Webinar #1

Dear readers,

I guess I found my true calling...

I participated in my first webinar last monh and it was truly inspiring. Coming together 

with other moms of kids with Congenital DM was a real source of elation and excitement. I was inspired to share what I have learned along the way, the ups and downs of caring for a child who has a terrible disease, but mainly sharing the knowledge of what has worked, what is working and the hope of one day finding a cure.

At the end of the webinar that lasted an hour, we answered a few questions from our listeners.

We shared some laughs about potty training, and how to change diapers in the trunk of a car, etc. One listener mentioned how amazed he was to hear that we have kept our sense of humor.

What else is there?

When facing such challenges what are the options? Sit down and cry or get up, grab the demon and run away with it.

Sharing is the hard-earned prize of the permanent caregiver. You get to share the nuggets of gold collected along the way. You get to inspire people to fight the fight, to become advocates for their child, to never give up hope, to cry when needed, to not beat yourself down when the battle gets tough, to never take no for an answer, and most importantly to learn that it is ok to ask for help, and to be kind to yourself.

"Permanent caregiver", now that is a hard life mask, but at the end of the day, it is probably the most rewarding mask I have ever worn.

I do feel frustrated, angry, nervous, anxious, but I have managed to maintain my sense of humor, my energy, my feistiness.

So after webinar, what is next? Well, the Myotonic Dystrophy Foundation is holding its annual conference (September 2014) in Washington DC, and I have been asked to be a panelist and share what I know about horse therapy and therapeutic riding and how it impacts our life. I am so honored and humbled that they would ask me to come and share what I have learned along the way.

How the Horse has become a special part of our life, how the magical bond Zoé shares with the horses is like no other. How it opens up people's worlds, how when Zoé gets all out of sorts at school, the minute she is on a horse, she gets to calm down, to focus. The strain on the body is alleviated so that she gets to concentrate on other tasks at hand.

When she is on a horse, she doesn't know that she is in therapy, she gets to sing while on the trail, to spot deer in the hills overlooking the barn, she gets to work on puzzles and fine motor skills and loves it. She shares a special bond on Starlight (Her favorite horse) as well as physical and emotional support.

You can see the promotional video about Xenophon on Vimeo: Xenophon Orinda Promotional video (with a cameo appearance!!)

 http://vimeo.com/82014021

Updates on most recent activities and upcoming appointments:

- Shriners Hospital: Zoé got casted so we get her new custom-made braces in 3 weeks.
Rehabilitation Clinic: Doctor M. told me he was impressed at the progress, how independent Zoé has become.
-School: Zoé is making progress, but what is keeping her back is focus. We need to address this issue, one more hurdle on the road.
-Zoé took part in the school revue and sang with her peers in front of a huge audience, three days in a row. (Quite taxing emotionally and physically)
-We are taking Zoé to Salt Lake City for a congenital DM research study (more on that as soon as I have the date)
-Appointment at Shriners in May to meet with Doctor Davids, the orthopedist who is going to "read" the last body motion analysis and tell us how Zoé is doing.
- registered Zoé for Communication Works, Group Therapy, but we are on a waiting list.
- Zoé will be seen at The Mind Institute in Sacramento in the coming weeks as well. 
-We are adding quite a bit of mileage, but after all these appointments in Sacramento Zoé and I share fun rides at Funderland. It has become our tradition !
 Well voilà for now, see you soon on the blog.

Below are the notes we collected for the webinar, regarding the tips we want to share with parents struggling through the journey on which we have all embarked (Though, I wish it were a cruise on the Nile). Rather than just listing the challenges we are offering solutions, or at least some strategies that have helped some of us.

TIPS FOR PARENTS CARING FOR CHILDREN WITH CONGENITAL DM

Number 1: take care of the caregiver

• You need to put on your own lifemask first
• You can’t do everything - know when to ask for help and when to say no
• Therapy and antidepressants can be immensely helpful

Then: caring for children with congential DM

PHYSICAL HEALTH (ERICA?  SARAH AND KRISTEN PICK ANY!)

