Three Appointments in One Week is Too Much!

Annie had three doctor appointments this week. I would never intentionally schedule a crazy week like this, but when we've been waiting six months to get into see two of these doctors, we just take what we can get. It also didn't help that Justin has been away at a pharmacy conference this week. I'm ready for a break from doctor appointments!

On Tuesday we finally got in to see our new urologist here for the first time. Annie has been suffering from chronic UTIs for the last 2 years--having about one UTI every other month. Our pediatrician just recently put Annie on prophylactic antibiotics to help prevent them until we could get in to see the urologist, and they've helped dramatically. So we were a bit disappointed, especially after waiting for 2 hours, when the urologist suggested just keeping her on the prophylactic antibiotics, even though he recognized that the Cipro she's on would have been one of his last choices of antibiotics to use prophylactically. So we were frustrated that he didn't want to put her on something better or safer or one that doesn't build a resistance so quickly, but since she is already resistant to so many, I guess that makes it hard.

The urologist did decide to run all the same tests again that we had done in Austin (VCUG, urodynamics test, and renal sonogram) but the next openings for those tests aren't until March. Oh well, I feel over-scheduled with doctor appointments now anyway, and in the meantime, the Cipro is still working.

On Wednesday Annie had a routine ophthalmology appointment. It was so super fast--I'm so grateful. Annie's vision appears straight--we've noticed even less crossing since we cut her baclofen dose in half.

On Thursday, we finally were able to get in to see our new neurologist here for the first time. He was so wonderful in asking about her complete history to really get a good idea of the type of seizures she's had in the past and what she's having now, as well as the different drugs she's been on to control her seizures. He was genuinely interested in her and was a fantastic listener--which we always love! He spent well over half an hour with us reviewing Annie's history and plan for treatment.

Annie's been on vigabatrin for 7 years now and the neurologist was a little surprised at that, but agreed that if it's working, we'll keep her on it. Although we all decided that we might want to get her off of it in the near future and try something else. Vigabatrin is known to cause peripheral vision loss and because of such serious side effects, was only FDA approved a few months ago--we've been getting it from Canada for 7 years. But the FDA is putting major restrictions on who can prescribe it and how patients can get it. So fortunately, our ophthalmologist and neurologist have been patient with us in getting all the paperwork completed so we can start receiving this drug from the U.S. and having insurance start paying for it.

We're grateful for the relatively smooth transition we've been able to make as we've moved, and we've met some great new doctors here for Annie, but we will always miss our team of doctors from Texas, most of which knew Annie from the day she was born. I'm also grateful to all my friends who so frequently and kindly welcome Lexie and Molly into their homes while I'm at all of Annie's appointments. We've truly been blessed with wonderful friends!

Jodi's Surgery Update

Surgery went very well. I only received local anesthetic and some versed, so I was able to watch the whole procedure. I was in a radiological suite with an x-ray camera over my abdomen and 6 monitors from which the doctor worked. It was fascinating to watch them work.

The procedure I had done was an embolization of the ovarian vein. Because of the stress that 3 pregnancies has had on my body, I developed pelvic congestion syndrome where the ovarian veins become incompetent causing blood to pool on the pelvic floor. It wasn't until today that I saw the "before" images. The vein appeared as a nice straight pencil-thin line then gradually swelled to maybe 20 times the normal size, then eventually turned into literally a round pool of collected blood. The doctor said he rarely sees this condition quite as bad as I've had it--said my images should be in a textbook!

So he inserted a catheter into the vein and placed 13 spring-like, metal coils over a 7 inch section of vein. The coils then released a clotting agent as they sprung open inside the vein, giving me 100% blockage in the incompetent vein now. This is not a picture of me, but one I found online that looked somewhat similar to my "after" images. I have a few more coils that what this picture shows.


I was surprised at how easily I tolerated the procedure, although the versed did have its side effects for the rest of the day. Now I'm just not supposed to lift anything for a couple days--harder said than done with an active 2 year old and a 50 lb daughter in a wheelchair! Now I just have to wait til December 8th for my phlebectomy which will give me the most relief from my symptoms.