Monday, May 31, 2010

Still under the weather

Reagan slept through the night last night! That's right, she slept from 4pm yesterday afternoon til 6:45am this morning!! Thank you God!!! I was so worried she'd wake up in the middle of the night, I kept waking up to look at the monitor! She woke up content this morning but threw up first thing and continued to be gaggy most of the day. She was also running a low grade temperature and very stuffy/snorty. She must be fighting something off right now. That would explain everything we've been seeing the last couple days. Our favorite nurse was here today so she kept a close eye on Reagan all day long. No therapies today, we just had a laid back day here at home. This afternoon I had to take my mom back to the airport. She's been here since Friday, it was sure nice to have her around (she's such a huge help to me), it's just too bad that Reagan was not feeling well. Hopefully she'll get over this quickly and be back to her happy self again. Please keep her in your prayers.

Sunday, May 30, 2010

A long nap

Today has been a strange one for Reagan. So after laying in bed awake for quite sometime last night she finally fell asleep...and slept. She slept through til 9am this morning (thank God). She actually woke up in a decent mood and even though she wasn't loving me, she was fine for Daddy and Grandma. She spent a good amount of time on the floor squirming around in circles...but she was very tense. You could hardly hold her, she was so tense. And still trying to bite those fingers. We had to watch her constantly to keep her from biting herself again. Mike and I were actually able to get away this afternoon for a round of golf (thanks to Grandma). The heat was brutal. I played surprisingly well (for not playing in almost 2yrs). Reagan was tired and after fighting sleep for a while finally settled down and took at nap. But this wasn't just any nap. When we got home from golf at 6:30 she was still sleeping. Finally around 8pm I picked her up but she was still out cold so I put her in her bed. Lots of times I've looked in on her and seen her stretch but she always stays asleep. Maybe this is just her way of recovering from feeling not quite right. I'm hoping she'll sleep through the night...but that may be wishful thinking. We're all going to be hurting if she wakes up in the middle of the night. I want her to get over whatever this is and get back to her happy sweet self! Please keep her in your prayers.

Saturday, May 29, 2010

Streak ended

To our dismay, today Reagan's streak of good days ended. She's had weeks of consecutive good days and POW! it all ended today. I have to say I saw it coming. It all started with the clammy hands and feet. And the last two nights she's just been off. Then this morning she was still a little off. Very tense, lots of crazy laughter, and very sensitive to anyone interacting with her. And while my mom and I were out shopping (and Reagan home with Daddy), she bit her thumb. Well that was it. That set off the tears that lasted the rest of the day and into the night. And although I could see teeth marks on both sides of her little red thumb, it's more than that, somthing was already in the making and that just set her off. She was completely miserable. I tried tylenol...nothing. So tonight I whipped out the trazodone...if ever there was a time we needed a sleep aid tonight was the night. I gave her the low dose her neurologist told us to start off with 1/4 50mg pill (he doesn't have a lot of experience with this specific medication so he was being cautious). Nothing. Not surprising since Reagan usually takes higher doses on most medications. Two hours later I gave her another 1/4 tablet and about 5min later she calmed down and stopped crying. The tension came out of her body but no sleep. We put her in her bed hoping she would soon fall asleep and she's just laying there moving her arms around. What do we do with this girl? I keep hoping she's going to wind down and fall asleep...please fall asleep....and sleep through the night. We all really need a break from the crying. Please keep her in your prayers. We have no clue what's wrong and no idea how to help her, all we can do is put this in His hands and ask that He help our little one.

Friday, May 28, 2010

Bed shopping

Reagan is giving us a little grief in the sleep department. She's sleeping at night (and I am beyond thankful for that) but she's been difficult to get to sleep and then she wakes up crying each morning. Last night when I laid her down she was completely asleep, as soon as her head hit the pillow, she sprang awake like she was startled and then laid there in bed with her arms straightened up into the air. Eventually she settled down and fell asleep. Tonight she's doing a similar thing. She's exhausted but she's been doing this crazy wild eyed thing where she's got super human strength and you can't even hold her still. We had a busy day today...so maybe she's just over tired. Her teacher came this morning and then we were off to Ikea. It was beyond crowded (bad idea with my immune compromised child)...I guess lots of people were already off for the holiday weekend. We just did our best to avoid the people, looked at what we needed to see and left. We had been thinking about getting Reagan a daybed and they had a good one, but as it turns out it's off white and will seriously clash with her other bedroom furniture. So from there we went to Rooms To Go and the Roomstore. We found comparable beds at each and I think we finally decided on one. Haven't bought it yet, but maybe this weekend. Decisions decisions. Maybe she'll sleep better in her new bigger bed. I'm beyond tired and Reagan is too...she's been yawning nonstop since I put her in her bed. But she's a turkey and so far no sleep. Here's to a good night's sleep and a restful weekend.

