We've just finished week 3 on the diet and we're all doing pretty well. We're weighing & measuring and writing everything down. With 3 meals & 2 snacks a day, we're using a lot of dishes & a ton of zip lock bags. Thankfully my friend Sara & Debbie each came over on a weekend and helped me get the meals ready for the next week. It was a major help.(BTW, do you know you can buy pasteurized eggs in the shell? I needed them for Ben's eggnog. How do they do that?)It was so nice to be able to grab something quick when Ben was starving or if we were late out the door. I think I'm going to have regular keto cooking sessions with my friends. I'll just have to bribe them with some non-keto food.
Ben was really hungry the first week. He kept asking for more food (even begging for carrots!) and he'd cry when his snack was done b/c he wanted more. One of the worst moments was at church on Sunday when he was so low energy that he actually laid down on the church playground. He was fine, he just didn't have any energy left. I felt so bad for Ben & so guilty. I wanted to call the dietitian and ask for more food but then in true Ben fashion, we had a role reversal on week 2. He didn't want to eat all of his foods and some nights he didn't eat any dinner at all. We didn't make it through one day without Ben refusing some food or a meal. The problem with the Keto diet is that you must eat all the food in each meal. So,I am definitely not going to ask for more food now b/c that'll just be more food to try to get Ben to eat. The keto literature says that the higher you can keep the ketones and the longer you can keep them high, the better chance you have of seizure reduction. And less calories means higher ketones. So unless Ben starts having major energy issues, I think we'll just wait & see.
The good news is that we've been able to keep Ben's ketones Large-XL (the highest on the scale)since he started the diet. And best of all Ben is still seizure free.YEAH! It's been almost a month since his last seizure which is the longest break he's had since last Sept. His Drs are going to let us start weaning off the meds so we are very excited. It's been amazing to see the little improvements in Ben. He's more focused,steadier on his feet and has new words everyday. Yesterday he bit Grace (She bit him first!) and he practically put himself in timeout! It's really going to be incredible seeing Ben come off his meds. We haven't know him without major medications in his system since he was nine months old. Even then he was seizing so frequently and had such developmental delay, we didn't get a good sense of who he was. I can't wait to get to know the real Ben.
e martë, 31 korrik 2007
e shtunë, 21 korrik 2007
One week down, only 103 left to go.......
We've finally ended our first week on the keto diet. Like most of our family life living with an epileptic, it was a roller coaster ride. We started out on the weekend doing really well. Ben was eating well & we were thrilled. Hot dogs & carrots were a big hit. He didn't seem to mind all of the fat & the butter was going down & staying down. Our first rough day came on Tues.We had finished the last of the ketogenic eggnog so I gave Ben a small bit of scrambled egg for breakfast. He threw a fit, wouldn't stop whining & absolutely refused to eat it. We were late for therapy that morning, so I pitched the breakfast & out the door we went. Ben had nothing but butter & cream to eat. He's in camp this week from 10-12pm so I took a snack. Battle #2 came with the snack. I baked a ketogenic version of peanut butter muffins the night before & brought some with me. Ben took one bite & refused to eat any more. Luckily I brought another snack (peanut butter balls) with me. He loves them & ate it without complaint. I just ignore the fact that he had taken a bite of the other snack. Back at home for lunch I tried the hamburger meal. Ben seemed to be getting tired of the hot dogs (he started whining about the last few bites) so I thought we'd try hamburgers. Well that didn't go over very well. Unfortunately the rules of the diet are such that you can't start one meal, eat part of it & switch to something else. The whole meal is balanced & every part of the meal must be eaten in it's entirety to maintain the keto ratio of 4:1 (4 parts fat to 1 part protein & carb combined). Ben ate the salad & carrots & then refused the hamburger. He would let me put it in his mouth but then refused to swallow it. It was amazing in that he never tried to spit anything out. I think he knows that's not ok. He just wouldn't swallow anything. He sat there with his cheeks stuffed with hamburger & drool coming out the sides of his mouth. If it weren't so stressful, it would've been funny (even if it was a little disgusting). After 45mins I finally managed to get him to choke everything down.
