Ace is doing really well taking his chemotherapy. We have been thrilled by how well he is doing. He is normally not too good about taking medicine, but he has done great! We give it to him at night normally between 8 and 8:30. He has to take it on an empty stomach, so we give it to him based upon the time that he finished his last bottle. We then wait a few minutes and give him phenegren, then we wait a little longer(until it has been 30 minutes since the chemo) and we give him his night time bottle. The first night was REALLY rough. We did not give him the phenegren. The doctor had said that he might not need it and to give it as needed only. Big mistake not giving it to him. He was miserable until the next night around 6:30- just in time to get ready to give it to him again. The second night we gave him the phenegren and he did better. He has been spitting up quite a bit more since starting the medicine, which is to be expected and has been dealing with some diarrhea, which is unfortunately also to be expected. He is not sleeping too great, but he wasn't a great sleeper before he started on the medicine. Some nights are better than others. Honestly, he is pretty much our happy, easy-going little trooper. What normally messes things up is that right about the time he goes to sleep, he goes to the bathroom. Because the area that is of most concern right now with the rash is his bottom, we change him immediately after he goes to the bathroom, day or night. Last night he went 4 times, 2 of those times were right after he had gone back to sleep. :-( Poor baby! All in all, he is doing great. We really think that the spots on his back, neck and head look better. I don't think that the area on his bottom is really any better yet, but I don't think it is worse either. The fact that the other areas look better makes me feel really positive and I hope we will see a noticeable difference on the area on his bottom soon.
Tinsley woke up on Monday morning around 3 a.m. with fever. She was fine Sunday night when we put her to bed and woke up twice during the night before she woke up at 3 and was not running fever. How can a kid go to sleep fine and wake up with a fever close to 103 just a few hours later? We thought it was likely a virus which is what the past few visits to the doctor had resulted in. We gave her Advil at 3 and tylenol at 6. The fever was still at 102 and she felt crummy, so we went to see Dr. Boecker. We are so glad we took her. She has tonsillitis. They gave her an antibiotic shot of rocephin and put her on a strong dosage of amoxicillin. Her fever finally broke yesterday, so as of today, we can have her and Ace together again. Dr. Boecker said to keep them separated until she was fever free for 24 hours. We can't be too careful and have to make sure we take all steps to keep Ace from getting sick.
We are thrilled that Ace is doing so well with his medicine and that Tinsley is back to feeling good again. Please continue to keep Ace in your prayers. Our hope is that the 6MP will work and he won't have to have a port put in for chemo. While we know this would not be the end of the world, we would just like to not have to put him through it if at all possible. Thanks for checking in on us!
Ace has been rolling around everywhere these days! He can roll from his back to his tummy and his tummy to his back easily. He will also spin around in a complete circle on his back. He will be mobile in no time!
This picture cracks me up. Mom sent it to me the other day when Ace and Tinsley were at her house. Tinsley loves watching any movie with animals. She has a movie that she calls "rodeo". Obviously, there is a rodeo in it. She sits and claps and cheers during the movie. They both seemed to be enjoying the "rodeo" when mom took this.
This picture is not very clear, I took it with my i-phone in the dark with the flash off. But I think Ace and Toby look so sweet. He seems to sleep longer periods if we hold him, so that is what we have been doing the majority of the time at night. He has gotten better over the past few days about sleeping in his swing. He still wakes up pretty much immediately if we attempt to lay him down.
I wish I could have understood this conversation.
"No cheese mom" was the response I got when she realized
I was taking their picture.
We bought Ace a new swing this week. Our current swing creaks pretty loud when we turn it on. It has been used A LOT. We went through 2 swings with Tinsley as well. The other issue we had with it is the fact that it sounds like a machine gun going off when you turn the mobile on. I can't imagine why- ha! Tinsley is constantly pulling on the toys on the mobile saying "You want your toy Ace". I catch her sitting in Ace's stuff all the time. Here she is in his rocker. Yesterday I walked through the living room and she was sitting in his swing watching tv. I guess I should just be glad she doesn't attempt to get in them when he is sitting in them.
While I was getting breakfast together yesterday for Tinsley, she put her Dora's in the extra chairs at the bar and climbed up on a chair with Clifford. She loves her dolls. She will talk to them as if they are real. She constantly says "Hi Dora" or "Come on Dora"
I promise Tinsley has a closet FULL of clothes. Her fever has been so high this week that we haven't really been fighting the keep your clothes and socks on battle. She is normally pretty good about clothes, but does hate to wear socks and shoes. It seems like pretty much every picture I have from this week, she is wearing her diaper and her Cinderella high heels. Oh well, whatever works :-)
Mom took this video of Ace. She is apparently VERY funny:-)
