Over due.

This up date has been far away from the last one and for that I apologize. We went on vacation to see my Grandmother, she lives in the east coast near the beach and it's absolutely beautiful where she lives. She lives in a nice subdivision with awesome walking trails and nice people. I can't even begin to tell you how much Wesley loved it there, 5 whole days there. Sleeping in, naps, riding his tricycle, the beach. He rode his bike about a mile a day between the paved trail and the sidewalks! He would laugh and yell woo hop the entire way. He was filled with so much joy. The best part about this vacation was that we got to go a week without therapy, nurses, Drs, and needle sticks. 9 days he got to be a normal little boy. He was so happy there I wish it was possible for us to move. If only it were that simple. 

When we got back it was a rough adjustment. I didn't realize how busy we were until we had our first entire week home. Last November it started with one therapy day, then in December we added another day. Come January we added a third therapy on the second day. Then his Dr appointments started picking up like crazy. Then we finally had a diagnoses and it was hospital palooza complete with a two day hospital stay and surgery at the end. Then they added infusion days. We are gone out of house for Wesley's needs 4 days out of the week on a good week. And it's an even better week when we don't have to drive to the children's hospital. 

After an awesome vacation when we got home I got to experience the feelings all over again. It's heart breaking watching Wesley go through what he does every week. It's taken me so long to write this is because I have been hiding, basically. Maybe if I can just avoid it for a little longer it won't be true. Denial, it could be called. It's hard on my momma heart. Accepting. Coping. Stretching myself so thin so he has a better chance of having the best life he possibly can. 

The medical part of this update is that Wesley was diagnosed with hydrocephalus. It's excess water on the brain. His neuoroogist failed to mention that to me when we were there 6 months ago and this time he was like "oh, I didn't tell you?" 

I have been working on getting a lumbar puncture to check the pressure of the fluid in his brain since before I figured out the Dr had withheld information from us because Wesley has headaches and I have assumed that they were from pressure. 

I am very fed up with dealing with Drs who know nothing about MPS! 

Wesley is doing amazing with infusions. He can put his socks and shoes on by himself. He is starting to walk and run quicker and he is exploding with words. His newest are "donkey" and "it's cute" 

He fills my heart up with so much joy! I love watching him learn :) 

Thank you guys for praying, supporting, and encouraging us! 

Have a warriors heart, 

Wesley's Mom 💜