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!

Where to go from here....

It's definitely been a while since our last post but as Donovan's rehab has progressed, we've had many thoughts to share with anyone else considering this surgery. We've just been awfully busy with therapies, school, kid's activities, and all.

First, the question we get from everyone... how is Donovan doing? He's doing amazingly well! Just look at him peddling his way to the finish line at the DeVos Children's Bike Race in downtown Grand Rapids in September. Donovan joined big brother Carl to give it his all across the bumpy brick roadway. As we've always recognized, his personality- his determination and good spirit- have ushered him through the hours of hard work he faces weekly. He continues with three days per week of outpatient physical therapy and receives a few hours of school based PT and OT through an Early Childhood Learning program at our public schools- thank you Karen Hite, Ramona Murray, Ms. Judy, Tom and the rest of the team that serves him at Meadowridge! Doing well means he is functionally able to go just about anywhere he wants while walking without a walker or crutches. He can keep a rather quick pace- sometimes to our surprise and is still just as determined as always with most times expressing that he doesn't need help and will do it himself.

For any parent or individual considering the SDR, I think it's also important to understand the things that continue to catch our attention. Before the surgery Donovan was walking without assistance. He was able to get around and even run pretty darn quick when racing Emma, Carl, or friends. The fact that Donovan is moving as well is amazing considering the changes to his central nervous system but we weren't after just having him walk again... our goal was and is to give him a better gait, more stability, and more freedom from increased tone each time a growth spurt happens. We know the spacticity is less prominent in his gastroc muscles (around the ankles that had kept him from placing his foot flat on the ground). We can feel it when doing his stretches and we can see it when he takes slow and deliberate steps as opposed to spontaneous you can't catch me steps. We believe he is more stable, a little early to say for sure since he is still in the process of gaining strength. He definitely falls less than before the surgery and we are so very thankful for this! We have however, recognized that his gait has not improved to the degree that we hope for. When moving quickly he has reverted to his old habits of being on his toes and seems to be turning his right knee in more than he had in the past. But, we are still hopeful that we can counter these habits as Donovan continues to gain strength and we make changes to his AFOs in order to force him back on his heels more. So, we have asked those that guide us, his PT, neurologist, and orthopaedic surgeon to assess him more frequently with us and work together to make recommendations for changes to his orthotics, PT, treatment, etc.

As much as I admit I have quite a critical eye for his progress, I also remember Donovan's neurosurgeon warning us to be patient, that it takes a full 12 months before we will truly see the gains. We just passed the 6 month mark.