Brigitte Sarte-Dance is available for immediate phone support
613-823-1159  brigitte.sarte-dance@ocdsb.ca

Update for Caroline Dance (Cara), January 2009, age 3 yrs.

Caroline is doing so well! She amazes us at every turn. Here are the developments since the last update (1 ½ ago-yikes!):

Medically, Cara is doing very well. She is still taking Prevacid for acid reflux. She is off her medication for seizures at the moment, as the myoclonic seizures (little startles/jerks) which she had, have stopped. Hurrah! These greatly decreased after her dental surgery last May, when she had cavities in her 4 molars filled. (The liquid Nitrazepam, which she had been taking since 6 months old, had sugar in it!) Teeth brushing is quite a challenge.

The only other medical concern right now is her polycystic kidneys. She is being monitored and is experiencing no symptoms related to the cysts. Again, hurrah! She still needs her glasses but refuses, REFUSES, to wear them. I suppose it will come when she’s ready again. We are still not quite sure how well she hears, but the audiology test is difficult to assess at this time. She continues to catch many “little” illnesses, i.e., ear and yeast infections, which seem to take her a long time to overcome. We continue to see her many doctors/specialists, each at least once a year, including: a paediatrician, a neurologist, a developmental paediatrician, a nephrologist, a geneticist, an ENT doctor, an ophthalmologist, an audiologist, a dentist, an occupational therapist, a physiotherapist, a speech pathologist, a feeding specialist, an infant development worker and a social worker.

Developmentally, Caroline has made some incredible gains. Much of her development is focused on gross and small motor skills, although radial movements seem to challenge her. She is now learning to walk with a Kaye walker! Cognitively, she is at about the 9-12 month old range. She is cleverer than we know, I think, as she gets into all kinds of mischief that we do not expect and we need to house proof beyond what we did for her older sister! Baha! She is not saying any words yet and babbles inconsistently; however, she speaks volumes with her expressions. Cara is beginning to use a communicative device for simple phrases. Caroline, sometimes gains a skill and uses if for about a month, then stops using when learning new skills. The skills seem to come back when she is ready to use them again. Here is a list of some of her achievements since the last update, she:

-sat independently at 15 months
-played peek-a-boo at 18months
-crawled at 21 months
-pulled to stand at 21 months
-took a spoon given to her and put it in her mouth to feed herself at 22 months
-fed herself small pieces of chopped or tender foods (raking) at 22months
-began to use adapted sign language for “all done”, “bye-bye”, “yes”, and “more” at about 30 months
-clapped and banged toys together at 31 months
-walked with Kaye walker at 34 months
-matched puzzle pieces (magnetic) at 3 ¼ years
-used the pincer grasp to pick up food (rather than raking) 3 ½ years – yeah!
-cruises on furniture readily at 3 ½ years and is still learning…!

Our family and friends continue to be such a wonderful support system! They help us grow as a family and help us manage the challenges that arise in dealing with a special needs child. We are also so fortunate in the medical and social services provided by CHEO (Children’s Hospital of Eastern Ontario) and OCTC (Ottawa Children’s Treatment Centre). They are a most professional and caring group of health care providers and treat Cara and our family with such dignity and respect.

Bless you for taking the time to read our story!

Sincerely,

Brigitte Sarte-Dance Brigitte.Sarte-Dance@ocdsb.ca  for the Dance family (Scott, Stephanie and Sweet Caroline)
 

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Update for Caroline "Cara" Dance
November 2006- Caroline age, 15 months
Hurrah! Cara has turned one and is now a long-term survivor! She is doing so well. She continues to have no major systems problems and she is growing fabulously. She is now on the growth chart in the 5th percentile. She is eating a variety of pureed foods and soft solids, like fish and beans/peas, and is desperately trying to feed herself with a spoon. She is now seeing a physiotherapist as well as an OT at joint sessions which are tremendously helpful. Cara still isn't quite sitting independently yet, but we are getting there.

She is beginning to use the righting reflex to keep herself up. She has become much more active in play and is curious about toys, although she becomes very orally fixated when she is teething. She is still on Prevacid for her acid reflux and Nitrazepam for her myoclonic seizures. Her seizures are down to about 20 single/double sets per day which are little startles/jerks that last no more than a second per set. She continues to be such a happy baby and brings so much love and joy into our lives.

