January 31, 2005

Jimmy had another great weekend watching Ricky and Joey play basketball on Saturday. He was so cute as he cheered for them in a squat position, barely keeping off the court. Sometimes he sat on the basketball we brought and cheered from there.  He was so loud that you could hear him from across the gym (seriously)!  He did well staying off the court while the teams were playing, then he got to take a shot after the game was done.  Daddy held Jimmy up as high as he could and Jimmy took a shot and made a basket.  Hopefully it was the first of many he'll make in that gym.  One of the teary eyed moments we had there was shortly after Joey made a basket (his only one of the game).  The quarter was done and all of Joey's teammates who were playing at that time went over to the bench, and Joey went the opposite way to where we were standing.  He took Jimmy's hand with a great big smile on his face he said, "That one was for you buddy."  Then he ran off to be with the rest of his team.  It was so sweet, we had to hold back the tears from streaming down our face.

Jimmy has been running around and feeling great, of course, thank God.  Some of his new words include, "Elmo," "Jesus," "grace," "don't touch" and "up."  He always reminds us to say grace just before we eat.  He says, "Ace, ace" as he grabs the hand of the people he's next to.  Ricky, Joey and Jimmy all had fun visiting with Grannie yesterday.  When Mommy asked the boys if they wanted Grannie to come over to visit, they of course all yelled, "Yes."  The next thing we knew Jimmy was running into the kitchen holding a mask for Grannie to put on, and she wasn't even on her way yet.  He ran toward the door she comes in and was holding it out as if he was going to bring it out for her (we always hang in on the doorknob outside for her).  After a while when Grannie mentioned it was time for her to go, Jimmy would say, "No, No, No" and pull her back into the living room.  He just loves being with her (she still feels fine).

We got an e-mail about friendship last week, and it had a line in it that seems to fit Jimmy perfectly, "You are just one person in the world, but you mean the world to one person."  Jimmy and his health really do mean the world to us; he is the light of our lives.  Seeing him play, run, dance, talk, cheer, grow, 'sing' and EVERYTHING else he does is just unbelievable.  Ricky and Joey feel the same way, and they adore him just as much as we do.  Everyday we thank God for where Jimmy is, and wonder what Jimmy's precious donor's every day life is like (we still haven't heard from him, but hopefully we will).  We thank them from the bottom of are hearts, and will be forever grateful to them for giving us our angel back. Jimmy will have a clinic appt. this Thursday for a check up and a blood draw, and will have his dressing changed on Friday.

January 28, 2005

This was Jimmy's first week without a clinic appointment for a checkup and blood draw.  It seems very odd not having any numbers to confirm that everything is still okay.  We will go in next Thursday, Feb. 3 for his next clinic appointment.  Jimmy is off the Flagyl for now, and takes his Bactrim Friday, Saturday, and Sunday, two times per day.  Also, Phoebe came to change his dressing this morning.

Although we've been living by blood test results for the past year, as always, thank God, Jimmy's behavior seems to say it all!  He has been just incredible.  He can now say all of the animal noises for a: cow, sheep, pig, owl, chimpanzee, cat, dog, and chicken.  Ricky and Joey heard him go through his repertoire the other night and they were laughing so hard; they couldn't believe Jimmy could do so many!  With each new animal noise Jimmy made, both Ricky and Joey made this cute little noise and face of adoration and amazement.  Jimmy continues to amaze us all.

Grannie came over with her mask the other day and Jimmy put on a nice show for her.  He did 'tricks' on his rocking horse and so much more.  We often tell people about Jimmy's activities, but like Granny said, it is so different actually seeing him do it, as he is just a picture of health, love and happiness.  Jimmy didn't want Granny to leave, again, and every time she went toward the door he ran over and grabbed her hand to pull her back into the living room.  He just wanted her to stay.  Finally she had to go, but later when the door opened (it was Ricky coming home from school) he yelled, "Ma, Ma, Ma" in hopes of it being Granny again.

