December 31, 2010

2010 Year End Review

Fern (my cousin), Bertrand, me, Matthew, Belinda and Aury (my sisters).

We are currently busy in Florida with several family events (such as my aunt's wedding, pictured above), but I just had to check-in one more time for 2010. :)

Closing out the year, I feel like our family is staggering across a metaphorical finish line. Any year that starts with your child having brand new seizure types on the very first day is bound to put you through the wringer.

Borrowing the idea from my friend Fawn, here is a representative post for each month of 2010:


Re-reading all the 2010 posts this morning was quite the effort. And honestly, I was too disheartended, exhausted and sick for most of the year to write regularly. Much of the really hard stuff was left out. Hopefully, 2011 will bring positive changes to our family as well as many of our friends.

We're wishing you all much love, happiness and peace in the new year!

December 23, 2010

Holiday Update

Bertrand is cuddled by his 1st Lt. Uncle John during a post-lunch nap.

Our family is spending the first half of this holiday season in Park City, Utah at Bertrand's grandparents' new house. Bertrand is enjoying every moment! He is clearly a winter sports guy if those sports include: being pulled in a sled, hiking via kelty backpack, and sitting by the fireplace. Oh wait, that last one is *my* winter sport! ;)

It's been a relief having extra pairs of hands and eyes around to care for Bertrand. The introduction of a new seizure medication, Lamictal, had me particularly worried due to potentially fatal side-effects such as Stevens-Johnson syndrome and liver failure.

However, so far Bertrand is doing great! In less than a week on Lamictal, all of his seizure-types have seen significant reductions. For example, his atonic seizures were down to 2 yesterday from 30+ daily a week ago. (Today, he hasn't had any! Knock on wood.)

Even more telling than the number of clinical seizures (since so many of his are sub-clinical) is the eye-contact, the number of smiles and daily laughter! We couldn't have received a more beautiful and perfect gift than hearing our son's joy manifest itself!

Lamictal is a drug with a long half-life, so we are no where close to seeing its full effect. Bertrand is on day 6 of taking a 25mg orally disintegrating tablet (ODT). His final dose of 100mg will be reached mid-January, and full effects won't be seen until early February.

Potentially complicating this titration are several factors: upcoming travel, hospitalization, potential sickness, changes in school/therapy schedules, and a wean from zonegran. Timing the wean from zonegran--should we start in February? or start next week?--consumes my brain.

Bertrand stands to gain as much as 6 hours of consciousness back each day since that drug has made him so sleepy without contributing any additional seizure control. But, in November, reducing the amount by 25mg caused a temporary increase in seizures while his body adjusted.

The scientist in me has no doubt that we should hold off on the wean until we can hold other factors as stable as possible. The mother in me simply wants her baby to stop suffering from the drug's awful side-effects as soon and as safely as possible. Can there be compromise?

On the non-pharmaceutical front, Bertrand will be alternating occupational and physical therapy at Shriners Hospital every Tuesday, starting the 2nd week of January when we return from Cleveland Clinic. And speaking of Cleveland, these are the updates to B's team there.

December 17, 2010

What will 2011 be like?

The ornament Bertrand made for us at school! Yay for popsicle sticks!

Today was an administrative day. I began addressing the logistics of our end-of-year travel to Florida and Ohio--such as completing inventory & ordering of necessary medication, ketocal and other supplies. I finalized Lamictal titration and Zonegran wean schedules, as well as picked-up the long-awaited Lamictal. (Bertrand starts the $630/month drug tomorrow.)

This morning, Bertrand was also evaluated for occupational therapy services at Shriners Hospital. The session went really well! He'll be recommencing with physical, occupational and speech therapies there in January, since he aged-out of Early Intervention.

Our 2011 calendar, which once seemed so empty, is already packed. Bertrand will be attending preschool for fewer days next year--only Mondays and Wednesdays--and he won't be receiving EI services, but we've already filled the gaps. The therapies at Shriners were the last pieces of the puzzle.

Bertrand's "extracurriculars" will also include "Dance Class" (the dancers with disabilties class at the University of Utah's Virginia Tanner Dance Program) on Tuesdays and "Horseback Riding" (hippotherapy at the National Ability Center) on either Mondays or Wednesdays, and a possible reintroduction to the MOMS Club playgroup on whatever day is left.

That's one busy, little man!

December 15, 2010

Home for the holidays!

Bertrand and his Uncle John being all manly together.

Today, Bertrand's uncle John (Booj) arrived home from Afghanistan! The 1st Lieutenant is on leave from the war for two weeks and will be driving up to see us this weekend. We couldn't be more excited! Bertrand in particular is looking forward to his hero's visit. Uncle John said, "I hope your belly's ready, B, because I'm givin' you the motorboatin' of a life time." ;)

We are so proud of you, John, and all the other wonderful servicemen and women serving our country! THANK YOU!

December 13, 2010

Cleveland Clinic, here we come!

Picture from OneMedPlace

Bertrand will FINALLY be seen at the Cleveland Clinic! Cleveland Clinic's neurology program is currently ranked #1 in the US. (Coincidentally, it also performs the highest number of pediatric epilepsy surgeries in the US--not that Bertrand is a candidate.)

We'll arrive on January 2. Bertrand will be admitted on January 3rd. And, we should be home by January 7th. Among the specialists Bertrand will see are Drs. Ajay Gupta and Sumit Parikh. Dr. Gupta is an epileptologist and Dr. Parikh is a neurometabolic/neurogenetic specialist.

We don't expect a diagnosis or, realistically, even treatment. (At best we can address his seizures but not the underlying condition causing his white matter loss, liver and nerve damage.) We're just confirming that we've done everything we can for Bertrand and hoping to improve his quality of life.

December 9, 2010

THREE! And counting...

Bertrand celebrated his THIRD BIRTHDAY today!

He had an Elmo cupcake pull-apart for his birthday celebration at school.

The class enjoyed cupcakes and apple juice while the birthday King took an I-am-ignoring-you-all snooze.

Bertrand was happy to come home to find wrapped presents and a yummy lunch.

For dinner, Bertrand got a special birthday treat: carrot cake flavored, low carb, dairy blend. The not-so-special treat was having to listen to his dad, mama and aunt sing "happy birthday". (Bertrand's hearing may never be the same again.)

Bertrand really enjoyed his birthday "cake".

Bertrand received LOTS of presents (in spite of mom's pleas for "no gifts!") thereby continuing his transformation into "most spoiled boy on the planet".

