When it rains it storms

My heart is aching as I write this. Indeed, Zoé's two grandfathers are leaving us and I grieve for Zoé's loss.

I will fill you in as soon as I find the strength to do so, in the meantime, enjoy Zoé's pix.

Nip and Tuck Season Finale

Well, we made it! Zoé blows my mind! she is such a trooper.

We left on Tuesday late afternoon, ate at a small cafe on the river in Sacramento, checked into our hotel. Unfortunately, Zoé sleeps so well at home, it is hard for her to adjust to a portable crib. We had a pretty difficult night and had to wake up at 4:30 am in order to be in the pre-op room by 5:30. Zoé was the surgeon's first case of the day.

Shriners is an amazing Children's Hospital, not your run of the mill kind of place, but a real kid-friendly medical center, where you don't feel that your child is a number. I guess that's why Joe, Dr. Rab's nurse greeted us there on our first visit by saying: "Welcome to the Shrine!".

After checking Zoé's vitals, we were escorted to the pre-op ward, where other kids we also waiting for their turn. The intern on Zoé's case came and introduced himself, then the anesthesiologist and his assistant explained exactly what medication they would definitely NOT use on Zoé, known as "muscle relaxant". They tend not to use them on kids, unless of an emergency procedure, and would definitely not use them on a child with a neuro-muscular disease.

The surgeon came in last, they administered Zoé some Valium, which I could have used myself, and whisked her away into the OR. We had brought her "doudou" Trotro (French term for comfy Blanket) and her little music box, and they took them in order to help Zoé's transition into a new place. Though Zoé's been through so much that another doctor or another place doesn't seem to bother her...of course, Valium probably helped her quite a bit.

We then had to wait in a waiting room, before seeing her after the surgery. We were greeted there by a volunteer, ex-doctor who explained why Sacramento is also called "Sack of potato" and funny stories that alleviated the stress we were both going through...

BACK FROM FRANCE 2 DAYS AGO. I AM NOW ABLE TO FINISH MY ACCOUNT OF ZOE'S SURGERY.

We then saw both surgeons and were told Zoé had done great. One parent was able to go into the recovery room and they told me that Zoé had asked for me. She was in a total state of what is called "emergence delirium". I have to admit I was quite freaked out, for she was screaming and nothing seemed to sooth her until they gave me a rocking chair, a video of Dora and a bottle with watered-down apple juice for Zoé. We stayed about an hour in the room and she was then ready to be transferred into her room two floors down.

She did great most of the afternoon, I spent the night on a cot in her room; we hadn't slept much the night before and were exhausted emotionally and physically.

That afternoon we went down to the play area where the Mayor of Sacramento came to read a story to the kids. We participated in a raffle and later on Zoé got to pet a beautiful dog (some animals -- rabbits, cats, dogs -- are often brought to Shriners to soothe kids. Zoé enjoyed Callie the Collie.

The following day, when we were ready to leave, Zoé got to meet Hare Bare the Clown. You can see a few clowns roaming the halls of Shriners they come and entertain children. Zoé first got completely freaked out when she saw the clown, I don't think she expected seeing such a sight, but I sang her our French clown song and she recovered quite nicely. She enjoyed the clown's hat with a little teddy bear on it...

The one amazing thing that happened at Shriners, and I like to add "only in America", they allowed Zoé to take her little Trotro donkey toy and her music box. What did I discover when I was rocking her after her surgery, they had casted Trotro too!!!!! Amazing. It has helped Zoé feel good about her cast, she and her fluffy toy both have one. Zoé likes to call her cast: "new shoe".

Well, I am sorry it has taken me so long to update you. I know some of you were worried, I would like to send a big hug to Gwen who even called from Mauritius to ask about Zoé. And all of you who had us in your thoughts and prayers.

The cast comes off next Tuesday. Suspense until then.

Zoé is now running with it, it is like the helmet, second skin.

Voila dear blog readers, until our next post we send our love

MDA Muscle Walk

MDA Muscle Walk

Pretty inspirational...

Life with a two-year-old

I think anyone will be able to relate to the title for this post...Haven't we all heard about the so-called "terrible twos", boy, I had no idea. It's probably the hardest thing I have ever done. Zoé is wonderful, a true wonder, an angel, an ebullient little person with her amazing personality and true passions as well as her great sense of humor.

Yet, she's also entered the phase of the terrible twos, with her testing the limits, saying no no no over and over again, her wish to always walk in the opposite direction, when we are going south and she has to go north...Even though she has her own special needs, she is a typical 2-year old!

I found a funny article dating back to the November 2005 issue of Parents magazine and its author describes how "just getting through the day with my son wipes me out. But the terrible twos can also be pretty terrific." I do have to agree with it, though sometimes, it is difficult.

This is how she describes the mom of a typical 2-year old, I love it!

Job description: Equal parts zoo keeping, nose-wiping, and debris management. Prefer candidates who relish reading the same book over and over, who enjoy being stared at in grocery stores, and who have at least three hands.

Salary: $0

Benefits: unlimited sticky kisses, full-contact hugging, and the satisfaction of knowing that every time your child bumps himself or catches a cold, only you can make it all better.

She goes on by saying that for her "it's been a mottled year of anguish, bliss, and introspection. Spending the day with a 2-year-old is like working for a cranky, hormonal, half-drunk boss."

I think we can all relate to it. I must admit that I sometimes lose my temper, and I've found a great way to alleviate the stress, I lock myself in the bathroom and brush my teeth...yes, we all need this one-minute reprieve to calm down. I have to admit, I don't know how moms do it with 2 or 3 kids, no downtime, etc.

