Thursday, September 30, 2010

Another yuck day

Ugh. Today was not the good day we were hoping for. Things have been worse. Reagan probably only slept an hour or so last night. I kept checking the monitor continuously and every time she was awake and moving around. She didn't start fussing til 4:30am so I got up with her and we've been up ever since. The nausea has actually gotten worse today. Lots of retching and vomiting. Lots. Moving her mouth around nonstop trying to manage the never ending production of spit. It's been a pretty crummy day. You can just tell she's miserable. She had a slight fever this morning and her right ear has been red (maybe b/c of the ear infection, who knows). She's been on edge all day, not too fussy, just tense and uncomfortable. You could hold her but really only in one position. Try to lay her down and immediately she would start fussing. This afternoon she really turned the crank on and cried from about 5:45-8:45pm. Around 9pm she started to show a little promise. The crying stopped and we gave her a bath. We even saw a few smiles and definite eye contact. A glimpse of our sweet girl. I'm praying that tonight she'll get a full night's sleep and wake up well rested and happy as can be.



A few mornings ago sleeping in (definitely not last night). Notice the scratch on her nose...even though I put that thing on her arm to hold it down she still managed to get a good swipe at it!

Wednesday, September 29, 2010

Bad day #3: Increased nausea

Reagan slept fairly well last night. I woke up around 4:30am and found her wide awake, kicking around in her bed. Not making a peep but no covers whatsoever. I went in, moved her back to where she started (she had scooted down her wedge a little), covered her back up and put the thingamabob back over her arm (so she couldn't hit/scratch herself). She went back to sleep fairly quickly (so did I) and slept in til 8:15. She woke up in the same cranky mood we've been seeing. We got her dressed and loaded up and headed out to her Immunology appt. They were running way behind and we sat in the waiting room for over an hour. Fortunately I really like the doctor and she always takes her time talking to you (so I guess I'll excuse the tardiness). She was really pushing the vaccines again. Her point was that Reagan already has a suppressed immune system (Hypogammaglobulinemia) and because she has mitochondrial disorder she is more likely to have a hard time coming back from a major infection. Reagan only got her 2month and 4month vaccines. She started having recognizable seizures at 5months (although it's possible she was having small seizures somewhere between 2-4months) so we decided against getting more vaccines. I certainly believe that in some children vaccines can trigger things such as seizures (or autism). I know of a couple of kids that their parents are positive that vaccines caused their child to start having seizures again. Now that Reagan is seizure free...I don't know if I'm willing to take that risk. I don't think I am. The doctor took a throat culture just to check for strep throat (and triggered a big huge throw up) and she did find an ear infection in Reagan's right ear. She prescribed some Augmentin and wants us to follow up with the pediatrician to make sure that the ear infection clears all the way up (and is not linked to this nonstop cycle of good and bad days). We came home and Reagan continued to be very nauseous. She threw up quite a few times and was making lots of gaggy faces. Hopefully that means she's at the end of her bad cycle. I'm praying tomorrow is the start of her good days. This afternoon (shortly after we got back from Reagan's appt) I had to leave to go to Samuel's funeral. Very sad. I can't think of anything more depressing than a funeral for a 4 year old. It was a beautiful ceremony and the church was packed. This little boy touched many lives. Please continue to keep the Knight family in your prayers.

Tuesday, September 28, 2010

Less crying, more fuss

What's funny is that Reagan was fussy and crying nearly the entire day yesterday...but as soon as Daddy got home, she was good. Not smiling and happy, but semi-calm and not crying. I don't know if she cried once all night. And what's better...I laid her in bed and never heard another peep out of her (a rare occurrence when she's not feeling well). I think she probably woke up at some point because she had kicked off all of her covers (and generally she doesn't move around much when she's asleep) but we never heard her and as far as I'm concerned, we all had a good night's sleep. She did wake up she was rather cranky. I'd say she has been a little less nonstop crying and a little more moany/fussy today. If you lay her down, she'll cry...a lot. But if you're holding her and trying (nonstop) to make her comfortable (and holding her arm down)...she's OK...still fussy, but OK. She's still very tense. Lots of chorea in the arms and she'll kick and flail around if you're not holding onto her tightly. She seems to prefer the over the shoulder position...where her head rests on your shoulder and her tummy is up tight against you (which causes her button to leak). Oh if only we knew what was bothering her. We did go in today to see the new GI doc. He seems to think that Reagan's cycling bad/good days are less related to GI motility (which you'd see more on a daily basis) and more related to her neurologic/mitochondrial issues. That's not to say that it's not GI "related"...because with all of the vomiting, it obviously is. He just thinks it's probably something systemic (like something being off in her blood work) and less likely to be related to reflux or motility. His suggestion...eeny meeny miny moe. Here's several medications...all with varying risks and side effects. Talk it over with her doctors and pick one. Boy...this all sounds way too familiar (can you say, seizure medications). I'm not leaning toward any of the options at this point. I think we'll have to discuss it with her neurologist. One of the more likely options is Elavil and the other is Domperidone (the former has the potential to interact with her seizure medications and the latter would have to be ordered from Canada and is from the same family as reglan which has been linked to tarditive dyskensia). What to do, what to do. Another suggestion he made is to try a new probiotic...BioGaia. Certainly worth a try. I just ordered some online. So that's that. Now on to Immunology tomorrow. Reagan was good again tonight for Daddy (of course she was), while I got out and played some tennis. Hopefully she'll sleep again tonight.

