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 GI doctor at UPMC (first time to seeing a UPMC GI doctor since Dr. Chu left in July) and he switched Kyle's formula to Neocate Jr. The plan was to keep him on Neocate Jr. for two weeks and if there was no changes then cycle his Periactin for two weeks on and one week off. If that didn't work, then cycle both Periactin and Erythromycin alternately. The vomiting was still bad on Neocate Jr. but we decided to keep him on it while cycling Periactin. Vomiting was really bad when we took him off of Periactin but it got significantly better when we restarted the Periactin five days later (couldn't wait a full week).
We have also been working with a new consulting firm on Kyle's feeding issues. With all the positive interactions he's had with food and around food they felt that Kyle was ready to try a wean. We cut his tube feeds by 30% last Friday and the vomiting is now almost non-existent. Kyle has started doing more tastings of food. We are still not allowed to feed him, but rather letting him feed himself. We would lay food and spoons filled with food in front of him and let him pick up the spoons and feed himself. If he did not do this then it meant he wasn't interested so we weren't supposed to force him. Kyle has been picking up the spoons and putting them in his mouth. However the amount is nowhere near enough for his caloric needs. Since he always seemed more interested in our plates instead of his one day I decided to pick him up from his seat and put him on my lap (we had been working on letting him self-feed in a strap-on high chair at the table with no tray so he didn't feel trapped and isolated) and he began digging in my bowl and grabbing my spoon. He also started licking/sucking on the edge of my bowl so I brought the spoon closer to his mouth and he ate some chili from my bowl. He continued to be interested and ate a bunch more. I was able to guide the spoon to his mouth (at the edge of the bowl) at least 20 times! He continued eating this way yesterday with porridge and soup. He also started showing interest in my cup and glass (not his) and yesterday he drank water from my glass for the first time and he did it repeatedly several times. He hasn't willingly drunken this much liquids since we stopped giving him bottles in early July! We are so thrilled with his progress! The amount he's taking is still minuscule and nowhere near enough for us to remove the tube yet but this is a great start!
Motor-wise Kyle has been practicing stepping/walking in his gait trainer. He is not really taking steps yet but he's learned how to move around and move forward in his gait trainer. He is very happy to be able to move around. His PT says for now we just want to get him moving and let him move around freely and then we'll teach him to take steps. Kyle is also very close to getting into the sitting position on his own. Kyle claps when we tell him he's doing a good job. One night he was upset and wanted to throw up but was able to swallow it back down. I told him that he did a good job and he started clapping! Yesterday he drank water for the first time and we were so happy and we clapped for him and told him he did a good job and again he started clapping. He also claps when he sees people claps on TV (usually during one of the clapping scenes when he's watching Super Simple Songs). Kyle also started saying "Dada" only when Josh is around. He's been saying mamamama and nanana a lot more recently, although not with purpose.
Kyle got sick for the first time ever a few weeks ago. I think he got sick from the GI's visit because there was a person coughing in the elevator as we were leaving. He had a low grade fever for a day and a runny nose for about a week. His doctor gave him some antibiotics and he was fully recovered in about a week.
Kyle has a few molars coming in. There is one on the bottom left that is almost completely erupted and more on the right that we currently see a white bud.
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 GI doctor at UPMC (first time to seeing a UPMC GI doctor since Dr. Chu left in July) and he switched Kyle's formula to Neocate Jr. The plan was to keep him on Neocate Jr. for two weeks and if there was no changes then cycle his Periactin for two weeks on and one week off. If that didn't work, then cycle both Periactin and Erythromycin alternately. The vomiting was still bad on Neocate Jr. but we decided to keep him on it while cycling Periactin. Vomiting was really bad when we took him off of Periactin but it got significantly better when we restarted the Periactin five days later (couldn't wait a full week).
We have also been working with a new consulting firm on Kyle's feeding issues. With all the positive interactions he's had with food and around food they felt that Kyle was ready to try a wean. We cut his tube feeds by 30% last Friday and the vomiting is now almost non-existent. Kyle has started doing more tastings of food. We are still not allowed to feed him, but rather letting him feed himself. We would lay food and spoons filled with food in front of him and let him pick up the spoons and feed himself. If he did not do this then it meant he wasn't interested so we weren't supposed to force him. Kyle has been picking up the spoons and putting them in his mouth. However the amount is nowhere near enough for his caloric needs. Since he always seemed more interested in our plates instead of his one day I decided to pick him up from his seat and put him on my lap (we had been working on letting him self-feed in a strap-on high chair at the table with no tray so he didn't feel trapped and isolated) and he began digging in my bowl and grabbing my spoon. He also started licking/sucking on the edge of my bowl so I brought the spoon closer to his mouth and he ate some chili from my bowl. He continued to be interested and ate a bunch more. I was able to guide the spoon to his mouth (at the edge of the bowl) at least 20 times! He continued eating this way yesterday with porridge and soup. He also started showing interest in my cup and glass (not his) and yesterday he drank water from my glass for the first time and he did it repeatedly several times. He hasn't willingly drunken this much liquids since we stopped giving him bottles in early July! We are so thrilled with his progress! The amount he's taking is still minuscule and nowhere near enough for us to remove the tube yet but this is a great start!
Motor-wise Kyle has been practicing stepping/walking in his gait trainer. He is not really taking steps yet but he's learned how to move around and move forward in his gait trainer. He is very happy to be able to move around. His PT says for now we just want to get him moving and let him move around freely and then we'll teach him to take steps. Kyle is also very close to getting into the sitting position on his own. Kyle claps when we tell him he's doing a good job. One night he was upset and wanted to throw up but was able to swallow it back down. I told him that he did a good job and he started clapping! Yesterday he drank water for the first time and we were so happy and we clapped for him and told him he did a good job and again he started clapping. He also claps when he sees people claps on TV (usually during one of the clapping scenes when he's watching Super Simple Songs). Kyle also started saying "Dada" only when Josh is around. He's been saying mamamama and nanana a lot more recently, although not with purpose.
Kyle got sick for the first time ever a few weeks ago. I think he got sick from the GI's visit because there was a person coughing in the elevator as we were leaving. He had a low grade fever for a day and a runny nose for about a week. His doctor gave him some antibiotics and he was fully recovered in about a week.
Kyle has a few molars coming in. There is one on the bottom left that is almost completely erupted and more on the right that we currently see a white bud.
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| Happy Thanksgiving! |
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| I want Daddy's cup! |
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| Happy Kyle |
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| Getting some self-stimulation from the vibrating teether |
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| Hello handsome guy! |
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| Kyle the penguin for Halloween |
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| Mmm..porridge! |
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| Love my spoon |
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| Trying to eat a biscuit |
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| I can now bring my feet to my mouth |
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| Eating chili |
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| Licking peanut butter off of the table |
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| Peanut butter face |
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| One happy baby covered in Nutella and peanut butter |
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| Eating soup |
Drinking water (Video)
In his gait trainer (Video)
Trying to crawl (Video)
Sitting up (Video)