HOPE, PATIENCE, BELIEF AND PERSEVERANCE

We've just returned from our biannual visit to The Institutes for Tatum's second re-evaluation.   Leading up to our visit, I was beat... physically, emotionally, motivationally - I was done.  I just wanted a normal life and a few moments of rest each day.

We had all worked diligently with Tatum for the past 6 months and Tatum still wasn't crawling.   Tatum was doing so many new things - so many great things - but her motor skills were still greatly delayed.   

We arrived at the Institutes on Monday November 11th.   The clinic waiting room was filled with 20 families from all over the world... Guatemala, Sweden, Australia, India, Germany, the U.S. and many more.   Looking around the room, my 'I'm done' attitude began to change.   All of the 'hurt kids' that I recognized were better in one way or many ways.   They all looked healthy and they all had parents with them who believed in their potential so much that they travelled from far and wide to help them reach it.   The room was literally full of love, hope and inspiration.

I realized that in my moments of weakness, I had begun adjusting my belief in Tatum's potential.   I had stopped truly believing that she will walk and talk one day.   I had lost sight of the forest for the trees.   I  was happy about her other progress but I wasn't celebrating it as it should have been because she was supposed to be crawling.    I had neglected to consider that this sweet two year old had broken her femur 7 months earlier and had to rebuild a bone while we were asking her to find her legs, develop her muscles and ligaments and hip sockets.   Sigh.

I'm writing this blog entry to officially celebrate  Tatum's many victories over the past 6 months.

• Physiologically, Tatum is in perfect health.   As with each visit, we are asked to do a myriad of tests including blood, stool, urine and hair analysis.   Tatum's blood, stool and urine results were all normal... and not moderately normal - perfectly normal!   Tatum's hair analysis showed that we were able to flush out most of the heavy metal build up she'd been battling... by feeding her a tablespoon of fresh cilantro each day.   Physiological healthiness means that Tatum is more easily able to get through her very intensive days of therapy.   We saw this in her increased energy levels, improved respiration (boy is she loud!), increased awareness and responsiveness and her 90 days of perfect health.   
• Intellectually, Tatum is doing exceptionally well.  
• She is reading at a 6 year old level and was able to clearly show us that she is comprehending what she is reading as well.   Tatum knows over 2000 words by sight and has been read over 80 homemade books to date.   She loves reading books of all kinds and has clearly told us that her favourite books are about herself and her family.
• We have shown Tatum over 200 'bits of intelligence' which are essentially flash cards.   She is able to recognize and differentiate between the bits.   It's believable to know that she can tell the difference between Fred Flintstone and Scooby Doo but it's remarkable to know that she also knows the difference between an image of John Diefenbaker and Paul Martin or a Dalmatian and a Retriever.
• Communication continues to improve through our use of a 'choice board'.   We are able to ask Tatum simple questions and offer her a collection of possible answers for her to point to until we determine her need or want.   We were introduced to 'facilitated communication' during our last visit and it is blowing our minds!   Tatum has a paper keyboard and is spelling out her answers by pointing to the letters on the keyboard.   Because her motor skills are still under-developed, she relies on me to lightly support her hand and point her finger.   When asked a question, Tatum is unmistakeably directing her hand to answer.   So far she has clearly spelled:  pink, avocado, playground, book, season, and summer.  It is amazing to me that we now know her favourite colour, favourite food, favourite place to go, not to mention what she it thinking about in a given moment.   Mainstream practitioners recently told us that Tatum would not be eligible for any facilitated communication devices until she was 6 or 7.   It sickens me to know that some parents are having to wait so long to communicate with their children.   We are so fortunate for this gift.
• While at the Institutes we were reminded that all sounds are language and that we should respond to Tatum as though we understand that she is speaking to us.  Since putting more focus on this area, Tatum has increased her babbling and now has 3 words of recognizable language... Dada, Ba (basically means she wants to eat or drink) and at long last, Mama (sometimes Mum).
• There is cause for celebration in Tatum's motor skill world as well.   She has become increasing skilled at grabbing and pushing away items as she sees fit.   She is also moving really well on her ramp.   50% of the time, she is pulling herself all the way off and moving a bit on the flat floor.   While working with the Institutes staff we believe we know what we need to do to increase Tatum's mobility and get her crawling.   It appears as though she has the strength, motivation and energy to crawl but she seems to be missing two things:   coordination and a consistent awareness of her legs.   What I love about about the Institutes program is they never throw up their hands and say 'oh well'.   Instead we are going to help Tatum find her legs by building her a standing device.   She will stand upright for 30 minutes each day.   We are going help Tatum's coordination by doubling the amount of crawling patterning we do each day for at least a month.   She just needs more time to receive the patterning.
• Overall, Tatum is progressing 167% faster than she was before we started our program with the Institutes.   She is currently developing at about 80% of the average child.   We are at a bit of a plateau as far as motor skills are concerned but we believe that we will have a crawler by Springtime...  I've asked her to start crawling as my Christmas present but I'll also be OK with a new "World's Best Mom" coffee mug!

