A Sunny Day in Three Hills Town

It is another beautiful fall day in Three Hills. We have been truly blessed this week and not only by the weather - there is something to be said for driving into Calgary with the sun shining instead of blizzard conditions. Well as I mentioned, Monday Ella had her Eye appointment. I initially wondered how they would manage to check the sight of a 5 month old. It isn't like she can read out the row of letters. Don't get me wrong, she is very advanced for her age, but that would put her beyond her brother and well, let's just say, that would not go over well. Despite my skepticism however, optometrists have their ways...go figure. The good news is that Ella does not have cataracts, which tend to be common for children with Down Syndrome. Of course that means no surgery to remove them. She does have astigmatisms in both eyes, but who doesn't really. They aren't too bad but a bit worse than they like to see. all this means is that they will monitor them and she will have a followup appointment in 4 months. Then, when she is old enough to keep glasses on they will write her up a prescription. Astigmatisms tend to stay the same or sometimes can even improve and unless there disease in the cornea do not tend to get worse. Good news and we will hope for the best.

Wednesday, I came down with the flu or swine flu or just a wicked cold that kept me in bed for a couple of days and I was worried that we wouldn't be able to go to our appointments on Friday. Luckily, by Thursday afternoon the fever was gone and I was feeling much better.  They said it would be fine if we came in and I might just have to mask up. Half of our appointments however, were cancelled due to sickness on their end. So we started the day off with a greeting from Donna (the clinical nurse for the Down Syndrome Clinic) and we weighed Ella and took her measurements. She is now at 13 lbs 9 oz  and 65 cm which puts her in the 75th percentile for both height and weight. Way to go Ella! We then met with Dr. Prince, our developmental Pediatrician. Not much to report and let's try to keep it that way. Ella is beautiful and healthy and he had no concerns. Our next appointment was with the Social Worker. She is there to keep us informed about programs and services available to us and to advocate on our behalf for anything we might need. We have tried to be fairly proactive with Ella's programming and have made an effort to make it out to the Down Syndrome Clinic drop ins and Ups and Downs coffee mornings. I have also made initial calls to other programs and inquired into much of the financial aid available, so needless to say, this was a short visit as well. Our final appointment was with the Dietician. Because Ella is breastfed, this meeting, too, was quite brief.

We were unable to see audiology and hopefully will have an appointment for that on November 27th along with our Physio therapist (who was also sick) and Occupational and Speech therapists (these positions are currently vacant and they are waiting to be posted and filled- this is dependant on the Alberta Health Services).

Thank you to all of you for your prayers and when it isn't such a sunny day, I will tell you a little bit more about what's been going on in our lives.[gallery]

National Down Syndrome Awareness Week

Yesterday marked the start of National Down Syndrome Week. To be honest I am not really sure of what that means to me or us. The thing about Down Syndrome is that it is not like diabetes or cancer where the organization primarily raises money to find a cure. You cannot erase an extra chromosome from every cell in the body and therefore Down Syndrome will NEVER have a cure. Likewise, it has always existed. So the National Down Syndrome Society instead seeks to promote awareness and equal opportunities for individuals with Down Syndrome. We have come leaps and bounds in even the last 20 years. Truthfully, their work has probably played a part in my own view of individuals with disabilities and, as a result, in my own small little world I feel Ella has all the same opportunities as Jakob.

Because of the uniqueness of Down Syndrome compared to other “disabilities” I find myself unsure as to how to respond to things like purchasing calendars (which I think Ella will be in) or other propaganda or promoting National Down Syndrome Awareness week. What do I want/expect people to do? First and foremost Celebrate! This week is to celebrate the contributions that individuals with Down Syndrome have made and to recognize that they have abilities and aspirations like any other.

A word that often comes up is ADVOCACY. The Canadian Down Syndrome Society is the voice of individuals with Down Syndrome and is therefore the voice of my Ella. Be an advocate and stop discrimination towards these individuals. That being said I must reiterate that we have been so blessed by incredibly supportive family, friends and strangers that love Ella all the same. Thank you.

www.cdss.ca[gallery]