Tuesday, May 31, 2011

Sleepy but good (more pics)

Sorry, I'm a little late with my post for Tuesday. I had a killer tennis match (which I won) but I now feel like I can barely move! Reagan has had a good day today. She didn't sleep too terribly well last night, I kept waking up and seeing her awake and moving around. I'm not sure how much she slept overall because she's been quite tired today. She had PT at 10am and fell asleep during it. Then she had OT at 11:15 and her therapist just stretched her while she was asleep for the first 30min or so. But when she finally woke up, she woke with a smile on her face. She's also been quite talkative today. Especially when you hold her face to face...I guess she realizes that that's the best time to "talk" to you! It's too cute! This afternoon we took her in to the hospital to get her gj-tube changed out. It was about time anyway (3+ months) but something broke inside of it and the connector tube wouldn't stay in the locked position and kept popping out! It went off without a hitch and we were in and out of there in no time! Reagan just laid on the table looking up at them and smiling! Such a doll. Tonight (while I was playing tennis) she napped off and on for Daddy. When I came home I held her and she talked to me and then fell asleep on my chest! She's such a cuddle bug. Hopefully she will sleep better tonight...we all could use the rest!

Enjoy...even more pictures from her photoshoot!

Monday, May 30, 2011

Sleep Day (and photoshoot pics)

Reagan fell asleep on her own last night (around 10:30am) and then not only slept through the night but most of the day. She'd wake up every now and then, move around (sometimes even opening her eyes), and then drift back off to sleep. Poor little sleep deprived girl! I'm sure this is just what her body needed. I'm also hoping this means we're in for a nice stretch of good days! I'm hoping to make a trip to the butterfly center and planetarium later this week (before all the schools let out for the summer). We've never taken her there and I think she'd probably enjoy it! Finally around 7pm Mike just couldn't stand it anymore and he went in while she was stretching and encouraged her to wake up. She was awake for a couple hours and then fell back to sleep. She did seem to be happy while awake although she's still a little spitty and congested (but thankfully no more throw ups). Hopefully she'll sleep through the night tonight and wake up and have a good day tomorrow!! Boy are we ready for some good days!!!

Below are the pictures taken in March by the photographer, Erin Golan, that did Reagan's littlest Heroes shoot last year. I love her and would highly recommend her to anyone in the Houston area that wants beautiful pictures of their family (you should see some of the baby pics she taken...I'd kill to have baby pics of Reagan like that)!

Sunday, May 29, 2011

Super spitty

Reagan started getting a little nauseous again last night. She wasn't throwing up, just choking and gagging on her spit a lot. She fell asleep late...sometime around midnight. But when we put her in her bed, she woke back up. We left her there (hoping she wouldn't choke on her spit) and eventually she did fall back to sleep. It didn't last long though. I woke up around 3am and she was back awake. I have no clue how long she actually slept. At 5am she woke me with choking, so I went in and picked her up and put her in our bed. We couldn't get her to fall back to sleep and she kept tossing and turning and choking, so finally at 7am we gave up trying and just got up for good. She's been having issues with her spit all day today. I don't know whether she's spitty because she's nauseous or if she's nauseous because she's so spitty (although I think it's the former). The old chicken or the egg question. We never really know with her. This morning she was still pretty clammy, but tonight the clamminess seems to be gone. All in all, she's been in good spirits today. We've gotten smiles, but no more laughs. Tonight she had one random outburst of tears...we're still not sure what provoked that. On a good note, she did fall asleep on her own tonight around 10:30pm. That's pretty early for her. I'm just hoping she stays asleep! I can't even remember when she last had a good night's sleep. She's due, that's for sure. Sleep and no more nausea!! Please keep her in your prayers!

A couple more pics from her photoshoot in March. I'll post family pics tomorrow!!

Saturday, May 28, 2011

Nauseous funny girl

Late last night, after a dose of clonidine, Reagan finally went to sleep. She slept through til 5:30am or so when she woke us up with her laughing!! She seemed to be fine so I left her there til 7:15am when I heard her choking. I ran in her room and she had thrown up again! That's when she and I got up. She continued to be very nauseous (throwing up many times) all morning. And she's still having a lot of chorea. Poor thing. She'd be fine, laughing and smiling, then all of a sudden it would hit her. She'd start throwing up and get all sweaty and clammy, she was moving around so much it was hard for me to hold her, much less catch throw up! Poor girl. Finally around noon it seemed to pass. What's weird is that usually we don't see improvement in her until the nausea passes...but the last couple times it seems that her demeanor improves before the nausea hits her. Her bad cycles definitely seem to be changing lately...and not necessarily for the better. Her nausea has gotten worse. I need to talk to her neurologist (before he moves away) to see how much we can go up on her nortriptyline. This afternoon we went outside and she spent some time swinging. I'm just so glad to see laughing and smiling again. I LOVE that laugh (even if it is a little crazy sometimes). Hopefully she'll be having 100% good days soon and sleep will return to us all once again! Oh sweet sleep!