Diet / Nutrition

• Balanced diet with a lot of protein, whole grains, fruit and vegetables (If your kids don’t like vegetables, consider making smoothies and mix in things like Kale and Spinach. They will never know. It’s also a great way to mix in laxatives or other bowel stimulants without them knowing (Lisa))
• Lots of water (if difficult try diluting apple juice or milk.  Try soups)
• Good healthy snacks: fruit, healthy smoothies, popcorn, nuts

(we keep bowl full of apples, cucumbers in refrig)

• Sugar and saturated fat in moderation (my boys get sick with too much)- Jack won’t even eat it.  
• Avoid heavily processed foods and high fructose corn syrup

If child has decreased appetite from taking focus medicine (ie Ritalin) during day try:

• Big breakfast before first dose- juice in AM with nuts and cheese, then a “to-go” snack on the way to school.  

(eggs with cheese, sausages, pancakes, oatmeal with ground nuts, Greek yogurt (Lisa))

• Big after school snack (PB&J, smoothies and popcorn)
• Big dinner (reward with dessert if they finish everything)
• If hungry before bed, offer late snack (banana is easy)
• It was suggested to me by our behavior specialist that I should give Kayla fewer snacks and much bigger meals. She doesn’t always want to eat and I’m pretty sure it’s because of her focus meds. The theory is that if she’s eating too many snacks, she isn’t hungry at mealtime. The best way to lose weight for any of us is to eat every few hours. I’ve found Kayla eating more during meals now that I’ve reduced her snacks throughout the day. (Lisa)

Choking and Eating Precautions

• Cut food (especially meats) into small pieces
• Reminder to take small bites
• Reminder to swallow before taking another bite
• Watch for pocketing of food in cheeks. This can cause a choking hazard at a time long after a meal and can catch you off guard. (Lisa)

Medications / Vitamins / Supplements

• Vitamins and homeopathic supplements - lots of options (these are our thoughts)

Can get expensive and time consuming - but can be useful

Suggest basic: daily vitamin and maybe fish oil

And maybe target challenge areas: GI, immune, resp. health, heart

(products I like listed at end - again just things I like, (Co-Q10 has been shown to help the heart in muscular dystrophy. (Lisa)) Also, we might want to add something here about Premier Cleanse since this is the meds area. (Lisa)

• Mexiletine (we’ve used it for 5+ years now and think it helps relieve myotonia - especially helps with speech and maybe GI)
• Ritalin (or similar products) to help with ADD and focus especially at school (SARAH - We use Focalin- appetite not really impacted) (Kayla takes Concerta for focus and it seems to work well. It’s a time release so she gets it throughout the day. (Lisa))

Challenge can be appetite suppression (some affected others not)

A friend is trying Strattera at night (ok sleepy and appetite better)

Sleep

• Consistent sleep routine is important (8-10 hours ideal)

Our boys go to bed by 8 most nights - and they are 14 and 15!

• Moderation of course - but keep in mind it takes kids longer to recover energy

Our boys would look completely wiped out when tired

When they were little we bribed them to have naps which really helped

• Some kids like to get “cozy” before bed - wrap blankets like burrito, rolling OT - roll up and down childs body with pillow before bed.  Settling.
• If diagnosed with sleep apnea… and unable to tolerate BiPap machines

Try raising the heads of their beds to 30* angle (with wedge or pillows)

• If your kids are restless at night, try giving them melatonin to get to sleep. It’s done wonders for Kayla (Lisa)

Respiratory health

• Flu shot every year, pneumococcal (pneumonia) vaccine every 5 years

• Good supplements for immunity during flu season (I like Wellness)
• If big cough develops, palm cup manual percussors can help

(simple instructions - ask your pulmonologist)

• If more serious respiratory issues are present, considering getting a chest percussion vest which will do mechanical percussion and it’s very effective in maintaining good respiratory health. (The Vest) (Lisa)

• Supplement: Premier Research Labs, PneumoVen (we are just starting)

Gastrointestinal challenges

• Don’t push (or over punish) the potty training

Consider pelvic floor therapy to help get “the feeling” of when to go

Consider biofeedback to help understand which muscles to use when

Star charts are always worth a shot!

