A Different Kind of Proud

It's been a while since I've updated the story of Tatum's journey.    So much has happened.    This past week I was literally frozen with pride.    I watched Tatum as our beautiful 4 year old girl and marvelled at her strength, courage, personality, and perseverance.   I literally could do nothing but smile and watch her.   I've felt similar grand moments of pride with Riley and Peyton as they've done something like learning how to ride a bike,  performing at the talent show, mastering a turn on the ski hill, etc.   With Tatum it is different... proud of them all, love them all to death - but it's different.

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!

https://youtu.be/MMhMFhgzSaY

Since my last blog update, we have withdrawn from the Institutes program entirely.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.  

Tatum and Puppy (aka: her BFF)

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:

• 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.

Sweet Victory... covered in berries!

Yesterday was such a beautiful day for Tatum and I.  The morning started off a bit rocky... I wasn't feeling well yet was scheduled to have the occupational therapist over to help with Tatum's inability to feed herself.   I ended up cancelling because of how I was feeling but also because Tatum's self feeding wasn't going anywhere and I wasn't in the mood for a reminder of how little progress we had made in this category.  In any event, Tatum and I got to spend a nice quiet day together, just the two of us.   We played and crawled and walked and used the swing.   We did a bit of masking, which we hadn't done in a while and she really seemed to enjoy it!  We also used Tatum's choice board successfully for the first time in a while.   The day was definitely turning around - then came snack time.   I put about 20 raspberries in a bowl with some almond butter coating them for Tatum to eat.   As I've been doing for the past 6 months, I hold the spoon with food on it away from Tatum's mouth and wait for her to come and get it.   Normally she leans in and grabs the food with her mouth but today she grabbed the spoon with her right hand and jammed it into her mouth!   Sweet victory!!!   She repeated this action with every berry until her bowl was empty and her chair was covered and she was satiated!   I was in tears of joy... sobbing... proud.  
This action of Tatum feeding herself meant so much to both of us in so many ways.    It is such an act of independence to be able to feed oneself, to take care of yourself.   For me, it was also a step towards some form of freedom.   Currently, I spend an average of 2 1/2 hours each day feeding Tatum... to think that I will get that time back was overwhelming.   We are a long way from regular self feeding but we have made the first big step and Tatum is well on her way.
To continually do what feels like the impossible and then succeed with this beautiful child is such a lesson in patience, perseverance and humility.  

I can't believe it has been 5 months since my last update.    Our lives have been busy so say the least.  When we returned from Philly in May, we dove head first into preparing our house to sell it!   We staged the house, put it on the market and sold it - all in 2 weeks!  June brought all of the wonderful chaos that comes with end of the school year festivities.   July was filled with the final stages of packing, shuttling the older kids to day camps and finally a week away as a family to breathe!   On August 7th, we moved into our new Riverdale home and life began to make sense again.

When we were last at the Institutes in May, they asked we take a break from the program.  The break was suggested to allow Tatum more opportunity to crawl and communicate plus to give me a break.   Our break officially began on September 2nd when Riley and Peyton returned to school... although not much therapy was done between May and September because of the move.

Many people ask "How is Tatum doing?" and I am thrilled to say that the break from The Institutes program has been incredible for her.

On September 2nd, we committed ourselves to spending as much time on the floor as possible.   At the beginning on September, Tatum was crawling an average of 15-20m per day... always as a result of one of us motivating her to move with a favorite toy or her bottle.    By the end of September, Tatum had a record crawling day at 31 meters!   As of today, Tatum easily crawls 100+ meters per day and is constantly moving to meet her needs.   She crawls into her bed, over her covers and stuffed animals when it is bedtime, crawls to the fridge when she wants her bottle, the stove when she's hungry, the basement door when she wants to go downstairs to play with her sisters and the backdoor when she wants to go outside for stroll.  She crawls out of her room and into the bathroom in the morning when she sees the light on and hears someone in there!  Tatum crawls 4 meters straight to get to her swing in the far end of the basement... then she reaches up to grab it!   A few weeks ago, when our backyard was full of snow and Tatum was fully geared up in a snowsuit, she crawled across the backyard towards the shed where we keep her stroller... I'm guessing she was ready to get going!   Tatum is crawling everywhere, all the time, to get whatever she wants and needs.   Her crawling style is still on her tummy but she now uses her right leg to push herself along and occasionally uses her left leg too.    She has begun to use her open hands to change direction and and pull herself along as well... and often pulls her favorite toy (Puppy) along with her as she crawls these days.    It's amazing to watch Tatum's strength improve, her determination build, her independence grow and her personality flourish.  

We have introduced Tatum to a new form of therapy called the Anat Baniel Method while on our break from the Institutes.    We have done 3 separate weeks of ABM  since the beginning of October.

