Oliver's New Normal

I have used the phrase "new normal" so often over the past {almost} ten years. As Waverly & Oliver progressed and then regressed because of Sanfilippo Syndrome, we would have an adjustment period and then adapt to changes. Then it referred to grief and our lives mourning Wavey. We find ourselves once again free falling, but we *think* *hope* *pray* Ollie has settled.

The winter months have always been more difficult than other times of the year. Respiratory illnesses, flus and stomach bugs abound; each sickness takes its toll. It is also a time to hibernate. The cold keeps us from being outdoors due to temperature regulation issues.

Oliver has struggled. We discovered further deterioration of his hips joints. He has been incredibly agitated and unhappy. Our usual remedies simply haven't been effective.We also learned he lost 7 pounds - not planned. Could the answer to his grumpiness be as simple as he has been hungry and doesn't have the language to tell us. Talk about mom failure and guilt.

We have worked with his GI team to increase his caloric intake by a significant amount. Both Matt and I believe we have seen a positive change since giving him more food each day.

Deciphering his signs has been one of the most difficult aspects of mothering. I had a fairly innate ability to read Waverly. She would trick me at times with her sassy spirit, but we could always find a cause. Until the cause was her body's sheer exhaustion. And even then I knew. Oliver has been more mysterious, in keeping with his personality.

It is my hope that we have landed and we can stay in this space for awhile.


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