It's amazing what asking for help can do!

Today, a mere week after the initial email to the mayor's office, there was a road crew working in our alleyway. Bertrand has some thank you notes to write! Look at all those wheelchair swallowing potholes: filled! :) School bus, here he comes!


We are extremely grateful to live in a city where it is obvious our son is so loved & valued!

Intensive Therapy & School Bus Follow-up

INTENSIVE THERAPY: Last Friday, Bertrand was evaluated for an intensive physical therapy program located in Provo, UT called Now I Can. By the end of his 30 minute evaluation, the therapist had Bertrand on his knees, free standing.

We were sold.

Bertrand will be starting the program on January 2 for 3 weeks, 4 hours a day, 5 days a week. (This was their soonest available opening.) We've set an ambitious goal for him: mobility. We have to strike while the iron is hot. After all, who knows how long this seizure control may last? Unfortunately, this means that Bertrand will miss the first 3 weeks of school next year, but we hope that this program will be worth it!

SCHOOL BUS: Last Thursday, Bertrand, Victoria and I took a walk down our alleyway with the mayor's office ADA coordinator, Michael Stott. Michael was very compassionate and attentive. He has asked the City's pavement manager to look at the alleyway. Now we're just waiting to hear back. My understanding is that our neighbors will have to agree to and pay for the improvement. I'm not sure that will go over well. I'll be speaking with Bertrand's teacher about some of the alternatives at our upcoming parent-teacher conference.

A gratuitous Bertrand video.

Bertrand stayed home from school today with a cold. But, he still managed to have lots of fun!

Can Bertrand ride the school bus?

There are so many reasons why I love Bertrand's "Dancers with Disabilities" class! Not the least of which are the people we meet there and the wealth of special needs information that gets exchanged. Below is the email I just wrote to our constituent liaison, at the encouragement of one of the volunteers in the class.

My family and I live in district 4. My 3 year-old son, Bertrand, has many disabilities and is in a push wheelchair. He attends the special education preschool program at Ensign Elementary.

Bertrand can't ride the school bus because the alleyway behind our house is unaccessible--it is far too uneven and rough. He practically got launched out of his wheelchair the time or two we have attempted it. We tried putting bigger front wheels on his chair to help with the bumps in the alleyway to no avail. (The front of our house is facing a steep hill with many steps & no ramps, so it is unaccessible as well.)

Basically, there is no access for him from the house to the sidewalk to get to the bus. So, I currently drive him into school Monday
through Thursday, but it breaks my heart that he can't ride the bus like the other kids. He would love it.

Is there a way for the city to pave the alley so Bertrand could get to his school bus? As far as I know, it is public property.

Thanks for your time and consideration!

Victoria in Venice

This year marked our 8th wedding anniversary. In celebration, Victoria and I tagged-along on Matthew's business trip to Venice, Italy. We were there for the past week.

Sadly, we were unable to take Bertrand on the trip. Bertrand couldn't miss school. (Besides, as we discovered, Venice is quite possibly the least accessible city ever!)

Fortunately, Bertrand was spoiled rotten by his grandparents for a week. Even knowing this, the three of us missed him terribly. Hopefully, with his continued improvement, he'll be able to visit Italy with us some day!

Here are some pictures from the trip--most are of Victoria. She was fussed over by every one--especially each Italian nonna she encountered. She also handled the plane flights like a pro. She turned 5 months-old in Venezia and celebrated with her first gelato!

Bertrand discovers fire.

Here are more pictures of Bertrand's fantastic weekend! After a quick dip in the pool with his Papa, Bertrand warmed his little toes by the fire. He had never shown interest in the fire--or signs of being able to simply feel warmth--before this day. But, he now LOVES the fire pit! You can see him laughing away with his Nana and Papa. (Click on any picture to see Bertrand's face close-up.) I think I see roasted marshmallows in his future. :)

Timeline

At Bertrand’s neurology appointment last week, the doctor laid out the following timeline:

• Follow-up appointment in 4-6 months
• Revisit medication in 4-6 months
• Repeat EEG in 6 months
• Repeat MRI in 2-3 years

I’ll admit to feeling some frustration upon hearing this but, as I noted in an earlier post, some times it takes doctors a bit longer to get on the right page. ;)

Fortunately, the neurologist is no longer key to understanding Bertrand’s case management. She never was. Bertrand was the key.

While some extra non-invasive tests, like an EEG & MRI, would give me peace of mind and validate the vitamin deficiency theory, these test are not necessary. I can see, with my own eyes, Bertrand’s seizures disappear, and I can see him progressing developmentally.

This is just a crazy theory, but I think that if we didn’t completely miss Bertrand’s growth spurt, his head measurement may increase since being on the vitamins B12 and A. He has microcephaly (his head measures 48 cm), but that can be caused by B12 deficiency. In young B12-deficient children, the microcephaly can correct itself in a few months with supplementation. I hope this is the case with Bertrand.

Last but not least, Bertrand’s seizure medications have already been decreased (without MD buy-in) with no additional seizures. And, in another few weeks, given continued seizure freedom, we will cautiously and slowly reduce the medication further. I would love to have a doctor’s help with this, but she wants us to wait months just to discuss the drugs!?

