I can't believe I haven't updated since July! This has been our summer to be outside and I just haven't been very good about letting you all know what is going on. Anyway, here is our update:
Daniel - he is doing good. We have had a few minor setbacks with sickness but overall he is doing well. We are still at 3 meals per day. We need at least 1500 calories per day so what he doesn't get eating orally, we make up at night on the pump. Usually about 4 hours per night. His weight is still not going up like the doctors want but he is getting taller and that makes a huge difference in weight gain. We went to the pediatrician last week and Daniel has grown 5 inches in height from last year to this year (wow)! This would account for some of the non-weight gain. We are constantly looking for ways to increase his calories and it is very time consuming for me. We are due to go back to see the doc in Cincinnati in November so I'll wait to see what they have to say. I'm hoping that they will be happy with his progress but not sure because I know they want him to be gaining more weight. He is a handful. The words are coming now. It is still hard to understand him sometimes but he is trying and it is getting better and better.
Abigale - doing wonderful! She is getting so tall and is growing up so fast. I'm not sure all of you know but we decided not to send her to kindergarten this year. I am homeschooling her instead. It was a very hard decision for us. We really wanted her to go to school but we had her in preschool for 2 1/2 months and she brought home sickness 3 times and Daniel had to be in the hospital for 2 of those. With the "swine flu" scare we just couldn't chance it. We decided to homeschool and try to keep Daniel healthy. We will re-evaluate next year to see if she goes to school or if we continue to homeschool. So now, I am mommy, nurse, maid, teacher, insurance agent and wife. My business card when I go back to try to find a job is going to be full of titles (hahahahaha). She is doing very well with homeschool and I am enjoying it. I can't say that I would want to do it forever but for now it is working out just fine.
Eric and I are doing good. We are both busy and continue to take it 1 day at a time. Not sure that this is what I expected when I signed up to be wife and mommy but I am much wiser now and so is Eric. We just take what comes and continue on.
I hope all of you are doing well. We miss those we haven't seen in a while and would love to hear from you all. Feel free to e-mail me at mommytoabi@hotmail.com to let me know how you are doing and what is happening in your life.
Well, I gotta go. Take care and know that we think of everyone often!
-Angela-
Wednesday, September 9, 2009
Wednesday, July 22, 2009
Long overdue update....
Well, so much for updating more often! Summer has just been busy and to tell you the truth we were just trucking along and I didn't want to jinx anything. Here's what's been happening in the Heyne Household:
Daniel - he is doing well. We made it 25 days without the feeding pump but something happened and we aren't sure what. We don't know if he caught some type of stomach bug or if he wasn't tolerating all the food or what but it brought our no feeding pump to an end. We spent several hours in the ER but thankfully got to come home and he spent 2 days on pedialyte thru his button and then back onto oral eating. We started out slow with just 2 meals per day and the remainder on the pump and worked up to 3 meals. We started 4 meals (and no pump) on Monday of this week but it isn't working out too well so we need to back it down to just 3 for another week or so. He just hasn't been up to eating 4 meals at 10 oz per meal. Other than this minor setback, he is doing well. He loves loves loves being outside whenever we have free time to do so. He looks healthy just a little skinny! He is babbling more and more and we are able to get some of the words he is saying. Right now, we just continue to try to feed him as much as he will eat and see if we can get him back up to full oral feeds.
Abi - She is wonderful. As you know, we enrolled her in preschool and were contemplating sending her 3 days instead of 2. Well, Eric and I had a long discussion about preschool because I was very disappointed. When I interviewed the school they told me that the would be doing work on ABC's, numbers and so forth. Well, that just wasn't happening. Basically, they were playing outside all day when the weather was nice and if they had to be inside they were coloring pictures on the back of placemats that a restaurant that had gone out of business had given to the school. I wanted her to have fun but I also wanted her to be learning with the fun. I didn't want her coloring on a blank placemat everyday. So, we decided not to send her anymore. I just couldn't see paying the money for her to color. I've been working with her at home on her ABC's, math and writing and she is doing well. So, that's what is happening with her. She and her brother fight like cats and dogs (she's the dog is what she tells me) and I get tired of it but a "wise" friend told me --- it's just part of them growing up and part of you being a parent. I just want this stage to be over......I want them to get along!
Eric and I - we are great! Life is flying by and Daniel is doing so well that we just count our lucky stars. Yes, we want to get rid of the feeding pump and yes, we get frustrated but we just hang in there and keep doing what we do.
Well, I gotta go. Hopefully, I will be better at updating you all who read this in a more timely fashion next time.
-Angela-
Daniel - he is doing well. We made it 25 days without the feeding pump but something happened and we aren't sure what. We don't know if he caught some type of stomach bug or if he wasn't tolerating all the food or what but it brought our no feeding pump to an end. We spent several hours in the ER but thankfully got to come home and he spent 2 days on pedialyte thru his button and then back onto oral eating. We started out slow with just 2 meals per day and the remainder on the pump and worked up to 3 meals. We started 4 meals (and no pump) on Monday of this week but it isn't working out too well so we need to back it down to just 3 for another week or so. He just hasn't been up to eating 4 meals at 10 oz per meal. Other than this minor setback, he is doing well. He loves loves loves being outside whenever we have free time to do so. He looks healthy just a little skinny! He is babbling more and more and we are able to get some of the words he is saying. Right now, we just continue to try to feed him as much as he will eat and see if we can get him back up to full oral feeds.
Abi - She is wonderful. As you know, we enrolled her in preschool and were contemplating sending her 3 days instead of 2. Well, Eric and I had a long discussion about preschool because I was very disappointed. When I interviewed the school they told me that the would be doing work on ABC's, numbers and so forth. Well, that just wasn't happening. Basically, they were playing outside all day when the weather was nice and if they had to be inside they were coloring pictures on the back of placemats that a restaurant that had gone out of business had given to the school. I wanted her to have fun but I also wanted her to be learning with the fun. I didn't want her coloring on a blank placemat everyday. So, we decided not to send her anymore. I just couldn't see paying the money for her to color. I've been working with her at home on her ABC's, math and writing and she is doing well. So, that's what is happening with her. She and her brother fight like cats and dogs (she's the dog is what she tells me) and I get tired of it but a "wise" friend told me --- it's just part of them growing up and part of you being a parent. I just want this stage to be over......I want them to get along!
Eric and I - we are great! Life is flying by and Daniel is doing so well that we just count our lucky stars. Yes, we want to get rid of the feeding pump and yes, we get frustrated but we just hang in there and keep doing what we do.
