Month: June 2015

Family Visit Recap in pictures 

We visited Grampy and Grammy in Tucson to celebrate their retirements mid-June. 

Hopefully that means lots more of this: 

  

Isaac appears to be blowing a kiss to Grammy here: 

  

After we got home and settled, GMa and GPa from Hawai’i were able to visit after having to delay last month due to both having bronchitis. We visited their favorite Old Town restaurant Coyote Cafe: 

   

 

GMa was just being funny here?: 

  

And a little later in the week GMa gave Isaac a trim while he stood in his stander. He did a great job of trying to hold his head up for her! 

   
 
We then celebrated Robbie’s (Isaac’s Daddy!) birthday with a toast (and our fun neighbors):

   
 

We had some cake too, but that missed picture time. 🙂

Two days later my Ate Mhener and Uncle Marc came to town from Tucson and while we missed a group photo, Isaac enjoyed our meal out together. Complete with Daddy trying to teach him ‘normal boy activities’ like sticking crayons in his nose. Haha

   
 

We are so blessed to have such a wonderful and loving family!

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Day +1,349 (Normal) Childhood Milestone Achieved! 

Guess who visited Isaac last night? Yes, we went to see his grandparents in Arizona a week and a half ago for Grampy’s well deserved retirement… Yes GMa and GPa from Hawai’i came to visit this last Thursday and went home yesterday…. Yes, sweet Jan and Audrey Bella, Gavin Marquez’ Mom and Sister came to visit in the early evening… Yes Uncle Marc and Ate Mhener came to town and we had dinner together… Out of guesses? The Tooth Fairy!!!!!! Can you believe it? 

Isaac’s bottom front teeth have become progressively loose since last September. But he is only 4 1/2 now!? So when this bottom right tooth became so loose that I could bend it almost horizontally forward and he had a bit of blood on his toothbrush and pillow case, the nervous first time Mommy in me popped out! I called the Dentist! What if he aspirated the tooth? I don’t know if it’s actually ready and should I do anything about it? Could be tomorrow or a month before it falls out on its own? Of course the receptionist reminded me that normally its best for teeth to fall out on their own. But I let her know Isaac has special circumstances that do not necessarily allow him to notify me that a tooth is rolling around in his mouth. Particularly worrying if it happened during a seizure! Dr. Job is lovely and had us come in at our earliest convenience.  

  
We got Isaac’s first dental X-ray to confirm that it was actually time to start loosing baby teeth. 


We confirmed that he is ‘Dentally Advanced’ (same term used more than two years ago when I was concerned he still had so much gum tissue around his back molars, but the dentist was surprised they were already out!). 

  
Woah! Look at all those adult teeth!!!

  

Dr. Job gently plucked Isaac’s first tooth from his mouth and gave me instructions on how to take care of the next teeth as they become ready. 

 

Isaac really didn’t mind. He took a great nap right after!

  
And the tooth fairy paid him a visit overnight! I think I was so excited about this milestone that I had the whole office excited too! He might be one of their youngest to lose a first baby tooth due to adult teeth poking their way through, and he is certainly one of their cutest and most cooperative! 

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Day +1,334 Spring and back to Busy!

Hello all and thank you for your prayers! As you may have seen on Facebook, Winter seemed to last forever and Isaac was sick continuously from the day after his birthday in November until April and then he had another cold or two after that! We have finally entered late spring!

Isaac finished his depakote wean last Sunday. Depakote was another anti-seizure medication that he tried, had no effect, or so little as to be very unsure. We had even increased the dose again after labs showed him to be less than sufficient, got to sufficient on labs without a noticeable decrease in seizures and so we took it off! It hurts me and overjoys me to see him smiling and even a couple of chuckles again this week. It hurts because the depakote went on so slowly that the sedation and numbing effect was not as glaringly obvious as some of the other seizure medications have been. Isaac was still have alert periods while on the full dose. But take it off and he’s suddenly engaged. He’s smiling again and we realized we were falling back down to a couple of half smiles a week before weaning. Pharmaceutical anti-seizure medications are so hard on the brain and body. I hate Tay-Sachs and the related seizure disorders these sweet kids suffer.

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So Sunday was Isaac’s last dose of depakote, Monday Isaac had his school teacher in the morning and then Isaac was fitted for a gait trainer in the evening. We are hoping for delivery within 2-3 months. It is going to be so amazing to teach Isaac to get around for himself!

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Tuesday Isaac had his ankle-foot orthotics (AFOs) adjusted, school teacher, Anat Baniel Instructor Margie who helped relax his spine that has been slowly contorting into scoliosis, chiropractor Dr. Steve who could feel a difference in Isaac’s nervous system (Isaac had less than 4 seizures for the day at that point!)

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and than Miss Emma. His newest addition to the team and destined to be a favorite. She did 45 minutes of music therapy with him and during that time she encourage me to sing to him because of the endorphins/serotonin released by a child’s brain in response to his mother’s voice. Isaac thought it was funny and promptly began to smile and then chuckle. Music to my ears!!! I didn’t care that he was laughing at me 😉

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We hope that you all are well and promise to update sooner this time. We still have adventures undocumented to share here with you!

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