Wens & Thursday passed with relative ease. And then again on Friday Ben had some issues with the meals I'm serving. Since scrambled eggs didn't work so well, and he really likes the mayo, I tried the yolk of a hard boiled egg with some mayo, again another "food fight". This time Grace joined in b/c she was at the table while Ben was eating & she was honked off b/c she wanted his egg plus string cheese which we were out of. So both were pitching a fit, one refusing food the other wanting more food. Breakfast lasted so long we totally missed morning snack & were in danger of running right into lunch (Ironically I still hadn't had breakfast myself). When dinner rolled around, I thought we'd tried diced ham, similar to hot dogs right? Well, Ben didn't think so, so we had another stand off. Luckily Ted came home by then & took over the battle. I just can't wait till we try chicken & mashed turnips next week!
I'm trying not to push Ben too much with diet changes but at the same time, we've learned from his feeding therapy that if I let him eat the same food over & over, he'll eventually drop that food & not ever eat it again. So I'm trying to preserve the hot dog (feeble pun intended). He has been eating some of the foods easily & it's really nice to see. Jello with whipped cream, keto yogurt & shredded iceberg lettuce with mayo are all new favorites. We never thought we'd see him eat some of this stuff. So we're grateful for the food he is eating.
Ben is definitely feeling hungry most of the time, even when he eats his full meal. The portions are very small & he's only been allotted 800cal/day. In the past few days he's suddenly become very aware of what everyone else is having to eat & he's taken to surfing the kitchen counter. Luckily we're been very good about keeping it clear of food. I think we may soon be putting a childproof lock on the refrig. Wens am Ben got up at 6am, came upstairs and asked for "breakfast". We we're impressed by the use of his new word. Hunger must be a very strong motivating factor. Sometimes I feel guilty depriving him, but I try to keep in mind what a gift it will be if he can come off medication & can live a life without seizures
The dietitian has told us that his hunger will subside after a week or 2 on the diet. He'll never feel full but he won't feel hungry either. Anyone who's dieted can relate. You eat that weight watchers dinner & think, "well that was good, but now what". In fact Ben has taken to whining little bit at the end of his meals I think b/c he's done and he knows there's no more food till the next snack. The good news is, with 3 meals & 2 snacks a day, during the day,food is never more that 2-3 hrs away.
I do plan on asking the dietitian for an increase in calories, especially before Ben goes back to pre-school. I think he'll need the extra energy.
The best news overall is that we've kept Ben's ketones in the Large to X-large range & he's remained seizure free since the first day of his diet (7/9). In fact his last "big seizure was on 7/2. The really interesting thing is that not only has Ben been seizure free since starting the diet but there is something about him that seems more solid & more focused. I can't quite explain it but others have noticed it as well. If he continues to remain seizure free, we'll start weaning one his medications in a another week. A very good thing and a major motivation.
Wens & Thursday passed with relative ease. And then again on Friday Ben had some issues with the meals I'm serving. Since scrambled eggs didn't work so well, and he really likes the mayo, I tried the yolk of a hard boiled egg with some mayo, again another "food fight". This time Grace joined in b/c she was at the table while Ben was eating & she was honked off b/c she wanted his egg plus string cheese which we were out of. So both were pitching a fit, one refusing food the other wanting more food. Breakfast lasted so long we totally missed morning snack & were in danger of running right into lunch (Ironically I still hadn't had breakfast myself). When dinner rolled around, I thought we'd tried diced ham, similar to hot dogs right? Well, Ben didn't think so, so we had another stand off. Luckily Ted came home by then & took over the battle. I just can't wait till we try chicken & mashed turnips next week!
I'm trying not to push Ben too much with diet changes but at the same time, we've learned from his feeding therapy that if I let him eat the same food over & over, he'll eventually drop that food & not ever eat it again. So I'm trying to preserve the hot dog (feeble pun intended). He has been eating some of the foods easily & it's really nice to see. Jello with whipped cream, keto yogurt & shredded iceberg lettuce with mayo are all new favorites. We never thought we'd see him eat some of this stuff. So we're grateful for the food he is eating.
