Friday, December 31, 2010

Keep those prayers coming!

First, let me just say how much I appreciate everyone's prayers and offering of support. I know it seems like such a small gesture, to make a comment on someone's blog, but it is so encouraging to hear that people out there care and are praying for us! It's been a rough couple of days and I've cried many tears for my little one and last night was probably the roughest. Reagan was out of control. The movements were nonstop, running in place, continuous gagging and retching, and of course not a wink of sleep...it was horrible. Mike stayed up with her from 11:30-3:30 and then I stayed up with her from 3:30 and on. When I got up at 3:30am I noticed she felt really hot. I took her temp and it was 101.5. I immediately gave her some tylenol. 30min later her fever was over 102. I started alternating tylenol and motrin but it wasn't until late this afternoon that her fever finally went down under 100. I called her doctor's office early this morning (but of course they were closed). I spoke to the physician's assistant who was on call and she thinks maybe Reagan just needs another day or two on the antibiotic. I don't know. Why does she now all of a sudden have a fever (when she didn't have one when she first started the antibiotic)? We have seem some slight improvement today. The chorea in her legs has calmed down quite a bit (although her arms are still going strong). Tonight she has made eye contact with Grandma a few times...the first time in days we've seen any recognition at all. We're all just really hanging onto hope that tonight will be the night that she finally sleeps. Please continue to keep her in your prayers! We appreciate it more than you will ever know!

Thursday, December 30, 2010

Misery

Last night was another all nighter for Miss Reagan. Mike stayed up with her while I slept from from 9:30pm-1:00am and then I got up and sat up with her til 9:30am (once the nurse got here and I gave Reagan all of her medicine, I went back to sleep for a couple of hours). Reagan fell asleep for a little while for Mike, but she never dozed even for a second the whole time I had her or all day long. She either cried or moaned the entire night (and all day today). She HAS to be exhausted. She's got horrible chorea right now that is making her kick her legs and flail her arms...she's moving nonstop! She kicks her legs around so much it looks like she's sprinting! (She's actually kicked bruises onto my shins.) She's moving so much, she's making herself sweat like crazy...her hair is soaking wet. And her little legs are just trembling because she's so tense. When she gets like this often times her hips pop because her legs are so tensed up...now I'm noticing that even her arms are popping now! Last night she bit her hand twice and tonight she bit the inside of her cheek and made it bleed. It's horrible, she's just got that zoned out, crazy look on her face at all times. There's nothing you can do that gets through to her. There's no way to snap her out of it. She's miserable. Beyond miserable! And I'm having a very hard time sitting here watching her suffer like this. It's horrible. I'm hoping by tomorrow the antibiotic will start working and give us our sweet little girl back! My mom is coming back into town tomorrow, so it will be nice to have some extra reinforcements this weekend. Please say some extra prayers for our little one...she needs them.

Wednesday, December 29, 2010

An ear infection with a side of strep throat

Well, we enjoyed it while it lasted. We had almost two full weeks of bliss with Miss Reagan but yesterday afternoon that all ended. The fussing started and then the crying and she was up the entire night last night. Yes, another all nighter (and since she cried for most of the night, it was an all nighter for the entire house). Tonight we're going to be a little smarter and I'm going to go to bed early and get a few hours of shut eye so that I can make it through the night with this extremely irritable child. She's very tense, lots of chorea, feet shaking...just all around miserable. I debated today whether or not to take her in to the pediatrician. I hate dragging her into the doctor for no apparent reason, but then I'm always worried about what if I don't take her in and she has something that's easily treatable like an earache or strep throat. Well...how about both! Yep, my little miserable girl has both an ear infection in her left ear and a very red throat (that tested positive for strep)! Poor thing! The doctor thinks she probably picked it up from someone during our Christmas festivities. Merry Christmas! We quickly started her on a new antibiotic (Suprax)...so hopefully she'll see some relief tomorrow or Friday at the latest. I've got a sore throat too, but they swabbed me and as of now, I don't have strep. Please say some extra prayers for our miserable little one. She needs some relief from all of this ASAP.

Tuesday, December 28, 2010

The party's over

Reagan slept well again last night and even slept in a little this morning. When she woke she was not all smiles like previous days, but she wasn't crying either. Not too long after she woke up she finally had a dirty diaper (it's been days). She was good though, it didn't seem to upset her at all. Overall, she was content. Not super happy or smiley, but OK. She did well for both OT and PT and then when PT was done she put Reagan in the stander. She was fine for 20min or so and then we saw her starting to tear up. So we immediately took her out of it but the tears just kept coming! She had a lot of gas, so I'm guessing this is all tummy related, but poor thing she is miserable. She's been crying pretty much all afternoon/night. I gave her a dose of tylenol tonight hoping it would help...we'll see. I'm hoping and praying she'll sleep tonight, but I'm not holding my breath. My Dad and stepmother came in tonight to visit (Reagan's been great for weeks and decides to change it up on the day they come)! As of now we only have one nurse working for us, so we gave her Wednesday off since we have visitors. Hopefully Reagan pulls it together and has a decent day tomorrow. Please keep her in your prayers.

Monday, December 27, 2010

Great days

Reagan has had another great day today. She slept well last night waking up at 6:30am this morning, a little early for my liking, but how can I complain getting that much sleep. She woke smiling and she's been smiling all day today. She's even laughed a few times in response to us laughing. Pretty neat. She did take one little nap (I had to take a picture of her, she looked so cute), but overall she's been awake and alert all day. Too bad she didn't have any therapies today. We got a call from our home health therapy company today saying that our speech therapist has decided she doesn't want to work with us any more. Yeah. Instead of calling us, she cancels Friday's session and then just doesn't show today. We had been trying to get speech for months and just in the last few weeks we finally had this therapist pick Reagan up. But in true Reagan fashion, she had one bad week (two weeks ago) and we had to cancel most of her therapies for the week. Well apparently this therapist didn't like that and has decided to drop us! Whatever. Good riddens (am I bitter...maybe a little). I just hope we can find someone else. On another note...I've really been slacking with the CPAP lately. It's just that Reagan's sleeping so well (and doing so well), I hate to mess with anything! She's also sounded a little congested today and yesterday, so I don't know how well it would work anyway. Her nose has been a little stuffy and tonight she sneezed a few times. I'm hoping it's nothing more than allergies or stuffiness from us running the heat. Please keep it your prayers that these good days continue...we're loving it!


Sunday, December 26, 2010

Sweet girl

We have had yet another wonderful day with our sweet girl. Reagan not only slept the entire night but she slept in until 11:15am this morning! And again she woke all smiles! She's been smiling, laughing, and "talking" all day today. She's been just precious! Each day she wakes smiling and we just can't believe how blessed we are to have yet another good day with her! She's rolling all over the place. We lay her down on the floor (on her wedge) next to our fireplace, only to find her completely turned around only minutes later. She rolls back and forth onto her side and somehow that pivots herself in circles! It's too cute. Tonight she fell asleep around 7pm...very unlike her. Maybe she just wore herself out?!?! I'm guessing she'll probably wake up sometime before we go to sleep. Hopefully her clonidine will help her to get back to sleep and have another restful night. I'm hoping this wonderful mood continues this next week so she can have some great therapy days as well! We've had such a great Christmas and hope that everyone else has as well! Here's to a great new year!

Saturday, December 25, 2010

A wonderful day

Reagan has had another magically wonderful day today. After last week we sure weren't expecting it, but we truly were blessed to have an absolutely wonderful Christmas with our little one! She actually slept in a little today...we started opening presents around 8:30am and she woke around 9:15am...all smiles! We were all SO happy to see her smiling, that was the best present any of us could have gotten! But we did get presents...lots of them. Reagan hit the pillow pet lottery getting 4 different pillow pets, tons of clothes, movies, books, slippers, a glow dome, a puzzle, two different talking dogs and so much more. I guess you could say this girl is a bit spoiled. We spent Christmas morning at our house with my mom and my sister and then this afternoon we went over to Mike's sister's house and spent some time with his family. Reagan did really well, even with all of the excitement and commotion, she just smiled away. She did get a little tired in the end and fell asleep on our way home. But the second we got home, she was back awake again and raring to go. Thank you so much for all of your prayers. We really did have a wonderful Christmas...an answer to many prayers!


Notice the ridiculous amount of presents and giant stockings! We only have 1 child and 4 adults celebrating Christmas here!

Loving her pillow pet!


Reagan with my sister (Aunt Amber).


Asleep and ready for bed (hopefully another full night's sleep)!

Friday, December 24, 2010

Merry Christmas

Last night Reagan actually had a pretty decent night. As far as we know, she slept through til 6:30am this morning. And believe it or not....she woke all smiles!!! She's been smiling, laughing, and squealing all day today! Talk about relief...I feel like we've gotten an early Christmas present. She has been beyond precious today. We couldn't have asked for a better day! Praying that tomorrow we have some more of the same. I hope everyone has a very Merry Christmas!!


