Monday, September 5, 2016

Jonah's Journey


Jonah at hippotherapy

One of the things I like most about being the regular blogger for Jacob’s Fund is that I get to tell you about the sweet, funny, courageous kids whose hippotherapy and therapeutic riding costs Jacob’s Fund scholarships.

One of the things I find hardest is condensing their stories into some paragraphs that convey their glorious selves so that you can get to know them.

 I know you want to know what their conditions and diagnoses are and how you’re helping them through your support of Jacob’s Fund.  But there’s so much more to these children.

Take Jonah, for instance. 

Cassie at McKenna Farms had warned me before my visit with Jonah and his mom:  “He’s a cutie!”  And, oh my gosh! Is he ever!

Jonah was born with multiple heart defects, like Jacob.  At least one of those defects is the same as one of Jacob’s, hypoplastic left heart syndrome, a relatively rare birth defect in which the left ventricle of the baby’s heart does not form correctly before birth and affects blood flow through the heart.

Also like Jacob, Jonah has blond hair and blue eyes (though as you can see, Jonah also has an abundance of blond curls).

 Jonah's one-man band

Amy, Jonah’s mom, shared some of the challenges, fears, joys, and triumphs with me during our visit with her and Jonah at McKenna Farms.

Besides multiple heart defects, Jonah was born with a cleft palate.  He also has a chyle leak, (lymph, called chyle, forms in his digestive system and accumulates in his pleural cavity). Jonah has had difficulty swallowing food, which makes it difficult for him to get proper nutrition, but recently he's started eating more solid foods. He also has some hearing loss in one ear.

You’d think all this would slow a little guy down. You’d be wrong. Jonah wants to do everything, especially anything that his big sister, Lily, does.

He loves preschool, even though it wears him out. This year the littles don’t take naps, so he usually falls asleep on the way home. 

At four, he’s determinedly independent.  He has a hearing aid, but regards it as an extraneous bother. His preschool teacher recently told Amy, “I just want to tell you how smart Jonah is.”  And when I touched base with Amy just before beginning to write Jonah’s story, she told me he completed a forward roll at gymnastics yesterday, then stood up proudly.  (An aside – taking Jacob to Little Gym was always so much fun; my heart swelled with every task he completed and the joy he experienced.)

 Jonah at church 

American Sign Language has been a big help.  Rachel, his therapist at McKenna Farms, taught him the sign for horse, and for her name.  He loves coming to McKenna Farms and several times a week he signs “Rachel horse.”   His gymnastics coach uses sign language as well; as a result Jonah is able to learn even more. While fewer and fewer medical professionals at all levels use American Sign Language, it’s been of enormous value for Jonah and Amy to have found those who do (Jacob, too, used sign language before he was verbal, and taught me a few words.)  Being unable to communicate is very frustrating for children, and although all parents want to hear their child’s voice, sign language alleviates much of the frustration for children and adults alike. 

While Jonah’s still non-verbal for the most part, he can say “Mama” and his own version of Lily, his sister’s name.

I can’t talk about Jonah without bringing up dancing, any more than I can think about Jacob without remembering his great dancing.   When I saw this video that Rachel made recently, I knew I had to share it with you.  It happened in the middle of an occupational therapy session. Jonah was learning to dress and undress himself (he so wants to do things himself!) I think it captures some essential Jonah:

  Jonah rocks!

Jonah has needed therapy for most of his four years. Like many children - especially small children - clinical settings, which are so much like the medical offices and hospitals they’ve spent so much time in, Jonah found the sterile environment and white walls intimidating. But at McKenna Farms the environment is like a home, with the farmhouse and horses and trees, and sometimes an occasional cat roaming the barn and surrounding grounds. Therapy at McKenna is like playing.


 Jonah enjoying a cheeseburger and apple juice

While Jonah is making progress, and joyous accomplishments pop up all around - like eating cheeseburgers and drinking through a straw - there are challenges ahead, some very big ones.  Jonah was scheduled for another heart surgery this summer, but he’s been doing so well that’s been postponed to next summer, so he’s scheduled for a heart catheterization at Thanksgiving.  Amy and Linn are seeing signs of the need for surgery, too: Jonah's fingers are blue more and more often, and his stats have started coming down. 

Jacob’s Fund is proud to support Jonah’s hippotherapy.  That we are able to do so is because of you.  Thank you.


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