Slackers of the Universe

I know - it's been too long.

The past couple of months have been exciting and stressful. The day after we got back from New York, we discovered that Esther is pregnant! She's about 14 weeks along now, and she is finally feeling like a normal person again (at least mostly). There was a good 6 weeks when she was terribly nauseous all day and all night long, and was basically curled up on the couch all day trying not to move. We had an ultrasound at 10 weeks and the doctor said everything is looking very good. Today, we'll be going in to hear the heartbeat.

Lucas has been doing well these days. He's been getting better at holding his cup, and his seizures are somewhat in control. He has some days that are worse than others, but he's typically been around 10 seizures or less for the past month or so. He hasn't been sleeping through the night in quite a while, but he seems to be getting a little better there too.

Here are some pics from the past 2 months:

November / December 2009

That's some serious sipping

Since coming back from his "vacation" in New York, Lucas has been focused on getting his sippy cup to his mouth. He doesn't quite have the strength to lift the cup on his own, but he's doing a great job of using his hands to bring the cup (and even his spoon sometimes) to his mouth. He even grabbed the cup with both hands a few times this week.

Go Lucas!

Here's a video clip from yesterday

Just back from NYC

We just got back from a great trip to NYC, where we got to hang out with family, go to cousin Joseph's wedding and even visit the aquarium.

Here are some pics, along with a new album for pics from last month

October 2009

September 2009

A new development

Not much of an update related to Lucas' seizures. We've had good days and some bad days. The seizures that he's been having for the past couple of weeks have generally come in clusters. On Wednesday, we increased his Depakote again, so now he's taking 3 pills at breakfast and 2 at lunch and dinner. It should be a few days before we notice any difference.

Just this week, Lucas started showing some interest in holding his cup. Lucas loves to eat and drink, but has never shown any interest in doing so on his own. So we're excited, and are looking forward to the day when Lucas will be throwing his cup across the room and shoving raviolis into his mouth with his hands. Here's a video clip from last night:

I should be making dinner now

It's been so long and there is so much to say. There are also photos to post. Lots of photos. For now, I'll just share with you all the wonder that is sleep and the asphyxiation of sleep deprivation.

For, I think, around 7 weeks, Lucas, for an unknown reason, began not sleeping well through the night. This overflowed into difficulty sleeping during the day as well. Two days after the sleep-mess began, we began changing his meds. We decreased and eventually ceased the Keppra and increased the Depakote three times. We saw no change, however. He continued to have between 65-100 seizures daily. Wednesday before last, Lucas had a fever in the morning (104.1) and Thursday ended up vomiting. His fever was gone by Friday, but he wasn't fully back to his normal character until Sunday.

I want to be clear that I hate to see him not well. To know that ibuprofen, fluids and snuggles are all I can do is painful. In spite of this fact, I will say that in retrospect, it was a blessing that he was sick because it threw him into a more normal sleep pattern again. Instead of going to sleep for 30-90 minutes and then being awake for 1-3 hours and sleeping again for 2 hours and waking again for 45 minutes before sleeping another 45 minutes before starting the day with potty and breakfast as had been the routine for soooo long, he started staying asleep from around 10pm until at least 6am. It felt like a miracle.

I began to feel like I could hold a few thoughts and even follow through with one or two, but Lucas, Lucas stopped having so many seizures. In fact, one day, we counted only 7! SEVEN!!!! For the whole day! How amazing is that!?! He has still had a few clusters here and there, one day having only 21 until around 715pm and then in the next 35 minutes having another 70. That was rough. Last night, he went to sleep well and then coughed in his sleep, but it was enough to wake him and threw him into a cluster so we topped out last night at 50. He then had trouble sleeping again last night and his numbers have been higher again today including two clusters and about 10 while he took a short nap. So far, we are at 62 including the sleeping seizures.

I am praying desperately that he will return to sleeping well tonight and will continue forever. It is remarkable how severely I have been affected by not sleeping. As Marc mentioned, I have been struggling to hold on to my sanity in some moments. Mostly only when Lucas has had a slew of seizures and when I have finally fallen asleep only to have to get up again because Lucas is up again.

