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.

Back in the Saddle

Donovan Rides Again.

Back to what he loves. His horse, Painter, seemed happy to have him back too. The staff were warm and inviting and Donovan giggled and exclaimed "my horse place" as we pulled into the Equest Center for the first time since his surgery.

At the advice of Dr. DeRoos, Donovan's neurologist, the staff put him in a saddle and stirrups (as opposed to the usual blanket and surcingle - bar to hang onto). The thought was posting may help with building strength in his hips. Donovan has taken to it like a natural, holding the reins nicely and working hard as the staff motivate him.

Donovan Delivers- Unbelievable Progress!

May 26th - 2 Weeks Post-Op Early and Difficult Steps

July 9th (just shy of 2 Months Post-Op) 10:39 AM- Giving up the Walker for Ski Poles

July 9th 10:46 AM Giving up the ski poles and nearing the summit

What can we say: Donovan has continued to amaze everyone with his determination and progress! It's hard to believe how much has happened and how little we've shared over these past four weeks since his homecoming. But it's been quite time consuming to be at Mary Free Bed every day Monday through Friday and fit in the follow-up appointments with his various specialists and support specialties (therapist, orthotist, etc.).



Last Friday, the 4th of July, we had a fabulous family day on the shores of Lake Michigan. Along with some friends we spent the day playing in the water, sand, and the resorts putt putt course before heading to White Lake to watch the fireworks from the water. Thank you Mark and Dianne! It was a beautiful day and so fun for all the kids but the most memorable moments were seeing Donovan free standing in sand while keeping his balance and then to our amazement, playing a hole of putt putt with no assistance.... no walker, no Mom or Dad's hand, no wall or piece of furniture to grab or lean on, no support! He was so focused on getting the ball in the hole that he didn't seem to notice that he was walking, swinging, and even turning freely.





That was five days before the video (above) of him walking up the hill and the first of his true free walking. Everyone is amazed! We hear it from his therapists, our friends, and even other Mary Free Bed staff and families who have seen us through all our visits over this past month.

So thank you one more time for your prayers! Ours are continuing to be answered right before our eyes.

More good news!

On Tuesday we had our follow up visit with our orthopedic physician, Dr. Maples, who was extremely pleased with Donovan's progress and that he is doing very well. It is a response we are getting use to as friends and family see Donovan for the first time walking with his walker. Just like when he was two years old and using a walker, he motors around like nobodies business. Dr. Maples said that other than physical therapy, Donovan will not need any other procedures or casting for at least a year! Yeah!

Last night Emma had 7 girls for a sleep over birthday party, so the boys went into Rockford for ice cream and to walk around. I offered Donovan his wheel chair as it was the end of a day and he already had physical therapy and play time with his recreational therapist. But he would have none of it. He wanted his walker and we proceeded to from the car, to the ice cream shop, to the Rockford Dam and then back again. He keeps a good pace as we were with a dad his two sons that are friends with Carl and Donovan.

At the end of the night as I was putting Donovan back in the truck, I asked him if he had fun with his best friend Nicholas, and with a little bit of a sad voice no. Nicolas, Joseph and Carl didn't play with him. I asked him if he was just sad because he couldn't run around and climb as fast as the other boys, he said yes. So I said to him, well, if you keep working hard and practicing with his walker and his doctors (he calls his PT's doctors), someday he will be able to run and jump just like his friends.

His sad look changed immediately to his normal, joyous and most precious Donovan smile and with big hand and arm gestures, he said, "Yes and I'll go zoom, zoom zoom really fast and beat them"!

When Carl, Joseph and his best friend Nicholas returned from the bathroom, he called them to his door of the truck (he was in his car seat) and happily and proudly showed them his favorite animal, Froggy (who goes with Donovan everywhere), telling him all about Froggy and that he had fun with them.

That's our Donovan, Happy and Determined!

