Infant Treadmill Study

November 18, 2012 by Kate

Sounds like an oxymoron. An infant on a treadmill?! How can this be?? Infants can’t even walk!

After Colten was born we were invited to join an intervention study through the University of Michigan’s Kinesiology department. The study is exploring the benefits of early intervention efforts on myelomeningocele babies. They are looking at bone density, motor skills, and sensory reception. With the lack of or limited movement some of these kids have in lower extremities, fractures are common because the less use and compression of a bone, the weaker it is.

It also is the belief of the research team that the “walking reflex” infants have through about 6 weeks, which then disappears until around 8 months, is something to be captured and utilized instead of shut down. They think the reflex doesn’t actually go away, that the body simply becomes too heavy for the child to move in that way. So encouraging continued use of the walking motions and watching the overall weight gain could help in the long run.

This past Thursday, Colten went through an initial evaluation consisting of some base measurements of his body and a video of his movements. The team extracted quite a bit of data from his movements and even registered movement from his calf (gastrocnemius) and shin (tibialis anterior) muscles, which we did not anticipate. A big part if me wants to ignore this finding because it gives me a lot of hope. That sounds weird but I think mentally I flip-flopped from my original perspective of “hope for and expect the best, and deal with the bad as it comes”. I felt we kept getting kicked down at the beginning (higher defect level, shunt, then shunt revision) and my hopes kept getting shattered. So recently I find myself having more of a worst-case scenario outlook. I feel like I’ve accepted a wheelchair as the end result, and if we don’t wind up there then GREAT, we’ll take it!

Back to the study though. Colten did four one-minute treadmill trials. He was not very happy and didn’t do too well. But he did display a few movements they were hoping to see – mainly pulling a leg forward after the tread pulled it behind him. Then they laid him down on the table and just registered random movements. He was so tired he actually just fell asleep on the table! The team gathered other data: body fat, length of arms and legs, circumference of head, arms, legs, and his foot length (LONG!)

Because he was naked for this part of the study, I only have one picture that’s acceptable to show:

The team came out to our house today to complete some more evaluation including reflex testing and to bring us our infant treadmill and train us in Colten’s daily workout options. He was in a much better mood today and really took some “steps”. What is actually happening is that as the treadmill moves, Colten’s legs are pulled behind him and cause a feeling of imbalance. This makes him want to regain a sense of balance and pull his legs under him or more forward. Because he has quad movement and strong hip flexors, he can do this. More so on the left than the right. His right leg tends to drag behind him quite a bit and doesn’t bother him as much. This could be due to a more severe lack of sensation in that foot/leg compared to the left side. But he does pull the right forward a couple of times.

Reflex testing:

Here’s a short video from today’s treadmill “walking”:
Click here to watch on YouTube.

The treadmill has a slightly tacky feel to it. In typically-developing children, a normal treadmill works fine. In myelo kids, the research team found those treads to be too slippery. The tackiness allowed these kids to feel it more. Then the team found that adding a pattern to the tread encouraged more engagement during treadmill time, at least once the children were closer to and beyond six months of age.

Besides treadmill time, Colten will do “baby steps” and bounces as part of his 10-minute workouts, five times per week. “Baby steps” are done by holding Colten over a flat steady surface like a counter or table, or even the treadmill turned off. Then by moving his body forward, we would hope to encourage the stepping reflex then as well. Bounces require us to hold Colten in front of us and get his feet to set flat on a surface (counter, our lap, the floor), then lower him to a squat position, then raise him up off the surface. Eventually we would hope he pushes off and accepts bearing weight on his legs.

All of these activities are to encourage bone development. They aren’t necessarily designed to make him walk independently or even walk at all. But they should help create patterns in his brain and nervous system that certainly can aid in walking development. And the muscles used in these exercises certainly will aid in walking when the time comes.

In other news, we hopefully have a big lull in medical stuff for a while. If the shunt continues functioning, we may not have to return to Mott for a few months! Colten starts in-home physical therapy after Thanksgiving and we start treadmill activities now. Other than that, we are hoping for a quiet, enjoyable holiday season! So if you don’t hear from us too often, assume things are progressing as expected.

