What an incredible day!!

It is an understatement to say that we have had an incredible day.  The blessings just kept coming today and we are so overwhelmed!  Here is a quick snapshot in the best chronilogical order I can remember!

1.  An amazing care package!  My wonderful cousin Michael worked his magic to deliver an amazing, and much needed, care package that really lifted our spirits!!  THANK YOU, MICHAEL!!!!

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2. Bryan ordered Jimmy Johns for lunch!!  I know that may not seem like much but a break from a week long sretch of hospital food combined with a hometown favorite…JACKPOT!!!

Our amazing post PICU digs!
Our amazing post PICU digs!
One happy little boy after his first post-flu applesauce!
One happy little boy after his first post-flu applesauce!
Did we mention that it snowed while we were here?!?
Did we mention that it snowed while we were here?!?
The view into the CHOP atrium.  This place is incredible!
The view into the CHOP atrium. This place is incredible!

3. We received our confirmation numbers for our flights home!!  We have been incredibly blessed by the support we have received from our new friends at JetBlue.  When we knew that our originally scheduled flights home would not work, we emailed JetBlue and they said they would help us get home.  Today we got our confirmation and we continue to be amazed by their incredible support!  We LOVE JetBlue!!

4. Logan’s Gift is official!!  This is an incredible surprise several months in the making.  We are all too familiar with the challenges faced by families with brain injured children and we want to help.  Today, we recieved notice from the IRS that our 501C3 application has been processed and we can begin our work to help other families and raise awareness of the amazing work of IAHP so more families can benefit!!  So much more to come on this!!!

Jacob just horsing around with daddy
Jacob just horsing around with daddy

5. We are cleared for discharge!!!!  We have been waiting for approval and delivery of a CPAP machine for Jacob to wear while sleeping.  This was the last piece of the puzzle for our discharge and today it arrived.  Sorry, new friends, we’re outta here!!!!!

As always, thank you all for your amazing love and support!  We will be seeing our incredible team at IAHP this week and then we will head home!  Boy are we ready!  Its been fun, Philadelphia, but its time to go back to California!!

An Unexpected Detour

We have always known that Jacob likes to keep us on our toes and he likes things his way.  We didn’t quite realize that he also enjoyed touring different Children’s Hospitals across the country.  For a family that doesn’t really go places, or do things, Jacob sure makes the most of his limited opportunities.

As you may know, Jacob was born at Children’s Hospital of Illinois at only 23 weeks gestation.  After 2 months, once he was stable, we were flown back home to California where, after a month at a hospital in Sacramento, he was transferred to Children’s Hospital in Oakland.  What we didn’t expect, while on our trip to Philadelphia to see the specialists at IAHP, was a visit to Children’s Hospital of Philadelphia.

Jacob has been battling colds since Thanksgiving.  For the last 2 weeks, he has had a nasty cough that really only bothered him overnight.  Unfortunatly, yesterday his condition worsened, as did his cough, and he developed a fever.  So, for the first time in over 2 years post NICU, we had to take him to the ER.  Luckily, we were only about 20 minutes from one of the top Children’s Hospitals in the country.

imageJacob was assessed, treated and admitted into the Pediatric Intensive Care Unit.  He is still on significant supplemental oxygen, but he is much more comfortable than last night.  So far, we have been able to rule out pertussis (yay!) but we do not yet recieved the results of the viral panel.  We also do not yet know how long we will be here.  It is a “wait and see” type situation.

In the meantime, please keep our little guy in your prayers.  I will try to keep updates coming, but mostly we will be snuggling our sweet little patient.

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Whoops!  I almost forgot!  Happy St Patty’s day (see Jacob’s green blanket!) and Happy Birthday Jaime!!  Auntie Pie, Uncle Bryan and Jacob love you!

****JACOB UPDATE****  Jacob has tested positive for Influenza type A.  I am so grateful that we did give him his flu shot or this could be much worse.  A reminder to all that getting your flu shot can reduce exposure to fragile little ones like Jacob.  I am also comforted to know that all of Jacob’s volunteers have had their flu shots so we dont have to worry that we exposed them to influenza either. Jacob will be given an anti-viral that is shown to reduce the duration and severity of influenza.  I hope to have more updates soon,

Congratulations little man!

