CT, CMG and DXA

May 28, 2013 by Kate

Amidst all those crazy abbreviations for medical exams, today brought a weird allergic reaction, a pending test result, a fairly good test result, a series of unknown data, and an interesting observation. Oh yes, and a run-in with my favorite Mott buddies! Warning… this post is ridiculous in length. As in you might need to read it in chapters. I tried to scatter in a lot of pictures for your visual pleasure!

I want to preface the next section with a quick background about today’s alphabet soup of appointments and how they came to all be clobbered together on the same day. A few months ago, Colten had a follow-up with Pediatric Urology to see how his bladder was emptying. Because this can be such a troublesome issue for so many people with Spina Bifida, it is monitored very closely. Not emptying a bladder can cause recurring UTIs, kidney infection, renal failure and worse. Many people with Spina Bifida have to catheterize themselves (or their parent/guardian does) on a regular basis. So far, Colten does not need to be cathed. At the followup back in February, Colten was having none of it. They couldn’t even get the test done. So it was pretty important that we succeed at getting some data at the next followup. Then, in March, we had concerns about his head shape and the Craniofacial team decided the only way to truly know if there was premature fusing of his sutures (the point where the skull plates come together) was to do a CT scan, which required sedation. I called Mott after getting the CT appointment notice and requested we move it to the same day as the Urology exam. That way, Colten would be groggy from sedation and might cooperate a little better for the CMG (cystometrogram). Mott worked it out between the departments and we were good to go. THEN, Colten was down at Mott on May 9th for a treadmill study 6-month evaluation. This included a bone density, or DXA scan. Apparently the scanner was not set to the right settings and they called to ask us to come do the scan again. Since I was going to have him at Mott for other things, I told them I could make it work on the 28th. They were able to get the scan scheduled and voila – all three tests in one day. So that is how we came to today… (the following picture isn’t from today but it’s so cute I had to find an excuse to share it)

Colten and I left Lansing around 5:45 AM and arrived to Mott Children’s Hospital in Ann Arbor around 7:20 AM; a couple pit stops along the way made the trip a little longer this time. Colten was only allowed clear liquids after 1:30 AM, and since he is a wonderful all-night sleeper, his last bottle was at about 8:00 PM last night. So when I roused him early this morning, I gave him a bottle of diluted apple juice and off we went. Colten was scheduled to do a “trial” CT scan without sedation first. Anytime the medical staff can avoid putting a child under two years of age out, they’ll attempt the non-sedated version. If that didn’t go over well, the regular CT with sedation was scheduled for 9 AM. Colten was called back around 8AM for the trial. We went into the pre-op area for vitals and to wait for him to be transported to the scan room. Colten was in a good mood (how could he not be – he was hopped up on juice! more on this later) playing in the lobby and back in pre-op. He was quite the charmer and all the nurses that walked by did a double-take at him sitting up in his bed, happily chewing on cables or playing with toys.

The anesthesiologist came to talk to me – and I really felt they were trying to dissuade me from trying the CT without anesthesia. I wasn’t happy about just giving that option up, so we discussed how it would all go down. My options were laid out like this:

Try a CT without sedation. Succeed! Have to do urology exam without sedation though…
Try a CT without sedation. Fail. Sedate him. Do a SECOND CT under sedation. Start urology stuff under sedation.
Go right to sedation. Do a CT, then start urology under sedation.

As I said, Colten was up and energetic. Watching him, I knew we had a very small chance of getting him to lay still for 7 seconds. Perfectly still. So I finally agreed that trying it without sedation was not necessary. I was pretty much choosing between either 2 CTs and sedation, or 1 CT and sedation. We agreed that 1 CT and sedation was better on his little body. While sedation is risky, radiation has more long-lasting adverse affects on the body (from what I understand). After I was confident in this decision, the nurses continued with vitals and the anesthesiologists started to talk through things. Suddenly, I noticed Colten’s right arm was bright red, a little puffy looking, and hot to the touch.

Everyone stopped what they were doing and we looked him over. Now his cheek was getting red and warm. He didn’t seem bothered by this but an allergic reaction is not something you want to have prior to sedation. If his airway was swollen at all and sedation had complications, they would not be able to help him very well. We hemmed and hawed for a while. Then this conversation occured…

Nurse: I’ll put in an order in for Benedryl and Tylenol.
Apparently I responded with a quizzical look or something…
Nurse: Has he had issues with Tylenol before?”
Me: No… but why Benedryl AND Tylenol?
Nurse: Usually in this situation we do both.
Me: But he’s not in pain and doesn’t have a fever. So I’m not sure what the Tylenol is for…
Nurse. Hm. That’s what we always do. But I’m not sure how it would help him! I’ll just do the Benedryl.
Me (to myself): Damn straight. Don’t drug him up just because!

So we got him on Benedryl, which the hungry boy took right in. Hesitating to do anesthesia now because of this weird reaction, the staff agreed that we would try the CT without sedation first. We hoped the Benedryl might make him a little sleepy and if we could get him to just fall asleep, it might actually work.

