And Then - A Shellfish Allergic Reaction

Overall, Raquel has been doing really well since my last post over a month ago. I am going to stop posting about how seizures are reducing because everytime I do, they return. They have definitely improved since taking her out of school but are still very much a part of our reality. Fortunately for her (us), they are manageable right now. I hear from parents all the time that have kids who experience 10, 20, 50+ seizures a day. I cannot imagine what that might be like. Actually, I think I can, and that's why it is so humbling. Who am I to complain? I can't and don't. I just roll with it.

Before I update what has happened since my last post - a lot of good things! - I just want to back up a couple days...

Sunday morning, Raquel had one of the worst seizures in a LONG time. She started to turn blue (yes, I freaked out), and Mike told me to call 911. This seizure lasted probably 3-4 minutes. As soon as I grabbed the phone to dial, she came out of it and her coloring got better. I then gave her all of her regular meds along with 1/2 extra Keppra pill. The previous night I don't think I got all of the meds in her, so her medication levels were probably off. That's why I think it was so bad. Besides being very tired, she had a pretty good day.

Then on Monday night, Mike BBQ'd some lobster & steak (thank you, Mom & Dad!). I never give Raquel any shellfish, mangos, honey, nuts, etc. - any possible allergic reaction triggers - so I made sure not to give her any lobster. After dinner, she had her bath and I noticed that her eyes became very watery, itchy, and bloodshot. I immediately took her out of the bath and got her dressed. Then her face started to swell up. Apparently what happened was when Mike took the lobster off of the BBQ, he set it on top of the steak. Although the amount of "drippings" she must have consumed from that was very slight, she obviously cannot tolerate it. I am so thankful that I didn't give her a little piece to taste like I wanted to. That would have easily required the use of her Epi-Pen, or put her back into Children's Hospital, a place I love but don't wish her to be admitted to again any time soon. Sometimes you just find out things the hard way.

So, after Monday night's events, I've promised myself to be a lot more diligent about making sure I have a "safety pack" for Raquel - and all of us for that matter. I have to make sure I have the Epi-Pen, the Benadryl, the Valium if cluster seizures happen, not to mention a supply of meds. It's so easy to get in the car and run down the street to the grocery store and not think another thing about it. But a lot can happen when you are outside of your home, even if it's just a mile.

As far as the Keto Diet goes, we've pretty much implemented it, however, I've been unable to reach our nutritionist since she gave me the week 1 meal plan in November. Don't know what the deal is - she couldn't have stressed more about communication being key - but maybe the holidays just got in the way. I'll try again come January and really want to move forward with this. She still has applesauce to take her meds, and I'm still letting her have a bit of juice, but besides that, she has the allowed low-carb breads, shirataki noodles instead of pasta, cauliflower mashed potatoes, etc. She doesn't seem to be deprived or missing all the carbs she was previously consuming. And we are just keeping favorite items - like the sweet potatoes - out of the house. I would feel really bad making them for the rest of us and then simply not giving any to my rock star.

It is still very much a learning curve, and to cook things is a real adjustment. The weighing, measuring, calculating makes my head spin at times. Math was never my favorite subject in school, so that's not helping matters any. It is making Gabby want to study harder in math. She always says that she'll take care of her sister if something happens to me, and I don't doubt that for a second.

I am very happy to report that her in-home schooling has started. I'm even happier to report that her teacher is Miss Crystal - her actual kindergarten teacher!! Having her here working with her is a dream come true. It is so nice to see Raquel respond to her in a positive way and for Crystal to see a whole different side of Raquel. We've already re-defined the IEP goals, and I'm actually looking forward to the annual IEP on January 5th because Crystal will be there and will be able to provide input that the district will listen to.

Crystal in the house daily is so much different than in-home therapy was. I don't have to sit in with her unless I want to, and she works with her on academic skills and doesn't try to get her aggitated to provoke behaviors. :) We've discussed implementing a PECS program as well as a transition station, so that will be something to work on come January. Besides the academic skills, Crystal also works on speech and occupational therapy, and I just got a mini-trampoline for them to use during music time, which will help strengthen her leg muscles. But shhhh, it's from Santa. :)

We are also checking into the iPad program that has been very successful with some Autistic kids as well as those that are lacking communication skills for other reasons. It's been shown that it allows kids to effectively express their needs/emotions by touching a button. I would love to have Crystal be able to incorporate this in with her teaching.

Overall, I'm very pleased with how things are going. It's still a day to day thing, but I'm happy to say that we are experiencing more positive days than negative ones.

Keto Diet Still Pending

I really had every intention of starting Raquel on the Ketogenic Diet on November 1st as planned. But I can honestly say that gearing up for this thing is taking a little bit more work than I anticipated. Yes, I've got the scale, the books, the list of foods - and meal plans for the initial week, which are kinda hard to decipher. But oh my gosh!! There's just so much to take in and change. I'm very overwhelmed right now about how to deal with the process because the household is going to be turned upside down once this goes into effect.

So, let me just back up a bit and post a couple Halloween pictures. This year, I took the girls to the local mall for trick-or-treating and have to say that it was a great experience. Safety wasn't an issue, the weather wasn't a factor, and we could've really made a night out of it by going out to dinner or bowling or something once they stopped handing out candy.

Here's my happy little pirate. Arrr!!!



And her big sister, the genie.

Good times. We continue to make the best of things because, to quote a special friend, "that's how we roll."

Okay, back to the diet situation. For starters:

• The meal proportions are large and she has to eat everything. Raquel likes to eat small frequent meals, not so much 3 big ones plus 2 snacks. She can eat here and there all day long. Not on this diet. Everything is weighed, calculated, and measured.
  


• She loves her juice. I dilute it with water, but this is no longer a consumable item. Water is the preference, but who seriously wants to drink nothing but water all day? - and I'm a huge water fan. And water is critical in this diet to help prevent the development of kidney stones.
  


• I'm having issues with using artificial sweeteners. She can have a Diet Sprite but no apple juice? I get the idea behind it, but don't particularly agree with that being a beverage of choice. She can have some sugar free flavored water, but again, we're going back to the artificial sweeteners. I think the carb-free Stevia is going to be my new friend. I just need to figure out how to use it.
  


• The medications in pill form are a challenge. I'm used to squirting the liquid meds in her mouth with a syringe type thing. The pills taste bitter and the only thing I can do to get them in her is to hide them in applesauce or yogurt - which are, of course, two more items she can no longer have. Fortunately, I'm getting some good feedback from my Keto support group on ways to do this. It'll just be a work in progress. If I keep her on liquid meds, that does something to her carbohydrate load and more calculations are required and blah, blah, blah - I'm going to make the pill thing work at this point.
  


• I still need to get the sugar free multi-vitamins, shampoo, lotions, toothpaste. I never realized sugar was in all this stuff until I started looking for sugar-free brands. Sugar needs to be in shampoo why?
  


• Just got the urine sample testers today. But there was no need for them before because there's really no reason to test her since we haven't implemented the diet.

