her some clonidine. She didn't fall back to sleep, but she did calm down. We put her in her chair (the brown special tomato chair) and she seemed content to just sit there unbothered. That didn't happen though because I remembered that her palliative care doctor had wanted us to get labs done on a bad day. So I bagged her for urine and then we waited. Of course she didn't go when we had her in a good position. Eventually we just had to go to the lab because they were about to close for the day (and that's when she decided to go and it leaked right out of the bag and into her diaper). So no urine. She was surprisingly content in the car and the doctors office. She just didn't want to be messed with. She did cooperate though when they were doing her blood and they got it on the first stick! She was actually fine the rest of the afternoon/night. She just wanted to be in her chair and she wanted her space (and she did NOT like having her diaper changed)! Around 9pm, she drifted off to sleep on her own and Mike laid her in bed! Praying for a good night's sleep for my girl and that she gets over this with just a mildly bad day!!

Thursday, September 6, 2012

Rough night, good day

Thank you everyone for your input. If anyone else has anything to add about Phenobarbital or Lyrica, please leave a comment! It's always difficult making these decisions...but we do have to try something! Reagan has had a pretty good day today. Last night she finally fell asleep around 11:30 and Mike laid her down in her bed around 12:30. The night nurse saw her moving around at 2 and decided to pick her up. She was OK at first but then she started crying and then wouldn't stop. I heard her, so I got up and gave her a dose of Lortab. Within minutes she was OUT and snoring. Her night nurse held her on her lap for the rest of the night (when she tried to lay her down, she woke back up). She was still asleep when I got up this morning but woke up as soon as she was put down. Thankfully she woke smiling and has been good ever since (talk about relief...we didn't know what to expect). She's been quiet, but sweet all day. She fell asleep only once...just long enough to miss school. She had PT and stood in her stander for a while. The adjusted AFOs finally look like they'll work (the only redness she had this time was from the stander)! She's been pretty spitty all day but not nauseous at all (although I did drain a good amount of fluid from her g-tube tonight). I'm hoping she'll go to sleep and actually get some good rest tonight! Thank you for keeping our girl in your prayers!

Wednesday, September 5, 2012

Phenobarbital or Lyrica?

Sleep wasn't great again for Reagan last night. She was fighting it and would get very vocal and kick and roll around. She got some sleep, but not much. I had no idea what to expect this morning for our 9am doctors appt...but I was pleasantly surprised. Reagan and Ryan both fell asleep on our ride in and both were good for the whole appt (of course the nurse practitioner that came in with the doctor played with Ryan the whole time, so that's the only reason he stayed quiet). We talked a lot about Reagan's bad days and what we could possibly do to either stop or make them more bearable. One route to go is try something neurological. The cycling of good/bad days really started up just as Reagan became seizure free, so it's possible that her brain is still trying to misfire...but this is what's coming out instead of seizures. The meds we could try for that are phenobarbital or lyrica. We've never tried either of if anyone has any experience with them, I'd love to hear (although Reagan has tried neurontin, an older derivative of lyrica, and it didn't do a thing for her) . The other route to go would be more pain meds. Higher doses of hydrocodone, things stronger than hydrocodone, opiods (fentanyl patch, morphine, or methadone). I'm leaning toward trying one of the two seizure meds first. All of these things are potentially sedating, but the idea is to try a low dose and go from there (Reagan is notoriously resistant to sedation anyway). After our appt we picked up Reagan's AFOs (which were being adjusted AGAIN) and headed home for speech. Reagan's therapist was waiting for us and got started on therapy right away. The rest of the afternoon was pretty laid back. Reagan was still vocalizing a lot today but she sounded a little less stressed than the past couple days (less stressed=more happy). Tonight she did have a big throw up (maybe I jumped the gun feeding her this afternoon). It kinda came out of no where (although she was having wet burps all day) and then I hooked a drain up to her g-tube and a good amount of drained fluid from her tummy. It was a horrible sort of throw up...usually she'll just cough and out comes the throw up...there was a lot of retching with this one (reminded me of someone with a stomach virus). Hopefully it was nothing. I'm praying she sleeps tonight and wakes up without any nausea and happy tomorrow. (Ryan had his 6month follow up today...the doctor said he's about the size of a 1yr old! Just short of 23lbs, he's more than a handful!)

