Thursday, December 26, 2013

Albenrose Dairy - My 10 days before Christmas with Bryce

My sweet angel enjoyed his first trip to the magical place at Albenrose Dairy, "Story Book Lane."

What a fantastic day! Loved watching his eyes light up with the animals and Magical Land of Christmas.

 Bryce has been sick most of all last week, since the 15th, but with home therapies and some part-time nursing help he has almost recovered.  Its nice to get out of the house and have warmer temperatures. Even still, my stay-cation  over the past week has been just wonderful!!! I love Christmas with Bryce - we've been doing the 10 days to Christmas in Hanukah style. Every day a little fun thing to open / play with.

I've been trying to get cards out to friends and family this year. Bryce has been helping with the coloring, the stickers and he even tells me where to put the pictures.  If you are reading this and don't get a card, send me an email or text me your address. 

Bryce is talking more - I have been very happy to use the activities and communication techniques that have worked over my many years of teaching ESL. Language acquisition, sign language or "Bryce language" is rewarding especially when he says, "a hat" dogs go "arf arf" "moo" for cows, "pig sounds" for pigs. He says, "that one" "wa wa" for water or my nectar puree I make him.

Our divorce was finalized this past week. With joint custody and Bryce's care being prioritized, I am so glad to be able to move on with my life. Its very judicial now and my equitable requests were all granted.

 Lucky for me, I have a great relationship with our providers at OHSU. They love me because I was once a Doernbecher baby myself. I am alive today because the doctors were able to diagnose & treat me with Kawasaki's Disease just before it took my life as a young child.

I am in a much better place in my life now compared to in May when Steve abandoned us, emptied our bank accounts, left me homeless and penniliess without a job.  Fortunately a good family friend took us into her home and she has given us the best Christmas gift ever, "love" and "friendship." Many friends and St. Matthews have been an incredible support -  I am grateful for my friends who have helped with fundraising, spreading awareness about SMA, gift boxes of clothes, emergency food boxes, being a shoulder for me to cry on, providing me with confidence, awareness, and overall a new faith in life, God, and myself.

My goal is to help educate other mother's and women who find themselves in a situation similar to mine - not having a husband willing to provide help and who I had to obey - was chatastropic especially when he ignored my pleas of help and help me with our son's special needs.  I couldn't even go to coffee with out of town friends once in awhile, or work on Sat, or see my doctors to help me with post birth complications because he told me he couldn't care for our son.  The biggest issue that will always haunt me is that he just was brutal verbally and emotionally the first 9 months of Bryce's life; telling me there was nothing wrong with our son even when he just wasn't hitting those basic milestones. Even after the diagnosis, he simply refused to allow me to use cough assist or feeding pump when he was home. He said our son was perfect. 

I remember having to feed Bryce from November to the end of February ever 2-3 hours a day with a syringe to his mouth, feedings lasted an hour because we couldn't always get his NG tube to stay in and doctors refused to do gtube surgery as he was not an "emergency" case. We never had any nursing help or home support until I hired private nursing after Bryce's first illness in April 2013 when Bryce required 24 hours gtube feeding- never would have made it without my mom's group nor great friends who stayed the night.  My friends have been so amazing. Beyond anything I could imagine friendship to be. Now that court is over, I can begin organizing and planning for our future.

Love and Gratitude to all who have helped us out. Your love, good energy, and prayers are very powerful.

Saturday, December 14, 2013

Holidays are Here

Bryce just loves Snowmen and dollar tree is perfect
The holidays are  my favorite time of year. This year especially I am grateful for living in a beautiful home with friends, decorating the Christmas trees with Bryce, being able to see him grow stronger.

Bryce learns about 3 new signs each week. This week he signs "nona" which is Italian for  Grandma - He can sign "red" and actually speaks "Wa wa" for water and "that."   I enjoy so much participating in his daily play and activities. The physical therapy and work I do with him  especially the speech therapy has made a world of difference. We look forward to Brittany coming back as our SLP helper later this month.

Weds  Nurse Julie helped Bryce decorate the
Gingerbread Man. Mama and Bryce did
the little house.  Thank you Trish and
 Shriners for these decorating kits!!!

foam to allow some weight bearing / Foam wedge for tummy time

Bryce likes to use touch screen on my phone and is great at using the up and down arrows on my computer to look at pictures of  his daily life, schedule and his friends.

We are looking forward to the Christmas services at church. Many of our friends will be in the church play/choir.  I have starting up my MOPS group:  
The love and support from these friends and fellow moms since last year has been extremely helpful. Now, I have a chance to help those  new moms and give back to others who  helped me through y the greatest challenges of my life especially when Steve left us in April of last year 3 days after Bryce's "big" illness. This Xmas so grateful Bryce has regained his ability to communicate again and have more strength.

Our annual ginger bread
Look mama, its a house with candy
I placed Bryce on the table next
to the house and with help he was
able to reach and help decorate
Speaking of friends, its so great to continue play dates. Now that my divorce is almost final, its  having my friends who have stood by us and continue to stand by us means the world to us.  This is the greatest gift of life "friendship."

Pediatric Stander that Bryce will begin
therapy with soon.
We went to Doernbechers/Shriners this past week, Bryce's strength has impressed the doctors. I met with Dr. Sussman, super expert in SMA and orthopedics as well as the rest of Bryce's team.

They have given me the hope and encouragement I have been praying for. They casted him for KFO's which he will use as standing braces for a standing machine. They will help us get the stander and they approved him for wheelchair therapy - basically sessions that train and help put him into the correct elect

Example of Electric Wheelchaair that
Shriners said Bryce could get into soon.
ric wheel chair. 

Last month teaching Bryce
to brush his teeth / Now he does
it on his own; at mommy's
house anyways.

Bath Play / Therapy Daily


Wednesday, December 4, 2013


One of the greatest moments as a mother is watching my son's eyes light up - especially when it comes to cookies.   By far this is the most awesome activity we have done. 

Nurse Julie helped so much with this one.
She meticulously helped him get all those shiny colors on the icing. 

He's working so hard. Precious sweet boy . Finally our finished product!!