Friday, August 31, 2012

Cellulits?

Long day. Reagan went to bed early last night and then woke up early this morning. Mike found her in her bed making noises, completely uncovered and kicking around at 5:30am...so no clue how long she had been awake (thankfully she went to bed at 6:30pm...so I know she still got a decent amount of sleep). She's been in a pretty good mood today. A little more chorea than yesterday and some crazy laughs/yells here and there, one big throw up and a little chokey, but overall OK. She does however have this patch of redness right above her crack and we're not sure what it is. The nurse didn't notice it first thing in the morning, but then around 11am (after we took her out of her stander), she saw it. I was thinking it was probably just from the way she had been sitting (her skin gets red so easily)...so I figured it would fade. But it didn't. So this afternoon I started texting her pediatrician (who doesn't work Fridays). I sent her a couple of pics and she was certain it looked like cellulitis (possibly associated with those three poops she had yesterday). I'm skeptical but cellulitis isn't something you want to mess with so we started her on major antibiotics (clindamycin), we're keeping an eye on it, and watching for fever. Definitely need prayers that this clears up and goes away...as well as no ill effects from these antibiotics!! Ryan has been such a handful today (Ryan is such a handful every day). All day he hasn't taken a nap longer than 15-30min...not giving me enough time to get anything done!! He's a whiner too, so if you're not engaging him at all times, he's unbearable!! He's pretty much sitting on his own now. He's been sitting with assistance for months and by himself for the past couple weeks. His balance has gotten better but he will still forget what he's doing occasionally and reach for something out of his reach and then topple over! He's also eating better. I took about a week off giving him solids (when we went to Atlanta) and ever since he's been gobbling up everything I give him. Still mainly oatmeal with fruit added to it, but he also likes yo baby yogurt (and anything we're eating). He still makes a face when you first give it to him (and does the occasional gag), but usually he'll eat it right up after that. He's still cosleeping. Ugh. What a mistake. Sounded like a good idea and now I can't get him to sleep anywhere else (or without using me as a pacifier). I still haven't gotten him into his crib...not even for naps!! So yes...definitely need prayers for Miss Reagan and prayers for her rotten brother as well!!

Thursday, August 30, 2012

Settling down

Reagan was awake most (if not all) of the night last night. Mike got up a few times, in an attempt to get her back to sleep, but it didn't work. He did change out two dirty diapers (2 out of 3 she's had today). I was amazed!! He did it without even calling me in to help! I had no idea until he told me this morning! What a good daddy/husband!! Reagan has been much more mild mannered today. Less excitable, less chorea (all good things). I decided to go ahead and take her in to the pediatrician today to have her checked out...because of all of the bruises on her legs (I remember last week she had a big giant one on her elbow). She didn't think much of it, but decided to run her labs just in case. We caught the lab lady just as she was closing her door for lunch and it took me a few minutes to convince her that we couldn't just run back up there later. She got it on the first stick and even though it stopped for a few seconds when Reagan started kicking around, it started moving again and she got all the blood she needed in one stick. Whew! Tonight I met up with a group of local "mito moms" for a monthly dinner. I've been trying to go for months, but just now got up the courage to do the hour drive with Ryan. He was perfect...both there and back...why did I stress about it so much?!?! (Uh, probably because I know what he's capable of...the screaming and gagging nonstop!) Anyway, Ryan behaved himself (and Reagan slept for Daddy the whole time...after one big throw up) and I had a nice dinner getting to know some other special needs moms! Praying for a good night's sleep for my girl tonight...Lord knows she needs it!

Wednesday, August 29, 2012

No rest for the weary

So no sleep for Miss Reagan last night. She initially fell asleep while her night nurse was rocking her around 11:30pm and then she woke up at 1:30am and has been up ever since! There was an occassional crazy laugh this morning, but for the most part she's just been very serious all day. Wide eyed with dark circles...you can tell she's worn out. Super tense and stressed. Tons of chorea. She's kicking her legs around so much...her little legs are all bruised up (and I'm not even sure what she kicked and when)!! Poor thing, she definitely needs to catch a break. I'm hoping tomorrow will be the day (and tonight will be the night)! She's finally started to wind down a little tonight (although she's acting a little nauseous now), so I really hope she gets some sleep tonight! Please continue to keep her in your prayers!!!

Tuesday, August 28, 2012

Tense

Reagan slept last night and she woke up this morning stressed but not crying. She's been VERY tense and on edge all day. She's fussed and whined and almost cried several times, but she's been OK. She had PT today and actually had a fairly good session. Her head control was great (of course, because she's tense and lots of tone) but she also bared weight through her arms and sat up pretty well. We've gotten a few crazy laughs, but overall it's just a very serious, stern look. She doesn't want to be messed with and hates diaper changes. Hopefully tomorrow we'll be closer to normal. I did go ahead and reschedule her tube change to next Tuesday. I just didn't think it was necessary to drag her into town feeling this way. Hopefully they don't give her tube away before then! Our night nurse is here tonight, so at least we'll be able to go to bed knowing she'll be taken care of! Please keep my girl in your prayers! She needs some good days again!

