A Moment of Chills

We've been so ecstatic to see Donovan on his feet again! It helps us to see our home light at the end of the tunnel and gets us closer to seeing the benefits of all that we've asked of him. Today during a team conference we set the target go home date as the 13th but we're optimistic it may be sooner.

It is a learning process and I think important to talk about particularly for anyone considering this venture. We've tried to post video of Donovan's walking but apparently there is a blogspot bug right now. When we say he is walking, it means he is moving his own feet under his own strength using a walker but it is with assistance from his PT. What I see is that we can now clearly see the lack of strength, exactly what we expected, as he lifts his right foot. He's working hard on keeping his feet facing straight ahead and not crossing one foot in front of the other. Imagine the feeling of having your leg completely asleep and having your muscles acting just like they feel to you. This is what Donovan's gait looks like. We celebrate because we know Donovan and we know he won't accept this. He is working hard,as are the staff here at Mary Free Bed, to push himself... so important to his continued gains in strength, exactly what will wake that leg up.

So this is really what Dr. Skarli told us to expect, first a lack of tone and strength. What gave me chills today though was turning around and seeing Donovan having crossed one ankle over the opposite knee... something he has never been able to do before! For me this was the sure sign of decreased tone. I ran for my camera and stopped to tell everyone at the nurses station about Donovan's new found flexibility.

And. to balance the hard work of walking, the Recreational Therapist brought Donovan the coolest bike ever to build strength in a different way. This led to a roaring race around the hospital corridors between Donovan and Carl, who balanced the competition by racing in Donovan's wheelchair.

Milestone Sunday!

Whew! What a day. After a night of wrestling with his stuffed animals, the new day started off "normal" with Donovan not wanting his breakfast and only eating that which he had a flavor for (or which he felt if he didn't eat, he would lose video game privileges for).

During his second or third (I lose track) PT session this morning, the therapist had Donovan crawling across the floor like a speed demon, playing chase the frog. He was giggling and racing across the floor and enjoying the moment as if nothing had occurred.

After lunch during his last PT session, he took his first steps! He was almost as proud as his parents as he worked his way to the air hockey table to challenge his dad to another duel. Of course he won again, 7 goals to 4. When you look at the video, he has his "robot boots" (AFO's) on (that's what Donovan calls them), with his hospital socks over the top, which is why you can't see his legs and toes.

Well as if that wasn't enough excitement for one day, Donovan got his first day pass, and escaped the confines of his room and floor, to attend a Whitecaps Baseball game. Thanks so much to Catherine and Dan (and Dan's firm) for inviting us to their suite at the game. It was the perfect venue for Donovan to catch a few innings, eat a basket of chips, have a cocktail (juice box) and finish with a big baseball cap full of ice cream, before crashing in mom's arms for a good old fashion nap.

Well it is 6:15pm and Donovan is relaxing, eating dinner and watching a Thomas The Tank Engine video. We figure after that long nap at the ball park, he'll be up until 11pm tonight, long after dad falls asleep next to him.

Tomorrow will be another busy day as dad has to drive to Lansing to meet Bridget's sister to pick up Miss Emma and Master Carl after their weekend away with their cousins. We aren't sure they will want to come home after a weekend of rough housing with cousins Ricky, Elliot and Emmet. Thank you to Sarah and Eric for taking care of Emma and Carl for the weekend! Donovan will have another full day of therapy and working towards those first independent steps home.

Day 6 - Mary Free Bed Routine

Donovan continues to improve daily, gaining strength, standing more, and with better form. We have devloped routines around his schedule as well as Emma's and Carl's. We eat as a family in the play room down the hall almost every night and the kids get to play together for a few hours too. Donovan is sad to see his best friends Carl and Emma leave at night. Carl and Emma are sad to go home too, but we suspect it is more about the air hockey and video games than Donovan, Mom or Dad.