ABM focuses on helping Tatum's brain do its job better.  Through the application of gentle physical techniques that directly communicate with the nervous system, ABM helps the brain right itself and develop its ability to powerfully and consistently create new neural patterns that bring about successful solutions.   This is yet another amazing therapy form that works on the premise of neuroplasticity.

After 1 week of ABM, Tatum was a different child.   She figured out how to transition from sitting to crawling and is now very close to getting back into sitting from crawling.   Since starting our ABM treatments, Tatum's personality has come to life.   Her desires are very evident.  She is motivated to explore and get her needs met.   So many great milestones have been accomplished since starting  ABM:

• Tatum smiles and laughs all the time
• Tatum is motivated to move... everywhere, all the time
• Tatum is increasingly affectionate
• Tatum makes eye contact... all the time 

One remarkable gift came to us after starting ABM - Tatum became an amazing hugger.   Chris reminded me of something I said to him about 2 years ago,  just after we first learned of Tatum's diagnosis.   I had said "I  hope that we'll be able to hug each other one day".    This was one of many awesome two armed squeezy hugs today. 

One for Daddy too...

Tatum loves her ABM sessions.   She laughs and sings through every session as though it's a 45 minute play date.   It is a very refreshing feeling as a parent to know that your child is learning and progressing without frustration and discomfort.

The combination of Tatum's desire to move and explore (from ABM) and her opportunity to do so (from the Institutes) is enabling Tatum to flourish in many areas.   Her gross and fine motor skills are visibly improving every day.    She is able to pick up a variety of items with a pincer grasp and easily transfer items from hand to hand.    Tatum is able sit with beautiful posture, bum scoot, transition from sitting to her tummy and crawl, crawl, crawl... all by herself!!   With a bit of help, Tatum is able to kneel, pull herself into standing, cruise, stand for unlimited amounts of time and take independent steps with a walker.    In line with each of these progressions, Tatum's vocalizations are ever changing and improving too.    She makes many diverse sounds on a regular basis... sometimes babbling, sometimes yelling and sometimes singing.

We have decided to continue to take it easy (well, easier!) until January 5th, 2015.   As of January, our plan is to slowly get back into the Institutes Intensive program and give it a try again until we revisit the Institutes in May 2015.   In January, we plan to reintroduce Tatum's reading, math and knowledge programs, introduce her new balance (vestibular) and walking programs, reintroduce masking and introduce our new Oxygen program.   While working on this, I also hope to teach Tatum how to feed herself and start seriously working on weaning her from her bottle and potty training.    We've got our work cut out for us!!

The journey continues - we've set big goals for the next 6 months and we have no reason to believe that we won't achieve them!!

Merry Christmas and Happy New Year!

Back at the Institutes!  Visit # 5

We are back in Chestnut Hill, Pennsylvania at The Institutes for Achievement of Human Potential.  This is Chris's and my 5th visit and Tatum's 4th visit.
We are at the Institutes for 5 full days. Today was spent at the clinic being 'assessed' in every way possible.
Tuesday and Wednesday Chris and I spend in a classroom for 9 hours each day.   We will learn about everything from 'How to Grow the Integrative Areas of the Brain' to the 'Study of Seizures - why they happen and how to prevent them'.   The lectures are always very enlightening and inspiring. Tatum will stay with a nanny while we are in class.
On Thursday and Friday we will return to the clinic to be taught our new program.

Our assessment today was fantastic.  Tatum's report card was A++.   She made excellent qualitative and quantitative progress this period.   Overall her growth rate compared to before beginning the Institutes' program is EXCELLENT!

In the last 6 months Tatum's neurological age increased by 6 months!  This is a first for Tatum!   Her growth rate for the last 6 months is 100%!!!    Since our last visit to the Institutes in November of 2013, Tatum's rate of change is 204%.
When we began visiting the Institutes with Tatum in September 2012, Tatum was 13 months old but her neurological age was only 6.4 months.   Her growth rate was 49%.
Since starting our program with the Institutes Tatum's overall growth rate has increased to 87%., an overall rate of change of 178%... so amazing.  We continue to catch up!

Today, Tatum is 35.4 months old... almost 3.    Our assessment rated Tatum's neurological age at 25.72 months - WOW.    Tatum, you are a star.