Monday, August 27, 2012

Bad day

Reagan had a horrible day today. She slept well last night but when I went in to check on her at 7:45am this morning, she started thrashing around and crying. She fell right back to sleep, but I KNEW this did not look good. I texted her palliative care doctor and canceled our appt (the very appt we needed to go to for days like this)...and then we hoped for the best (expecting the worst). I was right. She woke screaming at 9am and continued to cry nonstop til about 10:50. I gave her a dose of Lortab...it didn't do a thing. An hour later I gave her a dose of Ibuprofen...it seemed to help (that's when she finally dozed back off). She slept for about 2hrs when she woke crying again. Some time on Grandma's lap, some time on Mommy's lap (while she was crying she said Mom multiple times)...she finally dozed back off. I laid her down and POW, she was awake again. I gave her another dose of Lortab and then Grandma rocked her and she fell back to sleep. She slept for a while and then woke up again crying. This time it took Mommy to put her back to sleep. Love holding my girl. We thought about taking her swimming all day (to see if it would help calm her down) but the sun was so bright today we decided to wait til tonight to take her. She was actually a little better tonight. She didn't want to be messed with, but she wasn't crying. She swam for a while with Grandma and then we brought her in and gave her a bath. She even dozed off tonight without any medicine...maybe the swimming helped. I just hope she's able to get some sleep tonight and wakes up feeling better tomorrow!! Please keep her in your prayers!!

Sunday, August 26, 2012

Still not sleeping

Reagan had another night without much sleep. She's been good again today...very smiley and sweet, happy to see her Grandma...but over all she seems a little more tense today. Temperature regulation is way off again. Hot sweaty back and cold clammy hands! I'm hoping she can avoid slipping into any bad days, as we have a busy week this week. She has appts in the medical center both Monday and Tuesday. Ryan has been a handful, he hasn't taken a nap longer than 15min all day! I'm not sure what we're going to do with this child. Why is it that all of our children have major sleep issues. Hopefully tonight he'll settle down beside me and actually get some sleep. And hopefully my girl will finally settle down and get some sleep herself! Prayers for sleep and continued smiles for my sweetie!

Saturday, August 25, 2012

Sleep issues

Reagan did not sleep well last night. I noticed early on that she seemed a little twitchy to me and then as she finally dozed off tonight she was pretty restless. Around 12:30am I noticed her moving around a lot and she seemed a agitated, tossing and turning but keeping her eyes closed, so I tried giving her some Lortab hoping it would help her sleep. I think she only slept for a bit, then she was wide awake and I don't think she ever went back to sleep!! Lots of kicking around, I found her completely turned sideways in her bed this morning (she's a wiggly girl). She's been sweet and smiley though, so who can complain?!?! She's had a good day today. Been super sweet and cuddly. Just taking it easy and waiting for Grandma to come tomorrow. Her brother has been VERY needy tonight and not wanting to go to sleep. We're thinking about trying some melatonin tomorrow. When I spoke to his pediatrician about his hysterical crying and fits he pitches in the car, she suggested giving him benadryl. I'm not too sure about that. I guess we'll have to see how desperate we get. I'm hoping the melatonin will work (at least at night anyway). Hoping both of them get some sleep tonight!!

Friday, August 24, 2012

AFO woes

Reagan was raring to go last night so I wasn't sure how well she would end up sleeping. She slept from about 11:30pm-3:30am and then was awake and kicking around, so her night nurse picked her up. She fell back asleep around 4:30-5:30 but she's been up ever since. Lots of energy, this girl! She's still congested and this morning while laying on her back, she coughed up a big throw up. She did it again this afternoon while laying down. I think it was more from sinus drainage than nausea (that's what I hope anyway). We'll see. Keeping an eye on her. I'm hoping all the nausea we saw last week was just from switching her off of the Nexium. Now that she's back on it, she's been better the last couple days, so I'm hoping that continues. We got her up into the stander today (at the end of PT) and YES they added too much to the bottom of her AFO, so they are still uneven (only now the other one is taller). The difference is visible just by looking at the AFOs side by side so I'm not sure why I can see the difference but the orthotist can't!! When in her stander you can still tell that one foot is bearing more weight than the other (it's not as bad as before, but it's still uneven). Ugh. So that means ANOTHER trip there and back to the orthotics place! That will make 3 roundtrip drives for the same pair of orthotics! Can you say annoying!?!? Next week we have a busy week with doctors appts so I should be able to drop them off at the beginning of the week and hopefully get them fixed once and for all. Tonight Reagan was super sweet and cuddly (and more still). You can definitely tell she's tired. I'm hoping she gets a good night's sleep tonight...she needs it!