Well, I gotta go. Hopefully, I will be better at updating you all who read this in a more timely fashion next time.
-Angela-
Thursday, May 28, 2009
What is happening....
I can't believe it has been over a month since I've updated. Time is just flying by in the Heyne household.
We took our trip to Louisville, KY for my insurance update. It was a great time. We visited the Louisville zoo with the kids which is an absolute wonderful zoo. If you ever get the chance, be sure to visit as it is one of the best. I took my 2 1/2 day class and while I hate taking these classes, it was one of the better ones I had taken. We took the kids to Chucky Cheese (how I hate that place) and to a place called Puzzles Fun Dome. The fun dome is filled with inflatable slides of all shapes and sizes. I think that Daniel ran off all the calories that we fed him that day. They were exhausted by the time we came home.
Daniel is doing well. We are still holding at 4 meals per day (every 3 hours) and I am working him back up to 10 oz meals. He has steadily improved and yesterday was the first day that he took 40.2 oz total for the day. Today he is going to beat that record. We will keep him at this for a while to make sure he's doing okay and then I'll try 5 meals a day. We need to let him adjust to this after being so sick. Daniel made his visit to Cincinnati to see the GI doc last week (his first visit since being home) and they are extremely impressed. He is doing so well that they don't need to see him for 6 months (yipeeeeeee)! The docs asked a lot of questions about what he is eating and they calculated everything and he is getting plenty of nutrition. We went the week before for labs and all his levels look really good so no worries there. We will just keep plugging along with the eating and try to come up with new things to feed him. I'm sure most of you know that everything we feed is pureed. I want to make sure you all understand that he is not eating typical 3-4 year old food. Once we get him acclimated to all this, we will work with someone to help him learn to chew. For now, he is doing wonderful.
Abi has started a preschool 2 days a week. She is still adjusting. This is all so new to her. Eric and I thought we needed to do this before she starts Kindergarten in August. We were having nightmares about just one day putting her on the bus and traumatizing her. She has never stayed with anyone other than her Grandparents so this is good for her. Eric thinks we need to up it to 3 days a week because she is having a hard time with goodbyes. The teacher says that while she cries when I drop her off and asks that I pick her up early (which I don't), she settles as soon as I leave and is good the rest of the day. We'll just wait and see. I don't really want to send her 3 days because I think she should be able to enjoy her last summer before school and to tell you the truth, I don't think an extra day is going to solve her crying when I leave. If you have a comment about this, leave me a message and let me know what you think (2 days or 3 will it matter?).
Eric and I are fine. I don't feel like I ever sit down. Between 4 feedings a day, getting Daniel's food ready, and all the other household duties, well it seems overwhelming sometimes. I just keep going like the energizer bunny I guess. I know that things are better than they used to be with Daniel's health and I should be grateful for that. However, sometimes I just feel the need to scream at all that needs to be done around here. But, I'm doing okay with everything and am just hoping that things continue on the right path and things even out. Eric is doing good too. He is working hard at work and is helping his parents out too. His dad has had some medical issues so Eric is helping with their mowing (5 acres - OMG) on top of our yard and is helping with whatever else they need. I guess you could say that we are both really busy. I think we speak to each other every couple of days (hahahaha)!
Well, I gotta go. I'll try to do better about updating all of this. Summer is here and we try to get outside as much as possible. Please know that we think of all of you often and hope that things are well in your household.
-Angela-
We took our trip to Louisville, KY for my insurance update. It was a great time. We visited the Louisville zoo with the kids which is an absolute wonderful zoo. If you ever get the chance, be sure to visit as it is one of the best. I took my 2 1/2 day class and while I hate taking these classes, it was one of the better ones I had taken. We took the kids to Chucky Cheese (how I hate that place) and to a place called Puzzles Fun Dome. The fun dome is filled with inflatable slides of all shapes and sizes. I think that Daniel ran off all the calories that we fed him that day. They were exhausted by the time we came home.
Daniel is doing well. We are still holding at 4 meals per day (every 3 hours) and I am working him back up to 10 oz meals. He has steadily improved and yesterday was the first day that he took 40.2 oz total for the day. Today he is going to beat that record. We will keep him at this for a while to make sure he's doing okay and then I'll try 5 meals a day. We need to let him adjust to this after being so sick. Daniel made his visit to Cincinnati to see the GI doc last week (his first visit since being home) and they are extremely impressed. He is doing so well that they don't need to see him for 6 months (yipeeeeeee)! The docs asked a lot of questions about what he is eating and they calculated everything and he is getting plenty of nutrition. We went the week before for labs and all his levels look really good so no worries there. We will just keep plugging along with the eating and try to come up with new things to feed him. I'm sure most of you know that everything we feed is pureed. I want to make sure you all understand that he is not eating typical 3-4 year old food. Once we get him acclimated to all this, we will work with someone to help him learn to chew. For now, he is doing wonderful.
Abi has started a preschool 2 days a week. She is still adjusting. This is all so new to her. Eric and I thought we needed to do this before she starts Kindergarten in August. We were having nightmares about just one day putting her on the bus and traumatizing her. She has never stayed with anyone other than her Grandparents so this is good for her. Eric thinks we need to up it to 3 days a week because she is having a hard time with goodbyes. The teacher says that while she cries when I drop her off and asks that I pick her up early (which I don't), she settles as soon as I leave and is good the rest of the day. We'll just wait and see. I don't really want to send her 3 days because I think she should be able to enjoy her last summer before school and to tell you the truth, I don't think an extra day is going to solve her crying when I leave. If you have a comment about this, leave me a message and let me know what you think (2 days or 3 will it matter?).
Eric and I are fine. I don't feel like I ever sit down. Between 4 feedings a day, getting Daniel's food ready, and all the other household duties, well it seems overwhelming sometimes. I just keep going like the energizer bunny I guess. I know that things are better than they used to be with Daniel's health and I should be grateful for that. However, sometimes I just feel the need to scream at all that needs to be done around here. But, I'm doing okay with everything and am just hoping that things continue on the right path and things even out. Eric is doing good too. He is working hard at work and is helping his parents out too. His dad has had some medical issues so Eric is helping with their mowing (5 acres - OMG) on top of our yard and is helping with whatever else they need. I guess you could say that we are both really busy. I think we speak to each other every couple of days (hahahaha)!
Well, I gotta go. I'll try to do better about updating all of this. Summer is here and we try to get outside as much as possible. Please know that we think of all of you often and hope that things are well in your household.
