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-
Friday, March 20, 2009
Day Thirty Eight
Today was a good day! Daniel is doing better with his drink but not as good as we need him to be. His eating of food is great. This weekend, I will be working with him to get the volume of juice upward. We set the limit at 3.5 oz per meal so he will need to drink that much. If he doesn't finish during the 20 minute meal, he will have to sit at the table and drink until he takes at least 3.5 oz. I asked them how long I should let him sit there and they said "until he drinks it". They said that based on the fact that Daniel likes to play, run and go outside it will most likely only take 2 times of him having to sit at the table before he takes bigger sips of the drink and finishes during the meal. Once he gets to 3.5 oz we will work up to 4 oz. This is basically what he will need to drink so we are getting there. I'll let you know tomorrow night when I post if he had to sit at the table or not.
Daniel's total volume for today was 30.9 oz! He really only needs 2 more oz per meal and he would be totally off the feeding tube. We are working on it. We have 3 more weeks and Daniel is progressing each day. I was surprised that he did as well as he did today because he is still not feeling 100%. He is coughing and congested so I was happy with what we did today.
Check back tomorrow night and I'll let you know how he does.
-Angela-
Daniel's total volume for today was 30.9 oz! He really only needs 2 more oz per meal and he would be totally off the feeding tube. We are working on it. We have 3 more weeks and Daniel is progressing each day. I was surprised that he did as well as he did today because he is still not feeling 100%. He is coughing and congested so I was happy with what we did today.
Check back tomorrow night and I'll let you know how he does.
-Angela-
Thursday, March 19, 2009
Day Thirty Seven
We went back to clinic today. Daniel was still not 100% better as his nose is still stuffy and he is coughing but he wasn't running a fever and felt better than yesterday so back we went. His meals went well and his total volume for today was 27.7. He always does less in clinic because the meals are so close together. At home, I can space them about 2 1/2 hours apart but in clinic they run about 1 hour and 15 minutes apart. So volume is always an issue when the meals run too close together. Daniel really has his eating down and his bites are wonderful. For next week, we will work on boosting his calories and taking more volume during the meals. The following week, we will work on introducing back the soy drink and the final week we will work on anything that needs working on before we come home. Yes folks, we will be down to our final 3 weeks here in Richmond VA. I can't say that time has flown, because it hasn't. It has felt like we have been here for an eternity! I want to go home and see my little girl. However, I'm a little scared too. We have 3 weeks to finish up what needs to be done. Getting him to drink more and eat more! They say they can do it so let's hope they can.
Well, I'm off to bed for tonight. Will update tomorrow.
-Angela-
Well, I'm off to bed for tonight. Will update tomorrow.
-Angela-
Wednesday, March 18, 2009
Day Thirty Six
We did not go to clinic today. Daniel was up most of the night coughing and had a runny nose this morning. I thought it best to keep him home and see if he got any better. I still fed him his 5 meals for the day and he ate the food fine. The drink has become another problem so I need to talk with the therapist when we go back tomorrow. He was consistently drinking approximately 3.5 oz of drink with his meal. He stopped doing that after Monday. At this point, I don't know exactly the cause but I believe it was the substitute therapist that tried a new way of drinking with him and caused him to get air in his belly. I could be wrong and it might be that he has a sore throat, but, I doubt that because he wants me to feed him more food. He just doesn't want to drink. It seems like if it were his throat, he wouldn't want to eat or drink. Anyway, I'll have them work on getting his drinking back up to par. I just wish that they would leave a good thing alone. He was doing great with his drinking and then someone comes in and changes it and causes pain and now we backslide. GRRRRRR!
Today, Daniel's total volume was 31.5! This is a great volume when you aren't feeling well. The only problem was that most of it was food instead of drink. Daniel needs to be about equal in both. Due to the short gut, he needs the drink as much as the food. If Abi doesn't drink much for the day, it wouldn't bother us. With Daniel, he needs to drink!
Well, I gotta get myself to bed. Hoping you all had a good day. Abi told me the weather was beeeeeeutifullllll mommy! I miss her!
-Angela-
Today, Daniel's total volume was 31.5! This is a great volume when you aren't feeling well. The only problem was that most of it was food instead of drink. Daniel needs to be about equal in both. Due to the short gut, he needs the drink as much as the food. If Abi doesn't drink much for the day, it wouldn't bother us. With Daniel, he needs to drink!
Well, I gotta get myself to bed. Hoping you all had a good day. Abi told me the weather was beeeeeeutifullllll mommy! I miss her!
-Angela-
Tuesday, March 17, 2009
Day Thirty Five
A semi-good day. Daniel is coming down with some kind of cold. Right now it is just a runny nose but it must be affecting his throat because his drinking was way down today. When he would take a drink he would make a funny face and then block the straw so he didn't get a big amount. After he would swallow the drink, he would cough. So, the volume was down to 26.1 total for the day. They say that kids with colds will due this due to drainage in their throats. He is doing very well so he will bounce back. I just hope the cold doesn't hang on for any length of time.
Anyway, I will see how he sleeps tonight before I decide if we are going to the clinic tomorrow. If he is up a lot it might be better to stay home and feed him here rather than drag him off to the clinic for 4 short meals when I can do 5 here and spread them out over a longer period of time. I'll just have to wait and see how he feels.
I talked to Abi tonight. Daddy got home today and picked her up and she is at home with him. When I called she was making him play his 3rd game of Candy Land. Daddy is really tired because he has been driving home since 8:00am this morning and didn't get home until about 6:00pm. Hopefully he was able to get her off to bed so he can get some rest.
Well, I'm off for tonight. Will update tomorrow.
-Angela-
Anyway, I will see how he sleeps tonight before I decide if we are going to the clinic tomorrow. If he is up a lot it might be better to stay home and feed him here rather than drag him off to the clinic for 4 short meals when I can do 5 here and spread them out over a longer period of time. I'll just have to wait and see how he feels.
I talked to Abi tonight. Daddy got home today and picked her up and she is at home with him. When I called she was making him play his 3rd game of Candy Land. Daddy is really tired because he has been driving home since 8:00am this morning and didn't get home until about 6:00pm. Hopefully he was able to get her off to bed so he can get some rest.
