March 29, 2011

Battening down the hatches.

This scene greeted me picking-up Bertrand from preschool on Monday.
Is there any wonder why he is sick AGAIN?

Bertrand missed his physical therapy session and dance class today because he has a cold. He has a stuffy nose, slight fever, and clearly feels out of sorts. This has him yodeling to be held non-stop.

When Bertrand would finally fall asleep, which allowed me to put him down, I was scurrying to get administrative items done before our big April deadline. No, not April 15th (although I worked on our taxes too). I'm talking about April 8th: our daughter's estimated due date!

It feels good to have my desk almost clear, inbox almost empty, baby items prepped, and Bertrand's follow-up appointments set! I almost feel ready!

PS - I was amused (and touched) to walk into this scene as I got out of my shower last night:

It seems that Daddy was doing some last minute studying for the big day! When I questioned him on what he read, he claimed to have "only skimmed it", but proceeded to correct me on ALL labor related topics for the rest of the night. Uh huh. :)

March 26, 2011

A Day at the Ballet

In celebration of Purple Day, Bertrand, Daddy and I attended the University of Utah Tanner Dance Program Children's Dance Theatre production of "Through the Looking-Glass" at the Capitol Theater in downtown Salt Lake City. Bertrand proudly wore his Epilepsy Warrior t-shirt to the show and behaved like a seasoned theater-going veteran. It was our first time using Bertrand's wheelchair for a public outing of this nature.

From buying wheelchair accessible tickets, to finding wheelchair accessible parking, to getting the wheelchair in and out of the theater, to finding our seats... the entire process was tedious. Even though the theater was located less than 10 minutes from our house and we budgeted over 30minutes to get there, we should've budgeted over an hour. I sincerely hope we get better at working the system/timing/etc. because Bertrand deserves a chance to be out and enjoy things like other children. He shouldn't stay cloistered at home simply because the act of going outside is too big of a hassle.

Other than having to watch the first few dances from the lobby, we all enjoyed the performance. Bertrand was fascinated with the light changes on stage and throughout the theatre. He spent the first portion of the performance watching the Audio-Visual technician next to him work at the control board and he actually watched the dancers for the second half! Hopefully, this experience also helped Bertrand acclimate to a theatre setting for his dance recital in May. :)


A day at the ballet could inspire just about anyone to take a second look at their health. While I am certainly eager to get back into shape this summer, Bertrand's well-being is my bigger concern. His weight has been holding steady for the past 2 weeks. That needs to change--for the sake of his bones, muscles and respiratory system. Bertrand's calories were set at 1076, but he has only been consuming between 800 and 900 without further weight-loss. We're changing his yogurt to a lower calorie version in an effort to enforce a new 814 cap. And, we will keep increasing his stander time along with other calorie burning activities, such as taking steps in his gait trainer and playing in prone position.

March 25, 2011

Can you help us identify this seizure type?

Can you please help us identify this seizure type?

UPDATE: We have confirmation that it's myoclonic cluster. Thanks, Mike & Sarah!

This is a small chunk of one of Bertrand's weird looping seizures. It's kind of subtle. You have to watch Bertrand's face, eyes, and arm. I get so wrapped up in trying to snap him out of these loops, catch his attention or comfort him that I always forget to take video. Daddy is much more on the ball! However, given the poor quality of this video, we'll try to take another, and I am sure Bertrand will give us the opportunity.

These seizures typically happen early morning, late evening or in the middle of the night, so we think they are related to sleep. Bertrand's breathing pattern changes and his eyes, head and one arm are involved. To me, he seems partially conscious but unresponsive. The episodes last up to 10 minutes and end with a large, full body myoclonic jerk, then some mouthing/teeth grinding and then immediately some sleep.

We've caught him doing this about once every other day. (But, then again, I don't stay up all night watching him, so we don't know frequency for certain.) My theory is that this could be a form of a myoclonic cluster or some kind of partial seizure. If we can determine which kind of seizure this is, then we may be able to treat them more quickly and effectively.


