Surgery #4 – We Almost Made it a Year!

October 29, 2013 by Kate

Colten is scheduled for surgery on Monday, November 4, 2013. His last surgery, his shunt revision, was November 6, 2012. SO CLOSE to making it a year without a surgery! Actually, I’ve read a number of different blogs from families with Spina Bifida and/or other complications and the fact that we made it this long without any surgeries is pretty awesome and we’re thankful for that. However, Colten is having surgery Monday.

(This was last week after another Ann Arbor appointment)

I’ll start at the beginning of our day… Colten and I left for Ann Arbor just before 7:00 AM this morning (with special thanks to Cousin Coco for dragging her butt out of bed to stay with Parker and Max for a bit this morning!).

8:00 AM – Orthotics & Prosthetics Clinic
We snuck in an early morning visit to Mark at the O&P clinic because Colten has some new ridges that have formed on his head in places they should not be. Instead of growing out side to side in the helmet, his head prefers to grow up and out the top. Mark re-measured him and while the plagiocephaly seems to be mostly evened out (this is a diagonal measurement from front-right to back-left compared to front-left to back-right – like a big X on top of your head), the scaphocephalic shape (torpedo or football shaped front to back) is still quite off. So Mark made some cuts in the helmet to put a more localized pressure on the forehead and it’s a guessing game from here. He’s not confident it will help – it could in fact just force it upward in the new area, but we’ll give it a few weeks and see what happens. Then we can either keep it on if we’re seeing progress or be done with it entirely and it is what it is.

There are a few things still concerning us about the shape of his head – it’s not just for looks! One is that he has an Arnold Chiari II Malformation (it goes along with Spina Bifida). In short, this is when the back part of the brain, the cerebellum, drops down into the spinal column at the base of the skull. If I recall correctly, the malformation is part of what contributes to his hydrocephalus as well. This Chiari II can be mild or severe, symptomatic or asymptomatic. Colten’s is mild and asymptomatic. Yay! Our concern is whether a too-narrow back of the skull will make it more likely that his Chiari could worsen or become symptomatic. Surgery for that issue is a doozy! The orthotist recommended we refer that question to neurosurgery so we’ll come back to that another day. Another issue is a bit selfish – a bike helmet. Our family bikes a lot — we take the kids, everyone wears helmets. We of course want to include Colten in that and based on his head shape, a helmet will be difficult to properly fit for protection. So if we cannot find one that works, we’ll have to explore some custom option for him. The last issue (besides of course that this kid makes it really difficult to get a shirt on over his head) is his left eye. It tends to float inward more often than it should and one doctor told us that because that side of his head is flat, it’s possibly pressing on the external eye muscles which control that motion. That doctor felt that as his head rounded out, we would see that improve. So far it’s not getting much better so we’ll watch that and talk with one of his other doctors about that in the coming weeks.

9:00 AM – Pediatric Orthopedic Surgery Clinic
It has been about a year since we have seen Dr. Li. Colten had great hip sockets at his last appointment (yay to babywearing!) so there was no hip displaysia to be concerned with. His feet were not clubbed at birth (common in babies with Spina Bifida) – they were calcaneo-valgus (or something like that; no paperwork in front of me), which is out and up. His feet were (are) large, floppy and incredibly flexible – the one could fold flat up onto his shin! We did a lot of stretching early on to help release them downward and she was happy with how they’ve grown. She reiterated that he’ll continue to need more advanced bracing as he starts weight-baring. But she fully released him from care until needed! His braces and therapies are all handled currently by the PM&R doctor (Physical Medicine & Rehabilitation), so at least this is one less visit we have to maintain (although at 1/year, it wasn’t hard to squeeze this one in!).

10:00 AM – Radiology
Colten had an ultrasound done to check the condition of his bladder and kidneys. Because people with Spina Bifida often have bladder and bowel issues, this is something checked often and carefully monitored. Right now we go every three (3) months for checks in this department. Because of how his internal organs developed, his bladder refluxes back into the ureters. This can cause damage and infection if severe or not cared for or if someone gets a lot of UTIs. Colten takes a daily (when I remember at least) medication, Bactrim, at a low dose to help prevent UTIs from occurring. A UTI can be pretty serious if not caught and can lead to kidney infections and damage. We don’t want that. So the ultrasound just looks at the organs for any damage or concerns.

Being very cooperative for the ultrasound tech

10:45 AM – Pediatric Urology Clinic, Testings
Next up was a CP Urodynamics – a cystrogram and cystometrogram. They also checked him for a UTI just in case (they can still get UTI’s even on Bactrim but it’s a rare occurrence). These tests involve a catheter, liquid input and measuring of output. It measures how much liquid the bladder holds, when it releases it, and how much gets released and retained. Colten performed quite well and we are very thankful that we are not needing to catheterize him yet (cathing is very common among those with Spina Bifida – it is often a matter of when to start cathing, not if you will cath – although there are some people that don’t need to at all!).

11:45 AM – Pediatric Urology Clinic, Follow-Up Appointment
Dr. Wan came in and reviewed the results of the ultrasounds (all looks GREAT!) and the urodynamics tests (again – GREAT!). Then he did some palpating on Colten in the nether regions, as one of Colten’s “buddies” was playing hide and seek at the last appointment. That one little buddy must have found quite the hiding spot because it has not come down to play yet. Since he is over a year, it is protocol that the doctor jumps into the game and goes to seek out this sneaky little buddy. Hence, surgery Monday. It is laproscopic outpatient surgery, although depending on what they find when they get in there, it could mean 2 incisions or a few more. It could also mean part one on Monday and part two in six months. I’m not sure I understand all of the variables, so I’m not going to bore you with any of them. Once they see what’s in there, then they decide what to do and what happens next.

So that was our day. We hope yours was WAY more fun!

So That’s Where All Our Luck Went!

October 22, 2013 by Kate

A week or so ago, I was lamenting to Richard about our luck, or lack-thereof, over the past couple of years. There were also some things that at the time seemed “bad” but ended up leading us to a better place. In the moment though, it was so hard to see the silver lining or believe that it would just all work out. It got to the point where something bad or even slightly off would happen to us and I would just say, “Of course. Why would this NOT happen?”

Take for instance, our attempted move a month ago yesterday. We tried moving in only to find an infestation of fleas, among other issues. We are STILL at my parents (thank you Mom & Dad!). Thankfully, we have another home we’re moving into it’s just not ready yet. And while we are happy about so many things with the new house (recently updated, nicer neighborhood, lower taxes, closer to preschool, single story, beautiful backyard), we are getting anxious to get into it and every day we are not in there is a reminder that yet again, “of course this would happen”.

I’m not usually a Debbie Downer kind of person in my opinion, but the past few years have really knocked the wind out of my sails and this past year alone has been the toughest on us, yet we have benefitted from such incredible support from family and friends – and strangers. It’s kind of funny (to me, but probably not to my parents), that we kind of bookended Oct 2012 and October 2013 living with them. When Colten was born and we moved him to U of M Mott Children’s Hospital, our other two boys went to my parents for those two weeks. One year later, not only are those two here, we are ALL here. It’s possible when we leave they may change the locks, or move!

So where did all our luck go? Colten. Funny, right? You would think that after having a child born with the most permanently disabling birth defect (spina bifida), after having him shunted for hydrocephalus, then having a shunt revision two weeks later (so that’s major spinal surgery and two brain surgeries in his first 1.5 months of life), after having to put him on daily medication for kidney reflux to avoid infections, after finding out about some other nether region issues, after finding that his lesion might be low (a good thing) but his function is higher up (a bad thing), after monitoring food intake and um, output, on a daily basis to make sure it’s coming out, after fighting with the cranial department to get him seen for a helmet only to discover he certainly should have been sent for one – months earlier and now wears one 23 hours a day for who the hell knows how much longer, after getting him his first set of leg braces, after going to 2-3 appointments per week for therapies, tests, studies, checkups, checkins, after all the paperwork, insurance, and finances, and add in all the normal first-year baby stuff… after ALL that, yes, I believe all our luck went to Colten.

