Tuesday, August 31, 2010

Mito appt

Reagan woke up a few times last night but went back to sleep on her own each time. Whew! Close call. This morning she had an appt with the mitochondrial doctor. Her appt was at 10:30 but we didn't see the doctor until around 12:30! She was very apologetic and spent a long time talking with us, so I can't complain. We talked about Reagan's vomiting episodes. She's not at all happy that Reagan is having consecutive days of vomiting. She thinks we need to come up with a better game plan to treat her nausea/vomiting and to stop it in it's tracks (before it escalates to an entire day of vomiting). She thinks there are some undiagnosed problems causing it that should be addressed by Reagan's GI doc (who we saw yesterday and she had no suggestions or solutions). The current plan is to see another GI doc...one whose expertise is in motility and deals more closely with mitochondrial patients. We're also going to see a movement disorder doctor that is in the same practice as the mito doctor, to see if he has any thoughts on treating her chorea. She agreed that a sleep study should probably be done and her office is scheduling that. She also mentioned some interesting DNA test results that we had never been notified of...a heterozygous mutation in Reagan's SURF 1 gene. Reagan's specific mutation in this gene is not one that has been previously discovered so it makes it hard to say whether or not this means anything. Mutations in this gene have been associated with Leigh's syndrome...something we do NOT want Reagan to have (although she does have a lot of the symptoms of this disorder she does not have the MRI findings so that's good). They took blood from both me and Reagan (and Daddy as soon as we can get him to go) to look for this same mutation. If they find it in either me or Mike, then it is not a harmful mutation and it means nothing. If they don't...then it might be what is responsible for her mitochondrial disease. All in all, I feel like this was our best appt yet. I feel like the mito doc was really listening to my concerns and that she herself was concerned about Reagan, which is comforting. They even scheduled a followup appt with us 7wks from now, just to see how everything is going. Hopefully well. Reagan was great today for the appt. There was a lot of waiting and she was a trouper. She did cry out when she got stuck for the blood (which she usually doesn't do), but she got over it quickly (although she did cry again when I took her bandaid off). We rushed home and made it just in time for PT. Her therapist said she was really doing well on her tummy and side today and very responsive...pushing a toy over and over on her own. Then she spent an hour or so in the stander playing with her ipad. All of her therapists just love this thing. Reagan seems to like it too. Other than a little sniffly, snorty thing she's doing with her nose and some chorea in her hands, Reagan continues to do well. It's so nice to have good days for my girl...she doesn't have enough of them!



Here she is watching a book on her ipad...and grinning from ear to ear!

Monday, August 30, 2010

Pee problems

Last night Reagan actually fell asleep on her own and then slept the whole night through. She's been in another great mood today...very smiley and happy. She had an appt with her GI doctor this morning. She was happy to see how good Reagan looks. She was 60th percentile height and 68th percentile weight. Definitely not the skinny girl from last Christmas. She thinks the vomiting episodes Reagan has been having fit the criteria of cyclic vomiting syndrome. They come on out of nowhere...she's horrible one day and fine the next. The doctor thinks we should continue upping her periactin dose when we see the nausea creeping back up. Problem is...periactin stops her from peeing. It's a known side effect of the medication, but for some reason it really hits Reagan hard. We've been giving Reagan 1/4 tsp each day for a while (the prescribed dose is 1tsp) and when she gets sick we increase it to 1/2 tsp. Just increasing it that small amount causes her to stop peeing. We have to give her lasix to get her to go. It's not like she's not making urine...she's just not releasing it! We upped her dosage last week and all weekend she wouldn't pee without lasix. I've since decreased her dosage back down but she's still not going on her own yet. What are we to do with this girl?!?! I wonder if we could prevent this nausea if we were able to give her the full recommended dosage. Who knows. There are other medications they can use for cyclic vomiting syndrome, but most of them are all neurological meds that have the potential to interact with her seizure meds. Not something we want to risk at this time. Other than that, she seems to be doing well. Her hands are still moving a lot, grabbing at her shirt or at her hands/arms, but not so much that she's clawing or hurting herself. Tomorrow morning we've got an appt with the mitochondrial doctor. We're hoping to get her to work a little more closely with us in Reagan's care. I've got a whole list of questions ready to ask her. Hopefully we have a productive appt. Please continue to keep Reagan in your prayers...we need some more good days!

