Friday, October 31, 2008

Halloweeny

Reagan slept in her own bed last night. She made it about 6hrs and then woke up at 4:40am. She was up until 6 and then slept til 8. Not too bad. I think she's past the worst of the sickness. Her fever was low if any today and other than a few intense coughing fits, she seems to be doing pretty well. She's still not eating though. But she's been sleeping more than usual (she took a super long nap this afternoon), which makes it hard to get enough formula in her. We did dress her up in her Halloween costume tonight (a lady bug). We didn't go anywhere, we just handed out candy to the handful of people that came to our house. Grandma showed up at the front door in a scream costume and nearly scared the you-know-what out of me! Finally we turned out all the lights because we got sick of Bear barking at every knock on the door (and we were running out of candy). Not much excitement here.












Thursday, October 30, 2008

A little better?

So we tried Reagan out in our bed last night. She slept elevated on a pillow between us (we did the same thing when she was an infant). She slept from 11pm-5am...it's not the 8-10hrs I've gotten used to but a few months ago we would have killed for 6hrs straight so I guess I can't complain too much. I got up with her at 5am and attempted to feed her...she only drank a couple ounces and then threw them up all over the floor. We are going to have to burn this carpet! On a good note, this is the first morning since she got sick that she didn't spike a huge fever after waking up. I'm hoping maybe she's past the worst of it. I just wish her breathing would improve. We're doing breathing treatments every 4-6 hrs but I can't tell if they really help her or not. And her eating has really plummeted. She's lucky to take in 12oz of formula a day right now. I'm afraid she's flirting with dehydration...I just pray that she'll start feeling better and begin eating (drinking) again. I'm sure it's hard to drink from a bottle when your nose is clogged up and you can only take shallow breaths. We increased her pm dose of Topomax tonight. Now she's at 15mg in the am and 30mg in the pm. Despite seeing an increase in seizures since she came down with this junk, she's still doing better than before we started her on Topomax. I'm still hopeful that this will be her medication. The one that stops these seizures for good. We're going to try putting her in her crib tonight. She's never slept in her crib (other than the occasional nap during the day). Should be interesting. It sure would be great if we could transition her into sleeping in her own bed...something we've been putting off ever since she started sleeping through the night. Please continue to keep her in your prayers!


Wednesday, October 29, 2008

A nasty little virus

Reagan is still so sick. She woke up this morning and right on cue her fever spiked back up to 103. And her breathing...well it's still horrendous. She's had quite a day today. We made it to all of our scheduled appts but just barely.We started off with the blood work. We had to hunt down our favorite lady, but we finally found her and she managed to get 3 vials from Reagan no problem. I can't even begin to tell you how thankful I am for this woman. Then we went to see the pediatrician and she tested Reagan for RSV (respiratory syncytial virus) and guess who tested positive? Yep, she has RSV. It's a nasty respiratory virus that is extremely contagious and hard to clear. As long as she's running a temp she's contagious, so we'll be spending the rest of the week holed up in the house. The pediatrician was also concerned that the inhaler we were given in the ER wasn't doing the job (because Reagan is still SO wheezy), so she gave her two breathing treatments while we were there and then sent us home with a nebulizer to use instead of the inhaler. She also gave us a oral steroid to try...she said 50% of the time it helps and 50% it doesn't...but it can't hurt. I sure hope this helps her to breathe more easily. Poor thing. Then we were running late for our appt with the orthopedic. I hate the office. It's one of those big practices where they treat you like cattle. While we were waiting, Reagan threw up all over herself and me (and their couch)!! She was so exhausted, she fell asleep and slept through the casting. Yes, we went ahead with the casting. The thing is, the Botox with the occasional use of her AFOs just wasn't cutting it. The AFOs were so uncomfortable and she couldn't wear them nearly as long as she needed to. So now she has two little pink casted legs. It's a sad sight. She has to wear them for 2 weeks at which point they'll cut them off and recast them (they said she'll probably need 2-3 castings to get the results we want). I just pray that it works, because I can't stand the idea of keeping her in these contraptions for a month and a half for nothing! It better work. And they're heavy...so heavy that her swing won't move! I guess we'll be moving her to her bed...or our bed! Ugg. We had to do it sooner or later, I guess it's going to be sooner. I hate it that we have to make this transition while she's so sick! She needs her sleep now more than ever! I just hope she's able to sleep without the constant movement. Please continue to keep her in your prayers!!

Tuesday, October 28, 2008

Under the weather

Reagan slept well again last night...I don't know how she does it being this sick! I was supposed to keep her on Tylenol round the clock, but she was sleeping so peacefully I couldn't bring myself to wake her. I did however get up every 2hrs or so and check her forehead to make sure she wasn't getting hot. She woke up around 6:45am and we put her in bed with us until 7am. I noticed her head was beginning to feel a little warm so I gave her some Tylenol. Not 15minutes later her fever had spiked to 103.5!! Luckily, it went back down almost as quickly as it came. Her seizures have been on the rise as well. I'm sure it has to do with the fact that she's sick and feverish, but it's still very upsetting. Actually my biggest concern is that she's really having a hard time breathing. She takes lots of short, rapid breaths and rarely seems to settle down into a normal breathing pattern. She's still very wheezy (even with the inhaler) and coughing a lot. She went into a coughing fit this morning and threw up all over me (which she would then repeat again tonight). I must be a good target. Tomorrow is kind of a big day...I'm having to venture out to several doctors appts with a very sick baby. First we're running by Texas Children's so they can take blood to run a few more tests for GI. Since everything else came back negative, they are going to run allergy tests to see if she has any protein allergies to the food she's eating that may be causing her abdominal discomfort. Then we're going to the pediatrician's office so she can check her out and make sure her lungs are not getting worse. And then we have a 3pm appt with an orthopedic to get Reagan's feet serial casted. The Botox didn't work as well as we had hoped, but by doing the serial casting in conjunction with the Botox it should help move things along. This is the next step into trying to get her feet flatter, which will help her in so many ways (crawling, sitting, standing, walking). I'll go into more detail about it tomorrow after I learn the details myself. If you could please just continue to keep her in your prayers...she's got a lot on her plate right now and her little body is really fighting to try to get better. Pray that she clears this infection quickly and is able to get back to having less seizures as soon as possible.

