October is Rett Syndrome Awareness Month

Sometimes along the journey we call life, we are hit with unexpected bumps in the road. Bumps in the road can test us to our limits, and sometimes leave us wondering "Why me?" When I gave birth to a baby girl in August of 2003, I was a new mom expecting smooth sailing. Caitlyn Theresa, we called her. She was the perfect baby. She never cried, she slept through the night by 6 weeks, she never had any kind of separating anxiety..did I say she never cried? She was everything I had expected motherhood to be!

Nothing changed over night. I wonder how that would have changed how I felt about it all. In Rett Syndrome, there is a period of typical development for the first 6-18 months. Then things start to change. Caitlyn followed that pattern. She developed at the later end of typical for her large motors, sitting at 8 months, crawling at 10 months, and walking at 18 months. At one year old, she was curious. She said a few words, and was beginning to develop an absolute love for coloring! She would hold the markers and get right down by the paper, and color these beautiful age appropriate lines.

Around 15 months, stuff started to change. Looking back, I remember how quiet she got. No

words, not even babbling! She also got pretty sick, so we weren't too worried about the lack of language development. At about 20 months, she started Early Intervention services at the Birth-3 center. She had wonderful loving therapists on her team. She wasn't making any progress in speech therapy and she had started to "tremor". We took her to see a neurologist. They wanted to first test her for Rett Syndrome and Fragile X to rule them out before going further in the journey to find what was wrong.

One of the hallmark characteristics of Rett Syndrome is the involuntary hand movements. So I figured we didn't have to worry. I read everything I could about Rett Syndrome, and knew it wasn't my daughter...Two weeks later, I had read everything about Rett Syndrome, and knew it WAS my daughter! Within two weeks she started tapping her hands together, and tapping her chest. On January 27, we found out what we already knew. Caitlyn had Rett Syndrome.

You can read back here about the bumps Rett Syndrome has brought to our lives. Times have been down right difficult, and times have been exciting and happy! The more we live our journey with Rett Syndrome, the more we come to really realize that Rett Syndrome is just a small part of who Caitlyn is. Today she is a happy 7 yr old full of energy! She loves hanging out with friends during lunch and recess. She gets excited to try new things, and go places with mom or dad. (even more so when she has mom/dad all to herself!)

Through the journey of a bump in the road, you learn to deal...I once heard it said "If you can't get out of it, get into it." Two years ago I hit a high point in our journey. I realized although Rett Syndrome sucks, it has touched my life in amazing ways. Here I talked about the ways Rett has touched my life. Today I learn Rett Syndrome has also prepared me for being the mother of a typical child. I cherish every little thing my son does. Things that many parents may take for granted, or even be bugged by. I love the messy meal times...I love the crying when hungry.

I have dived head first into the world of disability. I come from a political family, and was so sure while growing up that I would never enter into that life. I didn't like being in the spot light, and I still don't. I have realized that my role as an advocate is pretty political. I took on the role as Regional Rep in Washington for IRSF, then I took a position on the Board of Directors for the Arc of Washington. I can't get out of the world of disability, so I jump in feet first and change the things I can. I fight every day to make the life Caitlyn leads the best it can be!

Wondering about what Rett Syndrome is? Read my Rett Syndrome awareness post from 2008. For more information, or to donate to Rett Syndrome research, visit http://www.rettsyndrome.org/

Explaining my kid to your kid

I just typed this in an email to Caitlyn's new teacher as a way to introduce her to her gen-ed class when she starts in there. When I re-read it, I thought "I gotta share this!" For Caitlyn, her lack of hand control is her biggest social limitation...Hope someone else can use this!!

Tell your child to raise their hand, or stomp their feet. This is a physical action that they can do with little or no thought: an automatic response. Then explain that Caitlyn has to think very very hard to raise her hand or stomp her feet, and sometimes the message gets confused between her brain and her arm/leg. That is why sometimes she might not be very gentle, or might pull your hair. She isn't trying to be mean, her arm/hand/leg just didn't understand what her brain said. If they have every played telephone, you can remind them of how different the message is by the time it gets to the last person. That is kind of how Caitlyn's body works. Her brain knows what it wants the rest of the body to do, but the rest of the body doesn't always listen.

You will see that she puts her hands in her mouth a lot. She doesn't want to, and she would stop if she could. The problem is that her hands just don't listen to her brain! Sometimes you might see her wearing braces that kind of look like casts on her arms. This is to help her brain focus on something other than telling her hands to stop.

Caitlyn loves hanging out with friends! She likes to play out side! She laughs when it rains Ice Cream on "Cloudy With a Chance of Meatballs." She is more like you then she is different from you. She even gets mad if I don't do her hair the right way, or put the right clothes on her!

Long-winded princess update

I have read on other blogs that people some times get shot down for being too honest. I guess others find it depressing. Well, I take pride in my honesty on my blog. I'm not about to sugar coat the life I live. Who would I be kidding? There are beautiful ups, and down right nasty downs. Every day is a challenge, and we never have a clue what the day will bring. Will it be a day full of seizures, or a calm relaxing day? What good would it be to a family that might find my blog for the first time if it was all rosy and happy? When Caitlyn was diagnosed, I felt better knowing I wasn't the only one who thought it SUCKED!! Well, just a warning...it has been a long summer already, so this update might not be all happy.

Let's start with a picture...

I took this the other day after Caitlyn got home from school. It was a rare day that Gunner was asleep, and we got a private 1:1 momma daughter moment. I do love her dearly. As my mom tells me...She will always be my baby. Even as we look forward to celebrating her 7th birthday in a couple of weeks, she is my baby!