Ben is definitely feeling hungry most of the time, even when he eats his full meal. The portions are very small & he's only been allotted 800cal/day. In the past few days he's suddenly become very aware of what everyone else is having to eat & he's taken to surfing the kitchen counter. Luckily we're been very good about keeping it clear of food. I think we may soon be putting a childproof lock on the refrig. Wens am Ben got up at 6am, came upstairs and asked for "breakfast". We we're impressed by the use of his new word. Hunger must be a very strong motivating factor. Sometimes I feel guilty depriving him, but I try to keep in mind what a gift it will be if he can come off medication & can live a life without seizures
The dietitian has told us that his hunger will subside after a week or 2 on the diet. He'll never feel full but he won't feel hungry either. Anyone who's dieted can relate. You eat that weight watchers dinner & think, "well that was good, but now what". In fact Ben has taken to whining little bit at the end of his meals I think b/c he's done and he knows there's no more food till the next snack. The good news is, with 3 meals & 2 snacks a day, during the day,food is never more that 2-3 hrs away.
I do plan on asking the dietitian for an increase in calories, especially before Ben goes back to pre-school. I think he'll need the extra energy.
The best news overall is that we've kept Ben's ketones in the Large to X-large range & he's remained seizure free since the first day of his diet (7/9). In fact his last "big seizure was on 7/2. The really interesting thing is that not only has Ben been seizure free since starting the diet but there is something about him that seems more solid & more focused. I can't quite explain it but others have noticed it as well. If he continues to remain seizure free, we'll start weaning one his medications in a another week. A very good thing and a major motivation.
e premte, 13 korrik 2007
There's no place like home...There's no place like home...
We finally made it home. YEAH! We got into town about 7:30 am this morning & after picking up some keto friendly groceries for Ben, we got to the house by 8:30. It was so wonderful to get back home. We've been so lucky to have Carrie & her mom staying at the house. It was such a relief to know that someone was at the house & that we didn't need to worry about things while we were gone. Carrie & her mom really out did themselves and had the whole house spic & span (way cleaner than I left it for them) and they left flowers & gifts for each of us. What a lovely homecoming. And I was already feeling a little guilty about coming home so unexpected & so early. We hadn't planned on coming in till dinner time on Friday but it's been up & down since Ben's first meal on Wens night so we just wanted to get home. After we picked up Grace at my parents place in Deep creek, we just took a quick nap & then hit the road by midnight & drove straight through the night
Ben's had intermittent vomiting & flushing of his face & limbs. He is also at times fairly irritable & is not drinking enough between meals. So of course he's still really wiped out. He likes the ketogenic eggnog but the heavy fat in the diet really upsets his stomach. Since wens night Ben has only been able to eat 2 meals & keep it down. The folks at JHU told us that all of this is to be expected. It's really hard for the body to switch from glucose metabolism to fat. They promise that he'll get used to it within the next week. Ben has been asking for his favorite foods (all not allowed on the diet) and when we tell him no, he refuses any other food. The JHU folks tell us that this too will change over the next week, he's just testing the ground rules. We'll see what happens. After only a few days on the diet, Ben already seems more calm & focused & I know he's been using more novel words & more sentences.
I'm just determined that we'll quit this diet only b/c it's not working for Ben, not b/c he won't eat it. Especaiily now that we know it's worked so well for other kids with his type of epilepsy.
I spent 3 hrs this evening making keto snacks, keto yogurt, and freezing butter. None of the recipes were difficult just a little time consuming. With a little practice I hope all the weighing & measuring will become second nature.
Thanks again for all your support, it means alot. Keep in touch.
