Quick Update

First of all, THANK YOU THANK YOU THANK YOU!!! to everyone who bought from our Pampered Chef fundraiser and donated via PayPal. Together we raised $3,227!!!! We have been surprised by how expensive therapies and medical costs can be but are completely blown away by the amount of support we received from you all. We are completely humbled and absolutely blessed that you all love our little boy so much.

 

The next two weeks are Spring Break from Anchor Center. As both a student and a teacher I looked forward to breaks like a little kid looks forward to Christmas. Well as a parent I am sad to have spring break. Not that I mind spending time at home with Wesley, but I miss the things I learn while we're at Anchor and seeing my mommy friends there.

In place of our normal Anchor Center time this week we have two important appointments. Yesterday we went back to the neurosurgeon to evaluate Wesley's head growth, shape, and development. They agreed that the helmet has definitely helped shape the back of his head although his forehead is still significantly misshapen. Because of his other issues, they still don't recommend the Cranial Vault Reconstruction surgery (which entails removing parts of his skull, reshaping them, and putting them back with gaps to allow for growth). Since his eye sockets are well formed and are not affected by his forehead shape, and his brain has room to grow in other parts of his skull, they don't think the risks of such an intense surgery justify any possible improvements. Instead, they recommend a simpler surgery in about a year where they fix the shape of his forehead with a much less invasive method. We're on board with this, grateful that they can fix it, and glad we don't have to put him through surgery right now. It's a little nerve racking to have a surgery looming in his future, but it is for the best in the long run.

Tomorrow we go back to the orthotist to evaluate his helmet and the progress we've made so far. They are going to do another laser scan of his head to compare the shape from October to January to now. We'll decide at that point if the helmet will continue to help, or if it's served its purpose and we're done. At our last appointment in February they were impressed with the improvement he's had so far. It was so nice to hear we made the right choice after we agonized over whether helmeting him was the worth it in the beginning. Now that we've seen significant improvement, I have my hopes up that we will at least get to switch to only wearing the helmet at night. I miss seeing and holding and kissing my boy's sweet head but at the same time we want to get all the benefit out of it as possible. His head is not perfect but it's to the point that a little hair covers the lumpiness where before it was very obvious (to me at least) that his head was very flat on the left.

So, we got pretty good news yesterday and we're hoping for good news tomorrow as well.

Wes wouldn't nap yesterday but during his one hour helmet break (he wears it 23 hours a day) I set him down for a minute and he scooted himself down and fell soundly asleep. I can't get over how adorable he is.