Disney World February Trip

Mark found cheap airfare to Tampa and on Friday 2/9/07 Susan took Mike, Colleen, and Jillian to Florida for a quick weekend. Donna's next door neighbor picked us up at the airport. We borrowed grandma's car for a trip to Orlando on Saturday, and spent most of the day at Disney World. Mike tried to arrange visits with his friends, but couldn't work out any time together. We took our expired Disney Disabled Pass, Make-A-Wish t-shirts, and Colleen wore her expired GKTW button. Despite the December dates, she was honored as a Make-A-Wish visitor and we once again experienced VIP treatment. We were taken into fast pass lines, through back
entrances, and via exits in order to have quick entry to all the rides. We also took her to see all the characters with VIP access to see them. What a treat!

We left the theme park about 7 PM and headed to Give Kids the World village. The four of us were welcomed as a "Welcome Back Family". Susan tried to purchase dinner tickets, but they refused and told us meals there were ALWAYS free to Welcome Back Families. It was Mayor Clayton's birthday party, and we enjoyed the festivities. Colleen and JJ made pillows and played in the Castle. Colleen took a few rides on the Merry Go Round. Then Colleen and JJ took train rides at Amberville Station and at 9 PM when the village was closing up for the evening, the theatre gave us pop and candy for our trip back to Tampa.

Sunday we went to church with Grandma and Grandpa. After church we came back to the house to find a big "accident" poor old Miles had all over the front room carpet. He is 14 and acting his age, poor old boy. On the other hand, Susan's parents are doing very well. Sunday afternoon Donna and Susan took the girls to the gulf and they played in the surf and collected shells. Mike and grandpa stayed home and napped. The girls also visited the pier and then a playground.

Monday morning the shuttle picked us up and we flew home. It was a great weekend.

Kindergarten Registration

Colleen is registered for kindergarten this fall. While other parents brought a few forms into the school office, Susan had a huge stack of IEP and other school reports, plus the immunization waiver among other reports. Colleen does not and will not have the required immunizations before kindergarten starts due to her BMT protocol and the CDC recommendations for bone marrow transplant patients. We included the UofM and CDC recommendation along with the waiver and her schedule of immunizations to the school. The secretary had to photocopy it all, and it was a chore to pull it all together, but she is REGISTERED. In May she will have a new IEP to transition her from preschool speech to grade school speech. Kindergarten round-up will also be in May. Our little baby is growing up. What a joy to have her participating in "NORMAL" childhood events!

January GI Appointment

Colleen saw Dr. Zoubi in January for her GI follow up. Her weight is the only concern. She is doing great everywhere else. Her prevacid medication was discontinued with two weeks of decreasing the dose to wean her off slowly. We need to "fatten" her up. She had a mild flu the week before her GI appointment, so the few ounces forward were obviously lost. Her appetite is excellent, so we do not anticipate IV feedings ever again! However, the debate regarding to keep her port or remove her port continues. From a BMT perspective, they want the port removed. From the GI perspective, Dr. Zoubi wants us to be very clear that it is the PARENT'S decision. Since her weight continues to be an issue we will leave the port in place and continue to do monthly flushes at home. She will return to the pediatrician in March for a weight check, and I scheduled her five year old check up for the same appointment.

December Neuro Psych Appointment

In December, Colleen saw the neuropsychologist at U of M. We got the report last week from Dr. Mary Best. The bottom line is Colleen's scores are very unusual, as only 4% of children get those divergent scores. This indicates that her IQ is very likely normal, she just doesn't have the language and experience yet to fill in the gaps. This would be consistent with her unique childhood and lack of "normal" experiences.

We had tremendous difficulty scheduling that appointment. Turns out there are two seperate Neuro Psych departments at U of M and we had been in contact with both. Dad took her to the appointment. The upsetting part is the "clerical" mistakes with the report. Dr. Best stated Dad's medical history was inaccurate and also indicated that the SEVEN school records we provided had not been provided. Therefore, we sent a letter with proof that the medical history dad provided WAS accurate, and also itemized the school records provided.

At the appointment, the entire Neuro Psych office was in a state of chaos and were in the process of moving. They mailed us forms to fill out and the postmark was 6 days before the appointment. Some forms needed to be filled out by Colleen's teacher, and we only had 24 hours to get that done and also get school records. We made a special trip to Kinkos to copy ALL the school records AND the forms they provided, and Mark handed there forms and the school records to the same person the morning of Colleen's appointment.

The report from Dr. Best indicated they got their forms returned, but they have LOST our daughter's school records. Dr. Best called Susan and indicated that she will correct the medical record portion, but they have been unable to locate the school records we provided, and also do not "admit" that we actually provided them. Susan was not there that morning, so she could only repeat what Mark said, the SAME person who collected the U of M forms also collected the school records.

The important part of the assessment was very comprehensive, but the lack of maticulous care for our daughter concerning everything surrounding this appointment is disturbing. The Neuro Psych experience was NOT typical of the excellent care our daughter has received everywhere else at the University of Michigan and Mott Hospital.