A little for now

We were recently reprimanded for not posting more frequently. I would like to apologize to Betty and to all of you who agree with her. :)

We have increased Lucas' Canadian meds again, but have yet to see any dramatic improvement. We will meet with Dr. Burris again in January and see where we'll go next. It is possible that even before our late January meeting that we will be at Children's Hospital for the 23 hour EEG. (Lucas will have leads on his head for an entire 23 hour period and there will be a video camera in the ceiling of the room to catch the visual corresponding with the brain waves.) I don't imagine that knowing where in the brain the seizures are occurring would affect medications since there is no way to target only one part of the brain, but perhaps it will help to give us some direction. I don't know. That is a question on the list for our next appointment.

We will have a load of pics up after the holidays, but there are a few up already if you want to have a peek at our handsome little guy and our good friends Katie and Carlie Fischer. :)

December 2008

November Pictures

Hey there All.

Hope you had a wonderful holiday and expressed your thankfulness for all the wonderful blessings you have in your life. Hopefully, you will remember to do so every day of the year, not just on a national holiday filled with gluttony. :)

Here are some pictures from the month of November of our little love for whom we thank God daily (and all throughout the day too!). We are also thankful for all of you and your love and prayers for Lucas and his mommy and daddy too. :)

Blessings to you all!

November 2008

Noah Vanderhoff presents...

A few weeks ago Esther and Lucas filmed an interview with a local cable access program on Florissant City television called "News You Can Use". The episode focused on the First Steps program, which is the early intervention program through which Lucas receives all of his therapy . It's isn't quite as cool as Wayne's World, but Lucas did look pretty cool in his Spider Man slippers and "Dude, your girlfriend keeps checking me out" t-shirt.

Most of the episode is an interview with the St Louis director of the program. Esther and Lucas' segment starts at around the 22nd minute. You can watch the video online.

Oh, Canada!

SO the seizures have not only not stopped, but they seem to be almost totally uncontrolled. We are not sure what happened, why this has become our situation, but it is, nonetheless. We saw Dr. Burris, the neurologist, last week. He thinks that the Keppra may not be working because it just isn't lasting long enough, but he doesn't want to increase the dose any further because Lucas is still so little. (Well, he is almost as tall as my legs, but weighs only 22.6 lbs.) In light of this, he has decided to try a new medication, again. This one is called Clobazam. It is a cousin of the clonazepam (Klonopin) that Lucas had been taking when he was having too many seizures a day and ended up taking daily for 4 1/2 months. He said that he has several patients taking this med and that he has seen some really great results.

Clobazam is not yet available in the US. It has been around a long time and has been used in several other countries successfully and without incident. There is a company who is in process to make it here in the States, but it is a long process and still has a good couple years before that happens. For now, we ship it in from Canada. It isn't too expensive, about $100 to get started and then about $35 every three months after that. We will see Dr. Burris again in about three months and discuss how things are going. We will, of course, be in touch regularly before and up to then as well as we introduce this new medication. He said that we should begin to see results within the first 2-3 weeks. If this is the case, he wants to immediately begin decreasing the Keppra, as it will be obvious that the new drug is doing the job and the Keppra will be unnecessary.

If, for whatever reason, the clobazam does not work, in three months Dr. Burris wants Lucas to have a 23 hour EEG at St. Louis Children's Hospital. We would go and stay in a small room and bring his meals and toys and Bumbo (his little blue chair). There would be a crib and, hopefully, a place for Marc and I to sit/sleep as well. Lucas would have the EEG wires attached to his head the entire time and there would be a video camera in the ceiling monitoring his activity and sleep as well. Dr. Burris is intrigued that Lucas' seizures involve a turn of the head to the Left while moving the right leg/arm. This suggests involvement of both hemispheres of the brain. Lucas' brain, however, is unlike any other and I wonder if the seizures are originating in the brain matter that runs up through the middle of this head like a peninsula. He had no seizures during either of the EEGs he had in the past, so it remains unclear where in the brain they originate.

We are hopeful. Lucas is still doing so wonderfully in spite of the increase in seizures and we rejoice in that. He is still working hard at standing and sitting and is doing better with his looking at us and other things. He is also chattering up a bunch, Ds, Bs, Ns, Ms, Rs and some Ls too are coloring his speech. Last week, it began to seem that he is connecting the fact that "Dada" is Marc. Very exciting! He also, just this morning, finally, cut through his top right gum line with his first molar. His gums have been swollen for months, all four, but finally we got one through!

That's about it for Lucas for now, but I wanted to invite you all to rejoice with us also that my cousin's son Cooper has come home! He is doing really well and his family is glad to finally have him where they have wanted him for so long. THank you, thank you, thank you for all your prayers for them. I know they appreciate it and believe they make a difference.

I added a few more pics to close out September/October if you want to take a look. I pray you are all well and every day recognize the blessings that surround you, that you enjoy!

September / October 2008

Baby Cooper

I would like to announce that Lucas has a new cousin. Actually, he has a couple, one, a first cousin named Mae, (there are some pics of her up already) and two, a second or third or something once removed cousin, (Lucas' mom's cousin's son, if you can follow that). His name is Cooper and he was just delivered Monday. He had been hanging out in his mom's belly for a long time with no fluid cushion around him. They finally brought him out, wanting to delay as much as they felt safe so that he could continue his development. He is still a few weeks early, but impressive in size, 4lb 13oz and 18 1/2 inches long!

He is now in the NICU in the hospital in which he was born, an impressive facility I am told, and he is doing well, but he and his family could certainly use some prayer. About 2 hours after he was born, one of his lungs collapsed and he still has a chest tube in place. He is also still on a respirator and they are trying to keep his oxygen levels up, not as easy as it may seem.