Here’s Colten on his way to the scanning room, showing off his perfected balancing skill (flat spot on head and butt!) and laughing at the anesthesiologist:

I’ll spare the details of the non-sedated trial. It didn’t work. However, the gentleman running the CT scan didn’t even do the trial. He patiently waited to see if Colten could stay still and said he hated to dose him twice, so if he didn’t feel like he would stay still long enough, he simply was not going to run it. He would wait till he was sedated. And he did. So we did kind of try, and Colten still got only one dose of CT radiation.

Onward… As Colten was taken from the scan back to recovery, the urology nurse met him there and was able to get the catheter in while he was still mostly out of it. Yay! Then they ran their test. Mostly what they’re looking for is how the bladder fills and empties. They drain it, then fill it up with fluid and see how it responds. Because the nerves to bladder, bowel and sexual function are at the lowest part of the spine, it’s almost guaranteed that every person with Spina Bifida will have problems in those areas, to varying degrees and manageability. As I was brought back to recovery to see Colten, I could hear him crying – he was up and NOT happy and very hungry. Or not. He only drank a few ounces that conked right out in the carrier on me. We got out of there and headed to the Pediatric Urology Clinic for the results with Dr. Wan. He did a great job explaining bladder function to me and hopefully I can relay it here, for those that are interested. Let’s imagine a balloon… if we fill it 10% with air, it has very low pressure and would be hard to pop. If we fill it 90% with air, it has high pressure and the walls are taught and it’s easier to pop. In a person without spinal cord issues, the bladder is NOT like a balloon. It doesn’t matter how much we fill it, 10% or 90%, the pressure will remain pretty stable. In a person with spinal cord or neurological issues, the bladder pressure does increase. This increase in pressure can cause uncontrollable leakage or various issues with the kidneys. Thankfully, that’s about all we need to know right now because Colten’s pressure point (?) is a little high, yet acceptable. It’s not necessarily in a normal range, but it’s good enough that we don’t need to worry about changing what we are currently doing (which is nothing!). We go back in six months for another kidney/renal ultrasound (checks to make sure the reflux isn’t damaging the kidneys) and another CMG. Colten will remain on a daily prophylactic dose of Bactrim to help ward off UTIs. We are exploring more natural options for this and finding a lot of mixed reviews and results.

Now we had some time to kill before the 12:15 PM DXA scan. Thankfully, company was in the building! First, the backstory (because this post isn’t long enough?!). I can remember back to the day we had our first initial ultrasound, to determine why our baby was breech. We had a generic finding: mass in the lower uterine segment. Richard and I went home thinking I had some weird mass on ME (besides a very pregnant belly). That night, I had trouble sleeping – I was anxious about the diagnostic ultrasound the next morning. Browsing Facebook, I stumbled across my friend’s new blog about his daughter. He had started the blog September 14. In just those three days since then, the doctors at Mott had discovered and removed a large tumor from her brain. This little girl was fighting for everything she had. I read his posts and was amazed at how he and his wife were doing all of this. How Ami was doing all of this. I cried for them and for her. I remember thinking, how do parents DO that? How do you watch your child go through all this, and still manage to stay sane?! How can they be that strong? I could not imagine what they were going through – and I still cannot. Little did I know that we would be placed in a situation the very next day that required all of our strength. Jason and I had not spoken much the past few years – our friendship actually dated back to my years at MASSP, and we casually kept in touch via Facebook after that. But these two crazy kids brought our families down to Mott at the very same time. So at the same time Ami was going through her many many treatments, Colten was in and out of the hospital for his back surgery and shunts. There were other times we brought each other coffee or food, or sat and had conversations about our children. Hospitals are a hard place to be. Knowing someone from your “real” world, while in the hospital, is incredibly relieving. You feel like they kind of get it! And today, they happened to be at Mott for Ami’s 100-day followup MRI. I’m still waiting for Jason to update the blog tonight – and sending tons of positive thoughts their way…

Finally onto the DXA scan. This is the scan that measures bone density. Colten’s participation in the University of Michigan’s Myelomeningocele Treadmill Study is a year long. This scan is done at the beginning, middle and end of his time frame. We’re halfway through! This test is critical to the study, and thankfully, such a low radiation that people in the room don’t need to even wear protective wear. It’s no more radiation than being outside all day (so they say…). The hard part about this is that once again, he has to be perfectly still, so the study staff want him asleep. I had woken Colten up from his nap when I met up with Jason and Shelley, but was not sure if we would get him to sleep so soon after that. Luckily, he cooperated and the exam went off without issue this time. I don’t have much to say about this exam except that I got a little more than I bargained for with the results. See, there aren’t many children that have DXA scans. So there’s no comparative data. Think child height and weight charts – a child falls into the 40th percentile here, the 60th there, etc… That’s because enough population data exists to even make that statistic. Not so with DXA scans. However, the study needs this data to compare the bone density changes over time. They will measure the children in the study (all with Spina Bifida Myelomeningocele) around 1 month, 7 months, and 13 months to see how density increases (that’s what they are hoping for in this study). To provide true power to those numbers, they need to compare it with the data from babies with Myelomeningocele that are NOT in the study, and with typically developing children. Mott still needs help getting children scanned, so if you can help them out, check out their website: http://www.med.umich.edu/engage/index.html . I think it involves children from 1 month to 18 months. Back to what I was saying – these test results mean so little to me because there’s no baseline or comparative data. However, today, I was able take a look at something that relates to the CT scan from the morning!

