Tuesday, November 27, 2012

These are a few of my favorite things: Blessings to All

Bryce is now 10 months old, 28 inches in length and 15.11 lbs - a happy sweet lovable guy
                                                                            As with life, our favorite things and favorite people make life even more enjoyable. It's the little things and little moments that are so precious. Each day with Bryce, I feel blessed to learn so much from him. We are so appreciative to all of you who have given us so much.  With  leaving my job for the time being, we couldn't have gotten through the past months without you. Your prayers and other gifts have really helped us out.

There are not enough words to express our gratitude for the fantastic four couples who gifted us a cleaning service . The past few months have been more than what we could almost bear as parents dealing with the diagnosis. On top of that, Bryce has not been a great eater. Instead of cleaning so much, I have been able to focus on cooking and preparing more foods for the little guy. Most importantly I have been able to play with him more and do physical therapy everyday and work on activites to keep him moving and enjoy a few of our favorite things each day.


We love our cousins! I feel blessed to have my brother live so close and his boys are extremely kind to their little cousin.
                                                                                                             I am so thankful to Steve's cohort for the infant carrier that we were given. Still now, since Bryce has severe acid reflux, trouble sleeping,  I am almost always holding him, and rocking him,  putting him in my pouch has been a blessing. He loves snuggling with mommy.   Recently they collectively raised funds for us via amazing gifts, gift cards, and an ourpouting of love and prayers.

 The most favorite part of our day is music and playtime. We exercise, sing songs, do rhythm games, clap, beat on drums, and dance dance dance. He loves to hold drum sticks and try to hit them together or make noise with them.  My mom taught my brother and I so many songs growing up that for me singing is just part of our life as a family. Daddy is brilliant too with his songs and clever use of youtube (drum solos, music videos etc). Bryce loves Shake Shake Groove performed by Hylands shake shake babies.

grandma Elaine doing floor time with the young man
For support and to practice keeping his neck muscles strong, Bry Bry likes to hang out in his high chair in the kitchen with me and watch as I prepare his avocados, hummus, chicken, etc.  He really likes it when I hold him and I eat my sandwich. He stares as I eat a bite and chew. Then he will try to eat  what I eat as I offer him bites. This is one of our favorite games.

Daily we do massage to his legs and arms with the lovely Aveda baby lotion. The lavender one is the best after a bath. Boy oh boy, do we like bath time. This is his most enjoyable time every other day because he really does move more in the water and gets those legs moving. As I hold him in sitting position with my legs supporting his bum, he really will hold his neck up nice and strong.  He likes his blue bathtub too, this gives him a nice chance to lean back, relax, and play with his little lion and other animals.

Another activity we like is throwing the ball. Bryce is very good at sitting in his purple chair and tossing the ball to mama or dadda.  He has his style, but boy is it exciting watching that ball roll. We kinda encourage any throwing, food, balls, toys because its fun to see where it lands and then say, "where's the ball?" "Where did it go?"  "Oh, there it is." 

 

We couldn't have gotten through the past months without our community of friends and our terrific family!


The dinners brought to our home, the Costco food deliveries, and the gift cards has helped us tremendously. We have had a significant amount of medical costs that were out of pocket recently for Bryce and we will face more budgeting issues as we try to find physical therapy and special needs equipment for our son in the near future. For now, because of these gifts, and some fundraising we hope to do on December 8th, we are able to get the holidays and cherish each day as a family.


Prayer Shawls - made for us with love and prayers
Everyone stopping in to visit has not only cheered us up, but it has rebuilt some of my confidence. I am more relaxed about living our life and going out. We have been able to borrow my brother's Bob for Bryce to have more support on his back and less bumpiness - and this has allowed us to go walking again and more often. Also, this stroller gives my back a rest when we are shopping or just out. Bryce can't sit in the shopping carts so, so sitting in the Bob gives him a great view of the world while mommy can get a few things at the store.

My mom generously has provided us with many suitable toys including both lightweight toys and heavier ones to help build his hand and arm strength.(balls, legos, trains, marimbas) Bryce does sit up a bit better with my support when he can look at new things or be entertained with the Baby Einstein videos, a puppet show, or just funny mommy dancing about.

Without a doubt, my mother is all heart -  she has given us her old SUV. This helps us feel safer and haul our young man's equipment around. This is a tremendous gift.

Newest Favorite:  I went to the MJCC and met other moms and enjoyed a wonderful indoor playground. Bryce smiled and cooed at all the little kids. The kindness and welcoming of this community is amazing. We look forward to many more playtimes.

 




Thanks everyone for following our blog and for helping us out. We feel very fortunate and truly blessed to have such a community of love.


Weds, November 28th bryce has his first surgery. Today our awesome neighbor came over and gave us two beautiful prayer shawls as seen in the picture.  As we prepare for the hospital tomorrow, what a beautiful gift blessing - these shawls where created with love and prayers from the Prayer Shawl Guild at St. Matthew Luthern Church -
 
video
 
 

Saturday, November 24, 2012

Happy Thanksgiving

A Day at the Park

A great big THANKS to family and friends!! There is no greater gift in this world than friendship!