I know that he will be all right, but I also know that not being able to hold and care for the child you have been longing for and dreaming about for so long in the way you are certain it would be right to do because it just isn't "right" yet, is agonizing for all involved.

I am without doubt that God carried us through those times (as He still does) and the prayers and love of all of you made eternal impressions in our lives and surely made a measurable difference. I ask that, if you feel so led, you would do the same for my cousin and his family, Scott and Anji and Cooper as well as the extended family of Cooper's grandparents, aunts and uncles.

Thanks again for loving us and through loving us, also loving others. :) I will be sure to keep you updated on sweet baby Cooper.

blessings.

Newest pics

I was playing guitar for Lucas while he was getting some exercise in his stander last week, and after a while he decided to try and help me play. Esther came over with the camera and snapped a few pics.

Also, I added some pics from our Bradley class reunion this past Sunday at Faust park. There were three other couples in our class, and it turns out that we were the only ones who weren't able to use the Bradley method (due to the necessary C section).

From September / October 2008

Still here

So, the seizures (sz) are still here, but it's difficult to determine exactly why - being that stopping the Klonopin can cause sz and also, I was in a wedding on the 4th and in the midst of all the chaos we missed a dose of meds for Lucas. This could effect the sz for a while too. As of this Tuesday, we have adjusted the dose of the Keppra once again. We are now spreading the dose a little more and he is getting 4mL in the morning, 3mL in the afternoon and 4mL in the evening. (He had been having two doses of 5 mL - one in the morning and one in the evening.) We will feel this out for two weeks and then check in again. We return to see Dr. Burris on the 29th and hope it to be a boring check up with no sz activity and, perhaps, a clear for scheduling surgery.

We'll keep you posted. In the mean time, enjoy the pics and video. I am off to put Lucas to bed.

Blessings!

ASCII art

I was playing around with this cool ASCII art generator, and I got a pretty good representation of Lucas. It looks way better when you bump up the width of the image and print it out, but I thought I'd post a smaller one anyway.

                                  `/dMMMMMMMMMMMMMMMMMMMMMMMNNMMMMMMNh/-                            
                                -dMMMMMMMMMMMMMMMMMMMMMMMMMMMNMMMMMMMNNdo                           
                              .sMMMMMMMMMMMMMMMMMMMMMMMMMNNMMMMMMMMMMMMMmo                          
                             -NMMMMNNMMMNMMMMMMMMMMNMMNhhmNMMMMMMMMMMMMMMN.                         
                           `+NMMMMMMMMMNMNNMMNNmNMhdNMd+syhMMMMMNmNMMMMMMMm/                        
                           hMNMMMNNNNNNmmdmMNNdyMd+hyMs//+mMMmNNmdNMMNMMMMMm:                       
                          -NMMMMMNNMMNmhysmNNd/sNo:hsNo+yNNddsysdhNNmNMMMMMMm:                      
                          sMMMMMMMMMmhso+smdy/:hy//yhmdmds/++///hdmmyNMMMMMMNy                      
                          yMMMMMMMMmyyo++Nds::odyyddhys/-:--:-::sdyhsNMMMMMMNy                      
                          yMMNNmMMNddssyNdo/:+mNhdmd/-.....--::+h+syyNNMMMMMMd.                     
                          yMMMNmMMMmdmNms+:/+hmdyyo-````.....-:++:sydmNMMMMMd/`                     
                          oMMMMmNNNNmhs+/////::--.````....---:/::/ohNMMMMMMNh-                      
                          :MMMMNNNNNdyso++///:--..```..--:/+++/////sNMMMMMMMh`                      
                           mMMMMMMNmdo/:-.....--..```........-:/+oo+yMMMMMMM-                       
                           /MMMMMNdy+:::/+/::--:-..`..-.--:::----/ossmMMMNMN                        
                            sMMMMho+::+syddhh+//:-----://dmmmho:--:/ohNNMMN/                        
                           `ydNMms++:-------:://::::::::://++///:-::/smMMNh/                        
                           -oohmhyo/:--------:/:--..-::------..----:/ohMNdys                        
                           .//+shy+:-........:::-...---:-`.......--:/ohmyss/                        
                            ++:/yo:-..`````.-:-::--:::-::.```.``..-:/ohs-/+`                        
                            :/-:s+:--.```...........`.........```..:/sho:/:                         
                            .o//y+/:-..............`...........`..-:+soo:/:                         
                            .s+/y+/:-----::-----------------..-..-:+ss:::/-                         
                            `s//s+:----::+osyhhhshyoshhhs+/:---.--/ooo:-::                          
                             :::s+:-....-oydyyyyhsyhyhmdhs+:-....-/+o+::-                           
                      ``....--..+o/-...--/ss+++++/+++oo++:-.....-:/+:..`                            
                    ./++oooooo++ydo/-..-::/+++//::+oo++/:-....--:+o/                                
                 `.:++++ooo+++++oNdo/---::::////:://:::--....-:+oo-                                 
           ``.-:/++++///++++++++oyNmy+/:---------------..---/oys-`                                  
     ` `...-:/++////::////+/+oyhddmNMdso/---..........-://oyhmd.                                    
  `-:-..```-++//////////////ohddddyshhhyyo/-----....-/+syhhhyh+`                                    
.::-...```-//o::///::://///////shdoo+/::/ohso+/////oyyys++/+syo+:.                                  
+.....```://++::::://///::::----/ys+:::----+syyhhhhs+:-:://+y+//++:.`                               
....`````///o+//:::::::::::::-----+ys/--------...-.---:::::+ddyo+++/+:`                             
`..`````.///:///////::::----------::oyy+:-.--------::::::::/ydddy+//+///-                           
`.``..``./:---://::::::/::::::-------:+syyo+:------:://++///+hdddh+//++///-                         
``..````./:+yyyo-`    ``..::///::::-----:/osyyyyyyyyyyys//+oydyo+::/+/++////-                       
.````````::/:/oo+-```````   `..-::::::-----::/://++oosyhyoyddo/+/::::+///://+-                      
ho-``.:+ooo+/:.``.+soosoo++:`   ```.--:::::--://:::::://osyyo//o/:--::////:::/-                     
dddo-+yo/::os+o:``:syyo--/+o/.``      .--::/:--:///::::://++//++:/:-::::///:::/.                    
ddd+-+-:--:o--://.`:so-.--:/+/```       .-::::---://::::::://///:+/-::::://+////.                   
:y+--:/oysyyyss++/::/yyssso++:``   `     `-:::::--:///:://:::::/://--:::----::/+/                   
:+:---:ysoyssooooos+/ody+:/oso+.           .::::::-:+/--///++/:/:/+:-:::.  ````.:.                  

