Tuesday, December 29, 2015

December 2015 - Fire House Tour

Merry Christmas and Happy New Year!!

We saw Santa at the MDA Xmas Party (thanks Shriners!!)
Christmas 2015 was filled with love and many cherished memories.  Now with the his new wheels, he is learning to drive faster and with more confidence.
Mid December, as Bryce began his Christmas vacation, I was fortunate to have Fire Station 51 give us an awesome tour!
Driving through the fire house was hugely impressive for young Bryce - this was 4 days after they came to our home and rescued us from a respiratory emergency.  Bryce loved seeing the cool medical equipment, their uniform, their work out room and the amazing hoses, ladder truck etc.
Cheers for TVFR!! Our heroes!
The folks at Tualatin Fire and Rescue helped us twice in 2015 - The last, the scariest on December 13th, was Bryce's first MUCUS PLUG - really - terrifying. I had no idea this was a possibility for kids with SMA 1 - I never heard of a mucus plug and later I learned from other blogs, other mother's that this is one of the leading causes of death for children with this disease. Not being there or acting quickly enough and a child would stop breathing - In my case, Bryce said, mommy get my brace off, he started coughing, I picked him up from his brown tomato chair where he had been playing on his play tray, and at 100%, our cousins had just left from a wonderful play date.  - I hooked him up to pulse ox after removing the TSLO, it read 60, I was shocked, Bryce looked good, still talking a bit, I told my mom to get the oxygen - we had no ambu bag in our home, I tried to get him to help me suction out the blockage, we had everyone in the house, dad, grandma and I tried to get him oxygen, he improved to 80, we continued to suction, I used a plastic spoon to keep his teeth from biting the suction syringe, I finally removed an incredible amount of mucus from the back of his throat, he was still in the 80s.
The Key: I got the mucus plug out just in time, but it felt like an eternity with his alarms going, the numbers at the lowest I have ever seen, 60 for 02 -
The paramedics came in,  one young man didn't hesitate to take my word on hooking him up to oxygen with a cannula, Bryce's numbers immediately went back up to the 90's - Then they with my lead carried him to the gurney, we got into the ambulance, he started our normal routine of nebulizer / albuterol emergency - Bryce stayed fairly calm, and when we headed out of our neighborhood, his pulse normalized to 190 - his O2 continued to rise, Bryce stayed strong. He gave me the thumbs up as we loaded up into the ambulance. He was so aware, so positive, and he listened and responded so well to the treatments.
Bryce was a champ, paramedics heard me singing Rudolf to Bryce as we were heading to Doernbechers, then, they all started singing with me - Bryce was smiling and his heart rate started to decline, I was so grateful that these super heroic TVFR guys were so experienced with families and kiddos.  Bryce still looks back and remembers how the guys showed him videos on their cell phone
of start wars and frosty the snowman. 
Gratefully, we arrived at the hospital and Bryce was normalized, and doing well. Gave us all a scare, but a mucus plug it was; grateful I was to have learned  about what it was prior to the incident, but until I experienced this - I had no idea -
We now have an ambu bag in our home. NW Medical had not provided us with the proper one, it was one for a trach patient. WE now have extra oxygen and are working on getting a second stand alone o2 tank with a regulator and cannula.


Monday, December 7, 2015

My little Jedi "Fall Fun!"

May the force continue to be with us during our journey of SMA 1.
Grateful are we for Bryce's health.
Dressing up as a Jedi for Halloween,
 writing his own name,
 going to his preschool friend's birthday party at a horse camp
baking cookies
playing with cousins.

Bryce's quality of life is that of fun, use his hands and arms as much as possible and having time for breaks, resting during the day, doing activities on the couch or in bed.


At Sofia's Birthday Party

Driving around the neighborhood

Bryce and his wheelchair

Bryce is  zooming around town!!
Thank you Nu motion and Shriners. Thank you to all care providers family and friends
The first photo to the left, is day 2 at home with the electric wheel chair.
I signed the documents to start wheel chair training on January 10th 2014.   After months, at Shriner's, practice and navigational training, Oct. 28th, the wheel chair arrived.
Private health insurance paid for this chair. The state of Oregon does not pay for children to have an electric wheel chair because they don't feel its necessary for kids to drive and move independently when they have a care provider who can push them in a manual chair.
(a lobbying motion / bill - appeal I will attend to later in life)
Bryce loves being able to move around by himself, go to school, drive the local stores, drive around the library, Memorial Park, etc.

