Monday, February 25, 2013

Recovering



Hope - these have been the words over the past few days. I heard the most inspirational story at a gathering of moms on Friday at St. Mathews.  I am grateful for this new group of mamas. So much kindness and support. We all have such beautiful families and precious angels who only bring us joy and love.

 Today is he day that we have been waiting for. Its not the most ideal situation to take. Its is most concerning  to take a child into the hospital for a surgery. One that requires venting a child (machines that breath for them during the placement of the feeding tube in the stomach)The difficult part is that this goes against all natural instincts of a mom. Why do we put a hole in my son's tummy? In the long run they say most children of SMA have a feeding tube eventually.   Bryce is very strong right now. He plays, laughs, moves his arms, legs etc.   We are glad that Bryce still takes 4 bottles a day and eats food too. We hope this trend continues for awhile. and again, I do have hope and I do believe in  my son.  I think this feeding tube will allow us to get the nutrition that he needs to grow stronger and we will hold on to that for as long as we can. Steve and I have to focus on the NOW. We don't really think too much about the future because while its good to be knowledgeable;our focus is on the present moment. The laughs, smiles. and coos.


 I find that either quiet meditation or listening to stories of other parents to be most soothing. There is not anything better than playing with my angel though. His the most absolute perfect little being ever. Bryce teaches us so much everyday with his smiles and good sense of humor.

We are so thankful to our friends who  really are so wonderful and supportive.

Thursday, February 21, 2013

The Beach

Spending time together is always a precious and joyful time.
"The greatest things in life are not things" -An excellent quote I saw this weekend.

This week  Bryce weighed in at 16.11 lbs. His new words are da...Eye Eye ... and he loves playing fill the box with toys and dump them out again. Peek a boo and "where's Bryce...Oh there you are" still prove to make him laugh. Our family time of dancing to "Happy Day" by Burning Spear is still so funny for him. He loves watching daddy play the drums. We are tying to embrace more music in our evenings. Shaking shakers, bouncing. He loves Raffi songs especially the bouncing up and down red wagon song. Bryce doesn't exactly pull his legs to his chest like he use to, but he will with help and encouragement. I work with his movements everyday. We went to the zoo again this week. He loved it. I do feel that Bryce is more exhausted when we go some place. Its good and bad; he is taking 2+ hour naps this week for the first time. I am sad though because I feel our play time is cut short- I have more time to make food for the family and catch up on the blog though.

Monday Feb. 26th, Bryce will be admitted for his g-tube placement. The surgery is expected to last a very short time, recovery a day and night in the ICU and then we come home.                                          
We hope the feeding will be better at home with this operation vs the numerous nose tubes that we have been putting in place as a temporary way of feeding you little one. Our goal is that the stress and consumption of our time with feeding him will be reduced a bit - though I am not convinced eating will not still be a challenge on our SMA journey. I like the idea of using a new amino acid diet, but I don't want obsess over his food - Hopefully, our angel can eat more of the same foods we do.













We look forward to getting back out and about right away. Off to another trip to Newport hopefully very soon.   More play dates and more zoo visits to see the baby elephant.

Friends are so helpful! How blessed we are.  We stay home most of the time avoiding getting sick. So far this year, we have been very lucky. I am the only one that ended up with pneumonia this year- primary due to my asthma. Life continues on, we can't live in a bubble, so we are very fortunate to those of you
who come and visit or reschedule play times when the kids are feeling better.                                                                                                                            Spring is nearly here!  Hopefully the end of flu and cold season. Tulips and daffidils are starting to bloom in the  garden. The ducks are walking across the street from the park to visit us. The chicks are starting to wobble about.  We will begin planting more flowers soon. Bryce is excited about being outside more these days. He loves watching the geese fly over the house. 


Mommy has started working again on Saturday mornings. So exciting for the young man to spend more time with daddy.

I can hardly believe he is almost 13 months. The months sure go by quickly. Our focus is on the "now" of life. While looking forward at other children and families of SMA we watch and sometimes fear what our future holds . However, at the same time we can not be too consumed with the unknowns.Talking to other parents with a child of SMA-1, does help us understand and cope with our choices, options, and have a network of other parents who are experiencing a similar lifestyle.

My days are mainly filled with getting Bryce to eat his food. Currently, he can eat and and swallow pureed foods. We try to thicken it with cereal. If he refuses, I have to syringe the food into his mouth throughout the day. He eats 8 times a day, roughly 3-4 times throughout the night, and 4-5 times during the day. This week he ate cheese for the first time as well as orange slices. There seemed to be some difficulty with hard foods so we are trying to make eating fun instead of a forced issue. We make food art and sometimes just simply smell and have a little taste.  He likes his sippy cup and these days we are so proud that he drinks from big boy glasses and small water bottles.