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


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!

Saturday, November 13, 2010


Last night was a pretty good night for sleep. Reagan woke only once and Mike went in and quickly got her back to sleep. I was out cold. Then this morning we all get up around 8am but Reagan's still out. Around 10:30am she started fussing here and there in her sleep but she was still totally out of it. I finally picked her up out of bed at 11am but she was completely limp. I laid her down in the living room where I could keep a close eye on her but she just continued to snooze. I did give her some liquid melatonin last night. In the past melatonin hasn't done a thing for her but who knows. I certainly wouldn't think it would make her sleep all day though. We just never know with this girl. Of course, sometimes she does sleep all day. I'm certain it's mito related. I think her poor little body just gets so exhausted by the lack of sleep...finally it just says enough is enough. She finally woke up at 12:30pm...but she was not happy. She woke crying and it took a while to get her to settle down. Around 2pm we decided we would take her out for a walk and before we even got out of our driveway, she was back asleep. I guess she was still tired...poor thing. We went on the walk anyway, I'm sure the fresh air is good for her. She finally woke up around 6pm...she had a pouty lip but she seems better now. Tonight my mom is going to watch Reagan while Mike and I go out and have a nice dinner to celebrate our anniversary and my birthday (which is tomorrow). Hopefully she'll behave herself for her grandma!

Friday, November 12, 2010


Reagan woke up a turkey this morning at 5am. She was crying so I had no choice but to pick her up and try to console her. For some reason she seemed to get even worse after I picked her up. She was NOT a happy camper. Eventually I had all I could take so I laid her on the floor on her wedge and put a movie on for her to watch. Immediately she calmed down and just laid there watching her movie. She didn't want to be messed with...she just wanted to watch her movie in peace. When Mike got up to go to work, he tried to come over and give her a kiss and immediately she made a pouty face and started crying. She did eventually chill out and was pretty mellow most of the day. Actually a little too mellow...she's been a little droopy lately. I don't know if it's that new medication or if maybe she's just tired. You never know with this girl. She actually looks more awake and alert tonight than she has all day...go figure! She took one nap today and it was a short one but just long enough to miss vision therapy. She has a knack for doing that. She did have OT this morning, but her droopiness prevented her OT from really making her work. This afternoon Grandma took her out on her swing for over an hour (and painted her toenails for the first time ever) and we took her for a long walk in her new jogging stroller. It was nice. I'm worn out...but I'm sure that has more to do with sleep deprivation. Hopefully we'll all get some sleep tonight. I feel like I'm going on empty right now. Please keep her in your prayers for sleep and more good days!

Thursday, November 11, 2010

A special anniversary

So...today is my and Mike's 10th wedding anniversary. We went to Maui for our 5th and vowed that we'd go back every 5yrs. Needless to say, we didn't make it this year. Hopefully, sometime in not too distant the future, we'll make it back. Last night Reagan's gift to me was keeping me up all night! She only slept for 2 separate 45 min periods (and I'm pretty sure she didn't sleep the entire time because when I went to pick her up, all of her covers were completely kicked off). At first she was very cranky and I was very tired and frustrated. Around 3-4am she finally chilled out and it was nice to just hold her and look into those big beautiful eyes. She's actually been in a great mood all day today. She only took one 30min nap but she's been very alert and happy despite the lack of sleep. She had OT, PT, and the teacher/speech therapist all back to back to back. She was great for all of them. Her teacher kept commenting on how visually attentive she was today...which is amazing considering she was the last one to work with her! To tell you the truth...I'm amazed that she's been so good today. I was bracing myself for a couple bad days in a row...maybe we really are done with the cycling of good days/bad days. Wouldn't that be wonderful...if this new medication is really doing the trick and stopping the nausea and the consecutive streak of bad days?!?!? That would surely be an answer to prayers! This time of year last year is when we got our biggest answer to prayers yet...Reagan became seizure free! Nothing short of a miracle! We were going through so much drama with her not eating/vomiting, becoming dehydrated, having to go into the hospital for weeks and getting a g-tube...we literally didn't even realize they were gone! It's funny how God works sometimes. During such a stressful time, we were blessed with our best gift yet! Definitely something to be hugely grateful for. Tonight we were sitting at Bible study with Reagan laughing up a storm...so many things to be thankful for...who needs Maui? In 10yrs of marriage we have learned so much and in this last 3.5yrs with Reagan we have grown closer to God and closer to each other. Here's to another 10yrs...