Well, I'm off for tonight. Will update tomorrow.
-Angela-
Monday, March 16, 2009
Day Thirty Four
A good day today! Daniel took a total volume of 27.9 and this would have been much higher but we had a therapist on his 3rd feeding that tried something new with his drinking and got some air into his belly so we had to cut the 4th feeding short (only 2.3 ounces). Overall, he is doing wonderful and we will continue to increase his volume little by little. Our next hurdle will be to make sure he gains weight in the next 2 weeks. He lost a little this week and we expected it being his 1st full week with lots of "real" food. However, he cannot continue to lose weight so I'm asking for your thoughts and prayers on this one. Please let him gain weight next week!
I'll post again tomorrow. Hoping all is well with you!
-Angela-
I'll post again tomorrow. Hoping all is well with you!
-Angela-
Sunday, March 15, 2009
Days Thirty One, Thirty Two & Thirty Three
Sorry to all of you that read my blog each day for not posting. Eric is visiting this weekend and it is also my first weekend feeding Daniel 5 meals per day so I have been busy! Things are going great. Friday at clinic Daniel took in 24 oz total. They are happy with his progress and said that next week we will work on getting his volume up. Well, Daniel decided he didn't want to wait until next week to start so he got his volume up this weekend. On Saturday, he took a total volume of 31.6 oz for me and on Sunday his total volume was 35.8. Can you say "yea Daniel"! Tonight (Sunday), he will only need to be on the pump for 5 hours total. They aren't going to believe me when I go in tomorrow and tell them what his volume was. They will think that I didn't follow their rules. I did follow the rules with 1 exception which was very minor but Daniel wanted to eat and wanted to show Daddy how well he was eating. I was so excited to see him so excited when he did a good job and Daddy praised him.
Anyway, I'm sorry it took me this long to get an update on here. I will try to make sure that I get one on daily.
Finally, Kenny, sorry to scare you by not posting. I know how Brothers are and you are one of the best. Thanks for thinking of me and Daniel! I'll be sure to call you if I don't get to update so you know we are fine. And, tell Katy that I love her new ride.
-Angela-
Anyway, I'm sorry it took me this long to get an update on here. I will try to make sure that I get one on daily.
Finally, Kenny, sorry to scare you by not posting. I know how Brothers are and you are one of the best. Thanks for thinking of me and Daniel! I'll be sure to call you if I don't get to update so you know we are fine. And, tell Katy that I love her new ride.
-Angela-
Thursday, March 12, 2009
Day Thirty
Well, I have been in Richmond VA for 30 days. Daniel's progress has been amazing. Just think that 30 days ago he did not eat by spoon properly and was getting about 12 oz per day of solid food and some drink. As of today, he is taking the full spoon and his volume is up to 25.6 for a total today. I think he is doing wonderful based on the fact that he has not eaten all of those 30 days. He started out with a dry spoon and then onto a very tiny infant spoon and top that with the fact that I have not been able to feed him on weekends. This weekend will be my first at feeding him 5 meals per day. I'm going to be interested to see what his volume will be with me feeding him all 5 meals outside of the clinic atmosphere. Keep your fingers crossed for me that the volume doesn't go down. We want it to go up! He had a good day today but got really tired during his last meal and didn't quite take the volume that he usually does. This made us down a little but he rebounded when we came home and his volume went up for the 5th meal so this was good.
Eric is coming to visit this weekend (yea!). He is bringing us additional supplies that we will need. He will be getting here late Friday and will leave around noon on Monday. He's going to come to clinic to see 2 of Daniel's feeds. It will be great for him to see what the therapists do with Daniel. I don't know if I mentioned it before or not, but, we were originally supposed to graduate the program on 04/03. However, since we lost a week due to Daniel's ear infection, they have extended our stay until 04/10. So, we'll have to be in Richmond for an additonal week. I kinda figured this would happen since we missed the time.
Well, I gotta go. Hoping you all are well and I'll update tomorrow.
-Angela-
Eric is coming to visit this weekend (yea!). He is bringing us additional supplies that we will need. He will be getting here late Friday and will leave around noon on Monday. He's going to come to clinic to see 2 of Daniel's feeds. It will be great for him to see what the therapists do with Daniel. I don't know if I mentioned it before or not, but, we were originally supposed to graduate the program on 04/03. However, since we lost a week due to Daniel's ear infection, they have extended our stay until 04/10. So, we'll have to be in Richmond for an additonal week. I kinda figured this would happen since we missed the time.
Well, I gotta go. Hoping you all are well and I'll update tomorrow.
-Angela-
Wednesday, March 11, 2009
Day Twenty Nine
Today was another good day. I got to feed Daniel all 4 meals and a meal here at hotel tonight. I am still a little slower than the therapists so his total ounces today were 26.9. I will get better with practice and then we should see his volume go up. He is really liking eating but let me tell you, it is a lot of work. I'm sure that Abi is going to be extremely confused when we come home with our new schedule and all that needs to be done. However, I'm sure she will adjust and will just be glad that we are home.
Our next hurdle will be seeing how much volume Daniel's belly will accept. Please keep your fingers crossed and say some prayers for us that he will be able to tolerate all this. We pretty much have the technique down so now it is going to be up to Daniel's belly on what it will accept in volume. Any good thoughts you can send our way would be appreciated.
Will update more tomorrow.
-Angela-
Our next hurdle will be seeing how much volume Daniel's belly will accept. Please keep your fingers crossed and say some prayers for us that he will be able to tolerate all this. We pretty much have the technique down so now it is going to be up to Daniel's belly on what it will accept in volume. Any good thoughts you can send our way would be appreciated.
Will update more tomorrow.