This is Tatum's blog and I find myself mostly writing about Tatum and myself but I need to be clear that what Tatum is accomplishing would not be entirely possible without Chris, Riley and Peyton and our loving volunteers.   In our house, Chris (Dada) is the first one to get smiles and giggles from Tatum... always has been.  He brings her into our world with music, play and snuggles.   Riley and Peyton truly adore Tatum.   They greet her in her bed each morning with kisses and hugs.   Both girls practice their own reading with Tatum and are becoming exceptional teachers for their baby sister.     Riley and Peyton will become increasingly involved in Tatum's program in the coming weeks and are excited about learning how to pattern and motivate her to move down her incline ramp.   Riley's grade 3/4 class will be writing some holiday books for Tatum in the coming weeks too!  Our volunteers make Tatum her books and show up to pattern every day without fail.   Thank you all.

I write this blog mostly to help myself remember the good times and that we got the tough times.   I also find that it helps me realize how far we've come.   I'm pleased to share our journey with anyone who chooses to read along.   If you have any thoughts that you want to share, please feel welcome to do so.   I will share anything you like with Tatum and am open to receiving your ideas and suggestions.     Apparently this blog makes it difficult to share your feedback.    Please email me at kimberly.reain@gmail.com if it is easier.

As we wrap up November and the Holidays approach, I'm sure I'll be too busy to write much until 2014.   Happy Holidays to everyone.    Remember to live in the moment and be joyous about today.

I'm signing off with a promise to myself, my husband and my 3 girls.    

• I promise to always be on your team.   
• I promise to always believe in you and your potential.   
• I promise to never give up on you - ever.

Our Work-Life Balance is in process!

I am away for a night, all by myself and here I am writing about my family!!!   Crazy!

My intention in getting away this evening was to ‘get away from it all’, sleep and be selfish for 24 hours.   Easier said than done. 

I’ve spent my day decompressing, which is great but as I’ve removed myself from my ‘chaos’, I am able to feel.   Feel tired, feel sad, feel happy, feel overwhelmed, feel encouraged… 

The biggest thing that I feel is that my family is everything to me.   My husband and my children’s happiness drive my happiness at this moment in my life.   They are my ‘job’ right now and it is the toughest job I’ve ever had.   The thing about my job (and all parents') is that I can’t quit it!  I suppose I could, but I never would in a million years.   On the bad days when I want to throw in the towel, I won’t - no way.   I have chosen the role that I am in right now – mother and wife - because it is of paramount importance to me that I help create good, happy, contributing and experiencing human beings who are the best people they can be.   I want the human beings that I am helping to shape and grow to be good to themselves, good to the world around them and to experience all that life has to offer.   These human beings of course include Tatum.  

Over the past few months, as we’ve been in the trenches with Tates, I’ve come to realize that she and I need more than our four walls and our crazy intense program.   We are not giving it up, we are still doing the Institutes’ program every single day - we are fully committed.  I am just starting to try to figure out how to let the outside world into our days before I lose my myself and she misses out on her childhood. 

The one big shortcoming of the Institutes’ program, from my perspective, is ‘social skills’ development.   The program is so intense that you could (and most days do) spend 8 hours a day, 7 days a week inside your house and not see a soul except for your patterning volunteers.  While investing this time, your child’s brain benefits enormously, it gets better.   The question is, how long can a mom like me or a hurt child like Tatum do the program with this intensity before they burn out or Mom goes a bit crazy?  

