Ethan's Desire

Ethanhood

2011-12-27T11:43:00.000-06:00

Merry Christmas!

2011-12-24T13:59:00.000-06:00

Wow...where did the time go? I can't believe its the end of 2011 already and the holiday seasons are upon us again.
Everyone is doing well here and we're all enjoying NO snow this December. Yes, its odd being North Dakota at the end December without 4 feet of snow on the ground but its greatly welcomed. We also can't complain about the beautiful temps we've seen...40 above is just unheard of at Christmas time but again, its EXACTLY what I wanted for Christmas! :-)

Anyhow, I wanted to take the time to thank everyone for their continued support and prayers over the last couple of years. I have to be honest, I've been a little "woe is me" in watching Ethan the last few weeks. While his tone hasn't increased and he's still on the go, his bone twists have become much more evident whereby his feet are now starting to turn inward. It doesn't seem to slow him down at all and he still utilizes his crutches very well but it to a mom, its a definite concern. We're hoping that the surgeons in Mnpls will agree with us as well and agree to do the orthopedic surgery to correct these bony deformities as that will be our only solution for the time being.

Nevertheless, its the comments that are posted on this blog along with the support of my many friends that pull me up by my bootstraps and keep me moving forward. THANK YOU!

To keep this short, Merry Christmas and Happy Holidays to everyone. We will keep you all updated as to our progress as we move into and through 2012.

Until later,

Lisa

A Quick Update

2011-11-18T14:02:00.001-06:00

Just wanted to pass along a quick update while I had a few minutes. Ethan continues to do well. We will be returning to Mnpls for further surgery (what exactly will be fixed is yet to be TBD) but that will be in early 2012. We're also switching medical teams and will be going to the Shriners Hospital for Children. We are optimistic on what we'll be told needs to be done to get Ethan on his feet and moving forward.
For now, we are gearing up for the holiday season and for 2 very special birthdays. Ethan and his twin sister Ashlee, turn 7 at the beginning of December so the birthday list has been presented and we are getting ready. Other than that, things are going well. Ethan continues to be "independent"...in fact he told the bus para that he didn't need help getting his backpack and getting off the bus..."I can do it Myself!"... If he keeps up that attitude she jokingly commented she may be out of a job. He holds the flag and helps out in the classroom and is doing quite well at everyday tasks, so overall we are making progress. His bony deformities are the most evident right now and continue to become much more noticeable as he grows. He continues to show no "evident" signs of any seizures associated with Cerebral Palsy--yeah. Somedays I wonder as he has an incredible tendancy to exhibit "selective hearing" and will completely tune you out...however he is also male so I continue to keep that in mind as the most logical answer.

I know this is a short and somewhat non-eventful update however I just wanted to keep folks up to date on where things are at.

Until later...

Lisa

Steps of Success

2011-10-25T20:03:00.001-05:00

More steps

2011-10-25T20:03:00.000-05:00

and the steps are just beginning....

2011-10-25T20:02:00.000-05:00

More suprises

2011-09-28T11:01:00.000-05:00

Well Ethan is at it again...this time surprising us all by deciding to take steps all by himself. Granted they are very shaky, small steps but miraculous steps none the less. Below is the video of him attempting (and succeeding) to walk by himself. Small steps will eventually lead to big strides...

Ethan's 1st steps

2011-09-28T10:58:00.000-05:00

Ethan...NO Running!

2011-09-10T15:08:00.000-05:00

Ah, where did our spring and summer go? Yes, it seemed to go as quickly as it arrived. School started on August 26th (or thereabouts) and the kids were off to another adventurous year of education. Ethan and Ashlee were very excited about being 1st graders, Connor was hesitant about being in 3rd grade as the term "homework" now entered his daily vocabulary and task journal. So far however everyone seems to be handling his/her own and doing well-- Ethan in particular seems to taking right off with this teacher--of which I am very thankful for. In fact, right off the get go, he got a 100% on his very 1st spelling test! Yahoo!
Outside of school, its the typical routine and we're still outside playing and on occassion riding bike. Nevertheless, Ethan is becoming quite fluent with his "crunches" (as he calls them) and we are often seen flying around the stores with him in tow... In fact the last 2 times in Wal-mart I found myself saying words I never thought I'd hear myself say... "Ethan Michael Radtke--STOP RUNNING or your in the cart!"... I literally had to stop and repeat that phrase to myself and then looked at my husband and said..."Did I really just say that?" To let you know how that story ended... Ethan opted to NOT stop running and he did run the consequence of riding in the cart (as we would have done to his brother/sister too if it were them)for the short duration of our shopping trip. Bottom line though is that he is mobile, moving and loving it!
We have an appt scheduled at the end of this month to re-do the Gait Analysis Lab in Mnpls so that will tell us what our next orthopedic surgeries will be as we still have some bone twists and muscle lengthenings to deal with. We're hoping the surgeries will be this year yet...With that being said, DisneyWorld will likely be put on hold another year until he can get physically stronger. The kids are bummed but we think it will be the best for everyone... Another summer trip is being planned however as we may take in the Omaha Zoo and some other sites next year.

The rest of the family is maintaining though and not skipping a beat. We again are involved in HOPE Incorporated and went to our 1st fall Soccer game today of which all 3 kids participated. The energy is so great there and I often find myself energized just by watching the kids. As a line in a movie went "I don't need Easy...I just need possible"... these kids portray that statement on a daily basis as they do the things most people never would dream they could do. In addition, HOPE Inc defintely plays a part in the possible piece as well by helping the kids achieve their goals. All in all they are an incredible group to belong to...

Anyhow...I've went on for a while now. Thanks for your continued prayers and support.

Until later,

Lisa

A call from Washington

2011-07-28T20:58:00.000-05:00

I've never considered myself a political person but before my own eyes, I've found myself becoming a lobbiest for Stem cell research. The other day in fact, I received a call from Washington DC. It was one of our ND senator's offices and they had seen Ethan's videos...We're hoping that Ethan's progress will push the funding committee to invest the allotted funds toward adult stem cell research in the near future. We had always joked about us going to capitol hill and now here we are... it might be closer to reality than we realized...or so I hope.

Other than that, we are doing well. Ethan is officially POTTY TRAINED! Yeah!!! Yet another feat that we weren't sure would ever be accomplished but he did it and better yet...he doesn't need any help! Yeah! Anyhow...that's likely tooo much information but it was exciting so I thought I'd share.

