Warrior and Princess Cali- updates

Cali had another 10 viles of blood taken yesterday to test for another panel of genetic diseases. This panel is the Ataxia panel...not that anyone knows what that means. Basically we are ruling out another chunk of the endless named diseases out there. Picture a wall of balloons and we are throwing darts to pop each one and maybe, just maybe, we will find the diagnosis in one of those balloons. Our neurologist doesn’t think there are any named cases out there the same as Cali and Ryann. Which brings us back to our doc’s original idea that they may name a gene after our family. The Spooner Family Gene, oh jeez! We do not want that of course because then there will not be any other cases to compare to. We have to rule out every rare disease out there and from what i understand there are roughly 7,000 just in kids so this could take a lifetime if you ask me. Our geneticist doesn’t seem to know which direction to go. We just have to keep throwing darts at those balloons and see what we find i guess. Cali is the guinea pig and if anything comes out positive then Ryann will be tested. Cali is such a trooper. She didn’t even cry and they only used one vein! The nurse was shocked at what a great patient she was. She drank a juice box after and went to school Easy Schmeezy! What a warrior that little girl is!

As far as her foot reconstructions go she is done! Whoo hoo! She is out of the casts, into her braces and walking strong in her walker again. Doc says it will be about a year and a half for healing before she isn’t in any pain. Again, what a trooper! We are up and running with her walker and so is Ryann. It is funny to have Cali so tall in her walker and Ryann so little in hers. What a family we are :-). We are going to have to train Rae on how to walk with Ryann so we can handle the both of them at the same time. We can do it!

Lastly, We finally got what we were fighting for with the school district. We are happy to say that the district is hiring an aide for Cali next year. We know she deserves an aide by her side so she can have the opportunity to move about the campus freely and happily. So we will see how it works out. We are hopeful, happy and her biggest advocate and fan.

What is in store for Cali ??

Rick and I had our first meeting with the head of Adult Transition of Capistrano School District yesterday. He has been with the district and the program for over 30 years along with most everyone else involved. These people that run this program seem to really care. Even though they more than likely get paid crap and the Federal Government pays roughly $600 per year per kid they keep going. They are working hard everyday to help 116 young adults age 18-22 years old transition from school into the community. These young adults range from medically fragile to almost independent-driving a car and living in a group home. These young adults go to a college campus everyday 9am-3pm and work in the community. They have a schedule where they may work on reading in the class in the am, then on to working on life skills such as “how do you act in an interview” or what is inappropriate to say to a stranger or friend. Basically they learn how to be a good citizen in the community. Then after their morning lessons a few kids go with one teacher to maybe Costco food preparation, or maybe Howies Game Shack to do whatever is assigned. Each teacher travels with a handful of student, no matter what their disability, to a job site and they do what they can depending on their abilities. Another part of their day includes physical education such as swimming, etc. Then at 3pm the bus takes each student home to their doorstep.

We found out yesterday what Cali has in store for her at age 18-22 years. It was a huge question mark for us. We talk little about it. What happens next? Will Cali live with us for all of her life? Now we have to think about Ryann too. It’s hard to look at the big picture. There are so many unknowns and how is it even possible? But as most parents plan for college we have to plan too. We are even looking at Rae at 5 years old and asking ourselves what is she good at and in the back of our minds what will help pay for college? So it is only fair and obvious we do this for Cali and Ryann. Things will change and we are positive of that. Its still good to know and feel like we have as much insight and information as possible. So yesterday in our meeting we learned that Cali will have school from ages 18-22 years and she will be in the community and really focusing on the quality of life. Income or taking care of her own kids will not be a concern for her. She will live her life as HAPPY as possible, INVOLVED as possible and ACTIVE as possible and we will LOVE her as much as possible. The future or the big picture in its rough draft is sometimes overwhelming to look at. All we can do is look at what we see in a positive light and keep on smiling….

