What makes this all so interesting to me is that I have been complaining in the past about the missing common sense that is put in action and the power trips I observed in the past from some TSA employees. However, most of my issues of course came from the effects of traveling after 9/11 and on top of this making lots of trips with our boys from the time they were small. Trust me when I tell you it was no fun having to argue my case as to why I need so much baby food, formula and Baby Powder whenever we were heading for Germany. However, I found out that a lot of the TSA Employees we encountered since Connor got sick were actually very kind and considerate. Now here is the part I do not understand... How can procedures vary so much from Airport to Airport? I travel with the same luggage and Medications for Connor now for over 9 months and there are places where everything gets checked and then there are Airports where I walk right through with no questions asked at all. What I found scary is the part about the Airports that were the most relaxed ... one was Miami and the other Orlando. Now Miami is a port city so I would have expected them to be more stringent, instead Denver is the hardest of them all. Dallas, Chicago, D.C. where about medium.
Just a thought .... I wonder if there was a way I could earn money being an under cover Mom with twin boys testing out different Airports and the efficiency of TSA workers - haha
As to Connor and his JDM news there actually will be some changes in the near future regarding his medications. Dr. Soep and I talked about the fact that we will not change anything until after we get back from Germany but once we are home again we will start weaning Connor off the Cyclosporin and instead up the doses of Methrotrexate from 0.6 ml to 0.8 ml. We will stay on the once a month IVIG and Solumedrol Infusions but we will cut back on the Prednisone. Dr. Soep told me she had a long conversation with Dr. Pachman and Dr. Curran as well and they did agree that this should be a good approach. This is very exciting news even if we are just shifting medications in some regard, less of some, more of another. The truth is, Connor has not gotten worse but seems to be at a standstill.
Now here is one part of the news today that might not seem so big but was huge for me :) When Connor went on the scale this morning he weight in at 21.2 kg. I asked the Nurse if Alexander could stand on the scale as well and he weight in at 20.7 kg. This is 46.7 lb for Connor and 45.6 lb for Alexander. This is the closest they have been in weight again for 10 months!!!!!!!!!!! of course, Connor is still shorter then Alexander but still, I am so happy. Even Dr. Soep told me that the first thing she noticed when walking in the room was how narrow Connor's face was getting :) and when we left Judo last night and the boys both had their winter hats on and Winter Jacket the other kids said to me that I should not dress them alike because they don't know who is who :) they said the only difference were the hair and with the hats you could not see it. Gosh how I loved hearing this!
There also in another news factor I got from Dr. Soep and one I need to talk about with my husband. Dr. Soep had talked to one of the Surgeons who put in the Medi Port and she said that in her opinion he should be able to partake in Judo. She felt that the port was pretty set and unless the impact was very violent it should be okay. Now, luckily Dr. Soep did not tell me this in front of Connor so that it will be up to Ron and I and not have his hopes build up and then we decide against it.
So, once again I am wishing you a Happy Thanksgiving! I for one are going to enjoy the warm weather here in TX which is in the 60's and 70's right now. It sure beats the 9' F we had at home when the boys and I left the house at 5:45 AM :(
Hugs,
R A C A
No comments:
Post a Comment