Is it reasonable to invest 5 years of one’s life into the Institutes’ program with the hope that your child will get well?   Many families have done it, some have done it for more than a decade.  During this time everything else is supposed to be secondary… Mom’s autonomy, the marriage, the other kids and letting the hurt child experience life outside the home.   Is it reasonable?   I don’t know. 

One thing I know for sure is that Tatum is happiest when she is outside, she laughs and smiles when she is swinging and swimming.   She is most energized when she is with her friends and family.   Her whole body shakes with excitement when she hears the kids in the schoolyard, playground and pool.   She wiggles her toes, giggles and kicks her feet when the wind blows in her face.    Without her words, Tatum is telling us that she likes the same life that we do.  We need to help her get more of it as we help her get well.

This weekend we are starting a new form of therapy called Therapeutic Horseback riding at a farm up in Stouffville Ontario.    While this is still therapy for Tatum, it is going to be something that she does with her sisters.   All of our girls will ride their own horse, in the same arena, at the same time.   We are so excited to do this as a family and to see how each of our girls learns and grows through horse back riding.  The benefits of therapeutic riding are varied and many.  To list a few

• •      Improved self-confidence through risk-taking, and independent movement
• •      Improved muscle control, balance, strength and range of motion
• •      Improved memory retention through learning and remembering horses names, commands and planning moves
• •      Relationship building through bonding with the horse and trainers
• •      Social integration through practicing socially appropriate behaviors such as appreciation, respect, kindness and attentiveness

Best of all, therapeutic riding is fun, rewarding, great exercise and it doesn’t feel like therapy.   What could be better?  Stay tuned for pictures and an update!

All this said, how is Tatum doing these days?  In a word… AWESOME.   She has been healthy, without even a sniffle, for close to 60 days.   She is growing like crazy… 26 lbs and 2 feet 8 inches… right on track for her peer group, maybe even ahead of the curve.   She’s working on some more teeth and almost has a full head of hair.  Her eyes are bright and her eye contact continuous to improve every day.   She will often look into our eyes and tell us a babbling story or listen to our words.   She no longer has a lazy eye.  Her eyes are completely straight 90% of the time.   Her mouth is no longer down turned from low muscle tone.   She smiles wide when she is pleased and giggles adorably.    Most times we have no idea what she is laughing at but we’ll take joy of any kind!   She is chewing her food… big chunks of meat and veggies and eats ravenously.    Tatum wraps her arms around our necks and gives squeezy hugs that are coming close to paralleling those of her big sister, Peyton.   

In the past week, Tatum has started pulling her entire body off of her incline.   She still goes down her ramp about 40 times each day (on a good day!) and now when she gets to the bottom, she actively moves herself toward her target.   She is most motivated by a bottle, snack or a meal so we put them at the bottom of the ramp and she is moving  with intention towards them.   Her most recent victory was last week when she pulled and pushed her entire body off the ramp in cross pattern, grabbed her bottle, rolled over while holding the bottle and put it in her mouth!!  Huge victory Tatum!!!

Tatum’s fine motor skills continue to develop as well.  She is increasingly able to grab toys and book pages and play actively with them.   

In the past few weeks, we have introduced two new components to Tatum’s intellectual program.  In addition to teaching her to read through word flash cards and home made books, we are now teaching her numbers and presenting her with what the Institutes calls ‘bits of information’.  

The math program is pretty basic right now.   She sees 10 numbers each day, 3 times a day.  Each number is seen for 5 days and is then put away.  She is not shown the actual number symbol but instead is shown a series of dots that represent the number symbol.   We’ll get around to teaching the actual symbol later.   For now, this program serves as a visual and auditory stimulation program and it is amazing… she can’t get enough of it! 

The ‘bits of information’ is essentially an image flash card program that teaches her ‘encyclopedic knowledge’.   Again, this is a visual and auditory stimulation program that has the benefit of giving Tatum great information and keeping her interested.   She loves this program too.   This week, Tatum learned about primate, famous buildings and towers of the world and organs of the human body!

