Friday, November 20, 2009

Wow...a really bad blogger!!!

Caitlyn's school picture--2009

I can not believe it has been almost 4 months since I last wrote!! It has been a whirlwind!!

The school year started out really rough for us this year. I will spare you the details, but let's just say it wasn't pretty, and we fought like the dickens for our little girl. In the end, we seem to be one step ahead. If you are a parent of a child with special needs, I urge you to learn your rights, and learn your daughters rights. It is my feeling that school personnel assume parents don't have a clue! We have to all unite and prove them wrong!!

Caitlyn got her first cold of the season in October, and I'm happy to announce that with the aide of the 7 lbs she has put on, she pulled through the cold like a pro!! Getting a G-tube was a tough decision for our family to make. In the end, we had to make a decision based on what was best for Caitlyn's health, and our families quality of life. I am sooo glad we made the decision to go ahead with it!!!

Since my last post, we found out some very exciting news!!! At the end of April, Caitlyn is going to be a big sister!!! We are nervous, but excited to be adding to our family! Caitlyn seems excited when we tell her about it, as long as we don't bring up her having to share her room...She gets a little upset about that!

I promise to try and update more often!!

Sunday, August 09, 2009

Bad Blogger

Well I sure feel like a bad blogger...Today is August 9th, and it has been a month since my last post. A lot has happened...where shall I begin?

Caitlyn had her G-tube put in on July 10th. She did great, and handled it like a pro! I didn't do too bad, either. This huge life altering event was hard to do...I struggled sooo much with this decision. We have been feeding Caitlyn with the tube for just over 3 weeks now...She gets 1000 calories of formula throughout the day, plus whatever she eats orally. I am happy to report that in those 3 weeks, Caitlyn has gained about 2 lbs!!! I doubted if we were doing the right thing, but now I know we did! The stress on our family has significantly dropped during meal time! The first change I noticed even before weighing her was that her sunken eyes are gone!! She is fully hydrated!

On July 17th, just one week after her surgery, we had the opportunity to go to the Wiggles concert!!! A wonderful man that lives by as works at the arena, and gave us tickets. When Eric thanked him, explaining that Caitlyn had just had surgery a week before, and this was her first outing, and it meant the world to her, the man must have been moved. He is getting us circus tickets, and tickets for a couple of other kids shows this fall!! How wonderful!

We are hoping that school will start on September 8th, without any issues. Our school district contract is up, and we are waiting for news of a start date, and settled contract. My baby needs to get back to school...We pray that both parties realize these are trying times, and settle quickly so that the students can all get to school on time!!

This past weekend we had an AMAZING time at camp Prime Time. This camp is soooo cool!!! We attended two nights away from home with other families from our county at no cost to us. We had to pay a $20 deposit, and had the option of getting it back, or donating it! What a wonderful experience it was!! I am hoping to register a weekend for Rett Families for next summer!!! The picture up top is of Caitlyn enjoying the ride around the lake in the camp's boat!! Sooo much fun!

Friday, July 10, 2009

Caitlyn's Surgery

Just a quick update to let everyone know that Caitlyn is resting in her hospital room after her surgery this morning. Everything is going ok so far. I will post more in detail when I am able too. Thanks for all of the prayers.

Thursday, June 11, 2009

One step closer

Caitlyn was a pro today!! She had her Upper GI study done, and didn't fight it at all. She refluxed twice during the study, but the doctor said there doesn't appear to be any damage from the reflux! Thank God! So, unless we hear otherwise, it sounds like we have the go-ahead for surgery on July 10th and it will NOT include a Fundo procedure.

As the day approaches, it is getting a little easier. After tomorrow, there is one more week of school. After that, I start work at summer camp and Caitlyn heads to daycare. It will be nice to have a couple of fast pace weeks before surgery!

If you are local, I'm sure Caitlyn would LOVE visitors while she is in the hospital. We are hoping to only be in one night, but will update more as we know it! Thanks to everyone for all the love and support.

Saturday, June 06, 2009

Surgery is scheduled...July 10th

I just had to start off this post with this picture of a very sweet looking Caitlyn...Isn't she beautiful? I love my girl!!

