Sunday, September 7, 2014

Summer Fun

The summer has flown by. Bryce is so angelic and really becoming quite the little man with all his talking.

He is such a joy. Friends and family have made this an unforgettable summer. Time at the farm in Canby with Grandma, going to the fair - his first ever to see tractors and animals and he met my 6th grade teacher Mrs. Huggins. Great to see friends from my childhood and introduce them to Bryce.

Bob the Builder is our favorite theme. We play with plastic hammer/wrench etc and hammer nails into a shoe box. Many moments of fun.  Thomas and friends - love the videos, and trains - learning names and watching them zoom around the track. Weee. We love grandma's train books and reading the encyclopedia of Thomas and friends.  Must note Fireman Sam. Loving it! Thanks Avril.

Cars - all our cars have eyes now - a little white out and a marker - the little race cars just go go go and like the movie, we love to read and talk about all the names and watch them zoom

Puzzles galore. We do about 5 puzzles a day sometimes. And reading fun this summer through the Wilsonville Library reading program. What fun that has been. 20 min a day min.

. Bryce likes to count - he can count to 11. 

He loves to interact, throw balls, and play hide the bear or throw bear up to the ceiling. Of course, he chooses if bear goes up, does summersaults and or if bear hides.

He loves his cousins, uncle, aunties, grandma, his nona and friends. Thank you everyone for you love, support, and friendship.
 
Blessed are we to have such great friends and family



 

Wednesday, September 3, 2014

Bryce

Cute little bryce. He sure is an angel.
We are starting our unit on fire fighters. Still doing bob the builder. Bryce loves the tools grandma got..plastic hammer and nails. We put them in boxes and creatively make houses and lightweight paper guys and workers.
Bryce saying two three word sentences. And loves the word wheeee when he sees his trains Thomas trains go in circles.
He can now play abc game where he doea both upper and lower case leters...he and I come up with fun words for each letter like "b" bob,  baby, bryce, Brittany.

Monday, July 21, 2014

Bryce is Home

Bryce is getting back to his routine. We are working towards keeping him happy and strong with maintaining home care -  I have started a new fundraiser to help get needed equipment and pay medical bills. I have titled it "Saving Bryce: His Fight against SMA-1.

http://www.gofundme.com/caringforbryceequipment

Thanks especially to my brother for his time and support and visit to the hospital as well as my mother, our friends, and neighbors.

I love you sweet Bryce. So happy you got through this illness are on your way to a recovery.
The timing is nice too because August is SMA Awareness month.

Thursday, July 10, 2014

Monday, June 23, 2014

Strength

"You never know how strong you are until strength is the only choice you have" author unknown

Bryce shines like a light so strong, I almost feel like he and I are one light together that shines with the strength that love, faith, and the support of our friends and family provides to us. 

My prayers are with my son because I don't know if he will pull through this one. Arrived at hospital a week ago and still needing oxygen bipap 24 hours ..sometimes rescue o2 at night.

Sunday, June 8, 2014

Interview from November

This is one of the most wonderful interviews for Bryce and I. Thanks to our dear friend Kevin, last November he published on his link to our local news station.  We started our GoFundMe account then. My hope is that our story is shared by as many people as possible.
 
We have since April had significant challenges- still trying to seek the court system to have 2500 worth of equipment that I purchased last fall to either be billed to an insurance company so I can use that documentation to get a grant if they decline to pay. Or, per the divorce decree, it is my hope that his father will pay the 65% of medical costs since that time. Costs continue to rise for us- my income has become diminished due to a recent work injury, legal costs, nursing care, and other unexpected out of pocket expenses.
 
It is my goal to resume my studies as a respiratory therapist, continue to substitute at the university, and continue to fundraise and do follow up news stories.
 
Love and Peace
Jenni
 
 

Tuesday, April 8, 2014

26 months

We are settling into enjoying our new home and community. Among many appointments we still are searching for ways to ensure that Bryce and I can have access to the same medical supplies as his father with his father's insurance.

