November 30, 2004
Jimmy has been in a really good mood that past 2 days. We think the Flagyl is making his belly feel better, and his appetite seems to be increasing. The doctors told us that people with C-Diff can feel really awful. God and Jimmy's amazing donor have teamed up to provide us with another set of beautiful blood work results from yesterday: WBC- 8.27, HGB-10.5, platelets-508, AST-72, ALT-61, potassium 4.4, BUN- 29, Creat. .5, and ANC: 6,480. We get so emotional when we see these numbers, we just can't describe it.
As long as signs of GVHD do not occur, Jimmy will be finished with the Cyclosporine in about 4 weeks! We are also able to reduce the dose of Bicitra (from 3x's to 2x's per day) now that Jimmy's potassium level seems to be stable with the taper of Cyclosporine. Also, his blood pressure patch can be cut in half, literally, since Jimmy's b.p. has recently been in the 70's over 40's. It's hard to imagine that we only have about 4 weeks left of a strict medicine schedule.
As we re-read some of the updates and include stories about Ricky and Joey, it sounds like we've portrayed them as perfect little angels. However, they can be very mischievous at times, as you can well imagine! They would, of course, do anything for Jimmy, and that's why we share those little stories with you; Jimmy brings out their piece of perfection and innocence. Those are some of the 'precious moments' but at times they can give us a run for our money!!!
November 27, 2004
We hope you all had a wonderful Thanksgiving! We are so grateful to Jimmy's donor, doctors, nurses, and all of our wonderful friends and family members who have helped us get where we are today. We are so grateful to God for answering our prayers. Thanksgiving was a very emotional day for us as we couldn't stop looking at Jimmy and thinking about his amazing donor. It was completely overwhelming. We had Thanksgiving dinner at our house with Grannie, lucky us, then she went over to Aunt Debbie (Mommy's sister) and Uncle Tom's house to join everyone else. We also let Ricky and Joey go over so they could play with their cousins. Therefore, most of Jimmy's Thanksgiving afternoon was spent playing with Mommy and Daddy. He was very happy when Ricky and Joey got home around 8 PM.
Jimmy's Uncle Ray (Mommy's brother), Aunt Deb, and cousins came from Philadelphia for Thanksgiving!!! Ricky and Joey were very excited to see their cousins, we all were. We hadn't seen each other since Jimmy was 2 months old. Jimmy was able to visit them outside for a few minutes on Friday, but it was very cold out, and Jimmy had to go inside. They are staying with Grannie, lucky them!
Jimmy has C-Diff again so started with the Flagyl on Wednesday evening. Bless his heart for taking that awful tasting antibiotic. Phoebe came to do his dressing change Friday morning and didn't need to draw blood because his blood work has been so wonderful. Jimmy's blood will be drawn once per week now, when we go in for Pentamidine on Mondays, or at our clinic appointment on Tuesdays. It is such a victory to be down to once per week now, but hard to not have them as constant reassurance.
Jimmy has been drinking pretty well so we are weaning the IV fluid to approximately every other night. He hasn't been too hungry lately, likely due to the C-Diff, as it can make you feel quite yucky. His mood has been generally okay, but a bit whiney at times. When he whines we always wonder if it's because something doesn't feel well. It's quite hard for us to remember that he is a toddler now and will have moments of being whiney, as a normal toddler would.
Again, thank you all for your thoughts and prayers, you are wonderful people. God, Jimmy, his donor, and you are all so amazing. We are so blessed to have such wonderful people in our lives.
November 23, 2004
Jimmy had a really good weekend. He was playful, and still very funny and smart. Jimmy went in for an appointment this morning for a checkup and blood draw. Ricky and Joey told everyone that it was Daddy's birthday, and that he's 29 (again). Jimmy's numbers for today were fine, bless his heart: WBC-7.6, HCT-29.4, platelets-427, potassium-4.6, AST-106, ALT-83 (those took a little bump up), bun.-24, creat.-.5 and ANC-6,040. He is so amazing. His donor is so amazing. We've been wondering if he got his letter yet. We sent it Nov. 5 but it has to go through several institutions in order for it to remain anonymous, so it may take a while.
