Good Orthopaedic News

This morning Bertrand got some great orthopaedic news! His two hours of stander time every day has paid off big time. His hips, knees and feet now look great! Dr. Woiczik recommended as much time in the stander as he'll tolerate (over 2 hours would be even better). She wants to see Bertrand back in another 7 months to take more x-rays and see if orthodics may work better for him then, but for now she thinks he is building great strength and flexibility on his own!

And now, because I couldn't resist, here is another graph for Bertrand's one-month ketogenic diet check-up later this afternoon. :)

A picture is worth a thousand words

This graph is one of several included in the report I am presenting to Bertrand's Keto Team at his one month check-up tomorrow. I think it pretty much says it all! The diet is working slowly but surely for Bertrand. :) On a daily basis it is so hard to see the forest for the trees, but a graph like this sure does help!

NOTE: These numbers start from a week into the diet when these seizure types became infrequent enough to count! Before starting the diet, both kinds of seizures were in the 100s. We are still not counting Bertrand's absence type seizures.

More 2nd Birthday Party Goodness

Bertrand's 2nd Birthday Party

Click HERE to see more pictures from Bertrand's second birthday party today! Everyone had a fantastic time! While it was not the most keto-friendly of parties, Bertrand did not mind at all. He was too busy watching his friends, balloons and Elmo!

Musik Garten

Bertrand had his very first Musik Garten class today! Musik Garten is an educational program that helps infants, toddlers, and children develop a deep love of music and the ability to express it. This class is run through DDI Vantage, our county's early intervention office, so it is a class full of special needs kids under the age of 3. Just from today, I can tell that Bertrand is going to really get a lot from this class! Since he loves music, he barely fussed the entire time. (His speech therapist Meghan showed up to cheer him on.) Furthermore, the teacher Ms. Catherine is fantastic and personally familiar with seizure disorder. I think this is a recipe for success!

Just so you can see why this class would be useful to special needs kids, here is some information from the Musik Garten website:

• Music is a language, and children are oriented toward learning language.
• Music evokes movement, and children delight in and require movement for their development and growth.
• Music engages the brain while stimulating neural pathways associated with such higher forms of intelligence as abstract thinking, empathy, and mathematics.
• Music's melodic and rhythmic patterns provide exercise for the brain and help develop memory. Who among us learned the ABC's without the ABC song?
• Music is an aural art and young children are aural learners. Since ears are fully mature before birth, infants begin learning from the sounds of their environment before birth.
• Music is perfectly designed for training children's listening skills. Good listening skills and school achievement go hand in hand.
• Developmentally appropriate music activities involve the whole child-the child's desire for language, the body's urge to move, the brain's attention to patterns, the ear's lead in initiating communication, the voice's response to sounds, as well as the eye-hand coordination associated with playing musical instruments.
• Music is a creative experience which involves expression of feelings. Children often do not have the words to express themselves and need positive ways to release their emotions.
• Music transmits culture and is an avenue by which beloved songs, rhymes, and dances can be passed down from one generation to another.
• Music is a social activity which involves family and community participation. Children love to sing and dance at home, school, and at church.

Now, I'll admit that while I thoroughly enjoyed the class with Bertrand, it was daunting. While I am used to Bertrand being delayed around normal children, it was shocking to realize that he is the most delayed out of a group of delayed children. The kids in the class ranged the gamut of possible delays: physical, mental, behavioral, sensory, communication, etc. Not only does Bertrand encompass all of those issues, he is also the most delayed at each. Quite the distinction! I know several parents probably left that classroom thinking, "hey! things aren't so bad!" I comfort myself in knowing that we made a lot of their day, if not week! :)

Two Year Check-up

Bertrand had his two year check-up today with Dr. Samson-Fang, his pediatrician. There is nobody who doesn't think she is amazing! We're in the fan club too. :)

At the appointment, first Bertrand got his few remaining shots and is through with his vaccines until about age 5. Then, Dr. Samson-Fang and I talked about:

• What the status of Bertrand's team at the hospital is.
  
• How to manage Bertrand's health on the ketogenic diet (supplements, etc.).
• Getting insurance to cover KetoCal or KetoVolve.
  
• Which sugar-free medications he can now use for fever, etc.
  
• Which labs will be run (vitamin D, albumin, PTT--blood clotting function).
• Getting Bertrand on the medicare waiting list (5-7 years).

Going into Bertrand's one month Ketogenic check-up on Monday, I think Dr. Samson-Fang's support means a lot. She liked the ingredient list for the KetoVolve formula (no transfat, plus MCT oil) more than KetoCal's so I am hoping that will give me sufficient leverage to convince our dietitian to let Bertrand give KetoVolve a try.

The next few days will be quite the whirlwind! Tomorrow, Bertrand starts his Musick Garten class. Saturday he has his birthday party. And Monday, Bertrand has an orthopaedic appointment, then a fitting for his leg braces, physical therapy and then his one month keto follow-up! Whew! Glad we're finally healthy again to tackle all this!

Happy Second Birthday!!!

Today, Bertrand turned 2 years old! Joy! Joy! Joy! This is a milestone of momentous importance to our family. 15 months ago we never thought this day would never come. Bertrand was given a grim prognosis and a 24 month life expectancy. We've made every day since count, and will continue treating each day with our precious little boy like the gift it is. I am so overcome with happiness that my baby is still alive. I've been through one crying jag after another all day long, but like I told a friend today, it would be a lie if I said all those tears were happy ones. Several of Bertrand's special needs cohort (Cooper, Gage, Ethan, Joseph and countless others) were not so lucky as to make it to their second birthdays this year. We hold them in our thoughts and in our hearts today as always.