Congratulations Jacob!  You are officially a lady’s man!!  You don’t even need Couvoisier or a fish sandwich (fans of SNL will get that little joke)

Last weekend was an absolute blast for mommy and Jacob.  My wonderful friends came to visit and brought their beautiful little girls.  Jacob was the man of the house as Bryan was off to Phoenix to visit his mom.  We had an amazing weekend of babies and girlfriends with the only dresscode being yoga pants!

Jacob has friends for life with these beauties!  032We loved watching them interact!

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On a side note, since I completely forgot to post a reminder, the Norwex fundraiser will remain open for another week.  If you are interested in helping us raise money for Jacob’s upcoming visit to IAHP by trying out these great products, you can place on order HERE until next Sunday, March 8.  If you missed the last post, click here and you can find the catalog and links to past posts with our favorite products!

If you would prefer to make a straight donation, CLICK HERE to access our GoFundMe site.  Every bit helps and you can make a donation in any amount you like.  We have $4500 to go!

Thank you all for continuous love and support!  More great updates to come!!

Its Fundraiser Time

It is hard to believe that in just over a month it will be time to return to The Institutes for the Achievement of Human Potential for Jacob’s bi-annual re-evaluation and program update.  These visits are absolutely critical for Jacob’s progress and are amazingly educational and energizing for Bryan and me.  The benefits and progress are absolutely priceless, however, the trip is not.

This is also priceless…

We have been so blessed to have such incredible support from our family and friends, old and new.  Because of you, our new friends at the Clements-Lockeford and Stockton Host Lions Clubs and JetBlue, we only have $5000 to go for the upcoming revisit!  If each of our friends to the I Am On Team Jacob facebook page donated just $35, we would reach our goal!  If you would like to help us, we have come up with 2 options.

Simple Donation

The folks at GoFundMe have made it so simple!  If you are interested, just click here and you can make a donation in any amount you like!  Every bit helps and goes straight to Jacob’s tuition at IAHP!

Back by popular demand…Norwex!

Our last fundraiser was such a success and we are so glad to have introduced so many to these excellent products that have made such a difference in our home.  All proceeds from orders placed through this link will support Jacob’s upcoming IAHP revisit!

This link will be active for 2 weeks – (closing 2/22 @ 8pm)

Click here to place an order

Other helpful links to learn about Norwex

Why we love Norwex

My favorite products

Norwex Catalog – 2015_Product_Catalog_US_Web

As always, thank you all for your incredible love and support!

 

 

Blessings from around the world!

Let me tell you about this guy….

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This is Jason.  We met this crazy character in Australia nearly 5 years ago.  Understandably, we were immediately taken by this fellow.  Now, often when you meet people on vacation, you never expect to see them again…especially when you meet on the other side of the world.  Well, thanks to the wonders of social media, we were able to keep in touch.  A couple years later, Jason was traveling through the US and we got to see him again.

As the years went by, we stayed connected.  We sent congratulations for his marriage and two children and he followed along with everything we went through.  He even sent Jacob balloons and a teddy bear to help him recover from his final surgery!  What a guy, huh!

Well, the story doesn’t end there.  Last week, I got an email from JetBlue.  I was so shocked!   As it turns out, our amazing friend tracked down the email addresses for the leaders of JetBlue and sent them an email with our story!  It was so beautiful (don’t worry, I’ve included it below) and I was blown away at his efforts and words.  But then, JetBlue responded!!!  WHAT?!?!JetBlue

But wait, there’s more!!  JETBLUE HAS TAKEN CARE OF OUR ENTIRE FLIGHT TO PHILLY!!!!!!!  I can hardly believe it!! We have loved our experience flying with them, especially with the additional challenges flying with Jacob…car seat, portable oxygen etc.  But, this is just out of this world incredible!!  So, if you’re reading this, David, Robin or Kelly, THANK YOU THANK YOU THANK YOU!!

And, Jason, there are no words to express how touched we are and how grateful we are to have you in our lives.  We will get back to Australia eventually!  You are AMAZING!  Thank you for being such a great friend and such an incredible supporter of our sweet Jacob!!  We love you!!