Donovan is doing well enough now that we are able to get day passes so he can leave the hospital grounds for a few hours. This weekend he will have his first trip since surgery in the car. The lead PT, Joe, checked out his car seat and gave it the thumbs up for being supportive enough. A few hours at the zoo or the gardens will be great for him, and even better for Mom. MFB is providing us a wheel chair so the D-Man can get around easily, and Dad doesn't have to carry the 40lb fighter.

So all is going better than expected and we are optimistic we will be home in a few weeks. Much sooner that expected!

Mary Free Bed Day 4: Determined Donovan

In true form, Donovan has been doing remarkably well. He's standing for brief periods with guidance from therapists and us. He works (i.e. plays with new toys and in new ways) for six 30 minute sessions each day and he's incredibly strong and tolerant. We can see how hard this is though, he's had some rough moments and has taken a nap on each of the past two days... something he hasn't done in close to a year.

The therapists are great and do a good job of challenging him while keeping him engaged. The work behind the play has included practicing properly standing, getting up from a seated position, bending to pick something up and dressing himself. His proudest moment for today was crawling to his wheelchair and getting himself in it. We've heard from his primary PT, whose been doing this for 2o years, that Donovan is doing really well... more than they expected from a rhizotomy patient.

We had our first "in-patient team conference" today. This is a time when we sit down with his lead physician, Dr. Rush (a physiatrist), his PT, occupational therapist, recreational therapist, nurse, social worker, and the manager of the in-patient program to discuss Donovan's progress and how to move forward. Most of the discussion was dialogue about the best approach for ensuring that Donovan will grow strong with proper foot and ankle use. He will have new AFO's (braces from his feet up the back of his calves) and may have one or both legs in casts at some point in the near future. This all helps him correct this placement and progress.

We're working towards the goal of Donovan walking a few steps with help and with confidence. The intent is to get him home as quickly as possible and to ensure he's getting the most out of this intensive therapy.

We can't express enough how grateful we are for all the help and support we've received. We've been able to have dinner together as a family most nights with wonderful meals that have been provided. This has been invaluable! We're more than a week into this and each of the kids seems to be doing great. We try to spend as much time together as possible and connect on the phone, like Donovan saying good morning to Emma and Carl this morning. Even Emma and Carl were getting a kick out of skyping (instant messaging) Dad last weekend as he spent the night with Donovan.

Air Hockey King!

Another good day for the big D-Man. He played air hockey for two of his four PT sessions (and one Thomas) with with me and won both times. While he was playing, his PT spotted him, however, he stood tall and proud, much on his own, as he pounded the puck into the goal. With little assistance he reached the puck and when he scored, threw his arms in the air and yelled his complete dominance over dad (and at the same time telling me to let him win!). He had no trouble supporting himself and was very much a happy Donovan. We need to continue building his strength, coordination and balance, but he is making wonderful progress.

His is getting stronger by the day while eating and sleeping well. Donovan continued his string of magic and charmed yet another set of nurses and therapists who all agreed he is a very special and determined boy. Dad and Mom couldn't be happier!

Dad's update

It's Sunday morning and as I sit here listening to the birds in the court yard outside the family room welcoming the sunlight, it is hard to describe what a great day Saturday was for Donovan. I can't say enough about the therapists here at MFB and the effort our little guy has already put in. Needless to say, we were hoping he would be ok just moving around a bit. But instead, in his very determined way, he would have none of just a little progress today. As Bridget described below he made great progress with each succeeding session while finding time to play with Thomas, air hockey, video games, play doh, and of course watching a few kids shows. He fell asleep with Monkey and Puppy in arms at 8pm!

The cherry on top of the day, in his last PT session, he sat on a bench and got up into a standing position on his own, with only the therapist guiding his hips and "spotting" him to help his balance. He is a very determined guy to play the way he wants to play! His attitude is great and he complains very little, except as Bridget mentioned, when he is frustrated. It is truly a remarkable blessing how well he is handling everything. Much better than Mom and Dad!

