The Scoop on Poop

April 20, 2015 by Kate

It’s probably safe to say that all parents get over being squeamish about poop after, well, a week. Those first infant tarry poops really just get you right in the poop game! Then as your child gets older, you experience other milestones such as when they first start eating food and the poop just changes. And stinks. And is all sorts of crazy colors. Their first poop on the potty. The first poop in their undies after they’ve been “potty trained”. Or the first poop they carry to you. Then there’s those parents that get to experience constipation, or the other extreme…

Suffice it to say that poop is just part of having children. We were very fortunate with our first two in that constipation was never an issue for them – way too much fruit in their diets! It always amazed me when another parent would remark that their child goes DAYS between bowel movements. The boys in this house are poop machines! More than you wanted to know, right?!

Well, this post isn’t about your typical poop stuff that you see with most kids. This is about poop and kids with spina bifida (or any other diagnosis that includes a neurogenic bowel). I’m going to write this post in more of a generic sense because I’m guessing as Colten gets older, he won’t really want the specifics of his personal bathroom duties outlined online. Let’s start with the definition of neurogenic bowels – just so you can see how confusing and frustrating the whole thing is to begin with. From the Mayo Clinic:
“Signs of neurogenic bowel include loss of bowel control (bowel incontinence), constipation, bowel frequency and lack of bowel movement.”
So you have both loss of control and constipation, too many movements and not enough movements. Yup, that sums it up. It is complete bowel chaos. This isn’t necessarily a huge deal when you’re a baby in diapers, but for many people with Spina Bifida and other spinal cord defects/injuries, this could eventually become a social concern. And really, it is a big deal when you’re in diapers because you still have the issues of going too much, or not enough and it stinks to high heavens, or its runny and breaks your skin down, or it’s hard and tears your skin up, or its grainy and roughs up your behind… get the point?

So how do most people with Spina Bifida handle it? MANY DIFFERENT WAYS. There are surgical procedures some have as early as 3-4 years old – others have them when they’re adults. Many kids are put on daily Miralax, a laxative (that is not actually FDA approved for kids, nor FDA approved for use longer than two (2) weeks). Some try various supplements from Senna syrup (a natural laxative) to probiotics to digestive vitamins. Some are regimented about their diets and consume certain amounts of prune juice each day. Many of those without surgical procedures that help drain the bowels need to do more to help things flow.

The frustrating part of a child that does not have muscle control down there is that they cannot push, and rarely can they even feel anything moving down there. So what happens in the intestines is that waste products (can we just call this poop from here on out? thanks…) build up and as the poop continues to accumulate, eventually the massive backup will push some out through force. Other things can help move it along – tickling, crying, screaming, blowing bubbles, trying to encourage a child to push, crawling, jumping. But when a child has no feeling of pressure down there and cannot push out, it just comes out when it wants to. The longer it stays in, the more it stinks. So you end up with a diaper that stinks enough that you expect to see an unloading inside, but you end up with a nugget the size of a large grape. Or you get a more liquid release that comes out around a blockage and ends up sitting against the child’s skin and breaking it down. Some kids with Spina Bifida will go through a phase (or years) where they need specialty creams applied to their bottoms due to severe skin breakdown. When you see this type of breakdown, it makes you want to cry! The saving grace is that the kids usually cannot feel it. BUT, it is not healthy to have breakdown there so often as it can lead to longterm issues.

This cycle of pooping/not pooping is where suppositories and enemas come in – often in addition to something from above (such as supplements, oral laxatives, dietary changes, etc…). I’m sure about 80% of you will now exit this blog post because YES, that’s where I’m going next… suppositories and enemas. We didn’t realize that there was such a variety of these items out there, and had some confusion for a while thinking we were giving enemas when it was really a liquid suppository. Anyhow. Suppositories are typically made of some water-based solution, sometimes including glycerin. They might be solid and wax-like or liquid in form. They don’t contain much in regards to volume and their purpose is to stimulate the end of the rectum to get things moving out. Well, when you have a child that doesn’t have very good innervation in that region of their body, suppositories often are just not enough. So some families move to enemas. Pediatric enemas are fairly small in volume compared to an adult enema or high-volume enema. A pediatric enema might contain about 2-2.5 ounces (about 66 milileters; a recommended amount for children 2-11 years old). When you do high-volume enemas, you do 10ml per pound of body weight as an initial estimate. So a child that is 35# would be getting 350ml of fluid – compared to only 66 with an over-the-counter, pre-packaged basic enema. That’s a HUGE difference!

So when the small stuff fails – the diet, supplements, laxatives, suppositories, basic enemas… you move on to the bigger stuff. High-volume enemas. Even within this category, there are options. The two we’ve been looking into are the cone enema and a Peristeen enema. Both require inserting something into the rectal area and flushing water up and into the colon. Both require the child (or adult) to sit on the toilet for an extensive amount of time every day (some can do this every other day)… from a minimum of 30 minutes up to and over an hour.

We have started on this journey as of yesterday and it is interesting, frustrating, heartbreaking, and brings a slight feeling of being overwhelmed. We need to set aside about an hour each evening until we get this schedule figured out at least, to make this happen. Needless to say, we are trying to amass easy table-top activities to occupy a busy 2.5 year old! We are told by many in the Spina Bifida community that the beginning is difficult but the end is so worth it. Accidents can still take place of course even with a consistent enema program, but this management program will hopefully take us a step in the right direction.

While we would have a lot of other hurdles to get over in order to move Colten out of diapers due to a neurogenic bladder as well, not having any more poopy diapers with this child would be amazing!

New Braces and New Shoes

March 19, 2015 by Kate

At the end of January, Colten got new AFOs along with torsion, or twister cables, attached to AFO shoes. This has been a whole new production for us, just as his KAFOs were an adjustment as well. Over the past number of months, we’ve been using with great success the rotation straps from our local school district. The nice thing is that those also connected to one pair of shoes and had a belt system, so we were getting prepared for the torsion cables, but it’s still a bit more intimidating for Colten. The belt is very stiff compared to the strap system – it’s made of what I think is a metal band that goes about halfway around him, covered by leather and padded with wool inside. He’s not uncomfortable in it that we can tell, it’s just different and an adjustment. He fusses every time we get him into it. He wears his AFOs, plus this belt/shoe/cable system.

Below you can see the hip joint and where it attaches to the belt. There is a moveable joint at the hip and the ankle, although his AFOs do not hinge at the ankle, so I’m not sure that joint gets used much!

I am fascinated by these cables. When I have previously seen other kids with Spina Bifida using “twister cables” or other rotation devices that include a hip-to-foot bar and belt system, I have only seen cloth ones like he borrowed, or solid metal bars, similar to what was running alongside his KAFOs. The metal bars absolutely keep the leg in stiff alignment. So when I first saw the orthotist carry these cables in, and I saw how bendable the cable portion was, I got nervous! But, as I said, this setup is amazing. You can see the very thin, twisted metal cable inside the rubber sheathing here. When the distance between the hip and foot is decreased, such as in a squat position, the cables will still encourage the desired alignment, but give more flexibility. It’s easier for Colten to crawl and turn and twist in these than it was in his very rigid KAFOs. But when he is fully extended in a standing position or stepping, the cables are so taut that even if I try to turn his foot inward, I cannot!

More awesome-ness about these… You can see the red markings on the bottom connection point in the image below. This is his current rotation setting and height setting. These will allow for some height growth, as well as rotation adjustments. When Colten does NOT have his cable system on, his feet turn inward – even backwards at times. This causes stress on the knee and hip, as well as causes him to stumble over his feet when using his walker. The cable system, however, allows us to change the degree of rotation we want his foot at. So if his right foot turns in more, we can counter-adjust it so it rotates out. Let’s say he has a little bit of strength in his left for externally rotating his own leg – we could opt to decrease the rotation in that so that it might turn in slightly, but he could work at turning it out. Or, we could over-rotate both to turn slightly outward in the hopes that a new position of his legs would encourage different muscles to work. In time, could these muscles develop, strengthen, even work on their own to rotate his legs and feet? We don’t know, but the idea of muscle memory is a good thing. You can also see in this picture how the cable system is embedded right into the sole of the shoe. We chose to have the cable attached to the shoe instead of the brace so that in case the cable broke (which we’ve seen with other kids with SB, with different cable designs), he could still use his AFOs.

