Music Video on being a parent with special needs

This YouTube video was shared on the Parent to Parent Listserv in Colorado. Had to share - made me tear up. It sure hits home.

Zach Fights Back Website Launch

We are proud to announce the launching of a specific website for Zachary!!

www.ZachFightsBack.com

It includes his full story, fundraiser event notifications, information on Cerebral Palsy, videos, links to his Twitter feed, Facebook page, and PayPal for donations

We will be constantly updating that site with information, photos, and more. This blog, Nate Dog's Blog, will still be in effect for regular blog postings. ZachFightsBack is just a specific site dedicated to our son and efforts to help him through various therapies. 

The website's launch is featuring our current "viral" fundraising campaign to get 1,000 people to donate $25 to the Zachary Charlan Benefit for Stem Cell Therapy in Germany.

My good friend, Scott Denney, created this amazing site for us and did the web design and the graphics. Our heartfelt gratitude and appreciation go out to him. He is an incredible visionary who has superb digital creativity. It is an honor to know and work with him. His company is called Swagger Vision. Check him out and please utilize his skills for any large, medium or small project you might have.

Had to share...

I had to share this message I received through our YouTube channel. Zachary's videos have been used previously for educational purposes, and now they are recently being used as a personal CP-reality connection point for nursing students. It truly amazes me how Zachary is having a truly positive effect in so many places!

I found your videos last year as I prepared a lesson for my 2nd year nursing students at ... Community College ... I found the videos to be just what my students needed to see to make growth and development and CP real to them. Many of them laughed with your family and cried as well... I was overjoyed to find new updates to the Zach life story as I prepared for this year's class presentation. He is doing so well. I have also shared your story and videos with a friend who has a child with brain injury after suffering hypoxia at birth. It is my hope they can find peace and God's strength's in their situation as you have in your situation. Thank you so much for sharing your story with the world. May God bless your family as you continue your journey.

Annadee Wright Photography

For all those who have commented or complimented the new family picture on the top of the blog, thank you very much. I want to let everyone know that the talented photographer is Annadee Wright, a dear friend of ours. We've known her and her husband, Nate, for a few years through a church small group.

Annadee recently found her talent of photography and is diving in full force. Her website is http://annadeewrightphotography.blogspot.com/ and she is in the Boulder/Denver area for anyone who wants family photos or other photography coverage of their special event.

You can see a few selections from our photo shoot here.

My personal favorite is this one: 

Zachary's Zombie Party!

The party was great and we appreciate wholeheartedly everyone who came and/or supported in any way. Special THANKS goes to Tracy and Kim Eastman who hosted the event at their home. We had a good showing of people, prizes were raffled off, and folks enjoyed fighting some zombies on Wii's "Dead Rising" and "House of the Dead" games. The winner of the costume contest went to Teresa who dressed as Alice, the zombie killer heroine from "Resident Evil".

Growth Spurt in Development & Conductive Education

Zachary has been improving by leaps and bounds once again! It's really an exciting time in his own personal development milestones. Zachary has a lot of books. Some are from gifts and some are from when I was a kid. We recently "discovered" (it had just been hiding for a few months) a picture/word book with an electronic side key to press the corresponding button and hear the word. After going over it with Zach maybe twice, he now knows the thing front and back!

We ask him to point out the "car" and he points it out on the page then immediately goes to the right and presses the car button to hear the word! Yes I'm a proud dad and to me this is a momentous moment for Zachary's development, no matter how silly it may sound. We have worked with him on vocabulary before, but nothing seemed to "click" unless it was words that had to do with food. But now he's learning quickly, in front of our eyes and it's sticking. He's showing his intelligence and it makes us so excited!

For the last month, we've had him enrolled in Conductive Education. This is an intensive therapy program out of Hungary that special needs teaches kids, mostly with cerebral palsy, how to live an independent life through gross and fine motor skills as well as speech/vocabulary/communication. It's an amazing program and we're very blessed to have one located about an hour away. Since he's started CE, it seems he's had an amazing spurt in cognitive recognition, attention span and learning as well as physical achievements! It was after he started CE that we had the breakthrough with the vocabulary recognition on the electronic book.