• Recognize/appreciate diapers may be a bigger part of your life than planned

We think Huggies should reward their best customers!

• Meet with GI to understand issue

Often issue is constipation with leakage - encopresis

Careful not to compound constipation with Imodium

• Lots of options to try to relieve constipation:

Mineral oil, Miralax, Exlax (chocolate flavor), prunes

Supplement: Premier Research Labs, Premier Cleanse

• To handle leakage (esp at school) try using sanitary napkin

Child won’t have to change all their clothes so often

• Abdominal pain (often associated with constipation)

Try massaging abdomen like kneading bread, to sooth

Or let child roll belly on peanut ball to alleviate pain

• We use a special potty foot rest for Kayla which she uses to help get her body into a more natural position to eliminate. It’s worked really well. http://www.squattypotty.com/ (Lisa)

Simple but little kids especially need reminder to use bathroom before bed and first thing in the morning and within 15-20 minutes after every meal. If you aren’t have any success start with toileting every hour. Set a timer and alarm to stay on track. (Lisa)

Heart

• Recommend EKG each year, Echocardiogram and Holter Monitor every 3
• Supplement: CoQ10 has been suggested (Sarah)

Eyes

• Annual check ups (before school nurse calls to tell you they need glasses!)
• Vision therapy - some find it useful to train eyes to track better We have also used a patching program where you patch the stronger eye for an hour a day and it helps to strengthen the weaker eye with strabismus (Lisa)

ORTHOPEDIC CHALLENGES (SARAH)

• Consider visit with orthopedic specialist every 2 years for assessment to check spine, legs and anticipate challenges (and solutions!) (Erica)
• Consider body motion analysis assessment every 2 years to see how the gait improves, what muscles are fired, etc. (Sarah)
• Appointments with PT and home exercises help build core maintain flexibility

Core strength helps a lot with other challenges

Keeping achilles stretched is often ongoing project

Get exercises for home

• Work with PT and prosthetist to determine best foot and ankles supports

(lots of options and different opinions)

- Orthotics - good to have in all shoes fo rmore support

- Ankle foot orthotics (AFO) - taller profile for foot and ankle support

- Supra Malleolar Orthosis (SMO) - lower profile for foot support

- Blue Rocker carbon composite - helps with toe lift

(if appropriate, easier to disguise for self conscious teenagers)

• Make life easier whenever possible!

Great brand of shoes (with velcro): Tsukinoshi  (Kristen)

Elastic shoelace replacements - makes kids more independent (Erica)

Long shoe horn can help get AFOs on

Challenge keeping calves and achilles stretched

• AFOs for stretching at night (Erica)

• Pilates stretching board - stretch achilles (in front of TV or video games for 20 min/day) (Erica)
• Serial casting to stretch - tough sleeping but enables child to get off toes and use AFOs better (Kristen)
• There are often good surgical options

Tendon transfer to help lift toes (Erica)

Operate on plantar fascia to release tightness (Sarah)

Muscle pain

• Back and neck pain - try heating pad on low while resting on bed
• Stiff calves or muscles - try massaging with yoga rolling pin or peanut ball

EDUCATION (SARAH)

Preschool age

• Children with special needs are eligible Early Intervention (age 3-5)
• To identify support services in your area, google you state + Department of Developmental Disabilities or school district

(I think we shouldn’t include these California examples… let’s discuss)

- California specific ex (Sarah) - regional centers, family resource networks

- California Childrens Services offer therapies (PT, OT, speech) for pre-school

- CCS monitor child until 21 with annual assessments, can loan walkers, wheelchairs

- Directory of CA regional centers: http://www.dds.ca.gov/RC/RCList.cfm

• Make sure you child is evaluated for an IEP (age 3 onward)  Students with Myotonic Dystrophy should in most cases be eligible for special education support.

