Tuesday, October 28, 2008

Chocolate Sugar High, 6 year stats and video!

Last week was a big week for our Jenelle as we celebrated her 6th Birthday. On the evening of her birthday, we celebrated with double chocolate cake after dinner. Jenelle really enjoyed that, and then experienced a sugar high beyond belief. Fortunately it was short lived and Jenelle didn't have a problem getting to sleep. remind me next year to avoid chocolate so close to bed time.

On Friday, Jenelle had her 6 year check up with Dr. Patel. Jenelle is now a whopping 50 pounds, and 48 inches tall. 80th percentile for weight and 50th percentile for height. The school nurse had told me that Jenelle is showing signs of Scoliosis, so Dr. Patel put in for some x-rays. We will have those done this Friday afternoon. Dr. Patel also put in a request for the endocrinologist regarding the precocious puberty issue, and warned me we could be looking at a 6 month wait as CHOC's endocrinologist are overwhelmed. Jenelle got 4 shots and is now finally caught up on her immunizations.

We had a very busy weekend this weekend and celebrated Jenelle's birthday at the Storyteller Cafe at Disney's Grand Californian. Jenelle usually loves looking around and the attention from the characters, but this time she was very cranky. We think it could have been because of her shots. Also this weekend, I finally got an opportunity to catch Jenelle vocalizing on video! She was in her room playing by herself as I was trying to catch a nap in the other room. All of a sudden, I could her her small voice talking to herself. I grabbed the video and tried to sneak up on her to catch it on video, but unfortunately stepped on a toy that made music. At the very beginning of the tape, you can hear her saying "la la la la la", but the she stops when she heard the toy, and then decided not to perform. The video is below.

Sunday, Jack and Jenelle were "welcomed" into the Catholic Church at the monthly baptism ceremony. Jack is in 2nd grade this year and will be going through First Communion. Because they both were baptized in the Episcopal Church, and because the Catholic Church recognizes the same sacrament, in order for Jack to continue with First Communion his previous baptism had to be officially welcomed into the Catholic faith. While Jenelle will probably not go through First Communion, we thought it was special to have them both welcomed at the same time.

Here are some wonderful photos from this past week. Jenelle and her chocolate sugar high with Daddy and Jack sharing on the fun, and a photo of the Welcoming ceremony. Also, the video below is one that is sure to warm your heart. Right at the beginning you will hear Jenelle's sweet angelic voice. Enjoy!

Jenelle's Chocolate Smile.

Daddy & Jack enjoying cake.

The family after the "Welcoming" ceremony with Father Bill.

Friday, October 24, 2008

Sarah Palin on Special Needs

In case you missed it, Vice President Nominee Sarah Palin gave a speech today where she outlined the McCain/Palin plan for special needs. Here is the text of that speech.

October 24, 2008
ARLINGTON, VA -- Governor Sarah Palin today delivered the following remarks as prepared for delivery in Pittsburgh, PA, at 9:00 a.m. ET:

Thank you all very much. I appreciate the hospitality of the people of Pittsburgh, and I'm grateful to all the groups who have joined us here today. The Woodlands Foundation, the Down Syndrome Center at the Children's Hospital of Pittsburgh, Autism-link, the Children's Institute of Pittsburgh: Thank you for coming today. And, above all, thank you for the great work you do for the light and love you bring into so many lives. John McCain and I have talked about the missions he'd like me to focus on should I become vice president, and our nation's energy independence and government reform are among them.

But there is another mission that's especially close to my heart, and that is to help families of children with special needs. And today, we'll talk about three policy proposals that are going to help us fulfill our country's commitment to these children: more choices for parents, fully funding IDEA, and efforts to reform and refocus.

Too often, even in our own day, children with special needs have been set apart and excluded. Too often, state and federal laws add to their challenges, instead of removing barriers and opening new paths of opportunity. Too often, they are made to feel that there is no place for them in the life of our country, that they don't count or have nothing to contribute. This attitude is a grave disservice to these beautiful children, to their families, and to our country -- and I will work to change it.