Bertrand attempted to open a present for the first time! This was very emotional for all!

Bertrand was also FLOODED with birthday well-wishes and love from across the world: mail, email, twitter, phone, text message, facebook message, skype, visits, and more!
It has become clear to us that our son is LOVED by more people than we knew.
And that in his short life, he has touched more lives than many people do their entire lives.
He really is special!

Happy birthday, B! We love you!

December 8, 2010

Individualized Education Plan

Bertrand's Individualized Education Plan (IEP) was completed and signed only one day prior to his 3rd birthday! Since we've gotten a wide range of questions from "What is an IEP?" to "What is in Bertrand's IEP?" I'll give the Cristina-fied version of what an IEP is and what our experience was with Bertrand's.

The Individuals with Disabilities Education Act (IDEA 2004) made parents of kids with special needs members of their child's education team. Parents work with educators to develop a plan--the individualized education plan (IEP)--to help their kids succeed in the public school system. So, the IEP is simply a document that describes the goals the team sets for a child during the school year, as well as any special support needed to help achieve them.

IEP meetings must be held at least annually, but may be held more often if needed. Parents may request a review or revision of the IEP at any time. It is worth noting that federal regulations do not require states to provide an "ideal" educational program or a program the parents may feel is "best." The state must provide an appropriate educational program, one that simply meets the needs of the individual student.

Going into Bertrand's IEP, my anxiety was ratcheted up to HIGH because of this last point. Endless amounts of parental anguish can be found online due to a divergence of opinion between the school district and the parents on what is "appropriate" for their child. My anxiety was unfounded. Matthew and I came out of the meeting with a strong sense of support and understanding from the people who'll be working with Bertrand. Furthermore, we felt that the goals and support outlined in the IEP document (and Health Plan) were appropriate.

Summary of Bertrand's "Team Evaluation Summary Report":

Primary Disability Considered: Multiple Disabilities
Definition: Concomitant impairments (such as intellectual disability--blindness: intellectual disability--orthopedic impairment, etc.) that affect a student's education performance. The combination of which causes such severe educational needs that they cannot be accomodated in special education programs solely for one of the impairments. The term does not include deaf/blindness.

Assessment for Classification
Bertrand qualifies for the "multiple disabilities" classification under all following 6 criteria: intellectual ability, assistive/augmentative communication and motor systems, sensory/motor skills, vision & hearing, additional assessments by the team, medical history

Areas of Evaluation
Cognitive: Battelle Developmental Inventory 11/12/10 - Percentile 0.2
Adaptive: Battelle Developmental Inventory 11/12/10 - Percentile 0.1
Communication: Battelle Developmental Inventory 11/12/10 - Percentile 0.1
Hearing: Normal peripheral hearing
Vision: Cortical visual impairment
Motor: Battelle Developmental Inventory 11/12/10 - Percentile 0.1
Medical: Bertrand has a vast medical history. Health Care Plan to be developed.

Bertrand has a disability, as defined by the Individuals with Disabilities Education Act (IDEA), that adversely affects educational performance and requires special education and related services.

Summary of Bertrand's "Individualized Education Plan":

1. Student Information

2. Present Levels of Academic Achievement and Functional Performance
This is a LONG summary going into detail on Bertrand's Battelle Developmental Inventory scores, medical records, therapist notes, and parent statements. I am too lazy to type it out. Suffice to say that Bertrand has "complex health issues" and is severely globally delayed.

3. The IEP Team considered the following Special Factors:
  • Bertrand has special communication service needs such as a student who is deaf or hard of hearing.
  • Bertrand needs for special communication services are addressed in his IEP.
  • Bertrand needs assistive technology devices and/or services without which he would not benefit from special education.
  • Bertrand's needs for assistive technology devices and/or services are addressed in his IEP.
4. Measurable Annual Goals
  • Annual Goal 1: Bertrand will use eye gaze with an adult in the classroom to indicate turning the pages in a book or continuing a preferred activity or toy.
  • Annual Goal 2: Bertrand will stay alert for 5-7 minutes during group activities.
  • Annual Goal 3: Bertrand will tolerate a variety of textures and various sitting positions throughout the school day.
  • Annual Goal 4: Bertrand will demonstrate anticipation of upcoming events when presented with a touch cue.
  • Annual Goal 5: Bertrand will indicate a choice among two preferred items.
  • Annual Goal 6: Bertrand will use a switch to activate a toy consistently within the classroom.
5. Services plus Adaptation Support
  • Special Ed. Preschool - 150 minutes 2 times/wk
  • Speech Services - 30 minutes weekly
  • Occupational Therapy - 30 minutes monthly
  • Physical Therapy - 30 minutes monthly
  • Visional Services - 30 minutes monthly
A registered nurse will assist Bertrand in class through Spring in order to train his teacher and her aides in seizure identification, treatment, handling, etc.

6. Participation in State & District Assessment (N/A)

7. Notices & Participants
  • Eligibility for Extended School Year (ESY) services will be determined later.
  • Parent Prior Notice for Free Appropriate Public Education.
  • Medicaid Consent

December 7, 2010

While Bertrand is at school

Bertrand's 2010 class photo. Love it! This expression is SO Bertrand! :)

If he isn't sick, seizing--too badly--or suffering from broken bones, Monday through Thursday, 8am until 11am, Bertrand can be found at the WONDERFUL Carmen. B. Pingree Center's Clinic Program.** Our family loves the program, the facilities, and most of all the staff there! They have worked wonders with Bertrand by augmenting the therapy and work I do with him at home. In particular, much of the social development Bertrand has experienced since February can be attributed to them.

That said, having Bertrand in the program also gives me an uninterrupted 2.5 hours to work or run errands. It's been a sanity saver. Here is a quick rundown of what those precious hours were like this morning:

  • Eat breakfast
  • Read medical section of newspaper (today: food allergies in children)
  • Load/run dishwasher
  • Upload and edit Bertrand's school photo
  • Order prints of photos from
  • Call Shriners physical therapy department
  • Call Bertrand's orthopaedist for new therapy orders
  • Call Shriners to schedule orthopaedic follow-up
  • Call PCMC to schedule gastroenterology follow-up
  • Email volley with Matt regarding American Express statement
  • Receive, read and edit Bertrand's Classroom Health Care Plan
  • Send Health Care Plan revisions/updates to SL County School Nurse
  • Finalize documents to be taken in for IEP meeting tomorrow
  • Schedule orthopaedic follow-up for January 11th
  • Call Shriners to confirm wheelchair order execution
  • Confirm that wheelchair order sent with insurance
  • File EI graduation paperwork
  • Confirm email receipt with Shriners

I know I've forgotten a few more items. But, all this was sprinkled with tweets, facebook and email replies while I was on hold (holiday muzak is the worst), random swiffering of kitchen floors, clorox wiping countertops, and, oh yes, repeated door openings for indecisive, barky, little dogs.

