Thursday, December 26, 2013

Albenrose Dairy - My 10 days before Christmas with Bryce

My sweet angel enjoyed his first trip to the magical place at Albenrose Dairy, "Story Book Lane."

What a fantastic day! Loved watching his eyes light up with the animals and Magical Land of Christmas.

 Bryce has been sick most of all last week, since the 15th, but with home therapies and some part-time nursing help he has almost recovered.  Its nice to get out of the house and have warmer temperatures. Even still, my stay-cation  over the past week has been just wonderful!!! I love Christmas with Bryce - we've been doing the 10 days to Christmas in Hanukah style. Every day a little fun thing to open / play with.

I've been trying to get cards out to friends and family this year. Bryce has been helping with the coloring, the stickers and he even tells me where to put the pictures.  If you are reading this and don't get a card, send me an email or text me your address. 

Bryce is talking more - I have been very happy to use the activities and communication techniques that have worked over my many years of teaching ESL. Language acquisition, sign language or "Bryce language" is rewarding especially when he says, "a hat" dogs go "arf arf" "moo" for cows, "pig sounds" for pigs. He says, "that one" "wa wa" for water or my nectar puree I make him.

Our divorce was finalized this past week. With joint custody and Bryce's care being prioritized, I am so glad to be able to move on with my life. Its very judicial now and my equitable requests were all granted.

 Lucky for me, I have a great relationship with our providers at OHSU. They love me because I was once a Doernbecher baby myself. I am alive today because the doctors were able to diagnose & treat me with Kawasaki's Disease just before it took my life as a young child.

I am in a much better place in my life now compared to in May when Steve abandoned us, emptied our bank accounts, left me homeless and penniliess without a job.  Fortunately a good family friend took us into her home and she has given us the best Christmas gift ever, "love" and "friendship." Many friends and St. Matthews have been an incredible support -  I am grateful for my friends who have helped with fundraising, spreading awareness about SMA, gift boxes of clothes, emergency food boxes, being a shoulder for me to cry on, providing me with confidence, awareness, and overall a new faith in life, God, and myself.

My goal is to help educate other mother's and women who find themselves in a situation similar to mine - not having a husband willing to provide help and who I had to obey - was chatastropic especially when he ignored my pleas of help and help me with our son's special needs.  I couldn't even go to coffee with out of town friends once in awhile, or work on Sat, or see my doctors to help me with post birth complications because he told me he couldn't care for our son.  The biggest issue that will always haunt me is that he just was brutal verbally and emotionally the first 9 months of Bryce's life; telling me there was nothing wrong with our son even when he just wasn't hitting those basic milestones. Even after the diagnosis, he simply refused to allow me to use cough assist or feeding pump when he was home. He said our son was perfect. 

I remember having to feed Bryce from November to the end of February ever 2-3 hours a day with a syringe to his mouth, feedings lasted an hour because we couldn't always get his NG tube to stay in and doctors refused to do gtube surgery as he was not an "emergency" case. We never had any nursing help or home support until I hired private nursing after Bryce's first illness in April 2013 when Bryce required 24 hours gtube feeding- never would have made it without my mom's group nor great friends who stayed the night.  My friends have been so amazing. Beyond anything I could imagine friendship to be. Now that court is over, I can begin organizing and planning for our future.

Love and Gratitude to all who have helped us out. Your love, good energy, and prayers are very powerful.

Saturday, December 14, 2013

Holidays are Here

Bryce just loves Snowmen and dollar tree is perfect
The holidays are  my favorite time of year. This year especially I am grateful for living in a beautiful home with friends, decorating the Christmas trees with Bryce, being able to see him grow stronger.

Bryce learns about 3 new signs each week. This week he signs "nona" which is Italian for  Grandma - He can sign "red" and actually speaks "Wa wa" for water and "that."   I enjoy so much participating in his daily play and activities. The physical therapy and work I do with him  especially the speech therapy has made a world of difference. We look forward to Brittany coming back as our SLP helper later this month.

Weds  Nurse Julie helped Bryce decorate the
Gingerbread Man. Mama and Bryce did
the little house.  Thank you Trish and
 Shriners for these decorating kits!!!

foam to allow some weight bearing / Foam wedge for tummy time

Bryce likes to use touch screen on my phone and is great at using the up and down arrows on my computer to look at pictures of  his daily life, schedule and his friends.