Thursday, May 27, 2010

Tutu cute

Reagan woke up crying this morning (and for the second day in a row) she cried for a few minutes and then got over it. It's always worrisome when she wakes unhappy. She did have two pretty big throw ups this morning but other than that she's been great. She was such a darling all day. Lots of laughing and "talking". She mumbles sweet nothings in this quiet little voice...it's so stinking cute!! It sounds like she's saying real words. She had PT this morning and did much better with the head control today. We made some adjustments to her old stander and even though it doesn't want to stay upright, at least it's fitting her better now. The new stander is still going through insurance. Our primary insurance already denied it (of course it took them 3 weeks finally deny it, but whatever) and now we're waiting on Medicaid to approve it. Hopefully that all goes through easily because we really need a new stander for her. So this afternoon we're giving Reagan a bath in the bathtub and I notice what I refer to as "the poop face". All of a sudden she gets very serious and stares off into space. Sure enough...she's pooping...in the bathtub!!! Thankfully we had just gotten started and her hair was still dry. So we waited for her to finish and then pulled her out, wrapped her up in towels while I cleaned both her bath chair and the bath tub and then reran her a new bath. Meanwhile she was just laughing up a storm! She's a turkey!! She had another dirty diaper later on...two in one day...we hit the jackpot! Things continue to move on...without Miralax (which is great). So now she's off Miralax, off Risperidone, and off Klonopin! Good riddance! Of course I've added probiotics and fruit-eze to the mix, but it sure is nice to have her on less "medications". Below are two pics from her Littlest Heroes photoshoot...more to come...


Wednesday, May 26, 2010

Progress

I don't know how to explain it except that something seems to be clicking for Reagan. Things finally seem to be coming together. She's doing SO much moving and "trying" to roll but she's also really investigating her hands. Bringing them to midline, grabbing her other hand, putting her hands to her mouth...this is a big deal. This is a kid that was always cortically fisting 6 months ago (not good...it's a sign that something is wrong with the central nervous system). But the first thing we noticed when her seizures stopped, she stopped keeping her hands in fists. She opened them up but still wasn't using them much. It's just lately...just since last week...since all of this increased movement that she's really exploring her hands. All the time. It's amazing! And HUGE progress for her. I'm so excited. It really seems like things are falling into place for her...and quickly. She's making better eye contact, interacting more with people, laughing appropriately, making lots of sounds. So awesome! Today she had her follow-up appt with the immunologist. It was forever before we finally saw the doctor! Our appt was at 9:15am...we didn't see the doctor til noon! She asked how Reagan was doing and I said "GREAT!". I don't think she gets that a lot because she looked pretty shocked. Her response..."Then I don't want to touch her!" She did a quick exam and then quickly went over her test results. The tests basically said that Reagan has very little immunity. This makes sense because she hasn't been vaccinated since 4mo but theoretically she should have higher numbers even without vaccinations. The doctor said the only way to determine if she's capable of initiating a sufficient immune response is to vaccinate her and then check her antibodies afterward to see if her immune system generates antibodies to the vaccine. Problem is...she's seizure free for the first time ever and at this time I am not willing to vaccinate her and risk losing that. So her suggestion is to keep her away from all sick people and kids. Stay away from highly populated areas daycares, schools, even church! She also suggested to keep her away from anyone newly vaccinated with live vaccines (such as chicken pox). If she's exposed to someone with chickenpox or the flu, we're supposed to call her immediately. So that's it. We have to keep her away from any sickies and say lots of prayers that she stays healthy! As of now, she's still great! Super sweet, laughing it up all day long! She really has been a complete joy lately and I pray it continues!

Tuesday, May 25, 2010

Sweet and squirmy

Reagan has had yet another wonderful day. Super sweet, giggly and smiley. We have been so blessed to have her happy and healthy for so many consecutive days! Huge answer to prayers. Huge. Tomorrow we have an appt with her immunologist. I'm interested to hear the results of all of the tests she ran. Should be an interesting appt. Reagan went to bed early last night and woke up early this morning around 6:45am. During "class" with her teacher she looked like she was going to doze off. She was in her stander, eyes completely closed, but maybe that was just her way to get out early. It worked...we took her out and then she was wide awake! Silly girl. Reagan had an ARD today (in which I participated by phone) to say that Reagan will be receiving ESY services (extended school year). So instead of going from June to the end of Aug without "school", they'll continue her services over part of the summer. It's good because I do think she needs it, but at the same time I think most of the homebound services we've received so far are completely worthless. Whatever. We'll see how it goes. Reagan has been squirming all over the place again today....turning in continuous circles on the floor. So funny. This afternoon she had PT and showed off some of her moving skills. It's funny, her head control in sitting left a lot to be desired but when her therapist put her on her tummy, she held her head up like a pro! I think it's because she wants to crunch and bend at the waist (like to roll), unfortunately that doesn't work too well with sitting. So with Reagan moving all day long and waking up early...she was out cold by 8pm. Very uncharacteristic for her. Too bad it didn't last, she was back up by 9:15pm. Oh well, you can't win them all. No fever today but her little cheeks were bright red most of the day (and feet super cold). Prayers that she stays healthy are greatly appreciated.