Best part? As I was running out the door to pick-up Bertrand, I told Matthew, "I don't know where my morning has gone. I've done nothing but I'm already exhausted."

**Please email me if you ever want an exceptionally biased and positive review of the program.

December 6, 2010

Graduation from Early Intervention

Not impressed with the certificate or stuffed bear, Bertrand would prefer that his therapists keep visiting him.

Today, Bertrand "graduated" from Early Intervention (EI). EI has been a part of our lives practically since moving to Utah: about August 2008. Bertrand's EI team consisted of four wonderful, talented and compassionate women who'd each come to our house twice a month--rain, snow or shine. They came under the auspices of providing therapy services (physical, speech, occupational and vision) for Bertrand, but honestly they did just as much for me. I know I should be celebrating that my boy is turning 3 years-old, but I am going to miss Kirsten, Meghan, Lisa and Linda. And, so will Bertrand.

Ladies, we love you. Thank you for all you've done for Bertrand and for our family!

December 5, 2010

Another Drug

Pictured above is Bertrand's current "breakfast". (Missing from the picture are miralax and phlexyvits, but Daddy took the picture, not me.) It seems like we can never add just ONE item without requiring several more. In fact, more than half the stuff in the picture is needed because of a problem caused by some other item in the picture (e.g., keppra binds with B6, zonegran causes stomach ulcers, the ketogenic diet is low in vitamins and causes constipation, etc.).

This is actually not a lot of medication compared to some other kids we know, but it is still more than Daddy and I would like for Bertrand. That's why I cringe at the thought of adding another medication. But, that's the point we are at with Bertrand's seizure management. Bertrand's seizures, particularly the atonic (drop) seizures, have gotten much worse. We would be adding a new seizure medication in the hope of reducing this number and to be allowed to wean another medication that is not working. (Zonegran has provided no seizure relief but plenty of nasty side-effects.)

So, at Bertrand's neurology appointment last Thursday, the neurologist laid out three medication options: Valproic Acid (Depakote), Topiramate (Topamax), and Lamotrigine (Lamictal). These three drugs are metabolized in the liver, and up to this point we've shied away from putting any additional stress on that particular organ. Liver damage and liver failure are not topics doctors or parents take lightly! However, according to Bertrand's gastroenterologist, the current state of Bertrand's liver damage and treatment is stable. Since Bertrand's quality of life is suffering significantly, we can proceed with hefty doses of caution (extra blood draws, constant monitoring, etc.). After all, a liver doesn't do you much good without a brain--and vice versa. Striking a balance is important.
  • Depakote: Used for generalized convulsions and absence seizures. Fast results. Side-effects include liver failure, stomachaches, increased appetite, weight gain, change in personality, irritability, tremor, hair loss, decrease in platelets, Stevens-Johnson Syndrome (allergic rash), and tiredness.
  • Topamax: Used for several seizure types including partial seizures. Moderately fast results. Side-effects include tiredness (hence the nickname Dopamax), irritability, language problems, behavioral problems, decreased appetite, weight loss, dizziness, kidney stones, acute glaucoma, decreased sweating. (Effects made more severe in conjunction with ketogenic diet.)
  • Lamictal: Used for several seizure types including partial and complex-partial seizures. Slower results. Side-effects include Stevens Johnson Syndrome, tiredness, dizziness, vomiting, ataxia.
The choice of medication was left up to us, Bertrand's parents. We are well-versed on the pros and cons to each one from the handouts given to us by the doctor and our own excessive research. We also reached out to our vast online network consisting of parents of children with intractable epilepsy and movement disorders. This was invaluable, but it was like drinking from a fire-hose until patterns started to emerge.

While it is the drug our neurologist has the least experience with, we feel that Lamictal is a conservative first choice. In comparison, Depakote's liver risk is just too high and Topamax's cognitive effects too severe. The greatest concern with Lamictal is an allergic response called Stevens-Johnson Syndrome, which is addressed through a slow introduction. (This is why results are seen much later than with the other drugs.) But, liver involvement is minimal, it is used with success by kids with multiple seizure types and, in particular, complex partial seizures (some of Bertrand's most insidious seizures). Furthermore, a child similar to Bertrand, with a movement disorder AND seizures, went seizure-free with Lamictal.

We have to start somewhere, so Lamictal it is.

December 4, 2010

Bertrand watches "How To Train Your Dragon"

For a change from his typical Elmo fare, Bertrand sat down to watch "How To Train Your Dragon". It is a DreamWorks production that came highly recommended from other special needs parents for its portrayal of disabilities. Several characters in the film, including the title dragon, have need of prosthetic limbs, but this doesn't define their characters or limit the greatness they are capable of. It's a cute movie and, as you can see from his youtube review above, Bertrand enjoyed it!

3 Month Post-Infusion Report

Starting early November, our family started to receive "gifts" that are possibly the courtesy of stem cells. This is the three month post-infusion report to Dr. Kurtzberg, who conducted Bertrand's autologous stem cell infusion at Duke University in late August 2010.

Hi Dr. Kurtzberg,

I've been putting off this email because I didn't want to "jinx" the small, positive changes Matthew, Bertrand's therapists, and I have seen in Bertrand. ;) Up to this point, there has been no change in his medication, therapy or other interventions (but he'll be starting a new AED next week because there has been an increase in seizures since his steroid wean). That said, here are some of the changes we've seen, starting early November.
  • Improved eye contact
  • More frequent vocalizations and greater range
  • Less extraneous movement (he feels more stable and calm)
  • Playing with new toys
  • Opening hands more (not as fisted) and will brace himself
  • Using fingers
  • Posture is more relaxed, with shoulder forward and arms down
  • Initiates trying to get up or change position
  • Can abdominal crunch to get into sitting position
  • Can wipe at his nose
  • Things such as a stuffy nose now bother him
  • Enjoys getting his hair brushed, being touched
  • Engaging in more stiming behavior - teeth grinding, rubbing textures, playing with things
We don't know if these changes were natural, the result of the infusion, or what, but we are grateful for them. I've spent over 2 years working with Bertrand, every single day, on improving his sitting and having his shoulders forward, to then one day have him spontaneously start doing it on his own?! It is fantastic!

