I Believe in Miracles!

God is totally and completely awesome- to be awed! I am choosing to believe today that Lucas is healed of seizures from this day on. That's right. That's what I believe and no doubt from anyone can sway me. I do not claim to understand the master plan of God nor do I believe anyone else can. I do, however trust Him. I don't understand the way He chooses to go about things, but I believe that He knows much better than I do and I am absolutely confident that I would screw up everything if I was in charge for even 30 seconds. :)

On a typical day these past many moons, within the first 20-30 minutes after waking, seizures would begin afflicting Lucas. Lately, within the first two to three hours, I've counted at least 25, often as many as 50.

BUT NOT TODAY!!!!!!

Lucas had a bit of a rough night last night. He fell asleep and woke again at least 5 times. He finally slept solidly from about 0315 until 0545 when we began our day with some snuggles and singing and pee-pee on the potty. :) We made and ate breakfast, and then got cleaned up. Lucas took a little nap while I started a load of laundry and tried to figure how to get music onto my new ipod. After he woke up, we played a little before I decided to call Marc to say, "I think Lucas is healed of seizures!!!" As of 0940 this morning, he had not had a single one! Praise God and God alone!

I have always believed that he could be healed, as I think many others have also, but I have never doubted that he would be healed as well. I want to share this with all of you, those who believe to join with us in faith in claiming that we are forever finished with those seizures and those who doubt as an encouragement to believe.

Today was going to be a day of hardship, as I was going to call Dr. Burris and tell him that we were going to go ahead with a new treatment, one that we would prefer to not explore. Now, however, we are not going to do that, not today and not ever, I am believing and praying.

I know that lots of people may think (or, perhaps, absolutely think) that I am crazy or at least sadly demented for thinking this way, but I believe that our faith plays a pivotal role. There are many mentions of people being healed according to what they believed possible or of not many being healed because there was a lack of faith. I know that God can heal. I know that He does. I have been certain that He will heal Lucas and I say, "Why not today!?!" I pray that you stand with us in this and we will, of course keep you posted. Whatever the days and years ahead bring us, there is no doubt that God's grace will continue to carry us.

To update you all on CJ, my friends' little boy who was in the PICU, he is home and doing really well! Also, another little "testimony": this coming weekend marks 8 years since I was healed of asthma. Say what you want, but I know that one day I could not breathe without my meds and the next day and ever since, my lungs work fine. I even took up jogging for a while!

Here are some pics for you to enjoy from this month. :)

Blessings, rejoicing and faith!

June 2009

Another Week

I talked with Dr. Burris (the neurologist) Monday morning and he said that though we had not yet seen a decrease in the number of seizures (sz) after the initial decrease when we stopped the Banzel (drug we started in February), if we give it another 7-10 days, we might yet. Since stopping the Banzel, the numbers have mostly been between 75-90 sz/day. Yesterday, I'm guessing they were down between 65-70. (I only actually witnessed around 50-55, but I allow for more when I'm not around, b/c I'm cutting the grass or polyurethaning a door, as was the case yesterday.)As of noon today he had had about 50. We'll see how the days go and I will let you know how things have progressed next week.

For now, he is napping and I need to sand and do a second coat of polyurethane on the door while he's out. Thank you all for your prayers. We know that we are entirely weak and worthless were it not for the strength and love of God. He carries us so gently through everything and we are forever grateful. His grace and mercy for us is beyond measure and we will eternally count ourselves blessed to know the Love of God through the life of Lucas and his wonderful joy (as well as in countless other wonders!).

Blessings to you all.

Glory and Wisdom

Hey there, all.

I just wanted to send out a quick update. First off, I want to thank you all for joining us in prayer for my friends' son CJ who is now out of ICU!! After being in a drug induced coma and sedated for so long, he is having some withdrawal symptoms, but he is improving steadily every day. He is breathing on his own, his lungs have cleared up and hopefully he will be returning home in a few days. What ever you may believe, I want to give glory to God, not just for watching over CJ and bringing him back to health, but for giving grace to his mom and dad and little brother. I thank God we have not had to face a situation like that, but remember how we were carried through Lucas' time in the NICU. I can tell you for certain that we were not on our own strength, but God was/is more than strong enough to carry us through.


