Update on Nathan

Ask…and you shall receive. After my post last week where I mentioned my desire to integrate everything we’ve done for Nathan into a routine…things changed. It looks like it’s all coming together!

Here’s how it’s all coming together:

1. ABM. Nathan started an ABM intensive today. Victoria came to the house and worked with Nathan for 45 minutes. Our plan is to do ABM every day for the next month or two.

2. ABR. We’ve been communicating with Leonid Bylum, the inventor of ABR, and he’s given us a series of exercises to strengthen Nathan’s neck. I will write a whole post on this soon, but for today, I’ll only mention this as it pertains to Nathan’s schedule. The wonderful Mary is coming to the house every day for 2 hours to do ABR on Nathan. She does the neck exercise for 1.5 hours, and then takes him out for a tricycle ride for the last 30 minutes.

3. Communications. Starting in a week or two, Nathan will have his old speech therapist, the amazing Mrs. Nikki, coming to the house to work with him once a week. She will work with him on the Dynavox and on other communication methods. Every day, we will work on the homework that she gives us so we can start really emphasizing communication with Nathan.

4. OT. The fabulous Mrs. Ronna will come to the house twice a month to work with Nathan on OT / Speech. She will support Mrs. Nikki on building a communication plan for Nathan, and helping us to implement it. Once a week, Nathan’s incredible early intervention OT will come to work with Nathan on traditional OT stuff

5. Education. I am talking to a lawyer so we can get help working with Nathan’s school. More on this later. My goal is to maximize the time Nathan spends at school so it’s not wasted time, and so that the time he is at school he is learning useful skills that build on what we’re doing at home.

6. We found Nanny McPhee. She heard my plea and came to us. Marta is a Colombian lady who we met through another parent of a child with CP in our area. She was looking for a child to love and work with and we were looking for someone willing to “go the distance” with Nathan. She will be helping me to implement all those other things that I was worried he wasn’t getting to do.

Here’s what Nathan’s schedule looks like, as of this week:

8 – 12:30 School
12:30 lunch
1 ABM
1:45 Nap
2:30 Stander / Dynavox

3 Playing on his back / Cold Laser Therapy
3:30 Hart Walker
4 Snack
4:15 ABR
5:45 Pool
6:15 Dinner
6:40 Tricycle

7 Out with dad
8 Bedtime

This will of course change a little, especially as we have to accommodate his Speech therapy appointments, but in general this will be what the schedule looks like. Our plan is to phase out his nap completely since Nathan is almost 4 now and we think he’ll be okay without napping.

So between Mary and Marta we have 2 wonderful Nanny McPhee’s that will help us integrate all of Nathan’s therapies in a consistent manner. I believe that if we can stick to a consistent schedule, Nathan will start showing progress in all of these areas!

As you can tell by my use of adjectives in this post, I am thrilled with the “team” that we have gathered around Nathan and I feel strongly that this team will really help Nathan stay healthy and make progress.

I leave you with a cute video 🙂

PS. Sorry I’ve been out of touch with everyone! I’ve been in hibernation! I didn’t get to enjoy the newborn period with Nathan so I am doing my best to really enjoy every minute of this time with Belle. I keep my phone off most of the day and stay away from the computer. Plus every time I sit down at the PC, Belle squeaks. She likes to be held 🙂 Please forgive my silence!

Comments

  1. WOW! your schedule is impressive. I need to take notes from you! Nathan loks awesome in his tricycle, what a happy kid:)

  2. http://Lori%20Harris says

    Awesome plan!!! It sounds great…could you share your ABR head control exercises??!!! My daughter needs them! Keep up the great work and good luck with your team! And enjoy that precious baby!!!!

  3. Sounds like a great plan! Oh, that video! The birds chirping, the sun shining–it all looks fabulous.

    Charlie is still jealous of the computer:)

  4. http://margaret says

    thanks for the info u provided, do you think ur son getting any results for ABR therapy? cause we also do ABR therapy on my daughter, but still we are not sure we are on the right way, can we share? or can i grab u thru email? thanks…

  5. http://margaret says

    u have an impressive explanation, but i dont have any info about CME so far, cause we live in indonesia, most of us only do Glenn Doman therapy, but the result as u said is not so effective for the severe brain injured children, thanks so much! im longing for sharing any info with you, that would help us a lot, really appreciate it..send my best regards to Nathan..xoxo..

  6. http://cristy%20edwards says

    i have a question about the alternative therapies that you have tried . are any of these covered by insurance ? i would like to try some of these to my daughter but noot sure about the financial aspect . how could you afford all of these if not covered by insurance. my daughter has mild cp , she is 3 yrs old , is able to walk without walker but wants her to improve as much as she can. i’m a physical therapist myself.

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