Updates, in no particular order:

• Caitlyn is doing AWESOME in school!!! She really took off about mid year. She is recognizing all the letters in her name, numbers 1-5, and identifying many objects. We know she knows WAY more than this, but these just happen to be some of her "goals." Parents of a non-verbal child get what I mean. She gets so bored with the drilling, that she often refuses to show us what she knows!


• She has mastered a yes/no system! This is so huge for us! She taught me a lesson the other morning. When Caitlyn says "no" I don't want to get dressed for school AND says "no" I'm not done on the toilet, I should listen. Time to slow down, and let her have control of the morning, I guess. Giving her a little control sure beats cleaning the carpet! We can say "do you want strawberry ice cream? yes or no?" and she will indicate "yes." She doesn't say yes for every flavor, strawberry seems to be a favorite


• We have wonderful seizure control! We do still see the occasional seizure from time to time, but for the most part her meds are keeping her stable. We have been lucky in that her lack of appetite is the only side effect of meds that we have ever seen. When she first started seizure meds 4 years ago, her neuro said it may slow her down a little...I'm still waiting!


• Caitlyn is headed to a new school next year. Rather than have two life skills classrooms at one school, the district has decided to have one at two different schools. We were originally supposed to stay where we are, but made a very difficult decision. We fought so hard to have our little girl in a gen ed environment and interacting with her peers, that it was really hard to move her away from that. The reason was pure safety. In the life skills classroom at her current school, she would have been the only child unable to defend his/her self. There are a few aggressive children in there, and I felt like all independence would be gone. She does have a 1:1, but we strive to have her be as independent as possible. I think we made the right choice, but only time will tell. She was going to have a new teacher anyways.


• She seems completely in love with her baby brother! most of the time...She does smack him on the head, but also gives him kisses. She has began to notice that he watches her, and loves acting silly for him.

Hate is a strong word...I don't know when it is ever really appropriate. But I have to tell you, I do hate Rett Syndrome. I hate what it has taken from my girl. I hate that she doesn't have a voice. I hate that she can't control the strength of her touches. I don't like worrying about the next day. I go through these phases where I get really down and just cry. I want so badly for her to be better. I want to be able to hear her say "I love you mommy" or even say "can we take him back now?" Some days are just hard....

I have to say, Caitlyn has had a very typical response to Gunner being here. She loves him, gets a little jealous, and has now started acting out for attention. This is such a struggle to deal with. Do we even know if she gets it when we put her in her room for a "time out?" She laughs and giggles, then returns to her new found attention getter..hitting and pinching. A never ending battle.

See? ups and downs...today was a big down, please let tomorrow be a happy up!

A Car seat growth comparison

Here is a look at how much my baby has grown...


Here he is on the way home from the hospital

This one is just shy of 1 month oldAnd here he is just after turning 2 months!

Stay tuned, he'll be 3 months old in 3 days!!

A long time coming...our addition

Wow, where has time gone? We were without internet for a few months, but are back now!! So much has happened since last I posted!! First, the biggest even occurred on April 15th. No, filing income taxes was not the highlight of the last 8 months! At 7:30 pm on April 15, 2010 we became a family of 4. We welcomed to our home Gunner Thor Christofferson.

His arrival was mostly uneventful. I started having contractions the Saturday before he was born. They would go every 5 minutes for about 40 minutes, then stop for a couple of hours. On Monday, my doctor checked me and nothing had changed! Wednesday April 14th, I went in for my weekly NST, to monitor his heart rate. He was having some dips, so they kept me for induction. It was a slow process. I was admitted, and pitocin began at about 10pm. They had to shut it off early in the morning, because the baby was struggling a little. After shift change, my new nurse at 7am figured out that Gunner's heart rate dips were related to my position during contractions. Once we figured this out, we were able to begin the pitocin again. I went from 0 cm at 7:30 am, to 3cm at 9am. Then, nothing changed. At 3:00, they came in and broke my water, and I was about 4cm by then. By 3:30 I was ready for an epidural. It was put in, though never fully worked. I went from 4 cm at 3:30, to 10 cm at 7pm! I felt way more with this delivery than with Caitlyn! It was amazing...Gunner was put on my chest immediately. I don't think I took a breath until I heard him breath. He is perfect! He was 8lbs 2 oz, 20 inches.

When we came home, Caitlyn seemed excited. It was all new, people were coming over to see the baby. Everything was going well. On the evening of April 25, at 10 days old, Gunner became unresponsive and lethargic. Prior to this, a simple diaper change would wake him up. Given our experiences with Caitlyn, we didn't mess around. We were scared, to say the least. I sat in the bedroom with him, crying, while Eric called 911. They decided it best to transport him to the hospital. He slowly began to improve. They did blood and urine cultures. Nothing showed up. The on-call ped felt that the event was neurological in origin, and ordered a CT scan. Thank God, that was clean! They decided to admit him for observation. As we were waiting for a bed to be available, I layed on the ER bed holding my sleeping baby. The oxygen monitors kept alarming as his levels would dip. They ordered a chest x-ray. It too, was clean. I guess the way I held him constricted his air way. We may never know exactly what happened on that day. We suspect it may have been a seizure, or a simple blood sugar drop that he recovered from. What we do know is that he is healthy and well, and nothing has happened since!

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!!

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!

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.

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.

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...

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...

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!

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!!!!!

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!

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.

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!

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...

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!

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.

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