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 ...