Sunday, August 29, 2010

Party girl

Reagan slept through the night last night. Thank goodness because I was running on empty from the night before! She woke happy this morning around 8:15am and the smiles have been going strong all day. She was in such a great mood we ventured out to a birthday party (something we never do). It was Samuel's 4th birthday and I'm so glad we were able to attend. Grandma came with us which was a big help and we even took Reagan's positioning chair along (our first time to use it out and about). It was at a pottery place and all the kids painted their own piece of pottery. We picked out a little crown for our princess and Grandma helped her paint it pink. It took two tries to finally get a decent hand print on it. I can't wait to see it all glazed and ready to go. Reagan was a complete doll the entire time. All smiles (which is great because it was a 45min drive from our house). We really couldn't have asked for her to be any better and it was nice to get out and do something semi-normal. We rarely venture out of the house for anything other than a doctor's appt or therapy session due to our fear of exposing Reagan to germs, but Samuel also has mito and immune dysfunction so I was fairly confident there wouldn't be any sick kiddos there. It all turned out well and Reagan appeared to enjoy herself. She had a couple of mini meltdowns today (two for Daddy and one for Grandma)...I think she just got so happy/excited that she started crying. Sometimes you have to be careful not to get her too happy because next thing you know, she's in tears! Today I only saw one startle-like episode when she first woke up this morning. She did a few other questionable things when she was laughing hysterically, but I'm still hoping all of this is nothing. Neurological quirks we can live with...seizures we cannot. Please continue to keep her in your prayers.



Saturday, August 28, 2010

Talking instead of sleeping

Reagan was up all night last night...only this time she was up laughing and talking. I put her to bed around midnight and the second I laid her down she woke back up. I laid down and and watched her on the video monitor, wide awake and moving around. I woke up at 1am and she was finally asleep. Then I woke at 2am and she was back awake. I got up and gave her a little more clonidine to see if that would help her go back to sleep. Then she kept making a weird grunting noise over and over. I picked her up and immediately she made a horrible gagging noise (but never threw up)...after that she seemed better. I laid back down and the talking began. She was saying all kinds of things. I listened to her (worried that she might gag again) and I just couldn't fall back to sleep. So I got up and laid in bed with her and she talked my ear off. Da! Ga! Ahhhhhh? It was so cute. Neither one of us ever went back to sleep. From what I can tell she got maybe 1hr of sleep last night. Not good. Despite that, she's been in a wonderful mood again today. Smiling nonstop. Laughing. So good to see her happy again. She's still super spitty and a little gurgly but it hasn't bothered her too much. I have seen something today that is a little disturbing. Quite a few times I've seen her throw her arms out to the side in what looks like a startle. For those of you familiar with Infantile Spasms, that's certainly not something you want to see. I'm not sure how many times she's done it, but a lot. The only thing is, if you're holding her with her arms held down, she doesn't do it. So I'm hoping it's nothing, but it still makes me nervous. Please continue to keep her in your prayers. She definitely needs more sleep so that she can fully recover. Grandma still needs her sleep as well. Mommy and Daddy are getting out of the house to go to the football game tonight (front row tickets to the Texans/Cowboys game)!!

Friday, August 27, 2010

Smiles

Here's the post everyone has been waiting for (especially me)...Reagan slept last night!!!! Not only did she sleep last night, but she woke up this morning with smiles!!!! What an answer to prayers. We're not out of the woods yet, she's still not back to her healthy self, but she's certainly better than previous days. She's still a little groggy but no nausea at all today. Very spitty (and she occasionally chokes or coughs on the spit) but not at all gaggy. Lots of licking on her hands. She's much happier as well. She's smiling and even the occasional giggle. So great to see that. That good night's sleep certainly did the trick (that and of course all the prayers)!! We took her in today to get some more lab work (at the request of her GI doc). The lab tech got it on the first stick but it took forever because the blood was just not flowing well. Reagan was a trouper though and just laid there as she squeezed on her arm and moved the needle around. Then I went and had lunch with Meghan (Jackson's mom). It's been forever since I've seen her and it was good to get out of the house for a little while. I came home to find Reagan still smiley and in a good mood. And tonight she's been giggling up a storm! I'm hoping we continue to see good days for our little one! Please keep her in your prayers...



Thursday, August 26, 2010

I said NO more throw up!

Ugh. When are things going to start getting better? Last night Reagan slept three hours and then I got up with her from 1:45-4:15. She was quite miserable. Very moany and fussy...she was on edge the whole time. She fell back asleep but apparently woke an hour or so later and then just laid there in bed (Mike could hear her making noise but she never cried). I woke at 7am to find her still laying there wide awake and moving about. No covers but her entire back, hair, etc was soaked (with sweat, I guess). I picked her up and minutes later she threw up and continued to do so off and on all day long. Lots of throw up. Lots. No quite as frequent as two weeks ago, but close. And when she's not throwing up, she's making gagging faces. She's nauseous nonstop! We drained her g-tube (remember she gets all of her formula through her j-tube) and lots of fluid came out...clear foamy fluid and golden yellow bile as well. Since she's not fed into her stomach, she really shouldn't have much if any fluid sitting in there...except when she gets sick, things just stop working as they should and we find a buildup of fluid in there. I'm sure that's part of what's making her nauseous. Other than last night, she really hasn't been moany at all today. Just gaggy and beyond exhausted. Poor thing. You can tell she's just spent. She's exhausted but she can't sleep. Despite being up the night before, all day yesterday, most of the night last night and all of today...she still can't sleep! My mom is actually having a similar problem right now. She's only slept 5hrs (total) in the last 9 days. She called and spoke to someone at a sleep clinic and they sent her to the ER. Unfortunately they didn't find anything and they just sent her home with some Lunesta. Hopefully it works. My poor mom...she needs some prayers too. No one in this family is getting sleep! Do you think it could be genetic? Please continue to keep Reagan in your prayers, she still very much needs them.

