Surgery #7: Ear Tubes (again)

March 9, 2017 by Kate

Surgery is not necessarily something we look forward to, especially when our children have to undergo it. However, we have been battling ear infections, repeated ear drum ruptures (twice within one month), and a tube stuck in an ear canal for at least six months. We are ready to start again on a “clean” slate.

Colten had bilateral ear tubes put in when he was about two and a half years old. They worked great. His ear fluid is very thick – the doctor at the time described it as “wet cement”. So he would get fluid, infections, and fluid would never clear. Then he would get more infections. Repeat repeat. Tubes changed that and were great for him! However, ear tubes are temporary (I did not know this!) and fall out on their own within six months to two years. Usually. Unless you’re Colten and you simply like to defy the odds.

A while back we started to see dried blood every so often in Colten’s ears. We have an otoscope at home – that thing doctors use to look in ears, noses, and throats. With four kids, it’s helpful to know if a cranky child’s mood is from ear infections or just them being cranky. Saves us on unnecessary doctor visits! Anyhow, we could see some dried blood in his ear. At first we didn’t think much of it, but it repeatedly seemed to creep up, and sometimes he would complain of ear pain, but usually only one time in a rare while, then nothing for days or weeks. When looking in one time, we realized that his one tube was stuck in the ear canal, embedded in a chunk of wax. SERIOUSLY?! It is possible the tube was scraping in his ear canal somehow, causing the pain, scratching and bleeding, but we don’t know.

Of course, when we called the ENT and said, “We think one of his tubes is stuck in his ear canal”, the medical assistant relayed that “that is not likely.” Yeah, he’ll show you. Sure enough, we went to see the ENT for his next ear infection so we could have him re-evaluated. And what did he find in the ear canal? A tube. Stuck in wax. It was lodged so close to the ear drum though, the ENT did not want to extract it without anesthesia. So we had to leave it alone. Colten then made sure his ears proved themselves, and continued to get infections and fluid that wouldn’t go away. Then his ear drum ruptured. Twice. In one month. Within days of finishing the antibiotic for the first rupture and infection, it ruptured again. At this point, we already had surgery scheduled and thankfully, the rupturing did not deter that from happening. The ear drum heals itself quickly!

So here we are today for surgery #7. We are not at our typical children’s hospital. We are at one of the surgical centers this ENT works out of. There are definite advantages to using a children’s hospital for our other procedures, especially when a child needs anesthesia. Here at McLaren Macomb, Colten and I had to part ways at the door before anesthesia. The last time Colten had anesthesia at our children’s hospital, I was in the hospital bed with him until he was OUT. He gets a lot of anxiety with medical stuff (can’t blame him) and he kept telling me yesterday and today, “I don’t want to go to sleep. I don’t like the mask. It hurts my throat after.” Nothing like tugging at my heart strings! Even though he gets Valium/Versed ahead of time to help calm him, it does not appear to do enough. He used to get very loopy with it when he was younger, but not as much anymore it seems.

Back to the surgery. The doctor already came out and gave me the post-op consultation. They extracted the embedded tube from the right ear, put in new tubes in both ears, and removed his adenoids, which were very large and infected. Adenoids can get in the way of the eustachian tube draining properly, so we are hopeful that their removal, plus this set of tubes, might get him on the pathway to better ears, and that once these fall out (and hopefully don’t get stuck), that maybe he will not have more recurring issues.

Now I am back in recovery with him, then we’ll head home for ice cream and popsicles all day. And with his dad and brothers all off school due to these vicious winds and resulting power outages, we might just have a lazy day of popsicles and Netflix with the kids! Thankfully, our power is going strong. Hope all of you without power get it restored soon. Stay safe!

Why Can’t I Stand Up Like My Brothers?

March 6, 2017 by Kate

It’s something we read about from day 1 – the questions kids with Spina Bifida ask when they’re old enough to realize that everyone doesn’t have Spina Bifida.

First movie he sat all the way through – LEGO Batman!

I remember reading other parents’ blogs or posts on social media about their child asking things such as, “When will my Spina Bifida get better?”, “Will I always have Spina Bifida?”, or “Why can’t I do ‘x’?” We knew the day would come when Colten started asking those questions. I’m just not sure it is anything you can really prepare for. You have no idea what goes through a child’s head, how they think about things, or how they might process it all. You never know when they might realize something is different – and not different as in “everyone is a unique and special snowflake” – different as in, not able to do something that seems easy for everyone else. Or different in that you have devices and things that others do not.

Enjoying some unseasonably warm February weather in Michigan!

Over the past couple of years, there have been a few occasions where Colten has remarked how he’s not as fast as his brothers. At his age, it’s easy to calm those tears with “you’ll get faster when you get older” or “well, your brothers have longer legs, they’re older, etc”. Last summer we noticed a few times where our kids and the neighbor kids were out playing, running around. Colten was right in the mix. Then I looked out a few minutes later and saw him sitting by himself on the porch while the other kids continued their game. My heart broke for him. I opened the front door and asked, “Colten, is everything okay out here?” He responded, “Yeah Momma, my legs just needed a rest. I’m okay!” At that moment I realized it probably breaks my heart more than his at this age.

Now, over the past couple of weeks, Colten has commented more on different things. I think it’s becoming more evident with a little sister around, too.

Showing off their new shoes, hand-picked by their Grammy!

One day as I was tossing an old pair of his AFOs into a bin, he commented, “Now we can save those for Sophia!” So then the conversation that follows tries to teach him why he needs braces, and why Sophia does not.

“Do you know why you wear braces?”

“Because I have Spina Bifida.”

“Does Sophia have Spina Bifida?”

“No…”

“So does Sophia need braces?”

“No…”

A while back he said, “When I’m older like Parker, I won’t wear braces anymore.”

“Well, I’m not sure Colten. You might wear braces. Do you know why you wear braces now?”

“Because I have Spina Bifida.”

“And what do the braces help you with?”

“They help me not fall down. And so my legs don’t get so tired.”

