Nothin' Yet

Big little word, "Yet". We believe something is coming.

Lucas has been on a dose of Depakote twice a day for 2 weeks now and we have not seen a remarkable/consistent improvement. We saw Dr. Burris again today. (I really do like him, I feel I like him more each time we see him. He is so kind and gentle and silly with Lucas.) He directed us to increase the Depakote again as of this evening's dose and we will call to check in with him next Thursday. Depending on the results we see over the course of the week, he may instruct us to begin weaning off the Keppra which, though once upon a time last fall it seemed a wonder drug, has of late been nothing but a horse pill Lucas has championed in swallowing -most of the time. :)

He is such a champion. He remains to be cheery and wonderful. I think we have hit a bit of 2 year old behavior on occasion, but we count it good when we see normal developmental behavior. So, though he has thrown a few brief fits when he objected to something, it was minor and the fact that he did it at all causes me to rejoice. :) There is much for which to be thankful. :)

We also have recently been put in touch with another family through one of Lucas' therapists as a support family. They have an amazing story and as soon as their website is up and running I will be sharing that with you all. I am certain they can tell their story better than I could and I don't know it completely, but briefly, I'll share that the parents' names are Stephanie and Doug Brawley and their children are Dougie and Emily. They are a pair left of triplets born 16 weeks premature, now 2 years old. Both had lots of hurdles to jump and they have overcome much. Their parents love them incredibly and are now hoping to receive a respirator so that Emily, who has only spent about 4 weeks of her life at home, can come home to stay. They live in a more rural area, so getting the equipment they need to reunite their family has proved difficult, but they are confident, as are we, that it will work out.

I need to get the boy to bed now. I will update more about Lucas and The Brawley family Soon. Thank you always for your love and encouragement. That you forever and ever for your prayers, for us and for others we tell you about.

Blessings.

So it begins...

We started the Depakote last night. We do 7 days at once a day and then begin twice a day. Two weeks after that, we see the doctor. Our faith remains in God. We'll keep you posted. Thank you for your love and prayers.

Here are some pics from July, so far. I'm sure we will add more, but you can have a look at what we've got already. :)

Blessings,
The DeSantis Clan

July 2009

It was the best of times; It was the worst of times

Last week began with an amazing morning, empty of seizures. We were so excited (and remain to be) about it. The rest of the day was filled with the nasty little spasms and every day since has had them too, but that glorious time will be forever in my memory as a wonderful time, a time of peace and relief, a time of freedom. It makes the list for "the best of times", for sure. A time, I believe we will have again, but have not had since.

This past Sunday, the 5th, however made the "worst of times" list as the seizure count topped off around 140, yes, one hundred and forty. Miserable, right? Yes, I'll answer for you. It was miserable.

In light of this continuation and severity of seizures, despite the freedom enjoyed for a beautiful morning, we have decided to go ahead with the plan for Depakote. This is a drug we have been avoiding since the beginning. It has an excellent track record (and it is a looong track, been around many many years) for success, but it also has side effects that we'd rather not entertain. I do not believe we will face any horrible side effects, but the thought of giving our son something that has such a potential is not an encouraging one. So, today I am taking Lucas to the lab to have blood drawn to get a baseline liver function test. After the results of this come, the Depakote therapy can begin. While taking depakote, liver function is monitored regularly via blood work. I think it is every 3 months, then 6 months after a couple tests come back all right.

This is not what I expected after Monday morning's joy, but, as I said, I know that God is still in charge and is with us in every thing. I do still believe in healing and do still believe I'll see it. Whatever the reason we had the freedom Monday morning, and whatever reason we haven't had it since, I do not know. I know that the seizureless-ness had nothing to do with us. After a rough night, Lucas almost inevitably has had a increased seizure count, not decreased, and certainly not an absence of the little jerks. We believe God did something and are awaiting Him to do more. In the mean time, we want to be the best care takers we can be and pray that we make the right decisions in doing along the way. This is not always (or hardly ever, perhaps?) easy, but we also trust that even if (though) we mess up, God can take care of that too. So, we are going ahead with conventional medicine, and praying that God does what He wants however He wants. I believe that the medical profession can be and is used as a tool for God, not in opposition to Him. I think the most important thing is that the trust lies in His hands, not the doctors, or medicine or whatever else. That is where our hope lies, with Him. He has entrusted Lucas to our care and we are confident that He will teach us to care for Lucas as He cares for Lucas.

I pray I haven't confused you all. As I said before, I do not know how to explain the degree of my faith. It is how I was made. I pray that God will give me the words you need to hear (read) to understand, at least understand enough for now. :)

I need to get Lucas to the lab now so I can get home to make dinner for me and my favorite fellas. :)

Blessings.