Monday, September 27, 2010

Not a happy girl

What a difference a day makes. Today marks bad day #1. We noticed a change last night just before bed. She was getting a little antsy and fussy, which was very out of character for that day. I gave her clonidine to help her sleep and two hours later...she was up. That's usually how it starts. She woke up fussy but was OK for a while. We watched lots of DVRed shows and then the crying set in. I was exhausted and not at all up for that, so I tried laying her back in bed. That wasn't working either. Finally around 5:30 I gave her another dose of clonidine and eventually she fell back to sleep. She woke again about an hour later, fussing and crying, but finally fell back to sleep. She slept in til 9:30am when we had to pull her out of bed and throw her in the car to get to her 10am Ophthalmology appt. Needless to say, she was not too happy about that. She fussed and started crying right before we got there. She cried in the waiting room, cried for the nurse who was checking her interocular pressures, and then cried for the doctor. Not really the most productive of appts. Her eye pressures were high, but they blame that on the fact that she was crying when they checked them. I guess it's a good thing we have another eye appt next month with the doctor that specializes in CVI...she can check her pressures again (hopefully on a good day). Then we came home and Reagan cried most of the drive back and then fell asleep on the lap of our nurse (thank you God). She cried and fussed all afternoon, with short periods of napping interspersed between. She's been quite pathetic. There's an increase in chorea but it seems to be mainly in her left arm (the one she likes to whack herself in the face with). She's also been very sweaty/clammy all over. She's had two dirty diapers today...making me wonder again if all of this crying and bad days could be GI related. I guess it's a good thing that tomorrow is her appt with the new GI doctor (that specializes in motility). Maybe he'll have some ideas. Please pray for guidance for him in diagnosing exactly what is going on with Reagan...as well as some sleep for my girl and less bad days!

Sunday, September 26, 2010

Vote to help kids like Gwendolyn

There's only one week left...please help me support this cause (it takes less than a minute each day). SMA is a terminal, degenerative disease that results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves. SMA impacts the ability to walk, stand, sit, eat, breathe and even swallow. The Gwendolyn Strong Foundation (GSF) is a nonprofit focused on raising global awareness of SMA and funding to accelerate promising research. They are in NASCAR champion Jimmie Johnson's Samsung Helmet of Hope voting contest and have a chance to win $20,000 to help END this brutal disease. They are currently in a VERY tight race and YOU can help them win. It's simple. Vote daily through September 29th for GSF at VoteForSMA.com. Voting is simple, free, takes about 20 seconds, and no personal information (e.g. email, name, etc.) is required to vote. AND for added impact please sign up for their DailyVoteReminder.com so you never miss an important daily vote in this contest. There's only a few days left and they are in a tight race for 1st place. Every vote helps!!

Reagan had another good day today. She slept in til 9am, she's been rolling a lot and has been happy and content all day. She didn't take a nap all day, but then around 7pm she dozed off. We have noticed an increase in sensitivity today. Just the slightest breath of air on her face makes her gasp and shut her eyes (and at times appear gaggy). I'm afraid this is just the first hint of what's to come. Today was good day #4...we usually don't get more than 4-5 good days in a row. Please continue to keep her in your prayers. We've got a busy week this week with doctors appts M-W (Ophthalmology, GI, & Immunology)...we're hoping that one of these doctors might have some ideas on how to break this crazy cycle she's been on.

Saturday, September 25, 2010

Super sweet

Reagan has been a real sweetheart again today. She slept the whole night through and then all of us slept in til 9am. She's been super sweet and rolling all over the place again today. OK, not so much all over the place, but she pivots herself in circles. My mom has already called to yell at me for not posting a video...but I somehow managed to misplace the charger for our video camera and it's completely dead right now. I don't know if all of the rolling is wearing her out or what but she took two naps again today...very unusual for her. We're still having the same issues with getting her to pee. She woke up again this morning without a wet diaper. I gave her the Lasix and finally 2.5hrs later she went. I was definitely beginning to get worried. I'm not sure what all of this is about...Reagan's pediatrician was going to call and talk to a specialist to see what they thought. We've got a super busy week next week with lots of doctors appts and Samuel's funeral. I'm hoping our Wed/Thurs/Fri nurse will be back by then. We sure miss her and I've become so dependent on her. Please continue to keep Samuel's family in your prayers. You can make a donation to the family to help cover medical and funeral expenses by clicking here. Please take some time to love on your little one(s) and be happy for what you do have. I think often times we get so wrapped up in our own circumstances and immediate problems (vomiting, developmental delays, seizures, etc...), we don't think about the fact that things could be so much worse.




I walked away for a minute and came back to find her this way (her head should be on the wedge, to the left of the screen).

Friday, September 24, 2010

Rolly Polly

Sorry...I'm still a little off. It's hard for me to just continue on with my posts here as if nothing has happened. Another child has lost his battle with mitochondrial disease and I am heartbroken. Do you now understand why we so desperately need to spread the word about mitochondrial disease and to get more funding for this devastating illness? I do need to keep this going for Reagan's sake...but please keep the Knight family in your prayers as they deal with something no parent should ever have to face.
Reagan slept straight through the night last night and then woke up this morning in a good mood. She was a little spitty/gurgly and coughy, but happy. I think she's got some sinus drainage going on (I can certainly relate). I noticed she was a little snorty yesterday and that's been the case today as well. Hopefully it's just allergies. The last thing we need is for her to get sick. Today we've been dealing with another unexpected issue. Reagan is not peeing on her own right now. In the past we've always blamed this on increased doses of Periactin, but she's been off of the Periactin for over a week and now all of a sudden she's having problems again. This started yesterday when she woke up without a wet diaper. She went all day without one and then we finally gave her Lasix and she went. So this morning I was hoping she'd wake with a big wet diaper but no. Nothing. So we gave her another dose of Lasix and waited. Thankfully she went within the hour. And then again an hour later. Whew. I sure didn't want to have to take her in to get cathed again. This morning she had a make-up session of vision therapy. She seemed to do well. Then afterward the nurse (who is filling in for our nurse) read to her and she fell asleep. Very unusual for her to just fall asleep mid morning like that. She did look awful cute though, laying there on her tummy with her legs crossed. She slept straight through OT but woke up and had a new found energy. We couldn't keep her still (in a good way, not an uncontrolled chorea way). She was rolling onto her side over and over again (and all the way over onto her tummy)...she even tried several times to make it full circle but her arms just wouldn't cooperate with her. She'd get onto her tummy and rub her nose on the blanket and put her hands in her mouth but she couldn't turn herself all the way over. Such a turkey. She was doing it again tonight for Daddy and then the next thing we knew she was asleep on the floor. Falling asleep early is not her usual behavior...but hopefully she just wore herself out with all the rolling. Sweet dreams little one...