-Angela-
Tuesday, April 21, 2009
Getting better and a trip...
Daniel is doing better. I am thankful that we are over the hump. Our short hospital stay at Dayton Children's helped him out and we are back to working on eating by mouth. We started out with just 2 oral feeds per day and yesterday (Monday) went to 3. He didn't forget a thing and picked right back up where he left off. Monday he only needed to be on the feeding pump for 8 hours as he ate enough by mouth for the rest of his calories. So far, he is on his way to a better day today. We will keep him on 3 feeds per day for a week or so and then will move up to 4 and then back up to 5. It may take us about a month to get him back up to 5 feeds per day. My next task is to find a dietician in the area that can help me with his diet. Wish me luck!
Abigale is doing great. She is happy we are home and we have started to talk to her about kindergarten. I'm still concerned if she is ready or not and Eric and I are talking about trying to find her a part-time pre-k class to go to for the summer. I have been on the phone this morning inquiring. She has a dentist appointment tomorrow morning and we are going to go visit a pre-k class tomorrow afternoon to see what it is like. I just want to send her about 3 days a week to get her acclimated to going to kindergarten. I'm hoping that we can find something for her because I think it would do her good. I'm not sure how I will feel because she has never stayed with anyone other than us or her grandparents. I'm not sure how I feel about leaving her at a school.
Finally, we (me, Abi, Daniel and my mom) are going to go to Louisville, KY next week. I need to get my CIC (insurance class) update done so it will be over and since Daniel is doing well and I was able to get in we decided that there is no time like the present. I wasn't planning on going this soon but I need to get it done by August because of Abi starting Kindergarten and since we have went to Louisville that last 2 years and know the area, I decided to go and get it done now. I just hate these classes but need to keep my designation for when I go back to work. Did I say go back to work???? What have I been doing these last 3 1/2 years??? This has been more work than any job I ever had.
Well, I gotta get off here and get some things done. I have a million and one things to do. Take care.
-Angela-
Abigale is doing great. She is happy we are home and we have started to talk to her about kindergarten. I'm still concerned if she is ready or not and Eric and I are talking about trying to find her a part-time pre-k class to go to for the summer. I have been on the phone this morning inquiring. She has a dentist appointment tomorrow morning and we are going to go visit a pre-k class tomorrow afternoon to see what it is like. I just want to send her about 3 days a week to get her acclimated to going to kindergarten. I'm hoping that we can find something for her because I think it would do her good. I'm not sure how I will feel because she has never stayed with anyone other than us or her grandparents. I'm not sure how I feel about leaving her at a school.
Finally, we (me, Abi, Daniel and my mom) are going to go to Louisville, KY next week. I need to get my CIC (insurance class) update done so it will be over and since Daniel is doing well and I was able to get in we decided that there is no time like the present. I wasn't planning on going this soon but I need to get it done by August because of Abi starting Kindergarten and since we have went to Louisville that last 2 years and know the area, I decided to go and get it done now. I just hate these classes but need to keep my designation for when I go back to work. Did I say go back to work???? What have I been doing these last 3 1/2 years??? This has been more work than any job I ever had.
Well, I gotta get off here and get some things done. I have a million and one things to do. Take care.
-Angela-
Monday, April 13, 2009
Day Fifty Eight & Fifty Nine & Home....
Thursday Daniel and I went to clinic to say our last goodbye and complete the discharge paperwork. It was hard to leave on such a bad note because Daniel was definitely not feeling good. He didn't really want to be social with anyone and they all loved him so much that it was hard to see him not interacting with them like he was the weeks before. It was bittersweet because I would have liked to walk out of there with him eating so much by mouth and we walked out with him eating nothing. Don't get me wrong, I know that he will pick back up with his eating it was just sad for me and for the people at clinic. I made some really close friends and will cherish all the memories and am so glad we made the decision to go because Daniel really came a long way with his eating and now we just need to get back on track. We went back to the hotel to wait on daddy's plane and then picked him up at the airport. We stayed overnight and finally on day fifty nine, we left Richmond VA.
Friday & Saturday - we hit the road early on Friday because Eric and I were both sure that Daniel was going to need to be admitted to Children's in Dayton. The trip was a good one and Daniel was comfortable in the backseat watching a video for the entire trip. We arrived home at about 7:00pm and called the doc on call at Children's. She finally called back and said that we needed to bring him in. Let me tell you that Abi was not happy that we had just gotten home and had to leave again. Daniel and I got to Children's at about 8:30 pm and finally at 5:00am on Saturday we were up in a room. I hate emergency departments!!! Daniel got IV fluids from the time we got to the ER until late Saturday night at which time they changed him over to 1/2 strength formula. He did well. He still didn't look good but he wasn't getting any worse.
Sunday (Easter) - They started full strength feeds and he needed to stay on them for 24 hours. Mamaw and Papaw came and stayed with him so I could go home and be with Abi for a while since it was Easter. The Easter Bunny visited and hid some eggs around the house and her Easter basket and she was so extremely excited. She said she was a little sad that Daniel wasn't home to help her find eggs and that made me step back a little. She is so grown up! It amazes me everyday. We called on Daniel throughout the day and he continued to do well so they said we could probably go home on Monday.
Monday - the doc came in and said since he is doing well we could go home but no eating by mouth for a day or so. They have had him on feeds for 24 hours straight so we need to wean him back down to just 12 hours at night before we can feed him again. This will take me a day or so to do. Hopefully by Wednesday or Thursday I'll have him eating again. Please keep us in your thoughts that this is the end of this nasty virus. He is still looking a little "off" so I'll just have to wait and see.
Well, I gotta get off here. I'll update again soon.
-Angela-
Friday & Saturday - we hit the road early on Friday because Eric and I were both sure that Daniel was going to need to be admitted to Children's in Dayton. The trip was a good one and Daniel was comfortable in the backseat watching a video for the entire trip. We arrived home at about 7:00pm and called the doc on call at Children's. She finally called back and said that we needed to bring him in. Let me tell you that Abi was not happy that we had just gotten home and had to leave again. Daniel and I got to Children's at about 8:30 pm and finally at 5:00am on Saturday we were up in a room. I hate emergency departments!!! Daniel got IV fluids from the time we got to the ER until late Saturday night at which time they changed him over to 1/2 strength formula. He did well. He still didn't look good but he wasn't getting any worse.