On the positive side, she has suddenly started liking eggs. Fried, scrambled, poached, you name it. She never would touch those things before. I've started to reduce the amount of "bad" carbs she is consuming and replace them with more preferred ones. I've located steel-cut oatmeal and have an idea of how to cook them. She continues to enjoy the tofu Shirataki noodles, which she'll now eat for spaghetti - as soon as I figure out how to make the keto friendly tomato sauce. :)

Now that she is on pill forms of her meds, it really is nice. I only have to give them to her twice a day instead of 4 times. There's been an adjustment period - she gets tired earlier than usual because she's getting a full dose in the morning and it's not split up - but once I give it to her at breakfast, I don't have to worry about it until bedtime, which is a really great thing. I started her on the pill format on Monday - and we've had 3 seizure free days. I'll take it. I'll take any day without a seizure. Any afternoon for that matter because they've been pretty frequent these days.

Hoping to start in-home academics/therapy during the intial diet phase very soon. That's a paperwork thing at this point but am pretty sure it'll happen. Raquel has her next follow-up with her neurologist on January 23rd.

Thanks go out to the best friends and family in the world for your constant love, support, and encouragement. It means the world knowing you are there for me, give me strength, and don't judge. You all know who you are, and you rock. xoxo

Keto Diet Starts November 1st

We met with the Ketogenic Nutritionist this last Wednesday to discuss the diet specifics in more detail. Vanessa still recommends the Low Glycemic Index Treatment (LGIT) part of it, but it is definitely a lot more restrictive than I originally thought it would be. Raquel fortunately won't have to be admitted to the hospital for the supervised fasting in order to get the ketones in her optimal state. Instead, this will be done at home, and there is no true fast - we simply begin removing (A LOT) of certain foods from her diet and replacing them with new ones. I'll need to test her urine twice per day, weigh and measure food, monitor her weight, and keep very diligent records of everything.

The reason we aren't starting the diet before November 1st is because there are things that need to be put in place before then. For starters, I need to get food scales, measuring cups, books, urine testers, etc. I also need to take her back to the hospital for another full bloodwork panel, and Vanessa needs to discuss everything with Dr. Mower. The nutritionist and neurologist work side-by-side with this. I also need to get all of Raquel's medications in pill form. She can no longer take liquid meds of any kind due to the glucose content in them. I will need to purchase "keto friendly" toothpaste, soap, lotion, shampoo, conditioner, detergent, etc. I can honestly say that I pretty much thought I would leave the consultation with a list of foods she could and couldn't have, how much of what, and be done with it. So not the case. This is definitely a HUGE commitment. But, if she responds well to it and seizures decrease and medications can be removed, it will be well worth the effort.

And then we discussed some of her favorite food items that must be entirely removed: pasta, sweet potatoes, baked potatoes, corn, bananas, cantalope, kiwi, pineapple, and, gulp ... her beloved watermelon. And no fruit juices at all. Thankfully, she can still have milk, yogurt, cheese, beans, pears, grapes, and most vegetables. And, she can have pretty much all meats. She does like the tofu shirataki noodles so I can always make spaghetti for her with that. And there is something called "miracle noodles" that I'm told makes a really good macaroni-n-cheese. Basically any carbohydrate she consumes must have a glycemic index of less than 50. And I'm discovering that most of what she east is well above this.

Vanessa says that it typically takes about 3 weeks on the diet before before you are able to detect ketones in the blood and urine, which is why I will be testing her daily. Until Raquel reaches her state of ketosis, Vanessa will be sending me meal plans and snacks that she wants me to consistently use for this initial phase. Once in ketosis, we can begin adding more foods to the mix and we'll have a bit more flexibility. She will have 3 meals per day, including 2 snacks. These need to be given on a routine schedule with not much fluctuation in the times. She will also need to take vitamins and supplements to keep her healthy and strong.

There's a lot to learn, a lot to take in, and a lot to gear up for. My biggest concern is Mike. Raquel always wants to eat what her dad is eating, so a little nibble here and there from his sandwich or plate like he's used to giving her will no longer work when the food scale comes into play. I have to monitor every morsel she eats and drinks and not stray from that. One little piece can throw off her ketosis. This basically means I will need to meal plan, meal plan, meal plan - and have everything measured in its containers and once they are empty, she's done for that particular meal. And then make sure Gabby & Mike get the importance of that.

I will pretty much be dealing with Vanessa on a regular basis. I see her again in mid-December, which she is predicting will be about six weeks into the diet - and three weeks after she has reached ketosis. More blood work will be done for evaluation at this time. I have committed to try this diet for a 3 month initial period. We should be able to notice changes by this time. If she appears to be responding in a positive way, we will keep her on the diet for two years. After the two years, the diet is weaned slowly.

On then Banzel side, Raquel seems to be responding pretty well. No seizures since I started gearing up to Dr. Mower's requested doseage. That's only been a few days, but I'll take it. It does appear to throw her sleep off - if she naps at all, it's very brief, maybe 20 minutes. But I'll take that as well. And she's staying up a bit later than she usually does. Hopefully this is only an adjustment period. She also has developed a rash, which I'm told is okay for this med. As long as she doesn't end up for a week in ER, I'm happy with it at this point. :)

As far as her school goes, I have decided to keep her out and plan on doing so until after the first of the year. Now that this new diet is starting up, and the holidays are approaching, I feel it is in her best interest to stay out of school until we can tell how she responds. If she gets sick, ketosis can also be thrown off, so that is another concern I have with the school - not to mention her getting a cookie here and there, which would inevitably happen in her class.

I'm happy as I can be right now. And I plan on cooking all of Raquel's favorite foods this week. November 1st will be her very soon. We'll see where our journey takes us after that. But I'm thinking it's going to be onwards and upwards. Again, I have big hopes for my girl!

The Oak Tree

This was shared by another Mom going down a similar path as me, and many, many others. Thought it was worth posting.

The Oak Tree
by Johnny Ray Ryder Jr

A mighty wind blew night and day
It stole the oak tree's leaves away
Then snapped its boughs and pulled its bark
Until the oak was tired and stark

But still the oak tree held its ground
While other trees fell all around
The weary wind gave up and spoke
How can you still be standing, Oak?

The oak tree said, I know that you
Can break each branch of mine in two
Carry every leaf away
Shake my limbs and make me sway

But I have roots stretched in the Earth
Growing stronger since my birth
You'll never touch them, for you see
They are the deepest part of me

Until today, I wasn't sure
Of just how much I could endure
But now I've found, with thanks to you
I'm stronger than I ever knew

And Then There Is Banzel

It took over a week to get the medication since Dr. Mower added Banzel to Raquel's anti-convulsant schedule. After we spoke the last time I posted, he immediately called the prescription in. I was told by the pharmacy the next day that I was denied the medication, and it went back and forth, and back and forth between my health insurance company and Dr. Mower's office for about a week. My insurance wanted Dr. Mower to substitute Banzel with a less expensive medication. Remember, they start with the cheapest drug possible and then add more expensive, more appropriate drugs in the mix after unsuccessful trials of the cheap one are determined to be ineffective. Yes, just my opinion but I've been dealing with this nonsense for several years now. Dr. Mower said that if he wanted Raquel on a different medication, he would have prescribed that. Just more pharmaceutical/insurance drama. But Dr. Mower holds his own. My kind of doctor.

I got a letter in the mail yesterday from my health insurance that stated the reason for them denying Raquel the Banzel: "After an evaluation for medical necessity, your request for Banzel cannot be approved due to an inadequate trial of Lamotrigine (Lamictal)."