Thursday, August 23, 2012

Good day

Reagan had a good day today. She slept well last night and then woke up smiling this morning. She's been VERY vocal...at times I was worried she would go to the other side...but she stayed happy all day! She's still very congested. Sounds a bit like a little pig with all the snorting! (but even being congested she maintains O2 at 100%) She's been very squirmy, kicking her legs around nonstop and not holding still for a second (chorea). Hands in the mouth CONSTANTLY...but what can you do. She had two therapies today...OT and Speech. Today was her OT's last day (she's leaving private therapy and going into the school system), so hopefully they'll find Reagan another OT soon. Reagan's speech therapist brought her daughter again and Reagan definitely enjoyed that (too bad she's starting school again and we won't see her for a while). No PT today (or last week) because she was moving her son off to college. Next week we'll be back to PT 3x week! So all in all a busy day. Just loving on my girl a little tighter and feeling sad for Gabe's family but knowing their faith will get them through this tough time. Keeping them in my prayers!

Prayers for Gabriel

Wow...everyone needs to watch this video and pray for this little boy and his family ASAP! It's amazing the faith this father has even in the face of losing his child...he is witnessing and bringing people to God with every word! Amazing! AMAZING!
http://www.gabrielshope.net/

**No time to post tonight...will update in morning. I did see on Facebook that little Gabe passed away tonight! Please keep his family in your prayers!!**

Wednesday, August 22, 2012

A more normal day

Reagan slept well last night and woke up at a normal time this morning. She's had lots of energy today. Moving, moving, moving. Very smiley. Still a little congested sounding. I'm wondering if maybe she's got some sinus drainage going on. It doesn't seem to be bothering her too much, but every now and then she'll have a little cough, so maybe that's why. She did well for her therapies and has been vocalizing a little more today. Her brother is still in the process of a major freakout and I still haven't figured out what's wrong with him, so I'm hoping he calms down and goes to bed soon!!

Tuesday, August 21, 2012

Sleepy day

Reagan slept well last night and then this morning she just kept sleeping!! We had to get her up and take her in to get a new GJ tube (scheduled change)...but even with us manhandling her, she just kept snoozing! We waited 45min or so in the waiting room only to have them come and tell us they didn't have her tube in stock!! Now this appt has been scheduled for a week and they can have these tubes overnighted...so there's really no excuse for this! Anyway, they looked at her site and determined that she really needed to have the same tube, so they are ordering it and we're going to do it next Tuesday! Ugh. What a waste. On our way home we stopped and picked up her AFOs (that I had to take back in because one was shorter than the other and when she stood in her stander, one foot didn't touch). Just looking at them, it looks like they built it up too high now!!! Ugh. These people are driving me crazy!! I hope I'm wrong, but we won't know for sure til we get them on her and get her in her stander again (and that's obviously not happening today). Her PT came and stretched her while she was sleeping. She said Reagan was even fighting against her in her sleep!! She spent the rest of the day sprawled out on a wedge in her therapy room...stretching, rolling, but snoozing it up! Such a sweet, sleepy girl. Her brother has been pretty sleepy too. His swing died yesterday. He's 21.8lbs and he's already killed the motor on his swing (that he likes to sleep in). Ever since it died, I've just continued laying him in it...I just can't put him in there awake (he'd fall asleep in his swing while it was moving)! Definitely time to get this boy into his crib! He's still sleeping with me at night (and nursing off and on all night long) and in his swing during naps! Reagan did finally wake up at 7:30pm and was WIDE awake. It's like she was saving up all her energy for tonight! She's a super happy girl though. Big giant eyes, huge smile, and rolling, rolling, rolling! She sounds a little congested to me, but I'm not sure where it's coming from. Her sats were good today, so she's obviously breathing OK. Hopefully she's able to wind back down and sleep tonight! I just heard a big yawn...that's a good sign!

Monday, August 20, 2012

Sweet nauseous girl

Reagan slept well last night and woke up this morning in a good mood. She seemed to have turned a corner. She was definitely spunkier and smilier than she's been in days, but the nausea we were hoping to avoid soon reared it's ugly head. She's been pretty nauseous today. Several really big throw ups and we've had to keep her elevated (because it seems every time we lay her down, she starts getting gaggy again). She's been nauseous for a week now, but I just figured something out. We switched her reflux med from Nexium to Prevacid last week (because the manufacturer isn't making it right now). I called around and located some Nexium, so she's back on it tonight...I'm hoping that's what it was. Of course, her hands in her mouth aren't helping either. Her temperature regulation has also been WAY off today. Arms and legs ice cold and clammy and body constantly over heating. And the chorea is out of control...she's a mess. But she's been sweet. And so smiley!! Now if we can just kick this nausea to the curb...





