Lots of appointments since I last wrote. Early July we found out Presley had pneumonia. As soon as the dr. said the word I started bawling right there in her office, it wasn't presley's regular doctor so she probably thought I was some crazy neurotic mom (well I guess I kinda am). The reason for my impromptu meltdown is because back in December when Presley started Prednisone her neurologist told us that two kids had died this year from pneumonia while on the same immune suppressing medicine. Presley has been off of that particular medicine for four months so it wasn't nearly as serious as if she had gotten pneumonia while still taking it but I just remembered that conversation and totally lost it! The day we found out she was sick was the same day Mark had left to go to Las vegas for his brother's bachelor party so my mom ended up spending the weekend with me so I wouldn't have to be by myself. The nurses gave Presley a shot of antibiotics (1/2 dose in each chubby little thigh) while we were in the office to get them in her system asap and we were told to come back the next day to follow up. Her lungs still sounded bad the next day so we were sent home with a breathing machine and instructed to give her breathing treatments 3 times a day. The treatments were hard enough to manage with a squirmy 13 month old but add in Peyton the protective older brother it was nearly impossible. The first time Peyton helped every time she started to cry he would start singing twinkle twinkle little star but after that treatment he would do anything to keep me from giving her another treatment! It was both cute and sad how worried and protective he was but he would scream at me and grab the mask out of my hands,unplug the machine and try to unplug the hose for the machine so I quickly learned I needed to do it while he was at preschool or asleep.
Presley got sick on a Thursday and we had planned a vacation to Oregon on the following Monday, the doctor thought she would be fine to go but being the extra cautious mother that I am I brought her in monday morning just to be sure. The doctor listened to her lungs and said she sounded great!! We were cleared to go and we had a great time! Presley must have needed a vacation too because she babbled more than ever and was such a happy girl on our trip. She went swimming for the first time which she LOVED! Peyton also had a great time bike riding, horse back riding, swimming, playing with his cousins and he even caught his first fish.
After returning from vacation we had a big day of appointments for Presley. First we had an EEG in Oakland which was normal!!! The neurologist said it was on the slower end of the normal range but it was still considered normal. I need to clarify exactly what that means but regardless of it being "slower" it's still normal which is great news. Dr. Hayward (the neuro) says that usually once the infantile spasms go away they will stay away but that Presley now has a 50% chance of developing another type of epilepsy. After the original grim prognosis 50% odds don't seem so bad to me. We now need to start weaning her off of the vigabatrin (the medicine that stopped her seizures) which terrifies me but needs to be done.
After we left Kaiser we went to the UC Berkeley eye center for an ERG (test on her retinas) to see if the vigabatrin has caused any vision loss. This test is absolutley HORRIBLE! I have to hold her down while doctors and students try to put in contacts with wires coming out and then I have to hold her little head in a dome shaped box which flashes lights and records how her retinas respond to the light. The results were fine but I decided during this test that I am never going to subject her to another ERG. I don't care if it's recommended I am NEVER putting her through it again. She sees an opthamologist in Santa Rosa so I'm just going to stick with him from now on.
The next day I left for Vegas for a bachlorette party and although I was nervous I was ready for some much needed me time. That didn't last long though when Mark called me later that day and let me know Presley had another fever which was actually pretty serious because our dr. told us if her fever crept up again it was a bad sign and we may need to take her to the ER. After another meltdown in the hotel hallway I finally talked to her pediatrician who calmed me down and told me she had an appointment to see Presley the next morning. Turns out presley still had some residual pneumonia so they prescribed another round of antibiotics hoping to wipe it out this time.
I came home on Saturday and the very next day Presley started developing a weird rash all over her body. I brought her in again (kaiser is seriously my second home these day) and found out she had Roseola. Luckily it's not a serious virus and since she had the rash it meant it was probably almost gone. At this point I'm done with my meltdowns and all I can do is laugh with the doctor about our luck.
Finally some good news! I took her in for a follow up on Friday and the both the pneumonia and the roseola are gone so she has a clean bill of health for now and we're hoping it lasts for a while this time. I have to take her in for a few shots tomorrow one of which has a very small chance of causing seizures so I'm super nervous, but sadly i'm pretty used to that feeling these days so off we go back to Kaiser tomorrow hoping for the best.
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