Its report time

As participants in the Intensive Treatment Program at IAHP, we are asked to submit reports halfway between our biannual visits to keep the staff up to date on Jacob’s progress.  Of course, any time we have questions we are encouraged to reach out, but these reports supply the regular contact that assures the program’s success. This rainy, blustery day coupled with the sweet sound of Jacob sleeping make the perfect environment for it.

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In these reports we supply information on Jacob’s nutrition, program achieved, changes in abilities and the ever important question “is your child worse in any way?”  We also supply videos of Jacob doing his program.  The entire team meets to review the information we send and make recommendations for any changes.

We will tell them that Jacob is LOVING his Intellectual program.  He sees 25 “Bits of Intelligence” every day and 25 words or couplets.  Of these, 5 rotate daily so he is always getting new information.  His bits consist of large clear pictures with the corresponding title and the subject can vary greatly.  He may be learning about ocean fish, great works of art, vegetables or US presidents.  Soon we will move from couplets to phrases and then books!

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Jacob is also doing well with his physical program.  This consists of his inclined track, gravity assisted environment, gravity free environment, patterning and flat floor crawling.  The inclined track is strategically designed crawling surface that is at a downward angle to decrease the burden of gravity.  Any movement Jacob makes will create motion to teach him what he needs to do to be successful.  Similarly, Jacob’s gravity assisted environment suspends Jacob in the crawling position and makes it even easier for Jacob’s movements to create motion.  Patterning is passive on Jacob’s part and we move his body in the pattern in which he will crawl to send the message to his brain “this is what it feels like to crawl.”  The gravity free environment is also passive on Jacob’s part.  It is like a bouncer on steroids.  Jacob can be suspended in many positions and move in all directions.  This will develop the vestibular areas of the brain that are responsible for coordination and integration.  Together, these activities will get our little guy moving.  He is SO close and he gets closer every day.  We have clear evidence that he has the ability to move his body in the correct way, we just need to connect all of the dots.  When he does, WATCH OUT!!

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Admittedly, we have had some challenges in the last 3 months.  Our little guy has been having a hard time sleeping and swallowing.  This has disrupted quite a bit of his program.  Some nights he does not tolerate his respiratory patterning device and some days he sleeps into the afternoon which takes away our valuable program time.  Thankfully, the team at IAHP has been right along side us working to find a solution.  We are taking steps in the right direction and hope to be back on track soon.

Our greatest success in the last 3 months is the improvement in his nutrition.  Jacob has always had a very nutritious diet, but in an effort to increase calories, we fell out of balance.  This resulted in even more challenges achieving his calorie goals.  006 (2)
However, since we discovered our error and corrected it, he has been eating like a champ…and he is gaining the thighs to prove it!!

 

Well, I hear our little bug stirring and he is certain to be hungry.  Its applesauce time!

A Tribute to our Volunteers

We have been so blessed in the last 2 years meeting such incredible, giving and dedicated people.  One of the particular groups I would like to thank today is our patterners.  These wonderful men and women come to our house, traveling usually over 30 minutes, to spend an hour with us providing a very important therapy for Jacob.

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Patterning is procedure that requires 3 people, one at Jacob’s head and one on each side.  Jacob’s head, arms and legs are moved in the pattern in which he will crawl and it sends the message to his brain, “this is what it feels like to crawl.”

Patterning is done 6 times a day, 7 days a week.  Rain or shine, holiday or not.

These men and women have given our family such an incredible gift in their love and support.  They tolerate Jacob’s occasionally irregular sleep schedule causing last minute cancellations and my weekly calls to request substitutes if someone is unable to come on their scheduled day.

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Thank you! Thank you! Thank you, dear friends!!

If you are local and would like to join our patterning team, we can always use more!  Its easy, its fun and it requires no more skill or training than moving your arms left to right.  Don’t worry, we can train you to be an expert patterner in no time!

I AM ON TEAM JACOB – click here learn about Team Jacob

I am on Team Jacob…are you!?

In recognition of Prematurity Awareness Month, we would like your help in sharing Jacob’s story!  Together we can spread the word about the real lives touched by prematurity and the amazing work of The Institutes for the Achievement of Human Potential to help both brain injured children and well children.

Here’s the plan…

Step 1 – Snap it! Take a good ole selfie of yourself with your Team Jacob sign (click the link to open and print or make your own!)

Step 2 – Post it!  Share it on your Facebook page AND the I Am On Team Jacob Facebook page. Share it on Instagram and Twitter too with #iamonteamjacob  Don’t forget to like the I Am On Team Jacob Facebook page…we want to see you!  You can even post it at your office!

Step 3 –  Share it!  Tag and Challenge 5 of your friends to show their support and spread the word, visit the website and Snap it! Post it! Share it!!  We loved the ALS challenge…let’s create the same awareness!

Now the big question is…who will be first??  Go Team Jacob!!

Are you new to Team Jacob?  Welcome!

Jacob’s story is nothing short of extraordinary.  He was born at only 23 weeks, 6 days gestation…that is 4 months early.  After losing his twin brother, Logan, he fought through 4 months in 3 Neonatal Intensive Care Units and endured 9 surgeries before he was 6 months old.

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In his first year, Jacob was diagnosed as functionally blind with a profound hearing loss.  He is recovering from hydrocephalus, a severe brain bleed and even battled incredibly persistent fungal balls on his kidneys.  He has also been diagnosed with Cerebral Palsy and Developmental Delay.

Jacob at his first IAHP visit
Jacob at his first IAHP visit

But, that is just the beginning of his story.  Once the dust settled, we set out to find answers.  Our prayers were answered when we found The Institutes for the Achievement of Human Potential.  They have been working with and helping brain injured  for over half a century and they have found the answers to make these kids defy their diagnoses!

Jacob was blind, he can now see!

Jacob was deaf, he can now hear!

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We still have a long way to go, but we have a SPECTACULAR team!  From the experts at IAHP, to our incredible volunteers and our amazing friends and family.  And now YOU!  Thank you for joining our team.  Thank you for showing your support.  Thank you for sharing our story!!

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There is so much more to say and so much more of his story to tell.  Please follow the blog and join the I Am On Team Jacob Facebook page.  There are so many exciting things in our future, both for Jacob and for hurt kids everywhere.

Welcome to Team Jacob!  Tell a friend!!

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