Psalm 86:16-17, “Turn to me and have mercy on me;
grant your strength to your servant and save the son of your maidservant.
Give me a sign of your goodness, that my enemies may see it and be put to shame,
for you, O LORD, have helped me and comforted me.”
We recently received a call from Edmond's geneticist stating that the lab in Chicago that was testing Edmond's blood work called and said they definitively identified the type of lissencephaly that Edmond has. He falls under the umbrella of Classic LIS1, Type 1 isolated lissencephaly. They stated it was so clearly this type that they did not need to run any further testing. This means that his condition was caused by what they call a spontaneous occurrence where somewhere along the line, in his formation, a chromosome was passed over or deleted which later manifested as lissencephaly or "smooth brain." This appears to be the most common form of lissencephaly.
It is good news in our family for a few reasons.
1) It confirms that this was completely a genetic/chromosomal occurrence and puts my mind at ease that there was nothing that I did during my pregnancy that contributed to brain defects and there was nothing we could have done to prevent it.
2) His particular type of lissencephaly is not hereditary, neither Adonis or I carried it down to him in our genetics, and therefore none of our offspring are carriers of it, therefore Eden will not have to undergo testing to determine if she is a carrier, and we will not have to worry about her offspring having it.
3) Because it was a spontaneous occurrence of an "error" during his morphogenesis or fetal development, the likelihood of having more children with this or similar conditions is extremely rare, 1% chance or less.
Edmond has been struggling this week with a cough that turned into bronchialitis. The pediatrician has put him on antibiotics and albuterol for his weezing (although the weezing is not too severe). In total he is taking 4 medications twice daily, plus tylenol. He already has a difficulty with keeping formula down and not throwing up during medication time, so it has been especially hard to get 5 nasty tasting medicines down him, keep it down, and get him to drink his bottle. He's been having a hard time feeding while having this cold. We've been covered with throw up all week, blankets, towels, shirts, please keep us in prayer, medication time is difficult. Eden has recently been throwing tantrums about sleeping in her bed at night and since Edmond is already up all night coughing, we haven't had much sleep in a week or so. Edmond has also been screaming crying every night for an hour or two between the hours of 10pm and 1am and we are unable to console him no matter what we try. We are hoping this is just a phase and passes soon. I literally have to put in ear plugs while trying to calm him down, and his screaming is still super loud. The amazing news is that Eden sleeps through this screaming even though we are in a small apartment with thin walls, so that has been a blessing. We bought Edmond a highchair that helps him to hold his head up for eating and also supports him sitting upright (picture above). We were really blessed to find it at Babies R Us at a super low discounted price because it had already been opened.
In other news, I realized that I had been operating in a state of shock over Edmond's diagnosis for the past 6 months. I didn't know I was still in shock all this time, until I wasn't in shock, if that makes any sense at all. I think hearing the news about his bloodwork the other day helped me to come to certain terms that this has happened to our family, and to Edmond, still believing God for this process and for miracles, but also able to accept what has happened. I'm glad I was able to take this step, it alleviated a great deal of anxiety and questions that wouldn't end in my mind.