**Update**

It's mitochondrial awareness week this week and today I got the most shocking, worst news I could get. Little Samuel, we just went to his 4th birthday party a few weeks ago, passed away last night. I'm in complete and utter shock. There are no words. No words. What a horrible disease. It takes our little ones away from us way too soon. First, Gavin and now Samuel. I can't even believe it. Please lift Samuel's family up in prayer right now. I can't even imagine what they are going through.

Thursday, September 23, 2010

Feeling better

When I laid Reagan down last night she wasn't 100% asleep. Her arms were still twitching a little, so I put something over each arm in an attempt to hold them down and prevent her from whacking herself if she woke up. About an hour or two after laying her down she was awake again. I got up with the intention of picking her up, but then I thought...if she's not crying, I'll just let her be (and get up with her when she does start crying). I fell asleep and never heard another peep out of her. I woke up a few times and looked at the monitor and each time she was asleep. She actually even slept in, not waking til right around 9am this morning. And the good part...she woke with a smile. Big, wide eyes and happy as can be. She's been totally mellow all day today. Not groggy mellow, just calm mellow. And smiley. And even though she was moving a lot...licking on her hands and rolling onto her side...it seems to be more intentional movement (not chorea). She had both PT and OT this morning and both therapists were quite impressed with her head control. Then this afternoon a speech therapist (from the school) came by and worked with her a little. It was a busy day considering she hasn't had any therapy or school in a couple weeks. She was not gaggy at all today...that is until tonight. We were sitting with her a Bible study and all of a sudden she started retching. Very strange. She got over it quickly, but it still made me a little nervous. I was hoping we were done with that for a while. Thank you all so much for your words of encouragement and prayers during Reagan's stretch of bad days...please keep her in your prayers for more good days to come. Also please say some extra prayers for Reagan's little friend Samuel. He's in the PICU right now and can definitely use some prayers.

Wednesday, September 22, 2010

Sick of bad days

Last night was a horrible night. Reagan didn't sleep for more than 10min at a time. She was up crying, fussing, moving nonstop, whacking herself in the face...I seriously thought I was going to go insane. Seriously. It's so hard to even hold onto her when she gets like this. The chorea is out of control and she has super human strength. You can't rest for even a moment...you have to restrain her nonstop. Such a long night. The only sleep I got is when she finally stopped crying around 6am, I laid her in her bed with her arm weighted down (so she wouldn't hit herself), and I slept til 8am. That's it. Not a good day for our Wed/Thurs/Fri nurse to be out (she had a family emergency and is out the rest of the week). Thankfully our Mon/Tues nurse was able to come and fill in around 11am. I was watching the clock and counting the minutes until she arrived. Reagan was fussing and had already thrown up once. I was running on empty. Once she got here I did manage to get a 2hr nap in. I wish I could say that I felt rested. Instead I have a headache that I just can't seem to get rid of. I am so ready for these bad days to be over with. Today marks bad day #4. Either tomorrow or the next day things should start getting better...so weird that it's that predictable. I need tomorrow to be better but I'm doubtful. Reagan has turned up the nausea tonight and has been making tons of gaggy faces and had another throw up (that came out of her nose...poor baby). Prayers for sleep, less nausea, and better days are appreciated.

Tuesday, September 21, 2010

Long night (and day)

Last night was another rough one with little miss Reagan. She never slept longer than an hour at a time (usually 30-45min) and then would wake up screaming, crying. Not fun. There really wasn't much sleeping involved (especially on my part). I guess it's a good thing that at least she was falling asleep...she just wasn't staying asleep. She woke crying again around 2:30am. Grandma finally got up at 3:15 because of the crying. She rocked Reagan til 4:30 when she fell back to sleep. We put her in bed and then left before 5am for the airport. When I got back I found Reagan in bed with Mike. It didn't take long before she was awake and fussing again. Poor girl. I know she's exhausted but she just can't stay asleep! She continued to cry and yell all morning. Finally around 1:30pm the tide changed and she settled down. She wasn't "happy" but she also wasn't crying anymore. Just that blank, wide-eyed stare. That only lasted about an hour and a half and then she was back to crying and fussing again. She continues to be very tense and there has also been a big increase in chorea/chaotic movements. She also has very clammy hands and feet and threw up again tonight. Ugh. When is this craziness going to end. I'm still waiting on a call from her GI doc (who is waiting on a call from her neurologist). Hopefully they'll have some idea on something to curb this nausea. Please continue to keep her in your prayers.

Monday, September 20, 2010

The bad days are back (and Mitochondrial Disease Awareness Week)

Last night was a mess. Reagan started getting fussy about an hour or so before bedtime. She was hyper alert...with the crazy wide-eyed look. It was beginning to look like we were in for a "bad day". I gave her the clonidine but it took her longer than normal to fall asleep (a bad sign). I held her for a while until I was sure she was totally out but when I tried to stand up with her to go lay her down, she immediately woke crying. That set the tone for the night. Lots of crying, very little sleeping. I spent a lot of time up with her and some time in bed with her...very little time in my own bed and very little time actually sleeping. This morning she has been noticeably tense and I've seen an increase in the chorea. It would seem that today marks Bad day #1. Reagan had an ophthalmology appt this morning but we canceled because she started up on a crying fit just as we were trying to get her ready. It's pointless to attempt an eye appt with her crying. I rescheduled it for next week (an already busy week...we'll be in the medical center for appts 3 out of 5 days)...hopefully those appts all fall on good days. Reagan cried most of the day today. Again, we have no clue what's bothering her, she just cries and yells at us. Something is definitely bothering her. She did have two more dirty diapers today. Very unusual for her. They are particularly stinky diapers associated with lots of gas and mucous. Maybe that's part of the problem. Who knows. She alsohaas two huge throw ups tonight. They both came out of no where and it was miserable to watch. It's just so frustrating, not being able to do anything to help her. Continued prayers are certainly appreciated. On another note...