-Meg
Ben's had intermittent vomiting & flushing of his face & limbs. He is also at times fairly irritable & is not drinking enough between meals. So of course he's still really wiped out. He likes the ketogenic eggnog but the heavy fat in the diet really upsets his stomach. Since wens night Ben has only been able to eat 2 meals & keep it down. The folks at JHU told us that all of this is to be expected. It's really hard for the body to switch from glucose metabolism to fat. They promise that he'll get used to it within the next week. Ben has been asking for his favorite foods (all not allowed on the diet) and when we tell him no, he refuses any other food. The JHU folks tell us that this too will change over the next week, he's just testing the ground rules. We'll see what happens. After only a few days on the diet, Ben already seems more calm & focused & I know he's been using more novel words & more sentences.
I'm just determined that we'll quit this diet only b/c it's not working for Ben, not b/c he won't eat it. Especaiily now that we know it's worked so well for other kids with his type of epilepsy.
I spent 3 hrs this evening making keto snacks, keto yogurt, and freezing butter. None of the recipes were difficult just a little time consuming. With a little practice I hope all the weighing & measuring will become second nature.
Thanks again for all your support, it means alot. Keep in touch.
-Meg
e martë, 10 korrik 2007
End of Day Two
We've made it thorough day two. Ben is doing really well but remains very tired. He has now had a total of 4 very small keto eggnogs and a small amount of no cal, no carb liquids. That's been it since Sunday night. He has +4 (large amt) of ketones in his urine and his blood sugar has been hanging around in the 70's. Which, believe it or not is where we want him. We are basically rewiring him to use fat / ketones as an energy source instead of carbs/sugar So you can see why he's wiped out.
We had a bit of a shock. As Ted mentioned earlier, the Drs here think Ben has Doose syndrome (see link in previous email). We came here for the diet & never expected to get a diagnosis too. It's overwhelming especially since we never had one in all these years. Equally impressive is that both admitting Dr's mentioned it as soon as they saw him & his chart. (this occurred at 2 different places in the hospital & 2 different times of the day!). Amazing considering Ben has been followed by neurologists in Raleigh & at Duke for 4 yrs & no one ever mentioned Doose. It's a rare form of epilepsy but the good news is that the ketogenic diet is highly effective for treatment. In fact success on the keto diet can be used as a differential diagnosis.
Everyone here has been wonderful and we're so lucky to have my sister Sue with us to help out. She stays with Ben when we go to classes. She has been a HUGE help. We're in a semi-private room, which I was dreading but our roommates are another couple just like us. The mom is a nurse, dad is a hands on dad(in fact he stays every night) & they have a 4yr old son who was diagnosed with Doose last year. What could be better. They're great & we're learning a lot from each other. Of course as things happen, they were transferred to another room on another floor to make room for another little boy who came in this morning. No one was happy about it, including the Drs . The new folks are great, but they have a little boy who is eating, and he's on a no fat diet, without calorie restrictions. So just the opposite of us & not a great fit. They are only here for 24 hrs & will go home tomorrow afternoon. Then we'll get our old buddies back.
When we're at home, I often feel isolated b/c of Ben's condition. Almost all the parents I know have healthy, "on targetl" kids. They don't live with the daily impact of frequent Dr's visits, multiple therapy sessions & lots & lots of meds. And the parents that I do know who have special needs children, are not dealing with epilepsy. So their issues are not the same. Coming here to meet 3 other families who have had almost the exact same journey, the same struggles & same concerns, has been very, very therapeutic. I almost feel as if I've joined my first parenting club. My first "mommy's morning out", where I really feel connected with the others in the group. Another benefit from our hospital stay, is that no matter how bad I feel for Ben, or how sorry I feel for anything Ted & Grace & I have to deal with as a family, every time we come into a hospital, I see folks who are dealing with so much more. You'd think you'd be emotionally drained and exhausted, and we are tired, but surprisingly we also realize how lucky & blessed we are.
Tomorrow, more classes & keto eggnog & by dinner time Ben will finally get solid food. YEAH! It's a small amount of food but a very big deal.
Please keep us in your thoughts & prayers,
We miss you all and we hope you & yours are doing well.