Here's another teaser from her photoshoot!

Friday, May 27, 2011

Sleep deprivation

Last night was another booger of a night. Mike took Reagan at 9:30pm so that I could sleep for a couple hours...it's a good thing, because Reagan woke up at 1:30am and was up the rest of the night! I slept from about 10:30-12:45, then I got up and made Reagan's formula. I went back to sleep around 1am and then got up with her 1:30am...and we've been up ever since. She'd doze off for a few minutes at a time, but she just couldn't stay asleep. She was either fussing, whining, or crying most of the time...which made for a very long night. This morning she seemed to be feeling a little better. She even did the occasional laugh. She made it through both vision and speech therapy without any meltdowns. Overall she was pretty good today, not last night, but today. It definitely seems like she might be on her way out of the bad days. Her hands and feet are still very clammy though. Tonight she had several pretty big throw ups. I hate it that she's nauseous but that's usually the best indicator that she's almost done with the bad days. Of course, that still doesn't mean she's going to sleep tonight! Right now it's 11:45pm and she's still awake (and that's without a single nap all day and being up since 1:30am this morning)! We're all suffering from sleep deprivation over here. And our poor girl, she SO needs some sleep! Please keep her in your prayers!

Here's a little sneak peak of her photoshoot from a couple months ago...more to come!

Thursday, May 26, 2011

Miserable night

Last night was one of those nights. It was a miserable one, that's for sure. I only got about an hour of sleep before Reagan woke crying. I got up with her and she fell back asleep within the hour. I put her back in bed but she was back up in only 30min. And this time she woke with a vengeance! She was not a happy camper. She was fussing, moaning, crying, holding her breath...it was exhausting. But she wasn't exhausted, she was wide awake. She actually didn't doze again the rest of the night. It was nonstop moaning and crying in my ear. I was definitely at my breaking point. And then...she bit me!!! OMG it hurt like heck! There were a few obscenities screamed out! She got me on the inside of my right arm (I had her leaning over my arm) and broke the skin and left a nasty looking bite mark/bruise. Needless to say, Reagan wasn't the only one crying this morning. It's quite stressful to stay up all night long, especially when she's so upset like that. When Mike got up to go to work, it seemed like she might be making a turn around. He even got a laugh out of her! Most of the morning she seemed a little better, but then around 11am or so the crankiness set back in. She cried most of the afternoon. We had to cancel all therapies and finally around 3pm we gave her some clonidine and she finally took a nap. Tonight she's been more whiny with less crying. It's 9pm right now and she just dozed off in Mike's arms. I hope that means she's going to sleep tonight...but just in case, I'm going to bed now to try to prevent another mental breakdown if I'm up all night again!!! Please continue to keep her in your prayers!

Wednesday, May 25, 2011

Breath holding

Last night at about 9:30pm the nursing agency calls me. It's never good when they call you late at night or early in the morning. They called to say that our Wed nurse (who only works for us on Wed) wasn't going to make it in. GREAT. Immediately I texted our other nurse (who works Mon-Tues-Thurs-Fri) and asked her if she'd be willing to work! I knew there was a good chance that Reagan would be up all night and I was worried that I would go insane if I didn't have some help! She agreed to work (although it's ridiculous that the agency still has not sent anyone out to serve as a back up for us). Reagan slept much better than expected last night. She fell asleep in Mike's arms at 9pm and then he laid her down in bed around 10:30pm and she pretty much slept through the night. Around 4am she started waking and moving around. She'd wake up, flail and fuss a little, I'd run in there and shush her for a few seconds and then she'd be out again. This happened every 20min from 4-6:45am. Then I decided to get up with her, thinking she was up for good, but she fell back asleep on me and did the same thing, waking every 20min. Today she has been quite the stinker. Still groggy, but not sleeping nearly as much as yesterday. She's more restless today. She'll fall asleep and then wake 10min later (or the second you try to move her). She's still super clammy. Her hands and feet are cool and wet with sweat. And she's been having these ridiculous crying episodes where she was takes holding her breath to a new level. She's not even responding to us blowing in her face and she's holding her breath til she turns purple all over. The last time she did it her hands stayed purple for a few minutes afterward. It even scared me a little and I'm used to her doing this! All I can say is that she must be in some sort of pain to cry like that. I don't think it's just her being a brat (but who knows). At least she wasn't crying every waking moment today...just maybe 1/2-3/4 of the time. Hopefully she'll fell a little better tomorrow. Baby steps. Please continue to keep her in your prayers!