Many heartfelt thanks to all of you who have generously donated!

Every four minutes, a person in the US is diagnosed with epilepsy. In the time it takes you to read this, someone will hear the words, “it’s epilepsy.”

Epilepsy affects people in varying ways. For people whose seizures are quickly controlled on the first medication used or who outgrow their seizures, the impact can be limited. But even those whose seizures are rare or quickly resolved may experience discrimination because of epilepsy. Anyone who has seizures loses precious moments of time and lives in fear that another seizure can occur without warning. Others find that their seizures affect learning and mood, or that side effects of medication interfere with daily activities.

Epilepsy is more common than autism, multiple sclerosis and Parkinson's disease combined and still it carries with it a stigma that dates to ancient civilizations. That’s why your continued participation in the 2011 National Walk for Epilepsy is vital.

At the Walk, people affected by epilepsy in different ways join together with family, friends and supporters to raise awareness about epilepsy and help fund research so that we can create a world where not another moment is lost to seizures.

March 24, 2011

Welcome home, 1st Lt. Uncle Booj!

At 3:30AM, Bertrand's Uncle Booj (1st Lt. Might), arrived home from his year-long tour of duty in Afghanistan. We couldn't be more proud of him or happier to have him home! We love you, Uncle Boojie!

Thank you to all the men and women that serve and have served our country!

Uncle Booj earned a Bronze Star for his exceptional service in Afghanistan.
For exceptionally meritorious service as a platoon leader in support of Operation Enduring Freedom. First Lieutenant Might displayed the highest degree of professionalism, sound judgement, and technical and tactical competence. First Lieutenant Might's accomplishments played a key role in improving and expanding the network infrastructure throughout Regional Command (South). His untiring pursuit of excellence was a major factor in his platoon's ability to accomplish their mission. First Lieutenant Might's actions are in keeping with the finest traditions of military service and reflect great credit upon himself, USFOR-A/Corps-Afghanistan, and the United States Army.

March 23, 2011

Parent Teacher Conference

Bertrand shows off! He rolled to the toy, picked it up & played with it from prone position.

Today was Bertrand's first parent teacher conference at his new preschool! Growing-up, parent teacher conferences were never a big deal at our house. However, in the online special needs community, parent teacher conferences seem like a big, dreaded deal.

Where along that spectrum did Bertrand's conference fall?

I would've skipped, hopped and danced on my way out! ...that is, if I could still do any of those without going into labor. :)

In other words, the conference went really well! We could all gush about how well Bertrand is doing, how he is meeting and exceeding goals (goals which were lofty when we set them), and how much he is enjoying school. They confirmed what we well know: Bertrand today is not the same Bertrand they evaluated back in December.


We discussed what would be necessary for Bertrand to receive summer school. Summer school is set up to maintain skills rather than maintain momentum/progress. It is one day a week, in-home, and for 4 weeks only. To qualify, Bertrand would need to regress over spring break, and I'm not sure how I feel about that.

This got me thinking that even if he does qualify for summer school, obviously one day a week of school/therapy is not enough. I'll have to explore summer additional options anyway.


Has anyone had experience with Now I Can? It's an intensive physical therapy program located in Provo, UT. (Yes, I am delusional enough to hope that Bertrand could be at a point in his seizure control that he could benefit from intensive physical therapy this summer.) Now I Can has a July 11th through August 5th, 4 week session with openings in both the AM and PM. It costs $2000 per week--OUCH! But if it is worth it...?

March 22, 2011

Coming Up: Purple Day 2011!

Purple Day is March 26th! This is a day to raise awareness for Epilepsy around the world. Our friends over at Bookscoops are holding a Purple Day Challenge and Book Giveaway, so please stop over there and submit an entry for this great cause.

In honor of our many friends struggling with epilepsy and seizure disorders, our family will be wearing purple all weekend long. Bertrand is a "virtual walker" in the National Walk for Epilepsy in Washington, D.C. All the funds raised will go to research and raising awareness for epilepsy. A big thank you to everyone who has supported Bertrand, and other children like him, with a donation!