                                                                                                                                                                       Thank you my dearest little boy especially for  all your sweet smiles. How great it is watching you make daddy laugh; thanks for laughing at my  jokes too. I know you love it when I sing songs and dance around. I love hearing you shout with excitement and joy. Mamma and dadda, and so many new phrases. You are such a joy Bryce. LOVE YOU LOVE YOU

This upcoming Weds is our big day for Bryce's first surgury. He will get a feeding tube placed in his tummy (gtube) and if all goes well; he will be able to gain weight better. He won't have too many complications with eating real food again since he won't have to have anymore ngtubes.  He had a tasting of the cranberries and potatoes this year!  Keep on eating buddy.



Bryce weighed in at 15.11 lbs recently. After his surgury this Wed we hope to meet the goal of 19 lbs by his first birthday in January. It is scary as parents to go through this procedure, but we know statistically it will be successful and provide a way for Bryce to get the nutrition and fats that he needs to grow and develop properly.

Bryce is always so happy ! As is mommy because he is so much fun and such an angel.

      
      


Tuesday, November 13, 2012

Today and Tomorrow

Look at my gorgeous child tonight as he reads, "That's not my elephant," with daddy. He is the most clever boy I have ever known.  His mind is so strong. What curiosity. What joy in turning the pages and feeling the differences on each page.

As I try to fall back asleep, thoughts escape me and I find it difficult to let go of the worries of the day. At least he ate more today than yesterday. Why does he only drink 2-3 oz of formula at a time? We don't mind getting up 3 -4 times a night as he is hungry, we have grown use the the feedings every 2-3 hours.   Did I put enough butter and salt into his sweet potatoes today? Why didn't he eat his favorite avocado dish as he did weeks prior? With help from the experts, am I pumping enough to get my mama milk back-  Will the ng or gtube really be effective? There are no answers to my questions.

Tomorrow is another day. Grandpa is visiting us again. That smile will light up the room. His laugh will melt my heart. We will play games, laugh, and explore. We will enjoy our nummies as best as we can.

Thursday, November 8, 2012

A Day at the Zoo: living life

Can you see Mr. Lion in the background from our visit to the zoo
Bryce gained more weight!!! He is 15.99. He does not have to go back to the hospital this weekend for an ngtube as we has thought. Way to go little man.



Our trip to the zoo was amazing! What fun with sweet wonderful friends. Love the lions!! Gibbons!! Cheetahs and penguins!!!
We are very happy to be around friends. Thanks everyone for your time and for skyping.

We are really focusing on increasing Bryce's weight. He is still at 1% weight. Given that our pediatricians told us he was just fine until August and at 3%, he was doing good, we are optimistic with more help we can get his weight back up soon. 

Our new pediatrician is great; we feel that he is really looking out for Bryce. We had no problem with the ng tube last week and he gained 5 oz.. It's going back in soon until we can figure out when we can get his RSV vaccination, then so we can make a plan for his future g-tube.
Its been a challenging 4 weeks with exploring the medical world and figuring out  who will make the best medical team here in Portland.  Shriners has been great, but they operate separately from other medical facilities. It is my suggestion to all mothers to always get copies of your records especially the growth chart. There is a serious disconnect in our system with getting records to doctors. Have doctors write down the care plan for any child with a complex condition, so that the resposobility then continues to fall on the providers to communicate with each other before possibly giving information about our son that could potentially put his health /life at risk. This is why second opinions are so crucial.

We are learning to become more assertive. It was shocking how many professionals have acted like kids in a candy store with our son's diagnosis. The  Doernbechers pulmonology and  feeding clinic were so excited that they just didn't review any of our records nor were willing to go over the one's I brought . I couldn't believe the pulmonologists prescribed a cough machine for us but never told us how often to use it or when. They only discussed feeding issues and after appointment when I tried to ask about the machine or other respiratory issues, they said they wouldn't help me unless I get a g-tube first.  Mothers are given a natural instinct for a reason and when a rx or an appointment feels wrong, a mom must get another opinion. The sad truth is that perhaps teaching students may be more important than caring for patients.



Bryce's new feeder seat from FSMA
We found that when doctors fail to look at the entire picture, talk to the mother respectively, read the records from all our providers, they  neglect proper care and potentially endanger the lives of others; in our case, our baby boy.

As I move forward, I appreciate our excellent team that we have found. I am expecially grateful for the Washington County Nurse who comes to our home to weigh Bryce and help us understand complicated information. I am most thankful for Early Intervention and their work with us and for carefully documenting not only his progress dating back to August but also our attempts to find care.

While I end this blog post for tonight, I feel much better. I know our new team now consists of some great folks.  My meditations and prayers to be more patient is working.  Touching base and talking to other moms with children of SMA has been a blessing and very therapeutic. Having a village of love around us makes my heart warm and keeps us believing in love, life, and hope. Never stop living is our new family motto!!  Love and peace to all.