Tuesday, May 24, 2011

Crying and sleeping

Last night as Reagan was falling asleep, it was clear that things were beginning to take a turn for the worse. She was very tense and restless. She was more aggressively going for her hand. And she already had that smell (an ammonia sort of smell she gets on bad days). She did fall asleep though and we put her to bed around 10:30pm or so. She slept through til 3:30am when she woke with a fury! She cried nonstop for at least an hour until she fell back asleep again. I waited a little while (to make sure she was good and asleep) and then I laid her back down in her bed at 5am. She slept til 8:45am, when she woke crying again. She's been in and out of sleep pretty much all day. When she's awake, she's crying...and holding her breath til she turns purple/white. All I can say is thank goodness she's been sleepy today. Not sure what's going to happen tonight though. On a good note, her hair still looks fabulous! Even though she's miserable, even without brushing it, it still looks cute! Please keep her in your prayers!

*on a side note-the more I think about it, the more I think that smell might be from the L-carnitine she takes. I've heard that L-carnitine can cause a fishy sort of smell. What's weird is that we only notice it on her bad days...but maybe that's because she sweats more on those days? Just a thought.

Monday, May 23, 2011

Real haircut

Last night was another long night. Overall Reagan wasn't too bad...she just had one serious tantrum-like crying fit that woke the entire house! I was up with her for a few hours from 1-3 and then again from 4-6 and she was back awake by 7. She has been tense and clearly not happy, but we were expecting a lot worse from her today. We kept an eye on her all morning and she seemed to be doing OK, so I made an appt for her to get her hair cut. Boy has this been a long time a coming! Last night when we were brushing her hair after her bath, we had her laying with her head on the end of the bed and her hair seriously almost touched the floor, it was so long! Too long. We can't do anything with it anymore...it always has to be braided or it looks a total mess! So today we took her in and got it chopped! She now has a bob and it looks so beyond cute...I just love it. And I'm sure it's going to be so much easier for her. No more tight ponytails, we just pull the top back in a bow or barrette and we're done! Instant cuteness! And the 10+ inches they cut off, we donated to Locks of Love. Like mother, like daughter...we both let our hair get ridiculously long before cutting it! At least we were able to help a great cause by doing so.

Sunday, May 22, 2011

Happy to see Grandma

Reagan didn't sleep much again last night. She slept an hour or so and then was wide awake and talking. I couldn't fall back to sleep, so I got up with her. We were up from 1:15-4:30am when she finally dozed back off. She wasn't asleep but another hour or so before she woke up and started talking again. She's been awake ever since. Big, wide alert eyes...no sign of sleepiness whatsoever! And definitely happy to see her Grandma! She's been smiling, laughing, and talking all day today!! She played with Grandma, spent time outside in her swing, and we even Please keep her in your prayers. took her for a walk this afternoon. I'm so glad she had another good day! Unfortunately we've seen a few signs that things might be changing. She's really been chewing at that hand and at times her laugh sounds more crazy than happy. Then tonight she had an outburst where she started screaming crying completely out of no where. Ever since then she's been really tense and unable to relax. I really hope she sleeps tonight because I for one and exhausted and could use some sleep. Please keep her in your prayers.

Saturday, May 21, 2011


Last night was our movie night. We went and saw Thor in 3D at Studio Movie Grill (they serve you food/drinks during the movie). We enjoyed ourselves. Reagan was an angel the entire time we were gone and fell asleep just before we got back. I was so relieved!!! She slept fairly well. We heard her up and talking at one point but she went back to sleep and we all slept in til around 8:45am. She's been in a good mood (for the most part) today. This morning was pretty much smooth sailing...except the constant battle with that left hand in her hair (even with a sock on it, she's become an expert at getting the sock off). This afternoon her speech therapist came and worked with her for a little bit (she was making up sessions b/c she missed 2 days last week). She was a little squirmy but she did well. Then afterward I was holding her and she was really on edge. She was constantly on the verge of tears. I had to keep changing things up, making noises, changing positions, etc just to keep her from crying. Then Mike took her so I could give the dog a bath and she's been perfect ever since! She's been smiling and laughing for him...maybe she just wanted her Daddy?!?! What's crazy about that is that lately she's really been giving him a hard time. He'll come home from work and talk to her and she'll put that lip out and tear up immediately!! She's also been sensitive to us talking amongst ourselves. When I talk to Mike (or the nurse or even therapist), she'll start to get serious and all teary eyed. I'm not sure what it is. Maybe she just wants all the attention, maybe she's a little spoiled (could it be?)...I'd like to think that's it! I'm hoping she continues her good streak at least until tomorrow. Grandma has been working mandatory overtime (10hrs/day, 6 days/wk) and hasn't been to visit in quite a few weeks. Actually, it's probably longest amount of time since Reagan was born that she's gone without seeing her. So grandma is coming in early tomorrow morning and then leaving early Monday morning to get back in time for work! She's got to get her Reagan fix! I'm sure Reagan is going to be thrilled to see her. Hopefully it's a "good" day!
(Don't forget to pause the blog music so you can hear the video!)