Our First Week Home

We've been home for a little over a week now and in some ways it feels like were never gone. Not to say that Donovan's life is exactly the same, obviously it is not, but all the kids have an amazing spirit and they have done incredibly well. Donovan quickly got back in the groove at home. He gets around the lower level of the house with his walker and is very comfortable and strong with most situations like sitting on his stool at the island, swimming in the bathtub, maneuvering across the yard, and building houses for froggy.

Emma and Carl have welcomed Donovan home with tons of love, lots of care, and the most precious "I missed you buddy" hugs. Of course, we're also right back into the many joys of three young kids occasionally tormenting each other but it's all good.

We're taking Donovan back to Mary Free Bed each day during the week to continue with his physical therapy. He continues to work hard, shows a ton of self determination, and we're grateful to have therapists that can cajole our four year old, strong willed, silly, Donovan.

Each time we're asked how Donovan is doing, it's easy to say "great"! He is happy, getting around, and accomplishes all that he wants. What is a bit harder to understand is how much he'll gain in the long run. His work is very much centered around strength training. He continues to drag his right foot a bit and turn it inward, which we expect until he's stronger. We're learning ways to motivate him to do a lot of what you would find in a Pilate's class... strengthening his hips and quads. We're helping him to set new patterns like bearing his weight back on his heels instead of on his toes. Much of this is assisted through his AFOs (braces) or Robot Boots as Donovan likes to call them. They force him to place his feet flat on the ground and help prevent him from going back to old positions. The AFOs are important to Donovan's rehab. They were custom fit for him but require an amount of tweaking and work before we know they are truly helping and not hindering him. It's a continuous process of observation and inquiry. We're seeing his neurologist and orthopedic surgeon this week and are looking forward to hearing their comments on his progress.

As we left Donovan's stay at Mary Free Bed, we kicked off his homecoming celebration with Carl's adventure at Fifth Third Ballpark. Along with his T-Ball team, Carl got to enjoy the game and even get down on the field for an entertaining between inning moment of cow tipping (two elementary aged kids blind-folded and set out on the field to find the guy in the cow costume by listening for the ringing bell). Carl wasn't quite a happy guy as he felt cheated by the fact that he never heard the bell but being on the field and with the players was quite a moment for him.

We're Going Home!

"I'm going home, oh ya, oh ya, I'm going home, oh ya, oh ya" was the chant Donovan sang out as we celebrated with a "going home parade" last night. Deb and Emily, our Rec Therapists, decorated Donovan's bike (mounted Monkey on the handle bars), his helmet and with Carl and Emma wearing party hats and making noise with horns and noise makers, Donovan peddled around the whole 3rd floor for his victory parade! He was very proud! We continued the parade out to Corey's (one of the RN's) motorcycle parked in the ramp! A big night of biking for our guy.


So yes, on Thursday (today) we have one more day of in patient therapy then at 4:30pm, we will pack up the final stuff (think moving out of a dorm room) and we are off to our final celebration, a night at the Whitecaps game (local AAA baseball)! Carl played his last t-ball game of the season last night, and his league has a night out at the ball game. And he was picked to "run the bases" between innings with a few of his teammates, so he'll have the chance to really ham it up with siblings cheering him on!

We can't thank the staff here at Mary Free Bed enough for what they have given us and Donovan this past month. Their kindness, understanding, extra - extraefforts, and just plain humanity has been wonderful. Donovan is well on his way to a wonderful recovery. He has gone from barely able to move his legs to crawling, walking with a walker, and peddling, to taking a few precious steps on his own.

A few special thanks to the staff here that worked the most with Donovan. Physical Therapy: Joe, Star, and Mitch: Occupational Therapy: Daniella: Recreational Therapy: Christy, Deb and Emily: The Nurses: Deb, Katie, Corey, Tahaney, Mary,and Diane. Also, we want to thank Jackie (Dir. In Patient Therapy) Betty (Dir. outpatient Therapy), Deloris (Social Worker), and Dr. Rush, who took the time to listen to every concern and suggestion we had with grace, even when we were not so graceful (ok, that was me being blunt, Bridget is always graceful!)