Eric and I told Caitlyn on Tuesday for a consult with her surgeon. He was wonderful! We really like him, and that will make this all that much easier! He talked to us about the surgery, and what it would involve. We talked about her reflux, and discussed if we wanted to have a fundo done at the same time. He told us that with the increased volume in stuff going into her stomach, her reflux could increase. We all agreed that since she is only on the Prevacid once a day, there is still room to increase that dosage if needed, and we declined having the fundo done! (soooo thankful to those before us that have shared their experiences!!) Caitlyn will hopefully only be in the hospital over night. She must be eating and drinking the same as before surgery in order to go home. The feeding tube will be in, but we wont use it for about 7 days.

Caitlyn will have a bard feeding button placed during surgery. Her surgeon prefers the Mic-Key button overall, but likes to put the bard in to start with. The reason is, it is harder to pull out. If something should happen, and her tube came out, we would have less than 2 hours to get her into the hospital to have it replaced before the hole closed up. We will go in after three months to have the tube replaced, and we can switch to the Mic-Key at that time if we'd like. While under for surgery, Caitlyn will also have an umbilical hernia repaired. On top of that, we will take advantage of her still state to have dental x-rays done! It will be a big day and change our lives forever, but I'm sure it is for the best. Our hope is that Caitlyn will continue to eat for enjoyment. On those days when she just wont do it, the tube will do it for her...

I appreciate everyones comments, thoughts and prayers while we go through this. I am doing ok...well, that is until someone asks how I am doing. This is an incredibly hard decision to make for Caitlyn. I know in my head that once it is over, I will be fine...I know this is what she needs. Until then, I feel like I have failed at the very thing I have be given to do. Feeding your child should be the simplest of tasks, and I can't do it...I can't get my own child to eat enough to sustain, let alone gain weight. So, I love the support and I love that we have such caring family and friends...But if you ask how I'm doing with this decision, please consider having a tissue handy...I just might cry...

Friday, May 15, 2009

The announcement I never wanted to make...

In late March, I posted about Caitlyns struggles with weight, and what was to come next. So, in the past few weeks we have had a floroscopic swallow study done, and met with the Nutritionist.

First the swallow study...In that post about her weight issues, I said we didn't expect anything more than an immature swallow to show up on test....Well, I was wrong. Caitlyn's feeding study showed silent micro aspiration caused by a delayed swallow. A break down: Silent-meaning there was no gagging or coughing to clear the liquids from where they didn't belong; micro aspiration-a small amount of liquid was going into her airway; delayed swallow-Caitlyn would pool her thin liquids in the back of her throat before swallowing, instead of swallowing more often...Then after the liquids pool, she would swallow causing the micro amount of liquid to go into her airway. So we went into that appointment not expecting anything...We came out with orders to thicken all liquids to a nectar consistency...

We continue to struggle from day to day with feeding...Dinner seems to be our biggest struggle...With dinner, we have 6 pills that Caitlyn has to take...Some nights it is such a fight that we both end up crying in the end...Eric and I have discussed a lot what options we have...The constant fighting and forcing of food has become a huge quality of life issues. So yesterday Caitlyn and I drove down to Children's hospital with our 3 day diet log to meet with the nutritionist. We talked about everything, and she looked at the diet. She said we were doing all the right things to add calories. That felt good to hear. It is nice to know you are doing what can be done...Yesterday Caitlyn weighed in at 40 1/2 lbs, and is 3 feet 11inches. This plotted her with a BMI of 2%. A child is said to be underweight with a BMI of 5% or less. It is of no surprise that Caitlyn is underweight...

So, after going through all of the pros and cons to all of the decisions, we have come to one...We didn't come by it lightly...It took a lot of discussion, but Eric and I have decided, with the support of the nutritionist and her Ped, that we are going to begin the process to have a G-tube placed. It is not for the convenience, it is for the sanity...It is for the peace of mind of knowing that she will get her meds ever night with out a fight...It is for those nights that she is exhausted after a day of seizures, and just doesn't want to eat...It is for next year and every year after when she gets sick...We will never again have to fight through drink after drink to keep her hydrated through illness...I'm scared and terrified and a little sad that this is the decision to be made...But am also hopeful for the future...

