Saturday, May 22, 2010

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!

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