It's really hard to write a blog about your child and not get emotional. I always heard that "children change everything" but had no idea how loud that would ring true in our first year of parenthood. So much has changed from how I look at the world, how I look at people and how I react to both. I've been told that I expect too much out of people but I think that life is too short to not expect the best out of the people who claim to love you. We have suffered a lot of losses as far as friends go but being the lucky girl that I am, there were plenty of amazing people who stepped up and helped me when I needed them the most and for that, I will truly be thankful.
Just eight weeks ago we went from having a son who was "behind on his milestones" to having a son that has special needs, has started Physical Therapy and Occupational therapy as it was discovered that he has Hypotonia (for which we are still trying to figure out an underlying cause) and after being referred to a Neurologist (due to an issue with his eyes) we were told that our son has a Cystic Lesion of the Pineal gland and will need to be referred to a Neurosurgeon in the near future to remove said cyst. The scary part is the fact that the cyst is right in the middle of his brain and is one of the most dangerous of all brain surgeries. After a lot of research we found a Surgeon who does this operation endoscopicly as opposed to "open" brain surgery and after a pricey consult with Dr. Shahinian of the Skull Base Institute in LA we were informed that the cyst is definitely the cause of our sons "pin-point pupils" and that he would need to have the lesion removed in the near future. However, our son is much too small for the surgery right now and the dangers of said surgery would be higher than allowing the cyst to grow. So, we are to catch back up with him in a year. A WHOLE YEAR. |
About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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