Saturday, July 31, 2010

One of those days

It's been another one of those days. It all started off last night with Reagan waking up an hour or so after going to sleep. Not good. Then I sat up with her for a couple hours...no sign of sleepiness. I finally forced her to lay down in her bed and I layed beside her shushing her until she finally stopped fussing and fell back to sleep (both of us fell asleep). Finally at 6am I woke up and went to my bed and Reagan slept in late. I had to finally wake her up at 10:45 because we had PT coming today. She did OK for just waking up and then we even did an hour in the stander. So far so good. Then this afternoon around 3pm I went to take a nap (while Mike watched her) and 30min later I woke to her crying...and she's been crying off and on ever since. She's definitely having tummy pains, she's had quite a bit of gas, but she's also just acting all around crazy. One second she'll laugh and the next second she's crying. It's been a long night. She's been super spitty today (like a faucet) and then with all the crying it's made everything worse. She's choked on her spit several times and even thrown up. She's a mess. And there's no sign of sleepiness. What are we going to do?!?! Grandma's coming in tomorrow so hopefully she recovers (poor Grandma hasn't seen her happy in a while). Please keep our miserable little one in your prayers...

Friday, July 30, 2010

Swimming

Just like I thought, Reagan only lasted 2hrs until she woke back up last night. Thankfully she was only up an hour and then fell back asleep and slept the rest of the night. I have Reagan's monitor beside my bed so when she wakes up, I usually wake up. Well her nurse must have gotten to her this morning before she made a peep because I didn't wake til 9am (one hour after Reagan woke up). Reagan has been in a pretty good mood today. Still a little crazy at times (she's up one second and then moved to tears the next) but overall she seemed a little better than yesterday. No therapy today, just an hour of "school". This afternoon we finally got around to letting her swim again (in her waterway babies pool). She was really loving it. Kicking those legs around...she would have been halfway across a real pool. I love the way this bathing suit looked in the water...it moved around like a jelly fish. Reagan probably would have stayed in there much longer but we took her out after about 25min so she wouldn't get too pruney. Hope you like the pictures...






Thursday, July 29, 2010

Something brewing

Reagan was difficult to get to sleep last night...but when she fell asleep (on her own without meds)...she stayed asleep (thank God)! She woke up this morning in a decent mood. No crying, just lots of movements and very feisty. Lots of chorea...kicking her legs and clawing at her arms. She bit the inside of her cheek while on her tummy (it was bleeding) and then she bit her thumb a couple times too. It's like once she finds it, you just can't keep it out of her mouth! During feeding therapy she wasn't too interested in the applesauce but it was worth the try. Then this afternoon we noticed she felt a little hot and she was running a 100 degree fever. I definitely think she's got something brewing. We always see an increase in fussiness and chorea when she gets sick. I just hope she can clear it and get over whatever it is quickly. Tonight she threw up and then started crying right around bedtime...I caved and gave her the clonidine. Within 15min she was out. Hopefully she'll stay out because the last time we used it she only slept 2hrs. Continued prayers for our little feisty one are definitely appreciated!

Wednesday, July 28, 2010

Miserable

In the last 24hrs Reagan has been quite the challenge. Last night she slept from 9:30-11:30pm (thanks to clonidine) but then woke screaming crying once again. I got up with her but there was just no soothing her. Finally around 1am she settled down as we watched antiques roadshow. By 2am she was asleep. She woke 4hrs later and has been up ever since...thank goodness our nurse was here today. Reagan didn't cry most of the day but was very tense (so much so her little legs would shake) and having lots of chorea. She was sleepy all day (but wouldn't sleep). Both her vision therapist and her teacher came today but she was not that interested. Then this afternoon she had one little outburst of crying for our nurse and then after she left the crying picked back up. Loud bursts of yelling crying...she was definitely in pain. She's had a little gas, but I can't imagine it's enough to make her this upset. I honestly don't know what's wrong with her. Is she getting sick? What could possibly make her this miserable? When she's miserable, we're miserable. Please keep her in your prayers...we all need them right now.

Tuesday, July 27, 2010

From sweet to sour

Reagan has been a bit of a turkey today (no surprise...since we were without a nurse). Mike heard her making noises in her bed around 5am. He picked her up and put her in bed with us, but she was NOT going back to sleep. She was good though, she just laid there beside us moving around, of course then none of us slept. Finally around 7:30am I got up with her. She was pretty good all morning. Smiley, laughing, but lots of chorea. We gave her a bath and then she had occupational therapy. She did some work on the ball and was impressing her OT with her head control when on her tummy (problem is when you're holding her, she wants to bend forward and has less than impressive head control). Then as the afternoon went on she started getting a little whiny. Then whining turned into red-faced screaming. I know she's got to be tired and needs to catch up on sleep, but the increase in chorea makes me think it might be something more than that. She'd be fine one second and next thing you know she's screaming bloody murder. What are we going to do with this girl. Finally I had to break out the clonidine in hopes that she'd sleep it off. She's out right now, but let me tell you, she was not a happy camper when she fell asleep. Please say some extra prayers for her tonight...that she gets a good night's sleep and wakes up happy and healthy tomorrow. We sure don't need another sick girl.