I love taking these progression photos! He’s grown so much since the first pair of AFOs at one year old. We’ve tried a few different things over the past year and a half, and are very happy with the new cable system. The AFOs are certainly something we don’t expect to change much over the years, but the KAFOs were not a positive experience for us in multiple ways. We are glad we have a break from those, for now at least. Colten picked out a tool design for this recent pair of AFOs, so if you see him, you can ask him to show you his “tools” and he will! Since yellow has been a favorite color of his now for a while (he loves his yellow wheels – his walker!), we made sure to include that in this recent pair as well.

Now if only I could have them make an Elmo pair of AFOs, then we would be all set!

One of the things we’ve been trying to work with Colten on is independence-style skills. When we were in the NICU with him, his physical therapist reminded us that it would be important to treat him just like our other kids… when we called them for dinner, he should get himself to the table just like his brothers. Whether he chose to crawl, walk, scoot or slide on his butt, we should push him to do things himself. I was reminded of this the other day when I had the boys’ breakfast plates on the counter. I left the kitchen only to come back and find that Colten had pulled his plate off the counter, lowered it carefully to the floor, and was pushing it across the floor to the dining table! So the next day I prompted him to take his plate to the table again so I could see how he did it. Here he is in motion, followed by a proud smile upon reaching his destination!

Continuing to foster this little 2-year-old’s independence, we moved him to his “big boy bed” recently as well, complete with Thomas sheets and all his nighttime buddies – Bunny Foo Foo, “Other” Bunny Foo Foo, Little Elmo and Bedtime Elmo.

Last weekend we attended the Dance Marathon at the University of Michigan. This is a year-long project for the involved students at U of M and it benefits both Beaumont Children’s Hospital and Mott Children’s Hospital – both of which we get services from! The funding – this year they raised over $460,000!!!! – goes mostly to the rehab and therapy departments, some special groups and items, etc… We had a lot of fun with our 6B family on Sunday… watching the evolving line dance, joining them for lunch, chasing dance floor lights, and meeting other families.

Just a little superhero fun at therapy. Hello Superman!

And more superhero cool with this amazing Spiderman hat from our friend Brynn’s aunt! We get compliments everywhere he wears this (which has been everywhere, all day, for a couple months now at least). Note the rainboots here… we were able to find a pair in our stash of boys clothes to fit over his AFOs so he could splash in puddles with his brothers last week. He managed to soak himself completely from the waist down and had tons of fun doing it!

Here is our addition to his belt to make it slightly more enticing for him (it’s not working)… a little Elmo ribbon glued around it.

And those are our updates for now! We just had his transition meeting for his special education team and we have a lot to consider in the next month or two as we decide what is best for Colten and our family in the next few years in regards to his education and therapies. Stay tuned, and enjoy the nicer weather! We sure are!!

They Said He Would Never Walk

February 22, 2015 by Kate

I feel like I’ve started more than a couple posts with this sentiment, each time Colten has achieved some level of stepping/walking, with one type of mobility aid or another.

We were so proud and amazed when Colten started cruising along furniture, then walking through his parallel bars, then walking with his walker. It was more than we ever expected and it came at a younger age than we ever dreamed. Really, walking wasn’t even on our horizon during therapy because it seemed that far-fetched.

And now, over the past couple of months, we have been able to watch this…
Colten Taking Independent Steps

We haven’t been pushing the independent walking, it’s simply something he keeps doing, all day long! He tries, steps, falls, laughs, and does it all again! And the kicker is that somehow he’s able to catch himself and stabilize when he tips forward. We aren’t sure how based on the muscles the therapists think he has / doesn’t have. But he is doing it and loving it!

Watching him reminds me of this quote often attributed to Mary Kay Ash (although it is scientifically inaccurate anyhow):
“Aerodynamically, the bumble bee shouldn’t be able to fly, but the bumble bee doesn’t know it so it goes on flying anyway.”

Because the rotation straps he’s been using (gratefully on loan from the ISD therapist) have worked so well to straighten out his feet and knees, one of his physical therapists requested his new AFOs include twister cables. I have never been so excited for new braces for this little guy!! We go Monday/tomorrow!

There are many reasons we’ve been away from the blog since October (yikes!), and we will catch up more with our readers soon. Thanks for coming back to read more today – we will certainly followup with a post after he gets his new braces. Have a great week everyone!

October is Spina Bifida Month!

October 19, 2014 by Kate

To celebrate Spina Bifida Month, we went to Myelo clinic a bit early! Well, not really. It is Spina Bifida Awareness Month, and we did go to Myelo clinic, but the two are unrelated. In honor of Spina Bifida Awareness month though, this handsome fellow has been circulated around the internet a bit so we thought we would share his awesomeness here with our readers too:

It seems as if at least once a week Richard or I remark about how glad we are that we built these parallel bars (and I’m extra thankful Richard ended up painting them… they look slightly less odd sitting in our living room). And they’re not just for Colten! Our other boys, especially Max, love swinging and playing on them, working on balance, flexibility and strength. Not the ideal activity for a living room but these bars have, without a doubt, given Colten an edge in regards to standing, walking, balancing, and now, with the addition of a ball tied to the bar, kicking!

So back to Spina Bifida Awareness Month… We’ve been posting facts every day on Colten’s Facebook page. You can read the first half of the month’s posts on our website here if you’re interested. We’ll post the second half at the end of the month.

Onto Myelo clinic… a few interesting things came about as we met with Urology and the PM&R team (Physical Medicine & Rehab – the doctor comes in with an Occupational Therapist, Physical Therapist, Speech Therapist, Orthotist, Wheelchair Specialist). Not much worth mentioning in regards to the visit with Neurosurgery (that’s a great thing!).

PM&R came first. Since Dr. Green has not seen Colten since he got his KAFOs, AFOs and walker, he had some showing off to do. He absolutely did not want to show anyone anything but we managed to squeak some steps out of him so she could see how he maneuvered with his equipment. His KAFOs are definitely helping to straighten him out but there still is room for improvement and some more help from different types of braces which we might explore later on (ground reactive). For now, they want to adjust the bar on the side of the KAFOs to better align with his knee joint, so they managed to squeeze us in tomorrow, Monday, so back to Mott we go again this week (actually, we’ll be at Mott once a week for about a month at various appointments). That’s about all on that front for now.

Urology checked in with us but we’ll see them again November 4 when Colten has his annual urology testing done. For now we chatted about a couple concerns: potty training and the issues on his bum. I asked what the chances of successful potty training would be with Colten, or when catheterizing might become part of our routine. The nurse checked his previous test results; with such low pressure on his bladder (a good thing to keep his reflex from causing issues), Colten actually leaks urine quite often throughout the day and most likely has no control over his muscles down there. In her experience, kids with similar test results are not able to potty train. They may be able to achieve some continence with catheterizing and medication to increase bladder pressure, or with surgery to increase the bladder size, or a few other options. Some people may need to stay in diapers for life regardless of some treatment options. While it’s hard to imagine my child in diapers for life, there’s a part of me that is a bit thankful we may not have to enter into the world of cathing! We know there’s tons of people who go down this road and it becomes second nature. But for us, it’s of course still foreign and hard to wrap our heads around. Either way, it gave us a slightly better picture of the future and what MIGHT be how things are down the road. As always though, we’ll see when we get there!

As for Colten’s bottom – it’s been a struggle since he was in the NICU. For two years we’ve dealt with skin breakdown on his bottom. Sometimes it seems to clear up; other times it is painful to look at. We are thankful he cannot seem to feel anything down there! The urology team is referring us to a wound specialist to have it evaluated. Extensive, ongoing skin breakdown such as this can cause additional problems as he gets older so if there’s something we can do to help fix this once and for all, or at least give him a better deal down there, we’re all for trying. So we are waiting on that referral…

Waiting and being super cute while doing it!