When Colten fell asleep on the bed/table, he did what he always does – turns his head to the left, puts his fingers in his mouth, and drifts off to sleep. This left-lying position is possibly contributing to his head shape issues. Anyhow, this resulted in a pretty good profile scan of his skull, which shows the shape of his head so much more clearly than the pictures we take of him “live”. Obviously we will get a clearer picture from the CT scan, but those results we have to wait on. This was printed and given to me as I left Mott (labeled, of course, “non-diagnostic”, but who cares!). It was nice and frightening all at once to see the outline of Colten’s profile against images from the internet of scaphocephalic skulls and typical skulls. To me, this reaffirms that we were right on with our concerns and pushing for a CT scan to be done (the nurses were hesitant about there being any issue at all at first), even if they come back and say it’s not anything to worry about, the shape itself closely follows the shape for scaphocephaly. While I hope Mott calls and says “all is fine”, we are thinking that will NOT be the case. Here’s our non-medical, web-based, personal comparison findings… Make sure to read the caption embedded on the image grid to understand exactly what you are looking at. The most obvious comparison supporting our concerns is the upper right image we found, compared to today’s scan image.

Comparison of various images found online, noting scaphocephaly occurrances and a typical skull. Includes a 1 month and 8 month scan of Colten.

I put a call in on my way home from Mott today to schedule the CT followup. We are hoping this can be done via phone, at least to start. Hopefully we’ll get an appointment scheduled quickly so we can do what needs to be done to help Colten’s head and brain grow as needed.

I’ll close this out by showing off Colten’s scar on his back. He is fortunate that his scar is small and straight – many of the kids have very jagged scars due to trying to piece skin together. Colten had so much skin on his back because his sac was so large, it closed up nicely. It goes from a little thicker on top to a thin pink line that goes right down into, well, you know.

It Was an “I Dislike Spina Bifida” Day

May 22, 2013 by Kate

I hesitate to say “hate” because I imagine there are days in our future much more frustrating than yesterday. So I’ll save that for a special occasion. But yesterday, we had a slight crash from the previous day’s mini-success and then had more fall out from our physical therapy appointment. I remember what someone said to me after Colten was born. The gist of it was this:

It will take a while for this to sink in. You know, parents with children that have Down Syndrome seem to grasp the concept of having a child with special needs faster than parents of children with Spina Bifida. I think it’s because it literally stares them in the face every day and there is no escaping it. With Spina Bifida, once you move past the initial surgeries, there’s this period of time, for some of the kids, that they have a pretty normal baby period. Then things start to take shape around a year and all of a sudden, reality sets in.

As I mentioned before, we’re starting to see bowel issues with Colten. Then on Sunday night, we added flax oil to his bottle and it produced amazing results Monday afternoon (I’ll let your imagination fill in the blanks here – or not!). We were ecstatic! Between the flax oil, prune juice ice cubes, and some other assistance from below (to put it nicely), Monday was uplifting in this area. We have been really struggling to keep things moving for Colten and to finally get some relief – for him especially, was incredible! So of course, we gave him more flax oil first thing Tuesday morning in his bottle and waited, anticipating a repeat performance. It didn’t happen. That was discouraging. We were so confident that the flax oil was the cause of the new results – it was the only thing we had changed. And to see it not have any impact at all the next day felt like our balloon got popped. And another bottle with flax oil today produced no extra outcome.

There aren’t any pictures to reflect the previous paragraph, but I think you’ll appreciate this one:

Then Colten had his bi-weekly physical therapy appointment from EarlyOn Tuesday afternoon. He had a great appointment and April was impressed with the strength he is showing in his back, and his smarty-pants way of getting toys to himself (SEE VIDEO HERE). He still isn’t showing a strong “protective extension”, which is when a sitting child tips to the side and puts his arm out to help protect from crashing into the floor. He rolls over when he really wants or needs to, still struggling a little to get his arm out from under him and untangle his legs. He pushes up very well when on his belly and tolerates being there just fine. He sits up straight and tall and reaches for toys, and can even stay seated for a while when one leg is tucked in (this reduces his foundation and is a more unstable position, but will eventually allow him to sit “criss-cross-applesauce” – for the older generations, this is the more appropriate term used now for what you remember as “Indian style”). All was great with his PT appointment so far. Then, after some support in a crawling position that didn’t amount to much movement, she worked on getting him into a weight-bearing position – standing. That didn’t go so well. Most children will push through their legs from a few months old, when their feet touch a hard surface. Then around 6-9 months, they start to stand while being slightly supported or while holding onto something. Colten’s muscle development in his legs, or lack thereof, and his lack of sensation on his feet, make this task difficult. His right foot folds under him – I fear that if he does try to bear weight through that leg, his ankle will snap if he’s not flat on his foot. Even though he does “treadmill walking” on a regular basis, he’s not really walking – he sometimes lifts a leg and puts it in front of him (even more rarely taking weight on that leg), then the legs just drag back behind him.

