Thursday, November 18, 2010

Challenges of Infusing without a port

I'm going to make this as simple as possible. We recently had our six year olds port removed because it was infected. (That is another story) We're having a terrible, stressful time trying to infuse him. His veins aren't good and he's terrified of needles. He just got to the point at age six to let us infuse him in his port. It has caused the whole house to be stressed and at times yelling. We can't yell, I don't want this to be a punishment because we can't infuse him. He just cries and won't sit still at all. We've had to lay on him and then miss. When he stresses and we stress it doesn't work. I did get his vein once and he had the biggest smile on his face like it was Christmas I, went in the other room and cried. It has been emotionally and physically hard for us all. Anyone have any good ideas of how to get his veins to come up and help him not to be so stressed. We're trying more water and a heating pad. A favorite tv program won't do the job. His focus is on the needle and nothing else. On top of it all the poor baby has been in the hospital since school started 23 days. It's been a rough year. I plan on blogging about his experiences with the frequent hospital visits.


I received an email where a family had problems with the neighbors thinking that thier hemophilia was contagious. Has anyone every had this problem before, if so please share how you handeled it

Wednesday, November 17, 2010

NHF - New Orleans - WOW

Just wanted to share with everyone the excitement and friendships I experienced at NHF this past week. My dauaghter, Kristin who also has mild Hemophilia and I traveled to New Orleans on Sunday.. We went early so we could spend some mom and daughter time. We visited the swamp, toured the city saw all the sights, including Katrina disaster that is still very real there a lot has not been rebuilt. We really ate and drank our way throught the city. Since We were there early we were invited to the JNC AWARDS DINNER the JNC is the Junior National Championship that goes on during the summer months and the winners are brought to NHF as a prize and receive awards at a banquet ...Congratulations everyone who participated
NHF officially started on Thursday, they had many sessions that day prior to opening meeting.
If you have not been to NHF you need to go at least once. There is never a stranger. Everyone one there is connected to the Hemophilia Community.
Thursday evening the exhibit hall opened and the manufactures, home care, agencies and chapters have booths with tons of information, friendly faces, answers and fun stuff for you to take home. I got a tatoo at the CSL booth.. I sure have had fun with it these past few days. ok it is not real, and about to come off but it was fun, that was just one example of fun.
I attended sessions durning the day on Friday, many sessions were available to choose from, something for everyone and that night we attending the Unity Jam where Suzanne and I were there for the Hemophilia Moms and visted with many family's while they had fun listening to Music,playing games, eating, dancing and just plan having fun, making new friends and building relationships for life.
Saturday was the last day, with more sessions, more food of course, the awards luncheon where people in our community are reconized for outstanding accomplishments. The exhibit hall was open also on friday and Saturday giving everyone time to visit and revisit those booths and make those releationships. Saturday night in the final night event and it was at the New Orleans float Factory, more food, friends and fun for all.
It is allways sad in a way on Saturday because Sunday you have to go home. But you always take back with you more knowledge, memories, and new friends and renewed friends tell the next year. Keep in touch with those friends by face book, our blog and sometimes just give them a call and say hi, you are allways welcome to say hi on my facebook page as well

I am looking forward to next year in November again in the Windy City Chicago, save your pennies and see you there