Sunday, April 29, 2007
Well my 35th birthday was celebrated at the National Canadian Cystic Fibrosis Conference in Cornwall this weekend. To start things off , at introduction, over 150 people sang happy birthday to me. At lunch time, the board allowed me to view Annika's Great Strides video on two theater size screens. So her video was shared with hundreds of people. ( there is a link to a similar version below). I got to spend some time with Heather Cariou , author of Sixty Five Roses, a sister's memoire. Annika said " Happy Burp-day mommy" ( her version of Happy Birthday) to me on the phone. The news was offically released about the cepacia vaccination, and the phase three trails on the vaccine, and to top things off at social hour in the hospitality suite....I put a challenge out there for all the people attending the conference to dig deep in their pockets for spare change and donate it to the Great Strides Walk. I raised $502.50 that night from spare coin. How will I ever top that birthday!
Sunday, April 08, 2007
Yes we are working on it! We got the forms back with suggested add ons. So we are working on our status. Mean while the local rotary club has offered to accept any vest donations on An Angel's Wings behalf, and issue a tax receipt. How kind is that? So we can start accepting donations, and our clients will receive a tax receipt for their kind donation. Welcome to the world of giving. Let's make some families happy!
Monday, April 02, 2007
I haven't had a chance to respond to anyone's posts, so please forgive me, I pray and hope everyone will be healthy and heal. For those who are not sick.....rock on!
Annika had her appointment at Toronto Sick Kids on Friday....we are staying in T.O visiting friends, and having some well deserved family time!
Well the results. Her chronic cough , according to the respiroligist and her x-ray are probably ashama linked, not cf. Her xray is congested, but no scarring(yeah!) So we are on prednisone for 5 days to see if it makes a differance. Her lungs are not a real concern to them right now, her size is. Which brings us to the issue of our visit to Toronto in the first place.
We are doing more fecal studies. We did blood on her and myself for celiacs disease. They suspect that we both have it. On top of cf.....boy did we win the disease lottery or what. A simple blood test will send us in the right direction with that study. If our blood comes back positive, then they to a biopsy of the deodeum to secure a positive result. Our diet will be even more fun then....lol! I shouldn't be laughing, but man....what else can I do?
So this is where we start first. For the next month we do the increased enzyme thing , like we have been doing already. She has already gained a pound in 3 weeks with that. If she starts to fluctuate with her weigh again then we do one month of Zantac to raise her ph level in her stomach to aid in digestion. In two months, we have to go back to Sick Kids. If things don't change then, with these two options, a GI Tube will be the next result. I guess they don't like doing them until they ruled out all other things( which I feel happy about) So in the long run we got answers, met the best GI doctor in Canada, and to top things off, he invited me as an adult to see him in Toronto, and for him to try to help fix my GI problems. He suspect(Quote) that my GI problems are not cf related, but possibly celiacs....we will find out soon.
So I am off to play with the kids, and hubby and I are going on a subway ride with them to our friends house for dinner tonight. We will be heading home tomorrow to start a new fecal study at the end of next month. I have to stop breastfeeding for 3 days, so it will be easier to do this when I got to Cornwall for the cf conferance, and I will be away from her anyways. Weighing food, liners in diapers, oh fun. But if it helps them decide what action to take next with her GI issues, than it will be worth it.
Talk to you later.
Kimberly in the big city( with no sex) lol!