Thursday, December 23, 2010

Headed in the wrong direction

Last night was a horrible night for sleep. Reagan was up every 30min-1hr all night long. Needless to say, we didn't even attempt CPAP or oxygen. Thankfully Mike had today off so he helped me out and between the two of us we managed to get some sleep. Reagan was very fussy during the night and I suspected tummy pains. Sure enough, first thing this morning she had a huge dirty diaper and has been in good spirits ever since. She had both OT and PT today and did well for both. She even did an hour in her stander afterward. She's still feeling off though. Her little legs are still trembling here and there. Hands and feet have been cold and clammy. She's very easily startled. Any noise or even someones voice can scare her. Her moods are all over the place too. She goes from either being very serious where it's hard to get any response out of her...to laughing and smiling up a storm. She certainly did have some smiles for Grandma when she showed up this morning. Today we're calling her GrannyClaus. She had her car loaded to the top with presents and now they are all spilling out from under our tree (forgive the packages...she hasn't added her bows yet for fear they would get crushed). She always goes above and beyond and this year is no exception. Tonight Reagan has been a little spitty and choked on it a few times. Then out of no where she had two big throw ups back to back. Lots of white foam. After that she seemed to feel a little better. I am concerned about what all of this means for our next couple of days. I really want her to be in a decent mood for Christmas. Please keep her in your prayers!


Wednesday, December 22, 2010

Slightly off

Our first night with CPAP didn't go so smoothly. When Reagan fell asleep and Mike laid her in bed I proceeded to try to get her mask on. Not an easy task in the dark. She opened her eyes a few times but eventually fell back to sleep. She slept with it for maybe 45min when I heard her fussing. She had pushed it out of place and we could hear the air leaking out. I tried to fix it in hopes that she'd go back to sleep...but no such luck. I had to get up with her to calm her down (and take the CPAP off). She was up for 30 min or so before I got her to go back to sleep. It wasn't a deep sleep so I was afraid to try to put the mask back on. So that was the end of CPAP last night. She actually only slept til about 4:30 (that's when we heard her, she could have been up longer). She was content to just lay there in her bed awake, so we left her there til 7am. She started fussing a little so I put her in bed with me and she slept from 7:30-9am. So last night wasn't a great sleep night and probably not the best night to start CPAP. Reagan has been in a great mood most of today. Lots of laughing (sometimes almost too much laughing, which is sometimes a sign of her being a little "off"). Tonight we've seen some more signs of her being off. She's been gnashing her teeth together, her legs are trembling off and on, and she's made a few gaggy faces (and still crying for Daddy). All of this hints that we're heading down a path we do NOT want to go down...especially right now only days before Christmas. I'm definitely going to steer clear of the CPAP tonight, she's got enough on her plate right now. She might benefit from the oxygen on a night like this, but I'm thinking I probably shouldn't mess with her. We really need her to get as much sleep as she can right now and I think we're really going to have to work with her (during the day) to get her to tolerate the nasal cannula at night. So tonight I think I'm just going to let her be and hope for the best. Please keep it in your prayers that she gets some decent sleep and continues to have good days.

Tuesday, December 21, 2010

And the CPAP begins

Our trial run last night with the oxygen didn't go so well. I put the cannula on Reagan's nose after she fell asleep. There was immediate improvement of her O2 sats going from 97 without O2 to 99 with it. After 30min or so of sleep, it dropped to 98 but I think that's because the deeper the sleep, the more relaxed her breathing gets. About 1.5hrs after going to sleep, she woke up and was moving around. I went in there and although her eyes were still closed, she had already pulled the cannula out of her nose. I tried a few times to get it back in, but each time she'd just pull it out. So I gave up. I left the pulse ox on her toe just so I could check her sats if she woke again. She slept through til morning and at 7am we found her wide awake and all smiles (pulse ox kicked off and laying in her bed). That girl just does NOT like things that go up her nose! This morning we had our appt with the sleep doctor. She showed me the data from her first and second sleep studies. In the first one Reagan had ~5 apneas per hour, only went into REM sleep once (and it wasn't until she had been asleep for many hours), and she was either in stage 1 or 2 sleep most of the time (not very restful sleep). In the second sleep study (with the CPAP), she had only 1 apnea the entire time and I think it was during the time when the mask was off. She reached REM sleep much quicker and much more frequently (5-6 times) and also had mainly stage 3 sleep. So needless to say, all of this points to the CPAP really helping her quality of sleep. They want us to start her on CPAP now at home. We met with a representative from the CPAP company and she showed us how to use it and how to fit Reagan's mask to her. We did try another mask that just went over her nose, but go figure, she didn't like it being so close to her nose! Not to mention, I think it was too small because it was pressing on the top of her nose and making it hard for her to breathe. So for now we're sticking with the full face mask and if we decide we need something else in the future, they'll help us to find something. One interesting thing is...there's a tracking device in our machine so they can actually monitor it remotely to see how she's doing on it and relay that info back to her doctor! Pretty neat and scary at the same time! They will also be able to tell when she is and when she's not using it! So I guess I really have to give it my best to try to put it on her as often as possible (because they'll be watching). After our appt we rushed home for OT. Reagan did great and was really cooperating until the last minute when she started crying for no apparent reason. She recovered quickly but then was a little sleepy when PT arrived. She woke up about half way through PT and then she even did some time in her stander...no problem. She was in a great mood even laughing a little at the hampster holidays app on her ipad. Then tonight Mike got home and came up and started talking to her and the fat lip was back and she started crying up a storm. A few minutes later she had a dirty diaper, so we'll blame that one on the tummy pains. Later on she did it again and started crying when Mike spoke to her. Poor Daddy! She seems to be over sensitive tonight. Loud noises really seem to be bothering her. I'm not sure what that's all about. I hope she's able to get some sleep tonight...with or without the CPAP!

Monday, December 20, 2010

Oops (I did it again)

Well, I did it again. This time I really have no excuse. I had a good night's sleep the night before and I even woke up in the middle of the night thinking I needed to do it (but quickly thought I was just imagining things). I forgot to hook Reagan up to her feeding pump again last night. I made the formula, put it into a new bag, had it all assembled and ready to go...and then left it sitting on the kitchen table! I've done this once before...but I can't believe I did it AGAIN! And I even woke up in the middle of the night thinking I had forgotten...and then I talked myself out of it...that I remembered hooking her up and starting her pump (obviously I was remembering the night before). So she probably went a good 12hrs without anything (because her pump finished off it's dose last night around 8 and I didn't hook her up this morning til 8:30). Oh well. She doesn't seem to be any worse for wear. She did sleep the whole night through again, so that's great. We actually had to wake her up at 10:30am so she'd be awake and ready for speech at 11:15am. She woke stretching and smiling! Such a sweet girl! She did great for speech, her therapist did oral motor exercises and stretching with her and she tolerated it beautifully. Then she actually fell back asleep around 1pm and slept til 5pm (moving every now and then to fuss but going back to sleep)! No clue what that's about (sleeping in late AND taking a long nap)...definitely not her normal "good day" routine. She's been a real sweetheart again today with the exception of the big lip and tears multiple times when Daddy tried to pick her up or talk to her. Today's she's a Mama's girl! I have to enjoy it while it lasts! Tonight I'm going to get brave and try hooking Reagan up to oxygen. I finally found the tubing today so I'm out of excuses...we've got an appt with the sleep doctor tomorrow and I really need to be able to tell her something! Please say an extra prayer for her, that she's able to stay asleep even with that tubing up her nose!

Sunday, December 19, 2010

Another great day

Today has been another great day for Miss Reagan. She actually slept much better last night. As far as I can tell, she didn't wake up until this morning around 8am, and she was all smiles once again. She's been very active today, scooting down her mat and rolling all the way onto her tummy. She's not so great at getting back over though, I usually have to flip her back over so she can start the process all over again. She's still putting that left hand to her mouth but on good days (like today) she doesn't actually bite it. I'll catch her with her thumb or pointer finger in her mouth, I pull it out, she puts it right back in. She licks on it and maybe even chews it a little, but she doesn't chomp it like she does on her bad days. Hopefully tonight she'll get another good night's sleep and we'll have another great day tomorrow! (By the way...look at yesterdays pictures if you missed them!)

I just wanted to remind everyone again about the mitochondrial walkathon coming up the first Saturday in February. I sent out some emails (though the walkathon site) and I'm afraid many of them ended up in people's junk folders (it went into mine). If you want more information on how to join our team go back and read my post from last week here. If you live out of town or are unable to participate, please think about making a donation. Mitochondrial research is severely underfunded and if we want to save innocent children like Reagan, we desperately need to increase awareness and funding for this devastating disease.

Saturday, December 18, 2010

Such a sweet girl

Sleep last night wasn't exactly as we had hoped. We knew something was up when it took her over an hour to fall asleep after getting her clonidnine. She was very restless and kept popping back awake over and over again. After we finally got her asleep she did sleep straight through til 4:30am...but after that, she was awake. Now she was happy, but she was awake. I left her in her bed for another couple hours and finally around 7am the two of us got up for the morning. So much for sleeping in (although she did take a quick cat nap)! On a good note, she has been precious and sweet and absolutely wonderful all day long! She's been rolling like a maniac...both ways and even all the way over onto her tummy! She's been talking in her sweet little voice and just smiling up a storm. Such a sweetie. I love, love, love days like this with her! Now if only we can get her to sleep better AND continue with these good days! Keep that in your prayers!






