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About Jenna

Jenna is a spunky little six year-old who was born with a triple intestinal atresia, which, in plain English, means her small intestine wasn’t formed correctly and wasn’t fully connected. She had surgery when she was only two days old and ended up with only about half the normal length of small intestine and a diagnosis of Short Bowel Syndrome. She has a g-tube that we feed her through, although she can eat by mouth if she’s in the mood or hungry enough. She still doesn’t know how to recognize the feeling of hunger and struggles with knowing how to chew and swallow.  Most of her eating involves teensy, tiny nibbles  of only a select few foods of choice.

She spent three months in the NICU and developed chronic lung problems somewhere along the way.  She was diagnosed with Bronchopulmonary Dysplasia (aka Chronic Lung Disease), and is very susceptible to serious respiratory problems from a typical childhood cold or flu.  On x-ray, her lungs look like those of an elderly, life-long smoker with emphysema, and she suffers from asthma.  The human body is capable of regenerating lung tissue until around age 8, but no one knows how much her little body will be able to repair.

After we noticed more and more significant delays in major motor milestones, and she began complaining of foot and hip pain, we visited a long list of specialists who diagnosed her with Cerebral Palsy at age four.  It primarily affects her lower extremities and is classified as “mild,” but presents significant challenges for her in daily activities including walking, strength and balance.

She has additionally been diagnosed with Sensory Processing Disorder and Developmental Dyspraxia.  We attend regular physical and occupational therapy sessions to help with all of these areas, as well as a long list of pediatric specialists who track her progress.

Aside from all those medical and developmental labels, she is a little girl full of joy who loves to share it with the world.  If she’s awake, she never stops talking, and she’s often too smart for her own good.  She loves to boss anyone who will allow it and looks to be on track for ruling the world.  We just hope to channel these skills for good and not evil. 🙂

I’m writing this blog to connect with other stay-at-home moms and journal about my own experiences. For those of you visiting with special needs children of your own, I have a weekly post on Sunday (Special Needs Sunday) that addresses some of the issues we’ve gone through. Hopefully, the information and experiences I share will help to make someone else’s journey a little bit easier.

If you want to know more about Jenna’s start in the world, read here and here.

If you want to learn more about short bowel syndrome, read here and here.

 

10 responses to “About Jenna

  1. Deborah

    July 24, 2008 at 4:59 pm

    Good afternoon!

    Would you consider being interviewed and featured on one of my Sunday Bloggy interviews for the 5 Minutes For Special Needs site? I think you have a wealth of information to share and I know our readers would love getting to know you.

    If you agree, I will send you some interview questions by email. You can just email them back to me when you have finished, and if you have a picture you would like to share, that would be great also.

    Thanks for considering this!
    Deborah
    http://pipecleanerdreams.blogspot.com
    http://www.5minutesforspecialneeds.com/

     
  2. psychmamma

    July 24, 2008 at 10:25 pm

    Deborah –

    Heck yeah! I’d consider it an honor. I love your site and am so glad that you’re filling a niche that was sadly in need of filling for far too long. I’m sending you an email response and look forward to hearing from you!

     
  3. Heather

    August 1, 2008 at 6:07 pm

    Since I’m new here I just read this bit about Jenna’s condition. First, it puts a whole lot in perspective for me. My baby has had terrible digestive issues, but when tested (and tested and tested and tested) they could find no serious conditions like Jenna’s. It turns out he’s simply slow to mature, causing all sorts of digestive stuff. So I can only claim to understand on a very small scale what you have gone through. My boy screamed for six months straight and we spent much time trying to figure out his tummy. It’s so hard to be so helpless and to watch as your child suffers. You’re a very strong lady…
    Thank you for sharing yourself in this way. I’m sure moms out there with similar issues are so glad you’ve extended this understanding hand and surplus of good information.

     
  4. psychmamma

    August 1, 2008 at 9:10 pm

    Thanks Heather!

    The sharing is not selfless though. I’ve gained so much through the other parents I’ve met – many who are loving kids with much more serious conditions than Jenna’s. The connections I’ve made are truly priceless, and they include both parents of “typically developing” kids and “special needs” kids. Plus, the sharing is cathartic.

     
  5. Laura Bailey

    January 10, 2009 at 4:22 am

    Hi there!

    You left a very nice message on my son’s website (guestbook) and I just wanted to thank you for checking out Tyler’s story and introducing yourself. I can tell that you are one cool mama from reading some of your journal entries and Jenna is so very-very cute! I loved her birthday pictures! Tyler just turned 4 🙂 Do you live in the Los Angeles area? We would love to meet you guys in person sometime for a playdate….

    Hope to hear from you and so sorry it has taken me soooo long to write!

    All the best,

    Laura

     
  6. Ciera Granger

    February 4, 2009 at 1:33 am

    I’m so impressed with your site. I don’t know anyone personally to ask questions about having a kid with special needs. I have a healthy 4 year old and a 2 year old who has been through a lot. We spent almost 6 months at Children’s Hospital of Los Angeles and give or take 10 surgeries from head to toe. She has not been diagnosed with any over-all issue or syndrome, yet. She is trying to catch up. Thank you for sharing your experience. I’m thrilled to have read your blog about the mini feeding pump. We need that now!

     
  7. Julie

    March 15, 2012 at 12:32 am

    Hello,
    I”m glad I came across your blog. My 9month old baby girl, Isla, was diagnosed with Bronchiolitis Obliterans at 5months of age after a Parainfluenza virus at 6weeks of age. She has similar scarring to her small airways that we are hoping she’ll outgrow. She is itty bitty and is on home oxygen (plus meds) as well an NG feeding tube most recently. Grow grow grow Isla!!
    Jenna certainly has had a tough go, but it sounds as if she’s a real trooper. I hope we can continue to be as brave as the two of you. =)

     
  8. Michele

    August 26, 2012 at 12:23 pm

    Thank You! Thank You!!
    My sweet boy is now 5 years old. At less than 24 hours old he had is first bowel surgery. He was left with 19 cm of small intestine resulting in a diagnosis of Short Bowel Syndrome. 9 months of being in the NICU. It is always a struggle of weight. Thankfully, he has been at a steady level for over a year. Steady, not gaining though. Now, that he is old enough (and speech is well enough) I realize how much the formula bothers him. He currently takes Boost Kid essentials 1.5cal. It wasn’t until recently that I began researching making his food with a blender. I have hated the formula for some time. I want him to be getting Real foods, with all of the qualities and regenerative properties they possess. He recently was diagnosed with JIA arthritis and it has become an even larger motivator to change his diet.
    I can’t thank you enough for sharing what you have learned! Coming across your blog has given me hope and excitement that I didn’t know was possible.
    Thank you!
    Michele

     
  9. PsychMamma

    August 26, 2012 at 2:53 pm

    Michele –

    So glad to hear about someone else on the quest for health and happiness with real, whole food nutrition!

    Good luck and wishing you all the best! If you learn some tips or tricks, please come back to share them!

    🙂

     
  10. Joy

    November 24, 2012 at 10:33 pm

    It is good to have found your site, my little one is just over 2 and has special needs also but she is such a blessing to us bringing us countless joy. 🙂

     

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