I am hoping to re-launch my go fund me page. My goal is to raise 1900 to pay for medical equipment that I still owe. Anyother money beyond that will help with auto maintence, diapers, and therapy equipment, and material for toy modification/ activities.

Bryce is talking so much more - Despite his new diagnosis of mild hearing loss in one ear, and no hearing in the other, it is my hope some tubes, a 5 min procedure will help repair the ear canal, get rid of the fluid and allow Bryce to regain hearing in that ear. With my TPR and other adapted language techniques 4 days a week, we have made impressive progress; among his complete and total amazing love of life and happy joyful self. 

Among Bryce's new words such as "nona", he can say slide, (at the park) rope, backpack, map, bottle, baby, doctor, nurse, seriously, tractor, truck, up, down, go, more, stop and Monday he said "doctor furr", he also is saying more 2 word phrases such as go mama, more please, baby bottle

In march we listed 50 words, this week we are up to 70 already.

Love jenni

Wednesday, March 19, 2014

sweetest photos ever!!


A lunch at Wilsonville Park!!

Just love our new community.

What a happy Boy!














Bryce in having fun while elevating his feet. Swelling has become a new concern, (also a  sprain from a nurse putting on a small shoe in his father's home ) but with proper care and communication we can help him overcome this,  prevent injuries and pain.
 
Here's our  new game - Catch the ball mama!!  Bryce is talking and playing so well. We love the warmer weather as we can get outside more.  Check out the video; I learned to take apart the remote of this remote control 4wheeler, put ceramic on around the control panel - once hardened, he can now easily drive his car. SOOO COOOL!    I think I should start a business of adapting toys.
 

Wednesday, March 5, 2014

Bryce's Driving

Counting our blessings.

We have settled into our new home now.

Despite continuous challenges of equipment being shared  - Bryce and I have been consulting and meeting with all providers and working very well with his team at Shriners. 



Our friends and family are every so supportive - I am finally starting to get some thank you cards out. My mom has been really great at not just playing activities but such a good grandma learning 'grandma roles-tube feeding, supporting positions, leg exercises- Way to Go Grandma!!!"

When I take a step back, its amazing how much I have learned to care for Bryce - using gtube, feeding pump at night, bipap at night and naps, venting to get air out of tummy, positioning, PT, OT, and all the various speech activities including stick out your tongue go back and forth like mommy, say .... and he repeats.  The suction machine and cough 2-3 times a day is a normal activity - His diet - that is something still in negotiation - AA diet is really the best for him,lots of carbs, fruits and veggies. I puree avocodos, sweet potatots, makes soups and his favorite of course mac and cheese with chicken pureed. He loves this soup (his new word are hot- he won't eat soup cold) hee hee

Play date with Emily



video
Bryce is such a joy and the greatest little man ever..

Look at this!! I feel so fortunate and blessed. I taught him "go" and now he realized that if he moves the control fwd , back, rt or lft he will make  himself "go"

Shriner's Children's hospital is simply amazing. The whole team up there is just wonderful. We began to have Bryce followed by this team of Neurologists, Dieticians, PT, OT, since October of 2012.
 
Here's a video of new words "Nona"
 Little mister mister keeps surprising all of us with his new skills and such great attitude - such joy!!








Saturday, February 15, 2014

Happy Snow Days!!


I love the snow and so does Bryce!! It feels wonderful to be outside and enjoy such a splendid part of life.  Bryce loved his ride on the sled he goes "ho ho ho " mama go!  I have learned so much from Bryce, he is very smart and clever for a 2 year old.
 
I love the snow, though I moved the first 3 day of the storm, it was fun and from living in Montana for 4 years, this snow storm was simply most welcoming and refreshing. We have been in a deficit here in Oregon with rain and snow this year. 
 
With his new communication and voice its a whole new world for us.
 
See below - lesson on ABC - video 2, he is much more confident in talking and pronouncing sounds.
Next, we are combining two sounds - this week he learned Papa which means daddy, and dada means many things, like what's that, da is his "that" so we are working on dat - "that"  what's that mama"
 
-

 This week Bryce signs baby a lot more. He says mama more, computer, vroom vroom for car play and tractor play with his animals. Love it.