Regarding Lucas of late... He has been completely finished with the Banzel for a week and we have seen a drop in the number of seizures, for sure. It has been, I think, 5 days since he has been on the full dose of the Keppra XR. However, we have not seen a marked decrease as of yet. It is still early, but I believe we should already be seeing some difference. Two days ago he only had ~55, but yesterday it was ~85. This morning, in the first hour and 45 minutes he was up, he already had 42. He has not, however had but 3 more in the hour and 20 minutes since then (though I could have missed some).

If this is unsuccessful, we face two rather unfavorable options, Depakote or the Ketogenic Diet. My heart breaks seeing Lucas have so many seizures. Knowing how severely they may be holding him back is also upsetting. Though I have been sleeping recently (Thank You, God!!!), I discovered this morning that I am still quite emotionally exhausted. I found myself filled with a mournful agony as I held Lucas' hand with my left hand and his head with my right while he was stuck having seizure after seizure. I could not stop my tears. The love that I have for my son is beyond words and I so desperately desire that he be free. There seem to be risks with every option, risks that we hate to conceive ever becoming realities. I am asking that you please pray for us, that Marc and I would have the wisdom of God in our decision making. That we would do what is right for Lucas no matter what that means as far as adjusting our lives.

He needs me now so I am off to snuggle him. Thank you again for your faithfulness. I pray that you all know the joy that we have in God as you walk through your life today and every day and that you recognize the gifts that He so freely gives, in those around you as well as the provisions he supplies.

Blessings, love, thanks and joy!

This past week with Lucas

Last Tuesday morning we saw Dr. Burris. We discussed different medication options and agreed to take him off the Banzel (which we had already begun to do on our own). Before beginning Depakote, we are going with the extended release tablet of the Keppra. It is a 500mg tablet, about 2 1/2 times larger than the Banzel (or the average ibuprofen tablet), and it must be swallowed whole. Part of the tablet is absorbed in the stomach and part in the intestine, to extend the release of the drug. To crush or cut the tablet negates the extended release. We began the Keppra XR Thursday morning. Yesterday we added an evening dose and Wednesday we will increase the evening dose from one to two tablets. He has had no complications swallowing it even though it is so big and cannot be chewed into smaller pieces, praise the good Lord! Thus far this morning he has only had 29 seizures and he has been up for nearly 3 hours. This is still far more than the ZERO we desire, but it is a great improvement from the 65 he had had yesterday by the same time. This is wonderful news and we pray that within the next week or two we can celebrate a total annihilation of the seizures. :)

Last Wednesday afternoon we received a rather lightweight box about 3' x 2.5'. It contained a much smaller prize of the Bumbo potty seat! Lucas loved his Bumbo chair and would still be using it if he wasn't so ginormous. :) I imagine the potty training journey will not be a short trip, but we've got to begin it sometime, right? One of the signs of readiness is extended periods of dryness. This is something Lucas has been having for a few months and I decided it is time to see what he thinks about sitting on the potty.

Thus far, we have had two poops and a pee! This morning, actually was the first time ever that Lucas stayed dry all through the night! We are very excited and immeasurably proud of him. Through all of his battles, he inevitably comes forth in victory and we are overjoyed. Things are not as we would prefer, but the celebrations along the way carry us through like wings of hope. God is good. He is so good. :)

I've added a few more pictures to the Random Spring '09 collection and some pictures, mostly of animals, from Lucas' first trip to the zoo. The links are below. :)

In closing, I would like to ask any and all of you who feel so compelled to join us in prayer for a few others. Marc's cousin Alex who had surgery a few months back for chiari malformation (a very successful surgery and recovery, Praise God!) has had a recent resurgence of the Lyme disease that has afflicted him for a few years now. They have also just been informed that his brother Tyler also has the infection and it appears to be as severe as Alex's. Lyme Disease is a bacterial infection carried by ticks and passed to humans by a bite. It affects the body in many ways such as pain, often severe pain, throughout the body but more focused in the joints, as well as in visual disturbances, rash, and fevers. Also, dear friends of mine have this past week been fighting in prayer for their adorable son CJ. He got sick very quickly and ended up in a medically induced coma while they treat him in the pediatric ICU for pneumonia in both lungs, rhino virus (the common cold), influenza A, swine flu and a yet unknown (last update I got) bacterial infection.