As many of you are aware, almost a year ago Reagan received the diagnosis of Mitochondrial Disease. While Reagan does not fit the "typical" picture of mitochondrial disease (she's never been typical for anything), it does explain all of the issues we've been dealing with over the years. The extreme irritability (especially as a baby), lack of sleep, muscle weakness, GI problems, seizures, developmental delay, cataracts...the list goes on and on. As with seizures, every child with Mitochondrial disease is different. Not only do their symptoms vary greatly (even within the same family) but so does their prognosis. Most kids will not live into adulthood...making it all the more crucial to obtain more funding for research on this devastating disease. Over the next several months I will be getting together a "Team Reagan" for the Mitochondrial Walkathon in February. For those of you that are in the Houston area, we would love to have you come out and walk with us. But I encourage everyone near and far to support Reagan by making a contribution in her name to the United Mitochondrial Foundation. I'll give you more details on how to do this over the next month or so. In the meantime, please help us spread awareness this week about mitochondrial disease!

Sunday, September 19, 2010

Attitude

Reagan was up again last night...only this time she was not wanting to go back to sleep. About two hours after the clonidine she woke crying, so I got up and consoled her. I laid down in bed with her for an hour or so, but she was not going to sleep and she was getting increasingly fussy. Then we got up and watched some tv. After about another hour or so, she finally started getting sleepy. She kept falling asleep and then waking right back up. I was worried she would never go back to sleep but when I laid her down in bed she drifted right off. Thankfully she slept the rest of the night. She's definitely been more feisty today...she's not the laid back girl from the last few days. My step mother kept commenting on how Reagan never made a peep while we were there...yes, that's because we planned it that way. Every day we were in Austin was a "good day"...but we only get so many good days. Unfortunately we're close to the limit and now we're beginning to see some attitude. Reagan has had a few outbursts today...more so for Grandma and Daddy...it seems she just wants her mommy today. I don't know if that's it or if the two dirty diapers she's had are the problem. She's still licking her hands a lot and she's been very spitty, which sometimes makes her choke but somehow we've managed to avoid a throw-up. I'm still waiting to hear back from her GI doc about trying something new for the nausea. She's supposed to consult the neurologist about it...I'm hoping they'll come up with something that will actually help Reagan. Please continue to keep her in your prayers as we head into this next week...if history repeats itself, we may be in for a rough one.

Saturday, September 18, 2010

Home again

Reagan woke up again last night...only this time she was crying. I got up and snuggled with her and she settled back down. She slept through til morning and when she woke up we found the likely cause of the crying...a big stinky diaper (that looked like it had been there for a while). Oops, sorry baby. Mommy has a stuffy nose and can't smell anything! This morning we visited with Mike's sister (who lives in Austin) for a short while and then packed up our car and headed back home. Bear was better on the way home (less whining this time around), I think my Dad's dog wore him out. Reagan was awake and smiling the whole drive...such a sweetie. She's been less coughy today, although she has been a little more spitty. She's been making some faces here and there that look a little like gaggy faces (but not quite). She's had her hands up to her mouth a lot today...licking on her fingers and making me nervous that she's going to bite herself (although she usually only does that when she's not feeling well). Her hands and feet were clammy this morning but tonight they're back to normal. Today is good day #4 so I'm getting a little nervous about what's to come. My mom is coming in tomorrow to see Reagan, so hopefully that will help keep her happy. I'm just happy to be back home safely and looking forward to sleeping in my own bed tonight! Here's a few pics from last night and today...

Chilling with Elmo


Reagan enjoying herself at my stepsister's house


In the car on the way home...all smiles


At home playing with her new favorite toy, a little stuffed cat (thank you Karen)

Friday, September 17, 2010

Got mold?

Sleep last night was slightly interupted. Reagan woke up about two hours after her dose of clonidine. Mike got up and laid in bed with her and apparently she went back to sleep. He stayed in there where he tossed and turned most of the night (and I heard it all on the baby monitor, so I didn't get much sleep either). Reagan woke up many times but each time she would fall back asleep quickly. I wonder how often she does that in the course of a regular night. She's been in another happy, smiley mood all day today. Still coughing that dry cough here and there throughout the day, but tonight it was more of a spitty, chokey cough. I have to admit though, I've been coughing too (and my throat is killing me). I'm not a cougher either, the only thing I can think is it must be allergies. I've had a runny nose and I've been sneezing a ton, Mike's been sneezing, my dad has been sneezing...and we saw today on the news that the mold count is through the roof here in Austin. Maybe that's it? Who knows. I guess we'll find out tomorrow when we go home. Hopefully we'll all improve. This morning we played some tennis with my step sister Jennifer and her husband Nathan. Nathan and I kicked some butt (which is funny because both Jennifer and Mike are very competitive and hate to lose). I haven't played tennis since before Reagan was born and it's definitely something I'd like to get back into (Lord knows I need the excercise). Then tonight we spent some time over at Jennifer and Nathan's hanging out with their kiddos and discussing the Bible. It was quite the conversation running late into the night. I promise to post a couple pics tomorrow...it's too late now. Please keep us in your prayers for a safe trip back to Houston and continued health and happiness for our little one!

Thursday, September 16, 2010

Allergy cough or sicky cough

We never heard a peep out of Reagan last night. I think at some point she did wake up, because this morning she was laying there fast asleep with all of her covers kicked off. She woke up around 8am but then Daddy laid down beside her and the two of them fell back to sleep til about 9:30am. Then we went and had breakfast at my favorite place to go in Austin, Kirby Lane. Their apple whole wheat pancakes are the best! Reagan was as good as gold. She just sat in her stroller, half asleep at times, just smiling away. She's actually been great all day. Very smiley and content, albeit still a little groggy. She's had a couple more wet diapers today, so that's good. One big concern is a nagging cough...she did it a few times yesterday but today she has kicked it up a notch. And now instead of sounding like a wet, spitty cough, it sounds more like a dry, sicky cough. Maybe it's just allergies (mine have been horrendous) but it still makes me nervous (and she was running a low grade fever today). We went out and bought a monitor to use tonight so that I can listen to her throughout the night. Hopefully the cough doesn't interfere with her good night's sleep. Please continue to keep her in your prayers...pray for more good days (ie healthy days).

