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!

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-

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-

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-

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-

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-

Day Twelve

Daniel continues to feel well today. He was quite the little pistol today as I think he is getting really bored so it was bother mommy every 1/2 hour to see if we could ride the elevator! He is back to himself so I am happy about that and anxious to get back to the feeding clinic tomorrow to start again. I won't be surprised if he throws a little fit about having to start the feeding therapy again tomorrow morning but at least I will know it will be normal 3 yr old behavior and not because something is wrong. It's always hard on Monday's to get back in the swing of things but tomorrow will probably be a little worse since we have been gone for almost a week. Who knows, maybe he will prove me wrong!

It was a gloomy day (gray, sprinkles & colder) here in Richmond VA but I heard that the weather is really cold and crappy back home so I guess I'm lucky on that front. By the end of the week it is supposed to be about 60 here so maybe we will be able to go out on the playground during our breaks at the hospital.

Abi is doing great! She spent the whole weekend with daddy and they had a great time. Daddy loaded a CandyLand game on the computer and she went to town learning how to use the computer. Daddy said she did a great job for the 1st time she has used a computer. She's back at G&G Heyne's house for a few days. I called a little while ago and they were watching Noggin (preschool cartoons) on TV before she went to bed. I'm sure that Grandpa Heyne loves that (hahahahaha).

Well, I gotta get to bed soon because morning will come before I know it and we need to be to the hospital bright and early. I'll let you know how tomorrow goes.

-Angela-

Day Eleven

Daniel is doing better today! No bad side effects from the antibiotic shots so I'm crossing my fingers that we are on the mend and will be back at the feeding clinic on Monday. We stuck around the hotel today to be sure that the bad side effects weren't going to return. It gets a little boring for both of us but we took many rides on the elevator and even walked up and down the steps a few times. Not much else going on here. The weather was pretty nice today about 50 out and lots of sun. I heard from Abi that it was snowing at home and cold. She told me she can't wait for Summer and I told her I agree!

Well, I'm off to bed. Hope you all have a nice weekend!

-Angela-

Day Ten

Off to the doctors first thing this morning to sit and wait for 2 hours to be seen...ugh! The doc looked at Daniel's ear and said he definitely needed a 3rd shot of antibiotic. The ear drum swelling is down and the infection is looking better but the ear is still red. The doc said if we didn't get the shot we would most likely be back next week to start treatment all over again. The first doc we saw on Tuesday said we should get the shot every other day so we got one Tuesday and one on Thursday. This doc saw no reason for us to wait until tomorrow to get the 3rd shot so we got it today. This should help Daniel be over all the side effects by Monday so we can return to the feeding clinic. Daniel's side effects from the shot yesterday were not nearly as bad as from the 1st shot so I am hoping that he won't get as bad this weekend as he was earlier in the week. He is doing good and I think is a little bored in this 2 room hotel suite. I don't know how many times we have taken a ride on the elevator and walked around the halls of this hotel but people probably think we are crazy!

I talked to Abi earlier and she is doing fine. Grandma's friend Marilyn came to visit today and they were playing play-doh when I called. To tell you the truth, I would have loved to been home watching Marilyn play play-doh with Abi, it must have been a sight, lol!

Thanks to everyone sending e-mails with words of encouragement for me and Daniel. This week has been truly a long week and I'm hoping to get right back in the saddle on Monday and start working on getting that full spoon in Daniel's mouth. For those of you that don't feel comfortable leaving a comment on the blog, you can send me an e-mail at mommytoabi@hotmail.com. I check my messages every night.

Take care and I'll update tomorrow on how the little man is doing.

-Angela-

Day Nine

Another day of no feeding clinic. Daniel had a really bad night last night. The adverse side effects from the antibiotic shot were bad to say the least. He was miserable and at one point I was pretty sure we were headed to the ER here in Richmond. I was able to keep the fluids going and in between the crying and wimpering (from Daniel, not me, lol), I was able to get him to drink a liter of pedialyte. This did the trick and he finally fell asleep at 3:30am only to wake up at 8:00am (not enough sleep for mommy). I took him to the doctor today and he got his 2nd shot of antibiotic so I'm not sure what we are in for tomorrow. I'm hoping that the side effects won't be as bad but we'll have to wait and see. Probably will not be at the feeding clinic tomorrow either as I have to take Daniel back to the doctor in the morning and have them look at his ear to see if he needs a 3rd shot or not. I called his gastro doc in Cincinnati last night and he would prefer that Daniel not get a 3rd shot if it is not absolutely necessary due to the chance of getting really dehydrated. I'm hoping that he won't need the shot and we have a nice long weekend to spend getting better and then resume our feeding therapy on Monday. Daniel is looking better so please cross your fingers for us that he effects of the 2nd shot are not as bad tomorrow.