I've posted our latest TV interviews...(see below)...enjoy!

Until later...

Lisa

Ethan 1 year later-News report 2.mp4

2011-07-28T20:30:00.000-05:00

Ethan-1 year later

2011-07-28T18:40:00.000-05:00

I believe in Miracles--our 1 year anniversary

2011-07-14T15:03:00.000-05:00

Where did the year go? Tomorrow is July 15th and it was one year ago that we were in Dusseldorf, Germany waiting for our little miracle to happen. Today we're not waiting any longer as our miracle is here.

I think back to that day...it was a day of many tears. Yes, I was afraid...more afraid of the unknown than anything but I truly think that they were more tears of happiness than anything. The one thing that our child wanted...we were attempting. It wasn't that one toy that your child "HAS" to have...it was something simple...a pair of legs that work. What more could one little boy ask for?

Today... we have a little 6 yr old boy, running (okay...walking very fast) with his crutches. He climbs our playhouse ladder, goes down the slide, kicks the ball with his brother, rides a bike (and wipes out too), he does it all (including gets put on timeouts)... He's an every day run of the mill little boy. He loves the Nintendo DS and the Wii... and more times than not, he loves to pick on his sister (sometimes he sits on her)...

Life is good. Yes, we still have our challenges and his walking pattern might not be "pretty"...but you know what? I don't care. My child is happy & he's successful in reaching his goals at this stage of his life. What more could a parent ask for. We have absolutely no regrets and would do it again in a heartbeat.

Anyhow... today we had 2 news inteviews with FOX and NBC. I'll post them as available. Both went incredibly well and even the news people were astonished at where Ethan is today. He definitely has come out of his shell.

Thank you to everyone who has supported us this past year, we couldn't have made it without your support and prayers.

Until later...Lisa

Summer Time Enjoyment and our Next Steps

2011-06-05T10:30:00.000-05:00

June is FINALLY here as is our warmer weather!

The kids are having a great time being outside. Ethan continues to get stronger and its so much fun watching him walk around the backyard doing things this year that we never imagined him ever being able to do. Over the last few weeks in May, he decided to start "walking" down and off the bus steps. He simply got his footing, grabbed the rails and carefully walked off. His bus driver, Lois, was so helpful and made sure that he didn't fall each and every night. She was a God-send! Never the less, the pride that showed on Ethan's face every night was something that made me beam as well..."Look mom--I did it" and then with a headstart, he'd race to the front steps, giggling all the way as he walked with his crutches, leaving poor mom in the dust...
Bike riding has gotten better and our rides are getting longer...hence my "workout". One of Ethan's favorite "games" is to let me get close enough to him; he'll look back; squeal and then put his pedaling into high gear...this game is repeated by the little stinker many times-

Well...our next journey begins in September as we'll be driving to Mnpls for a couple of days to repeat the Gait Lab (we previously had one back in Feb 2010) to determine what surgery needs to be done next. We're suspecting that some bone twists will need to be corrected along with some other orthopedic needs but we'll just have to wait and see what the dr's want to do. Honestly...the thought of driving in the cities gives me an anxiety attack but...we'll make it through as we always have and as one of my friends reminded me of the other day...we won't have to go through customs (which was one of the things I fretted about when we went to Germany last summer--don't ask)... Our only other concern at this point is how surgery will all play into our plans to go to DisneyWorld next year (planned for end of Feb/1st of March)... but again...it will work out and we will cross that bridge when we get there).

Otherwise, life has been good...no more nasty emails/comments since my last post. So I'm hoping it stays that way. After my last post, I had so many supportive comments from friends/supporters--THANK YOU! Those comments mean the world to us.

Well..that's its for now. Have a great summer...Until later..

Lisa

Finding a bridge over troubled waters

2011-05-18T13:47:00.002-05:00

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!

2011-04-27T17:45:00.001-05:00

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

2011-04-19T20:35:00.000-05:00

Snow, Spring and more Snow

2011-03-25T17:29:00.002-05:00

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

2011-02-26T17:33:00.000-06:00

Milestones, Interviews and more...

2011-02-06T13:53:00.000-06:00

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

2011-01-29T11:48:00.000-06:00

Ethan's new legs...that work

2011-01-13T11:03:00.001-06:00

Hello everyone,
Sorry I haven't updated our blog for a while but its been a little bit of a whirlwind lately with all of Christmas activities.
Well I'm not one for suspense...and from the title of my entry...I'm sure your wondering what news I'll be passing along to you so i'll pass along the news.
Ethan decided that he's had enough of his walker and started using his crutches this past week. He was scared to death the 1st time but a few days later decided to walk across the room a few times with them and all with complete ease. Yesterday in school, he continued to practice too in the hallways. The excitement that he shows...is unmeasurable. He still uses his walker and chair to get around longer distances but his walking is sooo much nicer with his crutches as he has to go slower than he does with his walker.
Needless to say, I've been in touch with our travel agent about starting to plan for the much promised trip to Disney World next year (2012). The kids are sooo excited.
Who would have thought that just a few short months ago Ethan was in a wheelchair and today...using crutches. Miraculous...

We also joined up with a local group called HOPE INC (watch the January 2nd episode of Extreme Home Makeover to get to know the family who heads the group and what HOPE Inc is.)...
Last Saturday we played Sled Hockey for the 1st time...Connor and Ashlee too got to participate. Mom pushed the sled for an hour and thought I was going to bed ridden the next day due to sore legs but...overall it was a blast and weather permitting we'll be back this Saturday. Ethan and Connor had a great time-Ethan scored 3x and Connor 1x...Ashlee wasn't too sure about it.

Our journey truly continues... Ethan continues to make definite progress. His tone reduction has been compared to that of what one might see with after having a rhizotomy surgery... He still likes to pull up on his toes a bit but we are confident that with stretching and strength building some of that should be resolved however due to short hamstrings, we may have to have a hamstring lengthening surgery in the future but we'll cross that bridge when we get there...For now, we are thrilled with the progress Ethan has made and continue to see daily miracles.

That's all for now...stay tuned!