Really?? I thought 2+ weeks on Lamictal was pretty significant - especially considering she ended up in ER and at Children's Hospital for a week due to the life threatening allergic side effect called Stephen Johnson's Syndrome. I guess they had no problem paying the hospital bill and want to do it again. Where's the logic here?

Today, I picked up the Banzel and am hoping and praying she responds well to it. It's one of the newer, more expensive mediciations out there. I have a journal and am documenting everything - all behaviors, eating changes, mood changes, etc. She had her first dose this morning at 11am, and I did notice she got really tired about 30 minutes later, and her walking became very unstable. I'm sure there will be an adjustment period. She is still on her regular Keppra schedule, the Banzel is in addition to this, so it's typical for her to experience different side effects until her body adjusts. At this point, I'm just hoping for the best. She really is such a trooper.

Unfortunately, due to the increase in seizure activity, particularly happening at school, I've chosen to pull her out of kindergarten until she is more stable. I spoke with her teacher yesterday and, if all goes well Banzel wise, will try to start her back up in class this coming Monday, October 10th. I'll just have to see how the rest of the week goes. But I've got high hopes for my Rock Star. :)

More Medication Changes

I spoke with Raquel's neurologist this afternoon. He obviously wasn't happy with what I was reporting, and feels that Keppra is no longer working at its full effect due to the increase in Raquel's seizure activity in such a short amount of time. Because of this, Dr. Mower put in the order for another anti-convulsant called Banzel. Side effects are like Keppra - on the light side - and nothing that should put her back in the emergency room for a week like we experienced with Lamictal a few months back.

The reason he wants to add this new medication instead of waiting until after the Ketogenic Diet is implemented next month, is because he says that the diet can take several weeks before changes are noticeable, and he did not feel, because of such an increase and them occuring out of nowhere (not just when she's stressed or overly tired anymore), this was the route to go. If we feel she is responding well to the diet, Banzel will be the first drug to be removed.

I was also instructed by Dr. Mower that if more head drop seizures occur, and are frequent like they were in the car the other day, I need to immediately give her the high dose of valium and to treat these exactly like I would if she was having "cluster" seizures.

In the meantime, since she'll be on the Low Glycemic Index Treatment diet to start with, I'm going to start removing the bad carbs she's been consuming, and replace them with gluten free comparable items. There are so many more products readily available now than when Raquel was previously on the GFCF diet, this will be much easier to do.

Head Drop Seizures

The majority of Raquel's seizures are called tonic seizures, where she'll suddenly get stiff as a board, raise her arms over her head, her face will grimace and typically get very red. Sometimes her eyes will start to roll back, and she becomes very unresponsive. But there is no visible shaking during these tonic seizures. They last anywhere between 30 seconds to a couple minutes from start to finish, and afterwards, although tired, will usually just go about her business. I do pretty well with these and don't tend to freak out too much anymore. Gabby may say different...

Then there are the myoclonic ones, where she has a jerking or twitching of a muscle group - almost always her arms. These are brief, and she responds well afterwards for the most part.

She also has some called tonic-clonic seizures. These are the ones that are referred to as "grand mal seizures", where the "blue factor" can come into play, and I totally freak. Fortunately, these are not as often. She'll start out getting all stiff (the tonic phase), and then the arms and legs jerk rapidly and rhythmically (clonic phase). Her lips and/or cheeks sometimes begin to turn blue due to lack of oxygen, and she often loses bladder control. These can last up to 3 minutes - for her - and consciousness returns very slowly. When she does come to, she appears very drowsy, disoriented, confused, and sometimes aggitated. She always wants to sleep. Gabby handles all of these seizure types like a pro.

Earlier this week, after having one of her tonic-clonic seizures, I posted about atypical behavior she was showing afterwards and that she had these weird head jerks. These are unfortunately head drop seizures.

This morning on our way to school, Gabby kept looking at Raquel in the backseat and I could tell she was concerned about something. She said Raquel started to drool a bit - which is not normal for her unless a seizure has occurred. Then she started dropping her head. She must have had 20 head drop seizures in the 10 minute drive to her school. At one point, Gabby was timing them at happening every 12 seconds. I, shockingly, handled these pretty well. I guess it's because the duration is so short - just a few seconds or so. But this is the first time I have ever seen Gabby get visibly upset. She started crying and climbed in the backseat to hold her sister and kept asking her what was wrong and if she was okay.

I immediately did a u-turn at Raquel's school so I could take her home and watch her. She was done with therapy for the week and Friday is just a play day for her, so she wasn't missing out on much except for social activities - and me being able to go to work. But I felt it was best to keep an eye on her.

I don't know why she has developed these seizures now. Nothing has changed medication or diet wise. Perhaps it's just another side effect from the medication. I am so thankful to have joined these online support groups, and am actually looking forward to meeting with the Keto Nutritionist to see what other options are available.

Keto Nutritionist Appointment Scheduled

I spoke with Vanessa, our Ketogenic Diet nutritionist, and have scheduled an initial appointment with her for October 19th. This will be a 2 hour appointment and Raquel is required to be there so she can evaluate her. She has also asked me to read a book (I already bought it), and search several websites and blogs that she gave me to familiarize myself with the diet more.

Based on our conversation and the questions I've answered, she is initially suggesting that we implement a Low Glycemic Index Treatment (LCIT) form of the Keto Diet, which she said is the least restrictive. She recommended LCIT mostly because Raquel isn't having seizures multiple times per day and thought we should start at the lower end of the diet which allows for more carbs.

She did say that she has treated all kinds of kids, some who didn't respond well to the Keto Diet, that developed behaviors, regressed, etc., to others who are completely off all medications and have been medication and seizure free for years. She said this is completely an individual thing and requests that we consistently stay on the diet for 3 months. At that point, she (we) will be able to tell if it's working or not. After 3 months, if we feel she is adjusting to the diet, meds will start being reduced and we go from there.

Obviously, I will get a bunch more info about the process come October 19th. In the meantime, I'll keep everything as is diet and medication wise, and start doing my homework.

In A Lack Of Better Words ... Seizures Suck

I wish I could say that Raquel's seizures have improved, that's not the case. They have increased quite a bit - and I'm getting very concerned because I can't seem to identify what is triggering them. Simply being overly tired and overly stressed isn't working for me anymore.

She had a pretty good week in school last week, a couple mild seizures again in class, but nothing to the degree where I had to go pick her up. Friday I kept her home from school because she was sick - one of the perks of being back in school as everyone knows - and then I decided to keep her home again today because of the seizure activity yesterday and then again early this morning.

Yesterday's seizure pretty much came out of nowhere. She had a good morning, appeared to be feeling much better (from what I call the ace in my pocket - Frankincense & Myrrh Cold & Flu Prevention Homeopathic Rubbing Oil. I rub 10 drops to each foot at night before bedtime when symptoms start, and, wah-lah, it boosts immunity, and it is all natural.) We did errands in the morning, had lunch and a bath, had her meds on her regular schedule. When I was dressing her after the bath, she got really stiff in my hands and her eyes started to roll back. I immediately layed her on the floor - and, of course, called Gabby. Her face turned red and she began to shake a bit, but remained very responsive to her name and would even follow Gabby's eyes back and forth to keep looking at her.

What happened after this seizure was completely different and concerning. After she "came to", she rolled over on her stomach, which wasn't typical. Usually she gets up and walks around like nothing happened. Yesterday, she layed on her stomach for a minute, still shaking briefly, and when she finally was able to get up and walk around, her head would drop and twitch and she'd lose her balance. This happened maybe 5 times. I'm assuming this is what parents are referring to as head dropping seizures. Not sure.

