Today was quite the busy day! We had OT first thing. W was a little cranky--I had to wake him up at 6:30am to feed him breakfast because he could not eat or drink after 7am. By the time Miss M got here, he was mad and uncooperative. She was patient, though, and got him distracted enough to play a bit.
After OT, we were off to the Children's Hospital for yet another swallow study. We do them about every 4-5 months and are always disappointed by the results. W threw a big massive tantrum over having to sit in the radiology chair and refused to drink his barium solution. He was so hungry! They gave him a graham cracker and a car to take home and that calmed him down and then he drank 2 ounces of thin liquid in 17 seconds and had no aspirations or penetrations! YAHOO! They want us to continue to thicken for a few days at half the amount of thickener to ease him from nectar to thin but after that he is cleared to drink normally :) The SLP did say to continue with his very thin straws for awhile since his last swallow study showed he only had penetrations when he took big gulps. We are to watch for signs of aspirations, keep him on the controlled drinks via tiny straw, and when he's doing fine on thins with the straw we can slowly start a transition to thicker straws and open cups.
Showing posts with label ThickIt. Show all posts
Showing posts with label ThickIt. Show all posts
Friday, August 18, 2017
Monday, July 31, 2017
Another GI visit
W had his checkup with GI a few days ago. It was a pretty good appointment--he continues to grow, albeit very slowly. Dr A is pleased, though, because it IS growth and he's sticking to his "new" curve. He's four point something percent on the growth charts and that percentile creeps up slowly so he periodically jumps up to the next curve.
He saw a nutritionist the other day but not his normal nutritionist. She wanted me to put him on a low fat diet. Said if we were really worried about calories, I could stir vegetable oil into skim milk. Told me to push whole grains on him, particularly whole wheat bread. His neurologist wants him to avoid breads and some other grains because they can trigger migraines and he just started treatment for migraines--the nutritionist said she'd never heard that and he needs more grains. I must admit that the nutritionist annoyed me :p GI advised that I not listen to her because her advice was contrary to what GI and W's regular nutritionist want and goes against what we are already doing that has proven successful. I was already planning on ignoring her since much of her advice was outdated but GI was also adamant that we ignore her--keep the whole milk and butter, avoid migraine triggers, and keep that boy growing :p
We've scheduled his next swallow study for August 10th. We are cautiously optimistic that his swallowing has improved due to his habit of stealing unthickened drinks and hiding while he drinks them--while we try to prevent that, it happens and he's been doing ok. No infections, no major choking/coughing spells unless he spots me coming and tries to chug it. Dr A has relaxed so much about his getting some unthickened liquids (he's still nursing, steals drinks, etc) because he's never ever had any type of respiratory event because of it. We are really really lucky because I know lots of kiddos (and adults) who aspirate have to deal with aspiration pneumonia and tons of respiratory issues and we've managed to avoid all of that. Perhaps because his aspirations seems to be a muscle coordination issue so it doesn't happen often? Even on his swallow studies, he has lots of swallows that are just fine and then one will penetrate, sometimes shallowly, sometime deep. I just hope its better because he HATES the thickener. Hates it so much :p
He saw a nutritionist the other day but not his normal nutritionist. She wanted me to put him on a low fat diet. Said if we were really worried about calories, I could stir vegetable oil into skim milk. Told me to push whole grains on him, particularly whole wheat bread. His neurologist wants him to avoid breads and some other grains because they can trigger migraines and he just started treatment for migraines--the nutritionist said she'd never heard that and he needs more grains. I must admit that the nutritionist annoyed me :p GI advised that I not listen to her because her advice was contrary to what GI and W's regular nutritionist want and goes against what we are already doing that has proven successful. I was already planning on ignoring her since much of her advice was outdated but GI was also adamant that we ignore her--keep the whole milk and butter, avoid migraine triggers, and keep that boy growing :p
We've scheduled his next swallow study for August 10th. We are cautiously optimistic that his swallowing has improved due to his habit of stealing unthickened drinks and hiding while he drinks them--while we try to prevent that, it happens and he's been doing ok. No infections, no major choking/coughing spells unless he spots me coming and tries to chug it. Dr A has relaxed so much about his getting some unthickened liquids (he's still nursing, steals drinks, etc) because he's never ever had any type of respiratory event because of it. We are really really lucky because I know lots of kiddos (and adults) who aspirate have to deal with aspiration pneumonia and tons of respiratory issues and we've managed to avoid all of that. Perhaps because his aspirations seems to be a muscle coordination issue so it doesn't happen often? Even on his swallow studies, he has lots of swallows that are just fine and then one will penetrate, sometimes shallowly, sometime deep. I just hope its better because he HATES the thickener. Hates it so much :p
Friday, March 31, 2017
Swallow Study
Earlier this week W had his swallow study. When I scheduled it I didn't realize it was a no school day so the whole crew came with us! We couldn't find a parking spot at the Children's Hospital so we ended up parking the next hospital over and walking. It wasn't too bad outside so they enjoyed the walk.
