Monday, September 15, 2014
Oliver has been doing so well the past few weeks. He is in second grade and seems excited about going to school each day. He is walking independently, eating well, and giving better eye contact. I am so proud of him and thankful that he can still walk next to me while I push Waverly's wheelchair. He is my hand holder and will almost always wait for me with his little hand extended waiting for me to grab hold. His strong little frame and obedient spirit provides us the freedom to be out and about with Waverly. Once his walking declines, our ability to move around easily will be diminished - there are no double wheelchairs. So lately I have been cherishing the moments. Holding hands, pushing a wheelchair and putting one foot in front of the other. Together.
Wednesday, September 3, 2014
Yesterday was the first day of school and we tried to take the obligatory picture without much success. Oliver just wanted to walk in the yard. Waverly was sleepy and would not give me a smile. This picture actually makes me quite sad. I looked back over the past few years and they have changed so much - especially Waverly. Hoping she can get her spark back soon and we can have a redo with smiles and open eyes.
Monday, September 1, 2014
We weren't sure if we could go on summer vacation this year because of Waverly being unwell. After much consideration, we decided to just go for it. We didn't want to regret making memories with the kids.
We were very fortunate to get in to see her neurologist a few days before we were scheduled to leave. It was a miracle of timing with someone canceling the moment before I called to try to get in. He listened to my concerns and was willing to try my idea (based on the advice from other parents who have kids with Sanfilippo).
We held off beginning the new medication, hoping we could start it upon our return. Unfortunately about halfway through vacation, her symptoms worsened. She was so upset - crying and banging her head on her wheelchair. We decided to give it a go and give her the new medication. It took about 2 days before we saw an improvement, however she was much happier for the last few days of our trip. I wouldn't say the new medication is a miracle drug yet, but it has potential to keep her comfortable and happy. We even got a few smiles and giggles.
Hoping we have brought her some relief.
We loaded up the minivan last week for an end of summer road trip. We love hitting the open road. And given all of the supplies the kids need when we travel, a van is required. We opted for another Canada holiday and once again The Great White North did not disappoint. Here are a few favorite photos:
A Canadian delicacy - I recommend the maple
Oliver romping around at the farm
Enjoying the most beautiful porch
Obligatory family shot in front of famous building
Oliver making friends with a horse
Tractor ride with our dear friend
Breakfast in Montreal
My guys waiting for a brioche
Oliver exploring Vermont
Wavey excited to be almost home