“Right! They also protect your legs from scratches and things you cannot feel on your legs.”

Those have all been pretty easy. Pretty simple. Then when he started school, I figured the fact that he still is in diapers would become an issue, and sure enough, he noticed. However, it wasn’t the issue I thought it would be. He came home one day and said, “Mom, why do all the kids in my class wear underwear, except me?” So I explained how the bladder usually works, and why it doesn’t work like that in most people with Spina Bifida. I asked him if he would like to talk to the doctor about making it so he could wear undies like his friends and brothers. He replied, “No, I just want my whole class to wear diapers. Even my teachers!” 🙂

What February usually looks like in Michigan. Doesn’t stop these two from wanting to swing!

Then last week he said a couple times as he would get up off the floor after getting dressed, “Why can’t I stand up like my brothers do?” The first time I wasn’t sure what he was saying and blew it off. Then he commented on it again and I asked him to explain. When Colten stands up, he has to go face down on all fours, use his hands to balance, and then he pops his bottom up and his legs up and then stands up. According to Colten, his brothers just put their feet out in front of them and stand up without really using their hands in any way. It took him multiple explanations for me to understand what he was even saying, and I wanted to reply, “WHO THE HECK CARES?!” but clearly he cares!

I wasn’t quite sure how to truly address this besides our typical standby explanation – everyone does things differently. We have found that this simple concept often is perfect at his age – and even his brothers’ ages (6 and almost 8).

How come he can climb up that? Everyone has different things they learn to do, and different things they’re good at.

Like Max. He climbs everything and anything.

How come he wears glasses? Some people need glasses, some people don’t.

Like Parker, who got his first pair of glasses last month!

How come I use a wheelchair sometimes? Some people need a wheelchair, some people don’t. Some people need a wheelchair all the time, some people only use it some of the time.

How come that person only has one leg? Some people are born with only one leg, or one arm. Sometimes someone might get a bad boo-boo on their leg and the doctors have to take it off so the rest of their body doesn’t get sick. Sometimes they wear a prosthetic leg, sometimes they don’t.

How come that kid doesn’t know how to read yet? Everyone learns things at different ages. Some people learn to read really young, others do not. Some people are better at drawing or math, others are better at reading or science.

How come that boy has long hair? Some people like their hair long, some people don’t. Some people like to have no hair, and some people lose all their hair.

USUALLY, this simply concept of people and differences appeases them from what we can tell, and it reminds them that every person is different and has different abilities, features, and needs. No big deal. Hopefully.

So Colten, you stand up differently than your brothers because that’s what works for you and that’s how you’ve learned to do it. In the end, it doesn’t matter how you do it, it just matters that you’re doing it.

Our post just prior to this one, many of you visited and noticed it was locked. It contains some personal information related to an upcoming slate of surgeries Colten will undergo in June. Due to the nature of the information, we password-protected that post so our closest family, friends, and supporters would only have access to it. If you feel you fall into that category, feel free to contact me for access to the post.

Protected: Bowel & Bladder Surgeries (Password Required)

February 20, 2017 by Kate

“Bracing” for the Worst

May 11, 2016 by Kate

I don’t want to scare you by the title. All is good here – really! But that’s what came to me because in my head, the past seven months or so has been me working really hard at ruling out everything I can that was pointing to a tethered cord surgery. And in our minds, tethered cord surgery is one of the “worst” in that it is surrounded by fear for us.

Colten, 3.5 years old

A tethered cord surgery, or a tethered cord release, is pretty common among those with Spina Bifida Myelomeningocele and there are some tell-tale signs that usually lead to a tethered cord release. Some people need releases as infants (rare), many need one during a growth spurt, and some may never one. Every person with Spina Bifida that has had a surgery to close up the spinal cord will have a tethered cord (TC)- that is not the issue. It simply comes with the territory as a result of scar tissue build up. However, NOT everyone will require the TC release surgery. Only those that are displaying symptoms. Some of these symptoms are a change in function (decrease) or gait pattern, change in bowel/bladder function, back pain, fatigue, and a few others. For the past seven months, we have been dealing with quite a few of those symptoms. None severe, but enough that we and the physical therapist have had numerous conversations about the possibility of it. And Richard and I have had many, many conversations about it that do not end well.

You see, we have a fear – rightfully so, of this surgery. We have since first learning about it. The surgeons go back into the incision on the back, into the spinal column, and clear out the scar tissue. Well, when they go back in there, sometimes they hit some of the nerves nearby. We’ve heard too many stories of people losing more function due to the surgery. We’ve heard one where a child gained function. It’s a difficult decision for families that have to make it because when a child is symptomatic, it’s miserable and they cannot get better. But you know that the surgery could result in even more function loss. But it will relieve pain usually. Sometimes declining function is restored, sometimes if you wait too long though, you simply lose that function anyhow.

Happy kid after making Monkey Bread with Grammy & Papa

So as these issues started to pile up, we have worked hard to fix them one by one. Our biggest issues were the change in bowels, which has mostly resolved over the past couple months – finally, and pain in the legs/hips/back. And that’s what I’m focusing on today – leg pain. We have had four – count them, FOUR pairs in the last seven months. FOUR. He broke through two pairs, and another was “too bendy” – it had articulating ankles – a joint at the ankle that allowed him to more freely bend. These didn’t work too well. Given that he doesn’t have control at all over the right foot and only one direction on the left, it wasn’t really a surprise. Except that all the previous pairs of braces that he broke were broken from bending at the ankle! He has also complained of every pair being bothersome in some way or another. So we felt his body was trying to tell us something and we tried the articulating ankle. As I said, that didn’t work so we went the exact opposite way – a harder plastic solid AFO. This is similar to his other pairs but much, much stiffer – almost cast-like. No bending on these! After a few weeks adjusting to them, we’ve been on a very good road with this pair. We started seeing some breakdown on his inner ankles a couple weeks ago so we took them in for an adjustment and they even shaved down some of the bottom to allow a little bend in the toes as he walks so it’s not such a stiff, flat-footed gait.