Colten was born with Spina Bifida Myelomeningocele and Hydrocephalus. Along with the myelomeningocele comes Arnold Chiari II Malformation (his is mild so far) so he has that diagnosis too. And because bladder/bowel issues go right along with spina bifida, he has kidney reflux. Besides that, he’s GREAT. He’s healthy, happy and moving right along – figuratively and literally. I am very thankful to have met countless other families on this Spina Bifida journey and they amaze me. And they terrify me. I feel like many of the families have extra challenges in their days with their child – additional things that have creeped up or were there since birth. Or their child’s lesion is higher up. Yes, I have also met families that I felt were luckier than us, but today I’m focusing on our good luck! Spina Bifida being a neural tube defect, it means the spinal cord is involved. And frankly if you ask me, once you mess with that, there’s really no telling where the problems will arise. So I think we got incredibly lucky. Maybe one day the other shoe will fall, but right now we have a one year old little boy with a laugh that sends a smile down to your toes. We have a one year old little boy who crawls all over the house and gets into trouble (take that, doctor that said “he can’t move his legs at all”). We have a one year old little boy with arms so strong he thinks he can beat his older brothers in wrestling (one day, Colten, I am sure you will). We have a one year old little boy with no other major medical problems. I consider him to be the benefactor of all of our lost good luck!

As for Colten, he continues to learn every day. He learns how to move about more comfortably, he learns how to crawl even when one leg is trapped! He learns how to go head-first down the small step to play with his brothers in the other room (and has almost mastered going up the step!). He learns how to growl like a dinosaur. He learns how to make us laugh. He learns how to throw himself off balance (on purpose). He learns how to fall straight back and bash his head on the ground (again, on purpose; that helmet is useful for more than just shaping!). He learns how to push his butt in the air and balance on one leg. He learns how to pull up to a kneeling position. He learns how to pull up to a supported standing position with braces. He learns to share food and toys. He learns to kiss and hug. He learns signs. He learns who he is and what he can do. And we’re learning that really, among all the crazy of the past few years, and this past year especially, we got pretty lucky.

One Year!

October 3, 2013 by Kate

As I finally sit down to write another post, it’s 10:30 PM on Colten’s 1st birthday. A year ago today he was getting into an ambulance and heading down to the University of Michigan C.S. Mott Children’s Hospital. I had held him for three glorious hours and kissed him goodbye. We were told he would be wheelchair-bound. That he had no movement and no feeling in his legs except a slight hint of something in one of his thighs. We were actually given the option to “do nothing” – which would, in the end, mean death.

SERIOUSLY?! I cannot imagine this child NOT in our life. I cannot imagine why not being able to use his legs in a typical fashion would ever warrant someone saying “do nothing”. Bladder and bowel issues? Yeah, aggravating for us but I imagine more aggravating for him later on. Oh right, and the hydrocephalus thing. Yeah, it’s crappy. Yes, he needs a shunt for the rest of his life. Yeah, it can fail (and did after the first two weeks). Yeah, we still feel his darn fontanel every day. Yes, if it fails it’s life threatening. But he has a shunt. He is fine. He is wonderful. He is HAPPY and he is MOBILE (without a wheelchair mind you).

And he is ONE!!!! HAPPY FIRST BIRTHDAY COLTEN!

Let me catch you up on a few things, as it’s been about three weeks since our last post. We mentioned Richard got a job on the east side of the state and was commuting 3 hours roundtrip. Long long days. We attempted to move about a week and a half ago and the house had some major issues. We got out of it (well, almost – our stuff is still there), are staying at my parents’ (huge thanks to them for taking in our family of 5! They just cannot seem to get all of their children out of their house for good… we love them too much to see them so lonely!), and expect to move in to our final landing place in about a month. I’m not holding my breath though. However, bonus about the new house is that it’s a ranch which makes things easier for Colten (still will have to figure out basement steps though) and the backyard is smooth, flat and has a very nice ground-level patio – no extra stairs. So in the end, we hope this is all for the much much better!

And Colten? This kid is hilarious and he knows how to get into trouble. He laughs all day – at himself, us, his brothers, anything. Cracks up. He army crawls like a champ now and gets BOTH knees into the action (he was leaving his right leg behind when he first started this movement). He just started trying to pull up when at a chair or step or something. He gets his arms and torso into the action but hasn’t quite figured out what the heck to do with the rest of the body below the waist when going upward. So he doesn’t get very far 🙂 But he’s trying!

Here’s a video of Colten today with his new fire truck. It’s actually a ride-on toy but we kept the wheels off for now. It’s soft and low to the ground. We hope to encourage some climbing with this. You can get a good idea of how he moves around everywhere from watching this!
http://youtu.be/Z5GZBJYRpAA

He still wears the helmet 23 hours a day (24 if I forget to take it off) and is starting to mess with it a bit more – probably because it makes Momma react. The orthotist removed the foam padding on the sides of the helmet to give his head more encouragement and less resistance to growing outward. It’s not re-shaping very well. Best we can do is leave him in it and hope for improvement. His left eye is still drifting inward sometimes which is most likely a result of the flattening on that side of the head putting pressure on those eye muscles. Hopefully as the head shapes more properly the muscles can strengthen and straighten his eye out.

Helmet Hawk

His AFOs are the cutest little darned things. He hasn’t had any PT though for a few weeks because we transitioned out of our old school district’s early intervention program and are waiting for the new school district to get in touch with us. Although our next home will be in a different county so I should probably get on switching that up. Colten will start outpatient, weekly physical therapy next week, and will wear his AFOs for that. Meanwhile, he wears them when I remember to give him treadmill practice (yes, still doing that. sometimes), and for about 10 minutes most days when I do a little weight-baring work with him (having him try to stand at an activity table, edge of couch, etc…).

From when he first got them:

Colten is eating better. And he eats everything. He rarely chokes on food anymore and is self-feeding finger-foods. This was a huge win for us after going through a couple months where it felt like he would never move past pureed food. Although he doesn’t sleep better. He used to sleep all night, every night. At least 8 hours. Now he wakes up every few hours between 7:30pm and 6:30am. It’s not fun! He must be trying to figure out all these new moves he’s working on. He also now lays on his belly sometimes when sleeping – something he has not done since his spine closure at 2 days old! And for the first time we found him sitting up in bed after waking up! Usually he just lays there till we come get him. Both simple little things but milestones in our eyes!

So, one year later. It’s been quite a year. We cannot wait to see what year #2 holds!

We Have a Scooter!

September 10, 2013 by Kate

GO COLTEN!!! Today he made forward movement – a scoot, if you will! Colten just turned 11 months and has been moving around incredibly well using his technique of twisting, rolling, sitting, and more twisting, rolling and sitting. He moves himself all around the living room to get to toys. But today, TODAY he scooted!

VIDEO: Colten SCOOTS!

While this may seem like a small milestone, when a doctor tells you your newborn son has no movement or feeling in his legs at all, things like this make you pretty excited. It’s one of the reasons I love feeling Colten kick at me under his highchair, or when pushing him in a shopping cart. Spina Bifida seems to be so misunderstood by some medical professionals. And I cannot blame them – how can you know everything about every medical issue? What bothers me is the claims they make about how your child will grow and develop. When really, they just don’t know. No one knows. Every person with Spina Bifida has such different movement and sensation, even if the lesion level is “identical”.

