MomTo4+more
Mouseketeer
- Joined
- Jun 27, 2009
- Messages
- 337
Hi everyone Wow! These boards can be overwhelming with all the awesome info and incredible stories! I am glad I stumbled upon it in my on-line searches today.
I guess I will introduce my crew first. I am a single mom to three adopted children - maybe soon to be four. Nidra is 10. She was my first foster child, and I was happily surprised to be able to adopt her. She is friendly, helpful, inquisitive, and a joy to be around. Chantae is 7. She is a smart, articulate, gentle hearted child. Michelle may be my fourth child. I have had guardianship of her since February, and her mom just asked me if I would keep her. We will be talking more next week. Michelle is profoundly deaf because of meningitis and two strokes in infancy. She is a year old now and recently got bilateral cochlear implants. She is doing amazingly well and is even starting to use a few words!
Then there is Deyki - my make-a-wish child. Deyki is 5. He came to me at 6 months old after spending 3 months in a nursing home for children. He was born addicted to cocaine and was diagnosed with sickle cell disease at a week old. Deyki has had about 36 hospital admissions for pain, blood transfusions, acute chest syndrome, asthma, pneumonia, spleen sequestrations, and other sickle cell complications. At two years old they removed his spleen because of repeated life threatening events where he almost bled out into his damaged, greatly enlarged spleen. Living without a spleen leaves him immune compromised, but it was the best option. At three years old Deyki was diagnosed with Chiari 1 Malformation. At four he was diagnosed with moya moya syndrome. A year ago this week we started Deyki on hydroxyurea, an oral chemotherapy med to help with his blood counts. It has worked really well. His moya moya is improving - almost gone. He has only been admitted once for pain and three times for illness this past year. He isn't in as often now, but when he is admitted he is a lot sicker. We spent this Christmas in the PICU and were back there again a week or so after Easter. To top it all off, Deyki has multiple life-threatening food allergies that make it tough to feed him anywhere but at home.
Last week Deyki asked his hematologist if he could have a Make-A-Wish, and she said yes. I e-mailed a referral to our local branch and heard back from them the next day. They faxed the paperwork to his doctor on Thursday and said they would call again when she sends it back.
Deyki wants to go to Disney and spend his birthday with Spidey. He hopes to ride the Spiderman ride with Spidey himself. He wants to fight Darth Vadar with a light saber. We are eagerly awaiting the call back from MAW. I don't know if it's unrealistic to hope they could coordinate all this by his birthday in October or not. We will be at the hospital for the baby next week. Maybe I will be able to find out if they receive the FAX from MAW this week. It all seems fairly surreal right now!
I guess I will introduce my crew first. I am a single mom to three adopted children - maybe soon to be four. Nidra is 10. She was my first foster child, and I was happily surprised to be able to adopt her. She is friendly, helpful, inquisitive, and a joy to be around. Chantae is 7. She is a smart, articulate, gentle hearted child. Michelle may be my fourth child. I have had guardianship of her since February, and her mom just asked me if I would keep her. We will be talking more next week. Michelle is profoundly deaf because of meningitis and two strokes in infancy. She is a year old now and recently got bilateral cochlear implants. She is doing amazingly well and is even starting to use a few words!
Then there is Deyki - my make-a-wish child. Deyki is 5. He came to me at 6 months old after spending 3 months in a nursing home for children. He was born addicted to cocaine and was diagnosed with sickle cell disease at a week old. Deyki has had about 36 hospital admissions for pain, blood transfusions, acute chest syndrome, asthma, pneumonia, spleen sequestrations, and other sickle cell complications. At two years old they removed his spleen because of repeated life threatening events where he almost bled out into his damaged, greatly enlarged spleen. Living without a spleen leaves him immune compromised, but it was the best option. At three years old Deyki was diagnosed with Chiari 1 Malformation. At four he was diagnosed with moya moya syndrome. A year ago this week we started Deyki on hydroxyurea, an oral chemotherapy med to help with his blood counts. It has worked really well. His moya moya is improving - almost gone. He has only been admitted once for pain and three times for illness this past year. He isn't in as often now, but when he is admitted he is a lot sicker. We spent this Christmas in the PICU and were back there again a week or so after Easter. To top it all off, Deyki has multiple life-threatening food allergies that make it tough to feed him anywhere but at home.
Last week Deyki asked his hematologist if he could have a Make-A-Wish, and she said yes. I e-mailed a referral to our local branch and heard back from them the next day. They faxed the paperwork to his doctor on Thursday and said they would call again when she sends it back.
Deyki wants to go to Disney and spend his birthday with Spidey. He hopes to ride the Spiderman ride with Spidey himself. He wants to fight Darth Vadar with a light saber. We are eagerly awaiting the call back from MAW. I don't know if it's unrealistic to hope they could coordinate all this by his birthday in October or not. We will be at the hospital for the baby next week. Maybe I will be able to find out if they receive the FAX from MAW this week. It all seems fairly surreal right now!
I am so glad that you guys are going to be able to go to Disney!
Go with your gut on this one. It's a tough decision!
