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