Monday, June 13, 2016

July 2016

July has flown by - So much fun and Bryce is staying healthy!!

We enjoy the summer book reading program at the library as well as the science projects very much.

Our Make a Wish Celebration is coming up and we are so very excited. Sofia sent us an awesome gift - Disney/Lego Kylo - he likes to ride He-man's battle cat.

The 4th of July was fun - thanks uncle Shaun for a wonderful time at Grammy's with the boys. This was a very special time for Bryce - to see his cousins and fireworks.

Puzzles continue to be so much fun!!

Cooling Down!

 Summer Fun! Wow it got hot early this year at 99 and 101!
GI Joe - Real American HERO
Well, thats what we call the army guys

Staying cool in the boat pool at Grandma's

We had a mucus plug due to the malfunction of the humidifier - fisher/Paykel, per manufacturer, there was a loose wire - we had to go to the hospital because the machine stopped working and started up again as and unfortunately water got in Bryce's tubing again. This time, he dropped to 89, I got him back up, but with repeated treatments, and 79 lowest I called 911.

We were in and out of the hospital thank  goodness he recovered well. I am so grateful for all the love and support.We spent the rest of the weekend with Grandma. I have been getting 2nd, 3rd opinions from PGE and Bear Electric for any other problems in my home that were in question besides the faulty medical equipment. Very busy.

Bryce's respiratory system has been declining with the degeneration of SMA-1. We have known that this is the routine and care plan. It never gets easier. Friends help, thought we are still working on making more friends here in Wilsonville. We miss our friends from Portland so much!!

Marsh-mellow castle

 It is with great love, faith, and support, and hopefully establishing more friends in our community that we can provide Bryce with the guidance, and strength to continue fighting this disease.

Bryce is one amazing child!! He speaks like a 5 1/2 year old, and loves to tell stories and play!!

checking out the added foundation for
marsh-mellow castle
Battle stations!!! Army guys,
 meet transformers

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.