That’s about it! Outside of Myelo clinic, Colten is doing great! We’ll do more updates in the coming weeks as we hit more of these upcoming appointments: eye follow up next week; urology testing the week after. We will also work on doing a full update on the fundraising and Walk ‘n Roll for The COLTRAIN! Hope you all have a great week!

Diagnosis Day – Two Years Later

September 18, 2014 by Kate

Two years ago, September 18, 2012, I was 35 weeks pregnant, laying on an ultrasound table, hearing a doctor tell me words I didn’t understand. Words that scared us… spina bifida, myelomeningocele, neural tube defect, hydrocephalus, disabled, clubbed feet, lemon sign, neural tube surgery, brain surgery, shunt, Chiari Malformation, urology issues, bowel issues, development issues, NICU, too much fluid, unable to move legs…

Up to that point, we had planned on an out-of-hospital birth, just like our first two children, Parker and Maxson. But this baby was breech and after 32 weeks, still had not turned. We were instructed to get an ultrasound just to make sure everything was okay, and hopefully with some help, we would get the baby to turn. The ultrasound showed very different results than “everything was okay” and so we entered a new phase in the pregnancy that was completely different than anything we had experienced before. We now had tons of appointments over the next few weeks before Colten was delivered at the hospital via c-section. We now would have a baby in the NICU, instead of one that came home with us hours after his birth. We would have a child that would undergo more tests and surgeries in his first two months than anyone of us in our family had gone through in our own lifetimes.

But those three weeks between DIAGNOSIS and DELIVERY were absolutely the worst three weeks. Worse than watching our child go back for his back closure surgery. Worse than watching his head swell from hydrocephalus. Worse than watching him get rolled back for his shunt insertion surgery. Worse than watching his head swell again, as the first shunt failed within two weeks of insertion. Worse than watching him get rolled back for a shunt revision.

When the child is still in you, there’s the one side that feels you want to keep them safe inside and never let them out – it’s too scary to think of a baby undergoing all those procedures, pricks, prods, tests and therapies. Then there’s the side that cannot tell if he’s alright or if this is as horrible as the perinatologist described it. You cannot see your baby so you worry. I am pretty sure I cried just about every day of those three weeks, waiting for our little man to arrive. How would we do this? How could we raise a child with these medical needs and disabilities?

Now, two years later, looking back, I can tell you we raised a child with those medical needs and disabilities just like we raised his brothers. Sure, there are tons of extra appointments.Sure, we drive all over to appointments. Sure, we eat more fast food on the road going to those appointments than we ever did before in our lives. Sure, my work schedule fluctuates way more than it ever did before due to three therapy appointments a week and other doctor appointments worked in there. Sure, we buy this kid more socks than our others ever had because he’s ripping through them crawling all over the cement. Sure, we buy this kid more shoes than our others ever had because he’s ripping through THOSE crawling all over the cement. Sure, we’ve made and purchased some specialty items for the house that are fun by design and therapeutic in nature. Sure, we carry this child way more than our other kids at this age. Sure, we use strollers now way more than we used to.

But we also expect Colten to help the same way our other boys helped at that age. Take your dirty socks to your dirty clothes bin. Take “Foo-Foo” and put him in your crib. Take your plate to the table (yes, he can do this – he puts the empty plate on the floor, hand on top of the plate, and scoots to the table, pushing his plate along). Put the books back in the bin. Bring me a book to read you. Put your food back on your plate or in your mouth. Wipe your hands. Take your socks off. Go to the table. Brush your teeth. Fix your feet. Okay, that last one the other boys never needed to do 😉

Just shy of two years old (October 3rd is his birthday), Colten has continued to amaze us with what he figures out how to do. For the doctor that said he will never walk or have much use of his legs, this kid has something to say. Or rather, show… (links in the next few sections are all to YouTube videos)

He ROLLED by 8 months of age (typical for children is 3-6 months; I do not say this to compare him in a negative light – rather we are incredibly proud of how he has progressed not too far off the “typical” timeline; we are also not naive – he would not be in therapy 3x a week if he was meeting typical milestones. We also realize that our definition of standing and walking are not going to look the same for Colten as they do for another child. I would say, “he will never walk without any support – bracing or upper body support like a walker/crutches” – but really, with this kid’s determination, truly anything he wants to do I believe he will figure out a way; and he may never want to walk without any other support – that’s his decision, not ours).

He started SCOOTING / army crawling around 11/11.5 months (6-9 months is typical).

He PULLED TO STAND at 15 months of age (typical is 6-9 months, holding onto something).

He TOOK HIS FIRST STEPS WITH ASSISTANCE at 18 months (typical is by 12 months).

He started CRUISING ALONG FURNITURE by 19 months (typical is by 12 months).

He WALKED (with braces and a walker) starting around 20 months (typical is 9-15 months).

He started to STAND WITHOUT HOLDING ON (with braces on) by 21 months (typical is by 12 months).

And now, just shy of 24 months / 2 years, look at what he taught himself to do… Using his walker, he is stepping UP and BACKWARDS, and JUMPING! And that’s what I’m leaving you with today. From one of the worst days of our lives two years ago, to what this boy can do today, we are in awe. And we know we have provided him an environment that is supportive but more so, we have an amazing community of support around us that we could not have made it this far without. So thank you – thank you to our amazingly supportive family, both mine and RIchard’s, that help, support, inquire, and love us; thank you to our friends that have stayed our friends through all our chaos; thank you to the new friends we have met along the way and those we rekindled friendships with through similar struggles; thank you to the Oakland University basketball staff and community; thank you to the Sparrow Hospital staff that told us what we really needed to know and to the Mott Hospital staff for being truly incredible; thank you to all the out-of-hospital doctors that have worked with Colten; thank you to the many therapists – PT, OT, Anat Baniel Method, cranial-sacral, homeopathic; thank you to the many orthotics/equipment/rehab people that have helped us along the way; thank you to the U of M Treadmill Study crew for letting us be a part of it; thank you to the local communities we are lucky to have been a part of. And to anyone that still reads the blog 😉

Keep Calm and Roll On

August 2, 2014 by Kate

While the original slogan, “Keep Calm and Carry On”, was first brought to life on a motivational poster designed by the British in 1939 as they prepared for World War II, I am thankful to say that our slogan does not precede any wars, surgeries or the like. While this meme has been used in popularity for a few years now by various groups for their own motivational spin on things, we are viewing ours not only as motivation, but also as a reminder and as a little of a societal push for change.

The COLTRAIN Team Shirt: Keep Calm and Roll On (back) / Team information on front “pocket” area (The generic shirt has the KEEP CALM design on the front only)

I’ve mentioned in previous posts that we are doing our first Spina Bifida Association (SBA) Walk ‘n Roll, with the SBA of Michigan. This event takes places on August 16, 2014, in Waterford, Michigan. Every cause has walks, fundraisers, and various ways to support the overall mission, research, advocacy and support its national and state offices provide. The SBA and SBA of Michigan are no different and we are excited to be joining the walk this year and to be a large part of the planning committee (difficult, seeing as we’ve never been to one!). We already have a strong team of supporters coming to walk with us and a generous group of donators. We invite you to also join us (donation or not!) at our walk and/or donate. And if you want a little something extra for donating, we are selling t-shirts and bracelets with the slogan, KEEP CALM AND ROLL ON. We have team tshirts designed with both a slogan and an extra graphic for Colten’s team, The COLTRAIN, we have Spina Bifida Awareness bracelets, and we have generic KEEP CALM AND ROLL ON tshirts.

We chose the the wheelchair in motion symbol because we feel this is more descriptive of not only Colten, but of many of the people we’ve met that are in wheelchairs or mobility devices. A wheelchair is not about sitting up straight and still. It’s about movement, motion, mobility, and independence. Also interesting, there is a NEW handicap-accessible symbol being used in some cities (NY) that is similar to the icon we found and it will hopefully fully replace the current “static” wheelchair icon used around the world. It’s a small change but all this adds up to society seeing things differently.

