Saturday, December 22, 2012

Happy Holidays! Fundraiser Thank You!!

Thank you so much McClaugherty and Hosford Family for this amazing breakfast for our son Bryce. There are no words to express our gratitude for reaching out to us. The warmth and love in our home this Christmas is filled with friendship. Your efforts coordinating this event has brought many together  throughout Oregon and across the states so we could pay medical bills and make modifications to our home life and his toys. We exceeded our goal and can't thank you enough.

Thank you so much!

Thanks to the help and including Early Intervention's, here is what Bryce can do with his new wheels. I had tears of joy today watching Bryce play with the magnets on the refrigerator for the first time.  He was able to be wheeled over to the Xmas tree and shrieked with excitement as he could touch the branches.  We walked around the house and I am so happy for him to have more independence.

Thank you everyone for giving us the best gift of all- love and friendship

Thank you especially to the McClaugherty's, Lisa, Chuck, Haily and Sawyer, Steve and Renee  as well as the  Hosford's, Kim, Frank, Bruce and Sharon, Jeremy, Gina, and the girls thank you all for you donations. Thank you for sponsoring Hailey. A huge thank you  to April and Rob Coomer, Orian and Jen Morrisey, Todd and Cher Bertges, Kara, Kenya, Katie, Bill and Carol North, Shaun Stuhldryer, Vince Kingston and Family, Lisa Adamson, Almiro A Dossontos. Batinah, Alicia McVicker, Kyle Millar, Rammon Turner, Tammy Schaber, Ramona O'Niel, Cara Pepper, Jeff Brandt, Ann Wales, Jan Nami and Carrie and Jason Tillotson, Kathy and Richard Oathes, Elaine Kallis, Trish  Narimatsu, Kathleen, Eyal and Steph Amiel, Regina and Jim, 

Last week Bryce made it up to 16.5 lbs and this week back to 15.12. So he lost weight for the first time ever and its very sad. We were so happy with his weight gain. Thisis very stressful for us as a family but we have to just focus on the positive and think about everyone who is supporting and praying for us. This gets us through these challenging days and or weeks. I hope this next week will be better. We were back at the hospital this morning and put back int he NG tube. I spent 2 hours at the doctors office on Friday trying to find the best care plan for Bryce. I had thought if he lost weight they would simply admit him and he would have an emergency gtube placement. Apparently its not that simple or as easy as the doctors at Shriners had told us.  Its still considered elective surgery.  We are at the whim of the doctors to get us in for consults of the placement and have tried many times to see them but they have rescheduled us several times. We feel the universe is telling us again and again that Bryce can fight and he can do it. We just have to be patient, pray, meditate and try to get the little man to eat more on his own. Last week he had the most weight gain ever. 6 oz. We look forward to family and friends to visit us because they really help us cheer up, stay positive and help get Bryce to eat. We sing lots of eating songs.

What an angel. He falls right asleep in our arms.

Tuesday, December 11, 2012

Winter Play!!!

 We settled back in to our routine after being at the hospital. They could not complete the feeding tube placement and have suggested to have a surgical team place it instead at a later date.  Until then we are playing and eating these days Bryce is back to his pre-surgery weight of 15.11 and is now 29 inches long.

Getting out during these colder days feels good. Just a walk around the neighborhood or to chat with friends. It is motivating to watch Bryce hang out with other children his age or so. I am motivated with the help of friends and professions to learn to take time for myself, to use correct movements throughout the day and proper equipment.

"Thanks Teresa for my winter snuggi" Bry Bry

Grandma Carmela's wonderful visit was filled with so many memories. We laughed, played, ate, sang songs, and baked good food. Her timing again was a sign from the universe - a time to regroup and reflect as a family, adjust to feeding schedules and  ng feeding tubes and reflect on our life as we move forward.

We love to eat pumpkin pie filling with pudding. Avocados and hummus are next in line and great for extra calories.  Trying to reach 18 lbs by his first birthday, Jan. 26th.

 Our eating and watching for breathing complications on the whole are the greatest challenges. I was very happy to go to Ikea and find toys and adaptive materials for the house to accomodate his learning at 10 months. 
Early Intervention is helping us so much with books, resources, support, how to move and play daily Most recently we are looking at new bathing techniques.
We are very appreciative of the help from so many great programs. Beyond the Clinic, for example is a great company who also is here to support us, help us with becoming even more educated on body movement, joints, and what is callled range of motion with the arms and legs. They are definately a great fit for our team  of doctors and with EI. 

What a special moment. Thanks Carmela for coming to stay with us. We will miss you but look forward to our next visit.

Stay tuned. This weekend I'll post our amazing details about our fundraiser on the 8th.