-Meg
We had a bit of a shock. As Ted mentioned earlier, the Drs here think Ben has Doose syndrome (see link in previous email). We came here for the diet & never expected to get a diagnosis too. It's overwhelming especially since we never had one in all these years. Equally impressive is that both admitting Dr's mentioned it as soon as they saw him & his chart. (this occurred at 2 different places in the hospital & 2 different times of the day!). Amazing considering Ben has been followed by neurologists in Raleigh & at Duke for 4 yrs & no one ever mentioned Doose. It's a rare form of epilepsy but the good news is that the ketogenic diet is highly effective for treatment. In fact success on the keto diet can be used as a differential diagnosis.
Everyone here has been wonderful and we're so lucky to have my sister Sue with us to help out. She stays with Ben when we go to classes. She has been a HUGE help. We're in a semi-private room, which I was dreading but our roommates are another couple just like us. The mom is a nurse, dad is a hands on dad(in fact he stays every night) & they have a 4yr old son who was diagnosed with Doose last year. What could be better. They're great & we're learning a lot from each other. Of course as things happen, they were transferred to another room on another floor to make room for another little boy who came in this morning. No one was happy about it, including the Drs . The new folks are great, but they have a little boy who is eating, and he's on a no fat diet, without calorie restrictions. So just the opposite of us & not a great fit. They are only here for 24 hrs & will go home tomorrow afternoon. Then we'll get our old buddies back.
When we're at home, I often feel isolated b/c of Ben's condition. Almost all the parents I know have healthy, "on targetl" kids. They don't live with the daily impact of frequent Dr's visits, multiple therapy sessions & lots & lots of meds. And the parents that I do know who have special needs children, are not dealing with epilepsy. So their issues are not the same. Coming here to meet 3 other families who have had almost the exact same journey, the same struggles & same concerns, has been very, very therapeutic. I almost feel as if I've joined my first parenting club. My first "mommy's morning out", where I really feel connected with the others in the group. Another benefit from our hospital stay, is that no matter how bad I feel for Ben, or how sorry I feel for anything Ted & Grace & I have to deal with as a family, every time we come into a hospital, I see folks who are dealing with so much more. You'd think you'd be emotionally drained and exhausted, and we are tired, but surprisingly we also realize how lucky & blessed we are.
Tomorrow, more classes & keto eggnog & by dinner time Ben will finally get solid food. YEAH! It's a small amount of food but a very big deal.
Please keep us in your thoughts & prayers,
We miss you all and we hope you & yours are doing well.
-Meg
e hënë, 9 korrik 2007
End of Day one
Day one has been joyfully uneventfull. Ben's 24 hour fast was not much of a problem, and he ate the egg and oil milkshake around dinner time without too much fuss -- though with "assistance" from Meg. Classes start tomorrow morning. I'm sure Meg will do fine, but I expect to struggle a bit. I'll be the one saying "explain that to me as if I'm a computer geek." :-)
The conversations with the staff have gone really well. It appears they are all very accessible via phone and email, which will come in handy over the next few months.
There is some thought that Ben's epilepsy is Myoclonic-Astatic Epilepsy, or "Droose syndrome" (http://www.doosesyndrome.com/index.html), but that's a preliminary thought. One of the other patients is a 3.5 year old boy with Droose, and there are many similarities. The good news is that this type of epilepsy responds well to the Ketogenic diet. More on that as we learn more.
That's all from me. Till next time, Shalom
The conversations with the staff have gone really well. It appears they are all very accessible via phone and email, which will come in handy over the next few months.
There is some thought that Ben's epilepsy is Myoclonic-Astatic Epilepsy, or "Droose syndrome" (http://www.doosesyndrome.com/index.html), but that's a preliminary thought. One of the other patients is a 3.5 year old boy with Droose, and there are many similarities. The good news is that this type of epilepsy responds well to the Ketogenic diet. More on that as we learn more.
