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 unassisted for around three minutes at a time while being distracted by TV or songs. He is pulling up to stand everywhere - at his toys, the coffee table, the TV stand, in his crib, and even in the bath! He is also able to climb up the stairs unassisted.
This week we celebrated Kyle's second adjusted birthday (he's officially TWO!) and his second home-coming from the NICU! Still emotional at times to think about what it was like two years ago but beyond thrilled with all the progress he's made in the last two years!
Kyle is now going to music class! We started him at Kindermusik. This was Kyle's first encounter with other kids. He is in the baby class but since he's so small he's pretty much the same size as kids a year younger than him and about the same developmentally. He's been to three sessions so far and he started noticing other kids at the second session. He is very happy at the class - always squealing, giggling, laughing, crawling around, and excited. He really enjoys the class!
The Topamax wean is going well. We have not seen any seizure-like activities since we started the wean and we are now 2.5 weeks away from Topamax-free! Unfortunately the wean doesn't seem to have increased his appetite at all but we will see what happens when he's completely weaned off. I am also hoping to wean him off of Prevacid after Topamax, since he hasn't exhibited any signs of reflux in the last 2-3 months. Some parents have reported increased appetite after weaning off of Prevacid so that is my next hope!
I'm sad to report that Kyle's milk intake has drastically decreased in the past month or so, both in total fluid intake and in total calories consumed per day. He has not vomitted in 2-3 months though after slowly decreasing his intake from 3-4 oz per feeding, to 2-3 oz per feeding, to 1-2 oz, to as low as less than half an ounce now. I think he's really tired of his milk and wants to eat solids. We started with a new speech therapist about a month ago and she has some great ideas and suggestions for us to try. Instead of sitting on our lap, she wants Kyle in his own booster seat at dinner with his own plate of food. We are still assisting him with water and milk during the meal but he's pretty much playing/eating solids on his own. This move has increased his interest in solids tremendously and he's putting more food in his mouth and chewing for longer periods of time. However, he is still unable to manage the food in his mouth and therefore not a whole lot is swallowed. Since he wants to be a big boy and eat big boy food, milk is now just a beverage to him. He is not rejecting milk so to speak but he does not want to drink it as a meal anymore. He will take a sip or two and he's done. I'm now forced to offer more table meals 3-4 times a day (mostly snack items except for dinner) along with milk and water. He will reach for the milk and water and drink it as a beverage. I really wish there was another way or another beverage with calories that he will take but I think at this point he is pretty much done with "drinking" all of his calories. Since he doesn't like anything sweet, juice or other type of smoothies don't work either even if he is willing to drink his calories. At the directions of the speech therapist, we are also doing one therapy session a day when Kyle sits in the feeding table and we put small pieces of soft foods in his mouth, and directly pressed down on one of his bottom molars to let him learn how to lateralize his tongue. He was very resistant at the start and tried to bite us but a few days later he started opening his mouth to let us feed him. He still tries to let the majority of the pieces fall out but we've come up with some meltable foods that are hard to spit out like peanut butter dipped in cracker crumbs and soft cheese pieces. I have also started drizzling lots of oil and sprinkling tons of powdered heavy cream on his foods in hopes that as long as the food makes into his mouth and he chews on it for just a little bit some of those extra calories will stay in his mouth even when the solid pieces of food don't.
Kyle also had his six-months GI follow-up this past week. Even with the weight loss in the last three weeks his overall growth was still good and his doctor said he was still following his own growth curve so there were no concerns with this growth at this time and she never mentioned the feeding tube once. However, if he doesn't start swallowing more solid foods and continues to sip his milk as an occasional beverage then we will have to consider the possibility of tube feeding him again.
This week we celebrated Kyle's second adjusted birthday (he's officially TWO!) and his second home-coming from the NICU! Still emotional at times to think about what it was like two years ago but beyond thrilled with all the progress he's made in the last two years!
Kyle is now going to music class! We started him at Kindermusik. This was Kyle's first encounter with other kids. He is in the baby class but since he's so small he's pretty much the same size as kids a year younger than him and about the same developmentally. He's been to three sessions so far and he started noticing other kids at the second session. He is very happy at the class - always squealing, giggling, laughing, crawling around, and excited. He really enjoys the class!
The Topamax wean is going well. We have not seen any seizure-like activities since we started the wean and we are now 2.5 weeks away from Topamax-free! Unfortunately the wean doesn't seem to have increased his appetite at all but we will see what happens when he's completely weaned off. I am also hoping to wean him off of Prevacid after Topamax, since he hasn't exhibited any signs of reflux in the last 2-3 months. Some parents have reported increased appetite after weaning off of Prevacid so that is my next hope!
I'm sad to report that Kyle's milk intake has drastically decreased in the past month or so, both in total fluid intake and in total calories consumed per day. He has not vomitted in 2-3 months though after slowly decreasing his intake from 3-4 oz per feeding, to 2-3 oz per feeding, to 1-2 oz, to as low as less than half an ounce now. I think he's really tired of his milk and wants to eat solids. We started with a new speech therapist about a month ago and she has some great ideas and suggestions for us to try. Instead of sitting on our lap, she wants Kyle in his own booster seat at dinner with his own plate of food. We are still assisting him with water and milk during the meal but he's pretty much playing/eating solids on his own. This move has increased his interest in solids tremendously and he's putting more food in his mouth and chewing for longer periods of time. However, he is still unable to manage the food in his mouth and therefore not a whole lot is swallowed. Since he wants to be a big boy and eat big boy food, milk is now just a beverage to him. He is not rejecting milk so to speak but he does not want to drink it as a meal anymore. He will take a sip or two and he's done. I'm now forced to offer more table meals 3-4 times a day (mostly snack items except for dinner) along with milk and water. He will reach for the milk and water and drink it as a beverage. I really wish there was another way or another beverage with calories that he will take but I think at this point he is pretty much done with "drinking" all of his calories. Since he doesn't like anything sweet, juice or other type of smoothies don't work either even if he is willing to drink his calories. At the directions of the speech therapist, we are also doing one therapy session a day when Kyle sits in the feeding table and we put small pieces of soft foods in his mouth, and directly pressed down on one of his bottom molars to let him learn how to lateralize his tongue. He was very resistant at the start and tried to bite us but a few days later he started opening his mouth to let us feed him. He still tries to let the majority of the pieces fall out but we've come up with some meltable foods that are hard to spit out like peanut butter dipped in cracker crumbs and soft cheese pieces. I have also started drizzling lots of oil and sprinkling tons of powdered heavy cream on his foods in hopes that as long as the food makes into his mouth and he chews on it for just a little bit some of those extra calories will stay in his mouth even when the solid pieces of food don't.
Kyle also had his six-months GI follow-up this past week. Even with the weight loss in the last three weeks his overall growth was still good and his doctor said he was still following his own growth curve so there were no concerns with this growth at this time and she never mentioned the feeding tube once. However, if he doesn't start swallowing more solid foods and continues to sip his milk as an occasional beverage then we will have to consider the possibility of tube feeding him again.
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| At Kindermusik |
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| Standing on his own |
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| Look how much straighter I"m standing now |
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| Pulling up in his crib |
Walking with his push walker (video)
Walking with one hand held - today (video)
Walking with one hand held for the first time - a month ago (video)
Someone discovered how the microphone worked at his band toy (video)
Kyle's first time in the pool (video)