We know that God is the Great Physician and pray that His wisdom would be the only wisdom applied in all decisions for Sandy and Maria (Alex's and Tyler's parents) and Bill and Mei Yee (CJ's parents) and the medical teams working with these wonderful boys and their families. We pray peace and the comfort of the Lord over and through them and, of course, their complete healing and recovery.

Thanks and Blessings to you all!

The DeSantis Clan

Random Spring 2009

Lucas' first trip to the St. Louis Zoo

More than Enough

That's how I feel lately, about these stupid seizures (sz) and the struggle to successfully treat them with medication, but also about the wonderful grace that God so freely gives.

To update you all:
We increased the Banzel while we were in NY for Lucas' birthday. I think that I increased too quickly. (I was not instructed to take my time, but always have in the past and believe it was a mistake not to have done so). After the first day of increased dosing, Lucas woke at 0330 stricken with sz and unable to return to sleep. This has pretty much been the pattern since. He has been waking at 0330-0400 and has had difficulty sleeping in the night as well, waking an hour or so after falling asleep and again having a difficult time getting back to sleep on several nights. His sz have increased to an average of 80-85/day, topping out over 100/day more than once. This is the most that we have ever seen him have and it is totally unacceptable to us.

I talked to the neurologist's office again this week and explained the situation. Initially, I was instructed to increase the Banzel again, but after the doctor had a chance to review Lucas' chart thoroughly, he said that he wants to try putting him on Depakote. This is one of the drugs that we have been trying to avoid because one of the possible side effects is fatal liver failure. It would require getting blood work done before beginning the drug to get a baseline of Lucas' liver and kidney functions and then getting blood work done regularly after that to make sure that everything is working all right.

After getting this call on Wednesday, I felt like I might have a melt down. Weeks of sleep deprivation and months of sz frustration have been wearing me down. The thought of trying something that I know has possible severe side effects ripped at my heart and I couldn't stop the tears from pooling in the corners of my eyes. I so desperately want him to be well and I despise the thought of putting him in any kind of even possible danger.

Through all this though, I must say, I am amazed at the grace of God. I have heard it said so many times since first informing people that we were expecting a wonderful child and I was in the intensity of my final year of nursing school that "God never gives us more than we can handle." I know that I have said this in the past as well, but the truth is, that is not the case. If anything is clearly defined on the subject, it is the opposite that is true. God gives more than we can handle on purpose. He does not desire that we "handle" our lives on our own, but that we share our struggles and all the weights of our little worlds that bear down on our shoulders with Him. He says that if we ignore Him and go off on our own, we will assuredly face struggles and we won't be able to save ourselves because we aren't meant to. But, He can save and has saved and does save and will save us. He also grants us a beautiful bounty of grace to sustain us through whatever hardships we may endure.

To be clear, I am not suggesting that all hardship is result of our turning away from God, but all hardship should absolutely bring us closer to God and in doing so, we are given joy that wells up within us that shines through every moment of the dark times. There are always more things in life for which to be thankful than we could ever find about which to complain. I thank God that Lucas' joy remains in spite of this struggle. I thank God that in spite of all the struggle we have faced as a family, that we have Lucas with us. I thank God that we are closer as a family every day even though the struggles remain, that Marc and I have learned (and continue to learn) what it is to love and how to express our love to one another and Lucas and others, friends and strangers. I thank God that He would choose us to be used in such a way that we might be able to share this love with all of you out there connected through cyberspace. I thank God for the internet, for our computer, for our house, our solid roof, our heating and cooling, our washer, dryer, fridge, stove/oven, et cetera, et cetera. Lucas is joyfully squirming in my lap, so I will stop for now. Hopefully you get the point. :)

I don't know what we will do as far as the next treatment attempt for Lucas' sz. We will meet with the doctor next week and come to a point of decision. In the meantime, I am slowly weaning him off the Banzel. We'll continue the Keppra and I'll try to update you soon after we decide what to do next. I thank God for all of you and pray that you are drawn closer to God, that you release your burdens and struggles, fears and pains to His loving care and that you know in every moment His inexplicable joy.

