Amerch
Earning My Ears
- Joined
- Apr 8, 2012
Got our our flight times!! I am excited that we leave Philly at 930 am fly into Orlando at Noon on 10/1, and then depart at 150 in the afternoon on 10/7.
Those times are good...other than I am wondering about needing to leave at 330 am on the day we depart to make it to the airport on time. Get trough security with 4 kids and board . Kids ages 3-7 .
Our wish coordinator said we will get are packet 2 weeks before are trip . We have a small car and with luggage we will not all fit . They said they can do transportation but then what do i do with the kids car seats till we get back ?
Trying to decide if we should drive over the night before and get a hotel room though..
When they provide transportation how soon before your flight do they get you to the air port ?
On to the not so good . Just when we think John is making progress.
Not the best news but news . Johns anc is down to 1341 .They now know as well that he is Steroid dependent for his GVHD.. When he turns 4 he will need to see the bone Drs. There is a concerns of the development of Osteoporosis .
Next Chop is planing to start doing photopheresis; by the end of the year, They have the drs trained and are getting every thing in place . Just dont have every thing set up yet. Now we keep doing thee meds and Wait .
For this once again we will be split up as a family for 3-8 months for his treatment . One of us will stay home with the other 3 kids due to school . We cant afford the drive 2-3 times a week ...
Those times are good...other than I am wondering about needing to leave at 330 am on the day we depart to make it to the airport on time. Get trough security with 4 kids and board . Kids ages 3-7 .
Our wish coordinator said we will get are packet 2 weeks before are trip . We have a small car and with luggage we will not all fit . They said they can do transportation but then what do i do with the kids car seats till we get back ?
Trying to decide if we should drive over the night before and get a hotel room though..
When they provide transportation how soon before your flight do they get you to the air port ?
On to the not so good . Just when we think John is making progress.
Not the best news but news . Johns anc is down to 1341 .They now know as well that he is Steroid dependent for his GVHD.. When he turns 4 he will need to see the bone Drs. There is a concerns of the development of Osteoporosis .
Next Chop is planing to start doing photopheresis; by the end of the year, They have the drs trained and are getting every thing in place . Just dont have every thing set up yet. Now we keep doing thee meds and Wait .
For this once again we will be split up as a family for 3-8 months for his treatment . One of us will stay home with the other 3 kids due to school . We cant afford the drive 2-3 times a week ...
It really sets in how close it is once you get all your paper work in the mail as it did now for us