Despite the fact that Bertrand has been on Lamictal since November (9 months) and Depakote since February (6 months), she implied that the sudden disappearance of Bertrand’s seizures, within one week of starting the vitamin-B12 in late August, was most likely due to the lamictal and depakote! If we don’t lower the drugs ourselves, Bertrand’s neurologist will claim that the drugs are to thank for the seizure control. And, she is wrong.

She is not listening to me. If she doesn’t listen to me, then how can I listen to her?

First Day of School (2011-2012)

When Bertrand gets asked to smile, this is his interpretation.

Don't you just love Bertrand's "smile"? He was so excited for the first day of school! He recognized all of his teachers and did really well! He was alert for most of the time, bore weight on his legs, and socialized lots.

His physical therapist at the school wants to bring in a C.P. walker (which I guess is a kind of gait trainer?), to get him moving around, and a stander, so he can stand for some table work. I am excited to see how he does for her! (He tends to last longer for others than for me because he knows I am a pushover.)

After school, we rushed over to dance class (he ate a snack in the car) and he lasted for 45 minutes before passing out asleep. He was cheerful the entire time.

What a positive change since last year! My boy is all grown up. ;)

Oktoberfest 2011

Bertrand dances the polka at Oktoberfest.

Family Fun

Enjoying labor day weekend.

Vitamin A Deficiency

Everyday since beginning supplementation, it has become crystal clear to us that Bertrand was extremely deficient in vitamin A.

We have seen a lot of changes in Bertrand and, almost every time we google, it turns out that vitamin A is involved.

Vitamin A is important for more than just tears. Pretty much every moisture producing gland in your body (and there are LOTS) uses vitamin A.

So what are some of the changes we see in Bertrand? (Beware, there may be TMI for some.)

• Tears - Self explanatory.
• Styes - These are blocked oil glands in the eye lid. Now that the oil glands in his eye are coming back on-line, he has had at least 10 of these bad boys. I have to scrub his eyelids twice daily so they pop on their own. Lovely, right?
• Cradle cap - Also known as seborrhoeic dermatitis, this is caused by overactive oil glands in the scalp. It has gotten better after using Head & Shoulders shampoo, but there are still plenty patches left to pick off. Double lovely.
• Cough - Turns out that the lung has moisture glands that help with respiration. If they are going into overdrive like all his other glands, I can imagine it's uncomfortable. He is coughing a LOT. Maybe all the productive hacking will FINALLY get rid of that patch in his lung from pneumonia over a year ago. I can hope, right? (Coincidentally, his oxygenation high value rose from 95% to 100% for the first time. This may also be B12.)
• Snot - Oh. My. Goodness. There are rivers flowing from this child's nose for the first time EVER. I wipe his nose, turn my back for 2 seconds, & turn back to see his face covered again. Every tissue box in the house is depleted. Moving on...
• Bowel movements - He is having at least one every day--no miralax needed. They seem to have a coating?! Google... yup, your intestines all have mucous glands. I'll stop here.

I didn't even realize how weird (and time consuming) it was to slather my child in Cetaphil and Aquaphor multiple times a day, shove Ayr up his nose nightly, add Miralax to his drinks, set-up the humidifier in his room, put drops or ointment in his eyes every 2 hours... until now.

And, to be honest, I am angry. Furious, even.

It's more than the scar on the cornea of his right eye. It is every strained bowel movement he suffered. Every time we had to pin him down, screaming, to put drops in his eye, or dig un-yielding snot rocks from his nose. Every cold he couldn't shake. Every hospitalization. Every tear he couldn't shed.

All the pieces of the puzzle were there. So why did I have to be the one to put it together?! We've paid "experts" hundreds of thousands of dollars to poke & prod my poor child. And, at least for these symptoms, a simple vitamin supplement was what he needed all along?!

I am horrified. And, not just for Bertrand, but for all the other children and their parents, who are also overwhelmed, but lack the energy, stubbornness or chutzpah necessary to second guess the experts.

"It's worth entertaining the hypothesis."

Best friends.

At yesterday's appointment, Bertrand's neurologist didn't shoot down my proposed thesis! Her exact words were: "It's worth entertaining the hypothesis." I'll take it. It's way better than the facepalm I was expecting. :)

She referred me to Bertrand's GI doctor for vitamin deficiency and dosing issues. He responded quickly, but his answers sounded like he really didn't understand the question: "Could a prenatal hepatic insult result in severe vitamin A & B12 deficiencies?"

I've come to the conclusion that I finally don't care if the doctors are on the identical page as me. They will eventually catch up. I know what needs to be done. I've got my 10,000+ hours worth of expertise in Bertrand.

That said, I am utterly exhausted from playing with 2 active, happy kids all day! More videos, pictures, and explanations will have to wait just a bit longer.

Have a happy labor day weekend!

Cookies for Cole!

Michael, Josh, Bertrand & Sophie working the crowds

before the football game, raising money for Cole.

This afternoon, Bertrand and our fabulous neighbors, Michael, Josh & Sophie (plus their mom and dad), held a "bake sale" for our good friend, Cole. The kids were touched by Cole's plight and took to finding ways to help him. They raised money at their school and at the football game today. We are so lucky to have such caring, generous and creative neighbors!

This fundraiser was so easy and fun. We may do another sale later this month. (The official "Cookies for Cole" day is September 17th, but we couldn't miss the opportunity presented by the Ute's first PAC 12 game!) I hope others also help by holding bake sales for little Cole, or contributing in any way. Go Utes! ;)