A Very Encouraged Neurologist

I spoke with Dr. Mower, Raquel's neurologist, a little while ago regarding my concerns about her clumbsy walking and the bruising. He said that Depakote is known to affect both of those areas and put in the order for blood work (sigh) to test her platelet levels. Even though she is on a pretty low dose, it may need to be lowered a bit more. The blood test needs to be done before I give her the morning Depakote dose, which is usually between 8:30am - 9:00am.

When he asked me if I've noticed any changes in her and I said yes, he immediately wanted to know more. When I described the changes is in her sleep patterns - particularly at night - he was very excited and said that showed the medication is definitely doing its job and altering the abnormal brain discharges. I also told him about how she doesn't hit herself in the head, unless very tired or distressed, that she no longer is constantly moving, and that her teachers reported she is able to stay focused in activities for longer durations. He said those are behavior changes, and another really great thing. I believe the last comment he said to me was, "This is awesome!"

So, now I need to go to Children's Hospital and have the blood test done. He said there is no urgency in doing so, but, of course, the sooner the better. Once that is complete, I call his office the next day and review the results with him and go from there. It was nice to hear him sounding so encouraged. :-)

Not Wanting To Call The Neurologist

This afternoon, Raquel fell asleep at naptime as I was holding her. I've gotten so used to giving her a kiss, telling her "night-night" and putting her in bed that I'd forgotten how wonderful it is to share that special closeness we had when she was a baby. Instead of carrying her right to bed, I just held her and watched her sleep. She looked so peaceful, I didn't want to move her. Of course, I eventually did.

I'm told by some that they don't know how I do what I do in regards to Raquel. Sometimes I don't know either. She exhausts nearly all of my energy on a daily basis. And that can be really hard - especially considering I'm not just a mom to her, but also a very active and demanding 7-year old, not to mention being a wife first. I'm fortunate to have a husband who understands that if he comes home to me in sweats, my hair in a ponytail, with no makeup on, it's nothing directed at him. Either I (1) forgot and hadn't looked at myself all day or (2) just had one of those "Raquel" days.

Today when she slept, I couldn't help but think about what the future holds for us. I so desperately want to know what she is thinking and feeling. That is what eats me up inside - not knowing. I do know that she uses the majority of her words when I am present. She also saves her worst behavior for me (such as hitting me in the eye with a water bottle at close range), but can also be the most loving and affectionate little girl on the planet - when she chooses to do so.

Unfortunately, since increasing the Depakote doseage at night, I'm noticing that Raquel is becoming more and more unstable on her feet. She's very wobbly and is constantly walking into things and falling down. And, she's bruising easily. Not good. I know I need to call her neurologist but know that he'll want to do blood work and I don't want to go back to the "testing" stage. I promised her we were all done with tests for awhile, and realize now that I wanted to think that the most.

And guess who I heard from today? The school district. The program specialist returned my phone calls from about a month ago. I'm still amazed at how they portray themselves as having Raquel's best interests at heart. She told me that she spoke with Raquel's teacher and he thought everything was fine and didn't know why I'd be calling. Um, hello??? When I said that she wasn't getting the therapy she needed, she became very defensive - until I gave her some specifics. She asked if I was "told" this or "knew" this, and once I said that I "witnessed" it, and was thinking about getting an inter-district transfer, the tone drastically changed. But she said she was the only one there over the course of the summer (not true) and that we couldn't meet until after school starts back up in fall (again, not true). But, I don't really care and I didn't force the issues. I'm going to continue to push therapy in other options over the summer. Again, not convinced this school setting is the most appropriate for my girl. As it stands right now, she will resume school in mid-August in the ortho class she was in before.

I have also been communicating with a parent of a 7-year old boy diagnosed with LKS. We are in the very early stages of this, but it's really nice talking to someone sort of going through the same thing and able give me advice. I'll continue to seek out additional support groups.

Trying To Find A LKS Support Group

I was pretty excited today to learn of a Landau-Kleffner Syndrome support group. Turns out, there are only 5 members. I know it's a rare disorder, but c'mon people! There's got to be something going on out there!! But at least it is a starting point.

