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.
Wednesday, July 28, 2010
Tuesday, July 20, 2010
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
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
Saturday, July 17, 2010
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 ...
-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
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
Friday, July 16, 2010
Thursday, July 15, 2010
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
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
Wednesday, July 14, 2010
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
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
Subscribe to:
Posts (Atom)