He attends Conductive Education once a week for 5.5 hours. The first week he screamed and cried the entire time. The next week his crying was reduced by half. The third week was reduced by half again. He's getting more and more used to it, but it definitely pushes him to his limits and forces him to really put forth effort physically.What is truly great about the program is it is completely different from what he's been doing in traditional therapy for two years. He's breaking out of his "comfort zone" and being pushed beyond.

Although it's heartbreaking to watch our precious son go through this as he screams and cries, we know it's all for the better in the long run as he is pushed to his limits to achieve and overcome his physical obstacles. It's a very integrated program involving both physical and occupational therapy along with preschool learning/education and speech/communication and vocabulary building.

I was updating a good friend of mine about Zachary's new therapy school and the struggles he was experiencing being pushed to his physical (and mental) limits. My friend recited an inspirational story to give me encouragement while watching Zachary's struggles. It's a story that you've probably heard before, but I re-post it here, in full, as found all over the internet:

Once a little boy was playing outdoors and found a fascinating caterpillar. He carefully picked it up and took it home to show his mother. He asked his mother if he could keep it, and she said he could if he would take good care of it. 

The little boy got a large jar from his mother and put plants to eat, and a stick to climb on, in the jar. Every day he watched the caterpillar and brought it new plants to eat. One day the caterpillar climbed up the stick and started acting strangely. 

The boy worriedly called his mother who came and understood that the caterpillar was creating a cocoon. The mother explained to the boy how the caterpillar was going to go through a metamorphosis and become a butterfly.

The little boy was thrilled to hear about the changes his caterpillar would go through. He watched every day, waiting for the butterfly to emerge. One day it happened, a small hole appeared in the cocoon and the butterfly started to struggle to come out. At first the boy was excited, but soon he became concerned. The butterfly was struggling so hard to get out! It looked like it couldn’t break free! It looked desperate! It looked like it was making no progress! 

The boy was so concerned he decided to help. He got scissors and snipped the cocoon to make the hole bigger and the butterfly quickly emerged! As the butterfly came out the boy was surprised. It had a swollen body and small, shriveled wings. 

He continued to watch the butterfly expecting that, at any moment, the wings would dry out, enlarge and expand to support the swollen body. He knew that in time the body would shrink and the butterfly’s wings would expand. 

But neither happened! 

The butterfly spent the rest of its life crawling around with a swollen body and shriveled wings. 

It never was able to fly… 

As the boy tried to figure out what had gone wrong his mother took him to talk to a scientist from a local college. He learned that the butterfly was SUPPOSED to struggle. In fact, the butterfly’s struggle to push its way through the tiny opening of the cocoon pushes the fluid out of its body and into its wings. Without the struggle, the butterfly would never, ever fly. The boy’s good intentions hurt the butterfly. 

Sometimes struggles are exactly what we need in our life. We would not be as strong as we could have been without them. We would never be able to "fly". If God allowed us to go through our life without any obstacles, it would cripple us. As you go through life, keep in mind that struggling is an important part of any growth experience. In fact, it is the struggle that causes you to develop your ability to "fly."

Zachary's Zombie Party

Zachary's new swing set

It took a while, but I finally got Zachary's swing set all assembled and ready for action in the backyard. Zachary's Nanna Jo and Papa Len ordered him the swing set for his birthday. Then it took a while for delivery. Then it rained every weekend in the summer. Then I was traveling. But September was a month when I didn't have to travel, so with the help of PaPa Greg, we got it all assembled in a grand total of 8 hours.

Zachary absolutely LOVES it. He was super excited to be swinging and loved going down the slide. I'm also looking forward to working with him on strength and mobility by helping him climb the ladder on the side (it has "rock wall" attachments to help with gripping).

Here's hoping for some great fall weather...

Zachary learns more sign language

It's difficult for Zachary to do the "traditional" baby or ASL sign language because of his spastic hands and arms. So we try to teach him certain signs to do "his own way". Renee taught him "please" and "juice" in just a few minutes and he picked up on it fast.

He's known how to do "more" for a while. Zach's sign for "more" is his fist moving up and down. Renee taught him "please" with his hand opened and put to his stomach. "Juice" is his hand opened and put towards his mouth. While he's learning the signs proper usage, we prompt him for them and he delivers, which is a great breakthrough in communication. It's been more than a week now and he's telling us what he wants with his signs without us prompting him.