This is how the right foot just folds under him – he has no control over it:

His leg getting caught up under him after rolling himself onto his belly:

So the PT mentions the words “standing parapodium” and “orthotics”. For some reason I felt like laughing when she said it. I still don’t know why! But it just sounds like a lot of contraptions for such a little man. So I jotted in my notes for his next clinic appointment at Mott to ask the Physical Medicine & Rehab specialist, Dr. Greene, about what steps we need to be looking at next. After the PT left, I re-read the session notes she left and had myself a little cry. This poor little boy is going to have to work so hard at these things we take for granted. I wish I could make it easier. I wish I could make it go away. I felt so bad that not only could my son not do what his body needed to do (back to the nether regions), he was going to have to struggle to get it to do what he wanted it to do (move). And I felt helpless, defeated, angry that my body caused this in him, sad, and just not ready to deal with all this equipment stuff. When Richard got home that evening, I shared the frustrations with him and we both had a little pity party.

But it’s hard to have a pity party. Some days you want to scream, cry, kick and wake up from a bad dream. Other days you feel like it’s just how it is and this is the new normal and this is ok. But even when we have a little pity party, I feel guilty. There are so many – SO many children out there with medical, emotional, physical or cognitive issues that far exceed what Colten will hopefully ever deal with. How can I feel sorry for us, or for Colten? Really, when looking at the many complications that some kids have, we are lucky. We are lucky he was born full-term. Lucky he’s so happy. Lucky he’s otherwise healthy. Lucky we have family and friends that are interested in learning about his needs and how to help support him. Lucky we have two other boys that adore their little brother. So we push the pity party aside and try to look on the bright side (go ahead, sing the song now). But you know, sometimes we just really dislike Spina Bifida. Good thing we LOVE this kid…

The Milestones are Greater

May 14, 2013 by Kate

Most parents, as they watch their babies develop the first couple years of life, get great joy out of seeing their child reach all the milestones – reaching, rolling, sitting, crawling, standing, walking. These happen at a fairly normal pace and we anticipate them eagerly! I know I watched with pride as our first son, Parker, rolled around 5 months, sat up around 6 months, crawled and pulled to standing by 8 months, and walked by 11 months. We then watched incredulously as Max, our second son, tried to keep up with his big brother by accelerating the pace: rolled by 4 months, sat up by 6 months, scooted around and pulled to standing by 7 months, and took his first steps before 10 months of age.

Now, we see different milestones. Sure, we are still working towards the big ones, but because those milestones are more difficult to come by, because the challenge is that much greater (as is the pride!), we are far more observant of the little intricacies that need to happen to get to the next step. Today while on the floor with Colten (almost 7.5 months), I had him propped up in a seated position. He has improved his stability so much over the past couple weeks and works so hard at keeping himself upright. He did his best when he had a smaller toy in his hands that he could put in his mouth; it was almost like he was so focused on that object he forgot he was sitting! Our challenge is to get him to be a more sturdy base for himself – to figure out how to use both his arms and legs to keep his torso upright. Previously, he would start to lean and just topple. He never lasted long sitting and seemed to have no use of his legs to help counter-balance a tip. Now he’s getting there. We see the little movements in his legs as his body goes to one side. And today, he even used one hand to put down on the ground for support as the other reached up for a toy!

It sounds so simple, so easy, so mundane. These are the little steps that I never saw with the other boys – we didn’t need to see them. It’s so fascinating to see how the milestones unfold at this pace. Sure, it would be awesome if Colten didn’t have to work so hard at these things. If they just came about without much intervention – I certainly don’t remember working with the other boys on these skills! But we have on average two appointments each week with therapists that remind us he is working very hard at the little things he needs to master. And eventually, those little things will build up into the great milestones. So we have a greater number of mini-milestones we work on that lead to greater rewards at the major milestones. So props to Colten for using his hand today to support himself while sitting and playing!

We are learning through all of this that it’s not about how quickly a child accomplishes any milestone. It’s about how they master the skill and all the details along the way. It’s about feeling proud of each success and allowing Colten to make his own milestone development timeline. It’s about making sure Colten succeeds in using his body and mind to the best of his ability. Want me to be even more cliche? It’s about the journey, not the destination… And we’ll get there when we get there.

And for the curious minds, Colten’s development is not too far off yet. He rolled a couple times by 7 months and continues to work hard each time he rolls (rare, once or twice a day). He prop sits and needs constant supervision in that position still. The biggest gap for him is weight-baring. A typically-developing child, when held under their arms and placed on a hard surfact, will push through his/her legs to “stand up”. Our older sons did this by 2-3 months of age and by 7 months were standing up while holding onto a couch or stool. Colten rarely bares weight through his legs at all. We have to stand him up and lean him into his heels a bit to get his legs to lock up and bare weight. Even then he will only engage for a few seconds then he just lets his legs collapse down. So we realize that will delay some of the big motor skills like crawling, standing and walking. But we’ll get there. When he is good and ready!