W was absolutely fine until we got to the room and he saw the tiny hospital gown--perhaps he had flashbacks to last week's ear tube surgery? The gown was just to slip over his clothes so he didn't dribble barium on his clothes but he didn't care--that thing was NOT going on him. A nurse helped me get Flailing Baby into the chair and strapped in and we draped the gown over him. He finally calmed down when he realized they were getting him a drink and he was fine after that. Unfortunately, he failed the swallow study :\ He had a penetration all the way to his vocal cords very quickly on nectar liquids (his current level of thickening) so we didn't even get to try thins *sigh*. The speech therapist conducting the swallow study said to keep him on nectar until we hear from GI.
So when GI called, they said that when he took small swallows, he seemed to do fine on the video, that penetration was a big gulp so they want him to use a sippy cup or straw cup with a valve to limit how much liquid comes out at once. Unfortunately, we have both and he will not drink out of either. He's stubborn, too--when he decides he's not going to, he will just not drink for days. So they recommended we got back to using the very thin straws he used to drink out of instead of the bigger ones he was finally agreeing to use :p We will wait a few months and then do another swallow study and see if he's made any progress but she doesn't feel another round of NMES will be helpful since this last round didn't make much difference for him. So we wait and continue to thicken.
W was absolutely fine until we got to the room and he saw the tiny hospital gown--perhaps he had flashbacks to last week's ear tube surgery? The gown was just to slip over his clothes so he didn't dribble barium on his clothes but he didn't care--that thing was NOT going on him. A nurse helped me get Flailing Baby into the chair and strapped in and we draped the gown over him. He finally calmed down when he realized they were getting him a drink and he was fine after that. Unfortunately, he failed the swallow study :\ He had a penetration all the way to his vocal cords very quickly on nectar liquids (his current level of thickening) so we didn't even get to try thins *sigh*. The speech therapist conducting the swallow study said to keep him on nectar until we hear from GI.
So when GI called, they said that when he took small swallows, he seemed to do fine on the video, that penetration was a big gulp so they want him to use a sippy cup or straw cup with a valve to limit how much liquid comes out at once. Unfortunately, we have both and he will not drink out of either. He's stubborn, too--when he decides he's not going to, he will just not drink for days. So they recommended we got back to using the very thin straws he used to drink out of instead of the bigger ones he was finally agreeing to use :p We will wait a few months and then do another swallow study and see if he's made any progress but she doesn't feel another round of NMES will be helpful since this last round didn't make much difference for him. So we wait and continue to thicken.
Tuesday, March 7, 2017
Baby W has opinions!
Baby W's recent language burst means he is also able to express his opinions on things :) Sometimes those opinions are contradictory but they are still his!
We had salmon tonight, first time for Baby W. First bite he told me was "yuh" (yuck) but he kept chewing. Second bite was "hmm" and by bite number five it was "moe" (more). He will keep trying things he doesn't like to see if he changes his mind--the only things he will absolutely not eat have to do with texture, not the food itself since he will usually eat those foods in a different form. Makes feeding him easier since if he doesn't like it, he will eat it anyway because he's determined that he'll like it!
He's also learned how to demand what drink he wants. He told me tonight he wanted "joo!" (juice) and if he can snag someone's unthickened water he will hug it close and declare "wums!" (his version of his name is Wum). This boy LOVES water but he won't drink it with the ThickIt in it (can't blame him there) so his main drinks are watered down juice and milk (sometimes with a tiny bit of chocolate powder because he won't always tolerate plain milk with the ThickIt). He wants so much to be like his big sister and get a straw cup with lovely plain water to carry around and sip from.