Without further ado…

Dear David/Robin,

My name is Jason Duval, I am writing to you from Perth Western Australia on a very important matter. I understand at the moment that Jet Blue is in a transition period of CEO- hence writing to you both. Firstly, congratulations on the new position Robin and a big well done on your time in the role David.

I am writing to you today on behalf of an amazing family in Lockford CA. I meet Jennifer and Bryan Dein in 2010 in Adelaide, Australia, whilst they were on their honeymoon. We were on a tourist trip on Kangaroo Island and spent a couple of nights together. I have never met a more amazing couple then these two. They were madly in love, highly loveable people. I spent 10 months travelling America in 2010 and they made their home a place for me to stay at any point in time. I took them up on this offer and since then have stayed in touch with them as they have become great mates even if we are a world apart.

In 2012, Jennifer found out that she was pregnant, with twins. I could not have been more ecstatic for such an amazing couple. This is where the joy ends and the pain began for Jennifer and Bryan. Jennifer’s pregnancy was complicated. Jacob was born at 23 weeks and 6 days; this is over 4 months premature on the 8th June 2012. Jacob survives his twin brother, who was born 2 days prior and lived for a week. Being so premature, Jacob has had a life that has involved more hospitals, specialists, tests and tears then I would care to imagine. Throughout this time, Jennifer and Bryan have remained steadfast in sourcing specialists all around the country to help their little boy have a fighting chance of survival.

As with anything in today’s day and age, it comes at a financial price. I personally am amazed at Jennifer and Bryan’s ability to stay on top of everything financially whilst trekking across country for specialist appointments. During a recent conversation with Jennifer and Bryan, I found out that they need to fly from Sacramento to JFK, to drive to Philadelphia where Jacob attends the Institute for the Achievement of Human Potential. These specialist appointments help Jacob achieve a life of sound, vision and mobility- things that we take for granted everyday- which Jacob has to fight for every day. To overcome the huge brain bleed damage that was cause by his premature birth- these appointments are necessary for Jacob, however are not covered by insurance. The next appointment for Jacob is in March 2015.

Jennifer and Bryan are unaware that I am making this request for them, however I have seen the progress that Jacob is making through the family’s daily blog, videos of little Jacob being able to crawl while assisted and his general wellbeing is on the improve. I have noticed however that the financial strain is getting to the family and it makes me sad that I cannot help from this side of the world.

During this discussion with Jennifer and Bryan, I also found out that they are Jet Blue customers and have been for a long time. I myself have flown Jet Blue previously on my travels throughout America. So my idea was to ask the men at the top to do this quiet, unassuming family in Lockford a huge favour. Please sirs, can Jet Blue please pick up the tab for  flights to and from Sacramento to JFK for Jacob, his Mum and Dad and carer, so that he can continue his progress and the family can continue giving Jacob the treatment that he needs to survive.

I personally do not know how many years this treatment may be required, however I am sure that if the family could have this year and next year’s flights covered they would be very much appreciative.

I am not sure how to finish this letter, as I currently have tears in my eyes at the thought of this plan actually coming to fruition and for a soldier tears do not come easily.

David and Robin, I would like to thank you for reading my letter, taking the time to comprehend the situation and hopefully for being able to implement a plan that will assist my friends and their amazing son. I hope to hear from you soon

Yours Sincerely

Jason Duval

A long overdue update!

I don’t know how that last 2 months flew by so quickly.  I certainly fell off the ” update the blog” wagon, and for that I apologize.  I promise what is to come will more than make up for it!!

Since I last wrote, we visited family in Phoenix and Jacob had a great time with all 4 grandparents, aunts, uncles, cousins and friends.  The trip was a great success, although way too short.

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We then got to work preparing for Christmas at our house with my whole family.  Even though Jacob was sick, we had a great time.

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Once the dust settled and Jacob’s symptoms resolved, we saw some amazing improvement pushing through!  In just the last week, Jacob’s crawling on the Assisted Gravity track has skyrocketed!!  We are just overwhelmed with joy.  Now I couldn’t possibly report such amazing success without a video!!

Here you go! 