Friday, May 20, 2011

Still sleepy but talkative

Reagan slept through last night...straight through to 4:45am!!! A little early for my taste, but she was ready to get up and at em! I got up with her, she had a couple wet diapers, and then dozed back off! I was afraid to move too far with her, so I just laid her down on the floor in the living room and I stayed close to her (and didn't get any sleep). She woke up smiling and was sweet and vocal all morning. She only had one therapy today. She had speech this morning...more talkative than her therapist has ever seen her. It was super cute! She dozed off around 11:30am and then slept til 3:30pm!!! Another long afternoon nap! Then tonight she dozed off for a little while too. Lots of yawns today. Oh well, poor girl, she needs it. She's awake now (and "talking") and we're waiting for our friend to get here so we can go out to a movie. I'm hoping Reagan continues to be precious and everyone has a good night!

Thursday, May 19, 2011

Sleepy but smiley

Reagan was wide awake again last night at 11:15pm. We gave her some clonidine and she was out like a light (snoring even)...and slept through the night. She's been a sweetie again today. Very smiley. Very talkative. She had Speech this morning and was looking a little drowsy. Afterward we put her on the floor in front of a movie and she passed out. She slept from noon-6:15!!! She slept through school and PT! I guess today was her catch up on sleep day! She sure needed one of those! She didn't wake up until we picked her up to put her in the car to go to Bible study! She woke happy and was great the rest of the night. She did have a couple more random teary eyed episodes...still not sure what that's about. I'm hoping she holds out til tomorrow night. Mike and I have a date night planned. A friend from our Bible study is going to watch Reagan while we go to a movie (our first night out since she last watched Reagan for Valentines day). We don't get out much. Hopefully she behaves herself and we're able to get out and have a nice night. She certainly deserves some more good days. Please keep that in your prayers!!

Wednesday, May 18, 2011


Reagan finally slept last night...with the help of clonidine. At 11:30pm, she was still going strong so I gave her a dose of clonidine. Apparently that was just what she needed because she dozed off and slept through til morning (as far as we know anyway). We woke to her "talking" around 7am. She's been all smiles ever since...except for one random episode where she burst into tears all of a sudden when the nurse and I were talking (she raised her voice for emphasis and I think Reagan interpreted that as yelling). Such a sensitive girl. Other than that (and one other almost outburst tonight), she's had a great day today. She had vision/OT this morning and then her teacher at noon. She did well for both. Please keep it in your prayers that she continues to have good days...we need more time to recover from that last batch of bad days!! Then this afternoon Reagan was watching the Little Mermaid (her new favorite video) and she was "singing". Every time Ariel would sing, Reagan would chime in! Oh my goodness...it was SO cute!! At first I thought it was just a coincidence, but she did it many times throughout the movie, specifically during the singing and many times in the same tone as Ariel. After the movie, I replayed a scene with the music trying to catch her doing it on video. What I caught wasn't quite the same singing I heard during the movie...
(Don't forget to pause the blog music at the bottom of the screen!)

Tuesday, May 17, 2011

Still in need of sleep!

Today has been another fairly good day for Reagan. She didn't sleep very well last night, she woke us at 3:30am "talking" to herself and has been awake ever since. She was in a good mood though so we were able to just cover her up (she had kicked off all her covers) and leave her in her bed awake. She never fell back asleep though. Poor girl. No naps...nothing. I'm not sure when she's going to fully recover from her bad cycle if she never sleeps it off!!! She hasn't had any more throw ups today, so that's good. She's still got a lot of chorea, having occasional hyperactive fits, and not sleeping...that's why I'm hesitant to say that she's having full blown good days just yet. She's also got that hand in her mouth or hair at all times! Her mood is good though and that's enough to make me happy. She's been a little less smiley/laughy today compared to yesterday, but she's still been very good. We went today and picked up her hand protector that they custom made for her. There's a little less room in it that I would have liked but it's made of a thick neoprene (with air holes) and has an extra protective material over the finger areas that will make it hard for her to injure herself. It also has velcro straps that tighten around her wrist, so I think it will be nearly impossible for her to get off. The only thing I would change is the fluorescent pink color! It's a little hard to look at! We're not sure how breathable it will be...especially when she's clammy on her bad days...so we're going to test it out over the next week or so to see how it works for her. Please keep it in your prayers that she can get some rest!

