This Blog is intended to educate as many as possible. Our story is unique as is each story of a special needs child.

Thank you!


Tuesday, July 22, 2014

4 yrs ago we had hope...today we have "New legs that work"

Just 4 yrs ago,we took a chance to give our child the chance to walk. We looked at a variety of treatments, but due to host of obstacles  including, risks, finances , and extensive time in the hospital, we opted against what we were offered. On top of it all, we were still told, that our son would likely never walk or in a best case scenario, need an assisted device. We were frustrated to say the least with conventional medicine/treatments so we went another route and ventured to Germany for adult stem cells.. While loaded with lots of controversy and frowned upon by the US dr's...I am so glad we did as today my son has his wish; He has new legs that work.
 For the most part Ethan uses crutches out in public but at home and when he's in a comfortable atmosphere (school, with friends/family), he throws the "sticks" to the side and runs on his own.

All in all despite the bad media and skepticism of it being "snake oil" or "wishful and desperate thinking", I would do it again in a heartbeat. Sadly, today the clinic in Germany is shut down due to investigations and controversies but I am hopeful that with the progressive testing and trials, this amazing treatment will be available in the US sometime in the near future. Until then, we will continue running, walking and challenging this disability known as Cerebral Palsy.

This is today...

Saturday, June 1, 2013

One more week...

Well, the end is in sight...

One more week and Ethan will have his legs back. While cumbersome and at times causing me to deep breathe and learn yet another lesson in patience, the serial casting has been beneficial and the range of motion in Ethan's hamstrings is remarkably improved. 

We've been teasing him that his "Twins" casts have been certainly bringing the team good luck (his latest pair of casts are red/blue...aka Twins casts) and that we might have to consider keeping them on until the end of the season...somehow Ethan doesn't seem to be very receptive to that idea. Nevertheless next week Monday, they come off...and we can proceed with "next steps"... Yeahhhh!

School was out for summer vacation on May 23rd and all three of the kids were more than ready for a break and for some warm, sunny weather.  We are all truly excited to see what his summer has in store for everyone.

That's about it for now...

Until later, 


Sunday, April 28, 2013

Long time...no updates

It's been awhile since I've updated things so I thought I take a few minutes to share where things are... In February we decided to have some serious fun and took our first official family vacation. As we had promised the kids, we opted for Disney but which one was the ultimate question...well, Ethan made the final decision for us as he had his heart set on going to CarsLand...so off we were bound to California's DisneyLand. All I can say is Amazing! We all had so much fun enjoying a break from our hectic life... 5 days of fun...not once did we think about surgeries, drs, therapy or any disabilities. Disney treated us like absolute movie stars from the time we checked into the hotel til the time we left... The entire family had fun.

A few days after we got back however we were back to Mnpls for a follow up drs appt...and we again found out that more surgery was in order.

Our little man had grown so much over the last few months that we could not keep up with stretching and as a result, his little hamstrings were getting tight again. One good note that we asked the surgeon to confirm at least 3x was that this tightness was NOT an issue of tone but instead rapid growth...wooohhhoo! So since It was time to remove the hardware from last year's surgery, the surgeon agreed to do some deep tissue Botox and an aggressive series of serial casting for a 6 week period. Ugh...this requires casts up to almost his waist and trips to mnpls every 2 weeks for cast changes. I wasn't quite ready for this all over again, mentally or physically but both me and my husband knew that we had to proceed to avoid future orthopedic issues.

Well, fast forward to April... Surgery occurred last week Thrs and all went fairly well. We have a large bag of hardware and a champ in 2 long legged casts...it's been more of a struggle for mom in adapting to the change of routine (bathroom, sleeping, transportation) but we'll get through it...after all its only temporary...right?

That's where we are right now in this crazy world we know as daily life...we are all very happy to have winter almost over with and we are more than ready for some sunshine and warm temps!

I'll be more diligent in the future about giving updates but overall Ethan is doing awesome and for those of you wondering if we have ANY Regrets about our option to do stem cells? We can wholeheartedly say no! We would do it again if we were able...We just hope and pray that this medical marvel is soon available In the US as despite the controversial shows and reports, Stem Cells do work!

That is my closing comments for today...as always keep the prayers and thoughts coming, there isn't a day that we don't need them!

Until later,


Saturday, January 5, 2013

A pair of crutches can be cool!

A while back Ethan got his first pair of "really cool" crutches...they were the Avengers! He still loves them but has been wanting another pair for awhile. Today was that day when his new Tim Tebow crutches came in the mail from BFunky Mobility... He was thrilled and totally in awe as now he can really hang out with a true SuperStar... Our next mission, is to get them signed...

For those of you that know someone who uses a cane or crutches, check BFunky Mobility out...whatever you dream...they can do! One very awesome company and 2 EXTREMELY awesome ladies...thank you Darcy and Sally!

Stop, smile and survive.

Ethan continues to grow, mature and reach milestones we never thought we'd see. Yes, we have had some "bumps" in the road, whether its been growth spurts causing extra tightness or whether its been some developing behaviors, the last few months have been far from easy or perfect. Never less, we have survived and we've gone on, despite concerning questions of "if", "how" and "why"... We have survived.
As a mom, dealing with a special needs child has been hard. It's not just a bonus of having a special handicap parking pass...it's the therapy appts, it's the multiple dr's appts, it's having your home taken up by special equipment, it's wondering where and how each medical bill will be paid for and at times it's dealing with the stares and whispers of others. I always said "there is no way I could have a special needs kid!" And here I am, not mothering one of them but 2. Our oldest son has ADHD/ODD as well, which can be an even more daunting challenge some days.

I have sat back many a time wondering ..."Why me? Why 2? What did I do?"... For those of you that know me, I have been known to have no patience before having children. I have pondered those questions for 8 years now, and while I still don't have clear cut answers, I do know more than I used to...I've learned to be a better mom and I've learned to find the silver lining in life (no matter how dark the cloud seems to be)...I have met so many other incredible mothers and fathers who bring out the best in me, I've also discovered the best friend a girl could ask for who listens, laughs and scary enough--UNDERSTANDS me. Finally, I have been given so many opportunities to give back to others which is the most rewarding thing one can do.

In short, I've grown and developed into so much more than what I could have ever dreamed and all because of my 2 special needs kids...I am truly blessed.