Establish a “team” to support your child (parents, teachers, therapists+)

• Team meeting at start of every year  - invite everyone who works with your child
• Keep lines of communication open - provide list of team’s contact information

• Make a resume for your child and share with team (credit Jacinda Sampson)

Include information about child’s family, interests, hobbies, medical information (include pages from myotonic.org like overview, parts of body, anesthetic guidelines)

• Consider requesting weekly update email from teachers and ask what you can do at home to supplement or work on.
• Consider putting ‘communication notebook’ in backpack so that any ideas, comments or questions can be addressed.
• If GI issues are a concern, ask that every toileting event be noted down with the success rate with urine and bowel movements. I have a great log if you want a sample. (Lisa)

Individualized Education Program (IEP)

• Definition: An IEP is a truly individualized document which creates an opportunity for teachers, parents, school administrators and students to work together to improve educational results for children with disabilities.  The IEP guides the delivery of special education supports and services for the student with a disability (ironically, this is the golden ticket!)

• Invite all professionals who work with child (your “team”) to annual IEPs
• Understand (and take advantage of appropriate) services available at school

PT, OT, speech and language, counseling, social support, adaptive PE

• Explore option of 1-to-1 aide (eligibility often with ‘orthopedic impairment’)
• Review classroom placements (pull out vs push in)
• Understand plans for modification vs accommodation (ask to have a reduced number of problems work to allow your child to keep up. It should be the same work as the rest of the class, just a reduction in the amount of work. For example, if the class has 25 spelling words, ask that your child only have 15. This must be written into the IEP. This is an accommodation, not a modification. It’s important to try and not modify, just accommodate. (Lisa)
• Be cooperative but know how/where to get support if you run into challenges,

ie Family Resource Network or local agencies supporting parents of special needs kids.  In N California Matrix.

• Always audio record your meetings. You must give a min. of 24 hour notice to school so they can tape the meeting as well (Lisa)
• If child struggles with behaviors, ask for a behavior assessment and put a behavior support plan (BSP) in place. Make sure all aides are trained in the behavior protocols. (Lisa)

ADAPTIVE EQUIPMENT THAT CAN BE USEFUL

• Bouncy seats or chair wedge - for classroom
• Slant boards - for classroom and homework
• Fidget toys - ie chewlery

Also I take little bag of “guys” everywhere to entertain/distract (out for dinner)

• Wheelchair for long distances (can be ordered for flights)
• Handicap placard (great to minimize walking)
• Electric toothbrush
• Peanut ball - for massaging abdomen when stomach cramps
• Yoga rolling pin - massage calves when stiff
• Lots of good apps for ipad (good link: http://trc.marinschools.org/apps.htm)

THERAPY

Take advantage of any services offered in schools and/or consider private therapy

• Early Intervention (pre age 3)

• Physical therapy
• Occupational therapy

• Speech and language, oral motor
• Counseling or social groups
• 1-to-1 aide (eligibility often with ‘orthopedic impairment’)  Jack Fitz and Ben K have had one for several years- makes all the difference.  Orthopedic impairment is the right primary eligibility for our kids. It gives them access to additional funding from the government.

• APE (Adaptive PE) as well as PE (yes)

Some other therapy options:

• GI biofeedback - can be helpful
• Vision therapy - waste of time and money for some
• Psychological counseling
• Therapy for anxiety - we did Cognitive Behavioral Therapy that helped
• Hippotherapy - PT on horseback - fun and theraputic
• OT: sensory motor gym, sensory integration listening program
• Water therapy - with rx from doctor insurance may help cover cost
• Music therapy - great for motor control and speech (Lisa)

SOCIALIZATION

Challenges:

• Some kids with DM tend to have autistic like behavior: obsessions, odd behaviors, lack of social skills (reading cues, social pragmatism, understanding boundaries)
• Facial configuration of a child that never smiles (due to low muscle tone) can undermine relationships
• Siblings without MD are so good to have as they model and in my case, with twins, I think Jack and parents were able to maintain a healthy perspective.  I am noticing as they grow that it is harder for both as the “differences” show themselves.  Thinking the “special needs” sibling gets more attention or special treatment.  It is important that both kids have things that are theirs- in sports or clubs and that parents and siblings support each child’s endeavors.

