New Braces

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

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

Follow up story

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

The casts are off!

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

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

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

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...

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

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..

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

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...

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!

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

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

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

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 !

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

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

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

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

The treatment- Our day of miracles

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

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

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

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

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!

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

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

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

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...

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

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

We're at 88%!

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!

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%!

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:

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

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

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...

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!