Happy Easter Everyone!!

A couple of years ago.  Who says you can't balance an egg unless it is at noon on the solstice!

We are having a nice, quite Easter.  Aunt Julie Ka-Boolie left earlier after sharing a wonderful brunch around Donovan's Table.  Now it's cooking dinner and basketball as the kids play games.

We hope all you you had a blessed and wonderful day!

Easter Egg hunt at the Equest Center.  Great spring day and chance to get outside!

The letter "V"

Wow it's Friday and we haven't had a new post since Monday!  You know what they say,,, No News is Good News!  Donovan is doing great and we continue to adjust.  We are on Spring Break and hanging out and filling the day.  We are taking care of Victor our neighbors dog, the sun has been shining here and it is feeling like spring.  Bridget's sister Julie is here for an encore presentation so we are getting out for an hour to have a drink.

Bridget has been a trooper.  She has only been away from Donovan a couple of times since the surgery, for very short periods.  We've been blessed with a incredible Mom, Wife and best friend.  As they say,,,  I married Up! :)

Look Mom,,, I'm the letter V!

Face Plant - Donovan's first trip to see the Doc

Carl had a busy weekend and when it was time to get ready for school, he ate breakfast and crashed on our chair.  This picture reflects how we all feel some mornings as we juggle everything.

Very busy weekend and not enough sleep....

Donovan had his first visit with the Doctor since the surgery today.  Bridget, with good friend Amy Vancil, got Donovan loaded up in the truck and went to go see the Doc (after taking Carl to school.  I had to head out of town for work).

Donovan's recovering is going great!  In fact, everything looked so good, he can skip his next appointment.  I'm too tired to get into details, Bridget will do that tomorrow, but we wanted to let you all know that.

good night...... zzzzzzzzzzzzzzzzzzzzzzz

What inspires us...Kevin, our Rock Star

Both Steve and I have received many gracious "how are you doing" inquires.  Truly, when you're blessed with a kiddo with needs and they have a personality as Donovan has he leads the way.  And if he's going to get through this with great attitude and determination, then how can we do anything different.

With Kevin when he had a similar surgery as Donovan in the 80s
Thanks for sharing the picture, Sean!

After cheering Kevin in at the MS150 ride in 2007

There is another person so many of us have been blessed with and taught me the same; my cousin Kevin.  Kevin was also born with Cerebral Palsy but was more involved than Donovan.  His spasticity left him with limited use of the right side of his body, yet he defied just about every limitation predicted for him.  His parents were advised to find an institution for him to live in, which they didn't listen to it.  They were told it wasn't likely he would walk; he walked for most of his life. 



I bet if the doctors that diagnosed him in the late 50s ever entertained the idea of bike riding, they would have said no way.  They didn't know Kevin's spirit.  He showed everyone that he had no limits and did it with a smile, inspiring everyone who met him, and becoming a very accomplished biker and hero to many! 

I grew up knowing Kevin as my Rock Star.  Running into him at bike rides unexpectedly was the highlight of the day!  Cheering him in at the end of a ride always made me cry out of pride in him.  As an adult, he shared his wisdom with me on what life would be like for Donovan, what his spasticity feels like, how not to enable him but rather teach him drive and determination.  Donovan's made that really easy on us... he has been blessed as Kevin was!

Kevin became our angel in 2010 and I miss him!  I am so grateful for having had him here to teach me about his spirit and help me to understand how to be a better parent for Donovan.  I really urge you to look at the links below to understand what an amazing person he was and invite you to share them with anyone you know in need of encouragement or inspiration.

Kevin's family started a foundation in his honor to support the use of biking as a source of freedom for people with differences. Make sure you look at the media link within it to hear about his life of amazing accomplishments; carrying the Olympic torch, being called a hero by the first American to win the Tour de France, riding his bike from L.A. to D.C. while peddling with one leg, and so much more!  The Kevin Degen Open Road Foundation.

For any parent of a child with special needs (or any needs for that matter), Kevin's eulogy by his friends and family has been a source of inspiration for me.  Listen to the portion where his sister, Colleen tells of how his parents encouraged him to be strong and independent.  Kevin's Memorial Service

When my sister Julie decided to celebrate her 50th birthday by jumping out of a plane, none of us six siblings, including me, had the courage to join in but Kevin did!  He trusted in himself and the staff to lift him out of his wheelchair, get into the jump seat, and go.  Kevin's jump.