By the way – proof that he does cry:

I had to laugh at the timing of this all. Just yesterday, Colten had his annual review with EarlyOn. They go through every little thing – cognitive development, motor development, adaptive skills, speech/language, etc… Of course forward movement was on there and we had to mark no. (Hey, April, can you adjust the review?!) What I am smiling about deep inside is that last week he had two Anat Baniel Method lessons – one with a new practitioner who is more local to our new house, and one with our current practitioner, Bethany, who we are going to miss terribly! Typically, we do “ABM” once a week, every week. It’s a therapy we pay out of pocket for as insurance doesn’t cover it. However, it’s something we see valuable results from. He moves so fluidly when he moves and he uses his strengths to compensate for his weaker areas. ABM encourages what they call “intensives”, where you do multiple appointments close together in rapid succession, then take a long break. This inundating the brain with movement and connections sticks better, especially with children. We just have not had a schedule that allows us to schedule that, nor the money to throw into multiple sessions all at once. Well, having two appointments last week, then watching Colten since then has been awesome.

Almost as awesome as swinging on a swing!

Just the past few days I have seen him do movements he has not done before. He gets himself twisted up in a way where he keeps his left leg locked and balances on the side of his foot and gets his butt entirely up in the air – his chest is still on the ground but this move seems quite developed for a kid with weak glutes and hamstrings! Yesterday we were playing on the floor and he was able to pull himself up over my legs, using this same locked-leg technique. It’s almost like he’s figured out he can use his straight leg as a lever to propel the rest of his body. I’m sure I’ve never watched a child’s movements as closely as I dissect his – it’s amazing though to watch him progress and figure it out.

Needless to say we might try to figure out how to get him into an intensive schedule. This would make for a busier week than usual one week of the month, but then the other three weeks or so, we would have no ABM lessons at all. So in one sense, it’s a nice way to get them done and take a break, but I love structure and routine and schedules, so we’ll see. We’ll take our ABM “budget” and instead of spreading it over a month, we’ll cram the whole month’s worth into a week.

What else is Colten up to? He loves playing peek-a-boo now – covering and uncovering his own face or ours. He is starting to roll and “wrestle” with his brothers, he’s been clapping for a while and just started waving. He signs MORE and I swear he signed EAT one day but has yet to repeat it again. He finally developed his pincher grasp so he can pick up little bits of food and put them in his mouth (yay for self-feeding opportunities!). He still has a strong gag, or choke, so while most of his foods are pretty pureed, we do try to give some textured foods now too. He has six teeth, wears his helmet 23 hours every day without a fuss, attempts to give kisses, and is still the happiest kid in the world. Except if I leave the room. Then the floodgates open! Hopefully the separation anxiety will calm down, although with a new home in our future (2 weeks!), I’m guessing it will stick around a bit longer.

On that note – Richard is enjoying his teaching job, we are anxious to move to the east side of the state so he doesn’t have to put in three hours in the car each day, and we are living around boxes as we get packed up. This move entails finding a new preschool for Parker (he will start a bit late!), new in-home childcare help, new doctors, leaving friends and some of Richard’s family, and moving closer to my family. So it’s a mix of excitement, sadness and a LOT of chaos.

At least amongst all that chaos, we enjoyed a great long weekend in Traverse City for one of my sisters’ wedding. The boys looked adorable for the first 20 minutes. Unfortunately this picture was taken about 2 hours AFTER that! Still pretty handsome 😉

Best helmet hair ever!

By the way, some little boy turns ONE very soon! Sound the alarm!!!!

Helmet Fitting, Part 2

August 16, 2013 by Kate

Let’s start by clearing up some misconceptions – I’ve heard so many in the past few weeks!

While the helmet may in fact protect Colten’s noggin from bumps, lumps and brothers, that is not the purpose of it. Someone out there does actually make little padded hats (they resemble the early version of football helmets, in my opinion) to protect babies during the early stages of crawling/cruising/walking, but that is NOT the case with this. Any “safety” protection he gets from this is just added bonus. Considering he tested this out by repeatedly banging the back of his helmeted head on a wooden kitchen chair on day #1, we are confident it will prove useful in his case. No, the helmet is not for protection. It is for CORRECTION. We are trying to get Colten’s head to stop elongating. It is very narrow side to side, extremely narrow in the back (should be wider), and resembles a football. (I am not intentionally referencing football here repeatedly but seeing as that season is upon us, maybe I’ll score some points with the husband). His head shape is called scaphocephalic, or you could say he has scaphocephaly. At least that’s how I’ve heard it used.

Here is Colten’s head, pictured about a week or two ago:

The helmet does not get cranked tighter, such as in the case of teeth braces or other orthodontic devices. The helmet will actually get slightly larger as we go, since his head needs to continue growing. What it does is provide a stopping point for the front and back growth. The helmet fits him perfectly front to back. By restricting the head from growing further in that direction, it forces the growth (hopefully) side to side. This should help reshape him into a more rounded head.

The simple question that I have been asked perfectly by no less than three children in the last 24 hours is: Why does he have that helmet on?

The simple answer is: His skull bones aren’t growing properly, so the helmet is going to help them grow the right way.

That was easy, right?!

Colten actually received his helmet yesterday. When we were taken back to the exam room, Mark, the orthotist, asked in a concerned way, “Are you ready for this?” I chuckled and said, “I think of all the devices this child may need, this is the one I’ll be best prepared for!” We knew he needed it, we knew it was coming, and we knew it would be a pain in the butt (figuratively), but that it shouldn’t be a pain in the head (literally). And we know it’s a temporary device. As for what other devices may be in Colten’s future, we have no idea. But something tells me it will be harder for us to start dealing with braces, walkers, crutches, or wheelchairs. Those aren’t necessarily temporary.

The helmet is a hard plastic shell lined with what appears and feels like a very dense foam layer. When Mark put the helmet on him the first time it fit great front to back. You could clearly see the open space left on either side of his head though. The helmet is shaped like a “typical” head should be shaped. Mark explained that he would fill the open areas with a very soft foam so that the helmet didn’t shift around. It needs to fit snugly. What he expects to see at the follow-up visit is this foam more condensed. This proves that Colten’s head is expanding into the foam areas – a good thing, and reshaping to conform to the helmet. As his head presses more into the foam padding, we can remove some of the soft layers to allow for more expansion in those areas. All the while keeping just the harder foam at the front/back. The head will continue to grow overall, it just is being restricted front to back.

After Mark placed the appropriate amount of foam, he placed the helmet back on Colten. Colten touched it a couple of times then went back to his toys. He grabbed at it once in the car as we left. Mark provided us a few pages of instructions, including tips on weaning a child into a helmet (small blocks of a couple hours on, then off, then nap time, then bedtime). The goal is to work them up to the 23 hours per day. Yes, that’s right, they get ONE hour without the helmet per day. Basically enough time to clean the child’s head and the helmet and let both dry! Colten was so amazingly cooperative I was curious how long he would last. I did remove it for about an hour shortly after his helmet appointment because he had treadmill therapy and frankly, forcing a kid to “walk” on a treadmill while wearing a helmet that makes his head sweat? That’s just cruel. We put it back on afterwards and he wore it the rest of the day. We took it off for another hour in the evening for a cleaning, and his brother Max managed to pull it off him briefly as well. We even put him to bed in it. And today he had it on all day except for one hour. Napped in it and is now sleeping in it. He seems to be stirring a bit more at night last night and tonight, but he’s a CHAMP. He has barely touched it all today and doesn’t seem to mind a bit. I have to credit Mark for making his helmet just right. He has one spot that turns a bit red on his forehead but the redness reduces shortly after the helmet is off. He seems quite content, don’t you think?!