Monday, May 24, 2010

Pump problems

Not a lot going on today. Reagan had occupational therapy this morning and showed some of her moves to her therapist. By the time she got to feeding therapy her mood had dulled a little...maybe she was worn out. She just wasn't as smiley as before. She did eat some applesauce and did a good job swallowing it all down. Funny thing, as soon as we walked out of therapy, the smile was back! She's still moving around a lot today. It's funny because it's really her lower half pulling herself around. Tonight she fell asleep at 9:30pm on the floor. I think she wore herself out. I'm OK with her going to bed early, as long as she doesn't wake up at midnight ready to go! She did have a low grade fever this afternoon. I hope it was nothing but we do need some prayers that she stays healthy. It's been so nice to have her healthy for more than just a couple days. We have had a little drama today with Reagan's feeding pump which is seriously about to drive me crazy! It keeps beeping and saying it has No Food (when it's full)! We've had it replaced multiple times because of this error and each time, we get the same error message again (this time it was a week later). It's not Reagan's tube, everything flushes easily through it. It's not a clog in the bag or line because you can prime it just fine...it just doesn't want to run!!! Right now it's just a nuisance, but if it decides it's not going to run anymore, then we've got a serious emergency! That's the problem with continuous feeds (which you have to do with a j-tube)...it's really not feasible to do it by hand for any length of time. I'd love to just switch brands of pumps, but the Zevex Infinity that we have is by far the smallest pump on the market. I can't imagine having to lug those bigger ones around. So for now we'll just continue to trouble shoot it and pray that it continues to run!

Sunday, May 23, 2010

Happy girl

Reagan threw me for a little loop last night. I went to sleep around 11:45pm...then at midnight guess who wakes up crying. I could NOT believe it. I had just fallen asleep! And she was crying crying. I talked to her, not wanting to pick her up thinking then she'd be completely awake. Turns out she did have a wet diaper so I changed that and eventually she calmed down and went back to sleep. Crisis averted. As it turns out, she then slept in, not waking til around 11am. Reagan has been in another great mood today. I put a blanket down on the floor and let her go! She turned herself around and around, making circles on the floor with her half rolls. She'd kick her toys and use them as leverage to get around. She was just as happy as can be! All the movement finally wore her out and she took a little late nap. Uh oh. Not sure how that's going to work with getting her to sleep tonight. She's really been in a great mood lately. Hopefully it will continue and she'll impress all her therapists this week!!


Saturday, May 22, 2010

That's how she rolls

Reagan has had quite busy day today. She woke up early this morning and has been going, going, going all day long. Now she didn't have any therapies and we really didn't take her anywhere today but she has been moving on her own accord. So close to rolling. She'll pull her knees up to her stomach and turn her entire lower body to the left, all the while keeping her head turned to the right. That's what's keeping her from completely turning over. She's definitely getting some serious ab work accomplished. If you help her a little, next thing you know she's on her belly. We put her on her tummy a lot today too and she was really squirming around. I figured she'd completely wear herself out and crash hard tonight but so far no such luck. The sleep lately hasn't been all that great. I'm waking up a lot too. It's hard to tell if it's because I hear her moving or if I'm just paranoid. Either way, I've really been dragging lately. Praying for some solid sleep tonight and more good days for our sweet girl!

Friday, May 21, 2010

Brand new gj-button

So while Reagan continues to be in great moods, she was having some issues falling asleep again last night. You could tell she was exhausted, she'd doze off, and then jolt back awake again. Over and over again. Finally we just laid her in bed, but who knows how many times she woke back up. As the morning neared she'd cry out, move around, but by the time I'd get to her bed, she'd be back out. She did this quite a few times too. So needless to say, no one really got a solid night's sleep last night. As far as her days go, we couldn't ask for a better girl! I can't even believe how smoothly the gj-button replacement went today. We got there for our appt at 1pm, they took her back around 1:20pm and they brought her back out to us 20min later...just as happy and content as before! Amazing. This girl is such an angel. On the way home you could tell she was sleepy but she continued to have a hard time staying asleep. She kept jolting herself awake over and over again. As soon as we got back home she was wide awake and ready to go! Very alert, making lots of great eye contact with those big blue eyes. She even through in some laughs and squeals as well. She's been great. I just love to see her this way because I know she's feeling well. We even had another unsolicited poop today! Who needs Miralax...she's on a role! Good days for my girl. Please keep it in your prayers that they continue!

Thursday, May 20, 2010

Praise!

Finally...we got back the results of Reagan's 23hr EEG. After mulling over the rude words from the epileptology nurse for a couple weeks, I finally decided to call the scheduler in the office and report her rude comments. He apologized profusely and then forwarded my voice mail on to the epileptologist (who also apologized profusely). After getting my message, she immediately read Reagan's EEG and they called me today with the results (3 weeks later). It reads..."There are multiple push button events during drowsiness or wake where the parents report the patient has a brief jerk or head drop. None of these events have a clear electrographic correlate or disruption of the background activity. No clinical or electrographic seizures are recorded." For those who didn't follow...that means NO seizures!!!! Praise God! Seriously. It's a miracle really, because these "twitches" she's been having, they look just like seizures. But they're not! I can't believe it! Thank you God!!!! Thank you, thank you, thank you!!! Reagan had a great day today. She slept well last night and woke up feeling great. Super sweet, talkative, lots of giggles and squeals...we couldn't have asked for more! She had physical therapy this morning and was doing a great job! Her therapist commented on what a great week this has been for her. Then she had feeding therapy this afternoon and ate a good portion of applesauce. Not too fond of the veggie sticks today. Oh well, can't win them all. Grandma finally made it in late this afternoon after multiple flight delays. Reagan was in great spirits and kept Grandma entertained while Mike and I went to Bible study. Reagan had two poops today (one of which she saved for Grandma). That Fletcher's really did the trick yesterday! It's miracle stuff...we will always have it on hand from now on!

