He Works Hard For His Money

I thought it might be well past time for me to write specifically about the progress Aleck has made during his first 10 months of life, especially since his hip surgery is only 7 days away (yikes).  So this is a long entry as we’ve come a long way since our little man was brought into our lives. I don’t really know how familiar everyone is with how much mobility Aleck was born with so I’ll try to outline it all right here.  Just to warn you I’m now a prime example of a little knowledge being a dangerous thing.  I spend most of my time with Aleck’s team of therapists and doctors who use expressions like “bringing to midline” or “active flexion” vs “passive flexion” so if I use any of these terms incorrectly please just excuse my very limited technical vocabulary.

When Aleck was born he didn’t move his arms, his legs, his feet, and had some very small motion in his hands, and had limited basic body movement.  It used to break my heart  watching him cry, something he did almost every second of every day for the first 5 months, because I could see how much he wanted to move and flail about, but mostly he would rotate his midsection from side to side and the arms would swing in direct reaction to that movement.  Standing over his crib I couldn’t help but get a glimpse of what he might be like as he got older, his arms like two dead weights hanging down at the side of his body.  Most of the videos we’ve seen of older kids with Arthrogryposis look like this, the good ones can walk but their arms are stuck at their sides, most of the time serving them no purpose whatsoever.  As a little baby with this lack of movement he just looked so pathetic to me, so helpless, so trapped.

What he would do is he would move his thumb, gently up and down on one of my fingers as he would nurse, the smallest little movement but one that constantly gave us hope.  Soon after I noticed that when I would go to put him down after nursing, one of his arms would get stuck in my shirt.  I thought this was hilarious, the boy who can’t move his arms, can get one down my shirt everyday and all the time.  At first I just dismissed it to my own doing, wearing low cut shirts, not being careful when I buckled myself back in, but after a while I had to give the credit where it was due, this little man was purposely getting that arm down my shirt.  More hope.

After we began casting the right leg the left leg developed a huge personality, telling me what the rest of Aleck liked and especially what he didn’t like.  Because of the splint he was wearing to put the left hip back in place it was more of his foot that was doing all the talking, hence “the foot of self-expression” but as he got bigger it became clear that this was more than a foot talking, it was a whole leg of conversation and preferences.  My OT noticed she’d get kicked when Aleck was done with her stretching and wanted him to play.  Our first game was to bring out a plastic chicken with lights that spun around in a circle and made a light vibration.  It was Aleck’s job to try and lift his hands towards the chicken.  First we just put his hands on the chicken, demonstrated the vibration, but eventually he started using his momentum to make this small movement just so that he could see the lights turn on.  Now we have a household of these light up Easter toys that are a huge hit with kids and adults of all ages.

When he was three months old we all saw (or can see if you go to the videos), Aleck’s first attempt to touch anything with his upper body (besides my chest of course).  In order to reach the elephant rattle on his play gym he had to throw his entire body over to one side, cast included.  I would sit in front of him, encouraging him to get it, leading his arms and hands up there, helping him when he got cranky, and leaving him alone when he wanted to do it on his own.  Even with the cast on he could use the full momentum of his body to hit the rattle, but then it became frustrating for him since he wanted to see the rattle when he hit it.  Once we started OT this game was left in the dust for a bit.  But a few months ago I set him back down in that gym one more time and it was amazing.  He was boxing the rattle with both hands without taking his eyes off the prize, like a fighter working his speedbag.  No help from his legs, no help from his midsection, just the arms, rising up to make that elephant go, go, go.

Basically, with the upper body, it’s been going like this; first we worked on movement while he was lying down, both on his back and on his side.  Initially he was able to do small movements, a little bit of lifting of the arm to touch his light up toys, then we worked on bringing those hands to the center of his body, or getting them in midline.  With this movement he could hold onto this own hands which became a ritual before bed and naps to give him some extra comfort.  He actually began doing it on his own while I would change his diaper, and it seemed this involuntary movement, looking at me but bringing those hands together.  When I would try to recreate the movement during play he couldn’t quite get it for a while, yet he was doing it all the time on his own.  This movement was the biggest piece of hope we had gotten in the first six months of his life.  The therapists couldn’t stress enough to me that if he could bring his hands midline, that was a huge accomplishment, a major milestone we should be looking out for, and here he was, doing it without even trying.  I couldn’t help but wonder, is this a misdiagnosis?  How correctable is Aleck’s form of this condition, if this is in fact what he has?  Are we going to look back on this time in pure amazement, like the whole thing was a bad dream as he bring our fully functioning, perfectly mobile, little boy to his first day of school?  At at time when my medical fatigue had hit an all time high, this was exactly what I needed to keep me moving forward.