Showing off his hockey helmet for the first time – side view:

Top and front view:

Quite content. QUITE!

Mark wants to follow-up in two weeks. Because Colten is already over 10 months, he doesn’t have a ton of readjustment time. A younger infant, 3-5 months, can go six weeks between adjustments because even if the reshaping isn’t perfect, there’s still time to adjust. Colten doesn’t have that so we need to keep tabs on the changes. Also of concern is that the reshaping doesn’t cause an issue with his shunt (for hydrocephalus). And that’s about it. We aren’t putting any time frames on the helmet because we’ve heard so many different estimates for how long he’ll be in it. My response to “how long” will be, “until his head isn’t reshaping any further.”

So from now until ???, Colten is officially “brother-proof” (yes, I know it’s for correction, not protection, but like I said, dual-purpose here!)

On a very off-topic note, a huge congratulations to my husband, Richard, who was recently offered a science teaching job at a private school on the east side of the state!!! SO VERY EXCITED FOR HIM – FOR US! We are in chaos mode here though, because our wonderful nanny is done working for us for the summer and Richard is commuting about an hour and a half each day for work (they started yesterday!) and I have quite a few projects I’m scheduled to be working on. So while I am excited to spend some more time with all these boys, I still have my own clients to tend to somewhere in there. We are looking to move sometime this fall so he can stop commuting, there are just a lot of logistics to work out: where exactly to move to, when to move, how to seamlessly continue servicing my local (Lansing-area) clients, what preschool to send Parker to, what sort of childcare help we’ll need, if we’ll get a second vehicle, and on and on and on! In other words, unless we have some major changes, I’m thinking there won’t be another blog post in a while. Let’s hope that’s that case, for our sake, right?!

Thanks for following along our adventure. We hope you are enjoying yours as much as Colten is enjoying his!

Helmet Fitting, Part 1

August 2, 2013 by Kate

The words that keep replaying over and over in my head from earlier today are “he should have been fitted MONTHS ago”. It’s like that song that is stuck in your head and you sing it all day over and over, the same lines, never really singing the whole thing. There are enough things with Spina Bifida Myelomeningocele that a mom can blame herself for. Now there’s this other whole unrelated medical issue that I can blame myself for not following through on earlier… Colten’s head shape. Although not for lack of trying – we attempted to address the head issue at Colten’s Myelo Clinic appointment around 5 months of age. The PM&R team said “we’ll check with our helmet guy.” We never heard back. Then we pushed our way into the Mott Craniofacial Department and insisted they look at his head. They ordered a CT. No fused bones, they said. Go home, make sure your 6-month old doesn’t lay on his left side (ha!) or arch his back and roll onto the top of his head (sure!). And if you really really really think you need a helmet referral, the nurse half-heartedly agreed to give one. WHICH I SHOULD HAVE TAKEN AND RAN WITH! But I didn’t. I said we would try to wait it out, as the professionals recommended. They know best, right? Maybe we were making a mountain out of a molehill I thought. No, in fact, we were making a football out of head. Colten was already beyond minimal misshaping at that point and should have been fitted back at 5-6 months of age.

Some days, it is very hard to figure out which medical professional to listen to. This experience reinforces the entire concept of “go with your gut” – I should have. If you’re reading this, YOU SHOULD TOO! Colten would have been in a helmet MONTHS ago had I just went with my gut and went to the orthotist back then. But we trusted the medical professionals. We trusted it might work itself out as he became increasingly mobile. So now we really struggle with what information to take in and what information to toss around or toss aside. Another example is the length of time Colten will be in the helmet. When we were at the last Myelo Clinic, the orthotist said Colten would be in the helmet “for a very long time.” When we asked, “What’s a really long time?” he replied, “18 months.” Looking back, it is now unclear – did he mean in the helmet for 18 months, or until 18 months of age? Based on the discussion with Mark today at the University of Michigan Orthotics & Prosthetics Clinic, until 18 months of age sounds more likely. Mark actually said that the bones are fused enough by about one (1) year of age that not much progress will be made past that. We found this interesting, since many others have said two (2) years of age. So Richard and I decided we would put NO expectations on time frame. We would sit back and see how adjustments were made, how much progress Colten was making, and when progress comes to a standstill, then the helmet comes off. We do have to remember that while most babies have a fontanelle that is closed by about a year of age, some stay open until almost two years of age. The fact that Colten’s anterior fontanelle is larger due to the expansion from his hydrocephalus at birth, could mean it will take longer for his to close up – meaning we might have more time than Mark is predicting to help reshape the head.

Either way, Colten was measured today for his helmet and will get it in about two weeks. Years ago, and maybe even still these days in some medical facilities, plaster molds were taken to get the current head shape. Now, more and more offices are using reflective technology and computer programming that allows for a laser-reading of the head shape and a computer generated mockup. From that data, a helmet is constructed that has foam (?) padding inside it. The padding is less in areas that the head needs to expand into, and is fuller in areas where pressure is needed to prevent further protruding growth. The helmet is in two pieces and connected by sliding screws and hook and loop (Velcro) straps. This allows the helmet to start small and expand a bit as the child grows. Colten will be measured every six (6) weeks down in Ann Arbor and the helmet will get re-adjusted as necessary by the orthotist.

To do the measurements, Mark put a stocking over the top of Colten’s head and his ears. Funny looking, but still a darn cute kid:

We put tiny reflective dots all over the stocking and a few on his facial points. The location doesn’t need to be exact, the computer program measures the dots and fills in the distances between them. In this picture, you can get an idea of what Colten’s head shape is and how long it is, how narrow it becomes in the back (should be wider in the back), and how uneven the sides are (one is rounding out, one is remaining flat).

This is what a typical skull should look like:

After the dots were all over, Mark scanned Colten with the laser. He LOVED the red light, which made trying to get the images of his backside very difficult! We loved Mark’s lazy-susan Bumbo!

And one of the computer-generated images:

Some people have asked if helmets are simply for cosmetic reasons. Sometimes, yes. Sometimes, no. There is a whole group of babies out there that actually do have their bones fuse. Sometimes, after surgery, they are also placed in a helmet to help finish the shaping of the skull. Sometimes, babies have severe torticollis, which is a tightening of a muscle in the neck I believe, that causes the child to always look one way or the other. This results in an imbalanced growth and development of the head and a helmet can help even it out. When a skull begins to get overly-misshapened, internal structures can be in jeopardy – jaw alignment, ear canal and alignment, eye sockets and alignment, etc… It is our current understanding, though, that brain development is not often impacted by skull shape – that the brain will grow into its “house” (except of course, if the shape of the skull caused an increase in inter-cranial pressure). However, for many kids in helmets, the shape is severe and if left untreated would cause obvious physical deformities. Is a physical deformity a bad thing? No – it is what it is. We do have a chance to correct it though, at a time when the child will not be bothered by the apparatus, and in a non-invasive, fairly gentle way. The helmet does not squeeze the head, it simply impedes the unwanted direction of growth and encourages the proper growth pattern. In Colten’s case, his helmet will have more open space on his left side and in the back sides of the helmet (I’m guessing), since those areas are where his head should be growing into and are not. The helmet will allow for less growth space in the front and directly in the back so that the football shape can be rounded out.