I feel that ever since Zoé's been to daycare, I have become a better mom, with more energy, more patience, more creativity. But we all need this QT for ourselves. I don't even mention moms who work and juggle it all. Needless to say, having a child with special needs is like a full time job, with a regimented daily planner full of appointments, therapy sessions and support group meetings.

This week was one of those weeks where I had to drive down to Stanford, (45 minutes away) for Zoé to get confirmation on the surgery she is going to have done. But when I say driving it means: packing a bag with toys, snacks, diapers, bottles. the drive, the waiting 35 minutes in an over crowded waiting room, where all Zoé wants to do is explore and touch everything. It's then the actual appointment, when you now wait in an empty consultation room, and then it's the visit with the doctor. The drive back, the crankiness of being yet again in the car, planning for what to do when we get home, etc. When it's raining and you have to pull many tricks out your hat: finger painting, collage, play dough, singing, etc.

So Stanford on Tuesday, Cardiology appointment yesterday, with EKG and Echo cardiogram. Finding ways to divert Zoé's attention, making sure she's comfortable, and can stand still for 15 minutes...but all set and done, it worked out fine and Zoé got to enjoy the rest of her day at daycare.

Voila dear readers. I'm all done for today. Surgery is looming, less than a week to go. I just got a call from one of the anesthesiologists that will be on call for Zoé's surgery. Because of her neuro-muscular disease she is considered high risk and they will make sure to really monitor closely the drugs to give her. I am already a nervous wreck...I was told that there is some controversy over malignant hyperthermia as an adverse reaction for patients with MMD, and the doctor I spoke with, says that he doesn't think the risk is increased. They will give Zoé standard inhalation drugs and then monitor the dosage for IV sedatives. Most kids who get foot or leg surgery then have nerve block medicine, and therefore less IV medication and less gas medication. We will only be with her in the pre-op room, but won't be allowed in the OR. She might be given oral sedation before going into the OR, so she can be more relaxed (I wouldn't mind a dose of that myself)...then after that they inject the IV drug, and then place an airway device to make sure her airways are freed up. We'll be with her once she wakes up. She will stay in the hospital overnight, either in intensive care if she is overly sensitive to the drug or in a ward with other kids, just to be monitored. I am sure we won't be sleeping too well that night. Unfortunately, they only allow one parent to stay with the child overnight. I guess we'll flip the coin to decide who does :-)

We booked a hotel room at the Marriott across the way from Shriners and we'll then be able to come and go.

I will keep you informed as soon as we are back, in the meantime enjoy a long deserved Memorial Day Weekend!

Orthopedics Gear

Just a selection of what Zoé has had to endure for the last couple of months, from Pretty-in-pink colors to butterflies and flowers. Her new ones are going to be fancy: flower power and ladybugs. You will be seeing them soon enough...

Elmo part 1

Zoé and her man!!

Shriners

Shriners is an amazing place. Located in downtown Sacramento, opposite the UC Davis campus, it is a haven for kids of all ages who are in need of treatment. Their specialized pediatric care includes: orthopedics, burns, Spinal Cord Injury and specialized Plastic Surgery.

I say Haven, for at Shriners, acceptance into the program is based on two criteria - age and diagnosis. Any child under the age of 18 years old is eligible to benefit from the gift of free care providing the child's condition is within the scope of services offered. Yes, you have read correctly! It is free. I feel blessed that Zoé will benefit from their services regarding her cavus foot deformity and her Achilles tendon tightness. David and I have both decided that we would from now one, donate money to Shriners, for as they say in the brochure:"Each patient's path to success is fueled by private donations and driven by excellence in treatment, teaching and research."

We had an appointment there last Friday and Zoé was greeted like a queen. It was actually our pre-operation visit and we also met with a very knowledgeable doctor specializing in neuro-muscular diseases, such as Steinert.

The first nurse we saw asked us to undress Zoé and have her wear a gown, and our little patient looked quite cute in it. The nurse who did the pre-op asked Zoé to be her little helper, checking the stethoscope, putting the little cap on the instrument used to check ears, holding her little hammer for reflexes, etc.

The doctor then came and carefully examined Zoé corroborating what the surgeon had mentioned regarding Zoé's need for the following treatment plan: "For the right side, given the extent of the deformity and the fact that she has previously undergone serial casting, [they] recommend that a surgical, likely in the form of a plantar release for a cavus deformity be performed.As well as a heel cord lengthening for her equinus." As you can see I now fully understand the jargon, thanks to my little research in "Orthopedics for Dummies, or my self-taught course in Orthopedics 101."

It's funny how we, mothers of children with special needs, often claim loud and strong that we are our children's specialized providers. Providers of care, support, love, and above all, medical needs. Believe it or not, but we often know more than some of the doctors who see them.

It adds to the pride that we have knowing the ins and outs of our children. Sometimes it can be tiring and discouraging to have to explain Zoé's condition, but who else would do it better than me? I will give myself credit on this one.

Anyway, to go back to Shriners, after lunch we took Zoé to have her left foot casted for the new bright and flowery AFO she will be fitted with right after surgery. The right foot will be casted for 5 weeks, and after that, he too will have the flowers-and-lady-bugs design we had Zoé choose for the leg. We chose not to revisit butterflies...bringing back painful memories of the helmet.

We left Shriners with much confidence and hope that all will go smoothly on June 2nd. Of course, that doesn't mean that we won't be a pair of nervous wrecks on that day.

Zoé will stay as an inpatient for one night, just so they can monitor her closely.

We've already reserved Zoé a big surprise for the week after surgery, a live show of Elmo and his friends at the Oakland Arena, I think she will go crazy when she sees her friends dancing and singing onstage. I will have to film some of it to post on the blog.