Make A Wish

We forgot to mention that "Make A Wish" came to our home last week. Colleen can't take a trip until after September 2006, so they just came to meet her and get her likes and favorite things and do the paperwork. We showed them a photo of her great grandmother with Stevie Wonder. Colleen's Grandma Beneduci was Stevie's teacher. She taught blind students in Detroit. Grandma died exactly nine months before Colleen was born, so she never got to meet her, although Grandma did meet William and Ben before she died. Colleen loves Stevie Wonder's music, although she couldn't tell you who he is unless he was one of the Wiggles. We thought that even if Colleen doesn't voice that she'd like to meet Stevie, maybe he would want to meet her. Other than maybe a trip to Disneyland or something similar, we asked about National Media attention to get Ben Brandon's adoption to happen. Colleen loves her brother, and he still is not our child. Today we met with the new DHS adoption worker, and it did NOT go well. First she met with Ben at school ALONE and what he told us she said is disturbing to say the least. The worker also told us that the earliest we could go for adoption would be late January. Colleen wants her brother to be her LEGAL brother, and if Make A Wish can make that happen, that would be the BEST WISH EVER! Please continue to pray for our entire family. Thank you so much.

No Pole this Year

Colleen went to clinic yesterday. She can not go to the North Pole because the plane will be filled with more than hematology and oncology patients. She is too close to her transplant, so the risk of infection in such close quarters with about sixty other kids plus adults is too high to take a chance. She is first on the list to "fly" to the North Pole next year. The good news is her hemoglobin is 10.1 and she is doing great. A bit of a cough and sneezing started Monday, hopefully she will recover without incident. She is eating pretty well, but she still lost a few ounces. Her favorite foods continue to be oatmeal, waffles, and macaroni and cheese. We are still asking for continued prayers for Colleen and our entire family.

North Pole

Looks like Colleen will be able to fly to the North Pole on December 12. She will be at day 101 post transplant, and if she is healthy that week, she can board a Northwest Airline with Dad and other pediatric patients and "fly" to see Santa Claus! Northwest has been taking this trip for years. It always makes the local news. Please continue to pray that she remains healthy.
Colleen only needs IV medication fluid two hours per day. This is much easier then the original 14 hours a day when she was first discharged. Also, last clinic day she started the oral medication "magnesium" that she is getting in the IV currently. The goal is for her to take the oral, then she can stop the IV at home altogether. Unfortunately, it is giving her the "runs" again, which was a predicted side effect. We will she what happens at Clinic next week. It would be teriffic if she could have all her medications orally. Currently she takes SIX or Seven different oral medications (depending on the day) and two other medications depending on how she is doing. She has not needed her blood pressure medication for over one month! She is doing GREAT.
Please note that we added a Pay Pal button, if you want a copy of the MACARONI and CHEESE cookbook, just click on pay pal.

Clinic Days

Colleen only goes to clinic one day per week now. She went Monday and we were there for four hours. Some days it is just a short visit, and other days are like yesterday. Of course, that was the day I took our 2 year old daughter along, it was a LOOOOOONG clinic day with two girls in toe. Her port was flushing, but not drawing, so after an hour and a half in the blood draw station and a changed needle with no success, we went to clinic. There I told them immediately that blood was not drawn only to be told by one nurse that the computer said it was pending. Pending?!? I felt like she was saying "Mom, you don't know what you are talking about". So, of course it was an hour later before "eurokaniase" was ordered to get her blood drawn because aparently the computer was still pending. After she saw the doctor Colleen was allowed to play in the PLAYROOM! Oh joy. That was worth the visit, as she had been banned from there until yesterday. Then we were off to the Pharmacy, where it took another hour to get authorizations from Medicaid for one of her new medications. But they have a television, so with Dora on Nick, the wait was tolerable.

TPN

Colleen had her last TPN (IV nutrition) on Wednesday night. Now she is on a two hour infusion of fluid with magnesium. Friday night is her last dose of antibiotic. She has gone from 14 hours a day of IV infusions, to 4 hours a day to 2 hours a day on Saturday. She returns to clinic on Monday. However, she vomited twice yesterday and the diarrhea has not subsided. Please keep her and our family in your prayers.

SURGERY

Susan took Colleen to clinic on Tuesday November 1, 2005, and her blood work made it an emergency to take out the Broviac. Colleen was sent from the BMT Clinic directly to the operating room, where we waited and waited and waited, and then waited some more. She was added to the surgical schedule and they estimated 4 PM for her procedure, but it was 5:30 PM when the surgeon took her to the operating room. The surgery went well and she has been recovering at home since then. Tuesday was a LONG day, leaving at 8 AM for a 9 AM appointment and not getting home until 8 PM. Now that the infected broviac has been removed, she has her port accessed at home. Colleen still receives 12 hours of IV nutrition a day plus antibiotics twice a day at home for a total of 14 hours "hooked up" to the I.V. tubing. It is a blessing that most of those hours are at night. Thank you for your prayers.

Colleen gets home in time for Halloween

Good news!
Colleen was released from the hospital in time for Halloween. She could not go begging but she was able to get into her costume.