Saturday, August 18, 2012

Better plus pics

Reagan slept well last night and then woke up smiling this morning. She's been in a better mood today with less nausea (although she got a little chokey and had a little throw up right before bedtime). I'm hoping tomorrow will be completely nausea free. She's been very laughy today...some crazy laughs and some appropriate laughs (and some squeals). Here is a pic from Reagan's photoshoot from a couple of weeks ago. Click on this link to watch the slide show with all of the pics (make sure your volume is on)...guaranteed to make you cry!

Nausea...so sick of it

Reagan slept well last night and then woke up this morning still very much "off". She's been very clammy and sweaty and super gaggy. She had a few really big throw ups this morning...poor girl, she just can't seem to kick this nausea. She's been having nausea of some sort ever since Tuesday! She hasn't been this nauseous since before starting nortriptyline. I'm hoping it will pass soon. She had a huge blowout of a diaper and I think she felt better afterward. Her mood this afternoon does seem improved. She's been laughing A LOT, and although crazy laughs, any laughs are better than none (and much better than crying)!! Less nausea during the day, getting worse again tonight...I'm still draining a decent amount of fluid from her g-tube. Looking forward to an end to this nausea and a good week next week...my girl deserves it!

Here's a pic I missed from the Astros game last week...I just found it on my phone!!


Friday, August 17, 2012

Recouping and appointment highlights

I'm still SO exhausted!!! We all slept pretty well last night, but boy am I worn out!! Ryan too. He fought naps all morning and then when he finally fell asleep, he slept for hours!! Reagan woke up this morning still very much on edge. She woke up with a little gag here and there but overall she wasn't very nauseous today. She has been going back and forth between the crazy laughs and crying outbursts all day. I gave her Lortab this afternoon to settle her down at one point...it helped her relax for an hour or so, but that's it. We've had some major nursing issues this week and next week it seems we'll be starting over with two new nurses. That's all I have to say about that. Prayers are appreciated in that area. Reagan has been very similar today to yesterday. She seems very sensitive to stimuli...she prefers not to be messed with. Diaper changes or even just trying to talk to her, seems to aggravate her and the nausea is back again tonight. This is something we talked to Dr. Kendall about. She thinks Reagan may be having stomach migraines that are cyclical in nature and essentially what we call her bad days (aka cyclic vomiting syndrome). Unfortunately every medication she suggested (or nearly every one)...we've already tried. She's going to keep thinking about that one. She also thinks it's possible, not likely but possible, that Reagan's mitochondrial disease (which is clear from her muscle biopsy enzymology) may be secondary to something else...possibly a seizure gene. That would explain why none of the typical mitochondrial gene testing has come back positive. She wants to go over the tests that have already been done and then probably order a panel of tests looking at seizure genes. Just in case. An interesting idea. No one has ever really suggested that. Makes sense since the majority of Reagan's issues are neurological. She also made a couple of suggestions on additional mitochondrial supplements that we've never tried (Alpha Lipoic Acid and L-arginine). And the last thing she mentioned was IVIG. It's been shown to help with inflammatory conditions (even in kids that don't have immune issues). Reagan does have immune issues and it's possible that these bad cycles she goes through have an inflammatory component. We have a friend who's little boy is about to start IVIG for treatment of seizures. All interesting ideas. We'll see. Prayers for my girl to get over this nausea and have a better weekend!!