Again, we were amazingly blessed with Kevin's spirit and are now with Donovan's!  The next time you see an indivudual with differences, don't feel sorry for what they don't have, look at them with the same awe as you do for others you admire; they are likely accomplishing amazing things against the odds.

-Bridget

Donovan.Lassig@gmail.com

Saturday morning and all is well.  Donovan is getting stronger each day and is using his trapeze to lift himself more and more.  Some of you have mentioned wanting to leave comments and not being able to.  Not sure why that is but if you would like to send Donovan a note, please send it to donovan.lassig@gmail.com if the comments aren't working for you.  He can read your emails on his iPod! :)  Maybe we'll even convince him to reply to your emails.

Next he'll want a twitter account.......

Your cards mean a great deal!

This week, Donovan received two stacks of cards... one from classmates and another from buddies from his Wolf Den.  These mean a ton to him!  Many thanks to Sra.'s Tamayo and Paulson and his amigos de segundo grado!  And, to his awesome leaders, Mrs. Burns and Mrs. Dew and the fabulous Wolves! 

Days End - this and that

Bridget and Emma gave me their "iDevices" to off load pictures so I thought I'd share them.  Just moments in time over the past 5 days.  Can't believe it has been a week already.  His favorite thing to do (other than when mom and dad slave over him) is to stretch by rolling on a side and pulling on the bed rails, while mom and dad roll his legs.  Always good for a big sigh and a "Ahhhh,,, that feels good..."

Doing my daily pull ups to strengthen the core! One, two, three...

Playing flashlight tag with Emma, with the "finger flashlights" attached to my toes!  Thanks Daniel for the flashlights!

Love my new Angry Birds Blanket from Nana and Papa!

Wiiiiiiiiiiiiii! Love it!

Day 7 - All's well...

Donovan had a busy day.  First there was a visit from his school principal, Mr. Hoogerland, who came by to deliver another present (everyone is spoiling D) and play a little bay blade.  It was very kind of him to work us into his busy schedule.  We love our school!

Then Donovan had his second PT session and got his morning work out in.  Finally, Miss Holly and Miss Annah, from his school stopped by to deliver his first in home school lessons.  All went well and D was very happy to see everyone.  Big smiles all around!

Donovan continues to get stronger every day and is now moving himself on the bed and in his wheel chair more and more each day.  We built a table for him so he has a work surface so he can play games and do his home work in his chair.  He likes it very much.  Now he wants drawers and secret compartments built in!

All and all, life is good.  Emma and Carl never cease to amaze us how compassionate they can be one minute to help D, than the typical brother and sister the next!  Balanced karma I guess.... 

As always, blessed with all the help our friends and family provide each day.  Spiritually, physically and emotionally....  very humbled by it and thankful........

How to Stay in Touch When You're at Home in Bed

On Monday, Donovan got the chance to see his classmates for the first time since the surgery through Skype.  It was great to see him so happy and to see the kids eager to see him.

Many thanks to Sra. Tamayo and Mr. Hoogerland for making Skype work!

A note from From Donovan to his friends (with a little help from Emma)

Gracias por todos  los cartas y tambien los globos me gusto tanto y finalmente los posteres gracias especialmente Jackson, Evan, Braydon, Nick y Makenzie.  Go Pack Go!

                                                                          --Donovan  
                                                                                                                                                                                   
                                                                                                                                                

Things I am Grateful for Part 1

I am sooo grateful for my family....
My sister Julie who came the night before the surgury and took over with Emma and Carl for the rest of the week and was there for me when I really needed her!

I love you Aunt Julie Kabooli

My sister Sarah and her family who treated us to an amazing mid-winter break; Donovan's last big gig before the surgery.  Uncle Eric who made it his mission that Donovan get to enjoy skiing with his cousins and siblings and soooo succeeded!  And then came this weekend to be our personal physical therapist, cook, and curtain maker, with a broken elbow herself! 

Uncle Eric, you made this smile happen!

The Dinner Thank you...

We had a good day punctuated by a wonderful lasagna with all the fixen's from the Vancil family.  Amy and Kathryn delivered Emma (from school) and dinner.  We have many people to thank and we will do so in time, but just thought I'd post a picture of the "D" dining hall with dinner prepared.  It is not a great picture of everyone, but at least it shows a happy well fed family.  Thank you Amy!

The daily grind begins...