Wednesday, August 25, 2010

Moany

Reagan was up a good portion of the night last night. Half of it she was crying and the other half she was moaning. However you look at it, she was miserable (and still is). She was very tense and on edge all day today. Lots of moaning and fussing. She was still having lots of movements, clawing at her arms and crunching her body in half over and over again. She didn't really take any long naps today, just the occasional cat nap that ended with her startling awake and miserable once again. She did have two poops (very out of the ordinary for her and possibly indicating a stomach virus of some sort) and she had four big throw ups. The suction pump hasn't been as helpful as I had hoped. It's difficult to maneuver when you're already holding her in your lap (need more hands)...today we just used the old method of just wiping it out of her mouth with a blanket. And each time it was a pretty big amount of foamy spit. Such a miserable feeling to throw up, I hate seeing her have to go through that. She just looks so pathetic and so sick. I feel so bad for her. We definitely need continued prayers...prayers for health, prayers for happiness, prayers for sleep, and prayers for no more throw up!

Tuesday, August 24, 2010

Lots of crying

Reagan slept last night. Thank you God. Seriously, we really needed that. She actually slept in til about 10:15am but then she woke with a vengeance! It all started with some gas she was having and then she cried every waking moment since. And I'm not talking about fussing...she's screaming crying nonstop (and holding her breath too)! She fell asleep once on my lap and once on the nurse's lap both of which were pretty good naps, but then woke up screaming again each time. I did get a good look in her throat (with all the crying) and I didn't see anything that would resemble a sore. Of course, I can only imagine if her throat wasn't already sore, with all of this crying it must be extremely sore now! She's also been very gurgly. You can hear spit pooling up in her throat (and the crying just makes it worse). She'll cough it up and then half swallow it back down, never fully clearing it. She did throw up once this morning...which could have been triggered by all of that spit. Poor thing, she's still very much miserable. We got a call from the lab today saying that yesterday the lab tech used the wrong tube for one of the tests and that they need another sample. With Reagan screaming in the background, I told the lady I didn't feel like dragging her back into town for this. And then she told me they could send someone out to our house to take it, but then I never heard back from her. Sounds to me like that test is not going to get run. Tonight she was slightly better. A little less crying, a little more fussing. She definitely seemed to perk up when Daddy got home (she stopped crying and listened to what he was saying to her)...although nothing lasts long and she was back to fussing/crying soon enough. With the naps Reagan has taken today, I'm not sure how much sleep we'll be getting tonight. Please continue to keep her in your prayers...

Monday, August 23, 2010

No sleep, bad day

What a night. To say Reagan didn't sleep well is an understatement. She fell asleep by 10:30pm with the help of clonidine. I went to bed around 11:30 and she was awake by 12:30. She was up and she was not a happy camper. We watched some tv and finally she was back down by 2am. Then 3am, she was back up with lots of crying. This time she woke both Grandma and Daddy. The whole house was up! With Grandma's help she was back in bed by 4am but then woke for good at 6am. Not a good night. We are all sooooo sleepy. Reagan has continued to be miserable all day today...no sign of smiles or happy today. This afternoon we decided to go ahead and take her in to get some bloodwork (just in case something is off) and while were were there we stopped by the pediatrician's office. Reagan was running a low grade fever and still very irritable. The doctor did see a "blister" in the back of her throat that might be causing some of her irritation...but overall we're still not sure what's bothering her. Tonight she threw up a couple times...maybe her throat is bothering her. Days like these feel like wasted days. We start the day just hoping to get through it. Reagan's just so tense. You can't interact with her at all. You can't even look at her without her losing it. Her little body is so stressed...I only wish we knew why. It's a helpless feeling. She needs sleep...that little body needs to recover and get healthy again. Please continue to keep her in your prayers.


Here she is "crunching" she's so tense.

Sunday, August 22, 2010

So happy that she can't stop crying

Reagan slept in this morning...usually not a good sign. She woke up super tense. She's also been a little bipolar...she goes from laughing to crying in a matter of seconds. Poor Grandma made Reagan so happy she cried a few times. We've had to tippy toe around her all day...she's on edge and so are we. Her movements are out of control. She's crunching forward nonstop, clawing at her arms and neck, she's tried to bite her fingers way too many times. I don't know what we're going to do with this girl. All of these things are usually an indication that she's either sick or getting sick...but that's about all we have to go on. There aren't any defined symptoms that give us a hint as to what it is...she's just not herself. (And to top it all off...her nurse has already called in sick for tomorrow!) Please continue to keep my girl in your prayers...