Boulder Men's Christian Breakfast

A close friend of mine invited me to be a speaker at the Boulder Men's Christian Breakfast. It's a big group of gentleman who have been meeting together every Friday morning for the last 27 years. Each week, after food, fellowship and worship, they have a different speaker talk about their ministry and God's work in their life.

My friend, knowing our family's story, all we've been through and how much God has worked in our life suggested to the organizer to have me talk one week. And today, August 7th was it.

Even though I knew the content and knew it well, I was still a bit nervous and wanted to be as "prepared" as possible. I put down bullet point notes and excerpts from previous blog posts so I could craft how I would tell our story in a comprehensive, detailed and emotional manner that was honoring to God. It was important to be able to express the trials and tribulations to my faith, how I overcame and what I learned from God's will, from His chosen path for my life.

I picked up my friend and we went to the Baptist church where the group is held every week. The atmosphere was friendly, warm and welcoming so I immediately felt comfortable. I prayed for God's strength to work His message through me and to be able to speak with nerves. He came through.

I had a full half hour and took up every minute of it. It all came from the heart and I only referenced my notes to read quotes from other people on how Zachary has affected their lives - from YouTube comments, to Blog Comments, to Emails, and independent messages.

God worked through it all and from the feedback I received afterward, it inspired those attending.

Once I came to acceptance of Zachary's condition and the different path God had in store for us, I was determined to do what I could in outreach through YouTube, this Blog and other outlets. This public speaking engagement was my first, focused solely on our story and God's work in our life. Even though I had nerves, I hope for more opportunities to come. I praise God that He opened this first opportunity and for all the work He has done in our life.

Health care "reform" - NOT for me or my family

(I sent this out as an email to a Parent-to-Parent listserv I belong to. It's a connection of parents in Colorado with children with special needs. But it's implications are nationwide, so I post it publicly here with some edits for clarity on context.)

Here's a link to download the entire 1,000 page bill currently in the House. For all those who are supporting this bill - I'm curious if you have read all 1,000 pages. If so, I am wondering if anyone can explain to me why I would want to support anything like this for my family, especially for my son who has spastic quad CP.

Recently, I've seen dozen of emails and posts encouraging attendance at rallies, writing our senators/reps supporting the bill, etc. I love getting information about special needs care/therapies as well as references and referrals from that listserv for my son's care, but when emails are sent encouraging action for a health care "reform" bill, I get curious as to why I should support it and why those sending the emails are requesting support for this particular bill.

I haven't, so far, seen any specific reasons that would encourage me to be supportive of this. So I beg the question. How will my family's health care be better managed under government control? How will my son, affected by CP, be better off with government run health care than with private insurance?

Yes, I'm a dreaded conservative within the special needs community (gasp!). And I have never seen government run any government program efficiently, effectively, or with any semblance of common sense logic whatsoever. Why would I want government to run my personal/private health care? I don't even enjoy going to the DMV and the waiting times are immense (and a waste of time). I have to take a full day off of work just to renew my license. Imagine that kind of efficiency of government put on our health care. Think of the TSA, CIA, FEMA, Medicare/Medicaid (My son Zachary is STILL on the waiting list after 2 years for Medicaid and he has a top 10 qualifying condition, and with the changes to the HCBS waiver qualifications, even when he does come up on the waitlist, he will ultimately be denied.).... Get the picture? All of these have one thing in common - they are run by GOVERNMENT. I certainly don't like how any of those programs are run, so why would I want government to run my child's health care.

Take a look at this bill. There's a provision on Page 16 outlawing private health insurance! Outlawing it! From a website: "The provision would indeed outlaw individual private coverage. Under the Orwellian header of 'Protecting The Choice To Keep Current Coverage,' the 'Limitation on New Enrollment' section of the bill clearly states: 'Except as provided in this paragraph, the individual health insurance issuer offering such coverage does not enroll any individual in such coverage if the first effective date of coverage is on or after the first day' of the year the legislation becomes law.' So after this bill becomes law, nobody in the insurance business can offer anybody and you can't buy private medical insurance."