Some strategies that can help:

• Consider communication groups that enable kids to interact and learn social skills (often developed for autistic kids but great for ours too)
• Play therapy (Sarah)
• Social Thinking groups (Erica)
• Behavioralist clinic (determined Zoe has PDD-NOS)  (Sarah)
• Behavior therapy - Group / individual / summer camps

(again used with kids on Autism spectrum)  (Kristen)

• Work with 4 zones of regulation - teaching child to self regulate emotions (Sarah)

RECOMMENDED ACTIVITIES

Bowling - great with friends or birthday parties

(check for Miracle League for people with special needs)

Swimming - excellent exercise and fun

Look for Challenger Leagues or sports programs for kids with special needs

Disabled ski programs - amazing (we recommend snowboarding)

Ice skating - rinks can usually accommodate kids with special needs.

MDA Camp (each kid has own counselor and they can go until they are 18) Also, if they can be paired with another child who has DM, it helps with the social aspect of camp. Kayla and Kali Warford bunk together and have very similar interests and medical needs so the counselors are able to give them the same kind of attention and experiences. They have had the same counselors two years in a row which has been great. They also have a cabin that has a bathroom in the room. That makes a huge difference since the GI system can be so tricky in this disease (Lisa)

(Jeremy and Conor this we should add something like this at end...

What you really need to deal with this disease is family and friends to support you.

Thoughts?)

GI supplement: http://www.naturalhealthyconcepts.com/cleanse-blend-p-premier-research.html

(we’ve had great success with this for couple years - others too)

Respiratory supplement:

http://www.naturalhealthyconcepts.com/lung-complex-p-premier-research.html

(we are just starting this)

Heart supplement:

http://www.naturalhealthyconcepts.com/coq-quinol-8oz-p-premier-research.html

Immune booster:

Wellness:

http://www.sourcenaturals.com/products/GP1345/

Elderberry: http://www.amazon.com/Gaia-Herbs-Elderberry-Liquid-Phyto-Capsules/dp/B0036THLZY/ref=sr_1_1?ie=UTF8&qid=1392142309&sr=8-1&keywords=gaia+black+elderberry

Respiratory health - palm cup precussors

http://www.smiths-medical.com/catalog/bronchial-hygiene/palm-cups/palm-cups-percussors.html

http://www.respirtech.com/incourage-airway-clearance-therapy (Lisa)

Elastic shoelaces:

http://www.healthyfeetstore.com/speed-laces-stretchable-shoe-laces-ibungee.html?cmp=googleproducts&kw=speed-laces-stretchable-shoe-laces-ibungee&Color=Brown%20(brn)&Size=26&gclid=CP_lj9C1uLwCFUVlfgoddDMACA

AFO options:

Blue rocker: http://www.allardusa.com/frames/prodframes.html

SMO: http://www.orthomerica.com/product/1609137-supra-malleolar-orthosis-smo

(I’m going to send more photos)

Shoes for AFO’s: http://www.hatchbacksfootwear.com/elites.html (Lisa)

School

Slant board http://www.amazon.com/Therapro-Inc-Slant-Board/dp/B001V1IYM8

Chair wedge

http://store.schoolspecialty.com/OA_HTML/ibeCCtpItmDspRte.jsp?minisite=10206&item=1580570

Fidget toys - chewelry

http://store.schoolspecialty.com/OA_HTML/ibeCCtpItmDspRte.jsp?minisite=10206&item=85653

Tsukihoshi shoes: http://www.tsukihoshi.com/youth/

Pilates slant board: http://www.amazon.com/Fitter-First-Slant-APPLICABLE-Regular/dp/B001OY4ETE/ref=sr_1_1?ie=UTF8&qid=1391721486&sr=8-1&keywords=stretching+board

Great educational iPad apps - might be worth copy of screen:

http://trc.marinschools.org/apps.htm

Still to come:

Example of child resume and MDF pages to provide to school?