-Angela-
Tuesday, March 10, 2009
Day Twenty Eight
I got to feed Daniel today! It was an overall good day. Daniel was in a great mood and that really helps with therapy. I got to sit in on all 4 meals and got to feed him 3 of them. It is a lot harder than it looks. Because of his aversion to having things in his mouth, you have to put the spoon in a certain way or he will gag. It looks easy when you watch a therapist that has 14 years experience but it isn't easy. They usually get about 5 oz per meal into him and on the first meal I only got 3 oz. By the 3rd and 4th meal I was doing better and averaged about 4.3 oz. I need more practice! Tomorrow I will feed him again and then for the rest of the week I will feed him an additional meal at night. Hopefully by the weekend I will be up to par on the placement of the spoon and I will feed him all meals at home. Total ounces that he consumed today was 23.7. Pretty good for my 1st day of feeding (if I do say myself).
Also, they gave me a list of foods I needed to get from the grocery tonight. Daniel and I made the trip after clinic. It was good to be buying canned food instead of baby food. I will get my first training tomorrow on how to puree everything up for Daniel. I hope all of you know that Daniel will come home on pureed food. It will be a little thicker than what baby food will be. Once we are home, we will work up on textures and will need to work with a therapist closer to home to work on his chewing skills. To tell you the truth, if we win the lottery, I would love to come back to Richmond for another 8 week program to teach him to chew. The therapists here are amazing compared to what I have worked with back home. If any of you have an extra $20,000 laying around, I would be glad to take it from you and get Daniel eating a happy meal from McDonald's, lol.
Well, I gotta get off here for tonight. I'll let you know how tomorrow goes.
-Angela-
Also, they gave me a list of foods I needed to get from the grocery tonight. Daniel and I made the trip after clinic. It was good to be buying canned food instead of baby food. I will get my first training tomorrow on how to puree everything up for Daniel. I hope all of you know that Daniel will come home on pureed food. It will be a little thicker than what baby food will be. Once we are home, we will work up on textures and will need to work with a therapist closer to home to work on his chewing skills. To tell you the truth, if we win the lottery, I would love to come back to Richmond for another 8 week program to teach him to chew. The therapists here are amazing compared to what I have worked with back home. If any of you have an extra $20,000 laying around, I would be glad to take it from you and get Daniel eating a happy meal from McDonald's, lol.
Well, I gotta get off here for tonight. I'll let you know how tomorrow goes.
-Angela-
Monday, March 9, 2009
Day Twenty Seven
Today was good! Daniel did well in all of his feedings. He took in a total of 24.3 ounces today. He is doing better with "big" bites of food and with his drinking. I met with the dietician today and got everything settled with his food. We are no longer just going to give him 1 food at a time. He will now get a protein (meat), vegetable and either a starch or a fruit all mixed together. As I said before, this will help him when he may not tolerate a certain food. If there is 1 food that he has a problem with, when introduced, the combination of foods may combat any bad side effects from that 1 food. They are all on board with this and we will start this tomorrow.
Also, I sat in on the meals today to observe. As of tomorrow, they will teach me how to place the spoon and the protocol in which I will have to follow while feeding him at night and on weekends. I'm looking forward to starting to feed Daniel and hope that all goes well. I think we may have a rough patch in the beginning because he's not familiar with me feeding him but once he trusts that I'm doing it the same as them, he will be fine and it may work better for him.
I talked to Abi tonight and she is doing great. She has adjusted well to all of this and her and daddy are doing just fine without me. I'm so glad that things are going well at home so I don't have to worry about that aspect.
I'm off to bed for tonight. Hoping that all of you are doing well.
-Angela-
Also, I sat in on the meals today to observe. As of tomorrow, they will teach me how to place the spoon and the protocol in which I will have to follow while feeding him at night and on weekends. I'm looking forward to starting to feed Daniel and hope that all goes well. I think we may have a rough patch in the beginning because he's not familiar with me feeding him but once he trusts that I'm doing it the same as them, he will be fine and it may work better for him.
I talked to Abi tonight and she is doing great. She has adjusted well to all of this and her and daddy are doing just fine without me. I'm so glad that things are going well at home so I don't have to worry about that aspect.
I'm off to bed for tonight. Hoping that all of you are doing well.
-Angela-
Sunday, March 8, 2009
Day Twenty Five & Six
It's the weekend so there isn't much to report. I wasn't allowed to feed Daniel again this weekend because I have to feed him at least 3 x during the week after we come home from clinic before they will let me feed him all weekend. They require that I do 1 meal at home 3x to make sure that I am placing the spoon correctly and Daniel isn't picking up any bad habits if I don't do it right before I can take over weekend feedings. I am due to train with the feeding therapists this week to do my evening meals so I can start feeding him this coming weekend. Please keep your fingers crossed that this happens because I really want to start working with Daniel.
Also, we struggled with drinking his juice this weekend. He needs to drink outside of meals to get all the fluids he will require. There are days that he does great with this and there are days that I can't get anything into him. He needs to be more consistent with his drinking so I am hoping that the therapists will have some ideas for me.
Otherwise, the weekend was great here. The weather was perfect and Daniel and I took advantage of it and got outside. It may be the last weekend that we have time to go out and do anything.
Finally, I want to wish my sister, Sheryl, a very happy birthday tomorrow (03/09). I love you Sis and I miss you all very much. I hope you have a happy day!
-Angela-
Also, we struggled with drinking his juice this weekend. He needs to drink outside of meals to get all the fluids he will require. There are days that he does great with this and there are days that I can't get anything into him. He needs to be more consistent with his drinking so I am hoping that the therapists will have some ideas for me.
Otherwise, the weekend was great here. The weather was perfect and Daniel and I took advantage of it and got outside. It may be the last weekend that we have time to go out and do anything.
Finally, I want to wish my sister, Sheryl, a very happy birthday tomorrow (03/09). I love you Sis and I miss you all very much. I hope you have a happy day!