Last night she slept soundly, and I had every intention of taking her to school this morning. But just as I was getting her changed into school clothes, she checked out on me again, but very briefly. I thought it was best to keep her home and let her rest some more. My respite worker thankfully came so I could go to work, and when she took her on her usual walk, she had another seizure in the stroller. She then slept off and on until I was able to get home later this morning. So frustrating.

Dr. Mower has talked to several neurologists and has reviewed Raquel's medication therapy and tests/results with them and again wants me to meet with the Ketogenic Diet Nutritionist. We've been playing a bit of phone tag, and am waiting to get my initial appointment scheduled. Although I'm very concerned about this diet - from what I've read it's similar to an Atkins thing and exactly the opposite of how I cook - most of the people from the Keto support group report amazing things. I spoke with a mom today whose kid has been seizure free since starting the diet in the last year and is also no longer on any medications. As much as the diet concerns me, I'd much rather, at this point, try something like that instead of introducing another medication and dealing with more harmful side effects. Hopefully I'll get the consultation scheduled soon and can make decisions from there.

Plugging Along

After Raquel's seizure in kindergarten on her 3rd day of class, she had two more in school at the start of the following week. I assumed the initial seizure was due to her meds being out of whack, so I was extremely diligent about making sure she had all of her doses in her at pretty much the same time of day after that. And she remained seizure free at home.

I was surprised last Monday when they called me shortly after I dropped her off. The nurse told me she had a seizure during her initial circle time, but it wasn't as bad as the first one - she didn't turn blue at least - and by the time he got to her classroom, she was up and around and even having some breakfast. I chose to keep her there in class and see how she did. Besides being tired and falling asleep off and on in the car on the way home, she seemed okay. Tuesday's seizure was pretty concerning, lasting far longer than they do when she has them at home, and although she thankfully didn't turn blue again, her complexion did change and she was a bit out of sorts. I immediately went and got her. She fell asleep on the way home and then slept and slept off and on for the rest of the day and then all through the night.

I didn't sleep much last Tuesday night, was concerned about what was triggering these things if all her meds were in check. I knew she wasn't overly tired because she seemed to have really caught up with her sleep, and she definitely wasn't stressed at home. I was just at a loss. When I dropped her off on Wednesday, I left in tears. I know that made the teacher feel bad, but part of me wanted to sit in the parking lot holding my cell phone waiting for Nurse Brian to call me to come get her. Instead, I needed to go to work. Thank you, Terri, for coming in my office and letting me cry on your shoulder. It helped.

I can't begin to describe what it feels like having a non-verbal child who cannot tell me what is bothering them, who is unable to use sign-language due to lack of fine motor skills. It is a constant guessing game. I do not know what was stressing her during class, if that is what was occuring. Maybe it was stress due to transitioning from preschool to kindergarten. I don't know. And I still don't. But when I picked her up last Wednesday at the end of class, I was told she had a great day. And she hasn't had a seizure in school since. I know that has only been 4 days if you count today, but I will take it. The cup is half full, right?

I have a call in to Dr. Mower, at Nurse Brian and the school district's request, to put a seizure control plan in place. They want her neurologist to specifically document what he wants them to do and when to do it when a seizure takes place, ie. when to administer meds and what kind, when to call 911, etc. I'm waiting to hear back from him. I did hear back from the Ketogenic Diet nutrionist about scheduling an initial consultation. I just haven't wanted to call her back yet. :)

Here is Raquel in class, happily ready to get started in circle time.



Me and my girl waiting to join up with the rest of her class coming from the bus stop. When I've walked over by her school on weekends, I would intentionally run up and down all the stairs just to get some extra cardio in. I no longer like them. And there shouldn't be that many. Really.



Gabby proudly giving Raquel a "Big Sister, Little Sister" necklace.



I think Raquel liked it. They continue to have a very special bond.



Let's see what this week shall bring...

And on the 3rd Day of Kindergarten...

... a seizure. I was at work for less than 5 minutes when I got the emergency call to go back to her school. I'm told it lasted about a minute and she started to turn blue. The nurse was obviously called and stayed with her until I got there. I can't say I'm shocked that she had a seizure - she has been fighting me with the meds for this last week something fierce. This morning when I dropped her off, she must have spit out half of her dose. It's been impossible lately to see exactly how much she is truly digesting. She's so over getting liquid meds 3 times a day, and I can honestly say that I'm so over having to give it to her.

When I picked her up, she appeared fine, coloring was great, just seemed a little tired which is typical. They said she ate some breakfast and was up and walking around before I got there. I had the choice to leave her at school but chose to take her home to get more meds in her, just in case. And, of course, I called her neurologist.

Dr. Mower put in a prescription for a tablet form of Keppra, which I think she will take much easier. The Lamictal she was on - before she developed the life threatening rash - was awesome. I could just plop it in her mouth, or in a spoonful of applesauce, and it was a done deal. The liquid stuff has been increasingly difficult.

Dr. Mower also put in a request for me to see a dietician to discuss the Ketogenic Diet, which I've been against since he first mentioned it to me. He's spoken to other neurologists about Raquel and her experiences, and they think this is something I should seriously consider pursuing. Sigh.

On a positive note, Brian, the nurse, took my generic Benadryl so all that is settled. He is a really great guy and I like him a lot. And I also like her teacher and the aides. Everyone seemed to handle the situation just fine.

Let's see what tomorrow brings, shall we?

Kindergarten!

I can't believe Raquel started kindergarten yesterday. She did good, had pretty much an okay day and seemed to adjust for the most part. They had some difficulty finding a chair for her to sit in - she kept sliding out of most of them - and the desks were way too high for her age group, so they had to make some adjustments. But I'm proud of her for handling her first day back to school after summer break as good as she did. Besides having unfamiliar teachers and students and classrooms, it was pretty chaotic in the morning. Buses were late, kids and parents were flying around all over the place, and parking was a nightmare. None of that seemed to phase her.

Her class is kindergarten through 4th grade, with 11 students total, one teacher, two aides. Everyone seems very nice. The only difficulty at this point is that I have to walk her to class and pick her up. The bus stop is very far away - on the opposite end of campus - and with her low muscle tone, I think she'd be completely worn out by the time she got to class to start her school day. We'll just have to see how this goes. She walks to recess just fine, and the school has tons of stairs and inclines so hopefully these walks will help strengthen her legs. But I don't mind going to her class. It's nice to be able to peek in the window and see what she's doing when I pick her up as well as answer questions the teachers and aides have about her.

She had an even better day today. Had occupational therapy in the morning, and when I picked her up, she was having fun playing blocks with a classmate at the table. That was really nice to see.

The only problem I'm having right now is getting her meds squared away at the nurses office. She is required to have Benadryl there in case she has an allergic reaction. Her pediatrician specifically wrote "Benadryl" on the medication sheet and didn't mention the actual drug name itself, so the generic brand I brought isn't good enough. The problem: Benadryl is no longer being sold because it was pulled from the manufacturer to be repackaged due to an error in the dose chart. I've driven to pharmacies all over the place with no luck, so now I have to go back to the pediatrician and have her sign a new form stating that a generic brand is okay. It's always something. Hopefully I can get this this resolved tomorrow and be done with it.

