Sunday, August 31, 2008

We are finally home!!!

We made it home yesterday afternoon around 4. It is so nice to be back home where we can sleep in our own beds. I think that Peyton was glad to be home also. He ran all over the home just laughing. He then pulled my mother back to his room so that she could open the door for him to run all around his room. We had a great evening just relaxing around the house with daddy. Peyton went to bed early because he did not get a nap (he does not sleep in the car), which allowed me to go to bed early. We started back with our eating today and of course Peyton was going to try me again. He is going to learn that mommy is not going to give in. Later in the day was better then the morning meal. We have already found some new toys that are just for meal time. Tomorrow I will begin teaching Mrs. Pat how to feed Peyton then my mother will also help once I go back to work. I will be back in the classroom on Tuesday (Peyton's 3rd Birthday). I am working on a small get together for Saturday to celebrate his birthday. There is nothing like planning a birthday party at the last minute. Shame on me!!!

Thursday, August 28, 2008

What a rollercoster ride!

Sorry that I have not posted in several days. I have typed up an update several time but the Internet connection has not been good so of course I lost them.
Last weekend I fed Peyton here at RMH and he did very well for me. We had no big problems. Monday was back to school and again he did very well for us. On Tuesday Peyton decided to start trying us. I tried feeding him the first three time and he did not eat much, only about 1 oz of food and about the same for the drink. He did a little better for my mother the fourth meal. Yesterday was not a good day either. His first meal (25 min) he did not eat one bite! The second meal he ate about 2 oz of food and about 1 oz of fluid. His third meal he once again decided to have a stand off and took not one bite. His fourth meal he ate a little but not much. These day are not easy for me. I thought that today was going to be a good day. He woke up all on his very own and was very happy. We got to school and for his first meal my mother fed him so that I could meet with another mom about the program. He ate very little for her. His second meal I fed him and he ate very little again. His third and fourth meals my mother once again fed and he once again did not eat ONE BITE!!! These day are not easy for my mother and I but we are going to win! Everyone at OCH is glad that he is doing this so they can help walk us though these meals. They say that this behavior is not uncommon but that it usually happens in the second or third week of school not the last week. Tomorrow will be our last day at eating school. They are going to give us all the info we need to go home and continue what we are doing here. We will be keeping in touch with them through this process of learning to eat more. If need be we will come back in the future for more. We are hoping that we can do as much as possible at home.

Friends at Ronald McDonald

We have made some great friends here at RMH. There are a few families from the east Tx area that we hope to keep in touch with. Peyton makes friends with just about anyone he sees but their are a few that are very special that work and volunteer here at RMHD. In the photo above are the volunteers for Tuesday nights and Mrs. Norma the house manager that lives here at the house. Peyton really just fell in love with these ladies. They are from left to right Mrs. Tiffany, Mrs. Caroline holding Peyton, Ms. Margaret, Mrs. Norma (Nina) and Ms. Melissa. These ladies played with Peyton every Tuesday night. We hope to be able to keep in touch with them.

Saturday, August 23, 2008

Dallas Cowboy's Game

On our way to the Game!!!
Thanks Mrs. Linda for the tickets. She loved little man.
Tired little boy!

Playing at OCH

What a busy day yesterday was!

Friday was a very busy day for us. While at eating school Peyton did very well. I feed him his two morning meals and my mother feed him his two afternoon meals. He did very well for both of us. During his morning break we went outside on the play ground to play while it was still nice out. He had a blast! He climbed the stairs to the slide all by himself and then slid all by himself too. When it was time for nap time, well Peyton had other plans. He really needed a nap because we were going to have a very busy night. He ended up falling asleep in the car on the was back to The Ronald McDonald House so he only had about a 30 min. nap.
Friday Night we were off to the Cowboy game. A family that lives here in the Dallas area brought 15 luxury suite ticket to the RMH for some of the families. We were one of the lucky families. They picked us up in a small bus and took us to the game. When we got to the stadium they escorted us to the VIP entrance and dropped us off. When we got the the suite the couple was there to enjoy the game with us. There was all the food and drinks that we wanted. Then they bought two of the Dallas Cowboy Cheerleaders into our suite and we all got to get our pictures taken with them. It was so much fun. This same couple did the same thing with a Dallas Stars game back in 05 while Peyton was still in the NICU and we were able to go to that game also. They remembered us and they were so excited to see Peyton. She told me that Peyton has been on her prayer list since that Stars game. Peyton got to run all over the suite and he had the best time. He finally crashed with about 5 min. left in the game.

Thursday, August 21, 2008

What a Great day!!

Today Peyton blew us away with his drinking. He drank 2 to 3 ounces of carnation instant breakfast three times today. We were all amazed!! He continues to do very well with his eating too. He is eating 3 or so ounces of pureed foods each meal and not really giving us any problems. I just can not say enough about how great this program is at Our Children's House at Baylor!! Today I did his morning feeds and my mother started feeding this afternoon. We will be doing all of his feeds now with the therapist in watching and giving us tips.