I spoke with Abi a few minutes ago and she is doing great. Grandpa Heyne made a trip to the store to see what Valentine candy was on sale and bought her a heart full of candy. What little girl doesn't want a heart full of candy from Grandpa. She was absolutely cute! She told me it was the best candy he had ever gotten. I hope he bought more than one box and put some away for later!

I have received a couple of e-mails asking if we can receive mail and care packages here at the hotel. I checked with the front desk and we can. The address here is: Homewood Suites, Angela Heyne, 4100 Innslake Drive, Glen Allen, VA 23060. We will be here until around the 1st or 2nd week in April the way it stands now.

I hope you all are doing well. I know from talking to my parents, Abi, Eric and his parents that it is cold at home. Stay bundled up and warm. It is not really warm here either but at least it's warmer than back home! Take care and continue to keep Daniel in your thoughts.

-Angela-

Day Eight

Not a good day! We went to clinic because Daniel was acting fine. He did his first feeding and other than the cheek stretches on the left side he did great. However, by the 2nd feed he would hardly open his mouth and was crying and upset. We all agreed that it was not good to keep him there. Also, the antibiotic shot caused some unpleasant side effects so I need to be sure that he stays on the feeding pump and doesn't get dehydrated. I have to take him back tomorrow at 10:30am for his 2nd shot of antibiotics so we won't be at clinic tomorrow either. We have to wait and see how Friday goes. If he is still acting like there is something wrong, I have to take him for his 3rd shot on Saturday and we will go back on Monday and start again. I'm sad. This set back is going to cause us to remain in Richmond for a week longer than we anticipated. I don't want to! Another week of $$$ for the hotel, food, gas and other stuff. I miss Abigale! I just want to get on with this feeding, kwim? Please send some encouragement my way!

Well, I gotta get off here. Hoping you all are doing fine and I'll update tomorrow on how Daniel is feeling.

-Angela-

Day Seven

Well, day seven didn't happen! As you know from my post yesterday, Daniel was not himself during treatment. They thought that he might have had irritation on his throat and had that looked at but it looked good so we continued on. When Daniel went to bed last night (Monday), he was not sleeping well. He would cry out but when I went in to check on him he appeared to be asleep. At 10:00 he started crying so I went in and layed down with him and he just kept crying. About 10 minutes later he threw up all over the place. He continued to vomit 4 more times basically losing all the liquid I had put into him that day. He also kept hitting himself on the side of the head. He only slept about 2 hours total last night. At midnight, we made a trip to a 24 hr CVS to get some pedialyte for him and this morning I called the hospital. The referred us to a local pediatric clinic who took one look at Daniel'ls left ear and said that his ear drum was about to pop! He was in such pain. Daniel can't have 10 day antibiotics due to short gut so he has to get a shot instead. The doc here called my doc at home and they discussed what to do and it was decided on what antibiotic to use. Daniel got 1 shot today, he will need another shot on Thursday and he will get a 3rd shot on Saturday! He also got some ear drops for the pain. Unfortunately, Daniel can't have Tylenol or Motrim so he's going to have some pain until the infection is gone but hopefully it won't be as bad. Needless to say, we didn't make it to the clinic today. The doc said we can go back as soon as Daniel feels up to it. The therapist at the clinic says to play it by ear (no pun intended) and if Daniel isn't showing any pain tomorrow we can come then but if he is still not sleeping well and showing pain we should wait until Thursday because they don't want to associate any ear pain with eating. So, we'll have to wait and see if he feels better tomorrow or we not.