Monday, October 27, 2008

Never a dull moment

Reagan slept surprisingly well last night, waking up only a few times to cough but going back to sleep without a problem. Crisis averted, right? So I got up and prepared for our trip in to the ENT this morning to have her ears checked out. She woke up around 7:30am...I picked her up and she was on fire!!! She was SO hot! I immediately checked her temp and it was 104!!! Oh my gosh...she's never even had a temp above 100! I gave her some Tylenol and we headed straight for the ER. Thankfully my mom was set to go with us to the ENT appt, so she was a big help on the long drive in. Reagan was so miserable! She was moaning and groaning the whole way there (not to mention having lots of seizures). We sat in the ER waiting room for 15-30min and by the time they called us back her temp was down to 102.5 and you could tell she was already feeling better. They put us in a room and there we sat for a while. Reagan was exceptionally good. They ordered a chest x-ray, concerned that she might have pneumonia because of the rattling in her chest, but it came back clear. They think it's a virus, but want us to follow up with the pediatrician on Wednesday just to make sure. They gave her some puffs of an inhaler (with an interesting little mask/tube contraption) and want us to use it every 4hrs or as needed for her cough and wheezing. We're also supposed to keep her on Tylenol for the next 24hrs to make sure she doesn't spike another whopper of a fever. So that was our day. We rescheduled the ENT appt for next Monday, canceled all therapies, and just took it easy at home the rest of the day. Never a dull moment with this child. Please keep her in your prayers...she's had a rough day.


Sunday, October 26, 2008

Sicky sick

Reagan is sick again. It started with a small cough last night, she was up from 3-4:30am last night with lots of coughing and wheezing, and then this morning she woke up full blown sick. We managed to make it to church well enough, she slept through most of the service, but this afternoon has been another story. She's been super whiny...she'll start coughing and just can't seem to stop (or breathe). She's doing a lot of heavy breathing (and wheezing) as well...so much so I put a call into the pediatrician because I was so worried. She's running a fever but a low grade one (100.5), so the plan is to just take her in tomorrow morning (after her ENT appt). We just have to make it through tonight first! She can't seem to fall asleep...she'll start to dose off and then the coughing/choking returns and wakes her up! She even threw up after one of the coughing fits. Poor thing. It's going to be a long night for all of us. Please keep her in your prayers.

Saturday, October 25, 2008

Whiny days

Finally a day of rest. Although it was hard to enjoy this morning with Reagan's constant fussing and whining. I don't know what happened to our happy little girl. The tide had shifted for a while and she was having far more good days than bad...but this past week the tide has turned and she's been an absolute terror! I'm not sure what it is. It could be the addition of a new medication (although I don't think irritability is a side effect for this one) or it could be teething (she's got her upper molar coming in on the left side). And then tonight she started up with a cough...ugg, we just got over that junk. Who knows. What's funny is there seems to be a trend. She'll be fussy and irritable most of the day and then at night she mellows out a little (just in time for Daddy to get home). The Topomax does seem to be making her sleepy...at times she's super floppy and she's also taking some much longer naps than usual. It's hard to say how much improvement we've seen just yet. It's still a really low dose, but the one noticeable difference that I immediately noticed was a decrease in the clustering. Which is good because those are the ones that tend to lead to the tonic or grand-mals and we certainly don't want to see anymore of those. I just pray that we'll see a steady decrease in number every day until they are gone...for good. Wouldn't that be awesome?!?! I can hardly wait!! A day without seizures for our baby girl...we have waited so long for that day! Please Topomax...be the one!!! Please keep this in your prayers!

Friday, October 24, 2008

Sweet and sour baby

The day started out well. Reagan woke up this morning in a good mood and performed well for her early morning vision therapy. Her therapist was pretty excited...she was very visually attentive today. Then we took a trip into Houston to tour the Rise School. It seems like a neat little school (with quite a long waiting list). They are affiliated with Texas Children's and have a PT, OT, and speech therapist that work there part time as well as a full time music therapist. The people were super friendly and the kids all seemed to be having a great time. Something to think about. We came back home, Reagan took a short nap and then we headed back out for pictures. She had been great all day, I don't know if she didn't get a good enough nap or what but she woke up in the car and was NOT a happy camper. She was quite upset by the time we finally got there. The photo session was difficult to say the least. We would take a few pics, try to console her with a bottle, take some more (half of them with her screaming), try to console her and so on. I don't know, I sure hope we got at least a few good ones! (She's going to send us the pictures after she touches them up a little with photoshop.) Reagan fell asleep at the very end and we did get a couple precious ones of her sleeping! Like a little angel (how deceiving). She slept the whole way home and then another 3hrs or so after we got back. She was exhausted! Poor thing. Maybe that's why she was so cranky. She woke up in a much better mood (go figure)...super sweet and cuddly. Oh well. We can always take more pictures. I missed a call from the GI doctor during all of the chaos, but she did mention that all of Reagan's tests came back normal. So we're back to square one. What's causing the pain? Still no clue. Some people (and babies) are more sensitive to pain than others and that may be the problem. Not too sure what we can do about that. I guess I'll probably talk to the doctor on Monday about it. Meanwhile, please keep Miss Reagan in your prayers this weekend.