Thanks to everyone that has reached out, visited, cooked, donated, hugged, partied, babysat, called, sent cards, or supported us in any way! The past couple months certainly were made a bit easier because of each of you. Thank you!!!

You Put Your Left Foot In, And You Shake It All About

November 13, 2012 by Kate

Colten’s motor response has been completely absent below the knees. Until a few days ago. When feeding him, we often mess with his toes, feet and calves, hoping to stimulate his body to make the connection that “hey, there’s something down there!”

We were told that usually 2-3 weeks post-op is when you have what you have – that he could see gains in the first couple weeks then he would stable out in terms of motor and sensory response. But a few days ago as I scratched my nail on the bottom of his left foot, ever so slightly he flexed his ankle up away from my finger.

We keep trying to remind ourselves that he’s only a baby still and we certainly never thought about how or if our other kids would walk when they were this young. We didn’t look that far into the future. We simply enjoyed them as they were at that age. And while we do enjoy Colten as he is at this age, it’s hard to avoid the future outlook simply because it’s thrown at you with every appointment, every diagnostic evaluation, every therapy appointment, and every medical document sent in the mail.

Now ankle movement isn’t the deciding factor if he will walk independently – it has more to do with the motor responses around the hips. And we’ve been told he may not have much in the hamstrings and glutes. But we were also told he had NOTHING below the knees. So we won’t ever assume it’s a “done deal”. We’ll just keep enjoying him and taking advantage of what he shows he does have. And if we find that sure enough he doesn’t have sensation on his feet, we can design a “safe biting” chart to give his brother Max. Kidding. Maybe.

We had the pleasure of connecting with another family recently and enjoying some time at Play., an indoor play place in East Lansing that is wonderful for kids! One of their sons has Spina Bifida/Myelomeningocele as well. It was definitely a small world connection – one of Richard’s mentor teachers knew the mom, and I knew the mom’s sister from way back in high school/college days! You can follow the story of their Redirected Flight on their blog. Kelly has been a wonderful source of strength and rational thought and information for me over the past few weeks that we’ve connected. Their son, Grayden, is so amazing to watch! They were given a poor outlook for his walking abilities as well, and he is defying everything by walking completely independently – no braces or mobility devices like walkers. They are avid supporters of the Anat Baniel Method (ABM), which we are exploring for Colten as well. It’s an interesting therapy that works on body/brain connections and focuses on improving what a person can do based on their existing abilities and slowly advancing them at a comfortable speed, instead of pushing them too far beyond their skills just to align them with typical-developing children.

And in COMPLETE contradiction to what I just wrote, we are entering Colten into a study at U of M that is focusing on improving bone density in myelomeningocele kids. Since they are prone to more fractures due to lack of use of some bones, doing impact exercises (walking, jumping, etc…) could help develop stronger bones, thus reducing fractures. So how do you do impact exercises with an infant? Apparently you hold them over an infant treadmill to walk for 10 minutes a day. Seriously. I have no idea how this will work since Colten barely lets his legs hang down and can’t feel much below his feet yet. So we shall see. We have our first appointment/evaluation for the study Thursday. More to come – with interesting pictures I’m sure, after that!

Here are some other recent pictures (or click Photo Stream at the very top of your page for more):

The last picture shows the healing progression of his back. I pushed it down a ways in case you are queasy. If you are, stop scrolling. The image collage shows the ruptured sac of meninges on his back after birth and frankly, it is a bit nasty looking! But interesting!

Home Again, Home Again, Jiggity Jig

November 7, 2012 by Kate

Discharged! We are on our way home with a functional shunt (that hopefully lasts longer than two weeks) and a new battle badge (scar is an icky word).

Back to his turban bandage… My parents came last night and we had a little fun at Colten’s expense, celebrating his Arabic heritage:

When Colten’s turban bandage came off, we could see where they re-opened the incision on the top of his head, and also made a new incision behind his right ear. I didn’t ask specifics but I believe they do that to better access the various parts for testing without having to remove the entire shunt.