-Angela-
Friday, March 6, 2009
Day Twenty Four
Today started off bad and became stellar! Daniel did not tolerate the food they gave him yesterday. He had peaches in the morning and carrots in the afternoon. When they work on getting volume into a child they usually only use 1 food. I had explained to them that I would not normally use a single food and would instead use multiple foods mixed together. Example, instead of just plain peaches, I would use peaches/banana/oatmeal. They didn't see the need to do this so they were using single foods. I believe that the peaches were what did him in and he just didn't tolerate the amount that they gave him. He started dumping last night and into the morning. I gave him some pedialyte to make up for the dumping and we went to the clinic anyway because I wanted them to see what it did to him. I took some of the food that I had been using at home and asked them to feed him using that instead of what they were used to using. The beginning was not good because he was still dumping and he was also gagging/wretching and even threw up a little. However, by the 3rd feed using my food he was getting back to normal and by the end of the day he still took 17.6 oz of food/drink during his meals. I think this is terrific based on how he was feeling this morning. I have also been working with him trying to get him to drink more of his special juice during the breaks from feeding and he did great today. In addition to the 17.6 oz of food/drink during the meals, he also took in about 14 oz of juice. So, the grand total for today is 31.6!!!!!! That means that he only needs to be on his pump 6.5 hours tonight.
Also, I am meeting with the nutritionalist on Monday morning and we are going to work on a diet where we don't use just 1 food. Daniel's meals will consist of a mixture of different foods so his body will be able to handle them. I just wish they would have listened to me in the first place. Oh well, who said Mom knows best???
Well, I'm off here for tonight. Tomorrow my goal is to see how much juice I can get Daniel to drink in one day. We need him to be consistent with the amounts so I need to work on this and see what he can do. Keep your fingers crossed that it's a lot!
-Angela-
Also, I am meeting with the nutritionalist on Monday morning and we are going to work on a diet where we don't use just 1 food. Daniel's meals will consist of a mixture of different foods so his body will be able to handle them. I just wish they would have listened to me in the first place. Oh well, who said Mom knows best???
Well, I'm off here for tonight. Tomorrow my goal is to see how much juice I can get Daniel to drink in one day. We need him to be consistent with the amounts so I need to work on this and see what he can do. Keep your fingers crossed that it's a lot!
-Angela-
Thursday, March 5, 2009
Day Twenty Three
Daniel had a good day today! Total of 19.68 oz of food/drink taken in during our 4 feedings and we had to cut the 4th feeding short because he had not gone to the bathroom and his belly was really distended and uncomfortable. He seemed to be fine at the clinic today but he isn't really acting like himself tonight. He seems to feel bad. He doesn't have a temperature but by looking at him you would think he has been sick. I'm not sure what is going on but I'm hoping that a good nights rest will take care of it. Please cross your fingers and say a little prayer for me that he isn't getting sick. We just cannot afford any more days away from the feeding clinic.
I'm doing okay. A little (maybe a lot) stressed because of all the sickness going around and all the unknown with this eating. I just want him to do good and I'm scared about all this. I just have to take each day one at a time but it's hard.
Abi is doing great. Playing and having a fine time with G&G Heyne, my mom, Eric and a few other friends. She seems to be taking all this fine.
Well, I gotta get to bed. I'll update you all tomorrow.
-Angela-
I'm doing okay. A little (maybe a lot) stressed because of all the sickness going around and all the unknown with this eating. I just want him to do good and I'm scared about all this. I just have to take each day one at a time but it's hard.
Abi is doing great. Playing and having a fine time with G&G Heyne, my mom, Eric and a few other friends. She seems to be taking all this fine.
Well, I gotta get to bed. I'll update you all tomorrow.
-Angela-
Wednesday, March 4, 2009
Day Twenty Two
Daniel did well today until the 3rd feeding. He is consistently taking about 5 oz of food/drink with each meal which would have put him at about 20 oz today. However, during the 3rd meal he kept telling the therapist that his lip hurt. She didn't see anything during the meal so she continued. After the meal was over, Daniel came running out and was pointing to his lip at which time we took a closer look and found that there was a blister on his lip. At this point he starts crying and the blister is getting bigger and bigger. A little while later the back of his ears start getting red and we know once again that he has gotten milk from somewhere. I know that it wasn't added to his food because they are very diligent after the last episode that Daniel's food is prepared 1st and there could not be cross contamination because everything is cleaned. Based on the fact that this episode was not nearly as bad as the last time (don't get me wrong, it was bad, just not as bad), we think that he just touched the milk to his lip which then permeated the skin and caused the reaction. The last time he got raised hives and itched and cried like a mad man. This time, there were no hives and the itching was not as bad. There was red ears, itching the g-tube, a rash and less crying. We gave him the massive dose of Benedryl and before you know it, he was sleeping so soundly that he was snoring up a storm.
No, we don't know how he got the milk. The only thing that we can come up with is that the straw from his juice cup somehow got contaminated. It would explain why the blister showed up on his lip (sorta like a bee sting). If the milk was on his straw and he laid it on his lip to drink it would have soaked into the skin causing the reaction. Did one of the other kids at the clinic pick up his drink when he set it down and maybe they took a drink from it? Did one of the other kids that eats yogurt and drinks milk have some on their hands and it got on a toy that Daniel was playing with? We just don't know. What I do know is that I need to be way more diligent in watching his drink and that everyone needs to be more diligent in washing their hands and such after having any milk products. The therapists are going to be sure that the kids are cleaned (hands and face) before they leave the feeding rooms to be sure that no one brings milk residue into the play room. We'll just have to wait and see what happens. This milk allergy stuff is really bad! Daniel seems to not have to just ingest it, he will have a reaction from just touching it - scary!
Anyway, with 3 feeds Daniel consumed 16.8 oz of food and is doing very well. Lucky for me, he doesn't hold any grudges and will go right back in and start over tomorrow. I'm hoping that the volume continues to increase. Not sure about whether I will be feeding him this weekend or not. We were supposed to talk about it this afternoon but that didn't happen with the allergy episode. I guess I'll find out tomorrow.
It's been a long day so I'll say goodbye or goodnight until tomorrow.