Lisa

New Braces

2010-12-18T11:07:00.000-06:00

Merry Christmas everyone! Its been quite a year that's for sure. I remember last year at this time when Ethan came up to me and asked for "New legs that work!!!"...hence our journey began. Needless to say Ethan has his new legs that work...it took a trip to Germany and and an orthopedic surgery but we have loose legs and flat feet! Yesterday we got our new AFOs (braces) and now we can go to town on walking. Ethan is walking better today (even without his braces) than he has EVER walked (even at his prior best). Now that we have the new braces, we're really going to focus on walking more with the walker and retire the wheelchair as much as we can...once that is accomplished, then we'll move on to the crutches.

Thank you to everyone for your continued support and prayers--we couldn't have gotten to where we are today without them. To all of my new friends I have met along the way this past year... you mean sooo much to me; thank you! I am truly blessed to have met so many WONDERFUL people ...you are treasured beyond words.

I will be posting some new pics/video shortly...so stay tuned... Til then, Happy Holidays!!!

God Bless--

Lisa

New link

2010-11-27T10:42:00.003-06:00

Hey all...I've posted Ethan's latest new's story to our blog...check it out under Ethan's Links!

Follow up story

2010-11-25T08:18:00.001-06:00

Catch Ethan's update from last night on KVLY LIVE (http://www.valleynewslive.tv/) @10 (11-24).

The casts are off!

2010-11-15T14:14:00.001-06:00

Well, its been a week and Ethan's casts are off. The words out of his mouth (after screaming above the saw--YOUR GONNA CUT MY LEGS OFF!!!)...were "Look mom--my feet are FLAT!!" Ethan just sat and looked at his feet in amazement; he was so proud. The surgeon too was pleased with the outcome as he watched Ethan sit on my lap with 2 dangling legs and wiggling toes. It was an amazing site. Needless to say we left with huge smiles on our faces. I was so excited however that I forgot to get gas until the little bell rang and reminded me while I was in the middle of a construction zone somewhere on interstate in South Dakota. My heart hasn't raced so fast in a long time. Thankfully we were able to make if off the road and to a gas station about 5 miles off the interstate... Whew!!! That was more than enough excitement for my day.

The rest of the week was busy... On Wednesday Ethan decided to walk with a walker at school (about 10 feet) and without braces on... just very naturally too. Talk about EXCITED!!! On Thrs, he stood up straight in the therapy pool (with support from behind) and interviewed with the news reporter... He also decided to try pedaling a bike... as long as we hold his feet in place; he can pedal just fine! He was laughing so hard he almost fell off...

We still have to get his new braces molded/sized but due to some serious anxiety issues we may have to get some sedative as Ethan is terrified to have anyone touch his ankles/feet. We'll be visiting with our family dr this week to see how he'd like us to approach it. We know that things will improve with time but its going to take just that...time. Trust needs to be established again after some of the pain the kiddo has been put through so we're giving him some lee-way.

Other than that... he just keeps surprising us with all sorts of neat tricks... Every day is a new day and full of excitement.

Thanks for the continued prayers and thoughts... we live off of them and they're what keeps us going day to day.

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

Lisa

2010-11-03T17:10:00.001-05:00

Just a few more days til Ethan's casts are off... he is VERY excited to have his feet back and is anxiously awaiting a much needed bubble bath. Ethan continues to show progress and surprised us by sitting unassisted in the middle of our kitchen floor with his legs extended in front of him... all while reading the Toys R Us toy catalog... My husband and I were delighted beyond words.

For now that's about it but there will be more news to share next week!

just a quick update

2010-10-12T17:49:00.000-05:00

Hey all...its been a couple of weeks since my last update. Not much has happened as of late. Ethan is continuing to amaze us and we are so excited to get those casts off!! Only 4 more weeks to go and we can start making some tracks...pretty exciting. Of course, this week it was announced that again, our insurance options for this next year would not cover more than 90 visits of combined therapy (OT & PT; For those of you counting...that's 45 visits each and less than 1 visit a week for the year) so we're back to the battleground trying to figure out what we'll do in 2011 to help get Ethan the therapy he needs. We've all come so far to be torn down by limitations by Insurance restrictions. Needless to say, the gloves are on to find something that we can afford and manage.

Outside of that, I've had some challenges whereby I ended up with pneumonia. After 2 rounds of antibiotics I think I'm on the mend. Just taking it slow and easy so I can beat this crud once and for all. Thankfully the kids are all okay.

Outside of that we just thank our blessings for all of the new things Ethan is demonstrating he can do. Its truly exciting and amazes us each and every day...

Until later...

Lisa

Surgery Update

2010-09-28T20:46:00.000-05:00

Well, we are home from having surgery. It went well. In fact it went so well, the surgeon didn't even admit Ethan to the hospital! He announced "Success!" and was happy to say that he didn't have to do the reconstructive surgery he had originally thought he was going to have to do...in turn he only extended the achilles tendons in each foot/ankle. More good news... because they only extended the tendons, they also opted to put Ethan in short casts (which come just below his knees) vs. long casts (which would have much farther up)... We stayed in Sioux Falls for through Sunday and had some fun (took in the zoo; saw the falls, and had a quick visit to Toys R Us) before we returned back to Fargo.
So far, Ethan is being very tolerating of everything. His only complaint of the casts (outside of not liking having a sponge bath) is that his feet are hot. We're hoping that the next 6 weeks goes by fast.

Needless to say, Ethan went back to school today and had his friends/teachers sign his casts. He was a tad bit tuckered out when he got home but he had a great day and was happy to see his friends again.

Thanks to you all for the prayers and support...they're being heard and answered. :-)

Until later... Lisa

This little piggy went to market...

2010-09-21T16:30:00.001-05:00

On Saturday, Ethan pulled a new trick out of his hat...while getting his pjs on, I happened to grab his foot and thought I saw movement of his toes...of course I told him..."do that again.."...."and again" ..."and again"... then I grabbed his other foot..."Do it Ethan!".. "AGAIN!"..."AGAIN!!!". To my delight Ethan was wiggling his toes...and just his toes, not his foot! Granted they were baby movements but yet isolated movements of his little piggies! Of course, he knew something was going on as Mom was bawling like a baby and acting a little crazy...so now, he asks..."Can we wiggle my toes tonight mom?...and you need to cry too!"...

Ahhh...the simple joys of witnessing something for the 1st time in life. It's a precious gift.

