Steroids = Huge Appetite

This is Raquel's 3rd week of being on Prednisone, and I've got to say that the side effects I was the most concerned about (restlessness, irritability, sleep issues, etc.) have not happened as of today. In fact, I was so paranoid about starting the new medication, that I couldn't even do it. After walking into an argument Mike & I were having about me not giving her the meds, my wonderful respite worker asked if she could do it. I said yes and left the house in tears. It is really hard giving medicine to a child that can't tell you what they experience from it. And Christy is awesome and basically a nurse and knows how to deal with side effects when and if they occur.

The main side effect I am experiencing with the Prednisone is her appetite. I cannot get enough food in her. She's grown a pot belly and her face is getting round. Fortunately, I have a healthy food/fridge policy in our house so she's not eating a bunch of junk. Just yesterday she enjoyed a plate of raw cauliflower! But she seems to always want some kind of snack or she gets pretty aggitated. And I mean aggitated.

I've been so fortunate to have found this LKS support group and have learned so much from all of their experience, support, and advice. Many talk about the steroids and how it briefly stunts growth in height. Some kids have gained weight, but their shoe size and height did not increase again until after the steriod is eliminated, and then it readjusts. All of this is very strange and frightening to hear, especially considering Raquel has been getting taller and taller on a regular basis. And now I wonder if this will be ending for her steriod duration. But I'm so happy to have found some people going through the same process that we're going through and appreciate their calls and emails. Just knowing they check in to see how I'm doing is a big relief and keeps me going, and I don't feel so alone.

I have noticed some positives from the Prednisone. She definitely seems to be trying to initiate conversation and is way more vocal, even if I don't understand exactly what she is saying. She still clearly understands words and follows simple instructions. She is very happy and calm, and her walking is more stable. She will often use 3-4 word sentences when answering my questions, and again, is the absolute cutest thing on this planet. I'll post pictures soon. Sorry Grandma H - I know you wanted them before now. :-)

Have a great weekend everyone and I'll start posting again soon!

The Cup Is Half Full

I can honestly say that for the vast majority of the time, I do a really great job at keeping it together. I continue to stay optimistic, be Raquel's biggest advocate, and push, push, push for answers, treatments, etc. But I also have the days when it all sort of gets to me and I start to wonder what her uncertain outcome will be. Those days are tough, so I try to force myself not to have many of them.

But sometimes I can't help it. And that's kind of where I've been this week - a bad case of the blahs. Don't get me wrong, nothing has happened to make me lose faith. I think it's just natural to have these feelings sometimes, as much as I hate it.

On the upside, I've joined a Landau-Kleffner Syndrome support group and am getting a wealth of information about certain medications, treatments, specialty doctors, what has & hasn't worked, - and outcomes. Everyone I've spoken with says the light exists at the end of the tunnel, but as one mother stated in an email: "...the effort extended on our daughter's behalf traveling through the LKS darkness was monumental." I completely get that. It is definitely an uphill battle, but one I will win. I guess this is where my persistent and stubborn traits come in handy. I refuse to give up, and am hoping to find a LKS Neurological Specialist somewhat close to get another opinion as far as treatment goes. Sacramento is as close as I can find right now but I've only just begun the process.

As far as outcomes go, the vast majority say things definitely start to change around puberty. It's basically all about finding the right meds and producing speech before that. One mother has a 21-year old daughter who is a senior in college with a 3.7 GPA. Another has a daughter who is a senior in high school and uses sign language to communicate. But both are extremely functional. And these two particular cases were originally diagnosed so long ago, LKS was unheard of. I'm confident that we've advanced in treatment/therapy since the 1990s and more options will be available to help Raquel. It's just a matter of finding the resources. But the cup remains half full, and I'm determined to do whatever it takes.

Good-bye Depakote!

I am very happy to report that Raquel is completely off Depakote and on to a much more mild anti-convulsant called Keppra. Things continue to be positive, and she is clearly out of the Depakote fog she's been in. Her checking out "episodes" are very rare, and she continues to make progress.

She is becoming more vocal, more engaged in daily activities - and just more functional, even though the progress is still gradual and day by day. It is very apparent that she clearly understands what we are saying and she is now coming up to us and trying to initiate a conversation. She appears less frustrated and seems much happier overall.

The only negative thing I have to say about Keppra is that it did bring back some of her unruly behaviors. But I am able to deal with them much better now by knowing how to react and how not to, and they are less intense than they previously were. They are also becoming less frequent as she continues to adjust to her medication.

And she truly is the cutest thing ever created. She's got curls galore, and a smile that just melts your heart. And no, I'm not being partial because she's mine! :-)

Next on the agenda is adding a very low dose of Prednisone, a steroid, to the mix. This supposedly helps produce speech in kids with Landau-Kleffner Syndrome. She will only be on it for a short period of time - probably 6 months - and then more tests will be done. I haven't started her on it any sooner because I wanted her to fully adjust to Keppra to make sure I could determine what side effects are caused by each medication. And her neurologist said to take my time and to add it when I felt it was right. It's feeling right about now, so I will start her first dose tomorrow morning so I can see how she reacts to this new med over the weekend and then go from there.

I continue to stay very optimistic. The other day I told her I loved her and she responded: "Love you!" which was the first time she has ever said that to me. And yesterday, Gabby called to her and she responded - kind of annoyed - with a "What??!!" She also has a new favorite song: Three Little Birds by Bob Marley.



Hope everyone has a great weekend, and that my little girl handles the new medication okay. I'll keep you posted.

No Depakote - Day 2

I am really trying not to get ahead of myself here, but I have to say that Raquel is like a new kid. Today is only the second day of her being completely off the Depakote and I've already noticed some very positive things. It's like she's coming out of a fog.

I cannot remember the last time I have seen her so happy, so playful, so content. No behaviors whatsover - just a bunch of smiles. And today Gabby told me that she thinks she's getting her little sister back. :)

I have noticed a big decrease in Raquel's "episodes." In fact, today is the first day I have actually taken her out of the house during the 10am - 11am time slot in months because this is when they are usually the worst. She got a little bit out of sorts at one point, but that was extremely brief and she came right out of it. Strangers didn't approach us to see if we needed help, and we were able to blend in with everyone else at the grocery store. I'm sure this seems pretty trivial to some of you reading this, but to me, it was a pretty big hurdle to cross. Again, trying not to get too encouraged and to take it day by day. I'm just pleased to see positive changes so soon - and hope and pray they continue and that I'll have another happy blog post over the weekend!

Final Week Of Depakote

This is Raquel's last week of being on Depakote. Actually, Wednesday night will be her last partial dose so come Thursday, she will be solely on Keppra. I am hoping and praying that she will do much better on this medication.