New AFOs with stiffer plastic

Today, I captured this video of Colten as he walked from Parker’s bus stop all the way back to the house… [ http://www.youtube.com/watch?v=Ztl68nOzlqY ]

I don’t often think of the awesomeness of him walking because I am with him every day and it’s hard to look outside the day to day. My dad recently reminded my husband of what the doctors at Mott Childrens’ Hospital said when Colten arrived there the day he was born… To not expect him to walk. That he might possibly do so around the house, a little, but would need a wheelchair once he stepped outside the house. And while he does have a wheelchair to help with long distances, he is comfortable getting in and out of it to be mobile in whichever way he chooses. More on that another day. For today, this kid walks all over the place!

And sometimes rolls! His crutch holder makes a great stick holder.

Braces, Crutches, Wheelchair, Therapies – And VACATION!

March 5, 2016 by Kate

There are a few things that have held me back from posting recently… our last post was our 100th post. I had planned on doing a 100 things we’ve learned type of post, but just never found the time, hence the 100th came and went without much ado. But then I thought, I’ll do 101! Well, as you can see, this is also not that post. And our “new” addition (she is now 7 months) still keeps me from being able to sit and think very long at once – and on the rare times I do get a big chunk of time, I am usually squeezing in as much work as possible. We’ve had intermittent childcare, and with more work hours needed than sitter hours available, keeping up with all of the various work buckets I have has been tough. Also, I don’t think anything we have going on is all that interesting most days!!

But cute? That we have a lot of…

In a photo-style catchup, since our last post in October, the day before Colten’s 3rd birthday, we’ve done some stuff…

Turned 3 and had a Foo-Foo cake (as in his stuffed bunny that he is attached to – as in Luttle Bunny Foo Foo… Cue song stuck in your head)

Had an invasion from Star Wars characters on Halloween (and got to meet Bumblebee)

Enjoyed a Christmas season, including making cookies at Grammy & Papa’s.

Here we are though with some new “stuff”, new turns in our adventure, and new roads ahead.

First, for all the other families that are in our SB community, sometimes I know I read other families’ blogs to see where their kids were at certain ages. For as much as Spina Bifida is a “snowflake” and no two cases are exactly alike, I have found certain kids that Colten somewhat follows in terms of development, even if it seems to be winding pathways that intersect on occasion. In short, at 3 years and almost 5 months, Colten is walking with AFOs independently and with his walker. He is exploring forearm crutches but they are far from functional and they slow him down. He just got a wheelchair and can climb in and out on his own. He can ride a trike with adaptive pedals (no hand crank!). He goes up stairs by crawling, and down by butt-bumping. He can also do somersaults!

BRACES

In December, we got Colten articulating AFOs. These are hinged at the ankle. But wait, you say, I thought he couldn’t control his feet?! And you would be mostly correct! He cannot control his right foot or toes at all, and his left he can only pull upwards. However, he kept cracking and bending all his braces near the ankle joint and our Physical Medicine and Rehab doc remarked, “He seems to be trying to tell us something!” So while I requested articulating on the left and solid on the right, they did two articulating braces. On the back was a strap that would lock down or loosen the flexion of the ankle as we desired for him. For the first week or two we left it completely locked just to make sure the braces were fitting properly. Then I loosened up both braces every so slightly. Every. So. Slightly. After about a week of that, Colten asked me to make them tight again. Then after another couple weeks, he asked me to get him braces that “aren’t so bendy”. Since we are in the appropriate time frame, we had them re-made without articulating ankles and picked them up last week. And the left one is already bending and cracking. Sigh. This will give us the option of using an articulating ankle on his left foot if we (he) choose, while keeping the right in a solid AFO. It is obvious from how he was walking that the articulating ankles cause him to be more unstable. He did get a larger set of twister cables as well. Our PM&R doc feels he doesn’t need them anymore, however, our PT feels that they do assist him. So we wear them for PT and other days as we remember to put them on, but not every day like we used to. He seems to have a variety of pain complaints these days – we aren’t sure why – and the cables make his feet hurt – he says. But he has limited/scattered feeling in his feet so it’s hard to tell what the issue might be. Because somedays he claims his braces or regular shoes hurt his feet as well. This is possibly indicative of tethered cord, which would mean another surgery in the near future, but we’re not convinced yet and neither is neurosurgery. It could be that he is starting to get some feeling in his feet!

FOREARM CRUTCHES

The forearm, or Lofstrand, crutches, have been a point of struggle and frustration for us. Those of you that follow Colten closely or see him out and about know he can walk without his Kaye walker, and sometimes chooses to use his walker. When walking without his walker, he does stumble and fall, lose his balance, and tire easily. But he’s walking! The crutches are certainly smaller in profile than a walker and can more easily go places a walker cannot, but they take much more skill to use – and patience. Most children simply do not have the cognition to use them efficiently until about age 5-6. We noticed other 3-4 year olds starting on them and jumped into them. What we did not take into account is that the other children using them did not walk fast without crutches – Colten does. So the crutches actually slow him down, for now. We practice with them during therapy and once in a blue moon at home, but they are not functional for his every day use. He did get his own red set, so we sent the pink ones back 🙂

WHEELCHAIR

My husband and I have gone back and forth about a wheelchair for Colten over the last year. We finally ordered it in November and it arrived mid-February (shockingly fast). Even after picking it up and watching him wheel around Target, I kept thinking, he can walk. He can walk independently. Why does he need this? Was it too early? Then as he wheeled past me with a smile, raced his brother Max, and moved around the store with ease, he kept saying, “I can do it myself. Don’t push! I can race Max! I love my wheelchair! I’m keeping up with you Momma!” (This from the child that has fought us on every single piece of equipment we’ve introduced!)… I realized the truth to what another SB Mom said to me: “it’s about his happiness”. And so it is. His happiness, his comfort, and his ability to get around with a little more ease, a little less pain. I have a lot more to share about the wheelchair and will do so in its own future post. We’ve learned a lot (not nearly enough though) in the little time we’ve had it and the few times we’ve used it and from the therapists working closely with him. This little blurb hardly scratches the surface!