Uh, doesn't seem like much choice to me.

Look, I know there's problems with the system - but relying on the government is not the answer. Outlawing private insurance is not the answer. Supporting this bill is not the answer.

I'll be the first to admit that right now, I don't know what is the answer to fix the system we have, but I also know that it can be open for discussion - to be logical and smart and sensible about fixing something with purpose rather than rushing to change everything we have by creating an entirely new system. Why does this need to be passed in three weeks? Really, why rush it through? The Congress and the President did that for the stimulus bill - it had to be passed now - the vast majority of them did not even read what they were passing! And look where that went - billions of YOUR tax dollars sent off to where and for what? Nobody knows.

Now all of a sudden we want to do the same thing for our health care? Our health care!

Every Fourth of July, I read the entirety of the United States Constitution as well as the Declaration of Independence. Nowhere have I ever found anything declaring a right to health care. Freedom of speech is listed as a right, protection from unwarranted search and seizure is a right, freedom from cruel and unusual punishment is a right, a criminal has the right to a speedy and public trial, we also have the right to own firearms. But nowhere in my readings of these two great foundational documents of our nation have I seen a right to free health care. If I learned my history right, I believe our founding fathers have been ill before, that we've had doctors and hospitals around since 1776 and people have dealt with illness and health in this country for the past 230 years. Why does this need to be a "right" now?

On another note, we should all be demanding that the same health care "reform" Congress wants to shove down our throats should be the same health care that Congress is mandated to receive (as well as the President and first family). That is only fair, just and right in my opinion. If it's not good enough for them, it's not good enough for me or my family.

Why are we always accepting what they (Congress/President) deem "best for us" when they won't accept it themselves? Something is fishy here.

I will make the decision on what is best for myself and my family. I want the choice of private health insurance companies, even if they can be a pain to deal with sometimes, they still work best for me and my family overall. Yes, things are expensive and financially draining especially with the medical needs of a special needs child. But I will find ways to get him what he needs - work more, sell stuff, organize fundraisers, start a business plan - whatever it takes, but I will be in control of it, not the government.

On a separate note, for all those that abhor the continued use of the should-be-obsolete word, retard/retarded (and I, for one, do not like its usage as well, for the record), the beloved Democrats even included that word in the bill - guess they really do understand all of us. For proof and reference please refer to page 389 of this House bill. (Also, see this news article: NY Post "Retarded House Bill"). I know most will brush this off as a simple mistake much like Obama's slip of the tongue making fun of the disabled on Jay Leno. Yet it's usually the same people who brush these off that are still protesting low-brow movies that contain the word in their script dialogue.

In the end, why do we allow ourselves to be babied and pampered by the government? Why do we listen to their extravagant promises and believe in achieving utopia?

Be self-reliant. Work hard, live within your means, take care of your family. Build a strong network of family/friends/community. Lean on them, rather than the government.

It was Gerald Ford who said, and truthfully so, "A government big enough to give you everything you want, is strong enough to take everything you have."

Wake up. Giving more power to the government in controlling your personal health care is just another step down the slippery slope reality of losing our liberties and bringing us closer into a state of tyranny.

Our Florida Family Vacation

I had to travel to Florida to attend a fishing convention for work, so I made it into a longer family/working trip. We stayed with my cousin south of Tampa for a couple of days, then went to Orlando (for my work portion) and stayed at the Wyndam Resort, then headed back down to the Tampa area. Most of the trip was spent in the pool, but we did get to go to the beach one day.

Zachary had an absolute blast in the ocean. He loved the waves splashing up against him. You'll see his excitement in the pictures.

Since he already has a love for water, the pools down there were warm and heavenly for him. He's started to kick his feet while being supported in a stomach-down position and he even moves his arms in a swimming motion every now and then. It was hard to get him out of the pool when it was time to go inside - he did not want to say "bye-bye" to the water. We're still trying to teach him the concept of closing his mouth for dunking. He seems more interested in tasting the water than protecting his lungs at the moment.

Here's some pictures to tell the tale. I post them here because the last thing I want to do is establish another web account with Picaso or PhotoFish or whatever they are.