Wednesday, September 15, 2010

Getting better

Things are finally improving for our little one. Reagan slept through the night last night and woke this morning around 8am. I didn't sleep too well though...we didn't bring a monitor with us so I kept getting up throughout the night just to check on her in the next bedroom. This morning she kept opening her eyes and then trying to go back to sleep but we kept bugging her until she stayed awake. She's been less sleepy today but still very lethargic. She fell asleep a couple times but only for a short while...she was awake most of the day today (which was just the opposite of yesterday). We've had lots of smiles today, which is so nice to see. We even got away for dinner tonight and let my step mother and dad watch her. They said she was wonderful...she never made a peep. The only real problem we're having now is lack of pee (from the increase in periactin when she was vomiting) and super crackily, dry lips. She only had one wet diaper yesterday and today. Hopefully we'll see that pick up again soon. I think we need to find a new medication for the nausea. The periactin just doesn't seem to be doing the job and the urinary retention she has with it is difficult to manage as well (problem is neither phenegran nor zofran have ever worked for her). I sure wish that GI appt was sooner. We will surely have another bad cycle pass before we get to see the new GI doctor. Please continue to keep her in your prayers...our little one sure could use some more good days.

Tuesday, September 14, 2010

From bad to off

Last night about an hour before Reagan fell asleep (that's right she did fall asleep), I could see a change in the tide. Her movements calmed down, the retching stopped, she was making eye contact and even SMILING! It was like a huge weight had been lifted. My girl was coming back to us. I gave her the clonidine and 30min or so later she was out. She slept all night and then slept all morning. She needed that sleep. Every now and then I'd see her move on the monitor so I'd go in there and she'd have her eyes closed and be smiling from ear to ear. So great to see that. We decided to go ahead and make our way to Austin today. I spent the majority of the morning packing and then I waited for Reagan to wake up. She never really woke on her own. Right around noon I saw her moving a little so I went into her room and talked to her til she reluctantly opened her eyes. Her poor little lips were all crackily and gunked up, but she was smiling nonetheless. She felt warm but I thought it was just because she had been laying in bed so long all bundled up. When I picked her up she was all sweaty. Turns out...she had a 102.5 fever. I called the pediatrician and she wanted us to bring her in. So we waited til 2pm when the office opened back up. The pediatrician didn't find anything...her ears looked good and her throat was red (but that was probably from all the retching yesterday)...the amazing thing, Reagan was completely unphased by the tongue depressor in her mouth and the swab of her throat. Usually that would trigger an immediate gag. I'm glad it didn't, but that's very strange (especially considering the day she had yesterday). The pediatrician figures it's some sort of virus causing the temp and told us we could go ahead with our travel plans. So finally we loaded up (that includes our 100lb whining Labrador) and hit the road just in time for 5 o'clock traffic. Reagan was very groggy. She fell asleep on Daddy before we left and then slept the whole way there. She actually never really woke back up...she's still sleeping. I hope she's just catching up on all the nights of missed sleep. I'm still a little worried about her. This isn't the "good" day I was hoping for...something's still off. Please continue to keep her in your prayers...she's doing better but not out of the woods yet.

Monday, September 13, 2010

Bad day #3

Reagan was up the entire night last night. Super restless. Legs kicking, arms flailing. Nonstop gagging/retching. It was horrible. We laid beside her, trying to comfort her and restrain her at the same time. It didn't help much. I was an awful night. In one of the few moments where I dozed off for a second, I had this dream. I was holding Reagan and I kept making kissing noises and kissing her cheek. Then all of a sudden, out of no where, she copied me. She made the same kissing noises with her mouth and she did it several times! I was elated. And then I woke up. It was just a dream. Just as almost everything is in our lives. We hope and pray for a few normal things for Reagan...we'd be happy with the smallest of milestone. But we get nothing. Something so simple, that would be considered second nature to most people, would be so enormously huge for us. To us, it's just a dream. Kind of like breaking this cycle. It seems like we're on a never ending pattern of good/off/bad days. Off and bad days make up 2/3 of each month. That's way too many bad days for my girl. What's causing this...no one knows. I'm doing my best to figure it out but there's only so much I can do. I need the help of her doctors to check what needs to be checked...somehow, someway we have to figure what's going on with her and why! Last night and today have been horrible. She's been retching violently and throwing up all day today. She's also doing some startle-y looking things where she throws her arms out and takes a deep breath in (we've seen these before). Not a fan. I sure hope this marks the end of Reagan's bad day streak. She usually has 3-4 bad days in a row and today has been a doozey...hopefully this was her last. We really need some sleep tonight and a good day tomorrow...please keep this in your prayers!

Sunday, September 12, 2010

Bad day #2

Last night was a long one (as anticipated). Reagan fell asleep with the help of clonidine, but that only lasted about two hours. Then she was up...for good. I got up with her for 2hrs and then Mike got up with her for 2 hrs. She wasn't necessarily happier with us holding her, but it was worth a try. Then around 5am Mike laid her in her bed and I listened to the monitor for her. She fussed here and there but she never cried and seemed to be more content laying down than in our arms. At 7:30am I heard her throwing up, so I bolted out of bed to get her. That really set the tone for the day. She's been very gaggy today. She's only thrown up twice (once this morning and once tonight) but she's been retching a lot. She's also been gnashing and grinding her teeth a lot. She's moving non-stop, kicking her legs like crazy, clawing and throwing up her arms, turning her head back and forth. She's just so tense. Holding her is like trying to hold a wild animal. She's frantic and has super human strength. It's so hard to see her like this. I can't really explain how bad it is. It's one of those things you have to see/feel for yourself. And there's really nothing we can do but just ride it out and wait for her to get better. It's horrible. I feel totally helpless. I hope at least she's able to get a little more sleep tonight. Please say some extra prayers for her.