I have to be honest with you though...I'm scared about the surgery. Ethan doesn't really know all that is involved with what's about to happen in a few short days and my stomach churns to think we're taking away all this new found freedom. Granted it will only be for a few weeks, but the thought of putting my little boy through more pain and hardship honestly is starting to churn at my stomach. Obviously we know its for the best but part of the mother in me says "chicken out and cancel"; despite the futuristic possibilities.

Thankfully I have a wise and strong husband who won't allow my feelings to get in the way. James is also taking Ethan in for surgery to ensure I don't just pass through Sioux Falls and instead opt to visit Omaha or Kansas City. :-) I'll follow later on Friday with Ashlee and Connor so that I can bypass the screams of terror as they get Ethan ready for surgery.

Anyhow...we will update folks as we are in Sioux Falls beginning this Friday. Thoughts and prayers are much welcomed...not only for Ethan but for our entire family.

Sickness this week has also been evident (mommy has upper resp. infection)...so we really need some renewed strength to get us through these next few days.

Until later...God Bless.

Lisa

what seems like yesterday was 9 weeks ago today

2010-09-16T08:22:00.000-05:00

Another weekly update and Ethan proves to be more and more limber in his legs. He has proven to us that he too admires his "new legs" and he is continuously showing off his "moves" to anyone who will watch. Its quite amusing. He is also getting somewhat used to his new found fame and proudly got off the school bus on Monday saying..."Mom! I'm famous" (Ethan's continued story was front page of the Fargo Forum)... however on Tuesday he also told me "Mom...I don't want to be famous anymore, I just want to be Ethan"... he is a shy boy and while he likes the attention at times I think he is perfectly fine without it too. Needless to say, as I told him, he is helping people and its not fame we're after...its educating others and showing the changes that have come from this wonderful treatment. As of this week, I have been approached by several new people, asking about the treatment...and not just people with children who have CP, its been people who have MS and other conditions. Its been a great opportunity to pass the word.
I also took a brave but noble step and wrote to our senators in ND; asking what can be done to further research, not only in our state but nation wide...what are we really waiting for. They will probably ignore the email but hey...it was worth the shot. I've learned, you don't get answers unless you ask the questions.

Next week we leave for Sioux Falls to have orthopedic surgery. Excited and scared as this will be the next leg of our journey but hoping it will be the one that gets our little boy up and moving again. Ethan isn't a bit excited as it involves doctors and people of the medical profession.I'm pretty sure he will be mad at us for a while but someday, when he has a pretty girl on his arm and he's dancing on his own 2 feet...he'll thank us. He'll forgive us too when he's having fun at DisneyWorld... Not sure when that will be as Ethan will have to determine the timeframe but with the help of his brother and sister...I'm sure we'll see Orlando in the next year or so.

Anyhow...better go. Take care everyone and please keep us in your prayers...they are valued beyond words.

Lisa

2 months later..

2010-09-09T17:19:00.000-05:00

I can't believe its been 8 weeks since our treatment! Lots has changed over the last few weeks ...and to my delight, people (other than our immediate family) have noticed the significant changes.

Our family dr. just this morning said "Wow, those stem cells are working...his legs are loose!"... a news reporter over last night to do another story, echoed the same words. You can just tell that he is much more limber. The overall changes make us all happy but to hear those words of "Its really working"...come from others;just makes me smile all the more.

School continues to go well, Ethan is making LOTS of new friends and is enjoying his time in the classroom. Its fun to see him make so much progress.

2 weeks from today we will be elaving for surgery in Sioux Falls, SD. Heel cord extension surgery will not be a fun thing to go through but it may be that final leg to this journey to get Ethan up and walking again... I hope so as honestly...this journey is getting to be long and quite tiring.
Needless to say its been worth it and I'd do it again in a heartbeat!

Until next time...

Lisa

Steps in the right direction

2010-09-02T11:32:00.000-05:00

Yesterday we had a surgical consult with our ped. orthopedic surgeon, Dr. Haft.

Ethan will be having an achilles tendon lengthening done to get his feet flat; a muscle transfer may also be done to get his feet straight and out of the inward pose that they are in today. Surgery is scheduled for September 24th. We are excited for this opportunity as we were told...we were definetly taking steps in the right direction.

Ironically enough, we also received alot of support and encouragement for going to Germany and having the treatment done which really brought smiles to our faces.

Ethan is pretty unaware of what lies in store for him but this step will be get him back on his feet and onward to achieving his next goal of walking with his walker. yeah!!! His hosptial stay will be at Sanford Children's in Sioux Falls which is a somewhat unique place as the hospital is in the shape of a castle! Its pretty neat. Once the surgery is done, the dr said he will be in full leg casts 4-6 weeks to get the stretch set in his muscles. Granted, I don't foresee those 4-6 weeks as being a "fun" time but once those casts are off...I can't wait to see what happens! :-)

Lisa

6 weeks ago...

2010-08-30T14:55:00.000-05:00

Just a quick progress report...we are at the 6 week mark and wow what a month and a half its been. Ethan is doing well. He daily shows us new "flexible" tricks with his legs but continues to struggle with being on his feet. The timeouts have been less due to his better behavior, so we're improving somewhat there. He still will not let us touch his feet/ankles so we're not making alot of progress with Physical therapy yet.

Tomorrow is a BIG day for us ...

A) its Ethan and his twin sister, Ashlee's first day of Kindergarten!! Ethan is very excited; Ashlee is excited too but not like her brother! :-)

B) We leave tomorrow night for Sioux Falls, SD to visit with a pediatric Orthopedic surgeon on Wed a.m. to determine if heel cord surgery would be appropriate

I am of course nervous, scared, excited about it all...school and the doctor's appt.

Needless to say we will update everyone on the outcome.

Well, I had better run; thank you to everyone for your continued support & prayers... its appreciated so very much. :-)

Lisa

Week 5--Wheelchair adventures and more Time Outs!

2010-08-19T09:29:00.000-05:00

Well, its hard to believe its been 5 weeks already. The time has truly passed quickly.

Ethan continues to do well but has also been continuing to express a "bad attitude" resulting in more time-outs. I'm confident that this has nothing to do with the treatment but instead just a result of a variety of things: Exhaustion; discomfort and pain; frustration; and partially just him with some attitude as screaming & loud use of his voice has been his tool of communication when something gets taken from him or he wants to show his displeasure.

