Ethan's story

all by myself...

almost 3 months after the casts came off...

Well, we had our 1st "real" follow up/progress dr's appt in Minneapolis yesterday. Everything went well and Ethan showed his stuff off to the doctor and nurses. We saw lots of smiles from everyone and the doctor was impressed with where Ethan was at. There was still some concern about Ethan's crouch and bend but...as long as we can maintain and things don't get worse, we'll be okay. We go back in January and we'll see how he's doing whereby at that time we'll discuss new braces (hopefully shorter) and other ways to keep his hamstrings stretching with his growth. Outside of the dr's appt, we have seen confidence and happiness exuding from Ethan. He has walked up and down 25 steps by simply holding the railing vs. sliding down and crawling up. He has attempted to take independent steps and keeps trying to do more and more. For the most part, Ethan's walking full time with crutches now and unless he's feeling tired (or a tad bit lazy), he opts to walk. School is going well for all the kids. They have started playing Soccer with the HOPE Inc group and they are all gearing up for Halloween with costumes already purchased and ready to go. The boys are loving football this year and ironically Ethan is drawn to Tim Tebow and religiously cheers for the Jets...and now that his legs are healed up he's getting pretty good at Tebowing too. Connor is still hung up on his MN Vikings... and me...well, despite the ridicule, I'll forever be dedicated to my Cowboys, James just cheers for whoever and Ash--well she opts to not cheer for anyone as to a 7 yr old girl Football is dumb...(her words-not mine) Ahhh...life is fun... well to wrap it up...Our challenges are far from over but they are fewer now than they were 2 years ago. We are truly thankful for all of our blessings and thank you all for your continued thoughts and prayers. Until later, Lisa

Back to school

Well it's been a little bit since I've updated our site...I'm not sure where our summer went but I do know this...it went unbelievably fast! School seemed to have ended last week only to start up this week...wowzers! All 3 kiddos went back to school yesterday, ironically all of them were pretty excited. Ethan continues to knock everyone's socks off...while he uses his wheelchair for longer distances, he is also using his crutches to get around a good portion of the time. In therapy, he's been walking on a treadmill,going up and down steps, standing independently and a few days ago, he took one step on his own...the pride and smile that emitted from his face was priceless... Progress is a wonderful thing.

Ethan walking with crutches for the 1st time since surgery in May

Next steps and a crown...

Well today we finally get the casts off! Ethan is excited to be free of them but a tad apprehensive about the removal as the saw always scares the witts out of him. I'm excited too as once they are off, my smelly boy is getting a serious bath!
In other news, we got a call earlier this week asking us if Ethan would be interested in being the 2012 prince for the ND Shriner's Bowl in July. Ethan giggled with delight and said yes but with 2 stipulations... 1) that he doesn't have to hold the princess's hand 2) he doesn't have to talk... Give him a crown and immediately he gets demanding...watch out Prince Harry and William...you've got competition!

Let the Fun begin

Physical therapy Tuesday and Friday for the 1st time since surgery...Ethan was a little apprehensive but he did fabulous and by the time PT left on Tuesday, he had rolled over and had tummy crawled a little distance...of course he grumbled about it hurting but he did it with a smile too. Then he did it. For most, it wouldn't be a big deal but for me it was one of those 1st moments for mom...after rolling to his back...in the middle of the floor...without ANY help or support, Ethan sat up-legs extended-hands in his lap... So we fast forward to Thursday...he did some more rolling, tummy crawling but then...we went ups level...4 point crawling stance and hang on everyone...we stood at the couch...only for a moment but he was vertical and with oh so straight legs and so tall. Again he fussed some but all with a big grin so I have a feeling I'm being worked for some sympathy...
Overall we are doing well and very excited about our next steps... Well I better wrap up...
Until later,
Lisa

5 weeks later

Our appointment on Monday went ...I was happy with the report from our doctor...Ethan however was not. We had lots of tears, screams and a bucket full of frustration from Ethan as while they took off his casts...it was only temporary while they took X-rays, did molds for new AFOS (braces) and examination ...Ethan wasn't impressed with the fact that they had to put new casts back on...the good news though is that these are only on for 3 weeks and he can do some weight bearing activities. Overall though, he is healing very well and there were no concerns. By the time we left he stood for a moment in a walker...success.