This is the pouty face...just before a crying episode.


Here she is hanging out with Daddy and smiling away! (One second she's up, the next she's down.)


Trying to keep her entertained...



Saturday, August 21, 2010

Prayers for health

Reagan slept well and woke up this morning still happy but having lots of movements. More clawing at her arms and now she's moving her legs around more too. Yesterday we noticed the cold, clammy hands and feet again and they've been just as bad today. She's definitely more on edge...still happy and very smiley but more tense. She's laughed some today but it's the crazy laughs, not necessarily the happy laughs. All of this is what we tend to see before she gets sick...although there have been a few times that she's managed to pull back out of it without getting sick. I pray this is one of those times. Grandma is coming in tomorrow and I know she really wants to see a happy Reagan. We all do. Please keep it in your prayers that she can get over whatever this is...sooner rather than later.

Friday, August 20, 2010

Good days

Reagan has had another good day today. She slept well and woke smiley once again. Other than being a little congested in her nose, all is good. She only had one therapy today...and that was OT. She has OT Tues/Thurs with one therapist and Fri with another therapist. This was only our second visit with this therapist, so she's still getting to know Reagan. All went well though. After therapy she took a 45min nap...not like her but she woke feeling refreshed and spunky. Then this afternoon we filled up the pool and let her swim again! Today she was a little more laid back in the pool but she was smiling the entire time!

Thursday, August 19, 2010

Smiley

Today has been a better day for Reagan. She slept through the night last night (good for all of us) and then woke up this morning with smiles. So glad to see some smiles. And some laughs and happy sounds too. All good things. Of course the chorea in her arms has picked up a little again, but I'm just glad to see a happier girl. She had both OT and PT today and they both tried out our new therapy swing. Reagan really seemed to like it. We spoke to Reagan's OT today about doing some water therapy with her (we knew she was doing it with another patient) and our Wed/Thurs/Fri nurse has a pool and lives just down the road from us. So next Thursday we are going to give that a try (weather and Reagan permitting). Right now it's bedtime and Reagan is just sitting here still smiling from ear to ear. An answer to prayers. Here's to another good day tomorrow!

PT...


OT...

Wednesday, August 18, 2010

Up all night

Just last night I was thinking about how well Reagan has been sleeping lately. I didn't talk about it, or even mention it to anyone, I was just thinking. And then POW, last night she was up all night! She was asleep by 10:30ish...I got to bed by 11:10 and at 11:19 she was up crying! She actually did this the night before but I just patted her on the back and she eventually fell back asleep. Last night patting her on the back was not consoling her, so I picked her up and sat up with her for a while. She fell back asleep and I laid her back down at about 12:15. She was up crying again an hour later. I picked her up again and eventually she fell back to sleep. Then she woke at 4am and was up. Around 5:30am I texted our nurse to let her know that Reagan was up (she lives right down the road and always says that I should let her know if I need her early)...and she was here before 6am with homemade tiramisu for me! She's a keeper, that's for sure! I laid back down and Reagan snoozed off and on as she pleased. She's still very droopy today. Groggy because she didn't sleep well, but still very serious and blah. I'm not sure what it is. I don't know if it's mitochondrial related and she's just wiped out or if she's coming down with something...I just don't know. Late this afternoon right before her bath, she had another throw up. She's made some gaggy faces here and there today, but this just came out of no where again. This time it wasn't a lot, but anything is too much in my book. I'm still waiting for this to pass. Please continue to keep her in your prayers...

Tuesday, August 17, 2010

Swinging

Reagan continues to be a little off. It's not that she's fussy, but she's just not happy. Very serious. Disinterested. And still (which I'll take any day over the crazy chorea). She had both OT and PT today but she was not an active participant in either. We did finally try out her Ikea Ekorre swing. We've had this swing for a year or so but haven't used it until today. Now, thanks to Mike, we have a good sturdy hook to hang it from (Mike wedged himself in the swing this weekend to test it out). When Reagan's OT put her in it, she was expressionless but she definitely didn't seem to mind it. Then at the end of PT her therapist put her in her new stander. I wasn't sure how well she'd do in it in this mood, but we kept her attention with the ipad for a good 45min and then took her out. I have to admit we haven't been using the ipad for communication purposes just yet but the apps she does have are all educational in some shape or form. I did find a new favorite app today. It's called fish school (by duck duck moose). It's the cutest thing. It uses little fish to spell out the alphabet, numbers, and shapes. It also sings the alphabet, teaches colors, and has a matching game. It's a very cool app...well worth the $1.99. Reagan wasn't as excited about it as I was but maybe when she's in a better mood she'll be more interested. Tonight Reagan had another throw up incident. She was on Mike's lap, one second she was fine, next second she was puking. We had the suction pump right beside us and I immediately whipped it out but I couldn't get it to suction anything. I couldn't figure out what was going on. Apparently there's a little hole that you have to put your thumb over in order to get suction...I didn't realize that. Oops. I guess we'll have to give it try it next time. Problem is, I wish there was no next time. I don't know why she's doing this again. She went all week last week without even one incident. We definitely need some continued prayers in this area.