Wednesday, August 20, 2008

Doing great with mom feeding!

Peyton continues to do very well. He is eating around 3 ounces of pureed food at each of his four meals and drinks about 1 ounce from his special cup each meal. He is eating just about all of his bites. This is great!! Today I began feeding him at his afternoon meal times. He did very well for me. I am expecting him to try me at anytime. Everyone has told me to expect it. We will just have to see how long it takes. We are trying new foods almost daily and so far he is excepting everything. Today he ate yogurt, cheese soup, lasagna and banana pudding and to drink he had carnation instant breakfast. This afternoon the dietitian weighed Peyton and we were able to wean one of his tube feeding down some. Everyone seems to be very pleased with his progress. I know we are!!!
Tomorrow I think in ST they are going to work with introducing a little bit of texture. They are going to try some yogurt that has a little fruit and cereal in it. That will be interesting. I hope he does well. I will soon be able to go sit in on this ST and OT sections so that I can continue to work with some of the things when we get home. I am also going to see about getting him into another therapy place at home that will continue to work with him weekly.

Monday, August 18, 2008

Week 3 of eating school

On Friday we started going into the room with Peyton while they feed so that we can see the technique that we have to use. Peyton was excited that we get to go. Today they started with the drinking again in ST. Then this afternoon he had to drink during his feeding times. The first feeding this afternoon was not so good. He took his first few bites with no problem, then when it was time to drink it went down hill. He threw a fit for about 20 minutes, until the timer went off, without taking one drink. He would not take the bribing with toys, movies or bubbles. That was the hardest 20 minutes for me. All I could do was sit there and ignore and not make eye contact. I thought that the timer was never going to go off. When it finally did go off he was able to get out of his chair but I could not hold him for a few minutes. That was SO hard!! All I wanted to do was pick him up and comfort him.
I was so dreading his next feed. During his second feed this afternoon things went much smoother. He took all of his bites and he even took all his drinks. We were all so proud of him and we let him know it! He ate over 3 ounces and drank 15 cc's of his formula thickened with simply thick. Tomorrow he will be expected to drink in all of four of his feeds. All of his therapist say that he is doing very well. They all LOVE HIM!!!

Saturday, August 16, 2008

Peyton has had a great week at eating school. By the end of the week he was eating 2 to 3 ounces four times a day. On Friday he had a swallow study over at Baylor Medical Center just to make sure that everything is going down correctly. He did very well. It was decided that for now we will be thickening his fluids to the consistency of nectar or store bought chocolate milk. He will start working on drinking again on Monday. I am very excited about his progress with his eating. This week he will start trying more foods like......lasagna, mac and cheese and others that are all pured. We are not doing much this weekend other then relax. I hope that you all have a great weekend.

Wednesday, August 13, 2008

Making great progress!

Peyton is making great progress. He just amazes me. This week we have been eating more bites of food. He is now up to three bites of food and one dry spoon. Today we added cheese soup to his menu, so we are now eating 4 different foods. Today was a great day for Peyton, three of his meals he ate about 2 ounces and the fourth meal he at 3 ounces. WOW!!! Today in OT he played with mac and cheese, they play each day with some kind of food. They also work on climbing stairs and they swing in the therapy gym. In ST they are working on him excepting different kinds of food and drinking from different cups. Friday we are going to meet with our dietitian to get a current weight and see about weaning off of some of his formula. How exciting!

Tuesday, August 12, 2008

Back to eating school

We had a great weekend but now it is back to school. Peyton continues to do very well in eating school. Yesterday started taking bigger bites but not full bites yet. He ate almost 1/2 an ounce of food each of the 4 times he was fed. Today they are going to try a cereal to go along with his yogurt and soup. The plan is to be able to puree anything that we eat at home for him to eat, then be able to get away from having to puree his foods.

Sunday, August 10, 2008

Pictures of our Zoo trip

We had a great time!!!

Tired Peyton!!!!!

Must be nice to just relax and have no worries!

First Week Finished

Peytons first week of eating school went very well. It was much better then I thought. He is excepting his bites and he is learning good eating technique. He tried many new things this week and took them all with out a problem....tomato soup, chicken soup, strawberry yogurt and butterscotch pudding. All of his feeding this week were 3 dry spoons followed by 1 spoon dipped in the food. This next week I think that they will be adding more food to his feeding.
Yesterday Andy, Peyton and I went to the Ft. Worth Zoo. We had a nice time. There were lots of people there and it was very HOT! This was Peyton's first time to visit a zoo. He liked making all the animal sounds. Some of the animals were very active. It was fun to watch them. I would have loved to have taken of the train, but I decided that Peyton would have probably screamed the whole way. We will have to go again and ride the train. I will post pictures of our zoo trip later today.
Andy headed back home today. He has to go back to work tomorrow. He will come again when he gets a day off.