March 21, 2011

Milestones? Inchstones? By any measure: Progress!

Matthew, Bertrand & me (+Victoria at 37 weeks 3 days gestation).

This morning, Matthew and I woke up to the sound of Bertrand having another of his long, looping seizures. Not a good sound to wake up to. Just when some of Bertrand's other seizure types are lessening, another pops up. It's like whack-a-mole.

(We need help identifying Bertrand's weird looping seizures, so I'll post a video later this week. If we can identify these seizures, then maybe we can treat them or know why his medication either causes them or doesn't work on them.)

Understandably, I think, watching Bertrand suffer from the seizure itself and it's aftereffects, coupled with the prospect of facing yet another medical hurdle dampened my spirits. To cheer me up, Matthew began to list Bertrand's progress, regained skills (*) & new ones.

Weight-loss: over 1 pound in 2 weeks
Weight-bearing: up to an hour daily in 2 weeks
Bearing weight on legs*
Taking steps with gait trainer*
Playing in the bathtub*
Picking-up toys on 1st try
Smiling at known & unknown people
Demonstrating recognition of people & things
Tracking adults, children & animals*
Vocalizing with people*
Searching for the source of a sound

This is all in addition to other items we are grateful for, starting with the fact that our precious son is alive AND HAPPY. He will meet his little sister and she will know him. He doesn't depend on a g-tube, trach, vent, oxygen... he is relatively healthy with no recurring infections, and much more. We are truly fortunate--even if Bertrand now has weird looping seizures. :)

March 16, 2011

Bertrand's Right Hip - The Remix

Bertrand wearing his St. Patty's day best.

At Bertrand's most recent physical therapy session, I brought up my concerns about his right hip with his therapist. She has been working with Bertrand since he was a little more than a year-old. She was shocked that doctors considered him a candidate for phenol injections.

His therapist works with many children who receive the injections, thinks the injections work great when indicated, and agreed that for the right adductor muscle phenol would be the correct choice because botox really works best for smaller muscles.

However, Bertrand's subluxation has not changed in years (she thinks it may simply be the way his hip formed), he has full range of motion in that hip, negligible spasticity (it's only an issue during an exam when he starts to fight rather than during normal use), and he is in no pain.

I felt a huge sense of relief because it seems that canceling Bertrand's injection appointment was the right choice. Doctors can only go by what they see in a 30 minute appointment, every 6 months. Bertrand's therapist has seen him for an hour, twice a month for 2 years! I trust her take on his hip's functionality more than the MD's.

Going forward, the plan doesn't change. It's all about standing, standing, standing! We've already made small, but not insignificant, progress in both Bertrand's standing and weight-loss. Bertrand never ceases to inspire and amaze me. :)

March 15, 2011

National Walk for Epilepsy

At 38 weeks pregnant, I'll be unable to travel, but Bertrand will be at the walk in spirit!

Bertrand represented by an Elmo-red butterfly on the Team Doose banner!

UPDATE: Bertrand is now a virtual walker! His fundraising page is HERE.