Saturday, September 11, 2010

Bad day

Today marks bad day #1. Yesterday and the day before were "off" days and today was a bad day. Sleep last night wasn't that horrible. Mike got Reagan off to bed last night (so that was a huge bonus for me). I woke up several times to check her on the monitor and there were times that she was awake and times that she was asleep. But overall, she slept better than I expected. When I finally woke up this morning there she was laying in her bed half sideways, wide awake with all of her covers kicked off. From the second I picked her up, the whining began. She's been super fussy/whiny all day today. Super tense. Lots of extension...stiff as a board. Tons of chorea. Now she's kicking up a storm as well. It's very difficult to hold her...it's like holding a Tasmanian devil. She goes through spurts of being calm and completely zoned out, to kicking, arms flailing craziness. She doesn't like to be put down, but also doesn't really like being held. Cold, clammy hands and feet. Last night she bit her pointer finger and it's still red today. Poor girl. She's just not a happy camper. She's already zoned out. When she gets like this, it's hard to see the child we know and love...you really can't even catch a glimpse of her. You can't interact with her at all. You spend the entire day, just waiting for it to end. It sucks...for all of us. I wish somehow we could get to the bottom of this. Why does this happen? Why is she on this continuous cycle of good/off/bad days? Is she getting sick each time or is it as simple as some sort of chemical imbalance? Who knows. I wish we knew. I'm afraid sleep isn't going to come as easily tonight. She's already getting more fussy...it's going to be a long one. Please keep her in your prayers!

Friday, September 10, 2010

Downward spiral

Today definitely was not the better day I had hoped for. Reagan was very restless last night. I woke up many times to look at the monitor and sometimes she was awake and moving around and sometimes she was asleep. She woke for good at 5am. Even though I was exhausted, I didn't stress too much because I knew our nurse would be here at 7am (and I could go back to bed for at least another hour). At 7am I get a text from our nurse saying she's been throwing up for the last hour. Not good. Needless to say, I've been running on empty all day. Reagan has been very tense...more of that wide-eyed nostrils flaring stare. Her hands and feet are cold and clammy. She's been yawning all day, but can't fall asleep. The chorea has picked back up in her hands (with the clawing/hand wringing) and in her head (where she turns her head back and forth over and over again). She's had multiple outbursts of crying for no apparent reason. We're talking holding breath and tears streaming crying. Not good. All of this spells trouble. We actually had (have) plans to go out of town this weekend/next week. Mike took the week off and are supposed to go to Austin (3hrs away) and stay at my Dad's house. I think it's been at least a year and a half since we last went. Right now we're just waiting on Reagan to see when we should go. We want to get there on an upswing instead of a downswing. Hopefully she'll have an upswing before the end of next week...scratch that, hopefully she'll have an upswing soon. These off days/bad days are really wearing on us. I sure wish we could figure out what it is that changes her from smiley and laughing to miserable and crying. I think it's more than just immune issues. Please continue to keep her in your prayers...sleep and good days are desperately needed.

Thursday, September 9, 2010

Off

Sleep was a little off for Reagan last night. She woke at 12:15 or so, screaming bloody murder. It took a while for her to calm down, but then she was wide awake. I picked her up and found a big soaking wet diaper, so maybe that had something to do with it. I changed her and then we sat up for a while watching dvred Rachel Zoe. She fell back to sleep and I put her in bed but she was easily startled. As soon as I laid her down she threw out her arms and almost woke back up. She settled back in and I immediately hit the sheets. Around 6:45am I woke up only to find her wide awake and moving around. Who knows how long she had been up (or if she even really slept at all). Today she's been content but groggy. She had PT this morning and we gave the walker a try, but the head control was lacking. Then we put her in the stander but after only 10min or so she fell asleep. We left her in for a little while, just to get stretched out, and then took her out and laid her down. She slept straight through OT, woke for a short while, and then slept through her "school" time as well. Maybe she didn't get much sleep last night and she's just catching up. Or maybe something is brewing. Today I printed out monthly calendars and went from June-Sept charting her good/off/bad days. Usually she has a string of 2-4 good days, another 2-4 off/starting to get bad days, and then 2-4 really bad days. I don't like those odds. This month we started off with 4 bad days, followed by 4 good days, and now we're on an off day. Ugh oh. I know what comes next. Although, that's not always the case. Maybe we'll get lucky and skip the bad days this go around. That would be nice. She did wake up from her nap in a nice, giggly mood. Her eyes were a little wide-eyed, deer in the headlights-ish but she seemed happy enough. She even had a throw up in between laughs...go figure. Tonight she kept dozing off and then waking back up shortly thereafter. I'm afraid that translates to no sleeping tonight (which will be no good for the Mommy, I'm super tired right now). Please keep Reagan in your prayers...for more good days/nights...let's break the cycle!

Wednesday, September 8, 2010

Darling girl...school overload

Reagan slept well again last night and woke in another darling mood today. Her nurse was so happy to see her happy (last time she saw her she was still miserable). It's a good thing she was in such a great mood because shortly after she woke up, she was bombarded by teachers! First off was her vision teacher, who was accompanied by another two vision teachers who came to "evaluate" Reagan's vision. They asked TONS of questions (most of which we didn't know the answer to) and had Reagan look at all sorts of things. According to them (on this particular day), Reagan was only attending to things in her right field of vision...right lower field in particular. When they showed her things on the left, she didn't seem to notice them (although I did see her look in that direction several times, so I think they were just a little overeager to "diagnose" her). They did give us some good advice on working with Reagan to strengthen her vision. They said that while she's obviously more of an auditory and tactile learner, when we're working on vision we need her to use only her vision. We have to use something that doesn't make any noise and show it to her against a black background. We're definitely going to work on incorporating that into her daily routine, because her vision is something that has probably been a little neglected in the past (especially when she was having multiple cataract surgeries and nonstop seizures). They also seemed a little concerned that Reagan wasn't wearing her glasses. Should be interesting to see what her eye doctor has to say about all of this at her eye appt next week. Immediately after they finished with their evaluation (but not before they left), the teacher and PT and OT all showed up. Talk about a full house (it was overwhelming for all of us). Her teacher this year is definitely more experienced, so I'm hoping maybe she'll actually learn something this year (or at the very least they'll try to teach her something). When everyone cleared out we could finally breathe a sigh of relief and take it easy for a little while. Reagan had a couple wet diapers on her own today (without the help of lasix), so hopefully things are finally starting to work again. She's been such a darling today. Talking in her little sweet voice and laughing up a storm for Daddy. Tonight I even managed to get away for a meeting at the Houston chapter of UMDF about forming teams for the United Mitochondrial Foundation Walkathon in February. This will be our first year to participate. I hope to get together as many people as possible to form Team Reagan and raise a lot of money for mitochondrial disease research. I'll definitely let you know more about this as the time nears.