Yesterday I felt pretty all right, still not a 100%, but at least 65%. Today, however, I feel like I have been slammed right back down. I know that we will get through this and I can absolutely testify to the sustaining grace, mercy and love of God. I don't believe I would survive this otherwise, certainly not in good temperament and a thankful heart (and get dinner made almost every single night!).

Lucas remains to be a joy and we are believing for big, wonderful things for him coming soon. If we lick this sleep thing, I think we'll lick the seizures. If we lick the seizures, we can schedule eye surgery. Once he has that corrected, we believe he'll be able to learn to see better. Once the seizures are gone, we believe we will see lots of progress.

I really need to get to dinner and the dryer is calling me too. :) Thanks for all your prayers. Hopefully I will be sleeping more and get back online to tell and show you more very soon. :)

Blessings!

Lucas don't you go and cut your hair

Sometime last year, Lucas started saying words like "Da da" and "Ma ma". Not sure if he knew what he was saying, but at least it sounded like it. Then one day he stopped, and our feeling was that it was because of a medicine change. A few weeks ago, he started to get pretty noisy - which is just what he did before he started "talking" last year. So - we're hopeful that he might start saying words again. Here's a video clip of him being noisy last weekend



This week has been a rough one for Lucas (and Esther). On Wednesday morning Lucas came down with a fever. On Friday, he was screaming uncontrollably pretty much all day long, which we thought might indicate a shunt malfunction. Esther called the neurosurgeon, and they said to watch for projectile vomiting. But then on Saturday, he was fine. His sleep schedule is still pretty messed up, and Esther is trying to hold on to her sanity.

Back from the Space Coast

We just got back from a nice little vacation down in Cocoa Beach, Florida. Lucas wasn't a big fan of the ocean, but by the end of the trip he was really enjoying being in the pool!

Although we're not sure if we'll ever make it back down to Cocoa Beach, we got to see some pretty unique things down there - including a herd of manatees, the launch of space shuttle Discovery and some pretty amazing wildlife at the Merritt Island wildlife refuge.

Esther and I also both came back with a new appreciation for NASA and the things that they do. Previous to visiting the space center, we both felt like NASA was really good at wasting money and that was about it, but now that we've learned more about the research they're doing (right now they're working on a cure for osteoporosis up in the International Space Station) and got to walk through the 140,000 acre wildlife refuge that they share the Kennedy Space Center with, we've been converted.

Cocoa Beach 2009

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!

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

Grandma and Grandpa Brooklyn

Grandma and Grandpa Brooklyn came into town for a short weekend so they could get their fill of Lucas snuggles. The weather has been great in St Louis for the past few weeks, but this weekend it decided to rain all day on Saturday and snow on Sunday morning. So the plans to visit the zoo were replaced with a visit to the Butterfly House at Faust Park. The greenhouse was 85 degrees and very humid, which was a bit overwhelming. Lucas fell asleep within the first few minutes of being inside.

Grandma and Grandpa visit

In other news, Lucas is still battling through a lot of seizures. We will be upping his Banzel dosage again tomorrow, which will finally bring him to the goal dosage for his weight. The doctor wants to keep him at this level for 3 months to see if we notice any improvements. We're starting to become frustrated with the medicine, since we haven't seen any improvements lately - and the medicine is making Lucas tired more often and less alert than he used to be. Hopefully things will start to turn around soon...

Definitions Do Not Define Us

I have a confession to make: Though my faith in God and His sovereignty over everything including Lucas and our family is unwavering and has not wavered from even before his life was confirmed, my emotions have suffered a few injuries from the blows we've been thrown. We have said many times that if we did not have absolute faith in God when we met with a genetic counselor and neonatologist at St. Mary's we not only would have been convinced that our sweet child's life was worthless, but our own lives as well and, were we running without Jesus, we might have gone out and hanged ourselves because it was such a dismal and discouraging appointment. (That appointment didn't send me to tears, but rather to my 80lb heavy bag to blow off some of my serious anger with the two women who were so disappointed that, though I defiantly declared that we have no intention of even considering killing our baby, it was "too late for that anyway" -though if late term abortions were legal then as it looks they soon will be, I am certain they would have been pleading with us to follow through.) Still, the barrage of difficult news stated in the clinical and not in faith that there is One who desires good for us and has a plan that we may not understand but He promises to be with us every step of the way has been exhausting to my emotions at times. I have generally taken a day (or two or five) to heal the emotions of disappointment or fear or general sadness with the reminders of the amazing joy that is embodied in our son and that it doesn't matter what some clinician says (I don't care how many degrees hang on their wall!), because they don't know the Truth.