Phase Two- The hard part begins

As I think about what to share, all that comes to mind is exactly what I read on Gracie's blog about her first day of therapy; it was an emotional day.

It was exciting because Donovan did things we weren't sure he would be able to do this early, starting with sitting up for the first time. And it was heartbreaking because he was so frustrated not being able to do what he could just one week ago.

After his second physical therapy session (2nd of four today), he just wanted to stay where he was and play with... you got it, Thomas. Pounding his fists on the arms of his wheelchair because all he wanted was to sit on the floor and play at the train table. The problem... Donovan can't be out of his chair or bed yet without a therapist so that he won't overdo it. So we did our best to try to distract him.
It got better through the day as he gained strength, in what seemed to be right before our eyes.










He finished out his occupational therapy(also four sessions today) with a riveting game of air hockey between him and Carl. See how he's standing (with a little help)!

The week's catching up with all of us. Last night, I was surprised with a midnight visit to take Donovan's vitals. I must have been as abrupt as I felt when I said "can't it wait until the morning". I woke up this morning with a sign on the door saying "Do not take vitals before 6:30 am!" Something similar to "Do not feed the tigers"

Tonight I'm at home enjoying time with Emma and Carl while Steve is hanging with Donovan.

Donovan's Thoughts on Pain Control

I'm not taking it! Monkey, save me!!

(He's down to liquid Tylenol with Codeine only during therapy times... we've learned it doesn't taste very good)

We're Moving!

Yeah! Donovan is doing so great they're kicking us out. We're on our way, via ambulance, at 2:00 this afternoon. I'm heading over to decorate his room. He has continued to ask to go home but hasn't seemed upset when we tell him we're moving to his new room at Mary Free Bed.

Everyone here at DeVos has been great! The nurses, aides, child life specialists, docs, and hosts have all taken exceptional care of Donovan and us. Thanks to all!

A New Friend- Gracie Sloan

We've met a new friend out in blog land. Gracie Sloan is 18 days younger than Donovan but had her Rhizotomy (in St. Louis) one week before Donovan, ironically on Donovan's Birthday. If you want to see the progress of another determined and adorable child, her site is www.graciesloan.blogspot.com

He's Mobile!

Check it out... Donovan's determination gets him to the train table in the play room. His first trip out of bed and into a chair. He was so brave. We are so proud!

1:pm Donovan Hello!

Donovan was feeling so good after eating a hot dog, mac n cheese, chocolate milk, and the main course, M&M's that he has a message for everyone! Woo - Hoo!

Thursday the 14th - 11:00am

It was a rough night with Donovan waking often and having the falling sensation. This morning he is doing much better and in good spirits. Dr. Skarli stopped by and thinks everything is related to the medications, so after having the epidural reduced for the last 24 hours they removed it this morning as well as the catheter and other assorted tubes! Yeah!

There have been numerous nurses, occupational and physical therapists stopping by to evaluate Donovan's progress and asses his capabilities. They raised his bed to it's highest level to date and PT is coming at 1pm to see if he is ready to be put in a reclining wheel chair. Donovan wants to go to the play room to see the Thomas table.


He has been interactive with us and the staff (playing boo with Dad) and watching a few shows. Donovan was very excited to open a present from Aunt Julie, an etch-a-sketch, and has been playing with it since. He was also very happy this morning to see a new poster Emma made him to put up in his room. Monkey and Puppy are hanging out with him, and he did very well, little complaints, as our nurse changed his bed.


If all goes well we will be moved to Mary Free Bed tomorrow or Saturday. Donovan needs to start eating and drinking regularly, and going to the bathroom. So overall, things are going well, he is in good spirits mood and would enjoy having a few visitors today. Just give mom or dad a call and let us know when you would like to come.

Well it is 2:30pm and Donovan is being very quiet and resting. He slept most of the morning and isn't eating or drinking (although he had a little bit of a slushy). As Bridget mentioned in the previous posting, they believe this is the normal 3rd day after surgery effect.

