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.
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!
Dear Kate & Richard—
Amazing stuff. I’m sitting here thinking that everything you’ve been exposed to and all that is available is just one very small part of what modern medicine and wellness currently offers for one particular situation. You seem to have done such a terrific job of taking it all in, being your own sleuths in the spina bifada mystery, and intuiting what just doesn’t seem right. Your backgrounds definitely give you both a leg-up in dealing with all this. At the same time I am struck by how formidable it all is. So much to know, to notice, to do, to be attentive to, to help with, etc. You’re marvelous parents!
I continue to be so impressed and amazed at the time, love, parenting and opportunities you two seek out for Colten. I have learned so much and am so grateful for you taking time to share and inform and amaze all of us basically outsiders to spina bifada. It must be exhausting, heartbreaking and exhilarating all at the same time. Cheers to Kate, Richard, Parker and Max for being a wonderful family to Colten and cheers to Colten for working so hard and loving life so much! Maureen
Hi Kati, so nice to finally meet Colten and you sunday at the picnic. He is so cute with that big beautiful smile of his! Wow this is a terrific post today. I was laughing many time as i read the adventures. He is doing soooo well for his age. rolling to sitting alone, claping the braces and stander in sight! Wow this kid is working so hard and parents too. I hope the skull issue gets better with the treatments. You have your hands full. girl but, your doing a wonderful job for your son. Remember, time and lots of patience (which you already have) as he is still less that a year old. Things will get better as time go on. He will surprise you, i know. God Bless and you and the family enjoy the summertime!!
Hi Katie, I waited until I got home today to read your post on my laptop rather than on my iPhone ’cause its much more interesting (fun) when I can watch the videos on a computer. I don’t understand why I don’t have your phone number, can you email it to me? I was driving home this morning from the Battle Creek area and thought about giving you a jingle……………low and behold, your number was no where to be found. Loved the picture of Colten playing with the faucets while the doctor examined his head. Kudos to the doctor for putting the patient first!
Thanks for sharing Colten’s story. One day when he reads this, he’ll make you explain who wrote all the replies. Hugs to ALL OF YOU! .