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!