Thanks and happy holidays!

"Santa, all I want..."

Bertrand tells Santa, "all I want is a sister who looks like Elmo and parents who don't make me sit for stupid photo-ops."

November 28, 2010

Happy Thanksgiving!

Happy belated thanksgiving from our family to yours!
We are forever grateful for all of you (online & off) who so selflessly support us!
We love you all! Happy holidays!

You see snow? I see no internet connectivity. ;)

The turkey weighed almost as much as Bertrand!

A toast to our family and friends, near and far!

November 16, 2010

My favorite day in pictures

This post is part of a blog carnival hosted by Ellen at "Love That Max"! The topic is "my favorite picture of my child", which I've had to modify to "my favorite day in pictures" because I couldn't pick just one! These were photos taken with my phone on September 1st 2008. The three of us had just moved to Salt Lake City in July and finally finished settling into our first house! Bertrand was only 8 (almost 9) months old. At the time, while Matthew and I accepted that Bertrand was a little delayed, we hadn't quite fallen down the medical rabbit hole that was to come. This beautiful September day was just me and Bertrand and not a care in the world.

I would caption the photos, but they got me a little too emotional. I don't look at these photos very often because it hurts. There is no way Bertrand and I could've enjoyed that day any more than we did. I'm not sure I could've enjoyed it as much, or at all, if I knew that it was likely the last time I'd see him play with his cars, lift his rubber ducky, put his hands to his mouth, attempt to crawl, mimic my silly faces, sit without falling over from a seizure...

Someday, I hope I can feel that happiness again when I look at these pictures.

November 14, 2010

A Big Change

Bertrand's expression upon hearing "it's a girl". Priceless. :)

Last week was eventful! My father came to visit us and was a keynote speaker at the Spectrum Academy's Autism Conference. Bertrand had his IEP evaluation and qualification meeting. (Everyone from the Salt Lake school district was great and, not surprisingly, Bertrand qualified.) Lastly, we learned that Bertrand will be a big brother to a SISTER due April 8th! Bertrand was a bit unimpressed by the ultrasound (see picture below) as his sister came no where close to resembling his favorite red monster, but mom and dad couldn't be happier. :)

November 9, 2010

Busy day, busy week, busy month.

Bertrand likes to show off his rolling, tracking and tummy time skills PLUS his open hands!

The subtitle for this post should read: Can Mama please take a nap? As Matthew mentioned in his last post (and as Bertrand's twitter followers know), October was quite busy for us. The month included but didn't limit itself to:
  • Basement flooding
  • House plumbing work
  • Cleveland Clinic registration
  • Hens' first eggs
  • Matthew's travel
  • Oktoberfest
  • Nana & Grandma visit
  • Vegas (parents-only) weekend
  • Blog World Expo 2010
  • Girls' Night Out with Niki & Erin
  • Flu shots
  • Wheelchair fitting
  • Minivan shopping
  • Disability parking placard
  • Preschool visitation
  • Nana & Papa's new UT house
  • Aunt Sabrina's new UT job
  • First snow
  • Halloween
  • And last, but not least, Bertrand's broken leg
There is a LOT of carryover into November from this list and quite a few new things being added. Therefore, even though I feel like I should backtrack a bit, plenty of these topics (in addition to more!) will get covered this month.

Bertrand and I will be sitting in on a Dancers with Disabilities class through the University of Utah Virginia Tanner Dance Program later this afternoon. But, weighing most on my mind are: tomorrow, seizures, and preschool. I'll cover tomorrow (surprise!) tomorrow and seizures on another (hopefully more eventful on that front?) day. For now, my main issue is preschool.

Bertrand turns 3 next month (ACK! I need to plan a birthday party, don't I?!). This is when he transitions out of Early Intervention and into the public school system through the means of a document called an Individualized Education Plan (IEP). Normally, Bertrand would enter a special ed public preschool in January. Unfortunately, this is not a course I am satisfied with after completing visits to several preschool programs.

Matthew and I were under the impression that school should be a means of gaining new skills--or at the very least, preventing the loss of them. Without going into too much detail or naming names, we didn't feel at least one of the preschools would achieve this goal for Bertrand. We are currently looking into private and hybrid public-private options for Bertrand. Unfortunately, trail blazing takes time and effort! Meaning, we now have to go through all of the steps for all of the options for schooling instead of taking an established route for just one.

Bertrand's IEP evaluation is this Friday. I hope to have more details then about the public option then. And next week, the team at Bertrand's current, private "preschool" is evaluating him and scheduling a parent meeting some time afterward to discuss Bertrand's progress. They'll let us know what options they feel are available for him at that time.

Fingers crossed!

November 5, 2010

Coming up for air

Bertrand being comforted by Puff, his toy dragon.

Since last Tuesday, Bertrand has had a small cold. He seems fine and chipper during the day, but in the early morning and late evening he is MISERABLE. His nose gets stuffy and he stays up (past midnight last night) thrashing in bed. I've tried the all the usuals (motrin, humidifier, distraction, vicks, etc.) but, since Daddy is out-of-town this week, I am quickly running out of steam and am getting sick now too.

That said, there are a lot of pluses to this situation.

(A) Bertrand's cold is running its course similar to one of his pre-steroid colds, so I think his immune system is getting back in gear--just in time for flu season!

(B) Bertrand's stuffy nose REALLY bothers him. Before, Bertrand used to act sick but had this inhuman ability to tolerate stuffy noses. Now he is MISERABLE just like any other kid his age (or adult my age) should be. I think this is progress!

(C) Bertrand is using his hands to wipe his nose!!! AND SUCCEEDING! Sure, it looks gross, but that is some great motor control!

Before, if we did anything to Bertrand's nose (wipe, bulb, etc.) and he tried to brush us off, he'd whap his eye, ear, forehead, cheek... pretty much every part except the part he was trying to hit. It was sad to watch, but boy did it make doing things, like wiping his nose, easy! Now I have to fight-off his little hand like every mom should. :)

There is probably plenty more I should say, but while B is still asleep, I may try to get that nap I've been meaning to take since Wednesday. :)

November 3, 2010

Ortho, Pediatrics & Neuro! Oh my!

