syammt
Mouseketeer
- Joined
- Aug 9, 2007
OK so I am going to give this Pre-trip report thing a shot. Grandma (planningcrazymom) is on the boards a lot more than myself, but we wanted to share our planning and our trip with all that have helped us so far.
Our family.
Me - I am a work at home mom
Paula - grandma
Madison - My 7 year old angel and wish kid
I guess what I need to do next is tell about my baby girl, Madison. She is a very bright and active 7 year old. It all started when she was about 6-7 weeks old and I went to give her a bottle. I noticed that she had blood in her mouth from an open sore. They admitted her and ran loads of test. They didn't find anything at that time, but that actually was the beginning. When she was 10 months old she had to have a VP Shunt put in for water on the brain. They caught it early enough that she did not suffer from any side effects. As a toddler we were always fighting sore, rashes and bacterial infection on her skin. Everytime she got a throwing up virus we were admitted so they could run test to make sure her shunt was working correctly. Never (knock on wood) have had to have any revisions to her shunt. When she was 2 she started breaking bones. She has had a broken bone for every year of her life. When she was 4 her asthma started. While dealing with all the skin problems she would have to be admitted at least twice a year for viruses and they would always check her blood for staff and it always comes back positive. They tested her for allergies when she was 4 and she had a few things she reacted to, but nothing major. Which could not explain why her IGE levels where in the 10,000 and they should only be about 150. Finally got her to the correct doctors and they tested her for Job's Syndrome. It came back positive. Basically if you have Job's Sydrome you have no immune system or at best a very compromised immune system. We have had to start home schooling due to all the hospitalization and the treatments. She has one infusion (for her immune system) we do every month and another (for her low bone density) that we do every 4 months. Her official diagnoses are Job's Syndrome, Asthma, Osteoporosis, Oseteopenia, allergies and sores and bumps on her skin so bad the bleed and seep.
We got a call from the Special Wish Foundation due to the awesome public school she started first grade at last year before we started home schooling. Our dates are Oct 26 thru Nov 1 and are so excited about staying at GKTW.
We go Sept 14th to a local country club for her dinner where she will find out all the details about her trip.
Thank you in advance to all who read and follow our pre-trip. I will do my best to keep it up to date.
Our family.
Me - I am a work at home mom
Paula - grandma
Madison - My 7 year old angel and wish kid
I guess what I need to do next is tell about my baby girl, Madison. She is a very bright and active 7 year old. It all started when she was about 6-7 weeks old and I went to give her a bottle. I noticed that she had blood in her mouth from an open sore. They admitted her and ran loads of test. They didn't find anything at that time, but that actually was the beginning. When she was 10 months old she had to have a VP Shunt put in for water on the brain. They caught it early enough that she did not suffer from any side effects. As a toddler we were always fighting sore, rashes and bacterial infection on her skin. Everytime she got a throwing up virus we were admitted so they could run test to make sure her shunt was working correctly. Never (knock on wood) have had to have any revisions to her shunt. When she was 2 she started breaking bones. She has had a broken bone for every year of her life. When she was 4 her asthma started. While dealing with all the skin problems she would have to be admitted at least twice a year for viruses and they would always check her blood for staff and it always comes back positive. They tested her for allergies when she was 4 and she had a few things she reacted to, but nothing major. Which could not explain why her IGE levels where in the 10,000 and they should only be about 150. Finally got her to the correct doctors and they tested her for Job's Syndrome. It came back positive. Basically if you have Job's Sydrome you have no immune system or at best a very compromised immune system. We have had to start home schooling due to all the hospitalization and the treatments. She has one infusion (for her immune system) we do every month and another (for her low bone density) that we do every 4 months. Her official diagnoses are Job's Syndrome, Asthma, Osteoporosis, Oseteopenia, allergies and sores and bumps on her skin so bad the bleed and seep.
We got a call from the Special Wish Foundation due to the awesome public school she started first grade at last year before we started home schooling. Our dates are Oct 26 thru Nov 1 and are so excited about staying at GKTW.
We go Sept 14th to a local country club for her dinner where she will find out all the details about her trip.
Thank you in advance to all who read and follow our pre-trip. I will do my best to keep it up to date.
No one has said anything to her about dying, but I am told that kids pick up on everything and hear things even when you think they aren't around. Being very careful not to talk about anything bad around her. So anyway we have talking therapy and then an infusion. It's going to be a long day at the hospital. 