On the home front, again we can't begin to thank our family, friends and parents of our kids friends enough for all their support, dinners, phone calls, emails and daycare (disguised as play dates). The Shook family (Carl's home away from home), the Sines family (Emma's home away from home), the Merchant's, theHelm's, the Ducey's, Ann, Jan, Diane, and of course Sandi! These are only a few of the many that have meant so much as we have made these initial steps on this journey.

Thank you all very much!

Donovan will take Friday and the weekend off, but then on Monday it is back to work with 45 minutes of outpatient therapy five days a week (Monday through Friday), and lots of stretching and therapy at home with Mom and Dad, not to mention, constant play with Carl and Emma!

This blog will continue so as they say in the comic books, until next time, stay tuned to the journey and adventures of "Donovan, licensed to charm".

Another Week of Impressive Results

Donovan continues to improve and impress with his quite determination. Ok, sometimes not so quite. Today, after his last therapy session, the therapist wanted Donovan to use the walker, and walk from the therapy room to his room. About 40 feet or so. When she went to put on the support strap around his waist to aid him and keep him in check, he loudly and stubbornly said "No, do it myself"!

The poor therapist didn't know what to do (her first time with our guy) other than let him go. I came out of Donovan's hospital room when he had about 10 feet left and he proudly exclaimed "look at me dad, all by myself"! and cruised right by me into the room asking to watch a Dora Video. Like I said, impressive determination and stubborn to the core, when he chooses to be.

Yesterday, he wanted to play pac-man, so his therapist said he had to walk, un-assisted, in order to earn his time on pac-man. He stubbled a couple of times then took seven steps without anyone touching him. Then, he got that Winston Churchill look to him and on his second try, went 15 steps, and exclaimed,"Daddy, all by myself"!

More Highlights from the Week

We figured we may as well springboard potty training while here since we held off until after the surgery. No one motivates like our new friend froggy (froggy has gone potty a few times... not so much luck with Donovan)

Saturday night we took advantage of the hospital's red wagons and connection to the Lacks Cancer Center. Along with good friends we ventured over to the roof top peace garden, prayer labyrinth and conservatory. A beautiful and fun night!

The week wrapped up with Donovan's idea... a birthday party for the triplets: Monkey, Puppy, and Froggy. Emma and Carl brought bananas, balls, and a lilly pad from home for the trio and there was cake for all.

Weekend Update - Not SNL

Well all continues to progress well. We haven't been posting much as the days melt into one another and a routine has taken over. Donovan progresses each day and can stand independently while a therapist steadies him and corrects his stance. He likes doing this while playing pack-man and while he continues to beat dad at air hockey.

Yesterday, while only holding dads hand and with the therapist holding a safety strap around Donovan's waist, we walked from the play room to the coffee room and back (a good walk). No Walker! At one point he let go of dad's hand an held the railing that lines all the hallways here.

Donovan continues to work hard and assert himself, as he gets more comfortable, brave and a little spoiled from all the attention. He is learning to manuver his wheel chair on his own and his days are filled with therapy, puzzles, play-doh, Thomas videos, Thomas trains and tracks, walks around the outside paths, pac-man, hockey, building homes with blocks for Puppy, Monkey, Froggie (a new member of the family), Coffee (a new build-a-bear member of the family), Elephant, Reindeer, Rabbit, Tang (the orangutan), and of course Big Duck.

Last night Aaron (the first boy to have Donovan's procedure done in GR) and his family visited us for a pizza dinner and play time. We had a wonderful time and the kids got along very well. The parents talked and talked until long into the evening comparing notes and discussing Aaron's and Donovan's progress and experiences. Aaron's family is very nice and plans for play dates ensued.

Emma and Carl are doing great with Mom being at the hospital all week and Dad their on weekends. We continue to be grateful for all our the help we are receiving and for every ones thoughts and prayers.