Thursday, August 16, 2012

Atlanta trip

Reagan was not happy Wednesday night...there was crying off and on and we were very uncertain as to whether or not we should even attempt this trip. Mike and I didn't sleep a wink but when Reagan started stirring around 4am, there were no tears so we decided to go ahead and go for it! Both kiddos slept the whole way to the airport. We made it through security fairly quickly and got to the gate with plenty of time to pack up the stroller (yes, I opted to take the bigger jogging stroller)...although Mike had to balance both kids on his lap while I took it apart and put it in it's bag!!! It was a chore to get on the plane with both kids and all of our stuff at 6:45am with no sleep...especially considering we were on one of those smaller commuter planes (two seats by two seats). The worst part of that was that Mike sat beside Reagan, so I had to sit beside a complete stranger (tattooed man) and breastfeed!!! Thankfully he slept (and snored like a bear) most of the way. Ryan kept trying to touch the tattoos on his arm the whole time!! Ryan was quite the handful on the flight there. Lots of whining, not wanting to breastfeed (the only way to shut him up)...let me tell you, it was loads of fun. Reagan broke out into tears once, but Mike managed to calm her down and she was OK after that. Once we got to Atlanta, we went to pick up our rental car. Lots of "train" rides, but so much easier than taking the usual rental car shuttles. Once we got our car, Mike began the process of installing a rented car seat for Ryan (what a mess) and getting Reagan's seat situated and Reagan harnessed up...let's just say it took a while and he was drenched in sweat by the time we got out of there! We made our way out of Atlanta to Alphretta and we had just enough time to pick up some fast food and eat it in the parking garage before our 1:30pm appt! I'll go into more detail about the appt in another post. Let's just say that I get the feeling this doctor genuinely wants to help and is actively going to be thinking about medications/tests that might benefit Reagan. Of course, Reagan did have to start up crying the second we got into the doctor's office and she cried off and on the whole time we were there!!! Ugh. We were out of there and on our way back toward Atlanta by 3pm. Our flight wasn't supposed to leave til 9:15, so we were trying to figure out what we wanted to do with our time, when I saw that I had three unread emails from United telling me our flight had been delayed. 9:30pm, 10:15pm, 10:55pm...that would put us back in Houston after midnight!!! Our long day was looking like it might get much longer!! So I called United and they told me that they didn't even have it in their system that our flight was delayed (thank God I called)! Then she asked if I would be interested in trying to get on a earlier flight. She was able to get us on the 7:17pm flight without any extra charges or penalties, so we made our way back to the airport! There was lots of confusion at the Atlanta airport about where we had to check in and where we were supposed to go through security...let's just say it's a confusing set up and the people there were less than friendly/helpful. We finally made it to our gate and went through our preflight routine again. This time we had a commuter plane that was even smaller, 1 seat by 2 seats! Ryan and I were originally in the one seat across the aisle from Mike and Reagan but they insisted we move because there was only one oxygen mask above that seat. Thankfully they were able to move us to the 2 seats 2 rows behind Mike and Reagan and there was no one sitting beside us (I think it was the only empty seat on the plane). We did have a lady sitting in the one seat across the aisle that Ryan would NOT stop flirting with!! Every time she looked away, he'd stare at her until she looked at him again!!! Lots of laughing and squealing this go around. Reagan got pretty nauseous on this flight and I could hear her cough and gag several times. She was so tired though and just wanted to sleep on our way home but her brother decided to pitch the biggest fit ever (because he had slept on the plane and wasn't tired anymore)! He was so good with car rides the entire trip, but now he was hysterical...crying, gagging and choking the whole way home! We finally got home sometime after 10pm and I finished up medicines, did Reagan's formula, and we all collapsed in bed!!! It could have gone better, but it could could gone soooooooooo much worse (all things considered). One thing is for sure...it was exhausting!

Flirting


Moving, moving, moving

Wired!

Reagan was not up for photos...not a good day for my girl!

Wednesday, August 15, 2012

Ready, set...

Reagan woke up last night around 12:45am, so her nurse went ahead and picked her up. Thankfully she was no longer nauseous. She was awake til around 2am when she fell back to sleep, so she just laid her down in her therapy room so she could keep and eye on her. She ended up sleeping til around 8:45am when I made a noise in the other room that woke her up (oops)!! She woke a little startled but sweet and she's been good ever since. A lot less chorea today than we've seen in days..but her hand is still constantly in her mouth (which is a gagging risk in itself...because she sticks her fingers straight back there)!! Tonight I drained quite a bit of fluid out of her tummy, so she's definitely still off a little GI wise. Hopefully both kiddos get a good night's sleep tonight (and sleep on our way to the airport) and behave themselves on the plane!! I've been debating whether or not to take Reagan's jogging stroller since it is just a quick one day trip. It would be SO much easier not to have to worry about taking it apart and putting it into it's travel bag (so it doesn't get destroyed) and it is so bulky...but it's a lot more comfortable for her to be in and if we have to change a diaper, we can do it no problem in that stroller. The alternative is a Maclaren umbrella stroller that we have which is SO light and easy to maneuver BUT it's not nearly as comfortable for her (she's pretty much outgrown it in length) and it doesn't recline at all so any emergency diaper changes would have to be done on the floor somewhere!! I'm not a good decision maker so I still haven't decided what to do, but at this point I'm leaning toward the jogging stroller and just hoping we're not pressed for time tomorrow morning! Please keep us in your prayers! I'll probably have to post Thursday's update Friday morning...so don't worry if you don't see a post!