Friday, December 17, 2010

Oh sweet sleep!

Reagan slept last night!! Can I get an AMEN!?!?! Seriously (thank you God)!! She actually slept through til about 10:15am...which for her (on these recovery days) is not that much sleep. She woke up all smiles. Big huge blue eyes smiling up at me...I was ecstatic! She's been super sweet all day today (and even a little talkative). Her vision teacher came today with the school OT and they both worked with her. She seemed to be quite attentive. The rest of the day she just hung out with our nurse, watching videos and playing with toys. She's been very active. I'm not sure if it's chorea or just movement...but it's a lot. Legs kicking around, rolling onto her side, and putting that left hand to her mouth nonstop, not necessarily to bite, but to lick. She's just now starting to pee again. Yesterday she was down to one diaper all day long. Today she's had three...still on the low end, but hopefully getting there. She also finally had a dirty diaper. It's been almost a week or so since she's had one of those. It was a doozy too. It leaked out all over the place. Tonight she started fussing for no apparent reason. Just a little, but it was the first time all day that I had even heard a peep out of her. Not sure what that's about. She doesn't seem to be fully recovered yet. I wonder if that's just because she had less recovery sleep than usual or if her previously predictable cycle is changing. Whatever it is, I just hope that we're in for a long stretch of good days. This morning while Reagan was still asleep we decided to hook her up to her pulse oximeter to check her O2 sats. When she was asleep her sats ranged from 94-96 (dipping as low as 92 a few times). When she woke up (but was still laying down), they increased and averaged 96-98. And after getting out of bed and while she was sitting in her chair, they were as high as 99. So based on all of that, I'm thinking maybe she really will benefit from having a little extra O2 at night. Now it's just a matter of trying it out. I think I may wait til we have at least one more night of good sleep before I start fooling with her during her sleep. Please continue to keep our sweet girl in your prayers.


Fast asleep and sucking on her tongue!

Thursday, December 16, 2010

Laughs but no sleep

Although Reagan was up again the entire night last night (never falling asleep even for a second), it was still better than the night before. For starters, I went to sleep for 2.5 glorious hours while Mike watched her. Then I got up and held her the rest of the night. That little bit of sleep made all the difference and helped me to keep my sanity during the wee hours of the morning. When I first took her from Mike she pulled a temper tantrum on me and cried, kicked and yelled at me for at least 30min straight. Then right when I was about to pull my hair out, she turned a corner and became very sweet and giggly. She was actually laughing her head off all night and most of the day today. The nausea seemed to be better, she still had some gagging here and there throughout the day (and she did have a couple small throw ups this afternoon), but overall it seemed a little better. She also seemed a little happier today (maybe it was all of the laughing)...although you could still see the sleep exhaustion on her face. Her PT came and worked with her today and so did her teacher and speech therapist. It's been a while since she's had therapy, so I'm glad they were able to come and work with her. I'm hoping today marks the turning point to what seems like an endless string of bad days. Tonight she fell asleep (on her own, without any clonidine) at 8pm and she's been out ever since. Something tells me she's going to sleep tonight and probably all day tomorrow. Poor girl...she needs it. Please keep it in your prayers that she's able to get some rest and recover from all of this and hopefully have some much needed good days.

Wednesday, December 15, 2010

Still bad

Last night was another horrible night. Reagan never really went to bed...and neither did I. She would fall asleep only to startle herself awake 10-30 seconds later. There were a few times that she fell asleep a little more soundly and I'd attempt to get up with her to take her to bed but she'd either wake up the second I got up or she'd wake up as soon as I tried to lay her in bed. We ended up spending the entire night in the living room again, sitting in the recliner. Most of the time Reagan was awake and VERY whiny (my patience was wearing very thin). There were times that she would doze off and I'd try to do the same, but our recliner is not all that comfortable and many times she'd wake before I could even fall asleep myself. Needless to say, it was a ridiculously long night and our nurse didn't come in til 11:30 this morning. Believe me, I was counting the seconds. Last night the nausea subsided a little (that's usually the case when she's whining or crying) but it picked back up this morning. Today she's gagged and retched a lot and had several pretty significant throw-ups. She had one this afternoon that was white (usually it's clear) and it came out of her mouth AND nose. Poor thing. It was horrible. We took her into the pediatrician's office, just to get her checked out...and her ears don't look great. They aren't horrible, but they aren't normal either. It's hard for the doctor to tell if it's getting better or worse at this point, so we're going to hold off on changing antibiotics and see if she gets better over the next day or so. I forgot to mention that there was a definite increase in her chorea (chaotic movements) yesterday and it continued all night and all day today. It's a struggle to even hold onto her when she's moving like this. She's just so uncomfortable and miserable...it's hard to watch. And she's so strong, you really have to fight with her to not only keep her in your lap but to keep that hand out of her mouth. She's swatted at her face so much that her cheeks, chin, and nose are red. She's also back to gnashing her teeth, which always makes me worry she's going to bite herself. I'm hoping we're almost done with these bad days. This has been going on for a while now and it's been getting worse and worse every day. She needs a break from this...we all need a break from this. Please keep her in your prayers.

Tuesday, December 14, 2010

Rough nights, rough days

Last night was a horrible night. Reagan was up and down and up and down the entire night. She'd go to sleep for 30min-1hr and then be back up again for 30min-1hr. Over and over again. It was exhausting. And when she was up...she was moaning and groaning. That can definitely wear on you in the middle of the night. Today she's continued to be very fussy and moany. Her face is turning red because she keeps rubbing it with her hand. Yesterday while we were giving her a bath, in one split second, she got her thumb into her mouth and chomped it. Right through the skin. And then to top it all off, this afternoon she's starting the gagging. No throw up so far, but she's no longer just making gaggy faces, she was actually retching. No fun. No fun at all. I was sure hoping she wasn't going to have to go through this again. I was hoping the increase in her nortriptyline would do the trick. I'm still hoping it will do the trick. We can still go up again, so we may do that over the next day or two. We actually finally got the oxygen in late last week but have yet to try it because Reagan's sleeping has been so erratic. I heard from the sleep doctor's office today and they said that the results of the sleep study did indicate that she would benefit from CPAP (her respiratory "events" were almost completely eliminated with it on). I'm just wondering is it worth it if she sleeps less because of it. I don't know...we have an appt with them next week to discuss it all. Today we went back in to the dermatologist so they could rub some more acid (or whatever it is) on the hairless spots on Reagan's head. So far I don't really see any new hair growth but supposedly we need to give it at least 2 months. We're also still dealing with nursing issues. Our nurse who had taken a leave of absence a few months ago is still MIA and we've never found a permanent replacement. We had one lady that filled in for 6 weeks and then found a new job working in our GI doc's office! The agency we go through has never been great at staffing so we're still really stuck in a bad place. Right now our other nurse has been working extra days to help us out! Another nurse was supposed to work tomorrow but the agency sent out a nurse who had knee replacement and was complaining about having to lift a kid 10lbs less than Reagan. Yeah, not gonna work. So now we're back to square one. We have one nurse and she's completely and totally overworked right now. She's going to come in tomorrow but not until later on in the day because she has her own stuff that she has to take care of. Talk about bad timing though because it's sure looking like tomorrow might be a really bad day. I have a feeling I'm going to be counting the seconds until she gets here! Please say some prayers for my little one tonight...she needs them!

Monday, December 13, 2010

Bad day

Last night wasn't great, but I guess it could have been worse. Reagan did sleep through til 3am, but she woke fussy and I had to get up with her. We were up til about 4:30 when she finally fell back to sleep. She woke an hour later fussing but thankfully settled down and went back to sleep. This morning she woke cranky (so much for smiles) and has been cranky ever since. She took several naps today...which is very unlike her (even on a bad day). Overall, she's just feeling crummy. She has a constant scowl on her face...eyebrows all wrinkled up. She has not been a happy camper. The last few days have been questionable but today has definitely been a "bad day". I've also seen her making a few gaggy faces here and there which really has me worried. I'm hoping the recent increase in her nortriptyline will prevent the onset of the nausea/vomting. Please keep her in your prayers.

This was one of our failed attempts at getting a Christmas pic (Saturday). Grandma thinks she has a "grinchy" look on her face!