Let’s not look at wheelchairs and get nervous, scared, or sad. Let’s look at wheelchairs and KEEP CALM. Let’s see that a wheelchair becomes a part of its user. It can, for many users, provide a way to move, be active, and get around. Even those in wheelchairs/accessible strollers that require someone else to push, or are electric. They still provide movement, mobility, speed. They allow people to get around, go places, stay on the move. They allow them to ROLL ON!

So when we see a wheelchair symbol – either the old static version or the new “in motion” version, and when we see someone in a wheelchair, let’s remember to KEEP CALM. Let’s remember that this is the symbol that allows so many people in our world to ROLL ON.

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Learn more about the Spina Bifida Association, the SBA of Michigan, and the 2014 Walk ‘n Roll

Casualties of Spina Bifida – Surgery #5

July 23, 2014 by Kate

When your unborn or newborn child is diagnosed with Spina Bifida Myelomeningocele, there are a number of things that tend to go along with it that you can somewhat see coming over the course of childhood and on into adulthood: hydrocephalus, Chiari II Malformation, clubbed feet, bladder and bowel issues, tethered cord. These things are told to you (usually/hopefully) by the various doctors you meet along the way and/or the books you pick up in the hopes of better understanding and preparing yourself for the road ahead.

[No one can really prepare you for how adorable your kid is though]

What you quickly learn from either your own child’s experiences or reading through the trials and tribulations of other families on this journey is that Spina Bifida doesn’t come in a nice little Bento lunchbox with its neat compartments all squared off, keeping each item of food just how I like it – separate and not touching. Spina Bifida is more of a tossed salad – made unique for each person born with it. While there will always be weakness and lack of sensation of varying degrees in areas of the lower extremities (or higher), and while there will always be bladder/bowel dysfunction of some sort, and while everyone will have a Chiari Malformation of varying severity, the rest is different for each person. Most but not all have hydrocephalus, a good number have clubbed feet, and while all will have tethered cord – not all will require surgery.

Then come the casualties of Spina Bifida. Breathing issues due to low tone result in children with trachs. Hyrdrocephalus and shunts can mess with vision resulting in patches, glasses or other eye issues. Hip issues are prevalent due to the low tone and alignment issues. Head shape issues due to hydrocephalus or premature birth or other tone issues. Scoliosis becomes problematic later in life. Kidney infections and failure are real possibilities. Other cysts are found along the spine. It just seems to be that once you mess with the spine, nothing is safe.

[While all that sounds sad and disheartening, this kid knows nothing of all that and is happy as a clam! Or Superman…]

This is one of the hard parts of SB – just not knowing what may come or when or how to prepare for it. Most people with SB will have countless surgeries throughout their lives. And Colten? He has now completed his fifth surgery at the age of 21 months. We are thankful that we have no more surgeries in our immediate future, yet are not naive enough to think he won’t need any more.

Colten’s surgery was on Monday and was a continuation of his last surgery in November plus another issue that arose since then. In November, Colten had a 1st stage orchiopexy done. He had an undescended testicle that they went in laparoscopically and started the re-routing process. After that surgery was over, Dr. Wan was clear that while usually he can do both the 1st and 2nd stages laparoscopically, due to all the shunt tubing coiled in Colten’s abdominal area, it was unlikely he could do stage 2 without opening him up. Then Colten had an inguinal hernia appear over the winter and while it was not causing him immediate issues, it did need to be repaired so thankfully we could do it all at once in this surgery.

[Summer fun swinging with big brother Parker]

The surgery was a success – everything was put back in place and repaired and re-routed and all that needed to be done. Colten has two decent incisions in his lower abdomen and another a little further down south. Monday was a rough day for him and he took a while to truly wake up from anesthesia. His surgery was about two hours – over around 1:15 PM. He was not discharged from the hospital until after 5pm. He then slept most of the way home from Ann Arbor and then cuddled up on me the rest of the evening. He slept most of the night, waking intermittently, then was up Tuesday morning. While a slow start to the day, he was ready to eat again and seemed to be much more himself. The biggest thing, and best, was that he really did not move at all. Kids are pretty self-preserving and apparently it was uncomfortable for him to move so he didn’t. If I sat him on the couch, he stayed there. If I sat him on the floor, he stayed there. He asked to be picked up when he wanted to move elsewhere but was content just sitting still. As of today, Wednesday, he still has a LOT of swelling and redness and was extremely hesitant to move. He did finally crawl a tiny bit – very gingerly. Good thing because he is supposed to stay low key for about 4 weeks, when we see Dr. Wan for a re-check.

And when I say “low key”, that means no physical therapy, no using his walker (that we JUST GOT!!!), no pulling up on his parallel bars, no tricycle, no crawling up the stairs, no exerting himself. He even wants him to lay off the mobile stander for a while. We’ll see how long this lasts…

Here’s a couple photos of Colten in his new walker – thanks to my sister, Kara, for snagging a couple shots of him actively walking!

On that note, Colten will be ready to roll again in time for the Spina Bifida Association of Michigan’s Walk ‘n Roll! We are holding this event that focuses both on awareness and fundraising, in Waterford, Michigan, on August 16, 2014. The COLTRAIN team is taking passengers (and donors) and we would love for you to join us!

Before closing out, a special thank you to my cousin Jerry for making Colten some amazing foot-holds for his tricycle pedals! We used these special pedals at the ISD and wanted to get a set for our own many trikes at home to see what might work for Colten. They can be easily moved from one trike to another and velcro the foot into the hold securely. We borrowed a pair from them to photograph and measure. Sending that information along to my cousin, a woodworking expert, he masterfully crafted a pair for Colten and now we can work on biking (well, after he heals up)! This is great exercise for his legs and hips. Next summer he should be eligible for a special trike that will allow him to pedal with his hands and his feet together. For now, we combined the pedals and another homemade PVC handle to create our own trike for him. So thank you VERY MUCH for the wonderful pedals cousin Jerry!

And a special CONGRATULATIONS to Max, who successfully learned how to ride a TWO-WHEELER last week! He will be 3.5 years at the end of July. We are incredibly proud of his determination in learning how to ride so early, and he is very excited about this new accomplishment…

New Transformer Legs

June 18, 2014 by Kate

At least that’s what Parker calls Colten’s new braces! As of our last post, we were waiting on some equipment – new AFOs, KAFOs, and a walker. Still no official walker, but great timing on the leg braces! I’m sure I won’t be so lucky every time he gets new braces, to get him to sit HAPPILY here next to all of his braces. But for now, this kid just loves his Momma enough to do it. Love him. Look how big he’s getting!

It’s hard to keep this boy still outside in the summer, so we don’t really try. He uses anything and everything to move around – crawling, his mobile stander, pushing his wagon. Today he actually was trying to walk while pushing TWO things, one with each hand. Really? Is he trying to make it more complicated for himself or just impress us? Mostly Colten crawls when outside – thankfully he has figured out how to lift his knees just enough so he doesn’t hurt them – he must have some feeling there we figure. But it means he’s dragging the lower leg of his leg and brace as he goes. This has wrecked havoc on his AFO straps. So much so that I had to break out the sewing machine and add a patch to get us through the last week before getting his new braces.

This past Friday we went for the new braces – with a stop on the way to Ann Arbor to meet a very generous and kind family from Canton, Michigan… I didn’t ask permission so I won’t divulge their names but their little boy has recently started preschool and decided he no longer wanted to use his walker (go boy go!) and took off walking! Awesome for him, and great for us – they happily loaned us his walker while we wait for Colten’s to get submitted by Macomb ISD and then approved by insurance. This could take months. We are always amazed at the generosity other families in the Spina Bifida Community are – we hope we can pass on some of Colten’s equipment to other families and kiddos when the time comes! I’ll talk more about the walker in a bit and share some video and pictures below….

