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.
Saturday, February 27, 2010
One Day at a Time
One day at a time, I have to keep telling myself that over and over. It's so surreal to think we are facing what we go through with Cali all over again with our new little baby Ryann. Its almost worse now that I know her fate. Cali has struggled so much, she struggles so much still now every day. As her parents, her family and friends we love Cali just the same if not more because of what she goes through. You can see the thoughts in her head through her beautiful knowing eyes. Cali draws people in with her beauty and her adoring disposition. I look at her and I cant help to think what she would be like if her brain were normal. She is 11 years old, in sixth grade with lots of friends and all that would be the same yet everything would be SO different. Its' scary to look ahead at what we will face. I have to tell myself that she is happy and that's what is important. Its ok that what she struggles with is so easy for most kids her age. Its the simplest things that you take advantage of and that come naturally that she has to work on so hard and still cannot achieve. Yet, every kid is different and who am I to ever feel sad about Cali. She is a blessing and God gave her to us. We were chosen to love her unconditionally, raise her and teach her to live her life independently. Thats the goal--- independence and happiness.
And now sweet angel baby Ryann, she has that same sweet look in her eyes. You can see that she knows what she is supposed to be doing or what she wants to say but her muscles just wont do it. She wants to clap her little baby hands or make babble noises at us but she cant. She tries so hard its enough to break our hearts into a million pieces. But it cant break. It has to stay together, we have to stay together for them. Its our job as their Mom and Dad to keep loving them unconditionally and raising them to be the best that they can be. We are just like any other Mom or Dad (good Moms and dads, like all parents should be). We are fighting the same battle. It's FOR SURE a battle. We fight for our kids all day everyday, even when they dont know it. We cant ever give up even when we feel defeated. We have to keep going one day at a time, making each day better then last.
And now sweet angel baby Ryann, she has that same sweet look in her eyes. You can see that she knows what she is supposed to be doing or what she wants to say but her muscles just wont do it. She wants to clap her little baby hands or make babble noises at us but she cant. She tries so hard its enough to break our hearts into a million pieces. But it cant break. It has to stay together, we have to stay together for them. Its our job as their Mom and Dad to keep loving them unconditionally and raising them to be the best that they can be. We are just like any other Mom or Dad (good Moms and dads, like all parents should be). We are fighting the same battle. It's FOR SURE a battle. We fight for our kids all day everyday, even when they dont know it. We cant ever give up even when we feel defeated. We have to keep going one day at a time, making each day better then last.
Wednesday, February 24, 2010
UCLA clinic visit didnt work out today
You would think by now I would know the protocol and routine for doctors. I decided to get my entire family up at 5am and drive an hour up to LA, in traffic of course, to find out that we were supposed to have an appointment! "Sorry Rick and kids but we came up here at the crack of dawn for nothing." oops....
UCLA Orthopedic Hospital/Cerebral Palsy Clinic says on their website that they have open evaluations for all ages 8:30am-12pm. That to me means "come on in"! I thought we would be the first to arrive at 8:30am to avoid the line of people lining up for their free evaluations. I thought Cali and Ryann would be meet these great UCLA doctors and they would sit down with us and tell us all the right people to talk to and all the right places to go. Our open clinic that we were totally looking forward to didnt work out. We were sent home with instructions and phone numbers for how to get into the UCLA "system". How in the world did i think it was such a great open casting call? Of course there is a "system" and I have a million and one hoops to go through with our health insurance first before we can even get into the UCLA "system". AND they only take appointments during this open casting call of Wednesdays 8:30-12.
Now for the positive side that we will look at and focus on: There happened to be a great physical therapist in the office when I went in at 8:20am this morning. Rick and the kids waited in the car and I walked around this old building and found her. She wrote down some phone numbers for me and gave me a couple new contacts. May I also mention that we went in to the worng building, their old location. So I am hoping that even though we drove to LA at 6am, with three very tired kids, for really no reason, that maybe she was the reason. Maybe, just maybe, her contacts will open doors for us. We have to look on the bright side right?!?!
xoxoxoxo
UCLA Orthopedic Hospital/Cerebral Palsy Clinic says on their website that they have open evaluations for all ages 8:30am-12pm. That to me means "come on in"! I thought we would be the first to arrive at 8:30am to avoid the line of people lining up for their free evaluations. I thought Cali and Ryann would be meet these great UCLA doctors and they would sit down with us and tell us all the right people to talk to and all the right places to go. Our open clinic that we were totally looking forward to didnt work out. We were sent home with instructions and phone numbers for how to get into the UCLA "system". How in the world did i think it was such a great open casting call? Of course there is a "system" and I have a million and one hoops to go through with our health insurance first before we can even get into the UCLA "system". AND they only take appointments during this open casting call of Wednesdays 8:30-12.
Now for the positive side that we will look at and focus on: There happened to be a great physical therapist in the office when I went in at 8:20am this morning. Rick and the kids waited in the car and I walked around this old building and found her. She wrote down some phone numbers for me and gave me a couple new contacts. May I also mention that we went in to the worng building, their old location. So I am hoping that even though we drove to LA at 6am, with three very tired kids, for really no reason, that maybe she was the reason. Maybe, just maybe, her contacts will open doors for us. We have to look on the bright side right?!?!
xoxoxoxo
Tuesday, February 23, 2010
Our letter asking for help
To Whom It May Concern: 2-23-10
My name is Cristy Spooner and I need your help. I would first like to say THANK YOU in advance for reading our story and trying to help our family.
