Georgie’s Journey

These past few weeks of seclusion and isolation really isn’t that strange to us. We are use to it, for the most part, because of George’s transplant rules. When you throw my husband working from home and the girls both out of school however it becomes a whole new ballgame. Good thing we all play well together because wow are we in close quarters. 24/7. The online homeschool programs have helped break up the monotony of trying to come up with activities. The closets are all cleaned out and the toys have been organized and are being shown new appreciation. The elastic in our pants is being put to the test. The tv is the all time hero of the century. Our prayers are heightened as well as our appreciation for people who have no choice but to be thrown into the war zone of CoViD 19. Just as we were starting to enjoy a little relaxation of being in seclusion from his transplant we are forced to tighten up the walls around us and protect our family and our boy. Going to Nemours today once aga...

It has been a wonderful time relaxing at the beach all last week. We had to come in for 2 dr appointments but headed straight back to paradise after. We had a really great time unplugging from real life and taking in all of the wonderful weather and peace and quiet. Last weeks counts were wonderful. His hemoglobin was up to 10.1. That is so awesome! He was looking and feeling great all week. We came home to the doom and gloom of the oh so real threat of this Coronavirus. It’s easy to check out and not feel stressed about something so big when you are all alone in a bubble of a beach house. Now that we are back, the heaviness of it all is looming. Kate woke up in the middle of the night last night with a fever. She seems fine today though. I feel a little weird health wise. Just not 100%. I took George in today for labs and his ANC has dropped below 1000 which means any fever he gets he will have to be admitted to the hospital. We will give him some Neupegen tomorrow to help boost the w...

Due to a dentist appointment, Kate couldn’t go to school so she was able to join George at his dr appointment yesterday. He loves having someone come with him to “his” dr. He shows off big time. The child life specialist that works on the 8th floor at Nemours has a basket full of light up toys to distract the kids when they are being accessed or getting other treatments. These are George’s favorites. He told his nurse right when he walked in that he wanted Joli (the child life specialist) to bring in the light ups for Kate to see. He turned off the overhead lights and they started their very own rave. Now what’s a rave without rave music? You know I had to. Luckily the staff knows we always have loud parties in our room so they are use to our dance moves and noises that come with it. George’s labs came back this morning and guess what? His hemoglobin is up again! On its own. It came up to 9.8. I can’t even with this great news. It’s happening. His anemia is finally going in the right d...

Yesterday George spent the day at Wolfson day hospital to receive an IV treatment of antibodies. This is a long process so we camped out for the day. George always brings something with him when we go places (not annoying at all) and so this time he chose to bring his bug catching net. This net has brought so much entertainment to George. He catches anything and everything he can. Including people. He insisted that this was the best toy to bring since there were so many bugs and fish at the hospital. As we walked the long winding path through the different hospital halls he swooped left and right and up and down. Other pedestrians were leaping out of harms way as the Exterminator did a thorough sweep of the premises. Never a dull moment with this guy. The labs that were taken yesterday came back with pleasing results. His hemoglobin had once again held at 9.2. His platelets were up and thanks to the Neupegen so was his ANC. So much so that we get to stop taking it for the time being. T...

Life lived as a potty trained little boy has been wonderful. George is so funny. He has really just taken to it like diapers never even existed. He doesn’t even wear one at night. It’s amazing. I think God threw me a bone on this one. George has even learned, and quite likes, pee peeing in the great outdoors. I think it is every boys rite of passage to be able to use the potty outside. George sure thinks it is the coolest thing on the planet. Today his labs came back with some really encouraging news. His hemoglobin came up on its own. It was at 9.8 today. Huge huge praise!!! I believe with my whole heart that this is going to be the turn around in the anemia. What awesome news! But it wouldn’t be George if some bad news didn’t come hand in hand with the good stuff. His neutrophils have dropped once again. More Neupegen shots start today and will continue every other day until his counts raise and are consistent. Who knows why this is happening. He remains a medical mystery once again....

Thursday we went in for our labs and for the IV treatment at the day hospital. It was a good day. Nothing exciting. Nothing really out of the ordinary. George did receive a special little beanie baby Goose name Loosey upon arrival which he really took a liking to. Maybe it was because it was such a random stuffed animal to receive or maybe he just genuinely likes geese. Either way, Loosey quickly became Georgie’s best buddy. I did not get any results on Thursday nor did I get any answers to any of the questions I had on a game plan. This may set some people into a nervous tailspin of “what if’s” or “why aren’t they calling me”. Not me. It actually helps me to enjoy my weekend and not think about George’s health for a short time. When I don’t hear news I always assume it’s for the best. Regardless of if that is the case or not. So we enjoyed our no news bliss until we went for labs today. Boy that was a nice break. I guess it was preparing me for the heavy news given today. First thing ...

Monday we took the day off from Nemours and I was able to head to a fancy lunch (meaning not fast food) and a movie with Bowers and Kate. George’s nanny (mom mom) and George spent the day playing and laughing. Thank goodness he makes her laugh so much or I don’t think she would agree to watch him as much as she does. Tuesday, we headed in for labs and a dr visit. His labs came back and showed that his hemoglobin had dropped. Not a ton but it did. I was actually thinking it might have gone up because his color was so pink and he had been so full of life and energy all weekend. The pinkness might have been from the overload of outdoor play Saturday and Sunday where he may or may not have been in just a diaper. Boys love to feel free I guess. My girls always liked to be fully clothed at all times. Not George. Look away for a minute and he will be shirtless or completely naked. He also decided that he wanted to start using the potty this week. He randomly said he had to go to the bathroom ...