THERAPIES – PT AND OT

Colten continues his weekly outpatient sessions through Beaumont Children’s Rehab. We enjoy working with our PT there and she always finds ways to engage him in fun play while sneaking some work into it. From finding cars to throwing bean bags to playing basketball… And we see a PT and OT through South Lake Schools for “consultation” therapy sessions once a month.

But the new addition to our team will be another OT, this time through Beaumont. Colten has always scored above his age for OT – which handles mostly fine motor skills (think writing, cutting, buttoning, etc). We’ve always kept him with OT through the school district because it keeps us on track, helps us when we have questions, and there are other things we want to work with them on as he gets older – self-dressing and other self-care skills. However, we requested some help from our Mott team on two specific challenges: food pocketing and noise-induced panic attacks. This is another section that could use an entire blog post so I’ll leave it at this for now. Hopefully when I go to post in the future, we’ll have some interesting things to talk about in regards to the therapy being used.

VACATION

I now understand why parents go out and do so much after their kids are gone. You can finally enjoy it! Not that Richard and I didn’t enjoy the vacation, we certainly did, but it was exhausting! We drove to Florida (took the better part of 2 days each way) and spent a week in Kissimmee. It was much needed by all of us… except for Max – he says vacations are too much walking. We were given a great opportunity for inexpensive overnight accommodations that we couldn’t say no to (thank you Uncle Gordon for that and so much more!), managed to get a little bit of discount on some ticket pricing (thank you for your help with that Dad – and the beautiful repainting job you did while we were gone!), so off we went!

The short version: we did the Crayola Factory, LegoLand, Disney Springs, and the Kennedy Space Center. With four children 6 years and under, two that are quite dependent on us for their mobility, it was tiring. Exhausting. But at least I had fun on the roller coaster! You’ll understand more when you view the pictures… Enjoy!

This picture is from Ruby Falls in Chatanooga. Great stop, amazing sights inside the cave, well worth the time! Parker was so fascinated – he must have taken about 100 pictures on his camera!
We made it to Florida! Yay for warm weather!

THE CRAYOLA EXPERIENCE

DISNEY SPRINGS
LEGOLAND

KENNDY SPACE CENTER

My favorite picture from the trip… Probably in my top five pictures of the past almost seven years of motherhood!!! The boys first big roller coaster 🙂

Where Have We Been?!

October 2, 2015 by Kate

It’s been a while! Four months since our last post. Why the hiatus? We were enjoying a bit of summer fun before our newest bundle came along…and did SHE ever come along! Our little boys now have a baby sister – Sophia Rose! She joined us July 17 and we’ve been spending all our time since then loving on her and adjusting to the extra chaos a tiny little being can bring. Then school started, extra activities for the kids, therapy kicked back in for Colten… We’ve been a bit busy.

Colten meets Sophia

This past summer was truly a period of growth for Colten in terms of what and how he’s “doing”. We were off from physical therapy all summer but Colten’s strides in movement and strength have just been incredible to look back on. He’s busted his braces a few times – he really is a mini-Hulk! We even had to get new AFOs remade after ONE DAY of getting new ones after he cracked his previous pair. His twister cables have snapped in two different locations.

What else did we miss sharing over the last four months?

We participated in and helped run the 3rd Spina Bifida Association of Michigan Walk ‘n Roll… a great success!

SBA of Michigan Walk n Roll

We enjoyed fireworks at a few places (Colten is NOT a fan of loud noises; we find this is somewhat common among kids with hydrocephalus).

Colten learned to ride a regular tricycle (with adaptive pedals that secure his feet to the pedals) just before we received his adaptive trike (includes the same type of pedals but has a hand-driven crank as well). This was quite a surprise to us and it’s been incredible to watch him learn to pedal, figure out when and how to get his stronger leg in front to get unstuck from places and turn around, etc… We certainly anticipated he would need a hand crank – he has of course, once again, proven us wrong!

Riding a Trike!!

He built the “Big Wall of China” as he calls it…

We got prints of the calendar he is on, that will be all over U of M in 2016… How sweet is this?!

Enjoyed a picnic with our Michigan Spina Bifida friends and families – even found out Colten is really Spiderman!

And then the school year started! As I mentioned, Colten has started back up in outpatient physical therapy through Beaumont. And we just redid his IEP (long story) for this school year to give him walk-in PT and OT through our local district. We are waiting one more year to send him to preschool and hope to send him to the same preschool our other boys went to. Our plan is to have him there two years, same as the other kids, then he’ll move on to our local elementary for Kindergarten.

How Colten moves around seems to be the most frequent thing people inquire about so here’s a catch up… We were able to get his new walker repainted yellow by the amazing team at Detroit Choppers – thank you again Rob! Colten LOVES his “yellow wheels”!

He’s been using his walker sporadically. I thought he would use it more but he’s taken to just up and walking around without anything (except braces of course, and usually his cables), or by holding hands. We like to give him the choice of his wheels or “plain” as he calls it (walking without the walker). He seems to be learning where and when he might want his walker or nothing. Every day as we drop the older boys at school, some days he takes his walker and some days he doesn’t. It seems to reflect how tired he is that day, or which boy we are dropping off – we have longer walks into Parker’s school than into Max’s preschool. And with the cooler weather, he’s been asking for a stroller now too.

And now he has another option – forearm crutches, or Lofstrand crutches. Or as Colten said when he first picked them up at the PT office, “Now I have guns!”