Thursday, April 09, 2009

Some good and some bad

Of course we should start with the good!!!!!! I can't believe I never posted this...Caitlyn's school progress report came out in early March...Now, she has been on an IEP for nearly 3 years now and has NEVER met a goal. We have seen a lot of "making progress but goal not yet met," or "expected to meet by end of period" and then never meeting it...Well, I am soooo pleased to tell everyone that Caitlyn met her first two goals!!! They are both simple self help goals. One is eating from a loaded fork, which she is doing wonderfully well with! Now, if only we can get her to not throw the fork across the room after taking the bite...Do they sell weighted forks anywhere? The other goal is putting her tray away after lunch. It think this goals is significantly adapted to look something like Caitlyn walking a couple of steps to a bin at the end of her table, and it being done with a considerable amount of support to direct the tray where it needs to go, but she gets it! And they are accepting the process as meeting the goal, because it is obvious by her eye gaze that she gets the instruction, just needs help with the motor planning to complete the process.

I don't know if I posted on this yet...I was kind of waiting until we received it so I could post pictures...The school district is getting us a child specific weighted blanket to help facilitate with communication! It is amazing have fast that pressure pulls Caitlyn out of a melt down, and allows her to communicate what she needs!!

Now a little bit of not so good news...We seem to be dealing with an increase in seizures. It is so frustrating to see, when we just added a new med! I know that it is most likely because she is not to a therapeutic level on the Depakote yet. I really hope it isn't in fact the addition of the Depakote! She was reported to have a few yesterday, and she had one today. They do continue to be short, but scary when she is standing. I am afraid she is going to fall one of these days...

Ok...Caitlyn's kindergarten class is going on a field trip soon. We are hoping to find a way for Caitlyn to be included for this field trip, but it is a lot of walking on uneven ground at a nature place...I wonder how the Maclaren would do off roading...Or maybe the school district would have a chair she could use...I just don't want her to miss out on all the fresh air! She'd love it!

Saturday, April 04, 2009

Caitlyn's first Easter Egg hunt

We had such an amazing afternoon! We took Caitlyn to her first Easter egg hunt. It was held at a storage unit complex! The gal that is manager at the building has a grandson with special needs, and she remembers there never being a place for him to go for egg hunts. So she decided to change that this year! Caitlyn got her picture taken with the Easter bunny, then they give you a list of about 15 units. They took us upstairs and we went to all the units on the list. The kids got to open the storage unit door, and in the back of each unit was an Easter basket with eggs. She got to go in all the units and pick an egg out of the basket! It was so much fun!! So, I took some pictures to share!
Caitlyn and the bunny. That is Eric's arm holding her in the picture.
These next two kinda show how Eric would hold up the basket for Caitlyn to take an egg out. She would pick an egg, hold it for a second or two then drop it. She had fun! Next to her in the first picture is Alex (aka Bear) and his mom Serena. Alex liked to find an egg that shook, take out the candy, and politely put the egg back...So it appears we ended up with a couple empty eggs! He has Autism, and did an AWESOME job following the group and picking out his eggs! Way to go Alex!!
These next two, it was Caitlyn's turn to open the storage unit door! This is my friend Dora helping Caitlyn open the door. (that is her son Jackson next to Caitlyn)

And here we have Caitlyn leading the group in to the unit! I think Jackson is to the side of her. Behind her are (from left to right): Crystal's girls Alana and Kaila, and Dora's youngest Timmy.

Dora, Crystal, Serena and I all got to know each other because of something that none of us asked for. We all have a child with special needs. None of us asked to be part of this club, but through the Arc of Snohomish County's Mother's Network we have gotten to know each other, along with several other women, and become great friends! The ladies of the Arc of SnoCo's MN Rock!!!!!

Monday, March 30, 2009

The Reason I Get Up Each Day

After my last two posts, I am so happy to be able to post a positive post! Caitlyn is doing WONDERFUL!!!! We are still struggling a little bit with the feeding, but most days are going great!! It seems something is working!