He seems a bit more in pain this time around and is on Tylenol regularly. When the doses are properly timed he is fairly content. Although I had a weird dream last night about him taking his hands and scratching at his incisions on his head. Just recalled that. Weird.

Well, we are busting out of this joint again. And while I love the staff and services, I would rather be home. And I’m sure this little trooper is tired of being poked, prodded, cut and stitched! But he’s still smiling…

Recovering, Arab-Style

November 6, 2012 by Kate

I am incredibly tired so this is short. Colten’s surgery went very well. He’s doing great, back in the regular room. The probe part of the shunt, the piece that goes into the ventricles and starts the drainage process, was not functioning properly. It was early in the malfunction so they were surprised we caught it already and of course glad that we did! The neurosurgery team replaced that piece, verified that everything else was working and closed him back up. We will be here overnight for observation and recovery.

Not sure why he didn’t have this type of bandage the first time but here is Colten paying tribute to his Arabic heritage!

Surgery #3 – Shunt Revision #1

November 6, 2012 by Kate

Colten and I arrived at Mott Children’s Emergency Room around 5:30 PM. They were expecting us, which made it easy to check-in. Heck, the ER staff even called me around 4:30 to ask where we were since we had not shown up yet but were on their “expect soon” list. Talk about good ER service!

Since it’s now 3:08 AM and I haven’t slept, and I will not get much sleep, here’s the shortest version I can manage:

This evening, Colten had an x-ray of his head and abdomen, an MRI of his head, and a cranial ultrasound. Plus a failed IV attempt, a blood draw, then a successful IV attempt and another blood draw. After all of that we were told that while the shunt looks good on the x-ray and MRI and the blood counts show no infection, the ultrasound shows an increase in ventricle size (ventricles are the spaces in the brain that hold a lot of the cerebral spinal fluid, and where the fluid builds up in cases of hydrocephalus). An increase is not good, that’s what got this kid his shunt to begin with. So something is most likely wrong. Not definitely, but most likely.

Today, Tuesday, at around 4 AM, they’ll take him for a shunt revision surgery. This entails testing each piece of the shunt – the tube that goes into the abdomen, the pump on the side of his skull, and the probe going into his brain. They’ll replace any piece that doesn’t work. They access the parts using the same incisions he already has. They could find that everything works fine. If that’s the case, they leave the parts as they are and close him back up. Then they’ll watch him here for a day or so and see if anything else presents itself. It could simply be that his ventricles are finding their own “new normal” and fluctuating. But due to the sizes they are seeing, they feel (they being neurosurgery) they will find something wrong with the pump or probe.

That’s all I’ve got tonight. I’m going to take a power nap before we head down to surgery. In the meantime, maybe someone can think of a reverse 5-hour energy drink. I would like to be able to sleep for 20 minutes and have it feel like I’ve slept for HOURS. Can you imagine how much more we could get done in a day?!

Goodnight.

PS. I’m not asleep yet because Colten woke up. They’re about to get him for surgery soon anyhow so I might as well sleep later. But I did add some pictures to the Photo Stream page, including two that are of his x-rays. Don’t tell the hospital though. They frown on taking pictures of x-rays and other diagnostics because, “if that picture gets out there, anyone could have access to it”. Okay. I’m not sure what anyone would do with these x-rays anyhow so I’m sharing. Note all the extra tubing in his abdomen – that’s to account for height growth over time!

World Record for Fastest Shunt Failure?

November 5, 2012 by Kate

I hope not. I hope it’s us being paranoid but I’m thinking there’s an issue with Colten’s shunt. We will be taking Colten back to Mott Children’s today at some point. There isn’t a rush but his fontanel (soft spot on top of head) is very full and tight – similar to how it was before the shunt was placed. He’s a bit more cranky today than usual. His fontanel has been more sunken in since the shunt placement so to be so protruding again is an indicator that something could be wrong with the shunt.

I called the hospital to talk with one of the neurology nurses and she said based on that and “mom’s gut”, she would recommend bringing him in at some point today. It’s not a rush, and of course if it gets better we don’t have to do it all. But he seems to also have some swelling or fluid around the pump portion of the shunt which is another indicator of a block somewhere.

