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.

Month Two Update from the Institutes

I spoke with our new advocate from the Institutes today. She is a lovely Japanese woman named Rumiko Doman. She had reviewed our program notes, Tatum's detailed physiological report which included all progress and challenges she has had in the past month as well as a detailed description of what she's been eating. By all accounts we are doing a fantastic job and we should be proud of ourselves and Tatum's progress.

We sent videos to Rumiko of Tatum being patterned, doing her masking, going down the incline, doing her balance exercises, reading and holding her dowel. She was pleased to see Tatum's increased strength and coordination in her upper body. She also marvelled at how happy and healthy our baby girl appears to be! In Rumiko's opinion, we are on track to reach the goals that have been set out for us by April/May! I'm going to trust the expert and look forward to Tatum moving independently on a flat surface by early summer! Yay Tatum!!!

I can't believe it's been more than a months since I've taken the time to celebrate Tatum's progress!

On November 23rd, Tatum sat up on her own for the very first time. There had been times where she had sat for 5, maybe 10 seconds but this was different. Her body felt very strong that day and very integrated. When I placed her in sitting position, I could tell that something was different this time. She sat, with perfect posture for minutes on end and even sat on the couch with her sisters to watch a movie that night! Over the past few weeks, we have seen further improvements in Tatum's ability to sit for longer periods of time. Her balance is improving every day and she is more and more able to correct herself out of a wobble. She was so proud of herself the first night she sat up on her own and she continues to see how proud we are of her with each attempt to do it again.

Tatum's fine motor skills have improved yet again over the past month. She is starting to put her 'pointer' finger and thumb together to explore her toys and attempt to turn pages of her books (which she loves!). She is interested in all sorts of toys these days which is totally new and very exciting for all of us. She loves rubbing stuffed animals, picking up and dumping plates of toy foods, shaking and banging toys that rattle and squeak.

When we read to Tatum, she listens so intently and slaps her hands on the pages with joy. One of Tatum's favorite things to do is to rub her own tummy. Josette, one of our wonderful patterning volunteers, noticed this and made Tatum a T-shirt with a furry heart shaped patch right on her tummy.

I can't help but cry with happiness over all of the love and support our sweet Tatum gets every day.

On the incline plane, we are seeing Tatum's upper body strength improve. She is using her arms, shoulders and hands more and more to move herself down and off her ramp. Tatum is beginning to demonstrate the success of our patterning program as well! We have seen her move herself down the ramp in a complete cross pattern movement a couple of times... so amazingly awesome!

Tatum is also beginning to lower her toes to the incline plane surface and is occasionally using her toes to push her way down. These are all greats signs of ongoing progress and improvement. When we put Tatum in standing position she is now interested in and able to bear weight on her feet and legs and sustain it with very little support from us.

Our program hasn't changed much in the last couple of months, mostly it has just increased in intensity. We have added a 'balance' component to the program that requires us to spin and twirl Tatum around in 20 different exercises that we are supposed to do for 20 minutes daily. I say 'supposed to do' daily because I haven't been able to do more than 5 minutes of the 20 required minutes... the spinning makes me so sick, I can't stand to do the work!!! Tatum loves it but I swear it's going to kill me! :)

Our reading program is still going strong. Tatum has been taught over 1200 words and she loves that we have introduced 3 and 4 word phrases to our daily reading program. She is now ready for 'books'. Her first books will be home-made, large print, simple books. I hope to be able to show Tatum 3 new home-made books each week starting January. The objective is to present her with 15 new home-made books each month. I do not think I'll be able to create the books on my own with the time that I have available right now. If anyone is interested in helping me put together a book or two a week, I'd love to share your handiwork with Tatum.

Tatum's appetite and health have been flourishing over the past month and a half. She is loving her food, growing like crazy and is super healthy. She has made it through several family colds/coughs, flus and gastro-intestinal infections without much more than a runny nose. Her immune system is so strong. Tatum's hair is growing so much that it needs to be trimmed every month or so to even it out. Some parts of her hair are growing much slower but it is finally growing everywhere.  Tatum has also popped 4 new teeth since the end of October. More good signs of progress!

We began fundraising this past month through the generosity of my friends Sylvia and Victoria. By hosting an Arbonne party for my friends, we were able to raise approximately $500. Sylvia Walker is an Arbonne sales manager and agreed to donate all of her commission from the party to go towards our next trip to Philladelphia in April.

We are just starting to think of a couple of other fundraising initiatives between Janaury and April. We hope to host a fundraising event at the end of March that will potentially include a silent auction, band, drinks and fun! If you are interested in being part of the planning committee, please let me know. The final idea is a fundraising site that will allow those who just want to give money, to give money! With any luck, we'll be able to get enough money together to continue with the Institutes program through 2013.

Thanks again to our amazing team of volunteers. We would be lost, lonely and unable to make the progress we are making without you and your help. Merry Christmas, Happy New Year and Happy Holidays!!!

Included are a few pictures of Tatum in action.

The little things just keep coming together!!! 