Tuesday, September 7, 2010

Throw up and smiles

Reagan slept well again last night. This morning she was just waking up around 10am. I went to her room and saw her stretching (eyes still closed) and next thing I know she made the gaggy face and threw up! Ugh. Certainly not a good way to wake up! Despite that, my little angel looked up and smiled at me! Such a sweet girl! She had another soaking wet diaper (only one since the night before), so we changed it and then picked her up and moved her to the living room. She threw up a little more (so did the dog...talk about timing) and then that was it, she was fine the rest of the day. Not sure what that was about. We did hold off on the periactin this morning (since she still isn't peeing) but as soon as I saw throw up, I gave it to her. I wonder if that's why she got sick. You just never know with her. Always second guessing yourself. She had both OT and PT today. It's been a while since she's had either so it was good to get back into the groove of things. During PT she was yawning a lot. About an hour or so later she fell asleep. Not like her to take naps, but she does have a lot of sleeping to catch up on. Hopefully that's just it...catching up. It was only a little one anyway. This afternoon we finally saw a response to the lasix. I gave her lasix and 30min later she went. Six hours later I gave it to her again...and she went again. Three wet diapers for the day...that's a huge improvement to one (or none). Then tonight we had another throw up. Not happy about that. I was hoping we were done with that for a while. I sure hope that new GI doc has some ideas...too bad our appt isn't until the end of this month. Definitely need continued prayers for health. We need our sweet girl to stick around for a while. This rollercoaster of bad days/good days is getting so old. Don't get me wrong I am thankful that we do have good days sprinkled in, it just seems they are far and few between. More good days...that's what we need.

Monday, September 6, 2010

Good days

Reagan slept again last night! So nice. And then she woke this morning with a big, huge soaking wet diaper!!!! Yeah! Thank goodness. Her pediatrician even called to check on her this morning and was relieved to hear that she finally went. We were all very relieved (although that was the only wet diaper today so we're not out of the woods yet). And it's a nice bonus that she woke in another great mood. Smiling and happy. I love it! So nice to have our girl back! So much so we even ventured out this afternoon to our block party! Reagan was great. Smiling up a storm the whole time...even getting drizzled on didn't dampen her spirits. She was a doll. Hopefully we can string together lots more of these good days (and good nights). We definitely need them. Thank you for keeping Reagan in your prayers!


Sunday, September 5, 2010

Prayers for pee

Reagan slept last night!!!! I can't explain how happy that made us. I woke a few times early this morning and looked at the clock and thought...I can't believe she's still asleep!! She slept almost a full 12hrs. And what is even better...she woke feeling much improved! Thank you God! She's not the same child we've been dealing with over the last several days. It's like night and day. When she's sick, she just zones out, she's not present at all. You try to interact with her but it's useless...she's miserable. Today everything is different. She looks right at you, she reacts to stimuli, she smiles...she's a new girl. I don't know if it's the sleep that helps her to recover or if she's able to sleep because she's feeling better. Who knows. I'm just so happy to have my sweet girl back again. She's definitely still recovering; she's still pretty weak. The biggest issue we've had today is that she's not peeing anymore. After upping her dose of periactin over the weekend, she hasn't peed since early last night. We've given her 3 doses of Lasix today and so far, nothing. She just won't go. I spoke to the pediatrician and she said if she hasn't gone by tomorrow morning, we'll have to take her in and have her cathed. Problem is, most offices are closed tomorrow for Labor Day. I sure don't want to have to drag her into the emergency room for something like this (and expose her to God knows what). We definitely need some prayers for pee tonight as well as prayers for continued health and sleep!

Saturday, September 4, 2010

Sleepless in Houston

Reagan had another sleepless night last night. The clonidine only worked for an hour and then she was back up, restless and agitated. I was up with her at 2:15am when I heard a text on my phone. It was our Wed/Thurs/Fri nurse. She was awake with a headache and unable to go to sleep and she offered to come and watch Reagan so Mike and I could get some sleep (she lives right down the road from us)! Can you believe that?!?! She's a saint! We are SO lucky to have found someone so wonderful. I was hesitant to accept but eventually gave in. Thanks to her I was able to get several hours of uninterrupted sleep...very nice. Reagan, on the other hand, never fell back to sleep. Poor thing. Her little body must be beyond exhausted but she just can't sleep. She's just SO off. I tried the clonidine again this morning and she literally fell asleep for one minute and that was it. You can't put her down for a second because she slaps at her face with her left hand. She's still having a lot of chorea, but overall it's probably decreased a little. She's been less gaggy than yesterday...less retching but still making a lot of the gaggy faces. She threw up once this morning and again tonight, despite the huge increase in periactin I'm giving her. Today we've also seen quite a few weird startle, gasping responses from Reagan. Mike thinks they are chorea related, I HOPE they are chorea related. I'm beyond stressed. I just hate to see her this way. WHEN is she going to get better?? Believe me, if I thought taking her to the hospital would help, we'd already be there! But exposing her to more germs, sticking her already bruised veins with an iv, and pumping her full of meds that she doesn't respond to just doesn't sound like much of an improvement. (And by the way, we've never even seen a nurse in the middle of the night in the hospital, unless you're in the ICU they sure aren't going to watch your child through the night so you can sleep.) This has been going on long enough...she has to start getting better right? Mike was holding her around 7pm and she fell asleep in his arms but the second he tried to lay her down, that was it. She was up. We're going to give the clonidine a try again tonight...hopefully this time it will work! Also, if you could please keep my mom in your prayers...she's been having lots of issues with insomnia and today she passed out at work. Needless to say that landed her back in the ER. Hopefully they can figure out what's going on with her and she can get some sleep tonight too!