Thursday, October 23, 2008

Up the dose

The day started off a little rocky with Reagan very fussy again. I don't know what's going on with that. She was having such a long stretch of good days, I was hoping we were done with the fussy baby bit! She was scheduled for her first session of speech therapy this morning (or pre-speech if you will) and I was very concerned that we were going to have to cancel. She took a short nap and woke up in a much better mood. She actually had a great session...she wasn't very vocal, but she was interacting with the therapist which was good. Then she had PT in the afternoon but I had to push it back to late afternoon because she was taking a long nap (and you know how she needs those naps). I think the increase in Topomax made her a little groggy (she's now up to 15mg 2x day). She wasn't just sleepy but totally limp, which is very out of the ordinary for her. Needless to say, she was still a little floppy for PT but they managed to get some work done. I did call the Audiologist today to clear up our concerns regarding the hearing test report. She said that the pediatrician misinterpreted the report and that it is still their belief that Reagan's hearing loss is only conductive in nature (and therefore easily treatable). Thank God. They still think she needs to see an ENT, which she is Monday, so we'll see what he has to say about it all. But it is quite a relief to know that they don't think it's a sensorineural hearing loss. Still no word on any of the GI results. I'll bug them about it tomorrow. We're also going to give pictures another try tomorrow at 1pm. We really need a sweet, smiley girl for picture day...so hopefully she won't be too fuzzy because of the medication. Please continue to keep her in your prayers.

Wednesday, October 22, 2008

Long stinkin' day

Oh...today was a long day! It started off super early again with a trip in to the medical center (6:45am to be exact). Reagan woke up as I put her in the car seat and not a mile down the road she had a big spasm. I looked back at her and she had red stuff dripping down the side of her mouth. I pulled over and found out it was blood! Poor thing had bit the side of her mouth when she had the seizure. Not a good way to start the day. She cried the whole way there and when I took her out of the car I figured out why. Stinky diaper. Very stinky. We made it up to ultrasound and I changed her but the stink stuck around. The ultrasound was relatively painless. Reagan was a little whiny, but she let the tech do her job without making too much of a scene. She did seem to spend a lot of time on the kidneys...I'm not sure if that means anything or not. I guess we'll find out soon enough. Then we headed on down to the pediatrician's office. Reagan starts the screaming back up again. Well, it has been months and months since we've been to see the pediatrician (since Reagan does not go in for the regular baby check-ups/vaccinations) and they have switched offices. Only one building over, but I wasn't able to turn to get to it!! It was chaos! Reagan screaming in the back seat, me driving around like a maniac trying to find my way back to this building! You know in National Lampoon's European vacation where they get stuck in that circle and just drive around and around? I did that today. I had to navigate my way through 2 circles and kept missing my turn and had to keep going back around again. So embarrassing...and frustrating! Then somehow I ended up on the wrong street, so I tried to cut back through the Rice University campus (which borders the Texas Medical Center) and got lost on campus. Meanwhile, Reagan is still back there screaming her breath away. Finally...finally I found my way back to the building and made it up to the office. So I'm apologizing to the doctor for Reagan being so stinky (I thought I must have gotten some on her outfit or something) and guess who had another stinky diaper?!? Goodness gracious! No wonder she was screaming so much. The pediatrician checked out her ears and said that it's not an infection. She wants us to go see an Ear, Nose, and Throat doctor. Great...another specialist. She said that based on the report from the hearing test (and looking at her ear), she thinks it might be more of a neurological problem. No way. We spoke to the lady doing the test and she told us it absolutely was NOT. I don't know what to think now. Maybe it was just the way the report was written that was confusing or maybe in going back over the data she changed her mind? I don't know. I'm leaning toward contacting her myself to ask her. Anyway, we now have an appt with an ENT on Monday morning. Fun fun. So then we head back home and Reagan screams her lungs out on the way home as well. I take her out and guess who has another stinky diaper?!?! Oh my gosh! What is going on here?!? I sure hope the GI doc gets to the bottom of her tummy issues...for her to be in so much pain like that is just ridiculous! At least she did take a super long nap this afternoon...I guess she was pooped out!! She did wake up in a much better mood though. I didn't up her dose of topomax today. I knew our morning was going to be too hectic to try to add something new to the mix. So tomorrow it is. Please continue to keep her in your prayers!!