Jimmy is a Daddy's boy again right now.  He chants, "Dada, Dada, Dada" when he sees him.  They are still loving dancing with each other.

We are almost at 7 months post BMT and we can't believe that Jimmy is still doing so perfectly; it is indescribable as it is beyond our belief.  Jimmy hit Day +200 a few days ago.  Remember when we had our Day +100 celebration?  Time is now going by so quickly.  We still believe that the angel marrow Jimmy received from his precious donor, God, and everyone's prayers will keep him okay forever; we have to.

January 25, 2005

Jimmy had another great weekend and must be feeling well given his level of energy and activity, thank God.  Every day we thank God for finding and giving Jimmy his angel marrow and keeping him healthy.  Jimmy's presence and smile make this world a much, much better place.  We are getting quite used to being home (it's been 4 months without a hospitalization) and can't believe how fast time goes by when we're not in the hospital.  We are still thinking about where we were last year at this time, and can't help but have aching hearts for what Jimmy has been through, and for what others like him are going through right now.  There is a little girl in our area, Michaela, who is need of a liver transplant.  She too will need to be away from home for several months for her transplant.  Please add her to your prayers, we know how powerful they are.

Jimmy went to Ricky's and Joey's basketball games over the weekend, and cheered them on again.  Ricky and Joey both came up to Jimmy for a kiss during warm ups.  They were so cute, it was like a completely natural thing for them to do, wherever they are; they are so proud of their little brother.

Jimmy has always loved dancing with Daddy, and now their new favorite thing to do is dance to Rock and Roll.  Daddy puts Jimmy up on the table and holds his hands while he dances.  Jimmy moves his sweet little legs and feet so quickly it reminds us of the Celtic dancers.  It is so precious.  Speaking of precious, this morning Ricky made Daddy's coffee for him.  Ricky woke up and went downstairs to turn the coffee pot on so he could have it ready for Daddy when he went downstairs.  It seemed like behavior patterns come in waves and they are all doing very sweet, kind and thoughtful things for others right now.  Joey was crying the other day and Jimmy went up to him and gave him a hug and started rubbing his back (Jimmy has done that several times).  That too was very precious.  We are so thankful for our dear boys.

January 20, 2005

Jimmy had a clinic appointment today and everything went well.  Dr. Sivak and Fermin got a little show of what Jimmy can do, but of course he did not perform to his full potential, as most kids don't when they're in front of a 'crowd.'  Jimmy's numbers were all fine again today, thank God: WBC-6.03, HGB-11.1, platelets-474, AST-75, ALT-84, potassium, 3.9, BUN-19, Creat.-.4, and ANC-3,910.  His WBC and ANC went down a touch but are still within normal range.  Dr. Sivak said they are perfectly normal, (we just freak out when they fluctuate) and if they trend downward then we will take Jimmy off the Bactrim, and put him back on the Pentamidine.  All of his other numbers that would indicate if something was wrong were perfectly fine, like the HGB and platelets.  It is just so stressful.  We know Jimmy is acting great and that also means a lot.  Since Jimmy is doing so well he will go in for appointments every other Thursday, and only have blood drawn then; yet another step in the right direction.  Jimmy will go every other week for about 6 weeks and as long as everything is still okay he will only have to go in once per month for appointments.  At that point it is also likely that Jimmy's PICC line can be removed.  We are lucky it hasn't given us any trouble thus far, as they can get infected and cause problems.  Also, Phoebe will come to change Jimmy's dressing tomorrow.

Jimmy loves yelling "Love you" ("ya ya") to Ricky and Joey at night when they are in their own rooms in bed.  He keeps yelling it until they yell back.  He looks so proud of himself when they respond!  Thank you for keeping Jimmy in your prayers, we appreciate it so much!

