Woe, The Head…

I’ve noticed that if I allow myself to get overly tired, it’s harder to stay positive. Well a good night’s sleep seems like a childhood memory, it’s been that long since I’ve had one.

While in a funky exhausted mood I started dwelling on “The Head”. This is the big ugly monster that terrorizes me during the day while my thoughts wander. It is the dark ugly cloud in my life. It’s the single most frustrating part of this journey for me.

Sometimes when I look at tiny winy 6 week old babies with their strong straight little heads it makes me want to weep. I saw one of those today and it unhinged me.

The thing is, Nathan’s head control is so darn poor. It seems that no amount of therapy can get The Head to stay where it’s supposed to. I don’t think I’ve ever seen Nathan maintain The Head in correct alignment for more than 2 seconds, ever. I don’t understand it. I’ve seen amazing improvements with his ability to bear weight. He’s even coming along a little bit with his trunk. Some balance has kicked in. But The Head seems untouchable.

I was looking over some CME videos. And I honestly feel that The Head is holding him back. I see videos where he is supporting his weight and even his trunk is up, but the head bobbles and down or back he goes. Forwards, backwards, left, right. Ramon was working on aerials today, and he was able to stay up for a while, but then The Head would bobble forward, the trunk would follow, and we’d end up with a heap on the floor.

But the worst is the wheelchair. The chair itself doesn’t have proper head support. It relies on the child to have minimal head control. So in a 5 min stroll in the chair, I have to fix him about 67 times. Even if I recline him and tilt him back (unless he’s alllll the way back and pretty much laying down). What he does is he constantly lifts The Head forward, but he can’t keep it properly aligned for even a tenth of a second, so then it falls to the side. I fix him, a second later he does it again. I fix him again. The Head bobbles again. It’s the most disheartening dance I’ve ever experienced. If I lean him all the way back, he gets furious because he likes to be upright to observe the world. Oulla, Youseff’s mom, suggested I leave him. She said eventually he will have to find a way to fix himself. I have tried it, but he doesn’t. He just hangs halfway out of his chair like a rag doll, and stays. I would leave him like that, waiting for the day where he magically realigns himself properly, but I can’t handle The Stares. Everyone. Stares. They shoot darts at me, like I’m the worst person in the world for letting my kid hang half out of his chair like that. So I fix him. And the dance begins again.

Let me end this post with a most sincere plea for help. I cannot let The Head win this battle. But I need help. What have you done with your child that has helped to improve their head control? Has anyone heard of any special exercises? Drugs? Torture devices? I’ll try anything. Please, HEEELLLPPPPPP!!!!

(Btw… I hope you guys can pick up when I use sarcasm? I’m not serious about torture devices, really, I mean it )

PS. I’ve just come back from water polo feeling much better, nothing a few good blocks can’t cure 🙂

PPS. Add banana and nutella to the mix and you have one happy momma

Comments

  1. ABR and PATIENCE.
    Head control is the result of many many many muscles and parts of our structure, so you can’t get it in two weeks or two months.
    Now, after working all parts of the neck, we are addressing with ABR more profound areas that are making her head not collapsing. 4 months ago it was like a flat thing trying to balance over a ball: it can get up, but it wont last longer thatn 5 seconds.

    But well, that’s just me, the ABR fan 🙂

  2. http://Andrea says

    I wanted to tell u that I’m soo excited for u and ur soon to b new baby!!!! I was reading ur blog and I thought I would comment on it. Emily will soon b 6!!!! Time just flew by……. and she goes to school for most of the day. Her head control has made such improvement over the last few years just by keeping her interested in things and people that are at eye level with her. I also let her rest for an hour after school then we sit on the floor together and watch tv for a while. The Tv is placed where she has to look up at it, to see it. She can sit by herself for atleast a minute without falling to one side. If I help to keep her trunk balanced she could sit there and watch TV for 15-20 min without dropping her head! A big Thank You to Hanna Montana and Jon and Kate plus Eight for that one! Emily’s two favorite shows. I hope this was helpful.

  3. Sonia, right now we’re working for 1-2 hours a day on chest. We’re trying to strengthen him there so he doesn’t have respiratory issues. I was planning on making one of the upcoming trainings (in Venezuela or Argentina) so we can start the other exercises.

    Andrea, thanks !!! We are excited too, and we think it’ll be wonderful for our family 🙂 I can’t believe she is already going to turn 6! Are you having a party for her? I am so excited to hear she has made improvements with head control. How wonderful!! Summer, Ryland’s mom, tells me that Ry’s head control got better with time. But you know me, patience isn’t oen of my virtues, I want his head to improve now so he can do better with his CME. We try getting Nathan to sit while watching TV but his head flops to the sides. He can watch tv with his head at a 90 degree angle. But I’ll keep trying! That’s funny that she likes Kate + 8 !!! Keep me posted with how Emiy Rose is doing!!!! Hugs to both of you!

  4. I had to laugh when I read you are not married, we are not married either and like you the marriage thing gets put the side when planning Elizabeth’s life and therapy. I really want to do it this year before we try to have another baby.
    As for head control, have you tried kinesiotaping? I am fairly sure I have seen a blog post by a mom who taped her son’s neck (check Liams link on my blog). The tape might give Nathan some input to keep his head up. The tape might be close to a torture device though. We do use it for Elizabeth’s knees and since I started taping her this week she has slept all night and not woken with her normal knee pain.

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