Rolling, Rolling, Rolling…

May 4, 2013 by Kate

A couple weeks ago, Richard and I went out to see the local high school play and his mom came by to hang out with the boys (thank you!). That little stinker Colten decided that he would roll over from back to belly for the first time while we were gone! Then over a week went by without another roll. Then he rolled for Richard. Then a few more days went by and finally yesterday, he rolled while we were playing! The look on his face after he did it was something along the lines of “See Momma? And you didn’t believe Grandma and Daddy… I can TOTALLY roll over all by myself!”

Other than that, at seven months old… he still sleeps through the night most nights, is happy as a clam most of the time, is getting introduced to various foods now, and just enjoys playing on the floor – especially when his brothers are around. He had a tooth break through, then it retreated back in, so he’s still actually toothless. No other medical issues recently – which has been nice, just some concerns about his bowels which I’m guessing he will one day not want to look back and realize the whole world (okay, at least those reading this blog) knows about them, so we’ll try to be a little discreet in that department.

[Brothers. Always in his face!]

[Feeding time]

He has been scheduled for a CT scan at the end of May to check and see if his head shape needs to be of concern. They thankfully scheduled it for the same day as some urology tests. Last time we went in for those tests they could not get what they needed because he was so fussy. We are hoping that he’ll be more cooperative coming out of sedation from the CT. I am very appreciative that Mott worked to make this happen per our request!

[It was a little chilly out this morning, but the sun was shining so out we went!]

Colten’s PT is still every other week, and his Anat Baniel Method therapy (“neurological” therapy) is every week. He seems to enjoy working with both therapists! The U of M treadmill study people see him every other week as well. He continues to not give one lick about taking steps on the treadmill, however, he did apparently bare some weight on his legs at the last session.

[Protecting his eating zone…]

We are excited to see summer finally arrive and have enjoyed many hours outside already. Boys do not do well cooped up in a house for such a long winter! We have a few things coming up this summer that are in our lives because of Colten, so I want to share…

May 13, 6PM, CASE Cares Miracle Field (North Lansing)
It’s OPENING DAY! The Miracle Field is a specially designed field used by teams made up of children with varying disabilities. The field allows for easy rolling and maneuvering for these kids – each paired with a buddy to help them bat, run and field. There are leagues all around Michigan so if you’re interested in learning more, volunteering or donating, you can certainly search around and find one. We are excited to take our family to Opening Day. We hope that this will be a long-time tradition for us – and that maybe Colten will want to play one day! How awesome would it be to see him out there, maybe one of his brother’s could even be his buddy?!
The Mid-Michigan League’s website and Opening Day information can be found HERE.

May 23, 6-8PM, Potter Park Zoo
For years there has been a sign near the playground right outside the zoo that highlighted a new accessible, barrier-free playground coming soon. Years the sign has been there. I figured the project was long-forgotten, then just the other day was informed that it really is coming to fruition! While I loved the idea of a barrier-free play structure even before Spina Bifida was part of our life, it now has even more urgency and relevance to our lives. So we very excited to see this happen, especially because we frequent the zoo a LOT! So, if you are interested in attending the fundraiser, here is the information. We would love to see others there!
You can view the flyer/details HERE. Pre-purchasing tickets may be a smart idea!

June 22, 9AM, Sterling Park, Monroe
Every cause has a walk, right?! So does Spina Bifida! Except it’s actually a Walk ‘n Roll 🙂 This year, the event is on June 22, at Sterling Park in Monroe. We are attending as part of a team from mid-Michigan. If you are interested in attending for fun or for fundraising, here is the main event website. The team we are participating with is the Mid Michigan Rollers.

That’s all for now! Off to enjoy the rest of this beautiful Saturday…

[Happy 7-months Colten!]

Oooo, That Stung a Bit

April 20, 2013 by Kate

Today was the first day. The first time. The first of many, many times sure to be in our future. Today I was at an event in Lansing (The Great Cloth Diaper Change – a worldwide event in the Guinness Book of World Records!) and the mom/baby pairs were lined up in somewhat of an age order. The two little girls next to me were sitting up nice and pretty on the floor and looked close in age to Colten. At some point I inquired to the moms next to me how old they were. I should not have done that. See, we have been coming along nicely and we are feeling good about how Colten is developing at his pace with his own strengths. We know he’s a little behind the typically-developing curve and that’s ok. Because that kid is super happy and smiley and loves to laugh!

So anyhow, I should not have done that. But I did, and they shared. Their little girls were 5 1/2 months and 6 months. Colten is just over 6 1/2 months old. And the reality of it hit me square in the face that he will not develop along with his peers in regards to motor skills. And even though I knew that already, and even though I feel I’m okay with that, it was just a vivid, in-my-face comparison that I could not avoid.

