Hippotherapy Restarts This Monday!

Bertrand was accepted back into the National Ability Center's hippotherapy program! YAY! Hippotherapy (hippo is Greek for horse) is a horse-riding-based form of occupational therapy. Bertrand likes it. The NAC is located in Park City, UT--where Bertrand's grandparents are buying a home! He starts this coming Monday, April 19th at 6:00PM. This is a pretty late slot (the earliest of the remaining 3 slots), but this means Daddy can come! Bertrand's therapist will be a new one named Lisa rather than Kim, who we loved, but everyone at the NAC is great so I am sure we'll love Lisa too. These Spring Session II classes will run through May 24 and then he may get better time slots for Summer Session I (June 7 - July 7), Summer Session II (July 19 - August 18) and the Fall Sessions.

In honor of restarting hippotherapy, here is a "classic" video of Bertrand riding a horse at a hippotherapy session. Enjoy!

Today's EEG - Not so good?

Some days I resent my MD from wikipedia. Today is one of them. I wish I were one of those parents who could blithely go along with doctors and accept what they're told... Not really. That would be a heck of a lot easier than the hell I am putting myself through today, but someone needs to be awake at the switch for Bertrand's sake. Apparently that person is me.

Okay, enough preamble. What did Dr. Mom get from Bertrand's EEG today?

First of all, and this should be obvious, sleep deprivation for a child with epilepsy is a BAD idea. This is the first EEG Bertrand has been sleep deprived for and it sucked. I guess for most kids it helps them fall asleep and not move as much, but let's be honest with ourselves here: Bertrand has a movement disorder. His last sleep study confirmed that he moves almost as much asleep as he does awake--which is saying something. Furthermore, rather than seeing the new, improved Bertrand we got the old, seize-y, exhausted Bertrand. His new EEG looked like this:




Could this be slightly better than his older one? You be the judge.

Secondly, this EEG confirmed that Bertrand has photosensitive epilepsy, which we suspected. During the intermittent photic stimulation Bertrand's EEG looked like this:



Now, what had me really upset about this EEG wasn't the brain portion as much as Bertrand's electrocardiography (ECG or EKG) line, which is an interpretation of the electrical activity of the heart, during this EEG. Whenever Bertrand moved or sighed really big the EKG would hitch a little (which is normal) but during this period Bertrand was completely STILL. Here is the series of images of that over a period greater than a minute--look at the red EKG line on the bottom.







At first I thought that there was something wrong with the contact on B's chest, but as you saw, the EKG returned to normal on it's own. Since there was no video recording of this EEG, the technicians were under the impression that Bertrand had simply been moving or fussy during this period--which wasn't the case! Bertrand hadn't moved at all! So now I am faced with the decision of whether I should bring this up to B's neurologist. I happen to know that Bertrand's echocardiogram done at Duke was perfect. Will his neurologist think I am crazy? a pest? Or even worse, could this serve as a red herring, causing her to take even longer to adjust Bertrand's treatment? I really don't know if I should say anything. I'll have to consult with my favorite neurologist first.

Based on this EEG, I think that Bertrand may still be on track for trying ACTH treatment for his seizures (which would require coming off the ketogenic diet first). Furthermore, whether or not there were any changes in the EEG doesn't matter because, as my daddy always says, "you must treat the patient, not the EEG." Bertrand HAS improved over the last few months: he is more stable, he is smiling, he is laughing, he is more verbal, and overall his quality of life has improved significantly. And, that's what matters.

UPDATE: Whew! Spoke with my Dad in regard to Bertrand's EEG. The EEG is still highly abnormal (duh) but he thinks the one bad EKG episode may have been due to electrical interference from another electrode, since Bertrand was having a particularly bad subclinical seizure. Part of what suggests this is that the red line went from resembling an EKG line to resembling an EEG line, the other part is that Bertrand is still alive. Lovely.

Real Bertrand vs. Fantasy Bertrand vs. Super Fantasy Bertrand

Every once in a while, I'll have a conversation that shocks me. I had one such conversation yesterday but it has taken me until now to wrap my head around how the other person may have reached that view point. As any parent in my situation quickly learns, no one (no matter how close a family member or friend, no matter what kinds of other loses they may have faced, no matter how well intentioned), no one understands what I am going through like another parent in a similar situation. (I love you, Carrie!) Still, sometimes I make the mistake of assuming that friends and family understand more than they actually do--which results in shocking conversations like the one I just had.

I have a tendency, whether genetic or out of necessity, toward optimism. This blog is slathered thickly with my optimism. Well, what happens when someone takes my optimistic vision and layers it with their own (medically-uninformed) optimism? You get Super Fantasy Bertrand! This Bertrand is a pretty amazing guy. He'll be a mischievous older sibling, cook, read, attend normal school and then college. Heck, he even has a shot at winning a Nobel Prize like his namesake. I was shocked by how specific and unrealistic (at least if you've ever attended one of Bertrand's doctors' visits) this Super Fantasy Bertrand was!