Chris and I are heading back to Philly on November 11^th for our 3^rd revisit with Tatum.   We are looking forward to getting our next report card and new assignments.  

Wish us luck finding our new work-life balance!  

Summertime Update!

Blog posts are getting further and further apart... we must be busy!
April and May were tough months to stay motivated and I wasn't really feeling up to writing about our lack of progress.  The broken leg really slowed us down and got us out of our routine.  Getting back into the 'Institutes' routine was very challenging, I forgot how nice it can be just to go out and stroll!  We are still trying to get back to the intensity we were at before Tatum's accident, but we are taking more breaks for the sake of everyone's sanity!   Once the cast came off at the end of April, it became apparent that Tatum had regresses in the mobility department.   Tatum didn't want to move down her ramp at all.   She didn't really want to use her legs at all.   Before the broken leg, she was bearing weight  and standing well with just a bit of support.     When lying on her back, she was able to keep her knees upright and lift her butt.   All of this strength and coordination seemed to be gone... good news is that it is coming back!  May was tough  for Tatum health wise as well.  We missed 10 full days of programming because she was sick with colds and an awful flu virus.  
As she does after every period of illness, Tatum has rebounded with gusto!  She has gained back the weight she lost in April and May (from being in the cast and being sick) and then some.   She has 3 new teeth and the hair on her head is growing like crazy...  she just had her 3rd haircut.
As I look back on my notes for May, although Tatum didn't want to get moving on her ramp, she was up to a bunch of other great things.
Since the beginning of May, Tatum has been sitting really well on her own without any support.   She still falls backwards on occasion and does not put her arms back to stop herself but it is less and less and she is able to adjust and correct her posture when she is losing her balance.
Tatum's fine motor skills have made a lot of progress over the past two months.   She has gone from having no interest in toys or grabbing things to picking up toys, spoons,  and shakers  and shaking them, banging them, throwing them, moving them from hand to hand, reaching and picking things up that are out of her sight and she is occasionally putting things in her mouth.   She is getting very good at reaching her arms out big and wide and pulling us in for big kisses and hugs.    Tatum is clapping her hands when she is sitting, lying down and on her tummy.
She is rolling from her back to her front and back again with ease.
Tatum is also now able to sit up in a swing at the playground and she loves to swing!
Since the beginning of June, we have seen huge progress in Tatum's verbal skills.   She is so loud!   Her volume increases every day.    I have to stop myself from wishing for quiet!  As she experiments with her voice she is telling crazy stories that go on for minutes with lots of inflection and sounds like tha, za, da, la, ba, ah.   She's pretty entertaining - her sisters love the new loud Tatum!   I think she is often yelling me... maybe for feeding her so much spinach and kale!  She loves calling for Daddy and I'm pretty sure our nanny, Len, is her favorite confident!   She is making clicking sounds with her tongue, kissing sounds, zerberts and is also mimicking us when we make her favourite sounds.
The most amazing progress has happened in the past two weeks with Tatum's mobility.    She is moving down her ramp using both of her legs and big wide arms almost all of the time now.   Today, we watched Tatum move herself down her ramp (several times) in what we know as a perfect cross pattern!   If you can imagine a baby crawling, they move their arms and legs in a specific pattern... right arm reaches out, left knee comes in,, etc.   This is what we have been patterning for Tatum since last September!   She is so close to crawling herself off her ramp... we can't wait to get her moving on the flat floor all the time, and to get rid of these massive ramps!!!
So what is the biggest change in our program?  Why are these things happening now?   I think this is the cumulative effect of all of our hard work and Tatum's good health (minus May) which is a result of her super healthy diet.   I think the biggest catalyst has been our new commitment to her respiratory program. We are doing 40 masks every day now.    If we do nothing else, we do masking.    This ensures that Tatum gets rich concentrations of oxygen to her brain every day.   Masking also ensures that we are helping her oxygen tanks (her lungs) get bigger.   We have also starting doing manual respiratory patterning.   We are now doing this for an hour each day and are working up to doing two hours each day once our machine arrives.      Our machine is sitting at Canada Customs right now so we should receive it in within the next week.   Once we get it, Tatum will receive two hours of daytime and 10-12 hours of nighttime respiratory patterning every day.   We are all so excited to see the effect of this on her alertness, energy, eating, speaking, mobility and who knows what else!!   It is going to be a fantastic summer for Tatum and our gang... I can feel it!!