Back to the braces. Colten was casted for these about 3-4 weeks ago and thankfully, there were no insurance hold-ups so we went in Friday for them. I showed the orthotist, Molly, how much he was tearing through the top strap and she took the AFOs back to their lab right then and there and replaced his new AFOs top strap with a Dacron strap. This is a much thicker, more durable strap material. We’ll see how it holds up! Colten’s AFOs are made by Cascade DAFO. His last pair had dinosaurs. This time I let Colten choose between a car/truck pattern and a dot pattern (because it looks like balls – and he LOVES playing ball!) – no surprise, he picked the balls. So we now have red/blue AFOs with a snazzy ball pattern for him. They fit great and so far, the better strap mechanism seems to be a good fit.

How they look after about six months (left) and brand new (right):

After making sure the AFOs fit, and trimming them where needed, Molly had me put longer socks on Colten (for others looking into socks for KAFOs, look up Rock-a-Thigh Baby; on Amazon.com you can get some patterns as “add-on items” for less than $5/pair; they have some cool patterns, solid colors, and most have rubber designs on the bottom for traction; I felt they ran small but Colten has big feet so maybe not – his AFOs fit in a size 5.5-6W shoe and he is wearing Rock-a-Thigh size 2-3 years). He was okay with this but NOT when she started putting the KAFOs on (Knee-Ankle-Foot Orthosis). The intern worked hard to distract Colten with the other KAFO design pattern – we picked a construction design and they recommended tan straps. Ugh. These look like way old, outdated medical contraptions:

Not cool looking at all in my opinion. It’s too hard to see the pattern unless you’re looking at his backside anyhow. Next time we might have to just do a solid coloring. So, the unhappy boy thankfully sat long enough for us to try these out on him and have her cut away a few areas so they would sit comfortably on him. Then we tried walking in them with his push wagon. Let’s just say it was incredibly discouraging. The KAFOs certainly feel like a step backwards in some regards – here is this 20-month old boy taking STEPS with support and we want to throw more bracing on him? Richard for sure got emotional when I sent him the picture of Colten in the braces from our appointment. There certainly is something disheartening about doing MORE bracing. But it doesn’t hurt to try them and see how they work.

The point of the KAFOs, per the PM&R doctor, is to help keep his leg straight. When Colten takes steps behind his wagon, in a walker or in our parallel bars, both feet often turn way inward – sometimes so far inward that they’re pointing backwards. Dr. Green hopes that by locking the lower leg into alignment with the upper leg via the KAFO, we will correct this. Why is this important? It’s all about alignment. If a child with Spina Bifida is going to walk, we want to try to provide them with a foundation strong and straight enough to walk on. The more contortions of the ankle, knee or hip, the harder it will be to walk. Now let me say this: we have no expectations for Colten and walking. We are elated that he is trying and interested in walking. We will encourage him to walk so long as he is comfortable and willing. At any point, should Colten choose to be mobile in other ways, we will support that. We have learned through many other families that even kids that walk early – and kids that walk later – many eventually opt for a wheelchair because it allows them to put more energy into school, life, athletics, social events, hobbies, etc… When a child puts so much of themselves into walking, it’s hard to have anything left for the rest of their world. So they make decisions for how they want to be mobile. And we are okay with that. Walking is overrated anyhow.

Well, Colten did NOT walk well in those KAFOs. He couldn’t seem to bring his legs around. I realized the next day as I looked at the braces that they are simply more cumbersom. They are heavy – a metal rod goes down the side to keep the upper and lower leg in alignment. There’s an entire extra section of bracing around the thigh. For a kid with weak legs and hips as it is, this brace is a considerable weight. So we dealt out some patience and very low expectations. And tried again in the parallel bars at home.

Want to see how he did? Here’s a video of him with his KAFOs on taking steps in the parallel bars.

So we continue to use them when we feel we get a chance. As I said, they’re cumbersome – he is struggling a little to crawl in them, but certainly is trying to figure them out. It’s not so much the crawling, it’s repositioning his legs and transitioning from crawling to sitting to crawling, etc… Hopefully the metal rods don’t tear up the floors! [ VIDEO of Colten crawling in KAFOs ]

After we picked up the new braces Friday we enjoyed some time in a playground I LOVE near the Orthotics & Prosthetics office – County Farm Park. If you’re even in/near Ann Arbor, with or without kids, this is an incredible park system. It has a decent trail system from what I understand – I’ve only explored a small part of it with the boys. It has a beautiful area of community gardens – you can see all the plots and what people are growing. It has a younger kids play area and older kids with some accessible options. A few swings (including two accessible ones), a cool sand area, and some other farm-like structures. I try to come here just about every time we are in the area because it gives the kids a break from the car–doctors office–car routine. I had all three boys with me that day and when I went to go push Max on the swing, Colten discovered new heights in the sand area. I still am not entirely sure how he got up into the first bin (I did see him get into the second one), but watching him do this stuff around the house, I know it was a massive upper body lift and lower leg pull. This kid has arms like Popeye!

Back to the walker. We are so excited that a local family loaned us theirs – we know Colten’s has not even been submitted yet by our ISD PT so there’s no telling how long this will take. But we wanted Colten to have an option at playgrounds and around the house and just anywhere. He seems eager to be upright and to walk. The push wagon is okay, but encourages a bent-forward position which the doctors try to discourage in kids with SB because it doesn’t help strengthen their back and can actually cause other back issues later. That’s part of why they do the reverse walkers for children. Colten has used this sporadically – we have taken it to a couple parks already, on a visit to my sister’s house, to physical therapy, outside in the yard, and of course in the house. He will do anywhere from 3 to 20 steps depending on his energy, what he’s after, what other options are available for moving, if his PT is pushing him and Momma has fish crackers, etc… We are so glad he has it and that he seems to like it as another option. So of course, some pictures and videos…

Walking with Walker and Doing Pop-a-Wheelies [VIDEO]

Today was Colten’s last contact with the EarlyOn program through Macomb ISD for the summer. We attended a Farm Day event where they had a small gathering of farm animals for the kids to see/pet/feed/run from. Colten was in his mobile stander which I think worked in his favor because the animals could only get so close to him. He thought the goat bleating was hilarious, but NOT funny when the goat came up to him. He loved the animals from a distance but wanted nothing to do with petting or feeding them. But he sure impressed some of the attendees there with his wheeling skills. I was quite surprised that Colten was the only child there with any obvious physical equipment (his braces and mobile stander). I know the ISD services a lot of different needs with kids – speech, behavior, feeding, fine motor, gross motor. It just surprised me that with 10-15 other kids, he was the only one that had a stand-out disability. Maybe other families with kids with physical impairments don’t care for these types of days because it can be hard to get a child with equipment around/near the animals, but the staff was wonderful. They brought a chicken to Colten for him to pet (he didn’t) and as the crowd dwindled, they moved the hay bale and let Colten wheel into the fenced area for the ducks/chickens/fowl/whatever (he went in and then quickly realized where he was and turned around and came out).

I didn’t actually think of that whole thing – him being the only one – until I started writing this post and thought back to the other kids. I’m glad that I am in a place now where we can go somewhere and instead of thinking, “Man, this sucks. I’m the only one here that has a kid this age that isn’t doing X, Y, or Z”, now I go to these events and think, “Yeah, that’s right, you watch how awesome this kid is when he spins 360s in his wheels!” or “We’re just enjoying the animals – this is great!” (without any real thoughts about Spina Bifida or a disability). That’s huge. As much as we are positive as can be with Colten, there is a lot of parental guilt, depression, frustration, anger, helplessness and more when you have a child with a disability. So to feel like we went somewhere and never once did I look at another kid and think, “Colten should be doing that too…” – that’s huge. HUGE for me.

So now, we move into summer! Previously I posted that Colten was scheduled for another surgery June 23 with his urology doctor. That surgery is now July 21. We have nothing major between now and then that I can think of and we are loving the warm and HOT weather summer is bringing. This means we’re out of the house doing a lot of summer stuff so if you don’t hear from us, assume all is well. We’ll be sure to post again around his surgery and when he gets his new walker. Hopefully he’ll stay out of trouble otherwise. As for the rest of our clan…

Parker finished up his last year of preschool last week. Max and Parker started their first summer school program this week (yes, we are cruel parents). This is Max’s first preschool experience. The boys will go twice a week – Max all summer, Parker only half – then he has some other cool summer camps he’ll get to go to. Richard is done with school for the summer and using the last couple weeks of having a sitter on hand to prep for next school year (a teacher’s work is NEVER done!) – then he’ll enjoy lots of summer days with the boys while I work.