The National Walk for Epilepsy takes place next Sunday, March 27, 2011. Many of our dear friends will be in Washington D.C. at the event, walking on behalf of Bertrand and all the other children afflicted by a form of intractable epilepsy called Doose Syndrome (a.k.a. Myoclonic Astatic Epilepsy). Please read what my friend Elizabeth has to say below, and consider donating $5, or whatever you can spare, in the name of Team Doose to help find a cure for our children! Thanks!
Before my child got sick, I knew nothing about epilepsy. This is quite sad, considering that I was a Special Education teacher and had several children who dealt with seizures come through my classroom. I did not know that several women I have always respected have battled epilepsy for years. I did not understand the struggles a good friend faces, every day, because his child has epilepsy. For whatever reason, this disorder is not often discussed. I believe, or hope, that there is a cure in the near future. I also believe that if this disorder were more openly discussed, a cure would come sooner.My daughter, Stella, has Doose Syndrome, also known as Myoclonic Astatic Epilepsy. Her first seizure was on March 24, 2009, and was accompanied by a fever. We were told not to worry - it happens all the time. She had just turned 3. By the beginning of May she had had hundreds of seizures. We had tried 9 anti-epileptic drugs, all of which failed her. There is no way to describe the fear and heartbreak a parent feels when watching their child seize. The paralyzing horror of realizing that I could not help my child, that there really are such things as monsters and I couldn't keep her safe from them, has changed something deep inside of me. In less than 10 weeks Stella lost her ability to talk, sit up and walk. The doctors here in New Orleans were at a loss, and began to look at several neurodegenerative and terminal diseases. We were told to take her home and wait if we thought we could handle it. We were only home a few days before Stella lost her ability to swallow and we had to return to the hospital. Stella was given an emergency IV dose of a very potent steroid, Solumedrol, over the next 5 days. She began to improve immediately. On the fifth and final day of the steroid treatment we flew her from New Orleans to Chicago to see Dr. Douglas Nordli, or as I like to call him 'The Greatest Man on Earth'. Dr. Nordli diagnosed her with Doose and told us that her condition had escalated at such an alarming rate because she, like many other Doosie Goosies, was having paradoxical seizures due to the anti-epileptic drugs that she was taking. He suggested that Stella be admitted into the hospital in Chicago in order to initiate the Ketogenic Diet. We jumped at the opportunity. Once Stella was safely in ketosis, we began the long, slow process of weaning the many medicines she was taking at that time. Stella is currently both seizure and medication free. She is still on the Ketogenic Diet. The strength and spirit of this little girl knows no bounds. She is walking, talking, running and spending an incredible amount of time in 'time-out'. We are a very fortunate. We are in the process of healing. Epilepsy is a family affair. Participating in this walk is one of the many steps we will take. Please help us spread awareness about this disorder that effects so many. Thank you, Elizabeth

March 12, 2011

Just the three of us.

Bertrand concentrates on Elmo while he stands.
Appropriately wearing his Duke Blue Devils t-shirt.

The reality of another child has finally started to sink-in as we head into the 37th week of pregnancy. Technically "full term", Victoria Elizabeth could be joining us any day now.

(Although, her Daddy has sternly warned her to stay put until after his deadlines this month.)

This has us savoring our last bit of time with Bertrand as an only child. In fact, with all the family we have coming to visit and help, today is the very last day with just the three of us!

We commemorated the day with lots of cuddles, a brunch out, a walk with the dogs, lots of favorite books, "Elmo's World" in the stander, and... the KidWalk gait trainer.

Since we're emphasizing weight-bearing (and, to some extent, calorie burning) exercises with Bertrand, I dusted-off & adjusted Bertrand's KidWalk, simply hoping he wouldn't fuss much.

Much to my surprise, he didn't fuss. In fact, he started taking steps when the KidWalk was pushed! And, he smiled non-stop when he realized that his steps were powering Mama and Daddy's cheers! He is turning into quite the little ham. :) (I promise to take some video.)

A seizure cut the KidWalk session short at about 10 minutes, but we have high hopes that it will become a loved component of Bertrand's daily routine.

Bertrand's seizures are not fully controlled, but I take heart in the fact that I've been cheering him on for 3 years and his seizures are finally reduced enough that he knows it!

March 10, 2011

Follow Through.

Bertrand shows-off his new haircut!

Bertrand had another ophthalmology follow-up appointment today. His eye infection is finally cleared-up! Both eyes look great, with the small exception of the scar on the cornea, occluding part of his pupil, left from the infection. We hope that the scar fades in the next 6 months. Bertrand will follow-up with the ophthalmologist in September, and we'll discuss options for remedying the corneal scarring then, if the situation merits it.

His doctor was exceedingly complimentary about how well Bertrand's eye actually looked. Apparently, he had expected a worse result? I always feel confused and uncomfortable when doctors, or people in general for that matter, compliment us on doing what we're supposed to do for our child. Did he really expect me to NOT put the eye drops in his eye?! Even if it was a fight every single time, every 2 hours, for about 3 weeks?