Below are some videos of Tatum from the past few weeks.

Tatum's Groovin' for Movin' Fundraiser

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."  Margaret Mead

This post is LONG overdue!   The past two months have been crazy busy, overwhelming and chaotic for a number of reasons.  As a result, I have not had the chance to write about our amazing event.   I hope I can remember all of the highlights because it was honestly one of the best nights of our lives (for Chris and I!).

We ended up selling about 225 tickets to a collection of wonderful people from our community, Chris's work, our family, longtime friends and friends of friends.   The Holy Eucharist church basement was filled with people mingling, 'stalking' their silent auction desirables, shopping at the regift table, dancing to DJ Tyrone's awesome tunes, listening to our wonderful MC - Liz West and consuming the plentiful food and drinks!   It was an action packed, fun filled event that oozed with community spirit, love, generosity and the desire to get out and have a good time.

The day leading up to the event was pretty busy for the group of us responsible for putting the party together.   We started at around 10am with beer and wine delivery, decorating and the silent auction/re-gift table set up.   We were all done our set up duties around 6pm... it was a full day.

Our guests started slowly filtering in around 8/8:30.  I had a bit of a pit in my stomach, wondering if everyone would actually show until about 9:15... phew, they all came!   Not only did everyone come, but they came and gave and gave and gave AND had a great time.

Our silent auction was an incredible success - huge thanks to our coordinator Gen Z.   Our amazing group of planners hit the streets and ended up collecting close to 120 items!  We had beautiful pottery, artwork, gift certificates from tons of local business, cottage getaways, Justin Beiber tickets, Raptors and Leaf tickets plus some awesome Leaf's tickets in Boston.   We had hotel certificates and amazing golf getaways!   I could go on and on!   We are still in shock, awe and amazement of the generosity of everyone who donated items to help Tatum.

Midway through the evening, Chris and I said a few words about Tatum and thanked everyone for everything they have done to help us along in our family's new journey.  We then showed a short slide show put together by Kate Parson, a graduate student from Centenial College who volunteered her time to help us.  Thanks again Kate!  It was perfect.

Once the silent auction wrapped up, the lights went down, the strobe light went on, the music was turned up and we danced and let our hair down... it was awesome!

When we first started planning the fundraiser, Chris and I had three main goals:

1. To cover the cost of our last visit to the Institutes
2. To raise awareness about what Tatum is working on and to let people know about The Institutes' program
3. To make sure everyone has an incredible time

Check, check, check!!!   Holy cow!   We raised enough funds to cover our costs from our last visit to the Institutes plus pay for Tatum's new 'Respiratory Patterning' machine ($4k) plus cover our next two visits to Philly.    Never in a million years did we expect to see so much success.   Chris and I are so grateful.  Knowing that we don't need to worry about whether or not we'll have enough money to get back for our next assessment and program assignment, takes a lot of pressure off of both of us.   

One day, somehow, we will show our thanks to everyone who has been part of helping Tatum get well.  For now we hope that a simple thank you and an offer to help any of you when you need us will do.

If you'd like to check out the slideshow from the event, click here:

http://prezi.com/z36zmjiz-vcf/tatums-fundraiser/

Visit #3 to The Institutes

Well, we are back in Philadelphia for the 3rd time at the Institutes for Achievement of Human Potential and we are thrilled to be here.

For the weeks leading up to today, we have been very busy compiling detailed reports on everything that Tatum does:

• what Tatum eats each day... with a detailed break down of daily Carb, Fat and Protein intake
• her physiological problems, progress and successes
• her physical problems, progress and successes
• her cognitive problems, progress and successes
• ... and more.

While this prep was taking place, we have also been hard at work planning Tatum's awesome Groovin' for Movin' fundraiser party which is less than two weeks away!   Don't forget to get your tickets!

http://healingtatum.eventbrite.ca

To top it all off and add that extra bit of craziness, two out of three of our kids broke bones last week!

