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 Kyli M. Abbinanti
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"If you have faith the size of a mustard seed, you can say to this mountain, 'move from here to there,' and it will move. Nothing will be impossible for you." ~Mathew 17:20


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  SATURDAY, OCTOBER 04, 2008 01:28 AM, EDT
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Love always protects, always trusts, always hopes, and always perseveres. Let’s fight the good fight, finish the race, and keep the faith!


WE DID IT! Thank you for your enthusiastic participation in 30 Days for Kyli. We are so grateful to The Process for founding and sponsoring this special event. T-shirts and more will remain available at: http://www.cafepress.com/processfitness

We hope you had fun as you strived to reach your goal. Don’t worry if you did not achieve all you set out to do. (I know I didn’t.) The important thing is you tried and will keep on trying! NEVER GIVE UP! We had participation from people all over the country. Thank you for taking the 30 Days for Kyli Challenge so seriously. Kyli was thrilled to receive her first calendar in the mail today from Neil in New Jersey! What a fun surprise.

With your good thoughts and prayers coming our way, Kyli maintained her weight at 31 lbs and grew about an inch. Considering not long ago I could easily touch my middle finger to thumb when wrapping it around her thigh, it’s a victory that I can now barely touch finger to thumb when wrapping it around her shin!

Kyli had an appointment yesterday (10/2) with her Gastro-Intestinal Doctor. To date the GI team has been a source of frustration for us. They have highly criticized the Specific Carbohydrate Diet (SCD) we have Kyli on. This particular diet is designed to help manage inflammatory bowel disease. Much to our surprise, yesterday GI was impressed that according to their documentation Kyli gained 4.5lbs in three months and grew 2.5CM! The Dr. said, “Whatever you are doing, keep doing it. If she keeps this up she will be thriving in a few years.” THRIVING!?!? WOW. It was the first time I we heard something that had a hint of positive hope from GI. It’s as if things are coming full circle. (Our journey started with Kyli being diagnosed as Failure to Thrive.) We mentioned we had not changed her diet much other than to add in homemade yogurt, and the Dr. acknowledged that this form of yogurt is very potent and used in India for gut problems. I was pleased the GI seemed to understand our approach and the healing properties of this yogurt. It has served to help clear her gut so that she can better absorb nutrients.

Though this is a promising sign, we know we have a long road ahead. We are still very concerned about the fact that Kyli is grimacing daily and having brief seizures in response to pain resonating from her abdomen. We are going to give her diet some more time to have an impact. Per GI’s recommendation, now that her weight is improving, we will also start giving her belly a 6 hour rest. For the past six months Andy and I have been giving her food hourly 24/7. Sometimes TIME and REST are the best prescription. Waiting is always hard, especially when Kyli is so incredibly uncomfortable and we are not able to offer much relief other than prayers, belly rubs, and soothing reassurance. We will hold fast to the important progress we have seen in her physiological foundation and trust that progress will continue. We’ve waited six long years, so thriving in a “few more years” sounds good to us.

Finally, we have results on the Cerebral Spinal Fluid (CFS) Study done in June. All tests came back normal with the exception one. The HVA Pathway (a byproduct of dopamine) was low, but they do not know why. Corresponding variables from other lab tests do not line up to paint a clear picture. For now, it is just a clue in this big mystery that no one seems able to solve. We hope with continued progress with nutrition this will change. At this point, there is nothing to actually do about it, except trust that God’s timing is perfect and that He will continue to lead us.

Please continue prayers for Kyli ….

  • To remain pain and seizure free;

  • To fully heal her belly;

  • To continue growth and weight gain;

  • To restore use of her left hand so she can clap once again;

  • To resume eating and drinking at least 70% of her nourishment independently by mouth (vs. feeding tube);

  • To have peaceful, regular sleep patterns;

  • To resume participation in therapeutic activities;

  • For wisdom and guidance for the practitioners on Kyli’s care team; and

  • To restore the frequency of her smiles and giggles to be a regular, daily occurrence. (Oh how my heart longs to hear Kyli’s giggle again. Follow this link to view a clip of Kyli laughing last Fall 2007: http://www.youtube.com/watch?v=bDXBsefBhhU

Thanks again for joining us. My postings will be less frequent now that September is over. We hope you will continue to follow Kyli’s story through her CaringBridge journal. We wait in hopeful anticipation for the victories ahead and look forward to sharing them with you.


broken I run to You
for Your arms are open wide
I am weary but I know Your touch restores my life
so I'll wait for You
so I'll wait for You
I'm falling on my knees
offering all of me

~Offering All of Me, Joy Williams

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Your prayers and encouragement remind us that there is indeed a higher purpose to our challenge. Thank you for supporting us through tough times and celebrating victories with us. We feel privileged and blessed to be recipients of so much love.

Jodi, Andy & Kyli

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EMAIL AUTHOR
jkabbinanti@verizon.net

HOSPITAL INFORMATION
Stony Brook Medical Center
Stony Brook, NY 11794
United States
631-444-4000