Wednesday, November 10, 2010

Tears & Biting

I was really hoping we had skipped the bad part of the cycle. It should have been last weekend, so I thought we were in the clear. But it's been a rough one today. Reagan slept through the night last night (as far as we know) and woke around 7am. She was in a sketchy mood. For example, Mike was still here and he came up to her to give her a kiss and immediately she stuck her bottom lip out and was about to cry. She did this several times to his dismay. Then an hour or so later, she was fine one second and screaming the next. We figured it was probably tummy pains and sure enough she eventually had a dirty diaper. Unfortunately that didn't really cheer her up. The crying continued and I promptly canceled both her teacher and her doctor's appt (a check up with the PM&R doc). She calmed down for a little while and then bit her cheek while laying on her side. She cried nonstop for a while and then finally cried herself to sleep. She took a pretty good nap but woke crying once again. Lots of tears today. Lots. Those tears have made her even more gunky sounding. She's also been very spitty, so that's not helping matters either. And the hands, the left hand specifically, we just can't keep it away from her mouth. She's obsessed with it. And every time she gets a finger in there...she bites it! We've been keeping a mitten on her hand at all times and then even wrapping a blanket around the mitten, but she's very clever at getting the blanket off. Heck...she can even wiggle out of the arm restraints! Tonight she was laying on the floor happy as can be, when she got her whole thumb (down to the base of her hand) into her mouth and bit it hard! She left marks on her hand and was extremely upset about it (it would have gone through the skin if she didn't have her mitten on). I just don't know what we're going to do with her! When we hold her we'll usually hold that arm down and I swear she has super human strength...she still pulls it away from us! Tonight I think she'll be wearing an arm restraint to bed. I just hope she sleeps through the night! We need our sleep to recover from this day (and prepare for whatever tomorrow brings). Please continue to keep her in your prayers!

Tuesday, November 9, 2010

Snotty girl

Reagan slept the whole night again last night! She woke up this morning just before 8am and she seemed to be in a good mood. I'm so glad she got another good night's sleep last night because she's still got this cold to fight off. She continues to be very snotty and congested. Poor thing. Both OT and PT came and worked with her today. She did fine during OT (although she was a bit spitty and definitely lacking head control) but during PT she couldn't stay awake. After PT left she took a long nap. I guess her body just needs that right now. When I first started feeling sick, I had a killer sore throat. Now my throat is fine but I have a lot of the sinus issues and this tickly, unproductive cough. I hope Reagan can skip some of that and just get better already. I feel like we're missing out on some of her "happy" days with her being sick like this...although she did get very "talkative" tonight, which was very cute! All in all she's been very good today...especially when you consider she's sick. I spoke with the pediatrician's nurse today to see if they had gotten any results back from swabbing her head. She said that it was negative for yeast but that it can take up to 6weeks to culture fungus (no clue where the doctor got 2-5days)! So as of right now, they can't prove or disprove ringworm. In the meantime we're just supposed to continue with the Nizoral shampoo and the Blue Star Ointment and they'll let us know if and when anything grows. Lovely. So that's all for now. Please keep Reagan in your prayers...that she continues to get good quality sleep at night and that she gets over this cold quickly!

