Saturday, May 31, 2008

Crawfish

Reagan actually did much better in the car than we anticipated. She got a little fussy a couple times, but we worked through it and made it to MawMaw and PawPaw's alive. She was actually in a great mood when we arrived last night and had relatively few seizures (although she had a lot on the drive over). We brought her swing with us, so she slept pretty much the same as she's been doing at home. She woke up often, but we just gave her a few sips of "juice" and she went back to sleep fairly quickly. Today she's been pretty fussy but what's new. We had crawfish for dinner and we got a few pics of her first encounter with a crawfish. (In the first pic she's not a happy camper...but you can get a good look at those two front teeth!) She is 3/4 Cajun so I guess she better get used to crawfish because I'm sure some day she'll be eating them alongside the rest of her relatives!








Friday, May 30, 2008

On the road

Reagan woke up a lot last night but each time she went back to sleep fairly quickly and we didn't actually pick her up until 6am. She's still having a lot of seizures. I was expecting to hear from the dietitian yesterday and talk with her about what's going on but she never called. Instead, the nurse practitioner (who's in charge of the diet at TX Children's) called us today and she agreed that the diet may need to be tweaked a little for Reagan. She said that some kids become too ketotic (which you would think would be a good thing) but for some reason it causes these kids to have more seizures instead of less, however by changing up the ratio of the diet they may show improvement. This is a possible explanation as to why for a few days early on we did see a decrease in her seizures. They don't want to make too many changes too quickly...so the plan is to take her in the week of the 9th to have her blood levels checked and then adjust the ratio accordingly. Mike also asked her about the MRI results and she said that both she and the neurologist looked at the actual MRI and agreed that the wording of the MRI report was too harsh. That there might be a slight increase in the space between the brain and skull...but nothing substantial and nothing they seem too worried about. Wow...what a relief. I'm still curious to see what the other neurologist has to say about it, but I am definitely thanking God for this bit of good news.

Reagan doesn't have any therapies on Fridays so today I've just been trying to get things together for our trip this weekend. We're going to visit Mike's parents that live ~3.5hrs away near the Texas/Louisiana border. I'm the designated packer in the family, which probably isn't the best thing because I am also a chronic over packer! The plan is to leave this afternoon and come back sometime Monday. We really haven't left the house (except to go to the hospital) since before Reagan started on the ACTH treatment. It's going to be interesting to see how she does with the car ride. It's always a gamble. Sometimes she sleeps most of the way and other times she cries most of the way. On a good note...she hasn't had a breath holding episode for almost a week now (knock on wood), so that's one less thing to worry about. Please keep us in your prayers for a safe (and soundless) trip.

Thursday, May 29, 2008

Just what I needed...

Have you seen the Saturday Night Live skit about Debbie Downer? Mike and I joke that that's what we've become to our friends and family...Debbie Downer. Wa...wa... Especially after yesterday's post. I think sometimes people are afraid to ask how we're doing because they already know the answer. Our family (and extended family) has been great, often times going above and beyond the call of duty, offering unending support and prayers through these difficult times. For some of our friends I think it's too much for them to handle. They keep their distance and their silence. But others (even those living far away) go out of their way to offer us support and for that we are truly thankful. We know a lot of people stay up to date by reading the blog (which is great and the reason I started it)...but sometimes it's nice to get something as small as a phone call or email (or even a comment on the blog) just to let us know we're not alone and give us that extra little boost. Most surprising to me in all of this are the complete strangers (most of which we've only met online) bonded by similar life altering circumstances that have reached out to us to offer their advice, support, and prayers...we're so thankful for each and every one of you.

It's funny how a day can be going along so badly and then one little thing can turn it all around for you. Reagan has been fussy all day today...having LOTS of seizures and just all around whiny. I almost didn't even take her to her physical therapy appt this afternoon but I decided why not? She can whine here or whine there. I took her and she cried in the car the whole way there. But once we were there and the session started she did GREAT. Her therapist was SO impressed. She was making eye contact, she was tolerating her stretching no problem, she was even showing some really good technique in trying to get her to roll. And there it is. I've been down in the dumps all day long with a crying baby but one good therapy session and I'm flying high. Thank you God...I needed that.


Sleeping like a rock in her crib!