A Video Update

So I'm doing a quick cop-out. It's so hard to juggle all the digital spaces - blog, facebook, twitter, youtube, tangle, email, etc. I rotate my attention between them and I need to get a new posting up here. So I'm copping out by mentioning the new videos I have posted of Zachary on YouTube. There are three new ones, with one or more to come later. You can link from my YouTube bar on the below right side of the blog, or simply follow these links:

Zachary Talks
Zachary Shows Where Things Are
Zachary Discovers His Echo

Zachary's first rejection

I knew when we received Zachary's diagnosis we would be in for a lifetime of rejection. Being different, being disabled, being out of the ordinary always carries with it various levels of rejection, whether it be through friends, family, schools, sports, buildings or companies.

Zachary recently received his first rejection. Of course, the letter came to me, and Zachary, thank God, is still too young to have to explain anything about it.

A previous life insurance policy on myself lapsed and so I applied for a new line through the company I have other insurance products through - State Farm. I've been with my agent for six years and when I approached her about it, she came over and we went through the paperwork. One of the things I wasn't even aware of was having a child as a "rider" on the policy. Simple enough, the child is just included or attached on the parent's policy and if something happened to the child, they would be covered for $10,000. A relative small amount - enough for funeral costs and what not. A simple child rider...sure, I said, and we went further through the paperwork.

A couple of weeks later, I received this letter in the mail.



I read it a couple of times when I first received it, kind of dazed at the pettiness of it. I was willing to pay a pretty decent premium on my policy with Zachary as a rider, and they rejected him based on his cerebral palsy. It was a simple, lowly $10,000 of coverage. Their candor was admired though - they definitely did not dance around the subject or use another excuse. It was straight and honest.

What to do next? Do I go through and remove Zachary as a rider and continue with my policy?

One of the other decisions I made after receiving his diagnosis was the promise to not be friends with, associate with or do business with anyone who would reject Zachary based simply on his disability. So I let the rubber meet the road.

I called up my agent and explained clearly to her I would not be following through with the policy. She had not known about Zachary's rejection, so I explained it, read the letter on the phone, and simply stated my above family promise. As a logical person, I explained to her I did not take this personally and understood completely that it is just a very large corporation with a set of stated guidelines on who and who not to give insurance to - detailed facts be damned.

I further explained to our agent the fact that Zachary is healthy, has the potential to live a normal lifespan, is cognitively great (according to us, family and all therapists) and is at no risk of suddenly dying from his cerebral palsy. While I was disappointed by the result from State Farm's robotic analysis, I understood the big corporation approach. So I ended the call by stating as of now (though Obama's plans are to the contrary, but I digress...), it is still a free country with free market choices and I would be in the market looking for a new insurance company who would accept Zachary for coverage and would subsequently move all my insurance products over to that company.

She didn't know what to say, apologized, and that was the end.

Now begins the search for the new company.

Farmers was the first option and things seemed to be going well with them. Farmers honestly stated they would reject Zachary, too, on a life insurance rider, but they have a policy which allows for an internal broker to find a company that will say "yes" if Farmers says "no". They were able to find an outside company, Protective Life, which has an A-rating and will accept any child as a rider, no questions asked, up to $20,000. Protective Life would also allow the child, once 25 years of age, to take on the policy individually and multiply the coverage up to five times. However, Farmers was unable to effectively match or beat the rates of my other policies, so the search continues. Though I will keep Protective Life in mind.

While talking with the Farmers broker, I probed the "extreme future" question, to gage what life will be like for Zachary. I told her I'm a conservative, I'm going to raise him to be independent and take care of himself and I believe he will be cognitively fine. Yes, he will have some physical disabilities, but I have no doubt he can grow up, get married and have a family of his own and be the provider for the family. Once having the family of his own, would he be able to get life insurance for himself? Her answer - NO.

So this is just a peak into the further struggles Zachary will face in the real world when he goes off as an adult. He won't even be able to get a life insurance policy to cover his family. The rejection continues.

Rather than seethe at the way the cards are stacked against him and us, I'll be taking a proactive approach. This has spurred me to be much better with my finances; to be goal-oriented on paying off all our debt as quickly as possible; to work hard to establish a bright future for him; to assist him in overcoming the rejections of the world and to find solutions through the problems.