Monday, November 8, 2010

Sleep overload

Reagan slept last night!!!!! So exciting. We really needed that. Of course, this morning when I woke up I found out that I had forgotten to hook her back up to her feeding pump! That means she went 12hrs or so without it! I've forgotten before, but I always remember at some point and get back up...she's never gone longer than like 6hrs without it. I guess this is what happens when you're sick and still trying to do everything. I wonder if letting her intestines rest all night helped her sleep? Or maybe the humidifier I put in her room with soothing vapors? Or maybe she's just catching up after the last couple days of no sleep? Who knows, I'm just glad my girl got some much needed sleep! And when I say sleep...I mean sleep! She was so comfy all stretched out in her bed...I couldn't bear to wake her. Finally around 11:30am, I forced her awake because we had to get her ready for the appt with the sleep clinic. She reluctantly woke up but by the time we left 45min later...she was already back asleep. So here we are going to the sleep clinic to talk about our child that never sleeps...and she's fast asleep! The lady was very nice...she's a nurse practitioner who has obviously been doing this for quite sometime...and she really took her time, never rushing one bit, which I appreciated. I told her of everything we've tried with Reagan and she was really stumped. She said any of these medications that we've tried with her should have knocked her out cold! Her only suggestion is to give the melatonin another shot and this time don't quit after a few days...keep her on it for a few weeks to see if that does anything. We've tried melatonin in the past but I don't think we ever gave it to her for more than a week. So I don't know...we'll see. She does think that CPAP may be worth a try but she agrees that the next step would be to get her checked out by an ENT to make sure she doesn't have anything obstructing her breathing. She says it's unlikely that this is due to obstruction and more likely that it's due to her hypotonia (from mito), which can cause problems getting air in as well as pushing CO2 out. So needless to say, Reagan slept the entire time we were there and then came home and slept some more. Tonight she was awake for a couple hours and that was the longest stretch of awake time she's had all day. She was super snotty and congested...I'm pretty sure she caught my cold, poor thing. Please keep it in your prayers that she gets over this quickly without any major issues. Hopefully she'll sleep through the night tonight and actually be awake and happy tomorrow!

Sunday, November 7, 2010

Sleep needed

Last night was not a good night in the sleep department. Little miss Reagan decided that she was not going to sleep at all! She fell asleep (after her clonidine) and you could just tell she wasn't sleeping soundly. She kept having these coughing fits where she'd cough 4-5 times in a row, I'd jump out of bed thinking she was gagging and by the time I got there, she'd be back asleep. She slept for less than an hour before she woke up crying. I tried to lay in bed with her, but she just wasn't calming down. So we got up and watched some late night tv. She was fine as soon as I took her out of her bed. I was up with her for 3hrs and she was bright-eyed wide awake the whole time. Finally I couldn't stay up any longer and decided to just try her out in her bed to see if she'd be content (I knew she wasn't going back to sleep). She laid there for a couple hours and I finally got a little sleep. Despite the fact that she's going on no sleep and we have seen a slight increase in chorea, her mood has actually been quite good. She's very smiley and seems pretty content. She's been a ultra sensitive today, startling fairly easily. She's still super spitty and constantly trying to put her fingers in her mouth. We have to keep something over her left hand at all times or those little fingers will get chomped! All in all, we've had a good string of uneventful pretty good days. I've had a horrible sore throat for a few days now and I'm beginning to think I've got a cold. Hopefully Reagan can avoid it (although she does sound a little congested)...with her attached at my hip that might be difficult. Please keep it in your prayers that she stays/gets healthy and finally gets some sleep!

Saturday, November 6, 2010

It's beginning to look a lot like Christmas...