Serious Face

Monday, May 16, 2011

Rough night, better day

This has been a very strange day. Reagan only slept from 11:30-12:30...and then she was up CRYING the rest of the night! It was crazy. She was much worse last night than she was all day yesterday! It was a miserable night and I was questioning whether or not I was going to survive it! It was a rough one, that's for sure. I was so desperate that when 5am rolled around, I immediately texted Reagan's nurse to see if she'd come early. She never texted me back, so at 5:15am I called her! Mike finally got up at 5:30am and relieved me. I woke at 6:40am to find Mike asleep on the couch and Reagan in her brown chair wide awake, but not crying. Reagan's nurse showed up a few minutes later so I got all her medicines ready and I went back to sleep for a couple hours. When I woke back up at 9:30...Reagan was a new girl. She wasn't crying and she had even given her nurse a few laughs! She actually got better and better as the day went on! She was in great spirits. Smiling and laughing...so good to see that. At the same time she's thrown up quite a few times today. Pretty big throw ups too. Overall, she hasn't been super nauseous, it just seems to come out of nowhere. One second she's fine, the next second she's coughing and throwing up! She also has been sneezing a lot...which is very out of the ordinary for her. I don't know if it was related to the throwing up (a few times it came out her nose) or if it was linked to the nasal congestion she had all week last week. Who knows. I'm just so glad to finally see my sweet girl again! I don't know if I'd quite consider today a "good" day (with all the nausea and the rough night last night) but we're certainly headed in the right direction! Thank you for your prayers!

Sunday, May 15, 2011

Too many really bad days

It's been another rough one for Miss Reagan. I guess you can say she's been slightly better than yesterday, with a little less crying overall, but she has continued to have her moments of holding her breath til she turns purple! She spent part of the night last night in her brown chair, part of it in Daddy's lap, a few min in her bed, and then up early this morning with Mommy. Poor thing...I know she's exhausted but her body just won't allow her to sleep! She'll doze off only to be jolted awake with a rush of energy/chorea. She's still trying to bite (me and herself) and she's still very clammy. Still very zoned out...no smiles in sight. These bad days just don't seem to be budging! It's very discouraging. I hate to see her have this many really bad days in a row. I'm hoping tomorrow we'll finally see some significant improvement. Please continue to keep her in your prayers...

Saturday, May 14, 2011

Horrible day

Today has been a HORRIBLE day. Horrible. Reagan slept from 12-3:30am last night sitting in her brown chair (which we pushed up next to our bed). Ever since then she's been crying nonstop! She'd doze off for a few min here and there, but overall she was substantially more awake today and more irate! It's been a stressful day to say the least. Mike left at 6:45am this morning for a golf tournament. Needless to say, I was a little ticked off with him for leaving me here alone. Reagan was probably worse today than I've ever seen her. She was just so hysterical...kicking and screaming, hitting me in the face, scratching herself, trying to bite herself, trying to bite me, just completely and totally miserable. I basically had to hold her on my lap, holding both of her arms down at all times (even though her left arm was in a restraint, she was still bending it up dangerously close to her mouth). This is not an easy task, holding/restraining her on days like these, she has superhuman strength. There was lots of crying...by both of us. It's just so frustrating! Why should she have to go through this? And even if we found something to sedate her when she gets like this (which we haven't had much success with...remember what happened with the methadone), that's still just putting a band aid on it. No one is actively trying to figure out what's going on here. None of her doctors seem interested in the why. Why does she go through these good/bad cycles? Has anyone ever seen this sort of thing before? We HAVE to find a doctor to help her...we just have to! Please, if anyone has any suggestions, we're all ears. We're willing to go anywhere, do anything to help her. This is just too much. I don't think we can live with it like this much longer. It's too hard on her and it's too hard on us. Please keep her in your prayers...she's already had two horrible days...it HAS to start getting better soon, right?!?!