Peek A Boo

Recently, Lucas has started to really enjoy playing peek a boo. Here's a video from last night.

Some new pics

Sorry we've been so lame about putting up media. Lucas has been super cute lately, so I want to try to get some video of him tonight that I can post up later.

For now, here are some pictures. As you can see, he's making some good progress with being able to stand up if we hold him.

September / October 2008

Total Annihilation

That's what we want.

Lucas' seizures are almost all gone, but he's still been having the slight deviation of his eyes to the left. It mostly only happens within about an hour of his next dose of Keppra, so instead of waiting 2 weeks to call the doctor, I called this past Tuesday. He said that he would like us to up the dose one more time so that we can be completely rid of the seizures. After 2 weeks in the total clear, we should be able to schedule his eye surgery which will also include the repair of the opening left after his hypospadias correction last November. Then we should have no more drifting eye and no more dribbling pee. :)

In physical therapy news, yesterday, Karey (his PT) said that he is progressing so well since starting in his stander that she wants us to start thinking about getting him into a walker. If the state has one then we can get it more quickly, but if we have to order it, it usually takes about 4-6 months before we will actually get it. It looks like we are going to skip the crawling and move right into walking, but we won't be complaining. :) I don't have any details about that, but it is an exciting something to look forward to enjoying and I figure we can go ahead and start celebrating early. :)

Pray you all are well and blessed!

Hopefully we'll be scheduling soon!

So, now that Lucas is feeling better (he's had an ear infection and snotty nose), we are seeing the wonderfulness of a lack of seizures!!!!! He came down with sickness right after his dose went up again and the seizures did not decrease, in severity they did, but in frequency, they actually increased a bit. This is very common with illness, however, so we waited to see how it would be once he started feeling better. He is still a little snotty and still on antibiotics, but he is hardly having any seizure activity at all!

He has had 1-4 tiny eye twitching only seizures (no head movement, no arm movement, no leg movement) every day since Monday, and on Wednesday, we finally got to cease the Klonapin (which we are supposed to give if he has multiple seizures or seizures lasting longer than 5 minutes)!! Dr. Burris said that if he keeps this up for the next two weeks, we can schedule his surgery!

Yeah God!! We are so thankful! I need to get him now; he just woke from a nap. I wanted to let you all know and say thank you again for your prayers, your faith, your love and your encouragement. We continue to press on and celebrate the life of our amazing gift, our sweet son Lucas. :)

Love and blessings to you all!

Sorry It's Been A While

So the seizures have continued and about 2 weeks ago we increased Lucas' dose of Keppra again. He is now taking 4mL twice a day. Tomorrow, we are supposed to call and check in with Dr. Burris (the neurologist) again. I am not sure what he will say though because Lucas has still be having seizures even with the dose increase. This, however, may be related to an ear infection and snotty nose that Lucas developed Wednesday night. When one is ill, it is often the case that seizure activity can increase.

He is doing a bit better today. (We started antibiotics on Friday.) His cough is much less frequent and severe and his snotty nose is not as snotty. He also is behaving more normally and not so ill-ish. I'll let you know what develops. (Hopefully it won't take me as long between updates as it has this time.)

In other exciting news, last week in physical therapy, Lucas sat by himself for about 20 seconds! He sat about 15 seconds another time in the same session. He is getting stronger and beginning to grow in his balance and coordination. He has also been doing great standing while we hold him under his arms and will even take steps as we support him.

I need to get some stuff done now, but I'll try to keep you posted when there's more to say.

Thank you all for your prayers and love and encouragement. Lucas, our amazing little prince, (and his parents) appreciate them more than we can say.

Trip to NYC

We took Lucas to NYC for a few days to hang out with family. On the trip, Lucas got to visit the beach for the first time. He loved playing in the sand, but the water was a bit too cold for him. He also got to eat some of Grandma Anna's gnocchi, which Esther mixed with peas and hamburger - and he seemed to like it a lot.

Lucas also had his last dose of Tegretol while we were there, and is now down to two medicines (Keppra and Klonopin) for seizure control. The trip threw his schedule off a bit, so he was having some high seizure counts during the first few days (15-20 per day), but his schedule has gotten back to normal over the past few days and he is having less seizures.