Evel Knievel on Wheels

May 17, 2014 by Kate

I really wanted to take a video and post it but these things crossed my mind:
1. What if he actually tips?
2. How bad of a mother am I standing here watching him do this and VIDEO TAPING IT?
3. My mother will have a heart attack if she sees this.

Yesterday we were at a track meet (Richard coaches) and since Colten had not been in his mobile stander at all during the day, in he went. There was a lot of space to roll around and there was a BIG ramp up to the bleachers. Big. A small part coming off the bleachers, a 90 degree turn, and then a long ramp down to the ground. Oh boy did the boys have fun running and wheeling! And crashing. So much crashing. All Colten, in his wheels. He would get rolling down the big ramp and had to steer himself straight – but often would over-correct and since he’s still learning how to control turning his wheels, especially at fast speeds, it was quite a bang-up lesson. I’m glad I put bumpers on his front wheels!

We had few discipline issues arise though that are real and new… The first was Parker pushing Colten as Colten was wheeling down. This got a nice big scolding and some sit down time. I reiterate quite often these days to the boys that "Colten is in charge of his wheels, not you." It's hard to make them truly realize it, but how would they feel if someone else controlled their legs?! Parker did agree that he would not like to be pushed down the ramp from behind either so at least at 5 years old, it sank in. For the moment at least. Then Colten took it upon himself to wheel right into Max without stopping at all. And Colten got a talking to. He's not entirely safe with his wheels yet so we have to watch and teach him. Running into someone as a toddler when you're bobbing and weaving is one thing. Wheeling them over in a wheelchair is a whole other story. And hurts! This might take some time to instill.

Here's a picture of him wheeling out of a very, very long day at Mott Children's Hospital on Thursday:

So Thursday. It was Myelo Clinic day! (At this point, do you already know to get a cup of coffee, or do I really need to keep telling you this every time?! Cousin Pat, I’m sure you already grabbed yours!) This was a fun one for some reason. Well, I know the reason, all the friends we played with! I’m not sure why the other clinics haven’t been so “friendly” but everyone was very social this time. Doctors had to kick us out of each others’ rooms so they could do their visits! We spent a lot of time with a little boy named Gabe and his parents – they were at their first clinic at Mott. They’re from the west side of the state and are moving most of their care to Mott. We had a lot of fun (okay, I had a lot of fun) swapping stories about our kids and experiences. I’m so glad we got to meet them! Part of the fun of the day started in the waiting room – there were a couple little girls in wheelchairs, another girl using forearm crutches (that Colten kept trying to steal), another girl in a reverse walker, and Colten in his mobile stander. Then a few kids walking around or being carried. It was a pretty young crowd and they were enjoying all the activity of being around each other and chasing each other.

Our clinic was the afternoon clinic, at 12:30pm, but we were at Mott at 9:00 AM because Colten had to do a Quick MRI. This is a non-sedated MRI but of course, you have to lay still. I might actually opt for sedation next time. Oh wait, that’s just for him?! Oh. Yeah, I might still give it to him. They said it was only a few minutes. It felt like 20. I think it really was less than 5 though. It was just of his head and they wanted to get a quick visual on his ventricles and Chiari II Malformation. So imagine you are 19 months old. Your mother lays you on a cold, hard table and puts your head into a trap of some sort, puts plugs in your ears, big earmuff things over your ears, sandbags by your side, swaddles you into a blanket, then pushes you into a big tube. How would you feel?! Colten felt the same way. He got out of the swaddle and I had to lean into the tube and hold his hands down while he pretty much kicked my face with his legs until I could figure out how to position myself to hold everything down from a very awkward angle. Yes, super thankful that he CAN kick me, but the upper cut to my jaw did NOT feel good with his tennis shoes on. He didn’t seem to hold it against me though and snuggled up close when he was done.

Then we had time to kill. We spent some time in Mott’s wonderful Family Center, then went up to the indoor playroom on Floor 8. In all the times we’ve been back to Mott, never once have we returned to the NICU. Other families have always talked about going back and saying hi to nurses. I never did, not because I wasn’t thankful, but I thought – seriously? They have to see SO many patients, and we were only there 2 weeks. They are not going to remember us! When I checked in at the playroom, the desk assistant asked if he was a NICU graduate and if we wanted to let the nurses know. I told her what I just put here and she asked the last name. She said she remembered us (or at least was just being nice!) and we should think about it after we were done playing. So we did, and we ended up running into one of our favorite nurses, Dana, who now has a sweet little 4-month old! It was very nice to see her!

Having fun in the play area… Seemed like a fitting phrase!

After getting lunch, we rolled up to the Myelo Clinic. Colten spent a huge part of the morning and early afternoon in his mobile stander and LOVED IT. I have to say, after such a rocky start when we first got it, after about a week, he never screamed getting into it and actually has fought me a couple times when I’ve had to take him out of it. This is HUGE because if he can tolerate being in it, it will help his bone density improve, help him strengthen various muscles used in standing, and keep him familiar with maneuvering a wheelchair.

He LOVES playing basketball in and out of the mobile stander! Getting him ready for wheelchair sports early!

It is so very clear to us now that a wheelchair is often inevitable for many children with Spina Bifida. We know at least two families in Michigan that have children that walk – even walk without bracing (that's you, Gabe and Gray!), and by the age of about three or four, even they opt to provide a wheelchair as an option. It provides these children with more speed and independence. Even though these little superstars can and do walk, even jump and are starting to run, they tire so quickly and easily. There are certain cases where a wheelchair can help them keep up with peers and maintain independence (versus a stroller). So for Colten, who will require bracing for life and who knows what other mobility "tools" (walkers, crutches?), a wheelchair will always be an option. And having used the Bumbo wheelchair and now the mobile stander, it is something far less scary for us. It's just part of him and how he moves. And he moves in a LOT of ways!

Myelo clinic started late for us and ended late but we saw 8 departments in that time… First came the neurosurgeon, Dr. Ramnath. He is the one that does clinic at Mott. While we wish one of "our" pediatric neurosurgeons did clinic, we have been incredibly pleased with Dr. Ramnath so far. He asks good questions, provides very thorough and educational answers, and keeps it all in check with his humor. The MRI scan looked wonderful – small ventricles and no other changes of concern.

Next came in the troop of departments all at once: PM&R (physical medicine and rehab), Physical Therapy, Occupational Therapy, Orthotics, and the Wheelchair Specialist. This one did NOT go as I expected and I'm still not sure how I feel about it. Before I get into what they said, I need to update you on the amazing things Colten is doing.

HE CAN WALK BETWEEN PARALLEL BARS. This is huge. He's not leaning forward or backwards, just side-supporting with his hands. He's taking RECIPROCATING GAIT steps (aka, walking! one foot, then the other), not just cruising sideways. He can TURN HIMSELF AROUND and walk back the other way. He makes attempts at WALKING BACKWARDS. Seriously. Someone totally forgot to tell Colten he wasn't supposed to do any of this!!! Watching him progress a little every day, I sometimes forget how exciting these milestones feel. But as I just typed that, I got a little teary eyed!

Here’s a video of him in the parallel bars [ http://youtu.be/cOmyYbApokE ]

Awesome right?! By the way, those cost us less than $40 and less than 2 hours of our time. And the other boys have found great fun in using them for gymnastics-like acrobatics!

