A Few More Vents....

The first of our three EEGs was only about an hour and Melia screamed the whole time they were putting the probes on her head. It took both cam and I to hold her down. that was hard, because now both of us had to see her pleading, fearful face wondering why we were doing this to her. Then cam held her as she fell asleep in his arms since we had to keep her up until 10 pm the night before and wake her up at 4 am so that she would be sleep deprived for the test. I hope we get some results that will explain something... anything.

a few weeks later i went into labour and many, many hours later little Owen made his appearance. Ten fingers, ten toes, my perfect little boy and part of me aches thinking what if... Melia was just as perfect. What if... I have to stop thinking this way, but it always creeps into my mind that this could happen to him too. if it does, I'm definitely done having children. Late at night while I am feeding him, I cry some more. I’m tired and scared and just keep praying that he will be healthy and maybe, just maybe he can teach Melia to talk while he learns. Wishful thinking I guess.

Melia loves her little brother. maybe too much! she cant stop kissing and hugging him and has completely forgotten about her baby doll that used to go everywhere with her. who needs a doll when you've got a real baby, right. I'm a little afraid that she is going to love him to death one day and so i really can’t leave her alone with him.


We bought Melia a trampoline. it’s a small 5’ around one that is up in her bedroom. Saying she loves to jump would be an understatement. we’ve already had her jump through one crib mattress, literally. springs poking out and broken off. One day she woke up at 5 or 6 am, and jumped until 7 when i got her out and took her downstairs for breakfast. after she was dressed she climbed back up to her room and screamed and cried at the side of her crib until i came up and put her in so she could jump. i came up a few times to bring her down but she wanted to stay and jump. i brought her down for lunch and right after she was headed back up. she jumped again until she fell asleep for her nap then woke up and kept jumping. i got her downstairs for dinner and yet again, right after she wanted to be back in her bed and jumped until about 10 pm that night. She literally jumped for about 12 hours that day. i cant help but think she is going to have amazing legs!!
the trampoline is in my living room now. she loves it. i love it. and owen loves to watch her jump.


we got called into the neurology department to discuss the results from Melia’s EEG. turns out that she has seizure activity in her brain. So...? does that mean she is having seizures or what? My pediatrician said it meant yes, but the neurologist says its the potential for seizures... whatever that means! but they also said they need more testing so we will have to come in for a day long EEG. Great, so with my little newborn I need to spend a minimum of six hours in a little room with Melia hooked up to a machine so she cant move very far and take care of Owen? thank goodness for my grandma who took owen for me so i could focus on Melia and thank goodness i had pumped and had a store of milk in the freezer for him.
so from that test we figured out that what i thought were seizures, staring and unresponsive for about 30 seconds, were in fact not seizures? so when were the seizures happening? I'm so frustrated. and again, no answers.


They are looking into the possibility of Rett syndrome. Not cool. After googling it i got sad again. I don’t like the looks of this disease, yet it seems like it is the best candidate for all her symptoms. “Rett syndrome is a disorder of the nervous system that leads to developmental reversals, especially in the areas of expressive language and hand use.” It is usually only found in girls and can be misdiagnosed as autism or cerebral palsy. That lessened my fears slightly until I read that in very rare cases it has affected boys who either die in utero, as an infant or at the very latest before they are two years old. Please be healthy Owen!
The more i go back and read about Retts the sadder I usually get. Some of her symptoms obviously started around 18 months but some of them are still showing up as she gets older. I really hope she doesn’t lose the use of her hands and legs. My little girl loves to jump and swim and as long as she can do that I know the quality of her life will be good but if she looses that, I don’t know how she will feel already trapped in her head and then her body? It makes me feel helpless and I usually have to stop googling or even thinking about it for a long while so I don’t become over burdened with sadness. I’ve also read that a good number of little girls affected with Rett syndrome will just suddenly die due to seizures, or gastric perforation, heart problems or a few other things. Oh great, another thing to worry about on those rare days that melia sleeps in my brain automatically jumps to- She could be dead in there. I need to stop googling!


new baby. no sleep. no answers. running from appointment to appointment. Turns out I'm in the 80%.