Wednesday, May 28, 2008

When it rains it pours

I hate being the bearer of bad news. I was tempted to not even say anything but we need all the prayers we can get so here it goes. I got a call today from Reagan's pediatrician. She just (finally) received a copy of Reagan's MRI report. While Reagan was in the hospital starting the Ketogenic diet we asked the pediatrician on call for a copy of it, so we've actually had the results but had never discussed them with any of her doctors. Her neurologist never even mentioned anything to us about the results and we were so preoccupied with the diet, we kept forgetting to ask his opinion on it (in the few short moments we saw him each day). But we did read it ourselves and the results didn't look great to the untrained eye. The pediatrician confirmed that today when I spoke with her. Basically...Reagan's brain isn't growing as it should. As the brain grows it typically pushes on the skull causing it to expand, this results in an increase in head circumference. Reagan's head circumference is small for her age (the medical term is microcephaly...which we were already aware of) but the MRI showed that there is extra space between her brain and her skull that shouldn't be there. So not only is her head small, but her brain inside is even smaller. As to what this all means...no one can really say. All I know is it's not good. The brain, the seizures, the eye problems...they are all interrelated. If we can help one, we may be able to help all. That's why we are striving so hard to find something to stop her seizures. This next year is a very crucial time for Reagan because it's in the first 2 years that the brain experiences the most change/growth. Her pediatrician mentioned that they may want to do another MRI relatively soon (3-6months) to see if there's been any change. As for now...we'll just take it one day at a time and continue to pray. Please keep her in your prayers. We need a miracle here...but miracles do happen...

Tuesday, May 27, 2008

Fussy butt

After a rough night last night (for all of us)...Reagan has been such a fussy butt today. This morning she went in for her first OT appt post-ACTH. There was a lot of crying involved...but luckily no breath holding. We really need to work in stretching her out because her muscles have tightened up a lot in the few months she couldn't go to therapy. I'm trying to get a regular schedule set back up for her therapies. Once everything is set up we'll have quite the busy schedule between therapy appts and doctors appts. The rest of the day was pretty uneventful. A lot of seizures and a lot of whining. I'm not sure why she's been so fussy today, but I've got a HUGE headache because of it. I'm hoping for a better day tomorrow...for everyone.

Monday, May 26, 2008

Frustration

The trend continues...Reagan is waking up like clockwork every night at 2am, 4am, & 6am (at the very least). She wakes up with a bunch of seizures and as those finally taper off she is able to go back to sleep. It's so frustrating. It's almost like she took one step forward to take two backward. After starting the diet her seizures showed improvement for a couple nights and her sleep drastically improved for a week...but now her seizures are all too frequent and her sleep seems to be suffering as a result. We just don't know what to think. We wanted this diet to work so badly! I know it's still early and maybe it just takes time...but deep down I can't help but thinking if it were going to work, it would have already. Or maybe it did (a little anyway). Maybe it is something as simple as tweaking the diet and maybe she just needs to be on a different ratio (like 3:1 instead of 4:1), I don't know. But through it all Reagan remains such a trouper. Smiling, babbling, and laughing...her happiness in spite of all of this is what keeps us going. We have to stand in faith that God has bigger, better plans for her than this. We have to just keep hoping and praying that something is going to work for Reagan...something is going to stop these seizures that have negatively affected every aspect of her life...our lives. Please, please, please keep her in your prayers.

Sunday, May 25, 2008

Sunday

Reagan has been quite a handful today. She had a lot of seizures and was very whiny and fussy most of the day. She just didn't seem to be feeling very well...I know the seizures take a lot out of her. She didn't sleep very well last night and then she only took a couple short cat naps today so I'm sure that only added to her grumpy attitude. But then tonight she's had a total change of character...she's been happy and talkative again (like the video from yesterday). She was cracking us up! I love it when she's like that. I think it's God's way of giving us a break from all of this. And we greatly appreciate it.

Saturday, May 24, 2008

Chatty girl (video)

As expected, we were up a lot again last night. Poor girl, she's waking up and having so many seizures, I don't know how she could possibly go back to sleep! She continues to have a lot of them throughout the day...she usually has more in the morning than she does at night but to our dismay she's still having them all day long. I'm trying to stay hopeful about the diet working, but it is discouraging that we haven't seen a more pronounced decrease yet. On a positive note, Reagan has been exceptionally talkative and animated lately. She's quite entertaining. Below I have a video of her today talking it up! **Before playing the video make sure you turn the sound up on your computer and scroll to the bottom of the blog and pause the music so you can hear the video instead.**



video

Friday, May 23, 2008

Sleepy

I'm afraid we might be back to our old sleeping schedule (or lack there of). The sedating effects of the fatty formula seem to have all but faded away...last night we were up and down most of the night. I was really hoping that Reagan had turned over a new leaf, but the last few days have proven otherwise. It was heaven while it lasted. I guess we can take advantage of the fact that it's now the weekend and we can relax and sleep in a little. We're spending the holiday weekend at home, not very exciting, but at least we won't be stuck in the holiday traffic with a screaming baby. Reagan was in a pretty good mood today, drinking every bottle (even the morning one) without a fight (although she's been a little fussy tonight). Seizurewise, today has been kind of a mixed bag. She woke up having quite a few seizures (and couldn't go back to sleep because of them) but she's had some good periods today with very few and then some bad clusters with several strong ones all in a row. We're still hoping we'll begin to see a steady decline on the diet. Please keep her in your prayers!