From NOW to the Big Picture

In high school I read the book Power of Now. Since I was 15 years old I have tried my best to live by the lessons of that book. The lessons are to live in the moment of right NOW and soak it all in; don’t waste my time looking at the past because it is in the past and finally don’t project or worry about the future because it’s not NOW. I consistently remind myself to live in the moment, enjoy the moment and appreciate the moment I’m in. The challenge I’m having now is that I need to look at the big picture. Cali is going to be a teenager this year and she has only one year left of Middle School. Instead of class picnics we are having meetings talking about adult transition and what happens after school ends for her at age 25. In this meeting are Cali's teacher, the other special needs parents and the guest speaker, who is presenting a video from 1970 showing college students who have various handicaps bagging groceries or dusting library books. My wheels start spinning in my head. I can see my moments of NOW expanding to the big whole picture....the future. Wow what a scary and intimidating thought. We are not thinking about colleges or sports or even academics. Instead we are having to think about what happens next for Cali after school? Will Cali live with us forever? Will she live in a group home? What skills does she need to acquire so that she can be out in the community independently and preforming at a job. Will Cali ever drive? Will she have a boyfriend? Even will she have kids? What will Cali be capable of doing when her school ends at 25 years old? I sit there in awe and listen to the speaker tell us all about the work programs available and how we should already be putting Cali on a list because sometimes the group homes have a three year wait. He tells us that we have to start planning, looking ahead and working with Cali to get her as independent and functional as possible. I can’t help but think that she has so much to learn its overwhelming. As of right now she has no concept of money or time. She is extremely dependent on us and I don’t see that changing. We dress her, make her meals, wipe her butt! This big picture is now open wide with questions it is crazy scary. I just don’t see much light at the end of the tunnel if we are expecting she is going be independent and functional on her own. I start to feel like I’m going to have a panic attack. I feel like I am gasping for someone to come and save me from drowning. Someone to hold my hand and tell me all the answers so thinking ahead will be less scary. Nobody comes to our rescue and I don’t faint on the conference table which is always good. Instead I gather my thoughts and tell myself one thing at a time, one day at a time. I will sit down with our team of therapists, doctors, teachers, family and friends and we will work together to map out goals and desires for Cali. I have to accept that Cali ‘s future is different and our family’s future is different. I have to let go and trust that with love, hard work and an open mind everything will be ok no matter what the outcome or abilities. Cali's life isn’t easy to plan but really I can plan all day and night until my face turns blue but the ONLY THING I AM SURE OF IS THE MOMENT IM IN RIGHT NOW. There’s something to be said about the feeling of contentment and happiness and living in the NOW.

Here we go again!

The countdown and preparation begin for Cali's second foot surgery this Tuesday. I am not referring to preparation that includes packing comfortable clothes to stay the night in the hospital or bringing my slippers to walk in the halls. I am referring to mental preparation. It takes a lot to mentally prepare for your child to go into surgery. Hospitals, doctors, anesthesia are all very scary. When you become a parent you really don’t realize how tough it can be. Every age has its challenges. We can read parenting books to give us an idea of what we are about to face. The books cannot prepare you for the feeling when your child is in the hospital. No matter what age your child is as a parent we cringe at the thought of having to go through the emotional pain of watching our child in physical pain. Mostly because there isn’t anything we can do but stand by the bedside and hold their hand and pray for them to get better as quickly as possible. As a parent we have to be our child’s strength. We have to force a smile and wipe away our tears and tell them its ok and they will feel better soon, we promise!

Sweet Cali is so strong and she does so well with all that she has goes through. This is her third surgery. Her first was when she was barely one year old and she had a cerebellum biopsy. The doc made about a 6inch incision in the back of her head and removed a sample of her cerebellum (brain) tissue in hopes they could determine a diagnosis after testing the tissue. This little tiny baby went through brain surgery and when she woke up for the first time she opened her eyes and smiled her huge beautiful smile at us. The doctors and nurses were shocked at her shining happy spirit during such a serious surgery. Our biggest hurdle through it all was that Cali caught pneumonia in the hospital and at 11 months old had a fever of 104. We had to keep in her diaper and put ice rags on her chest to keep her temp down.