Bertrand's femur.

Most of the time, I am shocked by how little is accomplished in one day. This morning, I was shocked by how much was accomplished in one hour.

8:00AM Orthopaedics
Bertrand got an x-ray and was seen by doctor Dr. Stephanie Holmes. (Out of the 4 orthopaedic doctors we've seen at Primary Children's Medical Center, Dr. Holmes is my favorite.) She cleared Bertrand's use of the stander (2+ hours, start slow), recommended some stretching, and mentioned permiginate IV as something we should discuss with B's pediatrician. Dr. H's thought is that the bone created with permiginate is more brittle, which may not be what we want as a part of Bertrand's issue is that he doesn't brace himself when he falls.

8:30AM Pediatrics (& Starbucks)
Bertrand's stuffy nose disappeared last night, so this was simply a paperwork run. Bertrand delivered several forms for his pediatrician to fill-out, including his Utah DMV Form TC-842 "Disabled Person And Physician Disability Certification" to apply for a disabled person's car plate or placard. That his disability is deemed "permanent" rather than "temporary" (yes, the doctor has to check a box) was a bit depressing for me, so that led to a pumpkin spice latte--the ultimate comfort drink--at the hospital Starbucks.

8:45AM Neurology
At the elevator we ran into Bertrand's neurologist. She didn't like the way Bertrand was looking or how tired he was. She asked after his genomic sequencing (results come January) and was unhappy to hear he'd suffered another break. She wants Bertrand to have a dexascan. Furthermore, she said she'd follow-up with her colleagues at Johns Hopkins to see who the best 2nd opinion on Bertrand's myoclonic-astatic-epilepsy (MAE / Doose Syndrome) would be, so she could write us a referral. In her opinion Bertrand isn't getting worse but he isn't improving. "When I run into my patients I think it's fate trying to tell me something."

Clearly, fate approved my Starbucks run. ;) I hope to hear from the neurologist soon, but if not, I foresee a follow-up email later today! In the meanwhile, I need a nap.

November 1, 2010

Dance Class for Bertrand?!

Studio room at Virginia Tanner.

This past weekend at a birthday party, a new friend mentioned a Dancers with Disabilities Dance Class through the Virginia Tanner Creative Dance Program at the University of Utah. (Up until this point, I'd though "Virginia Tanner" was a near mythical institution for dance prodigies in Utah for which you had to sign up at birth.) Understandably, I couldn't believe my ears! And then I couldn't believe my eyes once I was sent the class description**:
Creative movement classes designed especially for children with disabilities who, because of their unique challenges, may need special attention in order to fully enjoy the freedom of movement, creative self-expression and therapeutic benefits of dance.

Classes maintain a smaller student teacher ratio. For children who use a wheelchair or may need assistance in moving, dance partners (senior members of the Children’s Dance Theatre or other volunteers), are often available. Students are invited to participate in the annual Virginia Tanner Creative Dance Program spring show.

When I read this, I started to cry. I hadn't even realized that I'd given up on the possibility of Bertrand being able to do NORMAL extracurricular activities until this moment. I mean, he does Musikgarten and hippotherapy, but dance? when he can't crawl or walk? and a spring dance show?! The entire concept was moving (no pun intended)!

Since he is turning 3 this December, Bertrand can no longer attend Musikgarten because it is administered through Early Intervention in our state. Anyone who knows Bertrand knows how much he loves music. This dance class could be the perfect transition! Plus, I can finally fulfill the dream of being that glowing (read: annoying) parent sitting in the front row with camera, video recorder and an entire cheering section for my son!


** A typical class (one hour, once a week) for a child Bertrand's age at the Virginia Tanner Dance Program runs $222.00 for a semester and $422.00 for a year. The Dancers with Disabilities Class is only $25 a semester and $50 a year! Clearly someone realizes that medications, doctors' appointments, wheelchairs, etc. don't come cheap! But the opportunity to see your disabled child have fun and dance is priceless. :)

October 31, 2010

A moment of happiness

October has been a long month.

I (B's daddy) have been traveling a lot (since the middle of September). At the same time, Bertrand has been recovering from his broken leg and readjusting fully to the ketogenic diet.

It's been rough for him and for his mom.

She's been a saint and a superhero. That's all I can say.

Cristina and I were worried that October was going to be the first month without a single smile from Bertrand.

But, then, on Halloween, we heard giggles coming from his room.

We ran in and caught this:

As parents, we have never needed this more.

October 21, 2010

A Message from Cole's Mom: Paws To Help

We just wanted to remind everyone that our walk, "Paws To Help" is this Saturday at Liberty Park in Salt Lake City at 11:00 am. We have chosen to make this walk free, with no registration fee. It will be short, with a balloon release at the end. We will also have people from the Epilepsy Association of Utah there to answer any questions you might have. Come and support Cole and raise awareness for Dravet Syndrome and epilepsy. We are not sure that he can even come because the weather is predicting to be cold and he can not regulate his body temperature. Bring your sunglasses, and if you want, your dogs! If you want to donate, you can click on the link on our sidebar. It will take you to Cole's
fundraising page. This money will go directly to 4 Paws For Ability and is tax deductible. We are raising this money in their behalf to support their mission to provide service dogs to those with disabilities.

The other $2,000 that we are hoping to raise separately, is to go towards travel costs for the two weeks we will need to spend in Ohio for training. We are about half-way to our goal and want to thank all of you that have donated so far! It means so much to us, and to Cole. To learn more about why we want a service dog for Cole, you can go

October 1, 2010

Falling down

Bertrand took a tumble out of his high-chair and landed in the ER.

This lead to the world's strangest conversation:

Physician: "The CAT scan shows significantly enlarged ventricles, indicating brain damage."

Us: "OK, but what about his bones? Are there any breaks?"

Physician: "Um, his bones are fine."

In 30 years of emergency medicine, the ER doc had never seen a calmer response to the announcement of brain damage.

In more detail, the fall didn't cause the enlarged ventricles.

Actually, beyond bumps and bruises and panicked parents, the fall didn't do anything.

His ventricles (empty space in the brain) began enlarging as his white matter started disappearing about two years ago.

Unfortunately, they appear to be significantly enlarged from his last MRI in December.

Hopefully, with this new data point, we can start to measure life expectancy.

There are a few wildcards in the mix--like the stem cells and the steroids and the ACTH--but it appears we're not winning the war.

We'd been getting optimistic as of late.