So, now we just wait. We have an appointment scheduled in about 2.5 weeks and we are trying to get that moved up to the two week mark, as recommended for fittings. We managed to get today’s appointment moved from its original date of August 27 to August 2, just by calling the clinic multiple times a day to check for cancellations. The receptionists were wonderful and kept moving our appointment up as openings were available until we really couldn’t get any closer! So we’ll keep trying to get in a little sooner to the final fitting. It kind of felt like hitting a weird lotto win each time I called and they could move us closer! I highly recommend this to any parent trying to see a specialist. Even if they put you on their cancellation list, it is easier for them to just fill an appointment with someone on the line than go through the list and see who can take the appointment, requiring them to make call after call.

In the meantime, apparently the “fun” of all this is that we can decorate it with stickers or something. I think we should take a black marker and draw skull lines on it. That would be amusing!

And lastly, Mark also checked Colten’s feet briefly and is sending the code for Kangaroo AFO’s to the insurance company. Once the approval for that gets passed through he can move forward with fitting him. That’s another story and dilemma for another day…

Lesson for the day: GO WITH YOUR GUT!

And not to leave big brothers out, they had a morning of fun at the park with Momma (Daddy took Colten to his treadmill session), followed by some special time with their Papa at the Ann Arbor Hands On Museum.

Helmet, Braces, and More Physical Therapy

July 22, 2013 by Kate

How can I not start the post with a picture when this kid is so photogenic?!

(Warning: this post is lengthy, but I scattered tons of pictures and videos throughout.)

This past Thursday, Colten had his 9-month checkup with the Myelomeningocele Clinic at U of M C.S. Mott Children’s Hospital. At the Myelo Clinic, each patient is put into an exam room and stays there for about three hours. There is a sign outside the door with a long list of departments, such as Neurosurgery, Urology, PM&R (physical medicine & rehabilitation), PT, OT, Speech Pathology, Neurology, Orthopedics, Social Work, and a few others. Each department goes one by one into the rooms. This saves us from having to coordinate multiple appointments – we see everyone we need to see all in a three hour time frame. We’ve been pleased so far with this setup because it gets all the important reviews over and done with. Follow-up appointments are setup as needed and the doctors all seem to truly take their time with Colten, answering any and all questions we bring that day. I think as Colten gets older, it may get more challenging to keep him contained in a single room for three hours, but the Child Life Specialists at Mott are very helpful – they can bring games, iPads, videos, crafts and other things to keep him occupied. Also, the frequency of his appointments will go down to about every six months after he turns a year (hopefully), then possibly just annually after two or three years of age.

The whole family trekked down to Ann Arbor for the most recent appointment, but just Colten and I were in the exam room. Richard had an interview at a school in the area and needed some time to work on a final paper for a class. The boys were occupied by my sister, Sarah, and my mom joined Colten and me for the appointments. A second set of ears is always helpful and she was excited about getting to go through Clinic with us.

Colten loved playing with his Grammy!

Sidenote: Because I could not find this information searching online, I wanted to post it here in case other families are ever looking for it! The indoor playground at U of M Mott Children’s Hospital in Ann Arbor is open at 8:00 AM every day. Children must be accompanied by a guardian. There is a playground, activity centers, action figures, arts and crafts, books, games and more there (I don’t remember if it’s on floor 8 or 12 but I’ll try to check and get back to adjust this if necessary). Also, there is a Family Center that allows you to drop off siblings from 1-4 PM. This is free care and while they prefer children are potty trained, supposedly they will accomodate if possible. They also have games, books, crafts, snacks and more down there. That is on the 2nd floor – or main floor of entry, near the gift shop. AND, if you have an appointment or are admitted, you can get free passes to the Ann Arbor Children’s Hands-On Museum for the day for your family, just ask either someone in Social Work, Family Life, or at the reception desk.

Onto the Myelo Clinic!

Neurosurgery was first and was pleased with Colten’s progress. His incisions are healed up nicely, his fontanel is still open and isn’t filling up with fluid, and there is not much new to report on that end. I made sure to mention Colten’s lip quivering to Dr. Ramnath. It’s not that abnormal, but most babies lip quiver early on and grow out of it by this age. Colten usually only quivers when crying (more typical) but sometimes it just happens. Dr. Ramnath said as long as it is short-lived and no other symptoms occur simultaneously, it’s just him. We should always watch for the possibility of seizures but at this time, we don’t need to worry about the ongoing lip quiver.

Next up came Social Work. They are a great resource for putting us in contact with the necessary agencies or answering questions when it comes to Colten’s insurance. The social worker was also the one that informed us of the free childcare at Mott through Family Life (1-4pm), and the free passes to the Ann Arbor Children’s Hands-On Museum. Thanks Jeff!

Interruption for cuteness – he loves black beans (thanks to our nanny, Chelsea, for capturing this great picture!)

PM&R came in next, but since they were the group with the most information and changes, I will come back to them in a minute… Urology followed and we are fairly status quo there. Colten has follow-up tests in October to monitor his kidney reflux and bladder emptying. They explained some procedures that could be in his future that I won’t get into now because we just don’t know! More to come in October in that department.

Onto the BIG changes now. We expected that this visit with PM&R would result in some big things due to his age and some changes and sure enough, it was loaded. Dr. Green is very happy with Colten’s quad strength and wants to capitalize on that sooner rather than later. To do this, she wants him in braces and is recommending Kangaroo AFO’s (ankle-foot orthotic) first.

Kangaroo AFO’s

Because he is so young and growing so rapidly, these AFO’s are sized instead of fitted so he can wear them for a few months then move to the next size until he is ready for custom-fitted AFO’s. Since he is only using them for therapeutic purposes (standing/weigh-baring exercises and activities), not actually walking, he will wear them rarely and the cost for custom-braces is rather high. Colten is not showing any indication that he wants to stand and is moving around wonderfully on the floor on his own by rolling, sitting, twisting and rolling some more! So he will use the AFO’s during therapy sessions, which Dr. Green wants him to amp up now. He will go to an outpatient physical therapy program, hopefully right at Sparrow Hospital on Lansing, 1-2 times each week, in addition to our wonderful EarlyOn PT who comes to the house once every two weeks. We asked about using a taping system instead of braces, which we might try just to see how he responds or what he does, if anything, with that. Dr. Green said she feels it will not offer nearly enough support for him to be productive with it. She also noted that taping or bracing will NOT assist him in crawling and he should not wear either during floor time since braces tend to force the foot into outward positions, which forces the knee then the hip into outward positions. Our EarlyOn PT had also suggested we ask about parapodiums, or standers or a swivel walker. Dr. Green said Colten’s not ready yet and she doesn’t prescribe them a lot. She wants him to continue exploring his strengths on the floor. The outpatient PT may use that equipment during therapy sessions but it’s not something we need to use at home for the time being. That was great news for us, as we feel strongly that he needs to further his strength and mobility on the floor still and he isn’t frustrated by his lack of crawling, standing or anything else at this point. As you can probably tell from most of his pictures, he is quite content (putting it mildly)! And he is certainly figuring out how to move around!

I pieced together some videos to show how Colten is actually moving around these days, as many have inquired about that:
[ http://www.youtube.com/watch?v=NYlgcpRm9G0 ]

Also during the PM&R session, we talked with an OT (occupational therapist). In the simplest of terms, we can kind of think of PT as large motor skills (walking, climbing, etc…) and OT as fine motor skills (pinching, grabbing, eating, etc…). Colten’s chocking and gagging has been a concern of ours recently and is a common symptom of the Chiari II Malformation. While his Chiari Malformation is minor, it is quite possible the chocking and gagging is caused by that, not just his age. He is super sensitive to textures in his food – too thick or chunky, or even too thin (water). The OT suggested doing a swallow study, and giving him more exposure to sensory bins. Apparently playing with multiple textures with hands is helpful for the receptors in the mouth as well. Those areas of the body are very connected in the brain. So instead of jumping into a swallow test, we decided to give it another three months and let him get a bit older and explore the tactile world more to see if we can help him overcome this.