Sunday (Easter) - They started full strength feeds and he needed to stay on them for 24 hours. Mamaw and Papaw came and stayed with him so I could go home and be with Abi for a while since it was Easter. The Easter Bunny visited and hid some eggs around the house and her Easter basket and she was so extremely excited. She said she was a little sad that Daniel wasn't home to help her find eggs and that made me step back a little. She is so grown up! It amazes me everyday. We called on Daniel throughout the day and he continued to do well so they said we could probably go home on Monday.
Monday - the doc came in and said since he is doing well we could go home but no eating by mouth for a day or so. They have had him on feeds for 24 hours straight so we need to wean him back down to just 12 hours at night before we can feed him again. This will take me a day or so to do. Hopefully by Wednesday or Thursday I'll have him eating again. Please keep us in your thoughts that this is the end of this nasty virus. He is still looking a little "off" so I'll just have to wait and see.
Well, I gotta get off here. I'll update again soon.
-Angela-
Wednesday, April 8, 2009
Day Fifty Six and Fifty Seven
I didn't post yesterday (Tuesday) because it was not a good day. We went off to the clinic in the morning but by the time we got there Daniel was looking extremely pale and was not in the mood to eat. We decided to go home and take another day off. Well, by 6:30pm last night he was "dumping" big time. Everything that was going in was going out and he was not staying hydrated. I decided that we needed to make a trip to the ER and upon checking his blood we found he was dehydrated and needed to get some fluids. We were at the hospital until after midnight at which time his blood levels showed no dehydration. We were instructed that he can't have anything except pedialyte until tonight at bedtime. At that time, I will change him to 1/2 strength formula until tomorrow afternoon and then change him over to full strength formula. Would you all take a moment to cross your fingers and toes that he can tolerate starting his feeds back up. He caught this virus and it has really taken it's toll on him. We need his intestines to start working and accept the formula before we can feed him by mouth again.
We are still going to leave on Friday. I called the clinic today and Daniel and I will visit there in the morning to say goodbye to everyone and sign Daniel's discharge paperwork. They say even with this set back we are okay to go. Daniel knows the protocol and so do I so we shouldn't have any problem getting him back to oral eating when he is well enough to do so. We could have opted to stay another week but we need to get home and get closer to his regular doctors. If he doesn't tolerate his formula when we start them back up, we most likely will need to be admitted to the hospial to receive nutrition until his intestines get back to where they were. If that happens, I don't want it to be here in Richmond, I want it to be at home. I'm really sad that our journey here will end on such a downer because I wanted Daniel to experience having his "graduation" party from the feeding clinic and for Daniel to show off his new eating talents to G&G Heyne and Mamaw & Papaw when he came home. While we won't have the "graduation" part at the clinic, he will show off all his new talents when he's feeling better.
Well, I gotta go. I hate even writing about this. I wanted to write about how well Daniel was doing and instead I gotta write about how sick he is.
-Angela-
We are still going to leave on Friday. I called the clinic today and Daniel and I will visit there in the morning to say goodbye to everyone and sign Daniel's discharge paperwork. They say even with this set back we are okay to go. Daniel knows the protocol and so do I so we shouldn't have any problem getting him back to oral eating when he is well enough to do so. We could have opted to stay another week but we need to get home and get closer to his regular doctors. If he doesn't tolerate his formula when we start them back up, we most likely will need to be admitted to the hospial to receive nutrition until his intestines get back to where they were. If that happens, I don't want it to be here in Richmond, I want it to be at home. I'm really sad that our journey here will end on such a downer because I wanted Daniel to experience having his "graduation" party from the feeding clinic and for Daniel to show off his new eating talents to G&G Heyne and Mamaw & Papaw when he came home. While we won't have the "graduation" part at the clinic, he will show off all his new talents when he's feeling better.
Well, I gotta go. I hate even writing about this. I wanted to write about how well Daniel was doing and instead I gotta write about how sick he is.
-Angela-
Monday, April 6, 2009
Day Fifty Five
Daniel is feeling better. His temperature broke last night and he is slowly coming back to himself. He is still a little pale and his energy level is down but I'm sure he'll be back to normal soon. Since he didn't have a fever today, we will go back to clinic tomorrow. We may not push as much volume as normal but I just want to get these last few days over with and head home. I can't believe I have been away from home for 55 days.....it seems like forever!!!!
Also, thank you all for keeping Daniel and me in your thoughts and prayers. For those of you that have kept up with this blog, I so appreciate that you have been walking this journey with Daniel and I even if it is through my words and thoughts. Life is hard sometimes but it is nice to know that other people are there to give me words of encouragement as well as inspiration to keep going. I would never give up on Daniel but it's nice to have some really good friends and family in my corner.
Off to bed for tonight.
-Angela-
Also, thank you all for keeping Daniel and me in your thoughts and prayers. For those of you that have kept up with this blog, I so appreciate that you have been walking this journey with Daniel and I even if it is through my words and thoughts. Life is hard sometimes but it is nice to know that other people are there to give me words of encouragement as well as inspiration to keep going. I would never give up on Daniel but it's nice to have some really good friends and family in my corner.
Off to bed for tonight.
-Angela-
Sunday, April 5, 2009
Day Fifty Three and Fifty Four
Nothing is ever easy....I say this to myself at least 1x per day. I'm not sure why I was picked to take on the monumental task of taking care of a child with Short Gut but I have accepted it and roll with whatever comes my way. However, today was one of those days where I kept asking "why me? why me?". No one answered but I still asked.
Anyway, this weekend did not go as planned. Friday Daniel awoke at 3:00am only to start throwing up. He continued to do this throughout the night and by morning he had a fever. Needless to say, there was no feeding him so off to the store we went to get Pedialyte and hooked him up to his pump for the day to keep him from getting dehydrated. He was a miserable mess the rest of the day and all through the night. About 2:00am, he awoke with a temperature of 102. I went ahead and gave him some Tylenol. Remember, he can only have 2 doses of Tylenol per day so I have now used 1 dose and he can't have another until bedtime Sunday night....oh my! He was up and down the rest of the night and by morning his temperature was still holding at 102. He was beet red and hot to the touch and I wasn't sure what to do for him. I found an urgent care in the area but they didn't open until 4:00pm and by now his temperature is up to 103. I took him to the local emergency room where bloodwork was done and a chest xray. All came back negative for any bacterial infection so he just has a virus and will need to get over it. We got onto the phone with Cincinnati Children's GI who called our GI doc at home and he agreed that since the temperature was now up to 104 that we needed to give him some extra relief. Because the temperature is so high, we are giving him 2 doses of Tylenol and 2 doses of Motrin. Nothing more per doc. He has had 1 dose of Tylenol and 1 dose of Motrin today. The temperature was going down but now it is creeping back up so I'll have to wait and see what happens. We don't want to give him anything unnecessary because of liver/stomach damage. Let me say this, the hospital was nice and the doc was nice but it is extremely scary being so far from home and not being able to take Daniel to his regular docs. This was not a children's hospital and the doc didn't even know what Short Gut was.....excuse me? I had to explain and then explain to the nurse why I was feeding Daniel with a feeding tube. Don't nurses have to know this before they graduate????