One of the most wonderful experiences in this campaign has been to see all the families of children with special needs who come out to rallies and events just like this. We have a bond there. We know that children with special needs inspire a special love. You bring your sons and daughters with you, because you are proud of them, as I am of my son.

My little fella sleeps during most of these rallies, even when they get pretty rowdy. He would be amazed to know how many folks come out to see him instead of me. When I learned that Trig would have special needs, honestly, I had to prepare my heart. At first I was scared, and Todd and I had to ask for strength and understanding. I did a lot of praying for that understanding, and strength, and to see purpose. And what's been confirmed in me is every child has something to contribute to the world, if we give them that chance. You know that there are the world's standards of perfection, and then there are God's, and these are the final measure. Every child is beautiful before God, and dear to Him for their own sake.

And the truest measure of any society is how it treats those who are most vulnerable. As for our baby boy, Trig, for Todd and me he is only more precious because he is vulnerable. In some ways, I think we stand to learn more from him than he does from us. When we hold Trig and care for him, we don't feel scared anymore. We feel blessed.

Of course, many other families are much further along a similar path -- including my best friend who happens to be my sister, Heather, and her 13-year old son Karcher, who has autism. Heather and I have worked on this for over a decade. Heather is an advocate for children with autism in Alaska. And as governor, I've succeeded in securing additional funding and assistance for students with special needs. By 2011, I will have tripled the funding available to these students.

Heather and I have been blessed with a large, strong family network. Our family helps make sure that Trig and Karcher have what they need. But not everyone is lucky enough to have that strong network of support. And the experiences of those millions of Americans point the way to better policy in the care of children with special needs. One of the most common experiences is the struggle of parents to find the best and earliest care for their children. The law requires our public schools to serve children with special needs, but often the results fall far short of the service they need.

Even worse, parents are left with no other options, except for the few families that can afford private instruction or therapy. Many of you parents here have been through the drill: You sit down with teachers and counselors to work out the IEP -- an individual education plan for your child. The school may be trying its best, but they're overstretched. They may keep telling you that your child is "progressing well," and no extra services are required. They keep telling you that -- but you know better.

You know that your children are not getting all of the help they need, at a time when they need it most. The parents of children with special needs ask themselves every day if they are doing enough, if they are doing right by their sons and daughters. And when our public school system fails to render help and equal opportunity -- and even prevents parents from seeking it elsewhere that is unacceptable.

In a McCain-Palin administration, we will put the educational choices for special needs children in the right hands their parents'. Under reforms that I will lead as vice president, the parents and caretakers of children with physical or mental disabilities will be able to send that boy or girl to the school of their choice -- public or private.

Under our reforms, federal funding for every special needs child will follow that child. Some states have begun to apply this principle already, as in Florida's McKay Scholarship program. That program allows for choices and a quality of education that should be available to parents in every state, for every child with special needs. This process should be uncomplicated, quick, and effective -- because early education can make all the difference. No barriers of bureaucracy should stand in the way of serving children with special needs. That's why John and I will direct the Department of Education to clarify the statute administratively.

We'll make explicit that when state funds are portable, federal funds are fully portable. We're going to make sure parents have choices and children receive the education they deserve. Even the best public school teacher or administrator cannot rightfully take the place of a parent in making these choices. The schools feel responsible for the education of many children, but a parent alone is responsible for the life of each child.

And in the case of parents of children with disabilities, there are enough challenges as it is, and our children will face more than enough closed doors along the way. When our sons and daughters need better education, more specialized training, and more individual attention, the doors of opportunity should be open. Like John McCain, I am a believer in providing more school choice for families. The responsibility for the welfare of children rests ultimately with mothers and fathers, and the power to choose should be theirs as well. But this larger debate of public policy should not be permitted to hinder the progress of special-needs students.

Where their lives, futures, and happiness are at stake, we should have no agenda except to ease the path they are on. And the best way to do that is to give their parents options. In a McCain-Palin administration, we will also fully fund the Individuals with Disabilities Education Act.