Sensory bin play – spaghetti noodles in water

We are not done yet! Colten’s head then became the focus of discussion. They noted the extreme scaphocephaly (elongated front to back), the still flattened left side, the narrow back/wider front (should be smaller in front, wider in back) and the unevenness of his ears. The “helmet guy” was with the PM&R entourage and would have liked to fit Colten THAT DAY for his helmet. There were no open appointments so most likely we will head back this week for a fitting, then back again when the helmet is ready. Usually scaphocephaly is due to fusing of the plates; we know Colten’s are not fused after getting a CT Scan a month or so ago. Another reason for scaphocephaly, or any misshapen head, is “position”. While there are MANY reasons a baby might wear a helmet, one of the more common reasons is due to “flat head”. With the Back to Sleep campaign, babies are placed on their backs to sleep or whenever they are given floor time. If babies are not rotated, if they roll late, are left on their backs for an abundant amount of time, the back of their head flattens out. Depending on circumstances, this can sometimes self-correct as babies begin to move around and aren’t stuck on their backs. If it doesn’t correct, helmets are used. In some cases, parents choose to go with a helmet for cosmetic reasons. Some cases are severe enough to alter structures and cause issues within the head though – vision problems, hearing issues, jaw alignment, etc… Helmets are most effective when started under about 8 months of age. The longer you wait, the longer it takes to fix. (You may recall that I noted the misshaping at Colten’s 6-month appointment but was kind of blown off.) Scaphocephaly is much harder to correct using a helmet – and we were under the impression it may not even be possible to fix with a helmet. U of M to the rescue though – according to Dr. Green, as U of M INVENTED the helmet, they know it can be used for correcting non-fused scaphocephaly too! So a helmet it is. The hardest part to swallow was when the therapist told us he would wear this for 23 hours a day (we knew that going into it), for EIGHTEEN MONTHS. Eighteen months! Colten will be almost 2 1/2 years by the time this comes off. In the end, it doesn’t matter. We know his head is very elongated and not right at all. We already see the structural issues in his ears, and the past two days his eyes are starting to track differently. So we know this needs to be done to prevent internal cranial complications and if we could go back and start it at 6 months, we would. I mentioned the oversight on Mott’s part to the PM&R team, I told them how the nurse from the Craniofacial clinic told me to just work on adjusting his positioning – and how I felt that was ridiculous for his age and for the most part impossible. They fully agreed on that (which made me happy, but then angry that we didn’t just do something faster then) and said there is absolutely no way this will self-correct and it needs to start ASAP. Colten will still go to his cranial sessions with Dr. Grimshaw – we hope his work, in conjunction with the helmet, results in a shorter overall time period that Colten needs to be in this helmet. Adjustments take place every six weeks at Mott for the duration of the helmet-wearing period. As you can guess, we’ll post again after his fitting. As of Monday, we are waiting for the out-of-network approval from the insurance company so we can do this at Mott where the rest of his care takes place. Yes, it’s more driving, but they handle everything else so it seems to make sense to continue working with that team.

At the helmet fitting, they should also be doing the AFO fitting, so I’m sure the next post will be full of interesting pictures!

We topped the day off with a visit to the University of Michigan – Department of Neuromotor Control. This group runs the treadmill study he is a part of and since they see him every other Friday, we figured we would save them the drive to Lansing and do his biweekly visit a day early, at their location. It was Colten’s last day with Dokyeong (I am sure I’m spelling it wrong!). She has been one of the main researchers on the study – very involved, very helpful, and great with Colten.

On the treadmill with a smile – this is rare!

Here’s a video of Colten practicing on the treadmill at 9.5 months:
[ http://www.youtube.com/watch?v=t8miXmLcQz8 ]

As comparison, if you’re interested, here he is at about 3.5 months:
[ http://youtu.be/Owutb0Ukrrw ]

I’ll wrap up with my boys’ summertime version of President Reagan’s “Trickle Down Economics”. Poor Colten…

And one last peek at this cuteness… And a special thank you to Shöne Photo (Howell, MI) for donating a wonderful photo shoot to Colten after he was born! Thanks Meg!

Jumping Bean

July 13, 2013 by Kate

When a doctor tells you your son has no motor or sensory response on his legs at all, it is pretty damn awesome to see him use a Johnny Jumper! We have not used this much with him because the treadmill study folk want us to avoid use of it until after he’s done with the study (at around 13 months of age). Richard put Colten in it the other day while the boys were playing in the basement and he loved it! Now the setup in a Johnny Jumper is such that you need to have the seat hanging at a height so the child’s feet are just touching the ground. When we did that, Colten did not seem to react much and became rather frustrated [ see video ]. When we lowered the seat a bit so his legs bent more, he just jumped away [ see video ]! We’re interpreting this to mean that he really isn’t getting sensation through the bottom of his feet. When the top half of his leg is bent upwards though, he senses that change and attempts to straighten his legs out. You can tell by watching the two videos that the “push” seems to be driven through the knees/thighs as opposed to his feet. Either way, he is JUMPING! That’s pretty awesome!

(And happy belated Fourth of July!)

And speaking of treadmill study stuff, he had another big testing day a couple weeks ago. The team brings all this equipment, their own treadmill, cameras, computers, and other measurement devices. He had one day a few weeks ago where he actually did take 2-3 quality steps. Alas, not so much for the big testing day. He does bring the left leg forward in a good step every now and then, and even will pull both legs up and forward together, but his right leg gets caught up behind him and prevents him from taking a forward stride with that leg. Children with myelomeningocele often have weakened hip muscles which makes taking steps difficult to begin with. It also makes it hard for him to pull his right leg away from getting caught behind the left. Over time, he will work on this strength-building and hopefully be able to figure that out.

He’s just so darn happy cuddling with Daddy!

At nine months, Colten is rolling around to get where he wants to go. He can twist himself into a sitting position and is starting to rock back and forth while side-sitting. It’s a precursor to crawling for sure, he just has a long way to go still! The great reinforcer in all of this is that his movement patterns are exactly what he’s been learning in his Anat Baniel Method sessions! The only other new movement is that now he sometimes fall straight backwards again. I think he’s getting a bit too confident in his butt-rocking movement and just topples himself too far back.

How does that compare to a typically developing child? Nine months is an age where many babies are crawling, some can stand up while holding onto furniture, and if placed in a jumper, can jump enthusiastically for quite a while. So that’s that. We do a fairly good job of just comparing Colten to Colten most days. Most days.

Enjoying water play at Impression 5, a hands-on science center in Lansing.

In more update news, Colten has had two cranial sessions now. His head is no longer shaped like an extra-oblong oval. Well, it kind of still is – but it is also now shaped like the letter D! The work Dr. Grimshaw is doing appears to be helping the right side round out. The left side – not so much. Colten has his third appointment this week and we are anxious to see if we just need to follow through the full round of recommended appointments or if we need to pursue other/additional therapies.

Today’s post is brought to you by the letter D!

Besides that, we are watching him closely these days as choking and gagging seem to be more and more prevalent. Anything too thin (water, his own saliva!) or with the slightest chunk in it at all and he is gagging easily. While this could just be a combination of food textures and getting the hang of it and teething, choking and gagging easily can be quite common in children with Spina Bifida due to the Chiari II Malformation. His malformation is “not that bad” so we are hoping this is just a phase. To be on the same side, we are avoiding too-chunky textures and trying to keep things pureed as much as possible.

