Yesterday was just not a good day. Not a horrible day, just a disheartening day. A little of that was Spina Bifida, and a little of that was typical kid stuff on top of Spina Bifida. I would like to say that when we look at Colten, we don’t “see” Spina Bifida, but that would be a load of crap. It would be like looking at him and not knowing that he has two eyes. And while it might not be obvious to others, we see him in everyday situations where it rears its ugly head. When he tries to stand up and his feet are upside down… Spina Bifida. When he sits, twists, and turns, and his feet get stuck in very painful looking positions… Spina Bifida. When we change a diaper and the poor boy’s bottom is red and bleeding from the frequent stooling… Spina Bifida. When you hesitate to wipe his bottom for fear of hurting him, then wipe him and get no reaction because he has no feeling down there… Spina Bifida. We don’t “define” him by it and it does not define him. It simply is a part of who he is. I am explaining this because I hope to convey how frustrating simple childhood illnesses can be – we have to play a constant guessing game as to whether an illness or some off days is caused by the typical things, or the Spina Bifida stuff (shunt failure? constipation? tethered cord? Chiari?).
Yesterday, truly unrelated to SB, Colten was on day 3 of a gunky eye that would not get better so off to the pediatrician we went. Before I walk you through that door, let me back up about a week and a half ago… Colten had just seemed not himself recently. He was extra fussy, extra clingy, extra crying. I couldn’t put my finger on it. [NOTE: If you are eating or don’t want to read about poo, you may want to stop or just skip down to the next paragraph.] But I noticed he didn’t seem to be having quite as many/often/large bowel movements and when he did, they were super runny. In children with SB, because they often do not have enough innervation in the “bathroom areas” of their body, there can be a multitude of issues related to bowels and bladder. We’ve been fortunate so far to just need to monitor his kidneys due to reflux and have managed his bowels with diet. But this looked like true constipation to me. We learned at an SB educational event that when bowels are truly impacted, the impacted material gets stuck and then runny stuff seeps around and comes out. So the key is removing that impacted stuff. So I assumed he was constipated and the doctor recommended Miralax. [Sidenote: Miralax is not FDA approved for kids and is only approved for temporary use. However, in the SB world, it appears that pretty much every doctor recommends giving this to kids. Pretty much for the rest of their lives or until another bowel management program is in place. I’m not sold on that being the answer for us yet.] With hesitation and desperation, we gave Miralax to Colten three nights in a row in his bottle. If it was possible, he pooped LESS. Then our family (and friends!) got hit with that nasty stomach bug going around and all of a sudden Colten seemed to, well, empty out. Whew. But he still wasn’t himself, and now had a cold and a gunky eye. So back to the pediatrician yesterday…
Picture from the party that seemed to start the spread of the stomach virus. Colten taking a swing at the pinata!
As she checks the other orifices around his head, she declares he also has two very bad ear infections. Well that will do it. That is very likely why he hasn’t been himself. It’s pretty much the reason he barely slept the other night. So at least we have an answer. Irritating that he JUST had ear infections about 2 months ago as well. I feel bad for the kid! So now he gets some more oral medication (which he loves) and drops in his eyes every four hours (which he loathes).
That was kind of the icing on my cake for the day since earlier yesterday morning (I know, I need to write in better chronological order!), Colten had his second PT appointment with our new therapist. Over the past month or so, he has been very fussy at his clinical therapy appointments. Due to ear infections? Maybe, but I had assumed it was due to some other reason – unhappy being there, unhappy with therapist, sick of PT, etc… So not knowing about the ear infections yet, we had another struggle day at PT. He would be engaged for a few minutes then want to cling on me. Back and forth. So it was hard to tell what the issue was because he would go back and forth between being playful, happy and engaged, to being cranky, sad and fussy. Then the PT brought out a gait trainer. I am not exaggerating when I say that the SECOND Colten saw this roll into the room, he BURST into tears. Not entirely sure why, although I’m guessing it reminded him of the mobile stander that he also did not like very much. Jessica quickly removed it from his sight and we went on to other things! Although I don’t blame him. This thing is quite the contraption:
We did end up getting him, kicking and screaming, secured in the gait trainer. For about 1 minute. Then I had to pull him out. He just wasn’t into it. But it was sad for me. When he has full use of his arms/upper body, he can pull himself up to stand very well – straight, tall, and if he has his AFOs on, very stable. Yes, he kind of crumbles under himself when he unlocks his knees, but it’s very impressive to watch him stand up around the house holding onto different things. But something about the gait trainer and his apparent aversion to anything that can help hold him up into standing/walking, it made me sad. It made me think he’s so much further from taking those first steps than I thought he was.
Richard and I talked about it extensively last night and we agreed we would ask the therapists to take a break from these contraptions for a few months. There are so many other things we prefer he work on over standing/walking, such as stairs, stronger standing, tall-knees, etc… I don’t want him to hate therapy but if they keep putting him in these things, he will hate it. I imagine by the time his mobile stander gets to us and is in the comfort of our house, then maybe we’ll be ready to try it again.