-Angela-
No, we don't know how he got the milk. The only thing that we can come up with is that the straw from his juice cup somehow got contaminated. It would explain why the blister showed up on his lip (sorta like a bee sting). If the milk was on his straw and he laid it on his lip to drink it would have soaked into the skin causing the reaction. Did one of the other kids at the clinic pick up his drink when he set it down and maybe they took a drink from it? Did one of the other kids that eats yogurt and drinks milk have some on their hands and it got on a toy that Daniel was playing with? We just don't know. What I do know is that I need to be way more diligent in watching his drink and that everyone needs to be more diligent in washing their hands and such after having any milk products. The therapists are going to be sure that the kids are cleaned (hands and face) before they leave the feeding rooms to be sure that no one brings milk residue into the play room. We'll just have to wait and see what happens. This milk allergy stuff is really bad! Daniel seems to not have to just ingest it, he will have a reaction from just touching it - scary!
Anyway, with 3 feeds Daniel consumed 16.8 oz of food and is doing very well. Lucky for me, he doesn't hold any grudges and will go right back in and start over tomorrow. I'm hoping that the volume continues to increase. Not sure about whether I will be feeding him this weekend or not. We were supposed to talk about it this afternoon but that didn't happen with the allergy episode. I guess I'll find out tomorrow.
It's been a long day so I'll say goodbye or goodnight until tomorrow.
-Angela-
Tuesday, March 3, 2009
Day Twenty One
We went back to the feeding clinic today - yea!!! There were no problems with eating and Daniel picked up right where he left off. His total volume for today was 16 oz which was not bad considering we had a long weekend off. They started the vanilla soy milk this morning and it went fine. His face told us that he didn't really care for the change in taste but no bad behavior like spitting it out or refusing it. However, we had a weekly conference today and we decided for the moment to go back to the special juice that he drinks. The reason for this is that I brought up the fact that we really need to work on Daniel's volume. The real test will be how much his stomach is going to handle. I'm concerned that we are working on drinking techniques when we know that he can consume an 8 oz juice box in no time flat. What we don't know is how much "food" he is going to be able to consume. We can't push volume and try a new drink at the same time so we think the best thing would be to push the volume to see exactly how much he is going to tolerate. He is still getting a drink with the meal but instead of 1 bite of food and 1 drink of juice, he is now going to get 3 bites of food and 1 drink of juice. If we worked on both volume of food and a new drink and Daniel starts to have a problem with going to the bathroom too much or throwing up, we won't know if its the soy milk or the volume of food. So, for now we will go up in volume of food and stick with the special juice we know he can already handle.
Daniel had a little problem acclimating himself back today. He didn't want me to leave his side and cried and cried whenever someone came to get him for an activity or feeding. Its always a hassle to have a weekend off and go back Monday to see him struggle with getting back into the routine of things. I had to take him to a meeting with me today because he absolutely threw a fit when I was leaving him. I'm hoping that this will get better as the week goes on. They frown upon you not leaving him but I wasn't sure what to do. I know the other parents understand but sometimes I am a little embarassed by his behavior.
Well, I gotta get off here and get myself to bed. I'll update tomorrow with how pushing the volume goes.
-Angela-
Daniel had a little problem acclimating himself back today. He didn't want me to leave his side and cried and cried whenever someone came to get him for an activity or feeding. Its always a hassle to have a weekend off and go back Monday to see him struggle with getting back into the routine of things. I had to take him to a meeting with me today because he absolutely threw a fit when I was leaving him. I'm hoping that this will get better as the week goes on. They frown upon you not leaving him but I wasn't sure what to do. I know the other parents understand but sometimes I am a little embarassed by his behavior.
Well, I gotta get off here and get myself to bed. I'll update tomorrow with how pushing the volume goes.
-Angela-
Monday, March 2, 2009
Day Twenty
We awoke to 9 inches of fresh snow today in Richmond VA. The city was basically shut down because they are not prepared for this type of storm. The wind also picked up this morning into the afternoon which made everything worse because of drifting snow. So, the hospital was closed and no therapy today. As of right this minute, the hospital is open tomorrow. However, the temperature is going down to 11 tonight and this is making a mess of ice and snow on the roads so they may change this. I'll just have to wait until tomorrow and see.
Daniel was extremely bored today. I did take him out in the snow for a few minutes today just because I couldn't think of anything else to do. He had a good time but we couldn't stay out there because I don't have our winter coats with us. He didn't want to come back in but all I had to say was "let's ride the elevator" and in he came.
Well, I'll update tomorrow and let you know if we go to therapy. Hoping we do!
-Angela-
Daniel was extremely bored today. I did take him out in the snow for a few minutes today just because I couldn't think of anything else to do. He had a good time but we couldn't stay out there because I don't have our winter coats with us. He didn't want to come back in but all I had to say was "let's ride the elevator" and in he came.
Well, I'll update tomorrow and let you know if we go to therapy. Hoping we do!
-Angela-
Sunday, March 1, 2009
Day Nineteen
Ok - Mother Nature is showing us her wrath. As I mentioned yesterday, this area has not seen more than a dusting of snow in 7 years. As of this moment, we have 5 inches of snow on the ground and it is not supposed to quit snowing until tomorrow morning! They were predicting 7+ inches earlier today but now are saying that it could be up to 12 inches by tomorrow morning. Can you believe that? Before we left home we did some research and talked to people that live here and found that the average temperature for this time of year is about 45-50. I didn't bring out winter coats, boots, hats, gloves - heck, I didn't even bring and ice scraper for my car windows. Tomorrow I might have 12 inches of crap on my car and I'm not sure how I'm going to get it off. Hopefully, the hotel will have a broom they will let me borrow. I'm going to go crazy! Needless to say, the feeding clinic will most likely be closed at least tomorrow and maybe even Tuesday. Not anything I can do about it but sit around and feel sorry for myself (oh, and ride the elevator 500,000 times per day). I sure wish I would have picked up a bag of chocolate while I was at the grocery. There is nothing better than sitting around eating chocolate when you are feeling sorry for yourself!
Well, I'm off to watch it snow some more. Hope all is well with you all at home. Missing being home with my little girl!
-Angela-
Well, I'm off to watch it snow some more. Hope all is well with you all at home. Missing being home with my little girl!
