Saturday, December 22, 2012

Happy Holidays! Fundraiser Thank You!!

Thank you so much McClaugherty and Hosford Family for this amazing breakfast for our son Bryce. There are no words to express our gratitude for reaching out to us. The warmth and love in our home this Christmas is filled with friendship. Your efforts coordinating this event has brought many together  throughout Oregon and across the states so we could pay medical bills and make modifications to our home life and his toys. We exceeded our goal and can't thank you enough.

Thank you so much!

Thanks to the help and including Early Intervention's, here is what Bryce can do with his new wheels. I had tears of joy today watching Bryce play with the magnets on the refrigerator for the first time.  He was able to be wheeled over to the Xmas tree and shrieked with excitement as he could touch the branches.  We walked around the house and I am so happy for him to have more independence.

Thank you everyone for giving us the best gift of all- love and friendship


Thank you especially to the McClaugherty's, Lisa, Chuck, Haily and Sawyer, Steve and Renee  as well as the  Hosford's, Kim, Frank, Bruce and Sharon, Jeremy, Gina, and the girls thank you all for you donations. Thank you for sponsoring Hailey. A huge thank you  to April and Rob Coomer, Orian and Jen Morrisey, Todd and Cher Bertges, Kara, Kenya, Katie, Bill and Carol North, Shaun Stuhldryer, Vince Kingston and Family, Lisa Adamson, Almiro A Dossontos. Batinah, Alicia McVicker, Kyle Millar, Rammon Turner, Tammy Schaber, Ramona O'Niel, Cara Pepper, Jeff Brandt, Ann Wales, Jan Nami and Carrie and Jason Tillotson, Kathy and Richard Oathes, Elaine Kallis, Trish  Narimatsu, Kathleen, Eyal and Steph Amiel, Regina and Jim, 

Last week Bryce made it up to 16.5 lbs and this week back to 15.12. So he lost weight for the first time ever and its very sad. We were so happy with his weight gain. Thisis very stressful for us as a family but we have to just focus on the positive and think about everyone who is supporting and praying for us. This gets us through these challenging days and or weeks. I hope this next week will be better. We were back at the hospital this morning and put back int he NG tube. I spent 2 hours at the doctors office on Friday trying to find the best care plan for Bryce. I had thought if he lost weight they would simply admit him and he would have an emergency gtube placement. Apparently its not that simple or as easy as the doctors at Shriners had told us.  Its still considered elective surgery.  We are at the whim of the doctors to get us in for consults of the placement and have tried many times to see them but they have rescheduled us several times. We feel the universe is telling us again and again that Bryce can fight and he can do it. We just have to be patient, pray, meditate and try to get the little man to eat more on his own. Last week he had the most weight gain ever. 6 oz. We look forward to family and friends to visit us because they really help us cheer up, stay positive and help get Bryce to eat. We sing lots of eating songs.






video

What an angel. He falls right asleep in our arms.


Tuesday, December 11, 2012

Winter Play!!!

 We settled back in to our routine after being at the hospital. They could not complete the feeding tube placement and have suggested to have a surgical team place it instead at a later date.  Until then we are playing and eating these days Bryce is back to his pre-surgery weight of 15.11 and is now 29 inches long.



Getting out during these colder days feels good. Just a walk around the neighborhood or to chat with friends. It is motivating to watch Bryce hang out with other children his age or so. I am motivated with the help of friends and professions to learn to take time for myself, to use correct movements throughout the day and proper equipment.

"Thanks Teresa for my winter snuggi" Bry Bry

Grandma Carmela's wonderful visit was filled with so many memories. We laughed, played, ate, sang songs, and baked good food. Her timing again was a sign from the universe - a time to regroup and reflect as a family, adjust to feeding schedules and  ng feeding tubes and reflect on our life as we move forward.











We love to eat pumpkin pie filling with pudding. Avocados and hummus are next in line and great for extra calories.  Trying to reach 18 lbs by his first birthday, Jan. 26th.

 Our eating and watching for breathing complications on the whole are the greatest challenges. I was very happy to go to Ikea and find toys and adaptive materials for the house to accomodate his learning at 10 months. 
Early Intervention is helping us so much with books, resources, support, how to move and play daily Most recently we are looking at new bathing techniques.
We are very appreciative of the help from so many great programs. Beyond the Clinic, for example is a great company who also is here to support us, help us with becoming even more educated on body movement, joints, and what is callled range of motion with the arms and legs. They are definately a great fit for our team  of doctors and with EI. 
 


What a special moment. Thanks Carmela for coming to stay with us. We will miss you but look forward to our next visit.












Stay tuned. This weekend I'll post our amazing details about our fundraiser on the 8th.

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.

Saturday, October 27, 2012

Autumn Greetngs

Of course Bryce loves his little pumpkin gifts. Thanks Martha!
Happy Autumn everyone!.



We are very fortunate for everyone all for the support over the past month especially. It is easier to cope now that we have an expert team of doctors. The future is unknown, yet we remain hopeful. It is not easy to always be cheery and some days are and will be harder than others, so having friends and family to lean on is a tremendous gift. Thank you to all!!