Onto our next hurdle of the day....I was changing Daniel's pull up and he had his backpack on. When I went to put the new pull up on, he had his arms hanging at his side. In a split second, he lifted his arm and got it caught in his feeding tube line and managed to pull his feeding button out with the balloon inflated. The whole thing came right out. Daniel is screaming and after my initial 1 second of freaking, I camly get my supplies, deflate the balloon and replace his button. I just want to go home...I don't want to be in Richmond VA anymore! He's doing fine and the button is working fine so everything will be okay. Can I ask again, why me?
Well, we won't be going to clinic tomorrow. We have to be at least 24 hours with no temperature before we can come back so we'll have to wait to see if we go back on Tuesday or not. I'll let you all know tomorrow how he is doing.
Good Night....Sleep Tight!!!
-Angela-
Anyway, this weekend did not go as planned. Friday Daniel awoke at 3:00am only to start throwing up. He continued to do this throughout the night and by morning he had a fever. Needless to say, there was no feeding him so off to the store we went to get Pedialyte and hooked him up to his pump for the day to keep him from getting dehydrated. He was a miserable mess the rest of the day and all through the night. About 2:00am, he awoke with a temperature of 102. I went ahead and gave him some Tylenol. Remember, he can only have 2 doses of Tylenol per day so I have now used 1 dose and he can't have another until bedtime Sunday night....oh my! He was up and down the rest of the night and by morning his temperature was still holding at 102. He was beet red and hot to the touch and I wasn't sure what to do for him. I found an urgent care in the area but they didn't open until 4:00pm and by now his temperature is up to 103. I took him to the local emergency room where bloodwork was done and a chest xray. All came back negative for any bacterial infection so he just has a virus and will need to get over it. We got onto the phone with Cincinnati Children's GI who called our GI doc at home and he agreed that since the temperature was now up to 104 that we needed to give him some extra relief. Because the temperature is so high, we are giving him 2 doses of Tylenol and 2 doses of Motrin. Nothing more per doc. He has had 1 dose of Tylenol and 1 dose of Motrin today. The temperature was going down but now it is creeping back up so I'll have to wait and see what happens. We don't want to give him anything unnecessary because of liver/stomach damage. Let me say this, the hospital was nice and the doc was nice but it is extremely scary being so far from home and not being able to take Daniel to his regular docs. This was not a children's hospital and the doc didn't even know what Short Gut was.....excuse me? I had to explain and then explain to the nurse why I was feeding Daniel with a feeding tube. Don't nurses have to know this before they graduate????
Onto our next hurdle of the day....I was changing Daniel's pull up and he had his backpack on. When I went to put the new pull up on, he had his arms hanging at his side. In a split second, he lifted his arm and got it caught in his feeding tube line and managed to pull his feeding button out with the balloon inflated. The whole thing came right out. Daniel is screaming and after my initial 1 second of freaking, I camly get my supplies, deflate the balloon and replace his button. I just want to go home...I don't want to be in Richmond VA anymore! He's doing fine and the button is working fine so everything will be okay. Can I ask again, why me?
Well, we won't be going to clinic tomorrow. We have to be at least 24 hours with no temperature before we can come back so we'll have to wait to see if we go back on Tuesday or not. I'll let you all know tomorrow how he is doing.
Good Night....Sleep Tight!!!
-Angela-
Friday, April 3, 2009
Day Fifty Two
Still holding our own. Daniel's weight is the same as Wednesday at 36.5 and his total volume for the whole day was 33.9. He is doing really well with everything! This weekend will be our challenge to see if we can get 50 oz into him both days so he doesn't need to be on the pump and then see what his weight is on Monday. Please keep us in your thoughts that his weight stays up after being off the pump for 2 days in a row. I know I can get him to 50 oz but I don't know if his weight will cooperate. We need to know that his weight won't fluctuate by a pound or more if he's off the pump.
We only have next week and then we'll be on our way home on Friday. I'm so looking forward to getting home and getting into a routine and working with Daniel. There is still so much to do. We really need to find a nutritionist when we get home to help us with additional foods that Daniel might be able to tolerate. We need a balanced diet that includes a more comprehensive list of foods. We'll work on this when we get home.
Also, 3 of the kids that have been here from the date Daniel started graduated this week. I'll write more about all of them when I have more time but I want Emily, Ethan and Joseph to know that we will miss them next week and their moms (Abi, Kelly, and Shilla/Shirley) I will miss you too. These people have become like family in 8 short weeks and I hope that we always remain in touch.
Off to bed (finally) - will update tomorrow.
-Angela-
We only have next week and then we'll be on our way home on Friday. I'm so looking forward to getting home and getting into a routine and working with Daniel. There is still so much to do. We really need to find a nutritionist when we get home to help us with additional foods that Daniel might be able to tolerate. We need a balanced diet that includes a more comprehensive list of foods. We'll work on this when we get home.
Also, 3 of the kids that have been here from the date Daniel started graduated this week. I'll write more about all of them when I have more time but I want Emily, Ethan and Joseph to know that we will miss them next week and their moms (Abi, Kelly, and Shilla/Shirley) I will miss you too. These people have become like family in 8 short weeks and I hope that we always remain in touch.
Off to bed (finally) - will update tomorrow.
-Angela-
Thursday, April 2, 2009
Day Fifty One
Another banner day here in Richmond VA. Daniel took 25.7 oz in clinic and 9.7 oz here tonight for a total of 35.4! He would have done more but I cut the last meal in clinic short because he had eaten so much the first 3 meals. We usually have him eat for 20 minutes and he has been averaging about 7oz per meal at clinic this week. He was averaging about 5.7. So, I asked them to cut the 4th meal short at 12 minutes so he didn't get overwhelmed. I sure didn't want any upchucking on the drive home.
I'm still counting down the days until we get to come home. 1 week from tomorrow we will be on the road home.....yea!!!!