Needless to say, Ethan will no longer let us even touch his legs without screaming until he's blue in the face and in tears for fear that we will attempt to stretch him. It was so bad yesterday that his physical therapist left mid-session as he was so irritable. We were able to get in to see a pediatric orthopedic surgeon on Sept 1 to discuss muscle lengthenings so we are excited to see what that conversation brings as with the tone disappearing more everyday, fixing those "short and extremely tight" muscles are our next step. We are hoping that Ethan will be able to keep some composure as when he is relaxed he is a noodle but if he tenses up, we are fearful the dr will not be able to get a good idea of what we are dealing with.

Our mission to get a wheelchair this week was successful as his ability to stand and use his walker has been depleted due to the tone disappearance. Ethan did smile when he found out that HE could make it move in various ways. Before we left the store, he had turned in a circle, went backwards/fowards and side-side...All with a smile on his face. Needless to say, by the time we got out to our vehicle, it was " Please get me out of this thing Mom!"... I smiled...at least he said "please".. Ahhh...Yet another hurdle we have jumped and can cross off our list. He continues to tell us though that he doesn't want to use it long...just for a little while.

As always, your continued thoughts/prayers are much appreciated.

For today...that's it! :-)

Lisa

4 weeks later

2010-08-14T20:51:00.000-05:00

Hello everyone, its hard to believe that its been 4 weeks since Ethan had his treatment. Lots has happened since then, mostly small things that have an impact in a BIG way. His balance has improved significantly...and has been on many a time out this past week....While that's not the "good part"...what is good is that while on those time outs, he's been sitting on his bottom on a regular chair (without arms) and his balance has been incredible! Before he would have had a startle reaction as he was fearful of falling...now, nothing but a big pout lip and a "Mommy...you are mean!"... He sat on a time out one day for 20 minutes. The other thing I've seen a huge difference with is brushing his teeth! Before his tongue got in the way and it was hard for him to keep his mouth open very long...Now he opens really wide with a much more controlled tongue. Our physical and occupational therapists too have seen much more controlled differences in his ability to keep his hands open as well as how he walks on his knees. Its been an amazing journey and with all journey's there are still challenges. We are now awaiting an appt call to see an orthopedic surgeon to help address the tight (and short) muscles in his heel cords and hamstrings. Once that is addressed and we take care of those struggles (which the stem cells will not help), we should see considerable strides. We realize it will not be an overnight fix but with therapy and persistance I've been told that there is a very likely chance Ethan will walk without crutches or a walker one day. WOW...that's all I can say. I still hold cautious but the little glimmer of hope makes me smile.
Monday will be a tough day for us however as we go to get Ethan's wheelchair. Due to the amount of tone he's lost combined with the tight muscles in his heel cords and hamstrings, he can no longer walk very far as it takes way to much energy and strength; so until we can get the surgery, its been recommended to put him in a chair. This will be hard for all of us, especially Ethan, as he is a very independent boy and one that likes to move on his own 2 legs. I'm nervous and worried about his reaction but know that the prayers are on their way.
Thank you for all those who have reached out to me for status checks and/or information. I have met sooo many incredible people along the way and none of us would have traded this experience for the world.
Good Luck to all of my new friends going to the Xcell Center in the next few weeks (or for those that are there now)...our thoughts and prayers are with you all...

That's it for now... talk to everyone soon!

Lisa

Almost 3 weeks later

2010-08-04T09:04:00.000-05:00

Well folks, almost 3 weeks later and Ethan can now undress himself (top to bottom) all by himself! He considers it a cool trick and a step towards independance. While at times I find him unclothed at inappropriate times, I'm considering it a blessing in disguise and know that those cells are doing neat things.
Needless to say I'm feeling a tad bit down and out today. Ethan incurred a slight strain injury to his foot/achilles tendon this past week however the doctor assured us it would be fine and to take it easy on that foot. We continue to watch it.
We are now also considering orthopedic surgery sooner vs. later. Ethan's muscles have contracted so much the last few months that he cannot use his walker and will need his chair. To stretch his legs has proven to be extremely painful and to get his AFO's (braces) on has also proven to be a challenge due to his short muscles. We will be visiting with our dr from Minneapolis (Gillette Children's Hospital) this next week to see what our possibilities are.
Again however this will mean more time off from work and away from the family as it will require 1-2 trips for evalulation and scheduling. While the surgery itself would mean only 7-10 days away from home, it still makes me grimace.
Ethan has come so far and has achieved so much, its hard to see him regress in this way. While our prayers have already been answered due to a successful treatment, we hope our next miracle will be seen through the continued orthopedic surgery/treatment.

Your prayers and support are much appreciated. Until next week...

Day 13...and progress continues

2010-07-28T21:24:00.000-05:00

Well, its been almost 2 weeks since the treatment and we continue to see very small strides in improvement. Last night I sat Ethan on the counter as he was to heavy to hold and talk to...I immediately noticed a change as he was keeping his legs separated on his own!!! Some might say "so????"...before when I would sit him on the countertop his legs would be stuck together with no separation...a true difference to us. Tonight i layed him down to change him and was able to work his legs like never before...It just makes me giddy with delight to recall and instantly slaps a smile on my face.
Moving foward, once we get the tone under control (which we're well on our way with) we get to tackle the short muscles and the task of stretching them out as while the bones have grown, the muscles haven't stretched. We are excited to see what will happen with PT & OT.

That's about all I have tonight to share; our little miracle boy is moving along and remaining the brave little champ that he has proven to be.
To close, Ethan smiled at me the other day and said "Mom...can I get a bike yet? My Legs are better!" Ahhh...The faith of a child is a miracle all by itself.

5 days later...Look at those little cells work !

2010-07-20T06:54:00.000-05:00

well its been 5 days since the treatment and as of this morning changes have been noticed...while slight and maybe unnoticeable to the public eye, we as parents have seen things that we have not seen Ethan do before. We have been cautious not to read into things however this morning when Ethan crawled vs. knee walked and sat in a chair (a full sized chair) like he's NEVER been able to before...that was what finalized our thoughts that those little cells have begun their work. The tone in his legs has subsided a wee bit, not alot, but enough that knee walking is becoming tough as the tone isn't there to stabilize him. On the other hand, its allowing him to position himself in ways he hasn't before.
Things are working; they may be small but we also know that small things turn into BIG things one day! Thanks for the continued prayers and thoughts!