Wednesday, October 7, 2015

FALL 2015

A morning at the park

Tuesday, September 8, 2015

Spring and Summer 2015

Where does the time go? At last, I am updating this blog after several months. We are settling into our community and have made so  many new friends -

Excellent news - Our swimming routine is back - April at Shriner's introduced us to some new flotation devices. Bryce's ability to move around in the water is phenomenal.

Bryce's is on track after more than 2 years of training to get his electric wheel chair hopefully in just 6-8 weeks from now.

Last, sadly, mommy's car died. But we were able to get into another vehicle rather quickly with the help of Toyota in Wilsonville. And mommy is back to teaching full time-



Spring brought us more than good weather. Wonderful times at the Tulip Festival and lovely family days on the weekends.

Great to see Bryce learning so much and moving more.

His daily therapies and care seem to be terrific. The stander is a blessing. He really likes using it.  He loves to have a balance of time on the floor, with standing, with his brown chair and table as well as his wombat chair for meal time.

Tuesday, April 21, 2015


Bryce loves being outside. We are so blessed this spring that everyone is  healthy and cousins play together.

Sunday, April 12, 2015

Spring 2015

Motherhood has a very humanizing effect. Everything gets reduced to essentials.
~Meryl Streep

Spring has brought us some wonderful surprises
This year - A stander for Bryce, an Easter egg hunt, tulips and so much more. Its a joy to see him enjoying playing in the dirt for the first time with his cousins and standing up and exploring the world in a new way.

With all the blessings in life -
 here is another quote I like very much!

No language can express the power, and beauty, and heroism, and majesty of a mother’s love. 
 ~Edwin Hubbell Chapin

Sunday, February 8, 2015

Happy 3 Years Bryce!

Happy Birthday Bryce!!

My sweet darling angel turned 3.

What a celebration we had. Thanks to grandma, uncle Shaun, and our very very dear friends.

Bryce holding baby Lila, a darling doll his great grandmother made for his mother.

How wonderful to see everyone again - to see such joy on the children's faces.

Blowing balloons, throwing them, playing pirates, such a delight.

Excellent fun!!

Monday, January 12, 2015

Merry Christmas and Happy New Year!

This holiday season was one of the most memorable. We are beyond grateful for our home and to get our own tree.  I cut down our Christmas tree from a local farmer just outside of our little town, Decorating it was fun and with lights from friends, a paper star, and other crafts that Bryce made this tree was amazing.

The best part of all, we were able to share this holiday season with many of our friends and family - We really felt the true gift of Xmas this year.

We were able to share the "North Pole" experience actually its the beautiful Oregon Garden that has a lovely exhibit with Santa each year in Silverton - But my angel just loved learning about the Polar Express and he kinda nicknamed the whole trip as our own  little Polar Express.

We are so grateful to nurse Liz who has become part of our family so quickly. With her help, I have been able to return to teaching and finding time to finish projects and  take care of me. My new friends in my community are wonderful and I have become part of the local art association.

Among the highlights of the past couple months - Bryce singing the entire song of "Bob the Builder," "Rudolf the Red Nosed Reindeer," But now he loves to do short clips from the movie with Tom Hanks and the Polar Express where the conductor says, "all aboard" and many others fun lines from the movie-

When doctors told us SMA-1 was similiar to ALS (Lou Gerrigs Disease) - I had no idea what to expect - I suppose doctors are not always right Bryce will be turning 3 in January and living 1 year past his original diagnosis.

Never in my life have I ever been so happy- to be a mother of such a gorgeous and special smart clever boy! I just love how we are like to peas in a pod - we both love legos, puzzles, and reading. Of course "Where's Waldo" that is the best!

- Bryce is a living miracle and we don't talk about his diagnosis anymore - I don't hate SMA like I used to either - it has just become part of who we are and how we keep fighting - AND how we keep living and cherishing every day!