GEAUX Tigers!!!

Here is Ava in her Purple and Gold for the first time!

Zachary Secretin Update

Zachary has been on the new form of the Secretin (still the transdermal) and there seems to be some difference in his behavior. He seems more agitated when things don't go the way he wants them to go. On the positive side, he is reading more and will stay with an activity longer. An example of this was watching Wipe Out with Victor last Tuesday. He actually sat with him for the full hour and laughed at parts of it. This is a rare event for Zachary. He is typically more interested in watching something in fastforward or rewind. For those of you who have not watched Wipe Out, it is very funny.

Pajama Pics

I just had to take some pictures of Ava in her Elephant PJs before she grows out of them.

Ava hits double digits...

Ava is 10 months old. Here is a set of pics!

Prayers Answered

We are very thankful to everyone who was praying for Zachary. A solution to the secretin supply has been found. It will require changing the type of secretin and a little more cost to us but we are so blessed that Zachary will not have to be without it.

Zachary

Since Zachary was 4, we have administered a treatment to Zachary called secretin. It improved a variety of "symptoms" related to autism in dramatic ways. It is not a proven treatment for autism but we did our own studies by taking him off of it periodically to test and see what the teachers noticed (not telling them). They could always notice when he was off of it and we could definitely notice in big ways. This used to be given through IV push which is how we met Alita and how she made what seemed to be, at the time, a small mark in our lives. She was the only one that could do the IV in his tina hands and was so giving of her time by volunteering to do it during lunch. After two years (every 6 weeks) of that, John (vic's brother the pharmacist) and Jennifer (at Dr. Hughes’ office) found a transdermal method that we rub on his back every night. This is a much easier method than the IV as you can imagine.

Here comes the prayer request. John called Victor today and said there is a backlog of orders due to increased awareness of this treatment. So, we have two days of treatments left and will not get more until November at the earliest. There is only a one month shelf life and very few companies that produce it because it is not a big money maker (small population of people needing it – and few uses). So what to pray for?

My first thought is "please God, minimize the effects of not having the treatment."

But then my brain and memory take over reminding me of the sleepless nights and no hugs. My first hug from Zachary came when he was 4 not long after the second secretin treatment. I still remember feeling his little arms around me for the first time. I have that picture in my office and I treasure it more than words can say.

Then I move to "Thank you God that more people have seen the benefits and been able to get that first hug, playful smile, or even direct eye contact for more than a second. Please God, help the company make it faster so that everyone who needs it will have it!"

Next - "God, help John find another source even if we have to administer it through IV's again. If that is the case, please bring us someone like Alita who can bless us with the gifts God gave her.”

As most of you know, Zachary will transition to a new school in August. This is a hard event even with the secretin treatments. So, I pray for this to go well and that his teachers and the new students will all adjust.

Zachary expects so little of us compared to what we expect of him. That is probably the hardest realization I have expressed in many years related to Zachary's autism. Having a baby in the house and watching her hit all of the milestones has brought so many questions back to mind. Did Zachary do that? How old was he when he did that? Why don't I remember him doing this? So the prayer that I will go to bed tonight with is "Please God help Zachary know how much we love him and are here for him no matter what."

July 4th

Happy Independence Day and Happy Ava 9 months!

Ava is 19 pounds and 28 inches. she is growing fast. She crawls, has two teeth and waves to everyone.