Thursday, May 22, 2008

Back in glasses

OK...so today was far better than yesterday. It started out just as bad though, or worse. First of all, a pattern has established itself and it's not a good pattern. For the last 3 nights Reagan is waking up waking up in the middle of the night (usually around 4am). She's up anywhere from 30min to 1hr and then she goes back to sleep. She used to do this nearly every night (sometimes more than once) and I have so loved these last few weeks where we could just give her juice and get her to go back to sleep without ever having to pick her up. Then this morning she woke up with lots of seizures and within the first hour of waking had two separate breath holding episodes. Speaking of patterns...this is the 2nd day in a row that she's had 3 breath holding episodes a day. Keep in mind she's holding her breath until she pretty much passes out. Not fun. All of that didn't make getting her first bottle down her an easy task and for the first time since starting the diet, I let it go and she only had 2 oz of the 4 oz bottle she was supposed to drink. But surprisingly the rest of the day went fairly well. She had a good PT session this afternoon despite desperately needing a nap and tonight we took her to our Bible study and for 2 hrs straight she babbled and squealed away. She was an absolute angel. We were thrilled! On a different note...Reagan's back in glasses now. We finally got the correct lenses in her glasses...they had to order the new one, then it came in and we found out that they had ordered the cheap coke bottle thick type, so we had to get them to order it again. Now it's just a matter of getting her used to wearing them again. And then we'll begin patching a few hours a day...should be fun.

Wednesday, May 21, 2008

Down day

I don't know what it is, but today I have been really down in the dumps. It started first thing this morning with Reagan waking up to a ton of seizures and then fighting me every step of the way to drink her morning bottle. She HAS to to take in each of these bottles to meet her daily nutrition/fluid requirements and she was letting it just drip down the sides of her mouth!!!!!! So frustrating! I really have no idea how much she ended up getting. And then I got to thinking (which it's really better if I don't do)...why does it have to be so hard?!?! Why does EVERYTHING with Reagan have to be so difficult?!?! And next thing I know, I'm crying, Reagan's crying, it's a big mess. I don't like getting this way. Sometimes it's me feeling sorry for myself, but usually it's me feeling sorry for Reagan. What did she do to deserve this? What did I do to cause her to have to go through all of this? Never once during my pregnancy did I even question the fact that my child would be born healthy. Mike and I were still young, everyone in our family is healthy, no problems like this anywhere in either of our families, how could she not be healthy? And she was...or so we thought. Did I take it for granted? Of course I did...most everyone with healthy children takes it for granted. So now what. Where do we go from here? We're just hoping and praying that the Ketogenic Diet is going to do the trick for her and finally stop these seizures. Please keep this in your prayers.

Tuesday, May 20, 2008

Temper

Last night was a little unusual in that Reagan only woke up twice, but one of those times she was up for ~1hr. She used to do this every night, but she hasn't done it in quite a while. I didn't mind though, because she was in a great mood and fell back asleep without getting too fussy. She's still having a lot of seizures in the morning and early afternoon, but there does seem to be a general trend that as the day goes on she has considerably less. Interesting. Today she had two of the breath holding episodes, one early this morning first thing after waking up and one during the first 5min of her PT appt this afternoon. I really think it's just an out of control temper tantrum. In her defense, she was tired (she was due for a nap) and the therapist started stretching her and she's not a fan of stretching!! She started crying and then that was it...there was no stopping her. She stops herself right before passing out (right when you think there's no way she could turn any bluer). Her therapist was so calm, definitely more so than me, she just held her and talked calmly to her until she snapped herself out of it. I was very impressed. Afterwards Reagan was so pooped that she just let the therapist do whatever (part of the time she was half awake and the rest she was actually OUT), so she was able to get some good stretching done while she was relaxed. I guess we are all going to have to get used to these incidents, because I don't think she's going to stop anytime soon (she has quite the temper)!

Monday, May 19, 2008

Med free

We tried it today. We didn't give Reagan the am or the pm dose of clonazepam...a day without meds. And to be honest, I didn't really notice a difference. She still had quite a few seizures this morning but she had less this afternoon. I'm not sure what if anything the clonazepam is doing for her, so I guess we need to decide now whether or not we should discontinue it completely (or potentially just give it on an as needed basis). Last night was a wonderful night! Reagan went to bed around 11:15ish and didn't wake up until 3am. She was only up for a little while, I gave her some "juice" and she went back to sleep until 7:30am!!! I'm still in shock. If someone would have told me that Reagan would be sleeping this well a few weeks ago, I would never have believed them. It's quite the miracle. Now, we're waiting for another miracle. The most important one...no more seizures! I do think we're finally on the right track. Two nights without seizures is a step in the right direction, although the streak ended and she did have some tonight but only a few (I should have kept my mouth shut). I'm hoping that this is going to be a trend and that we'll just begin seeing less and less until they are gone for good.

Sunday, May 18, 2008

What to do...