Sunday, December 12, 2010

Mitochondrial walkathon and rocky day

I finally did it! I finished Reagan's webpage for the Energy for Life Walkathon the first Saturday in February. It wasn't easy, the website can be a little difficult to navigate, so I'm going to try to give detailed instructions so you will know exactly how to go about donating to our team Rallying for Reagan! First, click on this link to her webpage. Then, click on Join Team. This will take you to the registration page. Keep in mind, they want you to register each walker separately. Also, if you're registering multiple family members, you do not have to donate for each member (you can register without donating). You do have to fill out the entire registration in order to donate (I'm not crazy about this, since I know some people may not want to go through all of the trouble of doing this...but there is no other option). At the bottom of the registration page you can choose to be a walker or a "virtual walker" if you are unable to attend the event. We would certainly love to see everyone there but we know some of you will be busy and others live very far away, so we appreciate you supporting us in our efforts to raise awareness and funds towards mitochondrial research and a cure for Reagan!

Now on to today's post...
Today was another semi-rocky day for Reagan. She slept fairly well last night...Daddy had to get her back to sleep once and then this morning she woke at 6am (right after I left to take my mom to the airport). When I got back she was wide awake and smiley. She was good most of the morning, rolling back and forth, back and forth, watching her DVD player. As the day went on, the fussiness increased (there seems to be a pattern here). Her hands and feet are cold and clammy again which would lead me to believe we're either headed for bad days or we're already smack dab in the middle of them. Her cheeks and right ear have also been very red. Not sure if this means we should take a trip in to the pediatrician to get her checked out or not. Tonight Reagan has been very irritable, having big outbursts of crying with lots of tears. Hopefully she'll sleep tonight, because I don't know how long my patience will last staying up all night with little miss attitude! When Mike laid her down tonight, she immediately woke up and started fussing. Not a good sign. Please keep her in your prayers!

Saturday, December 11, 2010

A little fussy

Sleep went relatively well last night. Right after I laid Reagan down we had a little scare. I went in to hook her back up to her pump and she woke startled and almost sat up straight in her bed. Her eyes were wide open and I was afraid she was up for the night but I left her in there and eventually she settled down and went back to sleep. Thank goodness...we needed some sleep. This morning she woke at 6:30am...all smiles. I put her in bed with us but she was not going back to sleep. She just laid there with those big, smiling eyes. So cute. We should have dressed her up and taken pictures of her right then and there, but we didn't. We waited til later...and we waited too long. As the day went on, she got more and more fussy. She still seems to be having tummy pains, but who knows. We tried some pictures and they ended up being very sad and pathetic. So for the Christmas card, I actually went with a picture of her from Halloween. Oh well. At least it's a fairly current picture. Most of the day Reagan was a bit of a stinker. She did take a good nap this afternoon though, so maybe she was just cranky. Mike and I went out with our neighbor to a church Christmas production while Grandma spent some quality time at home with Reagan. Most of the night she was great...even holding and "playing" with some measuring cups (you usually can't get her to hold anything). She cranked up a bit the last 30min or so before we got home...but she seems fine now. I just hope she sleeps tonight!

Friday, December 10, 2010

Cutie

Reagan was a turkey last night. We put her to bed around 11pm and by 2am she was up. I changed her diaper and left her in her bed hoping she'd go back to sleep...it didn't happen. Every now and then we'd hear her make a noise, and while she seemed happy to just lay there, she didn't seem to want to go back to sleep. Finally around 5:30am I picked her up and put her in bed with us, where she proceeded to kick us and squirm around nonstop. Then at 6:40am I had to go to the airport to pick Grandma up! Needless to say, it wasn't a restful night's sleep for any of us. Reagan had three therapies today. She had speech (with her new speech therapist), then she had vision, and then she had OT. She had a couple crying meltdowns, but they were short-lived and we think brought on by gas pains. Poor girl, she's still having some tummy issues, but she's handled them a little better today. She's been smiley and we've even gotten a few laughs. Lots of "talking" today too. She's been a cutie. Today Grandma and I went Christmas shopping and tomorrow we're going to attempt to get a good Christmas picture of Reagan for our Christmas card (if we don't get one, then the Santa pic may be gracing the Christmas card this year). All in all it's been a fairly good day. Hopefully we'll all get some sleep tonight and have another good one tomorrow!

Thursday, December 9, 2010

Cranky pants

Reagan slept well last night. I think she woke sometime around 5am (Mike swears I was dreaming, but I remember her being awake) and I'm not positive that she ever went back to sleep. When we got up sometime after 7, she was just laying there in her bed wide awake. She was pretty good most of the morning (which is good since we didn't have a nurse today). A little feisty, wanting to be held nonstop, but nothing too bad. Then as the day went on, she got more and more fussy. She'd have these random outbursts of crying (usually followed by some gas). I figured it was tummy pains because it's been several days since her last dirty diaper. She had a little meltdown right before PT, but I took her outside to swing for a little while and that seemed to cheer her up. She was actually good through PT but did have a mini-meltdown during her session with her teacher/speech therapist. I kept waiting for the dirty diaper to come and finally it did...all over the place...it went all the way up her back! I had to change her entire outfit, sacrifice one of her blankets, and wipe her down with half a thing of wipes. She actually had another dirty diaper and lots of tears later in the night as well. I'm hoping she'll sleep well tonight and wake up a happy girl tomorrow. Grandma's coming in the in morning and will be super upset if her smiley girl isn't waiting for her.

Wednesday, December 8, 2010

Sleep study take two (with CPAP)

Reagan did finally wake up yesterday. At about 5:15pm she woke up smiling! She was still quite groggy but she was in a good mood. Although she wasn't gaggy, she was still making some gaggy faces and very spitty. I'm guessing because her throat was still sore from throwing up all day the day before (and she had a huge gash on the inside of her cheek where she obviously bit herself). For this sleep study we went to a different hospital. It's a newer branch of the first hospital we went to and oh so much nicer. The room we stayed in looked like an upscale hotel room. We were very impressed. Reagan was wide awake and rolling around as the technician put electrodes all over her and tried out several CPAP masks (although I still think there has got to be a better choice). The ones (that they had) that covered just the nose ended up hitting her right in the eye, so none of those were going to work. The next one we tried went just up her nose...I believe he called them nose pillows. It didn't look at all comfortable but the technician thought this was probably our best bet to try. So we waited until Reagan was completely wired up and then we gave her the clonidine and waited til she was asleep to put the CPAP on her. She was out cold, so it went pretty smoothly, and we were in bed by 10pm. Reagan was on the bigger temperpedic mattress and I slept on a little plastic mattress in the corner of the room. It was freezing in there! I kept telling them I was frozen, but they said they needed it to stay cool. Around 11pm Reagan started thrashing about. She never really opened her eyes but she swatted off the nose pillows and the technician came back into the room to put it back on her. This happened multiple times. Then finally when I heard her breathing through her mouth (because I kept hearing this whoosh of air), they decided to switch masks. The nose masks won't work if she's breathing through her mouth! So then he brought in the big face mask. It covered her whole face (eyes, nose, mouth). It looked kind of like a gas mask to me. She seemed to tolerate it a little better. Even when she swatted at her face, she wasn't able to get this one off. Around 2:30am she woke up, woke up. We had to take the mask off of her because she was freaking out a little with it on. I crawled into bed with her and tried to encourage her to go back to sleep. She rolled around for a while (hitting me in the face) but finally she settled down and went back to sleep. She slept through til 5:30am when the technician woke us up and started ripping electrodes off her head. Seriously, he didn't even use anything to help loosen them (or the tape holding them down). Reagan cringed a few times but she really was a trouper and fell asleep as soon as I picked her back up. She slept the whole drive home and then was wide awake once we got home (when I was ready to sleep). She only had two therapies today but conveniently fell asleep about 15min before each one! Overall she was still a little groggy today (who wasn't...we didn't get much sleep last night), but she was also very content and smiley. I'm not sure how all of this will work out with the CPAP. We have an appt in 2 weeks to go over the results with the sleep doctor, but it really didn't seem to help her sleep, if anything it bothered her enough to wake her up. Tomorrow we're supposed to have oxygen and a pulse ox delivered. I'm wondering if maybe she would benefit enough from just having the extra oxygen at night (and a nasal cannula is much less invasive than the CPAP). I guess we'll just have to wait and see. I'm looking forward to a good night's sleep in my own bed tonight!! Hopefully Reagan obliges.

Christmas cards

I still haven't decided what to do this year for Christmas cards. I know most people are already mailing them out, but we haven't had the time (or the good days) to get a decent picture of Reagan to put on them. Yes, I have regular Christmas cards I could send out, but they are just so much more personal and special when they have your child's picture on them. I particularly like the ones that are on card stock instead of photo paper, I think they just look so much nicer. So after reading several posts on other blogs about Shutterfly's promotion...do a blog post about Shutterfly and you get 50 free cards...I decided to go ahead and go for it. I mean, eventually we'll get a good picture, right? Shutterfly has a huge selection of Christmas cards and I'm sure I'll find several options I like. How about this one...
I also love the photobooks they have. Remember, we got the most beautiful book full of pictures of Reagan and scriptures from the Bible as a gift from our Bible study on her 3rd birthday. It seriously was one of the most meaningful, wonderful presents I have ever gotten. They also have neat calendars that you can make full of pictures. Several years ago I made a calendar for my mom with pictures of her beloved dog in it! She loved it! There are so many neat gift ideas! Click one of the links above or go to http://www.shutterfly.com/ for a full list of options!