The Institutes’ Collaborators – Past and Present

photograph used with the permission of The Glenn Doman Family
Glenn Doman founded The Institutes For The Achievement of Human Potential in 1955. Glenn’s groundbreaking work with brain-injured children secures his position as the grandfather of ‘Neurodevelopmental Therapy’, a term created by practitioners who use an altered version of Glenn’s work. The Institutes medical and clinical staff around the world must be members of The International Academy of Child Brain Development to be qualified to use The Institutes and Glenn Doman’s methods.The extraordinary line up of Glenn Doman’s collaborators – both past and present (since Glenn’s passing in 2013), and the phenomenal results achieved by children on The Institutes program over the past 50 years, makes the authentic IAHP program the absolute ultimate in therapy for children with neurological conditions, or brain injuries.

One only has to read an edition of The Institutes Magazine – the ‘In Report’ – to see just how impressive the results really are. Blind children achieving sight, deaf children beginning to hear, immobile children moving their bodies for the first time – all because of the work of their own parents, guided by Glenn Doman’s team.

THE INSTITUTES COLLABORATORS INCLUDE THE FOLLOWING:

This Golden Wall in the Auditorium at The Institutes campus in Philadelphia displays the signatures of many collaborators.

The Institute for Functional Medicine
www.functionalmedicine.org
A very notable supporter of the work of The Institutes is Dr. Jeffrey Bland PhD, FACN, FACB, Founder of The Institute for Functional Medicine.
Dr Bland authored an article in ALTERNATIVE THERAPIES, nov/dec 2008, VOL. 14, NO. 6 21. The Article – AUTISM: ASKING THE RIGHT QUESTIONS TO FIND THE RIGHT ANSWERS – includes the following:

“Upon reflection, I recognize that the program at the Institutes for the Achievement of Human Potential is the quintessential functional neurology program. It shares all the concepts that underlie the principles of the Institute for Functional Medicine. Within its formalization and therapies may lie the solution to autism.”

Read the full article here: Autism- Asking the Right Questions to Find the Right Answers

Dr. Raymundo Veras
Dr Raymundo Veras was a notable supporter and published the book Children of Dreams, Children of Hope.
This is the story of Dr. Raymundo Veras, a brilliant Brazilian surgeon and his journey into the world of brain-Injured children. After Dr. Veras’s son, Zé Carlos was injured in a diving accident, Dr. Veras dedicated his life to fixing his son’s injury. That devotion led him to The Institutes for the Achievement of Human Potential in Philadelphia, where he learned from Glenn Doman and the staff, how to help brain-injured children. From there he returned to Brazil and began treating many more children. His success with the children the world has called ‘Down syndrome’ led to the first successful methods to treat their problems. This book is the story of Dr. Veras’ second life and the first chance for wellness for many of the world’s children.

Raymond A. Dart, M.D.
Dr. Raymond A. Dart was an anatomist and anthropologist, best known for his 1924 discovery of a fossil of extinct hominids in South Africa. Naming the skull Australopithecus africanus, he established it as a new genus and species. He wrote of his discovery in Adventures with the Missing Link.

Professor Dart taught at the University of the Witwatersrand in South Africa from 1923 to 1958. In 1960, he wrote to Glenn Doman after reading The Institutes first report on the treatment of brain-injured children. Referring to the stages of neurological development mapped out by The Institutes, he wrote, “The development of the individual does indeed recapitulate the evolution of the species.”

Glenn met Raymond Dart in 1966, during The Institutes expedition to study the Bushmen of the Kalahari Desert and other African tribes. Raymond Dart and his wife, Marjorie, then came to The Institutes, where he became chairman of The Institute of Man, holding the Chair of Anthropology created through a grant from the United Steelworkers of America.

For over twenty years, the Darts made The Institutes their home. Professor Dart continued his scientific research on man’s development and his life-long role as both student and teacher, returning to South Africa each year for several months.

Temple Fay, M.D.
Dr. Temple Fay held the chair of neurosurgery and neurology at Temple University Medical School. Today hundreds of thousands of people are alive because of his invention of human refrigeration. Dr. Fay personally created the first two hypothermia machines. One is now at the Smithsonian Institute in Washington, D.C., and the other is in the British Museum in London.

