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-