We had another great night and D is doing fine.  He continues to amaze us as he just handles all the little things that have to be done.  We are down to over the counter ibuprofen for drugs (yeh!) and he isn't complaining of any pain.  Just miraculous!  We have our first home PT this afternoon so we'll see how that goes and we let him know home school starts tomorrow!

Buster, who rarely hangs out upstairs, is now by D's beside being the faithful guard dog he is.  Although as soon as Buster hears anyone in the kitchen, he jumps to that local... Dogs will be dogs and someone has to clean up the floor...

So we continue to work out the little things to facilitate D's learning, entertainment and /or personal needs.  All and all, life is good!

Watching a little Mario Brothers while Buster is on Guard

It was a good day...

"Dad, thank you for taking care of me"....

They say a picture is worth a thousand words and suffice to say we had a fun day and Donovan is doing well!  So I'll let the pictures of the day will tell you the rest of the story......

The "E" Clan, Aunt Julie, Emma and Carl

Great day with Cousin Ricky!

First night at home...

Donovan had a good night!  He slept well, woke up enough to get his meds at 5am and go back to sleep.  He got up at 9am, watched a little tv and ate a good breakfast.  He is been playing with the "E Bros" (cousin's Eric, Elliot and Emmet), Carl, and Emma, with remote control cars while he is in the wheel chair.  When we got him in the chair he told me "Dad, I like being pushed around in the wheel chair".  He also told me this morning as he finished up breakfast "Dad, I like being lazy all day"!

It is amazing how well he is handling all of this.  Rarely complains.  Just does what we ask of him with meds, shifting him in his bed every two hours, and all the other items with being bed and wheel chair bound.  Everytime we get him situated he puts his hands behind his head and says "AAAHHH, that feels good"!

Yesterday, after we got him settled in and I got the Wii working with the TV he said to us, "My life is very good"!

Imagine that after this surgery....  His is our gift.....

Home is where you hang your hat....

We are home.  Donovan is settled in the "D Cave" (formally the Wii Cave, formally the Man Cave). 

A huge thank you to our great friend and Donovan's Chauffeur, Mr. Bill.  Took time to drive his big truck with the huge bench seat in the back and carried our treasure home.  Thanks Bill!

 

Bill's Bait and Chauffeur Service

So the day started with the normal getting ready to move home and a big surprise from the Johnson's cousins to escort Donovan home.  Thanks Ricky, Elliot and Emmit (and Aunt Sarah)!

Wii Minds at work...

Finally we headed out to our ride home.  It was a little tricky but with the help of Nurse Josh, we got Donovan in his harness and strapped in for the ride.

Thumbs up and ready to ride.

It was a smooth ride home in the old ford truck and Donovan even took a short nap!  When he woke up he was ready to be home!

Refreshed after the nap!

Going home!

Discharge papers written and we are going home!!

Steve

Excuse my thumbs. Sent from my PDA.

616.292.0000 cell

Final Words for the Night

Donovan feel asleep tonight in the middle of repeating... "I want to stay here... I want to stay here... I want to..."  A sure sign he's feeling good enough to go home as he's recognizing how awesome the care is here.  Many, many thanks to all the people that have taken such good care of our Donovan!

Amber and Schyler removing Donovan's IV

The rewards of good sleep and a long day...

After a hard day of Wii playing and being Dad and Mom's teaching tool today, Donovan finally agreed to an excursion.  Made it just in time to get a treat from the Balk Cafe Ice Cream counter.

And a few rounds of playing at the interactive wall in the lobby.

Life is good with a Wii and your friends...

Just before I headed home tonight, Donovan agreed I could capture Carl, Iggy (my name) and him playing a little Wii.  The smiles say everything!

Mario Rules!!

Just the Wii dad, Just the Wii.  That about sums up Donovan's desires today, that and Pizza, pepperoni pizza dad.  Lunch and dinner (sausage for breakfast, but he'd eat pizza if we let him).  To be fair, the pizza place here at the hospital is very good.

Donovan spent the day off the IV, no morphine since 3am, and if all goes well tonight,,,, home tomorrow!!  Bridget and I practiced all day moving him around the bed, in and out of the wheel chair and generally taking care of him.  He has not complained about pain as we have moved him around.  He took a long nap today in preparation of a fun night with Emma and Carl.  Yup, more Wii, only with his favorite play mate on the Wii.

Mom and dad are fine.  Dad went home last night.  Mom stayed with D and watched him sleep from 8pm to 9am, with only a 4am medical check to interrupt a great night sleep. No pictures today.  Donovan didn't agree to any today.

