Friday, July 08, 2011

What have we been up to?

Wow! Where did the time go!!! The kids have both changed so much in the past few months! Here we are all hangin out after school one day. (it was pj day!) Caitlyn and I were having some cuddle time, and Gunner felt a little left out. He climbed his way up, and Caitlyn thought it was the funniest thing!!!

So, what have we been doing? Well, Gunner isn't walking any more...It is more like a run everywhere he goes. Luckily he does hold my hand and walk when I need him to...unless of course he sees a worm...He just recently started working on using a fork! Wow! That is huge around here...It was a little bitter sweet, as this is a skill that Caitlyn has never mastered, yet it seems to be coming to him so easily! It does make me realize even more so how much Caitlyn works towards the things she can do. Anyway, back to Gunner. He is a sensitive little guy. I recently got frustrated with constantly telling him no, so decided to start doing our own version of a time out. This was almost two weeks ago! He was getting into daddy's papers by the fax machine for the millionth time...I got down and in a firm voice using his whole name told him it was not ok, and took him and sat him on the floor by the couch. He didn't stay there, he got up following me for a hug in tears...But, he has not been back to that fax machine since! When he is really tired, even a simple no in a regular voice sends him to tears...He is so eager to please!

He loves his big sister soooo much! He brings her toys when she's in her chair, and will keep coming back for more when she continues to pull his hair and smack him on the head. He is our teacher..He is teaching us the true meaning of unconditional love!

What's she up to? Caitlyn finished up school a couple of weeks ago, and just finished her first week of summer school. She is doing EXCELLENT!! We are very pleased with her progress, and love to see her shine! Of course, she loves to shine too! We are dealing with some behaviors that are new, and hopefully wont stick around. It is a struggle day in and day out...she wants so much of our time and we know that her acting out comes from feeling like she isn't getting enough of it...I suppose, like any child, negative attention is better than no attention at all. We try to give her more 1:1 time, but it is a struggle right now.

Health wise she is doing fantastic!! She has put on about 7 lbs since the end of March, and actually has some meat on her!
Here we are together at a very fun event! A group of super awesome middle school kids at the school across the street put on a special olympics even for the two schools. It was such a wonderful experience! Caitlyn LOVED all of the attention, of course! Even Gunner had a good time!

Summer is here, and of course a challenge. Because of Gunner's age right now, it is hard to get out of the house...he isn't listening quite enough to just hang on to Caitlyn's chair, but she doesn't always have the stability to walk. I am always looking for volunteers willing to donated a couple of hours of stroller pushing, or kid chasing so we can get out of the house. They really are good kids, but there is just only one of me!

What am I up to? Well, I just finished my first quarter back in college. I got a 4.0 in both of my classes!! If everything goes as planned, I should graduate next Spring with my Associate of Applied Science- Transfer degree in Family Support Studies. Then on to who knows what...either more school, a job, or both...only time will tell!

I will try to do more updating...I forget sometimes that not everyone who reads is one facebook!

Friday, April 08, 2011

Walking man!!

When on earth did this happen?!?!?

Wednesday, April 06, 2011

Bay Area Girls Trip

Here are some pictures from our trip, in no particular order.
Here is Caitlyn gaurding all of our stuff at the Oakland Aiport after we landed.

Here we are headed into San Fransisco on day two of site seeing. The first day into town we drove. One day two we took the BART. So, did you know the BART goes through something called the Transbay Tube? I just looked it up...A maximum depth of 135 Feet BELOW the surface of San Fransisco Bay!! I'm glad I didn't know that before I got on!! It goes down a little fast, our ears actually popped!

At the Aquarium at the Bay, the gal brought a couple of star fish out of the pond for Caitlyn to touch.

I think this may have been her very first touch.

This would by my reaction to my friend suggesting that I touch the Stingray! Glad Caitlyn is more brave than I!

We rode the Duck!!!

Here is Caitlyn getting to drive!

