Now I Can Session: July 2013

The folks at Now I Can just sent us the video of Bertrand's session last July. A month later, he was sitting up on his own. Way to go Mr. B!

Now I Can Session: August 2012

The folks at Now I Can just sent us the video of Bertrand's session last August.  It's amazing to see what progress he has made since then.  He is a champ!

Session 4 Week 2

Bertrand has been happy and alert most of each session.
Of course he made a face while I took this picture.

Bertrand has completed his second week of this latest session at Now I Can.  He has worked so darn hard. In spite of the two major set-backs this Summer, he has already caught up to where he was at the end of the prior session last Spring.  We're optimistic that he'll make more progress going into the next and final week.

We're also very excited that Bertrand's home physical therapist is back from her summer internship!  With Miss A, he'll recommence his intensive work at home. We expect that she'll build on his progress here too.

Speaking of progress, as school starts this fall semester, we've re-evaluated our activities.  I We had gotten spread thin, and our commitments weren't optimally aligned with our priorities as a family.  We've made some adjustments to our schedule.  Hopefully, this will help everyone feel happier and more fulfilled.

Parenting/Life is a balancing act!

Mind the gap.

Each session of Now I Can (intensive therapy) brings out changes in Bertrand. Only starting the second week of therapy, we've been seeing a BIG change: Bertrand is falling out of bed.

I promise you, we are not being neglectful. In the past 4 years that Bertrand has slept in a big boy bed, we've NEVER had this problem.

In fact, the first few times he did it last week, we thought it was accidental. We felt awful. (Luckily, its only a 2 foot drop and he didn't cry.)

We've kept erecting larger and heavier barriers at the foot of the bed. Then, last night, he made it out though this gap. And, via video monitor, proceeded to try to escape through it again!

The BIG change/issue is that Bertrand is actively trying to get out of bed--and succeeding!

On one hand, it is fantastic that he is strong enough and dexterous enough and willful enough to make it out. On the other hand, it is dangerous for him.

We've debated just putting his mattress on the floor, but that would be killer on our backs and my flimsy knee. Does this mean a hospital type bed/crib is in our future? :(

In typical fashion, I've held off on decisions for supposedly temporary measures (like this bed and the wheelchair) because such measures have the tendency of actually being permanent. I'm not ready for Bertrand to lose his kid's bed because, in the back of my mind, I still hope he has a chance for some semblance of a typical kid's life.

Well, regardless of whether I am ready for it or not, Bertrand may be ready. We'll have to start looking at bed options. Any suggestions? I can always keep telling myself it's just temporary.

Who can stay sad looking at a silly face like this?  :)

Session 4 Week 1

Bertrand completed the first week of intensive therapy for his 4th session at Now I Can.  Bertrand has made improvements every day but it was tough for him... and me. Victoria is a little ball of energy--not the sleepy, easygoing newborn she once was.

Victoria gets jealous of the attention the therapists (and mama) give to Bertrand.  We should all play with HER.  A few weeks ago she knew over 60 different signs (I've since lost count), and oh boy does she use them... especially to argue with me.  That didn't take long.  :-P


This summer has been brutal. Bertrand, Victoria and I are ready for school to start and for our beloved student therapists to start back up. I'll feel better once I know that both kids will have special one-on-one time.

Session 4 Day 2

Bertrand with his teeniest and cutest physical therapist.

We survived the first full day of therapy at Now I Can today.  We were lucky that daddy was able to go with us, and that Victoria got sick only once on the car ride down.  (Of course, she got sick just as we were pulling into the Now I Can parking lot, and just on the car carpet rather than her surrounding layers of bibs and absorbent pads.  Sigh.)  We're all exhausted.  Only 2.5 weeks left to go.  This summer has been crazy.

Another Session Begins

Today, Bertrand began another 3 week session at Now I Can.  He'd lost a bit of ground after his surgery, but luckily he didn't lose as much as we thought.  He is pumped and ready to work hard!

