A New Path (It better be the right one)

We finally met with the Movement Disorder Specialist and she has sent us on another path in terms of a diagnosis for Elizabeth; dystonia. She feels Elizabeth is not Ataxic and that her movements and difficulty walking are due to dystonia. I am on the fence about the diagnosis, I do see some dystonic movements with certain activities and she seems to still have her startle reflex (when she is in a busy crowd walking is hard as she gets startled and falls), she can stiffen up when she is trying to do a difficult task and she frequently cries with leg cramps but I still see her as Ataxic. The Dr. suggests a trial of Levodopa/Carbidopa to see if her dystonia improves as there is a type of dystonia (dopa-responsive dsytonia) that is completely cured with this drug. The new medication will increase the dopamine levels in her brain and hopefully help with her movements, this medication is commonly used to treat Parkinson's. We are hopeful that this medication will at least help with her startling and making her walking more controlled if there is improvement it should be noticeable in the next week or two.

Here is a video of Elizabeth pre Levo-Dopa with Lisa one her favourite physoitherapsits. I would love to hear what other people think of her walking as I have never seen a child with Dystonia walk independanlty.

Rule Breaker

One of our cardinal rules at home is for Elizabeth to leave the plants alone (no digging in the mud, no pulling off the leaves to feed to her animals and to not pull on the branches). Elizabeth has a bit of difficulty with this rule as dirt is a major temptation (still some sensory seeking) for her. So while I was at work Elizabeth convinced Grams that it really was okay to play with the plants and she had great fun arranging her beloved dinosaurs amongst the branches. Elizabeth will not own up to the mud on the floor as it was T-Rex and not her who was digging for bones. The dinosaurs got a good cleaning, as usual they jumped in the bath with her to play in the bubbles.

AVT Graduate

Elizabeth has officially been discharged from Auditory Verbal Therapy (AVT). Elizabeth began AVT when she diagnosed with a hearing impairment (Auditory Neuropathy) at 6months old. AVT teaches children how to listen, process verbal language and how to speak. We have always credited AVT for Elizabeth's amazing language and conversation skills. The best part of AVT is that Elizabeth learned through play and exploration. Making volcanoes (as above) was a way to teach Elizabeth to follow a sequence of steps and reiterate what would happen next and now it is also another way Elizabeth can get muck with her beloved dinosaurs. Elizabeth loved AVT, her therapist's were amazing dedicated professionals whose creativity allowed Elizabeth to learn while she was having fun, it was not work for her.
We knew that her being discharged was inevitable as her listening skills are amazing and as per her last assessment she scored 75% in her receptive language and 98% in her expressive vocabulary. The only saddening part of her latest assessment was her articulation as it scored 6%. This 6% saddens me as Elizabeth has so much to say but many people cannot understand her. Elizabeth is now being followed by a Speech Pathologist for a 9 week block to work on her articulation which is great. Of course the downside is due to her age she will be discharged from the preschool service and will probably receive 10 session a year which is pitiful considering her articulation difficulties. We have a great health insurance plan that covers a lot of her needs but it will only cover 2 1/2 sessions of speech a year (not very helpful).
After great discussions with her ENT and Audiologist we have decided to try an FM Unit. With Elizabeth's hearing loss being unique we do not know how it impairs her ability to hear in all situations. We do notice that in noisy environments she does not hear and we have to touch her to get her attention and speak to her face to face. An FM unit can help her to hear a primary speaker in noisy environments (school, gymnastics, family gatherings, car etc). My fear is that her articulation is not only related to her poor oral motor skills and that some of her articulation difficulties are due to the fact that she cannot hear everything. We will continue to have her hearing checked every 4 months to monitor her closely.
We will definitely miss AVT but it is great that she has done so well and has graduated.

Happy Easter

We have had a great Easter weekend filled with time with our families and too much sugar (in all forms - chocolate, candies, cakes, ice cream, jewelry, eggs). Elizabeth loved her Easter egg hunt and did well with the clues that the Easter Bunny had left. Elizabeth has had a couple of practice rounds to get her ready for the real hunt, eggs hunts can cover so many of her therapy goals so we do them often (I am such a multi-tasker we climb, reach, follow clues, knee walk, use rhyming words etc). By 8:00 am this morning Elizabeth was flying on a sugar high as she had to taste all of the treats left by the Easter Bunny. Her favorite was a chocolate triceratops and after biting his head and his tail off and looking through she declared it a telescope. Elizabeth also was totally excited to go to her favorite play farm to attend their Easter egg hunt. Elizabeth's cousin Madison came with us and the two had fun hunting for eggs and getting their faces painted. We have followed our yearly tradition of taking Elizabeth's picture with her Easter basket, she has come a long way from her first Easter (click here). We hope everyone had a great Easter.

Spring is coming

Spring is finally coming, we are getting some warmer days and buds are forming on the trees. We were able to spend a spring day at a local Maple Syrup festival with our friends Olivia and Avery. The girls had tons of fun tasting maple syrup, learning how maple syrup is made, going on a wagon ride and eating pancakes, sausages with maple syrup. We are looking forward to many more warmer days but of course the forecast tomorrow is snow.