Glad my little angel is getting back into her school routine. Will be even happier when Gabby starts to get back into hers next week. It's been a long summer!! :)

Summer's Over?

I don't know about you, but this seemed like one of the fastest summers ever. The break has been very nice, but I'm kind of looking forward to getting the girls back in the school routine.

Besides having a follow-up appointment with the neurologist in July, summer has been pretty uneventful. No trips to Children's Hospital, no serious allergic reactions, nothing too stressful. I wish I could say she's been seizure free, but that's not the case. I do, however, pretty much contribute them to her meds being a little off. Sometimes she'll spit some out and it's hard to tell if a full dose was digested. Other times, Mike will forget to give her the morning dose - he's not the best one to be in charge of this - and then her levels obviously drop. I've gone back to keeping a journal and documenting when I give it, how much, and what her behaviors are. It just helps with determining patterns. And it's nice to reference it when I need to speak with the doctors.

Being overly tired and stressed are still seizure triggers for her as well. If she goes a couple days without napping, I try to get her to bed earlier to compensate for it. Stress is the real tough one because I don't always know what situations are stressful to her. For instance, a couple weeks ago we were at the pharmacy picking up her meds and I put a vibrating back massager on her. It startled her so bad that she had a full blown seizure - one of the worst ones ever. This time it was the pharmacist telling me to calm down. Yes, I still freak out, but I'm getting better. Seizures are just frightening to watch. Gabby remains the pro at them, keeping her cool and using her head. I think that's why Raquel responds so well to her voice.

We pretty much stayed close to home for summer. Mike was diagnosed with Lyme's Disease a few months ago and continues to have some health issues. His joints get very sore so it's hard for him to walk and he fatigues very easily, so walking around amusement parks wasn't in the picture for us. We did lounge around a hotel for a week ...





... but spent the majority of our time at the beach. And how can you complain about that?



You can't - not when you live in Southern California!

Here's Raquel in her new wagon - one of the best investments we've made. It has an umbrella, the sides come down so it's a bench that you can sit on, and it holds up to 250 pounds. We pull that thing all over the beach sand no problem! And Gabby can ride in it, too.



Me and my baby - who isn't such a baby anymore! :(




Running through the waves with Dad.



She absolutely loves the water.





I think the smile says it all.



Last week we were blessed to meet Raquel's former teacher, Mrs. Sara and her aide, Mrs. Heather, in Carlsbad. I guess I can probably call them Sara and Heather now. :) We've stayed in touch since the last day of school, but this was the first time we've seen them since her preschool graduation. I was so happy and encouraged to hear their comments about Raquel. They noticed how much calmer she was, much more focused, not as shaky, and Heather said that she finally looked like she wasn't in any pain. At this point, I think we are in a good place medication wise and am so thankful Dr. Mower didn't make any changes at her follow-up.

Me, Heather & Sara. Thanks you two! Your encouragement, support and advice means the world to me, and I will continue to be Raqi's biggest advocate.







Tomorrow I pick up Gabby's books and then finalize paperwork and meet the nurse at Raquel's school across the street. Raquel is officially in kindergarten this Monday. Wish us luck. And, of course, I'll take pictures...

Good-Bye Preschool!

I knew the day was fast approaching, but it really seemed to get here amazingly quick. My girl graduated from preschool today. She is officially in kindergarten!





Again, I cannot say enough about these amazing women who have taken Raquel under their wings and allowed her to grow. At one point over the last couple weeks, I asked them if she really was ready to move on - because I was perfectly fine with her staying behind a year since we finally found an awesome class. I was told that it wouldn't be fair to her to keep her, that they've been working on transition skills, and that she's ready and will do fine. I guess I'm the one that isn't ready. Shocking, I know...

Here she is with her teacher, Ms. Sara at the Beach Party last week.



Getting hugs from Ms. Heather, who Raquel grew very fond of. We even had to prepare Raquel for days when Ms. Heather wouldn't be there so she would continue to be, umm, "cooperative" with the others.



Today they had a graduation party that was a lot of fun. Ms. Sara played a slideshow of pictures from the year, which was very touching. Of course I cried. Again, shocking. They also made memory books for us to take home. That is something I will treasure always and it provides a glimpse of how she spent her days while at school - from being taught in a classroom, playing on the playground with "friends", to wearing a chocolate covered face during cooking.

After giving the graduates their diplomas and flowered leis, we had some snacks before going outside to play with the parachute one last time.



It was during this time that I was able to talk to some parents who also have kids transitioning to kindergarten at the same school Raquel is going to be attending. We exchanged phone numbers/email addresses and plan on getting our kids together over summer break so they will stay familiar to each other.

Great job, Raquel! I'm so proud of my little Rock Star! :)



One side note: Raquel has been off of the Prednisolone (as her neurologist instructed), and has remained seizure free since the day she went into the hospital on May 16th. She is happy, playful, and very engaged in activities. Such a nice way to start the summer months!!

An Unexpected Hospital Visit

Remember how I said that Lamictal can cause a pretty severe allergic reaction in an extremely small percentage of those taking the medication? Well, guess what happened? Those little patches on her hand and chest turned into a full body rash over the weekend of May 14th. That was her last day of this new medication, and Sunday the rash was even worse and she was showing signs of a lot of distress. On Monday morning, I called the neurologist as well as her pediatrician to get her checked out.

Ironically, Dr. Mower called right before I left to take her to the appointment, and was pretty concerned about what I was describing to him. He said to keep giving her the Benadryl, and if the pediatrician detected hives inside Raquel's eyes or the inside of her mouth, we needed to get her to the hospital ASAP.

Of course she had blisters inside her mouth - which explained why she wasn't eating and drinking as usual. Her pediatrician called Dr. Mower a couple of times throughout her examination of Raquel, and Dr. Mower decided to admit her at Children's Hospital that afternoon. I seriously thought I'd get an antibiotic and some ointment and be on my way, so I was pretty shocked - and scared - when the admission department called my cell phone when I was leaving the pediatrician to give me her room number. But I knew that if anything was to happen, we really needed to be at the hospital instead of home.

I assumed they'd just monitor her for the night and we'd be leaving in the morning. Nurses were coming in and taking vitals every 3 hours, and the on-call doctors would come in here and there to check on her, and then Dr. Mower would come himself. Our overnight stay turned out to be 4 days and 3 nights, and I cannot tell you how happy I was when we were finally discharged.

It turned out that Raquel developed the worst kind of allergic reaction Lamictal offers, a condition called Stephen Johnson's Syndrome, which can be fatal. She was given an IV of a heavy dose of Prednisolone - which she was just previously weaned off of - because in order to get rid of the rash, steroids were needed. Ointments weren't an option - it had to be treated from the inside out. She was on Tylenol every 6 hours, Benadryl every 4, plus needed her usual dose of Keppra 3 times a day. I was actually happy after the first day when they decided to put an IV in for the steriod. I was having to give that to her twice and between that and all the other stuff I was giving her, she was becoming very aggitated and I'd have to call a nurse in to help me force it in her some of the time. Fortunately, the Benadryl made her very tired, and she mostly slept the first couple days. Giving her the oral Prednisolone wasn't clearing up the rash fast enough, which is why the IV was needed.