Monday, August 16, 2010

No more throw up

Today has been an off day for Reagan. She slept well last night waking at 7am this morning with another major blowout. Thank goodness for washable bed pads! She made a few gaggy faces this morning so I wasn't so sure about taking her to feeding therapy but she seemed better after a while so we gave it a try. She fell asleep right before we got there so her therapist started off with some stretching and eventually Reagan woke up. She actually woke up with the giggles...which was awful cute. She had a little applesauce and even chewed on some dried mango. Then we came back home and she just took it easy. She was still very serious and quiet most of the day, although she did throw some laughs in here and there. Then tonight I was cooking dinner, she was laying on the floor and I could tell she was getting antsy. I walked out of the room for just a second and I heard a gagging noise (I actually thought it was the dog at first), I ran into the room and she had thrown up all over herself. Of course the suction machine was no where near me so we just had to make due. An hour or so later Mike was holding her and she threw up again. Poor thing...two big throw ups. She just looked miserable...and tired. Not sure where this nausea came from but I sure hope it goes away. Please continue to keep her in your prayers!

Sunday, August 15, 2010

Continued prayers

Reagan slept well again last night (of course that's still with the help of clonidine). She woke up this morning having lots of chorea, specifically in her arms, she kept clawing at herself. Today she's been much less animated, very quiet and serious. Only a few giggles for Daddy and no real smiles to speak of. Maybe she's mad that Grandma didn't come to visit this weekend. She's taken two good naps today, which for her is very out of the ordinary. Whenever I see a change in behavior I always get nervous. I definitely want to ask everyone to continue to keep her in your prayers. I know the prayers that were said last weekend were the saving grace for her. She went from being the absolute worst we've seen her, to miraculously better the very next day. That's not a coincidence. It was an answer to prayers...

First nap...

Second nap...

Saturday, August 14, 2010

Another good day

Reagan kept waking up last night...each time she'd fall back to sleep before I could even get to her. And then finally this morning I figured out why...a big stinky dirty diaper! Poor thing, no telling how long she layed in that one. It's a good thing though because she was going on 7 days without one. She has been a little groggy today, we've seen lots of yawns and she even took a little nap, very unlike her. Overall she's been in a great mood again today but she's been super spitty...it's a constant drip. Lots of smiles, squealing, babbling, and laughing though. This allowed us to get a lot done (Mike especially). Mike assembled another shelving unit for Reagan's therapy room (which I quickly filled to the top), he installed the hardware for her therapy swing (which required time in a ridiculously hot attic), and I tried to maximize space by rearranging things in her room. Even though it's a huge room, this child has so many toys, I don't think we could fit one more in there!! We may have to start throwing things out when we bring new things in! Here's to another good day for our little one! Thank you so much for all of your prayers...

Friday, August 13, 2010

New stander

Mike is home...he got back from Canada this morning around 8am. Reagan slept well again last night...thank goodness. I have to admit, I had my doubts. She was just so hyper and talkative last night I was afraid she was never going to go to sleep. But 10min after the clonidine, she was out! It's funny, how medications seem to work so well on her when she's healthy but the second she gets sick, nothing works! She's been in a great mood again today, "talking" and squealing up a storm. She does it more when you're right beside her or holding her, it's like she's really trying her best to communicate with you. Mike and I were talking tonight, when Reagan is like this it's hard to imagine how bad things get sometimes (like last weekend)...and when things are bad it's hard to imagine how good things can be (like this week). It's even more hard to imagine that you can have such horrible days followed by such wonderful days. This girl...always keeping us on our toes. Her stander was finally delivered today. I spoke with someone from another equipment company and they told me that when Reagan outgrows this stander (even if it hasn't been a full 5yrs, which it won't), Medicaid will still pay for another as long as we have documentation that she's outgrown it. So we decided to just stick with the Leckey Squiggles Stander we had already ordered...it fits her like a glove (so much better than her other stander). Of course there was still a problem. They had ordered the wrong tray, so they had to take it back and reorder a new one. Hopefully that will get taken care of fairly quickly so she can begin using it. Please keep us in your prayers for a nice uneventful weekend, we certainly need it.