Monday, July 26, 2010

My sweet girl

Reagan has been a real sweetie today. Making lots of sweet little sounds, giggles, and smiles...she has certainly been animated. She was also moving a lot more today. The good kind of moving like rolling onto her side and the bad kind of moving like clawing at her arms. She only had one therapy today...feeding therapy. She actually did really well. She ate a decent amount of applesauce without spitting any out. I was impressed. I guess I need to make more of an effort in feeding her things by mouth, she sure seemed to enjoy that applesauce. Of course she finished off therapy with a big poop! We had to change her before we left. I know she had to feel better after that (we were going on 6 days without a dirty diaper). Then this afternoon my Dad came into town to visit. He hasn't seen Reagan since her birthday when she slept the entire afternoon. He'll be here for a couple days this week and then he's coming back to stay with us two weeks from now when Mike has to go to Canada on business. Thank goodness he's here because our nurse already called in sick for tomorrow (about 30min after she left today). As for Reagan's new stander...it was a no go. The guy showed up with it and it was missing a head rest and foot straps (and had the wrong size knee supports). Needless to say, he took it back until all the correct parts come in. I was not surprised...this is not his first botched delivery. But after seeing the stander up close and personal, I'm a little concerned about the room for growth. If Reagan keeps growing at this rate, she might only be able to use this stander for another year. And then what? Medicaid only pays for this type of equipment once every 5yrs. If she's not walking by the time she outgrows this, does it mean she just has to go without a stander. I don't know. Hopefully not.

Sunday, July 25, 2010

Boring weekend

Today has been another boring day. Didn't go anywhere or do anything. Lots of lounging around. Reagan was still a little groggy again today...she fell asleep in my arms a few times. She was also a little gaggy, she made a few faces like she was going to throw up, but thankfully never did. Tomorrow they are supposed to deliver her new stander! What an ordeal to get that thing! It took months just to get our primary insurance to deny it (our insurance says standers aren't medically necessary) and then another couple months for the seating company to send the correct info to Medicaid. It's crazy, once Medicaid got the correct info, they approved it immediately. I really can't stand incompetent people. Then it was another couple weeks for them to order it, get it in and assemble it...it really shouldn't have taken this long. I'm just glad it's finally here. Now I have to figure out what to do with her old stander. I'm thinking about donating it to one of the two ECI programs we dealt with...both of which were severely underfunded and always needing equipment. Reagan's giant therapy room is nearly busting at the seams...I really need to spend some time organizing everything. In my spare time. Reagan's had an ipad for weeks now (thanks to Grandma) but we've hardly used it. Between her being sick and then me being sick, we haven't had a lot of down time lately. I guess this boring weekend was just what we needed.

Saturday, July 24, 2010

Sleepy day

We haven't done much today...or anything really. We did all manage to take naps. Reagan kept falling asleep each time we'd pick her up. Maybe she just likes to snuggle, I don't know. Hopefully she still sleeps tonight. She's been very mellow again today. Very smiley and easy going. I sure hope this continues. This morning was her last dose of prednisone. She's definitely having less chorea right now but it's hard to tell if that's due to the medicine or her just feeling better. I'm guessing the latter. We did get a sampler (28 day supply) of the tetrabenazine. Apparently this stuff is ridiculously expensive so they send you shipments directly from the supplier (a lesser version of ACTH). Problem is, I don't want to use it on a daily basis. Maybe when she's sick and the chorea gets so out of control that she can't sleep...but not every day. I don't know. Right now it's a non-issue but I'll probably have to talk to the movement disorder doctor about all of this. Please keep Reagan in your prayers for continued health and happiness.

Friday, July 23, 2010

Good night, good day

Reagan had another good night last night. She slept the whole night and woke up happy again this morning. She's still slightly groggy but very smiley and easy going. No therapies today but her teacher did come by and work with her. We also took a little walk this morning, of course we had to use mosquito netting and skin-so-soft, but we got out into the heat for a little stroll. I was actually feeling much better this morning but I still went in and saw another doctor. She prescribed some nausea medication and an antibiotic. Still no real tests to try to determine what exactly it is that's been bothering me. Then this afternoon it hit me again and I've been miserable all night. I have a feeling this weekend might bring a trip to the ER to get to the bottom of things. Such a miserable sick feeling...I pray that Reagan can stay well because I can't even imagine her having to go through with this. Please continue to keep our sweet little one in your prayers.

