Clik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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 ArticleClik here to view.
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,...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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 ArticleClik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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....
View ArticleClik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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...
View ArticleClik here to view.
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....
View ArticleClik here to view.
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...
View Article