Thursday, August 12, 2010

Spunky

Reagan slept in a little today...she didn't wake up til 9:30am. I love it when she sleeps, but sleeping in always makes me nervous. She woke up feeling spunky today...not nearly as calm as she was yesterday. More movements (which I'm not happy happy about) but still sweet and smiley. She had PT this morning and then did some time in her stander. Her OT was sick on Tuesday so we passed on a visit today, just to be on the safe side. We did take her for another spin in her waterwaybabies pool though. I love the way she's able to move around in this thing but I hate that it's such a pain to fill up and empty out (not to mention all the water we're using each time). She enjoyed herself though and was extra spunky tonight. Lots of babbling and squealing. I finally had to get my Dad to video some of it because it was just too cute (make sure you pause the blog music at the bottom of the page so you can hear her "talking").




video

Wednesday, August 11, 2010

Great day

Reagan has had a great day today. She slept through the night last night (good for everyone) and she's been all smiles all day long. First thing this morning we went in for her abdominal ultrasound. She was great the whole time. Not sure what if anything the ultrasound will show but they said they won't have the report to the doctor til Friday. We came home and just took it easy. No therapies today and summer school is over so not a lot going on. Reagan's been much more calm today. Less movements, definitely more relaxed. And did I mention the smiles? Smiling all day long. So good to see that. Today they delivered Reagan's suction machine (sure wish we would have had that on Sunday). It took a while for her pediatrician's office to finally send the orders but once they finally did, the process was pretty quick. To my surprise our primary insurance actually approved it so we didn't even have to go through medicaid. We don't plan on using this on a regular basis, but it sure will be nice to have when we need it (hopefully we won't need it for a while). Please continue to keep Reagan in your prayers...we need more good days!

Tuesday, August 10, 2010

Licking

Reagan was a little resistant to sleep again last night. We gave her some clonidine which helped and she fell asleep but as soon as we laid her down she woke right back up. So we sat up with her for a while longer and she fell back to sleep. Again when we laid her down she woke back up. Mike laid in bed with her for a little while but she was just not falling back to sleep. So finally he went to bed and I listened to the monitor for her (ready to get up again at any moment) but I guess she finally fell back to sleep because I never heard another peep out of her. Yeah...I think a sleep study is probably in order. Today Reagan's been in a pretty good mood. I don't think I've seen a gaggy face all day, so that's great. She even had PT at the house and tolerated it well. While the chorea was toned down a little today, she started up with another obsessive behavior...licking her hands. Her little tongue was poking out of her mouth and she would rub her hands across it over and over...made for some stinky hands. I didn't really care though, I was just happy to see her not gagging with something near her mouth. My dad came in this afternoon to help out while Mike is gone. Below is a picture I took just as Reagan was dozing off tonight (but woke back up, of course)...

Monday, August 9, 2010

Prayers for continued improvement

Last night we gave Reagan one hour to improve or we were going to the ER. We gave her a dose of clonidine and waited. Amazingly enough the clonidine seemed to help her nausea (I think because it calmed her down) and within the hour she settled down and started looking sleepy. She fell asleep and slept through the night (thank you God). This morning she seems improved (thank you everyone for your prayers). She's still off and looks rather pathetic at times, but the movements have definitely lessened (see video below) and we've only seen gaggy faces (no actual gagging). We took her in to the pediatrician this morning and she ordered a bunch of labs (all of which came back normal). She said Reagan's tummy was making lots of gassy noises and if we didn't see big improvement by tomorrow, she wanted her to have an abdominal ultrasound to check everything out (scheduled for Wed am). It's a little frustrating because we still have no clue what could have caused all of this. We took her back off both meds we started last week (the antibiotic and Singular) just in case either of those were contributing but more or less we're still clueless. We have seen some glimpses of our happy girl today...she's actually connecting with you when you talk to her and we've even gotten some smiles out of her (such a huge improvement to the completely unresponsive girl from this weekend). I'm so glad that she seems to be improving (definitely an answer to prayers) especially since Mike is leaving the country tomorrow to go to Canada for business. How's that for timing. Please continue to send some extra prayers up for our little one...they're working.

Chorea video

I've mentioned Reagan's chorea (uncontrolled movements) many times but I don't think I've ever posted a video to actually show you what I'm talking about. This video is from yesterday...I spared you the vomiting but she does make the gaggy face a couple times. This just gives you an idea of what I'm talking about (although you can't really get the full picture unless you hold her an feel the full force of these movements and how difficult it is to stop them).

video

Sunday, August 8, 2010

Out of control nausea

It's been another horrible day. Horrible. Reagan was up all night last night. She didn't sleep a single wink. I was up with her half of the time and the other half she was in our bed, kicking, squirming, gagging and whacking me in the face. It was a horrible night...and a horrible day followed. The chorea/movements have been out of control and she's been vomiting, retching and choking all day long. Seriously...this is the worst nausea I think we've ever seen out of her. It's unrelenting and painful to watch. I've been in tears all day. I just can't take this anymore. I feel totally and completely helpless. I can't do anything to help her. If we could only get her to go to sleep, at least she'd have some sort of relief from the constant movements and nausea. We've considered taking her into the ER (I actually even have our bags packed), but we were in patient for an entire month last year because of her nausea and there wasn't a single medication they gave her that helped in the least. I just don't know what to do. I'm losing it right now. Prayers are desperately needed. Prayers for sleep and a stop to this nausea.