In other news, Victoria apparently inherited car sickness on an epic scale.  She vomited 5 times on the hour long drive down to Provo and (just) once on the way back.  The next three weeks will be "fun".

Climb into bed with Bertrand.

Joint Elmo trance.

Now I Can Session: May 2012

The folks at Now I Can just sent us the video of Bertrand's session last May.  It was exactly what we needed today. Our boy is amazing. Watch and see. :)

Wordless Wednesday

(We're baaaack! At Now I Can.)

Building Skills for Life

Another photo of Bertrand holding his own bottle. It never gets old!And, yes, he is man enough to borrow his sister's bedsheets when his are in the wash. ;)

This is an entry for our bloggy friend, Barbara's, blog carnival based on the American Occupational Therapy Association's (AOTA) 2012 theme, Building Skills for Life.

The first 3 years of Bertrand's life, we were so desperate to do everything and anything to help our son that we didn't take time to prioritize our activities with him. The birth of our daughter, Victoria, harkened a paradigm shift. We could no longer waste time doing therapy for therapy's sake. Therapy had to provide a measurable benefit for Bertrand.

We shifted our focus to building skills for life. We had to evaluate, cut back, and in very few cases add therapy. To everyone's astonishment, Bertrand is flourishing! It's obvious in hindsight, but we learned that doing a few things intensively and consistently yields better results than doing many things sporadically.

The October and December intensive therapy sessions at Now I Can, while valuable in and of themselves, forced us to consider what and how we provided for Bertrand at home. (He has me wrapped around his little finger, so Mrs-Tough-Mommy-Therapist, I am not.) We hired two WONDERFUL therapeutic aides for Bertrand--Miss A and Miss V--to implement the significant at-home exercise programs which was prescribed. Together we established a few goals.

Goal number one: sitting safely. Bertrand could sit upright when placed on the floor, but because of his movement disorder, he would fall over and hurt himself. Now, he keeps one arm down, braced on the floor, or reaches down to brace himself. He rarely falls! This was a continuation of his work with Now I Can.

Goal number two: self-feeding. Bertrand was still being fed soft foods and a baby bottle for most meals. So for every meal, even though it would be faster or easier to do it for him, we helped Bertrand hold his own bottle. And now? He can hold his own bottle for most of the meal!

In this same vein, he is made to hold his spoon to feed himself his applesauce snack in the afternoons and we've varied the textures in his dinner--expanding his palate. None of this goes smoothly. It is messy. At the start, he is unhappy, BUT he does it. And he is getting better! Every. Single. Day. You can see his growing pride and initiative reflected in his beautiful smiles!

Other broad, lofty goals include: mobility (walking, power wheelchair), potty training, and communication (speaking, reading). WHY NOT? Hopefully, we've got some time with him. Nothing ventured, nothing gained. Yes, these are skills for Bertrand's life, but they are also skills for our family life. The more interactive and happier Bertrand becomes, the happier we ALL are. :)

Art exhibit benefiting Now I Can!

Listen, watch, and I dare you not to cry.
Bertrand attended the opening for artist/photographer Michael Ririe's SCERA exhibit for Now I Can. It was fantastic! The exhibit is a moving one so, if you're near Provo, make a point to see it! For those of you unable see it in person, Now I Can will send you a gorgeous, hardbound copy of the book for a $29.99 donation.

Bertrand Attends Now I Can Photo Exhibit

Bertrand was lucky to attend the exhibit with his Nana & Papa!Below is Nana's report. :)
All children are a sacred trust. The NOW I CAN foundation, under the leadership of Tracey Christensen and photographer Michael Ririe, have taken these words to heart and turned them into action for children with special needs like Bertrand. As Tracey noted, “These are individuals who spend grueling days stretching, weight bearing, and exercising just to learn to sit, stand, or walk – things we’ve taken for granted our entire lives.”