But then it made me wonder. What if there's not? What if there are people going through the same thing as me without anywhere to turn for advice, reassurance, and most importantly - support and encouragement? It makes you kind of start to put things in perspective and realize why you may have been given a specific deck of cards in the first place. Is this the point where I need to step up to the plate and instead of searching for something, actually DO something that can help other people? And if so, how and in what capacity?

I do know that if I knew then what I know now, a lot of things would be different and I need to figure out a way to let parents know how to force the system to work. I've said it before that you have to push-push-push, and I don't mean lightly.

Unfortunately, my request for additional respite hours (I get 4 hours per week) was denied due to budget cuts. I was really looking forward to another 4 hours added - as I was told would happen earlier this year - but I guess need to be happy with what I have. My case worker today told me that hours have been reduced for many, which makes me very sad. Respite is key to keeping your sanity. At least for me. When you are dealing with a special needs child - and a very demanding one - you really do need a chance to remove yourself and recharge. They will re-evaluate again on her 4th birthday and hopefully I'll get an increase in hours then.

I was also given the contact info for another school district so we can do an inter-district transfer. Hopefully they will be more responsive than what I've been dealing with in ours. I've also spoken with my insurance company and found out that they cover both occupation and speech therapy if she's not getting her needs met through the district. Looks like she may be seeing Karin (her previous OT) in the very near future...

Learning Some Lessons

On Father's Day, I realized the importance of being prepared when it comes to Raquel's allergies. Although she did have allergy testing done several months ago and was prescribed the EpiPen because digesting cashews could make her go into anaphylactic shock, I guess I've been pretty laid back about it. I've simply made sure that she stays away from nuts. That should work, right? Yes, if she's only allergic to the nuts. But the allergy test did not test for every single thing out there. Most environmental stuff was ruled out, as well as our beautiful Annie Dog, but Sunday was a different story.

She was a happy little girl all Sunday morning, and was playing and laughing the entire 45-minute drive to my in-law's house. In fact, the girls were carrying on so much that I suggested we play the silent game to see how long we could all go without making a sound. That game, unfortunately, never lasts very long in this family. Especially when you put Gabby into the picture. She really thinks she was given her name because she talks so much. :-)

As soon as we arrived at Mike's parent's, he immediately started giving her some snacks, one being smoked salmon, which she absolutely loved. But it was really close to her nap time and she started to get pretty fussy right away, so he gave her to me to get to sleep while he left with his dad and Gabby to go visit neighbors. Right when they were leaving, I asked Mike if she hit her lip because the corner of it appeared to be swollen. He said no, that she was fine, and off they went. Then a few minutes later, I asked my mother-in-law if her mouth looked swollen. She said no, but I was still really concerned. And then it happened: her face started to swell - mostly her mouth and cheeks - her eyes got all red, and then some hives appeared. When she asked me if I had her EpiPen - and I didn't - I also realized I didn't have any Benadryl on me either. Really not a good thing at all.

I didn't particularly freak out because this appeared much different than the cashew incident, but once I noticed the hives developing on her arms, I headed to the closest drug store for some Benadryl, and she immediately started looking better once I gave it to her. Unfortunately, she remained very irritable for the rest of the day and was just really out of sorts. So... I've stopped taking the allergy thing lightly and now carry the Epi-Pen wherever I go - along with some Benadryl. Just the thought of possibly ending up in ER last Sunday is horrifying.

I've also learned the importance of having some one-on-one time with Gabby. She and I have been constantly butting heads lately and I've been thinking it was just her being 7. That's probably part of it, but today Mike came home at lunch to watch Raquel so Gabby and I could go to Toys-R-Us. She was a completely different child. She wanted to hold my hand and stayed close by my side throughout the store. It was really nice. I didn't realize how starved for my undivided attention she was until today. We will definitely be resuming our "date night" very soon.

