A Moveable Feast?

So much to write about and so little time lately…

Nikshouse is healthy again. HURRAY! Thanks everyone for your good wishes and thoughts. Nik is completely over his summer cold and I’m on the tail end of mine —having sounded like a cross between Greta Garbo and Kermit the Frog for a few days there. Believe me, it wasn’t pretty! Nik’s stoma (g-tube site) is healing nicely and doesn’t seem to bother him in the least now. If only we could figure out the ear thing. If you’ll pardon the pun, it waxes and wanes; sometimes it seems to hit out of the blue and others we can sort of predict when it’s going to be a bumpy stretch. We’re somewhere in between right now as Nik slept through the night last night for the first time in a while. Alas, Niksmom did not.

Blame that Potter kid! I finally laid my hands on a copy of the new HP book and simply couldn’t put it down until the wee hours. I feel like someone might feel after being zapped with a cruciatus curse. I have no one to blame but myself. Sigh…it was worth it! LOVED the book. I won’t spoil it for anyone by discussing it here.

Let’s see, where do I begin? Wow, all of a sudden the lyrics to the theme from Love Story started running through my head. Think about it; they’re very apt when applied to a parent-child relationship. But I digress.

Nik had his evaluations with the new PT, OT, and SLP on Monday and Tuesday. We went for his first sessions this morning and have scheduled something at least three days a week for the next few weeks. I am so impressed with the therapists already. They zeroed right in on some of the key things we’ve been concerned about within the first few minutes of the evals. The greatest part is that the OT, Miss D (not the same Miss D from school), wants to spend a great deal of time working on just sensory stuff with Nik. Hallelujah! We’ve been asking for someone to do that all school year. She’s even contacted the pediatrician about increasing the number of OT sessions per week so she can work with Nik before each of the OT and Speech sessions.

The physical set up at the facility (I’ll call it the “gym”) is wonderful. Something for nearly every level of ability to accommodate all sorts of abilities while providing challenges, too. Today, Nik actually climbed up a ladder (with some help from Miss T, the PT) to a sliding board. Not steps…A LADDER. Who knew he could do that? Certainly not I. There are separate rooms for quieter, more focused activity which is where Miss D went through a pretty rigorous brushing protocol and did lots of joint compression before trying some vestibular activities with Nik.

We’ve made an interesting discovery. Rather, I should say we’ve confirmed something we suspected. Nik has some pretty significant insecurity about not having his feet or his trunk somehow firmly grounded. Miss D put Nik in the vestibular cradle/net swing (which is only 6 inches off the ground) and he completely freaked out. Screamed himself purple, thrashed and bucked until he got himself out of the swing. This cannot possibly be the same child who used to adore being cradled in a blanket and swung through the air by his Daddy, can it?

Nik had the exact same response when he was placed on one of the large therapy balls. I know it is something that the PT and OT will help him with —developing a stronger sense of where he is in space, but it was excruciating to watch him in such a panic. Mind you, neither Miss D nor Miss T persisted in any activity once it became clear that Nik was truly panicky. But the wildness which overcame him was instantaneous and heartbreaking.

On a happier note, Miss D and Miss T both feel that the sensory work will help Nik a lot. They both said they saw a significant change in Nik’s posture and muscle tone, as well as his ability to stay focused on an activity for longer than a minute, after a good 20 minutes of sensory activities. I did see somewhat of a difference. I guess I was just wishing that it would so immediate that Nik would remain calm and focused long enough to eat lunch when we got home this morning. No such luck.

Our eval with the SLP went well, too. Miss C, actually met Nik last summer when he started at school. She worked with him once or twice before she left for one of the charter schools in our district. She works at the school and the “gym”. She’s friendly and very informative. She is going to be working with Nik on some oral motor activities as well as looking at communications methods for him. We all feel that PECS is not really an option for Nik right now as he tends to put everything in his mouth (including the cards). Plus, Nik’s secondary “obsession” after doors? VELCRO. Miss C has her work cut out, for sure. We told her all the things we’ve tried for oral motor facilitation and she was floored. Hopefully, though, with the help of Miss D and her bag of sensory tricks, we might make some headway. Stay tuned!

Nik is making tremendous growth gains lately. My little guy who was once not even ON the growth charts —adjusted for prematurity or not— has made some great catch up growth. According to the nutritionist, Nik is now hovering somewhere around the 90-95th percentile for body mass! It’s all muscle, I swear! I watch Nik’s body lengthening and his legs getting more muscular; he’s losing even the toddler look he’s had about him. My baby is turning in to a small person, a beautiful boy. I still watch him sleep at night and see glimpses of the baby in his posture —but even those are becoming fewer and fewer.

Nik is now taking a few steps on his own throughout the day. A few weeks ago he would take a step or two then his eyes would go wide —as if he wasn’t quite sure how he did that —and he would plop to the floor on his bottom. Not so anymore. Now, he actively cruises along a wall and then lets go to take a step or two, sometimes three or four, and then launches himself toward a target —a wall, a door, a leg. Sometimes he will start to sit then stoops instead and places his hands on the floor. He cannot yet stand up without holding on to something but I see him diligently figuring out the mechanics of the thing. My days of even the slightest hint of peace are numbered!

Nik is also communicating so much more. No words but so many more consistent —and affectionate and funny —gestures and sounds. Now when putting on shoes and socks, instead of simply sitting between my legs, Nik must climb onto my lap and lean as close to me as he can without actually getting into my clothing! When brushing teeth or singing our bedtime songs, he does the same; he even admonishes me with a little squawk if I am not singing the right words or if I am singing too loudly. When I comply with his wishes, he sighs and settles back against me. Or he’ll turn his little face up toward mine and smile at me with a twinkle in his eye. Yep, gets me right THERE every single time. I kiss his forehead and give him a squeeze.

We don’t really need the words, but I long for the day I might hear his little voice say “I love you, Mommy. I’ll meet you in Dreamland.” I know that there are no guarantees in this life —for anyone —and I need to accept that he may not ever be able to articulate those words in the way I would hope. That is not to say I am giving up on the idea of Nik talking —very far from it. I will make sure he has every possible chance to learn to speak; I just won’t make it the be all and end all. That Nik has a means of communicating is far more important to me than the method used.

I have lots more on my mind but I think I’ll save it for another post (or two?). As my dear friend, Mary Poppins says, “Enough is as good as a feast.”

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