Saturday, August 7, 2010

Frustrated

It's been another one of those days. And oddly enough it started fairly well...with Reagan sleeping through the night last night. She has been completely and totally miserable today. Whining, crying, and moaning all day long (and of course, we have no clue what's wrong with her). She's moving constantly, clawing at her arms, crunching herself in half. She's been so tense, her legs and her arms kept trembling. She really didn't have one good moment all day. It's been an excruciating day for all of us. Tonight I had to give her the clonidine at 8:30pm (way earlier than I normally would give it) just in an attempt to soothe her. So far she's still awake (not good) but at least she's not crying. Tonight I find myself feeling very disheartened. Why does Reagan have to go through this? This is no life. She's miserable. She has a couple good days sprinkled here and there but that's it. When she was having seizures I prayed and prayed and prayed for them to stop. If they would only stop, everything would get better. Well, that hasn't exactly been the case. Don't get me wrong, her seizures stopping was the single best thing that's ever happened to us (something I thank God for every single day)...but many problems still remain and other new things have popped up as well. The chorea. The chaotic movements that are obviously neurologic and often times so disruptive we actually have to hold Reagan down. The vomiting and nausea, for which there's no medication that helps. Her getting sick every week or so. She used to never get sick...we rarely ever went to the pediatrician's office (now we live there). We thought she'd take off developmentally...hasn't happened. We thought she'd sleep better...hasn't happened. And then the mitochondrial disease diagnosis...well most days I just ignore it. I don't even want to think about the long term consequences of it...because there is no long term. So in general I just take each day as it comes, but on days like today it's hard to even handle that. Please keep those prayers coming for my little one and for her frustrated parents...

Friday, August 6, 2010

Not a sleeper

Reagan, Reagan. She was a turkey again last night. She didn't go down until after midnight and then was up from 2-3 and 5-7! What are we going to do with this child? She's never been much of a sleeper. Thankfully she was in a good mood both times...she and I had some time to catch up on some of my DVRed shows. During the day today she seemed to be in good spirits. She had PT, the teacher, and OT all come today...and Reagan tolerated all of it fairly well. Tonight was another story though. She's been very whiny all night...ranging from fussing to full out crying. And now that I think about it, she's been doing this for the last I don't know how many nights. It's another one of those frustrating times where you just wish she could give you some sort of hint as to what is bothering her. If I had to guess tonight, it would be exhaustion. From the time the fussing started, the yawns were going full force. I've never seen someone yawn so much and not fall asleep. Her little eyes were all red and puffy, you could just tell she was beyond tired. Finally I gave her some clonidine...I'm not crazy about this med because it seems that when we give it to her, it knocks her out but doesn't keep her asleep for more than a couple hours...but I really had no other choice. She just could not fall asleep on her own. So frustrating to watch. Please continue to keep her in your prayers...I'm still waiting on those good days (and good nights)...

Thursday, August 5, 2010

Healthy days needed

Last night was a good night. Reagan was giggling up a storm when Mike got home (just in response to hearing his voice), it's good to see her loving her Daddy again. I was a little worried because only moments after laying her down last night, she was back awake. Thankfully she didn't fuss and even though she had a hard time staying asleep, I think she finally dozed off and slept the whole night through. Today she's had moments of being completely content and then moments of being fussy, stressed out and tense. She's also taken a couple naps which is way out of character for her (but appreciated when she's fussing). I'm hoping the antibiotic she started yesterday will kick whatever sickness she's been fighting so she can settle down and get back to her happy, healthy self. It's so frustrating...it seems like we're back to the point where we just can't get her to stay healthy for more than a couple days. We need more than a few good days in a row. I spoke to her mitochondrial doctor this week (emailed) and let her know of my frustration. She wants to see Reagan sooner than her scheduled December appt. They moved her up to Aug 31st, so I'm hoping we can come up with some sort of game plan to get Reagan on the right track. Prayers are certainly appreciated.

Wednesday, August 4, 2010

Sinus infection?

So Reagan continued to sleep...that is until 4am this morning. She woke up crying, I picked her up, changed her soaked diaper, and held her and immediately she was out again. I put her back in her bed but 30min later she was crying again. I picked her up and held her, she fell asleep again but it only lasted another 30 min or so. This time I put her in bed beside me and I just held her...that seemed to help. She'd wake momentarily but I'd just hold on to her and she'd go back to sleep. She and I both laid there til about 8:45am. She woke happy but still having lots of chorea. She's been on edge all day. Tense and having so many movements we had to hold her down to give her some sort of relief. She did get a little fussy a few times, but each time she took a little nap and felt better when she woke up. We took her in to the doctor's office and her pediatrician thinks she has a sinus infection. Not sure if she's right or not, but Reagan's nose is a little gunked up and she has been coughing when she wakes up, so maybe. She put her on Singular (for allergies) and Omnicef (another antibiotic)...so hopefully this will clear her up and get her feeling back to herself again. Please continue to keep her in your prayers...

