Friday, July 08, 2011
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
Wednesday, April 06, 2011
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!!!
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 on...here come the pictures in the next post!
Monday, March 14, 2011
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
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!!
Tuesday, December 07, 2010
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
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.
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!