-Angela-
Saturday, February 28, 2009
Day Eighteen
The weekend - while I look forward to them when I am home, I do not look forward to them here. Those of you that know me well, know that I am all about getting things done. I am organized and motivated when there is something that needs to be accomplished. Well, I hate the weekends when I can't feed Daniel. I want to learn to feed him! The weekends are torture for me when all we do is sit around this increasingly shrinking hotel room. Even Daniel gets bored. His riding the elevator is what makes the day shorter for him. I don't even want to tell you how many times I rode the elevator today. Thank goodness they don't make me pay to ride it or I would have maxed my credit card out already. Hopefully by next weekend, I will be feeding him!
Also, the Richmond VA area has not had a major snowstorm in over 7 years. Well, guess what? You go it, a major snowstorm is headed our way. The people here at the hotel indicate that those that live here don't know how to handle more than an inch of snow and the city will be paralyzed if we get what they are calling for (4-6 inches). They don't have the road crews available to clean the roads and most likely everything will be shut down. If any of you have any pull with Mother Nature, please ask her to go a little more South so this snow misses us. I would be so grateful!
It's really late, so I am off to bed so I can get up and spend another day riding the elevator, lol.
-Angela-
P.S. If you send us a letter or package, please e-mail me at mommytoabi@hotmail.com to let me know that it was sent. I have gotten to know some of the staff here at the hotel and they have a lot of new people they are training so I want to be sure that they get it to me and it doesn't sit downstairs at the front desk. Thanks!
Also, the Richmond VA area has not had a major snowstorm in over 7 years. Well, guess what? You go it, a major snowstorm is headed our way. The people here at the hotel indicate that those that live here don't know how to handle more than an inch of snow and the city will be paralyzed if we get what they are calling for (4-6 inches). They don't have the road crews available to clean the roads and most likely everything will be shut down. If any of you have any pull with Mother Nature, please ask her to go a little more South so this snow misses us. I would be so grateful!
It's really late, so I am off to bed so I can get up and spend another day riding the elevator, lol.
-Angela-
P.S. If you send us a letter or package, please e-mail me at mommytoabi@hotmail.com to let me know that it was sent. I have gotten to know some of the staff here at the hotel and they have a lot of new people they are training so I want to be sure that they get it to me and it doesn't sit downstairs at the front desk. Thanks!
Friday, February 27, 2009
Day Seventeen
A great Friday! Daniel's volume was down a little bit (16.8 oz) but we are trying new foods and this morning he had mango. He was not real thrilled with mango so I knew after the 1st and 2nd feeds that his total for the day would be down. However, based on the fact that he didn't really care for the mango, he still did well. Adding his total by mouth during the feedings of 16.8 oz and 2 juice boxes today, he took in a total of 32.8 oz by mouth. So, he only needs to be tube fed for 6 hours tonight!!!! Since Daniel is doing so well, starting next week on Wednesday (I believe), I will get to sit in on the feedings and learn to properly place the spoon. Then, I will start to feed 1 meal when we get home for 3 days as training and if all is going well, I will get to do all his feeds next weekend.
Also, starting Monday, they are going to replace his special juice with vanilla soy milk. This soy milk has the same calories as his juice and we will be able to buy it at the grocery store. I will warn you all now that I doubt his volumes will be as high for the first few days when they try this because he doesn't like to drink anything other than his juice. I have tried this soy milk at home and he would not drink it for me. The feeding therapists have other techniques so I'm hoping they will be able to get him to drink it. And, I'm asking you all to cross your fingers that his body will tolerate it. It would be wonderful to get him drinking something that we can buy at the grocery store!
Abi is doing fine. She is home with Daddy for the weekend and ready to play with him all weekend long. She was home for the whole weekend last week and by the end of the weekend Eric said she wore him out. I thought this was hilarious because how does he think I feel after 24/7 with Abi and Daniel. Needless to say, there wasn't much sympathy on my end, lol.
Well, I'm off to bed.
-Angela-
Also, starting Monday, they are going to replace his special juice with vanilla soy milk. This soy milk has the same calories as his juice and we will be able to buy it at the grocery store. I will warn you all now that I doubt his volumes will be as high for the first few days when they try this because he doesn't like to drink anything other than his juice. I have tried this soy milk at home and he would not drink it for me. The feeding therapists have other techniques so I'm hoping they will be able to get him to drink it. And, I'm asking you all to cross your fingers that his body will tolerate it. It would be wonderful to get him drinking something that we can buy at the grocery store!
Abi is doing fine. She is home with Daddy for the weekend and ready to play with him all weekend long. She was home for the whole weekend last week and by the end of the weekend Eric said she wore him out. I thought this was hilarious because how does he think I feel after 24/7 with Abi and Daniel. Needless to say, there wasn't much sympathy on my end, lol.
Well, I'm off to bed.
-Angela-
Thursday, February 26, 2009
Day Sixteen
Another great day! Daniel is getting better and better with his tongue control and with the combination of eating and drinking. Now for the news - he ate/drank 19.1 oz total today. So he went from 7.9 to 13.5 to 19.1!!!! The therapists were a little worried that he was taking in so much and asked me if I wanted them to slow down. It was my decision. I thought about it and decided that we need to go for it. I told them we are never going to know if his little body will handle it if we don't try. We will continue to let him eat/drink what he wants until we see that there is a problem. He had no poopy effects or vomiting from today's feedings so we will just continue to see what he can handle. Based on what he is taking by mouth, we have been able to cut his tube feeding from 12 hours to 8 hours! Daniel is also starting to come out of his shell. He has made friends with his therapists and there is a nurse there that he absolutely loves. He thinks she is a hoot. He is a non-stop tornado in the play room. I told them that he better start eating a lot because he's burning off all the calories they put into him! He just seems to have so much energy and it's so great to see him like this.
Also, I talked with Abi tonight. She had a friend come over to visit and she told me they did crafts, played play-doh and had a fun time! I love when she tells me all about her day. She even told her friend that G&G Heyne have an extra bed so she could spend the night if she wanted to. I'm sure Grandma loves that Abi just invites people to spend the night, lol.