Her second surgery was this past October for her first foot reconstruction. Again she woke up from her surgery in the recovery room, opened her big blue eyes and smiled brightly at the nurse. Her smile faded quick as she realized how sick she was feeling and how much pain she was in. Between the morphine drip and Motrin nothing could keep her comfortable. Her foot and leg were in excruciating pain. Rick and I felt helpless and I cried a lot out of desperation for something to stop her pain. She was on an IV for fluids and kept wetting herself and the adult diapers the hospital gave us were not working. So in all her pain we had to move her to change the bed sheets. She would scream in pain as the nurse with my help would try and move her. The worse moment of all was when during one of the sheet changes the new night nurse accidentally spilled her blood pump that was in her leg to drain the blood for the first day from her incisions. As she is crying in pain the blood is spilling everywhere. I could have strangled that nurse!! I almost did ...

So now this Tuesday Cali will go through surgery number three. She will go through her second foot reconstruction surgery. Here we go again. I think back to all we have gone through good and bad from each surgery and mentally prepare myself for the new challenging moments we will face and also what we will do to avoid the past bad experiences. I have my mental list of do's and don’ts. The biggest challenge is the not knowing. Not knowing what crazy things can come up because they always do. All we can do is wipe away our fears and tears and hold her little hand and tell her its going to be ok and she will feel better soon. We will shower her with love and focus our strength and positive thoughts upon her. We will get through this and we will come out of it stronger and wiser.

Who is Cali's best friend?

Cali needs a best friend too. As I sit with the school psychologist he asks me who Cali's best friend is? This questions hits a nerve in me more than any of the other questions on his never ending questionnaire. He runs down the list and every area is the same, she scores in the same range. The reality is Cali is very delayed. We are in the process of getting exact scores now but I would estimate she is at a 3 year old level in most areas and she is 12. Cali is getting tested because we requested an one on one aide for her and the school district came back with the solution of doing her Triennial Review a year early, which is a big deal I must say. So we will see what recommendations her teachers and therapists and school psych have and we are hoping and praying she can get more services. Our goal is for Cali to have a strong team of motivated, loving and skilled people that support her as much as possible. Cali is in middle school now and she deserves for all of us to come together and take a close look at how we are teaching and guiding her. I am a FIRM believer in it takes a village to raise a child and we have three kids so it really requires an entire tribe.

Back to the original unnerving question: who is Cali's best friend?" I immediately think of beautiful sweet Cali. She looks into your eyes and you can see she knows what's up. She is a special girl and she touches people in a way like no other. The challenge here is it takes special attention to stop, slow down and give Cali the one on one connection or to try and really understand her. Its a lot to ask from an adult so a child her age is really pushing it. So this really is a loaded question.

My answer would have to be when it comes down to it we all have to be Cali's best friend. Just like typical best friends you bond and learn different lessons from different people. Since Cali is so delayed it takes much more time and patience to teach her something that would typically be easy to learn. So I am asking my friends, family and anyone that has the privilege to meet sweet Cali to please look into her eyes and be her best friend. Give her something to grow from. Leave a legacy in her life. Cali needs as many best friends as she can possibly have because her path of life requires support and love from others. She cannot make it alone. To all of our friends and family that love Cali as much as we do we say thank you from the bottom of our hearts. She needs us, all of us, all of the time, to be her best friend. Everyone deserves a few :-).

overwhelmed and emotional but still smiling

Wow! Talk about overwhelmed and emotional. I am doing everything I can to hold it together but man is it hard. I cant stop worrying and projecting and feeling like I'm going to explode with tears. I have to tell myself to remember its all about perspective. I have to see the bright side and not the crazy wicked dark side. Thank God I have such amazing friends and family. We have so much love in our life that I can't ever complain. We are blessed with a beautiful family and when we all cuddle up together before bed at night I close my eyes and take a deep breath in and remember that beautiful feeling of love. I carry that through my day and all seems better.