Tuesday, October 21, 2008

Whinerainer

I don't know what to do with this girl! Reagan was up at 5am this morning...only this time she wasn't a sweetie pie...she was super whiny. At 6am I laid her in bed with Mike so that I could get dressed and she fell asleep! Something about cuddling in bed with her Daddy just puts her out like a light (why don't I ever try that to begin with). Reagan and I took a little trip to the golf course this morning (at the crack of dawn). Mike was playing in a charity golf tournament for a organization I hope to get more involved with in the future. It's called Father's Joy. It's a local Christian organization that reaches out to families of children with disabilities (particularly those who are just finding out). We stopped by so I could meet the lady that started the organization. While we were there I also met the director of a school that caters to kids with disabilities called the Rise School of Houston. We're going to take a tour of the school on Friday. It's not something we're thinking of now, but down the road once Reagan's seizures are controlled or gone for good, it might be something to think about. Reagan was good while we were there, but once we got home and it was about time to head for therapy she turned it on. She was super fussy. I almost canceled her feeding therapy, but she took a short nap and I thought she'd be OK so we went for it. Bad decision. She was HORRIBLE. Screaming and crying, the way she does when she's having intense abdominal pain. We suffered through feeding therapy and we were supposed to stay for physical therapy, but I couldn't take it anymore. She was causing such a scene! We came home and thank God she finally fell asleep! Such a turkey. I don't know what it was. She has been a handful today. What I wouldn't do for a nap. And tomorrow is going to be another long one. We have her abdominal ultrasound at 8am! I'm very curious to find out the results of all of these GI tests (especially after the scene she made today). We have just GOT to get to the bottom of her tummy issues! Please keep her in your prayers.

Monday, October 20, 2008

Monday, Monday

Something was up last night...oh wait, it was Reagan (and me)!! She went to sleep no problem, but at 3:20am she decided it was time to get up! And who can be mad at a bright eyed, smiley baby...usually this sleepy parent, but not last night, she was just too cute. So I sat up with her and watched late night (or early morning) TV. Not much on, but she didn't care. Finally around 5am I put her back in the swing (with a full tummy) and she went back to sleep on her own. She hasn't done this in quite a while. I'm not sure what caused it. It could have been some tummy pains because she did have a stinky diaper shortly after I changed the wet one she woke up with. Or it could have something to do with her teething, she has another one coming up to the left of her bottom front teeth. She's going to be a little lopsided with everything popping up on the left side. She was running a low grade temp last night because of it. Gotta watch those fevers...they tend to make seizures worse and we certainly don't need that! Speaking of...I finally heard from our world traveling neurologist today. He's back, but only for a day, then he heads to Miami for another conference. Tough work. I asked him about her last EEG and in a nutshell he said not a lot has changed. So the plan is to continue with the Topomax, increasing it another 15mg on Wednesday. I do think we have seen some improvement since starting it *knock on wood * (and she's at a super low dose right now), so I'm very optimistic about seeing how she does at increased doses. Please continue to keep her in your prayers this week!!

Sunday, October 19, 2008

Wasted day

So much for our plans. Reagan woke up on the wrong side of the swing this morning and has been super cranky all day. She'll go from squealing/screaming to flat out crying in a matter of moments. I kept hoping that she'd improve in time for our photo session but she seemed to just get worse. I had no choice but to call and cancel...and I'm still very upset about it. I've been waiting a long time to get some good pics of her and I was so looking forward to this today. But it would have been a miserable experience for everyone involved had we tried to make it work (and I doubt we would've gotten one good picture). So the plan is to reschedule...maybe for sometime next week? We'll have to work something out. And maybe next time she'll cooperate (little brat). Of course she took a long 3 hr nap and woke up in a much better mood. Too late! Then to top it all off, I decide to run by and pick up Saturday's mail to get yet another rejection from our insurance for Reagan's chair!! Is that insane or what?!?! They have now rejected my appeal to the first denial saying the "Leckey Squiggles Seating System does not treat an illness or serve a medical purpose so it does not qualify as durable medical equipment". OK, so I guess a lot of kids without medical issues use these chairs?!? Of course not, it's ridiculous! So it's back to the drawing board tomorrow. I've got a long list of people I have to call to fight this one. Not to mention putting in a call to Reagan's long lost neurologist...yeah, he's probably just dying to speak to me! Should be an interesting day. Hopefully my head won't explode from frustration.
Below is a video I took of Reagan at the time we were supposed to be taking pictures. You'll get a glimpse into her dual personality. (Don't forget to pause the music at the bottom of the blog so you can hear her!)


video

Saturday, October 18, 2008

Stretch

Reagan slept well last night. She must have been still a little groggy from the sedation, because she went to sleep without a fight and then even slept in a little late this morning. The last few days we've begun to see some increased flexibility in her feet from the Botox. They are still very tight, but when you stretch them, they stretch easier and farther than before. I'm hoping that with time (and more stretching), they'll continue to get better and better. Of course I have to actually put her AFOs on to get her stretched out and tonight she fell asleep before I got around to putting them on. Sneaky little thing. We're having some pictures taken of her tomorrow. I'm very excited about it. We take photos of her daily, but we haven't had anything done professionally since she was 10 weeks old. Yes, that's right. It has been a while. We got caught up in the chaos of seizures, doctors, and therapies. And then there's the issue of her delays. How do you explain to people at these photo places that your almost 19mo can't see or sit up, much less understand directions or stand. So Reagan's physical therapist's mother does photography out of her home and said that she would love to take some pics of her. We are meeting up tomorrow after to church, so I'm really hoping that Reagan is in a good mood and cooperative so we can get some good shots. Please continue to keep her in your prayers!