So I’m waiting until Richard gets home to finalize plans but most likely I will take Colten down to Mott with a bag packed – a shunt revision means an overnight stay. They will do an MRI or ultrasound to determine if there’s an issue, if there’s a block and where the block is.

Stay tuned. More to come later after the doctors check him out.

Our First Day at Clinic

November 1, 2012 by Kate

[Today was a super-long day, so this is a super-long post!]

Tuesday we came back to Mott Children’s Hospital for Colten’s follow-up cranial ultrasound and long story short, had some movement of appointments for the better. So today (Thursday) Richard and I spent the day in Ann Arbor for Colten’s first “Myelo Clinic”. During clinic, he will see all the specialists – we were told to expect to be at Mott for about 3-4 hours. He is scheduled to see a urologist, social worker, PT/OT, Physical Medicine and Rehabilitationist, orthopaedic, and neurologist. Plus we had our other orthopaedic surgeon appointment moved to today as well at 11:15 AM, before Clinic starts at 12:30 PM.

The older two boys traveled with us today due to my babysitter mistake… I had secured my sister coming into town for the day but had her coming NEXT Thursday. Oops. Lucky for me, a couple former students of mine live down in this area and had their classes cancelled today. So Parker and Max enjoyed the Ann Arbor Hands on Museum, lunch out, a mini tour of U of M including the big spinning square, and a bus ride! Thanks SO much Brynn and Katie!

Before I get into today’s Clinic, we had two appointments yesterday as well (please don’t ask how we get anything else done at this point, because frankly, we REALLY don’t). Lucky for us, those appointments were at home. I love home visiting people – thank you Hayes Green Beach visiting nurses (yay Trish!) and EarlyOn PTs (yay April!). April and I finalized Colten’s IFSP (Individualized Family Service Plan) today and settled on two primary goals for the next six months. I want him to get his legs to 0 degrees, and I want him to know he has feet. It hit me later that in a way, it’s kind of sad that he will never feel what it is like to have feet. He won’t feel “this little piggy…” He won’t get his feet tickled so much he laughs a big belly laugh. He won’t feel sand between his toes. On the flip side, he won’t ever feel a stubbed toe either. That’s the only “good” thing I can think of right now. Maybe more another day. In the end, it was weird for me to even say, “I want him to KNOW he has feet.”

Now, back to Mott’s. It’s such a weird thing being there. We see so many other kids there – some that look “normal” and others that obviously have it much worse than Colten does, and a ton of children in between those points. I feel for these parents. I don’t know how they do it. There were two girls in the waiting room today – one about 3, the other maybe 7. The three year old was moving all around in her flashy pink wheelchair – she was completely mobile and independent and moved that chair like an extension of her body. She was happy, she was playing. She had trouble reaching something on a table and got caught on something on the floor but never appeared frustrated. She just waited till she got some help or moved onto something else. The seven year old was in a far more complex wheelchair and appeared to have a bag for urine collection and she also had a feeding bag. She was fully harnessed in, including a cradle support for her head. She said nothing, made some noises, and was pretty still the whole time. I’m not sure what, if anything, she can move herself on her body. Her mom looked tired – exhausted. I just wanted to go hug her and ask her to share her story but I’m not sure if people would be creeped out by that or appreciate the opportunity to share. Anyhow, seeing children like that makes Colten’s needs seem so insignificant. And in reality, right now, it’s not like he can use his feet for much anyhow!

We started our appointment rotation at 11:15 am with the orthopaedic surgeon, Dr. Li. This was a waste of time in a good way… all looks good. Glad we got that appointment moved from NEXT week to today with all of his Clinic appointments. I would have been quite irritated if we would have driven out all this way to hear the doctor say, “It looks good, we’ll see him in a year!”

Clinic started at 12:30 PM – Colten weighed in at 10 pounds, 1 ounce, and 21 inches long. This was the first time we got what I feel is a pretty accurate height on the kid. His legs are stretching out much better these days!