Michael and Tracey connected in early 2011. Michael’s goal was to create a photographic documentary exhibition and book that would spread the word on the NOW I CAN Intensive Model of Therapy program and enable the Foundation to impact more lives like Bertrand’s. As with all of us who have become connected with the NOW I CAN family, Michael’s project quickly became a life changing experience. As Michael noted, “ My initial approach was to stand back and quietly observe while these patients received their therapy. They didn’t let me simply observe for long as they engaged me and were interested in what I was doing. Soon I was on the therapy mat involved in exercise and photographing on a personal level. I watched as my amazing friends struggled, recognized progress, smiled, fell, laughed, and cried. I felt connected and I felt alive.”

Along with other generous donors, Bertrand’s family made it possible for Michael to publish 500 copies of a NOW I CAN book. The book is an amazing photographic documentary of heroes like Bertrand with Bertrand’s beautiful photo on the opening page of the book. Touching stories from the families intersperse the photos.

To celebrate Michael’s extraordinary accomplishment, Bertrand and his family were invited to an intimate dinner with Michael before the opening reception of the exhibition at the SCERA Center for the ARTS in Orem, Utah. Nana and Papa Might were privileged to make the journey with Bertrand for this special evening.

To our delight Bertrand displayed some of his skills that he has developed since NOW I CAN therapy sessions. He held his grasp on a spoon with his left hand and got his yogurt into his mouth with assistance. To those outside the special needs community this might not seem like a big deal, but for Bertrand using his left hand has been particularly challenging. Every baby step, no matter how small or large, toward reaching his potential is a delight to watch. Even more heartwarming is to see his beautiful smile when he knows he has accomplished a task.

By the time Bertrand arrived at the NOW I CAN exhibition it was filled with people. Michael chose the SCERA Center for the Arts because approximately 20,000 to 30,000 people pass through each month. Bertrand signed in and then went to look at his photos on the wall and admire the artwork that he and other NOW I CAN children had created for the exhibition. He also met up with Sergio, his amazing NOW I CAN therapist. It was a lovely ending to a special evening.

Therapists in Sync

Miss V, little V, Miss A, Bertrand & Sergio discuss the NeuroSuit.
Yesterday, Bertrand had a 4 hour therapy session at Now I Can. He did fabulously! (And for the record, I am not going crazy. His scoliosis IS improving.) Bertrand brought his therapist entourage: Miss A and Miss V. We were all so happy that they came! They really benefited from seeing Sergio work with Bertrand and being able to ask questions. While they've clearly been doing fantastic things with B, they'll be doing some things differently next week for sure!

Bertrand's honorary mini-therapist, sister Victoria, listens intently.

Run to Walk 2012

It's time to gear-up for the 4th annual Run to Walk! Run to Walk is a charity run helping children with disabilities pay for physical therapy so they can reach their physical goals and greater independence!

(Basically, it benefits the Now I Can Foundation which has worked wonders for Bertrand.)

Bring the whole family for lots of fun!

There will be a 5K race and a 1 Mile fun run/walk.

In the 5k race there will be cash prizes for the top 3 men and women overall ($75/$50/$25) and a prize for each M/F age group winner.

Join us after the run for carnival games for kids, food, and a raffle for great prizes!

Cost is $15 for the 5K and $10 for the 1 mile walk/run until May 11th (price increases to $20/$15 after May 11, and race day price is $25/$20). Groups of 5 can register for $65 until May 11th (price increases to $90 after May 11, and race day group rate does not apply).

Online registration will close Friday May 18th at Noon.

Race-day registration will be from 6:30-7:30 am.

Register now to ensure availability of the right t-shirt size! See you at the race!

Now I Can: Session 2 Highlights

These images speak for themselves.

Update on Health, Therapy, Diet, & Family

Bertrand & Victoria enjoy snuggling on the couch with Abuelito.

