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 and drinking enough AND he was taking all his medications by mouth so we decided to just leave it out. The day we pulled out the tube he drank 20 oz of milk. The next day he took 24 oz. The next day he took 28 oz! We were absolutely shocked and delighted! However, he drank too much too fast and he got sick after dinner both nights and vomited. He drank close to 8 oz at dinner both nights in less than 2-3 minutes and started crying about 30 seconds later. He acted uncomfortable and was crying for a while and then he puked. The days where he drank so much milk he also wasn't interested in anything else - no soup, no solids, no water. So constipation set in and we had to use enema twice to clean him out. His volume began to drop the day after he took 28 oz of milk. And it just kept dropping and eventually we had to put the tube back in about 10 days after we pulled it. I was really upset. It felt like the night before his G-tube surgery again the day before we knew we would have to put the tube back in. We had to give him extra water for three days, and extra milk for two of those three days.
Kyle pulled out his tube early in the morning three days after we put the tube back in. We decided to take the wait and see approach again and see how he did on his own. He began to pick up on volume a little bit, still extremely low but enough to sustain himself so decided to leave it out. He's now pretty much completely stopped eating soup, but his volume on milk has slowly picked up (although nowhere near what it was three weeks ago). And most importantly, he's now drinking water again so he's no longer constipated. He is now extremely interested in chewing on actual solid food - chicken nuggets, fish sticks, snacks, cut up buttered toast, etc. Unfortunately he doesn't quite have to skill to properly move food around in his mouth yet so the majority of what he does put in his mouth eventually falls out because he's not swallowing it. We have seen him slowly swallowing more so his skills are definitely improving, just a bit slow. However, I've been adding a lot of extra oil on the breading which is the part he likes the most so hopefully he's getting some calories just by chewing and keeping the food in his mouth for a while. It's now been another 10 days since he pulled out his NG tube himself and we are able to keep it off, for now. He is pretty much getting just the bare minimum every day and every day we live under the pressure of making the 18 oz fluids minimum. I start a tally in the morning and finally a breathe a sigh of relief when we get to 18 oz by the end of the day, and then of course the tally resets and we do it all over again! Don't be surprised if you see the tube back in at the next update (although we're keeping our fingers crossed that it won't).
Developmental-wise, Kyle is now walking faster on his own in his walker that's strapped to his chest. He still doesn't have enough arm strength to push the walker by himself but he takes steps pretty well with assistance. We are also working on helping him pull up to stand and have seen him try to pull himself up more and climbing up more. He also saw an orthopedic doctor last week just to make sure there's nothing wrong with him structurally, and everything looked fine - hips were in their sockets, legs were of the same length, spine was nice and straight, and the doctor didn't think he was all that spastic either. He thought Kyle was just delayed but since he was progressing nicely we just needed to give him more time to develop on his own, so nothing needs to be right now.
Kyle was denied Synagis shots by our new insurance. However, we applied for an assistance program and was approved so he got his third shot of the season, just a week and half late. He will be receiving three more shots until the RSV season is over. We are very relieved that he will be fully protected for the rest of the season.
Kyle pulled out his tube early in the morning three days after we put the tube back in. We decided to take the wait and see approach again and see how he did on his own. He began to pick up on volume a little bit, still extremely low but enough to sustain himself so decided to leave it out. He's now pretty much completely stopped eating soup, but his volume on milk has slowly picked up (although nowhere near what it was three weeks ago). And most importantly, he's now drinking water again so he's no longer constipated. He is now extremely interested in chewing on actual solid food - chicken nuggets, fish sticks, snacks, cut up buttered toast, etc. Unfortunately he doesn't quite have to skill to properly move food around in his mouth yet so the majority of what he does put in his mouth eventually falls out because he's not swallowing it. We have seen him slowly swallowing more so his skills are definitely improving, just a bit slow. However, I've been adding a lot of extra oil on the breading which is the part he likes the most so hopefully he's getting some calories just by chewing and keeping the food in his mouth for a while. It's now been another 10 days since he pulled out his NG tube himself and we are able to keep it off, for now. He is pretty much getting just the bare minimum every day and every day we live under the pressure of making the 18 oz fluids minimum. I start a tally in the morning and finally a breathe a sigh of relief when we get to 18 oz by the end of the day, and then of course the tally resets and we do it all over again! Don't be surprised if you see the tube back in at the next update (although we're keeping our fingers crossed that it won't).
Developmental-wise, Kyle is now walking faster on his own in his walker that's strapped to his chest. He still doesn't have enough arm strength to push the walker by himself but he takes steps pretty well with assistance. We are also working on helping him pull up to stand and have seen him try to pull himself up more and climbing up more. He also saw an orthopedic doctor last week just to make sure there's nothing wrong with him structurally, and everything looked fine - hips were in their sockets, legs were of the same length, spine was nice and straight, and the doctor didn't think he was all that spastic either. He thought Kyle was just delayed but since he was progressing nicely we just needed to give him more time to develop on his own, so nothing needs to be right now.
Kyle was denied Synagis shots by our new insurance. However, we applied for an assistance program and was approved so he got his third shot of the season, just a week and half late. He will be receiving three more shots until the RSV season is over. We are very relieved that he will be fully protected for the rest of the season.
Kyle walking (video)
Kyle playing with maracas (video)
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| Crawled out of his mat |
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| Eating pork chop |
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| Chewing on tater tots |
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| Riding the elephant |
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| Eating veggie chip |
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| Hello, baby! |