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.