Tatum broke her femur and is in a crazy cast from her chest down to her left ankle.   Long story short, she was picked up by her big sister for a snuggle and it went very wrong!   She'll be out of her cast on April 25th and is tolerating it amazingly.   Riley broke her ankle and tore the ligaments as well only 3 days after Tatum's accident while jumping on a trampoline.   She too is healing well and handling her limited mobility like a champ!  Riley's cast should come off around the 25th as well.

So all this and we are finally here!!!   Today we met with our advocate who sat with us and reviewed Tatum's progress overall.   We are being measured on Tatum's progress and success in her physiological development (diet, growth, overall health), her progress and success in her cognitive development (auditory and verbal competency, visual competence and intelligence) and her progress and success in her physical development (mobility).  By all accounts Tatum is a STAR!   

Tatum has grown neurologically 145% faster than average!!  This is excellent because it means she is catching up!   

Her body is growing well and developing strength.

We started our program with the Institutes in June of 2012, close to 9 months ago.   When we began our program, Tatum was 13 months old but her 'neurological age' was that of a 6 month old.   Her growth rate was half that of an average child (49%).

In the last 9 months, Tatum's has aged 13.3 months neurologically!  This is 145% faster than average.   We have witnessed a 300% improvement in her abilities to see, hear, verbalize, feel, and manipulate things with her hands.    

In the past 6 months, since we started the 'intensive' therapy program with the Institutes  Tatum has grown neurologically 161% faster than average - this is a 329% improvement.

Tatum also received a 'VICTORY' today... she showed us that she can read better than most 6 year olds.   It is so remarkable to even me!    She was so proud of herself as she was showing us what she could, she clapped her hands and smiled.   You might have to see it to believe it but it was very clear to all of us that she knew what she was reading.

Today is April 8th and Tatum is 22 months old (chronologically).  Based on the Institutes measurement system, we were told that Tatum is now at a neurological age of 19.72 months... she is catching up!!!

The area that we have made the least progress with is Tatum's mobility.   This has not discouraged us.  She is building the bridges within her beautiful brain that will get her crawling soon and walking one day.    We will keep working with a focus on taking breaks when we need them, having fun and spending lots of time together as a family.   We've got a long haul ahead of us but we are not afraid - we will get there.  

Our passion and drive for Tatum's development is being fueled by the success we are seeing with our Institutes program and the dedicated support of our family and friends.   Thank you all for helping us keep this all going.   

Needless to say, we have been too busy to write a recent blog post!   Things are going really well for Tatum... she is getting so strong and she is so present, we are having a blast!  

This winter has been a tough one for the Reain household... I don't recall a time when we have ever been sick so often!   We've had coughs, colds, sniffles, sore throats, body aches, fevers, gastro-intestinal bugs, you name it!   We pass it from one of us to the next, get well for a few days and then something new sneaks in and hits us!     I am so looking forward to springtime and getting outdoors in the sunshine.   This said, Tatum has made remarkable progress and has been the healthiest one of our bunch.   It gives me such great hope for what we can do once we have a long stretch of good health!

We are super busy doing our everyday stuff like Tatum's program, getting Riley and Peyton to school, swimming and gymnastics, the house stuff, etc.  

We are also only a month away from Tatum's Groovin' for Movin' Party so I am keeping busy, along with my wonderful volunteer party planners, pulling all of the details together.

If you haven't already got your tickets, click here to buy them now - space is limited!   http://healingtatum.eventbrite.ca

On top of it all, we are heading back to Philly in 2 weeks for our first revisit.    There is a crazy amount of paperwork to be done so that we clearly communicate how our program has been going and what Tatum is up to.   All 5 of us will drive down to Philadelphia this time.   Tatum will come to the Institutes with us on 3 of the 5 days, Riley and Peyton will stay back at our rental house for the 5 days that we are there but we want  them to be a part of our journey - literally and figuratively.

My parents have generously offered to drive to Chestnut Hill, where we are staying, on their way back from Snow Birding in Florida to watch our 3 beauties while we are busy learning our new program and more information about healing the brain.

