Life with holoprosencephaly
Today I ate the most delicious veggie stew, recipe courtesy of Whole Foods:
Really, to die for. I felt the health and wellness flooding my cells!
I guess it doesn’t look as good in the picture but it sure was delicious.
 |
| From Menu |
This is Nathan’s pureed version, with a bit of rice:
 |
| From Menu |
Nathan really enjoyed it and ate the whole bowl!!
 |
| From Menu |
2.5 years ago the word Inchstones entered our life. Now, today, I speak in milinchstones – the building blocks of inchstones, which are the building blocks of milestones. Today I want to share a few milinchstones:
He didn’t stand on his own, but once he stood, he stayed up for a few seconds! Ramon was really pleased with the fact that he didn’t just collapse, that he slowly crouched down, which takes even more control than standing up. Every time I see him standing like that it makes me so happy!!!
This one is super important. It’s the first time that Ramon has applied force downards, and Nathan has fought against the downard pull and stayed standing. Ramon has tried this a bunch of times but as soon as Nathan feels the downward pull, he goes down. This means he is learning that he needs to resist, and fight, gravity to stay upright! The anti-gravitational response that Ramon always seeks is kicking in!
He stood up instantly, which is a great response rate! It usually takes him at least 20 seconds to stand, sometimes as much as 50.
Here he is controlling his head and not letting it flop up and down too much. An improvement in head control!
Look how straight he is! There is very good alignment between the head, trunk, hips and knees. He stood this way for about 3 minutes, but I just showed a short clip.
This morning at about 7 am I was in the deepest of sleeps and in the middle of an REM dream…when all of a sudden I heard a THUUUUUUUUUUUD…followed by 3 seconds of silence….followed by a loud WAAAAAAAAAAAAAAAAAAAAAAAAAAaa. In 1/10 of a second I woke up, jumped out of bed, and ran to Nathan’s room…to find him not on the bed where I left him, but on the floor. Because falling from his chair on Saturday wasn’t enough. Now, before you call the Chilean child protection agency, let me tell you that Nathan has NEVER fallen out of bed because he never moves while he sleeps. Where you put him, you find him the next morning. He will turn his head from side to side and move his arms, but that’s about it. So how he came to roll from one side of the bed to the other and to FALL is inconceivable to me!
The good news is – WOW, he moved!!! CME is working! He rolled/scooted/turned???!!! COOL!
Needless to say, I bought a little bar and now he can move all he wants without falling off the bed.
And on the WOW note, now that we’re settling in to the new apt, I went out and bought some exercise mats so we can have an area for Nathan to play, which we didn’t have at the old apt. Today it ocurred to me to have him read a book while prop sitting. And lo and behold, he held himself up while reading a book both prop and side sitting for about 5 min’s each!!!! Another amazing accomplishment!! He owes this skill to Nathalie, his wonderful OT, who worked on this for a very long time with him. I was afraid he would forget since we haven’t tried it with him for 3 or 4 months (except once at therapy with Ramon), but not only did he not forget, he did it better than before! I’m pretty stoked about this, shows that the therapy is working on multiple levels.
I hope this is the end of the bad mama chronicles and that from now on I only have beautiful things to reveal 🙂 We’re going to bed early so…GOOD NIGHT!