We have a pair we are borrowing from his physical therapy office while we wait for his to be ordered. We’re hoping the process is quick as these are just a bit too tall for him and we’ve had to attempt to hodgepodge a solution on them to make them work at the right height for him. We are also hoping to add some padding near the forearms as the hard plastic probably won’t be comfortable for long usage. The crutches are a bit of a learning curve and a frustration. Colten actually walks amazingly well without his walker (especially for a kid who wasn’t supposed to walk at all!), so I assumed the crutches would be easy-peasy. They’re not. They require an intense amount of coordination and patience. And he needs to SLOW DOWN to actually use them properly, until he gets the hang of it. So what happens is he picks them up and just walks along without really using them unless he starts to tip and needs to catch himself. The PTs are patiently working on teaching him the reciprocating movements to coordinate a step/crutch, then opposite step and crutch, etc…

What is nice about the crutches is that because of the forearm cuff, he can let go of the handles to carry something, hold something, etc, and the crutches will hang from his forearms. He can then walk without leaving them behind and without using them if his hands are in fact tied up. In conversing with the PT about my surprise in how difficult they are for him to use, she explained that unlike a typical walking pattern that most people have which includes swinging of arms/upper body in stride with the alternating leg moments, Colten has learned to walk with a walker, which stabilizes his upper body and arms. He has learned to walk while pushing/pulling an object that doesn’t reciprocate like our legs. When he walks without the walker, he is more unsteady and has an exaggerated side to side movement of his upper body to compensate for muscle weakness and imbalance. The crutches will help that, but he almost has to learn to walk in a new way to utilize the crutches. The other challenge to overcome, something he will need to learn, is when he starts to fall backwards. Due to the lack of hamstring and butt muscles, when he starts falling backwards, there is no stumble or recovery – he just plops down. With his walker, the back of the walker would catch him and prevent falling usually. The crutches can do the same, if/when he learns to use them in that capacity. That will take time!

Either way, we experiment with them, try them out, use them. We can definitely see Colten using these in more places than a walker because they’re lighter and easier, as he gets older and stronger. So we are in the process of getting them ordered!

In other family news… Parker is now in 1st grade and was very excited to be a part of cub scouts this year. He also enjoyed some ice skating and hockey skating classes over the last few months. Max is in his second year of preschool and starts a Mini Ninja class at the gymnastics center soon – he’s our future Ninja Warrior for sure… I’ve actually had to tell him to “stop climbing the wall”! Richard has a new class he’s teaching at school – Forensic Science – and is thoroughly enjoying the students and coursework. I’ve taken on a client contract with an amazing event management company that I’m very excited about and loving the work we’re doing so far. And our newest bundle just goes with the flow!

A very special note for today: HAPPY THIRD BIRTHDAY COLTEN!

We cannot believe it’s been three years since you were born… It’s been an awesome road, buddy – and we look forward to many more adventures!

Chicks Dig Scars

May 27, 2015 by Kate

I’m not sure, even after 30-some years of life, that I have as many scars as this child. And last week Monday, he added a doozy of a scar to his head, and his second ambulance ride. If you’ve never been around someone that is bleeding from their head, let me forewarn you: heads bleed A LOT. MASSIVE amounts of blood. My mom said it looked like a crime scene in our house when she got there.

I had just put Colten and Max at the table for lunch and turned to get my own lunch ready. I heard a bang and knew a highchair (and child) had fallen. It sounded like Max’s chair and I heard no fussing. Then I turned around and saw Colten missing from the table – then I heard the screaming and crying. I ran over to scoop him up and held him, inspecting his face and mouth looking for the injury. My hand was on the back of his head while I carried him out from the dining area through the (off-white carpeted) living room. It was then that I felt the drips on my hand, looked, and saw blood dripping all over the carpet and noticed the trail behind us on the dining room tile (also white). I quickly carried him over to the kitchen, set him on the counter and grabbed a wad of paper towel to hold against his head. I couldn’t see what was back there but it was gushing. I thought for a few brief seconds of how I could manage getting him and Max into the car and driving to the hospital – then realized I could not do that and keep a compression on his head!

So I dialed 911. I was trying to stay calm, which resulted in a fast-paced talk over a screaming child while my hands shook crazily trying to comfort him, hear what the dispatcher was asking/telling me, and keep new wads of paper tower coming as they became saturated in blood. It wasn’t pretty. I was almost breathless as I was talking. Once they verified an ambulance was on its way, I had a very helpful 4-year-old unlock and open our front doors and then stand on the porch to help wave the paramedics down. At one point, Max came over to see Colten and said something along the lines of “Is Colten going to be done?” When I asked him to repeat the question, he mumbled, “Uh, you know, dead… Ah, forget it!” I reassured him that Colten was just bleeding and he would be okay but that the ambulance needed to come so the paramedics could help and that Colten would need to go to a hospital for stitches.

While I waited I got in touch with my mom, who was about a mile away watching my niece and thankfully she was able to come right over to stay with Max – AND she even cleaned up the blood everywhere after we left! Thank you Momma!

The paramedics came in and by then the bleeding had mostly subsided. They checked his wound quickly and then had me carry him out to the ambulance. We sat on the stretcher together and Colten about had a fit in there. He wanted NOTHING to do with being inside of that truck. Once my mom arrived to stay with Max, we took off down to the closest hospital with a pediatric ER, St. John’s.

During the drive was the first time I was able to see the actual laceration on the back of Colten’s head. I will spare surprising you with the gruesome image, but as we have never shied away from sharing wounds before, if you really want to see it you can click here to open the image. Had Colten just hit his head on our tile floor, he probably would have had a big bump. But Colten landed back on a small brick step/divider right in our front door landing/foyer/whatever you want to call it. Needless to say that step edge is now fully covered in rubber padding all the way around. And we moved his highchair so he backs up against a wall. Not that it prevents him from still trying to rock his highchair side to side…

The hospital staff was great – Colten did an amazing job during the shots to numb him up and rested on me the whole time. For a 2″ laceration, because it was such a clean line cut, they only needed four stitches! Their first choice was to staple shut, but I informed them that Colten was scheduled for an MRI on Thursday, his annual follow-up for his VP shunt. So we certainly didn’t want to put metal in his head! The four stitches helped to realign the skin of the opening and they bandaged around to catch a little of the extra blood before we left.

This boy just wants to keep us on our toes! He complained of a headache that evening but after that was right back to his usual self, thankfully. The hardest part of recovery was making sure his wild brothers eased back a little playing with him so he didn’t re-open the wound.

