Let's start this off.

While Paisley is taking a nap I should go ahead and start from the beginning with this new blog. I was nineteen years old, a few semesters into college, working two part-time jobs, and pretty much living with my high school sweetheart, Brandon. I was on birth control, but took antibiodics everyday to supress my bladder/kidney infections I've been prone to getting. I was going to school for art and just could not do anything in my watercolor class. I came home tired and slept all day and could barely go to school and work. I went to the doctor, got diagnosed with hypothyroidism, and got a medical leave from school on October 1st. Something just didn't seem right, so the next morning I took a pregnancy test because I hadn't had a period and sure enough, it was positive.

Fast forward after an ectopic pregnancy scare, and some bleeding spells after that, I was laying in high-risk OB Dr. Roussis's office listening to my baby's heartbeat on October 28th. Everything was going swimmingly and I didn't even have morning sickness (only got a stomach bug a FEW times), and I knew that I was having a baby girl from day one. Oh, and I did have that ultrasound just to prove to everyone else. I was in my highest 125-130 pound range when I got pregnant and I started gaining weight and a round belly too rapidly... I started leaking fluid one day around five months pregnant and went to the ER. They determined it wasn't amniotic fluid, or an infection of any sort, or anything besides water really. That's when I knew I was retaining too much fluids and getting too big. I was put on monitors every week and Paisley would fail her non-stress test everytime due to her all day hiccups so we got to see her pretty face via ultrasound a lot.

My blood pressure started skyrocketing the first week of May and after peeing in a jug for 24 hours and having major headaches, Dr. Periclis Roussis admitted me into the hospital May 9th to induce my labor. I weighed 185 pounds... Paisley was born the next afternoon, after a super easy labor and 4 weeks early. She was perfect, she breastfed just fine, and even got to go home with me a couple days later. She developed jaundice and got to tan in a suitcase at home for two days.

Paisley was never sick and never cried, but I did notice that she could not see. I think I knew it before I even left the hospital, but no one believed me. At her two month check up, they told me that it's still too early to tell if she can't see. At her four month check up, they told me that she was a preemie and would catch up, but I insisted on going to pediatric opthamologist, Dr. Allyson Schmitt. At six months, they were finally concerned with her developmental delay and sent us. Paisley's eyes were perfect, except she had cataracts on each eye, but too tiny to cause any trouble... But the doctor agreed that at six months, Paisley was not tracking objects or reacting to the lights and suggested to have an MRI, because it could be neurological.

On November 28th, Paisley had to be put to sleep to have an MRI done of her brain and orbitals. It took less than 24 hours to call us back and tell us that it was her brain. Her brain had not developed in the womb and it was pretty severe. We got in the see the neurologist, Dr. Karsten Gammeltoft soon after because Paisley started to have little seziures. Dr. Gammeltoft showed us her MRI on December 7th and said words like "polymicrogyria", "lissencephaly", and "cortical dysplasia". He told us the best way to describe her brain was a "migration disorder" and that 100% of her brain is malformed. She had an EEG that day and he didn't see anything that stood out, besides chaos in a chaotic brain.

After her first EEG, Paisley started having more noticable and more frequent "seizures" that look liked she was just flinching in clusters. I knew they were "infantile spasms", which he warned us could make her regress. I called and the doctor put her on Topimax sprinkles and scheduled a six hour EEG for December 27. But on Christmas Eve, Paisley started having these seizure clusters all day, and even waking up in the night with them. We made it until the EEG where they saw her seizure activity and called the doctor on call since Gammeltoft was out of town. Dr. Anna Kosentka diagnosed Paisley with infantile spasms, doubled her Topimax, and added Keppra to it. She talked to us briefly about a hormone injection therapy called ACTHar to stop the spasms...

Now here we are today, waiting to see the genetic doctor tomorrow morning, waiting to start her therapy tomorrow afternoon, and waiting for a call from Gammeltoft about her medicines not being effective enough and whether or not we're going to do the ACTHar. Too much waiting. Wish us luck tomorrow!