The Institutes considers 6 different competencies when assessing a child's neurological age.   Below is Tatum's personal competency summary:

• Tatum reads with total understanding (Visual competence)!    The average child can do this at the age of 6 years.  Tatum received an 'Understanding Victory' for this accomplishment today which means that she is at the top of the Institutes' developmental profile in this competency category and that she is performing above her age in 'understanding'.
• Tatum has an understanding of at least 2000 words and simple sentences (Auditory competence).  The average child can do this at 3 years of age... we love being average!
• Tatum is able to determine characteristics of things by tactile means... for example she knows the difference between a bean and a soother by feel.  The average child can do this at the age of 3 as well.  (Tactile competence)
• Tatum is able to move her body in prone position (on her tummy).  The average child can do this at 2.5-5 months of age.   We have been stuck at a newborn level in this category for 2 years so to move up in the Mobility category is a huge victory for Tatum!
• Tatum is able to make at least 2 words (but less than 10) of speech used spontaneously and meaningfully.   In the past 6 months Tatum has regularly said 'hug', 'all done' and 'up'.   This adds to the word she was previously saying which was 'Dada'.   (Language)
• Manual competence is still a work in progress but Tatum is getting closer to picking up things in a pinch!

Being back here is motivating and inspiring for Chris and I and it always fuels my fire.   The affirmation that Tatum is progressing in a very positive way makes me want to keep at it!   Seeing the other children in the program beating all odds is mind blowing.   Today we met a little boy who is likely 12 years old crawl his way from the front door to his seat.   He crawled with a smile on his face and was so determined!   We also witnessed him speak fluently in English, French and Spanish!  Another little boy was very off balance 6 months ago and his eyes constantly flickered back and forth... today his eyes were perfectly straight and bright and his balance was incredible!   Today was a good reminder to me that it is not time to pack it in... it is a good time to find the strength and energy to keep driving towards healing Tatum and helping her be the best she can be.

Tatum has been finding great joy in 'cause and effect' activities lately... this was on our drive home from the Institutes today.   Very appropriate!    Yay Tatum!

https://www.youtube.com/watch?v=tNRhkdZNvWg

Spring Shift

Tatum is saying HUG and reaches up with her arms to be picked up and held.   What an amazing gift.   About 12 months ago I started longing for Tatum hug me and hoping that one day she would.   Today she is able to hug so tight it excites her!    The crazy thing is, now I want more.  I want more from her, more for her.    Don't get me wrong, I love the hugs.   I never want the hugs to stop.    Today I long for Tatum to crawl with strength and endurance everyday until she gets up and walks.     Not too much to ask for?   I just wish I could reach a point where I am totally content with how Tatum is today and know that every day that follows will be okay and probably even better.

Tatum started crawling (military style) on February 22nd - that was our 9m day.   Since then she has crawled every day... sometimes 1m, sometimes 5m and sometimes even 10m.   Her crawling has changed over the past month and a half - she is getting her bum in the air on occasion, she is even sometimes pushing up on straight arms, she is beginning to push with both legs and pull with open arms from time to time.   Crawling for Tatum is so difficult but she is doing it and every day is better than the last... even when she refuses to crawl more than a meter.  

Wanting Tatum to crawl with strength and endurance every day IS asking for SO much from her. This week she has been teething and is working through some growing pains in her hips so this week, all she wanted to do this week was stand up tall and roll over any time she was on the floor.   Again - totally crazy but rolling over and standing are two things that I used to long for her to do but the fact that she wouldn't crawl this week really got me down.   I am searching for contentedness!  Can anyone point me in the right direction??? This week has left me feeling like I need a break, she needs a break and wondering how long the two of us can manage our crazy schedule.   Sigh.   Next week, when she starts crawling again I'll stop feeling defeated and start celebrating again.    I am truly losing my mind in case anyone was wondering.

 We are doing some things differently these days... I think it is Springtime that has brought many of these changes about.   We need a change, we need to lighten things up!  We are spending lots of time outside and it feels so good... even though it means cutting into therapy time!   Today, we took all three girls and three friends to the corner store to get popsicles (Tatum had her almond milk, no popsicles for her yet).   Tatum sat up tall in her stroller and grabbed her bare toes as we rolled along.   She was so happy.  She makes this crazy voice that sounds like an Australian Didgeridoo.   Google it and you'll wonder how she makes the sound!   Anyway, she had full conversations all the way to the corner store in her 'crazy voice'!

We've started doing swimming lessons with Tatum.   She kicks her feet and pulls her arms through the water - she loves swimming!   It comes very naturally to her.   It's amazing how well she floats and trusts that she is ok in the water.   The joy I have felt swimming with Tatum over the past two weeks is so pure and so wonderful, I know she is feeling this same joy.  Riley and Peyton love watching Tatum learn to swim and I love watching them get so excited with every new experience she has.  