We are on spring break this week, but Caitlyn finished off the week with a bang last week!!! Her 1:1 reports that Caitlyn had some of her best days ever in Gen-ed. Thursday she went all day without any need for a break! In fact, she came home and went strong until she crashed for bed at 7:30! The other kids in gen-ed seem to be noticing a change in Caitlyn. She has been so happy this past week! She was playing with some blocks with a couple of other girls, and they were tapping Caitlyn on her shoulder and saying her name. She was turning towards them! We are sooo excited with the changes we are seeing in her...

Now, maybe someone can tell me why...The Depakote seems to be affecting her eating in a good way. Could the joy, happiness and attentiveness be improving because of the L Carnatine? Or could it simply be that she is getting enough to eat, and isn't having seizures? What ever it is, I am sooooo happy to see this side of my little girl!!

So happy in fact, that I want to share it with every one! Last fall I promised everyone a picture of Caitlyn on the swing at the park...The shot of pure joy on her face was sure to brighten every one's day...Well, I couldn't get her to smile and look at the camera, so I did one better...We went to the park with Crystal and her three kids yesterday. The weather was chilly, but beautiful! I captured some joy to share with everyone. We have seen/heard very little in the way of tears in our house in the past four days...It is these times that I carry with me. The are the reason I can get out of bed during the bad times...Enjoy the happiness...(If you listen carefully, you can hear her giggles. We have heard a lot of those lately!

Wednesday, March 25, 2009

Feeling so blessed

I hate Rett Syndrome, but I don't think there is any other community that is as supporting in a time of need! We are struggling, but our Rett Syndrome family is here for us, and that feels amazing!

To answer Brandi's question, Caitlyn is not a milk drinker. Rarely we can get her to drink a few sips of strawberry milk, but it is few and far between. When we took her off of the bottle at 18 months (before diagnosis, or I don't know that I would have taken her off the bottle!) she quit drinking milk like she had before. We did find Ensure has pudding now, so we may try that.

To add to everything, Caitlyn has developed a sore on her tailbone. I am going to look at in when I got in to give her a breathing treatment, but I'm not sure yet what it is. It appears to be like a pressure sore of some sort. Hopefully it will heal quickly.

Tuesday, March 24, 2009

Rett Syndrome Strikes again?

Well, here is the update I promised!

First, here is the connection we seemed to have made. In mid January, we upped Caitlyn's Zonegran to 250mg. It seems that for the first time, we got hit with a side affect. We started to notice small changes in Caitlyn. First, we noticed when we were changing her that her tail bone was sticking out. Slowly we began to notice other changes. Her pants were needing to be cinched up more, and some were falling down that hadn't been before. To someone on the outside, the changes were subtle. To her mom and dad, they were huge, and coming fast.

There were nights when we would be lucky to get enough food in her to give medications. Some mornings she wouldn't even finish one package of oatmeal. It was a struggle, and became a fight to feed her sometimes. We would even make 3 different dinners, thinking maybe she didn't want what we had fixed...Our life was revolving around food...

Last week we headed to the Nuerologist for a check up. The last time she was there was December 1st. They weighed her, and she was down a full kilo. (that is 2.2 lbs) He decided to add Depakote to her med list, as it is supposed to be a appetite stimulant. Once we get to a comfortable level on the Depakote, we will taper off on the Zonegran. He said he'd rather her be middle of the line on two different meds, instead of topped out on the Zonegran.

So this appointment came in the middle of a nasty cold that hit our house. This cold had Caitlyn not eating at all on some days. She would get in these coughing fits that would make her start vomiting. It was horrible! Then I hear she has indeed lost weight...grr..So, I scheduled an appointment to meet with her Ped. and discuss our options. (we also saw another doctor in the clinic last week, and started breathing treatments for Caitlyn's cold. That got her eating again and gave her a bit more energy)

Today was our appointment with the ped. Let me just say, my daughter's pediatrician is the most amazing person in the whole world! He really cares! And to top it all off, he has an adult son with Cerebral Palsy. (I'll tell you a bit more about that in a second) So we discussed everything. He seems to think the Depakote will help a ton! I sure hope so! In the mean time, we will be seeing a nutritionist, and having a swallow study done. We don't expect the swallow study to show anything more than immature chewing, but want to cover everything.