Blessings of love to you all.

Here are some pictures for your viewing pleasure. :)

Lucas' 2nd Birthday

Random Spring 2009

Meds changing again

I have been meaning to put up another update since the Monday following our Vacation, the 27th I think it was, but haven't gotten to it. The computer/internet is sometimes my nemesis and I prefer to avoid it. I feel like it has an uncanny ability to suck the life out of me right through my finger tips. Frighteningly amazing, huh? :)

Anyway...

We saw Dr. Burris, the neurologist, that Monday and I informed him that Lucas has at least twice the amount of seizures in the first part of the day than in the second so he suggested increasing Lucas' Keppra (the med he's been on for some time now that seemed to be quite successful until last October when we missed a dose in the chaos of me being a bridesmaid which threw the entire evening totally out of the norm) to 4 doses a day verses the three times a day we have been doing since last fall. The thinking was that getting the meds in him earlier will get the day started better. The plan has, however, failed miserably. His seizures seem to increase every day by 5-10. Yesterday he had 70 but the week before only 28. Also, the number of seizures in the morning has not decreased. Yesterday he was up at 0530 and by 0730 he had already had 45, by 1200, 58, but then only 12 or 13 more the rest of the day. Frustration!!!!

Today I talked with his office again and we are increasing the Banzel (the new drug fresh on the market this January that we began in February; we had blood drawn last week to check the serum level, the results of which indicated that it might be good to increase the dose). We are going from 1 1/2 tabs twice a day to 2 tabs twice a day. Also, since the 4th dose of the Keppra seems not to have caused a lick of improvement, we are going back to three times a day on the doses, but increasing the total amount taken daily by 1mL so he will have 4mL three times a day vs. 4mL, 3mL, 4mL which we had been doing.

Basically, all this gibber-jabber means that we are still battling seizures, but I am hopeful that I might actually get a full night's rest for the first time in almost a month. At simply the thought after typing that, my shoulders relaxed and I felt a wave of peaceful hope rush over my body. Thank You, God for sustaining me and thank You that tonight I will sleep (please)!! :)

Thursday Lucas will celebrate the second anniversary of his first air breathing day and we are quite excited as well as a bit flabbergasted looking back over the past 2 1/2-3 years. Our little moose who was once just a tiny peanut (we have an ultrasound pic to prove it!), the sweetest most wonderful little boy whose life has made our lives immeasurably better, he is two years old. How much and how fast and how amazing. I will say once again (though certainly not for the last time) that there can be no doubt of the love of God that He has been so gracious as to entrust to us the Gift of Lucas. We are truly blessed, not only by him and his bountiful joy, but also by all of you who are so faithful in loving him and lifting him up to the good Lord as well. May you all be blessed and filled with joy this week as we celebrate God's goodness in the life our son!

Too short.

That's the best answer I can give in response to the question, "How was your vacation?"
It was beautiful. It was wonderful to be away from the hum-drum in which we so easily become absorbed. It was windy, which wasn't too bad, but affected some of our activities such as snorkeling (really for Marc; I was on Mommy duty) and taking Lucas into the water- well, more like coming out of it into the breeze. :)

Lucas started getting sick a couple days in and ended up pretty sick with a high fever and sleeping most of the time. He is still oozing snot and coughing, sweet little champ.

I haven't slept much due to being up with Lucas and missing opportunities to nap, so though I could say more, I'll save it for full ( or at least closer to full) brain function and leave you with a few (100+, actually) images of our Grand Cayman adventure, our first real family vacation and Lucas' first international journey. :)

Blessings to you all!

Grand Cayman 2009