Trip to NY - August 2008

Anywhere

We have a running joke about how Lucas can fall asleep anywhere, doing anything. He has done it countless times in the middle of therapy. He does it eating on a regular basis. If he's tired, that's it; he's out. Tuesday, one of his therapist laughingly asked if he had yet fallen asleep in his stander. "No" was my answer. Then, Wednesday, my answer changed. I added a few pics of it and a few others. Hope you enjoy. :)

August 2008

Our Big Boy

Yesterday Lucas had his 15 month check up and the last round of 2 different shots. He weighed in at 22.2 pounds and measured 32 1/2 inches tall. He is almost as high as my hip. If he were standing next to me and I were to place my hand on his head, I would have to bend my arm. He's such a big boy!

He is still doing really well in his stander. He only fusses when we have him tilted back to put him in it and take him out of it. He is up to about 20-25 minutes now and doesn't seem to mind at all. We will continue increasing his time in it up to, probably, about an hour and a half a day, though the time will be divided. An hour and a half solid is way too long for a little guy to spend on his feet, even if he is a really big little guy. :)

We'll be adding some more pictures soon including some of Lucas in his stander with the tray attached so he can play with his toys while in it. (So far, he seems to prefer his mommy sitting with him and talking and sharing some yogurt to playing with his dinosaurs though. I think it's the fact that he is up so high and we can be so close, face-to-face, without straining or tilting our heads.)

Time to put him down for a nap and cut the grass!

Blessings!

Standing Tall

Today Lucas had his experience in his new stander. A stander is just what it sounds like it would be; it helps you stand, like a walker helps support you when walking. We will have him about 10-15 minutes/day in it and then, as he gets stronger, we will increase his time spent in it. He did about 10 minutes in it today and hardly complained. Here are a few pictures and a few others we've taken this month so far.

Blessings!

August 2008

One Up, Another Down

I talked to the neurologist's office again today and, after reporting that Lucas has had a definite decrease in seizures (sz) (this past Saturday we didn't see a single one!!!), I was instructed to again increase his Keppra, 2mL in the morning and 3mL in the evening for a week and then 3mL twice a day. Also, I was instructed to decrease his Tegretol (carbamazepine)- the one he's been taking since the sz first began last fall. We'll go down from 3mL three times a day to 2mL for a week, then 1mL three times a day for a week and then NO MORE TEGRETOL!!! I think after this next increase of Keppra, even before we finish the first week of only once daily increased dose, we will see no more seizures and that means NO MORE KLONIPIN!!! (the tab we give if he has more than one sz a day or a sz lasting longer than 5 minutes). We'll be down to only one med and that is super exciting to me. (It's the little things, you know?) :)

In other news, Lucas is getting over a cold. He had a super fever (I took it at 104.3 ferenheit at it's highest) and now that his fever is gone, he has a rash all over. It is a pretty common occurance, some reaction after a high fever breaks. It doesn't bother him at all; he's just got little red sposts on his torso, neck and upper arms. He still has some snot pouring out of his head too, but not near as much as a few days ago. This boy is such a trooper.

Anyway, groceries don't select, purchase and transport to my house on their own, so I'm off. Thank you for your prayers. All the glory is God's. We know that Lucas is never out of His sight, thoughts or delight. :)

Blessings!

meds up

So, after checking in with the neurologist, the latest is that we are upping the evening dose for a week and then the morning dose also. At the end of those two weeks, we'll check in again. Hopefully, however, there will be no more increases, but rather we will get off the Klonopin and the Tegretol and be on only one medication.

We'll let you know how it goes. :)

Blessings!

July pictures

There isn't much to report now. The sweaty little boy we know and love has returned, but there are still seizures. Not a whole lot, but still seizures. Today is the last day that he will take the TopaMax. We will call Dr. Burris Tomorrow or Tuesday and will likely increase the Keppra. We're at 200 mg/day now and the goal is to be between 300 and 600mg/day. Hopefully, at 300mg/day, we'll be good and there will be no need to go higher. His sleep schedule has been a bit of a mess, but it's unclear if that is related to the medication changes, as it began about the same time as the sweat disappeared, or if he is going through a growth/development change and his schedule is simply adjusting. I am hoping that things settle down before this coming Saturday though so he will be all right for the night while Marc and I go out to my high school reunion. As usual, we'll see. :)

July isn't quite over yet, so there may be more added to this month's photos, but for now, here's what we've got.

Blessings!

July 2008

No Sweat

Literally. No sweating. Apparently one of the possible side effects of the Topamax is decreased sweating. If it were only decreased, the situation wouldn't necessarily be so demanding, but no sweat is another story. Our story. Well, Lucas' story.

We don't usually go out and when we do, it's usually for longer drives with the AC blasting, so I didn't notice until a few days ago when we had a series of shorter trips in and out of a hot car which didn't have time to cool that Lucas was getting very flushed and very hot and not sweating. This is a sweaty boy we have too, a hairy, handsome, sweaty boy. I checked my drug book and sure enough, "decreased sweating" is a listed possible side effect. Once I realized this, I began thinking about how I hadn't noticed him sweating when I nursed him or while snuggling in sleep, both times that increased heat and sweating usually occur.

Sweating is a normal response to an increase in body temperature. It is the body's way of cooling down. If the body cannot release the heat and be cooled by the air on the damp skin, the heat will continue to rise to potentially very dangerous levels. We would prefer to avoid this. :)

When we saw Dr Burris yesterday, I mentioned this first thing and he said, "Well, that's the end of TopaMax." He said that such side effects, though not generally common, can occur more commonly in the "little guys". So, now we are decreasing his dose of TopaMax and trying a new medication, Keppra. For the next two weeks, we will be weaning off the one and onto the other, totalling four medications taken daily. The Keppra is also a newer drug and does not have any major organ damaging side effects nor does it have any drug-drug reactions. It is a liquid and doesn't taste bad. (Yes, I taste everything.) He doesn't seem to mind it at all.