To his great credit, it was President Gerald Ford who signed the legislation that became the IDEA -- establishing new standards of respect and inclusion for young Americans with disabilities. From that day to this, however, the federal government's obligations under the IDEA have not been adequately met. And portions of IDEA funding have actually decreased since 2005.

This is a matter of how we prioritize the money that we spend. We've got a three trillion dollar budget, and Congress spends some 18 billion dollars a year on earmarks for political pet projects. That's more than the shortfall to fully fund the IDEA. And where does a lot of that earmark money end up? It goes to projects having little or nothing to do with the public good -- things like fruit fly research in Paris, France, or a public policy center named for the guy who got the earmark.

In our administration, we're going to reform and refocus. We're going to get our federal priorities straight, and fulfill our country's commitment to give every child opportunity and hope in life. For many parents of children with disabilities, the most valuable thing of all is information. Early identification of a cognitive or other disorder, especially autism, can make a life-changing difference. That's why we're going to strengthen NIH. We're going to work on long-term cures, and in the short-term, we're going to work on giving these families better information.

Once a condition is known, parents need the best and latest information on what to expect and how to respond. This service is also provided for under the IDEA. And we will make sure that every family has a place to go for support and medical guidance. The existing programs and community centers focus on school-age children -- overlooking the need for assistance before school-age. But it would make a lot more sense for these centers to focus as well on infants and toddlers.

This is not only a critical stage for diagnosis; it can also be a crucial time to prepare the family for all that may lie ahead. Families need to know what treatments are most effective, and where they are available, what costs they will face, and where aid can be found, and where they can turn for the advice and support of others in their situation.

As Todd and I and Heather know, there's no substitute for the friendship of those who have been where we are now. The IDEA is also intended to serve teens and young adults with special needs. And here, too, there is an opportunity to reform and extend the reach of federal support under the IDEA. By modernizing a current law, the Vocational Rehabilitation Act, we can better serve students with disabilities in our high schools and community colleges. This will require reform by the states as well.

Just as the federal government expects proven results in the progress of other students, we must require results as well in the achievements of students with disabilities. And the result we will expect is simple: that every special-needs student be given a chance to learn the skills to work, and enjoy the freedom to live independently if that is their choice. As families across America know, the care of special-needs children requires long-term planning, and especially financial planning.

A common practice among these families is to establish financial trusts. These are known as special needs trusts, covering years of medical and other costs, and for parents they bring invaluable comfort. Understandably, then, many families with special-needs children or dependent adults are concerned that our opponent in this election plans to raise taxes on precisely those kinds of financial arrangements.

They fear that Senator Obama's tax increase will have serious and harmful consequences -- and they are right. The burden that his plan would impose upon these families is just one more example of how many plans can be disrupted, how many futures can be placed at risk, and how many people can suffer when the power to tax is misused. Our opponent has an ideological commitment to higher taxes. And though he makes adjustments on his tax plan pronouncements seemingly by the day, his commitment to increase taxes remains the same.

John McCain and I have just the opposite commitment. We intend to lower taxes, promote growth, and protect the earnings and savings of American families. Not long ago, I spent some time at a place in Cleveland called the Michael T. George Center, a beautiful home for adults with Down Syndrome and other disabilities. I met Michael George, too, a boy of five with Down Syndrome. Michael is a healthy, sweet, joy-filled little man -- and I saw in him all the things I wish for Trig in just a few years. Michael's parents, Tony and Kris George, are advocates for children with special needs in their community. They are thinking far ahead, in their own boy's life and in the lives of others. They named the center after their son. It's a public-private partnership. This welcoming place -- and so many others like it -- shows the good heart of America.

They are places of hope. They are the works of people who believe that every life matters, everyone has something to contribute, and every child should have things to look forward to, and achievements to point to with pride and joy. As many of you know better than I, it can be a hard path, and yet all the more joyful and productive when the barriers are overcome.