Tuesday, December 7, 2010

Sleep and sleep study

Mike decided to watch Reagan from 10-12 last night and let me sleep (just in case Reagan was going to be up again all night). But Reagan did fall asleep. Mike said she was very restless and kept popping back up awake, so he put a weighted blanket on her and that seemed to help her settle down and go to sleep. And boy did she sleep. She's slept the whole day, actually. She had an appt scheduled this morning with the mitochondrial doctor. It was an appt scheduled 6 months ago (as a 6mo follow-up) but we ended up going in sooner than that and just never canceled this appt. Well, I figured we'd go and let her know of our frustration (with the continuing nausea/not sleeping). She listened but I admit she was a little defensive. I'm afraid that maybe I just expect too much out of doctors. I expect them to not only want to help my daughter but I also expect them to take actions to actually do just that! I don't know. Maybe I'm asking too much. I can tell you, since Reagan's diagnosis with seizures (and her subsequent diagnosis with mitochondrial disease), I have lost all faith in doctors. The majority of the time I'm the one making the decisions and suggestions...which medication to try, what tests to run, etc...it's ridiculous! And I can't even tell you how many other kids that I have diagnosed with Infantile Spasms or Mitochondrial disorder. It's ridiculous! What are these doctors doing?? I'm obviously still a bit irritated. Enough said on that. So tonight we're going to do another sleep study. Yes, I said that right, we're going to take our already sleeping child in for another sleep study (so they can figure out what settings to try with CPAP). I was concerned that maybe we shouldn't do it tonight, since this is not her normal sleep pattern and this is a much heavier sleep than normal. But her sleep doctor said it's a good time since we know for sure she'll have a good night's sleep and they should be able to get plenty of data. So that's that. We have to be there between 7-8pm tonight and they'll release us around 6am tomorrow morning. I'm not looking forward to it, but at least I got a good night's sleep last night and hopefully Reagan will sleep well tonight despite all of the junk attached to her face! Thank you all so much for your prayers. I'm looking forward to the good days to come (once she wakes up)!

Monday, December 6, 2010

The night that never was

Last night was the night that never was. Let me explain. In all the sleepless night's we've had, I've never had a night where I didn't even attempt to crawl in bed not even one time. That was last night. Reagan never fell asleep after her clonidine. She closed her eyes for a few seconds and that was it. I tried to lay her down in her bed slightly drowsy, but she just went ballistic and became super agitated and awake. So I picked her right back up and we sat in the living room the entire night...wide awake. There was one moment where she did fall asleep for maybe 30min on my lap, but the second I moved a centimeter (because she was pinching a nerve in my leg) she woke up and was back to her crazy, nonstop moving, crying self. She had periods where she'd freak out...kicking and screaming bloody murder. It looked very similar to a temper tantrum but I'm guessing it wasn't voluntary. Then she'd have times where she was fairly mellowed out. Overall she was very gaggy/retchy but she only actually threw up something once. By the time morning rolled around I was exhausted. My whole body ached...from sitting in a chair all night long, from holding her on my lap all night long, and from just complete and utter exhaustion. I was counting the minutes until the nurse got here but even then I still had to make sure Reagan got all of her meds before I went to sleep. I only slept for an hour and a half or so and then another couple hours later, but I'm still beyond tired. I can't even imagine how wore out Reagan must be (despite it all we've actually seen a few smiles today...the first in days). She only took one other 30min nap today and her nausea has turned into outright vomiting as the day has gone on. Now she's actually throwing up stuff and it's pretty frequent. It's painful to watch. I remember last night when I was up with her there was a Pampers commercial on TV. It showed baby after baby fast asleep while playing the song Silent Night. It made me cry. My poor child can't even SLEEP for the love of God! It's so frustrating! I hope and pray that tonight is different. That she's able to get some relief from the nausea and vomiting tonight and that her poor little body is finally able to get some rest. I'm not confident it will happen tonight but it sure would be nice. Please keep that in your prayers...

Santa picture from last Thursday (I had to take a picture of a picture!)

Sunday, December 5, 2010

Miserable girl

Last night was a rough one. Reagan only slept for 30 min or so after getting her clonidine and then she was up...for the night. She was very agitated and super tense. Her little legs tremble, she's so tense. Lots of chorea...she'll have bursts of it where she almost runs in place, she's kicking around so much. And her little feet and hands are like sweaty icicles. It made for a very long night for us all. She kept snapping her teeth together like a snapping turtle and one time she did get her finger. Poor thing. I just don't know what we're going to do with her. I'm afraid she's going to do some serious damage. She's already got this weird red mark on her wrist. We have no clue what it's from. We first saw it Tues afternoon and just assumed it was some sort of little cut (maybe from her fingernails)...but now it's gotten wider and more reddish purple and looks more like a burn. No clue. The retching and the nausea has gotten worse as well. Lots of gagging but no real throw up until tonight when I gave her the Zegerid through her g-button (5min later). I knew that wasn't going to work out with her! Tomorrow I'm going to call and see about switching her over to a new med. We just can't give her medicine that she needs through her g-tube...on her nauseous days it will just come right back up! She's been very burpy and having these HUGE retches where it sounds like she might bring up a lung. Very painful to witness. And of course, there's not a darn thing we can do for her. We just feel SO helpless. It's definitely getting us down. I'm afraid tonight is going to be another miserable one and tomorrow probably won't be much better. Please say some extra prayers for our miserable little girl!

Saturday, December 4, 2010

Bad days

Ugh. Where to begin. Last night wasn't as bad as I had thought. Reagan woke up an hour or so after falling asleep but Daddy went in there and eventually got her back to sleep. She woke once or twice more but she went back to sleep on her own. We were lucky. I actually think she got more sleep last night than the night before. Unfortunately the day did not follow suit. She's been even more tense and upset today than yesterday. She's been moaning and groaning pretty much all day long (with the occasional cry mixed in). Her hands and feet are so cold and clammy (almost soaking wet) and her body is hot, hot, hot. Tonight she started up with some nausea/retching. No actual throw up...but I think I know where this is headed. I really hate that it's looking like she's going right back into her previous cycle of good/bad days. Hate it. I'm also concerned that we're back to no sleep again. Ugh. When she has good days...they're SO good. But when she has bad days...they are SO bad. Please say some extra prayers for her. We may be in for a rough few days.

Friday, December 3, 2010

Not feeling well

Reagan woke up quite a few times last night, each time she'd cry out and move around a bit and then go back to sleep. Definitely not a restful night's sleep for any of us. Based on that and the not so happy mood she woke up in this morning, I decided to cancel her sleep study for tonight. I just didn't want to put her through all of that and end up with her not sleeping! I think it's better we do the sleep study at the beginning of her good streak rather than the end. It turned out to be a good decision because she's just gotten more and more fussy as the day has gone on. Most of the day she was sporting the pouty face (it's a good thing we went to see Santa yesterday). She's been very tense and upset. Arms tensed up and bent, eyes squinted (very sensitive to sights and sounds)...just all around not good. The only real happy time for her today was when she took a bath with Grandma. She seemed to relax a little and we even heard a few laughs. Overall it's been a rough day for our little one. She's just not feeling well. I don't know if it's her tummy (she did have another dirty diaper today)...but she wants to be held nonstop and even then she's very moany and groany. I have a feeling we're in for a looooooong night. Please keep her in your prayers!

Thursday, December 2, 2010

Santa

Reagan slept in a little this morning...she didn't wake up until around 9:30 (with me urging her). We were planning on going to see Santa first thing, so we were a little worried she wasn't going to wake up in time. She wasn't super smiley this morning, she actually made some pouty faces and at first I thought we might be in for a bad day...but she pulled through and was an angel for Santa. We've seen prettier Santas and Reagan's head was tilted to the side (as always) but other than that, it was probably her best Santa picture yet. Her eyes were open AND she was smiling! What more could you want?!?! After her pictures, we rushed home for OT. She was doing a great job for the first half or so and then started to tire out and was a little droopy for the second half. As soon as she finished that it was off to the Physical Medicine and Rehabilitation doctor (PM&R). Reagan slept most of the way there and through most of the appointment. Of course her hips didn't pop even once so the doctor is not really worried about it. It was a pretty uneventful appt, actually we probably could have done most of it over the phone, which makes me mad because she missed both PT and her teacher because of it. This afternoon Reagan was a little bit on edge. She got pouty and started crying and then had a big, dirty diaper. She actually had two today, which is very unlike her. I'm thinking the new reflux med (Zegerid) is messing with her tummy a little because she's also been getting hiccups a lot again and having some awful smelling gas. I guess we'll just have to give it another couple days to see if we're going to stick with it or not. She's also got this horrible redness on her chin/cheek from rubbing at her face with her hand. I thought it was a rash but today it was obvious that it's actually chaffed. Poor thing. She's rubbing her face raw! Tomorrow night is supposed to be her second sleep study but I think we're going to have to wait and see how she sleeps tonight and how she acts tomorrow because today she's been a little on edge and I'm afraid we might be heading toward another bad streak (I sure hope I'm wrong). She fell asleep on me tonight and kept waking over and over again with big startles and scared looks on her face. Not good. Please keep her in your prayers. I really want her to make it another month (or longer) without any more bad/throw up days! Lots of prayers needed!