Shortly afterwards he started holding onto things all on his own.  First our fingers, which seem to give him a constant source of comfort as he holds onto mine during his bottles, and in the middle of the night when he wakes up crying I can often calm him down with a pacifier and my hand to hold onto.  Then it was his beads, they look like Mardi Gras beads that you get a party store and he would roll them in between his thumb and forefinger.  Next up it was his maracas.  To get him interested in those my OT would velcro them into his active splints, the splints she made for him to assist with his grip, and show him that if he brought his hands together he could bang them  into each other and make great noises.  It was the first game he could play on his own.  I could strap them into each hand and go throw in a load of laundry or prepare his lunch.  Finally, a bit of relief from the non-stop mommy entertainment factory.  And we’ve only gone up from here.  Now he can do this activity sitting up, and it’s much harder to move his arms while sitting than while on his back since he has gravity working against him.  But every week he can raise those arms a little higher.

Recently he learned how to reach over from one side to the other.  For example, while on his changing table he can reach his right hand across his body to grab his ladybug that sits right by his left hand, grab her leg, and drag her across his body.  And for every movement he learns how to do while lying down, he eventually figures out how to do sitting up as well.  While sitting in his car seat he can now reach his right arm over his left side to hit the button on his baby Ipod (a little baby toy that lights up and plays music).  When I first strapped that toy to his car seat I never thought he’d be able to operate it himself.  I used to keep in on a longer chain just so I could reach behind me while driving to and from Children’s every week to calm him down after a traumatic casting session.  He still can’t reach Wiggles, his bug toy that hangs down (see pictures) himself, but he’s lifting those arms higher everyday, so we’ve got hope.

As he gets older, he really is moving more and more like the kind of baby I pictured in my mind.  He’s trying to flip himself over to get out of his bouncy seat on a regular basis, and flips himself multiple times on the changing table while I’m trying to change his diaper.  When I pick him up, if I’m wearing a necklace, he can now reach and grab my necklace, even pulling on it so my airways get a little too tight, something I’ve seen babies do to their mommies my whole life, and something I’m so exciting about I choose my necklace based on him grabbing at it. Yup, I want to choke, it’s totally worth it.  He even has to get a slight bend in his elbows for some of my shorter necklaces and seeing him purposefully bending those bows, as we call it, makes my entire body sing.

But we still have a long road ahead of us.  There seems to be a disconnect in trying to get his hands to his mouth.  He wants the Cheerio, he can hold the Cheerio, but he resists the idea of getting the Cheerio to his mouth if he’s the one holding it.  So we are practicing with long cookies, we are practicing holding spoons, and we are trying to get him interested in holding his bottle.  When we are running errands and it’s time for a bottle I have to pull over, or find a place where I can plant myself, and give him his bottle.  Often I’ll see in the car next to me, a baby about Aleck’s age, holding their own bottle while the mom is driving the car.  This is a big hurdle, but it’s such a crucial connection that he needs to make.  He wants to eat pieces of food rather than baby food lately, even without teeth he can now gum a pancake (or a 1/8 of a pancake), some avocado, banana, and even thinly sliced turkey, but I have to sit in front of him feeding him each and every bite.  My pediatrician reminded me that I need to be careful with food pieces, I can leave him alone to stuff his face, he can choke, etc.  I just sat there and looked at him, and waited for him to correct himself, “Oh yeah, you sit right in front of him.”  Duh.  Aleck has been more interested in playing with his food, fingering the textures, and even wanted the spoon full of oatmeal from me this morning, holding the stem in one hand and rubbing his fingers in the oatmeal with the other.  Again, I’m having visions of this regular moving baby, glimpses of the potential future, and it is awesome.

For now we are done with our hard plastic elbow splints as Aleck has become resistant to them, not relaxing enough to let us get them on to make any real progress, and he’s stopped handing me his hands to put on his streching splints before naps, insisting instead on trying to flip himself over again and again while I try to hold him down and get them velcroed in place.  The one good thing about the cast from his upcoming surgery, is that it will force us to work on nothing but the upper body for the next two months, both in physical therapy and in occupational therapy.  It will also force Aleck to work on nothing but the mobility of his upper body as he’ll be pretty weighed down from the chest downwards.

The surgery is on Wednesday the 29th of August so please send us your good thoughts and positive vibes.  I’ll try to get one more blog post out the night before or so but check Facebook and Twitter for the best updates on his status.  If you want to follow but we aren’t friends on Facebook you can also like my professional page, Lynn Renee Photography, as this will be the easiest way for us to get the news out to as many people as possible right away.

Check the videos page for new videos documenting Aleck’s progress in movement, he really is doing amazingly well, and right now, the sky is the limit.