"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!
Tuesday, June 30, 2009
Monday, June 29, 2009
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!
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!
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| June 2009 |
Friday, June 26, 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.
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.
Friday, June 19, 2009
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!
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!
Monday, June 8, 2009
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
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
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| Random Spring 2009 |
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| Lucas' first trip to the St. Louis Zoo |
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