This most recent diagnosis of Lennox-Gastaut Syndrome (LGS) was another such blow for me. When informed that "seizures typically progress and become more severe" and then reading about it and all the things said that seem so terrible to me, I was at an emotional loss for sure. The turning point actually came when I read one definition of LGS that included the word "devastating". That is the same word used by the above mentioned neonatologist. I was suddenly relieved by the gentle reminder that God is still God and all those "smarties" out there do not know Lucas. I resolved to ignore the diagnosis and continue to enjoy my son, still being up on all his medication and clinical stuff as needed, but not believing that a definition could ever define Lucas.

We saw Dr Burris yesterday and I felt it was a great appointment. We are going to continue increasing Lucas' Banzel (the brand-spanking-new drug) to reach the "target dose" We have not noticed much of a change thus far, but improvement is not necessarily expected before the target dose is achieved. (We won't get there for about another 3 weeks and then we are going to give it 3-4 months to make sure it's working.) We discussed Lucas' EEG and briefly LGS. Dr. Burris said that he will almost never use the words Lennox-Gastaut because all that stuff out there trying to define what is basically just a specific pattern on an EEG, onset of seizures before a certain age and various types of seizures is ridiculous. No one can say that those with this diagnosis will have all that stuff that all those "smart people" out there are saying. It gives a new direction for treatment, but it doesn't change who Lucas is and never will. Hearing him express that point of view made me again thank God that we have been blessed with some really great doctors. :)

We had a great start this morning. With Lucas between us, we had him "find" each of us in turn, and again and again when we said "Find Daddy", he went for Marc and when we said "Find Mommy", he went for me. This is a great encouragement, being assured that though his speech is behind (so much more so after the Canadian drug), he is still understanding and is acting on that understanding. I am certain it is just a matter of time before the talking and walking and feeding himself and so many other things become a part of normal every day life. :)

Blessings to you all! Thank you for your continued love and prayers and tolerance of my incessant writing! :)

What we know for now

Lucas, as always, was a super champ for the EEG last week. He, thankfully, fell asleep soon after the tech began placing the leads on his head (a process which he does not enjoy). We kept the activities pretty minimum, no real therapy stuff, due to having a "ponytail" of wires coming off of his head connecting to a receiver in a little "back pack" that wasn't long enough for him to stand without me picking it up. That was then connected to another wire that lead to the wall. We had one more wire that we had to keep close that was the button I had to push any time he had a seizure. It was easy to get tangled and complicated to move much, so we didn't. :)

Thankfully, they were able to gather a lot of information and we now have a new diagnosis (Dx): Lennox-Gastaut Syndrome. Basically, this has to do with his age and the type of seizures (sz) he has. They said that his sz are "tonic", meaning they involve an increase in the muscle tone. They said that though his sz look the same way suggesting (outwardly) the possibility that they are located in a single location in the brain, they are, in fact, diffuse, involving the entire brain. They said that there is actually always some level of sz-like activity in the brain, even between sz. (I did not get a lot of clarity on this, but hope to when we follow up with Dr. Burris next Thursday.)