So back to the PM&R entourage. Dr. Green (PM&R), the orthotist, the PT and me discussed his walking and alignment extensively. Their concerns (which were not concerns about 3 months ago when I saw Dr. Green last) lie in that his legs turn in. They aren’t positive if this is a knee-based or hip-based rotation, and depending on where the rotation is originating from, makes the case for what piece of equipment to try next. At one point, Dr. Green wanted to do AFOs, KAFOs and twister cables. The orthotist said she doubted insurance would cover three. So she took off the twister cables. But why KAFOs??? Why MORE bracing?? He is doing AWESOME with what he’s using?!!! She thinks he’ll do even better. He won’t trip up over his feet and the KAFOs MIGHT help straighten his legs so he’s stepping properly. If the KAFOs help train his mind and his body to straighten out, then he may not need them very long. Or, the KAFOs might not help if the rotation is coming from the hip, In that case, she would then want to brace HIGHER up. Grrrr. From my perspective, he is TAKING STEPS, I don’t give a CRAP if he’s rotating inward or outward! HE IS TAKING STEPS! ON HIS OWN. AND LOVING IT. I fear that putting him in bulkier equipment might make him straighter but also might make him more immobile. However, knowing Colten, he’ll figure out how to adapt just fine and will go about his business. The good thing is, she realizes he won’t want to be in the KAFOs all day, hence the new AFOs (he’s outgrowing his previous pair). He’ll use the KAFOs most often during therapeutic activities at home or at PT sessions. The rest of the day the AFOs will suffice. She did encourage us to keep the AFOs most of the day for protection. There are so many reasons for this: because Colten cannot feel much, if at all, in his lower legs and feet, he could get them in a compromising position and not feel the strain of over stretching or being on something sharp, or even another kid falling on him. Because blood flow is reduced, healing time is slow and can bring about other issues if there is an open wound. He leads a fairly protective life currently. We avoid having him crawl over nails and things that might hurt, but we cannot do this forever and eventually he will need to learn to do leg and feet checks every day. Sometimes even the braces cause sores that lead to extreme issues so being aware of his lower extremities is critical to his health.

I will take Colten back to Ann Arbor next week for his fittings for his new AFOs and KAFOs. This is a sample of what some KAFOs look like. They are all designed with the wearer’s needs in mind so there are tons of different styles. His will probably be pretty similar to these though. Full AFOs on bottom, hinge-able knee (yay) so we can lock him up to keep him standing and bearing weight – yet unlocked for when he’s trying to be more mobile in them, and support around the thigh.

I told the entourage that we were participating in a walker clinic through the ISD and they actually said very little. Not sure if they were upset that I wasn’t going through them, thinking he wasn’t ready, or just trying to sort through the leg bracing stuff. Whatever! We’re going next week and we’ll see.

One of the social workers popped in next to make sure all was peachy and then we waited for a while on urology. Our doc wasn’t there today (Dr. Wan) but we saw his nurse, Jill. We’ll see Dr. Wan in June and Colten isn’t actually scheduled for more urology test until October so this was more for any other catchup and I did have a few things to cover with her. The first being Colten’s daily medication. We, as a family, are just not good with every-day pill popping. We forget, we don’t care, we would rather not. We do it when we HAVE to. Colten’s bactrim is a preventative measure. He’s never had a UTI (he has bilateral kidney reflux, grade 2) and we are SO thankful for that. We also haven’t given him bactrim in a really really long time. We just kind of fell out of habit of it. He hated it, it doesn’t make it easy to give a kid medicine every day when you’re not sure he really truly needs it, and so we backed off it. I talked with Jill at length about it and ideally, of course, he would be on it. Yes, it’s still preventative but there are so many issues and long-term problems that can come with repeated UTIs, especially those related to kidney reflux, that if we can spare him a lifetime of kidney issues, it will be one less thing to deal wiith. Sigh. Ok, we will try to be better about it. We will discuss it with Dr. Wan in June or October again. It’s possible they could fix the reflux if they have to go into that area to do other things but sometimes fixing the other things fixes the reflux so… yeah, no straight answers. I hate that, really. It’s the one thing that irritates me most about Spina Bifida. No straight answers ever. It’s always a waiting game with so many unknowns. I like answers. And plans.

That was the end of Myelo clinic! OH BUT WAIT, WE AREN’T DONE!!! We had one more appointment scheduled for that day. Because we’re gluttons for punshiment. And while I HATE cramming so much into a day, it’s hard to drive down there often so I combine what I can when I can. And we had to get a followup for his eye appointment. I packed the little man up in the car to drive over to the Kellogg Eye clinic and he was OUT. Didn’t even wake when I took him out of the car and carried him in the wind. We sat down and rested until called back…

I had almost cancelled this appointment because I felt his eye was doing SO much better, I wasn’t perceiving any inward driftward. Colten woke up for the exam and cooperated quite well for just waking up and being to so many appointments already. He still has some slight drifting they want to continue watching, and apparently, even if he had not been seen for this issue, he would’ve been sent to Ophthalmology anyhow because for children with shunts, they like to monitor their optic nerve. Who knew?!

Alright. I think we’re about done. Colten is sleeping better these days (the sleep-study came back crystal clear!), continues to battle ear infections more often than we care to see, but is otherwise a healthy, happy, mischievous, cuddly 19-month old. Who loves bagels from Biggby but could barely hold his head up…

We are loving the warm weather, bike riding, running around outside, and are still really enjoying living so close to family. That has truly been the highlight of the past few months!

The Hate/Love/Hate Relationship with the Mobile Stander

April 30, 2014 by Kate

Colten got his mobile stander last week! We’ve been working on this for a few months now and were anxiously awaiting this piece of equipment. But MAN is it a Hate/Love/Hate Relationship. Let me break it down…

First mobile stander – hates getting into it and then hates getting out of it! Which means he LOVES being in it 🙂

Colten HATES getting strapped into this. He LOVES wheeling around in it. He HATES when I take him out if he’s not done!

I HATE having to get him strapped into this. I LOVE watching him wheel around, go fast, explore, and be mostly independent. I HATE that he’s “stuck” in this position.

Colten HATES that he cannot get up the stairs in this. He LOVES going fast down driveways. He HATES that he cannot reach anything low to the ground.

I HATE that he can roll away so fast. I LOVE that he can roll away so fast. I HATE that there isn’t a guide handle on it for us to steer/push/pull him.

Okay, ready to watch him in action? Here’s a video of Colten wheeling, spinning, turning and loving it… [ Watch: Mean, Green, Rolling Machine ] Sometimes I wonder if I should be putting a helmet on him when he’s in this!!!

I really could go on and on with this. There are a lot of things to truly love about the mobile stander. He is wheeling around upright while bearing weight on this legs. This is awesome because he loves to wheel around in his Bumbo wheelchair but this gives the added benefit of putting him in a standing position. Standing means bearing weight, even if the straps/cushions are helping to hold him upright. Bearing weight means building bone density. Because of a reduced use of their legs, less walking/weight-bearing, and lack of feeling throughout their legs, people with Spina Bifida have decreased bone density. This was the whole purpose of the treadmill study we did, remember? I know it only ended 6 months ago but man it feels like FOREVER ago! The stander puts him upright, at the height of other kids about his age. The footplate he stands on is not that high off the ground so he can now access things more easily at that height. For instance, he likes to pull up to stand at our easel and draw on the chalkboard or whiteboard. For a while, all he could do was stand there and look because it took so much effort for him to stand, he could not let go of either hand. Then he got to where he could hold himself standing with one hand and draw with the other. This stander gives him even more flexibility. He doesn’t have to concentrate so much on standing, just enjoying the play experience. We had him outside at the sand table – same thing. He could just enjoy without the added stress of stabilizing himself. We used this feature today during the OT part of his therapy session, so he stood up for about 25 minutes while working with his therapist! Taking the wheels off means he is stuck in one spot unless I wheel him away (the stabilizer wheels are locked while standing unless I need to move him, then I unlock them). This is good because it helps him focus on just standing – HUGE for strength building and bone density.

Using the mobile stander without the “big wheels”.

That being said, I do think it’s important for him to work on pulling to stand up and learning to stabilize – those things build strength and maybe even help with neural connections and sensory input. So he’s not in the stander a lot. Actually the physical therapist wants us to work up to one hour each day. Not sure if they’ll increase it after that, but we all agree that his mobility out of the stander is very critical and very impressive. We don’t want him to lose that by any means, so we won’t be using the stander all day! Right now, we mostly use it outside for 20-30 minutes at a time. I imagine we’ll use it for longer stretches when we go places like the zoo. But figuring out a handle for this is a must if we’re going to take it out and about. (If you have any ideas, please share! Roping doesn’t work – not enough sturdiness to steer it.)