Friday, October 17, 2008

Hearing test

Today was Reagan's long awaited hearing test. The test has to be administered during sleep or under sedation (they monitor the brain's response to the sound, so they need to be as still as possible). So you're supposed to put them to bed late and wake them up early so they are sleep deprived and more likely to sleep during the test...no problem. Reagan was a nut last night...super wired and alert...not at all sleepy. I don't know if it had anything to do with the Topomax or not (it's supposed to make them sleepy not the other way around). She didn't go to bed until sometime after midnight and then woke up pretty early this morning. She was in a good mood at first but she couldn't have anything to eat (in case she needed sedation) and she became more agitated as the morning wore on. We arrived early for the test and had to wait in admitting for an hour or so because they didn't have any of our information ahead of time (and this test has been scheduled for 2 months now). So irritating! Poor Reagan was not at all happy, she was hungry and sleepy and let the whole hospital know! She fell asleep right as we finally got to audiology but they woke her up as they were applying and readjusting the electrodes on her head. So then they had to sedate her and wait for that to take effect. There was a lot more involved in this test than I would have thought. The nurse is in there the whole time clicking away at the computer, taking all of the readings. It took about an hour (once asleep and hooked up) for them to administer the test, but we did get the results right away. The hearing in her left ear is perfect...completely normal (so nice to hear something is normal). The right ear has mild to moderate conductive hearing loss. Which means something is blocking the sound, it's being transmitted but she doesn't hear it until it's louder. The nurse looked in her ear and said that she does have a lot of wax in that ear, so it could be pressing up against her eardrum and blocking the sound (or it could be an ear infection causing fluid buildup). Either way, it's still normal and once cleared out her hearing should be a OK. We're going to have the pediatrician check it out next week. Finally, some good news. That sedative really knocked her out, she slept for the whole test and a lot of the afternoon. Today has been a much better day than yesterday, but then again, she's slept through half of it. That doesn't bode well for us tonight. Please continue to keep her in your prayers. Come on Topomax!

Thursday, October 16, 2008

Let the Topomax begin...

OK...so I had a meltdown today. Not even a small one really. It all started out with lots of seizures this morning. Then Reagan had a great big tonic at 11am. She lost her bowels and bit her tongue. That was it. I couldn't wait any longer, I called up to the office to leave a message for her doctor even though I knew he wasn't supposed to be back until tomorrow. Well, his secretary informs me that he's not expected back until Monday!!! I flipped. His nurse told me he was supposed to be back Monday, then she said Friday, now it's Monday?!?!? I started bawling, telling her I couldn't believe he just up and left us for 2 weeks without so much as a word! She said she understood my frustration and that she would have someone call me. I don't want someone to call me...I want HER doctor to call me!!! Anyway, the nurse practitioner called back this afternoon and reviewed Reagan's neurologist's notes and confirmed that he had wanted to try Topomax next. She called in the prescription so we could get her started on it ASAP and we gave her the first dose tonight. Thank God we're doing something new because then she had a grand-mal tonight. Just one 15mg pill of Topomax sprinkles to start off. We have to open the capsule and give it to her mixed in with some baby food. One pill is no problem, but as you continue to increase the dose, the amount of sprinkles continues to increase as well. I'm guessing we'll probably increase it to two pills a day when her doctor gets back on Monday. As always, they start out at a low dose and slowly wean them into it. Please pray that this medicine is the one for her. This sweet girl deserves some seizure free days!

Wednesday, October 15, 2008

Better

Today was a better day for Reagan. She was in a great mood all day today...quite the change from yesterday. Her super early eye appt went well. The doctor said her eyes look good. The left one is healing nicely and is very clear now that the cataract is gone. The right one, while slightly cloudy, does still have a good red reflex which means it shouldn't be affecting her vision at this time. She dilated her eyes and it seems her glasses are already the exact prescription they need to be. So there's no excuse, it's time to put the glasses back on again. After the eye appt we went back for a second try at the blood draw (for the GI tests). Our favorite lady was there and took Reagan's blood without so much as a peep. That's why we keep going back for her! She's amazing. Then this afternoon Reagan had a great therapy session. She tends to give her OT a hard time but today she was an absolute angel. I guess she's trying to make up for yesterday. Poor thing, she's still having SO many seizures. She's having a lot of the intense clustered ones. And her lips do this little quiver thing afterward. I can't stand watching her have this many seizures. It's painful. I am so irritated about her doctor just up and leaving like he did. I just PRAY that he's back by Friday and we're able to get her on something new sooner rather than later. Please keep this in your prayers...this baby needs some relief.


Bear in his favorite position...hanging over the side of the sofa (only this time Reagan happened to be waiting below for him).

Tuesday, October 14, 2008

Got Patience?

If today was a test of my patience, I probably failed. Reagan was a turkey today to say the very least. I guess it's appropriate that she would have extreme abdominal pain the day of her GI appt. Just in case they think I'm kidding, they saw it first hand. Reagan woke up from her nap just in time for the car ride to the medical center and she seemed fine except for the fact that she was having a lot of seizures (since she had just woken up). She didn't get irritable until we were almost there, but we thought she was just getting sick of being in the carseat (and the seizures). We signed in and only waited minutes in the waiting room before they called us back. I thought that was a good sign. They weighed her and then when they were trying to take her blood pressure (I say try because they never got it) and she kicked it into high gear with the inconsolable crying. We are talking nonstop screaming and crying like a maniac. I don't know if the crying was scaring them or what but we waited another hour in that room until we finally saw a doctor. She was nice, I guess. She asked lots of questions. Although I admit I had a hard time even hearing her because of the crying. She wants to get an abdominal ultrasound done (thank you), so we're supposed to call and set that up for sometime soon hopefully. She also wants to check blood, urine, and stool for anything that might give us a clue as to what is giving Reagan so much pain. We attempted to do that today but Reagan was just too crazy and the wait was too long, so we finally just gave up and we are going to have to go back for that. We left and headed home, yet the crying continued. She cried for almost 6 hours straight. You would think she'd get tired!?!? I gave her tylenol, mylecon, and finally a double dose of Klonopin. It took about 45min or so, but finally she was able to settle down and fall asleep. I don't know if it was the Klonopin or if she was just exhausted. I was just glad she stopped. And when she woke up she was feeling better. I don't know. I sure hope these tests (when we finally get them done) reveal something, so we can get her on the road to feeling much better. Just as I hope her neuro comes up with a good plan for a change in medication to help give her some relief from these stinking seizures! For now it's time for bed. We've got a super early 7:45am appt with the ophthalmologist tomorrow morning! Good night!