Typically, I was told in the hospital, Lennox-Gastaut is treated with drugs that have more severe side effects, liver and bone marrow damaging side effects. Last month, however, a new drug hit the US market called Banzel. It has very mild (known) side effects including dizziness and fatigue, the same kind of side effects the other meds he's tried have. Being that this is a brand-spanking-new drug, it is not easy to get. We had to go to a special pharmacy about a half hour away to get it, but it finally came in today so we will start him on it tonight. They said that we should see results pretty quickly and we are hopeful that they will be excellent. :)

If you decided to read up on Lennox-Gsataut, then you may have read that it is uncommon for children to grow out of sz disorders all together, though they do "grow out of" Lennox-Gastaut. Typically, sz change and new Dx are made. This, of course, is not news that we prefer, but our faith remains in God Most High and we know that He has Lucas' best interest in mind, always. One tiny example is that if we had scheduled the EEG just 2-3 weeks earlier (as I was anxious to do and rather frustrated in waiting), we would have only had more harsh drugs as our options. As it worked out, though, we now have a much preferred option. A nice reminder of how God is always in control even when we try to take that control from Him. :)

We had the wonderful gift of watching Lucas begin his adventures in walking that raised our spirits immeasurably high. We hope that the video does the same for you. (I also apologize for the sometimes annoying pitch my voice takes as I squealed with excitement.) Her also are some pictures for your viewing pleasure.

January/February 2009

Thanks for your love and prayers. We are certain they make things far better. :)

Walking through the kitchen

A few weeks ago, Lucas got a gait trainer - which is a walker with extra supports that will let Lucas learn how to walk. He hadn't really figured out how to move around in it yet, but on Friday Esther put him into the walker and he started scooting around right away! He wound up walking through the kitchen three times. Here's a video of the 2nd time around (which was also the quickest):

EEG Tomorrow

Tomorrow morning Lucas will go into Children's Hospital for 24hr EEG monitoring. The hope is that by watching Lucas' brain as he has seizures, the doctors can learn more about what's happening and be able to figure out the best way to treat them. Esther will be with him the whole time, and I will be there in the evening. There is no cell phone or laptop usage allowed in the monitoring room, so Esther is going to bring some DVDs and toys to try and keep them both occupied. She picked up the DVD for Disney's Robin Hood last week and is itching to watch it...

Sorry, Betty, Again

Today is the first time since we've returned from NY that I have spent any significant time on the computer. I know, I know. Adjusting to being back (which does not include even checking my e-mail), taking turns with varying degrees of illness, and then having some snow keeping Marc working from home a couple days combined with my typical internet avoidance resulted in the long absence. So without further a due, here's the news:

First off, we are all finally feeling better. Marc had a stomach thing followed by an upper respiratory infection (URI). Lucas also had a URI and it held on for almost 2 weeks. After they both were almost back to wholeness, I got sick.

Being that the surgery is still on hold (for both the eye and the boy parts), I felt the need to follow up with those doctors. We saw Dr Lueder, the ophthalmologist, first. He said that we should continue patching an hour a day. The surgery can wait. He said that there is no indication of any loss of vision, so that is good news. He also said that Lucas is a bit near sighted in one eye and far sighted in the other. The discrepancy isn't enough to require corrective lenses at this point, however. I feel like this might help to explain some of his apparent struggle to focus on anything unless it is within a certain proximity: falling, for one eye, close enough and for the other, far enough so that both eyes can be put to good use. :) Dr. Lueder said that we can schedule surgery at any time and come in for a pre-op appointment, but if it doesn't happen within 9-12 months, we should come in again just for a regular exam.

We saw Dr. Austin, the urologist, the following week. He also said that Lucas looks great and that we can schedule surgery any time within a year without need of another appointment. If more than a year passes before we are able to schedule the surgery, we should schedule a pre-op appointment first, but he's not at all concerned. He said he's fine with doing the surgery anytime, though he would prefer to do so before adolescence.

We, of course, are praying that we will be able to schedule to surgery much sooner than a year from now and certainly long before adolescence. We are waiting for the all clear form the neurologist, Dr. Burris. He wants Lucas to be free of seizures for at least 2 weeks before scheduling. Since removing the clobazam (the Canadian drug), we have seen, Praise the Good Lord, a decrease in seizures! He is still having a slew, but probably 20-30 less per day at least. We also have hopes that his talking will again begin to progress.