Today as I was writing this and still feeling a little sad about the whole thing, I remembered a phrase from another family’s journey that we have been trying to remember during our own adventures, and really, it applies to every child, at every age, of every ability:
Colten will do what Colten will do when Colten is ready to do it.*
So today I had to just remind myself that Colten is not sad about what he can do or what he cannot do. He is upset with us for forcing him into things he is not ready to do though. Colten isn’t frustrated by not taking steps. He doesn’t care. That kid crawls faster than some kids walk! And you should see him scale a flight of stairs using his hulk-like upper body. And whip a ball at his brother, and climb over anything and everything in his way, and you should really see how much food he can put in his mouth at once. (After all, what else do 16-month old kids do?!) He is a happy, goofy, determined little boy and is quite content moving in his own ways. So we need to step back and let Colten tell us when Colten is ready for the next “step”.
(*I borrowed this phrase (and changed the name of course), from Rachel Coleman and family. If you are a fan, or not, of the series Signing Time / Baby Signing Time, you may be interested to know that the woman in it, Rachel, is mom to Leah, the young girl in the show who is deaf. Leah has a younger sister that happens to have both Spina Bifida and Cerebral Palsy. Rachel’s extraordinary outlook is inspiring… Her daughter’s don’t know any different than who they are and what they have. They are not sad about it – it is just who they are. And she loves them for exactly who they are. You can read more on the family here: www.rachelcoleman.com )
The Adventures of Colten Robert 
Your son is adorable. I remember going to therapy when I was very young and I can remember how much I hated standing in those dang standers. I would scream and cry, my mother didn’t know why because I wasn’t old enough to tell her. When I finally got old enough 4-5 (Although I was talking about 2 I didn’t really know how to explain myself) I told her 1. It hurts 2. I’m afraid of falling 3. I don’t want to. — 1. She really couldn’t really do anything about. The stander hurt my back, hips and knees. 2. They tried and tried, for about 2 years to get me over my fear of falling. It wasn’t happening. 3. This was her biggest influence in the decision not to make me use one. Not your normal “I don’t want toooooo!” whine, more like your “Please don’t make me!” beg. It was the right decision for me. My wheelchair gives me so much freedom. I’m in no way saying this will be your son. I truly hope the assisted-standing will help him. I’m glad to hear you are listening to your son, so many parents don’t. As you said, and I agree, he’ll let you know when he’s ready.
arkansasrose, I so appreciate your insight as an adult now looking back. I have been wanting to start talking with more adults with SB to ask them this very question – do you wish you would’ve been pushed harder? less? what are your regrets with how your therapies went, etc… You answered it for me and I thank you for that! It felt right, when we made the decision to lay off the equipment. I can tell by Colten standing around the house that it doesn’t hurt him to stand, but there is some fear or uneasiness in this equipment that he’s just not ready for, as you expressed from your own childhood. THANK YOU!
Kate,
What can I say or anyone say. I’m sad that you’re sad that Colten is frustrated and unhappy, that he has to battle ear infections, eye infections, bowel issues, and everything else on top of the limitations and challenges of spina bifada. You and Richard are remarkable in your love, care, resolve, and energy to help Colten have a good life even as you both attend to Max and Parker and their incredible energy. No doubt you would like to pass on being remarkable and to have an unremarkable life with children who pose no special needs or problems, but like so much in life a lot of what comes in our path is not what we would choose but what circumstances bring us. Some people try to fly from these situations while others are fighting every aspect of them and, of course, failing miserably. Those who like you and Richard choose to go with the flow and to squeeze out of every circumstance hope and humor and a sense that all is well are among those who make the right choice, hard as it is at times.
I don’t know if you get tired of hearing from us those words, “I really admire you,” but it is really the deep down truth. When I read one of these posts I realize how my own health challenges are minor, especially because mine come toward the close of my life whereas as Colten’s [and yours] come at the beginning. I wonder whether I would have been brave enough to face all that you and Richard confront daily. Anyway I remain in your corner rooting for all of you on every difficult day that Colten and you confront.
Love,
gordon
Uncle Gordon,
Your support, and that of everyone, is always appreciated! We know a lot of other families going through challenges, all difficult in their own unique ways, and we admire them for the things they do well – their resolve, their fight for their child, their ability to provide extremely unique living environments to accommodate their child’s need, their resolute marriage, and on and on and on. I think everyone has circumstances that challenge them in some way – some of more than others it feels at times. But I do think that, knowing you and the heart you have for others, that you would absolutely do everything in your power if you were in our shoes. But I know it feels like you couldn’t. It’s how I feel when I look at other people’s situations – I could never do “that”. But I think we all surprise ourselves, don’t we!?
Kate ………….. A woman once asked if I kept a journal (which I didn’t) but I was a great letter writer and wrote often to my mother. She could read between my lines of humor and I’d always get a nice letter in return………MANY of which I’ve saved. And I also had a great listener who happens to also be your paternal grandmother. So kiddo, keep on writing this journal! You’re educating many of us as we deep inside keep in prayer you, Richard and your three darling children. I’m so happy you’ve included me in Colten’s Adventure. xoxo