I've already noticed some changes since the weaning process began. She's definitely not as groggy and is a bit more stable on her feet. She still has these "episodes", but they aren't as dramatic as before, although I am still troubled by her having them at all. She doesn't seem nearly as anxious, but definitely has her moments. Once we began the weaning process, she started waking up at 3am (again) and her sleeping patterns got off a bit. But now we have a soft light in her room at night - she previously liked it very dark - and the light seems to help. Old behavior problems also returned, which the neurologist warned me about. Depakote was supposed to be helping tame the bad behaviors, and once we lessened the dose, the hitting, scratching, biting, head butting returned. Combining that with the sleep issues, the last week or so hasn't been a bed of roses. But now, for the most part, she is back to her regular sleeping routine and her behaviors are managable - unless she's tired, hungry, or just in a bad mood. :-)

I'm also noticing more functional play. And she wants to participate in playing instead of just watching others do so. When our sitter brings her year and a half daughter over to our house, Raquel clearly models what she is doing. You would assume she would try to copy Gabby because of all the time they spend together, but I think it helps to have someone smaller and acting more at her level. Gabby tends to be all over the place doing a million things at once, and I think that often overwhelms Raquel. When Gabby will intentionally sit down and play with her one-on-one, she seems to do much better in that regard and sucks up all the attention Gabby is giving her. You can really see Raquel sparkle when Gabby gives her her undivided attention.

Raquel is also listening more and clearly understands what we tell her. She is jabbering more and trying to initiate conversations. And she's trying to vocalize answers to my questions. It will be interesting to see how this develops.

As far as the Prednisone goes, I'm not starting that immediately after the Depakote is over with. I want to wait a couple weeks to see how she's handling the Keppra so I can determine whether or not she is having adverse side effects from that before adding another medication. Her neurologist is fine with that, and we have our next follow up appointment with him on October 13th.

The journey continues...

Video EEG Complete

I am very happy to report that Raquel's 24-hour inpatient Video EEG Monitoring test is complete and she is home and resting comfortably. Here are some pictures:

Gabby being a little nervous waiting for the EEG technicians to come in. She stayed right next to Raquel until they asked her to leave.



Here she is in her hospital gown waiting with dad while they got the equipment in order.



Here's what the electrodes look like. They get glued all over her head - and there's a whole lot of them.



It doesn't hurt when they do this. She was mad that she was being confined - and it does take a little while to hook them all up. A nurse wrapped her in a sheet to keep her arms from moving, and I had to restrain her legs. Then they wrap gauze all over her and top it with a gauze cap.



Introducing my very tired Little Smurf.



She eventually did take a nap ...



...but only for 15 minutes. Even though she had all that stuff on, she was a real trooper the entire time. I had to keep her confined to her bed for the full 24-hours. She wasn't able to walk around, not even in the room. Keeping her centered in front of the camera wasn't that easy at first, but I ended up laying down with her and watching television, reading books, etc. and I think she got very used to having some quiet time with Mom. We ordered room service, had people from the playroom constantly checking on us to see if we needed any toys, etc., and a lady from the healing center even came in to play the harp.

This is what the VEM looks like. To the right was a live video shot of Raquel. To the left was the EEG being displayed. This test allowed Dr. Mower to observe Raquel's movements while observing the EEG at the same time to make sure her physical activity is consistent with her brain activity. It was all very fascinating.



Dr. Mower came to check on us yesterday at lunch, as well as this morning to sign off on our discharge papers, discuss the test results and make some medication changes.

Here she is getting the electrodes taken off. I told you there were a lot! And even though they tried to get all the gunk out of her hair and even sort of washed it, boy does she stink! It will probably take a week of shampooing to completely rid the smell.



Besides stinking and having a red mark on her forehead from one of the electrodes, she's back to her normal self and obviously very happy to home, able to walk around, and get back into her normal daily routine.

So, what were the findings? Well, I guess there's good news and bad news. The good news is that she is not having seizures. The bad news is that she is still having abnormal brain discharges at night while she is sleeping. This is pretty consistent with Landau-Kleffner Syndrome (also called epileptic aphasia). These discharges don't appear to be less frequent than they originally were when we did the in-home EEG over a year ago. That basically means that the Depakote she's been on has not helped in this regard, and, since I am having issues with her being on it in the first place, we are weaning her off of it and on to another one and then adding a very low dose of Prednisone, which is typically what is done when treating LKS. Prednisone is often attributed to producing speech. We have a follow-up with Dr. Mower in 8 weeks, then have to do the 24-hour VEM all over again in 3 months so he'll be able to tell if his treatment is working as it should be.

I'm not really happy about having to do it all over again, but it definitely wasn't as bad as I thought it would be. It's just more of an inconvenience. And the overnight stay really put things into perspective because we were in the Hem/Onc department and there were all of these bald little kids walking the halls and being pushed around. Raquel may have looked like a smurf for 24-hours, but I'm fortunate I was able to lay in bed with her and watch tv instead of sitting next to her in the chemo room with an IV. That was brutal to watch. One of the little boys was just a year and a half old, and he came to say good-bye to her when we were leaving.

Again, more answers, not all of them good, but I continue to remain positive and am happy we are making medication changes. The cup is still half full, remember?

VEM This Monday

It seems like we've been waiting forever to have the 24-hour Video EEG Monitoring test done at Children's Hospital. I'd be lying if I said I was looking forward to Monday. What I'm looking forward to is getting the test over with. I've talked to several people who have either had the test done themselves or who had to take their kid in to have it done. Sounds like it is far from being a picnic but regardless, it is something that needs to be done and we'll deal with it the best we can.

The hospital called earlier today to confirm the appointment and to remind me that they would prefer her to be sleep deprived. Of course THEY would like that. They aren't the ones attempting to keep her up all night then dealing with her crankiness from the lack of sleep. I told the nurse that I would try, however the medication she is on makes her extremely drowsy. They would like Raquel to be asleep for a good portion of the EEG, and I really don't think that will be a problem if she's well rested going in because of her being on the meds. Food is provided (for her), but they recommend that I bring her usual snacks and some of her favorite items to play with so things stay as normal as possible. There will be a television in her room and I can bring some dvds to play in addition to that, but they really want her confined to her bed as much as possible and not wandering around.

A few of the reasons for doing this test are:

• to distinguish epileptic seizures from episodes that may mimic epileptic seizures;
• to characterize the type or types of seizures that a child is having, and
• to localize the part of the brain where the seizures are coming from.

In Raquel's case, her neurologist is not convinced she is having true seizures, but the in-home EEG we did awhile back showed that she was having abnormal brain discharges, particularly at night. These discharges were similar to Landau-Kleffner Syndrome, and the VEM will show whether or not she has this.

We should have some more insight early next week as to what is making Raquel tick. Hopefully it will show that she's not having any seizures at all and can be weaned off the medications completely. If it shows she does need to be on an anti-convulsant, we will pursue other meds that are more suitable for her so she can stop suffering from all the adverse side effects.

Input From The Behavior Therapist

Last week, our behavior therapist came when our respite worker was here so he could make sure that things are staying consistent and that everyone is on the same page. He put a couple procedures in place, one that I particularly knew Mike would have a hard time with, so today he came to specifically meet with Mike and review everything.

I've touched in the past about how the hubby is extremely emotional when it comes to all three of his girls. He always tries to fix everything, and has a difficult time watching any of us, particularly Raquel, struggle. If he is outside working or in another room and hears her carrying on a bit, he immediately comes to her rescue. That is not in her best interest, and although he's been told this over and over by practically every therapist we've been fortunate enough to work with, I think he really needed to hear it coming from a guy. And Mike, our therapist, did a great job explaining it all to him. And this time, I think Mike, my hubby, really listened.