Contrast this Super Fantasy Bertrand to what would be my Fantasy Bertrand. My Fantasy Bertrand would be lucky enough to live to his mid to late twenties. He'd use a walker eventually but likely need a wheel chair. He'd wear diapers and probably still need me to feed him. He'd really enjoy his special education! My Fantasy Bertrand would learn how to use a communication device and someday call me Mama! He'd stay my beautiful, happy baby no matter what and would die a hopefully painless death due to his leukodystrophy (white matter loss) and organ failure. This would be my Fantasy Bertrand--if I should be so lucky.

But Real Bertrand doesn't need to be like Super Fantasy Bertrand or Fantasy Bertrand to be a pretty amazing guy. To me, he already is. I couldn't ask for a braver little warrior. That's why I don't waste time thinking about a Fantasy Bertrand (much less Super Fantasy Bertrand). I love my REAL baby boy each and every day for the person he is. And, I hope everyone else will learn to do the same.

A Grateful Morning

I've been hesitating to make a post about the following out of an irrational fear that I may somehow jinx it: Bertrand has been doing really well! He seems to be back to his physical capability before the arm break in February, but that's not all. Bertrand is more verbal and expressive toward people. He is smiling and laughing more than ever before. When alone in his room it sounds like he occasionally sings songs to himself--not babbling or cooing--music is the only accurate term for it. Another odd positive is that he is louder! Since he was an infant Bertrand's volume has always been muted, but as of this week he sounds as loud as a normal toddler! He's been having clumps of what we call "seizure free" days (days free of myoclonic, astatic/atonic and tonic seizures), but also a lot less of the seizures we can't easily count, such as the absence or complex partial seizures. He is so much more "here".
Here is a story from this morning to illustrate. At 6:30 am Bertrand woke up for his bottle. I fed him and afterward tried to put him in his bed because he usually takes a short nap until about 8am. Well, today he wasn't having it. He started yelling--not crying--yelling immediately. So, I turned back to him (I could tell he was still tired even though it sounded like he was cursing me out) and asked him, "Bertrand, would you like to sleep with Daddy?" He immediately quieted and put his hands together as he does when he is very interested in something. Then he arched his little back to tell me to pick him up. I did and put him in bed with Matthew. Bertrand gave me the biggest grin, cooed (a thank you, as I would like to believe), smiled a sleepy smile again and closed his eyes. And, that was it! How wonderful is that?! I took a moment to stare in awe at my two amazing, beautiful, sleeping guys, basking in the feelings of joy and gratitude. As I went downstairs to make muffins, I couldn't help but feel that life couldn't get any better. :)

Such saggy muffins are what you get when you forget to adjust baking recipes for high altitude. They tasted great though!

We Won! A Utah Family Portrait Session!

I've been searching for a new family photographer for a long time. As cute as an 11 month-old Bertrand is, he is now almost 28 months-old, so the blog banner needs an update! Well, we've serendipitously found one! Our friend over at Bookscoops, Cari, recommended the talented and generous, professional photographer, Jessie Lynne (who took Cari's daughter's photos). It just so happened that on her own blog Jessie Lynne was hosting a family portrait session giveaway. We entered and won! The session includes a 1-1.5 hour photography session, digital negatives on cd, 1 designer design, 5 4x6's to give away, 5 4x6's to keep, 1) 5x7, and 1) 8x10. To say we're excited would be an understatement! Thank you, Jessie Lynne!

NEW Parent's Epilepsy Support Group!

From left to right: Me & Matt with Bertrand, Sarah & Adam with Cole,
John & Ashley with John Jr., Niki & Brian with Cole.

Last weekend, four families and one representative from the Epilepsy Association of Utah held the very first Utah Parent's Epilepsy Support Group meeting! I can confidently say that everyone got a great deal out of the meeting, except possibly the "dieters" themselves (as you can tell from the picture above), who were all under the age of two. :)

The meeting was put together and hosted by Ashley and John, parents to John Jr., who, while Utah natives, currently live in California. Also in attendance were Niki and Brian, parents to Cole, and Sarah and Adam, parents to Cole. All four boys are either on, or will be on, the ketogenic diet.

While the group was originally established as a way to connect families with children facing the ketogenic diet, it's being opened up to families of children with forms intractable epilepsy, such as Dravet's Syndrome and Doose Syndrome (MAE) who may or may not be on the ketogenic diet.

The meetings will be held monthly at a member family's home so that all children (including siblings) will be welcomed. And, no one will judge or seem even remotely surprised if a child has a seizure, needs a diaper change, cries, or sleeps the full time. It was such a relief to be in a room where no one gave us odd looks for Bertrand's behavior!

An asset worth mentioning of this group is Niki who, as noted above, is mom to Cole and has also battled epilepsy herself since childhood. Furthermore, she has a background as a service provider for the Utah Division of Services for People with Disabilities (DSPD). Given my ongoing struggle with the DSPD, I am looking forward to learning more from Niki! Maybe I can even convince her to grant our first blog "interview"? ;)

Breaking News!

Perez Hilton is reporting that Bertrand T. Might and Shiloh Jolie-Pitt have ended their year-long romance. The stunning break-up of "Shitrand" brings a discouraging end to the U.N.'s secretive "Beautiful People Breeding Program" (BP2) in only its second generation of trials. Representatives for both parties have declined comment, citing the painful split and a need for privacy.

Ladies, he is single.