Friday, May 13, 2011


Today marks the start of yet another bad cycle (the throw up last night was a good indication). We had 5 horrible bad days last week and then only 5 good days this week...I don't like those percentages. Today has been a heck of a day too. On a good note...Reagan did sleep last night (thank God). She woke up at 6:30am crying. I went into her room and patted her and she went back to sleep. A few minutes later she'd wake again...crying. I'd go back in and she'd fall back asleep again. This went on and on until 7am when I finally just got up with her. Of course, she did the same thing in my arms. She continued to do that all day (although during the day when she'd wake up, she was a little more feisty and she'd stay wake longer, screaming and holding her breath til she turned blue). And she did NOT want to be put down! Just to change her diaper, was a huge struggle. She was super sweaty and clammy and trying to bite her hand (she wore her arm restraint all day). She literally did not have a single waking moment today when she wasn't crying. When she was awake...she was crying. Not just crying either. Screaming crying. As always, we have no clue what it is that is bothering her...but she definitely seems to be in pain. Please keep our miserable girl in your prayers!

Last good day

Sorry for the delay...don't freak out, everything is OK (except Reagan is miserable but that's not totally out of the ordinary). I apologize for being late with my post…something was big time wrong with Blogger. So without further ado, here's Thursday's post...

Today has definitely ended on a sour note. Reagan was up again last night…but she was happy so we were able to get some rest. I’m not sure how long she was up, but she was wide awake and kicking when we woke up this morning. She seemed happy enough, although she was still having some snot/congestion issues. When the nurse got here, she and I were talking back and forth and Reagan went from laughing to crying. That was red flag number one. She calmed down and was fine for the rest of the day (although she did seem a little clammy at times). She had lots of therapies today and was great for all of them…again. Then this afternoon she gave us some more of the crazy laughs, but she was fine. We went to Bible study and she was quiet and a little more serious. On the ride home, she dozed off in her carseat. She was very restless as she fell asleep and then woke up in a startle, very tense and arching her back. She calmed down and seemed fine. When we got home, I laid her down and started getting her medicines ready. Then all of a sudden she started crying and coughing…I ran to her and she had thrown up some yellow bile. She kept crying (like she was in pain), so I hooked her g-tube up to the vent and a good amount of yellow bile drained out. I don’t even remember the last time I saw yellow bile. Not a good sign. She remained tense with occasional outbursts until she fell asleep in Mike’s arms. I’m not too hopeful on sleep…I have a feeling I’ll be spending most of the night in the recliner. She’s definitely headed back into some more bad days. I just pray this go round is a little less horrible and a little shorter than the last. Please keep her in your prayers!

In the car on the way to Bible study...still happy.

Wednesday, May 11, 2011

Happy girl

Reagan was up again last night. When I woke up at 2:30am I looked at the monitor and she was still asleep. I went to the bathroom, laid back in bed, and looked at the monitor once more...she was awake! I swear she can sense it when I wake up! I fell back to sleep but I don't think she did. When we woke up at 6:15am, she was still awake and kicking. She was in a great mood though. All smiles and even a couple giggles! She's been super sweet all day today (even though she sounds a little congested). Today was a busy therapy day with vision, "school", and speech all pretty much back to back to back. She did great (and wore her glasses). We thought she was getting tired but she never did fall asleep. She's been going strong all day long! Tonight she was rolling around on the floor just as happy as can be! I just hate it that she can't be this happy all the time! She's obviously a happy girl at heart but half of her days are spent being tortured by something and none of her doctors have any ideas on how to help her! Very frustrating. For now we just enjoy her good days and try to cope during the bad days. Prayers that these good days continue!

Tuesday, May 10, 2011

Good day

Today was another good day for Miss Reagan. I think she slept a little better than the night before (I did anyway). We woke at 6:30 to her "talking" in her bed. So cute. We put her in bed with us and she snuggled with Daddy and fell back to sleep. She's been very sweet and smiley again today. Very easy going and laid back (aka floppy). The head control has definitely been lacking. What's worse is that she's actively pulling forward...not the best position for the stander (or the carseat). She had both PT and OT today, although I'm not sure how well she did for both. She was happy though, so what more could we want. Tonight Reagan and Daddy came to my tennis match. Now that we know Reagan's OK in public on her good days (since she was such an angel on our trip), we thought we'd give it a try. The only mishap was when we first got there and took her out of the car...she gave Mike the pouty lip and started crying. He pushed her around for a few min and she calmed down. She actually fell asleep a few min later, so maybe she was just tired. She woke up after a little while and was well behaved the entire time. All is right with the world tonight...Reagan had a good day, we got our plumbing unclogged and can use the bathroom again (for a substantial fee), and I won my tennis match. Good day.