Tuesday, September 4, 2012

New tube

Reagan and Ryan both decided to wake up around 6am this morning!! Reagan was talking and rolling around and then Ryan started up, so I just got up with both of them. We had a 10am appt to get her gj-tube changed out so it's probably good that we got an early start. For those of you that don't know...a gj-tube is changed out more often and is much more difficult to change out than your typical g-tube (that you can do yourself at home). The gj has both a g part (that sits in the stomach) and a j part that is fed down through the stomach and rests in the upper portion of the jejunum. Texas children's hospital does tube changes without any anesthesia and that's the way we like it. It doesn't seem to bother Reagan in the least (with some kids it actually hurts) and we've never had any problems getting it done...for which I am very thankful (I know of many kids that have a heck of a time trying to get these things placed). Anyway, other than being forced to valet our car because the parking garage was full, everything went smoothly again today. They took her back to a sterile room (so I wasn't allowed back), but they were literally only gone maybe 10min and then she was back again! Done! While on the topic of feeding tubes, I just found this neat resource so I thought I would post a link to it. I was looking for information on places to get cuter backpacks for enteral pumps...but there's lots of good info through this website. Once we got home from getting her new tube, she had her first day of school, physical therapy, and then vision therapy! A good day for a girl who continues to vocalize in not so happy yells all day (we're worried about where she's headed with keep it in your prayers that she stays good)! This afternoon she had a HUGE blowout of a diaper. Probably one of the worst ever! We wiped her down and then headed straight to the tub! Poor girl. Those antibiotics are really kicking her butt (no pun intended)! I'm hoping she'll wind down and get some sleep tonight. Right now she's full of energy... crazy yelling and rolling all over the place (and of course, hands in the mouth)! We've got a 9am appt with the special needs/palliative care doctor...I want to make it to this one!! Prayers please!

Monday, September 3, 2012

Cleaning up messes

Reagan slept fairly well last night (although I did find her completely sideways in bed again this morning). She's been good all day. Lots of smiles, but also lots of vocalizing (which often sounded a little on edge). Hand in the mouth NONSTOP! Eventually she may end up gnawing off her left thumb, she chews it so much! Mike is home all week and it looks like we're going to need him! We have a huge hole in the ceiling over the sinks in Reagan's bathroom. Apparently the overflow to our A/C got clogged and came out on top of the drywall. Big mess (and it's obviously happened before because there was a perfectly square cut piece of drywall in this location). Mike is going to attempt fixing it himself. Hopefully it works. Busy week. School starts and we've got all of our rescheduled appts from 2 weeks ago! Prayers that my girl continues to do well and also prayers for a smooth gj tube change tomorrow!!

Sunday, September 2, 2012

Leak! & Sleepy day

Reagan has had a sleepy day today. She woke up this morning smiling and sweet, but by 11am she was back out again. She slept most of the afternoon but then woke back up and was awake for a while and then fell back asleep just in time for bedtime! Thankfully Ryan was back to his normal whining self today (none of the crazy crying like Saturday). Tonight just as I was headed to Reagan's bedroom to give her some medicine, I thought I heard a sound coming from her bathroom (like water dripping). I figured the sink was on. I got in the bathroom and turned on the lights and there was water all over the countertop...I looked up and the whole ceiling was coming down! A leak in the pipe! Ugh. This is the fourth leak we've had since we've lived here. You plug one and eventually another pops up somewhere else! This is the worse damage done to date. No telling how much this is going to cost to get fixed (and even more if we actually have all the pipes replaced). Ahh, the joys of living in an older house! (Mike HATES this house.) Good thing we have a contractor for a neighbor!

Saturday, September 1, 2012

Sweet girl, bad boy

Reagan slept some last night but she also woke around 5am and was talking up a storm again! We left her in there (she seemed happy enough) and then at 8am when I went in to give her medicine, she was back asleep and snoring! She slept til 9ish when both she and her brother woke up. Reagan has been smiley & sweet all day (and the thing on her back is almost completely gone), her brother on the other hand, has been a holy terror. He'll go from fine to crying inconsolably in a matter of seconds. Something is definitely wrong. He's a whiny boy, but he doesn't really cry that much. He's really been chewing hard on things lately, so I'm wondering if maybe he's really starting to teethe. Whatever it is, he's miserable. And so are we. I woke up with a headache that has just continued to get worse all day! Please continue to keep both Reagan & Ryan in your prayers!!