That is all for now. I have a couple more posts related to some general questions people have asked, so watch for those to come, along with something else at the end of this coming week. Colten has a cranial appointment and Anat Baniel session on Tuesday, then the myelomeningocele clinic rounds and a treadmill appointment on Thursday. Hope your week is just as enjoyable as ours 😉

Hello from all the little men!

Clapping, Rolling, Signing & Sitting

June 24, 2013 by Kate

Bet you were wondering if we would go a whole month without posting… NOPE! Life has been very chaotic around here and I just have not had the frame of mind to sit and blog. As I sit in the older two boys’ room this evening, fighting my third bloody nose of the day, sweltering from a broken air conditioner as the thermostat hits 85+, I’m attempting to find that frame of mind. Good luck making sense of what might spew forth from here…

Without reading my last post to see where we left off, I’ll go off memory (laughable) and try to provide an update of the past few weeks. About three weeks ago, Colten had his first appointment with Dr. Grimshaw, a well-respected doctor in the area that spent years working with pediatrics at the MSU Osteopathic Manipulative Medicine facility. He went on to startup his own clinic with a variety of related providers. When I was unhappy with the Mott nurse blowing off Colten’s head shape with seemingly little regard for his habits and growth pattern, I proceeded to seek out a second opinion. Many people suggested Dr. Grimshaw, including the Anat Baniel practicioner we see on a weekly basis. So we put a call in to him, he agreed to see Colten and were able to get in the following week! Our first appointment lasted about 90 minutes. I had typed up an extensive document (many of you are saying to yourself now, “of course you did!”) outlining Colten’s medical history, and a list of things we did that encouraged proper head growth, a list of things happening that probably did promote the misshaping, and our concerns about why we felt just leaving it alone wasn’t necessarily the best option for Colten. Dr. Grimshaw read the notes, discussed everything with us about his history and said that he felt the nurse was right in not outright recommending a helmet – that his shape, while certainly abnormal, may not be able to be corrected by a helmet. However, he did NOT agree that we should leave it alone. We had an opportunity here to help him self-correct, in a way.

Dr. Grimshaw proceeded to explain to us as he worked on Colten that there is dura between the large skull plates. This dura is very pliable in infants and toddlers – up through about two years of age. The skull itself is still shapeable, to an extent, up to about seven years of age. Babies have fairly flat seams between the skull plates; as we age, the skull bones kind of “zipper” together. There is still some slight movement even as adults (he demonstrated on Richard!), but the bones are positioned in a way that re-shaping would be impossible as an adult. So we have until about two to make significant progress, and until about seven to continue work. As Dr. Grimshaw worked on Colten – it almost looked like a targeted, deep head massage – he said that his dura (the material in the space between the plates) did seem extremely tight for his age. His goal is to loosen that up and encourage the plates to shift a bit so they better align and round out. At this point, Dr. Grimshaw has recommended seeing Colten every 2-3 weeks, for 4-6 visits. Some people have asked if we can do more to help at home, or see him more often – if either of those would help. It is our current understanding that doing more will not actually help – we have to give his head a chance to respond and see how his head changes from appointment to appointment (Dr. Grimshaw took some preliminary photos). Here is a picture of Colten paying no attention to the appointment at all, just being fascinated by the sink water. He was starting to get fussy during the appointment and the doctor just moved him to his lap, slid over to the sink and all was good for about another 10 minutes there.

We also asked Dr. Grimshaw if we needed to readjust how Colten slept (always on the left side), or try in some (unrealistic) way, to prevent him from arching back on the top of his head and his butt (this is exacerbating the top back flat spot), etc… It was nice that he agreed these were near-impossible things to do and we just have to work around them. One suggestion he made was to switch his carseat to stare out the window. We have a Jeep Liberty and the only way to fit three carseats in the backseat is to get three Diono Radian seats, or two Radians and an infant carrier seat – which is what we have. The hard part is that while rear-facing, that infant seat only fits well in the center seat. Parker was positioned on Colten’s left, and since Colten adores Parker and loves to laugh with him, we thought switching the older boys seats might encourage Colten to turn his head the other direction to see Parker. Nope, now he is just as amused by Max, or tips his head even further and up to see whoever is in the front passenger seat. So good thing Dr. Grimshaw is so understanding of the realities of life!

After Colten’s first appointment, he went from sleeping like a magic-sleeping-child, to a not-so-magic-sleeping-child. He seemed a touch fussier for a few days as well. At his ABM lesson that weekend, Bethany thought those were actually good signs. It might have been a little uncomfortable to have his skull worked on and if the plates were starting to shift and he was sensitive to that, it could have caused the lack of sleep and mood changes. I feel like his head shape has indeed changed, in some areas for the better, in others for worse. He has another appointment this week so we shall see!

Moving on to more exciting things 😉 Colten is certainly hitting some fun milestones these days! He claps – first with both hands clenched and now with just one clenched. This has also led to us working on some signs with him. We have used sign language to promote early language with all of our sons and it is always exciting when they first sign back. Sure enough, this past week, Colten signed “MORE” after much encouragement, and some delayed spoonfuls of food! [watch video] Colten continues to roll to where he needs to get – and rolls more often in both directions now. And today – HUGE stride, he got himself from back to belly to SITTING. ROCKSTAR! This is a picture from just a few moments after he did it the first time…

We have been working on this daily for months, just to encourage him to use and strengthen his arms. Bethany (ABM practictioner) has been teaching him weekly how to better use his arms and roll his hips and use his trunk to move around. She encouraged us to, every time we get him up out of his crib, roll him to his side and slowly pull one arm up. This prompts him to put his other arm out and kind of push up as we pull up. And this is exactly how he gets himself to sitting! I wasn’t able to get a video of the full sit-up movement – just this one where he gets stuck with his legs crossed. His weak hips and lack of feeling and movement in his feet seem to make uncrossing his legs very difficult. You can also tell in this video how much less he uses his legs while sitting compared to laying down.
http://www.youtube.com/watch?v=Somdrf_XGtA

Moving forward, he has a big clinic appointment in July at Mott. One of the big focus points will be with the PM&R doctor (physical medicine & rehabilitation). Our EarlyOn physical therapist is recommending we get Colten fitted for his first set of AFO’s and see about getting him a stander.

What are AFO’s? “Ankle Foot Orthosis” This is a brace that goes under the foot and up behind the leg to just below the knee. From our limited understanding, they have some that are “static” and keep the foot in a particular position, and others that have a hinge at the ankle. It appears you can get them in pretty cool designs, so that should add an element of fun to the whole thing I guess?! It is possible Colten will eventually need an AFO on one leg and a KAFO on the other leg. A KAFO is a “Knee Ankle Foot Orthosis” – same concept as an AFO, but goes up above the knee to the thigh.

What is a stander? While I’m not sure what kind Colten will need, there are a lot of variations depending on the needs of the person using it. This is an example of one such stander. It has straps to put the child in a standing position (creative naming here) with proper supports, and a tray to put toys on to engage the child. Some standers allow for leaning backwards, some forwards. Some have small wheels so they can be moved around, others have large wheels high enough that the child in the stander can use them like a wheelchair. Here is one example:

Colten is finally bearing some weight when held upright into a standing position. He will do upward squats for a few minutes and this is huge, as he was not bearing any weight at all previously. I say upward because he pushes himself up (with our assistance of course), but then just collapses down – he doesn’t squat down gradually. Weight bearing builds bone density and we want that! We want him to have a strong foundation. There are also many non-standing things we work on that help with bone density (including his treadmill study through the University of Michigan). And while we are not convinced he is ready for standing per say, it can take a while to get them so they’re encouraging us to start the process at the next appointment. We shall see. We don’t want to rely too heavily on equipment this early and take away Colten’s time to get acquainted with his own body and how he can use it to the best of his ability. We aren’t super concerned about him keeping up with the major age milestones – we more want him to have a strong sense of self and the ability to use his body to get around. That’s a big part of why we love the progress he’s making with the ABM lessons.