I'll write more on Tatum's amazing progress soon!!

A few months ago I noted that Tatum has finally landed in her body; that her body and spirit had finally joined and she felt present in the world to us.   Now we are seeing that Tatum is not only present in the world, but she is experiencing the world around her and letting the world know her as well.  She is showing us who she is, what she likes, what she wants and what she is capable of doing.

I'm asked almost daily how Tatum is doing and often what she is doing these days.   When you have a typical child, you might say "she's sitting" or "she's pulling herself up on everything" or "she's taking off her own diaper".   With Tatum it's different.   Everything that Tatum does for the first time is amazing.   We celebrate everything with big cheers, crinkly noses and pictures.   It's interesting that almost everything we congratulate Tatum for doing, we didn't pay much attention to with the other girls.   It's kind of sad  that we took all of Riley and Peyton's small victories for granted because all of the small victories add up and lead to the big ones... they deserve credit too!   It is such a valuable gift to learn how to appreciate all of life's little things.   I now know what it means to do so.

Wikipedia defines Neuroplasticity as "changes in neural pathways and synapses which are due to changes in behavior, environment and neural processes... Neuroplasticity has replaced the formerly-held position that the brain is a physiologically static organ, and explores how - and in which ways - the brain changes throughout life."

We are watching Tatum's brain undergo neuroplasticity daily.   Each day it is so obvious that her neural pathways are connecting in new ways and her synapses are firing faster.   Every day, since beginning our program with the Institutes, we have seen Tatum grow stronger and healthier and most days she has even done something new.

Two weeks ago, Tatum began sticking out her tongue and making 'raspberries'.   Not only is she doing it for fun, but she is also copying us when we do it and thinks it is funny!

Tatum is regularly saying all of the following sounds:  la, ha, na, wa un, ba, da and ma.   We are sure that ba means she's hungry or wants a bottle.   It's obvious that the rest of her words mean something, it is our mission to figure out what that something is!   She loves talking and telling us what is on our mind.   She's getting so good at using her choice board as well.  It is so nice for us to have a way to figure out what she needs and wants and for her to have a way to tell us clearly.

Tatum's core strength is really great.   She is able to sit fully upright in her highchair and likes to pull herself towards her tray.   She is able to sit upright on the floor for close to 10 minutes at a time now.   When she is sitting on our laps and leaning up against us, she is close to getting herself to sitting from a reclined position as well.   

Tatum has started complaining when someone other than Mom or Dad is holding her... it's very exciting to see that she is 'making strange'.   Typical behaviour is good behaviour!!!   She is also occasionally throwing temper tantrums on the patterning table... show us your fighting spirit Tatum!  We love it!

The inclined floor is still a regular part of Tatum's day (40 trips per day).   She is now regularly actively moving towards her needs.   She excitedly wiggles her way down the ramp towards a book or her bottle.   It is so great to see that she has her 'eyes on the prize' and works to move towards it and grab it.   It is still a challenge to actually grab what she is aiming for but she can definitely purposely move herself towards a target. 

While on the patterning table, Tatum frequently gets actively involved in moving her arms, legs and head in cross pattern motion.   It is so obvious that she knows what to do to get moving, she just needs to keep building the physical strength to make it happen.

Today I decided to put shoes on Tatum and see how she is doing in standing position.   She blew my mind.   She's been doing better and better with bearing weight on her legs but I did not realize she was so strong at this point.   After putting on Tatum's shoes I put her in standing position while holding onto her at the hips.    I felt her legs engage and put her footing in a solid position.   I then felt her hips engage, her core integrate with her hips and her posture go completely upright.   I then let go of her hips and held her by the fingers while she held herself in a complete upright standing position.   She's still wobbly but our baby girls can stand up and she is so proud of herself.

We all get so excited when Tatum gets excited.   Part of her 'Vestibular/Balance' program requires us to swing her in a blanket swing style and hammock style.   She loves it and laughs hysterically every time.    Her smile lights up the room and her laugh is infectious.   To me it is a glimpse of who Tatum is deep inside.   One day soon she's going to show the world who she is, deep down inside... I know it.