Thursday, July 22, 2010

Sleep

Reagan slept last night!!!!! Mike and I both woke up a few times to see her laying in exactly the same place, fast asleep. Finally! That girl needed some sleep. Reagan has been a complete doll today. She was still a little groggy most of the day but she did make it through both PT and OT this morning. She's also still very spitty (foamy spitty), but no throw up so that's good. I'm ready for her to get back to herself again. I'm ready for me to get back to myself again. I'm still feeling quite sick. I woke up in the middle of the night from nausea and have been sick most of the day. A week later and I'm still dealing with this. I have an appt tomorrow with another doctor...hopefully someone will get to the bottom of what's going on. I don't know if I can take another day of this. Please continue to keep Reagan in your prayers, she's still on the prednisone (which suppresses her immune system) so we really need her to stay healthy and continue sleeping...and while you're at it throw in a prayer for me please. (pictures below from her photoshoot in March)




Wednesday, July 21, 2010

Sleepy but no sleep

Reagan spent the entire night awake again. She was content to just lay there but I spent some time in her bed to make sure she didn't choke on her spit. She just laid there WIDE awake all night long. Today she's been cuddly and sleepy (go figure), poor thing could barely keep her little eyes open but she only actually slept for about an hour this morning. I'm hoping that she'll be able to get some sleep tonight but right now it's not looking great. She's exhausted but she's just laying there half awake moving her hands. We did split up her dose of prednisone today, instead of giving it to her in one bigger dose. Not sure if it will help (with the lack of sleep) but it's worth a try. Reagan had much less chorea today, maybe the prednisone is helping, or maybe she's just getting over being sick. I'm still feeling sick. I went in to the doctor today but he just put me on a reflux med and a nausea med until whatever it is clears my system. I've had this for a week now...much longer than a typical stomach bug. Now if only we could get me well and Reagan sleeping we'd be set. Please continue to keep us in your prayers!

Tuesday, July 20, 2010

Sick mommy, happier Reagan

Last night was horrible. Reagan didn't sleep more than 30min at a time. She was thrashing and moving and crying almost nonstop. Finally I just had to lay in her bed with her and hold her arms down all night (that is until my mom woke me up at 5am to take her to the hospital...I mean airport). It was exhausting. Reagan and I both did a lot of crying. I just HATE to see her like that. I think the prednisone made it worse. Of course two of the side effects are insomnia and irritability. Great...like we needed more of that. Anyway, despite the terrible, horrible night, Reagan woke this morning content. Yes, that's right...she's been in a good mood all day. No crying and even a few smiles. THANK YOU GOD. Seriously. I don't think I could have taken much more. She's still got a lot of chorea and she's been very spitty (and threw up twice) but she definitely seems to be feeling better. Then this afternoon my sickness really peaked and right now I feel like I should just crawl in front of a train. I guess I'll be heading in to the doctor's office myself tomorrow. I think Daddy is going to have Reagan duty tonight. Please keep us all in your prayers.

Monday, July 19, 2010

So sick of sick

Oh boy...it's been another rough day today. Last night Reagan woke up crying only one hour after laying her down. Mike laid down in her bed with her, then I tried laying down with her, and finally (with me restraining her arms) she was able to fall back asleep. She woke up once at 5am but fell back to sleep and then woke for good at 6:30am...crying. She's been miserable again today. She's been super sweaty and shaky. She was running a low grade fever this morning and threw up a good amount of spit and mucous. The chorea (nonstop crazy movements) have been out of control. Holding her is like holding a Tasmanian devil. She's clawing, biting, rubbing her face, kicking her legs and moaning nonstop. But lay her down and immediately she starts full out crying (can you say spoiled). She definitely prefers to be in an upright position today. On a good note, she was crying less and moaning more today, I guess that's improvement (although I'm still feeling sick). I spoke to the movement disorder doctor this morning and most of Reagan's blood tests have not come back but she did say that Reagan's CBC from Thursday came back with a high white cell count and a lymphocytic predominance (indicating a viral infection). Then we took her in to the pediatrician's office and she said Reagan's throat is "raw" again (but not strep). She thought starting her on the 5-day steroid treatment (prednisone) for the chorea might be a good idea and might actually help calm some of the inflammation in her throat. So this afternoon we started the prednisone and now we wait. It always scares me starting her on something new. She did have a couple weird episodes this afternoon that worried us a little. I can't really explain them, but something was off. She was really jittery and stiff. Her eyes widen and nostrils flare (and for a while it almost seemed she was holding her breath). She had us worried. Please say some extra prayers for our little one, she really needs to get over this sickness (and chorea) soon.

