Celebrate St. Patricks day by helping MDA!

Tyler's disease is included as one of the family of diseases that MDA provides services, resources, funding for research and camps. Help support MDA in finding a cure for FRDA by buying a shamrock! You can actually text on your cell phone to donate $5 and buy a shamrock and get a wallpaper for your phone. The $5 is billed to your phone bill. For more information click here

Or just take a leap of Irish love and text "Irish" to 20222 to donate $5 now!

Adam's Camp

We really want to attend Adam's Camp here in Colorado this summer. This camp has gotten amazing reviews from other parents I connect with that have special needs kids. The program for Tyler would include intensive one-on-one therapy with a variety of therapists during the day. We get to go with him as a family! We will stay in a cabin and while he is receiving therapy we will get to do some fun respite things and therapy of our own. I think for the boys the sibling connection and support they will get will be so valuable. And I would love to connect with other parents as well. Especially right now our family needs as many supportive, bonding experiences as possible and we all need our own flavor of connection and support from others who understand what we are going through.

The cost of the camp will be approximately $3500. Unfortunately, our insurance will not cover any of the expense. The cost includes Tyler's program and all therapy, as well as our cabin lodging. We have applied for several grants and scholarships, but they will only cover a portion of the cost. We also have some fundraising opportunities coming up soon and I will share the details and dates as soon as they are available. If you'd like to help send us to camp, let me know or click on the donate button to the right. Also, if you have an idea for fundraising, please let me know! I'm willing and able to do a lot of the planning and leg work to have successful fundraisers to make this happen!

Keyboard Delivered Today :)

We got a great surprise today! Ms. Lindsay, Tyler's SN teacher came by after school to deliver a keyboard!!! Tyler is ecstatic about it. He has had his own little keyboard for quite awhile that he plays every day but it was going through batteries like crazy and he found out his brother had a full sized keyboard that did lots of cool things his didn't and has been driving Dillon crazy wanting to play it. She delivered lots of happiness for him today by giving him his very own big keyboard with tons of sounds and songs to play around with. He will be entertained for hours with this and hopefully will make this sick and snowy weekend a little easier for us all to bear. It even has headphones! :D Thanks so much to Ms. Lindsay!

Help #5 - For Mom :)

I just got an email about this luncheon and would love to go! There are very few respite opportunities for me with so many needs with four boys and especially Tyler's needs and appointments etc... I will update this post with other things you could do to help mom out :)

http://cpco.org/motherstea.html

Help #4 - Full Size Keyboard - DONE!

Or at least a bigger one :) Tyler has a small one that he plays for several hours a day and loves it but now he has his eye set on big brother's full size keyboard. Dillon is patient to let him play it for a little bit every day, but not nearly enough for Tyler (and probably too much for Dillon!)

Tyler loves music and it is one of the best things to keep him calm and relaxed and playing on a keyboard is one of his FAVORITE activities.

So if you have a fun closer to full sized keyboard around the house that the kids aren't playing, or you don't want anymore, Tyler would make GREAT use of it! We'd especially love to find one that has a power cord... AA batteries are killing us with how fast he runs thru them with the other keyboard. Ok he chewed a few up! And we got some now that we can recharge, but a power cord would be so much more efficient.

TIA

Help #3 - Some Therapy Items We Need

Ok, I'm working on building up our therapy and exercise program at home which is going to become vitally important for Tyler now. After OT today I realized there are a lot of missing pieces at home that we need to start collecting somehow. So if you know of anyone that has used items on the list that would donate or sell cheap, or if you would like to donate specifically for an item, let me know! I'll add to this as things come up with our OT and PT :) TIA

1. Nintendo Wii w/Fitness Board (this is supposed to be a huge help for balance training and strength training for kids with FRDA!)
   
2. Weighted Vest & Sensory Clothing. Links:
   Weighted "Miracle Belt"
   Hugg ME Tank Top
   Weighted Hoodie
   Weighted Vest
   Deep Pressure Sensory Vest
   
3. Therapy Balls (especially a big one like 42"!) Click here for more info!
4. Or Ball Chair (a therapy ball with stability of a chair) Click here for more info!
   
5. Swing set (regular outdoor set)
6. Or adaptive stand/equipment for indoor therapy swing and swings, he loves the blue body sling, tire swing and a few others at OT. Really anything that he can swing and spin in! Links:
   Portable Stand
   Swivel Swing Board
   Airwalker Swing (Tyler's favorite!)
   Cuddle Swing
   Weplay Platform Swing
   
7. Balance board Click here for more info!
   
8. Mini-trampoline with handle Click here for more info!
   
9. Spinning activities Click here for more info!
10. Special needs step stool Click here for more info!
11. Special rocker chair Click here for more info!
12. PUZZLES! He loves them and they are great for therapy, sensory input, etc. Here are a bunch that are on clearance: click here
    
13. Hippity Hop ball
14. Wrist or Ankle Weights (the smallest/lowest weight available) and other small weights
    
15. Wagon or Wheelbarrow for strength exercises
16. Scooterboard Click here for more info!
    
17. Adaptive pedals for bike (the kind that sandwich and screw onto pedals)
18. Small bike & Helmet
19. Chewy Toys (we go through these amazingly fast as he is in a chewing phase right now, but they keep him from chewing power cords and batteries which are his favorites and scare mom to death!) Click here for more info!
    