The PT is here right now moving his legs and stretching him and he isn't complaining of pain, a good thing! Bridget just stretched his foot and can really feel the effect of the surgery! The therapist is playing with Donovan and Puppy and Donovan is giggling just a little bit.

I was talking to him earlier and when i said, "would you like dad to go sit down and leave you alone" his immediate response was a very stern and determined "YES"! So we are letting him rest and watch Thomas.

Wednesday the 14th

I spoke too soon. Donovan was running a bit of a fever last night and did get sick. They are saying that it might still be just typical post op effects but will run a few tests just in case. Please call before visiting. We'll post again when he's feeling better and up for visitors.

The Day After

We're amazed! Donovan is doing great. Just four hours out of surgery last night he was asking for cracker after cracker... after cracker after cracker... You should have seen the crumbs they found in his bed this morning!

Thanks for toys, Aunt Juls & gang!

He's tolerating having to lay flat and slept through his first night. He didn't experience any of the nausea we've heard so much about. I believe this is a good sign of what we're going to see with his recovery from the surgery. The pain has been managed really well by the team here at DeVos. We've been able to slightly elevate his head tonight and see how he tolerates it. He seems to be doing great and hopefully by the end of tomorrow will be able to sit upright in his bed. This is a time we're looking forward to for him. It not only is something that he wants but hopefully will help us begin to understand how much his strength is impacted.

Donovan is really grateful to have visitors, especially his "best friends" Emma and Carl. All are doing so well and we can't say enough about our dear friends that are helping us to keep all our kids happy and occupied. We even had a visit today from Emma and Carl's new friend Indigo, a dog with the West Michigan Therapy Dog, Inc.

Hurray! Dononvan's Watching Thomas!

The true test of the day is the fact that Donovan is doing great, resting comfortably and watching his favorite, Thomas the Tank Engine DVD. He came out of the sedation very well and it has taken us since 2:30 to get settled into the room. It is now 4:45pm and Bridget is down getting her first bite to eat (other than the muffins we brought). The staff is taking very good care of us.

Donovan has his own private room with a view of three larger crankies (tower construction cranes) that are working on several building projects near the hospital! He is already talking to and charming, the entire staff to be under his complete control. His teacher from new community, Mrs. Conchrin, stopped by to check in on us and visit one of her favorite students.

We are now settling into the routine of the hospital and glad the day is near an end. Bridget will stay with Donovan tonight and I will head home to stay with Emma and Carl. Sandi, our wonderful daycare provider, picked the kids up from school and friends and will be with them until I get home. So all is well for know and we will keep you posted. Our little guy is being very brave, not complaining and happy watching Dora, singing with the music.

1:37 PM- He's Done

We haven't seen Donovan yet but we have talked with Dr. Skarli. All went as he expected. There were no complications. They severed more nerve rootlets on the right side than the left which was excepted because his spasticity is more prominent on the right side. They saw a more dramatic reaction with his hip abductors, also what they expected. (Oops, it's actually his hip flexors which Dr. Skarli believes may have been significantly impacting his balance)

We've been told that he may have some discomfort, but will manage the pain with the epidural for the next two days. He also needs to be horizontal through Wednesday so they'll keep him "snookered" (Dr. Skarli's words) to keep his movements to a minimum.

So the big first step is done with expected (ie good) results. Lots of work ahead of us. We are officially packing up from the waiting room and hopefully heading into the recovery room soon so Monkey and Puppy can check on their little buddy!

Noon Update

One of the surgical nurses gave us an update at 11:30am. All is going very well and they are testing the nerve rootlets to evaluate their impact on Donovan's spasticity. Bridget and I are distracting ourselves by playing with the blog, fixing other technology issues, and talking with other people waiting on loved ones. Thanks to everyone for the emails this morning and prayers!