One of the things Mike worked with me on last week was how to reduce the inappropriate behaviors. By catering to these, we are teaching her that when she acts up, she gets rewarded by getting our undivided attention. I have definitely grown in this area with help of many behavior therapists, and when she throws herself down on the floor and starts kicking, I easily tell her to knock it off and go about what I was doing. But I learned last week that although I don't acknowledge them physically, I am being WAY too vocal with her, and by doing so, I'm still reinforcing the behavior. I may not be sitting on the floor with her, but she still wins by getting my attention with words.

So last week, I started doing things a bit differently. If I was interacting with Raquel and she did something aggressive such as hitting, scratching, etc., I immediately put her down or walked away from her - without saying, "Ouch!" or "No hitting!" or "That's no!", or even making eye contact for that matter. And this was a real tough one because your automatic reaction is to be verbal. But by not reacting vocally, I can honestly say that these aggressive behaviors have decreased over the week.

The other thing Mike implemented last week was Raquel following instructions. This teaches her who is the boss. He demonstrated this activity by doing clean up. He first told her to sit down, which she eventually did after about 30 seconds. Then he asked her to put some toys in their container. We can never verbally give the instruction more than 3 times, but can use non-verbal cues such as tapping the floor for sitting. The goal is to "wait it out" until she does what is instructed. This shows her that even though she is very stubborn, I am more stubborn than she is and will win. When she follows the instruction, she is rewarded by praise, high fives, etc. I can do this activity anytime I give her instructions, and I didn't realize how often I did just that throughout the day with a variety of activities. And if I don't have time to "wait it out", I help her follow through with the instruction then go about our business. Again, great results with this one. After just a couple days of telling her "arms up" to help her undress herself before the bath, she will now walk over to me with her arms already lifted once she sees me start running the water, or immediately do it once instructed.

Mike was very pleased with my feedback and said that if I consistently keep doing both of these activities, I will see amazing results in just a short amount of time. It will not only eliminate the aggressive behaviors, but will also teach her what appropriate behavior is and will help in all areas - including her interactions in school.

I am very thankful to have the guidance of another wonderful therapist. We meet again in two weeks. I'm pretty confident that I'll have more success stories to share with him then.

Blood Work Complete

I finally got a call back from one of the neurologists and was told I could go to the lab and have the blood work done before her first dose instead of before the second. I went yesterday morning, and was fortunate that the lab was open even though it technically was a holiday. And even more fortunate was that only one other family was there when we arrived, and they were just finishing up. I literally signed in, answered a couple of questions, and was called before I could even take a seat.

I'm a wimp when it comes to having blood drawn from Raquel and struggle with holding her down. I have to be the bad guy enough just giving her the meds 3 times a day! They obviously noticed my hesitation and said I could wait outside, which I gladly did. After a few moments of hearing her cry, out she came with a Care Bear band aid on her arm, and she reached out for me as soon as she saw me. Mission accomplished.

I did forget about Dr. Mower requesting a urine sample as well, and she was not cooperating in that regard due to lack of fluid consumption. Now I have to collect the sample myself and then drive it back to the lab within 2 hours. Once that is done, all tests are complete until the EEG in August.

I did get info regarding the 24-hour inpatient video EEG thing. It really doesn't sound like too much fun. I have to keep her up until midnight the night before, then wake her up at 4am and keep her awake until we check in at 9:15am. And no sleeping in the car on the way down there. Once there, we have to take the shuttle to the EEG building, get the thing strapped to her head (with only 4 hours of sleep in her), and then I guess get placed in a room where she can be monitored for the next 24 hours. Good times. Hopefully I'll get a bed, too.

Implementing Picture Rewards

Mike, our behavior therapist, came by today to explain how he wants me to begin implementing the picture rewards. The pictures we are starting with are Moose from Nick Jr, our dog Annie, the wading pool, and my car. Mike took all of these pictures and cut them in half. He then gave her 3 items and asked her to put each of them inside a bucket. When she did that, he gave her half of the Moose picture. He waited a few minutes and then had her do it again, praised her and then gave her the second half of the picture. Then we put Moose on tv so she could watch it. I can use these reinforcers however I want - in a therapy type setting like we did today with work, or I can give her the first half as a reward for any type of good behavior. I decide what the reinforcer is based on what I feel like doing, and I also control the time frame between her getting both pieces. It's all about Raquel associating good behaviors with getting preferred items, and me being the one in charge. Consistency is key, so Mike, Gabby & my respite worker will need to be on the same page.

What I can't do with this reward system is take away the first piece once it's been given to her if she starts to act up, and I can't give her a piece as a reward for following my directions if she was attempting a forbidden behavior. For example: her trying to turn on the stove and me telling her not to. I can't give her a piece for not doing it because then she'll know that all she has to do is go to the stove, wait for me to say no, and then not do it and get a piece. And trust me, Raquel is a smart, manipulative little girl. She would have that one down in NO time!!

Next week, we will review todays procedures, make changes if needed, and then he wants to start addressing the behavioral issues. Today, I had to give her the meds right when he got here and she unfortunately started having her reactions to them and got very tired and woozy. She did really seem to enjoy working again and I am so happy about that. I also think that her having a male therapist is going to be a great thing. She's so used to associating the work with the ABA Team of wonderful women we had on a daily basis. By coming weekly, it's like she has a new playmate. And although very familiar with ABA, he's trying to make it a bit different than that even though it will still be very structured. At one point today, we were sitting on the floor and he was explaining the reward procedures to me. Raquel came and sat right with us and watched us talk and had a big smile on her face. Typically during therapy, she would throw a fit when I would engage in a conversation with the therapist since she wasn't the focus of the attention. I was proud of her letting us talk today.

Raquel is still having these episodes. I know that Dr. Mower said I shouldn't freak out, but that's easy for him to say. It continues to be extremely difficult to watch - to the point where Mike told me I shouldn't take her inside stores anymore. And they are concerning. When complete strangers come up to me and ask if I need help, there is a concern. So, I called Rady Children's Hospital this morning and asked for us to be on the cancellation list for the 24-hour inpatient video EEG. The sooner this gets done, the better. I don't want to wait until August unless I absolutely have to. Plus, if Landau-Kleffner Syndrome is ruled out and she's given an Autism diagnosis, she qualifies for more services.

I also left a message for Dr. Mower to call me regarding the blood tests he has written up. He wants these taken before her second dose which is typically around 2pm. If you're familiar with the lab at Children's Hospital, you know that it's not a place that you can ever zip in and out of. Because her medication is an anti-convulsant that needs to be administered at a specific time, I called the lab to see if there was a way to get an appointment. No such luck. Instead, I was told that I needed to check in 2 hours before I would give her the meds - their typical lunch time waiting period - which puts me at the lab at noon!! Not a good thing, especially when you factor in the parking situation as well. I am hoping that I can do this test before her first dose. If so, I can be there when they open at 7:30am. If not, I am going to see if he can transfer the order up here to Palomar Hospital instead.

Last weekend, Mike and I attended a 100-mile car run that was put on by the San Diego Panteras Club. The proceeds this year went towards the Wounded Warriors Foundation. We overheard the main guy telling someone that next year, it looks like it will be about Autism. When we were leaving, we went up to his wife and told her about Raquel. She immediately introduced us to a member of the club that has a 13-year old Autistic son. We exchanged contact information and he said I definitely need to be in contact with his wife, that they've tried everything, almost had to put him in an institution because he was so difficult, but now he's doing much better. It's great when you are able to meet others that have gone through and overcome some of the challenges.