Glenn Doman first met Dr. Fay in 1941. After the Second World War, they worked together intensively, and Glenn Doman became Temple Fay’s principal student. They opened a private practice together at Norwood, and in 1955 Glenn Doman founded the Rehabilitation Center at Philadelphia. Dr. Fay was the chief medical consultant of what later became The Institutes for the Achievement of Human Potential.

Many of The Institutes principles of brain growth and development are built upon Dr. Fay’s discoveries.

Edward B. LeWinn, M.D.
Dr. Edward LeWinn, a respected internist at Einstein Hospital, first learned of The Institutes work in 1957. He referred one of his patients who had suffered a stroke to the Rehabilitation Center at Philadelphia (the original name of The Institutes). Thinking that the Center was a nursing home, Dr. LeWinn was astonished when Glenn Doman helped this elderly patient walk again.

As the years went by, Dr. LeWinn became more and more involved with The Institutes. When he retired, he became a full-time member of The Institutes medical staff. With Glenn Doman, Dr. LeWinn helped to pioneer The Institutes detoxification program. He published many articles about The Institutes work and wrote a book entitled Human Neurological Organization. This was the first book written for the medical community that explained the scientific rationale behind The Institutes work.

Evan Welling Thomas, M.D.
Dr. Evan Thomas was an outstanding public health physician who was credited with helping to create the original protocol to eliminate syphilis in the United States.

He joined The Institutes as a full-time volunteer member of the medical staff in 1964. Dr. Thomas was the brother of Norman Thomas, who ran a number of times as a candidate for President of the United States. Dr. Thomas worked alongside Glenn Doman and Dr. Edward LeWinn. He authored Brain-Injured Children, the second book ever published for the medical community explaining The Institutes work.

Even in his eighties, Dr. Thomas always remained young in spirit. The Evan Thomas Institute for Early Development is named in his honor.

Roselise Wilkinson, M.D.
Dr. Roselise Wilkinson came to The Institutes in 1964 seeking help for her eldest son and never really left. She graduated from Temple University Medical School at a time when few women studied or practiced medicine. After joining The Institutes staff, she served as The Institutes medical director from 1964 to 1998. In addition, she was a member of the Xingu Expedition to Brasil Centrale in 1969.

Dr. Wilkinson was involved in important research projects at The Institutes, including respiratory treatment and Oxygen Enrichment. She developed the detoxification program and was the first to implement it. This is the same program used today at The Institutes.

Dr. Wilkinson especially enjoyed her involvement with the children and their families. She took great care to teach parents well, so that they clearly understood the goal and technique of each program they undertook with their child. She enjoyed a long career as medical director and served on The Institutes board of directors.

Golden Wall_Linus PaulingLinus Pauling and Ava Helen Pauling
Ava Helen Pauling was the wife of Dr. Linus Pauling. The Paulings were friends of The Institutes up to the time of their deaths. Linus Pauling is the only man in history who has won two Nobel Prizes entirely by himself, not shared with others. One prize was for his scientific work in chemistry. The other prize was for peace, for his battle to rid the earth of atomic weapons.

Mrs. Pauling was a human rights activist who was involved in different social movements, including women’s rights, racial equality, and world peace. She and her husband worked for nuclear disarmament, to check the proliferation of nuclear weapons, and to prevent the atmospheric testing of atomic bombs. Each year since her death in 1981, The Institutes has presented a peace lecture in her memory.

NASA
Dr. Ralph Pelligra, chief medical officer of NASA-Ames at Moffett Field, California, has been on The Institutes board of directors for many years and has served as chairman of the board. Dr. Pelligra and NASA have helped The Institutes staff to answer questions using their space-age technology in ways that technology has never been used before.

Dr. Ralph Pelligra’s centrifuge project in 1976 was followed by collaboration with The Institutes to establish normative respiratory data, a modified space helmet for underwater use, and a 1978 joint conclave in Palo Alto, California. By 1979, the united efforts of NASA and the Institutes had blossomed into a strong relationship that held great promise for the world’s brain-injured children and possibly all children.

In 1979, NASA’s immense engineering acumen, imagination, and technical skill focused upon two of the most stubborn problems faced by the Institutes’ hurt children: blindness and immobility. While stunning gains had already been made, the staff realized that these advances could be accelerated with the use of devices that gave the necessary stimulation with increased frequency, intensity, and duration.