Fundraising for Tatum

We have started some serious fundraising to help pay for Tatum's therapy! It is both an exciting and a difficult road for us to travel. Chris and I feel very uncomfortable asking for money from our friends and family but the alternative is not an option at this point. If we don't fundraise, Tatum cannot continue to participate in the Institutes' program.

Some people may say, "why not use the resources available to you through the province?". The answer is simple, they will not do enough for Tatum. Traditional programs provided by the Ontario Government will not heal Tatum's brain. She needs the type of program that the Institutes provides and unfortunately, there is nothing like it in Canada.

Our big fundraising intitiative is going to take place in March in the form of a party! We are really excited about our "Party with a Purpose" and can't wait to get out, celebrate Tatum and have a good time while we raise money!

Our second fundraising initiative is an online donation site. We set up this site for friends and family who want to help Tatum but can't be here to physically help her. We are fundraising because we have to. We hope that we will be in a better position next year at this time and will be able to cover Tatum's therapy costs on our own going forward. If we could wait we would but Tatum needs this program today and everyday for the next couple of years.

We hope that our fundraising efforts get us back to Philly in both April and October of 2013 and we also hope we are able to raise awareness for The Institutes' program and the potential that brain injured kids have.

Crowdfunding

Happy 2013!

 We have so many things to be thankful for and to look forward to in 2013, I have a good feeling that this is going to be a great year for the Reain family. We all enjoyed an amazing Christmas break. Lots of quiet family time, tons of outdoor play at the rink, on the toboggan hills, skiing in Collingwood and just playing in the snow. Tatum got a new sled from Santa so she too was able to enjoy some great outdoor time. On top of all of our fun, we managed to get most of Tatum's program done most days! Victory for Mom!

 On a typical day, we have patterning volunteers come to the house at 10am and then again at 2:30pm. Over the holidays, we scaled back the volunteers to just once a day to try to minimize the chaos around the house. When you've got 3 adult patterers, our 3 kids and sometimes 6 other kids in a narrow Toronto home, it can feel a bit overwhelming... for me at least! Our 'once a day' patterning sessions provided Tatum with great programming, Riley and Peyton with daily playdates and Chris and I with great visits with friends and neighbours. We even served up cocktails for our New Year's Eve patterning session!

 Tatum is getting so big and strong. Every day it seems as though her mind is becoming more connected to her body and the world around her. Numerous people have commented that she looks so different these days. The consensus is that her eyes are brighter, her facial expressions are more diverse, her behaviour is more and more typical and she is generally more present.

In the past few weeks we've seen so many victories with Tatum... she is biting, starting to chew, sticking her tongue out and giving 'zerberts'. She is starting to use inflection when she speaks and has become quite vocal and even boisterous on occasion. Her favourite sounds is still Ba but she can also say Ma, Da and Wa and on occasion says 'ba-doe' which clearly means bottle! I'm almost certain that she said Mama two nights ago... I still have chills!

Tatum's overall body strength and coordination improves every day. She is standing quite solidly with very little support and can even stand while leaning on our ottoman for a few seconds at a time. Tatum is sitting for longer periods without toppling over and is beginning to get tricky while she is sitting by moving her feet around and exploring her body and toys with her hands.

We are seeing great victories on the incline plane these days as well. Tatum is frequently moving herself down her ramp with her hands apart and is actively using her upper body, arms, hands and her feet to move herself to the bottom. Just this week, once Tatum reached the bottom of the incline, she reached out with her right hand and pulled herself forward on the flat surface! Yay Tatum!

Tatum's appetite and enjoyment of food is amazing. She loves her 'perfect diet' and so does her body! This winter has been crazy so far for flu bugs, stomach viruses and colds in our house... for all of us except Tatum that is. She has gotten sick, but not like the rest of us. Her illnesses are milder and short lived, a testament to the strength of her immune system. We've had some eating victories in the past week too: Tatum has grabbed her spoon and put it in her mouth and just yesterday, grabbed Riley's apple, put it to her mouth and started chewing and sucking!

Riley, Peyton and Tatum love each other so much. Both Riley and Peyton love helping Tatum, cheering her on and getting and giving sloppy kisses and hugs. We are all so fortunate to have one another. Happy New Year to all.