Run Down

We spent the morning at Children's Hospital meeting with the metabolic doctor/geneticist who works with Waverly & Oliver.  She is wonderful!  She is incredibly accessible and always willing to answer a question or get us more information.  The kids are both doing well.  She was saddened by the changes to Waverly's legs and feet, but we are hopeful the orthotics will help.  She did have some disappointing news for us, she is leaving Children's and going to NIH.  There is a chance that we will still be able to see her at NIH, but we may have to transfer to a different specialist.  Sad.

Tomorrow we will be back at Children's for an ENT appointment for Oliver.  I know I mentioned a few posts ago that Oliver has severe sleep apnea.  I think we will most likely schedule a surgery to have his tonsils and adenoids taken out.  Several families has noticed much improvement after surgery.  We are hoping to see the same results.

I spent a morning this week visiting preschool options for Oliver.  Fairfax County offers so many choices for children with special needs, especially those with hearing losses.  Our therapists are actually hoping to get him into a summer school program, to prepare him for preschool and to give him the opportunity to be around his peers.  I am SO excited by that option.  Because of the regression associated with Sanfilippo, we want to to fill his little brain with as much knowledge and experience as possible.  The more he knows, the longer it will take the disease to destroy it.  That is our philosophy.

In other news, we think we have found a respite care worker to help me with the kids a few days a week.  She was with us for 2 days this week and Matt & I both really like her.  She was so hands on with the kids and it is evident that she really enjoys them.  I was able to go to the grocery store yesterday, while Oliver napped and she stayed with him.  What a treat!!  I am elated to have found someone that I trust.


Cari said…
I'm hoping the t&a will help Oliver's apnea. Poor little guy. Glad you found a set of helping hands--makes life a little more manageable!
Laura said…
We were so pleased with the result of Julie's t&a. I hope it works as well for Oliver. It was a rough recovery, though.
Anonymous said…
This entry makes me reflect on my own tendency to take things for granted. As an outsider, it seems like it would be easy for you to get bogged down in the horror of this illness, to not see anything pleasant in life anymore. But you haven't let that happen - you see the good in the doctor, in the respite worker, in the adventure of a trip to the grocery. An inspiration.

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