Monday, October 13, 2008

A change of life

I had a revelation of sorts this weekend. I'm not really sure what sparked it, but I think it's something that I've needed to "get" for sometime now. Before Reagan, Mike and I had a totally normal carefree life. We had a nice house/cars, a good dog, we took awesome vacations, what more could we want? A child. Enter Reagan to the picture. Things were not easy with her in the beginning. She was healthy, yes, but she did not sleep and was very colicky. But everyone said, she'll grow out of it, it's only temporary. You just have to make it through the first few months. Well, they were wrong. It didn't get better. At 5 months we learned that she had what they refer to as a catastrophic form of epilepsy. Still we held out hope. She would be one of the lucky ones. All of the tests were negative, they never found a cause for any of it, she would beat it and we could move on with our lives. But that's just it. That's what has all of a sudden become clear to me. God does NOT want us to move on with our lives. He does not want us to just carry on like nothing ever happened. This has happened to us for a reason. We have seen first hand what it means to have a sick/disabled child, the stress it puts on a family emotionally and financially. Regardless of Reagan's long term prognosis, whether she outgrows this tomorrow or battles it for the rest of her life, this is a life changing event. And I think our lives should be a testimony to that. I have no idea what that entails but I trust that it will become clear over time. Now, that being said, I would ask that you would please keep Reagan in your prayers. She has been having a tough day today seizurewise. Lots of the intense ones and a tonic tonight as well. I found out that her doctor is still out of the country and won't be back until Thursday or Friday. We're essentially in a holding pattern until he gets back, looks at her EEG, and makes a decision on which medication to add to the mix. I just hope these nasty seizures ease up a bit in the meantime. Despite it all, she has been smiley and in a good mood most of the day. Such a sweet girl! Who wouldn't love this baby?!?!





Sunday, October 12, 2008

Taking it easy

Today has been a nice relaxing day. Reagan slept well last night and has taken a couple good naps today, the last of which I followed suit. Nothing exciting to report. No more teeth. Seizures have been about the same...not great. I'm looking forward to talking to her doctor this week and coming up with a new plan of action for her. She needs some relief from these things and I feel like we're just dragging our feet (or the doctor is anyway)! This week is going to be quite busy with doctors appts. Tuesday is the long awaited GI appt. I need to make a list of things to discuss with the doctor so I don't forget anything. Wednesday is the 3wk followup for her cataract surgery, they have to dilate her eyes so it's going to be a long one! And then Friday is the hearing test that we had to reschedule from when she was sick. Then add 1-2 therapy sessions each day and that makes for a very full week. Never a dull moment. Please keep her in your prayers this week!!

Saturday, October 11, 2008

New tooth

This will give you an idea of how well Reagan's been sleeping lately. She fell asleep early last night and then woke up at 10:30pm ready to go. We were just winding down and about to go to bed, but I reluctantly stayed up with her. There was no choice, she was wide awake! Finally sometime after midnight I decided to just try her in the swing and luckily she drifted off on her own. She woke up at 7:30am this morning and I have been so tired all day. I guess I've gotten used to going to bed at 10-10:30 and waking up at 8. It's funny how quickly you get spoiled. Only a few months ago we were up every few hours all night, every night! I don't miss that! Reagan has been in a great mood most of today. Full of smiles. Still lots of seizures. I'm just praying her doctor will pick a medicine that will STOP these darn things. Enough already. Tonight I was rubbing on Reagan's gums and found a new tooth. The tip of it has already broken through! Her left bottom molar. One of the chewing teeth (only one mind you). That will be fun, maybe she'll finally figure out how to chew on things! I wonder if that could be partially responsible for the increase in seizures? You just never know. Always a guessing game. I'm sick of guessing.

Friday, October 10, 2008

It's Friday

Today has been a laid back day of sorts. Reagan only had one therapy today (and no doctors appts thank goodness). Vision therapy was 8:30am this morning, at least her therapist comes to our house so we don't have to pack up everything and leave that early. She had another good session today. The only problem with such an early session is that she was only up for 30min beforehand and that means lots of seizures. Poor thing. It seems like the more she tries to think and concentrate on something, the harder they hit her. But she's been a trooper. Seizures and all, she's been in a great mood all day. She did take a good long nap this afternoon. I'm still not seeing much from the Botox yet. Ankles are still very tight. I did put her AFOs on her two different times today, only for 30min at a time, but they still turned her feet bright red. I'm going to try to be vigilant about putting them on her every day now. I really want her to benefit from the Botox...hopefully it will start doing it's part as well. Reagan only had two wet diapers today. I'm not sure what if any significance that has, it's just worrisome because several days ago she went all day with only one. Hopefully it's nothing. Please continue to keep her in your prayers. Here's to a restful, uneventful weekend!!