Finally, while I was on the phone with Abi she asked to talk with Daniel. You all know that Daniel doesn't talk but I put the phone to his ear. I heard her tell him "I miss you so much Daniel" and "I love you Daniel". He had a huge smile on his face the whole time! Talk about melting my heart. I can't wait to get home and give her a big hug. I'm so proud of the way she is handling this long, long separation from Mommy and Daniel.
Well, I'm off to bed. Will update tomorrow. Take Care!
-Angela-
Also, I talked with Abi tonight. She had a friend come over to visit and she told me they did crafts, played play-doh and had a fun time! I love when she tells me all about her day. She even told her friend that G&G Heyne have an extra bed so she could spend the night if she wanted to. I'm sure Grandma loves that Abi just invites people to spend the night, lol.
Finally, while I was on the phone with Abi she asked to talk with Daniel. You all know that Daniel doesn't talk but I put the phone to his ear. I heard her tell him "I miss you so much Daniel" and "I love you Daniel". He had a huge smile on his face the whole time! Talk about melting my heart. I can't wait to get home and give her a big hug. I'm so proud of the way she is handling this long, long separation from Mommy and Daniel.
Well, I'm off to bed. Will update tomorrow. Take Care!
-Angela-
Wednesday, February 25, 2009
Day Fifteen
Today was an amazing day! No ill effects from yesterday's allergy episode. He jumped in today right where he left off and did a stellar job. He is still working on tongue control with the therapists and is getting better and better at it. They have been using an infant spoon with Daniel and today decided to give a bigger spoon a try and Daniel did a great job with the bigger spoon. Yesterday he took a total of 7 oz of food/juice during his meals and today he took 13.5 oz. They were extremely pleased with Daniel today. I am bragging because I was so absolutely proud of him. However, I know that not every day will be like today. We are taking this one day at a time and I know that there will be some bad days to come but I'm just concentrating on today and it was a great day!
Talked to Abi tonight. She is doing fine! She spent the day with my mom (Mamaw) and she told me that they had a fun, fun, fun day. She said they played all day and she likes it when Mamaw comes to see her. When I called to say goodnight, she was sitting on Grandma Heyne's lap reading a story. It kinda made me sad because I miss her sitting on my lap! I'm just glad that she has adjusted to this long separation. I think she is doing better with it than I am. I miss her!
Well, I'm off here for tonight. Hoping you all are doing well and I'll update again tomorrow. Cross your fingers that tomorrow is a good day too!
-Angela-
Talked to Abi tonight. She is doing fine! She spent the day with my mom (Mamaw) and she told me that they had a fun, fun, fun day. She said they played all day and she likes it when Mamaw comes to see her. When I called to say goodnight, she was sitting on Grandma Heyne's lap reading a story. It kinda made me sad because I miss her sitting on my lap! I'm just glad that she has adjusted to this long separation. I think she is doing better with it than I am. I miss her!
Well, I'm off here for tonight. Hoping you all are doing well and I'll update again tomorrow. Cross your fingers that tomorrow is a good day too!
-Angela-
Tuesday, February 24, 2009
Day Fourteen
The day started off good but got a little off course today. I asked yesterday that they change the food they were giving Daniel during meals. They had been giving him strictly peaches because he likes them. However, he is starting to take about 3 oz each and every meal and with 4 meals per day he would be getting about 12 oz of peaches. There is nothing wrong with peaches for a normal digestive system but Daniel doesn't have a normal digestive system and peaches in big amounts can cause some unwanted side effects. So, we agreed to change his morning 2 meals to bananas and his 2 afternoon meals to sweet potatoes. Who would have thought that this would be a problem, right? Well, Daniel went in for his 1st feed and did great with bananas and drinking his juice with the special squeeze cup. Around the last 30 seconds of the meal, that I was watching on TV, I noticed that he was pulling on his g-tube. I casually mentioned to the person who watches the meal with me that I was going to have to look at it because Daniel never messes with his tube. It's just a part of his body that he has always had and he just never messes with it. When they bring Daniel out from the feeding room he is still pulling on the tube and starts to cry. I ask him if he needs to go potty and he says yes. I get his potty seat and off to the bathroom we go. He is crying more and more and I feel that maybe he has some air in his belly and I need to "vent" the g-tube. I ask the nurse to stay with him and I go get the diaper bag to get the syringe. By the time I get back he is crying harder and really pulling at his tube. I then notice that his ears are getting really red. I told the nurse that I need her to go check to see if they gave him milk - yes MILK! For those of you that don't know, Daniel is very allergic to milk and eggs. Off she goes and comes back to tell me that they tasted the juice and it is definitely NOT milk and proceed to ask me if he's allergic to bananas. I tell her no he's had them many times. At this point, Daniel is itching all over his body and is screaming in pain from the itching and hives are popping up everywhere. His ears are swelling too. I tell her to go get the feeding therapist. Cynthia comes in and I tell her that he's having a reaction to milk and they had to have given him some. She goes back out and comes back soon telling me that she talked with the person who prepares the food and that this person did use milk to thin out the bananas when she was pureeing them. At this point I can't believe what I am hearing. They are all very aware of Daniel's allergies but obviously the person that prepared the food was not diligent in reading all the necessary warnings on his chart. Daniel is screaming, itching, crying and I am mad as hell. The doc comes in and they give him a teaspoon of Benedryl. This doesn't do anything so they have to give him 2 more teaspoons. Daniel continues for about another 1/2 hour to itch like crazy and cry but finally the Benedryl kicks in and he calms down. Needless to say, the Benedryl made him extremely tired. Off to sleep he went for a long slumber. He awoke later no worse for the wear other than scratches from his finger nails on his chest, belly and legs from itching himself so bad. While mommy was holding the sleeping prince, the hospital director came to talk with me about what happened. I told her that now was not the time to talk with me because I was extremely pissed off and I'm pretty sure if she stayed to talk with me I would say some things she didn't want to hear. She took my word for it and told me to call for her when I felt ready to talk.
(Note, I'm not sure I should be starting a new paragraph here but to make it easier to read, I will).