Here is the Firefighter's statue from our Duck tour.

We even did the 1 hr Bay Cruise!
Me and the Bridge

Getting ready to go under the Golden Gate Bridge!
Here we are braving the wind and waves!

We had a fantastic time!!!

What do you mean "too skinny?"

Caitlyn and I took a trip. We got on a plane and we flew to Oakland, CA. Are we crazy or what? It actually went great!! You can read a little about it her, on my new blog called Finding Balance. And, it seems not everyone has facebook, so I will do a post with all of our pictures too.

You may ask, why did Caitlyn and I go to California, leaving daddy and Gunner at home? Well, we went down to join the Natural History Study for Rett Syndrome. It was a great experience. If you have a child with a rare condition, you'll know what I mean when I say it is a breath of fresh air to see a doctor and not have to explain the condition to them!

So, the first doctor we saw was the GI doctor. I was a little discouraged after this appointment. She felt that Caitlyn was underweight still. That she should be atleast 62 lbs to be proportionate, and she is only 50 right now. So, to make up the difference and account for growth for the next year, she wants Caitlyn gaining 1 1/2 lbs a month for the next year!! That seems like a crazy lot to me. Given what we have done in the past 1 1/2 yrs, I feel lost.

Caitlyn has a feeding tube! This was her about 2 months before that was placed...She weighed 38 lbs and was about 4 ft tall.

And this is her now...She is 50 lbs, 50 inches. She is fuller and healthier...but still too skinny?!?!?

Ok, so she is still a little on the skinny side...but come on, she has gained 12 lbs in a year and a half!!! So, I guess we'll try and pack it on and home that all those who care for her can still do so when she has "thunder thighs" and weighs 62 lbs! I wish I had her problem!

Hold come the pictures in the next post!

Monday, March 14, 2011

Fight of a Lifetime

Five years ago, I never knew I was in for the fight of a lifetime. Not my lifetime, but Caitlyn's. The fight for quality and fairness, and all because of something she was born with! I volunteer on the state level to help advocate for the rights of people with disabilities. I was asked to write our story on services and what they mean to us. So, I am sharing it here.

As the parents of two children, my husband and I just want what every other parent wants. We have always wanted to be able to provide for our children everything they will need, and make sure that they grow up to be independent adults who can live the “American dream” and be anything they want to be. When we married, we never expected that the birth of our first child would change everything.

At two and a half years of age, our daughter Caitlyn was diagnosed with Rett Syndrome. Today, at seven and a half yrs old, Caitlyn relies on us for 100% of her care. She is unable to talk, dress herself, use the toilet, bath herself and feed herself. She receives about 80% of her nutrition through a feeding tube because of the amount of energy it takes to eat. She was burning more calories than she was taking in. She has trouble coordinating her body, and often times will walk into things or easily trip.

We still want to provide everything that Caitlyn, and now her 11 month old brother, Gunner, need. We want to be a two income family and live comfortably. Instead, my husband works and I have had to put my dreams on hold. In order for my daughter to receive Medicaid Personal Care, our family must sit at the poverty level. Really, it’s so much more than that. In order for my daughter to have me as “just a mom” for 77 hours a month, instead of me being her hands, voice, nurse and over all care provider, we must sit at the poverty level. For 77 hours a month, my daughter gets her mom back. For those hours she gets a mom who isn’t burnt out, who isn’t in pain from the lifting and who has the energy to play games and read books.

Caitlyn’s care provider has become part of our family. In fact, having her has allowed us to remain a family. Since she comes into our home, we get to goof around and play with our kids. My husband can come home from work and be “dad”, instead of immediately walking into the “caregiver/nurse” roll because my back has had it for the day. With MPC hours, we don’t have to worry about not having Caitlyn with us because we can’t care for her anymore.