We have scheduled the 23 hour videoed EEG at Children's hospital for the 11th of February. We will arrive at the hospital around 0830 and get registered and get Lucas wired. He will have a little back pack holding the monitor. We will keep our typical routine as best we can and stay over night. (Marc will likely be at work all day, but will come after. He will go home to sleep, but I will stay at the hospital with Lucas.) We will then be able to leave "sometime" the next day. We will have a follow up appointment with Dr. Burris 2 weeks later. We don't know where he might go from here, but we'll let you know.

Also, there is a Doctor Marc read of who does research out of Chicago on one of the apsects seen in Lucas' brain, polymicrogyria. This is the likely culprit causing the seizures. He will look at MRIs sent to him and give an analysis. If he thinks Lucas would be a good candidate for his research, there might be some testing and I don't know what all exactly, but it is something we are looking at doing.

Lucas also got his new Pacer gait trainer. (It is a fancy-little-kids-teach-you-to-walk-walker- thing. ) He only got it last Thursday, but is already doing really well. He doesn't seem to mind being in it and is able to scoot himself a bit, backwards of course without help, but if we prevent him from going back, he will go forward. It will be a process, as everything, but it is a very exciting beginning.

That is about all for now. We'll get some pictures up soon so you can see Lucas in his new bow flex, as my mom likes to say. :)

Blessings and love and thanks for standing with us, with our amazing little boy. :)

Buy american

After trying the Canadian seizure meds for a few months, we've noticed that not only does Lucas seem to be having MORE seizures than before - but he also hasn't been saying words (Da Da, Ma Ma) like he was before. So Esther called the neurologist today and he agreed to take him off of the medication. Like all seizure meds, we need to ease him off of it. So it will be about a week before he's completely off of the Canadian drugs.

The doctors still seem confused about how to best handle Lucas' seizures. He is still taking Keppra - which is the medicine that kept him seizure free for the first few months he was on it. So we are planning on bringing Lucas in for a 24 hour evaulation at STL Children's Hospital where he will be hooked up to an EEG so that they will be able to monitor his brain while it is seizing (and hopefully will learn how to stop it from happening). We haven't heard back about when this will happen, but it should be within the next few weeks.

Christmas Celebration

We had a great time spending the holidays in NYC with family and friends. I posted a bunch of pictures from the trip

Christmas 2008

Update on Abby

Hey there all!

We pray you are remembering to thank God for the gift of beginning a new year. We pray that this year for you and for us is a year of miracles, that we would all have eyes to see them all around us, every day.

Returning from NYC from a 15 day holiday relishing in the reunion of family and friends, I am near overcome with a spirit of gratefulness. Staying in the basement at Marc's parents' house is really not so bad at all. We have plenty of space for us three and our own 3/4 bath. Having all the extra loving hands and eyes around was wonderful too. (I still keep thinking I need to watch out for Lucas losing a sock to Lacy, the adorable little princess of the Brooklyn family.) Coming home, however, I have been amazed at how much space we have, how much stuff, nice stuff too. I walked all around our house when we got in late Friday night and kept exclaiming, "Thank You, God!" for our house, our furniture, our yard and gardens (which are hibernating for the season), our bills getting paid, improvements we've been able to make, our plans for future improvements, etcetera, etcetera. All this is an immeasurable abundance on top of the infinitely more immeasurable abundance of love we share. God is so good. I pray you realize this. There can always be found things about which we can complain, but eternally more, there are things all around us for which we can thank God, simply the dynamics of the placement of the planet exactly as it is allowing us to have sustainable life is a wonder scientists are still attempting to fathom.

Ramble. Ramble.

I want to write today to ask you to join us in our continued prayers for little Abby, Abigail Grace Steer, the little girl down the hall from Lucas in the NICU who was born with a massive and aggressive brain tumor and was sent home to die. After drastic surgery and chemo, she has been making miraculous progress and has been cancer free for 9 months now. Recently, however, they have again come upon choppy waters, waters that seem relentless and demanding that all hope be abandoned. They are not surrendering to such an attack, but are pressing on. Please join them in their faith and support them in their struggle. You can read the info for yourself on their website.

We took hundreds of pictures and will go through them and put a bunch up for your viewing pleasure in the next few days. For now, Blessings and thanks for you r faithfulness and love for our family. We are more blessed than eternity has time to hear our thanks!