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-