Tuesday, June 21, 2011

Living, Part 2

June is Spina Bifida Awareness month in Canada.

In the US it is in October. Last October I participated in a blog link up where a whole bunch of people living with SB blogged about what life was like. I wrote about what life was like with Kingsley who was 8.5 months back then: Living There wasn't a lot that made Kingsley different from any other baby his age, other than a few moments of my day where he required a bit of attention. Eight months later, things are quite similar.


However, they haven't always been that way. Between October and now, that proverbial stereo had it's volume cranked to 10 for a good solid 4.5 months. Not only did we have to face the music, but it was the kind of music that gives you a headache and that is nearly impossible to dance to.  It was stressful, it was consuming, and it was really painful to see my baby boy have to go through the things that he went through. I guess that is what living with SB is really like though - the stream of months or years of just life, mixed with episodes of panic and anxiety and dread that slowly fade back to life. Right now we are just living and life is really good.

Kingsley is almost 17 months old and has five diagnoses on paper now: myelomeningocele spina bifida, chiari malformation II, hydrocephalus, neurogenic bowel and bladder, and something else which means his legs don't move much, but I forget how it's worded.  Last year, the shunt, medicine, cathing and therapy were the only small things in our life that reminded us about the SB. The shunt doesn't scare me anymore, I barely think about it. We are fortunate that Kingsley (*knockonwood*) has not had any trouble with Billy at all. ;) He does his job and doesn't cause us stress and that's just the way I like it. The medicine is equally mundane. I give him his meds on schedule (at diaper changes so I don't forget), they work, everybody is happy. Likewise, cathing is just still part of our routine four times a day that I barely think about. I still avoid doing it outside the house and usually I'm able to work it out so that it's done at home without causing us too much trouble. Jeff can do it, obviously, and Jeff's mom is able to do it now, which means that if she's babysitting I don't have to time my outings around it. My mom has also offered to learn whenever we need her to, but we just haven't had a need yet. I guess I don't get out that much ;)


Therapy wasn't too cumbersome for the first year and it's still not, however everything to do with therapy is bigger and more involved. He has AFO's that he wears on his lower legs and feet every day. I don't know why, but people tend to think they are sandals. Maybe because of the velcro strap? For whatever reason, they don't get a lot of attention. They protect his feet from bumps and squishes, as well as keep them in the correct position for standing. They don't bother me at all and they don't bother him at all.


King has a bunch of 'equipment' now.  He has a seat (basically a seat back with a strap around his waist) to help him out when he's playing on his own on the floor since his sitting is not 100% yet. He also uses a Bumbo seat on the floor, but it's a bit trickier to get to the toys when he's raised off the floor and has that between his legs.  I only use these at home when I'm not with him. He gets to play independently and I get to make dinner. Win-win ;)

He has his awesome Bumbobile that is teaching him the basics of wheeling. Our house is not yet conducive to wheeling, so his practice space is limited to the front hall and the kitchen. He uses it when we're playing outside and at his playgroups where he gets to be low to the ground where his friends and toys are.


Lastly, he has a stander. He cannot bear weight on his legs, so this holds him in a standing position to get the physical benefits of standing. He doesn't have any set guidelines for how long and how often he's supposed to be in it. I aim for every day for as long as he wants to be in it. He loves it and as long as you keep the toys coming, he's fine for an hour.

In the next six months or so, we plan to get him a mobile stander (think: stander + wheelchair) and a wee little wheelchair and that may or may not round out his equipment for the next few years. Things to consider still, but that's another post. ;)

I'm not sure that Kingsley's (lack of) eating qualifies as an SB issue or not. In a roundabout way, it does, but since there are plenty of kids without SB who don't love finger foods, it's not totally. He is still working on expanding his diet. It's getting better, but it's slow. He will eat most finger things like dried cereal and puff/chip/cheesie types of things and bread or bagels. Otherwise, oat cereal and fruit, yogurt, and those yucky jars of pureed casseroles. Blech.