Wednesday, May 19, 2010

Good girl

Reagan was still awake again last night when I put her to bed (around midnight) but I checked back a little later and she had already fallen asleep. I just assumed she slept the whole night through but this morning she slept in til 10am and took a couple cat naps today (very unlike her) so maybe it wasn't as good of a night's sleep as I thought. She woke up gaggy and has been gaggy all day but thankfully never threw up. Her mood has really been great despite the nausea...she's such a good girl. This morning her teacher came by because Reagan was still sleeping yesterday when she was supposed to come by. Reagan was very happy and alert today...although not as happy and loud as her teacher (I think she may have had way too many cups of coffee)!! We did have a little stress today (as can be seen now by the cold sore on my lip). Yesterday I checked Reagan's gj-balloon and it was half empty again! So first thing this morning I called both GI and Surgery to try to get something set up to replace her gj-button. Neither called me back. So around noon I called both departments again and finally spoke to Reagan's surgeon's secretary. She had written the orders but the doctor was in surgery all morning and hadn't signed them. She called interventional radiology and asked them when they could fit Reagan in and they said they didn't have the right size tube and it would be a week or so before they could get it! They wanted to get her in on Monday for a temporary tube and then we'd have to do it all over again when the right tube came in! I was furious! First of all, what if Reagan had pulled it out?!?!? Then what? She just wouldn't be able to eat? Why on earth can't a major Children's hospital get this tube more quickly...it just didn't make sense. Anyway long story short, after I made a big stink about it they managed to track down a tube and they'll replace it on Friday. I also spoke to our home health agency and they are going to order two to keep on hand as back-ups. On a good note...finally Reagan pooped today! Not on her own accord or with the help of fruit-eze, but with the help of Fletcher's Laxative (with senna). One of her GI docs had recommended it to me in the past because although Miralax helped with the consistency of the bowel movements, it never helped with the frequency. Since discontinuing the Miralax on Saturday and adding the fruit-eze, today was 5 days without any "movements". So I went out and bought the rootbeer flavored concoction and literally 30min later we had our first of two big dirty diapers (and I might add a much better consistency than the liquidy miralax poops). Sorry to be so graphic, but you parents dealing with the same issues know how difficult this can be. I would highly recommend Fletcher's and only wish we had tried it sooner. **Trying out a new blog background...let me know what you think! The orange is a little bright, I may change it again!**


Tuesday, May 18, 2010

Sleep interupted

So as it would figure, the second I talk about Reagan sleeping better, she's up all night! Isn't that how it goes? That's why you try to avoid mentioning these things!! It wasn't as bad as it could have been...at least she was happy to just lay in her bed...but she was WIDE awake most of the night. I kept waking up to look at the monitor and there she was moving about. It wasn't until 6ish that I looked at the monitor and finally saw her sleeping. Not sure when she dozed off. She did sleep in this morning til about 10:30am. At least she got a few hours solid sleep! She woke up a little weepy eyed. She'd smile, then frown and be about to cry. We'd divert her attention with a sound and she'd smile again and then the big lip and all tears again. This went on and on. Then finally she just snapped out of it and was as happy as can be the rest of the day. I think it was probably gas related (we're still waiting on a poop). She's been a doll all day. Super smiley and giggly. She had both vision therapy and PT this afternoon and she was very interactive and alert. She did 45min in her stander without so much as a peep. For getting so little sleep last night, she sure has been in a great mood today. The only issue we've had is that she's been super gurgly/spitty. Dripping like a faucet and not managing it well at all. It's like she forgets to swallow! It's strange how this kind of comes and goes. Sometimes she is completely spit free and other times you can't wipe her mouth often enough. Doesn't really make sense...but this girl never follows the rules.


This is how we find Reagan in the morning, no covers with bent frog legs at the end of the crib!

Monday, May 17, 2010

Even sweet girls cry

Last night was another good one in the sleep department. It's really strange, Reagan went from not sleeping at all to sleeping through the night like a pro (without the help of meds). Definitely an answer to prayers! We were seriously about to go crazy with the lack of sleep last week! At least now we do have a back up medication to try next time around. Our neurologist spoke to the docs in the sleep clinic and they recommended something called trazodone...which is interesting because several parents had already recommended the same med to me! It's funny how parents always seem to know best! Of course we haven't tried this med yet, but at least we have an option if we should need it. Reagan had both OT and Feeding therapy today. She started off in a good mood for OT although she was a little sleepy. Then about 15min into Feeding therapy we saw a sudden change of temperament and the tears started flowing. I think it was tummy pains because she was having some gas at the same time. Either way...therapy was over. It's hard to do feeding therapy with a crying kid! So we left and Reagan cried the whole way home but settled down soon after we got home and was great for the rest of the day. I noticed at therapy that her gj-button was leaking a little so I checked the balloon (that holds the button in place) when we got home and it was half empty! I don't know if it's wearing out and leaking or if it was just a fluke. I guess I'm going to have to keep an eye on it...a new gj-button may be in our future (which is no small feat, it has to be changed out at the hospital by the interventional radiology team). So far still no poop since starting the fruit-eze...but Reagan would go days without going even on Miralax. Today we doubled the fruit-eze, so hopefully we'll see some "movement" soon! I just don't want her to be in pain. I love my sweet girl! (See pic below...finally we have our internet working again!)

