The most important part of life are friendships. I truly believe this and live by this. I am with my friends as much as possible. Heck, I am on facebook looking at what my friends are doing on a daily basis. Friends support us and love us and we have so much fun with our friends!!
When I think about Cali and now baby Ryann it's hard to feel sad because they are so full of life and love. Now I watch Rae Rae at only 4 years old she is already having sleepovers and going to neighbor's houses to play, sadly Cali stays behind. It breaks my heart to watch her cry and beg to go. I don't even know how to explain to her why she can't go along. We try and make her feel better. "You will get to play with mommy and Daddy", we say. "You can help us with your baby sister", we say. How do you explain to an 11 year old girl that only her sister can go and play and she can't? I wish so much that she could experience these fun times of being away from home at a friend's house. She should be staying up late giggling and then coming home in the morning grumpy and tired from lack of sleep and too much fun. These are some of the small things you take for granted until you are faced with not having them. I feel so sad for her and now to think that Ryann will deal with the same challenges. I'm crying for sweet Cali and Ryann as I write this post. I know I have so much to be thankful for and I know I have to stay positive and see the bright side but it hurts. It hurts to watch your little girls miss out on anything that life has to offer.
I found this quote and love it: Regardless of whatever natural gifts we may have or lack, regardless of what obstacles and challenges we may confront, our souls are sacred and worthy of boundless love. (from the website for Friendship Circle, an organization that pairs teen volunteers with special needs kids)
Thursday, March 18, 2010
Tuesday, March 9, 2010
THANK YOU
I would like to start off by saying something very important. THANK YOU to all of our wonderfully amazing family and friends. I have never felt so much love and support and it means the world to me. I can face what I have in front of me calmly and rationally because we have such a strong support system under us. Our family and friends hold us up and keep us going strong. We say prayers with the girls before bed and we say "Thank you God for all of our family and friends. Bless them all like they have blessed us". I feel so lucky and grateful that I can say that. So, THANK YOU SO MUCH!!!
I have been through a lot lately. I am going through many trials that test my ability to stay strong, positive and open minded. I always say that we dont have a choice other than to be happy. I also say, "float above it" - rise above the chaos and overload and look at myself a little less seriously. This is my path and I can walk with my head held high or go kicking and screaming but I still have to go. I know that it will be ok. I know that no matter what life throws at me I can find the silver lining. MAN! that is next to impossible sometimes and MAN! do I get grumpy and stressed sometimes (Rick will attest to that one). But if I can take the time out and look at all that I have. Look at all the blessings in my life. Remind myself to be appreciative and respectful for what I DO have. My mom always used to say "Stop feeling sorry for yourself". At the time when I was young and she told me this I was pissed! I wanted her to feel sorry for me and coddle me. Now, I agree with her. I say, "Get up, paint a smile on your face and just handle it!" There really isnt any other way. I still need a hug sometimes though :-) xoxoxo
I have been through a lot lately. I am going through many trials that test my ability to stay strong, positive and open minded. I always say that we dont have a choice other than to be happy. I also say, "float above it" - rise above the chaos and overload and look at myself a little less seriously. This is my path and I can walk with my head held high or go kicking and screaming but I still have to go. I know that it will be ok. I know that no matter what life throws at me I can find the silver lining. MAN! that is next to impossible sometimes and MAN! do I get grumpy and stressed sometimes (Rick will attest to that one). But if I can take the time out and look at all that I have. Look at all the blessings in my life. Remind myself to be appreciative and respectful for what I DO have. My mom always used to say "Stop feeling sorry for yourself". At the time when I was young and she told me this I was pissed! I wanted her to feel sorry for me and coddle me. Now, I agree with her. I say, "Get up, paint a smile on your face and just handle it!" There really isnt any other way. I still need a hug sometimes though :-) xoxoxo
Thursday, March 4, 2010
Two special daughters with special needs
After our two hour neurologist appointment this morning its pretty safe to say that Cali and Ryann both have the same "thing". Whatever that "thing" is. Their "thing" is not specifically diagnosed but put into the category of Spinocerebellar ataxia. I went ahead and googled it for you and pasted what I found at the end of this post.
