Health updates

 Hey dear readers - I am in Delaware this weekend for a Morquio symposium and I had a doctor's appointment yesterday and I got some news that is less than good, but not quite at the level of terrible. I have been having trouble with my breathing for the past 3 months - but I've kept it quiet because I don't want to freak people out, the doctor wasn't sure if it was my allergies or what. So yesterday I had a repeat PFT (Pulmonary Function Test) and the numbers were the same as they were 3 months ago so my issue hasn't gotten worse, which is good. After my PFT I met with my pulmonologist who was totally calm about the whole thing, and that was great. He said I have to excersize more (we are getting a puppy soon so I will walk her) and the next time I come down here to see Doctor Bober I need to have a CT scan of my lungs and trachea, which was recently discovered to be a common issue for Morquio A patients even with the Enzyme because the trachea is cartlidge and doesn't have blood flow, meaning that the enzyme only goes in my blood and fixes things with my blood, so I have to have that when I come back next month when we return home I am going to be hooked up to a pulse ox for a night or two to see if I need a sleep study as for the fix, I have to use a nebuliser before I excersize and I need to have an inhaler of steroids twice a day everyday and rinse after the steroids starting on Monday. This isn't a big deal, but it's kind of a bummer because other than my hearing, this is the first piece of bad news we have had since the beginning of the trial, well we are on our way for day 2 of the conference thanks for reading guys!

Sarah