At 12:40 PM, Dr. Ramnath with Neurosurgery came in. One of the questions we were hoping to get answered today was Colten’s actual level of defect versus his level of function. The only thing we heard while in our NICU stay was “L3” and we think that is his level of function as people looking at his scans and ultrasounds keep saying how low his myelo looks. So we’re a bit confused and unfortunately Dr. Ramnath wasn’t too keen on the new U of M computer system and wasn’t able to clarify this for us. It really didn’t matter – it is what it is and he will do what he can do regardless, but we would just like to know for our own bank of knowledge.

We did ask about stimulating the feet and calves to get the brain to “know” that those parts are there, and what sort of changes we might be able to expect if any. Dr. Ramnath said we can do all the poking we want but if the nerves from the spine cannot carry a message to the brain, there’s not much we can expect. In other words, even though the brain has plasticity, if the nerves going to the brain aren’t functional, it really doesn’t matter. Of course, he added that you should never give up on hoping there’s a change, just don’t spend all your time making him do something he just isn’t going to do – work with what he can do and focus on that.
Here’s a little humorous glimpse into another part of the conversation…
Richard asked Dr. Ramnath… “One of Kate’s goals for Colten is that he’s aware that he even has feet. Is that something that he knows?” Without missing a beat, Dr. Ramnath replied, “Right now all he knows is that he’s got a damn binky in his mouth!”

We were introduced to an infant treadmill study at this time by one of the nurses. I’ll come back to that in a future post because it’s incredibly interesting and I’m pretty sure we’re going to do it. I know you’re itching to figure out why and how people put infants on treadmills, but you are just going to have to wait!

At 1:30 PM the social worker came in to follow up on some of the related services such as social security, EarlyOn, and various insurance items. We received some very helpful information from him!

Physical Medicine and Rehabilitation (Dr. Green), OT (occupational therapy) and PT (physical therapy) all came in together at 2 PM. They moved Colten around a bit and did some muscle testing. Dr. Green is the one that “gets” to classify Colten’s myelo. He’s still young for a final diagnosis but she did clarify for us that his defect level appears to be S1 (the first, or topmost sacral vertebrae) and that she believes he’s more of an L5 or L4 in function (the bottom portion of the lumbar spine). This is different from the L3 we were told before, however, Dr. Green is confused as to why his feet are “so floppy”. If he was truly L3 his quads would not be nearly so strong as they are. Dr. Green did make a point to say that it doesn’t really matter what his classification or defect or function level is, he’s just Colten and eventually we’ll figure out what he can and cannot do and feel. She will be setting us up with an outpatient PT referral with Sparrow. She wants us to get acquainted with the staff there but isn’t concerned about him doing much PT right now simply because he “needs to just be a baby for a while”. That was refreshing to hear as we already will be doing PT with EarlyOn anyhow.

After that we were sent on our way! Some of the other providers didn’t need to see us today. We go back for our next Clinic appointment in three months and do this all over again. Hopefully we have no shunt issues and no need to take Colten back down there before then.

We ended the day at Volz Chiropractic and Back ‘n Balance Massage for a ThirtyOne party with the wonderful Rhonda Rhines! Thank you Rhonda and all those that attended in person and online. Thank you also to Natasha Roberson and Kyle Volz for the use of your offices!

It’s been very weird to have seemingly random people come forward to offer support – whether it’s in services, fundraising, meals, donations or diapers. We appreciate the unsolicited generosity and are amazed at what strangers and even our own family and friends (who we always knew were awesome anyhow!) have done to make things easier on us during this time. We hope each of you know how thankful we truly are! And in case you don’t, eventually we’ll get all these thank you notes written 🙂 Seriously though – we are confused, humbled, amazed, grateful and overwhelmed by all of this. Thank you!

Meet our Friend, Avery!