This is just the first of many rejections to come. Luckily, this one did not have much emotional value attached to it. Oh do I dread the day(s) when the more emotional rejections will come - the name calling, the dismissal of value, the loneliness, the ignorant, the plain and downright mean and evil.

No, this is just the first. And while it's only silly insurance, it still hurts for the reminder of things to come.

"The Arc Is" - Summit of Hope 2009 Video for The Arc of Jefferson County

This is a video I did for the Arc of Jefferson County. They are a local chapter of a nationwide organization (a lot of support dollars come from Arc Thrift Store) serving children and adults with cognitive, intellectual and developmental disabilities and their families by providing individual advocacy and training. Every year, the Jefferson County chapter (the county I live in) holds a banquet fundraiser called the Summit of Hope.

They always have a video created beforehand to play during the middle of the banquet. It features different stories of families, what they go through, and how the Arc has helped them. This year, I volunteered my producing, directing and editing skills towards the project. My friend Dirk, did the camera work. This is the finished product. Hope you enjoy.

http://www.youtube.com/watch?v=2YvCmj7VUX4

*I tried embedding it, but the video format is larger than this blog frame so 1/3 is cut off, so visit the YouTube page instead.*

Fighting the Abortionist Culture

This article from the Washington Times was posted in a parent-to-parent listserv I belong to. It is great to know there are people forming groups/ministries to counter the "throw away baby" disease permeating our current culture.

It is good to know there are still people with morals, values and a deep love for God out there.

Zachary's first Adam's Camp adventure - Early Start Program

Colorado has an intensive therapy camp organization called Adam's Camp. They have a different age group camps - the older kids get to go up to the mountains for a week (parents too) for a real camp adventure. The younger kids, Zach's age, go to a 5-day, 3-hour a day therapy session at a Denver-metro location called "Early Start".

A description about the organization from their website:

Adam’s Camp is a Colorado-based nonprofit organization created to provide a variety of intensive, personalized and integrated therapeutic programs for children with special needs and their families as well as recreational programs for youth and young adults with moderate developmental disabilities.

Based in Denver, Colorado, Adam’s Camp offers a variety of programs for kids with special needs from infants through young adults. The Intensive Therapy Programs and Transition Program provide team based, interdisciplinary treatment. Small groups of pediatric therapists work one-on-one with 5 children over 5 consecutive days. They focus on each child’s needs and assets, providing coordinated, outcome based treatment.

Families are a big part of all therapy programs. Adam’s Camp offers families the support they need to understand, treat, advocate for and enjoy their child and his siblings.

Once we heard about this program from a resource fair put on by the Arc of Jefferson County, we signed Zachary up immediately. For a week in March, Zachary went through this intensive therapy camp going through a variety of different therapies - Physical, Occupational, Music, Speech and Group Playtime.

It was exciting to see Zachary thrive in this new situation. We were a bit concerned before because he didn't seem too interested in being social with kids - just adults. But he really "connected" as two-year-olds can with the kids at the camp. We got rave reviews from all the different therapists about Zach's personality, ability and intelligence. It put me to tears to hear all the therapists tell us how incredibly smart he is, how determined and how much tenacity he has to overcome his obstacles.

These are things we as parents knew in our heart, but it's so amazing to hear them confirmed from credible third party professionals.

The camp was terrific and I would definitely recommend it to anyone in the Colorado area. There were families from the CO-NM border and from Iowa who came for this particular camp.

At the end of the camp, the therapists present us with a book on Zachary. It has pictures and reviews of Zachary on all sorts of levels.

I scanned in all the pages and posted them here - yes, proud parent bragging away. But in situations like ours, it's joyous to have something to brag about every now and then.

Four-Alarm Surprise

It takes me way too long to sit down and write, I know. Anyway, back in late February, we were given a HUGE surprise that completely blew us away. The chiropractic office where we get Zach's HBOT treatments told us they needed to contact Renee's parents to clue them in on details for a surprise for us.

It was scheduled for Feb. 21. So, when that day come around, we were led out to east Denver where the Fire Department has their training facility. We went up to a classroom where other families with special needs kids were gathered. There were two big firetruck wagons in the front of the classroom. I started thinking this was a special class to teach kids about fire safety in unique circumstances (with disabled kids) and Zach would get a chance to ride around in the wagon.

