Sunday, May 26, 2013

Daily Life with Bryce -

Hope is the greatest. I will never give up hope.

Fun first ride at Fred Meyer.
Thank you FSMA for sending
us the next chair!!
Many say this devastating disease takes a massive toll  on families. Through months of advocacy,  assistance, support, and new friendships and communities have been established.  - Spinal Muscular Atrophy (SMA)  changes a mom for the better, we have to change or we could not cope - we have to stay positive, look forward, forgive the past, and continue to adapt to the changes of a child's abilities.   The first worries of motherhood  seemed like big issues in life, however, they were really are just tiny things compared to now - but I can't change the past - I have become a stronger person now - and I am moving forward in life to cherish every moment with Bryce.

I  joined MOPS - an  mothers group in March - a fantastic group of mothers and mentoring mothers who help each other, give perspective,  share stories, and recently have been helping with meals as we struggle with feeding Bryce and now they are coordinating respite care for me.

 This week he averages  18 lbs. Our goal is 20 lbs by his 18th birthday.

 Everyday I look at my son and think- what a blessing, what an angel!!  .  Children are miracles -   Family is the most important thing in  life - it is something so precious and so beautiful. We miss daddy right now very much.

I agree with an SMA mom regarding the fact that Bryce  needs to use the g-tube for nutrition and seems to only plays with food and bottles. Last night, however, he drank 3 oz of his bottle  by mouth. Way to go little one.

 It appears, as others have said "two things are probably going on with feeds. He is probably feeling himself at risk or has had chokes while eating so he's losing his desire because it's scary. It is also probably physically really hard for him. This in turn means he's probably not getting enough calories which makes him tired and have less energy to eat orally. It's a vicious cycle"  Therefore, I have to make eating fun again.
sweet potatoes for baby puree
I spend my days  creating his world for him as he can't get around by himself. I make ramps and adapt games with cardboard and duck tape. Its fun making food, doing baby massage, exercises, going for walks, singing songs, playing games, riding around the house in his chair -

Eating, listening to Raffi and looking
at gorgeous flowers Daddy
brought home last Tuesday.
There is no place like home - Steve and I have provided such a great place for Bryce, its a comfortable quite home with so much room to play with gorgeous gardens. Bry Bry and I love having our new friends over.

It is amazing and joyful to see children play so sweetly. 

I wish I had these moms and mentor moms in my life sooner from MOPS and had the home nursing months earlier.  - sometimes I feel  too little too late. I hope not - we miss family time immensely. Finally, I am getting rest, learning the skills and knowledge of parenthood, finding time to relax, starting to enjoy life again, and have peace. 
FSMA sent us a wagon as well to help him
and us explore the world in new ways

 My confidence is growing day by day on how to use the g-tube - mostly trial and error - self taught, neither Steve or I were trained. Its great though the home nurses are starting to help us, and Early Intervention steps up to fill in these gaps and loans me books on tube feeding etc. Other times during week and on a monthly basis, I am scheduling appointments with Shriners, our Pediatrician, nurses, counseling, and then I track and order medical supplies  monthly weekly and monthly is also part of my life.  Its been a good break these days when daddy takes care of Bryce and I can go out on my own.

When he has a cough and mucus build up I have to use the cough machine and BBG twice a day.  I use both pretty often though to attempt to keep him mucus free.

My new schedule though now during nap time, that will be my time to catch up on sleep and exercise.

 Some great advice I received, week is - "you've got to let it roll off your shoulders and move on."  In February I came out of the fog of sadness and really am finding my waynow - however, still living on 2-6 hours of interrupted sleep makes life  difficult and does cause me to stress out of the tiniest, stupidest things. The overall consensus, .that I am doing a great job - I am an awesome mom.  

Thanks to everyone, meditation, and exercise I can  be more relaxed and able to handle what the days bring. The only way to accommodate this lifestyle is to change, love and forgive, keep moving forward and STAY POSITIVE .
 This reminds me of some favorite lines of a son from my favorite movie "Beaches" - You've got to laugh a little, cry a little, and have the blues a little, that's the story of, that's the glory of love"

1 comment:

  1. You ARE an awesome mom!! You have so much love inside you, Jenni, and i know this has all been unbelievably difficult for you, but you are tackling these hurdles like the champion you are. I love you, hang in there.