Monday, May 9, 2011

New glasses

I don't know if Reagan just sleep too much yesterday or what, but last night she was up most of the night. We put her to bed early but she was back awake before we went to bed. She fell back to sleep on her own but at 3:30am I woke up and found her wide awake again (no covers and wet diaper). I covered her back up, changed her diaper and went back to bed...but I don't think she ever did. She was still wide awake when Mike got up this morning for work! At least she was happy and let us sleep! She's been super sweet and smiley again today. Super cuddly (aka floppy). She did fall asleep mid morning and took a decent nap. When she woke up, we bathed her, got her dressed and headed into town to pick up her new glasses. She looks oh so studious in them! They fit her really well...probably the best fit out of all three pairs she's had. Hopefully these work better for her than those did. I just want her to be able to see better out of them (not worse). We'll see. We're going to keep a close eye on her to see how she's doing with them. Tonight we had an unpleasant incident (that had nothing to do with Reagan). Our master bath was flooded (and now our room smells like sewage). Apparently there's some sort of clog, somewhere, so we can't use anything with pipes right now! Ugh. Talk about unneeded drama! I'll be heading over to our neighbor's house to take a shower tomorrow morning! At least we have nice neighbors! Prayers for a inexpensive, easy fix to this mess!!!

There are signatures all over the walls of the glasses store...Grandma wrote this when Reagan got her last pair of glasses!!! Still there!

Sunday, May 8, 2011

A Happy Mother's Day

Today was a happy mother's day indeed! Reagan gave me the best gift I could have gotten...a happy girl! And a good night's sleep!!! What more could I want (except for my mom to be here...she had to work this weekend)?!?! Reagan slept the whole night through (til 10:30 or so) and then woke with SMILES!!! Big giant smiling eyes. Oh...how I've missed my sweet girl! She's been super precious all day. Still very tired. Super snuggly. She slept in late, took a long nap this afternoon, and then fell asleep early. She's got lots of sleep to catch up on...this last "bad" streak has been particularly rough. But everything is good now and we are going to relish these good days! Tomorrow we're going to go and pick up her new glasses...so I'll be sure to post some pics of her in them! I hope everyone else had a good Mother's Day!!! Thank you all for your prayers!!

Saturday, May 7, 2011

Super nauseous

Reagan didn't sleep a wink last night. She was wound up...kicking and flailing like crazy. She bit her hand...again! Mike stayed up with her since I was severely sleep deprived. She never really fell asleep. Finally around 5am, he gave up and just laid her in her bed. I woke up late at 9am to find her kicking around in bed laying in her throw-up! Poor thing. She's been beyond nauseous all day today. Most of the morning she was nauseous and constantly making gaggy faces, she was miserable but she wasn't really throwing up. This afternoon she started actually throwing up and it's been horrible! She kept trying to swallow it back down and then she was choking and not breathing! It was making me a nervous wreck! She hasn't been this nauseous since starting nortriptyline. I hate this. This is the worst bad streak Reagan has had in a really long time. So frustrating. I certainly didn't think it would go on this long. And now it feels like it's never going to end. Her nausea decreased slightly late tonight (of course it's after midnight and she's still awake). We did hear a few random laughs out of her...so maybe that's a sign of good things to come. I sure hope she turns it around for mother's day tomorrow. I miss my sweet girl. Please keep her in your prayers!

Friday, May 6, 2011


Reagan was up again all night last night. She fell asleep and slept for maybe 30min and was back up before midnight. I gave her some clonidine and she eventually fell back to sleep and slept for another 30min when her pump started beeping! I got up and messed with it and started it back up again and not 5min later it was beeping again and woke her up! We were up from then on (most of the night). So at 2:30am I picked up the phone and called and left the medical supply company a nasty message! This is SO ridiculous! Like we don't have enough problems keeping her asleep as it is...the last thing we need is some malfunctioning pump waking her up!!! So today they came and gave us a new pump to try. She wasn't hooked up 1min and it started beeping again!!! Ay yay yay!!! We just can't win. Eventually we did get it running and it seemed to work better than the other one (that was beeping nonstop all day today). I think it has something to do with her formula. It's a powder that you have to mix up and I think it just never mixes very well (or settles out of solution) and then confuses the pump. That's my theory anyway. Hopefully this one will do better (so I don't have to throw it out the window). Reagan has been less fussy today. Overall she's been pretty quiet...she just fusses when you try to put her down. She's still very tense, serious, and zoned out. Not even a hint of a nap today. Lots of chorea and her hands/feet are still ice cold and clammy. I'm hoping tomorrow we'll see more drastic improvement...a smile or a laugh, maybe? And sleep. Oh sweet sleep. Please oh please Reagan...you HAVE to sleep!! Continued prayers are appreciated!