Keep in mind...neither of these are Reagan's actual Santa picture. These are just ones my mom tried to snap from the side. If I can get the real one scanned in I'll try to post it tomorrow!

Wednesday, December 1, 2010

Lots to do

Reagan has been a complete doll again today. Last night she slept like a rock again last night. She woke up this morning all smiles and has been smiling ever since. We were a little concerned this morning when we gave her the am dose of Zegerid (through her g-tube...not j-tube). She was acting a little gaggy and then all of a sudden gave the pouty lip and was about to cry! I don't know if the tears were related to the medicine (and any stomach upset) or if she just wanted some attention, but I gave her a few hugs and she was back to smiling again. This morning her vision teacher and the school OT came out and worked with her. It's so nice for her to have therapies on days like this when she's so engaging. Unfortunately her teacher canceled so we'll have to see if she's able to make it out tomorrow. The rest of the afternoon was spent just playing around...laughing and smiling nonstop! She's just so precious. This morning I went and checked out the Santa at our mall. It looks like early morning is the best time for us to go right now...there was someone checking out but not a single other person waiting. Grandma is going to fly in early tomorrow morning so that we can be first in line to see Santa tomorrow. It's not easy getting a good picture at one of these things. Wish us luck. We've also got Reagan's sleep study (with the CPAP) scheduled for this Friday. I thought about canceling it because Grandma will be here, but we'll only be gone from 7pm-6am the next morning, so I figured if Reagan's in a good mood (and sleeping well), we'll just take advantage of it. If not, then we'll cancel. Tomorrow we've got an appt with the Physical Medicine and Rehabilitation (PM&R) doctor. We need to talk to her about Reagan's constant popping in her hips and her head tilt to the left. I also think she might be close to out growing her AFOs so we may need a prescription for that as well. Lots to do. Lots to do.

Tuesday, November 30, 2010

Super smiley

Reagan has been a sweetie again today. She slept well last night...like a log. I don't know if she moved all night. She didn't wake up this morning til 7:30am. She's been a complete joy all day. Super smiley, super sweet. She was so great during our three hour wait at her doctors appt. Yep, that's right...it was three hours until we finally saw the doctor. And after the wait he didn't even have much to say. He was glad to hear that the nortriptyline seemed to be working. He seems to think the bad episode we saw last week might have been triggered by her ear infection. Maybe. He also thinks we have a way to go up in the dosage, if needed. We decided to give a new reflux med a try. We're going to "try" Zegerid. I say "try" because we're going to have to give it through her g-tube (because it works by neutralizing stomach acid) but I'm not exactly sure how smart that is. Reagan hasn't really had anything in her stomach since last year, so we'll have to see if she tolerates it. If not, then we'll just go with another med. We're also going to schedule a swallow study so we can check to see if/how she's tolerating oral feeds. It's been a year since she was fed by mouth so we just need to make sure she's not at an increased risk of aspiration. Then we came home and her PT was waiting at our front door for us! Who would have guessed it would take us til 2:30pm to get home from a 10am appt!!! Reagan did great and was all smiles for her as well. After PT she was in her stander for an hour without even a peep. She's been super energetic and alert tonight. She's rolling all over the floor, laughing, and smiling up a storm (and of course licking on her hand). It's so nice to see her happy. I can't get enough of these good days. Please continue to keep her in your prayers!

Monday, November 29, 2010

Still good

Reagan slept well again last night (and so did we). She woke this morning with smiles. Got to love that. She's been sweet and smiley all day today. No therapies or anything, just taking it easy. This afternoon we took her for a walk in her new jogging stroller...we had to get out now before it gets cold again tomorrow. Today it was warm and muggy. I prefer the cold. It just doesn't feel like Christmas when it's hot outside. Tomorrow morning we have an appt with GI. I mapped out the last month to try to figure out what could have triggered another bad episode. We did start increasing Reagan's feeding rate (ie fluid intake) on the same day we started the nortriptyline. And then right around the time we saw her beginning to get gaggy again, we upped her rate from 46 to 48ml/hr. I'm not sure if any of this has anything to do with anything...but it's worth noting. I'm hoping he may have some insight into this. I'm also hoping he'll be on board with switching her reflux medication. We really don't think it's working anymore. Should be an interesting appt. Here's to more good days!

Sunday, November 28, 2010

Better days

Reagan was asleep last night by midnight and slept through til 5:30am. I heard her moving around so I got up and made sure she was OK (and that she couldn't get to her hand) and then I laid back in bed. I woke up an hour later and she was asleep again. She woke up for good just before 8am and was all smiles. She had a wet diaper when I picked her up and she another shortly after. Definitely a good start to her day (wet diapers have been very hard to come by lately). She's been in good spirits all day today. Very sweet. A little groggy...she took two naps today which is out of character for her. When she woke up this morning she was still moving her tongue around a lot like yesterday but as the day went on she didn't do it as much. Not really gaggy at all, although she did almost choke on some spit (even though she hasn't been that spitty today). All in all, it's been a pretty good day. We could use some more days like this. Mike spent most of the day putting up Christmas lights on our house. It looks really pretty...not quite a Griswold Family Christmas...better I think. He managed to do it all without any major injuries although he did cut his finger and probably will be too sore to walk tomorrow. I'm about 3/4 finished with the tree but the house is a mess. We've got boxes everywhere and none of the inside decorations are really in place yet. That will be my job this week (in between doctors appts). We don't have anything scheduled for tomorrow though so maybe I'll be able to get organized...although it probably won't happen until my mom gets here later in the week. We've been in our house for over a year now and still have a spare bedroom/office that is filled with paperwork, boxes, extra furniture and pictures! Eventually we'll get to that...in our spare time...right?

Saturday, November 27, 2010

Sleep at last

Our girl finally slept! Thank you God. Seriously! Last night when Mike laid her down in bed, you could just tell, she was more asleep than she had been in days. It was a hard sleep. A good sleep. She actually slept through the night and didn't wake up til 3pm today. She woke with smiles...talk about relief. She wasn't overly happy...just enough to know she felt better. She was having some issues choking on her spit and moving her tongue around a lot (I'm guessing her throat is probably sore after throwing up so much), but over all she didn't really seem to be nauseous anymore (another thank God). She was only awake for a couple hours (if that) before she fell back asleep again. She's got days of missed sleep to catch up on. She did wake back up at 9pm so hopefully we can get her to go back to sleep sometime before midnight. We are having some continuing issues with her peeing. Even though we've increased her fluid intake (from 800 to 1000mls a day), when she has a "bad" streak, everything shuts down and that includes peeing. The day before yesterday (and the day before that) she only had 3 wet diapers. Yesterday she only had one (with two doses of lasix). Today she had two...the first one we had to put some warm water on her hand in order to get her to go (thank goodness that worked) and the second with the help of lasix. Problem is, she tends to not go when she's sleeping. So when she sleeps the whole day...well, she just doesn't want to go. Hopefully everything will get back on track tomorrow. It sure will be nice to have our happy girl back again. Please keep it in your prayers that she's back to her happy healthy self by tomorrow!

Friday, November 26, 2010

Another rough day

The nausea seemed to lessen a little as the night went on...but unfortunately sleep never came. After getting her sleep medication, Reagan never even fell asleep for a second (bad sign). So Mike and I took turns again staying up with her in 2hr shifts. Last night the chorea really picked up and she'd have these bursts of it where she seemed to be going crazy...she's scream and cry, all the while kicking her legs nonstop like she was running and using her super human strength to try to get her hand into her mouth. She was still gagging here and there but nothing was coming up...so that's a slight improvement. She dozed off a couple times while I was holding her but the second I tried to move an inch, she woke up flailing. Night's like these are so tough. It's hard enough staying up with a happy child multiple nights in a row, but staying up with crazy fussy child really wears on your patience. This morning Reagan's mood changed and she was happy, laughing Reagan again. She was still nauseous but not as bad as yesterday. But as the day went on, the nausea worsened once again. The laughing stopped and we had one miserable girl on our hands. She was making nonstop gagging faces and constantly choking on her spit and gagging. Just horrible. Poor thing. I feel like I can't take another second (much less another day) watching her suffer like this. And despite being completely and totally sleep deprived, she never even once dozed off today. Her poor little body must be beyond exhausted. Right now she's sitting on her Daddy's lap and for the first time today she actually looks sleepy. She'll nod off for a second and then jolt herself back awake. Hopefully she'll finally get some rest tonight and wake tomorrow a new girl (with NO nausea). Please keep that in your prayers.