Sunday, July 18, 2010

Yet another bad day

On a good note, Reagan did sleep last night, so for that we are very thankful. But the sleep didn't seem to help her much because she woke this morning crying and has been crying ever since. She's been completely and totally miserable. Her throat has got to be killing her with all of the crying. Lots of chorea...arms are flailing, legs are kicking, tongue sticking out. It's exhausting just to hold her so you know she's got to be exhausted. She was so tired this afternoon (she must have yawned a million times) but every time she'd doze off a few minutes later she'd jolt awake and start screaming again! There was literally nothing you could do to make her happy. It's times like these I really wish we had something that could sedate her and help her sleep it off. Too bad this kid is resistant to every medication she's been prescribed! I guess we'll be headed back in to the pediatrician's tomorrow morning. Thank goodness she's working half days at a clinic about 5min from our house. It's so close and it's almost always empty. I just hope she can figure out what's bothering our girl. I tell you what, if she's having stomach pains like I've been having, then I already know why she's crying. I've been having horrible stomach pains and nausea since Thursday. Mine kind of comes and goes...but at times it's excruciating. I keep thinking maybe we both have some sort of nasty stomach virus. With me feeling so lousy, Grandma was nice enough to fly back in today. It's been a long time since she's had a weekend off, but I SO appreciate the extra help. Tomorrow we have another new nurse starting (to potentially work Mon/Tues), so we'll see how that goes. She wasn't able to do an orientation, so we have no clue what to expect. Who knows we may scare her away with all the drama. Please continue to keep Reagan in your prayers...she SO needs some good days.

Saturday, July 17, 2010

Crying again

This morning started off well enough. Reagan even woke up in a decent mood. I decided to leave her with Daddy so I could go and run some errands. When I came back she was crying hysterically. Mike said she started up at noon (only 30 min after I left). Of course this made me guilty for even leaving. That's just the worst feeling to go and come back to a screaming baby. Unfortunately things did not get any better. Reagan continued to cry all afternoon and night. She'd fall asleep on my lap for a little while and then wake up crying again. We're not sure what exactly is bothering her. She did have two liquidy poops today...so maybe it's her tummy. But she also seemed to be grabbing at her mouth when she was crying. So maybe it's her throat or teeth. Who knows really. Maybe all the chorea last week and then the sleepiness yesterday was just a sign of sickness to come. Ugh. I hate it when she's sick. When she's unhappy, we're all unhappy. Not to mention I haven't been feeling well the last couple days either. Please keep our little princess in your prayers. Prayers for a good night's sleep and prayers for a happier, healthier day for everyone tomorrow.

Friday, July 16, 2010

Movement disorder clinic

Today has been an interesting day for Reagan. She slept in. I finally had to wake her up at 10:30am and she was not happy about it (never wake a sleeping baby...words to live by). She's been doing this coughing thing when she wakes up, I don't know if it's her trying to clear her throat or what, but I don't like it. Coughing makes me nervous. She only does it when she first wakes up (or choking on something during the day)...but it still makes me nervous. Then we headed into town to see the movement disorder specialist. Reagan was kicking up a storm in the car but once we got there she calmed down a bit. I liked the doctor. She said that Reagan's chorea is either Syndeham's chorea, caused from strep infection or rheumatic fever, or just another neurological quirk. She took video to review with some other movement disorder specialists and ordered a ton of bloodwork. She recommended a few treatment options...1) try a short course of steroids (which can sometimes stop the chorea for good, but may do nothing while taking a shot to her already weak immune system) 2)try something called Fluphenazine (which has been known to work but also has the potential side effect of tardive dyskinesia, an irreversible worsening of the movements) 3) try tetrabenazine (known to have a side effect of sedation and apparently very expensive). In my opinion the second one is completely out of the question...we don't need to make matters worse. So then it's between the other two. I like the idea of the steroids stopping the movements for good (although that seems almost too good to be true). But we really just need something to use on an as needed basis, when the movements get out of control and interrupt daily life (like preventing her from sleeping). The doctor isn't sure if the tetrabenazine will work like that (usually you have to build up a level of these meds in order for them to work effectively). Where does that leave us? I don't know. I told her I wanted to think about it. I'm interested in seeing how the bloodwork comes back. They took 8 tubes of blood...I think that's a record. Poor thing. She's so good though, not a peep out of her. On our way home she fell asleep in the carseat and once home she continued to be groggy. She'd be asleep one second and awake the next. She kept making these sweet little cooing noises. She's such a cutie. I didn't even think about it til now, but that's a lot of sleeping today. And to top it off, she fell asleep early tonight. Not sure why she's so sleepy. Hopefully she'll still sleep tonight. Please keep it in your prayers that she stays happy and healthy.