We are looking forward to the Christmas services at church. Many of our friends will be in the church play/choir.  I have starting up my MOPS group:  
The love and support from these friends and fellow moms since last year has been extremely helpful. Now, I have a chance to help those  new moms and give back to others who  helped me through y the greatest challenges of my life especially when Steve left us in April of last year 3 days after Bryce's "big" illness. This Xmas so grateful Bryce has regained his ability to communicate again and have more strength.

Our annual ginger bread
Look mama, its a house with candy
I placed Bryce on the table next
to the house and with help he was
able to reach and help decorate
Speaking of friends, its so great to continue play dates. Now that my divorce is almost final, its  having my friends who have stood by us and continue to stand by us means the world to us.  This is the greatest gift of life "friendship."

Pediatric Stander that Bryce will begin
therapy with soon.
We went to Doernbechers/Shriners this past week, Bryce's strength has impressed the doctors. I met with Dr. Sussman, super expert in SMA and orthopedics as well as the rest of Bryce's team.

They have given me the hope and encouragement I have been praying for. They casted him for KFO's which he will use as standing braces for a standing machine. They will help us get the stander and they approved him for wheelchair therapy - basically sessions that train and help put him into the correct elect

Example of Electric Wheelchaair that
Shriners said Bryce could get into soon.
ric wheel chair. 

Last month teaching Bryce
to brush his teeth / Now he does
it on his own; at mommy's
house anyways.

Bath Play / Therapy Daily


Wednesday, December 4, 2013


One of the greatest moments as a mother is watching my son's eyes light up - especially when it comes to cookies.   By far this is the most awesome activity we have done. 

Nurse Julie helped so much with this one.
She meticulously helped him get all those shiny colors on the icing. 

He's working so hard. Precious sweet boy . Finally our finished product!!

Friday, November 29, 2013

Happy Thanksgiving

Family and friends make the holidays so wonderful. Bryce and I are really enjoying our craft times, play dates etc.  Nurse Julie brought us some finger paints and he painted for an hour and a half.
Bryce at the park making friends 

Bryce loves to draw circles and lines and squiggles with shaving cream too in the bath. The water crayons are really exciting for him too.  He gets worn out through day but his 2-3 hour naps give him extra energy before bed.

He loves his routine and so do I, its  nice that we have so much consistency. Nurse Julie has learned how we do out daily activities and what he likes. She is really great at working with us. I have felt more confident now as I went back to teach for the first

Bryce and our Friend Calypso
She is 6 months older and was able to come visit us at our home
Bryce making a thank you gift to Emily for
going to the zoo with us.


Sunday, November 24, 2013

Santa and Bryce Talking!!

What a great day!

And, what a blessing today as we went for our walk to run into the Heritage House, here in our little town, and we met Santa.

  I didn't think we'd see Santa this year because of crowds etc.  There he was, without any lines, or folks waiting. I was very happy to relax, Santa was so kind and was very open to learning how to hold Bryce.

What a nice place!! What a gift!

 Bryce is babbling too so much. Check out this 12 second video below

One of my concerns was his sudden loss of speech in July and months without Steve's nursing team doing the same kinds of exercises and speech therapy. Its concerning that they ignored the medical orders - Physical Therapy is as important as OT and Speech. We don't do traditional PT because its contraindicated for children with SMA, but we keep Bryce active by letting him hold a cell phone, that is considered PT or reaching up high to touch the bunny on his mobile above his bed. Daily play is his therapy. Talking and singing and babbling is the key to extending my son's life.

Speech: Well the Barium Swallow was done when  he had an ear infection and so as most providers know, when a child is sick, its  not really the best assessment of his swallowing capabilities. However the facts remain - speaking and swallowing are the two areas we focus on at this time.  Bryce does have a hard time swallowing pureed food, does better with his sippy cup. Most of his food is via g-tube. Dr. Finanger (Bryce's neurologist) explained to me that when he loses the ability to speak, he loses the ability to swallow well, and that means more suctioning and eventually 24 hours of suctioning to prevent aspiration. (that is with or without a vent)   
For now, Bryce is an amazing strong little man fighting SMA.  He is doing great!! He is talking more and more and the doctors are in awe of his own little milestones.  I am so proud of him.