Sunday, May 16, 2010

Squirmy

Sorry, still no pictures. Our internet, phone, and cable are still out. Reagan slept well again last night and woke up a complete sweetheart this morning. So cuddly and so precious...I love it when she's like this! I'm hoping the good mood will hold out til tomorrow so we can get her to her first OT session in weeks. I really hate it when she has to miss OT because she only gets it once a week and her OT is so good! Lately she's been getting sick on the weekends and not recovering til mid week, so she's been missing quite a few therapies. She's really been moving a lot lately, squirming around and bending at the waist like she wants to sit up. In the mornings when we go to get her she's usually all scrunched up at the bottom of her crib...she has a wedge under her mattress so she's on a slight incline and with all the squirming she works her way down it. I think it's probably time to upgrade to a bigger bed (Caleigh's mom inspired me). And even though I've already found the bedding, a new bed and mattress is quite the financial commitment. We'll see. Please continue to keep Reagan in your prayers...that she stays healthy and has a good week this week!!

Saturday, May 15, 2010

Stop Miralax, start Fruit-eze

Last night was another glorious night of sleep (thank you God)!! Reagan woke in a good mood this morning even though she was a little nauseous. She threw up one time this morning and then again this afternoon. She was happy most of the day, that is until I left to take Grandma to the airport. I came home and Reagan was screaming bloody murder! I think she was having tummy pains but who knows (maybe she just missed Grandma)? After a few hours of crying and cat napping she finally just snapped out of it. Then she was all giggles before bedtime. Such a sweetie! We did have a little scare with Reagan's pump today (no food error)...it just kept beeping and beeping and it wouldn't run! This is quite the crisis when you have a gj-tube because you can only do continuous feeds...which is nearly impossible to do by hand! We tried it today after Reagan had gone two hours without a pump...we pushed in 1ml every 1.5min into her tube. Not fun. Thankfully the guy on call was super nice and brought out a brand new pump as quick as he could. Crisis averted. Today I stopped the Miralax and started Reagan on a more natural alternative...fruit-eze. It was a real pain trying to get it to a consistency that wouldn't clog her tube. I added water, put it in the blender, put it through a strainer twice, and the slowly pushed it through her tube. It would be much easier if we could just get her to take it by mouth but I didn't even want to attempt it today with her being so nauseous. I just hope it "works" for her! She's been on Miralax for years, I don't want her getting backed up now! Poor thing, she's got enough tummy problems as it is. Please continue to keep her in your prayers...her hands and feet were cold and clammy again today and that usually means trouble.

Friday, May 14, 2010

More sleep

Reagan slept well again last night...we may be getting a little spoiled. She slept from 10:30pm to 10am!!! It's been heaven, let me tell you. She woke in a great mood and was super alert and interactive for her teacher and speech therapist. Then she had vision therapy immediately afterward and continued to be very attentive and bright eyed. Good thing she got all of that sleep. This afternoon she took a nice little nap on my lap and enjoyed some Grandma time. Boy does this girl light up for her Grandma! Then tonight our AT&T uverse went out so we had no cable, phone, or internet (thank goodness for iphone otherwise there would be no post). I had a darling pic of Reagan I wanted to post, so you'll have to check back tomorrow for that! Please continue to keep our little recovering insomniac in your prayers...

Thursday, May 13, 2010

GI follow-up

Last night Reagan slept the whole night through...from 7:45pm to 9:30am! I would have never guessed she'd last the whole night...especially since she fell asleep so early (and all without sleep medication). She woke up this morning in a great mood and has been happy all day today. She had PT this morning and fell asleep in her stander. She was only in it about 5 min before falling asleep. Normally we'd just take her out but we thought she might be able to benefit from the stretching so we just left her in it for a while. She was out cold. She never woke up when I took her out of the stander, took her AFOs off, took her spio off, put her in her bed, and then transferred her to the car for her doctors appt. She didn't wake up til we got to TX Children's for her GI appt at 1:45pm. Her GI doc was so impressed to see how she's put weight back on since getting the gj-tube. Reagan went from 25lbs in Dec to 31lbs now! She's gained back everything she lost and she looks so healthy now. I spoke to her doctor about wanting to take her off Miralax (I've read some scary stuff recently about kids absorbing Miralax and then having neurologic side effects. We're going to try something called fruit-eze. It's all natural, made from prunes, raisins, dates, and prune juice. It's very thick and sticky stuff but you can blend it with water and put it through a g-tube. The nice thing is that it is supposed to not only help with consistency but regularity. We're also going to add a probiotic. I've heard that this can also help with constipation but I'm hoping it will help her immune system as well (especially since the amoxicillin she's been on has probably killed off a lot of the "good bacteria" in her system). Hopefully these will all be good changes for her. Please continue to keep her in your prayers...we're all hoping for another good night's sleep tonight!!!