The past two nights, he has gotten better sleep, last night better than the night before, only waking once. (Yeah! Back to normal, I hope!) He did not nap well yesterday, but hopefully today that will also be better and with the med change, the sleep improved and the good Lord who loves us more than we could ever deserve, we'll triumph over these seizures yet!

Thanks for your prayers, love and encouragement!

Up, Up and Away!

Sorry I didn't get this up sooner. I am hardly online. :/

Anyway, here's the latest:

We increased Lucas' evening dose from 25mg to 50mg as of Monday. This coming Monday we will increase his morning dose as well. We also, this coming Monday, have an appointment with Dr. Burris. So far, it seems like the medication is helping to improve matters, but if Lucas' sleep schedule is disturbed, the seizures increase. It is a more severe observation the more consecutively the schedule is upset. Consequently, however, the opposite is also true; with consecutive excellence in sleep, there is a dramatic drop in seizure activity.

This is helpful to know and we are hopeful that a combination of the medication and keeping him well rested (along with the amazing grace of God!), the seizures will cease to be a part of our lives. The only difficult matter is this: Lucas takes a long nap in the middle of the day (the middle of our day, that is), around 11 or 12 until around 2 or 3, give or take a half hour. Without disturbing his sleep, it is near impossible for me to get out of the house for errands, so I am slack in that department temporarily, a slight annoyance.

Otherwise, all is well. I need to get some dinner in him now, as it is already 10 past when I should have begun his meal!

Blessings!

getting better

Sorry I haven't posted in a while. I will likely post quickly again tomorrow after talking with the neurologist again. For now, Lucas is improving. His seizures have dropped from about 45 a day to about 15 or 20. This is greatly effected by the amount of sleep he receives. For example, his afternoon nap was greatly disturbed and largely lost 2 days in a row. The third day, though his sleep was back to normal, he had 38 seizures. After 2 days of good sleep, he had only 9. Today his sleep was not great and he has had 22 and hopefully that will be it as he is about to go to sleep.

I am off to do that. I'll post again tomorrow or the next day, I think. For now, here are some pictures from June.

Blessings!

June 2008

On Again, Off Again

My apologies for not posting sooner. I had intended to get this up by Tuesday, but here it is Thursday and, well, I guess two days late isn't too bad.

Anyway...

The update is thus: We have canceled the surgery(ies) for the strabismus (lazy eye) correction and hypospadias follow-up. We will re-schedule after the seizures (sz) are satisfactorily gone. As for the treatment of the sz, we began Monday night with a whole 25mg tab of the Topamax and will continue for ten full days doing a half tab in the morning and full tab in the evening. After that, we will increase to a full tab in both the am and pm for almost two weeks (because the 10 day mark falls on a weekend) before following up with Dr. Burris. So far, as best I can tell, Lucas is sleeping a bit more, but also, today seems to have had noticeably fewer sz! I did not witness any when we were up for his middle of the night meds and feeding and so far this morning (since just before 0600), he has not had an overwhelming slew of sz. ( I think he's had about 12 or 13 so far today, when by this time lately he'd already had over 20, maybe even 30.)

We'll continue to keep track of how many he has, but I feel really really hopeful that this dose increase is going to work and we won't have to mess with any other drugs (or their nasty side effects)! I'll keep you posted again soon.

Thank you for your prayers and support. I feel that our recent trials are so trivial compared to those of so many others in our region of late. All those effected by the flooding and the tornado that swept through the Boy Scout camp, our prayers are with you too.

Blessings to you all.
The DeSantis Fam

Still in waiting, Not much improved

I was reading to Lucas this morning, lately I do some Psalms, some Proverbs and a little Romans. Proverbs 16:9 has been underlined/highlighted in my Bible for years and has been super apropos in my life as well, but this morning it once again was ringing in my heart.

"In his heart a man plans his course, but the Lord determines his steps." (NIV)

Today is our 14th day on the Topamax, a week on the full dose. We are still observing between 25-45 seizures a day. I am unsure if the variance in the numbers is due to a change in the number had, or a change in the amount we witness. Either way, it is still not much improved nor consistently improved. I am awaiting a call back from the neurologist, but I am near positive we will, once again, cancel Lucas' surgery. I was talking with a friend the other day and she said, "It sounds to me like he just really doesn't want that surgery." It would seem that way. Though we would prefer a different method of intervention to the appearance of seizures method. :)

I am not certain if we will continue on the Topamax and continue to hope it works or if Dr. Burris will want to switch to Depacote (which has some possible nasty side effects we'd rather not explore). I got the feeling from chatting with his nurse that he will likely want to keep Lucas on the Topamax for a while longer. It makes sense to me; he's only had a week of full dose. That isn't much of a trial.

I will likely post again tomorrow after getting the official word and let you all know. Thanks again for your prayers and support. We know that though this may not have been the way we'd have chosen to walk this out, God's got a much better view of the whole journey and His choices are based in much more wisdom than ours would be and we trust Him.

Blessings and thanks.

Just a little update

Just wanted to let you all know that nothing much has changed. We are trying to keep track of how many seizures occur throughout the day, but I think it's a fairly inaccurate account. We've had days in which we witnessed 25 and days in which we witnessed 40. I think more likely he's having about 50; we just don't catch them all. Today is the first day of taking a full dose of the new medication, Topamax. Dr. Burris said that we should be able to notice a change by the third day of the full dose, so we are still hopeful. I keep thinking that I am seeing less, but when I add up the daily totals, there are still high numbers.