Oh yeah...and we found out today Reagan's neurologist (who we actually like a lot) is moving to NY!!! Ugh.

Thursday, May 5, 2011

Another bad one

Today has been another stinker of a day for Reagan. She slept a little better last night. We got her to bed around 11-11:30pm and then she slept through til 3:30am. What's miraculous about that is the fact that her stupid pump went off 5 times during that period and somehow she managed to stay asleep! Each time I would get up, disconnect her, take the pump into the other room and pour the formula out into a new bag, and then go back in and reconnect her. Usually that works like a charm and it goes for the rest of the night, no problem. Not last night. And once I got up with her, it went off several more times, saying "No Food"...even though it had a full bag of formula! So annoying! The sound of that beeping pump makes me want to pull my hair out!! Reagan fell back to sleep with the help of clonidine, but that only lasted another hour or so and then she was up for good. Today Reagan has been more moany/groany than full out crying. She's still miserable. Lots of chorea...she can't sit still for a minute! Still very sweaty and clammy. She gets this weird smell to her too...I can't really describe it, but I'm noticing it a lot during her "bad" days. Still biting, but not quite as bad as yesterday. Tonight she's moaning a little less...I'm hoping that means tomorrow will be a better day. I'm also hoping for some sleep tonight. Speaking of, I'm going to try to get some sleep now, just in case I'm in for another all nighter tonight! Please continue to keep her in your prayers!!

Wednesday, May 4, 2011

Bad days are back

Reagan was up most of the night crying. Poor thing...I don't know how she's staying awake! I know she's BEYOND sleepy. She keeps falling asleep for short stretches of time and then waking up moaning & screaming again. Not fun. The bad days are back. I'm glad she waited til we got back home to do this...but it just sucks that she has to go through this...period. We gave her some Lortab this afternoon. I think it helped her to sleep a little more throughout the day, but it didn't keep her asleep (and it made her very twitchy when asleep). She's also biting like crazy today. She bit Mike this morning and then this afternoon she bit her right hand (because her left hand was in the restraint and she couldn't get to it). So now she's got both restraints on. She's moving and kicking around a lot...making it very difficult to hold her (and also making her very sweaty). The only thing getting us through today is the hope that tomorrow will be a better day...for all of us. Please keep our little miserable one in your prayers!

Tuesday, May 3, 2011

Vacation over

We couldn't have asked for Reagan to be any better on this trip. We knew we were pushing it. We needed 7 good days in a row (which has only happened once...ever). What we got were about 6 1/2 good days. Yesterday was the first day we saw even a hint of a cry out of her. It was a loooong day. We went to breakfast with Mike and his boss and then they went to meetings and we sat in the hotel room. It was also the first rainy day we've had since we started our trip (which is amazing since we were in Seattle and Victoria which are both notorious for rain). We checked out of our hotel by 3pm and then checked in early for our Victoria Clipper ride back to Seattle (there was potential inclement weather so they wanted to leave an hour early to try to miss it). We got a great seat in the front row and we were the first on and the first off. The boat didn't actually leave til around 5:30 and we got to Seattle around 8:30pm. We took a cab to the airport and then grabbed some food. It was clear Reagan's mood was declining. She woke way too early the that morning (around 4:30am) and then didn't sleep all day. She had those red puffy eyes...she was exhausted. We put her in her carseat during take off and she didn't even last til we got to cruising altitude...she started crying and I had to take her out. I gave her some clonidine but all it seemed to do is make her more tired and unable to sleep. She'd keep dozing off and then waking crying (of course it didn't help that we had another kid behind us crying off and on). It seemed we were also on a plane full of coughing and sneezing people (and there was NO way Reagan was going to tolerate wearing that mask). None of us really slept much on that flight and we're all super exhausted today. Despite being exhausted, Reagan really hasn't sleep much and her temper has gotten worse. She now has clammy hands, is super sweaty, and a constant scowl on her face. She's also had several big throw-ups. The crying has really gone up a notch this afternoon. I'm afraid we're headed toward some bad days. She's been holding out for us though...so I'm not sure how much more we could ask for. Please keep her in your prayers over the next few days. She so needs some sleep!!!

These are the pics we took from Butchart Gardens (before our camera died). You can't really grasp the beauty from these pictures. It was so sunny, the colors are a little washed out...but it was spectacular! Acres and acres of flowers. Lots of tulips in every shape and color! So pretty!!

Then our camera died!!

Camera dead