More seizures

Unfortunately, our 12 day streak with no seizures came to an end this afternoon. Today Meredith had 4 seizures. All of them similar to her other recent seizures, about 2 minutes long each. The good thing is she was not at daycare, she was home with Greg who had taken a vacation day today. We are discouraged, but not too surprised. We emailed the Neuro and he'd like to increase her dose of Trileptal again. In the meantime, Greg and Meredith had an interesting appointment with the Geneticist today. Dr. Harris and Greg talked about the introduction of seizures and whether or not this points toward any new syndromes. The doctor came up with a list of 22 potential syndromes that fit her revised list of symptoms. Then they cross-referenced all of them with what she has already been tested for and came up with.... ZERO new syndromes to test for. She has already been tested and cleared for every single one of them. Our little girl is truly a medical mystery. In fact, the geneticist asked if we might be interested in having her take part in a medical study that the Chief Geneticist is conducting on Microcephaly (small head measurement). This doctor felt that the Microcephaly alone could explain a large part of what's happening. But as we are accustomed to now hearing, no one knows. Little is known about Microcephaly and its prognosis. Especially in Meredith's case, since it does not appear to be associated with another syndrome or illness, as it often is. Her head has continued to grow on it's own curve, but she is still extremely delayed. It's hard to accept that we may never get any answers. But I get the feeling that over time, finding that "answer" becomes less important. Having an answer really doesn't change anything about this situation. But the wondering is very difficult. It's hard to constantly wonder - why did this happen? Was it something I did when I was pregnant? Is it genetic? Was it a fluke? Were we just chosen to be Meredith's parents because she needs us? Would it happen again if we had another child? There is a lot of guilt and a lot of fear associated with not knowing. The list of what if's and why's is endless. But that is a challenge for Greg and I, not Meredith. Our parenting experience is absolutely nothing like we had imagined and it is truly unique. We will learn to adapt and over time stop wondering why, and learn to just accept and appreciate what is. Meredith is happy. She doesn't know she's different from other children. So while we still have no answers, we are feeling at peace with this whole genetic testing process. We feel obligated to go to extremes to find any scrap of information that may help her, but in the end, we are actually comforted by not having a label for her condition. As my dad so simply put, she is who she is : )

Trying out my new stander!

Visit from Uncle John

Last weekend was one we had been looking forward to for quite some time because Uncle John was in town from San Francisco! It was so nice to have him home. We had lots of fun hanging out and we got to meet John's girlfriend Jackie and her son Graham. We quickly fell in love with them both and made sure the kids got in lots of quality time. Graham is absolutely adorable and I can't wait to see him again. His interest in feet and Meredith's interest in hands helped them hit it off right away : ) There was beautiful weather all weekend and after a brunch at our place on Easter Sunday, we went to the park and played with the kids for a while until it was time to send John, Jackie and Graham off... A great weekend.

This week we also made progress on the stander front. We were able to get our hands on a loaner stander which we will leave at daycare and we will still move forward with purchasing one that we can use at home. This way we won't need to transport it back and forth. Grandpa was nice enough to swing by the Early Intervention office on Monday and pick up the loaner and deliver it to our house. We learned today while trying to position her in it, that it's a tiny bit big for her. But in a couple months and another inch or so, she should be fine - so we'll definitely be hanging onto the loaner anyways! We had an appointment this morning with a guy from a medical supply company who showed us several great options for supine standers. Next step is an appointment with someone who can actually show us one of these specific models and make sure it would work for Meredith. Our PT is so optimistic about getting Meredith in the standing position saying it is beneficial for a variety of developmental reasons: improved sociability, muscle tone, bone density, joint developments, deepening hip sockets, and even helping with digestion. All good stuff! Meredith had a really sleepy day today, which was fine since she had a couple MAJORLY choppy sleeps the last 2 nights. Little munchkin took a short snooze from 9am-4pm. What?! When I picked her up from daycare tonight, they said she just woke up. Little Rip Van Winkle slept right through the nicest day of the year - it was 86° today!

Crazy hair after EEG Removal

Seizure

I can't say this weekend has been our best, but some good has definitely come out of the very stressful couple of days we've had. Thursday night we had quite a scare when I went in to check Meredith. Around midnight, I heard her crying so I went in and picked her up for a hug. Shortly after, she started twitching. It started on the right side of her body and then spread to the left. It got more severe as it continued. She was breathing and semi-alert. In the car on the way to the ER, Meredith stopped seizing - it lasted 10 minutes start to finish. When we got to the ER, they drew some blood, put in an IV and catheter (poor thing did NOT like that part). Urine and blood tests were normal. Shortly after we got to the ER, Meredith started vomiting and losing some color. This is when they decided we really needed to be at Children's for more intensive monitoring. So off we went, Meredith and I in the ambulance and Greg following closely behind to Children's Hospital. Meredith was seizing again when we arrived at around 2am. The staff was able to witness this one and gave her Ativan to stop the seizure. She was stable for a few hours and it appeared that she was taking a turn for the better. Unfortunately, she was not as stable as she appeared and over the next couple hours, she had 4 instances where she was unable to breathe on her own. The staff needed to use the "bag" to get her breathing again. It's a little mask and a balloon-like bag they use to puff air into her lungs. I can easily say, we have never been so scared in all our lives. We stood there feeling helpless and watched the doctors and nurses try to get our baby breathing again and each time, they did. We were informed later that the drug Ativan can cause respitory difficulties in some children. We met with several doctors and a neurologist. They thought we should get her hooked up to an EEG immediately to try to capture a seizure on the machine. If they could capture just one, it would provide valuable information on what exactly is going on and how to go about treating it. While waiting for the EEG people to get to our room, which felt like an eternity, they also did an EKG and chest X-Ray. They did finally get there around 9am and after the 40 minute process of attaching all the leads for the EEG, we were ready to roll. Soon after being hooked up, Meredith actually did start to round the corner and become more alert. We were thrilled that she was feeling better, but nervous that we were losing our window of opportunity to catch one of these seizures on the EEG. We were instructed to push a red button if we saw any unusual or seizure-like activity. Throughout the 30 hour EEG monitoring, we only pushed the button one time - it was at the very beginning, Meredith was staring off a little funny. We pushed the button, not feeling too hopeful that we actually "caught" something. During the next several hours, Meredith seemed to recover rapidly and a visit from Grandma and Buddah around 2:30 had her smiling and talking and seemed to cheer her up quite a bit. The day was long, but visits from family helped the hours tick by. By the time Grandma and Grandpa Donovan got there at 5ish, she was all smiles and laughs. And both Greg and I got to sneak outside and enjoy some of the fresh air - it was probably the most beautiful day we've had this year! She stayed connected to the EEG all day and overnight. At around 2pm on Saturday, the neuro's came in with some preliminary results and to our good fortune, the one time we pushed that button WAS a seizure. We learned that it was a focal seizure that lasted 90 seconds. Meredith was prescribed an anti-seizure medication, Trileptal, which is designed to work well with this type of seizure and is very well-tolerated. We got to come home Saturday night and we spent Sunday enjoying just being with Meredith on such a warm, beautiful day. We went for a walk, went to the park, played on the swings and soaked in some sun. We actually feel a great sense of relief that we have some information on these seizures and something to treat. And best of all, Meredith was a trooper, has come through it with amazing strength and is home with us and HAPPY! Meredith has been smiley and extremely vocal! She has quite a story to tell I guess : )