Averi is really starting to get the hang of eating solids. We can now present the bananas in the middle of her mouth as well. When giving her a bottle, she will usually give a few good sucks before deciding that she doesn’t like the liquid coming out and promptly blowing milk raspberries.
Since bottle feeding is the bigger concern at this point, it was our soul focus today. Francis did bring the Haberman Feeder, but apparently it needs a special ring that wasn’t ordered so we can’t use it. Grrrrr.
I had a syringe with me, so we tried filling it up with milk and squirting small amounts into the side of Averi’s mouth allowing her to swallow it without getting too much. This worked a little better than the bottle. I asked Francis if there is ever going to be a time when we realize that bottle feeding isn’t going to happen and move on to cup feeding. She said that right now the problem isn’t how the milk is getting into her mouth (bottle or cup) it’s that she doesn’t know what to do with it when it gets there (swallow). So I guess we will keep working on liquids.
Francis is also trying to find a solution for Averi’s biting. Apparently she bites while trying to suck and inadvertently bites down on her tongue. This is good news in that she has a really strong bite but bad news because she associates the pain of biting with sucking.
I asked if she might be ready for finger foods so we got some out to try. We broke puffs in half and put them into her cheek so she couldn’t spit them out. She chewed on them a little but mostly just let them dissolve. She did turn her tongue towards the food, which I’m told is a good thing.
Francis also got out some graham crackers to see if Averi liked being able to chew on something. She did pretty well since she’s such a good biter and it wasn’t until I got home that it dawned on me that I’m not allowed to eat graham crackers because they have soy in them and that Averi definitely shouldn’t be eating them. Opps! At least she didn’t eat too much.
The last thing that Francis suggested was that we try switching over to at least one bolus feed a day, where a whole feed is given over a shorter amount of time and then there is a break before the next feed. Averi currently has two 4 hour breaks during the day and we feed her at the end of each one. Having a bolus feed, however, would teach her to recognize hunger because it would allow her stomach to stretch and shrink and her blood sugar to rise and fall. We’ll see what GI says.
Monday, January 25, 2010
Monday, January 18, 2010
OT: Week 2, Solids
After working on it for a week, the bottle feeding hasn’t gotten any better. We now try to feed Averi twice a day and we always present the bottle first in hopes that she’ll have lots of energy but I think she’s on to us.
However, we did make some progress presenting the smaller spoon on the side and Averi is keeping more in her mouth after each bite. Unfortunately, this girl LOVES to blow raspberries! I kid you not when I say that one night I had to have Dan take over feeding so I could flush a large chunk of rice cereal out of my eye. She’s got distance and aim!
Today, Francis decided that we should start using a NUK nipple since it is more conducive to chewing, as opposed to sucking. She also said that we could leave the nipple in Averi’s mouth while she swallows, even if it is just off to the side.
Francis was going to bring a Haberman Feeder for us to try (they don’t have many supplies at the off campus centers) but she forgot. I hope she remembers it next week because I really think it will help. It is a special nipple that is designed to work with chewing and only lets a little bit of milk out at a time.
Since the rice cereal was going well we tried presenting it in the middle of Averi’s mouth and she handled it pretty well. Then we got a little crazy and tried feeding her bananas. She was a little confused by the different texture so we had to use the small spoon on the side but she was still able to swallow them without much spill out.
I also learned a fun fact today. Averi has two lines going down her tongue instead of the customary one in the middle. This is not a side effect of DS, like I thought, it is because tongues are muscles and she works hers out a little differently, causing the definition to be a little different as well. Francis said she has even seen kids with three lines on their tongues and they were still able to learn how to eat.
However, we did make some progress presenting the smaller spoon on the side and Averi is keeping more in her mouth after each bite. Unfortunately, this girl LOVES to blow raspberries! I kid you not when I say that one night I had to have Dan take over feeding so I could flush a large chunk of rice cereal out of my eye. She’s got distance and aim!
Today, Francis decided that we should start using a NUK nipple since it is more conducive to chewing, as opposed to sucking. She also said that we could leave the nipple in Averi’s mouth while she swallows, even if it is just off to the side.