So we pray all goes well tonight so we can go home tomorrow.  Our great friend Bill, is bringing his new truck with 4 doors and a big bench seat in the back, to chauffeur Donovan.  Donovan's legs have to stay straight with knee braces holding them in place, so we need a long bench seat to strap him in.  We have a special harness to put him in so as he sits, with legs across the seat, we can buckle him into the seat belts.  In fact, Donovan is very excited about using his harness and being able to "relax" while riding.

I know Donovan will want pictures of that!

A long and active day

The day after surgery is no fun!...  If Donovan could think straight enough to summarize his day, I'm sure he'd be saying this.  The good news is that there was no sign of a fever!  The amazing news is that he did get out of bed today, twice!  Even did a lap out in the halls to snag the available Wii (all in one unit on wheels) which was a Godsend as the distraction was very much needed today.  Getting out of bed means three people transferring him to a reclined wheelchair.  It is so amazing to me... less than 24 hours after having two major bones cut, repositioned and put back together, muscles moved, ligaments lengthened and he got out of bed!

The harder parts of today were the pain he is dealing with and the frustrations he has.  The pain is not apparent until he is moved (repositioning every two hours... even at night... is critical to keeping him from getting sores).  The frustration is over not being able to stand or move as he's used to and a few bothersome itches where we can't get to them.  But Donovan is this amazing child who even when he's uncomfortable will express his feelings clearly and then move on to the next thing.  He also just simply needs some good sleep and tonight it solidly started by 8:30!  Pray it continues until at least 8:30 in the morn!

Just Chillin to Music

So first thing this morning Donovan decided he wanted to listen to some music.  The first song he played was a religious song that he likes and reminds Bridget of her Mom and Dad.  The 2nd song was rap music!  Diversity is great!

Chllin' to some music

1st Night - Catching up!

Last night Emma, Carl and Aunt Julie visited Donovan in the hospital and brightened his day.  Donovan was still pretty out of it but both Emma and Carl did what they could to entertain and take care of him.  He was groggy most of the night but came around and made very good progress.  We were up late but Donovan achieved a couple of important milestones, which continued today.  He is eating, drinking and getting better by the minute.  We had him in a wheel chair today and took a small trip around the hospital floor.  So all is well and he wants to go home now. :)

Donovan catching up on Mine Craft after a hard day and waking up.

Carl and Mom trying to wake Donovan to say hello and take fluids.

Just plain tuckered out with my new friend the iguana.  Thanks Dr. McKenzie!

That's a wrap! For now....

We are in Donovan's room and he is sleeping and snoring away.  That is a very good thing as it is a strong indication he is in no pain and comfortable.  Our meeting with Dr. Forness went very well.  The surgery went according to plan (see pics of his x-ray below of his hip).  We had to wake him up in recovery before coming to his room and the only thing he said was "can we go home now"! and he went right back to sleep.

Can't say enough about the care and communication we have received today at the Children's Hospital before, during and after the surgery.  We actually ran into several people we know from multiple area's of our lives in the surgical waiting area and it included:  Bridget's old boss from Steelcase, a fellow PFAC member, an associate from Steve's work, and several staff (like 3 or 4) from spectrum who work with Bridget on the PFAC.

So now we wait for D to fully wake up and start the long recovery process.  The Nurses said it is likely the surgical drugs will wear off at 4am tomorrow, however, they have a good regiment of pain medicines on the plan.

Sleeping comfortably in recovery

The right hip / femur - pin, plate and screws.

This just in....... They are finishing up!!!

Donovan's Surgery is done!  We are pumped!  (got the fist bump from my boss when she got off the phone with D's nurse).  They are just wrapping up and we will be talking to the surgeon in 20 minutes or so! 

2013 Derby

So once again I asked Donovan "what do you want your derby car to look like"? Donovan reply "A rocket Dad" and he proceeded to draw me a picture.  Now this was after several other options were considered.  Another Angry bird tucan (like the one we did last year and he won the design award)

Angry Bird - Donovan Designed and Directed

but in the end he chose a rocket.  We had one day (due to family and dad's schedule) to get the body done and then Donovan and Emma painted the car.  Donovan won 2nd place for the whole Pack (40 cars) and one of his best buddies Wyatt won 3rd place.  This race was just two weeks ago!  Here is a pictures!
 

