Oh Barbara Manatee

We've been on vacation in cocoa beach for the last week, and we'll
have a bunch of pictures to share of Lucas hanging out in the water
when we get back.

For tonight, I wanted to throw up a quick post to link to a video we
shot this afternoon of a herd of manatees mating off the coast of the
highway just outside of cape canaverel. It was a pretty amazing thing
to see, and a lot of the locals who had stopped to watch said they had
never seen anything like it

Hopefully tonight we will get to see the space shuttle go up!

Update 8/30 :

Looks like CNN was on the scene as well

http://www.youtube.com/watch?v=Bxds-rBstQA

Since then...

We talked with Dr. Burris' office on Tuesday and, Praise the Lord, Lucas' blood work came back looking good! :) I said that the seizure count had been averaging lower and he gave the "OK" to begin weaning Lucas off the Keppra. We dropped him by one tablet that day and in ten days. we'll drop another tablet and ten days after that, he will be off the Keppra entirely. He also said that he wants us to increase the Depakote by one tablet per day. So he now gets two of those twice a day and one Keppra twice a day. He's such a trooper swallowing those pills. Our little champ. :)

For whatever reason, Monday night, Lucas had a rough time getting to sleep (this is before any med changes). He then ended up waking at about 0430 Tuesday morning and struggled to get back to sleep because he kept having seizures startle him awake. He had a whole lot that day, repeated the struggle with sleep Tuesday night and Wednesday night and woke super early both Wednesday and Thursday. He had increasing numbers of seizures each progressing day as well. Yesterday, he napped well and went to sleep well. He woke about an hour-hour and a half after going to sleep and so I brought him into our bed for the night. He slept the whole night, until 0630 this morning. His seizure count has been much lower today too. He's around 50-55 now, just before 6pm. Yesterday, he had had as many by 0700. Needless to say, despite lengthy sleep deprivation, I am elated and have felt wonderful all day. :)

I need to get some dinner in my fellows now. Will update again soon.
Blessings!

I know, I know

I am not anti-internet, I just live like it sometimes. Marc gets on first thing in the morning, last thing before bed and countless times in between. I sometimes go weeks without more than checking the weather; sometimes I don't even do that. SO... My apologies again.

There isn't a whole lot to say. Lucas got sick, followed quickly by Marc. Lucas is pretty much entirely better and I think Marc will be in the next 2-3 days. Praise the good Lord, I did not get sick. I just lost several hours of sleep. I'm not quite caught up, but will be soon, I'm sure. In the meantime, hanging out with the most amazing boy is worth staying up for. :)

We called Thursday before last to discuss the effects of the latest Depakote increase, but with Lucas getting sick, the results were unclear, so we have been continuing the path laid out before that and will talk to the doctor's office again this week to see what they say. If they think the Depakote is working, we will begin to taper off the Keppra XR. I will be grateful for this as getting 4 pills in him with his dinner is not always an easy task.

We think, praise the Lord, that there has been some improvement the past few days. He has remained below 70 seizures/day for a few days running and even had 3 days when the count was in the 40's. Dr. Burris said the last time we saw him that his goal is to get the seizure count cut in half and I think that we are seeing that. We'll see what he says. We should be talking with him or his nurse either tomorrow or Tuesday as we are also awaiting results of Lucas' blood work we had drawn on Friday. It is the first blood work post-depakote, so we can see how his body (his liver, in particular) is handling the new drug. It will also check the level of Depakote absorbed into his blood stream. This is used as a reliable marker of safety as far as dosage increases.

I need to get the boy in bed now, but I thank you again for your prayers. I'll try to get up something else later this week. For now, I have added more pics to the July album and invite you all to enjoy!

Blessings!

July 2009

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.

Gotta have Faith

"Faith is the assurance of things we hope for, the certainty of things we cannot see." - Hebrews 11:1

I have faith. Strong faith. I believe that what I have not yet seen will yet be. I believe that Lucas' healing is complete, that, in time, we will see it completed.

Yesterday was an amazing day! A monumental day! A day to be celebrated, for sure! :) Lucas has not had such a lengthy period of wakeful-seizure-less-ness in months and months and months. He had a good 4 hours with out a one, praise God! It was more than enough of an obvious sign that something had changed. We had not changed anything, but I believe God did. He ended up having a chunk of seizures after that four hours of freedom and he has had plenty today, but Marc and I agree that yesterday's free-four is significant and marks the beginning of the end and I will continue to praise God for this and believe in full faith that the complete and total healing is fast approaching.

I pray that you all are able to celebrate and have faith also. I do not know how to fully explain myself to those who doubt. Faith has always come easy to me. I believe. Something in me knows that it is right and good to hold on to that belief, and so I do. Until the fulfillment of the things I know in the depths of me to be true, I also know that I know that I know that God is with us in every step, in every moment, facing anything and everything along with us. His grace is abundant in "good/easy" times as well as "bad/hard" times. He has seen us through everything thus far and will see us through everything to come.

We rejoice in His goodness in all times!

Blessings!