Thursday, July 15, 2010

Chorea happy

Today has been another great day for Reagan. She's been all smiles and giggles all day. She started off with some more of the crazy chorea movements this morning. She's actually had it to an extent all day, kneading her hands, kicking her legs, lots of extension. Not sure why it's picked back up again (I hope she's not getting sick), but we just so happen to have an appt with a movement disorder specialist tomorrow at Texas Children's so hopefully she'll be able to help. This morning Reagan had PT and then she had feeding therapy this afternoon. She's been pretty spitty again, so that wasn't necessarily good for either of her therapies. About 20min into feeding therapy she got gurgly and chokey and her therapist spent the rest of the time trying to get Reagan to clear her throat. It wasn't until we got home from feeding therapy that Reagan really let loose. She was squealing and laughing nonstop...it was hilarious. Now I know it's probably related to the chorea, but it's just nice to see her happy no matter what the reason. Please keep it in your prayers that the good moods continue and that she stays healthy.

Wednesday, July 14, 2010

Busy day, new nurse

Reagan has been a darling again today. She slept well last night and woke all smiles this morning. She did have a crazy episode of chorea right after waking up (like she was running in place) but other than that things have been great. She had her vision therapist, her "teacher", and PT all come today (I say "teacher" because all she really does is read Reagan books...not much teaching involved in that). We had a new nurse start today (to work Wed,Thurs,Fri)and so far so good. She lives in our neighborhood...literally two roads down from us. She seems to be really good with Reagan so it looks like we might be sticking with nursing a little bit longer. Now we just have to find a Mon/Tues nurse. The one that worked this week decided that the drive was just too much for her (or should I say her husband, since he had to drive back and forth twice a day because they only had one car). Hopefully we'll get all of this settled soon and finally establish some sort of routine for everyone's sake. Reagan's new gj-button is definitely an improvement over the previous one, although it did leak at one point today which really worried me (but I think it's just because she spent some time on her tummy putting direct pressure on it). Hopefully we won't see any more leaking out of this one. Please continue to keep little Luke in your prayers...heart surgery went well and now he's in recovery in ICU...he's probably not going to wake happy, so continued prayers are definitely appreciated.




Reagan seems more interested in the dog...he's just trying to ignore her.

Tuesday, July 13, 2010

Another new gj-tube and prayer request

I woke up at 5am to take my mom to the airport and Reagan woke shortly after I got home (I think she can sense me trying to fall asleep). So much for catching some extra sleep! Reagan has been in a great mood today, so I can't really complain. Very smiley and cuddly. She was an absolute angel when we took her in to get her gj-tube changed out. Good riddance to that leaky tube. This time they let me go back with her...usually they do it in an operating room and I'm not allowed in. This time they did it in a regular x-ray room (not sure why). Reagan was so good. They were holding her arms and legs down, which I'm sure wasn't too comfortable, but she didn't make a peep. Such a good girl. The new tube did seem to move around more than previous ones but I'm hoping that was just due to the lubricant they used to insert it. The only little mishap we had was almost 6hrs later when Reagan threw up the contrast they had put through the g-button to make sure it was positioned correctly in her stomach. Not sure why it was still in there 6hrs later, but Reagan took care of it. So we've been waiting for days for a dirty diaper and finally tonight we got what we were waiting for...although a little more liquidy than I would have liked. I'm just glad she finally went. Today was 6 days without going. We really need to figure out something to get her going on a regular basis. We've tried just about everything and nothing has worked well with her. On another note...I would like to ask everyone to say a special prayer tomorrow (Wed) for little Luke. He's the son of our friends that lead our Bible study group. He has a minor heart defect that they were hoping would close on it's own but hasn't and now he's having heart surgery tomorrow to repair it. Their first child, Josi, was born with a major heart defect that had to be repaired right after birth...so this family has already been through a lot and has unbelievable faith. Please keep them in your prayers!

Monday, July 12, 2010

No crying

Today has been a better day for Reagan. I think the antibiotic finally took care of the ear infection. She's still not back to herself, but there was no crying today so that was a huge improvement. She was very groggy most of the day. Smiles were very hard to come by. She felt warm and had red hot cheeks but wasn't running a fever. The new Mon/Tues nurse started today and she was much relieved to see Reagan feeling better (she came on Friday for an orientation while Reagan screamed nonstop). Today our issues have been in the poop department. It's been 5 days of nothing and that's with daily lactulose and a pedia-lax enema this afternoon. Still nothing. I'm afraid we're going to have a big mess to clean up tomorrow morning. I just want her to get it out already! Poor thing. Tomorrow Reagan's got a 2pm appt to get her gj-tube switched out. I hate that we're having to change it out early but the leaking is out of control. Please keep Reagan in your prayers...for a full recovery and a uneventful tube change.

