josabbimommy
Mouseketeer
- Joined
- Apr 5, 2009
I'm going to start my Pre Trip MAW Report by telling you a little bit about why we're going on a wish trip.
My husband (Chris) and I are high school sweethearts. We got married two weeks after I graduated from college and we're pregnant within six months of getting married. While this was not the plan, that's the way it happened. We were happy to be having a litte boy, who we decided to name Joseph Franklin (after his great grandfather and grandfather). I went into labor on the one year anniversary of Sept. 11, but didn't deliver until the next day. I had a traumatic delivery experience that culminated with an emergency csection. It was not a good experience. But we had a beautiful baby boy that looked exactly like his daddy. I was excited to be a new mom and couldn't wait to start doing all those mom things. When our son was 4 months old I went back to work and everything was going really well. We had close family members that watched our DS while we were working and being a nurse, I only worked a few days a week anyway. Then one day while at work my husband called to tell me that I needed to get to the hospital, that our 5 month old son was unconscious and seizing and on the way to the hospital. I'm pretty sure my heart stopped at this point and I'm not sure how I drove myself to the hospital. It wasn't until late in the evening (the day was February 19th) that we found out our precious little baby had a tumor in his brain. After being transferred to the Medical College of Virginia, we found out DS had a rare, benign tumor of the brain that cause seizures, developmental delays, and many other yet to be found out problems. It was incurable and DS would never be a normal child. The diagnosis was a Hypothalamic Hammartoma. Now I'm a nurse and a medic on the rescue squad and handle things relatively well, but I don't handle bad news about my baby well.
So fast forward two years. DS has been having seizures for the past 18 months and they are getting worse and worse. No matter what we do, they keep on getting more frequent until eventually we can't tell when he's seizing and when he's not. The brain surgeon decides that surgery is the answer. They go in, take a small portion of the tumor out and declare him cured! A month later, he starts seizing again. We got back to the doctor. More medications, more tests, more therapy. We get Prenatal testing on the back I'm carrying and find out that she's (yes, my little princess that i always wanted) is fine. Our little Abbigail is welcomed into the world in late July. Three days into my hospital stay, we found out our little princess has a congenital heart defect. I am mad, very mad. I shouldn't have two children that have problems! I wonder what I did to deserve this, who did I make mad! It's hard for me to understand...but that's a different story completely.
So a year goes by, and DD has an interventional cath to correct the defect in her heart. We're all maintaining. Joseph is in Kindergarten and doing well. He's playing soccer and t-ball. But he's still having seizures and isn't progressing in Speech therapy like he should be. The surgeon recommends to go in and get the rest of the tumor out. We schedule the surgery for July 10th. I take two weeks off from work figuring it will be like his last surgery, where we went in on a Thursday and came home on Monday.
We got to the hospital (The VCU Medical Center in Richmond, VA) and Joseph is taken to surgery. We wait, and wait and wait. We hit the six hours mark (the amount of time the last surgery took) and I start to get concerned. The OR calls and says there still operating and it's taking longer than expected (Duh!). We wait and wait and wait some more. Finally, 10 1/2 hours after our son went back, he's transported up to the PICU. There were some complications during his surgery the doctor says. He lost a lot of blood. He has a titanium clip in his brain now, forever. He's very sick. He has a long complicated stay in the hospital that contains one set back after another. He's had a stroke because of the long clamp time. He has frontal lobe ischemia. He has a thyroid disorder, problems with his bladder and a thirst disorder. He gets MRSA and has a PICC line placed. He's in the hospital for months. He celebrates his sixth birthday in the hospital. He misses his sister's second birthday. I'm out of work for months at a time. It's a hectic and stressful time in our life. Then I get a phone call from a nice lady at Make a Wish. She says the Child life worker at MCV recommended my son for a wish and they need information on him. I'm amazed. The next thing I know, my son is home (for those keeping track, it's now October 08). The "Wish Team" comes and talks to my son. He says he wants to kiss the "pretty lady" (Snow White) and see Dolphins.
So we have confirmed our trip dates.
May 22-28th and we'll be staying at GKTW. We're all so excited (except the hubby, but he'll get there eventually).
DD Abbigail, Niece Nichole, DS Joseph.