Today has been a tough day for miss Reagan. She woke up in a foul mood and was having a lot of seizures. We should have known better but we still tried to go to church. Needless to say, it didn't last long. We didn't even make it to the sermon, it was non-stop crying so we turned around and came back home. She was pretty fussy all morning and on two separate occasions she held her breath until she was on the verge of passing out. Not fun for any of us. We think she's having some gastrointestinal upset. The ketogenic diet is known to cause constipation...and Reagan was prone to gas and constipation even before starting the diet...poor girl. This afternoon, however, has been a completely different story (well since around 5pm or so). I fed her a bottle and she drank it down no problem, the first time all day without a fight. Ever since she's been in a great mood and most importantly no seizures. Yes, I'm hesitant to mention it, but it's a phenomenon we observed last night as well. The only thing I can think of that we've done any differently (other than the diet of course) is that we cut out the pm dose of clonazepam yesterday and today. Do we dare cut out the morning dose as well?? I don't know. We started giving her the clonazepam after we began seeing the tonic seizures, who knows if it's helping or not, but we figured it couldn't hurt. Could it? Logic tells me that the clonazepam probably isn't causing the morning seizures...but who knows. We are just so extremely grateful for the last 2 nights and can only imagine what it will be like to have entire days free of seizures. Hopefully someday soon our dream will be a reality!! Please keep her in your prayers...

Saturday, May 17, 2008

Off schedule

While we were at the hospital they set a feeding schedule that we were supposed to follow. Reagan would get a 4oz bottle at 8am, 11am, 3pm, 7pm, & 11pm (20 oz a day). We did pretty well with it while we were there, but last night there was a bit of a screw up and now we've been a little off ever since. Reagan fell asleep last night at 10pm and we decided we would lay down and get back up an hour later to feed her. Big surprise, that didn't happen. We finally woke up at 3am with her crying...that's right she slept 5hrs in a row!!!!!! So I went ahead and just fed her the 11pm bottle at 3am (although we are supposed to just skip the feeding if she misses it). She drank most of it and was back asleep by 3:30. She woke up again at 6:30am, I picked her up and put her in bed with us and she fell back asleep in Daddy's arms until 9am (an hour late for her 1st morning feeding). This set off a domino effect, she ended up having her 11am feeding at 1pm and then her 3pm feeding at 4pm. We were finally back on schedule with her 7pm feeding, but she fell asleep while eating it (this fatty formula really makes her sleepy) and didn't drink the entire 4oz. Oh well, I guess I'll try to slip a little extra into her 11pm feeding. I knew feeding her on a schedule was going to be difficult, but I didn't really factor in that this formula was going to wipe her out they way it does. Not that I'm complaining, we are really LOVING the sleep and according the doctors this isn't going to last forever, but she does seem a little dazed and "floppier" than usual.

Friday, May 16, 2008

Bedtime

Last night we put Reagan down in the swing for bedtime and an hour or so later she was back awake. I tried to give her juice to get her back to sleep for 20+ minutes and she wasn't having it, so finally Mike picked her up and she fell asleep on his chest on the sofa. I don't know what it is about him, but she can fuss and fuss for me, then he picks her up and she's instantly asleep on his chest! After a little while, he moved her into the bed with us where she slept for the rest of the night, or at least until 6:20 or so when she decided to wake up. Today has been a pretty uneventful day...which is both good and bad I guess. I haven't noticed a difference in the general number of seizures just yet, but she also hasn't had any of the bad ones today or any of the scary breath holding spells either so that's good. It was a struggle this morning to get her to drink her first bottle...and when I say struggle I mean kicking, screaming, and slapping the bottle out of my hands! But she's taken the rest of the bottles today relatively easily, so who knows. This morning she was quite sleepy, but this afternoon she's only taken a couple very short naps, which has made for a fussy little girl tonight! Is it bedtime yet?

Thursday, May 15, 2008

Home sweet home

Finally we are back home from the hospital. Reagan's been tolerating the formula well and all of her labs looked good so they felt confident letting us leave (we were home by 12:30 today). I guess now it's time to do this on our own. I'm just glad that we're done with the finger sticks every 6hrs. They never stick the pinky or the thumb, so she had multiple sticks on all her other poor little fingers. Reagan has been a breath holder for a while, when she gets really mad and is crying up a storm she'll hold her breath (sometimes she will even turn a little purple). This used to scare us, but honestly she's been doing it so long we've gotten used to it (she's always started breathing again and has never passed out). At the hospital a couple of times when she got her finger stick she did the breath holding thing only she held it for a LONG time, it even scared us a little. I can't imagine her holding it one second longer without passing out...it was almost like she just got stuck in the cry and was trying to breathe again but just couldn't snap out of it (turned completely purple) and then finally she would breathe and then was so totally drained she fell asleep. Well, she did it again today at the house. It really scared me. I hope this isn't something she's going to do on a regular basis. If so she's going to scare the heck out of all of her therapists who were already nervous about the short term breath holding she was doing. All that being said, Reagan has really been quite good through all of this...and the extra sleep has been amazing (knock on wood). I just hope it continues now that we're home. But most importantly through all of this we are hoping to see some relief for her from these seizures, so please continue to keep her in your prayers!