We recently turned the tide on his liver damage. The ACTH stopped his seizures for almost two months, giving us a brief and unforgettable snapshot of a happy, loving baby boy.

But, it seems he's still losing white matter.

Clinically, this is consistent with our current hypothesis: male Rett syndrome from somatic mosaicism caused by a de novo mutation. (Somatic mosaicism means part of him is normal, part of him is a mutant; de novo means neither Cristina nor I are a carrier--it's a mutation unique to him.)

His next MRI will be more conclusive about the effects of our efforts, but today was a sober reminder that the clock is ticking.

September 28, 2010

Miss Manners and the Mobility Scooter

An hour ago, Bertrand and I were leaving an appointment when an interesting interchange took place. We were almost to the parking deck when I noticed a lady coming up behind us. I held the door open for her and narrated quietly to Bertrand, "we're holding the door open for a lady." I don't think she heard me but she proceeded to ram the door and said, "I can get it myself!" I turned to her, looking her in the eye, and said, "I was just teaching him that ladies go first. It's never too early to start teaching kids manners."

I moved to get out of the way, but turned as she started laughing--almost hysterically. With a huge grin on her face she told me, "that's very nice!" To which I responded, "I am from the South. No son of mine will forget his manners!***" She laughed and smiled all the way to her car. Which had my mind spinning. What was so freaking funny?! Lots of moms teach their kids manners! Was it that he appeared too young because he was in a stroller? Was it because she thought it could be sexist?

After I finished loading Bertrand and everything into the car, and as I settled into the driver's seat, I watched her drive past us with her scooter on the back of her car. And that's when it hit me! It was probably because she was in a scooter!!! (Oh yeah, I forgot to mention that this lady was using a mobility scooter.) It was a weird realization to me that I DIDN'T NOTICE HER SCOOTER. I am 5 foot 10 inches tall, people. I obviously looked down at her and I must've seen it, but it didn't register. It didn't occur to me as a reason for which Bertrand and I should treat her differently than any other lady.

I could give you a full description of her face and what shirt she was wearing, but I didn't notice the scooter until she drove off. And, maybe that was it?! Our actions weren't motivated by pity. After her initial overreaction, what apparently made her day: we'd seen her as a lady rather than a scooter.

As I pulled out of the parking lot, I was thinking to myself that this was probably a sign that I've spent WAY too much time up at Shriners Hospital... and then mentally smacked myself! NO! This is a sign that I have finally spent just ENOUGH time! EVERYONE should see the lady, not the scooter.


***Since Bertrand was born I've been gently brain-washing him in the manners and ways of the South. I figure that living in Utah is no excuse! Beyond the non-stop use of "please" and "thank you"--I thank Bertrand for everything from eating well to making peepee and always preface everything I ask of him with please--we go that extra southern step beyond. (1) We refer to all of his nurses, therapists, teachers as "Ms/Miss": Ms. Kirsten, Ms. Meghan, Ms. Michele. It is fused to their names. (2) We make sure to use "sir" and "ma'am" all the time. (No, I don't care how old you are. If you are older than Bertrand, you WILL be sired or ma'amed!) (3) Whether we are opening doors or entering/exiting elevators, ladies ALWAYS go first. Bertrand and I do not discriminate: young or old, girlie or punk, scooter or not. (4) Last but not least, we drink real sweet tea at home. :)

September 27, 2010

Wisdom from the Rolling Stones: A Mama's Meditation

This is a file from the Wikimedia Commons.

I was just speaking with my friend Karen, whose second little boy is Bertrand's age. Bertrand is sick again today and is missing school. So, somehow our conversation turned back to when we were pregnant with our boys. I couldn't help but reminisce:
  • How I'd stricken caffeine, lunch meats, sushi, and non-organic fruits and vegetables (such as peaches and peppers) from my diet.
  • How I'd refused to take pain medication or any drugs during pregnancy and post-partum.
  • How I'd planned on breastfeeding as long as I could and wearing him as much as I could.
  • How I'd been signing with him since birth.
  • How many books I'd read on everything from general pediatrics to elimination communication.
  • How we'd chosen to run additional tests such as the first trimester screen, to rule out three common genetic conditions.
  • How we'd done "everything right".
  • How I never knew more about parenthood than I did then! ;)
There is simply no doubt in my mind that having Bertrand in my life has made me an incredibly lucky mom and a much better person. My little zen master has taught me more about patience, compassion, humility, empathy, courage, and virtue than countless books or lifetimes ever could. I have by no means mastered these lessons but I feel like I am finally walking through life with eyes that are open for the first time.

I joked with Karen that, regardless, I would gladly be the same "horrible person" I was before if that would prevent Bertrand's suffering and grant him a full and happy life. :) Thankfully, that's not something I've dwelled on as my darling Mr. Perfect has taught me to find the beauty in living each day--one day at a time.

The illusion of control is one that is very important for people and, it seems in particular, for parents to maintain. Bertrand, far from making my life harder, has made it much easier for me to go through life because I now realize the only thing I am guaranteed control of in life is my own attitude. How appropriate is it then that the Rolling Stones were on the radio, when I turned it on, singing:
You can't always get what you want
You can't always get what you want
You can't always get what you want
But if you try sometimes well you just might find
You get what you need!

September 8, 2010

Pneumonia Scare 2.0

This morning Bertrand went in to see his pediatrician. This was the 3 month follow-up for his RSV/pneumonia/edema episode back in June. It was convenient timing since he'd already managed to pick-up a bug after only 2 days at preschool.

Honestly, we didn't go into the appointment thinking that much of Bertrand's condition--he just had a cold, right? Well, our pediatrician was a lot more concerned. From her examination, Bertrand sounded like he could have a little fluid in his lungs. Also, his breathing was labored and heart rate was elevated. She sent him in for chest x-rays.

What the radiologist found was some "stickiness" in his lungs. Bertrand's doctor is not sure if it is new (he is developing pneumonia) or if it is leftover from his RSV/pneumonia last June. He has to go back in to see her early next week. If he's not better by Monday, he gets another x-ray and he'll start oral antibiotics if it is pneumonia.

In the interim, if he starts to have labored breathing and needs oxygen again (we have to use the pulse-oximeter) we have to page her and take him in. She believes what he has right now is viral but could turn into a sinusitis or pneumonia very easily.

He was put on a stress dose of prednisone (15mg) and motrin. We have to roll Bertrand around and such while he is awake (since he is pretty sedentary) to keep stuff from settling in his lungs. Sadly, he can't go to school until he gets better.