Other than that, this kid is still happy as ever! Thanks for staying tuned!

Head CT Results

May 31, 2013 by Kate

Before I get into the nitty gritty about the CT scan, Colten would like to share a few accomplishments! Today he figured out that when he rolls over, he can roll over another time and get to more toys that his brothers have left strewn about. Funny thing is that he really only rolls onto his right side when going from back to belly so he kept rolling the same way until he could not roll any further! He is also exploring his balance while sitting and doing much better catching himself when he tips. Some of you have asked how his rolling is going so I took a video today. You can clearly see how much he favors rolling the one way and not the other.
YouTube Video: http://youtu.be/HzfRcML3q6s

(Enjoy this picture – it’s the only one in today’s post!)

Now the CT scan. The nurse from Mott’s cranio-facial clinc called us with results on Wednesday: Colten’s sutures (the edges of the skull plates) are NOT fused where they shouldn’t be. He does have some fusing in the typical parts that should be fused, and the parts that should still be open are open. Hearing this information was a mix of excitement and disappointment. I know. Weird. Excitement because craniosynostosis surgery is very scary to think about (any surgery with a child is scary – but removing the skull from the head and reshaping it makes my stomach turn) and we certainly are happy to be avoiding another surgery (for now). Disappointment because of how the nurse proceeded to talk about things. Let’s just say that this nurse and I didn’t hit it off at the very first appointment, when we brought Colten to clinic to have his head shape reviewed. She came in and looked him over and pretty much dismissed our concerns. Looking back on it, there were a lot of questions she maybe should have asked and there was a piece of glaring advice no one gave us. More on that later.

So after she tells me the sutures are open, she informs me that the doctor does agree he has a very unusual head shape for not being a preemie, yet it will probably round out over time and that we should watch his positioning. I asked questions and really, doubted what she was telling me. As Richard explained to me, I hate to be wrong (so true) and the fact that she was telling me my son’s head was going to be “fine” when clearly it is misshapen and I’m not confident repositioning will help at his age, was pitting me against her. We talked about the other option for correction – a helmet, or band, and she reinforced that it’s “just a cosmetic problem” and seemed to reluctantly agree to put in a referral to a helmet specialist.

It bothers me somewhat to think that when a medical professional tells me something, I can’t just always accept it for what it is. However, this has been a struggle since we were first told about Colten’s Spina Bifida Myelomeningocele. At first they said it was “really low – sacral, probably just bladder and bowel issues”. Then he was born and they said, “he cannot move or feel anything in his legs at all – just a little in his right quad; he will never walk”. Colten clearly falls in the middle of those two statements. When I took him to the Mott Children’s ER two weeks after his shunt was placed, when we thought it was malfunctioning, for two to three hours they hemmed and hawed and told me at least twice, “well, we’re probably sending you home, we don’t think it’s a shunt problem”. It was a shunt problem. I’m glad there’s such a thing as “Momma’s gut” (well, I’m glad there’s a figurative one, not so happy about the physical one), but I don’t like that it’s gotten to the point where I second guess so much. And I’m not second-guessing the suture status, I’m more second-guessing our other options. As I said, the nurse seemed to think leaving it alone was good enough.

Here’s why Richard and I are having trouble accepting that as the final answer…

Colten was born full-term, not a preemie. This head shape is more common in preemies and often can self-correct in them if positioning techniques are used. Positioning techniques (laying the child on the right side for one nap, the left for the other, etc…) are most effective prior to six months (I’m not taking the time to cite right now but let’s suffice it to say that I reviewed a number of medical websites yesterday).

Colten avoids his shunt side of his head and has since the shunt was placed. When he lays down to sleep, he instantly rolls to his left side. Always. And falls right asleep. As third-time parents, we know better than to mess with a good sleeper and we never fought him on this. Personally, we felt it would be uncomfortable to sleep on the shunt side. We don’t know because we don’t have one but that was part of why we never forced him to change position. Looking back, we should have tried harder. We used to switch sides with him when laying him down, before his shunt was placed. Then afterwards, we all seemed to just avoid that side of his head and never thought back to “flipping” him. Had any doctor looked at his shape and asked us about sleeping patterns early on, we could have attempted positioning techniques. As I said, not as effective anymore. And, since it’s so ingrained in him to just turn over to his left for sleeping, positioning would be less effective now. We could start him on the right, but he’s able to turn himself any way he wants now.

One of Colten’s other strikes is his motor development. Younger babies may grow out of the odd shape more easily because as they start to roll and move onto their tummy and sit up, they are on their heads less. At an earlier age. Because Colten is just now starting to roll around and sit up, he’s getting farther from the easier shaping age and at a slower pace.

Babies that spend a lot of time laying on their backs are more prone to this misshaping. By the way, the term for this is plagiocephaly (“flat-head”) and there are various additional terms medical professionals put with that term to help describe which area of the head is flat. Colten spent much of the first few months, the critical head shaping time, upright in a carrier without much pressure on this head – compared to a child that spends tons of time laying flat on their back. While that is a good thing, it probably means that his shape started to take root in the womb when he was breech (this is a common contributor of plagiocephaly according to those many sites I was reviewing yesterday). It did not seem to get better after the first few months of life, despite being upright in baby carriers.

Colten’s balancing act – where he arches up his back and balances on the back of his head and his butt, has either been the result of or cause of a very flattened spot at the uppermost back of his head. A lot of kids with “flat head” are flat flat on the back. Colten’s flat spot is up higher and then the base protrudes out. This is not getting better because as he learned how to do this, he does it more and more and more. Even though he has started rolling, that arched back is his most favorable position when laying on the floor playing.

So all of those factors lead us to believe that if his head is going to round out, it needs some help. We are pursing two recommendations: cranial sacral therapy (a very light touch manipulative therapy that helps the body realign and reset) and a molding, or shaping helmet. There is a doctor in Lansing that has worked with other children combining both therapies to get kids out of helmets faster. When wearing a helmet, they are to be worn for 23 hours a day. How long (weeks/months) a child wears a helmet has to do with age and severity. And helmets are ideally started between 4-6 months. They take longer to help if started after 10 months, and are typically not prescribed beyond 18 months. So in our opinion, if we want to get this done, we need to start ASAP (Colten is 8 months). We at least want to have a conversation with another doctor about this option.

In regards to the “it’s just cosmetic” statement the nurse made, that seems to be debated. While it could be “just” cosmetic, a severely misshapen head can cause issues with glasses (uneven ears), bike helmets (we are avid bikers and he will need to wear one!), and in some cases, issues with teeth, eyes and ears. Then there’s the fact that Colten is going up against a lot already. If we can gently help shape his head, it’s one less thing he has to carry in his load throughout life. So we are hoping to set up some appointments in the very near future to see how we can help him.

Last couple of random things… A huge thank you to those incredibly generous souls that joined our “tribe“! We are touched and we look forward to providing Colten with adaptive equipment and toys as he gets older. We will be sure to post more about that when the time comes.

I stumbled upon this website that makes custom dolls for special needs kids. I wanted to post it here so I remember it when Colten gets a little older and we know his bracing needs, but also to share with other families on similar journeys that might be interested! This woman is doing some amazing work that is reaching out to children in such a unique, personal way!
http://www.karenskottage.org/SpecialAngel.html