We've also started a new Mom and Tot class every Friday morning run by the March of Dimes.   This class is therapy, but it is different.   It's called 'Conductive Education' and the therapy is focused on helping the children they work with gain independence in all aspects of life through song and play.    I've only attended two classes with Tates so far but I have cried tears of joy at each session - the first time I cried simply because we were playing.   Tatum is almost 3 and I realized that day that we have been too busy with therapy to actually play.  The second time I cried watching Tatum finger paint.   I thought she didn't like wet stuff on her hands, but she loved finger painting.   The CE conductors are working with me to help her learn how to drink from a sippy cup, use a a potty, crawl, walk, climb and play.   It really feels like a great place to be right now.  The March of Dimes is currently working on turning the facility where we attend these classes into a private school for kids like Tatum who learn differently.   It would follow the Ministry of Education's curriculum but it would be taught to the kids in a way they could truly learn.   Daily Conductive Education therapy would be part of the curriculum as well.   We are hopeful that they are successful in establishing this school which is proposed to be a JK to Grade 6 school   It would be a great option for Tatum and it is only 4km from our house!

Interestingly, as we've started doing all of these new things, Tatum has started acting her age in many ways!   Ohhh, the tantrums she has thrown!   She is laughing more, smiling more, playing with us so much more.  She is stronger in mind, body and spirit.   

The question Chris and I have now is, "How do we do the Institutes' program, the Medek therapy that we have been doing, this new Conductive Education Therapy AND have a life?".  Something truly has to give or we will all crack.

We head back to Philly for our 5th visit and we are hopeful that we will be inspired enough to keep holding on and working hard.   Tatum is doing so well and has come so far.   We know this is largely due to all of the work we have done through the Institutes' program.   We are afraid to quit, but we are afraid to keep going at this rate.  

So many questions.

Thanks for reading and listening to me vent... apparently I had a few things to get off my chest!

Below are a bunch of photos from our winter, which was pretty awesome!  Also attached is a great video of our amazing girl in action.

Tatum is Groovin for Movin!

Last night, Peyton and I had a sleep over... this is when I get to share a tiny corner of my big bed with one of my beautiful children wrapped around me in snuggling bliss!   When we woke up, Peyton looked at the clock and it was 7:11.   Apparently, when it is 7:11 you MUST make a wish - so we did!   I wished that Tatum would crawl today and watch the video on YouTube to see what happened!   Click on the link below.
Don't mind my incredibly excited/happy tear filled voice in the background!   Today Tatum crawled close to 10m over the course of the day... huge victory for Tates.    I am so excited to see what we can accomplish tomorrow.  

http://www.youtube.com/watch?v=D5gC0qEX5B8&list=FL2ryKziHg9EVCrhPjruePLg

Yesterday, Tatum and I went to Sterling Hall School to thank a group of grade 6 boys for creating homemade books for Tatum's reading program.   We were blown away to have received over 50 beautiful books made with such care, creativity and attention to detail.   Tatum and I were invited to sit with the boys in their library where we talked about who Tatum is, how her brain is different, what we are doing to help her get well and so many other topics.   The boys had many questions that sparked great conversations.   We also discussed how it feels to be different in typical world and the fact that many people stare and wonder when they see someone who acts or looks different.   I asked the boys to consider the most polite way to enquire about what they were wondering and then ask instead of staring.
The afternoon left me and Tatum feeling supported and understood.  
Although the purpose of our trip to Sterling Hall was to thank the boys, I think what the boys did for Tatum felt good to them... it seemed as though they were thanking Tatum for the chance to help her.   What a lovely day.

Tatum's development has taken a huge positive turn since late November.   She is so interested in moving her body.   When she is being held, she is able to move so that we know how she wants to be held... facing in, facing out, snuggling, etc.    She is also crawling (inchworm style) anywhere between 6 inches to 2 feet each day.   It really just depends on how much time she has on the floor.   If she is on the floor these days, she is moving!    She can turn herself completely around in a circle and she can move herself forward by pushing with her legs (bum in the air) and then pulling with her arms.     Inch by inch, she is finally moving!!!  
Tatum is also standing very strong and tall with very little support.   She is able to push herself into standing from my lap and remain standing for minutes while holding onto a table or my hand.   Recently she has begun taking the occasional step (with a bent knee now less) without any coaxing from us.   She is still supported but her legs want to move!!!
Tatum's babbling is constant and loud!   Sometimes she just won't be quite!   I have been known to pop in her soother just so I can get a word in!   She is making new sounds every day and we are uncovering the words within her sounds as well.   We know the sound for hungry is 'un',  Daddy is 'dada', up is 'uh' and the list goes on.    Tatum and I are getting better at using her facilitated communication board together.   So far she has spelled out for me:   book, yes, milk, seasons, summer, carpet, eat, walk, bits, read, bottle and hungry.    She is truly remarkable.   She has also begun looking at things to get her point across.   For example, she stares at the door each morning until I tell her who is coming to help out and stares at it at night until I let her know when Daddy will be home.  
We are all so proud of Tatum.  Riley and Peyton constantly share Tatum's accomplishments with their friends and share in the joy of each new sound she makes, inch crawled, step taken, whatever.   I love that we are teaching our kids to celebrate everything without it having to be a parenting lesson... it feels fantastic for it to be so organic.