Brigitte for the Dance Family
(including daddy Scott and big sister Stephanie)

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Introducing Sweet Caroline

"Cara’s diagnosis has given us a new perspective on life. We now see more clearly than ever how precious life is and how so much of life’s stresses are not the major catastrophes they appear to be. Family, friends, sharing, caring, laughing, celebrating, dancing (ok, skiing too Scott) ˆ all important! Enjoy and appreciate every day, no matter what you are doing, no matter how mundane or challenging. ~Brigitte Sarte-Dance

Caroline "Cara" Juliet Dance was born at 5:30 pm on Friday, September 9th 2005, four weeks early, to her proud parents, Brigitte and Scott, and her older sister Stephanie. She was born at the Queensway-Carleton Hospital Birthing Unit in Ottawa, Ontario, Canada. She weighed 5 pounds 4 ounces. She had a seventeen-day stay in the hospital after battling with a pneumothorax (collapsed lung), jaundice and weight gain issues. She also had a heart murmur, typical of premature babies. She was "tongue tied" and has a sub-mucous cleft palate, which was recently discovered.

Caroline was diagnosed with Translocation Trisomy 13 at 8 months old. A month earlier, she had a week long stay at the Children's Hospital of Eastern Ontario (CHEO-an AMAZING hospital and staff!) when she began having seizures. We left the hospital with a diagnosis of Epilepsy and farsightedness. Her MRI was normal and only chromosomal blood analysis was outstanding. About six weeks later, we were called back to the Genetics department of CHEO and received the news in a very professional, gentle and empathetic manner. The doctor showed us a photo of Cara’s chromosomes. She has 80% of an extra chromosome 13 which is attached to chromosome 22. Difficult news, but finally a clear diagnosis. He gave us no life expectancy limit and told us to keep doing all of the things we were already doing for her.

Now, at 10 months old, Caroline is a very happy baby who coos and belly laughs at the drop of a hat. She does not, nor has had, any major health concerns since birth. She has about 25 myoclonic seizures per day, which are harmless and occur in clusters of 2 or 3 little jerks that last about a second or two per set. She has developmental delays, although she is learning and getting stronger daily. Cara is rolling over, can lie on her tummy and lift herself to 90 degrees. She has good head control and can sit/stand in her exersaucer and play with its toys. She can sit in tripod position for a few seconds on her own. She can pick up objects and loves to put things, toys, spoon and cookies etc., in her mouth.

Caroline is still being breastfed and has been eating solid pureed foods since 5 months old. She is long and thin, like her sister, but is keeping to her own 1st percentile on the growth chart. Cara is on Nitrazepam, an anti-convulsion medication which we are still playing with to minimize the amount of seizures, and Prevacid (lifesaver!) for her acid reflux. (She was diagnosed with acid reflux at about 3 months of age after having spent a couple of months crying 4-5 hours per day with what we thought was colic. Poor thing!) She wears glasses, which help her see very well.

Caroline is being followed by a team of very caring professionals including: her pediatrician, a developmental pediatrician, a neurologist, a geneticist, an occupational therapist, an ophthalmologist, an audiologist and cardiologist. She will see the ENT (ear/nose/throat) doctor about the sub-mucous cleft palate. We attend a Special Needs playgroup that is organized through the Ottawa Children's Treatment Centre (which is wonderful!)

We, Scott, Stephanie, Caroline and I, are so fortunate in our family and friends (you know who you are!) who are overwhelmingly generous with their time, help and support. There is always risk involved when one has children and no future is certain or predictable. We are just going to make the best of every obstacle to come our way and are going to keep appreciating both our daughters for the lovely miracles they are. Cara’s diagnosis has given us a new perspective on life. We now see more clearly than ever how precious life is and how so much of life’s stresses are not the major catastrophes they appear to be. Family, friends, sharing, caring, laughing, celebrating, dancing (ok, skiing too Scott) ˆ all important! Enjoy and appreciate every day, no matter what you are doing, no matter how mundane or challenging.

Sincerely,
Brigitte Sarte-Dance for the Dance Clan
(Scott, Stephanie, Caroline Dance and Brigitte too!)

"Live like there is no tomorrow,
Dance like no one is watching,
And laugh like you’ve never known sorrow."
Chinese proverb
 

Brigitte Sarte-Dance
Here is my e-mail: brigitte.sarte-dance@ocdsb.ca
Scott's e-mail: maaco@magma.ca