Sunday, July 11, 2010

Less crying/Leaky gj tube

Reagan woke up last night around 4am. I got up with her...I knew things were looking up because she wasn't crying. She was big eyed and looking around. Eventually she started fussing and grabbing at her ear again, but for her to go any length of time without crying was definite improvement. She's still had her moments today. There have certainly been some meltdowns especially this morning. So much so I called the doctor on call to ask if there was anything else we could do for her ear ache. She called in some numbing drops for her ear. I wouldn't say we saw immediate improvement, but overall her afternoon was better than her morning so maybe the drops helped. Grandma flew in today. She wasn't planning on coming in this weekend (after her long weekend here last week) but she was too worried about her baby to stay away. I'm hoping tomorrow will bring even more improvement for our little one. We have a new nurse starting tomorrow so we'll see how that goes. Should be interesting. I also plan on calling Reagan's GI doctor and requesting a new gj-button. Ever since we got this new one it leaks (formula). The first one she had NEVER leaked. This one started off leaking right away, when any sort of pressure was put on her tummy (laying her on her tummy or holding her on your shoulder would trigger a leak). Ever since she's been sick and crying a lot...it's just leaking all the time. I think it's becaues she gets all tensed up and the pressure of her tummy contracting forces it out. The thing is, this tube runs all the way through her stomach and down into her intestine, no formula should come out of it until it gets to her intestine. Obvioulsy there's some sort of flaw, so hopefully we can get it switched out and problem solved. This poor girl, she goes through so much. She threw up tonight again. Just all of a sudden it hits her and out it comes. Poor girl. Please continue to keep her in your prayers. We need some healthy days for our girl.

Saturday, July 10, 2010

Ear is still aching

Thanks everyone for your support. It has been a rough couple of days for our little one. I wish I could say everything was much improved today but I can't. Reagan did sleep a little better last night. Maybe it was the second dose of Ativan that did it, who knows, I'm just glad she got some sleep. She woke up at 5am crying, I got up with her and tried to soothe her (gave her another dose of Ativan) and finally she just cried herself back to sleep. Today she's done a little more whining/fussing than screaming/crying so I guess that's a little improvement. She's also been a little more sleepy...maybe because of the Ativan...but the pediatrician told us to use it every 8hrs to try to soothe her until we can get the antibiotic to kick in. She's still grabbing at her left ear a lot. We have to put her hair back with a headband because she keeps pulling her hair. Then tonight she threw up...poor girl just can't catch a break. Today was our favorite nurse's last day. Boy am I going to miss her...she was so great with Reagan. And I knew she was a perfect fit the second I met her. I had come to have complete trust in her. That whether I was here or not...she would treat Reagan exactly as I would (but with even more patience). When she was here I could go and do things, run errands or do whatever needed to get done. It's going to be a while before I feel comfortable leaving Reagan in someone else's care again. Too bad Reagan wasn't in a better mood for her last day. We are sure going to miss her. I ask that you would please continue to keep Reagan in your prayers...these antibiotics have to kick in sometime right?!?!

Friday, July 9, 2010

Inconsolable

It's been a rough 24hrs. Needless to say, the clonidine didn't help last night. Reagan cried the entire night. The chorea is out of control. She's clawing at her arms, scratching her face, pulling her hair. I had to lay in bed with her and hold her arms down just so she could get a few winks of sleep. It was an exhausting night and the day hasn't been any better. We had about 15min of quiet this morning before the crying picked back up. It's amazing the endurance this girl has...she can literally cry for days! She's been inconsolable all day. She's been crying so much she's hoarse. We tried Ativan this morning to try to calm her down, but it didn't seem to do anything. We tried tylenol and motrin, nothing. We took her in to the pediatrician and she does have an ear infection in her left ear. How she can get an ear infection while on constant antibiotics is beyond me. So now we're switching over to a different antibiotic Suprax...hopefully that will do the trick...soon. I'm not sure how much more we can take. It's so hard to watch her suffer like this. We feel completely helpless. NOTHING we do seems to help. I just hope that somehow, someway she's able to get some sleep tonight. I know she's beyond tired. Problem is, IF she falls asleep (and that's a big if), she's so hypersensitive she wakes up the second you try to move her. Please say some extra prayers for our sick girl tonight...she really needs them.