Wednesday, May 14, 2008

Ketosis

Today has definitely been a better day and we thank God for that (we needed a break). Actually, it all turned around last night. I don't remember what time it was but Mike was holding Reagan and she got the giggles. He would laugh and she would laugh! Then I would laugh and she would laugh...over and over again. It was too cute. This went on for probably an hour or so. Even while we were trying to feed her, she kept cracking herself up and milk would drip out of the corner of her mouth! Then last night she slept really well, which is always a nice bonus. The high fat formula is definitely making her sleepy. She's been sleeping better at night and taking longer naps during the day (a deep sleep too, not her normal light sleeping where anything wakes her up). This isn't something we expect to affect her long term, but we're enjoying it while it lasts. She still had quite a few seizures this morning, but no big ones and definitely not as many as she had yesterday. We're pretty sure we'll be heading home tomorrow. They seem pleased that Reagan is tolerating the full strength formula so well, her glucose levels have been good, and she's been in complete ketosis all day today. We expect to be released sometime around noon tomorrow. The doctor stressed again today that it may take a few weeks before we see a difference seizurewise, so not to get discouraged if we don't see anything early on. We already knew this. We've read about some kids that respond in the first few days of ketosis and some that take a month or more to respond. We'd prefer sooner rather than later, but we'll take it when we can get it. We just want it to work for her. We'll keep everyone posted on her progress and thank you all so much for the prayers and encouragement (and keep those prayers coming)!!


Daddy took Reagan for stroll around the floor today!

Tuesday, May 13, 2008

Tough day

Last night went relatively well. Reagan took a late night nap and was up just in time for her 11pm feeding as well as her midnight finger stick and vitals. She wore herself out crying after the finger stick and fell asleep around 12:30. She slept in the swing all night, only waking briefly. They came back at 6am for another finger stick and managed to do it while she slept...she woke up, took a few sips of juice, and went back to sleep! Unfortunately the rest of today has not gone as smoothly. After having relatively few seizures yesterday (surprisingly few actually), she's more than made up for it today. This morning she had a lot of seizures (even only a few hours after taking her morning clonazepam), then she took a LONG (4hr) nap, missing Mike's parents and nephew that came to visit, and even drinking her first 100% Ketocal bottle in her sleep. Then this afternoon, about 15minutes after she awoke from her long nap, she had another scary tonic seizure (I never wanted to see one of those again). My dad had come to visit and was holding her when it happened. I feel bad for him because I know how it feels. You almost feel like it's your fault (which it obviously isn't). He handed her to me and I immediately gave her to Mike and ran out into the hall for our nurse. Several nurses then ran into the room and Reagan had stopped (although she did continue having the "aftershocks" for quite a few minutes afterwards, which was unsettling). While we HATE these seizures, we don't think it has anything to do with how well the diet is going to work for her. First of all, at this point she had only had one full strength Ketogenic bottle, so she still hasn't achieved the state of ketosis necessary for seizure improvement. Second, things like teething can not only cause an increase in seizures, but also cause kids that have been seizure free to have a breakthrough seizure...so we refuse to get discouraged about this. Everything had settled down (as much as possible anyway) and she drank down her 7pm bottle like a champ in 10minutes, but then as she was washing it all down with some juice, she choked on the juice and proceeded to throw up most of what she just ate! It's unfortunate because it's not like she threw it up because it made her sick, I think it was just a combination of eating it too fast and then choking on the juice that did it! Poor girl...she can't catch a break today. So she'll just wait and eat again at her regularly scheduled time 10-11pm tonight. We're just praying for a better (much better) day tomorrow. By tomorrow she should finally be in full ketosis, so hopefully we'll begin to see some improvements seizurewise (although it could take a week or longer). Please keep her in your prayers as she nears this all important phase of the diet!


Out like a light!!

Monday, May 12, 2008

So far so good...

Last night in the hospital wasn't so bad, a little uncomfortable, but not so bad. Reagan actually slept pretty well; half the time in the swing and half the time beside Mike...she is definitely a Daddy's girl. She is really teething now. She's been quite whiny and she's constantly chewing on her hand or your shoulder (leaving a trail of spit). Today they took some blood and urine samples so they have a baseline (of course neither of these turned out to be an easy task) and from now until we leave they are doing vitals every 4 hrs, finger sticks every 6hrs (to check glucose levels), and putting cotton balls in each diaper (which you squeeze onto a testing strip...yes, we'll be doing these at home) to check her ketone levels...so much for sleeping! She did finally start the diet today. The plan is for her to drink 20oz of formula a day (divided into 5- 4oz feedings) and ~8oz of "juice" (her sugarfree apple drink). They are slowly weaning her into the new KetoCal formula. The first 3 feedings were at 2/3 regular formula 1/3 Ketocal; she drank this like a pro! We were concerned because Reagan is not much of an eater but she finished each of these 4oz bottles within 15 minutes (which is quick for her) and even more surprisingly she did this without any flavorings added to them (just a little Stevia an approved carb-free sweetener). The next 3 feedings will be at 1/3 regular formula 2/3 Ketocal, the first of which will be between 10-11pm tonight. And then finally (starting around 3pm tomorrow), she'll be on 100% Ketocal. So I'm guessing it probably won't be until Wednesday that she is in full ketosis (and we could potentially see some seizure improvement as a result of the diet). We'll keep you posted!!


