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!
Sunday, October 03, 2010
Tuesday, September 14, 2010
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
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
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!