Thursday, July 8, 2010

Crying

So today's been a weird day for Reagan. Last night she kept waking up crying and then falling back to sleep. She only required me a few times to soothe her, but most of the time she fell back to sleep before I could even get to her room. Needless to say, I don't think either one of us got very much sleep. Then when she woke up this morning she seemed fine. Still coughy and spitty but OK. The chorea has picked up again. Lots of movement and that includes rolling. She's been rolling onto her side all day (both sides but she favors her left). She was vocal again throughout the day but many times she sounded agitated (sort of an in between happy and mad sound). Then around 5pm she started crying and has been crying ever since. Inconsolable crying. I have no clue what is making her this upset. She did have some gas, so maybe it's tummy pains, but it's been a long time since she's had tummy pains that made her cry like this. As time went by she started getting tired but still continued to cry. Around 9pm I tried giving her some clonidine, so far all it's done is make her really sleepy but hasn't stopped her from crying (only now she's crying with her eyes closed). Please say some prayers for her...she's beyond miserable and pathetic right now.

Wednesday, July 7, 2010

Still sicky

Reagan did not want to go to sleep last night. Daddy laid in bed with her but she was just not falling asleep. We let her lay there for a while, but when I woke up at 1am she was still awake so I gave her some clonidine and I think that did the trick. She woke up this morning still very coughy but I think the mucinex did help thin it out because she was less gunky sounding (although still super spitty). You can tell she still doesn't feel well. Then the homebound teacher came this afternoon (only the 2nd time all summer) and Reagan fell asleep halfway through. I don't blame her though. Let's just say that I'm less than impressed with the homebound teachers they've been sending out. When this lady was here you could hear crickets chirping in the room! Unless she was reading a book or talking to our nurse, there was complete silence. Where do they find these people?!?! Of course, we've had the same problem with nurses. I think I've finally decided to go back to an attendant. I placed an add on care.com and interviewed some people this past weekend. I actually had some pretty decent applicants this time around...makes it a little harder to make a decision. Our favorite nurse's last day is Saturday. We will really miss her (although I won't miss nursing in general). They spend way too much time "charting" (writing up these super long detailed notes) and less time focusing on the actual child. Not to mention the agency has really done a poor job in staffing. They were notified a month ago that our nurse was leaving, yet they haven't sent out a single person to potentially take her place (and they don't even know that we're planning on leaving yet)!! Not to mention, I think the nurse that started last week is the person that got Reagan sick! I just thought about it today but originally she was supposed to come on Tues of last week but she called in sick with a head cold. Then Thursday she was coughing and I said "you better not be sick" and she said it was just allergies. Yeah right. Contagious allergies. Good riddance. Tonight Reagan was very vocal. Lots of "talking", even with all the coughing. Poor girl. Please keep her in your prayers as she continues to fight this gunk.

Tuesday, July 6, 2010

Coughing, choking, sneezing, oh my

Reagan woke up this morning coughing, I mean really coughing and choking. Not good. She's been very congested and gurgly all day. Sneezing too. You can tell she feels lousy, but she's kept a smile on her face. Poor girl. We took her in to the pediatrician's office this morning and she bumped her antibiotic up to Augmentin. She said there was some fluid in her ears and lots of obvious congestion in her sinuses. We're going to try some Mucinex tonight to see if that helps. Reagan threw up a few times tonight. Each time there was a lot of foam and clear liquid that came up. I don't necessarily think it's because she's nauseous...I think it's because of all the drainage down her throat. Poor thing. Throwing up is SO not fun. We definitely need some prayers for her. I also spoke to the GI doc today and she thinks we can decrease Reagan's feeds down to 40mls/hr for 20hrs a day (about 3oz less than she's been getting). We weighed her today at the pediatrician's office and she was 34lbs (that's another pound since last week)! She's gaining a little too quickly so hopefully this decrease will help. Please keep our sick little one in your prayers...

Monday, July 5, 2010

Poop talk

Today Reagan was almost a carbon copy of yesterday (except that the smiles were more easy to come by today). She was still very spitty and loosey goosey all day long. When I say loose, I mean loose. It's like holding a 33lb rag doll! Not sure why she's like this right now. We haven't made any medication changes or anything, so it's kind of weird. Maybe the trauma of last week just wore her out so much, she's still recovering. I don't know...who knows. And the spit. Goodness gracious, this girl is SO spitty right now. And constantly choking on it. It almost seems like she has a cough but it's just her choking on her spit. Poor thing. And now for some poop talk (if that offends you, go to yesterday's post and look at her 4th of July pics). We had quite the surprise this morning. Reagan slept through the night but woke up with the biggest drippiest dirty diaper I've ever seen. Of course I didn't know this until I started carrying her out of her room and I felt a drip hit my foot. I turned around and there was a trail of poop going back to her bed. It was all over me, all over her, all over her floor, in her bed, it was a giant mess!!! Thankfully I had put a waterproof pad under her last night because I was expecting her to wake up with a big wet diaper, but she surprised us with so much more! It's my fault really. The last couple weeks the fruiteze has not been cutting it for her. I transitioned her off the Miralax and onto the fruiteze because it's a natural laxative...but it was just not doing it's job. So her pediatrician recommended something called lactulose, a syrupy sugar solution. A couple days ago I stopped the fruiteze and started her on a daily dose of the lactulose...and today is the result of that. It seems to be working but I think we may want to cut back a little. Live and learn.

