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Sep 14 - Look at me! I can walk!!
Sep 14th - We started outpatient physical therapy four times a week right after we got back from St. Louis in July. We also do daily stretches (once in the morning and once in the evening) and multiple...
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July 12 - SDR surgery at St. Louis Children’s Hospital
July 12th - we arrived at St. Louis Tuesday evening for Kyle’s SDR surgery today. We left home Monday morning and spent the night in Dayton, OH. We also got to meet Teddy and his family in Dayton....
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Jun 13 - Three Year Update
June 13th, 2018 - Kyle turned three a little over a week ago! It was a quiet home celebration but nevertheless we were excited about all the progress he's made. A lot has happened since the last...
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Oct 17 - Bye-bye Topamax
Oct 17 - I cried as I gave Kyle his last dose of Topamax tonight. Two years and three months after we started him on Topamax he is now completely off of it. Tons of emotions rushed through my mind as I...
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Sep 30 - Great Motor Progress but Struggling with Feeding Again
Sep 30th - Kyle has made great progress in his motor skills in the past two months. Three weeks after his Botox injections, he was able to walk by holding just one hand. He is now able to stand...
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Aug 8 - Overnight EEG, Botox Injections, Dental Work
Aug 8th - Kyle had two doctor's appointments last Thursday. First he saw Dr. Lubicky, the orthopedic surgeon. He recommended Botox injections for his legs to help relax the tightness in his hamstrings....
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Jul 17 - EEG
Jul 17th - Kyle has been making great progress in his mobility. He is now cruising along furniture with ease, transitioning among multiple surfaces (i.e. going from the couch to the band toy, back to...
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Jun 3 - Two Years Old
Jun 3rd - Kyle turned two today! Where did time go? I can't believe this little guy is two already! As happy and excited as I was, I couldn't help but remember what happened two years ago, almost hour...
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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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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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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...
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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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...
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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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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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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...
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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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...
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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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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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