This is the first time we’ve been around someone of the same age as Colten since he’s been born, so that is partially why this was so evident. Actually, I take that back – there was one other time my girlfriend was nannying for a young boy very close in age to Colten, but that was around three months of age or so and at that point, really, they aren’t doing much! I know that it will get harder as the next milestones come and go, and I know Colten will have his own strengths and he will accomplish many milestones at his own pace. It just stung a bit to have it hit home.

Update on the Oddly-Shaped Head

April 15, 2013 by Kate

Sub-title: Cranio Doc Calls Mom NOT Neurotic!

Last week Friday, we took Colten down to Mott for an appointment we had requested to have his head shape looked at more closely. The appointment was with the pediatric neurosurgery department, since they already have had dealings with his skull/head (shunted hydrocephalus, mild Arnold Chiari II malformation – both common diagnoses that come with Spina Bifida Myelomeningocele). We started with Dr. Maher’s nurse, Bella, and she called in one of the NP’s from the cranio clinic. After looking, feeling and chatting, the cranio nurse had an aide or nurse come in and take some pictures of Colten’s head from various angles. She would then take these to Dr. Buchman for review and call me with his feedback.

Leaving there on Friday, both Bella and the cranio NP had us feeling like the head shape was just different, not necessarily a big deal though. And while I do hope that ends up being the end result, Dr. Buchman looked at the pictures and is recommending Colten get a CT scan (or CAT scan). He said his head shape is definitely abnormal, “especially for not being a preemie”. I think, based on brief readings online, that some preemies tend to get misshapen heads if they’re required to be in their hospital beds for months at a time, laying in certain positions.

So now we wait for radiology to call us and schedule his CT scan. At that point, we’ll see if there’s an issue – or not, and discuss options from there if needed. While it is reassuring that we can get the head shape looked at more closely, and that Momma wasn’t too neurotic, CT scans deliver a huge dose of radiation compared to standard x-rays, and Colten will have to be sedated for the scan. Neither of these are desirable, yet if there is something growing in a way that brain development may be impeded, we certainly need to get it evaluated.

More to come as things develop…

Besides that, Colten is working so hard at getting that body of his to roll over, and he’s enjoying tasting some mashed up bananas these days. He’s getting more comfortable having little bits of play time on his belly and has become even more drool-soaked as he has picked up blowing bubbles. Last night at dinner he entertained his brothers so much with this antic that Parker’s laughter then made Colten laugh – and the rest of us! I cannot imagine what meals will be like with three little boys as they all get older, but if this is any indication, I’m waging bets on messy, loud, and hilarious… with tons of food!

A little eager for that banana?!

Physical Therapy Workout

April 9, 2013 by Kate

There will be a more thorough update about physical therapy and EarlyOn in a few weeks, after the official 6-month review. Today’s appointment though was a good one and I got some pictures to share. Colten has not been super cooperative in past appointments and really, how much are you going to do with a child under six months?! But now we’re seeing some action, work and progress!

Colten is working on getting a few things down that most six month olds can do on their own:

sitting up with little support (he needs a lot)
rolling from back to stomach (he can only do stomach to back)

He has a hard time sitting up on his own due to the weakened glute (butt) and hamstring muscles. When you sit, lean forward – your back engages. Colten can do this movement and has a very strong back. Now lean backwards. Your butt, hips, hamstrings and abs engage. He has to count mostly on his abs during this movement and they just aren’t strong enough to support him fully.

As for rolling, we’re slowly getting there. He will rock side to back to side to back, and when given assistance, can certainly get his body over onto his stomach. He just enjoys being on his back far more and tries to roll himself right back over!

So the PT, April, worked him out today and he was very cooperative, happy and engaged.

Holding the right super-flexible leg back to encourage him to reach more for the left foot.

Assisting him rolling back to belly.

Sitting with support.

While activating his abs, April had Colten reach for a toy on each side of him and in front.

Working on reaching forward, while stretching the hip flexors out

A Recap of the First Six Months

April 3, 2013 by Kate

About six and a half months ago from today, we were sitting at a ColdStone, attempting to squash our anxiety with ice cream. We had just left a brief appointment at the OB’s office, where they took a quick ultrasound to just check the baby’s breech position. They told us there was “a mass in the lower uterine segment” and at the time, it never crossed our minds that the mass was on the baby. We thought it was on me – maybe a second baby that was lost early on, or a weird cyst in me. Not once, in the brief time between the base ultrasound and the diagnostic ultrasound, NOT ONCE, did it cross our minds that there was ANYTHING wrong with our baby. We were simply trying to process the possibility of having to do a hospital birth, or, god-forbid, a c-section. That might sound odd to you, but for us, we had our first two sons naturally, peacefully, and medication-free at Greenhouse Birth Center, under the care of midwives. So in our head, the “worst case scenario” for us was a c-section.