-Angela-
I'm still counting down the days until we get to come home. 1 week from tomorrow we will be on the road home.....yea!!!!
-Angela-
Wednesday, April 1, 2009
Day Fifty
We have been in Richmond VA for 50 days!!! Daniel's day was good. His total volume in clinic was 26.3 oz and 10.1 oz here tonight for a total volume of 36.4! He was weighed again today and was back up to 36.5 pounds. I just don't understand how you can lose a 1 pound 2 oz in 2 days and gain back 1 pound 3 oz in 2 days! I'm hoping that the nurse just weighed him wrong on Monday but we'll have to wait and see. He will be weighed again on Friday and then again on next Monday after he is hopefully off the feeding pump both Saturday and Sunday. I'll be anxious to see what happens. The teeth brushing is going really well too.
We are counting down the days until we get to come home. Eric will be flying in next Thursday and once we are done with clinic on Friday we will hit the road on our way back to Ohio. It's going to be a busy week for me because now I need to start packing up all this stuff to take back home. We had to bring so much with us and now we have to get it back home too. I told Eric that I might just kiss the garage floor once the car is parked at home! I just want to get there and get into a routine and see if Daniel gains weight on this once we do it every single day. But, most of all, I want to pick up my little girl (who isn't so little anymore) and hold her tight!
I'm off to get some needed rest. Will update tomorrow.
-Angela-
We are counting down the days until we get to come home. Eric will be flying in next Thursday and once we are done with clinic on Friday we will hit the road on our way back to Ohio. It's going to be a busy week for me because now I need to start packing up all this stuff to take back home. We had to bring so much with us and now we have to get it back home too. I told Eric that I might just kiss the garage floor once the car is parked at home! I just want to get there and get into a routine and see if Daniel gains weight on this once we do it every single day. But, most of all, I want to pick up my little girl (who isn't so little anymore) and hold her tight!
I'm off to get some needed rest. Will update tomorrow.
-Angela-
Tuesday, March 31, 2009
Day Forty Nine
Daniel had a good day today. His total volume at clinic was 27.0 and his meal with me tonight was 10.3 (the highest ever) so total volume was 37.3 (like you couldn't do the math). We are still continuing as if he didn't lose a pound over the weekend. He will be weighed tomorrow and then again on Friday. We will then try to get enough into him over the weekend so he doesn't have to be on the pump and weigh him again on Monday. They will compare this Monday's weight to next Monday's weight and hope that he is either the same or has gained weight. Can you all say an extra little prayer that this happens. We cannot afford another weight loss. We have basically removed most of the carbohydrates from his diet and will see if this makes any type of difference.
In other news, Daniel is doing well with letting us brush his teeth. We started with a finger brush and only used it 1 time. He was ready for a big boy toothbrush. We haven't put any toothpaste on it yet as we are just getting him used to having the toothbrush in his mouth. He did great! He is really coming along with all this stuff related to his mouth. Big Hooray for Daniel!
I'm doing fine but really looking forward to coming home. I miss my little girl and cannot wait for that first big hug and kiss. It won't be long now!
Off for tonight - will update tomorrow.
-Angela-
In other news, Daniel is doing well with letting us brush his teeth. We started with a finger brush and only used it 1 time. He was ready for a big boy toothbrush. We haven't put any toothpaste on it yet as we are just getting him used to having the toothbrush in his mouth. He did great! He is really coming along with all this stuff related to his mouth. Big Hooray for Daniel!
I'm doing fine but really looking forward to coming home. I miss my little girl and cannot wait for that first big hug and kiss. It won't be long now!
Off for tonight - will update tomorrow.
-Angela-
Monday, March 30, 2009
Day Forty Eight
I really thought about not updating tonight....I just didn't want to talk about it. But, I know that there are some of you that read each night (or at least the next day) so I thought I would for you. Today was not good for Daniel in regards to weight. We get weighed 1st thing on Monday's and Daniel has lost 1 pound over the weekend. At this point, I don't have the time nor the strength to go into all the reasons why this could have happened. The BIG problem will be if it is from not absorbing the nutrients/calories. However, we aren't going to know that right this minute. We will need to have some tests done to see and that won't happen until we come home. It could be several different reasons too. It may be that he is having a problem with carbohydrates. Kids with Short Gut do not do well with carbohydrates. It's hard to eat by mouth when you have to limit your intake to meats and vegetables. Everything is so darn bland and Daniel needs that "sweet" taste to like his food. But, there are other things that turn into sugars too and maybe we are adding too many of these items to his food. We don't know!!!!! Right now, we are continuing with what we are doing and Daniel will be weighed on Wednesday and on Friday. We are limiting the amount of carbs he is getting and we will try to feed him enough to be off the pump on Saturday and Sunday and see if he continues to lose weight again. If he does, we are most likely in trouble and may not be able to keep him completly off the tube. It's never easy with all this and just when you think you have taken a step forward, we go back 2 steps. Oh well, now do you see why I hesitated to even post tonight?
Off to bed, will update tomorrow.
-Angela-
Off to bed, will update tomorrow.
-Angela-
Sunday, March 29, 2009
Day Forty Six and Forty Seven
Saturday and Sunday were good days for Daniel. I was able to get 50.1 oz into him yesterday and 51.7 oz into him today. So.....HE DID NOT USE THE FEEDING PUMP/TUBE AT ALL THIS WEEKEND!!! He did great! I'm not thrilled with the fact that I feel like I am stuffing him with food but he doesn't complain and so far I haven't seen any ill effects from feeding him 5 meals per day about 2 hours apart. It is going to be hard because this schedule is so demanding and we won't know until we come home if it is working or not because we can't do it every day here in Richmond. As I have said, many times before, the meals are too close together in clinic so there is no way we are going to know absolutely for sure that he is going to do well and is absorbing all the nutrients/calories until we get home and do this every day. It will most likely take us at least a month of him eating all by mouth and us weighing him every single day at the same time to see if he is gaining weight or not. I have lots of work to do when I get home!!! Anyone want to move in with me and become an expert at pureeing food for Daniel????
Well, off to bed as tomorrow is back to the clinic. Will update then.
-Angela-
Well, off to bed as tomorrow is back to the clinic. Will update then.
