Saturday, January 26, 2013

Happy Birthday Angel. One Year

Today was a fantastic day.  Daddy was cooking in the kitchen this morning, mommy finished your cupcakes last night and made a fruit salad. Grandma got us many many balloons to celebrate your big day. She also brought over a wonderful craft table for the kids to do crafts on.

Thanks so much everyone for coming to our home giving us hugs and congratulating us. We met two wonderful new friends today - Emily and Lizzy. Thanks everyone. We look forward to seeing you again soon - My baby boy's first one was so great. thanks dad and Linda for spending the afternoon with us and helping clean up. Bryce loved uncle Shaun's present - the train that makes music and he just played and played with that all afternoon. We didn't expect presents at all, and what a beautiful thing it is to see Bryce light up with new toys, especially the books, blocks, puzzles, instruments all which really are perfect for his abilities. Thank you for thinking of our son today and giving him an amazing celebration.  The light up tank with pictures of dolphins floating by is really captivating for him as he loves to watch fish or other marine animals.

Dearest friends - you are our greatest strength and I am so very grateful for our friendship.

This is what life is for -smiles, joy, laughter.

What a terrific day. Thanks April for helping with the bubbles. The kids really had fun with those. Love to all.

I think this joyous day surrounded with friends has brought new wondrous energy into our home.  Bryce smiled and looked up at each and everyone one of you. He tasted the frosting on his cupcake and I think he knew - today is definitely not like other days.

Today, my sweet darling, you turned 1. What a celebration. HAPPY BIRTHDAY my little man.

Thanks Early Intervention for the wonderful table!!! Its more than ideal for Bry Bry. He can actually do his puzzles and play with his toys, trains, and use more skills than before.

Friday, January 25, 2013

Life with Spinal Muscular Atrophy

 A mother's first instinct is to feed her baby, but when he doesn't eat and refuses, its incredibly heartbreaking.

 Since the end of November Bryce's weight has been off the growth chart and doctors have been worried.The weekly weight checks have made me nervous, the  repetition of professionals' opinions of the terminal condition of my son's life is not useful; rather constructive ideas and suggestions would be much more supportive. Let's GO stem cell researchers - find a cure please.
 There are so many choices we have to make. Sometimes I feel its damned if I do, and damned if I don't. We are trying to learn to find more time for ourselves and each other, as every min. of every day  we have been focusing on this little man.  For now, its eating, its surviving, its celebrating as much as we can. We love to play.

I feel a bit relieved at the moment that he is now 16.12 and half oz. Thank you home nurses from coming to our house and being supportive!!!

We are grateful for the support we are getting from phone calls, to those stopping by, to our church people, to our neighbors etc. Its been hard for me to stay at home everyday for the past two months.
I gave Bryce my phone for a distraction last week but due to water damage,  I had to replace the phone; so sorry everyone who has tried to reach me. I didn't have time to figure out how to transfer my number over.

Its not always easy to do things the most effective way - do I even have an excuse - lack of sleep- constant worry - 24hour care - - when people ask my why don't I put him in the shopping cart/seat, or  about my feeding style when we eat in public -  do I just say thanks and smile or do I tell him about his rare diagnosis and make them cry.

I love how Bryce has two top teeth that finally came in, now he loves to eat and chomp on things; he loves his sippy cup. Wish he would take his bottle more though.

Thank you Steve for watching Bryce for an hour last week so I could go out. Thank you for letting me sleep in this morning.

Monday, January 7, 2013

Happy 2013! Almost 1 Year!

Happy New Year 2013!!
Last week Bryce weighed in at 16.1 lbs. He is 11.5 months old and we are looking forward to throwing him an amazing party on the 26th.

Thank you my sweet angel for eating more and for being such a cute and loving child. Everyday is such a precious day watching you grow and become stronger.

Our goal is to reach 17.5 by his first birthday. This weekend we did celebrate that he is back up after a few weeks of being down due to a severe ear infection. According the to the standard growth chart of weight gain and his age, he is still failing to thrive at 0% weight. If we can reach our goal, he will be in the 5%. For children with SMA, this is a good percentage.  We are hopeful and positive that we can do it; please however no more ear infections!!

Twice, before Christmas, the doctors wanted to hospitalize our baby, but as devoted parents, we felt that our 24.7 care at home would be more suitable for him than the hospital. We tried the NG tube for a day but the doctors did suggest that we take it out. Our nurse came to help us weigh him and gave us support. We ran tests at the doctors office to make sure he was alright, and after couple weeks  Bryce has finished his antibiotics and is eating again about 3-6 oz per meal. YEAH!

Knowing how much and how often a baby eats seems relatively easy. New parents catch on the the clues of the child (hands to mouth, a noise, a  cry) that say, "hey, I'm hungry." Feeding Bryce is not so easy - its a full time job -I don't know why he refuses food other than its painful due to acid reflux.  We do have our bad days, but most the time we can cope still with this and do play dates, go for walks, and I can be a mom. Other days, I am almost spending all day trying to get him to eat. We are more experienced now, shopping ahead, writing all his food down, counting each oz and calorie, making each type of food the highest amount of calories and fat possible. While we sometimes forget to get extra avocados at the store, or make 2 batches of hummus instead of one, puree the mashed potato at night or while he is sleeping to get ready for the next meal, we always have food on hand - sometimes its the banana and pumpking

Thanks to everyone- phone calls, support, love, donations!! Happy soon 1 year birthday little one.
Thank you Eyal for visiting with us for a long weekend. Thank you Bryce, for gaining weight.  Thank you all for your love and support. Thank you for following our blog  and sharing our stories with others.

Thank you all for your donations, kindness and your time. Thanks for play dates!!