Bertrand is MY SON. I'd do anything for him, even if it is hard on the both of us. From wrestling antibiotic drops into his eyes, to driving him somewhere (school, doctors' appointments, or therapies) every single day of the week, to flying him across the globe for experimental procedures, to holding him down while someone injects a toxin into his muscle to treat spasticity, IF it is in Bertrand's best long-term interest.

Things that have long been in Bertrand's best interest are weight loss and weight bearing. Sure, plenty of things (steroids, broken bones, travel, etc.) got in the way, but the time for excuses has run out. There will always be excuses. We need to JUST DO IT. Visitors to the blog will see little boxes on the righthand side entitled "Weight Challenge" and "Stander Challenge". Weight will be logged on Mondays, and stander time will be logged daily.

Please wish us strength, perseverance and some luck!

March 8, 2011

Botox, phenol or surgery! Oh, my!

Bertrand slacks-off while Mama changes his sheets. ;)
His depakote dose was increased to 250mg today.

This morning, Bertrand had a fantastic occupational therapy session during which his therapist summarized that B's biggest improvement the past few weeks has been in attitude. He is happy, engaged, willing to initiate, not as prone to overstimulation, persistent and forgiving. He hasn't really had any motor breakthroughs yet but, thanks to his positive attitude, she feels certain that breakthroughs will come.

That was followed-up by an appointment with Bertrand's rehabilitation doctor. Bertrand's right hip is subluxated between 50 and 60%. This is due to spasticity in the right adductor muscle because Bertrand doesn't stand. (As the old saying goes: if you don't use it, you lose it.) If Bertrand ever wants to crawl, walk, use his right hip, or even just not be in pain, we need to keep it from further subluxation. This poses a parent dilemma.

To deal with the subluxation, we have to deal with the spasticity or end-up in surgery. The surgery is a major one with a substantial recovery time. The other standard options for dealing with spasticity are botox and/or phenol injections. We know many kids who successfully receive them. Each has their pros and cons. The doctor feels that phenol would be best in Bertrand's case. Both of these injections will hurt. Both will wear off.

[And, in large quantities, both have killed millions of people historically. *Shudder*]

Obviously, I don't want Bertrand to lose his option to walk or crawl someday, or to be in pain, or for him to undergo a major surgery (with a long recovery time) to fix a problem that could've been prevented less invasively, such as through an injection.

So, I made Bertrand's phenol injection appointment for Friday of next week.

But something just doesn't feel right--call it my mommy-spidey sense.

Bertrand's subluxation hasn't worsened in 6 months despite a broken leg.

I think I want to give therapy a chance to work first.

I want to give Bertrand, with his new can-do attitude, a chance to do something without another painful intervention.

I know this will take dedication from more than just me.

It will take Bertrand's Daddy, and his Titi Saby, and his Nana, and his therapists, and his team at school... but Bertrand deserves a trial period.

Bertrand sees his orthopedist again in July. He'll get new hip x-rays then. That means just 4 months to get him standing at least 2 hours a day and to keep that hip from getting worse.

I believe he can do it.

Am I crazy?

We'll see in 4 months.

March 7, 2011

A pleasant genetic appointment!

Bertrand takes his official ring bearer training VERY seriously!

Bertrand's "good news" roll continues! At today's genetic/metabolic follow-up, Bertrand was found to be "improved", much to the puzzlement and pleasure of his geneticist.

(I was over-the-moon when he declared Bertrand "stable" 6 months ago, so you can imagine my joy at hearing the word "improved"! And follow-up in TWELVE whole months!)

We discussed additional genetic testing, but decided to wait as these tests would be subsumed by the results from Bertrand's full genome sequencing being done at Duke University.

Given that Bertrand has responded well to treatment, a battery of blood tests were drawn to identify new treatment options such as supplements and hormone therapies.

