Hopefully you've missed me too...
So many things to discuss-and what better time to catch up than on my first day off :) , while the little man is at daycare?
To start with, Caden had a great first birthday party, with lots of friends and family who brought awesome presents and also generously made donations in his name to Sick Kids-thanks so much to all who were able to share in such a special day!
Caden had so much fun playing with his little friends and cousins
Still can't believe he's a year old already...
I guess the next big thing that happened was our semi-impromptu trip to NYC to attend a conference put on by the "Vascular Birthmark Foundation". I had heard about the conference (which happened Oct. 8/10) a couple of weeks prior and had half-jokingly mentioned to Dave that we should take a road trip to Manhattan for the weekend. Next thing we knew we were making the trek with a one year old in tow! I have to say Caden was so good for the drive-especially the way there. He had a couple of naps, and otherwise just played with some toys, read/ate some books and enjoyed the scenery, with very little fussing. Here's a pic from about halfway through the drive there
The reason the conference originally sparked my interest was that not only would there be renowned experts in both KTS and the treatment of port-wine stains presenting some of the latest research, but those attending would also be seen and assessed in individual clinic appointments with said experts. I think it is always valuable to get a second (or third) opinion for any health issue, so the chance to have Caden assessed by these physicians was too good to pass up. Add to that the free night in the hotel and we were sold :)
Overall, the conference was good. The presentations gave some valuable information, and also confirmed much of the online reading I'd already done-they also provided a great opportunity to network with other families who are in similar circumstances. There were many people in the clinic appointments with widely varied conditions, some of them heartbreaking.
The clinic appointments were broken up into 4 or 5 "teams", each team comprised of 4-6 of the specialist physicians. We had requested to be seen by both the "KTS" and the "Portwine stain" teams, but ultimately got shuffled around to all of them, including the "hemangiomas" and "head and neck malformations" teams.
To summarize the experience, I will say that most of the physicians were excellent, providing input on Caden's condition and giving us advice for follow-up and possibilities for laser treatment etc. and of course they were all charmed by Caden who was chatting and flashing his smile at everyone :)
However, there was one doctor (a plastic surgeon) on the head and neck malformations team who was horrendous. He took a look at Caden and declared (for the benefit of the other physicians in the room) "well, what we have here is unilateral hemi-hypertrophy...blah, blah, blah" which is just doctor-speak for one side is bigger than the other. I let it go because I wanted to see what other brilliance would come out of his mouth, and he continued on saying that he could treat the swollen right arm by removing the skin, placing abdominal tissue expanders, and then grafting the non-affected abdominal skin onto the arm (!!!!!).
I couldn't take it any more, so I said "that sounds a bit drastic, don't you think?!" Of course not-this was a totally feasible treatment option in his eyes, so we quickly tried to wrap up the visit, and were relieved when there was a knock at the door telling us our time was up. Just to give an indication of how big of a jackass this guy is, a few days after arriving home I opened the file he had returned to us, and not only did it include Caden's info and pictures, but also ten other patient's charts/photos! Needless to say they have been shred, and an email forwarded to the organizer of the conference.
Things that we did come away from the conference with:
-we need to ensure that absolutely nothing can be done on a vascular level to help with the lymphadema, and we were given the name of a physician in Montreal who was recommended to get a second opinion.
-the portwine stain may be more difficult to treat or more resistant to treatment based on the location (arm/hand) and the underlying condition. Laser treatment is less effective over areas of hypertrophy/lymphadema. This however does not mean that we should not treat the areas, it is more of a disclaimer, and the laser could be quite effective on the chest/back/neck.
-Laser treatments are most definitely more effective the earlier they are done. There is no reason to wait to do the treatments (except for ensuring nothing can be done with the underlying condition first). In fact the research shows that the best results often happen when treatments are initiated in early infancy.
There's still more to catch up on, including the start of daycare, me going back to work, a haircut and Caden on the move, but I'll save it for next time-lunch beckons...