So as eventful as the first part of our week was (did I mention the day before there was a fire at Max’s preschool?!), Thursday was Myelo Clinic (Spina Bifida clinic at CS Mott Children’s Hospital) and was a LOOOOOONG day as well. Colten and I reported to Mott at 8:30am for his kidney ultrasound, then followed that with a sedated MRI to do a quick-scan of the ventricles in his brain (where his shunt is, draining fluid), then a CMG to test his bladder function. After all that, we went to the Myelo clinic where we met with his various specialists from Urology, Neurosurgery, Physical Medicine & Rehabilitiation, Social Work, physical therapy, orthotist, and the wheelchair seating clinic.

We talked at length with our Urology nurse about Colten’s enema program and how that is going. Urology doesn’t typically handle bowels of course, but in the case of children with Spina Bifida, it seems that they do out of necessity. Normally a GI doctor would handle bowel issues but there seems to be a disconnect between Spina Bifida and “typical” (?) GI dcotors. Other families have found them not very helpful. Most families work through their urologist to handle the bowel needs. So we discussed what we’ve been doing and how it’s working and then reviewed his kidney ultrasound (all good still!).

Moving on to Neurosurgery, all was status quo. No issues, no concerns, ventricles look great, done.

Physical Medicine and Rehab came in with the Physical Therapist, Orthotist, and wheelchair seating specialist. They were quite amazed at how well Colten maneuvers with his torsion cables. Our PM&R doc is not typically a fan of cables of any kind and we had to do some proving of the value of them for him through various models with our physical therapists. She agreed they were much better for him than KAFOs. Since Colten was still groggy from his anesthesia earlier, he wasn’t super-cooperative but luckily we have plenty of video of him walking independently without his walker, riding an adaptive bike, using a scooter, etc… So she looked at those to see how his form and strength looked and then gave us permission to move forward on forearm crutches already! In talking with his PTs, the earliest they’ve seen kids with them is 3 or 4 years (Colten will be 3 in October). She said “he’s basically walking without the walker as it is, so we know he can handle a little less support”. The crutches/canes won’t help him walk as fast as he goes in his walker, but they’ll provide another option for him in terms of movement.

We are continuing to hold off on a wheelchair. Even though there are certain use-cases I could see it being valuable (at the zoo, at big parks along bike paths), we still use the stroller and Colten is okay with that. It does take 6 months to a year to process and we probably will opt for starting that process when he’s 4. Or not. We’ll see when we get there. We’re trying to take our cues from him at this point in regards to mobility. He’s determined to move independently in his walker, and I’m assuming he would enjoy the extended freedom of a wheelchair instead of a stroller some time soon, but for now he’s content in the stroller.

So after that LOOOOONG week, Colten once again knocked our socks off. As you may have read, he recently was fitted for an adaptive tricycle with a hand cycle and foot pedals on it. He even had a chance to ride a similar one at his EarlyOn school on Monday (pre-head injury) and rode it quite a ways very successfully – steering and all. On Saturday we were outside; among the plethora of ride-on toys in our garage he asked to ride on our tricycle. Last summer we had some adaptive pedals made by my cousin (tutorial HERE) and tried to use them a little. We didn’t have a push handle for this trike and Colten couldn’t propel, so we would push him a little but it was quite difficult to go far. However, it did get his legs moving in the pedaling motion so we were hopeful that we could devise a push handle for this summer and do more with the trike. Knowing we have an adaptive one coming though, those thoughts didn’t really come back to us yet this spring. So Colten asked to ride it and I located the food pedals to strap his feet into. As I got him into the trike I said, “Colten, these handles don’t pedal like the other bike; you have to use your feet if you want to ride this.” He said “Otay” and then TOOK OFF DOWN THE DRIVEWAY.

ARE YOU KIDDING ME???? He can PEDAL A TRICYCLE????!!!!
[ watch the video here ]

I think I’m still speechless so I’ll leave this post at that 🙂

Well, unless you want to see a video of him walking around without his walker… [ watch video ]

Lessons learned over and over and over:
Doctors really never know for sure. Medicine is a practice and it isn’t perfect.

Your child will do what your child will do when your child is ready to do it. Or they will do it differently. Or they won’t do it at all. It really doesn’t matter.

Give your child plenty of opportunities to try (and fail); never tell them they “can’t” or “won’t” succeed at something. They will amaze you.

Bike Day at Beaumont – Colten’s First Adaptive Bike

May 6, 2015 by Kate

As I got out of the car and looked around at the people and the bikes spread across the parking lot, tears came to my eyes. The generosity of people never ceases to amaze me. These people didn’t have to be here. These bikes didn’t need to be made. They didn’t need to bring all of these families out and provide them with FREE bikes and helmets. I could blame it on the pregnancy, but I’ve reacted like this when we’ve been invited to other events such as the Beaumont Christmas party. Unbelievable displays of generosity, love, caring, and support.

Hard to see the many bikes but this entire lot was surrounded by volunteers, specialists, and bikes!

As a physical therapy patient of Beaumont Children’s Rehabilitation Department, Colten is eligible for Bike Day and he is now old enough to get on the list. So we were invited to Bike Day this past weekend where Colten was able to sit on a couple different bikes, test them out, and find one that works for his needs. The entire event was quite incredible to see. I tried to take a picture of the entire lot but it’s very hard to see the actual bikes in this picture. There were so many versions and adaptive options throughout the lot – from pediatric hand-trikes to regular kids Trek bikes with extra-supportive training wheels to adult recumbent hand cycles and everything in between. Volunteers from Beaumont’s Rehabilitation departments were everywhere – checking families in, getting attendees fitted for helmets if needed, getting drinks and snacks to the other volunteers, helping situate attendees on proper bikes as well as fit them and help them test out the bikes.