I'm hoping the "stickiness" was leftover junk from his June hospital stay and Bertrand will be back and in learning form by Monday.

August 29, 2010

Post-Infusion Report

Bertrand receiving his stem cell infusion.

The past two weeks have been surprisingly easy for Bertrand, but tough on his mom and dad. Thanks to all of you who sent thoughts of love and support our way. We couldn't have done it without you. :) We apologize for the lack of an update following such a big event for Bertrand.

Bertrand underwent an autologous hematopoietic stem cell infusion on Tuesday, August 24 at Duke University. In other words, he was given stem cells from his very own umbilical cord blood collected at birth.

Umbilical cord blood consists primarily of red blood cells, white blood cells, platelets, plasma and there are a few hematopoietic stem cells in this mix (in Bertrand's case, a meager 160 million). When a child's cord blood is "banked", the processing center does its best to harvest and save the hematopoietic stem cells through centrifugation, which stratifies the cellular components. Dimethylsulfoxide (DMSO) is then slowly added as a cryoprotectant--a type of cellular antifreeze--and just the stem cells, with a few sneaky red blood cells and plasma, are frozen.

[NOTE: DMSO is the stuff which made Bertrand smell like creamed corn for over 24 hours after the infusion. It is also the reason why Bertrand's IV was first filled with benadryl and solu-medrol, a steroid. Around 1% of kids are allergic to DMSO and you don't find out until the infusion begins. To prevent an allergic reaction to DMSO from occurring during the infusion, patients are preventatively treated for allergic reaction. Which in Bertrand's case meant he slept through the entire thing!]

A bag full of hope: 160 million stem cells.

Why save just the stem cells***? They are the cells capable of differentiating into a diverse range of specialized cell types. And amazingly, they have a propensity to specialize and repair at an area of insult, such as an area of the brain damaged by oxygen depravation.

With Dr. Kurtzberg at the forefront, researchers have been studying this phenomena: that stem cells specialize when they reach areas of insult (injury) in the body--in particular the nervous system (spinal cord and brain). Our understanding of this mechanism is growing rapidly with advances in science, but there is a great deal left to learn, since it varies greatly by individual and injury. What this means, using cerebral palsy for example, is that two children with similar brain injuries can have vastly different outcomes.

Currently there are autologous stem cell infusion trials for cerebral palsy (now in phase 2 clinical trial), hydrocephalus and a general study. (Bertrand falls under the general study.) Dr. Kurtzberg at Duke University hopes that through the double blind trial now underway for cerebral palsy, we may soon learn more about the way autologous hematopoietic stem cells behave, and their effectiveness.

Even though study results haven't come out, one of Dr. K's pending studies speaks loudly to what results may look like. Researchers under Dr. K will be infusing young infants believed to have a predisposition for cerebral palsy (due to some kind of trauma etc. during gestation or birth) with autologous stem cells shortly after birth. Treating these infants proactively, if you will. Reading between the lines, I can see that researchers see a lot of promise in these stem cells and their behavior the earlier in development that they are infused.

Bertrand played and watched Elmo through IV placement and slept through the infusion! This was the easiest procedure he has ever had!

Back to Bertrand! Dr. K was very frank with us from the beginning that we should not expect much, or anything. She is still under the impression that Bertrand's case is an undetermined, inborn error of cellular metabolism and this is the cause of his ongoing brain damage. In such a case, Bertrand's infused stem cells would contain the same genetic error found in his existing cells, resulting in either no change or a temporary one. Bottom line, if we are going to see results, we will see them in three to six months. We won't know what form these results could take until/if we see them. Regardless, we have to email Bertrand's progress every 3 months and return for a follow-up exam at Duke in one year.

In April 2009 we made our first pilgrimage to see Dr. Kurtzberg at Duke - if she could diagnose and treat Bertrand's then assumed lysosomal storage disorder.
In September 2009 we returned to Dr. Kurtzberg as a follow-up and because Bertrand's neurological condition continued to deteriorate.
In August 2010, we simply infused Bertrand's with his umbilical cord stem cells because his condition had stabilized and it wouldn't hurt.


***With the prevalence of cancer in today's world it's shocking to me that all cord blood stem cells aren't systematically banked. When an individual with leukemia undergoes a bone marrow transplant, they are really receiving a stem cell transplant. The stem cells found in the bone marrow of a donor--hematopoietic stem cells, mesenchymal stem cells and endothelial stem cells--are transfused with the expectation that they'll go and take up residence where the patient's own bone marrow has been killed by radiation. However, the stem cells found in cord blood are considered superior to the ones found in adult bone marrow. Since the hematopoietic stem cells prevalent in cord are more primitive, when used in place of adult bone marrow stem cells, there is a lower incidence of Graft Versus Host Disease, easier HLA matching, and a host of other advantages. If you don't bank your child's cord blood PLEASE consider donating it to a public bank! Otherwise these life-saving stem cells are tossed away after birth as medical waste!

August 20, 2010

Why we support genetic research.

Life isn’t fair, but that doesn’t mean we should sit back and accept the injustice of it.

Throughout the quest for diagnosis and treatment over the past two years, I have come into contact with some of the world’s most loving and dedicated parents.

And, I’ve watched in horror as they watched their children, suffering from genetic diseases, slip away from even their tightest grasp.

When the worst came, I cried with them as their children died.

Since his inauspicious beginning, Bertrand has been though many potential diagnoses: brain damage, cancer, ataxia telangiectasia, lysosomal storage disorders, mitochondrial diseases, male Rett, Schinzel-Giedion, Lesch-Nyhan, a host of organic acidemias, and the list goes on. It’s not accurate to say I feel empathy for the parents for children with those diseases--I WAS the parent of a child with those diseases, if for a small time.

Bertrand has been studied by experts at the National Institutes of Health, Johns Hopkins, Duke, UNC, Baylor, and the University of Utah. He has been put through a battery of painful tests and treatments. Yet, his future is still uncertain because the precise genetic cause remains unknown.

Each time his diagnosis shifted or narrowed, I met a new set of children's faces that I'll never forget--to me, each of those children was Bertrand. I can’t forget the agony of their parents--it was my agony. Running the diagnostic gamut left so many marks on my soul... I want to do more than just save Bertrand. I want to save all the children he once was and all the children he could still be.

