7 years ago
Sunday, April 14, 2013
We're Having a Party
Trevor was so excited about this weekend. He said when he got home from school on Friday, that he had been waiting for it all week. That night it was Trevor's turn to go on a date with Grant and me. We had fun hanging out with him. This has been a lot of fun to spend time with the kids individually. Then yesterday was his Birthday party. Of course he chose Chuck E. Cheese. Five kids were able to come and enjoy the festivities. He saved some money by baking his own cupcakes this time--part of his gluten-filled themed party. So much fun for everyone!
Thursday, April 11, 2013
GI updates
I remember that being a blog post before. Alright maybe a few times before. I think we all should get use to that title!
Mr. Trevor and Miss Piper went in together to the GI doctor yesterday. I made Grant come with us, and I am so glad that I did. It was so nice to have another pair of listening ears--ears that are also connected to a medical mind was nice too.
Trevor has gained about 4 pounds since leaving the hospital (3 weeks now). The doctor was amazed at how well he feels. He talked to us about starting him on another medication that will help his body not to reject the Remicade (his Rx that is given through IV therapy). That med is given through pill form. But with all meds, there are side effects. I long for the days when we just had to decide to give our kids Tylenol or not. It is hard to be the person to decide what another person will take that will impact their health and body for the rest of their lives. But on the bright side, he is no longer limited by physical restrictions, diets, or quarantining (to a degree on this one--we have to be a bit more careful with him than the other kids). He will have his next infusion in 4 weeks. Then after that, it will be every 8 weeks--so spaced a bit farther apart than what we were originally told (which is SO nice because it is an all day affair).
Piper is doing fine. She plateaued on her weight again. She is coming in at a whopping 22 pounds with 3 months until her 2nd Birthday! The dr would like to see her gain weight. He is going to do another test on her to check something else, but other than we will wait and see. He believes that more than likely she will grow out of this, but the fact that she is not gaining weight, he wants to keep following up with her.
And there you go. That's what their progress looks like. We'll go back in 3 months. I hope there will be no updates until then. That means that everyone has happy tummies.
Mr. Trevor and Miss Piper went in together to the GI doctor yesterday. I made Grant come with us, and I am so glad that I did. It was so nice to have another pair of listening ears--ears that are also connected to a medical mind was nice too.
Trevor has gained about 4 pounds since leaving the hospital (3 weeks now). The doctor was amazed at how well he feels. He talked to us about starting him on another medication that will help his body not to reject the Remicade (his Rx that is given through IV therapy). That med is given through pill form. But with all meds, there are side effects. I long for the days when we just had to decide to give our kids Tylenol or not. It is hard to be the person to decide what another person will take that will impact their health and body for the rest of their lives. But on the bright side, he is no longer limited by physical restrictions, diets, or quarantining (to a degree on this one--we have to be a bit more careful with him than the other kids). He will have his next infusion in 4 weeks. Then after that, it will be every 8 weeks--so spaced a bit farther apart than what we were originally told (which is SO nice because it is an all day affair).
Piper is doing fine. She plateaued on her weight again. She is coming in at a whopping 22 pounds with 3 months until her 2nd Birthday! The dr would like to see her gain weight. He is going to do another test on her to check something else, but other than we will wait and see. He believes that more than likely she will grow out of this, but the fact that she is not gaining weight, he wants to keep following up with her.
And there you go. That's what their progress looks like. We'll go back in 3 months. I hope there will be no updates until then. That means that everyone has happy tummies.
Monday, April 1, 2013
Happy Birthday!
Mr. Trevor turned 9 today. He asked for crepes for breakfast, top ramen for dinner, and cookies for his cake. Actually he asked for corn dogs, top ramen, pizza, and macaroni and cheese for dinner. I took the least offensive one for the girls. He had one of his good friends from school come over and got to play for a few hours. And he had a special treatment of getting to play on the computer a lot today.
Our Trevor has obviously gone through a lot lately, but is doing so well. He is eating like crazy. I cannot emphasize enough how much he is eating. Like all day long. Our son who never ate sweets, is eating candy all the time. It is like he never knew how delicious it was and now wants to experience it all the time. I had his parent-teacher conference last week, and he is doing amazingly well in school. His teacher said that he sometimes needs extra time to do his work so he can get it just perfect. He is okay with that because he knows that when Trevor is done, it will be amazing. He even had some of Trevor's work hanging up in the hall because it was so well done (only a couple of people's work was out there). Trevor has been playing outside since we got home, and is often the first one out there. This is so different for him. We have always had to almost bribe him to go outside. It is so much fun to see his joy in these activities that he hasn't taken part in much. He still wants to be an architect when he grows up, he still enjoys using big words in his writing and when he speaks. He is a bright kid. I'm so glad that we have been able to find out more about him lately and get him the help he needs to enjoy life more. And eating more--he definitely is enjoying eating more.
Our Trevor has obviously gone through a lot lately, but is doing so well. He is eating like crazy. I cannot emphasize enough how much he is eating. Like all day long. Our son who never ate sweets, is eating candy all the time. It is like he never knew how delicious it was and now wants to experience it all the time. I had his parent-teacher conference last week, and he is doing amazingly well in school. His teacher said that he sometimes needs extra time to do his work so he can get it just perfect. He is okay with that because he knows that when Trevor is done, it will be amazing. He even had some of Trevor's work hanging up in the hall because it was so well done (only a couple of people's work was out there). Trevor has been playing outside since we got home, and is often the first one out there. This is so different for him. We have always had to almost bribe him to go outside. It is so much fun to see his joy in these activities that he hasn't taken part in much. He still wants to be an architect when he grows up, he still enjoys using big words in his writing and when he speaks. He is a bright kid. I'm so glad that we have been able to find out more about him lately and get him the help he needs to enjoy life more. And eating more--he definitely is enjoying eating more.
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