Health:

Bertrand, Victoria and Mama have gotten their first colds of the season. Both kids are staying active and in high spirits in spite of the illness. In Victoria's case, this is her first cold ever and she has handled it like a champ. In Bertrand's case, this is his first real cold since restarting preschool 4 months ago AND he seems to be getting over it as quickly as Victoria and me. This is remarkable! His immune system appears to be doing better than ever.

Therapy:

As mentioned before, we jumped at the opportunity for Bertrand to attend another intensive therapy session at Now I Can. The 2 week session starts on Monday! Because of Daddy's travel, Mama's volunteer commitments and Victoria's cold, Bertrand's Nana is coming to the rescue. She will be taking Bertrand to Now I Can, so I don't lose (more of?) my mind.

Diet:

Since starting vitamin therapy, Bertrand has improved substantially. However, I was concerned about the high quantity of fat soluble vitamins (A & E in particular) that he was receiving. On October 31, his geneticist did me the favor of running levels for vitamins A & E. Bertrand's results were in the low normal range!

Vitamin A 0.36 (normal range: 0.20 - 0.50)

Vitamin E 6.0 (normal range: 5.5 - 9.0)

Why was I excited about this? First of all, this meant that Bertrand wasn't in danger of vitamin toxicity. Secondly, this meant that Bertrand had been extremely vitamin deficient, if after 3 months of vitamin mega-dosing he was just barely in the normal range! We were justified in our concerns.

Since then, Bertrand's vitamin & mineral supplements have been adjusted with the guidance of a naturopath. Bertrand continues to cry tears regularly, even to display emotion, which for us is a great sign!

One of the items which the naturopath brought up in Bertrand's initial examination was the possibility of dairy allergy or sensitivity. So on a lark, I bought some soy milk for Bertrand a week ago. There was noticeable improvement in his breathing and seizure level the next day. And, since then he has been doing very well despite his cold. We're still waiting on the blood test result for dairy allergy which the naturopath ordered, but regardless I will be more insistent when speaking with Bertrand's pediatrician about a referral to an allergist.

Family:

The past few weeks have really underscored how lucky we are to have family close by. Nana, Papa, Titi Saby and Uncle Steve have become vital to the functioning of our family! We loved having Abuelito and Uncle Dan out here for thanksgiving, even if the stay was too short. :) We're already looking forward to seeing them again, and more uncles and aunts, soon!

Standing in front of a gingerbread "house" at the Grand America.

Intensive Therapy: Week 3 Recap

Bertrand completed his 3-week intensive physical therapy session at Now I Can.

It was wonderful! We can't wait to go back!

Until then, the folks at Now I Can sent Bertrand home with a lot of goodies.

Personalized exercise plan.

Certificate of completion.

Awesome report card.

Fashionable "Now I Can" t-shirt.

Lovely notes from his therapists, Sergio and Natalie.

And, stickers and cupcakes from Natalie!

Oops! The cupcakes disappeared. How did that happen? ;)

Bertrand will also receive a video of his time at Now I Can. I'll be posting the video once I receive it and once both my teeny bosses permit. :)

Wordless Wednesday

(Only 2 days of intensive therapy are left.)

Intensive Therapy: Week 2 Recap

Bertrand just wrapped-up week 2 of his intensive physical therapy session at Now I Can. With one week left of treatment, he is sitting longer, his back is straighter, and his legs/hips look better. The experience has been great, and I am a convert to both intensive and neuro-developmental therapy (NDT) treatment models. Next week, I hope to take some pictures/video of Bertrand's progress. He is slated for another 3 week session at Now I Can in May 2012. Until then, I am hoping to find a NDT certified therapist closer to our home for maintenance.

Born to be wild.

Bertrand and his physical therapist, Sergio, had a lot of fun playing on this motorcycle parked next to our van!

Sergio can turn anything into an opportunity for physical therapy!

Of course, it also helps that Bertrand has a history of riding motorcycles. ;)