So, we nervously brought up the g-tube issue at our appointment. We talked about how we can sit for 1/2 an hour and get very little in her! He shared with us some of his own experiences. How they look back at pictures of his son and his face with no meat on it...How he remembers trying to feed him with a syringe, fighting with each spoonful. He said he has never spoken to a family that regretted their decision, but that most said they wished they would have done it sooner. He said we will go with our plan for the next few months, and if in the end we haven't seen progress, we can honestly say we tried everything we could. It does feel wonderful to know that he completely supports us, and we support us if we decide that a g-tube is what Caitlyn needs. It doesn't make that decision any easier, but for now we will just keep an eye on her, and add butter and cheese to EVERYTHING that we can.

It is wonderful knowing we have the support. I will update as things change. Right now, my "skinny mini" (as we like to call her) is 38 lbs and 3ft 10.75 inches tall. Her BMI isn't as low as first thought, but it is lower than it was, and below that magical 5%. Please pray for her weight gain, and the sanity of mom and dad during meal time struggles!

Tuesday, March 17, 2009

Preparing an update

I just wanted to let all of my readers know that I will have an update up within the next week. We have some news to update, but I'm waiting to share it. We have an appointment next Tuesday with Caitlyn's ped. to discuss some things, and then I will come and update everything. Just pray for my little girl right now...

Friday, February 13, 2009

Party! and a bunch of other updates

Let's see...Where should I start...On the childcare front, our prayers have been answered. Caitlyn is being cared for now completely in the home! She gets to sleep a little later, and takes the bus from home! We found an amazing lady who is a former special education teacher. She comes in the morning and gets Caitlyn moving, feeds her and puts her on the bus. She totally isn't even phased by any of Caitlyn's issues, and that is such a blessing. And are you ready for this? She does our dishes! It have only been one week, but the first week went great!

We have had some really rough moments in school with para's in the past month or so. I can't go into a lot of detail, because you never know who might read this! But let's just say after some bad events, and writing emails and talking to the principle, Caitlyn is now being fully taken care of! She has the most amazing 1:1 all day! We couldn't ask for more!

Caitlyn continues to hold good seizure control after her last medication increase. I think she has had 3 short seizures all week, and maybe one overnight. We got back to the doctor on the 16th of March. Who knows what is next. Of course every family dreams about complete 100% control, but what do you do if that 100% control comes at the expense of your child's personality? If that 100% control is going to cause your child to have severe fatigue, and zone out what would you do? We fear that the next step for Caitlyn is adding another medication to the mix. We have been so lucky to have no side affects with the Zonegran. If it means keeping her "awake" isn't 90% control enough?

Last, but not lease, yesterday was Caitlyn's Valentines Day party at school! She got to go to 3 parties!!! They had one in her Life skills class, which I missed most of because I had an appointment. Then after lunch she got to go to a party with 5th graders! Her 1:1's son's class was having a party, so she and Caitlyn went to that. Then we went into Gen Ed for their party! It was great! I loved seeing how the other mom's interacted with Caitlyn. She truly is just another child in the class!

And I leave you with some pictures of Caitlyn and her 1:1 decorating a cookie. It seems that Caitlyn didn't care much about spreading the frosting. She leaned in and took a big bite of the cookie while she was spreading the frosting! What a stinker! She had a great time, but it was a busy day!

Friday, January 30, 2009

The reason I was raised on Country

There is a reason for everything. That is my feeling in life. Some things aren't as clear as others. While I was growing up, my mom listened to Country music and my dad listened to oldies. My older brother was into some really loud stuff. I'm sure it had words, but it just sounded like noice to me! All of my friends in school thought I was crazy to have picked up the country gene. I love Country.