Wednesday, May 12, 2010

Rough night, sweet girl

Reagan fell asleep last night at midnight and then woke back up at 1am! Yep, that's right, one hour of sleep...all night long! When she woke up she was very cranky but who can blame her. Finally about an hour or so later she settled down and I finally saw a glimpse of my sweet baby girl again. I sat up with her til 4am and then I tried laying her down in her bed. She was not at all sleepy and she just laid there moving around. I fell asleep and woke at 7am and she was still wide awake. I put her in our bed but the girl was just not tired in the least. I can't believe she went all night with only one hour of sleep...especially considering the complete lack of sleep she's gotten the last few days. What do we do with this girl!?!? She's been wide awake and going strong all day today. And very sweet and giggly. Back to her happy sweet self. Maybe it was the 4 dirty diapers yesterday...I can imagine that wasn't helping matters. But no sign of sleepiness today...that is until tonight. Around 7pmish she started looking groggy and by 7:45pm she was out. Finally...alseep without the help of medication. Hopefully she stays that way. I'm not holding my breath and I plan on hitting the sheets ASAP. I did speak with her neurologist again today about other possible meds we can try to get her to sleep. Obviously she wasn't responding to this dose of clonidine (1/2 pill). His suggestion was to try 3/4 of a pill tonight (but if she doesn't need it, I don't want to use it). If that didn't work he was told by the docs in the sleep clinic to try trazodone. He was a little leery about that one because he's never prescribed it before in kids Reagan's age, but I know of several kids that have successfully used it to sleep so I think it might be a good one to try if and when we need to. Please continue to keep her in your prayers, that she's finally fought off whatever it was keeping her awake and upset and that we see a lot more of our sweet happy girl from now on!

Tuesday, May 11, 2010

Sleep at last...and the results of the short EEG

Reagan FINALLY slept last night. Of course it was after another double dose of Ativan at 10:20pm but she didn't fall asleep til almost 1am! It was painful...she'd doze off in my arms and then two seconds later startle herself awake...she did this over and over and over again. I've never seen a child fight sleep so much! I definitely think it's a matter of her brain not allowing her to sleep. That's why soothing mechanisms have never helped her. If we could identify what exactly it is, that would be great, but knowing how little is known about neurology I doubt that will ever happen. Meanwhile I think we HAVE to find some sort of sedating medication than can help her to sleep when she gets like this. I'm not sure if the Ativan really did anything...it did take two double doses and it was hours later before we saw any improvement. We just need something that we can give her when she gets like this to help her rest. If she was an average child staying up like this would be alarming...but having mitochondrial disorder (which is supposed to make you tire out more quickly) this is even more alarming...and potentially harmful to her. We spoke with her neurologist about this today and he seems to think we need to give Clonidine another shot...only at a higher dose. I don't know, we just need something, anything that works! He also thinks we could try to decrease some of the meds she is on. Of course he doesn't want us to touch the Banzel but he thinks the Klonopin might be a good place to start (since she's already on such a low dose). Mike thinks that maybe all the meds she's taking are making her a little coo coo and that's part of the reason she gets like this. Who knows. No one knows and that includes the doctors. We did find out the results of Reagan's shorter EEG last Friday. She only had one head twitch the entire time (go figure) but the neurologist went back over the data and said it does not appear to be a seizure...just a movement or a twitch. Overall her EEG looks better than previous ones although there are still spike and slow waves present. We are super shocked that these are not seizures. I won't be completely at ease until we get the results back from the 23hr EEG...whenever that may be. Reagan slept til 12pm today (a whopping 11hrs) but woke up still on the wrong side of the bed. She continues to be super tense and is still crying off and on. She screamed and cried the entire time in the car...but when we got home she had a huge leaky dirty diaper...so maybe her tummy was hurting her. Who knows. You can tell she's still tired. She's got the sleepy eyes. I'm hoping she'll sleep tonight...not sure if we should try the Clonidine or not. We'll see.

Monday, May 10, 2010

NO sleep

Where to start...last night was a nightmare. Reagan did not sleep a wink the entire night! Lots of crying, lots of fussing, and this continued all day today. Talk about wearing on your nerves. I just thank God our favorite nurse showed up today and did a great job trying to console Reagan. She's definitely patient and with Reagan (and days like these) that is a very important virtue. The nurse literally spent all day trying to get Reagan to relax and fall asleep and it never happened. I spoke with her pediatrician this afternoon and told her how tense, upset, and sleepless Reagan was and she suggesting trying the Ativan again (at a double dose). So at 1:15pm we gave it to her and about an hour later she calmed down a little and stopped crying but she never fell asleep. She's EXHAUSTED but she just can't fall asleep. I don't know how much longer her little body can take this! We are desperate at this point to get her to sleep! (Any suggestions? We've already tried things like melatonin which has no effect on Reagan). She only slept a few hours total the night before and was up all day yesterday and today, I don't know how she's staying awake! I don't know if she's sick or not feeling well or if it's more neurologic in nature. She's been very up and down (although more down than up). She'll laugh hysterically and then switch to crying her breath away. Poor thing, she's just miserable. And so are we. I don't know how much more of this we can take. I can handle a lot but no sleep AND a crying, hysterical child is just too much. We need some serious prayers for Reagan. Prayers that she'll get some good solid sleep tonight and wake up tomorrow feeling like a new girl!
**Reagan has never responded to car rides or soothing baths...she is one of those children that is completely inconsolable when she's upset...we've tried everything and nothing ever seems to help!**

Sunday, May 9, 2010

Mother's Day Stress

Reagan was a handful last night. The moaning, screaming, crying continued for most of the night. Finally around 5am I just sat up with her and she fell asleep on my shoulder. I was able to transfer her to her bed without waking her up around 6am. That only lasted about an hour and a half before she woke crying again. Then we put her in our bed and she slept a little longer. Amazingly she woke in a better mood, despite the lousy night's sleep and throwing up first thing in the morning. She's been pretty good most of the day. A little bipolar at times, but loads better than yesterday. We've seen quite a few head "twitches" today...this week we should find out what they really are. I'm very nervous about that. Reagan's had a low grade fever for most of the day. She started getting fussy again tonight and then had a huge foamy throw up all over the place. Poor thing. She's still not feeling quite right. Ugh...can we please catch a break?!?! And did I mention it's midnight and she's not looking even slightly tired?!?!? So that was our mother's day...everything is a little stressful when you're going on no sleep. Unfortunately my mom didn't make it in this weekend because she was on call for her work. She's the best and I am so thankful for the relationship that we have. She loves Reagan unconditionally and is such a huge help to me! Happy mother's day to everyone...I've got to go soothe a crying baby now...

