It has been a while since I have done an update mostly because we haven’t had much help around here until recently so my time was limited. I have finally laid down the law with myself and started getting outside with Shira no matter what the weather is like. I have purchased a down mummy sleeping bag from Mountain Equipment Co Op which works fantastically for Shira and her equipment. I am able to run her food line and Oxymeter chord through the double zipper at the bottom of the bag. This allows me to put Shira in the bag and completely cover her from head to toe with nothing exposed thereby allowing us to venture out below 4 degrees Celsius. Last year I was putting Shira into a snow suit which sometimes would give me a nervous breakdown by the time I was finished getting her into it. It’s hard to put someone that can’t move their limbs into such a confining space. The sleeping bag just unzips and I lay her into it and zip it up and go. We also have really great rain screen protection for the stroller so we are set now and have been out every day rain or shine. Today we went on a 4 hour walk. During our walk we went through Mt. Doug Park a 400 acre park with a mountain a block from our house. While there we ran into lots of people with dogs and 5 people on horse back. Shira loves horses and dogs so it took us some time to get through the park. There is a 60 mile paved trail through Victoria called the Galloping Goose trail. Once through the park we took the trail through farm land, a sub division and finally to a strip mall and did a bit of shopping and picked up a video for Shira and then made our way home. Some days we go out in the pouring rain and Shira seems to really enjoy it. The rain can be a little challenging when suctioning Shira in her stroller but we are able to manage with only getting slightly wet.
It has been a while since I have done an update mostly because we haven’t had much help around here until recently so my time was limited. I have finally laid down the law with myself and started getting outside with Shira no matter what the weather is like. I have purchased a down mummy sleeping bag from Mountain Equipment Co Op which works fantastically for Shira and her equipment. I am able to run her food line and Oxymeter chord through the double zipper at the bottom of the bag. This allows me to put Shira in the bag and completely cover her from head to toe with nothing exposed thereby allowing us to venture out below 4 degrees Celsius. Last year I was putting Shira into a snow suit which sometimes would give me a nervous breakdown by the time I was finished getting her into it. It’s hard to put someone that can’t move their limbs into such a confining space. The sleeping bag just unzips and I lay her into it and zip it up and go. We also have really great rain screen protection for the stroller so we are set now and have been out every day rain or shine. Today we went on a 4 hour walk. During our walk we went through Mt. Doug Park a 400 acre park with a mountain a block from our house. While there we ran into lots of people with dogs and 5 people on horse back. Shira loves horses and dogs so it took us some time to get through the park. There is a 60 mile paved trail through Victoria called the Galloping Goose trail. Once through the park we took the trail through farm land, a sub division and finally to a strip mall and did a bit of shopping and picked up a video for Shira and then made our way home. Some days we go out in the pouring rain and Shira seems to really enjoy it. The rain can be a little challenging when suctioning Shira in her stroller but we are able to manage with only getting slightly wet.
The other big news in our life is that our Occupational Therapist has arranged and organized a preschool for both Shira and another younger girl with SMA Type 1 named Charlotte. The class is formal and takes place at the Queen Alexandra Rehab Hospital once a week. The class room is closed off and cleaned on a Friday and not re opened until the Tuesday of our class for our class. This is to ensure that the room is germ free. Shira is loving the classes and being around other people. Shira is so enthusiastic about learning. Shira is only 3 years and 5 months old but she knows her whole alphabet upper and lower case, can count to 20 and 10 in Hebrew, knows her Aleph Bet (Hebrew alphabet), prayers in Hebrew, and can spell if you sound out the word. Shira is a smart little girl and has a deep desire to learn. Shira is also extremely playful and loves to spend time playing dress up, do arts and crafts, play make believe with Sammy her brother and she loves sports. Shira loves baseball!!! I can’t wait for summer again so we can spend day after day at the baseball diamond. Anyways back to school. So at the school either Shira’s Occupational Therapist or her Physio Therapist are there to assist the Teacher. Shira loves his teacher Susan and is totally into the concept of school. With all my justifiable complaints about the antiquated conventional medical system I have to say that the school and arrangements made for germ control are really first rate. I have to give the credit to Susan our Occupational Therapist she has really done a fine job arranging all of this and really put something into place that has really increased Shira’s quality of life!!!
Tonight Maxine was out performing as an elf at a mall that was doing a fundraiser for children’s hospital so I was at home with Sammy and Shira. Sammy is so great with his sister giving her hugs and kisses and calling her sweety all on his own. Shira just loves Sam. Shira beams a brilliant smile when he kisses her. Sammy loves kung fu panda and we were on the web site and he explained the whole movie to Shira and who and what all the characters can do. It’s really beautiful to watch how gentle and loving he is to his sister. I’m very proud of my son! It’s amazing to watch how such a young boy can be so sensitive, understanding and aware of Shira’s needs. For many of you that haven’t met Shira she is very weak and for a reference point is extremely disabled. The only description of Shira’s care that makes any sense is Dr. Bach’s “Intensive Multidisciplinary Care.” 24/7 one on one care with eye contact. My son is so aware of how fragile she is. It just makes your heart break with the most expansive breadth of joy and the deepest darkest sadness all at the same time. I can hear Shira singing a Hebrew song in the room next to me over the monitor as I write this. Shira is on her BiPAP (Bi level Positive Airway Pressure) or non invasive ventilator so I can leave the room when she is on her Oxymeter which reads her vital signs and has an alarm should she crash and I can see her in our video monitor. Ok, Shira is about to sleep and then I will relax doing something mindless like watch t.v. Have a good week everyone and thank you for checking in!!
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