Here's the prelude:
Tatum participated in the March of Dimes Conductive Education camp for two weeks in the morning, ending last Friday. Every day I would drop her off and she'd be very excited to go. When we got to the door of her classroom, she would hug me tight and smile the biggest smile. I'd place her on a stool just inside the door and she'd sit, with perfect posture, feet flat on the ground, no straps or harnesses, no back rest - pride.
I'd then offer her a sip of her milk before I left. She'd grab the milk container with both hand, put the straw in her mouth without my help and sip away while tapping her feet and fingers and truly enjoying her drink independently - pride.
When Tatum was done her milk, she'd reach up to me and wrap her arms around my neck and pull herself into standing position all by herself. She'd hug me and smile and melt my heart - pride.
I'd then turn Tatum towards her teachers and watch her walk into her classroom (yes - walk), willingly, confidently and with very little coaching - so much pride.
All of these actions are taken for granted when we have typical kids. It's pretty special to witness and appreciate these moments and to feel it all coming together for an incredible kid.
It was about 3 years ago when a doctor from Sick Kids Genetics told us of Tatum's likely genetic anomaly. She said that kids with Pallister–Killian syndrome are very rare, so it's hard to say what the future holds. There are only about 100 documented cases in the entire world. She also said that most of the kids with PKS never sit or move independently and most of them do not speak. I'm looking forward to making our way back to Sick Kids to add to their research findings with this video.... check it out!
It was about 3 years ago when a doctor from Sick Kids Genetics told us of Tatum's likely genetic anomaly. She said that kids with Pallister–Killian syndrome are very rare, so it's hard to say what the future holds. There are only about 100 documented cases in the entire world. She also said that most of the kids with PKS never sit or move independently and most of them do not speak. I'm looking forward to making our way back to Sick Kids to add to their research findings with this video.... check it out!
Since my last blog update, we have withdrawn from the Institutes program entirely. The program took us so far, now it is time to take another road. It became more of a distraction in our life as a family than a positive focal point. It was too difficult for me to manage the lives of the 3 girls, our family's needs and an 8-10 hour a day therapy program. After taking time away from the program for 6 months, both Tatum and I realized what it felt like to live life and we both really liked it! Tatum has flourished over the past 6 months in so many areas. Being able to explore different environments, be around different people, being allowed to be curious and bored and trying new therapies have all been so beneficial.
We have continued to participate in monthly intensive treatments of Anat Baniel Therapy with Judy Cheng in Toronto. Tatum loves it and continues to improve with each session.
Tatum is crawling (still on her tummy) all over the house to get where she wants to go, usually dragging her puppy with her! If Tatum sees something that she really wants on a raised surface, she is able to push into 4-point position, get into sitting and pull herself up into a kneeling position while holding onto something like the couch, the tub or her water table. With each 4-point push up, I can see her balance, stability and strength improve and can envision her crawling around the house on all fours very soon.
She crawls over pillows, bolsters, toys, blankets, across carpets, concrete and astroturf!! Her stamina and endurance continue to improve.
At the beginning of June, with the help of our friends at the March of Dimes, Tatum started the early stages of potty training. We are seeing great success each morning as she wakes up, mid morning and intend to continue adding scheduled potty breaks to her day as time goes on. I love her little grin as she sits and waits for me to discover that she's gone - she's as proud of herself as I am!
Some other big firsts have happened for Tatum over the summer break:
We have continued to participate in monthly intensive treatments of Anat Baniel Therapy with Judy Cheng in Toronto. Tatum loves it and continues to improve with each session.
Tatum is crawling (still on her tummy) all over the house to get where she wants to go, usually dragging her puppy with her! If Tatum sees something that she really wants on a raised surface, she is able to push into 4-point position, get into sitting and pull herself up into a kneeling position while holding onto something like the couch, the tub or her water table. With each 4-point push up, I can see her balance, stability and strength improve and can envision her crawling around the house on all fours very soon.
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| Tatum and Puppy (aka: her BFF) |
At the beginning of June, with the help of our friends at the March of Dimes, Tatum started the early stages of potty training. We are seeing great success each morning as she wakes up, mid morning and intend to continue adding scheduled potty breaks to her day as time goes on. I love her little grin as she sits and waits for me to discover that she's gone - she's as proud of herself as I am!
Some other big firsts have happened for Tatum over the summer break:
- watched her first feature film in a theatre with the whole family and loved it! (Inside Out)
- learned how to drink from a straw - no more sippy cups or bottles!
- swam in a pool with a floaty on and nobody holding her
- rode the rides at Centreville and loved them all (Froggy drop, Log ride, Carousel, Scrambler, Bumble bees)
- rode a pony without anyone holding her on (amazing core strength!)
At the end of July, we were introduced to a man named Mohamed Mohamed in Brampton. He is a speech pathologist with a specialty in orofacial myology. He helps people learn to use they face and mouth muscles effectively so that they can speak and eat independently. Mohammed's treatment is intensive, as is anything that works! We have seen him for 12 sessions over the past 3 weeks and are seeing great improvements with Tatum's swallowing, speech, facial expressions and facial sensitivities.
Normally, teeth brushing is a full contact activity with Tatum... we literally have to pin her arms down and stabilize her head! Since seeing Mohammed, we have had regular success brushing her teeth while she sits on our lap! She even opens her mouth for the toothbrush! Before Mohammed, Tatum's tongue still had the 'thrust' reflex so when food was put in her mouth, her tongue would block the spoon and only go in partially. She's now flattening her tongue and allowing the spoon in fully. We'll continue to work with Mohamed to help Tatum improve her chewing and work towards consistent self feeding.
Tatum is experimenting a ton with sounds as well. She mimics and babbles sounds like sssss, zzzz, da and ga regularly and has mimicked 'ca', 'pa', and 'mum' while with Mohammed.
In addition to all of this great progress, we have seen that Tatum is smiling all the time. She's always been a happy girl but now she can show the world with more ease. I see Tatum stop and listen as Mohammed makes sounds in her ears. You can see her mouth and tongue working to figure out how to make that sound herself. It's amazing to see her joy when the sound comes out, just like she planned!
As our geneticist told us, it is hard to tell what the future holds for a kid like Tatum. I'm pretty sure, it holds a whole bunch of awesome! We are all so excited to have Tatum more present, verbal and actively involved in our family life.
Tatum starts school with the TDSB on September 8th in Junior Kindergarten. Stay tuned for more amazing progress reports and of course, her first day of school photo.
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