I’m not sure if Ambucs was the only adaptive bike company there, but they were the only one I noticed because they were the ones we worked with. After checking in, we were paired with Holly, Colten’s PT from when we first moved to the east side of the state and did his PT sessions in Royal Oak, and Jason, another therapist. We brought Colten’s own helmet and the fitters checked to ensure it still fit him, much to his disliking. He hates wearing his helmet and this little fitting resulted in about 10 minutes straight of crying until we got him on a bike and moving. After the helmet was on, we made our way to the pediatric trike section that had dual-mode cycle options (hand cycle and foot pedals combined into one bike) and single-mode cycles – both hand-only and foot pedal only. The best choice at this point for Colten is a dual-mode cycle because while he will mostly propel himself with his hands, yet we want to encourage the pedaling motion in his legs. That will give his legs movement and exercise. It is possible as he gets older he will also use his legs to help him propel.

I would think to say he will always need a hand cycle and always need a trike-style (3 wheels) bike, but seeing as this child continues to prove me wrong time and again, I’ll just say that this is the type of bike we’ll start with and we shall see what he grows into!

We started with a new model of the Amtryke pediatric trike. It was a NICE BIKE for sure. It was easy for me to push and steer from behind, but it was very heavy. And it wouldn’t be available until August.

Then we tried a used bike – the current/outgoing model of the Amytrke pediatric trike. It was definitely lighter, but the steering capability was almost nothing. I could push with the handle, but could not maneuver it. The steering, just like most bikes, comes from the front handlebars, meaning Colten is primarily in control – however, he’s so focused on pedaling with his arms, it may take a little while until he can control BOTH propelling and steering with his arms. Then the Ambucs gentleman brought out a different rear wheel and seat configuration and attached it to the front end of the bike Colten was just on. This had a much better steering mechanism in it (not quite as nice as the newer model), didn’t add much additional weight to the bike, and Colten was able to take off with just a little steering assistance from me when he needed to turn.

[ Video of Colten trying out his adaptive bike ]

So that’s the setup we agreed would work best for him! The bike will be cleaned and properly refurbished for him, and we will receive it in late June / early July. The Ambucs staff feels with the condition of the bike and Colten’s size, we will most likely get only one year out of the bike. So next year, we’ll take that bike back to Bike Day and can use it as a trade-in for a new bike next year. This is a no-cost system for the recipients as long as we bring our bike back for trade-in!

We are incredibly thankful to be a part of the Beaumont system for Colten’s therapies – great people, wonderful service, amazing opportunities. THANK YOU Beaumont and Ambucs!

Expecting a Baby AFTER a Special Needs Baby

April 28, 2015 by Kate

When you give birth to a baby with special needs, the thought of having more children is wrecked with anxiety, hope, fear, guilt, and love. You wonder if “it” will happen again. Then you feel guilty because frankly, you love your child, special needs and all, and accept them just as they are. In one breath, you know you could handle another child with those same needs – you’ve been there, done that. In the next breath, you hope your body can do the best it can do to grow a baby without those needs. Then in yet another breath, you realize each child has the potential to be born with any number of special needs, or may acquire any number of special needs in his/her lifetime.

The idea of having another child, if that’s in your family plan, may be scary nonetheless. Can we handle the medical needs of our current child (plus our other children!), and a newborn? What if there are medical needs for the next child – now we have two children requiring extra time, travel, appointments, therapies, equipment… But then again, at some time or another, it seems like each child presents varying degrees of needs that pull us as parents from one child to another.

Is it fair to have another child? Will we be able to provide for that child like we have the others during infancy and toddlerhood, given the special needs of our current youngest? Can we handle it? Then again, each successive child has a different experience due to the number of older siblings s/he has – so what really is fair?

What about the mindset of having an even number of kids – seems like someone is always left out if you have an uneven number of siblings. Would having an even number help, or will the child with special needs be left out in the end regardless of number of kids?

And then for us, we have all boys – what if our next child is a daughter… does that still leave the tables “uneven”? Does it give our youngest child a higher chance that his sister will help with caretaking when they’re adults, if he needs extra help? His brothers have pretty big hearts and are quite helpful already… brother or sister doesn’t matter, hopefully it’s all in how we raise them.

And what if we decided we were “done” at three children? Is that a decision we made because my husband and I felt it was right, or would we be allowing our son’s disability to determine our entire future? Sure, having a child with disabilities changes the way you travel, experience places, park your car, live, choose schools, buy cars, buy clothes, schedule things, and more. But it shouldn’t be the driving force of our entire existence, nor should it be the driving force of his.

We have our hands full… People tell us this all the time as it is. As if we didn’t know! But our hearts are also full. We have a home of chaos and fun, laughter and loudness, rough and tumble and hugs and kisses. Three boys ages 6, 4, and 2 years IS a handful. If it wasn’t, there would probably be something wrong!! Add in that one of those children requires 2-4 appointments/therapies each week, surgeries throughout a lifetime, medical procedures on a daily basis… and parents that like to stay involved in schools and community things. We are BUSY. But that’s our life and that’s what we wanted. Kids close in age. Involved in our surroundings.

So then you finally decide. You decide that you want another child. Whatever the reasons may be, as long as they are YOUR reasons, they are the right reasons. Regardless of anyone else’s opinions. It seems that people are more opinionated about the number of children you have the more children you have – and add in that one of those has special needs, and now people think you’re crazy. Want to know what I think is crazy awesome? When people have their first child and s/he has special needs – and then they decide to have another child! I love this. It means that those people realize that each child will come with challenges and mounds of love. They realize they haven’t been dealt a “no more kids” card – life and families continue right along with special needs.

When you finally get pregnant, back come the emotions from deciding to even try for another child…anxiety, hope, fear, guilt, and love. In reality, even mothers-to-be without a child with special needs feel these very things. The added negative feelings come due to the reasons behind why your child might have special needs and how that impacts future pregnancies. Is there a genetic link? Environmental? Do you do genetic counseling? Do you get all the tests in the world that are offered? Are there special things you need to do to try to do something “better” or more “right” than the last time? Then that opens a whole other world of guilt of course… Did you do something “wrong” the last time?