Speaking of ear infections, the docs say that they are not contagious but I'm not sure I believe that! Abi had an ear infection right before we left home, Andrew (another patient at the feeding clinic) was out 3 days last week with an ear infection, Ethan (another patient in the feeding clinic) has been out both Friday and Monday with an ear infection and they were out again today because Daniel and I ran into them at the doctors office where he was being re-checked today. Doesn't this seem awful coincidental to you?

Well, I need to put the ear drops in Daniel's ear so I'll update tomorrow to let you know if we went to the clinic or not.

-Angela-

Day Six

Daniel was not a happy camper early this morning. When we woke I told him we were going to see Cynthia and Carter (his feeding therapists) and he got really upset and started crying. I told him we had to go and he seemed to adjust but when we got there the 1st feeding went bad. He remembered all the excercises and other stuff but there was a lot of gagging. They asked that I have his throat checked by the doctor to make sure there wasn't any irritation. The doc checked and all was fine so they had to adjust the protocol a little. He was keeping his mouth open a little too long and they thought that was what was causing him to gag. They changed to procedure a little and told him to shut his mouth a little sooner than they had been doing and that seemed to do the trick. His 2nd, 3rd and 4th feedings went much better and the gagging got better and better by the end of the day. I talked with the team a little today (we will have a formal conference tomorrow) and they said that he is doing great! Most kids will take until the end of week 2 to even open their mouths so Daniel is ahead of the ballgame. They know that I am a data driven person so they told me that Daniel will most likely be working on his tongue control for the next week or so. Estimated time is that it will probably take him until he end of next week to get control of his tongue and clean the food off his spoon each and every time it is presented. Once he gets the hang of cleaning the spoon and control of his tongue, then they will work on volume of food. They need to get the technique down with him before they can present more food. This was good to know because I had no idea how hard it would be to watch him and wonder when he was going to get more food! It gave me a better understanding of all he needs to learn so then we can work on the volume of food.

Also, they told me that Monday's are always very hard on the kids. They had a weekend off because we aren't allowed to feed them and then they have to come back here and work again. So, I'll have to keep that in mind the next couple of weeks.

I'm doing fine. I didn't realize how hard this would be for me too but it is. I'll get adjusted but you all know that its hard for me to sit on the sidelines - kwim? I want to help but at this point, it would probably hinder Daniel's progress so I just need to sit back and watch and learn.

Abi is doing great! She got to go home and spend some time with just her and daddy. They had a great time and all went very well. Daddy said they had a great Valentine's day together and got to play lots of games and watch lots of movies together.

Well, I'm off to get Daniel to bed as he is exhausted. I'll update tomorrow. Please continue to keep Daniel in your thoughts and your fingers crossed for him.

-Angela-

Day Five

Today was good - Daniel got food (yea!). They are still doing all the facial excercises and have added a few tongue excercises too. They put a probe on his teeth and tap 3x and ask him to use his tongue to touch the probe. They alternate sides and this is to try to get control of his tongue. They are also still working on getting him to accept the full spoon in his mouth and he is still gagging a little. It gets better and better each time. Today they put food on the spoon and are trying to teach him that he has to clean the whole spoon off before he releases it. If he doesn't clean the whole spoon they re-present it to him and tell him that the whole spoon has to be cleaned of food before he releases. He is doing well. I don't get to feed him this weekend so he's going to have to be on his feeding pump a little more than usual. The reason for this is 2 fold. The first reason is that they want to see what he retains over a weekend. They want to go back in on Monday and see if he remembers the cues and what he is supposed to do. The second reason is that they don't want me to do things differently than what they are doing and thereby hinder his progress. I agree with both of their reasons and will be anxious to see how he does on Monday. I can tell you that this week was exhausting for Daniel. As the week progressed, you could see him getting more tired by the 4th meal of the day. Today, he was really tired by the 3rd meal and by the 4th meal his head was hanging and his eyes were really droopy. This is a kid that doesn't nap during the day but fell asleep in the car on the way back to the hotel. The therapist said that even though they are working with his mouth, it is still hard on him. These are things that he has never done before and it can really tire him out.

The progress we made this week is amazing! These are the bullet points:

1) He would not allow anything but the tip of the spoon in his mouth. He is now taking the full spoon in his mouth and only gagging a little.