I realize I haven’t posted since March so we do have some more updates… Might want to go refill your coffee!

Don’t worry, this cute kid will wait while you go get more caffeine…

Colten started into the new programming through EarlyOn, via the Macomb Intermediate School District. Once he turned 18 months, he now goes to one of the Infant Preschool Program schools twice a week. One of the days, he is part of a group “class”. This lasts for just under an hour and is a “high functioning” physical needs class. There are three children in the class total – 2 girls and him. The other girls are about 2.5years and the other is almost 2 – and she also has spina bifida myelomeningocele! We actually know this family through our Beaumont therapies and some Facebook support groups, so this has been nice for both Colten and me 🙂 In the class they do some gross motor play, fine motor/food exploration, and active songs that encourage both fine and gross motor movements. On Colten’s second trip to the school during the week, he gets 1-on-1 physical therapy. Colten also still receives physical therapy once per week at the Beaumont Children’s Rehab center. So yes, we are usually at 3 appointments/week and I had to do some schedule re-arranging to maximize my work days so they do not conflict with his therapies as much as possible. Another reason why I am thankful most days that I work for myself!

Just this week at physical therapy, Colten showed up some cruising skills! The last time we intentionally worked on cruising was back in February when Colten tried out TheraTogs for the first and only time (could be helpful or annoying; about $1000, not covered by insurance). He needed a lot of assistance from his PT to cruise along a bench but he did. And how does he cruise now? Without any help from his PT, just some delicious bribery… This video is of him at home today. He was already pretty tired out from an hour of PT/OT – 30 minutes of that was also spent standing in his mobile stander so his legs are exhausted, but look at him go!

[ Watch video of Colten, Cruising for Fishies ]

And a while ago I mentioned how he climbs stairs, then I don’t think I ever grabbed a video. Finally we did! I didn’t see if I posted this in the last blog entry, so if this is a repeat, sorry! [ Watch video of Colten climbing stairs ]

Moving forward, we expect May and June to bring some “stuff”. He goes back to the Myelo clinic at Mott in May, where we see all his specialists during a 3-4 hour appointment. He will get an MRI done that morning as an annual check. His last MRI was shortly after he was born. What are they looking for? Anything. All people with Spina Bifida, as we understand it, have what is called Tethered Cord. Due to the surgery on the spine, scar tissue builds up and in order for the spine to properly lengthen, or the spinal cord, the scar tissue needs to be removed, or detethered. While tethered cord supposedly occurs in all cases, NOT ALL CASES REQUIRE SURGERY. Surgery is only required if/when the tethering causes issues. Most often these are neurological issues (hello, your spinal cord is being yanked!) but from what we have read on other SB family blogs, it can sometimes take a while for parents and doctors to agree about the best timing of this surgery. I am not anticipating this is any issue for Colten at this time as he seems to be progressing quite well. Just trying to explain part of the reason behind annual MRIs. I believe that the MRI is of the spine and head, and so for the head, they’ll be looking at the size of his ventricles and making sure his shunt is working as expected. They can also examine his Chiari II Malformation from this MRI and see if it is still mild. I have heard of a few families seeing marked improvements in their child’s Chiari II Malformation in the first few years so it will be interesting to see if his has changed any. Given how much Colten has grown in the past six months, I think he’ll be casted for a new pair of AFOs, and if that’s the case, we should be able to get those maybe in June.

Colten is also attending a walker clinic through Macomb ISD in May. A representative from the equipment company will come to the school and evaluate the children and see if they’re ready for a walker and what kind/size/etc… So far, Colten has not had much desire to use one of these walkers and just refuses to hold himself up when we give him the chance to try one. Here’s what they look like (pictures used with permission) – below. This is Adam John Luke, another little man with SB doing some amazing things. He kind of looks like Colten (but a little older) – they are almost exactly a year apart! Adam uses some equipment that I anticipate Colten will use down the line as well, so I like to keep up with this fellow’s daily antics and his mom gave me permission to share some pictures of Adam in his walker. The reason (as far as I understand) that the walker sits behind the child instead of in front, is to get them standing more upright, not leaning forward. I think it’s also harder for the kids to control it when it’s out in front – it’s more likely to push too far ahead of them, then they fall. They seem to have more control when it’s behind them, but it does take some effort to stabilize and pull it forward. There are various models we’ll probably try out but this is the type I see most often in the SB community for children…

Adam John Luke using his Kaye walker

We are pretty sure Colten is going to be ready in the next 3-6 months for a walker, if he’s willing to use it! He can already take steps pushing something, like this great and heavy wagon we got from a local mom’s sale! This is the same one Colten used at one of his previous physical therapy places and was what he used to take his “first steps” with. We were excited to see someone selling theirs! [ Watch video of Colten walking behind push wagon ]

And just like any other 1-1/2 year old, he also knows how to use things to get into trouble. Here he is STANDING in the wagon so he can get up higher to get the chalk!

Standing in the wagon. Not really safe at all. Kind of therapeutic though! Good balancing Colten!

While this makes us nervous, it takes incredible balance to stand in this thing and not have it roll out from under him. Kind of impressive in a evil-knievel-therapy kind of way… Although now that I look at the picture closely, I see the one wheel is being held in place by the easel. Smart kid.

Going into June, we’ll be back at Mott for another surgery. We are hoping for a somewhat quiet, fun-filled (do those go together? no, not with 3 little boys!) summer in July and August though! Richard will be off from teaching of course, unless he picks up summer school teaching, the boys will be out of the daycare they’re in right now, and we have some camp programs lined up for Parker and Max that should be exciting for them! We’re spending some of our free time now exploring a lot of area playgrounds. We have a list of supposedly accessible playgrounds we are checking off one by one. We try to find playgrounds with ramps so Colten can either go up in one of his “wheels” or easily crawl/climb. We love ones with rubber flooring best because he HATES crawling on bark chip. I don’t blame him! There’s a great list of accessible playgrounds on NPR’s website and we are adding new ones to their database as we find them. It’s a great tool, but very incomplete for Michigan. The best ones are “all abilities” playgrounds, where they’re very inclusive and have play things for climbers, rollers, walkers, and crawlers. They are usually also sensory-based with sound areas, texturized areas and sometimes even smell-based items! We found a GREAT one in Northville at Cooke School this past weekend. Not that Northville is local for us, but we were out that way (Richard took Parker to LegoFest!).

Max enjoying one of the all-abilities playgrounds. This one was in Northville at Cooke School. It was AWESOME! Pretty sure that school must house a full special needs program because this playground had it all, even FOUR wheelchair swings!

Boulan Park in Troy had two big structures with ramps. The entire play area had rubber flooring, too. However, there wasn’t much for Colten to do once he got UP the ramp, so we took him out and let him crawl around instead. Although he loved zooming DOWN the ramps. Helmet?!?! Yikes.

In August, we are participating in our first Walk-n-Roll, an event that supports the Spina Bifida Association of Michigan. We’ll post more about this later but if you want to learn more about joining our team and/or donating, please visit our Walk-n-Roll page! While we hope to raise some moola of course, our other focus is getting our great team of supporters to come with us to the event and have a good time! Hope you can join us!

And some more great news to close out this forever long post…

MAX is finally potty-trained! I’m sure he wants the entire blog-readership to know that 😉 He can be embarrassed later. We’re excited because he’s been stubborn and we’ve been lazy and we finally just did it over spring break. Whew. He is also getting quite good at riding our little balance bike!

PARKER learned to ride a TWO-WHEELER! No training wheels for this kid. He went from the balance bike to his big boy bike. I only needed to “help” for about 15 minutes and he was off and riding. We’ve enjoyed some nice rides just the two of us. He went for a 3-mile ride his first day and a 4-mile ride two days later. He loves loves loves it and feels like SUCH a big boy now.