He Continues to Amaze Us!

I remember a time when I said I would write an update on Jacob every week.  I remember committing to our wonderful friends that I would be sure to write updates frequently after our move.  Boy have I dropped the ball.  I am so sorry!

The great news is that Jacob just continues to be absolutely amazing.  We thank God every day for giving us such an incredible gift and Jacob shows us, every day, his incredible strength, determination and pure joy!


So, what’s new?

Jacob handled the move beautifully.  I think his favorite part of our new home is being able to play with his friends and cousins!  He just lights up when they are around and they are so wonderful to him.   We are also enjoying having so many loved ones around.

Jacob is also doing very well with is program from IAHP.  He has progressed in so many areas since his last visit to Philadelphia last March.  At our last revisit, Jacob was crawling about 2 feet on his track within 2 minutes.  He is now crawling  6 feet on the track and 1 foot on the flat floor within 2 minutes.  Go Buddy!


He is also really loving his intellectual program.  Previously, Jacob could communicate with us using choice boards.  We would write 3 choices on a board and he could touch the one he wanted.  This was great, but limited.  We have now advanced to a letter board.  This allows our smart little boy to tell us anything he wants!  We ask Jacob a question and he points to letters to give his answer…yes, really!  Yes, he is 3!!!!


Here are some examples…

Why didn’t you want to sleep last night?   P-L-A-Y

What do you want to do first?  S-T-R-E-T-C-H

Why aren’t you eating your dinner?  H-E-A-D H-U-R-T

Is there anything I can do to make it better? M-E-D-I-C-I-N-E

It has been just amazing to open this line of communication with our little guy and it has been SO helpful!

In other news, for the last 6 months, Jacob has been sleeping with a CPAP machine to help with his severe obstructive sleep apnea.  We have a love-hate relationship with that machine.  It is clear that it is completely necessary because his oxygen levels drop when he pushes it off his nose.  Luckily we have him on a monitor that alarms when this happens.  However, this has resulted in significantly interrupted sleep.

We recently saw an Ear, Nose and Throat specialist that looked at Jacob’s nose and throat to identify the cause of his obstruction.  He found that Jacob’s adenoids and nasal turbinate tissues have significantly reduced Jacobs airway.  Try pinching your nostrils closed, just slightly, and imagine what it must be like for Jacob to breathe all the time.

The good news is that something can be done to help him.  The bad news is that it is another surgery.  It is a very routine procedure with a minimal recovery, but it is still scary.  Please, please keep our little man in your prayers on Monday (10/5) and I really will post an update when he is all better!!

As always, thank you all for your amazing love and support and I will do my best to get better with the updates!


5 thoughts on “He Continues to Amaze Us!”

  1. Hello, I’ve only just discovered your blog, so perhaps I just haven’t spotted this information yet… Would you be so kind as to share with us where you got some of the things that are helping your truly inspirational boy?

    I’m interested in everything, the respiratory patterning device, the breathing mask, the crawling inclined boards and how you taught him to use the boards to show you what he wants.

    Thank you for writing this blog. Other parents truly need the inspiration your success gives us!!


    1. I would be happy to share! All of our equiptment, and pretty much everything we do, is thanks to the incredible specialists at The Institutes for the Achievement of Human Potential (www.iahp.org)! I couldn’t recommend them more highly!!


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