Lisa

A few tips to those going to the Xcell Center

2010-07-17T12:47:00.000-05:00

Okay...that wasn't my last entry...but this will be. Here are a few tips for those who may be going to the Xcell Center in the near future:

-Nothing is ever COLD ...expect cool water but not cold.

-They serve LOTS of cold cuts (salami --which is really good) and other meats & cheeses

-Watch for Carbonated water and regular water (Gas or No gas)...there is a true difference!

-Very few places have air conditioning...the Xcell Center does not have air...only open windows.

-Be prepared to meet WONDERFUL and INSPIRATIONAL people...get names and pictures as you will meet friends for a lifetime.

-Talk to the dr's; ask questions as they are so open to answer any concerns you might have.

-If you opt for the Transportation package (which I would definately recommend)...the drivers are wonderful...Especially Ralf! He is the best!

-The NCS therapy is very interesting. A whole new concept to explore and one to certainly try.

That's all the tips I can think of right now...if there's more I'll tag on later! :-) And as usual...any questions...just ask!

Lisa ...

Today Dusseldorf-Tomorrow Fargo: Our final thoughts

2010-07-17T12:40:00.000-05:00

Well, tomorrow we will be almost to Chicago and back on US soil. We have had quite a week and while it was enjoyable and a memorable time, we are ready to be home.
I have learned so much this week (including a few German words and how to read train maps) but mostly I've learned about trust and faith. Such little things can sometimes be the hardest things to learn.

Ethan continues to do well, no crazy changes yet but I know that they will appear in the next few weeks...nothing ever comes as you'd like or expect so I'm sure the changes will come as they will. Otherwise, outside of a slight headache which was gone by Friday, he is doing fine and is ready to be home (as we all are).

We wrapped up the final bit of the documentary film this morning. We are so grateful for our friend Machu, who took this opportunity to help tell Ethan's story and to bring awareness about to CP as well as to stem cell treatments. We were lucky and so blessed to have you with us. You are an inspiration and a dear friend. THANK YOU FOR EVERYTHING!

So...until we reach Fargo, this is our last update. I will continue to update as we reach new milestones so don't forget to check in from time to time. I love to hear your comments, thoughts and questions too so please feel free to let me know what's on your mind!

Lisa

West Fargo boy has stem cell treatment in Germany | INFORUM | Fargo, ND

2010-07-16T01:20:00.000-05:00

West Fargo boy has stem cell treatment in Germany | INFORUM | Fargo, ND

The treatment- Our day of miracles

2010-07-15T06:30:00.001-05:00

Well, its approx 1:30 pm in Germany and we are done! The transplant went smooth and Ethan woke up happy and smiling. He ate and drank some apple juice at the hospital and we were allowed to leave. We are now back at the hotel and have a calm rest of the day planned. The dr said they harvested 5 million cells with over 100% vitality...that is GREAT news! Typical collection is 2 million, so our chances of success increase. Now...its just wait and see and go from there.
We met one of my Facebook friends, Karen and her husband, James, from England who too had their little boy, Joel, over for a treatment. It was great to finally meet them and we had fun talking. The boys hit it off and had their picture taken together. We also met a family from Australia who were there with their daughter for a treatment as well. It was an interesting day...some tears, lots of smiles and overall a day I will never forget.
Thank you to EVERYONE for your thoughts, prayers and help...we love you all and couldn't have done this without you!

Until later, have a great day and we'll continue to post a few updates as we are over here. We will be leaving on Sunday (7-18) at 11:30 Germany time and will reach Fargo around 6 p.m.! Cannot wait to see everyone!

Lisa

Aqua zoo and tomorrow

2010-07-14T14:03:00.000-05:00

Today we went to the Aqua Zoo...for anyone going. Its very inexpensive ($12 Euros for a family pass) and it has quite a bit! Ethan had fun and we enjoyed ourselves too. I think his favorite exhibit was the penguins and the otters. They swam right up to him and put quite the show on through the glass. Also...food is relatively inexpensive here and its good...Different but good! Its been another long and hot day but tomorrow will be longer as tomorrow is the day our lives will change. I keep focusing on the good that will happen and try not to think about anything else although I must admit I am terrified at the thought of what might NOT happen too. Also a little worried about the side affects after the procedure as to see Ethan suffer with a headache, nausea or fever would really break my heart. Thankfully any side affects only last a few days but we are praying and trusting that he will be one of those patients who don't experience any. The procedure is at 10:30 a.m. and our ride will be here at 10:00. So far everything has been on time and running smoothly. I will update everyone tomorrow on how the process goes. So far however Ethan hasn't even complained about the extraction site and has left his IV in from yesterday as well.
Overall he has been a brave little man and one that has complained very little. He has made note however that he is ready to come home (as we all are) and has the countdown on for 4 more nights until he is back in his own med and with his brother and sister.

Until tomorrow...have a nice rest of the day and we'll chat tomorrow.

Lisa

Photos

2010-07-14T02:39:00.000-05:00

I've uploaded a few photos of things we've done and seen while in Dusseldorf.. I hope you enjoy. Please NOTE: Ethan is NOT drinking any "adult" beverages. We have found that in Europe drinks (sodas; water, etc) are still often served in glass bottles. We had ordered a water (no gas or non carbonated)at an Italian restraunt and they brought us this bottle of water. Ethan thought he was big stuff drinking out of a glass bottle...still not sure what the amusement was all about but he was being so silly that we took his picture. Needless to say, in a couple of restraunts we went to they did offer him a beer and in one place they even asked him if he wanted to pay the tab. He told him no and passed it to James. Smart kid! Today we are off to the Aquazoo before our big day tomorrow.
Until later!