That's all from me. Till next time, Shalom
e diel, 8 korrik 2007
We're here.....finally
We're now settled into the Baltimore Radisson. It's a beautiful hotel just a couple of blocks from the Inner Harbor & a few minutes from JHU. Everyone has been really great so far and they're very accommodating to JHU patients. We've already seen a few patients in the lobby & cafe. We're in a little bit of sticker shock (no public parking only valet & we tipped 3 times before we even got to the room) But they do offer deep discounted rates to JHU patients (our room reservation was made by the hospital) & we're staying on the Plaza Club floor which takes a pass key to get to it & we have complimentary morning breakfast & afternoon cocktails & appetizers. So I think JHU hooked us up. It would be really grand if we only didn't have that whole hospital thing to deal with!
Ben did really well on his trip down but he didn't eat anything all day except for graham crackers sticks. So, we took him to dinner downstairs @ 9:30pm. I'm sure it was later than the Dr's would like but I just wanted him to have something a little more substantial than crackers before his 2 day fast. His last "regular" meal was grilled cheese & fries. He really only ate a couple bites so I don't feel so guilty feeding him so late. He kept asking for crackers & Ted told him he could have them later on. He didn't tell him he may have to wait two years for them!
Knowing Ben, he'll remember & ask again in two years!
I really want to thank everyone who helped out on our vacation. My family really tried to make sure we all had a great time & I have to say it was a wonderful week. Every helped out so we got to do all the things we wanted to do & also chill out when we wanted to. Some of my family came to visit us,so we didn't have to get back in the car & drive to see everyone. My parent's next door neighbors, the Egans, were also really sweet & lent us the use of their townhouse so we had plenty of elbow room for the whole gang. It was really a great week together with everyone.
I'm still really grateful to my family for their help. My sister Ann took Grace home with her for the week. I miss her already but I know she's having a great time b/c her older cousin Emily dotes on her. My mom went with Ann to help her out since Ann recently had foot surgery (I can't believe she took Grace, she insisted it was no big thing. She now has 3 kids under the age of 11 @ her house & she has her foot in a splint!) My oldest sister Sue took time off to come with us. We have daily classes to learn about the diet and Sue will stay with Ben to keep him company. She's already been a huge help to me with packing, directions, & planning, etc. She's also really helped to keep me calm & add a little bit of fun to this trip. Ted & I will alternate staying with Ben overnight in the hospital. Whoever has "the night off" will get to do a little sight seeing with Sue. It'll be a big help to break up the day & decrease the stress.
I'll try to update the blog as often as possible. Please keep us in your prayers. We miss you & can't wait to get back home.
Love to all,Meg
Ben did really well on his trip down but he didn't eat anything all day except for graham crackers sticks. So, we took him to dinner downstairs @ 9:30pm. I'm sure it was later than the Dr's would like but I just wanted him to have something a little more substantial than crackers before his 2 day fast. His last "regular" meal was grilled cheese & fries. He really only ate a couple bites so I don't feel so guilty feeding him so late. He kept asking for crackers & Ted told him he could have them later on. He didn't tell him he may have to wait two years for them!
Knowing Ben, he'll remember & ask again in two years!
I really want to thank everyone who helped out on our vacation. My family really tried to make sure we all had a great time & I have to say it was a wonderful week. Every helped out so we got to do all the things we wanted to do & also chill out when we wanted to. Some of my family came to visit us,so we didn't have to get back in the car & drive to see everyone. My parent's next door neighbors, the Egans, were also really sweet & lent us the use of their townhouse so we had plenty of elbow room for the whole gang. It was really a great week together with everyone.
I'm still really grateful to my family for their help. My sister Ann took Grace home with her for the week. I miss her already but I know she's having a great time b/c her older cousin Emily dotes on her. My mom went with Ann to help her out since Ann recently had foot surgery (I can't believe she took Grace, she insisted it was no big thing. She now has 3 kids under the age of 11 @ her house & she has her foot in a splint!) My oldest sister Sue took time off to come with us. We have daily classes to learn about the diet and Sue will stay with Ben to keep him company. She's already been a huge help to me with packing, directions, & planning, etc. She's also really helped to keep me calm & add a little bit of fun to this trip. Ted & I will alternate staying with Ben overnight in the hospital. Whoever has "the night off" will get to do a little sight seeing with Sue. It'll be a big help to break up the day & decrease the stress.