Francis was going to bring a Haberman Feeder for us to try (they don’t have many supplies at the off campus centers) but she forgot. I hope she remembers it next week because I really think it will help. It is a special nipple that is designed to work with chewing and only lets a little bit of milk out at a time.
Since the rice cereal was going well we tried presenting it in the middle of Averi’s mouth and she handled it pretty well. Then we got a little crazy and tried feeding her bananas. She was a little confused by the different texture so we had to use the small spoon on the side but she was still able to swallow them without much spill out.
I also learned a fun fact today. Averi has two lines going down her tongue instead of the customary one in the middle. This is not a side effect of DS, like I thought, it is because tongues are muscles and she works hers out a little differently, causing the definition to be a little different as well. Francis said she has even seen kids with three lines on their tongues and they were still able to learn how to eat.
Monday, January 11, 2010
OT: Week 1
A few days after Christmas break I received a phone call stating that there was an opening for OT every Monday…at 8am. Openings don’t happen very often, especially at the ‘Close to Home’ center (so we don’t have to go all the way to the hospital) and if I said no who knew when the next opening would be, so I took it.
For those of you who don’t know, wake up time is 8:00 at our house so it has taken a lot of determination to pack the night before, wake the girls up early and get to OT on time. The good news is that I really think it is going to pay off.
So, today was the first of 8 weeks of occupational therapy. Since it was the first visit Francis, our OT, mostly let me feed Averi so she could see what we’ve been doing and how she handles it. She told us to work on letting Averi chew on a half full nipple until she got some milk and then removing the nipple so she could swallow.
She also told us to use kind of a mini spoon to put rice cereal into Averi’s cheek so that she could take her time moving the food to the back of her throat instead of gagging on it when a large amount is sent straight to the back of her throat with a regular spoon.
I also learned that scooping the food off on the roof of her mouth is bad since it doesn’t encourage her to bring her lips together. So now we pull the spoon straight out, forcing her to bring her top lip down in order to get any food.
For those of you who don’t know, wake up time is 8:00 at our house so it has taken a lot of determination to pack the night before, wake the girls up early and get to OT on time. The good news is that I really think it is going to pay off.
So, today was the first of 8 weeks of occupational therapy. Since it was the first visit Francis, our OT, mostly let me feed Averi so she could see what we’ve been doing and how she handles it. She told us to work on letting Averi chew on a half full nipple until she got some milk and then removing the nipple so she could swallow.
She also told us to use kind of a mini spoon to put rice cereal into Averi’s cheek so that she could take her time moving the food to the back of her throat instead of gagging on it when a large amount is sent straight to the back of her throat with a regular spoon.
I also learned that scooping the food off on the roof of her mouth is bad since it doesn’t encourage her to bring her lips together. So now we pull the spoon straight out, forcing her to bring her top lip down in order to get any food.
Thursday, January 7, 2010
First Solids...Sort of
I was recently informed that you can change the date on a post so even though it is now February, I can make it look like I wrote this in December when it actually happened. How cool is that?
So I know that Averi already had rice cereal at the swallow study and at the OT evaluation, but we had to get the traditional ‘parents first time to feed their child solids’ on video. Since this requires both parents, one to feed and one to video, it didn’t happen until after Christmas.
Getting ready for the big event.
I know you have all been looking forward to this really exciting video, so here it is.
Averi was making some pretty good faces.
Another really exciting video that shows how much better she’s doing after just a week and a half of practice. Kaili thought something was really funny.
So I know that Averi already had rice cereal at the swallow study and at the OT evaluation, but we had to get the traditional ‘parents first time to feed their child solids’ on video. Since this requires both parents, one to feed and one to video, it didn’t happen until after Christmas.
Getting ready for the big event.
I know you have all been looking forward to this really exciting video, so here it is.
Averi was making some pretty good faces.
Another really exciting video that shows how much better she’s doing after just a week and a half of practice. Kaili thought something was really funny.
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