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.

Orthopaedics 101

I have the feeling that I am in class, back into college, studying orthopedics. Zoé's feet: her achilles tendon, her calcaneous, her equinus, and her plantar facia. Well, I invite you to google all these terms if you are really interested in foot anatomy. I personally thought I'd leave it to having pedicures in the Vietnamese nail parlors that crowd Piedmont Avenue!!

I never thought I'd be reading medical papers, searching for answers to the many questions that crowd my mind. All this has to do with Zoé's upcoming surgery. As you can see I am quite unnerved by it all.

Nicholas Andry “the Father of Orthopaedics” first used the term in 1741 when he published “Orthopaedia or The Art of Correcting and Preventing Deformities in Children”. The word Orthopaedic is derived from the Greek word “orthos” meaning to straighten and “paidion” signifying children. In early years, the specialty of Orthopaedics focused primarily on the correction of childhood musculoskeletal deformities such as polio, rickets, and scoliosis. This spelling is also used to distinguish it from other specialties such as pediatrics and podiatry, since in Latin “pedis” means foot and in Greek “pod” represents the foot.

Today, the specialty of Orthopaedics is the branch of medicine that deals exclusively with the diagnosis and treatment of injuries and disorders of the musculoskeletal system.

OK, enough science for one post, all I want to say is that I am at a loss. It's so difficult to have many opinions, especially when they differ. We know that Zoé needs surgery on her foot, we've tried the non-invasive options: Kinésio taping, serial casting, stretching, but to no avail, surgery is needed. We saw some doctors at Stanford, Oakland Children's Hospital, Shriner's, and we were told that she needed her Achilles tendon to be nipped in 3 spots. We were also told by one doctor that he had to cut the plantar facia, in other words do a plantar release so that by eliminating her over extended high arch (cavus deformity), he would have something flat to be able to push onto to get the full range of stretch required to cast Zoé and ultimately fit her into a new pair of beautiful AFO's (Ankle Foot Orthotics). I am at a loss, because another Doctor told us he would never do a plantar release for 3 reasons: a) Zoé is much too young, b) Plantar release should be used as the last resort when nothing has worked before that and c) it is apparently VERY painful....so now I am confused, worried, stressed out!

I feel that my head is spinning out of control and that my legs are on a treadmill with no stop button.

Tomorrow, we are going up to Shriner's for the pre-op appointment. We are also going to meet an amazing doctor who deals with feet and muscles and did a great job on our friend Kayla (Cureforkayla.com). I will , of course, ask him what he thinks of the plantar release, and whether it is known to be unbearable (On a scale of 1 to 10, where he puts it).

As you can see from the pictures on this post, we've had an array of "shoes" for Zoé from, purple without hinges, to pink with hinges (She's 6 months old then) to blue fiberglass and plaster...I will have to post all the different types of AFO's we still have in the house, you'll be amazed. I think Payless Shoes will be pale in comparison. And you can see how we've come a long way...since that first pair of pink booties...

On another note, Zoé had 4 appointments last Tuesday. We started with her ophthalmologist, she's gained a bit in terms of being less far-sighted, but she's still going to need glasses, anyway, she's soooooo cute in her red glasses, that we don't care.

Her ears are fine, after passing the audio test with flying colors.

Kids appointments are so fun, and providers really know how to make them creative for kids to sit there, cooperating whether watching a video, or placing pegs on a board. Zoé loves her sticker rewards! and she knows that we'll then go get a frozen yogurt together, for I think I deserve my reward too.

Voila for now. We go to Shriner's tomorrow, then cardiologist for me on Monday, for Zoé early June and a busy couple of weeks ahead before the surgery as we go back to Stanford for a reevaluation of Zoé's cavus feet, and after the surgery...if we ever manage to make up our mind...and that is another story.

We'll let you know how things go up North! (Sacramento)

Till then enjoy what is left of the week:-)

Kafka versus Fairyland

I should be cleaning the kitchen and folding laundry while Zoé is napping, but I'd rather do something more creative, like updating you on our latest news.

Maybe I should start with the Kafkaesque status of the American medical system, or maybe I should rather mention the insurance companies and their warped ways of doing things.

I spent half of my day off on the phone yesterday dealing with pre-authorization, pre-certification and pre-notifications for Zoé's upcoming appointments.

Indeed, next week we have speech therapy on Monday, ophthalmology and audiology clinic on Tuesday, then we go up to Sacramento on Friday to meet with Dr. Macdonald about Zoé's upcoming surgery and her need of AFO's.

Our insurance company requires of us to make all the pre-notifications regarding appointments. If you forget one, which I did in January while I was jet lagged, I am entitled to one free pass in a lifetime, wow, how generous. Isn't failure human??? NOT IN THE KAFKAESQUE WORLD OF THE BUREAUCRACY WE HAVE TO DEAL WITH while undergoing major stress for other reasons...okay, I know I should not vent like that, but the blog is cathartic and therapeutic. It's my own therapy!

So I got all my pre-notes, but I mustn't forget to pre-note for Zoé's cardiology clinic appointment which will be the following week. Notice how I handle the jargon pretty well...

I also had to deal with speech therapy and the fact that our insurance would only cover 60% of the cost with an out-of-network provider, but I battled for more than an hour about the fact that since they couldn't provide me with an in-network speech pathologist, I had no choice but to get services outside. Well, after much aggravation, I managed to advocate for Zoé's needs and hurray!!!!! they will cover 90% of the cost. It does pay to keep the fight on.

I also called a number of ranches to see whether we could get Zoé into a hippotherapy program and the only place I found is in Palo Alto. It might be worth the drive and the money... After her surgery it might be the only thing she can do. We were told that while in her casts, Zoé might lose the strength she got in her upper body, so if we could get her on a horse, then she could just work on strength training: trunk control, neck and shoulder work while strapped to the horse, she could then work her hips as well.

I will have to come up with a lot of ideas to keep her happy. All suggestions are welcome, if you have any ideas to keep my Zoé busy and happy while in her casts. We might have to invest in a swing set for the backyard, we'll do a lot of collage, painting, get frozen yogurt down the road and maybe use plastic bags and duck tape around her legs when we do water play at the kitchen sink...I shall keep you informed do not fear.

After all this venting I must say that no matter what, Zoé still manages to beat the odds, to conquer what is at hand: the 3 little pigs'house at Fairyland, the lion-shaped water fountain and Daddy's tender arms.

Zoé also enjoyed Aunty Wendy's visit last week and got many treats: Elmo's t-shirt and cute dresses for her wardrobe.

The magical realm of Fairyland changed Zoé into our Little Red Riding Hat.

Much love to y'all.