We have three daughters, Cali (11yrs) Rae (4yrs) and Ryann (10 months). Cali and Ryann both have damage to their cerebellum which we have learned is an extremely rare neurological disorder. Our doctors told us that they had never seen anything like Cali before. Fast forward 11 years later, we now have a 10 month old little girl, Ryann, who is unfortunately showing damage to her cerebellum as well. Our doctors now are telling us we could be the first family to name a disease. We are lost and need help finding answers to help our little girls.
Here is a brief history of our story:
Cali was four months when she began having seizure like body tremors. She was hospitalized for a few days at UCI during which video EEG was obtained and the movements were determined not epileptic. An MRI scan of the brain revealed non-specific cerebellar abnormalities. A full workup of tests were unrevealing. When she was 13 months old she was seen at CHOC of Orange for a cerebellar biopsy. The biopsy showed increased blood vessels and thicker tissue which was not specific and no specific diagnosis was given. Two years later Cali was evaluated at the Mayo Clinic in Rochester Minnesota where another EEG and MRI study was obtained and still no specific diagnosis was given.
After years of trying to find an answer for Cali we decided to continue therapies, which include PT, OT, Speech, Horseback Riding therapy, Aquatic therapy, cranial sacral therapy and anything else we could try to help her. She is a bright and happy young girl. However, her developmental delay grows larger the older she gets. She cannot walk on her own or speakclearly. She in special education in the 6th grade. She has many problems with her gross motor skills. The older she gets the more frustrated she becomes.
We recently took Ryann in for her 9 month check up and our pediatrician recommended we see a neurologist because she was showing signs of seizure like movements (similar to Cali's). She is also delayed in her gross motor and fine motor skills. She cannot sit on her own or crawl. She was hospitalized for a few days at CHOC Mission during which video EEG was obtained and the movements were determined not epileptic. An MRI scan of the brain revealed nonspecific cerebellar abnormalities. A full workup of tests were unrevealing. Again no specific diagnosis.
My husband Rick and I feel helpless at this point. We are determined and motivated to find some answers to help our little angels, Cali and Ryann. We are struggling everyday to help Cali live her life to the fullest. It breaks our hearts that she cannot run and play or communicate with her peers. Now to think of the life ahead of Ryann is heartbreaking. We believe in our hearts, that there is someone somewhere that might be able to give us some answers. We are hoping and praying that someone has seen something similar to our two daughters' cases. We would be so grateful for
any help you can offer us.
I have included the MRI images for Cali and Ryann. Please let me know if you would like me to send any medical records. I look forward to hearing from you. Thank you so so much!! We cant say thanks enough!
Sincerely,
Rick and Cristy Spooner
Rancho Santa Margarita, CA 92688
cristyns@loan-closers.com
cell: 949-456-5029
My name is Cristy Spooner and I need your help. I would first like to say THANK YOU in advance for reading our story and trying to help our family.
We have three daughters, Cali (11yrs) Rae (4yrs) and Ryann (10 months). Cali and Ryann both have damage to their cerebellum which we have learned is an extremely rare neurological disorder. Our doctors told us that they had never seen anything like Cali before. Fast forward 11 years later, we now have a 10 month old little girl, Ryann, who is unfortunately showing damage to her cerebellum as well. Our doctors now are telling us we could be the first family to name a disease. We are lost and need help finding answers to help our little girls.
Here is a brief history of our story:
Cali was four months when she began having seizure like body tremors. She was hospitalized for a few days at UCI during which video EEG was obtained and the movements were determined not epileptic. An MRI scan of the brain revealed non-specific cerebellar abnormalities. A full workup of tests were unrevealing. When she was 13 months old she was seen at CHOC of Orange for a cerebellar biopsy. The biopsy showed increased blood vessels and thicker tissue which was not specific and no specific diagnosis was given. Two years later Cali was evaluated at the Mayo Clinic in Rochester Minnesota where another EEG and MRI study was obtained and still no specific diagnosis was given.
After years of trying to find an answer for Cali we decided to continue therapies, which include PT, OT, Speech, Horseback Riding therapy, Aquatic therapy, cranial sacral therapy and anything else we could try to help her. She is a bright and happy young girl. However, her developmental delay grows larger the older she gets. She cannot walk on her own or speakclearly. She in special education in the 6th grade. She has many problems with her gross motor skills. The older she gets the more frustrated she becomes.
We recently took Ryann in for her 9 month check up and our pediatrician recommended we see a neurologist because she was showing signs of seizure like movements (similar to Cali's). She is also delayed in her gross motor and fine motor skills. She cannot sit on her own or crawl. She was hospitalized for a few days at CHOC Mission during which video EEG was obtained and the movements were determined not epileptic. An MRI scan of the brain revealed nonspecific cerebellar abnormalities. A full workup of tests were unrevealing. Again no specific diagnosis.
My husband Rick and I feel helpless at this point. We are determined and motivated to find some answers to help our little angels, Cali and Ryann. We are struggling everyday to help Cali live her life to the fullest. It breaks our hearts that she cannot run and play or communicate with her peers. Now to think of the life ahead of Ryann is heartbreaking. We believe in our hearts, that there is someone somewhere that might be able to give us some answers. We are hoping and praying that someone has seen something similar to our two daughters' cases. We would be so grateful for
any help you can offer us.
I have included the MRI images for Cali and Ryann. Please let me know if you would like me to send any medical records. I look forward to hearing from you. Thank you so so much!! We cant say thanks enough!
Sincerely,
Rick and Cristy Spooner
Rancho Santa Margarita, CA 92688
cristyns@loan-closers.com
cell: 949-456-5029
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