Three (or four) Things Thursday

Having a young child with achondroplasia isn’t all that different from any other kid. Well…it is and it isn’t. Yes, we have plenty of appointments and there are health concerns. I’ve blogged a bit about some of the more serious complications (that we have thankfully avoided thus far). But really… this little guy is just like you and me and any other kid, just a bit smaller, that’s all.

Thank you G-W family for the awesome table. My toys are at eye level, yippee!

There are also, however, some additional (minor) side effects, if you will, of being a baby with achondroplasia. (I say ‘side effects’ with my tongue in my cheek. Where is the sarcasm font when you need it?!) ;). These are things that the average person might not think about…things that some POLPs deal with on a day to day basis.

1. The head. It’s a biggie. This poses a problem with shopping for clothes. You may have thought that finding pants would be the biggest challenge. It’s not too bad…with a sewing machine and some hemming, no problem…pants shortened. The head though..Oi vey! It does not fit through any old shirt. I’m sure the sales clerks in the stores hate me after testing every shirt in the store for its stretch factor to determine if it will maybe fit over his noggin (most don’t). And hoodies? Forget about it. If the shirt/jacket fits in the body, the hood is going to be way too small.

Yep, I’m talking about you. Can you tell that someone is teething?

2. While we’re on the topic of clothes…I have been busy over the past few weeks sorting through old clothes and organizing things to sell this weekend at a big semi-annual “parents” garage sale at our local community centre. Most of the things I’ve gathered are girl’s clothes (mountains of it from the last 5 years!), but I decided to pull a few of Declan’s baby clothes from his closet yesterday…figuring I may as well try to get rid of as much as I can. Anyways…I get the baby boy items out into the living room (and into daylight)…and yeah, there’s no way I can attempt to sell some of it. He has been army crawling since August. That is no less than eight (8!!!) months of him pulling the entire front side of his body across every single floor (and ground!) that we have encountered. To say his clothes are worn is an understatement. He may be the first baby ever to completely wear out his wardrobe before he outgrows it!

Photo from August 2012. The beginning of my army-crawler extraordinaire.

3. Well…I’ve talked about his big head…I might as well get into his chunky feet as well. I’ve been on the hunt for shoes (a good, outdoor walking shoe) for him for a few weeks. I exhausted my search in the town we live and came up short (no pun intended!). There was only one shoe in the entire town that I could actually get his foot into (and it was kind of a crummy shoe). He has small feet, but they are chubby, from top to bottom, especially. I lucked out at the first shoe store we went to in Victoria. They had a pretty good selection of Stride Rites in small sizes (one of the brands recommended by other POLPS, as a good quality shoe that comes in wide width). You can even get extra-wide in some styles, but I’m not sure if too many stores carry the extra-wide…it might be something that has to be special-ordered. I felt like the prince, trying to find my Cinderella. There were a couple of shoes that worked…but these ones seemed made for his chubby feet! They go on with ease and he’s able to move around like there’s nothing on his feet. Amazing. And I managed to find them at The Shoe Company, so I paid about $10 less than the suggested retail price. Score!

The winning shoe! ‘Ruben’ by Stride Rite.

One more thing…I think this is number four. Whoops! The rolls. You may have noticed that Declan’s arms and legs are a bit (okay, a lot!) rollie pollie. This is common with achon babies and kids. Having met many other POLPs this past year, I have seen lots of photos of other achon kids around the same age as Declan. And I must say…I haven’t seen any with quite the same rolls that Declan has. It’s interesting (well, I think so!)…the reason for the rolls. A baby with achondroplasia is born with most of his body average sized…but it has to ‘fit’ into this frame that is less than average-sized. What the heck do I mean?! Well…his spine? Average size. His muscles? Average size. His organs? Average size. That means his skin…well it’s average size! I like to say that it didn’t get the ‘genetic memo’ that his femur and humorous bones were going to be short. Hence…the rolls!

And now my point…the maintenance of those rolls (which, by the way, he will grow into as he ages and grows). After bath time every night, I have to make sure that all his creases and rolls are completely dry. I will use corn starch or baby powder in the places that are the most problematic. Because he is also quite warm a lot of the time (those with achondroplasia have a higher than average body temperature), and sweats more than the average bear…it makes keeping his rollie pollies clean and dry even more important. I must say…I’ve done a pretty darn good job these past 16 months. Until last night. While drying him off after his bath, I noticed that he has a little sore in the crease of one of his arm rolls (sad face). It looks like it should hurt, but I doctored it up a bit, and he didn’t seem bothered by it. Rather than a sleeper (with long sleeves), I put him to bed in a comfy t-shirt and a light-weight sleep sack. He sleeps on his tummy, with his arms tucked underneath his belly so it wasn’t much better this morning. I used the hair-dryer (on the cool setting) a few times today to dry it out, and put some cornstarch on it. Hopefully keeping it dry will speed up the healing.

It’s crazy how quickly these things, that never would have crossed my mind a year and a half ago, are now just a part of everyday life. Our new normal.

Sibling love. These two crack me up.


About Tammy

I am a single mother to 2 wonderful children, ages 1 and 5. My youngest was surprisingly born with a rare genetic condition, achondroplasia, which is a type of dwarfism. This blog is a glimpse into my crazy life as I wade through figuring out dwarfism and divorce while enjoying every second of my deficient domestic bliss.
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1 Response to Three (or four) Things Thursday

  1. Inês A. says:

    Interesting post. Thank you!

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