October 30, 2012 by Kate

Today started off at Mott Children’s Hospital for Colten’s follow-up cranial ultrasound from his shunt placement on October 17th. After some other appointment switches, we also worked in his hip ultrasound today so we don’t have to drive down to Ann Arbor three times in 10 days. The radiologist was even nice enough to throw in a spinal ultrasound while he was doing Colten’s dynamic hip u/s. Guess you can/t have too many of those… Most of the preliminary findings look good and we will followup with the various docs when we bring Colten to “myelo clinic” on Thursday of this week. Clinic is setup for certain medical conditions requiring an array of docs and followups. U of M sets up an appointment time and you cycle through the various providers – in Colten’s case he will see six different specialists. More on this Thursday! For now though, a more recent picture of Colten’s back scar. Cannot believe how amazing it looks…

When we got home from Ann Arbor today we had two special visitors – Avery and her mom, Amber! When we were still in the NICU after Colten’s birth, our awesome PT, Dan, had the social worker (crazily enough – a student of mine from my previous job in the education association world!) contact a family with a daughter who has Spina Bifida and see if the mom would be up for chatting. I was given her contact information but at the time really had no idea the questions to ask or what else I was ready to hear. So I never contacted the family. Then in a series of twists we connected via a SB Moms group on Facebook.

It was amazingly comforting to talk with Amber – to share stories of similar experiences, frustrations, and hopes. It was great to hear her story, to hear Avery’s story. There was a weird comfort to sitting and talking with Amber. It renewed something in me and took me away from the dark thoughts of appointments, tests, braces, wheelchairs and shunts… and allowed me to see a vibrant little girl conquering the odds, and realize that Colten will do that very same thing. Avery is about 1.5 years old and was also treated for a myelomeningocele at Mott Children’s Hospital. Her level of defect is a little higher up than Colten’s, but her level of function is actually lower. So while she has motor control over her lower limbs, she does have some sensation areas that are non-responsive. She has had some other medical things to overcome in addition to the myelo and she’s a fiesty little girl with a laugh that just makes a smile spread across your face! Amber has been diligently blogging about her little lady as well. You can read their story here!

I’m not sure what else to say on this. I just know that I felt so wonderful after talking with Amber… It was just us and the two kids (Parker and Max were thankfully napping peacefully most of the visit). It was real life information, not doctor/therapist-driven information. It was reality, it was hope, it was comfort.

Thank you Amber and Avery!

Colten snoozing in his bouncy seat after trying to stay awake the whole time Avery was over:

First Zoo Trip!

October 27, 2012 by Kate

Finally could get all three carseats in our Jeep Liberty since Colten can now back-lie! We will use the carbed for some upcoming longer drives but hope to be able to travel now as a family. Although Colten’s seat sits between Parker & Max. It could get interesting. Both of them were ecstatic to have Colten in the car!

Colten visited a zoo today for the first time to partake in animal watching and Boo at the Zoo – at Potter Park Zoo.

Oh wait. That’s right… He slept for the full three hours we were there. Except to wake briefly to eat and nod right back off to sleep. He didn’t even get any candy. Gotta love Moby wraps though – he was snug as a bug in our pumpkin costume!

Here are more pictures from our day if you’re interested…

Battle Scars

October 26, 2012 by Kate

The two older boys went off with one of my sisters to a Halloween party so we have a little peace, quiet and TIME to post tonight!

Colten continues to heal and be a pretty normal baby. Here are some pictures of his scars…

Today is also the first day he can lay on his back so I gave him some time that way. No complaints, but he did shift to be more side-lying eventually.

We had our first meeting with EarlyOn Michigan today. It was just an overview of what they offer and an evaluation of Colten to see what his immediate needs are. They’ll develop an IFSP (Individualized Family Service Plan) – which is basically an IEP (Individualized Education Plan) for children that are 0-3 years old. If you’re unfamiliar with an IEP, in short it is a plan developed for children in school to help provide them with certain therapies, modifications or other special needs arrangements. So an IFSP will provide Colten and our family with a customized plan for working with providers and therapists to give him the support he needs as he develops. Colten will also have therapists assigned to him from the Physical Medicine & Rehabilitation (PM&R) doctor, who we meet with for the first time next week.

That’s all for today… watch for another update next week after his cranial ultrasound and shunt check (Tuesday), the EarlyOn IFSP (Wednesday) and the PM&R appointment (Thursday). Yes, our weeks are busy!