Tuesday, December 07, 2010

I hope God has Sponge Bob DVD's

I really wish I wasn't posting this today. I thought about not posting it, because I know that people actually read my blog and I try not to write too much sad stuff...But I want you to know about a special boy...

I came to know the family a couple of months before Gunner was born. For so long before that, they were just another "friend" on Facebook with a child who had Rett Syndrome. Then one day I found out they were going to have a baby boy, and we were due right around the same time. I got to know Kerrie, and with that came learning about her beautiful son Aidan who was 2 at the time. Our baby boy's ended up being born on April 14th and 15th, and our bond continued!

Aidan is the little boy no one tells you about when your daughter is diagnosed with Rett Syndrome. A little boy, who against all odds, was here on earth touching the lives of all around them. A smile that would light up the darkest of rooms. Deep eyes that reached right into your heart. Like Caitlyn, Aidan had Rett Syndrome. This past fall, he turned 3 and started preschool! I was so excited to see the pictures of him in a fully inclusive preschool classroom. I became friends with his mom, and he captured my heart.

The reality I talked about in my last post came crashing down this morning. I woke up and started my day, not checking facebook when I got out of bed like I normally do. I sat down with my breakfast and turned on the computer. The email subject line read "another angel gets his wings." The tears began to flow, even before I opened it. The loss of a child with Rett Syndrome was hitting again...Through the light tears, I read that it was sweet Aidan. The tears came harder. This one hit way to close to home! I knew this family...I was friends with his mom, his baby brother was Gunner's age...

I can't even begin to imagine what it must be like for them...My heart goes out to the family. I pray for their strength and healing in this difficult time. I know that Aidan is running, jumping and singing now. He went into the open arms of the loving Lord..Just way too soon. He will be there to welcome his mom, dad, brother and extended friends and family when the time is right.

As the tears of shock began to fade, the deep sorrow set in. Then, all of the sudden, I started thinking..."I hope God has Sponge Bob DVD's."

Hug your kids and say a prayer for Aidan's family..Hold them in your hearts.

Saturday, November 27, 2010

Hard Times, Facing Reality

Every now and then, we get the horrible news. Somewhere in this world, God has chosen a young girl/boy to join him while they are still young. It is never easy to hear. Sometimes they are young, just starting out in their journey...sometimes they are a little older than your own, and you think "that is only a couple of years away"...Or sometimes they are older, and you try to imagine that far away. Age doesn't matter, it is the reality that hits like a ton of bricks. It is the reality that according to many of the doctors, they are living on borrowed time. We try so hard not to think about it. We live in the moment, think that the disaster will never strike our family. Truth is, when it strikes the family on the other side of the world, it has hit home. We are all family joined by two simple words: Rett Syndrome. The devastation of a diagnosis has brought us all together as family. When the disaster strikes one of our own, we can only wonder if the others are on borrowed time. This past week, it happened again. Rett Syndrome has claimed another life. We shed a tear, face reality, and say a prayer. We pray that a cure is found before another life is taken. We hug our kids, and thank God they are here, while we cry for the family that lost one of their own. The devastation must end. We need our cure.

If Rett Syndrome has ever entered the life of someone you know and love, please consider making a donation to the International Rett Syndrome Foundation. With your help, we can make this harsh reality of thing of the past. With your help, we can think about the future, and say farewell to Rett Syndrome. Don't know what to get someone for Christmas? Why not make a donation in their name and take us one step closer to a cure.

Caitlyn thanks you.

Too long..again

Time slips away from us, and I forget that people are reading! It has been almost two months since our last post. So much has happened. And of course with lots of action comes a few pictures!

This is my playdough sunshine! I am currently going through a year long leadership and advocacy training program that is funded by the Developmental Disabilities Council in WA. Luckily, the wonderful ladies at the Arc of Snohomish county know we sometimes need to keep our hands busy while we are listening to presentations. It was a rainy, dreary day. I added a little sunshine to the room. I promise, I heard all the presentations!

We had our annual IEP meeting in October. The educational road for Caitlyn has been far from easy! We have disagreements, rough meetings and tears in the past. I am pleased to say that this years meeting was both civil and productive. It may very well be the first IEP meeting I have walked away from not wanting to cry. Caitlyn has a wonderful team on board this year, that all seem to see her potential. It is so wonderful to have staff that strives to help her meet her full potential. We are also excited to be actively searching for a voice-output communication device for Caitlyn. I know it will be a long process, but I can't wait for her to have a voice!

We spent the last few days of October at beautiful Cape Disappointment State park. We had one absolutely beautiful day while there, which was perfect. The trip wasn't all for fun! We took Caitlyn out of school for a few days to head down to the Ocean. On our second day, Eric and I woke up at 4:30 to get showered and get the kids dressed. We then left for a 2 1/2 hour drive in to Portland, OR to see a wonderful team of doctors and therapists that know Rett Syndrome. When you have a kid like Caitlyn, going to the doctor can sometimes be like going to the podiatrist (foot doctor) to have your eyes looked at! Rett Syndrome isn't a widely known syndrome. So, once a year we make the trek down to Portland to see "the team" at Legacy Emanuel Children's Hospital. It was a wonderful visit! They commented on how well Caitlyn looked, and were excited to see her growth both physically and developmentally. We walked away with some great ideas for communication and a plan to come pack next year! It was wonderful!

As you can see, Caitlyn had a bast at the ocean!! Unfortunately, we couldn't let go of her hand...She has no fear of water, and would have likely swam to China! Twice we were standing where we though it was safe, only for both of us to end up with water up to our ankles!! The first time I think we both freaked out a little...The second, we just laughed and splashed...Then headed back to the camper to get dry clothes! We have this state park on our list of vacation spots now!! (The picture of Gunner sitting on the beach is still on the camera, which I can't find. I will add it when I find it. :) )
Thanksgiving week started off with a bang! Monday morning, just as we were getting Caitlyn out the door for school, it started to snow! That was the only day Caitlyn went to school that week! Tuesday and Wednesday were both snow days!! Thankfully we have a wonderful gal who the state pays to come help out with Caitlyn. She was able to help entertain, and give me an adult to talk to!! Here is both kids Tuesday morning watching Ice Age while playing with the stacking rings...See, they both play with them the same way..That must be the right way...Who knows what the white pole that they came with is for!
Tuesday in never got above about 22 degrees F! Wednesday was a tad warmer, getting up to about 27 I think. Caitlyn's caregiver and I ventured out with the kids to Costco. Now that's a crazy place the day before Thanksgiving!! When we got back, I had to get a quick picture of Gunner in the snow...It was is first snow fall, of course! He has been fighting a cold, so we just stayed out long enough for a picture.
and now for a mommy update! In the middle of June, I decided is was time to get back to taking care of me, and signed back up for Weightwatchers. I was doing it when I got pregnant with Gunner and had to stop. I have watched through the years as my sister has done Weight Watchers, and made it goal weight. I knew from the past that as long as I stuck with it, I would lose. Well, I have had some up's and down's. Today was a high day though! I surpassed 10% loss of my starting weight! I have lost just over 26 lbs since starting ww. That is the last 5 lbs of my pregnancy weight, plus 21 extra lbs! The process takes such dedication, but I know that in the end I will be so glad!!! I am on a journey to a healthier, happier me; a mom that can keep up with her energetic children!

Sunday, October 03, 2010

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/

Tuesday, September 14, 2010

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!

Thursday, July 15, 2010

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!

Monday, July 12, 2010

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!