Fortunately, these are not an option for Bertrand because all of his hormone blood levels have been found within NORMAL range! Including Bertrand's AFP for the first time!
  • AFP 6.5 (normal range: 0-15)
  • Vitamin D 80 (normal range: 30-80)
  • Prolactin 15.1 (normal range: 1-16)
  • TSH 2.40 (normal range: 0.7-6)
  • Free T4 1.18 (normal range: 0.7-2.4)
  • Cortisol 10.6 (normal range: 1-23)
  • ACTH*
  • IGF 1*
  • IGF-BP3*
(* Signifies a pending result.)

Bertrand's weight, however, was NOT in normal range. At 39 lbs. 10 oz. he is obese, and he has to be about 10 lbs. lighter! Bertrand needs a weight loss regimen, so the dietitian, food diary, gram scale, and calorie counting are baaaaaack.

(I had a talk with Bertrand regarding the merits of crawling, because I hear that weight just flies off kids once they do, and then Mama won't have to limit his food. I'd like to believe he is taking my suggestion under consideration.)

March 6, 2011

A recovery weekend.

One of the countless times Bertrand's nose bled this weekend.

Bertrand had a rough time recovering from Thursday's sedation. It's the first time he has ever had side-effects coming out of general anesthesia in the 10+ times he has been under. The anesthesiologist gave him some different drugs toward the end of the procedure, but they didn't agree with him. (This was a different anesthesiologist than the other 2 we've gotten at Primary Children's. I want to make note of the 2 drugs so Bertrand never gets them again in the future!)

Bertrand was extremely groggy, nauseated and sore for the past few days. He vomited a few times on Thursday, but harder to witness were his repeated nose bleeds on the following days. (These could've been caused or aggravated by the EGD.) I've lost track of the number of times I have changed/washed his sheets. A combination of humidifiers, motrin, ayr saline gel, books, Elmo and snuggles helped keep my poor baby comfy. Thankfully, this evening Bertrand finally seemed back to normal.

March 4, 2011

Got an old laptop? Give it to a special needs child!

Bertrand plays with his iPad for the first time, last year.

Our friends over at Marissa's Bunny recently started a foundation to provide assistive technology to special needs kids. The nature of this non-profit was inspired in part by the revolution sparked by the iPad in the special needs community. While not covered by most medical insurance companies, the iPad has provided new, low-cost possibilities for communication, therapy and entertainment to special needs children like Bertrand.

Bertrand was lucky to get his iPad--which he loves--within weeks of the initial launch, but other kids aren't as lucky. In fact, many special needs families spend so much money on therapy, medication, co-pays, nursing, etc. that there is tough time putting food on the table! There isn't a computer in the household, much less an iPad.

So, please read Marissa's Dad's plea below for your old computers. It's a great cause and a great way to get a jump on spring cleaning! Realistically, you aren't going to fix that old laptop anyway and your wife will thank you for the extra closet/basement space! ;)
...First of all, the special needs iPad giveaway isn’t closed, just the xBox/PS3 one. We’re going to keep collecting application letters until about the 18th of March. When you write your letters, think about what kind of info you’d want if you were doing this giveaway. Please, please tell your friends, your co-bloggers, your acquaintances. Anybody who has to deal with the challenges of special needs living- please tell them to share with me their story and why they need an iPad for therapy and/or care. What are the odds of you getting one? I really can’t say- we do have a review process, and (at this time) the top 40 candidates are being submitted to my management. They’ll decide the top 20. Of course, if the fundraiser keeps escalating, there’ll be more to give.

Along the way, we’ve stumbled into a bit of a dilemma. Step one in the ipad activation process is “hook the iPad up to a computer with iTunes installed.” Given the nature of the iPad, there tends to be a fair amount of private information shuffled back and forth from the computer to the iPad over time. This pretty much necessitates regular, secure use of a computer. A nonzero number of entrants don’t have a computer for whatever the reason, and will need one to fully utilize the iPad.