John McCain and I have a vision in which every child is loved and cherished, and that is the spirit I want to bring to Washington. To the families and caregivers of special-needs children all across this country, I do have a message: For years, you sought to make America a more welcoming place for your sons and daughters. And I pledge to you that if we are elected, you will have a friend and advocate in the White House.

Thank you all, and God bless you.

Thursday, October 23, 2008

Mental note to self...

Remind me next year not to give Jenelle chocolate cake at dinner before giving her a bath and putting her to bed! She wiggled and giggled so much, I thought she was going to seriously hurt herself in the bath, and then I worried that she'd never fall asleep!

Thankfully, her drugs kicked in! ;)

Wednesday, October 22, 2008

Happy 6th Birthday Jenelle!

Six years ago today our sweet little girl made her way into the world and into our hearts. We are so blessed to have her in our lives, and for all that she has accomplished. Here are some recent photos to share.

This photo was taken Sunday afternoon on Jenelle's favorite ride at Disneyland - the tram! We went to Disneyland after participating in the CHOC Walk earlier that morning. Not the smile we got last year, but then again it had been a long day and she was worn out.

Here are the kids at the pumpkin patch last Saturday. Jenelle is wearing her new "chewelery", which is a device to help keep her from biting her arms and shirt. She really likes it and is using it appropriately.

Always ready to pose for the camera!

Last night, I made cup cakes for Jenelle to share with her classmates. Today the typical students will be in her class for inclusion. This is the first time I have ever made cup cakes for Jenelle... simply because with her improved eating skills, she can actually eat them now! Of course, Jenelle's favorite is chocolate.

And here is one of the family at the crack of dawn watching the sun rise shortly before the beginning of the CHOC/Disneyland Walk in the park last Sunday. Thanks to all who sponsored our team, and to the family for being a good sport to wake up at 5:30!

Happy Birthday Princess Boo!

We love you!

Monday, October 13, 2008

The Mommy Wars have entered Politics!

A few weeks ago, I got an e-mail from a mom I know in one of my special needs Internet support groups. The e-mail asked me to join her in a group called, "Special Needs Moms against Sarah Palin." While I am friends with this mom in all that we've shared and been through together as special needs moms, this is one request from her that I couldn't support.

Before I go further, I will let you know now that I am a registered Republican, and I have already cast my vote for McCain/Palin via absentee ballot (sorry, you can't change my vote now!) But this issue is more than just politics to me. If I were supporting "the other guy", I would still be offended by a group of moms opposing another mom for her decision to follow her career. And by no means do I consider myself to be a feminist. I simply believe that a woman can have both; a career and children. And I know for a fact - it is possible that a Mom can work full time and raise a child with special needs. Especially a child with complex medical issues.

I will admit, I had no choice when I had to continue working when Jenelle's medical issues became a priority. My job carries the medical benefits we desperately needed at the time. I didn't have the luxury of quitting my job to attend to her needs 24/7. I had to find a way to make it work.

The first glaring questions about my continuing to work came from Jenelle's first neurologist. He flat out told me to quit my job so I could enjoy the few months or years we had left with Jenelle. This doctor refused to try the Ketogenic Diet for Jenelle, because in his words to me, "The fact that you are still working tells me you are not committed to your child and that you are not committed to do this diet!" It was horrible, and I cried for days. I felt like my job was an albatross hanging from my neck. Something I couldn't get rid of because I couldn't pay the medical bills.

And then, I received some of the best advice I'd ever heard from another special needs mom that works full time. She told me, "Kelly, your job is to be Jenelle's mother. You are not her doctor, nurse, teacher, therapist, bus driver, aide or social worker, you are her mother. That means you are the one who loves her. You get to kiss her after a blood draw and to hold her in the night as she cries or comfort her after a seizure. You are her Mother and the only requirement of you is to love her unconditionally and to advocate for her passionately. Let the others do their job!"

With that advice, it became clear to me. In the world of special needs, none of us can do it alone. While I admire all the special needs moms who do stay home and who's lives revolve around the complex medical schedule of their child, I am thankful that I have found what works for me. I am thankful for Jenelle's wonderful therapists, teachers and doctors. And to borrow a phrase from that woman in the "other" political party, it takes a "village" to raise a special needs child.

