On Tuesday Aleck completed 6 months of life and for some reason it feels like a really big deal to me. I think it’s a benchmark I’ve been looking forward to for some reason, maybe because I always say babies hit their peak of cute at about 6 months (check), or that they are so much more responsive you can really interact with them at 6 months (check), and that for the most part for SIDS you are basically out of the woods (whew & check). Similar to the blog I wrote when he hit his one month mark, it’s gone by really quickly and yet has been the longest 6 months of my life. I regularly thank my lucky stars that we’ve been able to manage with Craig being the primary breadwinner since I don’t know how women go back to work after 3 months (and in some cases, 6 weeks!). It’s been non-stop action over here and I haven’t had a minute to catch my breath. Though I have slowed down a lot and am actually letting myself relax for about 45 minutes on the couch every night, no pumping, no blogging, no thank you notes, no editing, just vegetating and letting myself unwind. Which is why I haven’t been blogging quite as frequently and I’m sorry if I leave people hanging, wondering how things have been, is the oatmeal helping (yes it is, life has been sooooo much better), etc, but I’m making a concerted effort to go easier on myself.
Since October 11th it’s been go, go, go and Aleck has done more in 6 months than many people do in 20 years, and of course I’m there every step of the way. Let’s lay some of this out shall we.
1 MRI, 3 X-Rays, 1 Upper GI, 1 Swallow Study, 1 EMG, 1 CVN, 5 pediatric orthopedists, 2 pediatricians, 1 GI, 1 neurologist, 1 geneticist, 1 nutritionist, 1 physical therapist, 2 occupational therapists, 1 hip splint, 1 set of elbow splints, 5 sets of hand splints, 7 casts, 1 brace, 2 doses of anesthesia, 4 types of bottles, 3 speech pathologists, 3 social workers, 3 healthcare facilities.
At first I didn’t know how much of Aleck’s journey I wanted to share with everyone. I didn’t even want Craig announcing his birth on Facebook, I was hesitant about starting this blog, I didn’t want to post the pictures we had taken of his first days on earth, there was a lot here to wrap my head around, and my heart felt pretty broken with how badly beaten up he was when he came out. Just as we were ready to proudly exclaim that the bad shit of the past 2 years was proudly behind us we felt our enthusiasm greatly subdued by the mixed blessing, the bittersweet of a baby born with a disabling condition. I’m almost embarrassed to admit my own hang-ups at first. I couldn’t help but think, “What will people think of him?”, “What will people say about him?”, “What will people say about us?”, “Will he be accepted and loved by our friends and family or will people be scared of him and of us?”. Would we be labeled and talked about as “that couple”, the ones with the disabled baby? After we lost the first baby I had a lot of these same concerns and did have friends who pulled away from us, people who were pregnant who were scared to be around us, saw us as a reminder for what could happen during nature’s everyday miracle. And here we were again, “that couple”, “that reminder”, that story that people tell each other about what could go wrong right before they try to pretend that we don’t exist.
In those first few days we brought him home, when I watched him scream and watched as his arms were all painfully contracted, fingers twisted up together, I couldn’t help but think of circus performers from generations ago. They used to have those parts of the circus and carnivals where the “freaks” would be on display, the bearded lady, the lobster boy. Weren’t these “freaks” just regular people born a little differently? If Aleck or other kids with Arthrogryposis were born back then would they be the “lobster boy”? Needless to say it just broke my heart. I know this train of thought might sound a little extreme, but who’s even heard of Arthrogryposis? It affects about 1 in 10,000 births, even the senior doctor in my obgyn practice has only seen one case of this in the 25 years she’s been there. If Aleck had been born at a different time who knows what kind of a life he’d have. They’ve made so much progress with the treatments for this condition that you can’t even look at adults now as an image of what his life will be like, and one thing I know for sure, he’s no circus freak. He’s a gorgeous little baby boy (I might be biased) who loves nothing more than smiling and laughing and it’s definitely fair to say he’s got us wrapped around his contracted little fingers.
We’ve gotten a lot of the feeding issues worked out, so now it’s time to make things complicated again. We don’t really know if he has food allergies since we basically just threw the whole book of food issues at him to see what worked, 4 types of bottles, I gave up dairy products for 4 months, he’s on two types of acid reflux medicine and we just switched rice cereal for oatmeal, so know we want to know if he really does have any food allergies. Why should I make life more difficult now that we finally have calm feeding times? Because the formula we are using is $10 per carton more than a regular container of formula with more in it. It’s hurting our pocketbook plus we don’t really know if he’s got this allergy to begin with. This has all been cleared with our pediatrician and is something we’ve been talking about with him for a long time. I’ve been mixing the formulas, not wanting to freak out his system too much, and so far so good. Spit up has been down to a minimum and today he spit up without as much as a whimper, it was amazing. We’ve also have had fun continuing to eat our bananas, enjoying our oatmeal, and we’ve just added prunes to our diet to help soften the newly hard stools due to the addition of solids. He loves eating from the spoon and it’s definitely made feeding time more fun.
Next week we meet with the doctors about his hip surgery and he’ll go in for his 6 month shots with his pediatrician. We’ve decided to error on the side of caution and keep his braces on for the longer stretch but we will start giving him more time with them off his feet come the end of this month.
Enjoy this new batch of videos. Watch Aleck laugh, try to roll over and practice with Craig putting weight on his feet.
http://www.youtube.com/user/LynnReneePhotography?feature=mhee