Again, may not seem like a lot but, to me…WOW!!!!! He is sitting up! Holding The Head in mid-line (mostly)! WOW! He is indian sitting, using his arms slightly for support (not much), and holding up The Head!!! I can’t believe I just typed that!
I’m so excited. Today, all day, I noticed that he seems to have more control over his head. When I carry him around and do stuff with him, my default is to always support the head…but the last couple of days I’m finding I don’t need to as much! I can support him by the waist and he is mostly keeping up his head and trunk! The trunk is quite slouched still, but he’s trying to hold it! It was just a couple of weeks ago that I posted about my dream of seeing Nathan holding up his head…now I got to see him do it!
Of course it’s not consistent, but he lasted several minutes – about 10 – and once it’s been done, it can be done again! Go Nathan! I’m so proud of you!
On another note, you may be wondering why he had that sorta glazed, dazed look. Well, we did absolutely positively NOTHING today. Neither of us made it out of pijamas (hence the crazy hairdo). It’s the first day since we got to Chile where we genuinely do absolutely nothing (well that’s not entirely true, we did take scruffy Lucky out for a few walks in our pijamas). It was lovely. But we mostly watched TV so he had that sorta hypnotized stare that he gets when he watches more than an hour or so of TV, which is why I generally don’t allow him to. But…it motivated him to hold up The Head! Wohooo!
I leave you with a couple of pictures:
THE HEAD looks amazing!!
I am so proud of that big boy.
I know you are thrilled.
I LOVE THE HEAD!!!
How awesome! I love his hairdo:)
completely off topic, one of the word verifications was “dweebs”, I thought that was funny word!
Way to go, Nathan!!!!!
Ay Marcela que lindo!!. Me ha parecido tan enternecedor su carita de estar encantado con los dibujos de la tele, y sabes una cosa: Me recuerda a Cova con su boquita abierta y sus ojos sin despegarse de la tele. jijiijiji. Si, si que está sosteniendo su cabezita fenomenal!. FELICIDADES A los dos!
Whit – THANKS!!! I know I kept pinching myself! I couldn’t believe it! It’s the first time that he’s somewhat vertical and able to maintain some control! I think if he can get The Head component to work, other skills will soon follow 🙂
Carla – I don’t know what to do about that hair! It’s wild! I know, I laugh every time I verify, they put up the most random things!
Kristina – thanks! I’m so glad to hear Emma’s appt w/ the audiologist went well, I can’t wait to hear how things go once the other CI is turned on!
Kenia – GRACIAS! Pues mi hijo definitivamente es nieto de su abuela y bisnieto de su bisabuela – ambas son fanaticas a la TV! AMA la television! Y yo, pues no tengo problema con usar este amor para hacerle un poco de terapia..hehehe. Besos a la Cova linda!
Nathan looks amazing!!
Why was the last CME crappy? Is Nathan tired by that time? I guess I was wondering your definition of crappy- uncooperative son or no progress noted?
I was also wondering if Nathan had a specific sound/vocalization for you- his daddy-books- anything like that? It kinda seemed like he ‘got it’ with the Pooh book…again- just wondering-
He’s amazing….
WOW Marcela, He looks WONDERFUL!!!!! Way to Go Nathan!!!! High Fives from your friend Mr. Timmy^^^^^
Marcela, continue with whatever it is that you are dooing with Mr. Nathan. You sure have found the magic whatever it is.
I too, believe in dreams coming true. In my dream the other night, Timmy was walking before our next visit to NIH (in the Spring). We shall see. That seems like a long shot to me.
Hi Sally…good questions 🙂 Ramon says Nathan is very emotional. If he’s “into it” he works GREAT…if he’s not into it, then he mostly complains and hardly cooperates with the exercises. Of all the kids he works with, he says Nathan is the most emotional one, where his emotions/cognition rule the way his appointments go. Today he was just not willing to work (might be related to spending a whole day Sunday watching TV??!!). But that’s how it goes, every single session is different, and even if I do everything “right” – healthy lunch, good nap, enough sleep – I never know what kind of mood he’ll be in for therapy. If he’s uncooperative, we typically see less progress – too much of his energy goes towards resisting. When he chooses to cooperate, he typically performs the exercises better. But I don’t worry about it, I think in general the curve is trending upwards, and that’s what’s most important. He’s also learning discipline – that even when he doesn’t want to cooperate, he still has to go through his exercises, which I think is extremely valid and valuable.
As for vocalizations…it depends. When it comes to speech, Nathan doesn’t have clear, established neural pathways. At times neurons connect and he has definite sounds for definite things…but then they lose the connection and he can’t make the same sounds. But he will sometimes say “ma” for mommy, “mo” for more and for elmo, “ya” for yeah, and rarely “da” for daddy. But unfortunately his sounds are inconsistent. Lately he’s been experimenting with more sounds and sometimes I hear him say things that sound just like what he’s doing – like “pooh” or “moo” when he’s looking at a cow.
Thanks for stopping by and for your questions!!
Hi Donna, thank you!!! Your encouragement means a lot! I think it’s amazing what dreams can do, once the “seed” is planted in our mind, if we water it with belief, then it’s only a matter of time 🙂
Told you!!! One day out of the blue bam!!! Love you Nathan!! Way to go!! Maxx and I are rooting for you!!! More good things to come!
Miss you guys!
Hola,
Me llamo Adriano, soy portugues y vivo en Francia. Me pongo en contacto contigo porque tengo una prima que tiene un hijo con el mismo problema que Nathan. Su madre buscando por internet informacion sobre su enfermedad ha descubierta tu pagina pero no se atreve en decirte algo por culpa del idioma asi que lo hago yo. Su hijo se llama Daniel, tiene 30 meses. En el caso de mi prima no han detectado la enfermedad durante el embarazo, solo ha sido cuando Daniel ya tenia 6 meses de vida . Tiene una microsefalia semilovaire. No habla, no camina, no controla sus movimientos, si logra llevar la mano a su boca se muerde, se asusta frequentemente y llora mucho. Me pongo en contacto contigo, primero para darte apoio y felicitarte en tu lucha. Tambien te quiero pedir si puedes dar alguna informacion y consejos para que puedamos infrentar esta situacion delicada. Te dejo mi mail pereiraadriano@yahoo.fr
Espero que me digas algo.
Un saludo muy fuerte y besitos para Nathan.
Perdona, solo quiero rectificar dos cosas:
– tiene una Holoprosencephaly semi-lobaire y Microcephaly.
– Daniel no llora mucho, de echo esta siempre sonriente. Solo le pasa cuando se asusta.
Notamos que es muy parecido con Nathan, tiene la misma sonrisa, se comunica de la misma manera, las miradas, las expreciones faciales.