One last thought... why is it the Mom has to be the one to stay home with the sick child? Why can't a man be as involved or more in the life of a special needs child? I know quite a few Fathers who play a very significant role in the life of their special needs child. Brett is one of them. While the divorce statistics are very real when it come to raising a special needs child, a couple has to take parenting to another level and become team players to work together when they have a special needs child. Eighty percent end up divorced, ninety percent if that special needs child dies. Those statistics are frightening, and very real! If parents can't work together, then they are only working against themselves.

So while this election has surprised me at times, I was shocked to see the discontent some women have for the choices other women make. Who are we to presume Sarah Palin isn't involved in the lives of all of her children? Who are we to demand she stay home and attend therapies with her disabled son? I'm positive Sarah Palin has the resources behind her to help her make the best decisions in regards to her special needs child. Maybe more than the average American. Who are we to question her love and devotion, when other families find it can work in non-traditional ways.

Why do women need to beat each other down for the choices they make? Personally, I'm tired of liberal women defining what women should be. Yes, I identify greatly with Sarah Palin. We are both working mothers with nothing but love for family and love for this country. God bless any family dealing with issues surrounding special needs and the individual choices special needs families have to make each day. Who are we to judge one another?

Thursday, October 09, 2008


Last night, Brett and I were sitting at our dining room table chatting about the events of the day, when Jenelle walked up to the table, put her hands down on the table, looked at her Daddy and said, "la la la la la la la la la!"

We stopped talking mid sentence. I think my mouth dropped open. We stared at Jenelle and then looked at each other in disbelief. And then as if sensing our doubt, she did it again... and again!

Brett thinks it sounded more like a "ya ya ya ya ya ya" and I thought it had more of a "la" sound. Either way, she was definitely vocalizing. I immediately went to grab the camera to capture it on video and unfortunately stage fright took over. I am determined now however to catch it on video and will share it all with you when I do! Brett gave her the biggest hug and said, "Sweetie, we didn't know you had so much to say!" Which of course made her giggle.

Sometimes I wonder if Jenelle reads my updates as I just recently posted about my concern as to whether Jenelle will ever find spoke language. Or maybe Dr. Shields (who is the best pediatric neurologist in the world) is right and that given a little more time, Jenelle will continue to amaze us with her continued progress and speech for Jenelle is not a lost cause! Or maybe all of you are sending up the right prayers for our girl (keep it coming!) No matter what the reason, we will gladly take anything we can get from Jenelle.

As Jenelle's 6th birthday approaches, I can't help but look back on all that we lost with Jenelle because of the inadequacies of her first neurologist. What more could she be doing if we hadn't lost all that time searching for answers and jumping through hoops?

It took three years to see her smile, five years to see her walk, and now almost six years to finally hear her voice. A beautiful, angelic, sweet little voice trying desperately to say something to her Daddy.

Thank you for the thoughts and prayers - please keep them coming! ;)

Friday, October 03, 2008

Jenelle's Tri Annual IEP

(It has taken me a few days to draft this for you all. There was so much to discuss about the IEP, and our lives have been very busy of late. I'm sorry this update is long, but there are many good things to report. Enjoy!)

“Before we start this meeting, I’d like to say something. I hope you know that your daughter is an absolute miracle. In all my many years of being a physical therapist, I’ve had maybe one or two kids like Jenelle. I know that I should never put limits on a child, but when I first met Jenelle 3 years ago, I was convinced there was no way she would ever sit up, no way she could ever stand, and I certainly didn't expect she'd ever walk. Jenelle is an absolute miracle!” ~ Jenelle's Physical Therapist Sarah

An IEP meeting (Individual Education Plan meeting) is a meeting that takes place with teachers, parents, therapists and advocates where a n specialized education plan is discussed and put in place for a child. Every three years, a school district will "re-evaluate" the child in all areas of service, and then hold what is called the "Tri-Annual" IEP meeting. Jenelle's Tri Annual IEP meeting was held on Monday, September 21, and lasted 4 and a half hours. Jenelle's Tri Annual IEP went very well and all of Jenelle's current services will remain in place for another year. After discussing services, we reviewed each of her annual goals, and replaced the ones she has met with new ones. At times it got emotional when we acknowledged how much Jenelle has achieved in the last three year, and other times it was humorous when we discussed Jenelle's unique personality that is beginning to blossom.