Surgery Day 9:00 AM

The day is here. Donovan was a trooper with us waking him before 5:00am. He did great, although not very happy about the hospital clothes (even 4 years old don't like the drafts) or the oral sedative (which thankfully also takes away his memories of the event). It didn't take long before he was quite droopy eyed. The anesthesiologist was great showing Donovan how his puppy and monkey used the mask to go to sleep and let both Steve and me stay with him until he was completly out.

Dr. Skarli found us in the waiting room just before getting started. The MRI was normal as expected and helped him to see that one vertebrae and maybe a bit of a second will be involved. We understand the less exposure (the less vertebrae) the better because it minimizes exposure to the spinal fluid. He was grateful that radiology moved his MRI through earlier than typical. He's still projecting that Donovan will come out of surgery around 1:00 or maybe a bit earlier. They will call the waiting room and give us updates along the way.

The surgical nurse came in at about 9:30 to let us know Donovan is doing great and all is going as expected.

Thanks to all for your notes to Donovan! We can't wait to share your words of encouragement and care with him.

Five days and counting! Donovan is doing great and taking the last round of doctor appointments in stride. We met with his pediatrician on Monday, his surgeon yesterday, and tomorrow his neurologist. Everything is a "go" and looking good for Mondays main event.

Donovan turned four on Tuesday and we celebrated with his friends with a bowling party on Saturday and with a picnic before Carl's first t-ball game on Tuesday. (Bridget captured the funniest video of Carl running the bases after his first hit. Ask her about it!) Everyone is well and we continue to prepare for the big day!

Just a few days out and we're as ready as we can be. The final meetings with Donovan's pediatrician, neurosurgeon, and neurologist reinforced for us one more time that he is an excellent candidate for this procedure. They said he has good strength and has the right personality with his happy and hard working demeanor.

We learned that Donovan will be fairly sedated for at least two days after the procedure. The neurosurgeon wants him to lay flat for this period and as he put it, Donovan will be "snookered". They have added an MRI before they begin which will increase the time Donovan will be in surgery until 1:00pm. The MRI tells the neurosurgeon where the end of the spinal cord is, which is the point where he will work with the nerve rootlets. This will help him to determine if he will work within one or two vertebrae. This really is an amazing procedure.

We again walked out of the appointments with the sense that this team is talented, experienced, and meticulous. Each has taken as much time as we've needed to answer questions and give us detail. They explain in ways we can understand and give us not only a sense of confidence in them but also in Donovan's ability to really do well. Dr. Skarli, the neurosurgeon warned us to have realistic expectations and cautioned us to not expect a dramatic improvement to his gait for at least a year. He said what we can expect to see first is the reduction of tone (tightness). He gave the example of Aaron, the little guy highlighted in the media links below. Before the surgery, Aaron couldn't lift his foot high enough to put his own sock on but now he can put his foot over his head. Amazing!

There's an amazing sense of peace that has come over us. It's getting easier to focus on the future and not be overwhelmed with the surgery and immediate recovery. I was really happy to hear Dr. DeRoos, the neurologist (and also a physiatrist- specializing in the medicine of rehabilitation) tell us he thinks Donovan definitely may be able to walk with assistance when he comes home. We've heard varying thoughts on this but to know he has confidence means a lot.

We'll keep the blog updated as best as we can next week but we fully expect to spend the first three days passing time as Donovan is in this sedated period and not have much to pass along.

We are very grateful for the continuing thoughts and prayers. They are helping!

Yesterday, Bridget and I took Donovan to visit the surgical hospital to take a tour of the facility. The hospital provides this to get the kids familiar with what will happen the day of surgery and to prepare the parents for the process. Donovan did great, but all he wanted to do is play with the Thomas trains in one of the play rooms! We have started preparing all the kids for Donovan trip to the hospital. So far everything is going fine. We have various "toys" from the hospital, like scrubs and masks, to practice with, so Donovan can see what he will be working through the day of surgery. For now we are focusing on his birthday on the 6th.