Here's a picture we took the night before the race when Mike took Gabby to Crusin' Grand.

Mike wanted boys at first but has seen first hand that girls enjoy to hike, fish - and love the hot rods, too!

Neuro Follow-Up Complete

This morning, we had a rather lengthly follow-up appointment with Dr. Mower. His first comment to me after greeting us was, "You've had a pretty difficult spring." Yes we have. But hopefully that just means we'll have a really great summer. The cup is still half full, remember?

There weren't any tests to review this time so we basically just talked after Raquel's initial exam. We stressed our concerns about these "episodes" going on, and then one happened while we were there. He watched intently and then told me not to be scared by them, that they resemble autistic like behaviors and he doesn't feel they are seizures. Even the staring spell that I thought she was having he said wasn't one because she was blinking and would easily redirect her focus. He said he thought she was just aggitated and reacting to that. She has lost weight so her meds may be off and her levels could now be too high, which could be the cause of this so tomorrow I have to take her back to Children's Hospital before I give her the second dose and have blood work done. Then I'll talk to him on Thursday and see if he wants to make any adjustments medication wise.

He was very happy to hear the positives that we are noticing: improved sleep, less frequent headaches, more vocals, better focus, etc. and doesn't want to change medications at this point.

He does want us to do the 24-hour inpatient video EEG monitoring, so that has been confirmed for August 16th at 9:30am at Children's Hospital. Dr. Mower or one of the other neurologists in his group will be administering the test. Once the test is done, he said we'll know if she has Landau-Kleffner Syndrome (LKS)/Epileptic Aphasia. He also requested that they do blood tests for a couple of very rare metabolic diseases. It sounds like if these tests come back negative and the video EEG shows she doesn't have LKS, then she may be given an Autism diagnosis.

Mike did mention that he's concerned about her having a bad reaction to the Depakote, that both his sister and aunt couldn't tolerate it. Dr. Mower said if the video EEG in August shows the abnormal brain discharges she was having are gone, then other anti-convulsant meds would do the same thing. At that point, if we are still having concerns and feel she is acting overly medicated, we can start trying to find a better fit medication wise. Again, the blood work tomorrow will tell if her levels are too high or not. It could be as simple as that.

I feel a bit relieved knowing that the episodes don't need to freak me out. Having Dr. Mower observe it and then look me straight in the eyes and tell me that I don't need to freak out was a very reassuring thing. He reminded me of all the tests that have been done and how so many things have been ruled out. And he stressed therapy, therapy, therapy. And the more the better. In-home behavior therapy will resume next week. Now I just have to work on getting speech and occupational going again.

Neuro Follow-Up Tomorrow

I normally get a bit nervous before going to see Dr. Mower. I don't exactly know why - he's an awesome doctor and we couldn't be more blessed to have him. I guess it's because he's a neurologist, and I don't like Raquel needing to have one of those. But, such is life.

Today, I'm feeling a bit different. I am looking forward to the appointment and hoping to get some answers. Although I continue to notice improvements in Raquel - she's talking more, sleeping better, is much calmer, and playing more functional - these "episodes" are continuing and still very much freaking me out. Mike actually filmed one occasion and I plan on bringing the camera to play it for Dr. Mower in the morning.

Since Mike is home a bit more these days, he's been observing the episodes and quite honestly, having a very difficult time with it all. He's very emotional when it comes to his girls, especially the one that can't tell him what's wrong so he can try to fix it. Last night, after a long drive home with Raquel from his parent's house, he got upset, stressed, concerned, and then just mad about the situation. He said that we've turned her in to a prescription drug baby, and that was hard to hear - especially considering that I'm the one administering the meds, or giving Gabby the stuff to give to her.

So I'm looking forward to tomorrow. I need to find out what is going on and what our options are because what is happening is clearly not working as it should be. We tried to wean her off the Depakote and she ended up in ER. Now she's back on it, with full doses in her, and I'm still not liking it what I'm seeing. She's not getting therapy, she had to be pulled from school. This is all getting very old. It's a good thing she is so cute. Every time I think I'm going to go off the deep end because of it all, she gives me a smile that melts my heart - and that gives me the strength to keep going. I love you, Raquel!!

Liquid Meds Are A Good Thing

After continuing to struggle getting full doses of the medication in Raquel, I, again, called the neurologist for some much needed support. Conversations with Dr. Mower seem to be on a weekly basis at this point. I'm very fortunate to have him so readily available.

I was actually nervous about having our most recent phone call because I've spoken with him so much since the ER visit and thought he would more than likely suggest changing the medication. Instead, he put in the order to try her on a liquid form of Depakote - something I didn't even know existed. I started giving her this last Friday and have to say that it is so much easier than the capsules. Even though it requires her to have one extra dose a day, each dose is only 1/2 of a teaspoon - something easily given by spoon in one gulp. I no longer question whether or not she's gotten her full dose. And the other day while shopping at Trader Joe's, one of their employees came up to me and commented on how great she looked. It's nice getting feedback from people that not only know what is going on for her but also see her on a somewhat regular basis and can notice the subtle changes.

Here are a couple pictures taken on Sunday. Mike thinks that every 4-year old girl needs to cruise around in a '56 Cadillac convertible.





She obviously agrees.

And here they are eating raspberries in our neighbor's yard. I swear we live next door to our very own farmer's market!

Next on the agenda is our neurology follow-up on the 21st. The 24-hour inpatient video EEG at Children's Hospital has been scheduled for August 16th, but at this point, I'm not sure Dr. Mower will want us to do this until her medication levels are stable for quite some time. I guess I'll find out next Tuesday.

Taking It One Day At A Time

Raquel had a great week after her ER visit earlier this month. Once she got past being overly medicated that initial week, the second week was wonderful - no focals at all and she was my happy camper, eating well and getting back to her normal self.

The week after Mother's Day, the girls got the flu. It was impossible to get any meds in Raquel because she'd either throw them up or refuse the food in the first place because she didn't want to eat. Because of this, her medication levels dropped very low again and the focal seizures started to re-occur. I spoke with her neurologist, gave her an extra dose of meds, and that seemed to get her, again, back on track.

But Raquel continues to be a bit stubborn. It is getting harder and harder to get the meds in her. We are constantly having to rotate food items - the capsules can't be put in liquid and they can't be in anything that she has to chew. She is sick of yogurt, ice cream, pudding, applesauce. We've even tried baby food desserts. Sometimes Mike will literally have to hold her down and force it in her if it's been a very trying day for me. But if she gets all of her meds as prescribed, she does great. When she's only getting a half a dose here and half a dose there, we notice obvious changes. And since the medication costs over $100 per month now, we can't go around wasting the stuff.

Sleeping is back to normal, with her going to bed at the regular time and waking up bright-eyed and raring to go. And she's talking more and more, and clearly understands more and more, too.

We have our next follow-up with neurology on June 22nd, and the 24-hour video EEG monitoring has been scheduled for August 16th. I'm pretty nervous about that one - don't know exactly how I'm going to keep her confined to a room for 24-hours, but have a lot of confidence in Children's Hospital and have to trust that they know what they are doing and will help me get this done.

