Tonya
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Tonya's Friends

  • Billie Swarztrauber
  • Jeni Ward
  • Sandy Birr
  • Wyatt's Mommy, Melissa
  • Anne Hancock
  • ewh
  • Kathy
  • Gail D. McVicker
  • Michelle
  • Kelvinsmom - Michelle
  • Mindy
  • Joanne Haswell
  • Linda Currier

Tonya's Discussions

Camp for younger boys

Started this discussion. Last reply by Tonya Mar 28, 2011. 2 Replies

I am organizing a 3 day camp for boys age 6 to 10 in southern NH.  The focus is for the boys to be in a group of kids just like them, where they are not the slowest or where they don't have to sit…Continue

Camp for younger boys

Started Mar 24, 2011 0 Replies

Hi, I am organizing a 3 day camp for boys age 6 to 10 in southern NH.  The focus is for the boys to be in a group of kids just like them, where they are not the slowest or where they don't have to…Continue

Adaptive PE

Started this discussion. Last reply by Susan Rathfelder Jun 8, 2010. 1 Reply

Can anyone tell me how adaptive PE works?  Can the regular PE teacher do it?  Does it happen in a separate place from the regular class? Thanks! TonyaContinue

Kindergarten aide

Started this discussion. Last reply by Brenda May 8, 2012. 14 Replies

Gus is starting kindergarten next year and we just had his IEP meeting.  His preschool teachers and his pediatrician recommended that he have an aide for recess, PE, and any fieldtrips. The district…Continue

 

Tonya's Page

Profile Information

About me:
I am a 39 year old mother, wife, English teacher and photographer.
About my family:
Our son, Gus was recently diagnosed with DMD and he's 4.5 years old. We also have an 8 year old, Isabel, and a 6 year old, Abe.

We're trying to navigate this new world we've been thrust into, determined to do everything we can to help our son.
Name(s) of child(ren)/individual(s) with Duchenne:
Gus
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Francestown, NH

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Comment Wall (15 comments)

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At 8:06pm on May 3, 2010, Billie Swarztrauber said…
Thanks Toya. I do feel overwhelmed! How old is your son?
At 8:10pm on March 26, 2010, Jeni Ward said…
I know how you feel. I was so nervous. After we ordered it, it took us a while to actually start it. Colin has always been at the top of the charts (he was almost 9 lbs. at birth, 2 weeks early), so I was very concerned about the weight gain. We have changed our diet- he already ate pretty healthy, but we are basically just limiting juice and eliminating processed foods as much as possible, watching his sodium. He just had an appointment last week, and his BMI had actually decreased since last time. He is able to do more, so I think he's burning more calories. So nothing yet, and it has been about 31/2 months. He is pretty mild-mannered, and we did notice a slight change in his emotions. A little more agressive and cries a bit more. But that is actually going back to normal now. He is hungrier now, so we just offer fruits and veggies when he says he's hungry. Good luck. I think you will be happy you made the decision to start it.
Let's keep in touch- our sons are the same age, and we have daughters the same age, too. I'm a teacher, too! Let me know how it goes.
At 2:25am on March 15, 2010, Jeni Ward said…
Tonya,
I have a four-year old son with DMD as well. Your kids are beautiful!
Colin was diagnosed this past summer. We started him on Vitamin D, CoQ10, and Omega-3 right away. I think the Vitamin D or something started helping right away. That along with daily stretching, and the night splints to keep his heel chords stretched. Is Gus doing those? They really helped Colin. Looking at your pics, your little Gus reminds me a lot of Colin.
We did finally start Colin on deflazacort about 3 months ago. The difference in his strength, stamina, and energy is huge. I know it is scary, but Colin can do so much more, and he is so much more confident. We have family in Charlestown, NH, so we do come east from Washington State every few years. Hang in there. We are pretty new to all this, too. It's hard, but it helps to know you're not alone.
Jeni
At 1:21pm on January 18, 2010, Wyatt's Mommy, Melissa said…
Tonya, I know I can't believe it either. Sometimes I "forget". It just doesn't seem possible that I had 3 healthy boys before Wyatt. (Which I thank God for everyday) Initially I was sure that it was a random event and I couldn't be a carrier. Unfortunately, it turns out that not only I am a carrier, but so is my Mom and 15 year old daughter.

Wyatt takes 3000IU of Vitamin D, 50mg of CoQ10, and 15ml daily of an antioxident drink, Also he takes like every other day a liquid baby laxative (he has horrible constipation).

We are slowly starting him on other stuff too, he's just so small for some of the stuff (protandium, Haelen 951, etc.) So he will start those things sometime this year.

I hope we can talk soon, take care.

Melissa
At 12:33am on January 16, 2010, Wyatt's Mommy, Melissa said…
Hi Tonya, Your kids are just gorgous. My nanme is Melissa and my son Wyatt was diagnosed on Jan 9, 2009. He's 22 months old and our 5th child. We had never even heard of DMD prior to Wyatt's diagnosis. I hope you find comfort and support here, I did. My cyber friends got me through alot of dark times. God Bless your family.
At 4:55pm on December 5, 2009, Kelvinsmom - Michelle said…
I'd be glad to let you know everything that we do. I'm so sorry to hear about your son. We are all here for support. This ist he greatest place to be for help and support. I've got a very, very busy 3 weeks ahead, but let me know anytime. It may be after that until I can respond. Kelvin has improved a lot over the last few years, through everything we do, steroids, supplements, braces, etc. He is doing great for 7 years old. Thanks, Michelle
At 6:08pm on November 25, 2009, Kathy said…
By the way, beautiful pictures!
At 6:08pm on November 25, 2009, Kathy said…
Nonsense Gene, there is a new treatment that holds promise. There is alot of good things on the horizon. I do have faith in that.
At 6:06pm on November 25, 2009, Kathy said…
Oh My God. I hope you are feeling better, physically anyway. That's horrible. Keelan's diagnosis came right on the heels of my Mothes losing her battle with lung cancer. Someone said that it's a 'compliment from God' when everything happens at once like that b/c He thinks you are strong enough to handle it. At some point last year I figure God thought I was awesome! :)

I am not a carrier. Keelan skips exon 42-46. If Gus has what's called the Stop Codon or
At 2:59pm on November 25, 2009, Kathy said…
Yes to MGH (love it!) and we still take him to Children's too, but less often. Not sure how long insurance will cover both. Look into Jett Foundation as well. Christine McSherry pulled together the clinic at MGH with Dr. Brian. They are both wonderful sources of help and information. How long ago did you guys get Gus's diagnosis? Keelan was 15 mos. when we found out by accident. He was tested for Celiac by a gastroentonologist who noticed he's stopped growing (for awhile). He found his high CK by accident. We were referred to Childrens and the rest is history.
 
 
 

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