I'll let you know as the days pass. One week from today will be the deciding day, regarding the success of the Topamax and the clear or cancellation of surgery.

Thanks for your prayers; we would be at a total loss without God.

Not Exactly According to Plan

Things worked out yesterday, but they didn't go quite as I had hoped or expected. Lucas did not sleep for the EEG nor did he have a seizure, but the technician, a very nice woman with beautiful silvery-white curls and a fun-loving gentility, said that she got some good results. As soon as the test was complete and she began removing the gooey leads, he had two seizures. She didn't realize until I said something but they had passed before she could see them happening.

We then met with the neurologist, Dr. Burris. He also did not witness any seizures. (I sometimes feel like I am the only one who can see them, like I've been given a supernatural seizure-detecting gift, or perhaps I am being tortured by my mind and require some intense psychotherapy! - Just kidding. Marc and my dad have seen them too; I am not alone in my madness.)

Dr. Burris explained that there are (for simplicity and appropriate application in this case) two kinds of seizures: prolonged and brief. When Lucas first had seizures they were very lengthy, the first lasting about 1 1/2 hours. The last round of seizures, we have now opted to consider clusters of brief seizures and this round, individual brief seizures.

The medication that Lucas takes to prevent seizures targets the prolonged type of seizures. We are now beginning a trial period of a new medication that should treat both the short and the long. It is called Topamax. We will give 1/2 dose for one week and then full dose the next. We will continue giving his Tegretol (regular med he's been taking since the beginning of the seizures) three times a day as well as Klonopin twice a day (we give this as long as he is having more than one seizure a day). If at the end of the 2 week trial period, we have not seen excellent results, we will cancel his surgery and consider a new trial of a different medication. If there are good results, we will begin to wean off of the Tegretol and rely solely on the Topamax.

We are, of course, hopeful that this medicine will be effective and that we will be able to press on as planned. We know that God knows best and if we are again to postpone his surgery then that is all right with us. We want the best for him and don't want to rush into anything. As much as we may distaste our frequent state of limbo we are becoming impressively flexible, not quite up to par as the famous Chinese Acrobats, but if we continue as we have, I think we'll get there and you can see us touring in a city near you. :)

Please continue to pray for our sweet prince. One concern is ensuring he actually consumes the medicine as it is in tablet form and must be crushed and added to food. As is obvious in his pictures, much of his meal typically ends up on his bib (and face and hair and tray and mommy) instead of in his tummy. His first dose last night went over well. We know and trust it will work out. It always does. :)

Thanks and blessings to you all. We'll keep you posted!

EEGs Over Easy

Hopefully, anyway. That's how I like them. I would prefer to not have them at all, but if we have to, then that's the way to go.

I noticed last Wednesday, but wasn't sure I was noticing anything. Thursday I was sure I saw something, but no one else (even the pediatrician while examining him for his 12 month check) seemed to notice. He was super irritable, more than he's ever been Thursday and Friday from the shots he got at the doctor's office. When he had ibuprofen in his system, I didn't seem to notice so much, so I continued to brush it off. Over the weekend, however I noticed more and finally said something to Marc to see if he could spot anything. Sure enough, he did. Seizures.

I called the neurologist and explained what we are witnessing: super brief flashes of uncontrolled movement. A quick turn of the head to the left, maybe a right leg or arm movement to coincide, only lasting less than 4 seconds. Almost before there's a sign to look, there's nothing to see.

It mostly seems to occur after waking, immediately and up to 30 minutes after. There have been, however, some that happen at other, random points, while crying, playing, maybe tired, but having been awake for some time. Dr. Burris, Lucas' neurologist thinks that he might be having a new kind of seizure. If it is what he is thinking it might be, then the medication Lucas takes to prevent seizures needs to be changed because it is ineffective.

Monday, the 2nd of June, we will go in to Dr. Burris' office for an EEG. After attaching all the sensors, Lucas will need to sleep for a while. Then he will be awakened and likely stimulated with flashing lights, strobe style. When the EEG is complete, we will meet with Dr. Burris and discuss the results and where to go from here.

Please join us in praying for the test to go over easy, for Lucas' sleeping/napping to work well with what is needed for the test. Also, Lucas' hypospadias follow up/strabismus (lazy eye) corrective surgery is scheduled for June 27th. The last time we had a surgery scheduled for his eyes, it was canceled by the anesthesiologist because he was having "uncontrolled" seizures. If we do not get things "under control" by June 26th, the surgery will likely be canceled again. We would really prefer this not be the case. We have 2 different doctors' schedules to coordinate for the surgery so Lucas only has to be put under once, and we feel like this is a good time.

God's will be done. We know He has Lucas' best interest in mind and we trust Him, but He still says to ask. As little children without hesitation ask their daddy for things, so are we to ask of Him.

We'll keep you posted.
Blessings.

On to the next

The birthday bash is past. There is only one more swim class left. The one year appointments are almost complete. May is coming to a close. It's been a busy month. Lots of doctors, all say Lucas is doing marvelously (as if that's news to us), beloved out of town visitors, swimming every week, a couple of shots, and a few teeth on the brink of break through. We've still got about 9 more days in the month and already I'm exhausted just thinking of all Lucas has already endured in May. He's such a trooper. He takes it mostly joyfully too; some thing easier, like having fun with family, and other things like the most courageous boy I know such as the two shots he got this morning.

Not sure what all next month month will hold other than surgery on the 27th. Hopefully aside from that the month will be rather mundane and relaxing. Possibly some outdoor water fun? We'll see and share the photos with you.