The next day, September 18, 2012, at almost 36 weeks along in our third pregnancy, our world changed [here is our very first post]. I remember laying on the ultrasound table during the exam – again, NEVER comprehending that something was wrong with the baby. The ultrasound tech said little, and while we were nervous and anxious, nothing could have prepared us for what the perinatal specialist said when she came in. “We see that the mass is on the baby, not on you, and we think it’s Spina Bifida.” At that point, most of what else she said was a blur as I laid on the table sobbing while she continued the ultrasound. I’m not sure what I really knew or understood about Spina Bifida prior to that day – I know it was very little, but something in my gut told me this wasn’t good. She threw out things like hydrocephalus, club feet, surgery, cyst on his back, nerves in the cyst, lemon-shaped head, chromosome abnormalities and other things that made no sense to us. When we left, armed with just a single piece of paper that explained Spina Bifida to us, we drove quietly away until Richard broke the silence with, “I’m not sure any amount of ice cream will help this…” It was a needed, nervous laughter, then more tears.

Yes, there are still days we shed tears for the uncertainty that lies in front of this beautiful boy, but we are far less scared and far more knowledgable. We have met an incredible community of families and doctors. We have been helped along the way by so many people out there – family, friends and complete strangers. We realize we have a new normal and we struggle with settling into that at times. While I cannot imagine what the families that have a special needs child for their first baby go through – I have to imagine it is harder in so many ways because you’re learning everything for the first time – the baby stuff and the extra stuff. There is one small part of it that might be easier for first-time parents – they don’t have siblings around all day doing things that you look at and say, “I don’t think he’ll ever do that…” Not that we have low expectations of Colten, not at all – just when I see his brothers jump from the top of our toy bins to the floor, I have to be realistic. However, we are incredibly thankful that Colten does have siblings because as we watch Max (2) try to keep up with Parker (4), we know that Colten will be pushed by them to do whatever crazy thing they are doing that day. And that will help him move. And moving will keep him strong!

Super strong…

So exactly six months ago today, we welcomed our third, precious little boy into our family! We are so in love with this precious boy!

Richard gave me a beautiful canvas print of a picture taken from Colten’s birthday – the moment they handed him to me, when I didn’t think I would hold him at all, and ended up holding him for over three hours!

Attached to the back was a heartfelt poem “from” Colten…

Oddly-Shaped Head vs. Neurotic Mom

March 27, 2013 by Kate

It’s the greatest superhero fight ever! Not really but the title made me think of superheros. And it put a hilarious image in my head! Anyhow, in our last post from Colten’s Myelo Clinic check, we mentioned that there was slight concern about his head shape. Between that and the fact that his head circumference started going back up, this Momma is on high alert. Measuring his head daily and trying to find out more about this new word they used: craniosynostosis. And the internet is either giving me clear proof that I am right to be concerned, or it’s fueling my neurotic behavior unnecessarily.

One type of craniosynostosis is scaphocephaly. This is when the early fusing takes place in the saggital suture – the seam that runs from front to back of the top of the skull. When this happens, it forces the brain/head to push out the front and back since it cannot expand evenly throughout the skull. Based on a measurement chart I found online, Colten’s Cranial Index is about 68% (remember, this is Richard and I measuring with his well-designed but not official head calipers… we made a device out of kabob skewers. Now I’m wishing we had a picture. Maybe we’ll re-enact it again tomorrow. This percentage is considered moderate scaphocephaly. Mild is 70-75% and normal is 75-80%.

I put a call into Mott’s pediatric neurology unit today because of these findings. It was mentioned casually at the clinic appointment last week but after looking more into it, I’m kind of surprised they didn’t measure him right then and there. Just as a precaution. So hopefully I get a call back tomorrow in regards to who we need to talk to more about this. They did mention at the appointment that they are not a helmet-first department. Frankly, I would prefer to avoid another surgery already and am interested to learn the rationale behind a surgery-first approach. If that’s even needed. Right now I just want someone to take an official measurement and say either “here’s the next step” or “stop being neurotic”. Actually, I’m not sure I need to use neurotic at all. My mom reminded me that when she saw him a couple weeks ago, she had even remarked about his head shape seeming more off than before. I had not taken much to the comment because I just assume it’s going to be a funny shape due to the Chiari Malformation. However, that is not – or should not, be the case. I just kind of assumed that if the brain was a little off-kilter in positioning, it would cause the skull to form differently. In a Chiari Malformation, however, the cerebellum is pulled downward. So if anything, the skull would be flatter. But I couldn’t locate anything regarding skull shape and Chiari in my brief browsing. So combine that with the other revelations at his appointment and you have… not-so-neurotic mom?

In the meantime, here is my visual evidence…

This is a picture from today of Colten’s head, side view. The lighting makes it slightly hard to see but he has a flat part at the top of the back and then it really rounds out away from his neck – a very oblong shape, not a round shape, as is typical. His forehead is starting to protrude outward again, as it did before his shunt was placed, as well.

These are a couple of pictures (from this website) of children before/after treatment for scaphocephaly. Colten looks very much like the 2nd picture, in my opinion.