2) He would never let anyone touch his teeth. He is now letting them put their fingers in his mouth and moving the finger along every tooth in his mouth as well as allowing them to put their finger clear in the back of his mouth and pulling out on his cheek to stretch the cheek muscles.

3) He would not open his mouth for anyone. Now all you have to do is say "how big can you open your mouth" and he will open as wide as the grand canyon.

There are probably more but you get the picture. This week was great for Daniel!

Well, I'm off to get some things done before tomorrow. Daniel and I have the weekend off from working with his mouth so I probably won't update until Monday after therapy. It's supposed to rain here tomorrow so most likely we will hang out at the hotel. Sunday is supposed to be half way decent so maybe we'll find a park, musuem or mall to go to.

Take care!

-Angela-

Day Four

Today was mostly the same as yesterday. The only difference is that Daniel is taking the whole spoon in his mouth but is humping up the back of his tongue which cuts of the back of the throat and causes him to gag. To remedy this, they put the whole spoon in his mouth and then press down on the tongue and hold it for a count of 3. At the 1st session he gagged almost every time they put the spoon in his mouth. By the time they got to the 4th feeding, he only gagged once. They also did his facial excercises and he is doing wonderful with those. Tomorrow his therapist will decide whether he is ready to have food on the spoon. I am excited and hope that he can but I won't be disappointed if she doesn't feel he is ready because I can see the progress he has made the last 4 days. It is unbelievable that they can put their fingers (gloved, of course) in his mouth all the way to the back of his mouth to feel his molars. Just 4 days ago they couldn't get their fingers past the front 2 teeth. He just lets them do what they want which makes me very proud of him. He is so excited when they tell him how good he is doing!

I hear that you all in Ohio got bad winds last night and that there are lots of trees and damage. I hope you all are okay. We had about 40 mph winds here today and they call it "Red Flag". The weather forcaster said "we are going to have a red flag day" and I thought, what the crap is that. Well that's what they call high winds! The weather here is nice and warm but is supposed to cool down this weekend with rain (yuck)!

Abi is doing great. She is eating G&G Heyne out of house and home. Grandpa says he's going to have to make 2 trips to the grocery per week at the rate she eats. I just hope they aren't keeping a tab for her room service because I don't think I can afford it. My mom came to visit her yesterday and Abi had her tape a video and send to me via my cell phone. Abi told us in the video how much she misses us and how much she loves me and Daniel. Talk about getting teary eyed! It was wonderful!

Well, gotta get going and get my paperwork done for tomorrow - almost 1 week under our belts.

-Angela-

Day Three

Today was about the same as yesterday. More facial excercises and "dry" spoon feeding. Daniel did better and better each time. He is still gagging some when they place the spoon clear into his mouth so we may have to do the same thing tomorrow. He may not get "real" food on the spoon until Friday. They will see how he does tomorrow and decide if he is ready tomorrow or not until Friday.

Let me tell you that it is frustrating with a capital "F" to watch them not feed him real food. I told the therapist today that it is very hard for me to watch them work with him but not give him food. It took me so long to get him eating that I have a hard time with not being able to put food on the spoon. She completely understands where I am coming from and she understands that I see this as going backwards instead of forward. However, she explained that sometimes it takes kids 3 weeks or more before they are ready for food and Daniel will most likely be ready by the end of the week. She said that he is so far advanced in his skills than most of the kids that come and he is doing great. It's hard for me to see that because I worked so hard with him. I also have a hard time not being involved and just watching. I want to work with him! They don't want me doing anything with him until at least this weekend because they want to get him as far as possible before they show me what to do over the weekend. It kills me not to be working with him at night! Although, she told me I should just enjoy this break of working with him because there is a lot of things I'm going to have to do later. I guess she's right, it's just hard!

Well, I'm off to get Daniel ready for bed and spend a little down time to clear my mind.

Hoping you all are doing fine!