Working closely with The Institutes staff, the NASA research team, headed by Herbert C. Vykukal, introduced a vehicle for initial crawling (VIC device) in February 1979. In action, the device resembled a hovercraft moving seemingly without friction over water. When a child made any crawling movement, the immediate positive feedback encourages repetition of the movement. The reduced friction allowed the child to achieve purposeful mobility.

Also in 1979, the Vision Project culminated in a device brought to the Institutes in March by Dr. Pelligra. It combined auditory stimulation synchronized with bright flashes of light, worn as a fully computerized apparatus containing a headset and goggles. The success of these projects consolidated the relationship between scientists and human developmentalists.

NASA and The Institutes planned future projects, and the relationship between scientists and human developmentalists was consolidated.

Adelle Davis
Adelle Davis, an author and nutritionist, shone a spotlight on the importance of good nutrition with her books, including Let’s Get Well and Let’s Have Healthy Children. With the assistance of Adele Davis, the staff of The Institutes organized a nutrition program specifically designed to help each child achieve optimum health. This program, which is carried out at home by the parents, has been effective in helping chronically ill children to become healthy and physiologically strong. The staff continues to modify the program based on current information, including awareness of food sensitivities and allergies.

Dr. Denise Malkowicz
Dr. Malkowicz is a neurologist specializes in the study of epilepsy. She researched and wrote the article “Rehabilitation of Cortical Visual Blindness,” which was published in the International Journal of Neuroscience. The technique of visual stimulation used to create vision has allowed blind children to progress to seeing and even reading. Dr. Malkowicz has also been involved in The Institutes work in biofeedback and neurofeedback.

Dr. Wayne Matson
Dr. Wayne Matson, a consultant in analytical chemistry, published the results of his study that showed many of the changes in body chemistry produced by The Institutes program of neurological organization. A particularly interesting finding from the pretreatment blood and urine samples was a high level of oxidative stress in the injured brain. This imbalance was often corrected by The Institutes program, which included masking.

Dr. Mihai Dimancescu
Dr. Mihai Dimancescu, a prominent neurosurgeon, updated the information in Dr. Edward LeWinn’s bookComa Arousal. With Glenn Doman and Drs. Wilkinson and Pelligra, he co-authored a paper on this subject [“The Effect of Intense Multisensory Stimulation on Coma Arousal and Recovery” (Neuropsychological Rehabilitation, 1993)]. Dr. Dimancescu has served on The Institutes board of directors and is currently the chairman of the board.

Dr. George Goodheart
In 1981 Dr. Jerold Morantz, an applied kinesiologist, became involved in The Institutes work with brain-injured children and began to teach The Institutes staff about AK. Shortly thereafter, Glenn Doman was invited to speak at the annual convention of AK practitioners. Dr. George Goodheart, the founder of applied kinesiology, spoke and taught effective techniques at the annual meeting of the World Organization for Human Potential at The Institutes. Dr. Walter Schmitt, a diplomate in neurology, became involved and an important member of the team whose focus is on the structure and function of the body.

 

by  on 18/02/2014

 

 

Giving Tuesday – YOU can make a difference!

Today marks the newest “made up” day in the social media, trending world.  Today is #GivingTuesday.  What a wonderful use of media to encourage the world to give back!!

There is no doubt that your Facebook Newsfeed is filled with ads and stories to encourage you to choose their charity for this day of awareness.  I’d like to suggest The Institutes for the Achievement Potential as a very worthy choice for your charitable giving.  The work they do helps families around the world help their children lead the best lives possible.  A life full of hope and possibilities. They provide answers and solutions.  If your heart has been moved by Jacob’s story and you are looking for a tax-deductible option for giving, please click here to donate to the IAHP Founders Fund.  If you would like to help Jacob directly, please click here.

We are so immensely grateful for our amazing supporters.  Thank you for your love an encouragement.  Please remember that every donation, no matter the size makes a difference and helps us get closer to our goal.  It helps us focus all our energy on helping our amazing fighter get well!!  Thank you!!

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.

Group

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.

patterners

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!

Jacob's Journey from 23 Weeker to Wellness