Saturday, May 8, 2010

Moany groany

Oh what a horrible day. Reagan didn't want to go to sleep last night so we put her in bed with us. There she proceeded to toss and turn, moan and groan, and keep us up all night long. This morning she woke still moany. As the day went on the moaning turned into crying...nonstop crying/moaning/whining all day long. I have NO clue what's wrong with her. None. I've given her tylenol...it doesn't seem to help in the least. She is just plain miserable. I definitely think she's fighting something off...again. She'll fall asleep for brief moments and then wake screaming. Right now she's just yelling in Mike's ear nonstop. I'm going to try giving her some Klonopin tonight to see if it will help her sleep. You never know with her, sometimes it works, sometimes not. We all really need some sleep...seriously. Please keep our little one in your prayers.

Friday, May 7, 2010

Off day

Reagan is having a bit of an off day today. I'm not sure if she's getting sick again or what. One thing I've noticed is that she tends to get like this on the weekends. Her way of ruining our weekends? Who knows. Today she's just slept a lot. She's been very groggy all day...we could hardly keep her awake. She had a short EEG today at Texas Children's. She slept for most of it and was awake toward the end just long enough to have one of her head "twitches". Hopefully that's enough to tell exactly what "they" are. Then she came home and slept some more. She finally started waking up around 7:30pm and she was cranky. Lots of movement. Not sure what happened to the calm, sweet girl we had all week. Now it's 11:30pm and she's dozing off but then keeps waking abruptly arms flailing, moaning and whining. I don't think we're in for a fun night or weekend for that matter. Please continue to keep her in your prayers!

Thursday, May 6, 2010

Back home...finally

We didn't get to bed til about 1:30am last night (this morning) and Reagan was still awake. Not sure when she fell asleep but boy did she sleep. Us, not so much. Mike shared the bed with Reagan and said she kept kneeing him in the back all night. I slept on a fold out chair that was as hard as a rock. Reagan was still out like a light when I woke up at 7am to give her her medicine. She slept til 10:30am or so and continued to be pretty groggy. We didn't know what time her MRI would be but apparently we got pushed back so we didn't head to MRI til noon. Reagan was getting sleepy again on the way there. The anesthesiologist was great. I absolutely loved her. She handles most of the mitochondrial patients (lots of anesthesia is not safe to use in kids with mito so they have to use special precautions). She saw how groggy Reagan was and decided to keep the anesthesia to a minimum and she didn't even intubate her (just gave her oxygen by mask). They didn't get started til 1pm and they finally called us back around 2:40pm. Everything went smoothly and she was sound asleep afterward. She actually wouldn't wake up...big surprise, she was already tired before the anesthesia. They decided to just let us go back up to our room, since her vitals were fine, and let her wake up there. They had orders to just let us go home, but the nurse was nervous about doing that seeing how sleepy Reagan was. We kept telling her that she just does this and that there are days she sleeps the entire day. She paged our doctor and was trying to get her to agree to release her when Reagan finally woke up. We left the hospital around 7pm...much later than we were anticipating. It's been a long day. Reagan did GREAT. She's wide awake now and still in a great mood. This girl is such a trouper. Thank you so much for your prayers and keep them coming...we've got another EEG tomorrow. It's a short one but hopefully it will get read quickly and we'll have some clue as to what's going on with these head "twitches". Pray they're not seizures. NO seizures.



I love this picture!

Wednesday, May 5, 2010

Late night post from the hospital

OK to say I'm a little furious would be an understatement. So we had this 23hr EEG at "the other hospital" because they were able to get us in quickly and I figured we would get the results sooner. Boy was I wrong. I spoke today to the epileptologist's nurse and she told me that it will be 4-6 weeks! Are you kidding me?!?!? It would NEVER, ever take that long at Texas Children's (it probably wouldn't have been more than a couple days). She said they only have one epileptologist at this hospital who has to read all of the EEGs (and it's our doctor)...but 4-6 weeks...that's ridiculous! So needless to say I was shocked. I said "so my child is supposed to just have seizures til then"? And the nurse said "well she's going to have seizures anyway". Oh no she didn't! I can NOT believe she said that! I didn't even say anything back to her, I was in complete and utter shock she had said something so cold and callous. I'm still fuming, hours later. But then we came to check in to the hospital tonight and I found something else to be mad about. We got here at 6:30pm and they didn't have our orders. So I made some calls and managed to get ahold of the person who was supposed to send the orders this morning and she straightened it out. Then they had no beds available so we waited. And waited. They wanted us to go sit in the ER...and I quickly informed them there was no chance of that. Finally, two hours later they sent us up to a room. It was another 2-3 hours until they attempted an iv. And I do mean attempted. Her nurse tried twice and then got someone from the transport team...it took him four more times before he got it. She was so good about it...never even made a peep. Just kept smiling through it all. She's been in a great mood today which was our only saving grace. Now if we can just get her to go to sleep. It's almost 1am and she's still wide awake. Please keep her in your prayers that we have a better day tomorrow and things go smoothly for once.