Later, much later, I called everyone together and expressed my displeasure (without using the cuss words that I so badly wanted to use) at the situation. I explained that everyone was well aware of Daniel's allergies when we agreed to come and they assured me in the beginning that they could treat him and feed him without using milk or eggs. They explained what had happened and they explained to me the extra precautions that will be taken from here on out. They told me how extremely sorry they were that this happened and that they will guarantee me it will not happen again! I explained (somewhat nicely) that when I send Daniel back in that room, I want him to be safe. I expect him to be safe! I think they were deeply ashamed of themselves for this breach in my trust of their care for Daniel. With that, I told them I was done with talking about it and I wanted to get back to work. Daniel will be fine but let me tell you, Eric and I always wondered what would happen if Daniel got a drink of milk. Well, I now know and it is not pretty! The amount of milk they used to thin down the bananas was very small. I can't even imagine what would happen if he took a big drink. Mommy made a stop at CVS on the way home and now has a bottle of Benedryl in her purse in case anything like this would happen again, anywhere. I never want to see that happen to him again.
Off of that subject, the feedings today were absolutely fabulous. He is doing well and we will continue down this path for the rest of the week working on getting control of his tongue and eating/drinking together. They are very happy with where he is and I'm hoping that the rest of the week goes well.
Mommy is doing okay. The tension ran high today and I could have used a good cold beer when I got back to the hotel but I don't have any and they don't have a bar in this hotel so I settled for a diet mountain dew! If you are sending a care package to us, please include some liquor for mommy, okay?
Well, I gotta get off here. Will update tomorrow night. Hopefully, there is no drama and it will be a good day for Daniel.
-Angela-
(Note, I'm not sure I should be starting a new paragraph here but to make it easier to read, I will).
Later, much later, I called everyone together and expressed my displeasure (without using the cuss words that I so badly wanted to use) at the situation. I explained that everyone was well aware of Daniel's allergies when we agreed to come and they assured me in the beginning that they could treat him and feed him without using milk or eggs. They explained what had happened and they explained to me the extra precautions that will be taken from here on out. They told me how extremely sorry they were that this happened and that they will guarantee me it will not happen again! I explained (somewhat nicely) that when I send Daniel back in that room, I want him to be safe. I expect him to be safe! I think they were deeply ashamed of themselves for this breach in my trust of their care for Daniel. With that, I told them I was done with talking about it and I wanted to get back to work. Daniel will be fine but let me tell you, Eric and I always wondered what would happen if Daniel got a drink of milk. Well, I now know and it is not pretty! The amount of milk they used to thin down the bananas was very small. I can't even imagine what would happen if he took a big drink. Mommy made a stop at CVS on the way home and now has a bottle of Benedryl in her purse in case anything like this would happen again, anywhere. I never want to see that happen to him again.
Off of that subject, the feedings today were absolutely fabulous. He is doing well and we will continue down this path for the rest of the week working on getting control of his tongue and eating/drinking together. They are very happy with where he is and I'm hoping that the rest of the week goes well.
Mommy is doing okay. The tension ran high today and I could have used a good cold beer when I got back to the hotel but I don't have any and they don't have a bar in this hotel so I settled for a diet mountain dew! If you are sending a care package to us, please include some liquor for mommy, okay?
Well, I gotta get off here. Will update tomorrow night. Hopefully, there is no drama and it will be a good day for Daniel.
-Angela-
Monday, February 23, 2009
Day Thirteen
Today was a good day! We got back to the feeding clinic bright and early and other than a few tantrums when they came to get Daniel to take him back to the feeding room, he did great! He remembered everthing that he was taught previously. He is still having trouble with the tongue control but he is doing better. The gagging is down to a minimum and he is getting better at cleaning the spoon off on the 1st try. They introduced a squeeze bottle filled with juice today along with the food that he is eating. Daniel can drink thru a straw but he doesn't put the straw very far in his mouth. The squeeze bottle is used so the therapist can stick the straw in his cheek on either side of his mouth and ask him to put his lips around it tightly and suck. This gets the child used to having things all the way in the mouth instead of just using the tip of their lips. Once the straw is firmly in his cheek the therapist will squeeze so she can control how much is going into his mouth. This helps them from just taking tiny sips of juice and instead taking a significant amount. I was very pleased and proud of Daniel today in regards to the feeding portion.
At the clinic, Daniel also has 1/2 hour of recreation time. This means that a early childhood specialist will come get him and take him to the recreation room and play with him. Sometimes they play musical instruments, sometimes they do crafts and sometimes they just play with toys. Well, let me tell you, Daniel does not like being taken away from mommy. He threw a major (and I mean major) tantrum today when they came to get him. He got down on the floor and made a huge scene. They made him go anyway and he got over it but I was a little shocked at his behavior. He needs to do this because he is not used to being around anyone but me, Abi and Eric on a regular basis and it's time that he became accustomed to being around other people. I can understand his hesitation because in his short little life it always seems like when someone unknown comes and takes him somewhere that mommy isn't, they do bad things to him (like x-rays, shots, poking and prodding, and all the other bad stuff). It was hard to not let him just stay with me but I made him go. In the end it was okay but boy that screaming was an eye opener showing that his lungs are just fine!
Well, I'm off to bed. Will update more tomorrow.
-Angela-
At the clinic, Daniel also has 1/2 hour of recreation time. This means that a early childhood specialist will come get him and take him to the recreation room and play with him. Sometimes they play musical instruments, sometimes they do crafts and sometimes they just play with toys. Well, let me tell you, Daniel does not like being taken away from mommy. He threw a major (and I mean major) tantrum today when they came to get him. He got down on the floor and made a huge scene. They made him go anyway and he got over it but I was a little shocked at his behavior. He needs to do this because he is not used to being around anyone but me, Abi and Eric on a regular basis and it's time that he became accustomed to being around other people. I can understand his hesitation because in his short little life it always seems like when someone unknown comes and takes him somewhere that mommy isn't, they do bad things to him (like x-rays, shots, poking and prodding, and all the other bad stuff). It was hard to not let him just stay with me but I made him go. In the end it was okay but boy that screaming was an eye opener showing that his lungs are just fine!
Well, I'm off to bed. Will update more tomorrow.
-Angela-
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