As for Gabby ... she continues to be the best big sister ever and really steps up to the plate and takes care of Raquel when needed. The seizure part really freaks her out, as it does me, but she's learning to deal with it better over time. Yesterday was her end of school party at The Wave Waterpark. She had a blast - and I had a blast seeing her have so much fun with her friends!

Here she is with the biggest snowcone ever! I swear the thing was as big as her head when she first got it...



Playing in the freezing cold water (I didn't go into that pool - she was mad at first)...



And here she is posing for me in the car on the way. I love you, Gabby!! I am so proud of you.

Looking forward to the long holiday weekend. Mike and Gabby are fishing today at Canyon Lake...

She's definitely Daddy's girl! :-)

Impetigo, Strep, Focal Seizures & An Ambulance Ride to ER

What a fun week we've had.

Last weekend, the rash on Raquel's face continued to look worse and worse so Monday I took her to the pediatrician to find out about getting some kind of ointment. Mike was really sick with strep throat so I wanted her checked out to make sure she wasn't developing the same thing. Turns out that she has strep induced impetigo. We were given antibiotics plus a prescription ointment, which really seemed to help almost immediately.

I also picked up the brand name Depakote and began giving Raquel this instead of the much cheaper generic version. Again, we began to notice changes pretty quickly. She stopped looking at what I was trying to feed her and it was much easier giving her the meds. She also started waking up at her usual 7am time slot instead of sleeping in until 9:30am. It seemed like she was getting back to her old self.

Well, not exactly. I continued to notice these weird episodes where her eyes would kind of roll back and she appeared to "check out" for a few minutes. After speaking with the neurologist last week and him telling me that based on all of her test results, he thought it would be very unlikely that she'd be having true seizures, I just kind of dealt with it. But these episodes seemed to be getting a bit more frequent and gave me a very uncomfortable feeling.

Yesterday, I got her out of the bath around lunchtime and was changing her on the couch. An episode started that freaked me a bit, to the point where I called Mike to come help me. By the time he came into the living room, Raquel was sitting there watching television. He told me she was fine, that her body is adjusting to less medication and causing certain reactions.

Then it happened again last night in front of Mike. This time, it lasted longer and Mike thought she stopped breathing and was ready to start CPR but then she kind of snapped out of it. He took her outside but she was still out of sorts and very pale. He told me to hurry up and call 911. The paramedics were here within a couple of minutes and I rode with her in the ambulance down to the Emergency Room at Children's Hospital.

They immediately started an IV, gave her Ativan (I think) to calm her and did some blood tests as well as an EKG because her heart rate was really fluctuating. The EKG showed her heart was perfectly fine, but the blood tests showed that her Depakote levels were extremely low, and because of this, was triggering her to have focal seizures. ER spoke to her neurologist (not Dr. Mower but one in his group who was on call), and he wants us to stop the weaning process immediately. They gave her a double dose of Depakote through the IV last night, which took 30 minutes, then they monitored her for another hour after that to make sure her vitals were still okay. At 1:30am, we were finally discharged.

But she was so exhausted. She hadn't slept the entire night - even after getting the Ativan plus the Depakote through the IV. I thought for sure she'd sleep on the way home but not a chance. I finally got her to sleep close to 3am and expected her sleep long and hard, but she woke up 7am instead. She continues to be extremely medicated and is unable to keep her balance and falls down alot, so we've been confining her to a blanket surrounded by pillows.

Instead of eliminating the Depakote, the neurology department wants me to increase her morning dose to two capsules instead of one, and keep the nighttime dose at two capsules - until I can sit down with Dr. Mower and come up with some kind of game plan. The follow-up paperwork states that I need to see him within one week so I will call him first thing in the morning to schedule the appointment.

I hate seeing her so drugged but I guess that is better than her having the focal seizures. It was a very long night but at least we have a few more answers. We know that her heart is fine, her electrolyte levels are great, and now know why these seizures are happening in the first place. And I'm just really glad she's home and not still at the hospital.

Video EEG Monitoring

Yesterday, after coming home to an obviously stressed and concerned respite worker, I called Raquel's neurologist again to get some much needed input.

Because the concerns I have now are pretty much the same prior to the weaning process, he is not linking the two together. I asked him if he thought she could possibly be having true seizures now and he said that was highly unlikely, that he feels she is just reacting to something when she has these seizure like episodes. I will be emailing him a picture of her rash as well as a video of her having one of her "things." Again, just love her neurologist. He makes himself so readily available and definitely takes my concerns very seriously. He always acts like he has all the time in the world to talk, and makes sure he's answered all my questions before we get off the phone. That means a lot.

Dr. Mower did put in a request for Raquel to have a Video EEG Monitoring done. This is a 24-hour inpatient test that will be done at Children's Hospital. She will once again become my little Smurf, but this time she will stay at the hospital and be video taped at the same time. I will, of course, be there with her during this process. The test will allow the doctor to see how she is acting and then compare it to what is going on in her brain at the same time. Unfortunately, we are on a waiting list and probably won't be able to have this done for a couple of months.

In the meantime, he's wants to eliminate the Depakote and replace it with something called Lamictal. At this point, I don't care what we use to wean her off - I just want her off of the meds. It breaks my heart to see her suffer and I am constantly asking myself how much more she must endure.

Glad we've made it to Friday. This morning, she woke up with a little bit of a sparkle in her eyes. Let's see what today brings...

In-Home Behavior Therapy Resumed

Today we met with Mike, our new in-home behavior therapist. I think he's going to be really great. He came a noon today, and Raquel was overly tired and wanting to nap so he was able to observe a lot of the behaviors that are to be addressed. Each week, Mike will be giving us certain procedures that we will need to be consistent with throughout the week.

This week, my homework assignment is to implement a "Reward System" of sorts. The starting reinforcers are going to be: (1) Moose & Zee on Nick Jr (since they are one of her favorite things), (2) the swing, (3) the car, and (4) water. We will obviously be adding additional items as we develop the system. Mike wants me to take pictures of each of these items - similar to the PECS we were using - but to cut each picture in half like a puzzle. When Raquel does a behavior that she should be rewarded for, such as playing quietly, picking up toys, tapping my leg for attention, etc., I will give her one piece of the puzzle based on the activity I feel like doing, NOT what I think Raquel wants to do. When she is rewarded with the second piece for good behavior, we watch tv, play on the swing, go for a ride, or splash in the water. Mike specifically did not want "water" to be taking a bath and instead wants to keep that as part of our morning or bedtime routine. Again, whatever is the most convenient for ME.

This reward system is supposed to help Raquel learn what behaviors are acceptable and which ones aren't. And we are very soon only going to be acknowledging good behaviors. As Mike was observing me interact with Raquel during one of her episodes, I was saying, "Gentle hands" when she was hitting herself in the head. He said to no longer do that and instead to simply hold her hands preventing her from doing it, and to not make eye contact or use any vocal cues. By acknowledging what she was doing was reinforcing her to do it because she had what she wanted - all of my attention.

It's nice having some in-home help again and I look forward to meeting with him again next week and getting more input and ideas.