Of course I took pictures - they just aren't the most fun to look at. Here she is all checked in with IV in place, holding the stuffed animal Gabby brought for her to sleep with. They put this velcro cast thing over it and would just hook her up to the machine when they needed to give her the steroid. That was nice because she was able to walk around the room if she felt like it. We'd also do laps around our floor to pass the time.

Here she is kicking back with Dad.

Sleeping soundly during the day. If you look close, you can see the rash on the back of her arm. This was the worst area - and is still the last part remaining. Although faint now, it's still pretty noticable. They say that it will continue to fade over time and that there shouldn't be any scarring.

Resting comfortably at night. We were directly above the Emergency Department, but she slept right through the ambulances/sirens. And our floor was anything but quiet - doors constantly slamming, equipment & beds being moved around. I didn't sleep much, so I took pictures and played games on my cell phone.



On the positive side, Raquel has been seizure free since the day she was admitted to the hospital on the 16th. She is eating and drinking well, sleeping like usual, and doing great at school. The only change we've made is adding the Prednisolone back in her system. She's supposed to be weaned off of it again, but I've been enjoying no seizures and have kept her on a very small dose. Today I spoke with Dr. Mower about that, and he, again, stressed the importance of her being off of steroids - even at a lower doseage. He said besides the organ damage, it can also stunt her growth and cause osteoporosis, and asked me to stop giving it to her today. If seizures resume, we'll go from there.

Here's a picture Gabby took of them in the car on the way home from school. See the chubby steroid face she's sporting? Her stomach looks like that, too.



But besides the chub, she's a happy little thing. I love her so much!



Again, I find myself reflecting on why I'm in this position, why my daughter (and family) have to suffer through this, and what the life lesson is. Maybe I'm educating people through her blog. Maybe I'm finding inner strength I never knew existed. I don't know. But what I do know is that it could be a lot worse. I've thought about the families we've shared our room with throughout our stay and find it very humbling. From the tricycles on the patio with IV equipment hooked up for chemo, seeing the little bald kids in the playroom, the husband and wife learning how to sponge bathe their cerebal palsy child that just had to have a feeding tube surgically implanted, to the new mom of 5-day old twins who had one of them stop breathing. How can I possibly complain? I can't, because I'm blessed.

More Seizures, More Medication Changes

Raquel did really well adjusting to splitting up the Keppra dose once we started doing that. She seemed to be getting back into a regular routine and was still doing great in school - and not napping in class as much.

Then the Monday after Easter - when she was on Spring Break from school - the seizure activity resumed. She had 7-10 clusters of seizures that day in probably a 20-minute period. These were brief, but just kept coming one right after the other. I gave her the dose of valium as instructed, hoping this would calm her down so she could get some much needed rest. The valium stopped the seizures from happening, but besides walking a little clumbsy, did not make her tired at all. She didn't nap all day, and I couldn't get her to sleep that night until close to midnight. Good times.

She had a seizure the next morning when she woke up, but besides that, was happy and playful - until Thursday night. She went to sleep at her usual time but woke up at 10pm and wouldn't go back to sleep. A little after midnight, she had another seizure and then finally went back to sleep, although she was very restless. She had two more seizures the next day, so I put a call in to her neurologist.

Dr. Mower obviously didn't like hearing all of this and said that because she is at her maximum doseage of Keppra, it was time to start weaning her off of that and on to Lamictal. This is the medication I was hesitant to start previously because of the side effects of skin rashes (one can be very serious).

We are in week one of the weaning process, which will take a total of 6 weeks. The good thing about the Lamactil is that it is a tiny, chewable pill, so it's super easy to give to her. I can even put it in food if needed. I'm so tired of having to force the liquid meds in her. The bad news is that after taking the Lamictil for only 2 days - with a very low dose - she has developed a rash on one of her hands as well as a small area on her chest. Nothing is ever simple, is it? So, again, I call her neurologist.

Dr. Mower says that typically with a Lamactil rash, it doesn't get better over the course of a couple days - it gets worse. And today, it looks much better than it did over the weekend. What he would like me to do at this point is not increase the dose just yet, to monitor the situation over the next week and go from there. He said that if the rash gets worse, give her Benadryl and see if that clears it up. If it doesn't, then I'll need to bring her in so he can take a look at it. If it turns out that she is having a reaction to it, then we'll have to try another medication. It's pretty much trial and error at this point.

As far as school goes, she's been doing great! Last week they had a "teddy bear picnic", which was adorable. It was Raquel's first boy/girl party. :-)

Here are some pictures:



Raquel sitting contently for circle time before we went outside to play. I need to get one of these chairs - they are very sturdy and don't tip backwards like most do.



Sitting with Dad, having some juice & cookies, while listening to Miss Sara read their teddy bear story book. She like the parachute so much...



... she needed to lay on top of it!



And here are a couple Mike and Gabby took on Saturday that I felt deserve posting:



Posing with Dad in her new wagon. And, of course, big sister Gabby was there to enjoy the fun!



Modeling Dad's hat in the tennis courts.



How 'bout that hair? It's absolutely gorgeous!



My happy girl...



Her smile just melts my heart.



Taking things day-by-day, often minute-by-minute, but I'm not complaining. I was reminded by a dear friend on Mother's Day that since I was on this Earth first, my kids chose me to be their Mom because they knew I would give them what they need to learn and accomplish things in life, and to just keep doing my best and let God do the rest. She said I should feel especially honored by that. Thank you, Jodi. xoxo

Some Slight Medication Changes

Raquel had a great week at school last week. She's been seizure free at home since those first couple occurred the days following her hospital release. She's been happy and content, and seemed to be adjusting well to her increase in Keppra.

Then last Thursday and Friday, she had a seizure at school, coincidentally at the same time - between 1:30 & 2:00pm. Thursday's was very slight - one aide didn't say she'd particularly call it a "seizure" because she was responsive. But on Friday, it was much longer and she apparently seemed disoriented for a few minutes. And on both of these days she was so tired when I picked her up, she fell asleep in the car and I carried her into the house that way. So I called Dr. Mower - AGAIN - and explained what was happening. Have I mentioned how much we love Dr. Mower? Just checking. :)

What he recommended I do was split up the doses a bit. Instead of giving her 6ml in the morning and 6ml at night, he wanted me to try 4ml when she wakes, then 4ml right before being dropped off at school, then keep her regular dose at night. She's pretty much maxed out with this amount of Keppra now, so if this doesn't work, it's time to wean her off of this an on to Lamactil, which is what he preferred her going on before Keppra. But I'm stubborn and do what I feel is best for her because of side effects, and she has really responded well to the Keppra.

I started this new dosing on Saturday, and I have to say that she seems to be adjusting very well to it. She's happier and more playful than I've ever seen her. And she seemed a lot more vocal. No seizures at all over the weekend and I was concerned as to how she'd do at school. Being overly tired for her seems to trigger some of the seizure activity.

Yesterday was a great day at school and they commented on how she was being a lot more verbal and were happy to hear that. She took a brief nap after being in the motor lab (not uncommon for her), but overall had a great day. Today when I picked her up, her class was outside on the playground. I love watching her play with the other kids and parked a little bit away so I could spy on her. But I couldn't see her. Gabby ran over and asked Miss Heather where she was and we went to the classroom and found this:



Apparently this is what she likes to do when the speech therapist walks in. Doesn't she look comfortable...



... on the giant bear?