Sunday, May 11, 2008

Keto info

Today is the day we go into the hospital to start the Ketogenic diet. They called us this morning and we just have to be there sometime before 7pm tonight (allowing us to spend most of Mother's day at home, thank goodness). They don't actually start her on the diet until tomorrow, so I just wanted to ask that everyone would keep Reagan in your prayers, that she tolerates it well (some kids get sick at first) and that it does what's needed to stop these horrible seizures she's been having!
I had wanted to post more about the Ketogenic Diet so you all would know a little more about what exactly it is. My condensed description of it is basically a very strict Atkins Diet. Everything has to be painstakingly weighed out and everything she eats has to be at the correct ratio (usually a 4:1 or 3:1, fat:carb/protein ratio). It will be easy in the beginning because they are starting her out on a formula (KetoCal) that already has everything calculated for you. Once she moves back into eating solids (baby food), things will get MUCH more complicated. She can't have her beloved pear juice anymore...so I've already transitioned her into a sugarfree apple drink mix that we dilute even further. She doesn't seem to notice the difference. The Ketogenic Diet basically puts the body into a state of fasting or ketosis (where it uses fats for energy instead of sugars/carbs). Throughout history there have been many accounts of fasting being able to stop seizures; even the Bible makes reference to fasting and epilepsy (see Mark 9:16). . The Ketogenic Diet itself has been around for almost 100yrs, but most doctors didn't want to use it and preferred the use of medicines to treat epilepsy. It wasn't until the 90's that the diet saw a resurgence with the release of the movie First do no harm and a Dateline story on Charlie Abrahams (see the link to The Charlie Foundation for more info); doctors began to feel the pressure to use it more frequently due to parental demand. It's been shown work best in children and for certain types of seizures (including the kind that Reagan has). One third of the children that try the diet have a 90% or greater reduction in their seizures (many of which become seizure free), one third have a drastic reduction in their seizures (50-90%), and one third see no difference at all. We have high hopes that Reagan is going to fall into the 2/3 that have success on the diet (preferably the 1/3 that see the most dramatic improvement). As we learn more about the diet throughout the week I will try to post additional information as well as keep everyone up to date on Reagan's progress.

Below are some Mother's Day pictures we took this morning after church.



Saturday, May 10, 2008

Sweet Dreams

We have been really spoiled lately. I'm not sure what it is but Reagan has been sleeping so much better than before (and she's been overall much happier too, but I think that's because of reducing the Felbatol). For a while there she was waking up every 20-60 minutes all night long (and often times she would be up for at least one stretch of 1-2 hrs). Now she's down to waking up about 3-4 times a night, but I rarely have to pick her up (and if I do it's only for a few minutes to attempt to calm her down). Usually I'll get up and give her a little juice and she will go back to sleep. The extra sleep has been good for all of us. I'm a little concerned how this is going to work with our hospital stay. We're planning on taking the swing, so maybe it won't upset her routine that much (although we are going to eventually have to get her out of sleeping in the swing...she's almost completely outgrown that thing). Now, all this being said, she's been a little more fussy today and while she was crying Mike looked in her mouth (at the bump we've been watching on her bottom gums) and sure enough there are two little white slivers that appear to be the top of some teeth! Finally...she's teething! We've been thinking she was teething since she was 4 mo because she was always so spitty and fussy! Don't get me wrong, it's not that we're too excited about the irritability associated with teething, but we are happy to see them come in...we were getting a little worried about it.

Friday, May 9, 2008

Loose ends

I've been meaning to mention, my Epilepsy Awareness Bracelet came in the mail a few days ago and it's just beautiful. I love it. And I'm sure others will comment on it as well, and being an "awareness bracelet" it will open up a dialog for me to tell others more about childhood Epilepsy disorders and the devastating effects they have on these children. I want to encourage you to go to the link at the bottom of the blog and look at these bracelets and think about ordering one for yourself (or someone you love). A portion of every purchase goes toward Epilepsy research. (It's not an ankle bracelet...Reagan's just modeling it for you!)