January 19, 2005

Jimmy is still feeling and acting very, very well.  He is so full of love and energy; he just keeps going and going, trying to keep up with Ricky and Joey!  We no longer need to 'wonder' where is, or what he is doing.  We just follow the trail he left behind, follow the noise, or find Ricky or Joey.  He continues to say his version of new words every day, which include: "peek-a-boo", "bye", "ball", "please" and so many more.  He is such a smart and sweet little boy!  Jimmy needed a haircut so Mommy cut it over the weekend.  She has cut everyone else's hair in the family for years, but never had hair run through her fingers like Jimmy's; so soft, silky, and sweet.  She brought it to Daddy's attention, and he said, "That's because you're cutting an angel's hair."  It truly felt like how you'd imagine an angel's hair to feel.  God must love us very much since He gave us one of His angels to take care of.

We talked to the doctors at Fletcher Allen, and in Boston, at the end of last week and they said that a few of Jimmy's restrictions can be revised/lightened!!! They said Jimmy's immune system is similar to that of a newborn baby, as he has a new, uneducated immune system.  We can slowly begin to have family members over to our house, as long as they are not sick.  We still have to be very careful around Grannie, though, since Mono can be shed for so long even after symptoms are not present.  We can see her for short periods of time at our house as long as she wears a mask.  It is a good thing, too, because the other day Jimmy was having a fit, like a toddler having a temper tantrum, calling for Grannie as he looked through the window pointing to her house.  He was beside himself, pulling at his pants, making faces, jiggling up and down, etc.; he was completely having withdrawal (luckily she came over for a few minutes).  Also, Jimmy can go places where there are larger groups of people, like the boys basketball games, as long as he wears a mask.  Things won't be 'normal' until Jimmy has been off the Cyclosporine for 6 months, which will take us to June 25, almost 1 year post BMT.  That is when they expect his immune system to be at full strength.  Also, around that time, Jimmy will need immunizations all over again.

With these changes, we were able to take Jimmy to both Ricky's and Joey's basketball games on Saturday.  He had so much fun as he proudly cheered, "Yeah" and clapped his hands almost nonstop.  It was so precious; we were ALL so proud of him as he watched intently with his angelic glow and sparkling eyes.  Before we went, we told Ricky and Joey that Jimmy might be able to go in, but he would have to wear a mask.  We asked them how they would feel because people might look/stare at him since he was wearing a mask.  We didn't give them any adjectives to describe how they would feel because we just wanted to get their own genuine emotions/feelings.  Very quickly, they both responded, "Proud and happy!" as they jumped up and down.  We asked them if they would be embarrassed, even a little bit, because Jimmy would have his mask on, and they both said not at all.  Therefore we ALL went in to watch their games.  Ricky and Joey both played their hearts out for their biggest fan, their little brother, Jimmy!  Still, thank you God and precious donor for allowing us to go out as a family again.

January 13, 2005

Jimmy had a check up today and saw Fermin, one of his favorite doctors from when we were an inpatient at Fletcher Allen.  Jimmy seemed to remember him as he giggled a few times while Fermin examined him.  It was very nice to see him again.  Jimmy's bloodwork was excellent again today, thanks to his angel marrow:  WBC- 7.48, HGB- 10.8, HCT- 31.3, AST- 88, ALT- 91, BUN.-21, Creat.- 4, Potassium- 3.5, and ANC 5,390.  We still can't believe it, it feels like a miracle.

Jimmy is still learning more and more every day lately.  Daddy taught him how to hum this morning, it was so cute to hear his little voice hum.  Also, since he watches Ricky and Joey all of the time, Jimmy has gone 'pee on the potty' two times!!!  We couldn't believe that either.  We were told several times, by several doctors, that Jimmy could be delayed in various ways given all of the chemotherapy and radiation he's received.  It really is a miracle that he is thriving as he is given everything that he has been though.  As always, thank you God and precious donor!

January 12, 2005

Jimmy is still acting and feeling very well! He goes in for a check up and blood draw tomorrow and will have his dressing changed on Friday.