What is the next step??? At this point we are going to get Cali and Ryann a new MRI. After we receive the MRI the images will be sent to specialists (radiologists, geneticist, neurologists) that specialize in Spinocerebellar ataxia. Cali will also get an IQ test outside of school so that we can determine where she is delayed mentally. This will hopefully help her teachers with their teaching methods. (I say hopefully because with special education it all depends on the teacher and how motivated they are. We are also referred to an herbalist for acupuncture (worth a shot). Our doc says she sees great potential in Cali and she is a bright and happy young lady. We obviously agree and may I add she is beautiful and can be a pain in our butts as most tweens are. :-)
As you can see in the health article below their is not a cure only treatments to soften the symptoms. Wow, two special daughters with special needs! We are going to stay active and busy!! Oh, and as Rae always reminds us "I'm special too Mommy ". So really we are blessed with three special daughters :-). xoxoxo
From Wikipeida/Bing health article:
Symptoms
Spinocerebellar ataxia (SCA) is one of a group of genetic disorders characterized by slowly progressive incoordination of gait and often associated with poor coordination of hands, speech, and eye movements. Frequently, atrophy of the cerebellum occurs. [1]
As with other forms of ataxia, SCA results in unsteady and clumsy motion of the body due to a failure of the fine coordination of muscle movements, along with other symptoms. Generally, a person with ataxia retains full mental capacity but may progressively lose physical control.
Treatment:
Treatments are generally limited to softening symptoms, not the disease itself. The condition can be irreversible. A person with this disease will usually end up needing to use a wheelchair, and may need assistance to perform daily tasks. (that's for sure!)
The treatment of incoordination or ataxia, then mostly involves the use of adaptive devices to allow the ataxia individual to maintain as much independence as possible. Such devices may include a cane, crutches, walker, or wheelchair for those with impaired gait; devices to assist with writing, feeding, and self care if hand and arm coordination are impaired; and communication devices for those with impaired speech.
What is the next step??? At this point we are going to get Cali and Ryann a new MRI. After we receive the MRI the images will be sent to specialists (radiologists, geneticist, neurologists) that specialize in Spinocerebellar ataxia. Cali will also get an IQ test outside of school so that we can determine where she is delayed mentally. This will hopefully help her teachers with their teaching methods. (I say hopefully because with special education it all depends on the teacher and how motivated they are. We are also referred to an herbalist for acupuncture (worth a shot). Our doc says she sees great potential in Cali and she is a bright and happy young lady. We obviously agree and may I add she is beautiful and can be a pain in our butts as most tweens are. :-)
As you can see in the health article below their is not a cure only treatments to soften the symptoms. Wow, two special daughters with special needs! We are going to stay active and busy!! Oh, and as Rae always reminds us "I'm special too Mommy ". So really we are blessed with three special daughters :-). xoxoxo
From Wikipeida/Bing health article:
Symptoms
Spinocerebellar ataxia (SCA) is one of a group of genetic disorders characterized by slowly progressive incoordination of gait and often associated with poor coordination of hands, speech, and eye movements. Frequently, atrophy of the cerebellum occurs. [1]
As with other forms of ataxia, SCA results in unsteady and clumsy motion of the body due to a failure of the fine coordination of muscle movements, along with other symptoms. Generally, a person with ataxia retains full mental capacity but may progressively lose physical control.
Treatment:
Treatments are generally limited to softening symptoms, not the disease itself. The condition can be irreversible. A person with this disease will usually end up needing to use a wheelchair, and may need assistance to perform daily tasks. (that's for sure!)
The treatment of incoordination or ataxia, then mostly involves the use of adaptive devices to allow the ataxia individual to maintain as much independence as possible. Such devices may include a cane, crutches, walker, or wheelchair for those with impaired gait; devices to assist with writing, feeding, and self care if hand and arm coordination are impaired; and communication devices for those with impaired speech.
Wednesday, March 3, 2010
No news is good news is not always true
Waiting, waiting, waiting. I keep looking at my list of people that I have contacted with Cali and Ryann's MRI images and information to see if anyone can help us or refer us to someone who may be able to help us. I email, I call and then we wait to hear back. I have to balance continuing to check in with them to see if anyone has anything to tell me and stalking them by emailing and calling every day. I understand everyone has their own life, their own problems, their own day to day that makes time fly by. I dont want to seem like what I am dealing with is any more important than what anyone else is dealing with. I'm just saying the waiting is killing me. They say no news is good news but not in this case. We would LOVE to hear some news. Patience is a virtue right?
Tomorrow is our appointment with our new neurologist. She will do a full comprehensive exam and then write a report. She will then order new MRI for Cali and Ryann with the top imaging equipment out of UCI. We will have new information to share with any contacts which we hope will help. We just need someone out there to have seen something like Cali and Ryann and then see if there is any treatment for them. We may not find an answer or diagnosis but its important to never give up trying. Its important for possible treatment for Cali and Ryann and for our family genetics.
Tomorrow is our appointment with our new neurologist. She will do a full comprehensive exam and then write a report. She will then order new MRI for Cali and Ryann with the top imaging equipment out of UCI. We will have new information to share with any contacts which we hope will help. We just need someone out there to have seen something like Cali and Ryann and then see if there is any treatment for them. We may not find an answer or diagnosis but its important to never give up trying. Its important for possible treatment for Cali and Ryann and for our family genetics.
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