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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-

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-