Information to provide to doctors and therapists

Photos of boys AFOs, night AFOs and stretching board

BACK UP NOTES:

FROM SARAH

Education:

We asked for APE (Adaptive PE) as well as PE.

At our annual IEPs we invite all the professionals that work with Zoé (From her OT, to her Horse therapist).

To stay in the loop of what goes on regarding daily activities, we asked the special Ed coordinator to send us a weekly email about what happened in the classroom and what we can do at home to supplement or work on. It is a great way to stay connected.

In the backpack, it is a good idea to put a “communication notebook” that goes back and forth from school to house so that any ideas, questions, comments can be addressed.

Agencies such as Family Resource Network are great at helping advocate for IEPs.

We also work with the 4 zones of self-regulation. Teaching our daughter to self regulate her emotions. (I can detail what those are, if need be).

Socialization was tough so we did play therapy, which didn’t really work. Facial configuration of a child that never smiles (Because unable due to low muscle tone) undermines lack of relationships.

Some kids with DM tend to have autistic like behavior: obsessions, odd behaviors, lack of social skills (Reading cues,  social pragmatics, understanding boundaries, etc.)

We took her to a behaviorist clinic that determined that she has PDD-NOS

(you are on the spectrum, but don’t meet the criteria to be fully autistic.)

Communication groups can help to enable kids to interact and learn social skills.

Social Thinking groups - Anna Vagin in Marin

We went straight to the Regional Center.

CCS (California Children Services) offers therapies such as PT, OT. Once the school district offers services they drop theirs but they monitor your child till he turns 21, with annual assessments. (I don’t find these clinics that valuable) However, they can loan walkers, wheelchairs. Our daughter started walking with a walker that they lent us.

We do a body motion analysis assessment every 2 years to see how the gait improves, what muscles are fired, etc.

Let's celebrate what we still have and not what we have lost forever.

Dear all of you,
So much to write about since my last post. So many new thoughts and tips, encounters and discussions.
Our visit to Shriners Hospital went as smoothly as can be with our Zoé being a real trooper. We were there a good two hours during the test and then had lunch at the cafeteria. Not my kind of restaurant, but well, Zoé wanted it. We then stayed and played in the Hospital "play room", which is a tough place to be, surrounded by children that are sick and in there for the long run, covered in special gauze, much of them burnt victims.
The test results will be analyzed by an orthopedist who will let us know whether she's improved since our last Body Motion Analysis.


After our trip to Sacramento came mine, at UC Davis Medical Center where I underwent the second round of tests looking at my skeleton, muscle strength, breathing, running, running up stairs, fast-walking, you name it, the whole gamut of exercises. What was nice was to go there with Julie and to have the moral support of family. The support system is essential especially when you suffer from a chronic illness that has no cure.

The most incredible news about our last month was the symposium on Myotonic Dystrophy held at Stanford Hospital.
A bomb.
To be surrounded by people who remind you of why you are there, who share your grief and pain, who treasure the same hopes and dreams of one day finding a cure.

The panel of doctors was impressive, two neurologists ( our favorite one, Dr. Day) one from U.C. Irvine, a cardiologist, a gastroenterologist, a sleep doctor, and last but not least, the geneticist from U.C. Santa Cruz, who is exploring the unknown, the unfathomable realm of the cells that make our body.