Reagan has been doing this annoying thing lately. It's actually been going on for at least 2 weeks now, but it's so irritating! Every time you give her a bottle, it doesn't matter how hungry or not hungry she is, it doesn't matter whether it's juice or formula...she fights it! It's like she doesn't know how to suck anymore. She clamps down her gums and there's no getting the nipple in her mouth! Or if she does open her mouth, and she'll move her tongue from side to side or bite at the nipple. Like that's not enough, she'll also turn away or swat the bottle away from her mouth! It drives me crazy! I end up having to pinch her cheeks (into a kissy face) so that she opens her mouth and puts her tongue down enough to get the nipple in! This usually results in her fussing and crying, but more times than not, once it's actually in the right place for her to suck it, she drinks it no problem!! I have no idea why she's doing this now, but it's so frustrating!

For those of you that would like to be notified when the blog is updated (so you don't have to continuously come back to check), click on the subscribe to link at the bottom of the page. It will take you to a user friendly site where you can subscribe by email or in a reader to receive the latest updates on Reagan's blog. I apologize to those of you that are technologically savvy and don't need these sorts of things explained to you.

Thursday, May 8, 2008

Better day

Today was a much better day. Reagan woke up so much happier than she went to sleep last night. I was concerned that she was going to be a handful during the night last night, but she actually slept pretty well. She woke up 2-3 times (I can't remember which), but went back to sleep relatively quickly. I dropped her Felbatol dosage again today. She was getting 0.5ml 3x day, today I dropped it to 2x a day. Saturday will be her last dose...all I can say is good riddance! I wanted to apologize for the lack of pictures lately, I promise to post some pics tomorrow! Well, she just went to bed so you know what that means...

Wednesday, May 7, 2008

MRI/Lumbar Puncture

Today has been a long day...and it's not over yet! Everything went so well this morning, it really was an answer to prayers. Reagan had a good night's sleep last night, only waking up twice from 11-6. We put her in the car and she sucked on her pacifier (she couldn't have milk or juice) and fell asleep on the way to the hospital. She continued to sleep until they attempted to put an IV in (that's right...attempted). I warned the nurse that Reagan's veins have always been difficult to locate, but she didn't believe me. After her failed attempt she agreed to just let us go to MRI minus the IV. Upon arriving at MRI, they didn't seem to be aware of the fact that Reagan was supposed to have a Lumbar Puncture (under sedation) immediately following her MRI. I told the anesthesiologist and she eventually found the right people and the entire team was assembled. They decided not to do the IV until she was asleep (thank God) and they also agreed to take the blood that needed to be collected while she was under anesthesia (instead of making us to go the the outpatient pathology lab after all of this). They gave Reagan gas and she peacefully drifted off to sleep without a hitch and we were escorted out to the waiting room. About 2hrs later, they told us she was in recovery and we went to see her. She was groggy and a little fussy, but once I picked her up she was fine. After drinking a little juice, they agreed to let us go home. I carried her out on my shoulder, she was dazed, but otherwise happy and such a sweetie. We loaded her into the car and she slept the whole way home. A couple hours later she awoke with a vengeance and has been more or less crying ever since! So needless to say, tonight has been an absolute nightmare. She must be in pain, I'm guessing from the lumbar puncture, because we remember going through something similar after her first lumbar puncture several months ago. Poor girl, she's been through so much today, and was SO good this morning, but she is not a happy camper tonight (that's an understatement). She just fell asleep, so I'm off to bed for now, but I just wanted to thank everyone for your prayers and ask that you would keep her in your prayers tonight and tomorrow so that she can quickly recover from all of this and get back to her normal self.

Tuesday, May 6, 2008

Big day tomorrow

Reagan had another pretty good night last night. She only woke up ~4 times, and although she was quite hysterical each time, she calmed down and went back to sleep fairly quickly (considering). She didn't really nap much today, so she's had some periods of crankiness (especially during her PT session this afternoon). Tomorrow morning is her MRI/Lumbar puncture. They're putting her under general anesthesia so she can't have any formula past 1am and clear liquids until 5am. The actual time for the MRI is 8:45am, but we have to have her at TX Children's by 7:15am. It's going to be a long day for everyone...especially Reagan. Please keep her in your prayers.

Monday, May 5, 2008

Orthopedic appt

Reagan slept really well last night. She only woke up three times and slept 3.5, 2.5, & 2.5 hrs at a time, which is GREAT. Unfortunately the good night's sleep hasn't helped her mood much, she's been quite fussy today. Luckily, we've got a friend of the family staying with us through Wednesday to help out with Ms. Cranky Pants. Reagan had her orthopedic appt this morning (for the tightness in her legs/ankles). I like the doctor (she came very highly recommended), she was very thorough and wanted to hear Reagan's complete medical history. She wants to try AFOs first (Ankle Foot Orthoses), which are basically splints or braces that will help stretch Reagan's tight muscles out and encourage her to keep her foot flat and stand correctly. If those don't help, then she mentioned potentially trying certain muscle relaxing medications or even botox (yes, the same botox used for wrinkles, sounds strange to me too). I think it takes a while to get the AFOs, they have to measure her and then special order them for her. I look forward to seeing how they work for Reagan.