-Angela-
Friday, March 27, 2009
Day Forty Five
Another day gone by! Daniel did well and took 23.6 oz in clinic and another 8.8 oz tonight for a total volume of 32.4. He needs 50 oz per day so we are short 17.6 oz to be totally tube free. As I have said before, we won't meet 50 oz on a clinic day because the meals are too close together. Tomorrow and Sunday will be telling to see how much he can take on a day when we are home and I feed him all 5 meals. I'm hoping that we can do both days tube free but I'll have to wait and see. I don't want to push him too far and am anxious and emotional too. Eric and I are scared, nervous and every other emotion you can think about. We want this to work for Daniel but we also don't want to push his body too much. I won't be disappointed if he can't make 50 oz every day and we have to use the pump a little when we get home. I just can't believe how well he is doing. We have never pushed so many changes in such a short amount of time. Please just keep Daniel in your thoughts that he can do this and most of all that his body can handle it.
Abi continues to do well. Last night was the first night that she asked "when are you coming home mama?" I thought the question would come earlier than it did but I think all of us are ready to be home. 2 more weeks and I will be there Sweet Pea! I miss you so much and love you more than ever. You have been through so much even though you are healthy. You have endured so much for your little brother. He loves you so much too!
Off to bed - will update tomorrow to let you know what Daniel's volume for the day is.
-Angela-
Abi continues to do well. Last night was the first night that she asked "when are you coming home mama?" I thought the question would come earlier than it did but I think all of us are ready to be home. 2 more weeks and I will be there Sweet Pea! I miss you so much and love you more than ever. You have been through so much even though you are healthy. You have endured so much for your little brother. He loves you so much too!
Off to bed - will update tomorrow to let you know what Daniel's volume for the day is.
-Angela-
Thursday, March 26, 2009
Day Forty Four
Another good day! Daniel is doing really well in clinic and at home. His volume in clinic today was 22.7 and his volume for our meal at home was 9.3 for a total volume of 32 oz today. He is still working on taking bigger drinks of his juice/formula and any other little things that the therapists think we need to work on to make the transition home. I have asked them to introduce the toothbrush to him next week and work with it for the next 2 weeks we have here. As most of you know, there was no getting into his mouth before we came here. He now lets me put my fingers into his mouth to do his excercises but we haven't worked on putting anything other than our fingers and a spoon in there. I would love for him to let us put a toothbrush in there to brush his teeth. We need to be able to do this.
Also, I have decided not to introduce the soy milk while we are here in Richmond. There is just too much of a chance that his body may not accept it and we would take a huge step backward. I don't want to have to stay here any longer than 4/10 so we will wait to introduce it to him when we get home. I think this is the best decision.
Finally, I want to say a big "THANK YOU" to my friend, Tammy. The gift you sent for Daniel and me could not have come at a better time! You are such a good friend to think of us and to keep up with all that is going on with Daniel. Thank you, again!
Off to bed so I'll update tomorrow.
-Angela-
Also, I have decided not to introduce the soy milk while we are here in Richmond. There is just too much of a chance that his body may not accept it and we would take a huge step backward. I don't want to have to stay here any longer than 4/10 so we will wait to introduce it to him when we get home. I think this is the best decision.
Finally, I want to say a big "THANK YOU" to my friend, Tammy. The gift you sent for Daniel and me could not have come at a better time! You are such a good friend to think of us and to keep up with all that is going on with Daniel. Thank you, again!
Off to bed so I'll update tomorrow.
-Angela-
Wednesday, March 25, 2009
Day Forty Three
Today was good. The days are winding down and we are mainly working on things that Daniel has some trouble with (like taking big drinks). His volume was down a little today at clinic to 19.5 and our meal at the hotel tonight was 8.9 so we had a grand total of 28.4. The volume is down from clinic because they are concentrating on getting him to do things instead of the volume. We know he can do the volume when we have time between the meals on the weekend and we know he can't do it in clinic because the meals are too close together so we agreed to just work on things that he having trouble with.
Also, we are still struggling with the decision to introduce the soy milk to him next week. It is my decision in the end and right now I am on the fence. He is doing well with what we are giving him and with only 2 weeks left after this we are afraid if we introduce it and he has a set back there won't be time to "fix" things. I can introduce it at home slowly. I can either "fade" it it by adding small amounts to his juice/formula and over time gradually add more or I can give it to him every other meal. They will introduce it next week if I want but it's my decision and I'm torn. I would really like him to be on this because it is so much less expensive than the juice/formula that has to be prescribed but I don't want to mess things up that are going so well. I'll ponder it a little longer and will let you know what I decide.
Finally, thank you to my sister, Sheryl and brother, Kenny for the card you sent. Thanks for thinking of me and Daniel. We love you!
-Angela-
Also, we are still struggling with the decision to introduce the soy milk to him next week. It is my decision in the end and right now I am on the fence. He is doing well with what we are giving him and with only 2 weeks left after this we are afraid if we introduce it and he has a set back there won't be time to "fix" things. I can introduce it at home slowly. I can either "fade" it it by adding small amounts to his juice/formula and over time gradually add more or I can give it to him every other meal. They will introduce it next week if I want but it's my decision and I'm torn. I would really like him to be on this because it is so much less expensive than the juice/formula that has to be prescribed but I don't want to mess things up that are going so well. I'll ponder it a little longer and will let you know what I decide.
Finally, thank you to my sister, Sheryl and brother, Kenny for the card you sent. Thanks for thinking of me and Daniel. We love you!
-Angela-
Tuesday, March 24, 2009
Day Forty Two
Another day at the clinic - 20.3 oz at clinic and 9 at the hotel tonight for a total of 29.3. The volume was down at clinic today because they are working with Daniel to take bigger drinks of his juice/formula so this took away from the food volume. Drinking big drinks has always been a problem for Daniel and it is something they want to correct. I'm not sure I believe at this point that they can get him to do it. I guess I'll just have to wait and see.
We had our weekly conference today. We are still on track to graduate April 10th. I'll tell you that this date cannot come fast enough for me. I so want to go home! We are continuing to work on things that Daniel is having trouble with. I can tell you this, he does not have trouble taking his bites. He is doing so well with his food. Now, if we can get him to do better with his drink!
I'm off to bed as tomorrow is another long day at the clinic. Will update tomorrow.
-Angela-
We had our weekly conference today. We are still on track to graduate April 10th. I'll tell you that this date cannot come fast enough for me. I so want to go home! We are continuing to work on things that Daniel is having trouble with. I can tell you this, he does not have trouble taking his bites. He is doing so well with his food. Now, if we can get him to do better with his drink!
I'm off to bed as tomorrow is another long day at the clinic. Will update tomorrow.