Thursday, November 21, 2013

November Fun

Its great that in October and November I've been able to have nursing a couple times a week and now if I get sub hours, there is now staffing available for me.  I still have to work the details out with our Medically Fragile Nurse Coordinator, but very pleased with the transition of mommy being full time caregiver to mommy being able to have a nurse and be mommy a bit more often.
I have had a wonderful addition to our family - a student studying to be a speech therapist has been coming since about September. I am grateful for working part-time so I can afford to have her work with Bryce. She is excellent and its been a terrific collaboration. I modeled the flash cards, drawing, using colors, matching cars to pictures and colors - Bryce has regained some speech that he lost in July - Between my working with him 4 days a week and my student helper along with physical therapy added into his daily play, he is really much happier, motivated, and making strides to catch up on some lost skills at his age level. I know that my educational career was going to be beneficial, I had no idea, how powerful and rewarding being able to educate my son and adapt activities for him so he can learn what other kids learn.
Its unfortunate that I had to leave teaching at ELS in May to care for Bryce full time, however, I am fortunate that I was rehired as a substitute when needed. This is so great. In the meantime, when I am not subbing or caring for Bryce,  I enjoy landscaping a couple times a week. 
Additionally, I have managed to coordinate all the Speech, PT, OT providers to communicate with our nursing company and so they can implement at least basic safety and routine therapies in both homes. 
I updated Bryce's Care Plan. Check it out!!

Tuesday, November 5, 2013

Rhinovirus Take 2

Well - good news and bad news -  

Sunday when I picked up Bryce from daddy's he had a bit of a cough and runny nose, but he seemed cheery and energized.  A cute little trooper.

Once home we relaxed, went for a walk where he fell right asleep. I knew then, he must be coming down with a cold. Per doctors, a runny nose and cough must be treated with utmost care and diligence. Last April, same virus and in 12 hours he was in respiratory distress.

I was grateful Sunday night to have all the  bipap, oxygen cannula, nebulizer, albuteral, cough assist and suction machines at his side.  We played, took a bath and blew some bubbles - did exercises in bath and showed off to Martha some cool new moves.  Then read books, did cough, suction and albuteral.  I played guitar, just a couple songs and he fell right to sleep.

In an hour his stats while on bipap dropped to 88 -   86 -85 - He did not pop back up like he usually does. So I repositioned him several times he bounced up to 92 then would drop again. I woke him up for treatments and put him back on bipap. His stats went up to 94 after treatments and then up to 98 once bipap resumed. However, I think by 1 or 2 am Martha came in to say goodnight, we were both finally asleep. I am so grateful to have her help especially with rough nights like this one.

Monday I woke up at 6 am to do repeat all the treatments again, begin chest percussions. He responded very well and sounded great. I used the bulb to suction his nose and the BBG can only be used so much or it irritates his nose and hurts.   He seemed very under teh weather so we snuggled, watched some videos and excitedly waited for nurse Julie to arrive. I was so thankful, so I could go get a little bit more sleep.

It was no surprise that by 4pm our pediatrician recommended back to the hospital. Sure enough, he has the Rhinovirus. What is nice is having the reassurance and the help to care for Bryce while I can relax. This was similar to previous visits - but this time not as scary as he was not in distress - My son's doctor appears to be more proactive at this time. I am concerned though that he is not a dietician and there has been a lack of follow-up with his communication with the dieticians, OT, PT, and Speech.  

Its late, I am tired.. Bryce fell right asleep in my arms tonight with bipap at the

hospital. His stats are all back up, his secretions are gone, they gave him an antibiotic for his ear infection.

What I learned from this one is that no matter if he is on bipap or not, if he is sick, he will still drop.  There is much more to learn about my son's respiratory care.

Heading home tomorrow I hope.  Looking forward to it.
Love all - Jenni and Bryce

Thursday, October 31, 2013

Happy Halloween

This year its a joy to see Bryce in his costume, playing with friends. Pooh and Tiger look out!


 I love my little man. He is such a joy. Thanks to everyone who came to our little party!

What a wonderful afternoon of fun and being with friends.  It was nice to see our friends from Albany and meet new ones as well.

It is a blessing to live in a small community - walk to the park, library and play in the leaves. 

He loves to point and learn about the colors of trucks and cars.