I had such a wonderful weekend with my friends, Michele and Kamarah.  It was so nice to be together again.  (The last time was Michele's wedding over 2 years ago.)  Plus this was the first time they met Oliver and saw all of us after the kids' diagnosis.  I have shared with them so much of my life, the ins & outs of taking care of the kids, my fears, my sadness, my failures...but having them here with me in the daily routine was so valuable.  They were able to see first hand all that goes into taking care of the kids.  The incredible patience Matt and I have to use when dealing with Waverly & Oliver.  The craziness of doctor appointments (they went with me to the ENT with both kids).  The anger of Sanfilippo's effect on my family.  The times when I just want to cry or scream or both.  We shed a lot of tears together during their visit.  They fell in love with Waverly and Oliver.  They also know that their next visit is going to be drastically different.  The changes that will take place in both kids is so upsetting.  We watched videos of Waverly from the past few years and they understand when Matt & I say we are losing her.

We also laughed A LOT.  They are friends that you can just jump right back in and pick up where you left off.  We stayed up way too late each night and simply enjoyed our time together.  I can't wait to see them again.

In other news, we did find out that Oliver is going to get tubes in his ears next month.  He has had a lot of ear infections, with more to come this winter.  Because of his hearing loss and MPS III, the ENT thought it best to get the tubes in.  Matt and I think this is the best decision, too.  Ear infections are NOT fun.

We also completed step #2 in getting a waiver to help us with medical costs and therapy for the kids.  We still have a few more months wait, but it is going to be worth the wait.

Tonight 2 volunteers from "Make-a-Wish" are coming over.  We are going to wish for a trip to Disney World for Waverly.  We still have to look at a calendar and figure out when we want to go.  I am thinking maybe next spring or fall....just not the hot summer.  She is going to love it.


MoziEsmé said…
Glad you had a good time! That Disney trip sounds like it would be wonderful...
Frugal Vet Tech said…
Yay for fantastic friends! When I was young, we went to Disney World in October. It was great - most everyone was in school so it wasn't crowded and the lines for everything were very short or non-existent. I would definitely recommend going when school is in session.
dawn said…
Magic Kingdom does an opening show every morning, and they bring a family in with all the characters on the train to help open the park. You may want to add that to your wish...
Nicki said…
Hi Shannon,

I have come across your blog site via my google alerts for san filippo. We live on the south coast in the UK and two of our beautiful children were diagnosed with san filippo in August '06. Tom is now 3 1/2 and Sophie is 5 1/2 .
It is emotional to read your thoughts because so many of them echo mine! Gosh this is a roller coaster of an experience isn't it.

I would welcome the chance to email you more.

Best wishes
Jenkins said…
Hooray for the waiver! We just got ours and it is life changing. It is unbelieveably helpful with copays and we are now able to order some medical equipment to help around our house (bath chair and special seating).

I wanted to pass along an amazing program that VA offers (about 6-7 states are the only ones that offer it) called HIPP. This program helps pay for your insurance premimum payment. You have to check it out. We just applied.

Happy to hear you had a wondeful visit!
Courtney said…
We went to Disney World last March and the weather was perfect. It was mid 70's and not really rainy like it gets sometimes in FL. The kids were able to wear shorts and t-shirts the whole time and really enjoyed it.
Shannon said…
Nikki, I would love to get in touch with you. Send me your e-mail via a comment and we can start a conversation.

karen510 said…
Oh Ear Tubes Shannon! Did Oliver get them? I remember when Graham (do you remember our Graham?) had ear infections so often. Little trooper he was, I could only tell by the fact that he was actually a little fussy on those days. We ended up with ear tubes also. Fantastic decision it was for him. AND they lasted a good six months for one and a year EXTRA for the other than the doctors had ever hoped for them. Hope your experience is good with them.

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