The organizer, Tony, gathered everyone together and started talking. Tony explained how a year ago he was talking with a firefighter co-worker of his who had a son with CP. Tony asked if there was anything the fire department could do to help out; how was he doing; how was the family, etc. The co-worker responded they were all doing well and handling the situation, but the thing that really killed him was his son would never be able to ride a firetruck. Tony responded, "we'll change that."

So Tony and a few other firefighters custom built their co-worker's son a firetruck wagon. The child loved it so much, they decided to do this every year for a special kid. Tony takes his son to the same chiropractor we do for HBOT. He had seen Zachary several times and secretly chose Zachary to be the next one to build a wagon for.

And here they were presenting it to us! Renee and I had tears in our eyes, it was such a tremendous and wonderful surprise. Such outpouring of care and love from relative strangers! The wagon is absolutely amazing! It has real working lights, a bell, a ladder on the side. The front grill has his name cut out of the metal, and his name is emblazoned on the dashboard inside. The wagon is also upholstered inside, has cup holders and a pull switch to turn on the lights.

Zach's going to be crusin in style!

After the presentation, they had a whole list of activities planned for the training facility - drive a video-game firetruck, go into a smoky training house to find a baby doll, and get to go up 100 feet in the air in the firetruck bucket.

Massaging and Stretching Zachary

A YouTube viewer had asked us to post a video about massaging and stretching Zachary. Renee takes care of this usually after his bath time and the entire session can last for 20-30 minutes. It's a long process. I video'ed her and prompted her to discuss what she was doing. She's a massage therapist by trade, and a darn good one too, so Zachary is blessed to have such a skilled mommy.



For any other parents with children with CP, especially with hypertonic muscles, we hope this can help give you some tips or guidance in stretching and massaging your children. This is very therapeutic and will help their muscles, movement and range of motion. Also, if there are any questions, I'm sure Renee would be more than happy to explain anything in more detail by email response or comment response.

Zachary on Film

My brother in law, Gary, is in Film School. He had to create a 16mm film project for his application into the Bachelors of Fine Arts program. He chose Zachary as his subject and this is the edited film of Zachary and his walker.



I'm copying Gary's "Disclaimer" that he put on his YouTube channel. Although he says it's diminished, we all think it looks great and especially love the part towards the end where Zachary smiles.

*Disclaimer* The film to video transfer has severely diminished the quality of the video. The colors are desaturated and the lighting seems to have been brought down. This is not my fault. Seriously, you should see the film. Anyone got a 16mm projector? *Disclaimer*

The film was shot with a Bolex 16mm camera on Kodak 500T film stock. This is more experimental than narrative, since that is what the film program at UCB focuses on.

Pictures in February

Momma and Zach.

Watch out! Zachary's driving.

Sitting up and playing with cars.

Cool hat Zach.

You so funny.

Can you love them more?

Since doing the mild Hyperbaric Chamber Treatments, Zachary has really increased in verbal babbling and has been able to pronounce a few words like dada, gimpa, papa, done. We decided a long time ago it was definitely time to get him into yet another therapy - speech. All our outpatient therapies are with the same location, so we decided to get in their line for a full speech-therapy-evaluation.

This location's speech therapy department is so flooded there's a long waitlist just to get therapy services, let alone the initial evaluation. So we were surprised and excited when a cancellation came up and we were next in line.

We went into the appointment with a great positive attitude and were really happy because we knew if we just laid him on the floor, he would begin babbling for her and she would be impressed with his verbal skills. She began the evaluation and conducted her "tests". She would ask him to point at the right picture in a book, shake little objects out of a bottle and other weird stuff. Zach even played on the floor and babbled his little head off.

Then at the end of the evaluation, she decides to tell us her prognosis for Zach. "He's not going to be able to talk for the majority of his communication and will need augmentative speech devices to communicate."

Not going to talk?

Augmentative speech devices?

Did you hear him babbling? You're saying this to a parent on their FIRST speech evaluation. Like I'm supposed to know what the heck augmentative speech device means. All I can think of is Stephen Hawking's voice computer. And how in the world can you just say he's not going to talk - he's NOT EVEN TWO YEARS OLD for crying out loud!