Sunday, May 4, 2008

Countdown

Reagan has been quite fussy today. It could be the medication or it could be the bump we're feeling on her gums. Of course, we have thought she was teething for months now and we were wrong! The seizures are about the same today. Tomorrow we'll decrease the Felbatol even further, so hopefully we'll see improvement with that. It's been a while since we've posted a picture, so below is a pic of Reagan with our 1st place trophies from the golf tournament yesterday (not that we're bragging or anything).
Today marks exactly one week until Reagan starts the Ketogenic Diet. We have high hopes that this is going to work for her. I will try to post more about the diet this week. There's a movie, First do no harm, that came out in the 90's starring Meryl Streep. It's a powerful movie about Epilepsy and the Ketogenic diet. I would highly recommend it. For those of you unfamiliar with Epilepsy, it gives you a glimpse into what these kids and their families go through on a daily basis. The situation is a little different than ours, this little boy doesn't begin having seizures until much later, but all families dealing with epilepsy can relate to the frustration of dealing with doctors and endless list of medications/side effects these kiddos have to endure trying to find something...anything that works!

Saturday, May 3, 2008

Brat

Well, it's official. We have a spoiled brat on our hands! Today was Mike's company golf tournament (which our team won by the way) and my mom watched Reagan for us. She fell asleep shortly after we left, but when she woke up an hour later she went psycho baby and cried inconsolably for 2 hrs straight until she cried herself to sleep. When she woke from that nap, she started back up again. Right around that time I called to check on her and I heard her crying and my mom told me she had been doing this the entire time! My mom kept telling me not to leave and that she would just cry for me anyway, but I decided to leave with a few holes to go (luckily the course is right down the road from our house). I got home and picked her up and immediately she was a different baby, happy and smiling for the first time since we left. Can you say brat?? On a good note, at least she knows who I am and can tell when I'm not around, that's good right? But does that mean that I can never leave?? What's strange is that Reagan LOVES her Grandma! When she's fussy for me, a few words from Grandma over the phone always cheers her up! But she has been extra fussy lately...I really think the Felbatol is partially responsible. I remember when we were starting her out on the Felbatol she was extremely irritable. She was crying so much, we thought she was in serious pain! I can't wait to get her completely off of this stuff! I just hope we see a decrease in these seizures as well. She's still having a lot of them, but (thank God) we haven't seen any more of the tonic seizures.

Friday, May 2, 2008

TGIF

Last night was rough to say the least. Remember me saying that eventually Reagan had to stop crying?? Well, that wasn't the case, she continued to cry all night long! She didn't go to bed until around midnight but every single time she woke up last night (which was a lot), she woke up hysterical! She was so inconsolable that we ended up giving her the clonazepam at midnight (instead of waiting to give it to her in the morning). But somehow when she finally got up around 8:30am...she was fine. Don't get me wrong, she had her moments today where she was really fussy, but NOTHING compared to last night. She also made it through the day (so far) without having a tonic seizure...we are SO thankful for that. She's having a lot of other seizures though. She's had a lot of little twitches all day long, as well as the stronger clusters that tend to lead into the tonic seizures. We're just praying she's on the down slope and that we're going to see less and less of all of them.

Thursday, May 1, 2008

Crazy night

Well, it's 10pm and she's gone all day without having one of the scary tonic seizures. I just pray that this will continue because I never want to see another one of those...ever! I had a few scares this afternoon, when she woke up from her naps she did have quite a few of the strong clusters (that typically precede the tonic seizures), but she managed to shake it off. She has been quite fussy tonight though. We had our weekly Bible study tonight and left her with Grandma and apparently she cried the entire time we were gone! As soon as we got home she seemed to be happy, we all thought maybe she just missed her Mommy and Daddy. Unfortunately the hysterical crying has returned! On a positive, eventually doesn't she have to stop crying? Maybe she'll tire herself out (she's only been crying for ~3hrs or so) and sleep soundly tonight?!? We can only hope! But most of all we're praying for another day free of those bad seizures!

Good morning

As I'm sure everyone knows, Reagan has had big seizures the last 2 mornings in a row. Something I didn't mention was that each morning after the seizure we gave her a clonazepam...we're supposed to give it to her at night to help her sleep but we never really noticed it helping. For those of you that don't know, there is something called Diastat that is a rescue medication for seizures (it's rectal valium...yuck), but this clonazepam is kind of a milder form of that. Anyway, we've given it to her each day after these bad seizures and Thank God she only had one of those a day. So this morning when she woke up crying at 5am we gave her a clonazepam with the hope that maybe it would prevent the big seizure in the morning when she woke up. So far so good, she woke up at 8:30am and thank God she hasn't had one today. She's been in a pretty good mood (although she's growing impatient with me right now) and has not had as many seizures as she typically does when she wakes up. It could be the clonazepam or it could be that the Felbatol is finally decreasing in her system (or the prayers). I don't know, I'm just happy with the result. I know we're not in the clear yet...but I'm very thankful for the good morning we've been blessed with so far today.