The major cause of worry is Cali goes in 10/19 for her first foot surgery. She walks on the insides of her feet and she has very flat feet. She is in pain everyday and even though she is making progress with her balance and walking, she crawls because her feet hurt her so bad. We have tried every brace possible since she was 1 years old and the pain just keeps getting worse. We have now resorted to surgery.

We check in 5am this Tuesday at CHOC in Orange and the surgery is 3 hours long. We will stay with Cali in the hospital for 1-2 days. She will be in major pain and I am hoping the pain meds wont make her sick. She will wear a cast for approx 8 weeks, then move to a walking cast and then to a brace. Once she is strong enough to bear weight we start all over again on the other foot. Final outcome after about a year of surgery/recovery Cali will hopefully be able to push forward on learning how to walk on her own.

Other concerns or I should say "projects":

-- We have been dealing with the school district to make sure Cali is getting the appropriate education that she deserves which let me tell you is the biggest frustration of them all. I feel so helpless up against the teachers and district who all say Cali is in a great program and she doing great. Like we dont know as her parents??? I KNOW if what they tell me is true or if they are bullshitting us and letting Cali sit in her chair in the corner of the class all day learning nothing. The problem is we have to prove it. The school district doesn't make changes based on motherly instinct unfortunately.

-- We meet with the neurologist again tomorrow so she can tell us she still knows nothing.

-- We are still in the middle of Genetic testing which so far has shown us nothing. They will continue to throw the darts at the balloon wall of known diseases which is never ending. Who knows if we will ever have a diagnosis.

As I type this I remember the great quote : Be kinder than necessary because everyone you meet is fighting some kind of battle. I know this is true. We are all fighting the battle of life. Its those moments that make us feel good and we remind ourselves to look on the bright side of life and soak in feelings of enjoyment and love. We go on fighting with a smile.

IT'S TIME FOR A CHANGE! IT'S TIME FOR ANSWERS!

The hardest part of having a child, or in our case children, with a rare disease is that all we want to do as loving parents is help our little girls and we don't know how or what do to. No one can help us because no one knows any better than we do what is the matter.

Cali and Ryann have the most beautiful knowing eyes. They shine with love and purity. Everyone who meets them falls in love with them. You feel loved when you are with them. They are truly angels sent to our family to bring us a message. A message that life isn't all about ME. Its about raising our sweet daughters to grow up and be the best they can be. Life is about passing along what we have learned to others after us to make our world a better place.

We are all faced with a huge problem. There are children being born everyday with new unknown rare diseases and we don't know what the cause or how to stop it. Its unfair and frustrating that we do not have enough attention and therefore funding for research to find some answers. We are the floaters in the world of diagnosis. ITS TIME FOR A CHANGE!!! Its time to bring awareness and its time to find answers.

Cali and Ryann work so hard to do the simplest things. Cali wants to run and play with her friends. She wants to talk and express herself. She wants to sing the words to her favorite songs. Ryann wants so badly to crawl. She pulls and fights with all of her might to do it. She wants to call out Mamma and Sissy and Night Night and Bye Bye. Our little girls cant do these simple things that come naturally to our sweet Raelyn. We are so lucky that Rae is the best little and big sister of all. When she says her prayers or makes a wish she says "I wish everything to be ok with my sisters". At four years old she already knows and wants the same as all of us that know and love Cali and Ryann. We want everything to be ok too. We want our little girls to do those simple things. We have to find answers and help. We have to keep searching and trying our best to stand up and say IT'S TIME FOR A CHANGE! IT'S TIME FOR ANSWERS!

I have been posting about Pepsi's amazing gift. They are giving away $1,000,000 to the best ideas that can make our world a better place. Children's Rare Disease Network has submitted our fight for a change, our quest for answers. Vote4Hope is in the running for $250,000 for funding for research for children with rare disease. It's a small step for a big reward. I know that I have been voting everyday and I have been reminding everyone to do so too. Its these opportunities that give us the chance to contribute whatever we can to make a difference. Please remember to text 102614 to 73774 for your vote everyday for the month of September.