Wesley's MPS Warriors: The First of Many...

This past Friday was our first of many MPS Awareness days. It was an emotional day for me.
As Wesley's mom, I was stuck between being overjoyed with how much support we were getting all day and being sad, wishing I didn't need to know anything about MPS. Let alone have a child with MPS2. I am still processing and working on accepting our "new normal." I first want to thank each person who took the time to wear a purple shirt (or rocked their purple hair) in Wesley's honor.
I could hug each and every one of you! My best friend and her Mom even made t-shirts for themselves for this very special day.

On Wednesday while we were down for his care plan meeting at the Children's Hospital, Wesley had an echo-gram (ultrasound) of his heart done. That next day I got a call from Sheila, the nurse for all the MPS patients at the Children's Hospital and who I will talk to the most about treatments and baseline appointments every year. She said that the cardiologist requested to see him this coming Thursday the 21st because his Mitral valve and his Aortic valve have thickened some due to storing enzymes. It is not affecting his heart function at this time, but the cardiologist would like to meet with us and check on Wesley himself to get a better idea of how well his heart is functioning right now. This will provide the baseline results in order to measure for strain or decreased function in the years to come. We will also be meeting with the general surgeon the same day, to set the surgery date for Wesley's port placement so treatments can begin. Their goal is to start in the middle of June.
It is so close, but yet so far away.

I am excited because other Mothers of children with Hunter Syndrome say that the enzyme has helped their children so much. One said that the week after her sons second treatment he was a completely different child in terms of physical ability and endurance. I am also a little sad because from now on, once a week Wesley will get stuck with a needle and have to sit in a chair for 5 hours to get treatment. The hospital feels like it is becoming our second home and I honestly hate it.

At the care plan meeting they told me that it will become normal and we will get to know all the other children and Mother's who go for varying treatments the same day as us. My heart just breaks, for ourselves and also for them. When I was pregnant, weekly hospital visits of treatments to help prolong my child's life were never a consideration. It was just not part of my thinking when I would imagine what Wesley's childhood years would be like. I don't think anyone imagines being dealt those cards.

On a happier note, lets see those pictures I promised of our first of many International MPS Awareness Day! These amazing human beings, adorned in purple for Wesley's honor made me tear up a time or two as I was looking through the hash tags. I love and thank you all!