I have finally found out the reason I was raised on Country! On March 1st, the new season of Celebrity Apprentice will start. This year Clint Black will be playing. I am so excited to announce that he has named the International Rett Syndrome Foundation as his charity!!! I love Clint Black. People have asked what his connection is. Clint had a niece that passed away several years ago from Rett Syndrome related complications.

So, since I was raised on Country, I decided to take this opportunity to raise awareness in my area. I have emailed the local country station's waking crew to see about an on-air interview. I would love it if the wonderful country listeners in the area knew exactly who Clint Black was playing for.

You can do it to! You don't have to be a country listener to take advantage of this opportunity. Email or call your local country music station and ask for the opportunity to do an interview about what Rett Syndrome is in your life. Let's tell all of Clint Black's fans what a great thing he is doing by playing for our kids!

*stay tuned for the report from Caitlyn's first trip to the movies.

Tuesday, January 27, 2009

Welcome to the Family

This is Caitlyn, just a few months before diagnosis

Three years ago today, we had an unexpected and uninvited visitor come to our home. We tried so hard to run it out, but it kept taking over our lives. It brought with it things that I never knew about, and didn't really want to learn. It took things away from Caitlyn that weren't fair, and told us it wasn't giving them back. It made the doctors think that Caitlyn was going to mentally be a 2 1/2 yr old for the rest of her life. (ok, that doctor hadn't met IT) When we learned it's name and found out where it came from, we hated it even more. Here was this thing that we didn't want in our lives, and it was taking over! It took my daughters love of coloring...It took her ability to speak, it made her hold her breath and hyperventilate...It brought with it seizures, reflux, stereotypical hand movements, irregular breathing, stares from strangers and a whole lot of other things I'm sure we haven't found yet. It let little surprises for us all over the place! For the first year it was with us, on the the good days I could forget it was here. On the bad days I hated it! I hated what it was doing to my family. It changed our lives forever.

On the first anniversary of it's arrival I cried and cried and cried. I asked it when it planned on leaving us alone! Last year as we came to realize it had been with us for two years, I didn't let it effect my emotions...But I still wanted it to leave us alone!

Today, I can say "Welcome to the family, Rett Syndrome." Although there are still moments that are difficult, I can say with a smile on my face that it didn't just bring bad! When Rett Syndrome came into our lives, so did our ability to adapt. It brought with it an amazing appreciation for all things God creates. Rett Syndrome introduced me to some amazing people. I met people that knew Rett Syndrome before me. There were special people (thanks Rose Marie!) who made me realize that Rett Syndrome didn't have to be all bad. I learned to take my life slower, and not take anything for granted.

Yes, I still want Rett Syndrome to leave us alone. And I hope and pray that one day it will decide it is done visiting us (and all of the other children it lives with) and leave. There are still days that I strongly dislike the fact that it chose to be in our family. But, just like anything else it is still part of our family.
Acceptance is huge. I don't know that I am 100% there, but I am so much further than I was 3 years ago.

Rett Syndrome introduced me to some wonderful women through the Snohomish County ARC who made me realize I had what it took to fight, and be an advocate for my daughter and others. The ladies there have been amazing sources of information and support. I love you guys!
One day in July, shortly after our diagnosis, there was a comment on my blog. It was from a mom living in Singapore at the time, that had just received news that Rett Syndrome had also joined their family. My heart broke for them. For some reason this was the first time I realized we weren't going to be the last ones on earth to learn about Rett Syndrome.

Another mom came along (and she wasn't the only, but was the first) that told me I was an inspiration. I guess somehow through my blog writings I was helping other mom's (and dad's) realize that they could live with Rett Syndrome. She is now my inspiration in everything that I do. (Thank you Kelly B. for inspiring me) Why should I sit back and live with Rett Syndrome, when I can help other families see that they too can live with it.
As mad as I was the day Rett Syndrome joined our family, I can only thank it for the things it has changed. I have made amazing friends because of something so horrible.
Rett Syndrome, welcome to the family. But don't get too comfortable, because there are some pretty cool people out there that are fighting like crazy to find a way to make you leave!!

Caitlyn now

Thursday, January 22, 2009

Why can't it be simple?