Reagan was trouble again last night. She kept waking up crying again. We spent a lot of time in her bed trying to get her back to sleep. Lately it seems we're not getting much sleep. I guess it's a good thing we have an appt with the sleep clinic on Monday. I'm hoping they might have some sort of suggestion on what we can do to get Reagan to sleep on those difficult nights. We'll see. Reagan woke cranky again but chilled out fairly quickly and has actually had another decent day. Based on the cyclical pattern we've been stuck in, these should definitely be "bad" days but it seems maybe we have turned a corner and instead of bad days we're just having slightly "off" days. The sleeping is definitely off and Reagan is just not as animated and happy as she is on her good days. But overall, things are pretty good. An "off" day is certainly way better than any "bad" day! Maybe that new medication is actually helping? Wow...wouldn't that be great! I guess we just have to wait and see. Lately Reagan has been very content to lay on the floor and watch movies on her DVD player. Her favorite is The Grinch. Or should I say...my favorite. I'm actually a little obsessed with the Grinch. I know both the book and the movie by heart and my poor Christmas tree has become overwhelmed with Grinch ornaments. Hopefully Reagan really does like it because we've been watching it multiple times a day for the last several days. I'm SO ready for Christmas! I just love the whole Christmas season (now please don't ask why, no one quite knows the reason). Last year I feel like we missed the season just sitting in a hospital room. Hopefully we'll have a much less stressful and much more pleasant holiday season this go round.

Friday, November 5, 2010

Still off

Reagan finally had a decent night's sleep last night. She did wake up once...an hour or so after going to sleep. She was fussy and I really didn't think she was going to stay asleep. But she did. Then this morning she woke super fussy. Lots of crying. I was worried we had a full blown bad day on our hands. She was very stuffy and congested (maybe from us running the heater at night) but we managed to get her to calm down and she's been fine ever since. Again, this is not the happy, giggly girl from a few days ago. She's still "off". She's a little on edge but she's not having any chorea. She's actually very still...droopy is a good description. I sure hope she's not coming down with something. One thing that has improved lately is her peeing. One of the nurses who has been filling in mentioned that she thought Reagan was not getting enough fluid. We had been talking about the fact that some days she'll go all day without a wet diaper and then we have to give her lasix to get her to go again. She thinks it might be due to her not getting enough water. She calculated it and Reagan was a good 200-400mls short of where she should be for her size. We spoke to her pediatrician and she suggested that we slowly increase the rate on her feeding pump from 40ml/hr to 50ml/hr (20hrs/day). So we're just adding more water to the formula she was already getting. So far, so good. Right now we're at 46ml/hr. She's certainly been having more wet diapers per day...so hopefully this will help us avoid having to give her lasix or take her in to have her cathed (yuck)! Please continue to keep our little one in your prayers...I'll take an off day over a bad day, any day!

Thursday, November 4, 2010

A little off

Reagan was up a lot again last night. Both Mike and I spent time in bed with her trying to get her back to sleep. Each time she woke, she was crying. Not fun. Then this morning she slept in til after 10am! Amazingly enough, she woke happy again. She was a little groggy this morning but she made it through both OT and PT without a problem. We were beginning to think we were in the clear...an unprecedented 6 consecutive good days! Then she had both the teacher and the speech therapist working with her and out of nowhere the crying started. Big time crying! She was in the stander so we had to pull her out and try to console her but that was not happening. She was not a happy camper. I held her for a while (in the poop position) and sure enough she started going. She had lots of gas, so I'm sure that was hurting her too. She cried for a couple hours and then we laid her down to change her wet diaper and she stopped crying. She seemed to be happier there on the floor. So we set up her DVD player on the floor next to her and let her watch a couple movies and she was completely content. I was afraid to pick her back up but when I did, she was fine. Still a little "off" but calm. Tonight we even got a few laughs out of her. So I don't know...was this a "good" day...probably more of an "off" day than a good day. But most of the day she was content and that's definitely a good thing.

Wednesday, November 3, 2010

So far, so good!

