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 : )

Meredith vs angel food cake

Meredith is trying SO hard, and with lots and lots of practice, is slowly learning to self feed. The first couple seconds of this video are where she really shines, haha!

54 Degrees today - yahoo! Played outside at the park

Getting casts made of my feet for AFO's

Getting Fitted for our Stander!

Yesterday morning Greg and I brought Meredith to Children's Hospital to get her fitted for her stander. They drew an outline of her little body on brown paper and then took lots of measurements. Meredith was happy and patient throughout the appointment, which was great because she hadn't been feeling well the last few days thanks to another ear infection - her 5th of the season, ugh. The options they showed us for standers were much simpler models than the one's our PT had shown us. They were compact and transportable, which we liked, but we need to make sure the PT thinks these will be ok for Meredith since they are slightly different. The office agreed to call and talk with Arlene, the PT, to make sure these models will work. But we have the ball rolling! They also took casts of her tiny feet to make the orthotics she will wear while in the stander. We got to pick the pattern we wanted for the AFO's which was actually the hardest part, but after going back and forth for way too long between leopard print and sky, we finally settled on a light blue sky design : ) They said it would be about a month until the stander is ready for us. I cannot wait to see this little girl standing, it's going to be amazing.
After Children's, we were off to the pediatrician's office to check in on why her ear infection wasn't getting any better. The doctor confirmed that the antibiotic she had been on just wasn't working. They gave her a shot in the leg and already, she's well on her way to recovery. She was much, much happier today and back to her usual smiley self. It was so warm out, we went for a nice walk and played for a while on the swings at the park. So nice to see her happy again!