-Angela-
Monday, March 23, 2009
Day Forty One
Clinic was fine today. Daniel did really well with his volume taking in 24.2 oz in clinic and 9.3 oz for his meal tonight with me so that makes a total of 33.5 oz today! This is pretty good for a clinic day. His weight was good today and we will re-weigh him on Friday to see if he is doing okay. We went to full strength calorie boosting today and I'm not convinced yet. He had a little potty problem tonight so I'll have to watch that and make sure that he is doing ok with this stuff they are adding to the food to get his calories up.
Daniel still has this nasty cold and is still hacking and coughing. I sure hope this goes away soon. He just seems so uncomfortable.
Abigale is doing fine. I talk with her each night and send her cards with stickers in the mail. She gets so excited to get mail from me. I had Daddy take home a few care packages to her and they have been giving the stuff to her a little at a time so it's great to hear her so excited telling me about what she got that day.
I'm off to bed. Will update tomorrow.
-Angela-
Daniel still has this nasty cold and is still hacking and coughing. I sure hope this goes away soon. He just seems so uncomfortable.
Abigale is doing fine. I talk with her each night and send her cards with stickers in the mail. She gets so excited to get mail from me. I had Daddy take home a few care packages to her and they have been giving the stuff to her a little at a time so it's great to hear her so excited telling me about what she got that day.
I'm off to bed. Will update tomorrow.
-Angela-
Sunday, March 22, 2009
Day Thirty Nine and Day Forty
Sorry for not updating yesterday but it was a busy day! Saturday was a stellar day for Daniel. He had all 5 meals here at the hotel and his total volume for the day was 42.3 oz!!! He did great but had me worried a few times. Because of this nasty cold he has he was hacking and coughing during the meals and I thought for sure that he was going to throw up everything that I had fed him. But, he proved me wrong and held it all in. No bad "dumping" or anything and he was as fun loving as can be when you had a bad cold. He only had to be on the pump for 2.7 hours!!
Sunday - Are you ready for this????? Drum Roll please!!! Daniel's total volume at the end of the 5 meals was 46.3 oz!!! He needs to get 50 oz to be able to come off the pump. So, we sat on the couch at the end of the day before bed time and he drank his 3.7 oz. Know what that means???? THIS IS THE FIRST NIGHT THAT DANIEL IS GOING TO BED WITHOUT BEING HOOKED UP TO ANYTHING!!!!!!!!!!! He has always either been hooked up to IV or feeding tube. Tonight he is completely free of all apperatus. My gosh, you don't know how good that feels for me to type that message to you. I can't believe how well he did today and with a cold to boot. I am just so darn proud of him!
Anyway, not to bring you all down on that high note but I wanted to explain that during the week he will need to be back on the pump. I am able to get this high volume into him because I can space the meals further apart than they can at the clinic. They do not have 12 hours to space the meals like I do. We have to do it in about 7 hours and Daniel's meals come about 1 hour and 15 minutes apart. Therefore, they will not be able to get 9 or 10 ounces in him because there isn't enough time in between feeds. So, I don't want you all to be disappointed when I post tomorrow night that he got a volume somewhere in the 20's. We just can't get 50 oz into him on a day we go to clinic. We have another 3 weeks here in Richmond and this next week we will be working on boosting Daniel's calories of his food to full strength and getting him to take bigger drinks (we really need to work on this)! The following week we will work on introducing the soy milk and the last week we are here will just be maintenance. Working on anything that he still might be having trouble with. Then we get to come home and see if all this works. I can tell you that I am very pleased with what Daniel has accomplished so far.
BTW - for those of you wondering from Friday's post whether Daniel had to sit at the table after the meal to finish his drink....the answer is yes, but it didn't work! He will not get the 3.5 to 4 oz that he needs during the meal in because he doesn't take big enough drinks. I did what they told me and he sat and sat and sat until the next meal was scheduled. There was no way that he was going to drink after that timer went off and the meal ended. So, I wasn't sure what to do but I added on what he didn't drink and then sat with him and he drank it. As long as I sat here with him, he would drink so that's what I did. They won't like that at clinic but I didn't know any other way to get it into him.
Well, I gotta go and get all my paperwork done for tomorrow. Take care and thank you so much for all the thoughts and prayers. Please keep them coming!
-Angela-
Sunday - Are you ready for this????? Drum Roll please!!! Daniel's total volume at the end of the 5 meals was 46.3 oz!!! He needs to get 50 oz to be able to come off the pump. So, we sat on the couch at the end of the day before bed time and he drank his 3.7 oz. Know what that means???? THIS IS THE FIRST NIGHT THAT DANIEL IS GOING TO BED WITHOUT BEING HOOKED UP TO ANYTHING!!!!!!!!!!! He has always either been hooked up to IV or feeding tube. Tonight he is completely free of all apperatus. My gosh, you don't know how good that feels for me to type that message to you. I can't believe how well he did today and with a cold to boot. I am just so darn proud of him!
Anyway, not to bring you all down on that high note but I wanted to explain that during the week he will need to be back on the pump. I am able to get this high volume into him because I can space the meals further apart than they can at the clinic. They do not have 12 hours to space the meals like I do. We have to do it in about 7 hours and Daniel's meals come about 1 hour and 15 minutes apart. Therefore, they will not be able to get 9 or 10 ounces in him because there isn't enough time in between feeds. So, I don't want you all to be disappointed when I post tomorrow night that he got a volume somewhere in the 20's. We just can't get 50 oz into him on a day we go to clinic. We have another 3 weeks here in Richmond and this next week we will be working on boosting Daniel's calories of his food to full strength and getting him to take bigger drinks (we really need to work on this)! The following week we will work on introducing the soy milk and the last week we are here will just be maintenance. Working on anything that he still might be having trouble with. Then we get to come home and see if all this works. I can tell you that I am very pleased with what Daniel has accomplished so far.
BTW - for those of you wondering from Friday's post whether Daniel had to sit at the table after the meal to finish his drink....the answer is yes, but it didn't work! He will not get the 3.5 to 4 oz that he needs during the meal in because he doesn't take big enough drinks. I did what they told me and he sat and sat and sat until the next meal was scheduled. There was no way that he was going to drink after that timer went off and the meal ended. So, I wasn't sure what to do but I added on what he didn't drink and then sat with him and he drank it. As long as I sat here with him, he would drink so that's what I did. They won't like that at clinic but I didn't know any other way to get it into him.
Well, I gotta go and get all my paperwork done for tomorrow. Take care and thank you so much for all the thoughts and prayers. Please keep them coming!
-Angela-
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