We’re not fully running yet, but I’ve spoken with the lawyers, and we can do something. We can take your old technology (to a point), repair and clean it up, and give it away as well. Here’s what we ask:

- Email us, tell us what you’ve got. We’ll give you an estimate of what it’s worth and what we’ll put on your charitable donation form, if you require one.
- If Windows compatible, please be newer than 4 years old
- If Macintosh, please be 1 gigahertz G4 or faster. No liquid cooled machines, please!
- Doesn’t have to be functional, but shouldn’t be trash.
- Totally reformat the drive. No OS, no nothing. If you need secure deletion, we can do this for you. Another option is you removing the hard drive yourself.

You’ll have to pick up shipping to us (for now), but we’ll consider this in the tax receipt. We’re local to Washington DC, so if you’re close, we can work something out to save everybody on shipping. We will either evaluate what’s sent and fix what’s broken ourselves, or contract this out. When the equipment is evaluated in person in our workshop/basement, we’ll issue the tax deductible receipt for the hardware. We’ll make our best guess on receipt value on your initial email, but the actual value you receive will vary depending on arriving condition. The more functional the state it arrives in, the higher the value on the receipt.

We’ll take lots of things. Old iPods. CPUs. Laptops. Parts. LCDs. First generation iPads if you’re going to upgrade to a 2nd generation unit. This is not an all-inclusive list. The more something costs to repair to operational status, the smaller your receipt for tax deductions will be. We won’t take CRTs or printers. Again,
shoot us an email with any and all questions. I know it’s arduous for machines to be only X old and not X+1 old, but we can’t afford to take machines that will make life harder for the recipients, not easier.

I’ll be honest. We won’t be able to fix everything, but unfixable machines can still be a source of valuable repair parts. There’s no reason we can’t clean out our collective closets at the same time as helping those in need!

If you’re reading this, you’re a special needs parent yourself and/or you have a closet of tech clutter. Let’s spread this out a bit!

March 3, 2011

A good news day!

Bertrand calmly reads books with his Nana while waiting on the anesthesiologist.

Bertrand has been on the longest streak of good--or at least "not bad"--news that he's ever had! I've been "knocking on wood" all day. Thursday's procedures started with the easiest time Bertrand has ever spent NPO (Nil Per Os meaning without oral food and fluids). He went into sedation without any tantrums or issues.

His "dental restoration" consisted of x-rays, a cleaning, and getting his molars sealed. According to the dentist his teeth actually look great for a special needs kid! There was zero sign of nerve damage! In the future, any time that Bertrand is put under anesthesia, the dentist recommends another thorough dental exam and cleaning.

His esophagogastroduodenoscopy (EGD) involved his gastroenterologist looking at his esophagus, stomach and part of the intestine along with a stomach biopsy. Everything looked "fantastic" according to the doctor (no ulcers or other visible damage) and the biopsy confirmed that everything is normal (no sign of celiac, allergies, or other issues)! Bertrand will stay on 15mg of prevacid for now and we will discuss removal again in a year.

Bertrand had blood drawn while he was sedated for his usual panels--Comprehensive Metabolic Panel (CMP) & Complete Blood Count (CBC)--along with his Lamictal and Depakote levels. His CMP showed that... *drum roll* ALT was 72 (normal range 5-45) and AST was 58 (normal range 20-60)!!! Both of these values are the lowest Bertrand's liver values have EVER been and the AST is now in the NORMAL RANGE! Yippee!

Bertrand gets the CBC drawn mainly as a way of checking his platelets--if the liver isn't functioning well then platelet counts drop and one experiences difficulties clotting. Well, the test was invalid because his sample clotted, so I think that answers the question.

The last results to come in were the medication levels. Bertrand's lamictal levels still aren't back, but his depakote level was 28.3mcg/mL. Effective range for depakote is 50-125mcg/mL, which means that the depakote in his system (a dose of 125mg once a day) isn't high enough to see any effect yet! This is good news because we hadn't really seen any changes in him--seizures, mood, or otherwise--while on the depakote. We're keeping our fingers crossed to see what upping his depakote to 250mg per day does next week!

I hope the "good news" streak continues for Bertrand's genetics appointment on Monday! :)