And finally, today I realized why I had more "boy" friends than "girl" friends growing up: Girls are mean to each other and I can't believe how early it starts! The groups, the "clicks", the "You're wearing THAT?" stuff is truly unbelievable. To see how these neighborhood girls are to each other and how they treat Gabby is really a bummer. I'm always calling the parents and sound like a broken record saying, "If they can't be kind to each other then they shouldn't play." I think it's going to be a long summer!

And Just A Couple More...

Today, Jennifer had fun playing dress up with Raquel. She has finally learned the trick to keeping things in her hair: ignore them. As soon as you say, "Look how cute!" or make any kind of acknowledgment, Raquel will immediately take them out. Gabby took these pictures earlier, and I just had to add them.







Happy Friday!

Had To Add Some Pictures

This morning, I briefly stopped by work, and when my friend and helper, Terri, met us at the car, she immediately said, "Oh my gosh! Look at her hair!" as soon as she saw Raquel. I glanced at the back seat - still not able to completely shake that final 24-hour EEG image - and thought she had done something unknown to me during our short ride to work. What Terri was referring to was how much her hair has grown out and how big she is getting.

Earlier this morning, I had that same realization: I was getting her dressed, grabbed a pair of hot pink stretch pants, and was puzzled watching her walk around the living room shortly after. The pants just seemed loose on her for some reason. A few minutes later, I looked at the tag and discovered that I had put Gabby's hot pink stretch pants (hey, every girl's gotta have a pair or two, right?) mistakenly in Raquel's drawer and she was wearing them instead! And they pretty much fit! Gabby is only about a head taller than her now. She really has grown a lot.

So, I thought it was time for me to put some new pictures on her blog. This is how most of you probably still picture her looking. These were taken by Cari during her final ABA session on her third birthday in mid-January:





And these were taken last night before bedtime in front of our friend's house.







She's definitely got some curls going - and LOVES to have her hair brushed. I'm sure her Samoan cousins are proud. :-)

It's Officially Summer Break

Today was Raquel's last day of school. Tomorrow, technically the last day, is a minimum day so she would only be there for a little over an hour. And since the past two days weren't the best, we felt today should be it. It was hard saying good-bye to her teacher Jeff and Nurse Janice. I thanked them for everything they've done for Raquel, and for the encouragement they have given me. I still hear them saying, "Bye, Raqi!" and not knowing whether or not she'll be back with them again next year. They always told me that she was the highlight of their day.

As I drove away, a really sick and alone feeling hit me - kind of like what happened when her in-home therapy ended. I got so used to having everyone in the house on a daily basis, and once that was gone, it was just me dealing with Raquel's needs the best I could. And sometimes alone can be a really scary place.

So on to the summer months ahead and what I need to accomplish during this time off:

• Getting Raquel re-evaluated by another school district to see where the more appropriate classes for her are located.
• Getting speech and occupational therapy started ASAP - whether in-home or in another setting.
• Researching LKS in depth. This is such a rare disorder - with only 160 cases being reported from 1957 - 1990. More posts on this to come...
• Finding a way to educate families going through the same thing - to give them encouragement and tell them not to give up and to make sure they give their child a voice. Somehow, I need to do this in order to make Raquel's voice heard loud and clear. People need to understand that they can make the system work with a lot of effort.
• Oh, yeah! And go to the beach, the mall, do picnics, play ball - and have some much needed down time!!! :-)

Happy Summer Break, everyone!

Last Week of School

Wednesday is Raquel's last day of school until the end of August. Since I chose not to enroll her in summer school due to high class sizes, I'll be trying to find fun activities to keep her busy. She definitely likes to get up and go in the morning.

I continue to fight with the district, so this summer I will have her assessed by another school district - and start the whole process all over again. As much as I hate to move her away from her current teachers, we all know that this isn't the right class for Raquel. Yes, she's getting one-on-one attention for the most part, but therapy is non-existent, and her being surrounded by silent kids is not helping her communication skills. Regardless, it will be a sad day on Wednesday when we say good-bye. Teachers that deal with special needs kids are truly special themselves. It can be so hard with Raquel sometimes, and I always think of her teachers wanting to put themselves in the position to help her and the others and make a difference in their lives. I don't think special ed teachers get the credit they deserve. Their big hearts are not taken for granted - at least not in this house.