So I had to wake her up and carry her half way to the car before she fully woke up. When I got her home, she easily went down for a nap and slept for over an hour. But she came out of her room all smiles when she woke up and was ready to play. Because they know that being overly tired can cause her seizures, they are letting her rest when needed. And today she had occupational therapy and then speech along with all the other daily activities. I'm glad they let her sleep instead of insisting she go on the playground. That could've been a bit much for her today.

I'm hoping that this new medication schedule will help. So far, so good.

Getting Settled Again

I kept Raquel out of school the remainder of last week due to all the medication changes plus the seizure activity going on. I wanted to keep a close eye on her. If she has two or more seizures in one day, I have to give her a heavy valium dose for two days after, so it's important to make sure all is well. This dose is so strong that I had to provide a hard copy of the prescription (they are typically just faxed/emailed in these days), and the pharmacist had to speak with the neurologist to confirm the order. Dr. Mower prepared me for all of that though, and assured me it is okay. And he's not saying to give it to her on a regular basis - just if that happens and then to call him.

Since we've been home, she has had two seizures. One on Thursday morning and then one on Friday morning. Both were very brief - nothing like when we were in the hospital - and probably only lasted maybe 10 seconds. I definitely think the increase in Keppra is helping. In the hospital, she was very stressed by it all and Dr. Mower thinks that because she was so stressed and sleep deprived, that was triggering them. Whatever the cause, I'm just glad it happened there and am glad to have her home. She was a bit out of sorts on Thursday and Friday and had difficulty sleeping. She kept waking up and looking all around as if she was checking to see where she was. That got better over the weekend and she's pretty much back to her normal self today. I'm doing my best to keep everything calm around here. That is definitely an environment that suits her best. Me, too.

She had a great day at school today. She didn't have any trouble getting back into the swing of things, even though she was out most of last week. Her teacher and aides were so happy to see her and kept telling her how much they missed her. Miss Sara even called this morning to make sure she was okay and would be back today. I'm so blessed to have finally found an awesome class for Raquel, and am so saddened that she's only going to be in it for a few more months. :-(

So my last post was done with very minimal sleep and with a spinning head, so I've been asked some clarifying questions. I'll do my best to fill in the blanks...

First off, I was not implying in any way that it was a good thing she is having seizures. What I am happy about is that they were happening while she was hooked up to the EEG machine. This is the third time she's had the EEG done - one at home, two hospital stays - and all of those just showed abnormal brain discharges, particularly during sleep. Because she had multiple seizures during this last test, Dr. Mower was finally able to see what part of her brain was doing what, and has given her a primary diagnosis of Epilepsy, which he can now treat her for. That is a good thing. Knowing what to treat is half the battle. I think back to all the tests she's gone through, all she's endured, and can finally say that I feel a bit of relief. I know it's still an uphill road we're facing, but at least now there is a sense of direction.

So what is the treatment? Basically finding the right medication to prevent the seizures from happening. The Prednisolone she's been on did help decrease some of the abnormal discharges, but not enough to continue on it because of the severity of side effects. This weaning process is going to take 4 more weeks. If the Keppra starts to lose its effect, we will most likely move on to Lamactil. She has also started taking B6 supplements and there is a Ketogenic Diet that is supposed to be amazing - although extremely structured. I just joined a Ketogenic support group of parents using this diet. I'd like to research it a lot more before committing to doing it, but from what I've read, this diet dramatically decreases seizure activity.

And the research begins...

More Tests - New Diagnosis

Raquel continues be the sweetest thing ever. She's still going to preschool and loving it, and the teacher loves having her in class. If Raquel is sick and misses a class, Miss Sara will call at night to make sure she's okay. It's very sweet - and very apparent that they are all there to help her and want to see her continue to improve. It will be hard transitioning her to kindergarten in a few months.

The only problem we've been having with the back to school thing is that her medication makes her very tired and she will often fall asleep during class - or typically - during speech therapy. On one occassion, the speech therapist actually carried her asleep out of class and over to my car! And trust me, carrying her heavy self that far was not an easy task. My back hurts just thinking about it. Here is a picture I took a few weeks ago. I was pulling up to drop her off at school and said, all excited, "Are you ready to go to school, Raquel?!!" and then saw this in my rear view mirror...



I took that as a no.

Even though she's been attending class on a regular basis, a couple concerning things have happened that I probably should have posted about earlier but haven't. I would say this started shortly into the second week of March. I was waiting in the parking lot to pick her up when I got a call from her speech therapist about 15 minutes before class was to end. She said to get to the classroom right away, that they think Raquel had a seizure. I obviously ran to the room and found Raquel slowly walking around, and a little out of sorts. She smiled when she saw me, but I could tell she wasn't her normal self. Apparently she was doing an activity with Miss Sara and all of a sudden, started staring, her lips began to turn blue, and the shaking began. I was told this lasted about 40 seconds. A few nights prior to this, the same thing happened at home. She fell to the ground and her lips started to turn blue and she got really stiff. I did not see any visible shaking, and when I called her name a few times, she came out of it.

I spoke with her neurologist about this and the overall concensus was that since she has gained so much weight being on the Prednisolone, the Keppra doseage is now too low. When we first started her on Keppra, she weighed 36 pounds. She is now 44. So, he had me increase her dose from 2ml twice a day to 3ml twice a day, and that seemed to work - for about a week. Then last Wednesday, Miss Sara called me right after I dropped her off at school to tell me she had another seizure in class. This time, it lasted a lot longer and the shaking was more visible. Dr. Mower increased her medication again - this time to 4ml - and Thursday, Friday and this past Monday were Raquel's best days in class ever. She wasn't sleepy, Miss Sara said she was more engaged and interactive, and everything seemed to be going well. We were all pleased and feeling very optimistic.

This past Tuesday, we checked into Rady Children's Hospital for her follow-up video EEG test. This was a scheduled test to compare to the one she had last August and see if adding the Prednisolone has decreased the abnormal brain discharges. I wasn't looking forward to this test by any means, but wasn't dreading it either since I've done it before and it really wasn't that bad - just more of an inconvenience of being there so long and confining Raquel to a bed for 24 hours.

This is the only picture I took - her in the hospital gown getting ready for the technicians to hook up the electrodes you can see layed out above her head.



Last time, she was a good little patient and although she wasn't happy about the procedure and was obviously annoyed, she didn't put up much of a fuss. This time was a different story: she was MAD. Another technician had to be called in because me and the other nurse couldn't hold her enough, and she pretty much ended up screaming and crying during the entire hook up. Not at all how I wanted to start this test out. Once everything was hooked up, vitals were taken, and all the admission paperwork was signed, everyone left so I could hopefully get her down for a much needed nap and attitude adjustment. About an hour later, she was resting comfortably. I was relieved, ordered her dinner, and started to get us settled in.

Then the nurse came to take her blood pressure. I asked her not to, that she was finally sleeping, but was told that the head nurse needed it for her chart. So, she quietly slipped the cuff on Raquel's arm and started the machine. Once the cuff began to tighten, Raquel was startled awake and became very aggitated by it all. To make matters worse, the nurse was struggling with the machine and kept getting inaccurate readings even after attempting the test 4 times. When she was leaving to find another machine, Raquel's face turned red, her eyes rolled back, her body got stiff, and she started to shake for what seemed like forever. I pushed the call button and screamed for help and and when the nurses showed up and tended to Raquel, I went to the back of the room and just cried. I can honestly say that I was absolutely terrified. The nurses documented the seizure lasted approximately 4 minutes from start to finish. I should've been the one documenting the time, but - was more comfortable in the corner. The head nurse also talked into the sound microphone giving discriptions of what was happening so Dr. Mower could listen to that while he watched the seizure taking place. All sounds and images are recorded during this 24-hour hospital stay.

