Monday, June 13, 2016

Spring Fun 2016!!

As spring approached very early this year, allergies were in the air - Bryce did have his first hospital stay in May - again the Rhinovirus- He missed about 6 weeks of school so i home-schooled Bryce during his recovery.

We just miss having friends - hoping o make more friends this year and at church.

Bryce's teacher Molly gave the kids "mini m&m's" and this has been quite the treat!! Its such a joy for Bryce to pick a color and eat this wonderful little piece of chocolate. The mini's are much smaller and softer. (of course I watch him very carefully for any swallowing difficulties - we are cleared for soft foods and most liquids at this point - food and beverage are just for fun - everything else is still fed by g-tube throughout the day/night)


Other Food Adventures: We enjoy tasting milk chocolate vs dark chocolate - we dip chips and soften them in salsa - feta, smoked cheddar, sharp cheddar, and mozzarella are still his favorites - he loves my slow cooked meats and soft carrots, tomatoes from the local farms are still a hit.

Bryce loves to make sandwiches on his own with cheese slices, pepperoni, and flotillas - he loves dipping into different sauces - ranch, mustard -etc. Oddly he thinks ketchup is spicy. So we moved to heinz sauce which he loves. He loves my home-made meatballs, lasagna, breads, and bread sticks I've been making again.

As we often make dinner together or he helps stir up the pastry dough or water and yeast, he loves sitting in his wombat chair near me and he and I play together while I cook.  He loves grandma's gift of letters, and is so good and starting to spell words.  I have to admit, my friend said phonics are a hit, but phonics really have been amazing at helping Bryce learn to read and spell.

Racing cars, zooming cars across the house-
all is fun for this little man - thank you grandma
for all the tracks and cars.
Still loving the opportunity to throw balls - ping pong balls
still are the prefect ball - we have a few new small rubber ones
he loves to throw - he also loves to hit the balls and play baseball
using a modified bat: made from  the inner cardboard of  paper towels





Bryce loves playing games - puzzles, and is quite good at putting together 25 - 50 - 100 puzzles sets especially spiderman, Ninja Turtles etc.  We love the game Spot It, that our dearest friend Teresa gave us. We often spend most of the day playing games, legos, singing songs, doing pre-school activities, crafts, while balancing that with gtube feedings, meal time, rest time, and exercise / floor time to rest his head and back.

We met with the pulmonologist, Dr. Tim Murphy, who encouraged a consult with a spine surgeon, Dr. D'Mato here at Shriner's for a future implant of magnetic rods to lengthen his spine to allow for the growth of his lungs - a potential lengthening of our time with Bryce by several years: is the hope.


The caveat to this surgery is that there has never been  a child with SMA-1 to undergo such an endeavor. A blessing perhaps yet we are still considering our options.





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