**Update-It's 4am and we're still not sure if we're going. Reagan was up crying off and on last night and no one got ANY sleep. As long as we avoid any more meltdowns, we're going to go! Please keep her in your prayers!!!**

Tuesday, August 14, 2012

Nausea but less on edge

Reagan did not sleep well last night...but it could have been A LOT worse. After her whole meltdown, the Lortab helped almost instantaneously and she was out! She actually slept fine until about 3:30 when I could hear her starting to vocalize in her bed (not in a happy way). Mike went and laid down with her but she wasn't getting any better, so he gave her another dose of Lortab. I think that helped her sleep for a little while...I'm not exactly sure when she woke back up. I heard her starting to get upset again around 6am, so I just left Ryan in bed with Mike and Reagan and I had some Mommy bonding time. She actually started crying the second I picked her up out of bed, but once we got settled in the living room she was fine. She's been that way most of the day today. Definitely on edge, but fine. Every now and then when I'm talking to the nurse or the nurse is talking to the therapist (anyone talking to someone other than her), she starts vocalizing letting us know that she's starting to get aggravated. As long as we cease and desist, she's fine. She made it through both OT and PT without much of a problem. Both commented on how well she was doing with her head control today. OT picked up on some gaggy signals this morning (wet burps and such) and later this afternoon Reagan did get nauseous and threw up a couple of times. Poor thing. Please keep her in your prayers! Tonight she was still nauseous but precious...giving us little smiles and looking like such a little angel!
So...the big plans for Thursday. We are going to see a new mitochondrial specialist in Atlanta, GA. Her name is Dr. Fran Kendall and I've heard great things about her. I'm hoping she might be helpful in addressing Reagan's crazy cyclical good/bad day pattern (or at least give us some insight). We're just going for the day. That means we'll be leaving first thing Thursday morning and coming back late Thursday night. The good thing is we won't have to pack and take lots of heavy luggage with us...the bad thing is it's going to be one heck of a LONG day! We're all going...me, Ryan, Reagan, & Mike. Should be interesting! I'm just hoping Reagan is feeling better and Ryan in not a holy terror! Prayers needed for that for sure!!

Monday, August 13, 2012

Headed the wrong direction

Reagan was up off and on last night. She kept making noises and moving around and then falling back to sleep. Probably not the most restful night for her. She's been good today but you can definitely tell she's headed in the wrong direction. Lots of movement...rolling and squirming all over the place, kicking those legs nonstop, hands constantly in her mouth. Poor thing, she's tearing up her face with her fingers...she's got little scratch marks all around her lips (even though I'm constantly trimming her nails) and a her cheeks and chin are all red from the spit! Tonight she's been very vocal, but not in a good way. She's very much on edge and we're just hoping we can get her to bed and avoid a meltdown as well as any night time drama (no night nurse til tomorrow). Oops...spoke too soon...we already had a giant meltdown right before bed. Hoping the Lortab will keep her asleep for a while! We've got a super busy day coming up on Thursday and really need her on her best behavior (more details on that to come)...please keep it in your prayers that she gets over this quick and is good to go by Thursday!

Sunday, August 12, 2012

Astros game and picture marathon

Reagan slept well last night and then at 7am she and her brother were up and raring to go. Shortly thereafter Grandma arrived...she got an early start this morning hoping to catch the meteor shower on her drive here (she didn't see a thing). We headed into town just before noon and both kiddos were great on the drive there. Reagan fell asleep and Ryan was wide awake but happy to just stare out the window. Reagan woke up when we got to the ballpark and she was all smiles. We decided to take her wheelchair because it gives her a better view of things (normally we'd just take the jogging stroller). We had great tickets in the handicap accessible area with a whole group of mito families. We met some new people and saw some old friends and had a good ole time! Reagan and Ryan were both perfect angels and seemed to enjoy all the excitement! Right as we were leaving we realized that Reagan's diaper had sprung a leak...but that was easily solved when we got out to the car (which by the way, was parked just outside the ballpark in a front row handicap spot, definitely the best parking we could have asked for). We were still reveling in how smoothly everything went on our drive home when Ryan started up! He pitched a serious fit...he started with the fussing, then the crying, then the choking and gagging! Everyone was traumatized by the time we got home! He continued to be pretty fussy/high maintenance for the rest of the night...boy did he put on a good show while we were there! All in all we had a great day out with the kiddos (it was car ride and time at home that was the challenge)!!










Saturday, August 11, 2012

Long naps

Reagan slept well last night and was laying in her bed smiling when I went to give her her medicine at 8am! She was super sweet and cuddly all morning...although she's still a bit hard to hold because she wants to roll. Her brother slept better last night than he has in a while and then today has been taking lots of long naps (maybe because he slept so little yesterday...hopefully that's all it is). Reagan also took a nice long nap this afternoon. It was eerily quiet with both of them sleeping (I'm not used to that)...of course it didn't last long, her brother was back up in no time!! Reagan continued sleeping til around 8pm tonight. She woke up smiley and was up for a few hours before falling back to sleep. Tomorrow's a big day...Grandma is coming in the morning and then we're all going to go to an Astro's game! I hope everyone is on their best behavior!!

Friday, August 10, 2012

Full of energy

Reagan was wide awake this morning when we got up. Her nurse said she woke up around 5am and had been up ever since. She was very smiley and very energetic today. She had PT first thing this morning and then spent an hour in her stander (and ate). Then she had OT and speech. Afterward she fell asleep and then slept the rest of the afternoon. She woke up around 6:30pm and was full of energy once again. Lots of kicking and rolling. She kept squirming off her mat and onto the hardwood floors! There were times where she seemed a little on edge and that the squeals might turn into cries...but the smiles persevered and she even went to bed smiling. Please keep it in your prayers that the good days continue as we have big plans for Sunday and even bigger plans for Thursday next week!!