Bertrand's case, although medically unique, is sadly anything but unique in the special needs world. He was born to loving, healthy, young parents with diverse genetic backgrounds. He received the best prenatal care: vitamins, organic foods, frequent check-ups, no exposure to smoke, alcohol, or drugs of any kind. Every caution was taken, including a first trimester screen to rule out common genetic diseases. Ultrasounds at every trimester showed a healthy normal baby boy. Even at birth he scored perfectly on the APGAR.

That’s why I support genetic research. I am particularly excited about Rapid DNA sequencing--a vital tool for researchers discovering the cause of diseases as well as the researchers developing the gene therapy to treat them. Rapid DNA sequencing stands to benefit Bertrand and all other kids with rare and not-so-rare diseases.

Rapid DNA sequencing even stands to benefit me. It will be used in the very near future to warn of predispositions (thereby ensuring earlier screening and treatment) for conditions such as cancer, heart disease and stroke, all of which run in my family.

We ALL stand to benefit from the research enabled by rapid DNA sequencing, but it means the most to those facing life threatening conditions today.

If you haven’t already, please consider spreading the word about the importance of genetic research and consider donating to Bertrand’s Fund either directly or by purchasing a copy of The Illustrated Guide to a Ph.D. (all proceeds go to genetic research). Bertrand’s Fund supports genetic research being conducted at the Nobel-prize-winning Eccles Institute of Human Genetics at the University of Utah.

Life isn’t fair, but that doesn’t mean we should sit back and accept the injustice of it. Please support genetic research.

August 18, 2010

Gelastic seizures?

Bertrand has continued to get "foggier" as the effects of the steroids attenuate, and his seizures return.

We're also trying to figure out if he's having gelastic seizures.

These episodes seem to come at random, and I captured a couple on my cell phone camera.

Here's one in the hospital registration room:

Here's another one outside at Barbacoa:

What has us concerned is that there are no (obvious) triggers for these episodes.

He'll be sedate, or even a little bit grumpy, and then he bursts into these moments.

Is he genuinely happy? Or are there gelastic seizures?

Are we being paranoid?

August 16, 2010

Emily Dickinson: Poet, Recluse, Epileptic**?

Photograph by Jack Illingworth.
"Hope" is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—

And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—

I've heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.

Emily Dickinson

Emily Dickinson's words have inspired generations. In particular, the poem above seems to have struck a chord within the special needs community--perhaps because Emily Dickinson is one of us?

Known for her reclusiveness as much as her creativity, it was long thought that Ms. Dickinson suffered from mental illness. New research revealed in her biography Lives Like Loaded Guns: Emily Dickinson and Her Family's Feuds indicates that her condition was more neurologic than psychiatric. According to author Lyndall Gordon, the drugs prescribed to Ms. Dickinson were ones used at the time for epilepsy.

With the diagnosis of epilepsy, many strange aspects of Emily Dickinson's life tumble into coherence. Her reclusiveness transforms into the common fear of having a seizure in public. Her unmarried state is due to the stigma associated with seizures--in many states "epileptics" were forbidden by law to marry. Her white wardrobe and adherence to routine? An attempt to reduce overstimulation and resulting seizures. Even her creativity? Temporal lobe epilepsy has long been associated with creative genius.

This book doesn't focus solely on the poet's epilepsy; it includes the many familial struggles she faced. But, given the hurdles which individuals with epilepsy still face today, the beauty that Emily Dickinson managed find and create is made even more astounding.

Thanks to Lyndall Gordon's investigation, Emily Dickinson, who has long inspired us with her words, now inspires us with her life.

**Disclaimer: I am using the word "epileptic" here for historical accuracy and grammatical consistency. The term "epileptic" is no longer used, as individuals suffering from epilepsy are not defined by their condition. After all, no one refers to someone suffering from cancer as a cancerian, right? That said, as I've witnessed some spectacular showdowns over the use of the E-word, please don't crucify me!

August 13, 2010

Stem Cell Infusion Schedule!

Image from

Everything is officially a "go" for Bertrand's stem cell infusion! CBR, the company we stored Bertrand's cord blood with, has transferred his blood to Duke University and the Pediatric Stem Cell Transplant Program at Duke sent our schedule today (see below). We just bought our plane tickets! This infusion will likely do nothing for Bertrand but we have to try it given the successes there have been with other forms of brain injury.

It has been a pleasure talking you about your decision to come to Duke for Bertrand’s reinfusion of autologous banked cord blood cells. We look forward to see you all again. A schedule is listed below for Bertrand’s appointments here at Duke University Medical Center.

Monday, August 23, 2010

8:15am Please check Bertrand in at the McGovern-Davison Children’s Health Center (CHC), 4th Floor, which is our clinic. Bertrand will have vital signs taken, be weighed, measured, and have blood work drawn. The blood work will be drawn by a phlebotomist. The phlebotomist will attempt to collect the blood samples with minimal needle sticks. If the blood cannot be obtained by the phlebotomist, please have the phlebotomist see Colleen McLaughlin, Pediatric Nurse Practitioner, about obtaining the blood samples. Bertrand will also have a head circumference done (his head measured).

Colleen McLaughlin, Pediatric Nurse Practitioner, will take a detailed medical history and perform a physical exam on Bertrand as well as consent for his reinfusion.

Tuesday, August 24, 2010

12:15pm Please check Bertrand in at the McGovern-Davison Children’s Health Center (CHC), 4th Floor. Bertrand will be weighed, measured and have vital signs taken. After check in you are welcome to go to the gift shop located on the 1st floor of the CHC or the cafeteria in the main hospital for snacks. During this time Bertrand’s unit will be processed in our lab. There will be about an hour wait time for unit processing.

Bertrand will be seen by Dr. Kurtzberg after which time an IV will be placed by Dr. Kurtzberg so that Bertrand will be able to receive his cells. It is easier to start the IV, if you have made sure that Bertrand is well hydrated. Bertrand will be monitored in a room in the Valvano Day Hospital. You will be able to be with Bertrand the entire time. You may eat in Bertrand’ room if you wish. He will receive IV fluids for several hours after the reinfusion of cells. Bertrand will be seen by Dr. Kurtzberg prior to discharge.

Please bring Bertrand’ favorite toys to this appointment.

Wednesday, August 25, 2010

Please call Colleen McLaughlin at (919) 668-2657 to let her know how Bertrand did overnight. If all goes as anticipated you may return home.

We look forward to seeing you at Duke. Please have a safe trip to Durham.