There are little things through out our lives that remind us of the challenges that Rett Syndrome presents. There are big things also...We deal with the big things every day. Right now we are dealing with the little things. Between now and next Tuesday I will be doing some reflecting. Tuesday January 27th, 2009 marks 3 years since we received the news that Caitlyn did indeed have Rett Syndrome. I wont get all into that right now...The focus of this post is the irritation that it can't be simple.

We have a pretty good deal going on right now for childcare coverage. I am with my 4th employer since Caitlyn's diagnosis. I left the first place shortly after receiving the news, because the Neuro scared us all to hell. (more on that another day) I stayed home with Caitlyn until the following fall when she started Preschool. Every other time I have had to leave a job, it has been because of something related to her childcare coverage. There was one gal who seemed to have it all together at first. It turned out to be not a good match, and left Caitlyn with a fear of having BM's. (a very long story) Right now we have a great set up! In the morning Eric drops her off at a sitters house. The bus picks her up there and takes her to school. After school, we have a wonderful friend that gets Caitlyn off the bus. Well this week our morning gal said she doesn't know if she'll be able to continue watching Caitlyn. Through no fault of her own, this pisses me off! If my daughter didn't have Rett Syndrome, I could sign her up for the YMCA at her school. I would get a 25% discount since I am an employee. Something as simple as finding childcare for my daughter sends my emotions in a whirlwind, and just really pisses me off.

On a happier note, Caitlyn's medication increase seems to be working for the time being. She had two seizures during the day on Sunday, and we haven't seen or heard of one since!!! Cross your fingers and pray with us that we will get a break from them for awhile.

*I will work at getting some new pictures in the next few days...

Monday, January 19, 2009

If I don't blog about it, did it really happen?

That seems to be my train of thought lately...If I don't type it out on my blog, there is a small part of me that can pretend it didn't really happen. For this update, I have to go back in time to the week of Thanks Giving. The Tuesday before Thanks Giving, Caitlyn's wonderful daddy got up with her at 12am. They stayed up so Caitlyn could go in for her sleep deprived EEG. (Have you ever done this? hahaha...not fun!) The next day the nurse called me. She started out asking how Caitlyn was doing, which made me a little nervous. She informed me that the blood results they had recieved the week before from the ped. left them a little worried. I guess her Zonisamide (the seizure med she is on) level was 32 in May, and dropped to 23 in November. This is the level of that medication in her blood. I told the nurse that she was doing ok. That we had seen a couple of seizures here and there in the couple of months prior, but nothing to big. (or so we thought...keep reading)

So in the first week of December Eric took Caitlyn in for her Neuro appointment. The doctor was comfortable with her current dosage, as long as we weren't seeing a significant increase. He did recommend starting her on MCT oil, but my research left me wondering if the potential side effects of weight loss and stomach issues would really be worth it. I found nothing supporting MCT oil on its own. I did find that it is used with a modified KETO diet, but we wont go there with Caitlyn.

We started to see an increase around Christmas time, but Caitlyn also had a sinus infection, so we were waiting and watching. They kind of taper off..(again...or so we thought) Then last week, she had one while napping at school. I called the nurse. And while I was waiting to hear back, I spoke to a couple of friends whos kiddo's also have seizures. I started to talk about Caitlyn's funny grunting in her sleep, and going into her room to see her shaking. There is so much talk about the startle motor issues that kids with Rett Syndrome have, I guess we just never brought this to our neuro's attention. This is something Caitlyn has done for several months. My friends and the nurse confirmed what I think that deep down I already knew. These seizures at night last about 1-1 1/2 minutes. The nurse said they will be worse when she is first falling asleep or waking up. This gives me just enough peace to sleep a little...

So the meds have been increased to 250mg's once daily. I think this may be the highest we can go on this med. The idea of adding another medication is terrifying. You see, we have been so blessed to not have any side effects...

In other news, I have been appointed to the Washington State ARC board! This is an exciting new adventure for me. I hoping that this will help me do everything that I can in my role as Regional Rep for IRSF

To all the other families out there dealing with seizures tonight...Together we will make it through.