Finding a bridge over troubled waters

Well, it looks like warm(er)weather has finally decided to come to our area...the kids are having a blast being outside and Ethan is becoming quite fast on his bike...occassionally I even find myself out of breath trying to keep up with him.
Outside of that we all are doing well and keeping in stride. We visited with the orthopedic surgeon yesterday and have some decisions coming up in regards to next steps and handling Ethan's hamstrings. More updates will likely follow in the next few weeks.

The last few weeks have been tough for me in particular. With some changes (not all details are known), the clinic we visited in Germany has closed. Some say temporary; some say permanent. Thankfully none of the known reasons include health risks but turn towards more political & ethical ventures.
Needless to say, people have been taking it upon themselves to gobble up the "scandal" and to suddenly become 'experts' on the topic. Labels such as "pathetic", "desperate" & "Suckers" have been placed on many parent(s) who have taken their child for treatment at the associated clinic.
In the last few days, I've received some harsh emails-none of which I have commented back on but instead have deleted; one comment regarding my son directly and one questioning how I can call myself a good mother. Both very hurtful. I realized that when we went into this adventure, that it was full of controversy but in turn it frustrates me when people like to comment in such a manner without knowing all the facts. In the end, I'm looking it as an opportunity to learn how to be a stronger/wiser person and as a chance to develop that "thick skin" everyone talks about.

Overall, whatever the case, what I can say is that my wonderful son has IMPROVED SIGNIFICANTLY and is enjoying life more than ever--thanks to the treatment. Neither myself nor my husband have any regrets.

What amazes me even more is that people are continuing to seek treatment and while the door to Germany may have closed, parents are continuing to seek opportunities to go to elsewhere to have their loved ones treated in hopes of seeing improvement. They will not give up and for that they have my full admiration and support.

That's about it for now but again, prayers & support are much appreciated as we lumber though this time of uncertainty and craziness.

Happy Spring!

Well, it looks as though after much ado, Spring has finally arrived to North Dakota. Things have been going well and we continue to see positive changes and growth in Ethan. For the 1st time in his life, he's able to ride a bike. We were fortunate enough to have additional funds in Ethan's "Germany" account whereby we purchased a special bike that he was comfortable on and supported his needs. He picked out a lime green bike, with a little basket in the back that he can put things in. A video of his very 1st time can be seen below. That was on a Tuesday...by Sunday he rode 1.5 blocks while we took a walk along side him..He loves it! Now, all we need to get is some Toy Story decals to put on the bike and we'll be really set.
Outside of that, Ethan has decided to learn how to climb a ladder and proceeded to climb up the 5 rung ladder into our playhouse and then went down the slide (on his tummy) all by himself. Of course mom was having a heart-attack just waiting for a fall but as Ethan put it... "mom, I can do it--SEE???!!!" He's having a blast with his new found freedoms and the smile on his face really shows it.
In addition, he's growing like crazy as it seems I'm buying him new jeans all the time (my husband is convinced I'm just shrinking them). Its fun to see him stretching out and moving out of that "little boy" phase.

We see the orthopedic surgeon in mid-May regarding Ethan's progress and will be discussing Hamstring surgery as Ethan's hamstrings are still short from the past tone in his legs. Stretching helps some but will likely not be enough to get him stretched out to where he really needs to be in order to stand up straight and without support. For the time being however, he continues to get faster and faster with his crutches and his footing too has showing improvement over the last few months.

We're truly excited to see what the summer months bring...Stay Tuned! :-)

Well..that's its for now. Until later..


Lisa

Ethan's 1st bike ride

Snow, Spring and more Snow

Well, I can't believe the last "actual" update was February 6th! Wow--where does time go?
Ethan continues to do well! He has grown so much that its getting hard to carry him very far. He's getting extremely long and lanky. Its kind of fun to see his pants get shorter and shorter.
It seems that Spring will never arrive as we've had some nice weather with considerable melting and then mother nature decides that its not quite time for green grass and flowers and delivers another few inches of snow. Ethan is patiently waiting for the sidewalks to clear so that he can get out and play. He has informed us on a number of occassions that we can get rid of the wagon this year as he will be riding his bike and NOT in the wagon like other years. He makes me laugh and I can't help but admire his determined behavior. Needless to say we still have to get him a bike but have been waiting so not to torture the poor boy with having to simply "look" at his bike in the garage vs. riding it.
We also had another wonderful opportunity as a 3rd grade class from Henning MN interviewed me about Ethan. Based upon the Forum newspaper article they chose to write an essay on Ethan and what its like to have a disability. The essay is also part of a competition. The kids all wrote Ethan (and myself) "thank you" cards and included lots of words of encouragement... It was awesome and I can't wait to read the final story in April.
Other than that, its been life as we know it. Lots of therapy, lots of work and TONS of determination. Our goal is still on target for Disney World next year (feb/march) and we are sooo excited. Ethan has set yet another goal for himself and that is to take his first independent steps at Disney World... time will tell if he'll accomplish that goal but with lots of determination and work, I wouldn't disregard the thought that he'll be able to do it. He is a true trooper!

Thanks for everyone's continued prayers, emails and encouragement--Its truly appreciated.

Well..that's its for now. Until later..

Lisa

Ethan--a year later

Milestones, Interviews and more...

Hello everyone,
This past week was another busy week for us with a few unexpected opportunities and some 1st time events.

The week started out with Ethan staying home due to not feeling real well. It was nice to have him home with me for the day and in between working at home that day, we had some much missed snuggle time. Needless to say, after a few home-made chocolate chip cookies, he started to perk up and felt better by evening. As Ethan put it... "Mom...can I have 2 cookies? Cuz I'm really sick and they will make me feel better cuz you put love in them"... Who could resist that line so yes...he got the cookies.

The rest of the week went pretty smooth until Thrs when a friend of mine from MN called me (They too are schedule to go to the Xcell Center)and asked if I would share our story with a KSTP Channel 5 in Minneapolis. I was honored to share the spotlight with her and immediately agreed. So on Friday, I conducted a phone interview with KSTP...The story aired that night.

Also on Friday, Ethan was interviewed again by the Fargo Forum. We had to laugh as while it was after school and his sister was home; he quickly dismissed her to the basement and added "Just until after my interview, then we can play Wii"... We are anxiously awaiting the new story to come out and will post the link here.

Yesterday, Ethan decided to do a few 1sts... He went bowling for the 1st time ever (not counting Wii Bowling)and tied with his cousin Lauren...he was pretty excited about the 2 spares and 1 strike he got and he was just as excited when his sister, Ashlee got a strike as well. Then, he walked up stairs with his crutches...He also stood for 3 seconds last night and has been moving around furniture like crazy. At times however I have seen what appears to be the want to take independent steps--we just haven't seen him do it; but you can tell the thought is there.

Outside of that; Ethan continues to walk more and more with his crutches every day. He walks with them while shopping; in school; at church; and in the house...he loves the feel of independence and he's even getting really good at opening doors with them as well as turning the TV on/off. He can even go backwards!

We are anxiously awaiting for some of the snow to melt and for spring to arrive. The kids are getting antsy to ride bike and to be outside again. As spring nears, Ethan will get his own bike as well as a helmet/pads for the 1st time. He's desperately wanting a Toy Story 3 bike so I guess we'll see what we can find. :-)

As always...thank you to everyone, for the continued prayers and thoughts, they are being heard and felt--keep them coming. :-)

Well..that's its for now. Until later..

Lisa

6 months after the stem cell treatment --Ethan Radtke using crutches