Lisa

Day 2-Marrow Extraction

2010-07-13T05:31:00.002-05:00

Today we started early as our appt was at 9 a.m. The driver from the center was at the hotel by 8:30 and off we went. We were immediately taken to the appropriate floor and the anesthesiologist took James and Ethan back to the procedure room. I stayed in the lobby and waited until James came back out approx 5 minutes later. From that point we sat maybe 15 minutes and they wheeled Ethan out to the recovery room where they woke him up and got him moving. He wasn't very happy about the IV and loudly spoke his mind about it too. The dr jokingly said he thought he lost some hearing because of his screaming... :) As a result, they left the IV in so they can reuse it on Thrs without having to re-poke him. We had them make it into a makeshift type cast as Ethan has been known to pull IVs out in the past. So along with that we explained that if he keeps it in, they won't have to poke him again on Thrs; that too offered some incentive for him. :) So we are done for today, just resting and watching movies before heading out tomorrow to the Aquazoo and more train rides.
Next & final step is our appt on Thrs which has been changed to 10:30 vs 9 a.m.! :)

Lisa, James & Ethan

Day 1--Dr's appt

2010-07-12T13:42:00.000-05:00

Hello...we started today by visiting the Xcell diagnostic center and met with a rehab med dr. who showed us some very unique oral techniques that in the end will help with Ethan's balance and overall success in walking. Kind of odd but still intriguing. Then we went to the Xcell center and visited with the dr and the anesethiologist who reviewed the procedure for the marrow draw and the treatment. All is on schedule. We will be going in tomorrow (Tuesday) for the marrow extraction at 9 a.m. Thrs the treatment will happen at 9:00 a.m. as well. Honestly...I am scared to death. The dr's are nice and the facility is nice (definitely not as "posh" as you have in the US) but very clean and workable... The one bad thing is the heat and air conditioning is not a common thing here in Europe, so there is ALOT of sweating. :) Ironically enough though we met a couple from Sioux Falls SD & England who are there with their sons (who both have CP) too! I also met a lady from AZ who is being treated for degenerative eye disease. They all have interesting stories.
Ethan has been a trooper all day. This afternoon we went to Old Town and ate at a very old German restraunt. Ethan fulfilled his wish of eating sauerkraut and sausage. The Kraut wasn't what we have here in the states but it was very good. I found some authentic Kuchen and fell in love. It was sooo good! We walked by the Rhein and took lots of photos too. Unfortunately we didn't get to Colgne yet but maybe before we leave...we'll see. Better go...thanks for the continued prayers and support.

Love Lisa & James & Ethan.

We made it!

2010-07-10T11:07:00.000-05:00

We made it...safe and sound. Ethan did great on the plane and was a PERFECT angel...no exaggerating. He's a pro! :-). Needless to say it was a very long flight! Took a nap and we are going out to eat...likely McDonalds at the request of our son. Anyhow...more updates coming. Its very hot & humid here today so staying inside when we can. Until later...

Lisa

1 day and counting

2010-07-07T15:41:00.000-05:00

Well, tomorrow is our last full day here in North Dakota for a few days. I can't believe it! :-) Next Thrs will be our "miracle day" as we're calling it and we're trusting and believing for one.

Ironically enough a thought finally struck me today. People are truly unaware & oblivious to the topic of stem cells and their use. With all of the hub-bub on the news it really surprises me at how many people ask me "Why don't we do stem cell treatments here?" I happily explain but the confusion remains especially when I tell them where the cells come from.

In all of this, whether the outcome, in our case, is successful or otherwise, I hope we can bring awareness to the US public, light some fires and get some funding and movement on this treatment. Our great country needs to wake up and instead of "banning" the treatment because of political and other reasons, we need to start looking at opportunities to help people who are in need, children and adults alike. I keep asking myself, how many people with Autism, Cerebral Palsy, MS, ADHD could this treatment help? The answer back is unknown but unless we TRY, we'll never know.

So...for now, its off to Germany to find the answer and help the one we love.

1 week til take off

2010-07-02T12:49:00.000-05:00

WOW...where did the time go? In one week we'll be sailing into Chicago and off to Germany. The nerves are kicking in now as reality is nearing closer and closer. Needless to say the excitement that Ethan shows every day counteracts any fears I might have. My hopes are high I must admit. To see Ethan walk on his own, just merely the thought of it brings tears to my eyes yet all we can do is pray and hope for a miracle. We will continue to blog as we go on our journey ... Thank you to everyone who has made this opportunity a reality...words cannot express our gratitude for giving Ethan this chance.

Also bis zum nächsten Mal ... God Bless!

The countdown

2010-06-26T13:46:00.002-05:00

Hey folks,
Well, we're less than 2 weeks from takeoff for our adventure. Excitement and some nerves are brewing (mainly about the flight and how Ethan will handle the trip) but I'm sure all will be fine. I have to note that we are approx $550 away from our overall goal of $20,000. That is amazing!
I know i've said it before but THANK-You to everyone for your generosity.

Next weekend my friend, Machu, is coming from California to begin shooting a documentary on our journey. What an amazing opportunity to share the news of this treatment with others. We are very excited!!

Ethan is getting excited about our trip and is ready to tear into all the packages that his aunt/uncle gave him (especially the Buzz Lightyear). As the promise went though, he can't open anything until he's ON the airplane. :-)

To Infinity and Beyond...

2010-06-19T17:45:00.000-05:00

Today we took Ethan to Toy Story 3...it was so much fun to see his face light up as he watched his first movie on the BIG screen. He thorougly enjoyed the movie but on a time or two voiced his disapproval when his brother leaned over and snatched some of his popcorn..."Hey...that's MY popcorn"!
The rest of the time...he sat on my lap, mouth gaping wide open. Afterwards his review was "Super movie mom!"...I can only imagine the review he'll give daycare on Monday...Oh and he's promised not to throw any toys against the wall from this point on.

Once we left the theatre we took everyone onward to the zoo. Granted our zoo is somewhat small (okay its tiny) but there are still some animals. Again, happy as a clam and while upset that we wouldn't stop to play on the playground equipment, he still left somewhat content.

All in all...it was a good day. Everyone is tired but seemingly happy.

Amazing

2010-06-17T16:23:00.001-05:00

Thanks to some more generous donations we are now at 94%! Thank you!!

We're at 88%!

2010-06-16T16:32:00.001-05:00

Well, its almost 3 weeks and we'll be on our way... we have raised 88% of our goal and the donations are still coming in. Thank you to all who have donated but I'd like to give a special Thank-you to the Team Members at the State Bank of Fargo! You are AMAZING!
I have learned so much through this ordeal as I've learned to eat some humble pie and depend on others for help. It has been an amazing (but hard) lesson and one that I've honestly taken to heart.

4 weeks and Counting!

2010-06-09T14:09:00.001-05:00

Just 4 weeks from Friday and we'll be on our way to Dusseldorf. We've already connected with one family that will also be there the same time we will. They are from England & have a 10 yr old son who will be going through the treatment as well. Each story is unique in itself and I'm truly drawing encouragement off of each one of them.
Yesterday was a milestone for us as we ordered Ethan his first chair. He was rather upset about it but he did okay. He made it very clear to everyone in the room though that he didn't need one and that he could walk just fine. Needless to say, he did seem somewhat interested & excited when he found out he could "drive" it and even asked if he could run over his twin sister's toes. Those boys...they are never dull. :-)

We're almost at 50%!