Tuesday, May 4, 2010

Content

Reagan has had another good day today. She's been very cuddly and sweet. She's still very groggy and sensitive to light, but the movements have settled down and she's less tense and more content. Tuesdays are busy for her with three different therapies at home but she managed to take little cat naps between them so it worked out pretty well. We did have some technical difficulties with her current stander (we had to hold it upright in order to keep it from dropping down), so I sure hope we can get the new one sooner rather than later. I still haven't heard back from anyone with the results of her EEG, not to mention no one has contacted us about her going in patient tomorrow. I guess I'm going to have to make some calls first thing in the morning to figure out what we need to do. I don't have anything together yet, so I'm hoping we don't have to go in til the afternoon. I am getting more nervous about the MRI on Thursday...well not the MRI, but the anesthesia. Please keep Reagan in your prayers that everything goes smoothly. No complications whatsoever.

Monday, May 3, 2010

Baby steps

Today things seem slightly improved....baby steps...but we'll take it. Reagan slept well last night not waking til 7:30am this morning. Too bad she woke up nauseous, throwing up almost immediately. Poor girl...not the best way to wake up. But she held her own and her mood today was certainly better than in previous days. No more crying and even the occasional laugh, although you could tell she still didn't feel quite right. She was very tired and still not wanting to open her eyes. I spoke to ophthalmology first thing this morning and they were able to work her in at 11:55am. They checked her intraocular pressure and it was 23/24, which I think is a little high, but maybe that's due to her having lens implants. Everything else looked good on her eye exam so the doc really doesn't think it's glaucoma or cataract related. Her suggestion was either neurological or possibly allergies. She gave us a script for some allergy drops to try with her. So we'll see. I know my eyes itch like crazy because of my allergies. Then we headed over to the pediatrician's office to get Reagan checked out after having such a lousy weekend. No ear infection, no strep...those would be too easy. Probably something viral...nothing we can do but wait it out. She does seem a little better today so I'm hoping the upward swing will continue. Everything is still on schedule for having the MRI on Thursday. We'll check in on Wednesday night to get her hooked up to an iv before stopping her feeds (so she never goes into a fasting state...oh the joys of the mitochondrial diagnosis). And then she'll have the MRI sometime Thursday morning. I'm hoping they'll let us go home afterward, but who knows. Definitely curious to see what this MRI shows. It's been two years since her last and from what I hear the MRI at Memorial Hermann is a stronger magnet providing higher resolution images than the one at Texas Children's. We're still waiting to hear back on the results of the 23hr EEG. The head twitches continue, so I'm extremely nervous and anxious to get these results back. Please keep it in your prayers that it's not seizures and that Reagan can beat whatever she's fighting and get back to her sweet, happy self as soon as possible.

Sunday, May 2, 2010

Tired of sick

Reagan contiues to feel pretty rotten. Last night sleep was worse than in the hospital. She woke up at 12:30am and I was up with her for an hour. Then she woke up again and ended up in our bed where she tossed and turned for a while. Less tears, more whines today. I don't know which is worse. The high pitched whine she does can really grate on your nerves. She's been very high maintenance...does not want to be put down (only sleeps when I'm holding her). She's still moving a lot and has the cold, clammy hands/feet. This morning it seemed like her throat was bothering her and she was a little hoarse. But she did have a few laughs today, so I'm hoping maybe she's about to turn a corner. Tomorrow's plan will probably involve skipping therapy for a trip in to the pediatrician's office. I also plan on calling ophthalmology to see when they can get her in to check her eyes. Not sure when we'll get the results to the EEG...I'm defintely a little nervous about it (as Reagan continues to have the head "twitches"). We have a busy week ahead of us...I just hope Reagan starts feeling better soon. Please continue to keep her in your prayers!

Saturday, May 1, 2010

Still miserable

Last night went about as well as it could have. Reagan cuddled in the bed with Daddy most of the night and I slept on the fold out chair. She woke once at 4am, I changed her diaper, and then she fell back to sleep and snoozed til 7:30ish. Reagan's mood continues to be poor at best. Lots of squirming, whining, fussing, crying her breath away, all of that coupled with less sleepiness makes for a rough day. We did catch a few more "events" while she was attached and then we were just itching to get out of there (although the lady that removed the leads went a little too quickly and now we're dealing with serious hair gunk). It's really difficult managing both the EEG leads AND the feeding tube, they were constantly getting tangled up. Now we're home and have one less cord to deal with but Reagan's still a crank. I'm not sure what's bothering her. Both my mom and Mike seem to think something is going on with her eyes. Lately it seems she's been very sensitive to light, keeping her eyes closed more often, and blinking a lot as if they are hurting her. I'm wondering if it could be glaucoma (a potential complication of cataract surgery which would require yet another surgery). I think we need to talk to ophthalmology first thing Monday morning to see what they say. It makes me nervous because her ophthalmologist never checks her interocular pressure...she says the "pen" they have is not very accurate and not the best way of measuring it. So I guess you'd say she chooses the do nothing method instead. It should be an interesting week. Hopefully we'll find out the results of the 23hr EEG, get Reagan in to ophthalmology, and to top it all off she's scheduled for an MRI on Thursday (her first in 2yrs). Hopefully she gets over whatever is bothering her and is feeling better by then. Please continue to keep her in your prayers...she needs them!