Until later,
Lisa

3 weeks later

Ethan is doing great! He's finally sleeping through the night and is back to school full time. We go back on June 4th to Mnpls and they will take X-rays and will remove the bar and immobilizes. They'll also put walking casts on. In the meantime however, Ethan has learned a new trick and can grab his toes while sitting straight legged...he's also amazed by his knees as he's never really had much of a kneecap... It's been hard but rewarding at the same time and we are excited about what's to come...

Until later,

Lisa

When can I?

I heard the words this a.m. ...when can I? I love those words as to me it means healing and motivation. Ethan already wants to go back to school monday and was a tad bit miffed at the fact that I told him no...on the flip side I'm a little bit excited to see him go to school as he seems to be calling on mommy quite a bit making a nap or the ability to get much work done somewhat difficult at times...nevertheless his brother & sister are taking great care of him...
Overall, we are managing despite my many tears, stresses and concerns...

Until later,
Lisa

We're home...

well, we were discharged a day early and actually got home last night. Ethan is doing okay...still achy and in some pain at times but definitely getting better each day. He is pretty much refusing all "pain medications" and in turn will only take tylenol or Advil which makes it hard. He outright has told me the others make him feel icky...and I have no doubt about that as my little boy has definitely disappeared in a sea of side affects. Nevertheless, he's hanging in there. Each day will get better...and before you know it, days will turn into weeks and weeks into a month--which is when we go back. At our June 4th appt, we'll get the immobilizer bar off as well as the immobilizers will be removed (during the day at least) and they will put some walking casts on which will be good as well... I cannot wait and know that 4 weeks will fly by. :-) Outside of that, that's about it. I'll post more later! Until later, Lisa

The day after surgery

Ethan is doing ok...not bad but not great. He's in a considerable amount of pain as to be expected but is also struggling with painful muscle spasms. The staff here has been top notch and we cannot complain at all. Right now the plan is to remove the epidermal tomorrow and to give him pain meds via the IV alone. In addition, he'll likely get casts on tomorrow as well as a removable stabilizing bar. He's making progress and the bumps we're seeing are typical...nevertheless it's never fun to see your little one in pain of any kind. Right now our predicted discharge date is Saturday.

To my 1st grade class--the day after

Today has been hard. My muscles keep wanting to move and twitch and they hurt a lot. The nurses give me medicines that help make me feel better but they also make me sleepy. Mommy keeps saying sleep is what I need so I guess I'll listen for today and take lots of naps.
The picture is what my legs look like right now...

Your friend , Ethan

To my 1st grade class...I'm okay!

Well surgery is over and I'm feeling okay. I still have lots of machines hooked up to me which give me medicines and make sure my body is working okay. I'm also in a very special care area which take extra special care of kids like me after surgery. My legs have special casts on them right now but in a couple of days I'll get different casts and I'll get to pick the color of the casts! Well I better go to bed but I wanted to say I'm okay. I'll leave another message tomorrow. Your friend, Ethan

Surgery update

Ethan's surgery is over. The surgeon said he did very well overall. Nevertheless as to be expected...he is in ALOT of pain and is in the ICU. Hoping the pain meds help and that the anesthesia wears off soon.

To my 1st grade class...luv ethan

I'm doing okay here...they have lots of fun stuff to do here at the hospital and the nurses are really nice too. I have my own TV and a remote that can do lots of cool things like make my bed move, turn the lights on/off, call a nurse and turns on/off the TV. I'm a little scared about surgery but excited too...gotta go as the doctors are here to take me to surgery but I'll send another note later. Miss you all!

Your friend--Ethan

Tomorrow

Tomorrow is the day...surgery at 9:30 a.m. In the meantime it's 11 pm and the tears ate streaming down my face as I attempt to make this update. Why? Partially out of sheer terror as a parents 1st instinct is to protect your child from pain ...I'm deliberately subjecting him to pain & a lot of it...if he was in a lot of pain I might not be feeling as bad but right now he's feeling great which I think is part of my issue...the other underlying reason is likely relief as this is what we've been waiting for... A chance for our son to walk and stand on his own.i will pass updates as I can tomorrow. Until later, Lisa

The day is almost here...