2010-06-03T19:36:00.000-05:00

Just wanted to give a big "SHOUT OUT" to everyone who have donated in one way or another... We are at 47% and going forward.

If you know of anyone who can help, please feel free to send this site on.

Just a note:

2010-05-30T11:20:00.005-05:00

I'm new at all this technology stuff (aka blogging) so bear with me as I make some changes. This week we encountered new opportunties with 2 TV news interviews. I've posted the link to one of them, along with some other links.
Its hard to believe we leave Fargo in 5 weeks; 5 days from today... WOW! Fundraising is still ongoing and we are making progress...We are still in need of help so please if you can help in any way please visit our GiveForward site.

Donations are also being accepted at all Wells Fargo Bank locations --Ethan Radtke benefit donation fund account. Donations can also be made to our paypal acct: Ethanwalks@gmail.com.

That's all for now. Hope everyone has a wonderful Memorial Day weekend.

OUR NEWS STORY

2010-05-25T20:13:00.002-05:00

5/25: Tomorrow our story will be airing on KVLY 11 & KVRR FOX... can't wait to see what the stories will look like!

Going to Dusseldorf

2010-05-10T18:34:00.000-05:00

We've been approved and we are going to Germany. Mixed emotions right now, scared, excited, disbelief... So much to do, so little time. Our 1st appt is July 12th, marrow extraction the 13th and transplant on the 15th (our day of miracles)... More to come!

Ethan's Story & Wish...

2010-05-01T17:58:00.000-05:00

Ethan Deserves to Walk -Our Story
On a day prior to this past Christmas, Ethan was being picked on by his typical brother and sister. In an attempt to resolve the matter, his Mom asked him what he wanted from Santa for Christmas…After thinking about it for a minute he replied with big eyes… “Mom, I want Thomas the Engine Trains and…new legs that work!”

If you couldn’t walk, and you were told that you never could, would you be sad? If it was your child would you do anything at all to give him the chance to experience life like his brother and sister? If it was just a possibility don’t you still owe it to your son to move heaven and earth for the opportunity to allow him to walk and run or even ride a bike?

Read on to hear Ethan’s story and to find out how you may be able to help.

Family Background – How Ethan got here
The youngest of 3 children, Connor (7) and twin sister (Ashlee), Ethan Radtke is an amazing five year old with a HUGE smile and a mischievous look.
Due to multiple health complications experienced by his mother Lisa, Ethan and his twin sister were born at 33 weeks. While his sister was fine, Ethan was immediately placed on a ventilator due to undeveloped lungs and remained on one for approx 96 hours. No additional concerns were immediately identified and after 3 weeks in the NICU he was released. Throughout his first year, Ethan did not meet his development and some physical goals and at 18 months, Ethan was referred to a Neurologist where a Cat Scan (CT) was done. While the CT showed a perfectly normal brain, however based upon symptoms, Ethan was diagnosed with (CP) Cerebral Palsy-Spastic Diplegia. Since the diagnosis, therapies (Speech, Occupational & Physical therapies) have ensued multiple times a week to help with Ethan’s tone and to develop much needed skills. In addition, torturous injections of Botox & Phenol have been given as well; these worked at first but as time progressed, beneficial outcomes were no longer noticed.
Ethan has two amazing parents, Lisa and James, who have earnestly become advocates for their family. Learning the ropes did not come easy at first, as it was soon learned that services and benefits available are slightly different family to family and are based upon the child’s need; disability level and last but not least, the families income basis. Needless to say, they jumped right in to learn all they could about CP and what Ethan needed.
Today, the CP has started to affect Ethan even more negatively. Now that his tone has become much more unmanageable he is slowing down in movement and as a result, he is growing quickly (he gained 3 lbs in less than 1 month). In addition, as he grows and develops mentally he knows that he isn’t the same as his brother and sister which he has vocally shared that he wants “Legs that work”. His goal at this point is to sit on his sister and “get her! He is after all a boy who loves to torment his sister in every sense of the word, if only he could get a hold of her.

Pain has elevated partially due to his growth increase and partially to the overwhelming tone. Upon a recent evaluation at Gillette Children’s Hospital in St. Paul, MN, both of Ethan’s femurs have developed bone twists. Twists develop as growth of the bones occurs however due to the high tone, the muscles cannot stretch with the bones, therefore creating a rubber band effect and twisting the bones. As a result, the use of his crutches and walker has become extremely difficult. With therapies having minimal impact and not seeing needed impact with Botox or oral muscle relaxers such as Baclofan, Lisa and James decided to identify an outside and permanent option to help reduce Ethan’s tone and get him on the road to “new legs that work”.

ADULT (non-embryonic ) Stem Cell treatment: Only done outside of North America, this procedure entails a stem cell collection from Ethan’s hip bone. Cells are then sorted in a laboratory and are reintroduced via a lumbar puncture. Success rates with CP patients have been remarkable and they continue to see children thrive without risky surgeries. While the success rate is high, there are no definite promises but they have witnessed friends of theirs, also brave parents of a child with CP, taking their child to Germany whereby the results were a walking child in one week after treatment along with better use of his hands and attempts to speak. . Unfortunately since the procedure is not recognized in North America, the stem cell treatment is done by a private institution resulting in the denial of any insurance coverage of this $20,000 treatment (this cost includes treatment, hotel & transportation).

Time to help
Together, Lisa and James keep working towards solutions to give Ethan what he needs to overcome his disability; whether it’s purchasing or modifying special needs equipment or fighting for coverage through the insurance company, they will not give up. Ethan too continues to be as strong as his parents as while he’s learned that using crutches and a walker is a tremendous strain, he’s still adamant when he states “No! I do not need a wheel chair! I can walk Just FINE!!

Needless to say, while the Radtke family has been working towards solutions to assist Ethan, funds are needed to make the possibility to walk a reality.

This donation site has been created at the request of friends and family. Please feel free to utilize this information to add or join the “Ethan Deserves to Walk” group. All dollars earned will go directly to these possibilities.

Thank you all for your support and helping a little boy’s dream come true!