 Tatum is so aware of her world and what she is working towards. She pushes her way through her daily program and is so obviously proud of herself. Today our wonderful support worker, Michy wrote in Tatum's daily journal "I love, love, love the way Tatum responds to praise. It makes my heart sing. She so understands EVERYTHING!" It's true, she understands everything and it is so great to see it. When you ask Tatum for a kiss, she smacks her lips and LOVES kissing! When you ask her to put her hands in yours, she does! We've started using a choice board to allow Tatum to express herself and it is so amazing. We ask her everything from "are you hungry?", "are you ready for bed?", "did you enjoy that?" to "do you want to take a break?" and most of the time her answer is very clear. It's such a gift to be able to communicate and understand Tatum's needs and wants. 

We've noticed huge improvements in Tatum's fine motor skills in the past couple of weeks. She is picking up toys and moving them from hand to hand. She picks up her Dolly and shakes it with joy. One of the BEST things that she is now doing is that she holds on when we are carrying her. It feels so good to know that she doesn't want to be put down, that she wants to be close to me. She is grabbing our faces, pulling our hair, rubbing our chests, grabbing our shirts, necklaces and glasses. It is so amazing to see Tatum use her hands and arms.

Today was a great day. We completed all 40 maskings that we are supposed to do each day - for the first time ever! The program that we have been prescribed is near impossible to complete each day. I've been able to introduce all of the components of the program except the balance program. We'll start that next week. 

It's become very obvious that Tates and I need to start working first thing in the morning and have to keep at it until bedtime. We'll get breaks throughout the day and we can integrate much of her program into our lives with the rest of the family but there is no such thing as closing shop early for the next while. Tatum is moving herself around about 5-10 feet each night in her room. We've taken her crib down and she is sleeping on a foam pad on her floor. It's comfy and cozy and is big enough for all of us to snuggle in with her! Sleeping on the floor gives Tatum the opportunity to move as much as she can all day AND all night. 

 We are patterning twice each day and Tatum is on her incline plane whenever she isn't doing the rest of her program, being snuggled or fed. We are all noticing improvement in her strength, endurance and coordination. 

Today's pictures include one of Riley, Peyton and Tatum playing on the IPad in bed this morning, one of Tatum in her highchair last week and a video of us patterning Tatum last week. Our rhythm is a bit off because Tatum is starting to move her own arms, legs and head... not always the way we want her to! Quality isn't great... I took them on my finger print covered IPod! 

 Click the link to see us patterning Tatum. http://youtu.be/XcNnFRHDdB0

Back from Philly with big hope and huge goals! 

 We returned from The Institutes in Philadelphia two weeks ago and my head is spinning! I thought our program was intense beforehand. Yikes.

On day 1 of our visit to Philly, the team at the Institutes examined Tatum and reviewed her medical history. I summarized her progress in my last blog entry. Day 2 of our visit was all about where we go from here. We met with mobility specialists, cognitive therapy specialists, oxygen therapy specialists, a nutritionist and were presented with our new program.

Our initial appointment on day 2 was with Rosalind Doman. She said the following to us: "Families have come to us for decades, looking for hope that we can help their children get well. Some of these families do not have brain injured children and we cannot help them." She then said quite emphatically "Congratulations! Tatum has a brain injury. You can stop worrying now, we can help".  The myriad of emotions that quickly ran through my mind was crazy. In the end, I settled on elated relief. I don't know what we would do if we hadn't found this program.

For the first month we need to focus on two main things:

1. perfect nutrition with special attention being paid to lowering Tatum's Cholesteral, Triglycerides and Liver Enzymes, all of which are elevated and 
2. Tatum's rebreathing program... we need complete 40 maskings each day. 

Tatum's diet requires that we give her a specific amount of fat, proteins, carbs and calories each day. Her plate also has to include a specific combination of meats/legumes, leafy greens, green veggies, other veggies, healthy fats and carbs. Feeding her correctly is a full time job in itself. The benefits of feeding Tatum as the Institutes has prescribed are already so obvious. She is more energetic, more alert, gaining weight and growing well and she loves her food. She is opening her mouth like a bird to eat her incredibly healthy meals. Prior to perfecting Tatum's diet, she moaned through most of her meals and was frequently constipated and struggled to make a bowel movement. She is now pooping several times a day with ease... she's a happy girl!!

The rebreathing or masking therapy is intense. She doesn't love it so it makes it emotionally tough on me to do all day long. Because it is so good for her healing brain, Tatum and I just have to suck it up and go with it! Masking is the answer to so much of the brain development that we need to achieve. We asked our Advocate at the Institutes a number of questions about how to progress Tatum's development in specific areas. His answer every time was "Do the masking 40 times each day".

As we move into month 2 of our program, we will add our reading program back into the mix in it's new intensity, introduce an opportunity for Tatum to express choices each day, have Tatum on her inclined floor all day long as much as possible, introduce a fun new balance program that will develop her vestibular system, reintroduce a tactile and auditory stimulation program and gradually increase the number of patterning sessions she does from 10 minutes each day to 30 minutes each day.

This new program will take us 5-6 hours each day. Tatum's intense therapy program will help us continue to accelerate Tatum's neurological development in an effort to catch her up with her chronological age. It is our hope that if we achieve the goals set out for us that Tatum will be moving herself independently on a flat surface by April 2013 and that we will no longer need the incline floor exercises!

Thank you again to all of our volunteers. We could not do this without your help and the loving support of our family and friends. I will be posting some videos and photos soon... just have to sort through our collection and figure out how to post videos to this blog!