Wednesday, March 27, 2013

Life

What a great spring we are having! I am so happy to get out of the house. I loved seeing the cherry blossoms along the waterfront Monday with Bry Bry.  We met up with our friends and it was so special. We have been enjoying play dates and I just love watching Bryce interact with his little friends. Children are such angels and so delightful.

Bryce was 17.2 lbs last week and we had a wonderful passover (seder) with our friends.  The ritual was very family friendly and we told the story of Moses, ate, and sang songs.
 


Our current situation is that he is not tolerating his g-tube feedings right now.  The lesson I am learning over and over again is to ask for patience and understanding. I am super grateful for our neighbor's amazing timing as she came by today with another amazing soup. .She teaches me about the art of giving and grace. She made the nicest Easter basket for Bryce with a book, home-made card with his favorite -stickers!!! And the bubbles -oh, they are the best ever!!

The new mom's group I have joined at St. Mathews is amazing!! I enjoy talking with the other moms and having a little "me" time. I learned a great deal from the guest from Gymboree who gave excellent tips on making indoor playtime super fun. We don't really have the same opportunitiec to play these games, but it was nice to listen and I felt more confident in how I create play time at home. My dancing, the music, the books, our big boxes, stickers, and trains etc.   I have to bring the excitement and the world to my son in a way so he can enjoy each day.  We are hoping to do Easter eggs with grandpa tomorrow. We have been looking forward to his visit.

Now it comes to some of the trials and tribulations of a g-tube. Life is not any easier. Bryce simply isn't tolerating the feeds. We have to figure out is it really the tube itself, his stomach muscles, his acid reflux, so do we adjust medicine dosing or what just identify what is going on.  12-13 days now of him throwing up after his feeds pretty continuously in the day and through the night. I am up sometimes for hours like last night from 2-6 am. holding him. Making sure he doesn't aspirate or vomit again.  Thanks to Steve, I slept from 6-8. Days like today where he seems fine but then throws up again and again, it just wears me out. The laundry problem is the least of my worries... I just find it challenging to not be able to feed my baby when I know he is hungry. Its comforting to know we have the best pediatrician in Oregon. He is so calming and they do everything to help us out. The situation is not an easy one, so again I am learning the art of patience and staying calm.

We tried mixing the pediasure with water, but that isn't working. We tried to give him 1 ml of Zofran every 8 hours since Sunday and that isn't working either. Although we found at at 3am last night from an on-call nurse, we should wait 30 min before giving him food. after administering the anti-nausea medicine. (Who knew . not in the directions. hmmm).   Today Bryce weighs 16.9 lbs.  We call the doctor nearly every day. We saw the doctors last week, this Monday and probably again tomorrow.  It's reassuring that he doesn't have a fever or ear infection (knock on wood) and overall he is such a happy easy going kid. He has had some stressful moments.
Its all a big guessing game and trial and error to see what works and what doesn't.

Words for me to meditate on tonight.
patience, kindness, love, giving, sharing, playing, laughing, acceptance, creating, planning, coloring,giving up on the cleaning and folding of laundry

Grateful List:
My sweet smiling baby who can put his cars on a ramp and make them go, throws a ball with me  gives mama kisses, can respond to bye bye, touches my hands when I say touch, and pushes his legs up when I say push.   I love our house; the garden, the back porch our skylights and all our spring flowers.  I love to watch bryce play with the flowers and explore their colors and textures. I love my husband for helping with the dishes tonight, running to the store, and giving Bryce a bath. 

Monday, March 18, 2013

Spring

 Here is a great quote by Amanda Bradley, "Celebrate the happiness that friends are always giving, make every day a holiday and celebrate just living!"

The beautiful yellow daffodils.  It seems as if a new light shines brightly this month- We love being in the garden. Bryce is a great helper - AND he is GORGEOUS!! look at these pictures. My son is so beautiful and always such a happy happy kid! I sure do count my blessings at night!! He is so clever and an absolute joy!!  He has two more new teeth - 6 in total- say cheese!!

He sings to me often. Ee Ii E I Oo.. Other new words are Ada ,  Da ,, and then he likes to play games with shouts - and we shout back. ahhh, ahh. he laughs.  I am happy that he has reached 17 lbs again.

He is such a cute fun kid!!! I am grateful to spend every day with him.
 

Bryce loves throwing his balls across the floor and seeing how far they can roll. We of course love to retrieve them for him. We are working on trying to throw in the bucket and knocking down things for even more laughs.


I feel that a cloud has lifted from my heart and mind and the days with my family are extremely joyous and precious.  There is sadness, at times when I just don't know about what the future holds, but we can go out more on walks, visit friends, etc and not be so worried about his next meal or that he can't play the same way with other children, and when someone advises us at the park - oh life gets easier when they start walking...we just smile back and say we love every min. of our life now.

Thank you Teresa, for visiting -Bryce is completely in love with Nicolette, and we just had the best time    ever!!          

There are times that are very challenging still for us, but we have grown and come along way.  We are so appreciative of our friends for such magnificent donations to our fundraiser last year and continuous support and generosity. We are feeling more and more like a family again - both getting breaks and learning to spend time by ourselves has been very helpful.                                                                                     
At the Zoo with Teresa
It's been almost 6 months since Bryce was diagnosed with SMA-1.  No one but our friends, neighbors, colleagues, and close family have ever been so kind and understanding - so supportive. To come to our house and cook a dinner - to listen on the phone, to encourage us, to cry with us, to laugh and play with us. Thank you!

We face an interesting journey. Along the way there will be bumps and turns and we will again need a shoulder to lean on - We know that you all are there for us -  You help us continue to stay strong and face each day with courage -
At the zoo with Uncle Shaun
Tonight Steve came home after meeting one of his 
former classmates from his MBA program. He coordinated with his work and others to provide us with more gifts - I can not tell you how helpful these are!! Thank you again everyone!! Thank you everyone at Providence for your generosity!