Back To The Herbalist

As some of you know, I am a huge advocate for herbal medicine. I personally see my herbalist/iridologist if I have a concern before seeing my regular doctor. Herbal therapy has helped me through some really difficult times - miscarriages, carpel tunnel syndrome, depression, and anxiety attacks just to name a few.

At the very beginning of this process with Raquel, I did go with my gut and see my herbalist. I was told that Raquel was "switched", meaning she had a reversed polarity. As someone who was treated for this 15 years ago, I was not surprised, especially considering that I was switched when I gave birth to Raquel due to a stressful pregnancy (Mom being terminally ill and passing away shortly thereafter). And if you're switched during pregnancy, you typically pass this on to your unborn child.

What is reversed polarity? It's a disease of the physical electrical system. It effects the way your body deals with mentality, immunity, and just basically your overall general health. Keith Smith - my herbalist/iridologist says that: "A shift in the polarity of the body changes the way electrical conduction flows through the cells. Our body has a North and South Pole, just as the Earth. When something causes a shift in our system, our axis also changes, thus your poles have reversed, and your body cannot operate in the most perfect way."

Last Saturday morning - after dealing with a pretty horrific day on Friday - I decided to take Raquel to the herbalist to hopefully get something that would calm her down and help her deal with the Depakote withdrawals. The very first thing Keith asked me was if she was having problems with her bowels. I found that odd, but told him, yes, ever since the start of the medication nearly a year ago, Raquel has been plagued by chronic constipation. He said that the bumps around her mouth and on her lower cheeks tell him that her bowels are trying to self-regulate.

He then tested her and I was told, again, almost two years later, that she is switched. Talk about going full circle. How does the saying go? Hindsight is 20/20? I will not beat myself up for going the route I did. I am definitely relieved to have had the tests done and so many things ruled out. But I am going to keep her on the herbal program, have started a journal to document changes/patterns in behavior, and Keith will be monitoring her every 5 weeks. We don't see her neurologist again until July.

Keith did give me an herb for calming and I have to say, since giving it to Raquel, she is not suffering as much. The weekend was much better than last Friday, although she is still not sleeping like she should be. Last night I was up with her from 12:30am - 4:45am. That makes for very long days!

Tomorrow her new behavior therapist comes. That should be interesting...

Very Aggitated

I have to say that so far this weaning process really sucks. And today is only the 3rd day. It is very apparent that she is experiencing withdrawals of sorts and it is extremely difficult to watch. It kind of brings me back to the very beginning of therapy when I had the most behavior hours because she was so hard to manage. At least now I have learned specific techniques to help her, but her "tantrums" for lack of a better word, are clearly not behavioral this time and instead appear to be reactions. She is very uncomfortable and requires constant attention. It is extremely hard to console her - and I'm pretty much the only one she wants during these trying times.

Here is a picture I took early this morning at Petco.



If you look closely, you can see spots on her face. She has broken out in a funky rash from her nose down. She doesn't appear to be bothered by them, but it certainly bothers me. I don't know exactly what is causing them but this morning when I was giving her the medicine, she kept spitting it out and I kept scooping it up and putting it back in her mouth. It is extremely important that we make sure she gets all of her medicine, even though we are tapering off. A sudden deprivation of it can cause full blown seizures, something I certainly don't want to provoke. When I was done, I noticed that she had white granules on her chin and around her lips. I'm wondering if the skin contact could be creating these bumps. It's quite possible because I know the medicine needs to be in food items that Raquel swallows and not chews. If she chews the granules, it can cause an irritation in her mouth and on her tongue.

On the positive side - the cup is half full, remember - I heard from a behavior therapist and he is coming on Tuesday at noon to meet Raquel and discuss the type of in-home program I'd like to get started. It sounds like very good timing...

Weaning Off The Depakote

After speaking with Raquel's neurologist last night, he recommended that we start to slowly wean her off of the Depakote. We will give her 1/2 of her nightly dose for two weeks, then eliminate her morning dose for two weeks, and then remove her final nighttime dose altogether.

Even though I thought my lists of questions and concerns were pretty substantial, he didn't seem to feel anything was particularly alarming, and simply recommended weaning her off of the medication so we monitor changes in behavior. He didn't feel changing to a generic form of the drug would make that big of a difference because she isn't having true seizures. He said the doses weren't too close together like I thought they might be, but did say that very well could be why her sleep patterns have changed. My other concerns could certainly be side effects from the medication, but we won't know for sure until the meds are removed from her system.

Although I thought Raquel showed progress at the start of taking it almost a year ago, I've honestly felt recently that the vast majority of changes we were noticing were contributed to her maturing in age. And from day one I have been extremely concerned about side effects of the Depakote - both short and long term - especially considering the fact that she can't tell me what she is physically or mentally experiencing. And giving her the medicine has become very difficult. She looks intensely at what I'm feeding her to see if she can spot the white granules in her food, and if she does see them, she pierces her lips tightly together and shakes her head no. I guess that is her way of telling me she doesn't like how she feels once she takes it.

I kind of feel like we have come full circle with this and now are back to square one - with the exception of having more answers. I'm grateful tests are done, as difficult as they were, and am grateful that so many conditions have been ruled out based on her normal MRI and blood screens. All we know right now is that she has an abnormal EEG for some reason, which resembles a rare neurological disorder that can possibly be outgrown.

The weaning process began last night, so now we have to take things one day at a time. I'm planning on having her back in school on Monday.

Hi-Ho, Hi-Ho, Back To The Neurologist We Go

For these last few weeks, Raquel has been a bit out of sorts. She was on Spring Break for two weeks and was supposed to go back to school today, but Mike and I decided last night to keep her out until we can at least talk to Dr. Mower, her neurologist, about the changes we are noticing. A lot of these things tend to happen when she is tired or upset, and since she spends a good portion of her time at school upset, we didn't feel it was in her best interest to be there right now.

I guess about 2 or 3 weeks ago, I began noticing big changes in her sleeping patterns. One night she woke up at 1am, bright eyed and bushy tailed, ready to start her day, which was very annoying since I had no plans of starting my day that early! Instead of going to bed at her usual 8 - 8:30pm time slot, she's been staying up until 9:30 - 10:00pm and then sleeping in much, much later. But even though she is sleeping in, she continues to nap at her regular time and sleep just as long as she normally does. Naptimes are still a really good thing!

Then last Friday, we were at the mall and I feel she got over stimulated by some rowdy kids in the play area. Typically when this happens, she will immediately sit down and act scared. This time, she walked over to me and when I picked her up and put her on my lap, she started throwing herself back, doing weird things with her mouth and jaw, and closing her eyes. It lasted very briefly and once we left the play area, she had some snacks and was back to her regular self. But she has continued to do this sporatically since Friday, and I would be lying if I said I wasn't freaked out by it.

This morning, we took her to see her regular pediatrician to rule out a cold. She's had a low grade fever and her throat sounds very raspy, so I wanted to make sure antibiotics weren't needed. Her doctor thinks she may have some kind of virus because of the gurgling sounds but said her throat isn't inflamed, her ears look perfect, and her lungs sound clear. She didn't think a sinus infection was going on because she doesn't have a runny nose, but admitted that she looked like she didn't feel 100% and to give her plenty of fluids and treat the fever with Tylenol.