We had salmon tonight, first time for Baby W. First bite he told me was "yuh" (yuck) but he kept chewing. Second bite was "hmm" and by bite number five it was "moe" (more). He will keep trying things he doesn't like to see if he changes his mind--the only things he will absolutely not eat have to do with texture, not the food itself since he will usually eat those foods in a different form. Makes feeding him easier since if he doesn't like it, he will eat it anyway because he's determined that he'll like it!
He's also learned how to demand what drink he wants. He told me tonight he wanted "joo!" (juice) and if he can snag someone's unthickened water he will hug it close and declare "wums!" (his version of his name is Wum). This boy LOVES water but he won't drink it with the ThickIt in it (can't blame him there) so his main drinks are watered down juice and milk (sometimes with a tiny bit of chocolate powder because he won't always tolerate plain milk with the ThickIt). He wants so much to be like his big sister and get a straw cup with lovely plain water to carry around and sip from.
Wednesday, March 1, 2017
Finally got the call
A few weeks ago, before we were even done with feeding therapy, one of the therapists submitted the request to get the swallow study scheduled. She knew we were nearly finished with our prescribed number of sessions and wanted to get the ball running. She and her colleague would periodically ask if I'd gotten the call to schedule but I never did. Feeding therapy ended, still no call. Finally, I called them last week to see what the hold up was. They never issued an order for the swallow study so the clinic didn't know they needed to schedule one *sigh*
The GI was out for the week so I had to wait until this week for her to return and decide whether or not to order a swallow study. Got the call finally but now all the spots are filled so March 27th is the date :\ I know the therapists were hoping for soon after therapy ending (hence why they sent over their request for the GI to write an order so early) so if he's ready he can finally come off the thickeners.
Ah, well, at least he's used to the thickeners. Even if he is constantly trying to snitch unthickened drinks :P
The GI was out for the week so I had to wait until this week for her to return and decide whether or not to order a swallow study. Got the call finally but now all the spots are filled so March 27th is the date :\ I know the therapists were hoping for soon after therapy ending (hence why they sent over their request for the GI to write an order so early) so if he's ready he can finally come off the thickeners.
Ah, well, at least he's used to the thickeners. Even if he is constantly trying to snitch unthickened drinks :P
Friday, February 24, 2017
More Duck and Kid Adventures!
Compared to the last few days of Duck and Kid Adventures, today was boring! Duck did what he does everyday--be on the road. The Kid Adventures Army Duck helped with groceries ;)
Duck traveled from Nebraska to Missouri today. Only one picture, though, from a rest stop about 35 miles from Kansas City.
Here at home, we had back to back to back appointments, a trip to the medical supply store for more thickener and then loading up on supplies for the upcoming weekend before the storm hits (boo! snow!).
Duck traveled from Nebraska to Missouri today. Only one picture, though, from a rest stop about 35 miles from Kansas City.
Here at home, we had back to back to back appointments, a trip to the medical supply store for more thickener and then loading up on supplies for the upcoming weekend before the storm hits (boo! snow!).
Thursday, March 31, 2016
Well, Baby W still is not happy about this bottle thing but he is very slowly adjusting to it. We got a script for ThickIt and he tolerates that better than the cereal so he gives me less fight but still only agrees to about 6-8 ounces a day so far. Better than before and slowly working its way up, I guess? He still nurses more than anything but I figure every ounce by thickened bottle is one less ounce he's at risk for getting in his lungs :p I think he might eventually take all his daytime ounces by bottle but I very much doubt he'll give up morning/night nursing. Those are the two I stopped even trying to do by bottle because he reacted like Iz used to when we tried to up her calories when she was in heart failure.
We are starting to see signs of spring! The kids' dad took them all to get rain boots so they could splash in the mud and puddles and stuff and Iz especially is the happiest kid around. That girl loves mud.
We are starting to see signs of spring! The kids' dad took them all to get rain boots so they could splash in the mud and puddles and stuff and Iz especially is the happiest kid around. That girl loves mud.
Subscribe to:
Posts (Atom)