Thursday, November 25, 2010

Sometimes it's hard to be thankful

Today is not the happy Thanksgiving I wanted for Reagan. It's actually been more like a bad dream. It all started yesterday afternoon with the gagging (although we think she probably started heading in this direction a few days ago). Last night she couldn't sleep at all and the gagging and retching was just as it was before...horrible. And yes, she also threw up. Thus marking the end of her 28day throw up free streak. Let's just say it was a very rough night. And not only is the nausea back but she's shaky, clammy, having chorea, restless, unable to stay asleep, gnashing her teeth, biting the inside of her cheek and trying to bite her hand. I don't know where all of this came from...it's literally been a month since we've seen a "bad streak" like this. I really don't think it had anything to do with changing out her tube, because we were already seeing some issues with her before yesterday. It makes me second guess whether the medication was really helping or not. it makes me second guess everything. I don't know what to think anymore. It's just so frustrating. And of all the days for this to start back up! And don't get me wrong...I know we still have so much to be thankful for...but on days like these it's hard to focus on the positive. All we want to do is help her and there's nothing we can do. Half the time it seems she's just choking on excess spit pooling in her mouth...but I'm sure she's got the excess spit in her mouth because she's nauseous. It's a vicious cycle and so far today we've seen no end in sight. She's also been doing a weird startle-looking thing where she'll put her arms out to the side and take a deep breath in...looks a little seizure-ish but I'm just hoping it's another one of those neurological quirks or chorea that's just triggered when she's not feeling well. Despite it all, the nonstop gagging and retching, the lack of sleep, despite it all, my precious little girl has managed to put on a happy face (today anyway, not last night) and has been laughing and smiling all day long...in between pukes. I'm really hoping that tonight she's going to actually sleep and she'll wake tomorrow feeling loads better. She needs that. We need that. Could you please keep all of this in your prayers?

Wednesday, November 24, 2010

New gj tube (and a side of gagging)

Reagan was a stinker last night. I think she slept til 3:30am...that's when she woke me up anyway. But from then on she was up. She dozed off a couple times in my arms but no longer than 10min and most of the time she was either fussing or crying big time. Lots of fighting her to keep that hand out of her mouth. The hand biting continues to be a constant challenge. The second you let go of her hand, it immediately goes back up to her mouth to bite. Even with a glove on, she still tries (and succeeds at times) biting her fingers. It was not a fun night at all. Today she's been a little better. Fussy here and there but no real crying per se. She even did well with getting her new gj tube. They let me take her back and put her on the x-ray table but then they made me go sit outside. She did well though and they were all impressed with her pristine gj-site (we get that a lot...I guess that's because they see a lot of bad ones). Then we came home and just hung out. Put Reagan on her swing outside, we have to take advantage of that before it gets too cold again (today was quite warm and muggy). There were no smiles today but we did get the occasional pathetic laugh (if you can call it that). She's also got the cold clammy hands and feet again. Not sure if that's related to her fighting the ear infection or what...but her body is warm or even hot and her extremities are all ice cold. Then this afternoon she started gagging. Not just making gaggy faces (which she's also doing)...she actually coughed and choked as if she were going to throw up. She did this a lot over several hours and each time I heard her do it, my heart sank. I felt like I was going to throw up. I know she was probably just doing it because they changed out her gj-tube today...the last time they changed it, they put contrast through her g-tube (which we never put anything in) and she threw it all up later that night...but it still makes me nervous (we drained quite a bit of fluid out of her g but nothing that looked like contrast). We're 28days now throw-up free. I SO do not want to go back down that road again. So tonight I'm posting early and asking for several prayers for our little one. That she'll get over this ear infection and be back to her happy healthy self by tomorrow, that she'll get over this nausea and continue her throw-up free streak, and that she'll finally be able to get some sleep tonight!!! Thank you for keeping her in your prayers...

Tuesday, November 23, 2010

Ear infection

Reagan did not sleep well last night. About an hour or so after we put her down, I saw her moving around. I got up (with the intentions of picking her up) but when I went and looked at her, she was still half asleep. So I went and laid back down. I woke up many times to look at her. She would wake up, move around, and then go back to sleep. Over and over and over again. Finally at 5:45am she was done trying to sleep so I picked her up and the crying began. She cried for about an hour and then Mike put her in bed with him where she fussed and slept off and on for another hour or so. This morning we took her in to see the pediatrician and she confirmed my suspicions, she does have an ear infection in her left ear. It's not a horrible infection, but for some reason as soon as Reagan's ears even start to get red (and she's got some fluid in it too), she immediately gets very irritable. She's been very fussy and has cried a lot today. It wasn't really until this afternoon that she finally started to settle down a bit, but that was with constant entertainment and stimulation. The second her PT paused to get another toy...she'd get fussy and almost cry! This girl is certainly a handful! Hopefully by Thanksgiving (with the help of a new antibiotic)...she'll be back to her normal self! Please continue to keep her your prayers!

Monday, November 22, 2010

Not feeling well

Sleep was good last night. I actually don't remember waking up at all til 7am this morning and then Reagan woke around 8am. She woke up in a decent mood. Most of the day she was fairly content...just a little high maintenance with whining here and there. Then this afternoon she started full out crying and had lots of gas and a dirty diaper that followed. She took a good nap and woke up still on the irritable side. Tonight she was really hating on the Mommy again. I held her...lots of crying. Mike held her...sad, pathetic smiles. She's trying to bite her hand nonstop. She pretty much wears a mitten on her left hand all the time now. The way she chews on and bites at her hand...you would without a doubt think she's teething. She's still pretty spitty. Definitely making some gaggy faces today (that scares me...we definitely need prayers in that area). Her cries sure do sound like she's in pain though. If she's still fussy tomorrow, we may be taking a trip in to the pediatrician's office. We were supposed to go in and have her gj-tube changed out tomorrow but they called to say that they had to order her tube and just to make sure it's in, maybe we should wait til Wed to have it changed. It's still leaking like crazy, so I sure hope having it changed out will help. Please keep her in your prayers...you can tell that she's just not feeling quite right.

Sunday, November 21, 2010

No more smiles

Reagan woke up this morning around 5am...we put her in our bed and she fell back to sleep...so we moved her back to her bed where she slept til after 9:30am! She's been a little on edge today. Not a lot of crying, but a lot of "about to cry"s. We've seen the big bottom lip a lot. Not one single smile. Tonight she's definitely preferring Daddy to Mommy, but she's not really happy with either of us. I'm not sure what's going on with her. She's still very spitty and almost choked on it a few times today. She goes from being very tense and stiff to being very loose and floppy. She took a nap this afternoon and I had to hold her arms down because she just couldn't stay still and get comfortable. She has had some gas (during periods of crying)...so maybe it's her tummy bothering her. I hope she gets over it quickly. I really want her to have a good week. It would be nice to have her happy and smiley for Thanksgiving this year. Ugh. Last year's Thanksgiving was such a mess. We had it at our house and I spent the majority of the day in a back bedroom trying to feed her 1ml of pedialyte every 2 min through an ng tube, in an attempt to rehydrate her and keep her from throwing it up (we didn't have a pump at that time). It was not a good day. I'm hoping this year we'll have a nice, relaxing Thanksgiving. Please keep it in your prayers that she gets over whatever this is and is back to her sweet, smiley self very soon!

Saturday, November 20, 2010

Good (spitty) days

I woke up at 5am this morning only to find my little princess wide awake and squirming around (with no covers, of course). I changed her diaper, covered her up, and laid back down hoping she might go back to sleep. She didn't though. She just laid there, moving around. Occasionally we'd hear a happy squeal out of her. Finally at 7am I decided to just go ahead and get up with her. She's been very sweet again today. She's also been super spitty. She's at a constant drip right now and we have to keep her on her side to help it drip out (or she chokes on it). Tonight she almost gagged on it, which really worried me (she's been 24 days without throwing up...an all time record since this all started). I really think it's all reflux related. Reagan's feeding therapist always told us that excess spit like that is often caused by uncontrolled reflux. She also gets hiccups a lot, which is another sign of reflux. I think we need to talk to her GI doc about either increasing her nexium dose or trying something else. Also on the GI front...Tues we're going to take her in and get her gj tube replaced. It's been 4months and it's been leaking a lot lately and it's also turning past the lock position...I guess it's just time to get a new one. Usually they don't let me go back and watch but the last time they did and I was very relieved to see that it didn't seem to bother Reagan in the least. She really has been such a good girl lately. It's so nice to have these good days with her...they were long overdue! Thank you all for your continued prayers!! They're working!