After the seizure, Raquel was very tired, and slept and slept and slept. This happened at 4:45pm, and at 8pm, I had to put the light on to wake her up so she could have dinner and give her the nightly meds. She fell asleep at 9pm and slept until 7am. And she slept pretty soundly. I'd know because I didn't sleep at all. I sat there and held the "help" button. Really.

When she started to wake up, I sat down with her and was giving her some cereal snacks. After a few minutes, her face again became a bit flushed and she starting staring and not looking right, and then mild tremors on primarily one arm started. Again, I hit the help button and the nurse came in and before she got to the room, it had already subsided. A few minutes later, another one happened. Again - me and the help button called for the nurse. This time she stayed with me after the second seizure stopped. While I was answering the nurses questions, another one started. She apparently was having what is called a "cluster" of small seizures. The nurse asked if this always happens in the morning when she wakes up and I really have no idea. I would like to hope it doesn't, but I'm not in her room when she wakes up like I was yesterday and typically don't wake up my sleeping children unless it's absolutely necessary.

When Mike & Gabby showed up to take us home at 1:30pm yesterday, I was really concerned that Dr. Mower would want to observe her for another night because of all the stuff going but he didn't. He came in and went over all the test results, and was very sweet when he took me aside and told me that I need to calm down when the seizures happen. Again, he had not only video but audio and could feel my panic. He said that he knew I was scared that when this happens she is going to die and that I need to realize what she has is not life threatening and that I need to calmly be there for her and help her through it. Hearing that did help. And when she started having yet another seizure - in front of Dr. Mower - I was much calmer and he was able to explain to Mike what he was seeing on the EEG screen. He then ordered up an IV for a big dose of Keppra to get her meds at a regular level then switched a few things. The EEG showed that Raquel is definitely having true epileptic seizures at times now, which is common for her LKS, and she is going to be weaned off the Pred over the course of 5 weeks. He has also increased the Keppra dose for now and we'll just go from there.

I can't tell you how happy I am to be home. And I can tell my little Rock Star is, too. So - we are all glad to be home and she has had a great day. And no seizures at all.

Off To A Great Start

I am very happy to report that Raquel did amazing at school this week! No issues/concerns from the teacher at all. What a relief! Raquel is happy to go, greets "Miss Sara" with a big smile, and gladly walks with them to class. And I'm also relieved that effective therapy has finally resumed. This week she had physical therapy (APE - Applied Physical Education) on Monday & Wednesday, and then speech on Tuesday and Thursday. Next week occupational is thrown in there somewhere.

I absolutely love Miss Sara. They were not exaggerating in the IEP about how wonderful she is just to get me to go along with the class. She IS wonderful. She seems so compassionate and sincere, and you can really tell how much she loves the kids when you watch her interact with them.

One of the things that she does is send home a little "report card" each day in their backpacks. It tells how they greeted their friends (by saying their name, making eye contact, waving, etc.), what they ate for lunch, what they did in both their large & small group activities, as well as what they made in art. That's very cool and just knowing these little things really make it easier to leave her each day.

Raquel comes home from school very tired and immediately naps for a couple hours, and then wakes up bright eyed and raring to go. I think being back in school is a really great thing. The behavior problems she was having before are pretty non-existent, so now she is able to be attentive and learn new things.

I am so proud of her! Tomorrow we are celebrating by going to the Wild Animal Park. I'll bring my camera so I can post new pictures.

Have a great weekend!

Can Things Really Be Falling Into Place?

I like to think that I'm a "cup's half full" kind of girl. I typically always look for the bright side in bad situations just because that's how I am. And that annoys a lot of people. Trust me, I know who you are!

These past couple years of dealing with Raquel's disorder have been beyond challenging. There have been countless tears and an equal number of sleepless nights. When I look back sometimes, I often wonder how I managed to deal with it while keeping a little bit of my sanity. And to this day, when things are tough, I still reflect on why I've been put into this situation in the first place and try to figure out what I'm supposed to be getting out of it - besides a healthy daughter, of course.

These past few weeks have illustrated how much we have accomplished during this time. First, Raquel had a great school district assessment before Christmas. That led to really great IEP meeting in January - the first one ever. When I typically hear the word "IEP," it felt like a kick in the stomach because I knew the process. Fortunately, I now have a different reaction. It may have taken me two years, but I really feel the district is getting the fact that I know my child best, and for that I am truly grateful.

A week after the IEP, we had our annual IPP with the Regional Center. That's the meeting where I meet with our case worker, review Raquel's previous goals and establish new ones. It was at this meeting that I realized how far we have come. So many of the behavioral goals we had in place were no longer even necessary. And it was a wonderful feeling watching Heather scratch things off her list, obviously very pleased with Raquel's progress.

Yesterday, we had Raquel's neurological follow-up. We haven't seen Dr. Mower since her 24-hour inpatient video EEG monitoring last August. Again, more good news. Dr. Mower was SO excited about how she's doing! He said that she is a completely different child. She is so calm now, so focused, so attentive. He was comparing notes from the last visit to yesterday and was literally in awe. Raquel now consistently - and appropriately - says, "What you doing?", "Me do it!", "Put it away!" Another favorite word is "Mine!" Not one of my favorites, but I love to hear her say it. And she is just babbling away. Dr. Mower put in an order for another 24-hour VEM thing (sigh) for March, and then, depending on test results, plans to start weaning her off the Prednisone. YAY!!! She has gained 5 pounds since being on the steroid, but he said that was completely normal and that she is still well with in her weight percentile for her age. He also ordered more blood work (sigh - again), so I have to get that done within the next couple weeks. And I know I'll wait until the very last day because I hate taking her to the lab. :-(

And today, we met Miss Sara - Raquel's new preschool teacher. Raquel will be starting school on Monday, and I wanted to bring her by today to meet everyone. I think this will be a really great fit. Miss Sara seems very sincere, great at multi-tasking everyone, and the kids in her class appear really sweet. Raquel will have physical therapy on Monday & Wednesday and speech on Tuesday and Thursday. OT overlaps one of those days, and then Friday is the free day where Miss Sara fills therapy time in with cooking. I'd like to be a fly on the wall for that one!

Here is a picture of Raquel checking out her new classroom. I really think she's going to like being back in school.



As far as Gabby goes, she is finally feeling better after suffering from chronic sinusitus, bronchitis, and ear infections! She's been out of school since Christmas break, but will start again the first of February when the new packet begins. She's been spending a lot of time with her cousin and "BFF", Taliah, and loves having her for sleepovers.



And we had fun making gingerbread cookies the other night - except doing it at 8pm was probably not the best idea on my part...



And today they are celebrating Tali's 5-year birthday by going to Disneyland!!! They were just a little excited to go. Gabby was up at 5:30am packing her bag. Thanks Aaron & Jessica for taking them. I love you!



Tea cup ride, anyone?



I'm so happy to end the week on such a high note. I can honestly say that I have a sense of relief right now and am feeling very, very blessed.

Have a great weekend!