The morning session about genetics and sleep, cardiac arythmeia, followed by discussion on the "gut"and bowel movements was followed by two sessions on adults living with MMD and caregivers dealing with kids and MMD.
We met so many incredible people, some willing to share their trauma and depression, others without gall bladders and with pacemakers, mothers of 3 with 2 suffering from MMD and autism spectrum disorder. Grandparents caring for grandchildren for the mothers are often to compromised to help themselves.
It is all so painful, and yet you end up putting everything into perspective. Remember the motto: " don't sweat the small stuff", but I will add, "don't sugarcoat it either!" Yes, it sucks, but when people tell you, "I don't know how you do it", well let me tell you, you "just do it" and it's not a Nike ad. It's one hell of an emotional roller coaster, day in, day out.
Now I have learned new things: early menopause, thinning or balding hair, eyelids drooping, might  and may be not new symptoms. But let's not dwell on that.

Let's celebrate what we still have and not what we have lost forever.

Happy New Year!

Happy New Year dear readers, and may 2014 be a year of peace, joy, health and personal fulfillment.

I have been rather swamped after our fun-filled trip down south. We seized the opportunity of a 10-day break to enjoy the sunny rays of Southern California and what glorious days. Swimming, soaking the heat in the jacuzzi, jumping in the waves, looking at gorgeous sunsets, eating scrumptious food and to top it all off, elbowing our way through Disneyland, California adventure park and Knotts Berry Farm.

Where we got some stares...but I am quite blind to them. Who cares if Zoé is being looked at because she is in a stroller that is almost too small, because she simply cannot walk through the crowds, running from Mickey to the Mean Queen (I will refresh your memory, the mean queen in Snow white) to a ride that's a mile away and back again. We tested her patience, and it was hard, but she managed to pull through, when wait time for some rides were an hour long! But what the heck Peter Pan is worth it, flying over London in a ship to the Land of Neverland...we'll wait for that one.

Now we are back to the grind, reuniting with the routine and hoping for a healthy and peaceful year ahead.

What are my New Year 's resolutions, you might ask, as is customary at this time of year? First off, well to take care of the body and the mind. To cut myself some slack and to not sweat the small stuff. Easier said than done when I know that parenting doesn't come with a guide book. And as Bethany Hamilton said:"I don't need easy. I just need possible."

I volunteered in Zoé's classroom today and it was nice to see her knowing names of classmates, saying "no" to a friend who suggested a game Zoé didn't want to play at recess. She is becoming more assertive and can now stand her ground and say what she thinks. I like that!

Except when she is the master manipulator and blatantly says to her swim instructor and in front of me: "Today I won't listen to anything you say because my mommy is watching, but when I come on Saturday with my daddy I will follow your instructions!!" Oh well , assertion is what we want, right? I have been fighting that one, so I pick my battles. I'll give her that one. It is probably her sense of humor, knowing that I will just smile and laugh out loud inside.

Never a dull moment.

We have a busy two weeks ahead: a Body Motion Analysis at Shriners hospital in Sacramento on Monday. Where they put probes all over Zoé's body to get a 3-D imaging of her body and skeleton. We did it 2 years ago and wanted a baseline then. Now we want to see if she has improved.  Zoé loves to see how she is transformed into some kind of robot-like figure on the computer. Hopefully it will be easier to have her follow instructions. Two years ago we had to pretend she was such and such princess regally walking from one end of the room and back again bribing her with chocolate ice-cream if she did well....

Hopefully this time I can stay in the bleachers cheering her on to follow instructions.

Then I go to UC Davis for a muscle and strength study.  I did it a year and a half ago and it was once again a baseline. We'll see what has changed. I know it will be hard to see how well I perform.  Last time I did it I was so exhausted on the way back that I pulled over into Macy's parking lot to snooze for 10 minutes.
The drive is always intense and especially after exerting myself for over an hour.

I then go for a sleep study, I managed to make an appointment, so we'll see how that goes.

Sometimes I am so blasé by these appointments that I wonder how my life would be without them.

But then again I ponder and reflect and ask myself why is it this way? But I don't know any other way. I have one child and two diseases to battle!
I wear the caregiver's armor when I need to care for Zoé, which I wear 24-7 365 days a year and then the me armor when Zoé is in bed or in class and I get a chance to work on the body.

I like to think about what Mother Teresa said, which hits home when I am in crisis mode:
"I know God will not give me anything I can't handle.  I just wish that he didn't trust me so much."

