Ava's history

Ava was born weighing 8 pounds 8 oz on August 13, 2008. She was what we thought a healthy baby. She latched on right away and fed beautifully, slept well and responded well to touch and voices. At two months she rolled over once but I never saw her do this again for a long time. She also began to smile. At five months she began to eat solid food and could easily tackle the mushed up baby food. We began to realize some different things with Ava than with our 3 year old at the same age. When Ava would try to bring her hand to her mouth, she kept missing. She would take several swings and sometimes would raise her hand to her mouth using her other hand. We thought it was pretty cute and were not worried. At six months I began to be slightly worried that she wasn't sitting. She had just begun to roll but one way only and hated tummy time. She would lay face down on the floor and bawl. Eventually after giving her ample floor time she began to lay there without crying but had difficulties lifting herself up. At around five months I noticed that she would startle quite often everyday. I thought maybe I was surprising her when I reached out towards her. At seven months I brought her to the docs because that is what the books said I should do. I wasn't really concerned, just trying to be a good parent. He set us up with a pediatrician and at eight months we saw one. He checked her over and said to come back at a year in the meantime we began physio and occupational therapy and signed up for speech. While making these appointments I was apologetic and felt that I was wasting their time because I knew Ava would suddenly start developing with a flurry. At eleven months I was very worried. Ava had not developed much from six months, she still could not put her hand to her mouth. She could now roll both ways but she still could not sit. Her jerks were more apparent (just awareness of it I think). I began to search the net and found something called startle seizures. Ava would sit on my lap and every time I scrolled down the page Ava would jerk. When she was an infant she had an exaggerated startle and at first I thought she was retaining her moro reflex and was in a constant state of fight or flight (my theory only). We went to see the pediatrician and he checked her over and said she had global developmental delay. He could not see any unusual look about her that would point to a genetic disposition. Although he did notice tiny folds behind the ears. I asked him about the startles she was having every five minutes now. He witnessed quite a few. I asked him if it possibly be seizures but he said no definitely not seizures...although it would get us in the neurologist faster. I was filled with an assertiveness very much unlike me and told the doctor to write down seizures. I didn't care what he thought or if they were or not as long as she got into the right care. That would be the first of many times so far that the mama bear in me would come out. At 12 months we went to the IWK for a neurology appointment. The eeg showed lines that to me looked like a child's messy handwriting. Huge scribbles that would go up and down across the page. The neurologist brought us into her office and let us know that Ava was experiencing myoclonic seizure activity every five seconds according to the egg. At first I felt relief because I figured we found the reason for her delay. Now all we had to do was stop the seizures and my baby would be alright. The neurologist dashed that almost immediately saying that seizures do not cause delay, but more likely her seizures and delay are caused by the same thing. (That is yet to be determined in my heart or by her diagnosis or lack thereof).
She took blood and urine samples and prescribed valproic acid. She also warned us that the medicine could pose a risk to her young liver and to watch out for signs like yellowing of the eyeballs.
When we got her on the beginning dose of meds, her startles seemed to reduce. She learned to sit! What a miracle that was to see. She was raised up to her next dose the same day she started swimming lessons at 14 months, she began to babble saying ma ma, ba ba, num num and nigh nigh for two days then stopped. I noticed that on the day she increased her meds she would get a flurry of activity and then stop. After a week on the med dose seizures would begin to creep up again.
While playing with dosages we started really aggressively promoting Ava's development. At home I would take the things I learned at physio or early intervention and work with it. I also would attempt a few MacGaiver moves of my own. I attempted to get Ava in four point by laying her on a kids skate board cushioned by a blanket. I would wrap a 2-litre plastic bottle of pop in a heavy sock and stick it under her belly (boy did she get mad, but it worked). I would sling a sheet around her torso and pick her up just enough to provide support so that she could experience weight bearing on her hands. We nicknamed her Rocky and would hum the theme song 'getting stronger' every time we would begin a session.
The biggest problem for Ava is that she would get tired. She would work for five minutes and need to rest for five minutes. She looked exhausted all the time. Seizure control was not working to my satisfaction and it was time to find another alternative.