Sunday, July 4, 2010

Happy 4th

Reagan has been a real sweetheart again today. She slept well last night and has been such a sweet, easy going girl today. She's still very floppy, no tone whatsoever. We've really been battling the spit today, she's been super spitty and just not controling it well. Lots of coughing and choking on it. I wish there were a way to just get her to swallow it already! No big plans for us today (in case you haven't noticed, we don't get out much). No fireworks...but Reagan did look cute in her 4th of July outfit! This afternoon right before it got dark we took her down the road to a school that has a special needs swing (I've been looking into getting her a swing for our house). She seemed to like it, although we couldn't swing her too high because it didn't have a harness or anything. We also went down a slide with her (another first). I think she would have enjoyed it more, but it was very short and very slow. Now carrying her to and from the playgroung...that was not fun. Carrying her is like carrying a sack of potatoes. She's up to 33lbs now. She's actually beginning to get a little chubby. You can really see it in her face. I'm glad she's put on weight (she was skin and bones for a while) but we're going to have to keep this in check so we may be cutting back her feedings in the near future. Hope everyone had a great 4th of July!!! Time for bed...








Saturday, July 3, 2010

Out of it

Reagan has been a little groggy and dazed most of the day today. I thought she slept well but who knows. We had some friends from out of town come over today that hadn't seen Reagan in quite sometime but Reagan was just not "on". She was very quiet and out of it, Grandma did manage to get some laughs out of her, but smiles were really hard to come by. This afternoon I noticed her kind of staring off into space with a startled look in her eyes. Reminded me of the weird eye movements we've seen in the past...only this was more of a stare (instead of movements). Not a fan. Looks seizureish to me. I just really wish we could get her back to herself again. I know she went through a lot last week, but I sure miss my sweet happy girl! She's also been running a low grade fever all day. The last few nights the only way we've been able to get Reagan down for the night...Mike crawls in bed with her until she falls asleep (usually both of them fall asleep). A little high maintenance, but we're desperate for some sleep! What are we going to do with this girl?


Before...



After...

Friday, July 2, 2010

Better day

So today was a better day. Reagan slept the whole night last night and woke up this morning at 8:30am in a much better mood (I think waking up to Grandma had something to do with it). She's been a little needy today (wanting to be held a lot), but I'll take needy over screaming any day! The day didn't start off too well...our favorite nurse bailed on us (car problems). I was NOT happy. I actually had a whole list of things I needed to get done with her here. Instead we just sat in the house watching it pour outside. We've got a small lake behind our house now. Reagan's spent a good portion of the day in la la land. She's been a little sleepy but only when you're holding her. I tried to lay her down tonight and immediately she was wide awake. I left the room for only a minute or two and the next thing I know she's throwing up all over herself! Poor thing. Just out of nowhere...no clue where that came from, she hasn't even been gaggy today. We've actually gotten quite a few laughs out of her today. We were hanging some pictures and she'd just laugh and laugh every time she heard the hammer banging on the wall. I'm just so happy to see a smile on her face...it's been a rough couple days. Thank you all for your prayers and please keep them coming!

Thursday, July 1, 2010

Worse not better

Ugh. Where to begin? I thought things were supposed to be getting better but Reagan seems worse today than she was yesterday. She woke up crying and cried almost nonstop all day long (not the best day to have a new nurse starting). We tried tylenol, motrin piggybacking tylenol, clonidine, naproxin (aka aleve), neurontin (for chronic pain), and tylenol with codeine...nothing worked! The only thing that seemed to do anything was some oragel pm rubbed around her teeth (and that only lasted 30min-1hr). She was miserable. All morning I fought over the phone with the dental clinic and I finally convinced them to allow us to come in to have the dentist look at Reagan's teeth. Turns out, the teeth look fine but there's a big ulcer in the back of her throat from the intubation! GREAT. Just great. Nothing but problems with intubating. Reagan's pediatrician recommended a concoction of Benedryl, Maalox, and Oragel for Reagan to take orally and a couple hours later she vomited it all up (multiple times). Horrible. Can this kid not catch a break?!?!? Nothing is helping. We need her to just heal already. Is it too much to ask for improvement? I hope not. Sorry for the complaining but we're stressed!!!!!!! Please say some extra prayers for her...