I had such a wonderful weekend with my friends, Michele and Kamarah. It was so nice to be together again. (The last time was Michele's wedding over 2 years ago.) Plus this was the first time they met Oliver and saw all of us after the kids' diagnosis. I have shared with them so much of my life, the ins & outs of taking care of the kids, my fears, my sadness, my failures...but having them here with me in the daily routine was so valuable. They were able to see first hand all that goes into taking care of the kids. The incredible patience Matt and I have to use when dealing with Waverly & Oliver. The craziness of doctor appointments (they went with me to the ENT with both kids). The anger of Sanfilippo's effect on my family. The times when I just want to cry or scream or both. We shed a lot of tears together during their visit. They fell in love with Waverly and Oliver. They also know that their next visit is going to be drastically different. The changes that will take place in both kids is so upsetting. We watched videos of Waverly from the past few years and they understand when Matt & I say we are losing her.
We also laughed A LOT. They are friends that you can just jump right back in and pick up where you left off. We stayed up way too late each night and simply enjoyed our time together. I can't wait to see them again.
In other news, we did find out that Oliver is going to get tubes in his ears next month. He has had a lot of ear infections, with more to come this winter. Because of his hearing loss and MPS III, the ENT thought it best to get the tubes in. Matt and I think this is the best decision, too. Ear infections are NOT fun.
We also completed step #2 in getting a waiver to help us with medical costs and therapy for the kids. We still have a few more months wait, but it is going to be worth the wait.
Tonight 2 volunteers from "Make-a-Wish" are coming over. We are going to wish for a trip to Disney World for Waverly. We still have to look at a calendar and figure out when we want to go. I am thinking maybe next spring or fall....just not the hot summer. She is going to love it.