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Halloween 2008
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Joseph at his sickest.
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My husband (Chris) and I are high school sweethearts. We got married two weeks after I graduated from college and we're pregnant within six months of getting married. While this was not the plan, that's the way it happened. We were happy to be having a litte boy, who we decided to name Joseph Franklin (after his great grandfather and grandfather). I went into labor on the one year anniversary of Sept. 11, but didn't deliver until the next day. I had a traumatic delivery experience that culminated with an emergency csection. It was not a good experience. But we had a beautiful baby boy that looked exactly like his daddy. I was excited to be a new mom and couldn't wait to start doing all those mom things. When our son was 4 months old I went back to work and everything was going really well. We had close family members that watched our DS while we were working and being a nurse, I only worked a few days a week anyway. Then one day while at work my husband called to tell me that I needed to get to the hospital, that our 5 month old son was unconscious and seizing and on the way to the hospital. I'm pretty sure my heart stopped at this point and I'm not sure how I drove myself to the hospital. It wasn't until late in the evening (the day was February 19th) that we found out our precious little baby had a tumor in his brain. After being transferred to the Medical College of Virginia, we found out DS had a rare, benign tumor of the brain that cause seizures, developmental delays, and many other yet to be found out problems. It was incurable and DS would never be a normal child. The diagnosis was a Hypothalamic Hammartoma. Now I'm a nurse and a medic on the rescue squad and handle things relatively well, but I don't handle bad news about my baby well.
So fast forward two years. DS has been having seizures for the past 18 months and they are getting worse and worse. No matter what we do, they keep on getting more frequent until eventually we can't tell when he's seizing and when he's not. The brain surgeon decides that surgery is the answer. They go in, take a small portion of the tumor out and declare him cured! A month later, he starts seizing again. We got back to the doctor. More medications, more tests, more therapy. We get Prenatal testing on the back I'm carrying and find out that she's (yes, my little princess that i always wanted) is fine. Our little Abbigail is welcomed into the world in late July. Three days into my hospital stay, we found out our little princess has a congenital heart defect. I am mad, very mad. I shouldn't have two children that have problems! I wonder what I did to deserve this, who did I make mad! It's hard for me to understand...but that's a different story completely.
So a year goes by, and DD has an interventional cath to correct the defect in her heart. We're all maintaining. Joseph is in Kindergarten and doing well. He's playing soccer and t-ball. But he's still having seizures and isn't progressing in Speech therapy like he should be. The surgeon recommends to go in and get the rest of the tumor out. We schedule the surgery for July 10th. I take two weeks off from work figuring it will be like his last surgery, where we went in on a Thursday and came home on Monday.
We got to the hospital (The VCU Medical Center in Richmond, VA) and Joseph is taken to surgery. We wait, and wait and wait. We hit the six hours mark (the amount of time the last surgery took) and I start to get concerned. The OR calls and says there still operating and it's taking longer than expected (Duh!). We wait and wait and wait some more. Finally, 10 1/2 hours after our son went back, he's transported up to the PICU. There were some complications during his surgery the doctor says. He lost a lot of blood. He has a titanium clip in his brain now, forever. He's very sick. He has a long complicated stay in the hospital that contains one set back after another. He's had a stroke because of the long clamp time. He has frontal lobe ischemia. He has a thyroid disorder, problems with his bladder and a thirst disorder. He gets MRSA and has a PICC line placed. He's in the hospital for months. He celebrates his sixth birthday in the hospital. He misses his sister's second birthday. I'm out of work for months at a time. It's a hectic and stressful time in our life. Then I get a phone call from a nice lady at Make a Wish. She says the Child life worker at MCV recommended my son for a wish and they need information on him. I'm amazed. The next thing I know, my son is home (for those keeping track, it's now October 08). The "Wish Team" comes and talks to my son. He says he wants to kiss the "pretty lady" (Snow White) and see Dolphins.
So we have confirmed our trip dates.
May 22-28th and we'll be staying at GKTW. We're all so excited (except the hubby, but he'll get there eventually).
DD Abbigail, Niece Nichole, DS Joseph.
Halloween 2008
Joseph at his sickest.
I can't wait to hear more about your planning and your Wish trip!!
