Dystonia

As per our last visit with Elizabeth's Movement Disorder Neurologist dystonia is the the new diagnosis. She feels that Elizabeth is not Ataxic at all or low tone but her movement difficulties are due to dystonia. Despite us thinking she is really improving she feels that Elizabeth is significantly impacted by dystonia. As the Sinimet made her worse she wants to try Artane, this medication has to be gradually increased and results may not be seen until optimal dosage (in 3 months), she feels that Artane may help alleviate some of her symptoms and improve her speech. She also feels that in the future we should think about Deep Brain Stimulation as it has shown to have amazing results with dystonia. I have read about DBS in the past but did not think it was offered in Canada but it is completed at Sick Kids and her Dr. thinks Elizabeth would be a very good candidate. The earliest DPS can be done is around 7 years which is good as it gives us lots of time to contemplate whether brain surgery is appropriate as it is something we can't even begin to think about. The Dr. feels that we have to address her dystonia as she will encounter bony changes to her spine and legs if not addressed. We do see changes to her Rt. knee and it is causing a fair amount of pain so we are seeing the Orthopedic Surgeon soon. We ended the appointment with spinal x-rays which were a bit humorous as it requires Elizabeth to stand still which is impossible even with 2 adults holding her still. Once again she milked a toy from me from the hospital bookstore as she so so good that I could not say no.

Mischievous

Elizabeth looked at me mischievously one day and said 'Mom I am mischievous' and we agree. We are always finding things out of place that she has gotten into. From finding her Pet Shop toys hanging from our blinds, her socks stuffed in the toilet paper roll, my lipstick hidden in a jewelry box and her draping her clothes on the tree branches. I also found her sitting in a pile of hair as she gave herself a nice set of layers on her hair, it was quite an even cut that now hangs in her eyes. I could only laugh when I saw her hair as it is something that all little girls do and it wasn't too bad of haircut.

End of School

This post is about 1 month late but summer has been flying by and I keep forgetting to post about her end of school meeting. As usual we ended her school year with a case conference; her pre-school teacher, her resource teacher, her occupational therapist, her speech pathologist and her new teacher were present. Elizabeth had a great year as usual and we are very happy with her placement in her pre-school, I like the low ratio (1:8), gross motor time and that it is a laid back environment where Elizabeth can play and learn.
Throughout the year I have had some concerns with the work that Elizabeth brings home as it is scribbled and not what she is capable of doing at home with me or with her OT, I have thought it odd that Elizabeth never sings a song from school and that she never talks much about playing with a friend. We discussed her work that she is doing at school and where she is having difficulty and the areas are fine motor tasks and seat work activities her difficulties are due to her fine motor delays, inadequate seating, overexcitement and distraction. I know these are areas where Elizabeth has difficulty and I have been saying this for the past couple of years and have been fighting for appropriate OT services, I have said she needs a proper chair for years, I have said she is extremely distracted but yet her therapist feels she should be discharged OT services when she is in kindergarten.
Her difficulty with playing with others came up again and I do not know what to do, her play is different from others, she can fixate on being a dinosaur, a bug or a bat and if not really pushed and scripted for appropriate conversations she is off on another tangent. Elizabeth tells me that she plays on her own and no one wants to play with her. Her teacher says she has her own agenda and will do or play with whatever pleases her and is happy to be on her own but it kills me that she does not have a friend at school.
As for singing her teacher says she will not sing with her class which is odd because at home and in the car she sings constantly (she does have great difficulty saying the right words but she carries the tune). Once again I think it is her hearing; she cannot hear what is being said with all the other children singing.
All in all her meeting had me really upset; she has trained staff who are to be watching out for areas of delay and dealing with them and yet how did so much go unnoticed? There are strict rules about parents not being present which I think I will bring up next fall as I could point these things out immediately and ensure they are addressed if I could occasionally observe.
The plan for next year: a proper supportive chair, an FM unit so she can hear her teacher primarily and to time seat work activity when there are less distractions. I think this is going to be the beginning of learning difficulties for Elizabeth and the more academics that are introduced the more difficulties are going to come up and it is something we will need to stay on top of to ensure Elizabeth can learn which we know she is very capable of.

Accomplishments continue

Over the past couple of weeks we are completely in awe of Elizabeth's improving stability and balance. We were at the park and she amazed us again with being able to climb up the climber on her own. I don't know what has changed in her little brain but something has kicked in and she so stable. Her falls are maybe once a day and the other day she walked over large rocks and maintained her balance ALONE. We are so proud of her.

A quick getaway.

We are back from a brief getaway at my parents trailer. Elizabeth is the happiest child there, it really is a nice break for her to get away. I try really hard while we are away to not worry about working on her printing, speech and all her other homework which is really hard for me. The weather was a bit cool at times but we were able to go swimming, play in the sand, fly her kite, eat smores by the campfire and enjoy company from her best friend Owen and her Aunt Maria. Elizabeth still seems to be the one to catch the most fish and enjoys reeling them in but her most favorite thing is to play with the worms we use as bait. While we were away I really was amazed how good her walking has gotten, she is handling obstacles (potholes, rocks, uneven ground) effortlessly and is even climbing hills on her own. It is taking me a lot to get used to as I am ready to catch her and now I am not catching her as often which is super amazing. All in all we had a great time together as a family and am looking forward to another week getaway in August.

CME Medek

Time with Ramon Cuevas

The Inaugural Pair

Elizabeth received her new AFO's and loves them. I noticed the pattern on another girls AFO's in a clinic I work in and I had her Orthotist hunt down for the pattern. As her Orthotist has a soft spot for Elizabeth he searched and made their first pair of lady bug AFO's. When we picked them up the Orthotist had her show them off to the staff in the workshop and all Elizabeth could say was 'Gord your workshop smells something awful' (the smell of the glues are pretty bad). Everyone keeps commenting on how cool her new AFO's are and I agree as well and if you look close you can see she actually has sandals that fit over them which totally makes my day.