For me, I still struggle with concerns of his lack of therapy in the other home and try to cope with that and just be grateful for the many days (4 days) a week I have my baby boy. 

I picked up as small 3rd job and looking for a more permanent one in our new community.  My goal is to get his equipment paid off by July 1st and have savings for future equipment and medical supplies. Still a struggle for daddy to be willing to collaborate with sharing  supplies - he knows I don't have the money to pay out of pocket and insurance supplies it so both parents to share. I hope daddy starts coming to his therapy sessions at Shriner's too so he can  learn how to use sign language, talk to his son, and do the PT, and OT that is essential for his daily life

Sunday, February 2, 2014

And the Cars go Vroom! Happy 2 years!!

Fun  Loving Days - Bryce is now 2 years old. 

 Cars go "Vroom"  
Airplanes go  "Neruum!"
Puppies go "arf arf"
.
Being proactive, knowing the right activities for BryBry, adapting his toys and environment are all things that I think are helping with strength..



 
Bryce signing more stickers ..he smiles... as says." mama!!"
The computer games we play together, activities such as imaginative little people/animals with cars and villages, reading books, finger painting, playing in the sand, in rice; it all stimulates both his body and his mind. 



At Shriners - They taught us how to support his arms
puzzle car app
Bryce enjoyed showing off his computer skills at Shriner's last week.  We love those free toddler apps - puzzles, cars matching games, etc. Nice work mister mister.

We are moving soon so the sesame street interactive application about moving is really helpful. I am teaching Bryce to say good bye to where we have been living  the puppies, the park, his friends, etc. We are both sad but also happy and excited for our new life and new home.
 We sing songs about cars, tractors, going down a bumpy road with animals in the trailer. He just loves making the sounds of a pig, horses and what a smart clever boy.

He completes the puzzles with me, he matches tractors and trucks to those in our books that we read about.

We draw imaginative homes for animals - thank goodness for the stickers - Love the lions. Bryce says "Lions go Roar!"


 
 
 


 
 




 



 

Sunday, January 19, 2014

Happy New Year 2014

My son is talking!!! I look forward to a year filled with joy, love, and at last "peace!"

Watching Bryce grow and develop is so wonderful and fills me with hope that he is doing better than ever. Besides respiratory system still the same since April, he is doing great -

  Bryce loves making gingerbread men from just things in the kitchen, nuts, tea, chocolate chips

Bryce has made even more milestones these days than anyone could ever imagine. He is talking to me and communicating very well about what he wants, making choices, holding his cup again, can say at least 30 words, sign 10 words - at the end I will list his progress - I am glad to say as a mom, he is getting the proper care in my home for his age and he as a result is excelling rapidly with the fine motor skills.


Bryce can pronounce most of the alphabet, does puzzles, can use speech communication boards now. I have been working on communication with pictures, the computer for many months now. Puzzles and books are his favorite now!! Bath time also, he loves swim therapy.



At Shriner's on the Swing in
 PT room
Working part-time I have had the privilege to educate and care for Bryce even more. With the knowledge of communication and speech therapies from my experience as a teacher working with speech acquisition I am thrilled at his progress. I took Bryce to Shriner - he was given his new AFO's and KFO's for his Stander - We picked out a nice standing device that he medically needs to help him with his posture, spinal alignment, keeping his body mobile, giving more circulation - they said this will extend his life -





Making Pizza with Mommy
Physical Therapy & Play -
Looking at Photos, Learning up /Down















My nurse Julie is the most amazing person I have ever met. The nursing company is fantastic to helps problem solve an finds ways to help me get needed equipment. On Dec. 23rd Dr. William Nichols ordered for our tank to be replaced at 1/8th full, but his father refused to share this tank, so in January when we didn't have oxygen in our home, the nursing company provided it for us. 

What keeps me strong is knowing that I am a great mom - I always put my son and his care first!! I love my friends and family and all those who make each day so fun.