-Angela-

Day Two

Well, today started out bad. Daniel has never been fed by anyone other than me and my mom. He did well yesterday with the 1 feeding the therapist did but today he wasn't as happy. He threw a big fit when she came to get him and cried during most of the 1st feeding (note, they call it a feeding but he didn't get any food -- I'll explain later in this post). He kept pointing to me as we were walking back to let me know that he wanted me to feed him. I'm not allowed and have to just walk him back, put him in the chair and leave the room. I then watch from the viewing room. They didn't get much done and when the timer went off they brought him back to me. I am lucky that Daniel is old enough that I can talk with him and in a way scold him. I took him aside to a quiet place and explained that he needs to let Cynthia (the therapist) work with him. I told him that she is a nice person and wants to play with him and feed him. I also told him that he can't cry for her. He sniffled a little during our "talk" but seemed to understand. The 2nd feeding, he started to cry when we walked back to the room and I said "Daniel, remember what we talked about, be nice to Cynthia and show her how you can open your mouth and eat". Well, by the time I got back to the viewing room, he had stopped crying and was fine with her. Now I'll explain the feeding. They call every session a feeding whether he gets food or not. Today and probaby tomorrow, he won't actually get any food on the spoon. They work with him for 10 minutes on facial excercises to increase the muscles in his face and then they work with him for 10 minutes putting a "dry" spoon (meaning no food on it) in his mouth. He let her do all the excercises where she massaged his face and also let her put a finger in his mouth. When the "dry" spoon came he did as well as expected. They presented the spoon 10x in the 2nd feeding and put the whole spoon in his mouth. His tongue doesn't know what to do so it tends to try to push the spoon out which causes him to gag. He gagged about 6x the 2nd feeding. By the 3rd feeding he didn't cry at all and gagged about 4x. By the 4th feeding he actually pushed me out of the room and only gagged 2x. They were very happy with his progress. The funniest thing was watching him be presented with a "dry" spoon. The therapist says "open wide and take a big bite" and then she puts the spoon in his mouth. Well, he looked at her like "are you crazy lady, there isn't any food on that spoon"! It was hilarious to watch his facial expressions. I'm not sure what tomorrow holds but I'll update again tomorrow.

Mommy is doing fine. The day is exhausting by the end and there is lots to learn but they all say that he is doing well. I'll just hold onto that! They told me there will be bad days and I know there will but I'm loving the good ones. I can't wait for them to start introducing food on a full spoon in his mouth.

-Angela-

Day One

Today went great! The first day I was to feed Daniel 3 meals exactly as I do at home. The first meal was 3 different foods (all very runny -- which Daniel does not like). We had pears and applesauce all different textures. He wasn't really into the runny stuff that would fall off the spoon. The feeding therapist was extremely happy with where Daniel is right now. We then left the clinic for a while to take Daddy to the airport so he could catch his flight home. Daniel and I returned to the clinic and I fed him again but this time we added oatmeal to sweet potatoes and peas to make it thicker and we pureed some canned peaches to what they call a "gritty" texture which is a little more advanced than the stage 2 baby food he is used to but less texture than the stage 3 that has chunks in it. He loved the peaches. We did those first and he had no problems and didn't even try to spit back out the advanced texture. In fact, he liked those so well that he kept pointing that he wanted more even when we had to move onto the other foods. He also fed himself a few bites which was exciting for the therapist. Usually they would have me do 1 more feed but they decided that he did so well that they didn't need to gather any more information from me feeding him that on his 3rd meal today the feeding therapist (Cynthia) fed him. I think he was a little shocked when I took him into the room and left. He didn't know what to think. They have a video camera set up so I move out to a viewing area and watch the therapist feed him. He wouldn't acknowledge the therapist, wouldn't even look at her but he let her feed him and that is all she wanted. Normally, I would feed him again tomorrow. However, they feel that he's up to the challenge so we will just start what will become the normal program tomorrow. He will be fed 4x tomorrow by the therapist who will work with him to eat more volume and open his mouth wider to accept the spoon. I'll update again tomorrow with what they do and how he does.

There are 3 other kids in the program right now but they are all younger than Daniel (around 2). He is not keen on getting to know any of them yet. I think they all think he is very stuck up! I explained to the other moms that Daniel is not used to being around other kids and it may take him a while to warm up to them. Other than Abi, Daniel has not had any playmates. I hope that he overcomes whatever fear he has of the other kids and will join in the fun. I guess we'll have to wait and see.

