A Miracle

We met a new family here at the RMH tonight. Their 10 year old daughter is receiving a kidney from her step brother tomorrow! Wow what emotions and memories that brought! I was so excited and nervous for them, but mostly excited. Her step brother is here as well and it was wonderful talking to him. I couldn't help but thank him over and over again for what he was doing. Since we haven't heard anything from Jared's donor's family, I told this young man that he was going to receive thanks from me as well for what he was doing. Organ transplantation is truly amazing! I am still in awe of the gift that we have received. Jared is a healthy, amazing, delightful little boy and he is here and healthy because of that gift. How can you ever thank someone enough for such a gift? It is impossible! Please pray that everything will go smoothly for this family. Each time a transplant takes place a miracle happens. Miracles do happen!

Week Three Update

This week is plugging along quickly. Jared is still doing great! This week they are working on him learning to feed himself. He is doing so well! The textures are going to take a long time, but he is still doing so well with his smooth textures and with his milk drinking. It really is amazing! I know that there are many who can't possibly imagine Jared actually putting a spoonful of food in his mouth, so I took a little video of him today. Check it out!

Yesterday we also started potty training! Yes, this clinic is amazing! I told them that this place is magical or something because Jared just seems to be getting things figured out here. We had two successes in the toilet yesterday afternoon and 4 successes today! Dr. Williams is just so great and put Jared up on that toilet and encouraged him and cheered him on. If Jared sits on the toilet he gets a sticker, but if he actually performs on the toilet he gets to pick something from the prize box. He has picked out a car every time so far (surprise, surprise,). :) It will still take time, but we'll get there!

I can't get over how wonderful the RMH has been. I really haven't felt very homesick or lonely because we are with such nice people all of the time. Tonight a lady came in to teach how to knit. She was a good teacher and I think that I am starting to get it figured out. I have always wanted to learn how to knit!

Earlier in the week a very nice family came in to prepare a delicious meal for the house. They stayed here several years ago for 3 months and wanted to give back so they have been coming once a month for over two years to prepare meals! They were such nice people and I was just amazed at how dedicated they are to giving back to the community. Such amazing examples and I can't wait to start doing the same!

Half Way There

I can't believe that we are half way there already! It has gone quickly and Jared and I have settled into a routine of sorts. As far as eating goes, Jared is still working on various pureed foods. This is a long, slow process but he continues to be extremely cooperative. Candace, Jared's therapist, assures me that he is doing well, but to be patient because this is so new for him. But he is still drinking his milk like a champ and still cooperating about trying the new textures. He'll get the hang of it eventually. Slow and steady wins the race, right?

We were sad to say good bye to Monica and Gavin this weekend. Gavin finished up his last week this week and went home without his feeding tube. Way to go Gavin! We had a nice time getting to know them and it has been rather quiet without them here. Jared keeps asking where Gavin is and when I tell him that he is home he says, "I miss my Gavin". They got to be good little buddies.

I like this series of pictures. The two of them (well, mostly Jared. Gavin just followed him.) could not hold still for a picture. They start down low on the stairs and slowly make their way to the top.

I finally gave up trying to get a picture of the two of them smiling!

Monica, Gavin, Jared and I

On Saturday, Jared and I went on a field trip. Thanks to Erika's GPS that she let me borrow, I have been a little more daring in this unfamiliar place. We drove to Lancaster county where many of the Amish people live, to the town of Strasburg. They have a wonderful old steam engine that they have restored and Jared and I took a ride. It was a beautiful ride through the rolling, green, hills of the countryside. Jared absolutely LOVED it! He was so excited to ride a "big" train. After the train ride we went to a little store that has the most amazing model train lay out that I have ever seen! Jared was in heaven and literally walked and walked around the display more times than I could count. I had a hard time keeping up with him! It was a fun afternoon. I am loving the beautiful state of Pennsylvania! I love the green rolling hills and the beautiful farm country. I love the old farms and big barns that have been so well taken care of. It is fun to see a new place.