Then comes the time when you think you are ready to start telling people. We knew there were plenty of people out there with their own opinions about whether we should have another child or not, and frankly, it’s not their decision/problem/choice, so we didn’t want to deal with negativity. And we didn’t want to keep hearing the typical conversation that goes something like this, over and over again:

Anyone: Do you want a boy or a girl?
Me: Doesn’t matter. We already have three boys – so a fourth would be “easier” – we have all the clothes!

(or if they know we have three boys already…)

Anyone: I bet you’re hoping it’s a girl!
Me: (awkward shuffle and smile) Well, not really. I mean, we have done the boy thing, we have all the boy clothes, I’m okay with a fourth boy. But either way, boy or girl, in the end it doesn’t matter…

Either of those conversations tends to continue with this gut-puncher:
Anyone: Well, as long as the baby is healthy!

Me: (to myself, in my own head) NO, not “as long as the baby is healthy” – we will take this child with anything s/he comes with, just as we did our youngest child… We’ve done the other road, and we can handle it. So we’ll take whatever this baby brings us! And healthy baby or not, the future can hold a million other things for every child that is born, good and bad.

Me: (finally out loud after biting my tongue, hmm-ing and haw-ing because I’m sure saying THAT thought isn’t going to sound nice coming out, or is just going to be awkward) Mmmm. Sure, either way…

But in the end, the reality is that every pregnancy and every child has unknown risks. Any one of our children could come down with an illness, sustain an injury, or be diagnosed with something requiring way more care than what we give Colten. And we don’t know if/when that will happen. We cannot plan our children “around” special needs. So you either decide you want more children or not – it really has nothing to do with special needs. Yes, we do need to consider our resources, energy, logistics, etc… but the special needs of one child in and of itself should not be a deciding factor.

All that being said, if you haven’t guessed already or been told already, or seen me waddling around town, our family is excited to be growing again! We will be welcoming our new bundle of joy in July! (And no, we do not know if it’s a boy or girl. And no, we are not going to find out.)

Surgery #6 & Other Updates

April 22, 2015 by Kate

Tomorrow is Colten’s 6th surgery… If you had told me a few years ago I would have to see one of my children undergo multiple surgeries before the age of three… and that three of those surgeries would even take place before the age of 5 weeks of age… I think I would have buried my head in the sand or had a panic attack. Five surgeries later, as nerve-wrecking as it is watching your child go under anesthesia, it doesn’t feel quite as scary. Still scary, just not AS scary.

Good thing we have superheroes all around us to keep us smiling! This picture is from the Spina Bifida Association of Michigan’s Snowflake Shake – a family dinner/dance event we went to a couple months ago. It was amazing, and Spiderman and Elsa both came!

Thankfully, this surgery is his most minor to date – ear tubes. It pales in comparison to putting a spine back in place, placing a shunt in a brain, replacing a shunt in a brain, etc… But it’s surgery and it requires anesthesia, so there’s still a little anxiety. And from Colten’s perspective, hospitals are hospitals and he doesn’t do well with doctors poking around him these days. But we should be in (and we will be in VERY early) and out tomorrow with much healthier ears. Colten has had recurring ear infections for about a year, and has been unable to completely get the fluid to clear out from his ears ever. So tubes are going in.

In other news, Colten continues to progress with walking in his AFOs and torsion / twister cables. He will take on average 3-6 completely independent steps (no walker), and is learning to use cane-like “tools” as well, which will eventually lead to him trying to use forearm crutches. It’s been amazing watching him go from the couch, across the room to a chair, all on his own!

Want to see another amazing feat this kid has accomplished? Roller skating!
[watch video on YouTube]

Colten is still attending therapy through the school district twice a week – one hour of group physical therapy and occupational therapy, then one hour of 1-on-1 physical and occupational therapy. Up through last week, he was still also going to outpatient/clinical physical therapy once a week through Beaumont. We just put a pause on that though, as we felt we were hitting a bit of a plateau. He was meeting his goals and struggling to cooperate, so the physical therapist and I decided to let him have a little break until summer time. At that point the school therapy will be ending and Beaumont will be transitioning to two-a-week sessions which we are very excited about!

In therapy, Colten does a lot of upper-body work to keep his arms and torso strong, a lot of climbing stairs, squatting and picking up things, jumping on trampolines, climbing up slides in various ways, going up and down ramps in his walker, etc… He works hard – or rather plays hard… the therapists really do a great job of making work seem like play for him.

And of course, we have found it pretty easy to do therapy play at home… balance on one leg while using the other to propel a scooter? Go for it dude!
[watch video on YouTube]

He has become so comfortable using his walker and walking so well in his cables and braces that he’s becoming quite the daredevil. He now will get walking super fast, then picks up his feet and just rolls along while he holds himself up above the ground in his walker. Even down sloping walkways! Which of course landed him in trouble one day when his shoe caught the sidewalk and caused him to topple over and land face-first on the cement. Thankfully he was wearing sunglasses which, although they sliced into his forehead, saved the rest of his face from any damage whatsoever.

Right along with the occasional injury, Colten is very much two and a half years old and seems to have learned the skill of antagonizing his brothers on a minute-by-minute basis. “Stop it Colten” is heard around the clock from the mouths of his older brothers! He adores them to pieces and doesn’t want to leave them alone – but often gets so in their faces it’s a bit much for Parker and Max. Colten does throw pretty cute (?) tantrums where he just sits and cries crocodile tears, such as shown in the picture below… I had caught him at the table after Easter eating chocolates from his brother’s basket. I took the chocolates away and the basket, resulting in a little boy that was very mad at his Momma!

That’s it for now. We are expecting an easy surgery Thursday so you may not hear from us again right away – but soon! Lots coming up in May, June, and July for us to share. Hopefully the snow I saw falling tonight is the LAST of this cold weather. We have been enjoying playing outside for hours during the few warmer days we actually had and we REALLY want those to come back!

Just some closing pictures of the three boys…

At the Fox Theatre to watch Chuggington