Having MPC hours is bitter-sweet. I want to go back to school, get a degree and have a good job. The thing is the care that Caitlyn requires is so significant that I would be working just to cover all of her expenses and care. So for now, we feel trapped in poverty because we can’t physically afford to lose the minimal help we receive. For now, we worry. We worry about what happens when she becomes an adult. It seems every time we turn around, Medicaid Personal Care hours for adults are being reduced. We worry about how we will be able to keep Caitlyn in our community. I am a little on the short side, and 5 feet 2 inches. At 7 yrs old, Caitlyn is already almost as tall as me. It gets harder and harder already for me to care for her.

We need Medicaid Personal Care fully restored, and protected from further cuts. Parent’s in our state need to know that their “Caitlyn” can remain in the community that they have grown up in. We need that worry, stress and “what-if’s” of the future to be taken away. We need to know that when the day comes that we can no longer physically do the other 643 hours a month; the options will still be there so that our daughter can remain in her community.

Thank you for your time.

Sunday, January 23, 2011

Update with Picture Overload

Where has the time gone?? Gunner's first Christmas has passed, and so has New Years! I don't even know where to start with an update!!

I really wanted to get the kids over to the mall to see Santa this year, but it just didn't happen. They did, however, get to see him! He showed up at our family Christmas this year! Here is Gunner sitting on Grandpa's lap while he sees Santa for the first time!

And, one of Caitlyn on the same day. She was way more interested in the view of Lake Washington out the window, than of Santa!

Since Caitlyn was diagnosed with Rett Syndrome, the holidays have been rough. It seems like all of the differences are so evident during the holidays. I struggle with what to get her, and I struggle with wrapping presents that I'll just end up unwrapping myself. This year was much better!! We decided to start a new tradition. No wrapping paper! Santa showed up with these gifts on Christmas morning, and he must have known this was a "no wrapping paper" home. I had found a remote control dog that I was excited about. That is, until I was at Best*Buy looking for a gift for Eric. I saw an MP3 player boombox for kids! With Caitlyn's love for music, it was perfect! It made Christmas morning so exciting to be getting her something that I knew I couldn't go wrong with! Here she is having her morning tube-feeding while chilling with her MP3 player and her new princess Snuggie. We also went online and played some songs for her to see what she liked. Turns out she really liked Hannah Montana!!

And here is Gunner with the totally cool piano toy that Santa brought him! He might not fully get the whole Christmas thing, but he does get that a new toy showed up in the living room on Christmas morning, and that is pretty darn cool!!!

What fun would an update from our family be without a little drama thrown in? Last weekend started out as normal, aside from the cold that was taking up residence in our home. I went to the later Saturday morning Weight Watchers meeting, instead of heading to my normal 7am meeting. When I left, Caitlyn was just starting to wake up. At 9am, Eric called me saying to hurry home, that we had to take Caitlyn down to the ER. Well, when he went to hook her up for breakfast and meds, her g-tube button was gone! He tried to get the replacement button in, but it was a no go. We don't know how long it was out for. It all ended fine, with the nurses in the ER being able to get another tube in place, although it was smaller. It was very traumatic for Caitlyn, but probably more so for me. We had to help hold her down on the bed while they tried to push the new buttons in. She cried and looked at us with really sad eyes. Mommy saved the day, though, when I realized that my phone was able to link up to the hospitals wi-fi, and we could watch Wiggles videos on youtube!
And, an update on me. Every day I continue on my journey to a healthier me. I make dinners most nights for Eric and I (Gunner is even starting to eat some of what I make!) and continue to go to weekly Weightwatchers meetings. As of yesterday's weigh in, I have lost a total of 36.2 lbs since June of 2010! My clothes are fitting differently, and I just recently had to put my wedding ring on the shelf. It was getting too loose, and I was afraid I would fling it at someone. I have more energy that I have in a long time. I am doing this for me, and for my whole family! I gotta be able to keep up with these two!
And with that, I will leave you with this lovely picture of Caitlyn and Gunner. The relationship developing between them is so exciting to watch!

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!