They both need lessons.
The lovely Miranda
All the stuffed animals are in the living room.
Saturday, February 26, 2011
Play date with Miranda
Jake had his first play date with Miranda. He worked during the week to earn enough money by taking out the trash and cleaning up his toys so he can take her to a movie and lunch. Having two toddlers close in age with Miranda being 5 and Jake 4, it was much easier than I expected. They screamed, teased each other with glee and I was ignored. Jake took Miranda down to the Crown Center shops and showed her around to all his favorite shops and activities. He also played his favorite movie's for her. The day was filled with non-stop activities and after Miranda left, Jake quickly fell to a deep nap. She wore him out!
Tuesday, February 22, 2011
The New Upside Down Show
It all started with Heather and Kim from Make-a-Wish (MAW) visiting our home in December 2010. Although Jake was bashful, they played games with him and found their special way to ask him his wish. He wanted to go bowling. It took a while for us to get him off that wish. His TV idols were Shane and David from the Upside Down Show. So the idea was born that Jake's wish would be to go bowling with Shane and David. This excited Jake to no end. If they couldn't do that then plan B was Disney World. Jake's birthday was on January 19 and he told me his birthday wish was to bowl with Shane and David . He also threw numerous coins in various fountains with the same wish.
We got the call in late January that MAW was planning on having Jake meet Shane and David in mid February but it wasn't final yet. Mark and I kept it quiet until we got the final word two weeks later. It happened very quickly. When we told Jake, he was somewhat in disbelief. We told him, he was going to touch and talk to Shane and David and not just watch them on TV.
We got a call early 6:30 AM from our limo driver that MAW sent. We knew something was strange when he said he couldn't pull the car into our driveway. When we saw the limo, we finally new why. It was a stretched Cadillac Escalade that could hold up to 14 people. Inside ceiling lights that changed color every few seconds stretched from the front to back. Jake was in amazement over the car. We all sat in the very back packed together looking at the changing lights and talking about our exciting weekend. It was wonderful that although we were in a huge vehicle, that the three of us squeezed together in one seat but that's how we are. We like to be together.
Jake at the back of the limo..6:30 AM is so early.
The trip up was uneventful which is how we like it when we fly. The Galt Hotel in Louisville, KY was big and they had aviaries that were totally enclosed in glass. Jake was excited to see the birds and he decided to call the hotel the "bird hotel."
Jake managed to find a bowling alley in an area called the "4th street live." He spotted a sign for "Lucky Strike" that looked like a bowling pin. It was Jake's weekend, so we bowled. We probably would have done it even if it wasn't his wish weekend.
The next day was the big day. Shane and David were so generous with their time and their wonderful imagination. The crazy zany imagination just oozed out from them. It will be a day we won't ever forget. See for yourself...
"The New Upside Down Show"
We got the call in late January that MAW was planning on having Jake meet Shane and David in mid February but it wasn't final yet. Mark and I kept it quiet until we got the final word two weeks later. It happened very quickly. When we told Jake, he was somewhat in disbelief. We told him, he was going to touch and talk to Shane and David and not just watch them on TV.
We got a call early 6:30 AM from our limo driver that MAW sent. We knew something was strange when he said he couldn't pull the car into our driveway. When we saw the limo, we finally new why. It was a stretched Cadillac Escalade that could hold up to 14 people. Inside ceiling lights that changed color every few seconds stretched from the front to back. Jake was in amazement over the car. We all sat in the very back packed together looking at the changing lights and talking about our exciting weekend. It was wonderful that although we were in a huge vehicle, that the three of us squeezed together in one seat but that's how we are. We like to be together.
Jake at the back of the limo..6:30 AM is so early.The trip up was uneventful which is how we like it when we fly. The Galt Hotel in Louisville, KY was big and they had aviaries that were totally enclosed in glass. Jake was excited to see the birds and he decided to call the hotel the "bird hotel."
Jake managed to find a bowling alley in an area called the "4th street live." He spotted a sign for "Lucky Strike" that looked like a bowling pin. It was Jake's weekend, so we bowled. We probably would have done it even if it wasn't his wish weekend.
The next day was the big day. Shane and David were so generous with their time and their wonderful imagination. The crazy zany imagination just oozed out from them. It will be a day we won't ever forget. See for yourself...
"The New Upside Down Show"
When it was all over we capped the day with a visit to the Louisville Science Center and had a wonderful dinner together as a family at the bird hotel. It took us awhile to calm down from the high of the day. MAW is a wonderful organization and can't thank them enough for all that they did for Jake. Now back to our normal life but a bit better for meeting Shane and David.
Sunday, February 20, 2011
The final year
It has been a while since I've updated everyone on Jake's progress through this blog. We are on our final year of treatment. We felt so overwhelmed before but we are starting to feel a bit more at ease. We are definitely not off our guard but feel better. December 31, 2011 will be the very last day of Jake's treatment. The treatment abruptly ends on that day no matter what stage we are in as long as everything goes as planned. We get to throw away all the pills, syringes, grenadine that hides the taste of medicine, the dread and fear.
Jake will keep his port for at least six more months after treatment so that he can get his monthly pentamadine antibiotic to prevent him from getting a rare lung bacteria. We will have clinic visits every month next year but no more chemo. We are planning and saving for a big Disney vacation on New Years Eve so that we can properly celebrate.
We are starting to see Jake's unique personality. I definitely do not believe in the "tabla rasa." He has mannerisms and opinions about things that are his own. He has his way with the ladies and makes friends very easily. He is a sensative child that hates to get scolded. I hope he doesn't turn out to be a perfectionist because we will drive each other nuts.
We just got back from a special weekend trip to Louisville, KY to visit Shane and David from "The Upside Down Show." The duo are Jake's idols and during the whole experience Jake did not stop smiling and launghing. We felt joy vicariously through Jake like never before. It was a present from the Make a Wish Foundation. The gratitude and appreciation for the organization and the people who donate their time and money is immensely appreciated. One can't walk away from the experience without feeling the love and care the organizers put into the effort. Pictures, videos and details will follow. We will never make them public since this is all so personal and as a respect to Shane and David.
--Jess
Jake will keep his port for at least six more months after treatment so that he can get his monthly pentamadine antibiotic to prevent him from getting a rare lung bacteria. We will have clinic visits every month next year but no more chemo. We are planning and saving for a big Disney vacation on New Years Eve so that we can properly celebrate.
We are starting to see Jake's unique personality. I definitely do not believe in the "tabla rasa." He has mannerisms and opinions about things that are his own. He has his way with the ladies and makes friends very easily. He is a sensative child that hates to get scolded. I hope he doesn't turn out to be a perfectionist because we will drive each other nuts.
We just got back from a special weekend trip to Louisville, KY to visit Shane and David from "The Upside Down Show." The duo are Jake's idols and during the whole experience Jake did not stop smiling and launghing. We felt joy vicariously through Jake like never before. It was a present from the Make a Wish Foundation. The gratitude and appreciation for the organization and the people who donate their time and money is immensely appreciated. One can't walk away from the experience without feeling the love and care the organizers put into the effort. Pictures, videos and details will follow. We will never make them public since this is all so personal and as a respect to Shane and David.
--Jess
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