It's Been Awhile

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.


Joanne Huff said…
Hi Shannon, the words from this entry hit home for me today. I too have said all the things you wrote, wanting to freeze time, how much harder birthdays have gotten. As Sasha approaches her July birthday, I feel like I'm nearing an imaginary (or not so imaginary) finish line. I just don't know the end date. The last part is what used to keep me upbeat, not knowing the timeline. I would tell myself Sasha could live to be 25, 30, 4o even. But recently, that optimism has changed, and I feel like as we approach 14, it simply means we are approaching that unknown end date. It's just an awful, awful realization. Thinking of you a lot as you experience such similar emotions. Lots of hugs to Waverly and Oliver. xoxo, Joanne
Lisa Arlt Escoto said…
Shannon, you are an amazing mother. The way you pack so much into your life with your children inspires me. Thank you so much for sharing your journey. Lisa

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