Saturday, September 29, 2012

Celebrating Life - Day by Day

My motto this week has been  "HOPE. A friend gave me great advice, "sadness must not prevail in my heart,  I must stay strong."  My goal this week is to learn to live each day entirely for what it is and to stay strong not just for my son and husband but for me as well. Right now, its too overwhelming to be nothing but hopeful. We will hope, pray, and enjoy our little miracle for as long as possible.

Yesterday, our neurologist at Shriner's Children's Hospital  said Bryce is strong for his condition: he touches his toes,  bear more weight on his legs, and is moving his head side to side on his tummy. His tongue movements are also normal at this time and he can still brings his hands to his center and hit two toys together. These are all good  fine motor skill development.

We are so thankful to all of our families and friends for support. The beginning of this journey is learning to understand and accept the diagnosis of SMA type 1.  We are very appreciative and grateful for all the gifts, food, the visits, the kind ears listening to our stories. Bry Bry is at home with us. He is a fighter; he is doing well and is extremely amazing and happy. We have come to terms to acknowledge all of his greatness as well as the areas of his body that the muscular atrophy has begun. The cough assist machine arrives this week and we will wait and see how this helps him. We hope he recovers from his cold soon and that his lungs still continue to develop for some time, and that he continues to eat more food and gain weight on his new diet before we consider the feeding tube as the next step.

We now know this can be short or long term and we must continue to live our life to the fullest - go to the zoo, play games, and be the best parents we can be. Bryce is so brilliant that he is learning to point to eyes and noses; he just can't sit up by himself or hold his neck up for so long. He easily tires after an outing but  never complains. He just enjoys everything that life presents.
My tears are becoming happier tears because I now have hope. This is partially due to the fact that Steve and I no longer feel  alone, we have so much love from people.  We have met a team of specialists at Shriners, and families of SMA have also reached out to help and provide resources to guide us through the next stages.  Early intervention has been a saving grace; first and foremost they have been inspiring and are rebuilding my confidence as a mom.  They have been coming into our home and assisting me with learning new physical therapy movements, eating positions, and documenting  Bryce's  progress.  My developmental pediatrician is an amazing specialist who I respect very much for not only helping us navigate through the medical field but also reaching out to us on a personal level especially during this adjustment period. 

We are completely exhausted, but we are going strong and learning everyday new ways to take care of our son.



Thank you so very much to everyone who has helped us during these days especially.  

We need all the support we can get right now. Families of SMA sent us a packet and we will be setting up a way to raise funds for the care of Bryce.

 Much Love  Jenni and Steve

 


Wednesday, September 26, 2012

Happy 8th Month Birthday Baby Boy

Over the past few days, we have had some much fun. We have been visiting with friends and having so much support and gifts brought to our home.  We are every so grateful for the loving support and kindness. Thank you. Here is a poem for my son on his 8th month birthday! And a video!

Eyes of brown,
The brightest eyes I've ever seen
we play, we sing, we laugh
Every day, so wild, so free, and oh so keen
A smile that shows from ear to ear
kisses from time to time
Never hinting of pain or fear
Touching our hearts and bringing us love
A feeling we've never known
surely you are a miracle from above
Who would have known, what news was brought to us today
It doesn’t matter; we are with you every step of the way
You are our sweet little angel, forever, and always –
We will fight SMA
video
 



Saturday, September 22, 2012

Living with SMA

Our precious beautiful boy has been diagnosed with a rare genetic disorder called spinal muscular atrophy. Who has ever heard of SMA? and what is type 1? It is probably the worst news a parent can get.

For months I have been asking my pediatrician, why does he breath like this? Why is he coughing like this? You keep saying its acid reflux but I don't think so? Why is he waking up so much at night? Why is my baby not eating well?  Pediatricians, dietitians, and specialist thought, oh, classic reflux baby... I was told over and over again, its ok, you are a new mama, he's going to be fine.  My little baby is not fine, but we are going to be with him every little step of the way.

Now I know why when he has a cold, the fluid in his nose is sometimes too much for him. His little coughs are so weak because he doesn't have the muscle ability to cough hard like other kids. A cold for us had been weeks and weeks of little noses, pats on the back and saying its ok.  This time, its not as easy to say, its ok, but with confidence and love, I  hold him up and pat his back and try to help his little muscles cough out what he can. 

Everyday with Bryce is a gift. His smile, coos, his hand reaching out into mine, his hands touching my face, or my nose. He loves to play with my hair. Though I struggle with feeding him at times I have to take a deep breath and  say, is he gaining just a bit more overall  and then thank him for being a great little angel and being so perfect in every way. 

I am struggling to not be angry at our first pediatrician. At 2, 3, and 4 months old, she would say, all babies develop differently. Really? He can't lift his little head and my feeling is that this is not right. Finally, one doctor, Dr. Quiles, listened to me and started sending us to specialists. I counted down the days and weeks to get in. At our first office visit, we were rushed to Randal's Children's Hospital. It was here where we met the neurologist and others. A very emotional, shocking, unbelievably difficult experience at the hospital with often harsh questions and little explanation. Even with 12 doctors pocking and prodding, my little one still hung in there like a trooper, his big brown eyes looking at me, why are we here mamma, papa? What's going on? The day to day life had not changed for any of us, these physical things have been part of our life for months and we were never rushed to the hospital before. Why is my mama crying?

Again, we left with no answers. Only more questions and concerns about our traumatic days at the hospital. We went home and said, there is no way this prognosis could be true. There must be another reason. We continued to go in and out of doctors offices for another week. On Thursday, September 20th, we met with the specialist and were told that children, our son, with SMA 1 don't live past their 2nd birthday and that is with the help of respirators and feeding tubes.  His muscles at some point will no longer progress  and they will degenerate. There is evidence that his lungs and all the other little muscles required for eating are already starting to weaken.

There is no way to explain how heartbroken we are and the tears just can't be stopped.  We never stopped looking at the world differently when Bryce was born, we are now just looking at the little things each day and  honoring and cherishing this little man for who he is and what he can do. I try stay strong and keep him laughing. I cry at night and hopefully at times when he can't see me. He doesn't know quite yet what is going on, so for him each day is a new day with curiosity, adventure, and laughter. I am grateful for the time we have now. "Live each day to the fullest," I believe someone said. "Never have regrets," "There is no time like the present."

We still play so many games and sing lots of songs. He still falls asleep to what my daddy sung to me when I was little, John Denver's classic, "Country Roads." Of course other songs like "Its a Wonderful World," and "Stand By Me" help soothe all of us to sleep.