However, at the time I was more flabbergasted and stunned than anything. I asked if she was looking too much at his diagnosis and not at him specifically. She replied that the diagnosis has much to do with it, but she wasn't very helpful or seemed very positive about him talking. She approved him to get therapy services and put us on a three-month waiting list. Yea.

Renee and I sank into depression by this hard blow that came out of nowhere. Renee held it together more than I that day. I was a wreck - popped a xanax and was checked-out. It was too much for me to handle at the time. All the positive build-up we've had over the last several months, all the progression and development, all the great achievements, and then BOOM - the air's knocked out of your chest cavity and the clouds of doom & gloom swirl overhead.

Given a day or so to sort it all out after the evaluation, we both decided the prognosis was absolutely ludicrous. We were not going to accept it and just like anything else with Zachary we are going to be extremely proactive and he will speak. I'm in the process of finalizing a decision on a freelance speech therapist to start working with him from home right away.

All that to say, I think I found myself loving Zachary more. It was just a feeling at first, but I started thinking there were changes in the way I spoke to him and the way I handled him. It seemed as if I was “loving him more” – being sweeter, spending more time, concentrating on his needs or wants more. I knew the prognosis was not going to be correct and I knew Zachary has the capabilities and determination to exceed anyone’s expectations. And I especially knew no one loved our little bugger more than Renee and I.

As time goes by, you get back into the normal routines and grooves of life and sometimes these “special” heightened feelings go back to normal levels. But for a time, I felt like I did love him more than I already did.

So, back to the title of this post… Can you love them more?

More to come...

I just got back from a whirlwind of business dealings for my job and have a ton of work to do. I do have ideas for some great posts especially with what's happened to us recently.

We were told by a speech evaluation person that Zach wouldn't be able to talk for his major form of communication.

We're looking into stem cell therapy and have a call with one institute in Australia today.

I'm thinking about a series of products to market based on Zachary's life and our story.

Zach's PT and OT costs from Children's are getting higher and higher each month since our insurance will not "cut off" at a out-of-pocket max when it comes to therapies.

And we've come to the realization that within the next year or two, we have to find a ranch-style house as the one we're in is NOT practical for Zach either in a walker or wheelchair.

So in time, when writing is more pleasure than business, I will elaborate on these points.

A father's Christmas present

Ever since we started the Hyperbaric Chamber Treatments, Zach has exploded in his verbal. Mostly its just babbling and experimenting with sounds - gobbildy gook if you will. But every once in a while, Zach will get out a purposeful word.

On one momentous occasion (un-videotaped of course), I was giving Zach his nighttime milk and with about a quarter left to go, he pushed back and said, "Done." I was shocked! Had he really said it? I decided to investigate and tried to give him more and he promptly tightened his lips and arched back with a disgusted look. He was DONE. And he said, "Done"!!! Praise God, it was amazing!

Earlier in the month, I was on a business trip and Renee used her cell phone video camera to capture a moment meant to melt a faraway father's heart. It was an early Christmas gift - one of the BEST ones.

Here it is.


(We will also be posting-as soon as I find the DV tape-a good clip of Zach babbling away. Renee and I truly believe this is a direct result of the Hyperbaric Chamber, for what it's worth).

MERRY CHRISTMAS!

From our family to yours, we wish you all a very Merry and Blessed Christmas!

As we open our presents, drink delicious cups of holiday cheer, eat Christmas dinner, laugh (shaking our "bellies of jelly") and play with family and friends, let us all remember where our focus should be - on those things which are eternal.

We are blessed with family, friends and even strangers. And we're even more blessed to be counted as part of the family of God!

Matthew 1:23
Behold, a virgin shall be with child, and shall bring forth a son, and they shall call his name Emmanuel, which being interpreted is, God with us.

Luke 2:8-14
And there were in the same country shepherds abiding in the field, keeping watch over their flock by night.

And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid.

And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.

For unto you is born this day in the city of David a Saviour, which is Christ the Lord.

And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.

And suddenly there was with the angel a multitude of the heavenly host praising God, and saying,

Glory to God in the highest, and on earth peace, good will toward men.