Daddy and Jimmy fall in love with each other all over again when Daddy has days off. You can just see it in both of their eyes. Jimmy just loves to dance and play with Daddy. Also, no one can make Jimmy laugh like Daddy can. Jimmy even looks at him with a funny little grin as if he understands his humor. He becomes a 'Daddy's boy' during these days and they both just melt when they are together; what a bond they have. Jimmy knows that Daddy would do anything in the world for him. Jimmy got Daddy a special Red Sox T-shirt for his birthday since they both love baseball, and so many Champions came from Boston this summer.
One story we have to share with you happened over the weekend. Saturday morning Ricky came inside from playing basketball so he could help Mommy give Jimmy a bath in the kitchen sink. It's usually a 2 person job because Jimmy has to keep his left arm up on the counter so the dressing for his PICC line doesn't get wet. He usually just puts in there on his own, but Ricky was helping just in case. Ricky was staring at him, shook his head and said, "He is just pure beauty." It was so precious as he said it with so much love and sincerity. These boys just keep on amazing us. Joey has a stuffed nose and slight cough again, so he is being extra careful around Jimmy. Jimmy actually is having a bit of a runny nose today, and it is so hard keeping them away form each other since they just love playing together.
We have to share two more funny and smart things Jimmy did over the weekend. We were soaking some lettuce for a salad in the sink where Jimmy takes his bath. He started pulling at his shirt to take it off so he could hop in and take a bath! It was so cute! Then, last night we were putting some new lettuce away in the refrigerator and he started pulling at his shirt again. It took us a minute to figure out what he was doing, then remembered that the last time he saw lettuce he thought he was going to take a bath. It was so cute! Finally, Friday morning Daddy saw Phoebe pull in the driveway said her name in conversation, "I'll go let Phoebe in" (or something like that). Jimmy heard Phoebe's name and pulled up his sleeve so you could see his dressing/PICC line. He knew that Phoebe comes here to work on his PICC line and pulled his little sleeve up so she could get to it, even before she was in the house. He is so sweet! He also pulled up his sleeve yesterday when he saw the 'Adhesive Remover' on the counter; that's what we use to help take the dressing off. The little angel is so smart. We thank God every day for his well being. We are in awe about how smart he is, considering all of his intensive treatment, especially the radiation, which could have made him delayed. It wouldn't matter in the least if he was, it is just so amazing that he's not. Thank you God and precious donor; we have a lot to be thankful for this Thanksgiving.
We wish you a wonderful Thanksgiving with your loved ones!!
November 19, 2004
Jimmy is great! Today he is having a super day as he is very active, playful, vocal, and funny; what a sight! We though he was feeling well by how he was acting and his blood work was back to being awesome again today. Phoebe came this morning for the dressing change and blood draw. Jimmy's numbers for today are: WBC-9.94, HGB-10.4, HCT-30, platelets 509, and ANC-7,100! Yeah! Another good number from today was his IgG level at 573. It went up yet again from 2 weeks ago. His donor is absolutely amazing. Every day we still can't get over what he has done for us; it is just overwhelming.
Jimmy kept us hopping this week as we had to make an extra trip into the hospital on Wednesday morning. Tuesday night his PICC line was 'stuck'' when we went to flush it (just before hooking him up to the IV fluid); we could not push anything through. You don't want to push too hard because there was likely a blood clot at the end of the line. We had to go in Wednesday morning so they could put TPA in the line, a drug used to break up the blood clot. They had to work pretty hard to get the TPA through the line, then an hour later when they came back to check, the line was functioning properly. The TPA worked, thankfully. Jimmy needed to have TPA put through his lines twice before, when he had the central line.
Jimmy loves Grannie!!! Whenever we go outside he starts walking toward her house, and doesn't stop until he gets there; he's a man on a mission. He also points to her house when we drive by and says, "Mom, Mom, Mom". It is so precious. He gets so excited to see her. Jimmy is still getting after Ricky and Joey ALL of the time. He adores them, too. Yesterday morning he wanted Joey to hold him, but he was eating breakfast. Mommy told Joey to finish eating because his cereal would get soggy, and that he could hold Jimmy after he was finished. Joey got up from the table and said, "Who cares" as he left his cereal to get soggy and went to hold Jimmy. They love him more than we can describe. We give thanks daily for our 3 precious boys.