Friday, August 8, 2008

Day 4 of eating school

Sorry that I did not post last night. Peyton had a good day at school yesterday. He ate all his bites. His menu was both tomato soup and chicken soup. In ST they explored with strawberry yogurt and he did well, so that will be on his menu for today. In OT they explored with more chocolate pudding, rice, beans and blocks.

Wednesday, August 6, 2008

Playing at Ronald McDonalds

This afternoon we went and played out on the playground at the Ronald McDonald House. Peyton had a great time. The weather was nice...only 95 not 105 like the rest of the week.

Day 3 of eating school

This morning Peyton did very well with taking all his bites. Every fourth bite had tomato soup on it. In Occupational Therapy (OT) one of the things they worked with was chocolate pudding. He had it everywhere... face, hair and even put some in his mouth. In Speech Therapy (ST) they tried chicken soup out. He seemed to like it so that will be on his menu for tomorrow. This afternoon they saw the real Peyton.......(I'm not going to do it). The first few bites were ok then the fits started. They do active ignoring while they are feeding. I am going to have to work on this!!! One of his fits went on for eight minutes then he finally took a bite and got to play again. He thought he was going to get his way but.....they showed him. Overall he once again had a very good day.

Tuesday, August 5, 2008

Therapy Dogs

Tonight the Heart of Texas Therapy Dogs came to Ronald McDonald's to visit. Peyton had a great time petting on them and running after them while other kids were walking them. Here are a few pictures.

Day 2 of eating school

Today was another good day for Peyton. He did very well with closing his lips around the spoon today. Today he wanted to play with cars while they were working with the spoon, so as long as he took his bites he could play. When he did not take his bites the cars were taken away. I think he only had the cars taken away 1 time. Today in his speech therapy he took bits of tomato soup. That will be on his menu for tomorrow again. I am just amazed at how well he is doing.
Peyton also had a follow-up Dr. appt with his ENT, Dr. McClay,and everything looks great. They did another hearing test today and everything was normal. That was a chore. He did not like the test. I had to sit in the sound proof booth with him during the test. There is nothing hard about it, it was just something different. He decided he was going to hold his hands over his ears halfway though the test. That made it a lot harder.

Monday, August 4, 2008

Our first day of eating school.

Today was our big day! It went much better then I thought. Today they worked on getting Peyton to except a dry spoon being in his mouth. As long as he was "taking bits" he was allowed to watch an Seame Street ABC DVD that he loved. If he did not take a bit after telling him twice then the movie was turned off until he did take a bite. Each time he took a bit they gave him big praise!!! To my surprise we did not have to change clothes at all today. They all said that he did great. Tomorrow they are going to work on him closing his lips around the spoon. I am hoping that tomorrow will be as successful as today.

Sunday, August 3, 2008

We made it to Dallas

We made it to Ronald McDonald House safely this afternoon. Mom and I unpacked our bags while Peyton watched one of his Praise Baby DVDs. We are settled into our home away from home for the month. The dinner tonight was delicious....chicken spaghetti. We will have to settle in for the night in just a few hour because we have to be at Our Children's House at 8 in the morning. My little Peyton is usually a late sleeper so that means he must go to bed a lot earlier. Well I must get off here and see where my mother and Peyton are. I will let you all know how tomorrow goes. I am taking a bag of extra of clothes with us as I think Peyton will not come home in what he wears in the morning.

Leaving in a few hours

Well we will be leaving in just a few hours for Dallas. Andy has decided that he needs to stay here for a few days and get some things around the house finished. He will come up at the end of the week for a few days. My mother will be going with us today and be staying for the 4 weeks. You don't really realize how much you need for a month until you pack. Peyton has LOTS of stuff we must take.....5 cases of formula, case of bags for his pump, diapers, things to keep him occupied and the list goes on........ I must go so that I can finish packing.

Saturday, August 2, 2008

Getting ready for Dallas

Well we will be leaving for Dallas tomorrow sometime. Peyton and I will be gone all month. Andy is going with us for the first week then he will come home to take care of the house and go to work. My mother will be coming up when Andy come home. We will be staying at the Ronald McDonald House, our home away from home. We have to be at Our Children's House at Baylor on Monday morning at 8 and will stay until 4. We will be there five days a week for four weeks. Peyton's little world is going to be turned upside down. They will attempt to feed him 4 times a day and when they are not feeding him he will be in different therapies. Hopefully when we come home after four weeks of day patient he will be eating some. Then we can continue to work with him at home and one day be completely off of the tube feedings. This is going to take a long time and I am afraid it is not going to be an easy road for Peyton.