Spinning plates

We have a lot going on and a few people asking me about various things so I figured I’d write an update about all the plates that we have spinning in the air:

* Nathan has once again been fully off his prevacid for a few weeks and doing great!

* We saw the plastic surgeon who said Nathan’s palate IS high but not severe. To quote him, “This isn’t the highest palate I’ll see today”. There are no surgical interventions available to lower the palate. He asked us to make an appointment to see the ENTIRE craniofacial team, which consists of 7 different specialties, so they can follow him over time.

* Nathan had his first dentist appointment. He has no cavities and just needs a cleaning. We will do the cleaning first thing in the morning in the next few weeks so he doesn’t throw up any food (sensitive gag reflex).

* He LOVES Kelly Dorfman’s protein smoothie and has gained weight and is not throwing up any more and is generally looking healthier. We cleaned up his diet and have stopped cheating and it’s helped him tremendously.

* He is seeing Eileen, a local Feldenkrais practitioner, twice a week, and Katie, another Feldenkrais practitioner, 3 times a week. I plan on doing this for another month or two to see how much Feldenkrais can help him.

* I spoke with the team over at Rutgers University Baby Lab and we will be flying back to the lab for further testing! This is super exciting news as they will be able to give us an accurate assessment of his cognitive development. Plus we will get to see many friends while we’re there!

* He started music therapy, as you can see from the videos in the previous post. He LOVES LOVE LOVES it! His music therapist is a girl from Colombia who went to my same school. We ran into each other, 17 years later, at the grocery store in my home town. She specializes in working with kids with CP and autism. How cool is that!

* Still working on the wheelchair situation. We’ll be trying out a ThevoTwist, and if that one doesnt’ work out, we’ll probably move forward with the Quickie Iris.

* He saw his DAN doctor, who is also his reflex integration specialist, and he was amazed at how much Nathan has progressed. He said there is a definite difference in his muscle tone! He worked on integrating Nathan’s rooting reflex, which he said will make a major difference to Nathan’s oral motor skills. He also gave us some blood and urine tests to use in order to test him for allergies, neurotransmitter, metabolic panels, etc. It will take some time to see the results of this thought, but I will share them once we have them.

* We found a used Pony Walker so Nathan can have one at home, and one at school! It took a gazillion hours and some mad searching skills, but I found one!

* We’re still waiting for his swash brace and DAFOS. Once we have those, I am curious to see if Nathan will have any success wakling in the kidwalk. I had him try it again a few days ago, but it didn’t work out because of the severe scissoring and foot crossing. So once we can fix those two issues with the braces, we’ll see if we can get him to use the kidwalk as well, which would be nice because he would have his hands free and the kidwalk has bigger wheels and is easier to move.

* I finally discovered that Belle is a “High Needs Baby“. Which is why I am getting almost no sleep. Why I am exhausted all the time. Why I am barely keeping it together. She’s super lovely and incredibly demanding and super smart and quite the handful!

Comments

  1. I can’t believe how much Nathan and Bella look alike. Glad that Nathan is walking, I think if he spends some time on the Pony he will get better in the Kidwalk.

  2. http://Laura says

    Better watch out Mommy…he’s flirting with the cute girls:) They look soo cute and wow how Belle has grown…aleady sitting up! Can’t wait to see you! We’re excited about you NY visit.

  3. http://Cybell says

    Me he emocionado mucho ver a Nathan caminando en su pony,se ve muy contento escogiendo juguetes!!y el detallito de su globo en su pierna me encanta,es un gran logro e imagino lo feliz que estas,su nueva terapia de musica lo encuentro genial el interes que tiene por tocar guitarra con su Linda manito…..de verdad es muy emocionante,Belle esta Linda y muy grande pronto tendran que comprar dos guitarritas en casa!!
    Un abrazo y cariños.

     
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