The steam engine that gave us a ride. Jared called it the "big, black, train."

The car that we rode in. Jared isn't liking to smile for pictures these days. :)

Taking in the scenery.

The model train exhibit that is every little boys dream!

An Amish farm that we passed on our train ride.

Wednesday Update

Things are still going well. He still prefers smooth textures but he is getting better at tolerating the others. He has now figured out that one of the bowls usually has something different in it and so he asks at each feeding session what everything is. There's no fooling him!

What Jared has eaten so far:

1. yogurt- Definitely his favorite. He'll take it in any flavor.
2. pudding- Vanilla is his favorite. He told us yesterday that he didn't like the banana kind.
3. apple sauce- This one was hard at first, but he is doing great with it now. He likes the strawberry applesauce the best.
4. milk- Still doing great and getting better at drinking from a cup.
5. pureed chicken noodle soup- Not his favorite. He likes to procrastinate each bite but still manages to keep it down as long as it is followed quickly by a drink of milk.
6. pureed lasagna- This one has been hard as well, but his last two bites of it today went down without any gagging.
7. cream of wheat- The texture was hard for him, but he still did ok.
8. pureed peaches, pears, & pineapple- Liked it! Even handled the texture ok!

First Time!

For the first time in Jared's life, he is sleeping without being hooked to a feeding pump. Miracles do happen! And I don't even have to worry about the pump beeping at me in the middle of the night, or his medicine port popping open and the bed being fed all night. Wow! Way to go Jared!

One Week Down

Jared at one of his feeding sessions.

His reaction to a bite of applesauce.

Drinking his milk from a medicine cup.

Week one has gone by quickly! Jared did great and they are very pleased with his progress. From Monday to Friday he tripled his intake! Can you believe that? It is amazing. It is a slow process but they keep assuring me that he is progressing faster than they had anticipated. The open cup drinking is challenging. Have you ever thought about how difficult it is to drink from a cup? I hadn't. It is definitely a skill that I took for granted. Jared's getting better at it, but it is tricky. He likes to keep his tongue up at front and it pushes the milk back out, but he is getting better and better at it. We give him his drinks from a little medicine cup about 1 tbsp. at a time. He gets 4 oz. at every meal time and with his 6 meals a day he is getting quite a bit down! Go Jared!

I am so grateful for the Ronald McDonald House. I can't imagine how difficult it would be to be here for a month in small hotel room all by ourselves. The RM house is like home away from home. Every one is very friendly and there are always people to visit with and home cooked meals every evening. We are feeling quite comfortable here and I am so grateful for those that make this house possible.

Jared and I are getting to be great friends with Monica and Gavin. Gavin is the other little boy in the program with us and they are also staying here at the RMH. They are from New Mexico and Gavin is also a transplant patient. He had an intestinal, liver, pancreas transplant when he was one. He is four as well and he and Jared are getting to know each other very well now. We have decided that they are starting to act like brothers now. They are silly and like to tease one another! Today we took the boys to a park and then to Chocolate World. It was nice to get out and the boys enjoyed the outing. It has been a nice, quiet day.

I received a wonderful tender mercy today. As we sat down at Chocolate World to enjoy our famous milk shakes, I looked at the table next to us and was surprised to recognize the people sitting there. It was Glen and Kim Judd. They were on the BYU ballroom team with us for a couple of years. I went over to visit with them and they were as surprised to see me as I was to see them. What a small world! They live in New Jersey but were in the area for a wedding. They gave me the name and number of a women from the ward here in Hershey and then called her and gave her my contact info. She called me tonight and was so sweet and offered to help in anyway that she could. She also confirmed the time and place of Sacrament Meeting tomorrow so Jared and I will be able to go to church. It is such a blessing to know that no matter where you are, the church is always there. This little miracle today also reminded me of how much Heavenly Father knows me, loves me and is aware of what I need. It was a good day.

Jared and I holding a 5 pound bar of chocolate at Chocolate World!

Jared and Gavin

Transplant buddies and eating school friends.