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Jul 20 - Calmer seasions
Jul 20th - Kyle was mostly happy and calm for all of his therapy sessions today. He smiled for the entire OT session today and was a lot more receptive to the finger feedings today although there was...
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Jul 24 - Staying here for two more weeks
Jul 24th - We had a family meeting on Thursday with all the therapists and specialists. Much to our disappointment they did not feel that Kyle's feeding issues would improve significant enough to...
View ArticleJul 28 - Great improvements on motor skills
Jul 28th - Kyle's main speech therapist says that Kyle is actually orally defensive and not aversive. The symptoms and reactions when food is presented are defensiveness and not aversion. He is highly...
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Aug 3 - Going home tomorrow
Aug 3rd - While Kyle's gross and fine motor skills have improved by leaps and bounds in the past three weeks his feeding has not. We are going home tomorrow still 100% tube fed. We are hoping to get a...
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Aug 11 - Improved Vision
Aug 11th - We have been so focused on Kyle's feeding issues for the last few months we've put his vision problems on the back burners even though at the Children's Institute they really feel that...
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Aug 28 - NICU Reunion
Aug 28th - We took Kyle to his first NICU reunion today. I have been looking forward to the reunion since the moment I stepped out of the NICU last year. I was disappointed that Kyle would show up with...
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Sep 20 - Determined to figure out the feeding issues
Sep 20th - We spent close to a month with an online tube weaning program to try to get Kyle to eat. He started showing more interest in food and became slightly less aversive as we went down on the...
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Sep 23 - One year adjusted
Sep 23rd - Kyle turned one year adjusted today. He is still not at the level of a normal one year old but he has come a long way and exceeded doctors' expectations. He is not crawling, standing...
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Sep 29 - One year homecoming anniversary
Sep 29th - Today marked one year since Kyle came home from the NICU. I can't believe it's been a year already! Kyle has come a long way in the past 366 days (leap year!) A year ago all he did was sleep...
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Oct 24 - New GI at UPMC
Oct 24th - Kyle's the vomiting is back and it's pretty bad again - at least twice a day and as much as five times a day so needless to say his weight hasn't been going up because of it. He is getting...
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Nov 24 - Thanksgiving Update 2016
Nov 24th - Lots of updates here.Kyle's vomiting was out of control again - up to 8 or 9 times a day and was puking out more than half of his feeds constantly right after the feeds ended. Kyle saw a new...
View ArticleDec 9 - Eating, Drinking, and Sitting Up
Dec 9th - Kyle has been showing more consistent interest in eating & drinking. As of the last update he was showing sporadic interest - maybe one or two meals a day he'd be eating something. In the...
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Dec 25 - Christmas Update 2016
Dec 25th - This is Kyle's second Christmas. I can't believe all the progress he's made in the past few weeks, let alone the past year! Last Christmas we weren't sure if he could see at all and now he's...
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Jan 7 - Crawling, Pivoting, Stepping, and STOPPING ALL TUBE FEEDS!!
Jan 7th - Kyle has made great progress in all areas in the past few weeks. We are thrilled with all of his new skills. He's now army crawling so much faster and efficient, he's pivoting left and right,...
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Feb 5 - Tube out, Tube in, Tube out Again
Feb 5th - A little over a week after we stopped all tube feeds it was time to replace Klye's NG tube (changed once a month) and we decided to leave it out for the day to see how he did. He was eating...
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Mar 17 - Still tube free with a limited diet
Mar 17th - Kyle is still tube free but getting 99% of his nutrition from high calorie fortified milk. However, his feedings have been going up and down. He was drinking milk very well but wasn't...
View ArticleMar 27 - Second Feeding Clinic Visit
Mar 27th - We had a second visit to see the dietitian at the local feeding clinic last week. It had been almost a year since our last visit there for the feeding evaluation. A year ago, Kyle was still...
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Apr 18 - Putting the Tube Back in
Apr 18th - In a dramatic turn of events we unfortunately had to put the tube back in today.Kyle had been doing pretty well with this feedings the past few weeks. Then he started not wanting anything at...
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Apr 27 - Removing Negative Influences
Apr 27th - Kyle's NG tube was short lived! A day and half after we put the tube back in he puked it out at bed time after taking his night time medications. I think the tube was bothering him and...
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May 6 - Pulling up to Stand
May 6th - Kyle continues to make great progress in his motor skills. He is now able to pull himself to stand from the floor to the couch. When he first started doing it he was transitioning from the...
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