Abi is doing fine. I talk with her each night and she has a calendar marked with the day we are supposed to come home and is keeping track of the days. I miss her and she lets me know each night that she misses me too. But, she is having a good time with G&G Heyne and Daddy got home today so he'll keep her busy too.

Well, I'm mentally exhausted after all the information we got today so I'm off to read over paperwork and then get ready for bed.

-Angela-

We are here!

We made it to Richmond, VA last night. We are checked in to the hotel that Daniel and I will call home for the next 8 weeks. The place is nice. The 1 bedroom is small but it will work for Daniel and I. Daniel has explored every inch of the rooms. We had one snag. The hotel general manager promised a full size crib. However, when we arrived it was not full size. It was a porta-crib which was no bigger than a small play-n-pack. Needless to say, Daniel was not going to be able to sleep in it for 8 weeks. So, off to find a Walmart today. We were able to get him a toddler bed. This will be his first experience with a "big boy" bed. We will have to see how it goes but really had no choice. The cribs were all over $100 and we had to buy a mattress too. The toddler bed was about 1/2 that so we opted for the toddler bed. Just one more expense that wasn't counted on but I guess if this is the worst thing that happens to us while we are here, it isn't that bad.

Anyway, we are to be at Children's Hospial at 8 am tomorrow. I'm not sure what all will happen on the first day but I'm sure we will meet the team and they will want to watch Daniel eat to get a feel on what needs to happen from here. I'll update again tomorrow to let you all know how things went. For tonight, it's time to get Daniels jammies on and start getting ready for bed.

By the way, I also want to update that Abi is doing fine. I have talked with her each day and she says she is having fun and is beating Grandma Heyne at all the games they are playing. She hasn't gotten upset and that makes me happy. Daddy will be flying home tomorrow and will see her tomorrow. She will be glad to see him.

-Angela-

The first hard part done....

The first hard part is done. Abigale went to G&G Heyne's house today. I took her over this morning because I thought it would be too hard to take her over in the evening close the bed time. I have really talked up her staying with G&G Heyne and all the new stuff that they have for her. I scoured the dollar stores in the weeks leading up to today and found puzzles, coloring books, stuffed dogs, stickers and anything else I thought she would like and left them for her to find and gave G&G a bag with stuff so when she has a bad day they can rummage through and find something that will make her happy. She is soooooooooooo into dogs right now. She loves anything that has dogs so I got as many dog things as I could find. I also splurged on Wednesday and got her the new Space Buddies movie. She has all the other Air Buddies series and she will watch it over and over and over and over so I thought she would like this one too. She didn't get upset or anything! She gave me hugs and kisses and told me she would see me soon. Now, I didn't get upset in front of her but let me tell you that the water works started when driving away. I'm going to miss that little girl! She is such a trooper. I know that she has no idea how long 8 weeks will be and I think she will have some bad days but for the most part she will do fine. I'm just glad that Eric's parents are here to take care of her full time while he is at work. My mom will be here on her days off work to take care of Abigale too. So, she will be totally spoiled by both sets of grandparents by the time I come home!

Well, I gotta finish packing as we leave bright and early tomorrow morning. Wish us luck!

-Angela-

It's almost time....

Well, it's almost time to go. We had a bit of a "glitch" this week and I won't bore you with all the details but lets say that it was a $9,000 "glitch" and not good for us. However, I was able to work some magic and got the situation resolved so we are still on track. Daniel will begin his journey on Monday starting at 8:00am. I have gotten calls from all the people that will be involved in his care during our 8 week stay in Richmond and am very impressed. The people I have talked to are so very friendly and are ready to tackle Daniel's eating by mouth. While I am so excited to go and for this new challenge for Daniel, I am also very sad. I don't want to leave my little girl. I don't know how I am going to be away from my sunshine Abigale. When things are bad, she is the one who lifts my spirits. I need her! Alas, I know I have to go so I have to do this but there is no doubt that I am going to miss her. I know she will be in good hands with G&G Heyne and daddy.

Well, I'm off to continue packing for Daniel and I for an 8 week stay. Please check back for how Daniel is doing. As I said, I'm going to try to update each day.

-Angela-

P.S. If you could keep your fingers crossed for Daniel too. I think he is going to do wonderful but it never hurts to have other people rooting for him too.