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!

What is Tatum's therapy program all about?

I thought I should back track a bit to explain what our 'Institutes' program is, why we have chosen to take this route of therapy vs others and what is involved in our current daily (yes 7 days a week!) program.

Let's begin with the 'Institutes'. The name of the organization responsible for Tatum's program is 'The Institutes for Achievement of Human Potential'. The Institues believe that developmentally delayed kids, such as Tatum, are brain-injured kids. The problem causing the delay is in the brain, and it is the brain that needs to be treated.

Historically, brain injured kids were institutionalized and/or thought to be hopeless and unintelligent. For more than half a century families have come to the Institutes from all over the world to learn how to treat their brain injured children at home. These families have proven that brain injured kids are intelligent and with stimulation and opportunity to gain real ability they can be helped. Our brain injured kids have incredible potential.

The Institutes exists to insure that all brain-injured children have a fighting chance to be well. The IAHP believes in non-surgical and non-pharmacological treatment of brain injury. We have chosen the Institutes program because it feels like the right answer and the only answer for our family. Our hospital visits have left us feeling as though there is nothing that can be done for Tatum, except wait and see. We are not prepared to 'wait and see'.

Now let's move onto Tatum's current program. The program is done everyday as long as she is well and I am up for it. The program is intended to be done joyously. Each activity is done repeatedly throughout the day in very short sessions. The duration is kept short to ensure that the child does not bore of the activity and enjoys the program. As we know, if you don't enjoy what you are learning it makes it far more difficult to retain the information.

For the last 2 months, Tatum has followed a daily routine of the following activities:

• 20-25 trips down our 8 foot incline plane - 2 minutes per trip 
• 10 patterning sessions per day 
• 10 rebreathing treatments per
• 10 sessions of holding a dowel for 1 minute *
• every meal is perfectly balanced and excludes dairy, gluten, high glycemic index food, artificial colours, flavours and preservatives. 

We begin our program every morning at 8am and do our best to wrap it up just before Tatum's afternoon nap. After nap time, we spend time together as a family both indoors and out. Much like her big sisters who go to school every day, Tatum spends a big part of her day learning as well.

We are in Philadelphia right now and will be visiting the Institutes for our first time with Tatum tomorrow and Tuesday. We will spend all day Monday having Tatum assessed by the Institutes' team of experts. Tuesday will be spent teaching us Tatum's new program! The IAHP program has already made a world of difference in Tatum's development. It has also given our family tremendous hope... real hope for an amazing future. For more information about the Institutes, check out their web site at www.iahp.org. Be sure to check out the media link to see how the reading program works and also read a great article about my dear friend Gillian's son Dylan who followed the Institutes program for several years.

Our Visit to the Institutes Today was a long day but very informative. We arrived at 9am this morning with Tatum and met with several members of their team. We reviewed Tatum's medical history and my medical history during my pregnancy with Tatum. We also formalized Tatum's functional diagnosis and discussed how Tatum's brain injury is thought to have happened. Finally we reviewed Tatum's progress since starting the intensive program on July 2nd 2012. Tatum's progress is remarkable!!! In 2.8 months of programming, Tatum has grown 2.9 months. This is a growth rate of 106%. Tatum's growth rate is currently 215% faster than her growth rate before starting the program. When we first visited the Institutes in June, Tatum's chronological age was 13 months. We determined that her neurological age was 6.41 months at that point. Today, Tatum is 16 months old and her neurological age is 9.39 months. Our goal is to continue working with Tatum and the Institutes program until her chronological age and neurological meet up! This little girl is capable of everything and anything. Way to go Tatum!!!

Thank goodness there is always something new in Tatum's world!

So far this week she:

• found her toes! 
• sat all by herself for 15 seconds! 
• is rolling over every day, all day and night!
• moved herself forward at least 12 inches, turned herself 45 degrees and moved another 12 inches while lying on her tummy during dinner prep last night! 
• moved from the bottom to the top of her crib at least 5 times last night... Mommy's a bit tired but can't dare complain! 
• is holding onto me when I carry her! She is looking and seeing everyone and everything. 
• she is so connected to the world around her and so wants to be a part of it. 

 Hooray for Tatum's victories!! Today has been a great day so far. It's almost lunch time and we've already had our 2 sets of patterners in at 8am and 10am, taken about 10 trips down the incline plane and worked our way through the reading and breathing program. Now it's time to go do some normal Mommy and baby stuff... coffee break! :)

Tatum Reese is our beautiful baby girl. She was born 15 months ago with a brain injury. She is a happy and interactive little girl who babbles, coos and giggles all day long and loves being around people.

Tatum’s brain injury has seriously delayed her development. She cannot yet sit or crawl but she is on an incredible pathway to wellness and is getting stronger and wiser every day.

Tatum has been involved in an intensive therapy program for the past three months. This program will help us make Tatum’s hurt brain well and give her the potential to crawl, walk, talk, feed herself and play... just like her sisters.

Tatum is a bright little girl with a determined will and a joy for life. Our therapy program comes to us from the Institutes for Achievement of Human Potential in Philadelphia. It is the only program that feels right for us and fills us with hope that everything will be ok for Tatum. 


Since starting the program intensively, we have seen Tatum's health dramatically improve, her energy and stamina have increased significantly, her hair and teeth have finally started to grow. Tatum is now interested in and is playing with her toys, she is holding her own bottle and putting it back in her mouth when it falls away. She is able to get her knees under her and her butt up in the air and push her self forward! She's moving!! She is able to roll over from her front to her back with ease and on occasion rolls from her back onto her front. She is now ticklish and so much more vocal. All of this progress and so much more has happened for Tatum because of our program, her hard work and the amazing help of our team of patterning volunteers... and it has only been 3 months! I can hardly wait for the next 3.