Last night, I wrote out some questions/concerns for Dr. Mower so I wouldn't forget them when he called. The concerns are:

• Depakote dosage times. I've changed it from giving her morning dose before school at 7:30am to once she gets home around 11:30am because of the medication giving her a headache. But by doing so, this means her nightly double dose is only 8 hours later, and something in the back of my head says that Dr. Mower wanted the morning and evening doses 12 hours apart.
• For the past 1 1/2 months, the pharmacy has been substituting Depakote with a generic brand. When I asked my previous insurance why I had to pay $97 per month for her medication - instead of my $15 copay - they told me that Dr. Mower instructed them not to substitute Depakote for the generic form. I need to confirm this.
• Sleep changes are a concern. She doesn't appear to get into a deep sleep at night anymore.
• Twitching - restlessness. When I hug her, I often feel her shaking on the inside. She has a very hard time sitting still, even when eating. She seems very stressed and aggitated.
• Balance issues. She's very unstable on her feet and clumbsy. She no longer tries to climb into the bathtub or on the couch. It appears that her depth perception is off.
• Obviously, the mouth, jaw, eye thing is a huge concern.
• She seems pale. I don't like her coloring at all.
• I need to verify what pain medications are okay to give her with Depakote.

It's really hard because I don't know what side effects she is experiencing. I know that on the bottle it says it can cause drowsiness and dizziness, but Raquel can't tell me what is happening to her and as a mother, it is an overwhelmingly helpless feeling having to play the guessing game when so much is at stake.

But again, I continue to look at the cup as being half full and know that she was put here in my life to teach me something valuable and important. And I also know that I'm a stronger person because of this.

I'm hoping to hear from Dr. Mower very soon and get some much needed answers so my girl can continue making progress.

Good End To The Week

When I picked up Raquel from school today, the aide walked her over to me and said, "She had an awesome day!" That was very encouraging - especially considering that on Wednesday her teacher said, "Boy, when she gets mad, she can really get mad!" when she was making the handoff. I definitely prefer to hear "awesome" over "mad".

At this point, I still don't know if Raquel is getting more out of school or if I am by being able to talk to parents in a similar situation. I think it can go either way right now. Raquel still loves going in the morning and happily walks to class, but she continues to be stubborn and wanting to do things her way. She refuses to talk to her speech therapist, which is very frustrating, but I probably wouldn't talk to her either. She's very hard to understand - even for me, a very fluent communicator. She's making progress in both APE and OT, and apparently getting more and more comfortable around the therapists she's seeing in these areas, so that's a good thing. The cup is half full, remember?

Regardless, it's great for Raquel to get out of the house and be around other kids and in a school setting. It's also good for me to be with the other parents - particularly the ones "new" to the system - and provide them with encouragement and support. One couple I met recently was terrified about having a respite worker come to the house and take care of their son. I shared some of my positive experiences with them, and they have agreed to try it out. Their first outing once a respite worker comes? They - husband and wife - want to go grocery shopping together. I thought that was really sweet, knowing how the simple things can mean so much in a situation like this. Another mother I met has been using her weekly respite to take her 7-year old daughter to the park so they can have a few hours of alone time.

Today I finally got the paperwork in the mail that I needed so Regional can schedule the behavior evaluation. Once this evaluation is completed, in-home sessions can hopefully resume again. It's just a long process. And I'm still on the waiting list to have her speech sessions done through Rady Children's, in addition to what she's getting through her school.

For me, I continue to notice big improvements in Raquel. She's more expressive vocally, and is clearly understanding speech more and more. The other morning, she didn't want to get up and Mike said, "C'mon, Raquel! Time to get ready for school!" She answered back plain as day, "Don't want to!" and layed back down in bed. She eventually did get up and we managed to get her to class just in time.

She is also working really well with our respite worker, Christy. The paperwork I received today still lists my monthly respite hours at 16, so the reduction hasn't taken place as of yet. I'm hoping they had a change of heart and are keeping them at 16 hours, but only time will tell. Christy tells me every week how much improvement she sees in her. We are going to start a binder to keep track of her progress because it's so easy to forget new words used or changes in simple things - especially for me since I am around her so much. And it will be nice to have something to show her neurologist at our next appointment.

Here are a couple of recent pictures from the "feed" store. They love going there to see all the baby animals - and, of course, Gabby has to make every moment the most dramatic.

Have a great weekend!

Don't Mean To Be Neglecting Raquel's Blog...

... but looking at the date of my last entry, apparently I am. I don't know why I haven't been posting like usual except to blame lack of time. But that's just an excuse. So let's see... what's happened since we last "spoke"?

I met with the Regional Center for her yearly IPP. That went really well, with the exception of finding out that due to continued state budgets cuts, I'll be losing one of hour of respite care per week. That may not sound like a lot but it really is - especially considering I typically use my respite care to go to work. I don't know when the reduction will officially start, but right now I'm thinking around June. I've also started the paper trail to resume in-home therapy once again. Regional will be doing another psychological evaluation on Raquel in the next couple of months. During this evaluation, a behavior therapist will be present, and is the person who is responsible for setting up what type of in-home therapy program Raquel will have. Regardless of the type of service, I'm hoping to have a familiar face work with her once again.

We also had the neurological follow-up with Dr. Mower. He continues to be pleased with Raquel's progress - especially the fact that she understands language. He says that understanding communication is the precursor to expressing it. He doesn't want to make any adjustments at this point medication wise, and won't schedule another 24-hour EEG until she's been on Depakote for 2 years. Unless we feel that Raquel hits a plateau of sorts, he doesn't want to add Prednisone to the mix and will monitor how she does on Depakote in conjunction with regular speech therapy. We will continue to see Dr. Mower every 6 months. I just love our neurologist. After sitting through IEP meetings where she's so poorly assessed, meeting with Dr. Mower is truly a breath of fresh air. It's very apparent that Raquel is more than just a number to him.

As for school, well...she still really likes to go. She walks right over to her "friends" and happily walks with them to the classroom. But what happens IN the classroom continues to be a challenge for her teacher. When I picked her up one day this week, her teacher stopped me as I was leaving and said that eventually Raquel will learn that she's been teaching a long time. :-) I know Eva said she was up for a challenge - I just don't think she realized how much of one she was getting. She ended the week on a very good note yesterday, having a great day and a lot of fun during their school Valentine's Day party. Now she's off until Wednesday due to the holiday.

Thanks for your continued thoughts and prayers. Raquel is getting better every day because of them!

Happy Birthday, Raquel!

It's hard to believe that my baby turned 4 years old today. It seems like only yesterday we were taking these pictures:







And then these:





And then the ones taken during all of the tests.

Coming out of anesthesia during the MRI...

... turning into my little Smurf for the 24-hour EEG...

... and becoming a pincushion during her allergy screen.

And now, here we are, four years later - just like that. It's amazing to think of where the time has gone. But at least the majority of tests are done, and I can display happier pictures, like their most recent school photos.

This is Raquel's very first school picture taken a couple months ago during preschool. We had no idea it was picture day, which is why her hair is such a mess, but I think the toussled look goes well with the pink tie-dye shirt!

And here's Gabby's 2nd Grade picture. She is getting way too big these days and is turning into such a little girl so fast that it catches me off guard sometimes. She continues to be the best big sister ever, oozing with patience and love for Raquel. She is also becoming more and more protective of her sister.