So, what has changed with our girl in 3 years? Jenelle has many scattered skill levels. It is hard to pinpoint an exact age of development, but for the most part her scattered skills range from 3 months to 3 years old. By far the biggest changes were with her eating and gross motor skills. Jenelle has almost fully met all of the skills needed in Physical Therapy (gross motor skills) to qualify as having full independent function. She sits up, stands, walks with ease while using a walker at school and is slowly being taught how to use a cane. Once she has mastered stairs and uneven surfaces, Jenelle will no longer need Physical Therapy. Her therapist estimates we will achieve that sometime before her next Tri-Annual IEP. Jenelle is definitely showing consistent weakness on her left side. Although her MRI scans show no evidence of brain bleed, she consistently acts like a child who might have suffered a stoke at some point in utero. Her other biggest achievement - food. Food is a huge motivator for Jenelle, and was mentioned many times, by many different therapists. This kid loves to eat, and is progressing nicely and even mastering the use of a bent spoon. While we are no where near being independent from her g-tube, the changes in her diet and her ability to eat more table foods is comforting and makes our daily life a bit easier. (I no longer have nightmares of us having a major earthquake and me running out of jarred baby food or formula!) In all, Jenelle's gross motor skills have progressed from the developmental level of a 6 month old, to that of an 18 month to 2 year old.

The smallest area of improvement belongs with her fine motor skills. While I was hoping for larger improvement in that, Jenelle's fine motor skills have progressed from the developmental level of a 1 month old to the development level of a 3 to 6 month old in fine motor skills area. She ranks poorly on this mainly because she refuses to use her hands, and her inability to speak. Once they explained in more detail all of the things that need to be met with fine motor, I understood why she scored so low. At our last appointment with Dr. Shields, I asked if we were beyond finding verbal language for Jenelle now that she is older than age 5. Dr. Shields felt that due to Jenelle's delays, and her significant improvement since obtaining seizures control, it would be wise to give her until age 7 to find some spoken language. If after age 7, Jenelle still does not have any spoken words, it would be very unlikely that she will ever be able to speak. While at this point it is a long shot, at least there is some glimmer of hope. Dr. Shields felt it would be best to start to concentrate more on teaching Jenelle how to communicate with assistive technology,and her school has already started this a year ago. When I informed the IEP group of Dr. Shields' recommendation on the speech, they were relieved to hear his opinion, and decided to continue her speech therapy another year instead of dropping it altogether based solely on her age.

With every report from every therapist and teacher (PT, OT, Speech, Vision, PE, and Orientation and Mobility) I heard a lot of similar things; Jenelle is a beautiful and determined little girl who is very social, very busy and will do anything for food. And of course, as Murphy's law would have it, two days after Jenelle's IEP where I told the team it had been months since we'd last seen a seizure, Jenelle had a grand mal. Her first in many, many months. So far, we are watching things carefully and I am chalking this one up to maybe the molar issues. In all, Jenelle continues to do well and we are so blessed to have her involved in a wonderful program at school and through our County Department of Education.

Once we were finished setting goals for the coming year, my brain was mush. I couldn't believe the meeting had taken over 4 hours, but really it all went quickly as it was so fascinating to hear about all the wonderful things Jenelle can do. I left feeling very inspired and very hopeful for our little girl. As mentioned at the beginning of the IEP, Jenelle is an absolute miracle. We are so blessed to have her in our lives.

Thanks for the continued thoughts, prayers and support. As always, I'll keep you posted!