Kai turned 15 months on January 14
th. He is weighing in at 16 pounds, 10 ounces!!! We just can't believe how much he has gained since he was discharged from the hospital at the beginning of the month. Kai is about 29 inches long. His height to weight isn't even on the charts. Kai has really bounced back from when he was sick. He is doing very well right now. It took a little over a week after being home from the hospital to get him back on track with feedings. I'm not sure what it is now, growth spurt or something but he is very interested in food and is eating quite a bit. He doing 132
mls bolus feeds on the G, four times a day and 24
mls/hr for 6-8 hrs drip feed on the J overnight. He is also eating orally 4-8 ounces at least 3 times a day. We are still working with oral liquids. He has a hard to with control of his mouth. He does some liquid orally, but not much. He is working towards some table foods. In the last week he has tried; pancakes, bread, cheese, chicken nuggets, french fries, fish fillet, mac-n-cheese, lasagna, garlic bread, cream of wheat, cheese and gold fish. He is a little
hesitant at first with a new food, but eventually will try it. He still has no teeth. Next Thursday, he is going to see a pediatric dentist. I think once he gets teeth, he is going to be even more interested in food orally. Kai is doing so well right now. He just started crawling on hands and knees. Before he would just tummy crawl. He gets to where he wants to be, but sometimes takes a break in between. He is pulling himself up and trying to stand up. It's hard for him to
maneuver his legs. They don't always cooperate with him. About a week ago, he sprained his foot some how. So he has had a swollen foot. Hopefully the swelling will go away soon. Kai is working on sit to stand. It is hard for him. He is so motivated and has the strength. He is lacking in stability. With his connective tissue disorder, everything is loose inside.
Then he has all his joint issues, his joint always pop in and out. Kai will probably never be able to walk completely on his own. He is going to have to have some kind of assistance, whether it's some kind of braces or walker of some sort. He is also going to probably have a wheel chair. This would help Kai move around in the world a little easier. We are meeting up with the
rehabilitation doctor on Monday to start the process of getting a wheelchair for him. Kai is always saying specific sounds for specific words. This is absolutely wonderful because he is starting to communicate more than just baby babble and crying. He also will mimic rhythm. It is just awesome how well he has bounced back from surgery and being sick (he was in the hospital for about 16 days total). He is an amazing little boy! Very happy, determine and self motivated. He is not going to let his condition stand in his way.
Kai turned 15 months on January 14th. He is weighing in at 16 pounds, 10 ounces!!! We just can't believe how much he has gained since he was discharged from the hospital at the beginning of the month. Kai is about 29 inches long. His height to weight isn't even on the charts. Kai has really bounced back from when he was sick. He is doing very well right now. It took a little over a week after being home from the hospital to get him back on track with feedings. I'm not sure what it is now, growth spurt or something but he is very interested in food and is eating quite a bit. He doing 132 mls bolus feeds on the G, four times a day and 24 mls/hr for 6-8 hrs drip feed on the J overnight. He is also eating orally 4-8 ounces at least 3 times a day. We are still working with oral liquids. He has a hard to with control of his mouth. He does some liquid orally, but not much. He is working towards some table foods. In the last week he has tried; pancakes, bread, cheese, chicken nuggets, french fries, fish fillet, mac-n-cheese, lasagna, garlic bread, cream of wheat, cheese and gold fish. He is a little hesitant at first with a new food, but eventually will try it. He still has no teeth. Next Thursday, he is going to see a pediatric dentist. I think once he gets teeth, he is going to be even more interested in food orally. Kai is doing so well right now. He just started crawling on hands and knees. Before he would just tummy crawl. He gets to where he wants to be, but sometimes takes a break in between. He is pulling himself up and trying to stand up. It's hard for him to maneuver his legs. They don't always cooperate with him. About a week ago, he sprained his foot some how. So he has had a swollen foot. Hopefully the swelling will go away soon. Kai is working on sit to stand. It is hard for him. He is so motivated and has the strength. He is lacking in stability. With his connective tissue disorder, everything is loose inside. Then he has all his joint issues, his joint always pop in and out. Kai will probably never be able to walk completely on his own. He is going to have to have some kind of assistance, whether it's some kind of braces or walker of some sort. He is also going to probably have a wheel chair. This would help Kai move around in the world a little easier. We are meeting up with the rehabilitation doctor on Monday to start the process of getting a wheelchair for him. Kai is always saying specific sounds for specific words. This is absolutely wonderful because he is starting to communicate more than just baby babble and crying. He also will mimic rhythm. It is just awesome how well he has bounced back from surgery and being sick (he was in the hospital for about 16 days total). He is an amazing little boy! Very happy, determine and self motivated. He is not going to let his condition stand in his way.
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