Over the last couple of weeks, I've learned about more and more options being available to me. I've also learned that just because certain individuals are associated with a district doesn't mean they necessarily agree to district politics. And yes, I did say politics. When I voiced my concern about the district failing to return my phone calls, I was told that was considered "breaking down the parents," meaning that if you are rejected over and over again, you eventually get sick of trying. But the main thing I've learned is that I have to be Raquel's biggest advocate and push, push, push - for everything. No information is volunteered, but if you educate yourself and ask the right questions, more and more resources suddenly become available. And I'm happily given the information - I just have to inquire first...

Another Neurological Follow-Up

Raquel's next follow-up appointment with Dr. Mower is scheduled for August 4th at 9:30am. He will basically be observing her and getting our feedback on how she's reacting to the Depakote. In November, he wants to do another 24-hour EEG, so my little Smurf will be returning in another 5 months. The purpose of this EEG is to determine whether or not the brain discharges have changed or subsided. At least I know what to expect this time, and hopefully won't drop the device as soon as I walk in the door.

Raqi had another great day. I'm beginning to think that she's turning into a new child on me, but again, don't want to get too excited because everything is subject to change at any given time. She continues to be happy and content as the days go on, and is very playful - especially with Gabby. She wakes up very rested, and is talking more. Her tantrums or meltdowns are seldom, and completely different in intensity. When I told Dr. Mower's assistant all this, she said she'd make sure he received this information, and that he would be very pleased.

Her teachers are also noticing changes in her during school. She is engaging in activities for longer durations, and overall appears much calmer. But she doesn't seem sedated, which was one of my biggest concerns. I didn't want a lethargic 3-year old laying around the house, but she is still very active - just not constantly moving.

Let's see what tomorrow brings...

So Far, So Good

I am very happy to report that Raquel is 2 for 2 with school this week - after being out for nearly two weeks! I know that tomorrow is definitely a new day, but her temperament seems to be a bit different these days. I don't think I've ever seen her so happy. Again, trying not to get ahead of myself with the Depakote, but part of me really thinks that she is finally able to get some rest now that she's on it. Naps are still lasting around 2 - 2 1/2 hours, and she appears to be sleeping very solid through the night. The only thing different is that she wakes up really hungry in the morning - more so than usual - so I have been feeding her as soon as she wakes up.

After doing some research on her summer school program - which is only for the month of July - I have decided not to enroll her in it. I don't feel that it is a safe place for her due to the high class volume and low teacher ratios. I really wanted to keep her in a consistent routine, however, this class isn't the right place for her. So now I've got to find some fun things to do over the course of the summer.

The main concern right now is her therapy. I am beyond unhappy with how it has been handled by the district. For starters, in the IEP from January, it states that she will have two 30-minute sessions of speech therapy per week. I think she's seen the speech therapist a handful of times - all of which there wasn't even a session because they "don't get along", whatever that means. So, she basically has not had speech therapy since she started school - and speech therapy is a critical component for treating LKS. The IEP also states that she will have 30-minutes of occupational therapy each week. Not happening. In fact, Leigh, her OT, has only seen her ONCE. Completely not acceptable. And it's also not acceptable that my calls don't get returned. One day, I promise you, they will realize that I won't go away. I am very fortunate to have my educational consultant on my side, giving me great advice and feedback. She is constantly trying to keep me grounded and gets a lot of my venting. But because of her, I am able to keep my composure when dealing with the district. Thank you, Beverly. You really are a wealth of information and I appreciate having you.

I am told that in-home therapy (covered by the state) is pretty much non-existent once you transition to the school district system. But my take is that if the district isn't doing their part, and she's not getting what is recommended - and documented in writing and signed by everyone who made the recommendations - then I have no choice but to pursue other options. And I'm learning that more and more options are available to me than what is presented. I just have to continue being Raqi's biggest advocate, holding my ground - and not going away.