Now...if we could only get them both to sleep all night!!!

Thursday, August 9, 2012

Cute pics

Reagan slept well last night but she did start moving around at 1:15am and her night nurse picked her up. She fell right back to sleep and then slept today. She had speech therapy this afternoon and her therapist brought her daughter. They sang to her and read to her...she loved it! (we got some cute pictures...notice the matching shirts) Then PT came and worked with her and afterward she even spent an hour in her stander (and ate some food)...no problem. She's still been a little gunky in the throat today. And very spunky this afternoon. Kicking and squirming, hands constantly in her mouth (fingers down her throat choking herself)!! Then tonight she's starting to sound a little fussy...thankfully the night nurse is here, but I'm hoping the clonidine will work and help her to settle down and fall asleep! Hopefully we can avoid heading into bad days...we are way too close to the weekend for this!! Prayers for my girl please!!


Wednesday, August 8, 2012

Still crazy but better

Reagan was laughing and making a lot of noise last night but each time I checked on her...her eyes were closed. She obviously didn't have a very restful night's sleep, but I guess we'll take what we can get. She woke up this morning very much the same as yesterday...wide, frightened eyes...but quiet. The crazy laughs started back up the second I picked her up out of bed! She's been laughing a lot again today, but the laughs today have been more laughy and less fussy. She's also been relatively still today. Not as much moving...even her hands have been still (not constantly in her mouth and hair). She has had two minor meltdowns today, one little crying episode this morning when she decided she didn't like a particular toy and then a big crying episode this afternoon right as the nurse was leaving (we were talking about something and Reagan decided that she didn't like us talking)! Other than that, she's been good (no Lortab needed). She has sounded pretty gunky in the throat all day but she hasn't really been "gaggy" (we even fed her this morning). Hopefully she's turning a corner and leaving these "off" days behind! We need good days...we have big plans for this weekend that involve Grandma and an Astro's game (with the mito group)!

By the way...Ryan didn't sleep any better last night after his cereal...if anything he slept worse. But today he gobbled it up again and seems to be sleeping a little better! Hoping this will translate to better sleep at night!!


Tuesday, August 7, 2012

On edge

Reagan slept well again last night but woke up this morning on edge. She had those wide eyes and that zoned out look on her face. She calmed down for a little while, but has had the crazy laughs and been very much on edge all afternoon. We tried giving her some Lortab to take the edge off and it seemed to help a little but not much. She's also backed up in the poop department. She hadn't gone since last Wednesday. She finally went tonight (with my help...I know...TMI) but she was still trying to hold it in! Just another example of how her bad/off days are obviously related to her GI issues. Tonight the crazy laughs continued but they were much closer to tears. Thankfully she made it through the night without any major meltdowns...now we just have to get through the night! She's definitely on the verge of bad days...I'm just hoping with a lot of prayer and a little Lortab, we can keep her from falling into that downward spiral! Please keep my girl in your prayers!

(Today was Ryan's first official day of eating solids...he's been showing interest in eating for quite sometime and we've been dabbling for a while. He ate oatmeal with apples 3x today and would have probably eaten a lot more than I gave him. We're just hoping some cereal in his belly will finally get him to sleep better! Fingers crossed!)

Monday, August 6, 2012

Pretty good

Reagan slept well again last night. She woke up this morning without smiles but content. She's been a good girl all day. Not a lot of smiles but we have gotten a fair share of laughs. Grandma got the most laughs when we did face time with her on the phone this morning. Reagan had been very serious but Grandma really perked her up! Tonight Reagan was very rolly/squirmy. We had her on a blanket in the living room and she kept working her way off of it! All in all, a pretty good day for my girl. She held it together even with her brother constantly whining and pitching fits (that kid is quite the handful)!!


Here's the video I promised...

Sunday, August 5, 2012

Serious but OK

Reagan slept well last night. When she woke up this morning there were no smiles but she was OK (and no real nausea today). She was fine all morning and then she started to get a little fussy...next thing we knew she was asleep! She slept for maybe an hour and a half or so til we woke her up. Our Bible study had a little get together this afternoon so we had to get her into the car and it's impossible to get her into that harness without waking her up! She was a little startled but calm. We have a small Bible study but we are slowly being outnumbered by our kiddos...so things tend to get a little rambunctious! Reagan and Ryan both did well with all of the chaos! Reagan was indifferent but Ryan seemed to enjoy the noise and activity. He's a little hyperactive himself (takes after his dad)! I had him in the bouncer today and he was going crazy in that thing (I'll try to post the video tomorrow)! Anyway, everyone is finally in bed so it's time for me to do the same!