Well the big day is almost here...Ethan is so very excited however I am scared to death. Not sure I know what I'm scared of as the doctors at the Shriners are good drs...after all this is the surgery that we've dreamed of and worked so hard for. Maybe its taking away all that Ethan has worked for as of late, despite knowing that sometimes you have to take things away to give your child more. Maybe it's concern of the general unknown...who knows...but nevertheless we move on and our adventure continues. So tomorrow we adventure on to our Pre -op appt and then off to some "fun"...aka Como Park. Surgery is currently scheduled for 7:30 a.m. Tuesday so I will update the blog as we know and hear more over the next few days. Your prayers for strength, wisdom and peace are much appreciated. Until later, Lisa

Ethan walking

And so a New Chapter Begins...

Its been a little while since I've passed along an update so I'm sneaking away from the chaos for a few minutes to pass along our latest news...

WOW...what a few months it has been. Our winter has been somewhat odd in nature with having very very little snow (only a few inches) and balmy 30-40 degree temps so we have been pleasantly enjoying the season (of course I still have been counting the weeks til Spring-that won't change). Other than that, its been business as usual with school, work and the various dr's appts.

Speaking of dr's appts, with changing insurance at work and a significant rise in our Out of Pocket costs, we were forced to explore new opportunities in health care resources for Ethan...And I am so glad we did. In February, we again made the enduring trek to Minneapolis (approx 4 hours or so from Fargo); this time bringing the ENTIRE crew for one of Ethan's dr's appts only this time, we went to the Twin Cities Shriners Hospital for Children. What a blessing they proved to be. The entire facility, while small in nature, was huge in heart and soul. They listened to us and while the orthopedic surgeon somewhat agreed with what we have been previously told by our previous Minneapolis physicians, he was open to giving us a choice... orthopedic surgery, partial orthopedic surgery followed by tone management, or tone mgmt followed by ortho surgery. It was up to us and without judgement. Of course we already knew what we needed to do; orthopedic surgery however they wanted us to visit with the neurosurgeon the next day. We had been told she was a somewhat "forward" lady who spoke her mind and didn't take offense to what people returned as a response. On top of it, she was a veteran dr. of approx 35 yrs from the former facility that we had a "not so pleasant" experience with a few months prior. Oh lordy, what was she going to say or do when she read through the files... we still stood our ground though and were intent on surgery without the need for a rhizotomy (surgery where they snip the nerves in ones spine to reduce spacticity). We went the next day, nerves full force. After much waiting, she finally came in... Here we go... She looked at my husband and myself and started by saying... "I have to commend you both for doing EVERYTHING you could have possibly done to help your son"... She then went over a brief history and then asked for Ethan to hop up on the table... after some basic twisting/turning/bending and cruntching... she yelled for a nurse/PT/OT to come... after some quick conversation she determined very openingly that Ethan's tone has pretty much non evident and she wasn't sure what the other's had looked at as she did NOT see where this so called emerging "tone" was. After some discussion with the ortho surgeon, she came back in and stated that Ethan was NOT a candidate for a rhizotomy now nor likely ever...in addition she didn't he would likely even need a baclofen pump. WOW! WOW!! WOW!!! Our jaws pretty much hit the ground. Then for the kicker... "I'm not sure how it all works but those stem cells obviously were successful"... Finally someone took the time to listen and look outside the box. THANK YOU!
Our surgery is now scheduled for May 1st and will include derotations of both Tibia and Femur bones in both legs; hamstring lengthenings along with a couple of other lengthenings and a tendon transfer. The surgery itself will be approx 6 hrs and will require 2 surgeons and a team. We are very excited...especially Ethan as he sees this as a way to finally get on his feet once and for all.
He currently is taking up to 20 steps at a time all by himself so the prospect of him walking full time and all on his own in the near future is sooo very promising. Those New Legs that Work are well on their way!

So that is the new update...I have been absorbing as much as I can but I honestly think as of late "Mommy's Supermom Cape" has developed a gaping hole in it. In turn, prayers would be most appreciated to keep my energy, happiness and hopes & dreams alive as we go through this next chapter of our story.

A continued thanks to you all for following our story & be sure to stay tuned for our next chapter--it can only get better! :-)

Until later...

Lisa