Thursday, October 9, 2008

Long day (and EEG)

Reagan was a little whiny this morning. Turns out whiny is good for stepping because she did a good job again in the walker this morning during PT. Her therapist thinks she noticed the slightest improvement in her feet (from the Botox), but hopefully they will continue to loosen up over time and with stretching. We took her in for a painfully long EEG this afternoon. I don't know if it was the lady doing the EEG or what, but this was the longest EEG she's ever had. Reagan was very fussy beforehand (tummy related) but then settled down and drank her bottle once the EEG got underway. She wasn't having a lot of seizures only a 2-3 individual ones in the beginning. It took her forever to finally fall asleep (they need her sleeping for part of it), even though she was exhausted and had only had a 20min nap all day. After we woke her up she did have a couple of the more clustered ones, at least they have them on record so they can see first hand what she's been doing lately. Then the screaming started back up (including one breath holding episode) culminating with yet another stinky diaper. She cried all the way home and finally took a good nap and woke up in a better mood. She's been quite good tonight although she did have a small tonic seizure right after her bath. I really hate those. Her arms stiffen up and her whole face just freezes in place. Yuck. I really hope this new EEG gives her doctor some sort of insight into where to go next. It's always such a guessing game. He's still out of the country but he's supposed to be back momentarily next week before he takes off again. Hopefully he'll take the time to review her EEG and contact us then. Meanwhile, please keep Reagan in your prayers and pray for guidance for her doctor to enable him to choose a medication that will actually work for her.

Wednesday, October 8, 2008

Botoxed

Well today was the big Botox day. Everything went well. Reagan got 3 shots in each calf but barely noticed them because they used some sort of cold ice spray to numb her up beforehand. She started crying at the last one but calmed down fairly quickly and slept the whole way home. I haven't noticed a difference yet but the doctor said it could take anywhere from hours to 2 weeks to take full effect. And you have to continue to look for any negative side effects that whole time as well. Most likely would be a low grade fever or achy flu-like symptoms. The worst of which would be numbing of her throat interferring with her swallowing (which can lead to aspiration pnemonia and death). So we just have to watch her closely. I just hope it works as intended. Some kids don't respond to it at all. Reagan really needs those calves/feet to loosen up. It's very obvious in the video, the way she tries to walk on the top of her feet. It must be hard to pull them all the way through when they are so pointed. Hopefully, the Botox will help her in that area. Please keep that in your prayers. She was a little irritable when we got home, but she took a nap and woke up in the best mood ever!! Her vision teacher was blown away at how smiley and happy she was. She would spin this little black and white wheel on Reagan's light box and Reagan would reach out and stop it and then smile that toothy smile! She did it over and over again, it was too cute. She's certainly been a trooper today. Even smiling through the seizures (breaks my heart). Her EEG is tomorrow at 1pm. Please keep her in your prayers!

Tuesday, October 7, 2008

Baby steps

I did get some things sorted out today, slowly but surely we'll make some progress. I spoke to my favorite neuro nurse (yeah right) and she said that our doctor is in Italy...must be nice! But he will be back for a day or so early next week before he heads out again. So the plan is to have an EEG this Thursday that way he'll be able to look it over before deciding what to do next. Her seizures have been about the same today, where she'll have several right on top of each other that leave her kind of stunned. I really don't like that. She hasn't had those in a while. Even her PT commented about it today. Tomorrow Reagan's getting Botox!!! I'm a little nervous, but really excited. There is always a risk of complications, but from what I understand they are very rare (and she's using a low dose). Her little calves are just SO tight it's nearly impossible to get her feet flat (and makes it very uncomfortable for her to wear her AFOs). This should help that a lot. It should also help her with her stepping when she's in the walker. I took some more video today (I will try to add it to this post tomorrow). She was quite whiny but she did a good job of stepping with her right foot...usually she favors her left which is strange because she uses her right arm much better than her left. I think that's the next piece of equipment we're going to try to get. I sent out my appeal to the insurance company for her seating system so hopefully they'll speed that along and not sit on it for months...we really need that chair! Botox is at 9am tomorrow morning, please keep her in your prayers!



video

I promise (when I get time) to go back and edit this to make it shorter and easier to watch...but for now this is the long, shaky version.

Monday, October 6, 2008

Where in the world is Dr. R?

Reagan slept well again last night (thank God for her sleeping) but then woke up fussy again this morning. We almost skipped OT today because of it, but I'm glad we went because she cheered right up once we got there. Her OT taped her hands with kinesio tape (the tape that adorned the bodies of many beach volleyball players during the Olympics) in an attempt to get her to stop clenching her hands into fists. They leave it on for a few days at a time (or until it starts peeling away). She's tried this once before and it didn't seem to help, but she wanted to try it again since she seems to be opening her hands up more lately. We'll see if it works. Reagan was actually in a better mood this afternoon, but she was having a lot of seizures. The kind that would come 3-4 at a time and really rack her entire body. They started up right after she woke from a nap and were painfully persistent for a few hours. I actually found out today that her neurologist is out of the country for the next couple weeks! I was furious!! We were supposed to get her in a for an EEG and discuss adding a new medication in the next week or so! How are we supposed to do that with him MIA? I'm very upset about this. I called today and left a message for him... hopefully he's checking them and I'll hear back from him relatively soon. I certainly can't stand idly by while she has this many seizures. I won't. Please keep her in your prayers this week!