Last night was a little rough. Reagan kept waking and fussing. Each time, I'd go and lay down in bed with her until she fell back asleep. This happened quite a few times. Needless to say, Mommy didn't get much sleep at all last night (and now has a killer headache today). After the rough night, I was a little worried that we may have a grumpy girl on our hands today. Reagan slept until 9:30am and surprisingly woke in a decent mood. She did have a sudden throw up after waking up, but ever since she has been fine. She had vision therapy this morning and then her teacher/OT came at noon. She seemed to do well for both. I wouldn't say she's been super smiley or giggly today but we've still managed to get some of both. This afternoon we took her in to the pediatrician so she could check out the spots on her head. She thinks it may be a fungal infection (ie ringworm). She said with Reagan's immune issues and the amount of doctors appts Reagan goes to, she could have picked it up fairly easily. Ugh. She took a swab to send to culture but that could take 2-5 days to get the results. In the meantime she said we could use blue star ointment on it and wash her hair using Nizoral shampoo (anti-dandruff shampoo). Her biggest concern is if it turns out to be ringworm is how to treat it. Reagan's on so many different meds, she is really hesitant to put her on an oral antifungal which can cause major liver damage. So...best case scenario would be for it NOT to be fungal...but if it is, please pray for guidance for her doctor in deciding how to treat it. And keep praying for more good days...so far, so good!

Tuesday, November 2, 2010


Reagan's night started off a little rocky. She was groggy and fell asleep even before I gave her the clonidine. We put her in bed and she woke only minutes later screaming. I went in there and put my arms around her and she fell back to sleep pretty quickly. Then later, as we were headed to bed, she woke crying again. Mike crawled in bed with her and she fell asleep only moments later. Maybe it was the stormy weather that kept waking her...who knows. But after that she slept straight through and even slept in this morning. And to top it all off...she woke with a smile...I can't even tell you how relieved I was to see that. That makes 5 good days in a row! Please keep it in your prayers that these good days continue. She's been such a sweetie again today. Very smiley and giggly. A complete joy. She had OT and PT today and was great for both. I spoke with her pediatrician today about the bald spot on her head and she said she wants us to see Dermatology. She thinks it may be a side effect from the new medication she's taking for nausea (nortriptyline) or some sort of drug interaction with one of the many meds she's on (could be the Suprax we started last week). Her nurse was supposed to make an appt for us and get back to me but I never heard back from them. I did notice something new today. When we gave her a bath this afternoon, I noticed a group of red spots on the back of her head. It's not directly beside the bald spot, but close by. It's definitely raised and doesn't look good. I didn't notice it til after 5pm, so I didn't get a chance to call the doc. I wasn't sure if I should try putting something on it until we get in to see someone or what. Any ideas? Looks painful (although it doesn't seem to be bothering her).

Red, huh?

The spot is on the right side...to the left it's just parted funny.

Monday, November 1, 2010

Daddy's B-day

Last night was an OK night. I think Reagan slept alright (she never woke me up), but both Mike and my mom said they heard her "talking" in her bed at some point. Each time I saw her, she was still sleeping. I got up and took my mom to the airport at 5am, I got back by 6:15am, and Reagan was up by 7am! So not much sleeping in today, but that's OK. Today is Mike's birthday. He had to go to work. No fun. I did bake him his favorite...Pineapple Upside Down Cake. That should be good on the waist-line (he got his present, a basketball goal, two weeks ago). Reagan has been great today. We had a new nurse today who was filling in for our usual Mon/Tues nurse who is out of town. Things went really well. She has a background in PT...which I love. I think she may take over our Wed/Thurs/Fri since our other nurse (who we loved) never came back. Anyway, Reagan has been a real sweetie again which is great. I can't ever get enough of those smiles and laughs. I just wish we could do something about that spit! Ugh. Driving me crazy. Her face is still so red! I don't know what we're going to do! And then something new we noticed...she's missing a little round patch of hair on the top of her head. It's smaller than a dime, but it's completely smooth with no redness whatsoever. No clue what that's about. A month or two ago we noticed a different spot on the back of her head that looked like it was thinning out, but we just assumed it was from her laying on her back and turning her head back and forth over and over again. But now I'm wondering if maybe it's something else altogether. We might need to have this looked at. Like we need anything else to deal with! Tonight Reagan and Daddy put on their Rangers gear to watch the Rangers lose the World Series. These pictures were taken before they lost!