Meet the McNeil Family

Meet the McNeil Family

Monday, January 26, 2009

Bitter Sweet

We just returned home from a very emotional trip to UNC to see a developmental pediatrician who is extremely knowledgeable on MPS III.  Matt and I knew it was going to be an emotional trip to NC.  We drove by the hotel we stayed at when we were at Duke for the transplant consultation and so many memories came back.  It is difficult to even express the stressful week we had and the agonizing decision we were forced to make.  For those of you following the blog, I am sure you remember this time.

Today we spent 5 hours meeting with our doctor and her team.  They conducted a full developmental evaluation and determined a developmental age in various categories.  We knew that Waverly has lost skills since our last visit, so we were prepared for lower numbers.  Still, knowing that she is between 6 - 14 months across the board is painful.  It is so helpful to provide them to her therapists, teachers, babysitters, etc.  It allows people to adjust their expectations.  Oliver is continuing to learn and his developmental age is increasing.  He is still behind his peers, coming in somewhere around 18-20 months.  Again, this is so helpful for us.

The doctor had some wonderful suggestions for us in terms of things to watch for and tests that need to be done.  She is also going to help us create ideas and goals for IEPs and school placements that need to be done this spring.  I am SO thankful for her input in this area.

She was able to give us an idea of what the next year will look like for us.  (This is always the most difficult part of the appointment.)  She believes Waverly will likely have considerable difficulty with her mobility by the end of the year and will probably test around the 6-9 month level at our next appointment.  She warned us that we are going to see some noticeable changes in her ability to walk.  Oliver is going to continue to learn new skills, but in 12 months he may only move up 4-6 months developmentally.

We were talking with her about how we feel this is Oliver's last year to really learn new skills and progress.  We want to have as much intervention as possible for him.  We figure the more he learns, the longer it will take this terrible disease to take it away from him.

Tonight is a bit solemn in our apartment.  The kids are asleep.  Matt and I are taking in the news.  The sadness has set in.  Tears are flowing.  Desperate for a cure.

14 comments:

Anonymous said...

Love to you all.

Misty said...

Desparate in Alabama also. My tears are flowing with you. They are just numbers...

sarahdv17 said...

Saying a prayer for you.

Mom of 3 little princesses said...

shannon. i am so sorry. i am so glad you met this specialist, though. praying for you and matt and a cure.

Penny said...

Desperate for a cure here too! I read your post about the tooth fairy and I had to wipe tears away from face because I know all to well what you are going through and I have the same feelings. I am praying for you and your family.

angi said...

many people want that for you too...

Anonymous said...
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Anonymous said...

I have been following your journey since I found out about it from a friend. Your family holds a special place in my heart- and though I know no words can bring comfort please know there are many who are praying for Waverly and Oliver. May the God of all give you peace through the process

in a world surrounded by men said...

I feel stupid trying to type something. There are just no words for your situation.

But I know that comments on your post let you know that people are here, reading and caring about you.

So. I'm here. I'm so sorry.

Joanne said...

Hi Shannon,

I am also a Mom of a child with MPS IIIA and just wanted to reiterate that the statistics given really are, only numbers. These appointments with specialists are so vital and so helpful, and yet so often children with MPS diseases surpass the timelines we are given. My daughter is 10 and her mobility, thank goodness, is fantastic. Many other Sanfilippo Moms will tell you the same of their children, too. Try to hold on to that if you can. It would be such a "wasted" year if you brace yourself for a change that might not come till much, much later in the future. Joanne, Mom to Sasha

Priya said...

Oh Shannon! Your blog made me cry today. I really miss you all and wish there was something I could from here. My thoughts and prayers are with you all always.
With love,
Priya

Pamela @ Frugal Vet Tech said...

It's good to hear that you have such a fantastic doctor - that must make this difficult journey at least a little easier.

Know that I, along with others, are sad right along side of you. You're in my prayers

momma's heart said...

Dear Shannon,

It is so difficult to know what to say. I am so sorry you are having to bare such enormous sorrow. I am praying.

Pam

Penny said...

Shannon please, please listen to this song. http://www.youtube.com/watch?v=CxIN79n4jVo