Tuesday, August 3, 2010

Too sleepy

Reagan fell asleep last night at 9:30pm...she was pretty cranky, I'm guessing she was just exhausted from the lack of sleep. Then she woke crying only an hour later but Grandma rocked her and got her back in bed by 11pm. I woke up at 5am to take my mom to the airport and I was thrilled when I realized she was still asleep. I came back home, went back to sleep, got up and gave her all of her medicines...and she was still asleep. She actually didn't wake up til 11:30am and that was with some help from me. She seemed happy when she first woke up, we got her dressed and fixed her hair but the crankies set back in. Her OT came to work with her and Reagan cried most of the time. She was having some gas though so that was probably part of it. Her OT finished up with Reagan laying on her side and quite content...the next thing we knew she was back asleep. She slept there for the remainder of the day. Not sure what this means for tonight. She could either sleep the whole night through or wake up in the next few hours and stay up all night. Let's pray for sleep. I don't know if she's sick and trying to sleep it off or what. I'm glad to see her sleeping but at the same time it's A LOT of sleep and I know it's probably because she's sick. With what, who knows. I've already made an appt with her pediatrician for tomorrow. We'll see how she's doing tomorrow but we'll probably be going in just to get her checked out. One concern I do have is that Reagan has been waking coughing lately. She only does it when she wakes up, but it still makes me nervous. I spoke to her pediatrician over two months ago about getting a suction machine for her...especially for those gaggy days when she throws up multiple times. Her instinct is to swallow it back down instead of spitting it out. I'm in constant paranoia about aspiration. I've just heard of too many kids that are healthy one day and gone the next because of aspiration pneumonia. Scary. Please keep it in your prayers that we can get Reagan healthy and keep her that way.


A mouth breather just like mommy!

video
A video from last night...Grandma making Reagan laugh (sorry it's so dark).

Monday, August 2, 2010

Tough nights

Last night was a doozy. Reagan was so fussy and gaggy, not a good combination. She fell asleep around 10:30 (with the help of 1/2 pill clonidine), then she was awake again a little after midnight. I got up with her and watched some quality late night tv but she was not getting tired and she was progressively getting more fussy. Everyone in the house was up at some point. Grandma got up for a little while at the beginning and then went back to sleep until she heard more cries around 3am. Thank God for Grandma because Reagan was just not happy with me. She was better for Grandma and fell fast asleep in the rocking chair by 4am. Unfortunately she only slept til 7:30am but she did wake in a better mood...still a little on edge but definitely less gaggy and a little less fussy. Less fussy during the day that is...tonight she went crazy again. Lots of crying. We're all running on empty here. I'm not sure how much longer we can take this. Nonstop crying and no sleep for any of us. I don't know what is wrong with her...why is she so upset? When are things going to get better? Please say some extra prayers for our little one...we need her healthy ASAP.

Sunday, August 1, 2010

Gaggy

Last night I reduced the Clonidine dose (Reagan hasn't been sleeping much on 3/4 pill, but I didn't want to just stop it altogether either)...and with the reduced dose she actually slept better! She slept from 11pm-5am. I was glad to just get a string of consecutive hours together of sleep. Of course, she was wide awake at 5am! It's funny she actually woke saying Ga! I haven't heard her say Ga Ga in quite a while and today all of a sudden she's said it 10+ times (even before Grandma got here)...it was like she knew her Grandma was coming today! Her mood has been pretty good, that is except when Mike takes her. The last couple days she's really been giving her Daddy a hard time. She'll be fine and then he'll take her and immediately she'll get the big lip and frowny face and start crying. No clue what that's all about...usually she's a Daddy's girl. Today Reagan's had several dirty diapers (very unlike her) and been extremely gaggy all day. She's been super nauseous, retching and making gagging faces nonstop. She's super sensitive, just giving her a kiss on the cheek can trigger a retch. She threw up three times tonight...but it didn't seem to give her any relief. How she's throwing up so much (with no food in her stomach), I don't know. And then now she sounds all junky in her throat...worries me. Poor thing. Please pray that this nausea passes. She's also still having a lot of movements. Sometimes you pick her up and she kicks her legs around so much it's hard to hold onto her...it's almost like she's having fits of the chorea where it escalates and then tapers back down. We already have the new medicine (tetrabenazine) to try for the chorea but I'm just nervous about trying anything new. We've got enough problems to deal with right now without adding a new med and side effects to the mix. I'm not sure what to do about it. I'm still on the fence.



Looking cute, but about to make a gaggy face.