We've updated the May pictures and will likely add more since the combination of several days and camera happy parents adds up to lots of Lucas photos. :) Hope you enjoy!

May 2008

Happy Birthday Lucas!

Lucas has been having a great day today! Esther said that he actually seemed to have fun at swim class, and he's been in a great mood for most of the day.

It's been amazing for Esther and I to look back over the pictures we've taken over the last year. Lucas has changed so much

May 14 2007


June 2007


July 2007


August 2007


September 2007


October 2007


November 2007


December 2007


January 2008


February 2008


March 2008


April 2008


May 14 2008


And here is the latest set of pictures:

May 2008

Happy Mother's Day!

Sorry it's been so long since the last post. Lucas has been a bit under the weather recently. He just had a bit of a stuffy nose, some sneezing and an occasional cough. No fever though. We think it might have been allergy related. Marc was having the same symptoms and his were because of allergies. Then it rained some more and whatever it was got washed away and they are now both fine. :)

Lucas also got his hair cut last week. He was awake and squirming and the overall look is not what I was planning, but it's not the worst and it will grow. It kind of looks like he got a hold of the scissors and then I tried to fix it. We'll get some pictures up next week and show off his new do. We should have lots to post because Wednesday is his birthday and that demands many many photos.

That's right, a year has already passed since we were first able to hold him in our arms. In so many ways it seems like it's been decades, not months, but in other ways it seems like he just took his first breath yesterday. The time has flown by, though we also have a difficult time remembering life without him. Not that we were incomplete without him and not that we would be overflowing when we have more kids, ,but we feel, pardon the hokey Jerry Maguire-ness, that he completes us in a sense. I'm sure there are those out there who understand what I mean. I imagine we'll experience it again with every child.

This week holds a lot of busyness as we prepare for Lucas' birthday party this coming weekend. Marc's family is flying in from NY and my dad is driving up from Mexico to join us locals in celebrating his life. There is much cleaning and planning and shopping that we will do this week in addition to therapy and swim class. (We have 3 more weeks to hopefully enjoy it. This past week, he slept for about 25 of the 30 minute class and the water was the coldest it's been. He's a pretty impressive kid!)

If I get a chance, I might put a few pics up before the party, just of our little intimate family celebration on his actual birthday. We'll see what we get to.

For now, I am off to bed and hope that all you mothers and fathers, sons and daughters (that should cover everyone) had a wonderful week and fabulous mother's day!

Splish, Splash and Sleep

So, three weeks into our aquatics class and Lucas is still not happy about being there. Week one he cried through most all of it; week two he cried through about half and slept, yes fell asleep in the water, for the last few minutes; week three he fussed through about 3/4 of the time. The first two weeks he missed his morning nap. The third week, I think his teeth were bothering him and I hadn't given him any thing to soothe them. Next week, hopefully we'll get the nap and not have the teething issue. His gums are pretty swollen and look like there are at least 3, maybe 4 or 5 teeth thinking about popping up. I don't think I'd be very comfortable either.

Marc's cousin Alex is recovering well. He is having some pain and all of his symptoms such as blurred vision have yet to dissipate, but it has only been a week and that is to be expected.

Marc's place of employment is hosting the President of the US today. Yep, George W Bush is coming to St. Louis and Marc will be one of about 250 people to share the room with him. Marc was recruited to be a volunteer assisting with checking in the local press. Regardless of how one may feel personally about the presidency, I still think it's pretty cool, surreal and exciting.

I'm planning to cut Lucas' hair again. I've trimmed it up in the back before, but now it needs some trimming on top and on the sides as well.. We'll see how it goes and if anyone will notice in the pictures to come. :)

Blessings!

All is well

I love that I can share that everyone is doing great. Lucas remains well and is getting stronger and more amazing every day. His joy is overwhelming. I love it. I know I've said it before, but seriously, I have the greatest job in the world. It would be impossible, I think, to begrudge even a single moment in my days spent with my precious little love.

I wanted to share that Marc's cousin Alex had his brain surgery today and all went well. I don't know the specifics of his recovery, but as he came out of anesthesia, he was feeling well. I'll update later his continued improvement.

Also, You may remember (if you've read through all this blog) the story of little Abigail Grace Steer, the sweet baby girl whose room was down the hall from Lucas that first week at St. Louis Children's Hospital. She had a super-aggressive brain tumor and was sent home to die the same day Lucas was discharged home to heal. She has just stopped chemo and is doing fantastically! God is good! Feel free to check in on her website if you're interested. We greatly related with her family and their story is quite similar to ours. As much as it was a struggle for us to be at the hospital with our babies suffering, there was also a great comfort that we could take in each other.

Praying that you also are all well as you read this. Thank you for caring about our sweet little champion.

new pics

I just posted some new pics from this month and added a few more to the March 2008 album as well if y'all want to take a look!

April 2008

All shook up

Lucas got to experience his first earthquake this morning. He woke early, seemingly in expectation, and was sure to be super loud so both myself and Marc would be awake for the event as well. It was a 5.4 hitting in southern Illinois. It gently shook our house for a few seconds and then it was gone. How very exciting, huh!?!

Lucas has also begun life as a Kipper. I would argue that he doesn't fit the definition according to Wikipedia, but at the YMCA, its a child 9-12 months old who participates in an intro to swimming and aquatics class. We are enrolled in a 7 week class and had our first this past Wednesday. I would not say that he loved it, even that he liked it, but he tolerated it well. Hopefully, he will be like the countless others who, by 4 weeks in, loves and looks forward to the 30 minute class. It seems that he will only have one classmate, a little girl just a week younger than him. She is adorable and her mom seems pretty great too. She is a pediatric nurse at Cardinal Glennon, the other major local children's hospital here in St. Louis.