Proud Dad and brother

Great Troop Leadership

Donovan and Buddy Wyatt with the Hardware!

Thought you'd like to see what the hospital looks like as you enter from the parking ramp tunnel and enter the lobby.  The last picture (was threatened with my life if I didn't remove it, so i did) is Donovan's fearless researcher, who knows no bounds of driving everyone involved with Donovan's Surgery (and all our kids life) to answer every detailed question that needs to be answered.  God blessed us with her and has made this a simple process for all of us.

The Bridge over Michigan Avenue from Ramp

Leaving Bridge Entering Hospital - Turn left to Lobby!

Looking at Lobby from the Bridge Entrance - Bubble Wall on Right

11:30am Update - All's Very Well

This is Dad, also known as Donovan's Sherpa, and all is going very well according to D's Nurse.  They have completed stage one of the surgery (that's what i call it as I'm not smart enough to disseminate abductor vs. being abducted) and have started on the first (right) hip.  They have a warming blanket on him to regulate his body temp. The Nurse will call again around 12:30.

Here is a picture as they headed out to surgery this morning..... That is Bridget on the left in her stylish outfit provided....

 

 

The waiting begins

Its 9:20 and we've left our kisses on Donovan's check and are now in the waiting room.

This surgery seems to be easier on Steve and me than the last but not true for Donovan. He's been so brave, asking us questions about his fears and expressing concerns and then going back to whatever we have distracting him for the moment.

This team taking care of Donovan is excellent! They had medicine in him immediately to calm nerves and put him at ease. Dr. Forness again walked through all the details and the reason for each of the procedures. They will be de-rotating both of his femurs, lengthening his adductor muscle and one hamstring and altering one of the quad muscles.

Even with his hesitations about today, you can see Donovan was still our happy guy this morning.



Received a call at 9:30 saying the first incision has been made. The estimates are that it will be 6 hours from this time, maybe more.

Just got an update from the anesthesiologist, D's classmates Dad! It made him very happy to hear that his friend's Dad was going to be one of his doctors. Donovan is doing well, with his heart-rate low; a good sign that he is feeling no pain. They are very conscientious to take steps towards Donovan's comfort, even with him being out. We are extremely grateful for this hospital and the care they take!

Thank you all for the prayers and wishes! We have been head down in the details of preparing for today and the recovery but please know every one of your gestures and notes have touched us deeply. We are feeling the strength of your prayers.

Femoral Derotational Osteotomy...

At first I thought I'd call this posting the Next Big Journey for Donovan but the reality is he's been on a non-stop journey since our last post four years ago. The majority of the ride has been through the educational system, more so than the medical system. Donovan is now in second grade and is reading, writing and speaking in Spanish and English. This despite the fact that we now understand he is doing all this with Dyslexia in addition to the Cerebral Palsy. It hasn't been without work but he's the same Donovan after all these challenges as before; determined, hard working, and so good natured!

As next Wednesday comes quickly, I think we're ready and Donovan's getting there. We've had all the appointments with the surgeon, the hospital bed and everything else he'll need for his time at home has arrived and Mary Free Bed is ready for his rehab.

On March 13th Dononvan will undergo a Derotational Femoral Osteotomy on both of his legs. This means that they will change the structure of both femurs and alter muscles and ligaments around one, possibly both. He's been under the excellent care of Dr. Maples, his orthopaedic surgeon, who has monitored his hips and legs annually since he was diagnosed at two. A year ago, she began to recognize that one of his hips is showing signs of sublexing (partially dislocating). With an extensive review, including a full gate lab analysis, it was determined that this surgery is the step to take to prevent further dislocation, adult arthritis, and increase the efficiency of Donovan's gait. Dr. Forness will perform the surgery which we understand will take somewhere around six hours. As with his last surgery, we are so grateful for the expertise of his team and the compassion they show him!

We found this video of Carter, another little guy who's been through the same surgery... not sure how his situation compares with Donovan or if we'll be so fortunate to see these beautiful results as clearly but it does give me peace in the decision we've made to take this step. I love seeing it not only because it shows him after the Femoral Derotation Osteotomy but also after the Selective Dorsal Rhizotomy, which Donovan had done in 2008 (see all the previous posts).

The next three months will take Donovan through the surgery at Helen DeVos Children's Hosptial, four weeks at home while the bones heal, then on to Mary Free Bed for 5 - 7 weeks of inpatient rehabilitation.

We are incredibly humbled and appreciative of all the support surrounding us!