Friday, September 3, 2010

Worse

Things have been worse today, if you can believe that. Reagan was up the entire night last night crying. She never slept for longer than 45min at a time. Her pump kept alarming again and wouldn't run at all so I had to call them at 3am for a replacement. Her chorea is in full force right now...she's moving nonstop. Her head back and forth, her arms scratching and clawing, her legs kicking like crazy. She's grinding and gnashing her teeth. She's miserable. We took her in this morning to the pediatrician and she did find an external ear infection which may be part of the problem. She also swabbed her for strep which seems to have set off her gag reflex and she's been gagging nonstop ever since (and thrown up several times). Everything is just awful right now. Just absolutely horrible. And we're going on two days of no sleep...it's just really hard to take. She got even worse (if that's possible) after 5pm. The gagging was relentless and she threw up a bunch of light brown fluid (no clue what that was), so I called her pediatrician on her cell phone. She told me to give her a whole clonidine pill and more periactin right away. About 15min after we gave her the clonidine she was out like a light. We were thrilled! Unfortunately that was short lived, she woke up 20min later freaking out. Tons of movements, wide scared eyes, it was horrible. She did seem less gaggy though, that in itself is a huge improvement. I have no clue what tonight holds, but I'm not hopeful. We can't give her anymore clonidine til midnight, so I'm afraid there will be no sleep for us again. What we need now are prayers. Lots and lots of prayers. We can't fix this for Reagan but God can. Please say lots of prayers for our miserable little princess and hopefully this weekend will be better for us all.

Thursday, September 2, 2010

Bad night, bad day

Oh Reagan. What ever are we going to do with you. Reagan had horrible night last night. She fell asleep at 9pm and then woke 45min later crying. I gave her the clonidine and she was back asleep by 11pm. I crashed at that point. Only an hour later she woke crying to a beeping feeding pump. I was sleeping right beside the monitor and was so out of it, I didn't even hear it beeping! I actually jumped out of bed and grabbed the cordless phone and was looking at it like it was the monitor. Yes, I was beyond tired. So I got back up with her and we watched some tv. I put her in bed sometime after 1am but then she woke again crying at 2am. Her stupid pump kept alarming saying no food (which was obviously wrong because it was a new bag full of formula). It kept going off over and over again, all the while I'm trying to wrangle a screaming, squirming child. Finally I had had it and and I slammed the pump onto the floor, the bag then popped open and leaked all over her backpack and the floor! Talk about a meltdown. That was productive. So I had to then remake all of her formula, get a new bag, get a new backpack...of course, it never alarmed again. Stupid pump. I hate that thing. Reagan was up until 5am when she finally fell back to sleep. She then slept 2.5hrs, the longest stretch of sleep she got all night. Needless to say the lack of sleep did nothing to help her mood today. She's been fussing, crying, and moaning all day long. She's miserable but we're not sure what is wrong with her. Tylenol doesn't seem to do anything. She's got the clammy hands and feet again. She is peeing up a storm now (almost too much), she had 14 wet diapers today. She just doesn't seem comfortable in any position. Every now and then she'll settle down and it will look like she's about to fall asleep and then she jumps up and starts fussing again. The clonidine doesn't seem to be working either. Whenever she gets sick like this (if that is in fact what it is), sleep/pain meds don't work on her at all. Not a good combination. We really just need something to knock her out, but nothing works. I upped her dose of clonidine tonight and she's laying in her bed right now moving around, wide awake. Ugh. I don't know if I can handle two sleepless nights. I'm running on empty right now. My body feels like it's shutting down. Please say some extra prayers for our little one tonight...for her to get over whatever this is she's fighting and for all of us to get a good night's sleep!

Wednesday, September 1, 2010

Not so hot

No...it is hot. Believe me, it's really hot in Houston right now. But Reagan's not doing so hot. Everything started off well enough this morning...she slept through the night and woke up with a little gas but otherwise happy. All morning she was fine, then this afternoon a switch was flipped. We'll call it the poop switch. As soon as I heard her crying I knew she had a poop coming (it had been 6 days without one). The problem is, the crying didn't stop after the poop. Lots of crying. Yelling crying. Her whole face, eyes, mouth, nose are all swollen. She's gurgly and chokey...all because of the crying. Yesterday I started her on something new for the constipation. A juice called PlumSmart. I only gave her two ounces and she didn't seem to have any ill effects from it (and then she pooped today). But now I'm not sure if it's upsetting her tummy or if it's just the poop itself. Today I went ahead and continued giving it to her, but we'll have to see how she's doing tomorrow. When I was talking to her GI doctor on Monday she said that the lactulose we've had Reagan on can cause a lot of gas and intestinal cramping, so I thought maybe we should try something else. Only time will tell if this is going to work out or not. Today she's back to her regular pee schedule...actually more than her usual...without the help of Lasix. It always makes me nervous when we have to give her lasix, because what if it doesn't work?? I am not a fan of the alternative (taking her in to get cathed). Reagan calmed down for about an hour or so between 6:30-7:30pm and then the crying started right back up. She didn't stop til she fell asleep in my arms a little after 9pm. That's a little early for her to go to bed, so I guess we're just going to have to wait and see if she stays down. She also threw up. I really think it was just a result of the nonstop crying (and mouth full of spit). We just feel so helpless when she gets like this. We have no clue what's hurting her, but you can tell by the way she's crying, she's really hurting. Poor little one. We definitely need some prayers that this was just a one day thing and that she'll wake up tomorrow feeling much better (and sleep tonight).
**Update**She was up all night long crying! Keep those prayers coming!