It is just hard at times to always be performant in everything you do. So this year, I will stop and reflect and breathe. So funny how we forget to take these long, slow, deep breaths that are essential to pump the oxygen, and fill our lungs with air and peace and quiet.

Yesterday, I picked up Zoé at an after school play date and one of her friend's dad asked her "How was Disneyland? Was it fun?" and Zoé dashing off, pretending to be Cinderella, yelled; "NO!". Great, I need to work on social expectations.  People might think she is being rude.  At the very least they'll think she is just awkward
Zoé doesn't understand  that sometimes being who she is will offend people.
It takes Herculean efforts to bring back Zoé to earth when she is in fantasy land, where she thinks that she's Doctor Mc Stuffins or Princess Sofia.

On a different note, I have been working on little "homework" projects with Zoé, just so that she gets ready for first grade. You are probably thinking that I am nuts adding to the load, but I want Zoé to understand that school is serious business and that HW will be part of it come first grade. I know I shouldn't be afraid of Zoé's skills, but I don't want her to fall behind. It's a tricky situation. Everything is hard: tracing, writing, coloring, cutting, lacing, simply focusing. When Zoé was at recess today she rested with her head on the ground. She said her neck hurt. I know how the pain can affect her in every little thing she does. Sitting still on a chair or on the floor at circle time is tough, navigating the playground, running. And now, a new thing we try to work on is the drool. Zoé who never drooled, does it constantly. I don't know whether it is the high palate or the new sets of teeth...but it is really hard to prevent. I need to see what can be done.

In the meantime I don't give up faith that we'll find a way. Zoé deserves my faith and hope, and she will get it. I will not give up. The beat goes on!

Moby Dick

With Daddy O

Knott's Berry Farm and the Peanut Gallery

Whoohoo

Snoop Doggy Dog

Vamos a la playa

First movie ever

Who's the fairest of them all?

Princess Sofia

Engrossed in the movie : Frozen!

Little fashionista

Like my do?

Wassup? 

Congenital DM - The Medical Team

Celebrating neuro-diversity

I like this catchphrase, feels good to think we can celebrate how different our children are, how their reality is so different from the norm, how their quirky personality can outshine the neuro-typical child.
The past few days have been hard. Zoé is the star person in the classroom this week as we celebrated my baby turning 6.
I worked in the classroom on Monday and left with a bittersweet after taste. Seeing Zoé among her peers highlighted once again how different she is and how indifferent most of them are to her and her challenges.
How can some children be so mean.
Yes, bullying is out and in full force.
Zoé's supposedly "best friend" has been giving her a hard time..."Shut your mouth, I am sick of it!", "Can you eat properly?, "I am having a play date with so and so, and you are NOT invited!"...for some odd reason mean girls work like magnets and Zoé just follows the "dictator" around, wanting to be accepted, to be valued for who she is, to simply be friends.
My mama bear instinct just comes right out and I hurt inside. I feel for Zoé, I can just see what we are going to have to face.
I hadn't seen this coming, or I didn't want to project myself. Zoé is such a love bug, a warm and fuzzy little girl who is confronted to mean spirited kids who don't know what empathy is.
Oh wait a second, let me rephrase this,  Zoé doesn't need empathy from her peers, she is bright and joyful and doesn't act out with tantrums, hardly ever cries, after each fall she simply stands up and says "Shake it off!"
She is conquering the world in her own way, but we need to teach her self-advocacy.
The mean girl says something ugly to Zoé and our little bug tells her in response:"But we can still be friends, right?".
and I want to scream, NO, you don't want to be friends, this girl is a not meant to be a friend. I want Zoé to fend for herself, but I am torn as I want to chime in and tell her what to say, and how to act.
It hurts.

Le Gâteau!

See maman, I can close my mouth!

Flying high above the Zoo

Playing golf with Daddy-O

Zoo Fun

Last night of Hanukkah, Zoé lights the Menorah

Hannukah gifts: Caline et Touffy