Sunday, October 5, 2008

Lots of crying

Reagan slept well last night and woke up this morning with a super wet diaper (if you're wondering why I care, see yesterdays post). She has had her fair share of wet diapers today so I think she's OK in that department. But she woke up cranky this morning and has been super whiny all day. Then this afternoon she kicked it into full gear with the inconsolable crying. So much so Mike decided to forgo his weekend golf game and stayed home to help. Thank goodness because she was enough to drive anyone crazy (me I'm already there). I'm fairly certain it was tummy related again. So frustrating! We just HAVE to figure that out. There is no reason she should be in that kind of pain! Her appt with the new GI doctor isn't for another week. I also think she's having reflux (the silent kind), she'll cough after she drinks her bottle like she's choking on something. It seems like it has picked up since we took her off the diet. I started her on some prevacid yesterday to see if it helps. She was on it once before and we didn't really see a difference, but I thought we'd try it out until we get her in to the GI doc. Today has been a tough day (even before all the crying). I have just been very down. Sad really. Sad for Reagan. For everything she has to go through, day in and day out. The seizures, the endless doctors appts and tests, the pain. It's no life for an 18 month old. And that makes me very sad. Please continue to keep her in your prayers.

Saturday, October 4, 2008

Worry

I've cooled down a lot after a good night's sleep (and a nap today). All of this stress combined with being sick...it's just not a good combination. I'm still not feeling great. I never went in to get antibiotics and it seems like this stuff is just hanging on. I've had a low grade fever for days that just won't seem to go away! Reagan sounds a little better, a little less coughing (although still stuffy), but she has been taking some long naps the last couple days which I would guess she's doing because she just doesn't feel well and is wiped out. She's on Day 6 of antibiotics, so you would think it would already be clearing up!?!? I am a little concerned about something else though. I think she's only had one wet diaper all day today. She hasn't been drinking any less than usual and she doesn't have any signs of dehydration. She's just on so many different medicines...could they be interfering with the function of her kidneys? The more I think about it, the more concerned I get. I sure hope it's nothing. We've got enough on our plate as it is. Please keep her in your prayers!

Friday, October 3, 2008

Oh I'm stressed...

Today has been a stressful day. Why is it that nothing is ever easy? Nothing! I'm so stressed about these darn seizures! Reagan's been having a lot of them. It just seems like it's never going to get better. We've been battling this for over a year now and it has just gotten worse and worse! Then to top things off, I get a letter in the mail today from our insurance denying coverage of her seating system!!! I never in a hundred years thought we'd have a problem getting this accepted! It's basically a pediatric wheelchair...they always cover those! Not our insurance! And what's crazy is they are completely and totally wrong!! The wording from our policy that they site as proof that it's not covered is incorrect! This seating system fits under all of the criteria of the policy! I'm just so irritated by this! They are just trying to weasel their way out of paying for it, hoping that if they reject it we'll just give up. And it's not even like they pay for the whole thing...they have a $2500 cap which is really low. We've been trying to get this for her for months and it's been such a huge ordeal. It seems like we're never going to get it...and she needs it so badly! She's just gotten too big (heavy) to carry around all of the time. I try to hold her in my lap for vision therapy and I just can't do it. She's sliding out of my lap and off my leg, all slumped over and crooked. So now I have to write a letter and appeal their decision. Who knows how much longer this is going to drag on. I'm completely and totally furious. Why is it that nothing can ever go smoothly for us...for this precious little girl!?!? So frustrating!!!!!

Thursday, October 2, 2008

Sick of seizures

It really is unbelievable how well Reagan is sleeping now compared to just a few short months ago (knock on wood). Last night, sick and all, she slept from 8:30pm to 8am!! She really needs the sleep, poor thing, she's still so sick. I had to call and cancel her hearing test for tomorrow, they can't do it with her coughing and being so congested (it's rescheduled two weeks out). She went to PT this morning and was a good sport, but you could just tell she didn't feel good. We'll have to get better video of her in the walker another day. Seizures were pretty nasty today. No big ones, but a lot of the stronger ones one on top of another. It's so frustrating. I just want some relief for her. I don't know if they are worse because she's sick or what. I hope so. I hope they will taper off as she begins to get better. Please get better. Please keep her in your prayers. And please keep little Jackson and his family in your prayers as he undergoes the most important day of his brain surgery tomorrow, the resection (removal of the part of his brain causing the seizures). Such a scary process, but definitely worth it, giving him the best chance at a full recovery without seizures! Please keep them in your prayers!

Wednesday, October 1, 2008

Get well soon

Reagan slept well again last night, but woke up this morning a little cranky. She was having a lot of seizures, so I can't really blame her for being fussy. She is still so sneezy and congested (and a little wheezy). I just wish she could kick whatever this is in the butt...come on antibiotic! My throat was a little sore this morning and I was running a fever this afternoon, but I don't feel all that bad. Although she still manages to squeeze out a smile here and there, you can just tell Reagan feels lousy. I almost didn't take her to OT this afternoon but last minute I decided to chance it and she did surprisingly well. I felt bad because she had not been to OT in over a month (since before the HBOT). Her therapist did notice some improvements in her trunk control as well as increased movement of her arms. It's still so hard to say how much the HBOT helped her. I think I began seeing some slight improvements in the last week we were there...I almost wish we had done an additional week or two to see if the differences would have been even more obvious. I don't think 20 sessions is really enough to see huge improvements (and we only did 19). Oh well. Maybe at some point we'll do more. I guess you never really feel like you do enough for your child. Please continue to keep her in your prayers.