I'll try to update the blog as often as possible. Please keep us in your prayers. We miss you & can't wait to get back home.
Love to all,Meg
e mërkurë, 4 korrik 2007
More please.....
First of all, happy 4th of July to everyone. We hope you are all healthy & happy and enjoying the holiday. The McDaniel clan arrived safely at Deep Creek, Md on Saturday. We've had a wonderful time so far. The weather has been sunny and cool (high 70's) and we're loving it. We've done a lot of hiking at the local state parks (Swallow Falls). My Aunt Dee, Cousin Richie & Richie's son Max came down for a visit & we went exploring & swimming at the local nature center. Actually, swimming isn't the word. Ben & Grace fell in while walking along the waters edge. We didn't have extra clothes so we dressed them in their jackets. (see pics on the link at the left). We've also been reading & napping a lot too which is a rare teat.
Our family is coming in this afternoon to have a BBQ for the fourth & watch the fireworks over the lake. It's always a beautiful site to see them reflect over the water. Tomorrow we're renting a pontoon boat (or a "party boat" as the locals call it) to go out on the Lake. Lots of jumping off the back of the boat & floating. A great way to spend a day in July
The kids have been having a lot of fun. Ben is sleeping on a sleeping bag in the same room with Grace & they really enjoy it. Ted & I often hear them talking to each other but they don't come out of the room & eventually fall asleep without us having to intervene. Ben's favorite thing about sleeping on the floor is that in the morning he can come over and wake up mom & dad, usually between 6-7am! We get to nap but not to sleep in.
Ben did have a seizure on Monday but it resolved with just one dose of Diastat. He was still off the rest of the evening but was his usually self by the next morning. The most amazing thing is that he's eating everything in site. Not only quantity but variety. Watermelon, cheese, hot dogs, carrots, blueberries. He's eating so much he's actually asking for more when we're putting him to bed. This is amazing for a kid who spent a year going to feeding therapy once a week. I really enjoying watching him eat. Sometimes when he thinks it's really good, he hums as he eats! I think he got that from Grace. My big hope is that he will stay as open minded to the new & different food options on the diet and that we'll find something that he likes just as much. But, for now we're just enjoying the moment. I think tonight after fireworks, we'll get some ice cream from the local creamery, YUM!
Our family is coming in this afternoon to have a BBQ for the fourth & watch the fireworks over the lake. It's always a beautiful site to see them reflect over the water. Tomorrow we're renting a pontoon boat (or a "party boat" as the locals call it) to go out on the Lake. Lots of jumping off the back of the boat & floating. A great way to spend a day in July
The kids have been having a lot of fun. Ben is sleeping on a sleeping bag in the same room with Grace & they really enjoy it. Ted & I often hear them talking to each other but they don't come out of the room & eventually fall asleep without us having to intervene. Ben's favorite thing about sleeping on the floor is that in the morning he can come over and wake up mom & dad, usually between 6-7am! We get to nap but not to sleep in.
Ben did have a seizure on Monday but it resolved with just one dose of Diastat. He was still off the rest of the evening but was his usually self by the next morning. The most amazing thing is that he's eating everything in site. Not only quantity but variety. Watermelon, cheese, hot dogs, carrots, blueberries. He's eating so much he's actually asking for more when we're putting him to bed. This is amazing for a kid who spent a year going to feeding therapy once a week. I really enjoying watching him eat. Sometimes when he thinks it's really good, he hums as he eats! I think he got that from Grace. My big hope is that he will stay as open minded to the new & different food options on the diet and that we'll find something that he likes just as much. But, for now we're just enjoying the moment. I think tonight after fireworks, we'll get some ice cream from the local creamery, YUM!
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