He's laughing at his sister's running around the house.
Eight months ago, Kingsley's SB was still invisible. Now, it is less so. People notice that he doesn't walk. They notice that he doesn't stand or crawl or sit on his own. I am constantly being asked and then asked again and again how old he is, as if they had heard wrong or remembered incorrectly the first few times. Then there's an awkward silence while they debate whether or not to ask and I debate whether or not it's worth explaining. I have heard about everyone's son/daughter/niece/nephew/grandchild/neighbour who ever was a late walker in the meantime. ;) 

People said that SB would become our new normal and I've been thinking about that a lot lately. It doesn't feel like a new normal, it just feels like normal normal. Some kids have wildly curly hair, some babies have colic, some kids are really small or really big.  I don't have to adjust to carrying Kingsley around the house because I've never known any different. He gets carried (and snuggled), he gets cathed, he gets meds, he has therapy. It's just the way he is.


Also, Kingsley is almost 17 months old now. He's about 22lbs, which is on the small side.  He still has his big blue eyes and his hair is still blonde. He likes cars, rocking on his bike, playing in the sandbox and water table, loud banging, funny stories, tickling, looking out windows, reading books, and he thinks his sisters are hilarious. He prefers me over everyone else. He is pretty quiet when we're out in public, but when he's comfortable he has a whole bunch of words like Mama, Dada, and Nana, approximations for Rachel, more, milk, book, ball, nigh-nigh, burp, bath, bubbles, up-up (to stand up in his stander), down-down (to come out of his stander), Grandma, Grandpa, and bye-bye, and signs for all done, no, and bye-bye.  He also likes to sing. He's started to colour on the art easel, stack blocks, roll or throw balls, and put things in and out of toys. He rolls both ways and wiggles to get himself around.  He sleeps through the night. :)

Right now, we're not really living with SB, it's mostly living with us. We pass in the hall, nod and say hello, and then carry on with our day.





The other blogs that were involved in the first link are these:

http://elementaryspirits.com/2010/09/it-took-me-12-years-to-tell-this-story/
http://ourlittlegibblet.blogspot.com/2010/09/2-years.html
http://riddingfamily.blogspot.com/2010/09/gift-of-spina-bifida.html
http://lipomyelomeningocele.wordpress.com/2010/10/02/reflecting/
http://www.mistyboyd.com/?p=24
http://www.caringbridge.org/visit/lillychavez/mystory
http://www.caringbridge.org/visit/lylacespedes
http://www.mistyboyd.com/?p=32
http://www.caringbridge.org/visit/bryceanthony
http://www.livingthesunnylife.com/2010/09/bruised-heart/
http://oursbjourney.blogspot.com/2010/10/how-2-words-can-change-your-life.html

8 comments:

  1. WOW! I cannot believe that I will be squishing this boy soo sooon! Can't believe how BIG boy he is with all those skills! xo

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  2. I love this post. I feel like you have explained so much of my own life with my two year old. Kingsley is looking so big in these pictures! I am glad to hear that life is good for you right now. I love "normal" days. Thank you for sharing. Makes me want to write my own "living" post. :)

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  3. Oh boy do I know that silence so well :). Your post is so very true! I love those cloth diapers too ;).

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  4. Oh Jill, you have explained so many things so well. There is a mom or dad out there who has just gotten the diagnosis, who is loving to read this post. She/he is scared, terrified, worried, anxious, etc (all of those things we felt too). You are giving them hope. Your Kingsley is amazing, yes you have some extras, but you still live. Great post.

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  5. For us, SB is our normal. We don't know any different and neither does Caleb. This is our life, his life, his normal. I love the last picture with K on the pink and purple tricycle and then in the background I see a little booty covered in what looks like green spandex! :) Is that a new yoga pose?

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  6. Love this! It is very hard to explain how this is "normal" but you have done it very well.

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  7. Just keep being you Kingsley and you can't wrong xo

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  8. He is doing so great, such a great way to catch up on all of his success. :)

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