Saturday, August 4, 2012

Road trip

Reagan fell asleep last night and we were hoping she'd stay asleep and sleep off her nausea. That didn't exactly happen. She woke up fussing and was actually pretty upset. It wasn't looking good. I gave her a dose of Lortab and Mike laid down with her til she fell back to sleep...but we were both worried what today would bring. Then this morning when I went in to get her she was lying in her bed wide awake smiling!!! Talk about relief!! She was still pretty nauseous this morning and had a big throw up shortly after waking up...but she was happy (so we were happy about that)! I spent some time on the phone talking to the pharmacist trying to track one of her medications that they have discontinued (nortriptyline). The only place they had some was in Kemah, about 45min from our house. So we decided to take a little road trip and we went and picked up the prescription and then went down to the Kemah boardwalk for lunch. It was hot and very sunny, so we didn't do a lot of walking around, but everyone got a little sun and spent some time out and about (and Ryan even behaved himself in the car). Before heading out we did do a little carseat shuffle. Since Ryan is now just short of 21lbs (I think Reagan was 1yr at that weight), we decided to switch him over to Reagan's old Britax Boulevard carseat. Reagan has been using the Britax Traveller Plus (a special needs carseat we got several months ago) and we HATE it. It's way too plush and gives Reagan no support whatsoever (even her Boulevard worked better). So I saw this ez-on adjustable vest online and decided to order it and give it a try. We used it in conjunction with her special tomato sitter and it gave her far more support than anything we've tried in the past (she likes to lean forward out of her carseats and she didn't do that at all with this)! We're planning on using it when we travel as well, so we don't have to bring a big heavy carseat along with us!! It's a little tricky to get on, but very easy to get off...so we'll see. I'll keep you posted. Please keep it in your prayers that our sweet girl continues to have good days!



Sitting up so well in her harness (and holding mommy's hand...so sweet)



Not thrilled to have her fat brother sitting on her (sorry the lighting was blue...it was the Aquarium Restaurant)

Friday, August 3, 2012

Throw ups again?!?

Reagan slept well again last night and woke up happy again this morning. Very similar to yesterday, she was spunky, vocal, and rolling everywhere. We fed her this morning and she did really well with it. I gave her pear/pineapple and she seemed to like it a lot, taking very good bites. I gave her a little more than yesterday, but didn't want to over do it. Afterward she had speech and OT and did very well for both. Then this afternoon...out of no where...she had a little cough/gag and then 30min later she had a big throw up (and then fell asleep afterward). Poor girl and she was doing so well!! She woke up and was fine, just a little dazed for a while, and then she had another throw up! She's been pretty spitty and constantly sticking her fingers in her mouth, so I'm sure that doesn't help. Overall she hasn't really been nauseous, so I guess we'll just have to see how she's doing tomorrow. Hopefully she hangs in there and continues to have good days! Come on girl...you can do it!!!

Thursday, August 2, 2012

A little crazy

Reagan slept well last night. I know that because her brother kept tossing and turning all night and each time I would look at the monitor to check on Reagan and every time she was fast asleep. She woke up happy again this morning. She's been very alert and sometimes a little crazy today. Lots of kicking and moving around. Hands constantly in her mouth. Vocalizing a lot (and at times sounding a little too close to a whine for my liking). She's been good though. Yesterday she stood in her stander for 30min in her new AFOs without shoes and afterwards had very little redness. Today she stood for 45min and we pushed and shoved until we got her AFOs into her old shoes, but afterward her feet were a lot more red. Not sure if it was the shoes or if the AFOs weren't on as well or if maybe it was just the extra 15min...thankfully the redness went away in 30min so we'll just keep an eye on it (my girl has VERY sensitive skin)! We're taking it slow with the AFOs and stander because it has been quite a while since she's used either! We also fed her again today...for the first time since the nausea last week. She did OK. I only gave her a little, just to be safe, but she seemed to enjoy it. Tonight she seems a little more tense. Hopefully it's nothing, but it has us a little worried. Please keep her in your prayers...we need more good days for our girl!

Wednesday, August 1, 2012

Spunky

Reagan slept like a log last night. And this morning she slept and slept and finally at noon I went in to check her diaper (which by the way was still dry...my girl doesn't pee until she wakes up) and I accidentally woke her up! Oops. She was happy and smiley though, so that's good. She's been very energetic ever since. Kicking, rolling, and squirming all over the place. A spunky girl! She's still giving me grief with the glasses but she's keeping them on slightly better than yesterday. She was having quite a bit of gas this afternoon and then tonight we had another HUGE blowout! Not sure what's up with these explosive poops, but I could live without them!! (I guess, at least we know things are moving!) She's been a good girl again today!