Raquel was a happy girl when I picked her up from school today. The assistant said she's doing good, but not off to as great of a start as the previous week ended. Oh well, everyone has their moments. Mike came home at lunch so we could celebrate her birthday then, since he'll be working late tonight. We opened a couple of gifts, played games, and decided to save the cake for after dinner. Gabby is looking forward to helping her blow out her candles.

Happy Birthday, Raquel! I love you! Keep making Mommy proud. :-)

Annual IEP Complete

Yesterday afternoon, we had Raquel's yearly IEP with the school district, current therapists, and current teacher. It went okay. Amanda, the district psychologist and Eva, Raquel's teacher, are clearly trying to make this work, and I really appreciate that. But sometimes I feel they are the only ones that even hear a word I say. All of them continue to rush to judgement, assume they know Raquel better than her own parents, and look at me like I'm crazy when I contradict anything they say.

Yesterday I brought both Raquel's PECS book and therapy notes with me because Eva wanted to look through them. At one point during the IEP, Eva was reviewing her therapy notes that were taken. She stopped, got a bit choked up and said, "I can only imagine how hard this must be for you to sit here and listen to all of this when you know what she is capable of doing." I thanked her for acknowledging that. The binder doesn't lie, even though the school district gives it no merit. It's like I've made the notes up or something.

Again, I heard the APE therapist say she can't throw, can't do this, can't do that. She doesn't particularly believe me when I say otherwise and said, at one point, that I must be "confused" about what I was seeing. I guess playing catch with her and Gabby is all just part of my imagination. And yelling at them for jumping on the bed isn't happening either. Regardless, I do like Rachel, the APE therapist, and think it's great that even though most of the kids are only required 30 minutes of therapy once per week, she sees them twice per week because she's on campus two days overlapping the kids.

Speech therapy is becoming more of a challenge and I am apparently going to have to pay for sessions on my own. The new district therapist has such a strong accent, I can't even understand her. I was speechless listening to her explain Raquel's goals for 2010.

Last year I signed the IEP thinking it was a requirement. This year I chose not to sign all categories because I am not in agreement with the district's assessment. I did signed for the IEP goals, but wrote in my notes that it was only based on district observations and not her true ability.

Mike attended the IEP with me this time and I talked to him about it this morning. I was really proud of how he handled it. At one point, when I was clearly aggitated about a district person doubting what I was saying (because she hasn't seen or heard it with her eyes), Mike spoke up and reminded them that we have a really fantastic pediatric neurologist that 100% disagrees with Raquel's prior IEP, that she's had all of these tests done under his care, and that he feels this is a treatable, seizure related, neurological condition that has no impact on her IQ. I was really glad he was there. Don't get me wrong, I can definitely hold my own, but after a couple hours of going back and forth, it gets pretty old. And it was nice to have a hand to hold when things were hard to hear, even though I didn't agree with what they were saying.

I think a lot of the difficulty in class is simply Raquel adjusting to this type of school setting. It is much more structured than last year, the kids in her class are loud, and she's required to attend to tasks the class is participating in. And Raqi likes to do things when she feels like it.

But on the positive side, Eva and Amanda really stepped up to the plate, put together a Behavior Support Plan over the holiday break, and it was nice to finally get that implemented. If we are consistent both at school and at home, things will definitely improve.

The even more positive side is that Raquel had a really great week! When I picked her up today, the aide told me that she had another fantastic day - no behaviors, no problems - nothing. What great news!

I'm very relieved the IEP is over with. I'm very pleased the Behavior Support Plan is finally in place. And I am very happy with how she did in school this week - especially coming off of a long holiday break.

Next Tuesday, my little angel turns 4. Can't believe it! Then Thursday I meet with the Regional Center and will find out about how/if/when I can resume in-home behavior therapy. Then the following Tuesday, we have our next follow-up appointment with Raqi's neurologist. Looks like 2010 is off to a busy start!

Welcoming 2010

When I look back at all I experienced in 2009, it's no wonder it felt so exhausting. It was. And I hadn't really thought about it all until yesterday afternoon when a very familiar face came for a visit - Janine, Raquel's former ABA supervisor. Although we've kept in touch since Raquel's last session on her third birthday, this was the first time we've seen each other since her in-home therapy ended.

Raquel was eating when she arrived, and I was very curious to see how she'd react to her being back in the house. Remember, when the ABA therapy first started, Janine was intentionally the "bad guy" and Raquel used to start crying as soon as she walked in the door. Raquel stopped eating when she came inside, and wanted out of her high chair. As soon as I put her down, Janine said, "Hey little buddy!" and Raquel looked at me and started crying. She clearly remembered Janine and associated her with "working" - almost a year later. Once we explained that she didn't have to work, she calmed right down and became very affectionate with her, giving her lots of hugs and kisses.

And both girls really enjoyed playing with Janine's dog, Escrow, who made himself right at home!

Janine couldn't believe how big Raquel has gotten - and what a head of hair she has! She was also very happy to see how I continue to hold my ground and fight the system that couldn't possibly make things any more difficult. She was also pleased to see how I am still able to stay consistent with Raquel and detach myself emotionally when I know she is just trying to get my attention, which happened yesterday when Janine and I were talking. She started a mini-tantrum that neither of us acknowledged, even though Raqi tried repeatedly to interrupt us. When I told her to knock it off, that we were talking, she eventually stopped and started playing with Escrow. But sitting on the floor with Janine listening to Raquel carry on certainly brought back a lot of memories.

Since I deal with Raquel 24/7, I don't always see the changes or how far we've come until it's pointed out to me. And yesterday I was reminded of it. I remembered at the start of ABA, how I couldn't even be in the room during therapy because I was so distracting to her. I remembered how the session sometimes only lasted ten minutes out of the two hours they were there because she was tantruming the rest of the time. I remembered the beanbag, the squashes, the tent, playing the song - over and over again, fighting to keep her sitting at the table, etc., etc. And I remembered all the tears I shed watching her struggle in the sessions and just praying for it to end. I thought about all of this quite a bit after she left.

I know there is still work to do and that we have a tough road ahead of us. I'll never deny that. But yesterday, thanks to Janine's visit, I was able to put things in perspective a bit. Although I will continue to fight the system in 2010, at least she is in a class with walking and talking kids, with a teacher willing to do whatever it takes to make this work. For that, I am truly grateful. I still question whether or not this is the best placement for her, but at least it is a good starting point. I know she is getting therapy, I know they are working on academics with her, and we have a meeting this Thursday to implement a Behavior Support Plan. And, because of the LKS diagnosis, Raquel may qualify for in-home therapy again, which would be wonderful.

As for me, I have promised myself that 2010 is going to be the year that I start doing things for me again. Me time is no longer going to be optional - it is now a requirement. And I've already registered for my kickboxing camp (http://www.turbokick.com/) this summer, thanks to a very supportive husband.

Janine and I talked about Raquel's "song" yesterday and how every time she hears it she immediately thinks of Raqi. Here's how Jason did it on Sesame Street the other day. Raquel loves when Elmo comes in (when Toca would!) and she just laughs and laughs and laughs.



Happy New Year everyone! Go Outdoors! :-)