Wednesday, June 13, 2012
I am so proud of Oliver. This afternoon he graduated from preschool. The staff put together an amazing ceremony for all of the kids, with hats and diplomas of course. They called each of the kids' names and they walked over to the principal to receive their certificate. Adorable!!! Matt wasn't able to be there so he Skyped in to watch the event live. Here are a few photos of the big day, including a very smily Waverly who was so happy for her little brother.
Monday, June 11, 2012
One of the difficult issues that comes up in raising a child with a rare disease is how to relate with other families who have a child with the same rare disease. There is an online forum that I joined immediately upon diagnosis. And as I found my way around facebook, I connected with other families and joined support groups. One thing I have learned after 4 years in the Sanfilippo world, is that simply sharing a common diagnosis does not a friend make. We may be able to talk shop regarding the disease, but each family chooses their own path of dealing with it. Some families retreat, others immerse themselves, some choose to seek alternative treatments and therapies, while others decide to take a natural approach and treat symptoms as they arise. I have found those few families who I connect with on a level other than simply Sanfilippo. They are my go-to friends when I need advice or simply need to vent. Without their friendship, I would be lost. I recently realized just how horrible it will be when the children of these dear friends pass away. (Morbid thought, I know.) I am beginning to not only worry about my own children, but also these beautiful children who have become so important to our family. Obviously, I am feeling incredible sadness and as I have wallowed in Waverly & Oliver's future, I was reminded that I have dear friends who are also going to lose their children much too soon. I sometimes forget that our reality is incredibly abnormal and atypical.
Sunday, June 10, 2012
Waverly participated in field day Friday at her school. Dressed in her green tee, she joined her second grade friends for a day of games outside. As you can see from her smile, she had a wonderful time. A huge thank you to her aide for providing her with the assistance to participate in such a fun day. You are wonderful, Chao-An!!!
We went to a local working farm on Friday morning. It was a beautiful day and I thought Oliver would enjoy a little field trip. He was uninterested in the animals, however he loved kicking his feet in the gravel paths. It made him very happy. He was able to climb on some tractors and ride a carousel. We never pass up an opportunity to ride. We ended our fun Friday with a trip to our new favorite yogurt shop, Sweet Frog. As you can tell from the photo, Oliver loved his cake batter yogurt with M&Ms.
Thursday, June 7, 2012
We took the kids to see the Nationals play on Sunday afternoon. It was a beautiful day for a baseball game. The kids got free jerseys and both home runs were hit into our section. After the game, kids can run the bases. Matt took Oliver down and a helper ran with Oliver. He really loved it. We had such a wonderful day!!!
Tuesday, June 5, 2012
It certainly has been awhile. I have had so much to say, but little energy to write. I will begin with some updates: School - We had some bumps in the road, however we have decided to keep Waverly & Oliver at their current school next year. It will require me to transport to/from school, but it will be well worth it to keep them in a familiar environment with staff who know them. As we looked at our options, we realized that consistency is the most important factor. Thankfully, we had the support of the teachers and administration to make this happen. I am beyond thrilled. Waverly - We are *finally* getting Waverly's brain and hip MRI completed on Friday. Our neurologist wanted an MRI completed, given that she was having bouts of constant crying and behavior changes. And Waverly's most recent hip x-ray showed some issues and the orthopedist wants to take a closer look. We also had a 24 hour EEG completed last week. We were able to go into the clinic, get all of the electrodes attached (not an easy task!) and go home for 24 hours. Waverly did a great job and I hope that the neurologist gets some useful information. Thankfully, Wavey's crying spells have all but disappeared. She is returning to her happy, bubbly self. Oliver - He is such a good little boy. I cannot believe he is going to be graduating from preschool next week! He is growing tall and continuing to do such a great job. We are seeing changes in him - Sanfilippo revealing itself as he gets older. His asthma and allergies are almost entirely under control. We have been working with an amazing allergist at CMNC. She changed up his medications and the new meds are working wonderfully. The only blip was a weekend trip to Ohio when I forgot to bring his inhaler and nebulizer. I have been sad recently. Most likely the reason I have been avoiding the blog. Waverly turned 8.5 a few weeks ago. It has hit me hard. As each birthday passes, I feel like some awful countdown clock is ticking more quickly. I knew that the 10th birthday is going to be traumatic, but I am surprised by how much even a half birthday has hit me. And Oliver's preschool gratuation next week is going to be so very emotional for me. I simply want to freeze time.