As I said in last week’s post, there’s a lot of crazy images from the surgery that some of these kids need. That surgical technique has been replaced by a much less invasive procedure in many hospitals. And sometimes helmets can resolve the issue. So we will wait to see what happens. In a weird way, I wanted to post this so I can look back and say, “Aha! I knew I was right!” However, I would MUCH rather be wrong!

We will keep you posted…

Feet, Treadmill, New Toy, Rolling and Resources

March 17, 2013 by Kate

Lots of randomness in this post. Bear with us!

I was perusing some spina bifida related videos on YouTube today and Children’s Hospital of Philidelphia has a wonderful 12-part series about Spina Bifida, from diagnosis to surgery and beyond. This specific one is one of the best descriptive videos about what Spina Bifida is and if you have a few minutes, we would love to have you watch it! It does a great job of highlighting what SB is and some of the complications that go with it.
Spina Bifida Facts Video – Part 2 of 12, CHOP

Update on Colten finding his feet… He still seems a bit disinterested. We play with them a lot, he wears crazy socks with rattles, we put them in his mouth. Every once in a while he acts like he is intentionally grabbing at his leg or foot and he engages for a second or two then goes about his business. Most of Colten’s interests still lie in people’s faces instead of toys. We are always trying to encourage more interaction with various toys and books – but it’s hard to resist a kid who just wants took at you and grab at your face! How can you resist these eyes?!

A huge thank you to a family friend, Mindy, for hooking us up with her activity center. Because we are being discouraged from using bouncy activity centers with Colten (could have a negative impact on the treadmill stepping, although at this point, that can’t get much worse!), I went looking for one that would work better for him. I found one that has the activity station in the center and the child sits in a sidecar-like seat that moves around the outside of the station. I asked the U of M study team if this would be a good fit and they were excited about it. Because kids with myelomeningocele tend to have weak abductors, and the seat requires a side-step motion to move, if Colten can do this motion it will be a great workout for him. Actually, if the child can pivot themselves in the seat, forward and backward walking can be done too. Anyhow, Mindy and her family graciously passed on their activity station to us so Colten can use it! He loves being upright already in it, but cannot touch the ground so he’s not in it very long as this position isn’t ideal for hip/spine growth – he needs to be more supported instead of dangling from his crotch. However, Max has quickly realized he can push Colten around and around and around and around. I think they both had fun!

The crew from the University of Michigan Developmental Neuromotor Control Laboratory was here on Friday. This is the group running the treadmill study Colten is a part of. They come by every two weeks to measure and do practice sessions with Colten. Richard handles most of the treadmill stuff now. He hasn’t been having much luck with Colten taking many steps on the treadmill, and that was very much confirmed on Friday. He didn’t take any alternating steps, only some single-steps. The point of the study, however, is not to get Colten to walk, but to step in order to have impact/compression through his legs. This will help build up stronger bones for him which will hopefully result in less fractures in his future. However, if he’s not stepping…then I’m not sure how much benefit we will see. So Richard will continue to do treadmill time each day and hopefully he’ll get past this non-stepping slump soon.

One of the things that both the treadmill folks and the PT would like Colten to have more of is tummy time. This has been a hard thing for us to do much of for a couple reasons. One is that there seems to be some mixed information on tummy time. I saw this video a few years ago, after Parker was already rolling around. I recall thinking I would be interested in trying this route with our next child – allowing the child to naturally get onto their belly instead of pushing tummy time. Sure enough, when Max came along we didn’t push tummy time, but he progressed so fast that he rolled both back-to-belly and belly-to-back by four months! So we have not pushed it with Colten. We prefer to let him learn how to do it on his own. This is actually in line with the Anat Baniel Method therapy we take him to. Don’t force a development schedule on the child – let the child learn and develop in his/her own time.

As I recalled the video and looked it up, (this is what started my YouTube-ing today), I discovered that the philosophy behind this video is based on the Feldenkrais method. That meant nothing to me at first, but as I watched the video again, there seemed to be so many correlations between what this research was saying and what the Anat Baniel Method teaches. So I dug a bit. Sure enough, Anat Baniel studied under and was trained personally by Dr. Moshe Feldenkrais! So maybe it’s a sign that this therapy is what we’re suppose to be doing. The philosophy feels right for us, Colten enjoys it, and it’s not so much a therapy as an educational model for his body and brain.

Right now Colten is 5.5 months. He should be rolling side-to-side more – he was doing it quite a bit before, but that seems to be because he disliked even being on his back (can you blame him?! I wouldn’t want to lay on a surgical site!). Now that he is comfy playing on his back, he doesn’t apparently feel the need to roll side to side anymore, except when he’s tired and in bed. Then he rolls right over and cozies up on his left side. He seems to shy away from rolling onto the shunt side much. Here’s Colten enjoying back time – his legs up in the air always crack me up! That’s his “relaxed” pose!

In my YouTube browsing earlier, I also came across a video about a young girl with Spina Bifida. After watching a number of videos and feeling a little depressed about some things, this video was wonderful to watch. We hope we can help Colten develop a sense of confidence and positive attitude like this young lady’s! Watch the video…