Friday, November 19, 2010

Follow-up with the sleep doctor

Reagan slept again last night! Yeah! But she did kick off all of her covers, so she must have been awake at some point. She's been a sweetie again today. She had OT this morning and was very alert and had good head control. This afternoon she had a follow up appt with the sleep doctor/pulmonologist. She looked more closely at Reagan's sleep study and said that she has what she would consider moderate sleep apnea and that it does in fact need to be treated. She agrees that it's worth giving CPAP a try. We'll have to do another sleep study (yuck) and this time they'll do it with the CPAP in place so they can figure out what setting she'll need on it. We're not sure yet whether or not she'll have to wear the full face mask or the one that just covers the nose. She does have the tendency to breathe through her mouth at times (I've always been a mouth breather) so we just have to keep an eye on her to see what she does on a regular basis. Of course...we don't even know if she'll tolerate having anything that bulky on her nose/mouth...but we'll see. The doctor definitely thinks that the apnea HAS to be affecting her sleep and if we can get her to tolerate the CPAP we may see huge improvements. In the meantime the doctor is going to order a pulse ox and oxygen for us to try out. She thinks that Reagan may benefit from having some extra oxygen during the night. Many kids with mito wear nasal cannula with supplemental oxygen...but I never really new why. According to her they just seem to do better with that little bit of extra oxygen (in Reagan's case it may help her sleep better, it should increase her seizure threshold...making it less likely for her to have a seizure, and it may even give her more strength and energy and end these crazy cycles of no sleep vs. nonstop sleeping). For now we're just going to try it out at night but she said if we see great improvements at night, it might be worth trying through the day as well. I have mixed emotions about all of this. I'm not thrilled about adding yet another piece of equipment to our arsenal and seeing my baby hooked up to yet another thing...but I'm excited at the possibility of this actually helping her. I don't know. I guess we will just have to wait and see. While we were there Reagan had a few bouts of chorea. The kind that comes in spurts...where she'll be fine one second and then moving her arms and legs around like crazy for 5-10 seconds. We haven't seen her do that in a while. Probably not since her last cycle of bad days (almost 3 weeks ago). I'm not sure what that's about. Her cheeks also got really flushed. Then we came home and she passed out cold. Poor thing. I wish she could tell us what's going on with her...that would make all of our lives so much easier! She woke up after an hour or two and was raring to go again. Lots of energy and some increased tone along with it...maybe that's why her head control was better today. I'm hoping for another good night's sleep tonight...please continue to keep her in your prayers!

Thursday, November 18, 2010

Dreaming

So Reagan did eventually wake up last night. She was surprisingly alert and I had doubts about her going back to sleep. But after a dose of clonidine and melatonin, she was snoozing away. She slept through til 6:30am. I woke around 4am and saw her moving around but she never fully woke up until later. I woke up this morning feeling almost giddy. I had another one of those wonderful dreams. I won't go into too much detail (because you know how some things don't make a lot of sense in your dreams) but I was sitting with Reagan and asking her questions and to my surprise...she started answering me!! At first I thought it was a fluke, because she said dog and I've actually heard her say dog before...but then I asked her several more questions and she kept saying new things each time! It was amazing. I was so excited. And even after waking up and realizing that it was just a dream, I was still so excited. Just the idea that maybe she really does understand what we are saying to her...maybe she really is taking in more than we know...it was an amazing feeling! Ahhh, it's the little things (things most people take for granted), that would not only make our day but make our LIFE! Seriously. Reagan had another good day today. She took a little nap before OT, but most of the day she was awake and alert. She has been making some gaggy faces the last few days, so today I decided to go ahead and up her dose of nortriptyline. Now she's taking it 3x a day. We'll have to see how that goes. In the past I haven't been the best about remembering the middle of the day doses, but I'll try. Anything to stay away from nausea. Reagan had OT, PT, and "school" all back to back to back and did great with all of them. Then this afternoon we took her for another walk with her in her new jogging stroller. I can't believe we waited so long to buy one of these things...Reagan really seems to be enjoying these walks. Grandma came in early this week (she has to make up for not coming next weekend...she's going to stay in Dallas with my sister) and today she finally got to spend some time with Reagan. She even watched her while we went to Bible study. Reagan does love her Grandma! All in all it's been another good day. Hopefully we'll have another good night tonight.

Wednesday, November 17, 2010

Sleeping beauty

Reagan slept last night!!! And today...ALL day. We tried to no avail, we just couldn't wake her up. We talked to her, sang to her, rubbed her face, grabbed her hands, changed multiple diapers (with the help of Lasix)...but she would NOT wake up. Thank goodness she has that feeding tube, otherwise we'd be in serious trouble! I'm not sure why she does this. I'm guessing it's the mitochondrial disease. She's awake and alert for days on end...not sleeping well or at all at times...and I guess that just takes a toll on her little body. She exhausts herself and the only way for her to recover is to sleep...a lot. I guess that's it. It does worry me though. It seems she's doing this more often lately. I don't know if that means things are getting worse with the disease or what. She does look precious though. Perfect. Like a little angel. Pink cheeks. Sleeping away. Stretching every now and then. Even the occasional smile when we talk to her. She's a little sleeping beauty. Please keep her in your prayers...that she wakes up and has a happy, healthy awake day tomorrow (not tonight though)!!
**Update-She did finally wake up at 8:15pm...wide-eyed and raring to go. Hopefully she settles down so that we can all get some rest tonight!**






Grandma put the bow in her hair...she thought she looked like Cindy Lou Who!

Tuesday, November 16, 2010

Alopecia Areata??

Reagan was a real turkey last night. She was awake most of the night...laughing and talking up a storm. I laid in bed with her a few times but I just couldn't get her to go back to sleep. Despite the lack of sleep, she's actually been in a great mood today. She did make a couple coughing/gagging noises this morning that had me really worried, but she managed to snap out of it. We had another early doctors appt this morning...this time Dermatology. This appt wasn't as timely as yesterday's appt. First we saw a resident and then we saw the attending along with a whole ton of med students. They all seem to think the same thing...Reagan does NOT have ringworm (although they can't be 100% certain until they check the culture in another couple weeks). Instead she has something called alopecia areata (basically hair loss in small areas...usually round or oval shaped)...it's kind of an autoimmune reaction. The red bumps she had before have now faded to pink spots that now have no hair on them (I'll have to post pictures tomorrow). The doctor says that this is not related to any of Reagan's other diagnoses (she just falls into another lucky tiny percentage of people that get this for no particular reason), although I have seen some evidence online that it might occur more often in people with mito. There were two options for treatment...steriod injections at the site (ouch!) or a topical solution that we come in and they apply it monthly. We chose the second (less painful) option. Hopefully this helps it grow back. Unfortunately there's no way to really prevent it from happening in other areas, so we just have to hope that this is it. After the doctors appt, we came home and Reagan had both OT and PT. She did great for both. Her head control was very good today and both therapists were super impressed. Her happy attitude continued all day and into the night...I just hope she is able to wind down and get some sleep tonight. We're all a little sleep deprived right now!

Monday, November 15, 2010

ENT appt

Reagan gave us some trouble again in the sleep department last night. She was up at 1am (Mike got up with her) and then again at 4am (I got up with her). At 7:15am we took her out of bed to go to her doctors appt and she woke up the second we put her in her carseat. She was a little stunned and kept looking at me with big, scared eyes but she never freaked out. We had an 8am appt and let me tell you...this was the quickest appt we've ever had. We were taken back quickly, the doctor came in quickly, and we were out of there in less than 30min! Maybe 8am appts aren't so bad after all? The ENT said she's got medium sized tonsils (they're not tiny and they're not huge). While he thinks removing them would give her some improvement in her breathing, he can't guarantee that it will be significant improvement and he thinks a trial of CPAP might be worth trying before going the surgery route. I have to agree. I'm not thrilled with the idea of any more surgeries for her, so I'm willing to try anything before surgery. Reagan was not thrilled when he stuck that tongue depressor in her mouth. I thought she was going to throw up. She acted like she was going to gag...but she didn't. She's actually choked/almost gagged a few times today but I really think it was more an issue with not managing her spit well. She's been in a pretty good mood today. A little spunky. Lots of laughing, some squealing. Very wide eyed and alert...almost hyper alert at times. Not sure how that will translate into sleep tonight. We've got to find a way to get more consistent good nights of sleep. Tomorrow it's another early 9:15am appt with Dermatology to hopefully get a diagnosis of what's on her head and how to treat it.

Sunday, November 14, 2010

More alert but still a little dazed

Reagan was a good girl last night for her Grandma while we went out for my birthday/anniversary. My sister met us at the restaurant. I was shocked, since she lives in Dallas I wasn't expecting to see her. It was a nice surprise. We had a nice dinner and listened to some music but we were home by 10pm. Party animals, I know. Reagan slept through the night last night (as far as we know). This morning I left at 6am to take my mom to the airport. When I got home sometime after 7am I looked in on Reagan...she was laying there completely still, eyes wide open! So needless to say, we got an early start today. Reagan has had a few groggy moments but overall she's been more alert today. She's still a little dazed though...I wonder if that's due to the new medication (nortriptyline)? Tomorrow she's got an 8am appt with the ENT to make sure that her tonsils/adenoids aren't too big and causing her apnea and sleep problems. I don't think that's the problem, but they want to check that first before doing something as drastic as CPAP. I'm not a fan of early morning appts and almost never schedule them, but this was a rescheduled appt and we didn't have much of a choice. Hopefully Reagan will sleep the whole way there...that would be nice! We've only been to this doctors office a few times and I remember a long wait. Maybe that won't be the case since we have such an early appt. We'll see. Hopefully we get a good night's sleep tonight or tomorrow is going to be a long day!