Swollen Shut

When I actually cry (which RARELY ever happens), I am not cute. I surpass Kim K’s crying face. I also get the dry-heaving breathing and uncontrollable shaky voice, leaving my eyes incredibly swollen. Almost swollen shut.

Since I typically only cry 3-5x a year, I haven’t experienced the puffy eyes recently (knock on wood). Today was the kind of day that I wish I was capable of sucking up my pride and allowing myself to have a good cry, just to let all of my frustrations, exhaustion, anger and pain out. I don’t know why, but I have had an issue with allowing myself to let my emotions out or to be myself, unless I am at rock-bottom. I’m not quite sure when that point will be for Derek and I, but I think we may be getting close.

I was relieved when I woke up this morning to realize that:

1. It was Friday
2. Greyson actually slept through the night (first time since Monday)
3. Roslynn slept like a 3 year-old and not a 23 year-old
4. I was relieved that today was the day we may get some answers at Kennedy Krieger
5. It was the last trip down to Baltimore until August 3rd.

Wrong

Greyson started crying en route to Baltimore, roughly around 10:25 am. Our appointment was at 11:00, so I was hopeful that once we got out of the car and allowed him to run around, he would be okay for Dr. Comi to see him.

Now, I am the crazy mom, where I carry a binder with me to all of G’s appointments, complete with tabs, images, office visits, immunizations, etc. just in case we would ever need something for a specialist. I also record G constantly on my iPhone at home so that I can catch strange/new behaviors or tics that he begins. Thank GOD I am the crazy mom, because I am overly prepared for anything…..including today’s appointment.

By 11:00, G was still crying. He was mad, tired and most likely hungry, though he was only signing for “drink”. Derek and I catch Dr. Comi with G’s newest tic, problems sleeping and lack of emotion regulation. She informed us that the vascular doctor reviewed G’s MRI from March 2018, and was not overly concerned with the white matter found in his brain, or his encephalopathy. After showing Dr. Comi the videos of G’s “tic”, she noted that he favors his left side, has extremely poor muscle tone, particularly on the right side of his body. He also goes limp on his right side when he has the tic, though Dr. Comi describes it as a stroke-like episode. Derek and I didn’t notice it at first, but after reviewing the videos again that I had taken, I immediately saw what Dr. Comi was referring to, and why she was so alarmed with Greyson’s recent behavioral issues.

Dr. Comi also informed us that Kennedy Krieger and Johns Hopkins has a new form of MRI that can take images of specific sections of the brain, almost in slices. Dr. Comi stated that although the preliminary MRI ruled-out any Sturge-Weber Syndrome, she still wanted to send him for a repeat MRI, focusing on specific parts of the brain (with the new technology) and she also wants us to have a repeat EEG. I scheduled the EEG for July 27 at 9:00 AM. Another department has to set up the MRI, since it with and without contrast AND with sedation. Queue my exhaustion and frustration.

Dr. Comi also prescribed Greyson an anti-seizure medication as an emergency medicine we will give him if he begins convulsing or goes limp on one side of his body again. The war on prescription drugs is ridiculous and I will not get into the fight for/or against meds, but $305.67 for a medicine that will potentially save our child, is unfathomable. Another reason why I wanted to cry today.

I am exhausted. I am struggling with the fact that we have little answers in regards to our son. I’m tired of him not allowing me to hold him, or cuddle him like so many mothers do to their boys. I am jealous of the parents that have typical boys that play, laugh and like trucks and firemen. Those same boys that hug and kiss their mothers goodnight. I am heartbroken. I wish I had that.

Despite my longing for a “typical” child, I try to remind myself that it could always be worse. My child could be dying from a rare form of cancer, or I could be living in a third-world country where medical services are basically non-existent. I feel guilty when I wish I had a normal life, when there are so many other that are far less fortunate than I am. I am trying to stay strong for my family and keep pushing on, but it becomes very difficult when dealing with a non-verbal child that screams/cries and tantrums from morning to night because he can’t communicate with us to tell us what he needs or wants.

We will continue to press on and support Greyson the best that we are able to, for as long as we have to. We will get up at 4 AM as often as we have to, just to get him down to Baltimore for tests and appointments. We will continue to support the staff that works with Greyson on a daily basis, and continue to support Roslynn our daughter, who is old enough now to understand that her brother is “different”. I pray that we find some relief and wholeness during the next few months, as we embark on our one-year anniversary of seeking a diagnosis for our baby boy.