Ally's Dandy (Walker) Life: June 13th, 2014- The Last Time

As usual, this post is a bit late, but real as always.

Ally's shunt surgery was scheduled for this past Wednesday. However, the week before we got a call from the neurosurgeon's office that our neurosurgeon would be out of town on the 11th and they had rescheduled it for the next Wednesday, the 18th. As a result of this, she will not be the first surgery of the day, but the second. I was kind of bummed about that, because again she will not be able to eat for so many hours before the surgery. As a result it is better if the surgery is earlier because Ally is sleeping really well at night, so she can sleep through most of her fast.

Part of me was unhappy about moving the surgery because I want to get it over with, but the other part of me was glad because I feel like we get a little more time with our unshunted girl. This week I keep thinking things like, "This is the last Friday she will have without a shunt." "This is our last church visit without a shunt."

I know so many people would say, "Oh, a shunt is no big deal." I know it's routine. I know many people have them. I know that people with them live very normal lives. I know Ally needs it to live, and to help with her development.

That doesn't mean it's easy.

They're going into my baby's head. That's scary- no matter how 'routine'. She will be scarred forever- and as a baby, it will be VERY noticeable. Not that I think we will treat her any differently (except we will be watching her for signs of shunt failure or infection), but others might. And while I'm all for raising awareness of Dandy-Walker and hydrocephalus, I don't want to have to spend all my time explaining to others why there is a huge scar in my baby's head.

I also wonder how she will handle it. Lately she's been so smiley and happy. Will she recover quickly and be smiley and happy again? Will she have lots of soreness and discomfort? How will she be a year from now? Five years from now? How will we break it to her every time she has to have another surgery? Will she be scared? I think Ally has a lot of strength in her, but in light of all of these questions is it any wonder I am savoring every 'last time'?

I know that everything will be okay. I know because we have met children with shunts. One of our new friends updated on facebook, saying that her neurosurgeon said her son was 'just a normal little boy with a piece of plastic in him'. I know because we have a great neurosurgeon with lots of experience. And I know because we have a great God who has watched over us through all of this and will not leave us now.

Now for the EXCITING news. I am currently working on getting together a list of reference families across the U.S. These families will volunteer basic information to be posted on the Dandy-Walker Alliance website. Then when families are newly diagnosed and *hopefully* find or are directed to the Alliance website, they will find at least one family nearby who is ready, willing, and able to talk with them about Dandy-Walker and their experiences, as well as help them with things such as Early Intervention, doctor referrals, etc. specifically for their state or area. It will also have a list of blogs like this one so that as these families start 'googling' they will find real stories of what it's like to have a child with Dandy-Walker- and the hope and joy we have too. I have had responses from about 35 states, and 2 from Canada and the UK! I am really excited about what this could mean for DW families- so many families who have responded said they think it is a GREAT idea and may save many lives.

Step 2 is to get the medical community involved. Once the reference family list is complete and up and running, I plan to send a letter with the brochure the Alliance has created and the state's reference family information to the many doctors that these families have said they would recommend to others. The day of the last post I had left the college where I am an adjunct this summer and right next door is the Maternal Fetal Medicine office we used to frequent. Who was walking to her car- but our doctor! I know that was a divine appointment! We hadn't seen her in a while so I caught her up on Ally and everything that had happened since her early arrival. I also told her about the Alliance and the idea of getting reference families and hopefully getting the medical community involved. She said that the problem was that doctors often feel uncomfortable telling patients "we don't know what you should expect" as Dandy-Walker is such a wide-spectrum disorder. On the flip side, often parents press doctors so much for information that they feel compelled to tell them something. I'm so glad that our doctor was bold enough to tell us 'we don't know- but this is what we think, and this is how we can start to rule out possibilities.' I think she will be a real benefit to our cause of informing the medical community- she's never afraid to tell it like it is! I took Ally to visit with her and our point nurse today. They all just swooned over her (and pointed out how good it was to see her in person instead of in a shadowy sonogram photo!). And while there we gave them a few Alliance wristbands too!

Russell has also been given the go-ahead by the Alliance to hold a softball tournament, with the proceeds benefiting the Alliance. He is very excited about it and we will let you know more as plans progress. He does need some business sponsors so if you or someone you know might be interested please let us know!

Please pray for us Wednesday morning. We will update when it's all over. She will stay overnight at least one night and then we will hopefully be home if all goes well.