20. Fine Motor/Sensory toys and games Click here for more info!
21. A new nebulizer (ours is about worn out!) Click here for more info!
    
22. Seamless, long socks to wear under his AFOs
23. Craft/Scrapbooking items like paper punches and rubber stamps *The ones we need are the ones with large easy to grip handles almost like a cabinet drawer pull! He has to be able to manipulate with his reduced fine motor skills :)
    
24. Play-doh, theraputty, small items like marbles/beads/buttons to hide and find in the putty
25. Therapy mat for daily exercises and stretching Click here for more info!
26. Training book on "Core Concepts" for OT and strength training at home Click here for more info!
    
27. I'll add more as I think of them!

Help #2 - Housing!

Like I just mentioned in my previous post, we will soon have to find new handicap accessible housing that will meet Tyler's needs as well as the rest of the family. We would love to apply for Extreme Home Makeover, but we don't own a house or land so can't even apply. Everyone who knows our story is sure that we are deserving but figuring out how to even purchase something is a huge, almost insurmountable, obstacle before we could even apply. I personally don't have the means to get financing at this point, especially with my income being so dependent on child support and Tyler's benefits so that I can be home taking care of him instead of out working and leaving his complex care to someone I don't know.

So, if you know of a resource that might be able to help us with the first step, just getting some land or a house here in the Thornton, CO area (or even Denver area) so that we can stay close to his medical and school team, please let me know or contact them with our story. I'm open and willing to any ideas or suggestions. I believe that there are angels out there with the resources Tyler needs to have all the care and compassion he deserves while he is still with us and able to enjoy life. Sometimes it just takes the right connection, or series of connections, to put miracle workers in touch with the little ones that need them.

Thanks from the heart,
Tami

Help for Tyler

You'll notice a donation button to the right of the blog posts. This is an easy and fast way for you to help with Tyler's needs! This account has been set-up to use for extras that insurance and other sources don't pay for such as extra therapies, transportation, equipment for home therapy and exercise, camps and experiences.

In the somewhat longer term, this is also a savings place towards a handicap accessible house for Tyler in the next few years. The house we have now is not very accessible or manageable for him and there is no option of making it so, since we rent. I estimate that within the next 2 years at a minimum we will have to find alternate housing that will meet his needs and is large enough for all the boys.

So, if all you can do is donate a little, every little bit helps!

Thanks as always from the heart,
Tami

Help #1- Wellness CD - DONE!

We have had other music/story tracks from this company and Tyler loves them! They are so calming and relaxing and they teach some really healthy techniques like deep breathing and relaxation. I just saw this new release and want to get it for him soon to listen to while we do our new stretching and exercise routines (all pretty calming stuff) that we will be doing now a couple of times a day. Especially for night times :)

Here is the link to the CD and there is a digital download available as well. Just something small that someone might be able to provide to make Tyler's stretching time and quiet time a little more uplifting. :)

Thanks as always from the heart...

Ways You Can Help Tyler & Our Family

I've been asked, a lot recently, what we need help with in light of Tyler's new diagnosis and the increased demands on our finances, time and energy. So, to make it a little easier for me to remember what it is we do need help with, I've started this blog. This is a place that anyone is welcome to visit and find out ways that they can help Tyler and our family as we transition into living with his disease. I will make each need a separate blog post explaining the how, what, when and where we need help and as people fulfill needs I will update those posts.

I want everyone to know how much it means to us to have the support, love and prayers of those around us that know Tyler and even those that dont! It makes every day a little brighter, a little easier to bear the load, knowing that so many people are out there praying, sending good thoughts and a little bit of love our way!

Introduction to Tyler and Friedrich's Ataxia

If you haven't already, please visit Tyler's update page at http://www.caringbridge.org/visit/tylercarpenter to find out more about Tyler, his diagnosis, his family etc!

Tyler has been diagnosed with several severe complex medical diseases. His current list of diagnoses are: Friedrich's Ataxia, Cardiomyopathy (HCM & DCM), Autism, ADHD, SPD and a few other minor things :)

For more information on his most serious diagnosis, Friedrich's Ataxia, click here. In short:

What is Friedreich's Ataxia?

Description
Friedreich's ataxia (FRDA) is a rare, genetic, neurodegenerative, multi-system, life-shortening disorder. About one in 50,000 people in the United States have Friedreich's ataxia. Onset of
symptoms is usually between the ages of 5 and 15, sometimes even earlier and sometimes significantly later. The course of the disorder is progressive. Most young people diagnosed with FRDA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s.

Symptoms

• muscle weakness and loss of coordination (ataxia) in the arms and legs
• vision impairment, hearing loss, and slurred speech
• aggressive scoliosis (curvature of the spine)
• diabetes mellitus or carbohydrate intolerance
• a serious heart condition (enlarged heart — hypertrophic cardiomyopathy)

These symptoms reflect the death of cells in certain parts of the nervous system. The mental capabilities of people coping with Friedreich's ataxia, however, remain completely intact. For most, progressive loss of muscle strength and control leads to motor incapacitation and the full-time use of a wheelchair by the late teens or early twenties. Many require surgery for their scoliosis. There are currently no treatments or cures.