Okay, right this minute, we just had an after shook, or maybe another quake, not sure which, but the whole house just shook again. Wow.

Lucas is doing great otherwise. I have a goal set that he will be sitting up on his own by his 1st birthday next month. We'll see if we can achieve it. He's getting stronger every day, and more vocal (if that even seems possible). He is closer to forming words and moving his mouth as though what he is saying should make sense to the rest of us. He has also begun discovering the joys of sticking out his tongue in different ways. Sometimes he looks like a snake tasting the air, sometimes like he's trying to make a chimpanzee face and sometimes he's just using for extra leverage in the spit spraying arena. I also predict he'll cut his 5th tooth by the end of the day tomorrow, if not today.

That's a glimpse into our exciting lives. I'm going to go play with him now, but hopefully will get some more pictures up later today so you can all see our handsome growing boy. :)

The History Channel

Marc and I were watching a special on the History Channel about Easter the other night that I found interesting. The program was based on an attempt to either verify or falsify the claim that Jesus lived, was crucified, buried and rose from the dead. Apparently, the experts on either side of Christianity, which is based almost entirely on the belief that this is truth, do not argue that Jesus lived, that He was crucified, that He was buried or that He went missing from the tomb where He was buried. The question is, "What became of His body?"

His followers from the beginning claim that he was resurrected from the dead and walked and talked and even ate among them. On the other side, the strongest theory is that the body was stolen and that His followers were hallucinating due to grief. Sure, maybe they saw Him, but it was because they were all (all in the same room at the same time, as well as on other occasions with two or three together) so stricken with heart ache that they could see and feel and question him, simultaneously in one joined hallucination. Those experts who didn't necessarily believe the hallucination theory but also do not believe that Jesus was and is who He claimed to be, the Son of God, the Savior of all, God incarnate, still find it fascinating that these people who followed Jesus and were entirely destitute upon His death, fearful and hiding and utterly lost without a clue of direction suddenly all became incredibly bold in telling this story that seemed impossible, that God had walked among them in the form of man and all were welcome to surrender to His love and be changed forever. Even if they made it all up, unlike any other who had come and claimed to be the same as Jesus of Nazareth did, the Messiah, the movement never died out but instead has spread to this day.

We were not there and did not see such things with our own eyes, but we believe that this is Truth. This is the pivot point for all things in our life. This is why we believe in goodness, why we strive to be better, why we rejoice in the life of our son and have confidence that our lives serve great purpose. It is why we pray and the basis of how we pray: only unto God, asking in the name, for the sake of Jesus, and so that all who know us may know that anything good in life comes from our Maker and anything difficult is possible to overcome because He carries us through. There is no other, no Secret, no mantra.

I don't know what each of you reading this blog believes, but I want you to know what we believe because it is what fuels us, our joy, our strength, our purpose. There is nothing else worth while.

On that note, I would like to ask you to join us in prayer for Marc's cousin Alex who, it has recently been discovered, was born with a chiari malformation. His cerebellum (in the back part of the brain) is not properly contained and has slid back and is putting pressure on the brain stem where the automatic actions such as breathing and swallowing are controlled. He has had symptoms for years, but they were accredited to Lyme disease. He is 14 years old now and is preparing to have brain surgery to correct it, as best as possible. We believe that what is impossible for man to do is simple for God, so please pray with us that he would be completely restored to the high schooler he was made to be.

Thanks. Blessings from the DeSantis family, including a totally seizure free Lucas!

10 going on 15

So, though Lucas is only 10 1/2 months old now, he wears size 12 months. The way the onsies fit him suggest that he won't be comfortably fitted in them for too long. The next size up is 18 months, which is certainly too big. I therefore suggest a size 15 months so he doesn't have to show his shoulders to the world as he out grows the 12 months or be overtaken by the 18 months before he has fully come into them. I doubt that in the next 2-3 months this change in baby clothing will occur, so I imagine we will work through the awkward stages just like most other Americans since I don't intend to begin a new career as a seamstress.

In other news, Lucas has not had a seizure since last Thursday early, early morning!!!!!!!!!!!!!!!!!!!

We thank God for this super celebration and trust that they are gone for good. He has been sleeping well through the night and is back to only waking once. His napping is still off and hasn't been so thorough, but his body will sort it out and he'll get back to a regular daytime schedule again, I'm sure.

Thank you, thank you, thank you all for your prayers. God is so much more good than we can comprehend. He loves this little boy, His son and ours.

Now that he's doing better, I am off to the elliptical!
Blessings!

"Therapeutic abortion"

I watched an episode of Law & Order last night with a couple who had aborted their child after receiving a diagnosis of Down syndrome - only to find out that the baby was perfectly healthy after the fact. This got me wondering about how many people actually abort their children when given diagnoses like this. Being that we knew about Lucas' brain malformations midway through the pregnancy, we were made aware of our termination opportunity by two doctors that we met with. And if the midwest is the moral compass of the US like some people say, then I guess I shouldn't be surprised to know how rampant this behavior is in the rest of the country.

I found a very interesting article in the Washington Post that goes into detail about the reality of raising a child with a disability in California. The author, whose daughter has Down syndrome, describes an encounter with the director of an Ivy League ethics program who "believes that prospective parents have a moral obligation to undergo prenatal testing and to terminate their pregnancy to avoid bringing forth a child with a disability, because it was immoral to subject a child to the kind of suffering he or she would have to endure." According to the article, studies estimate that 80-90% of pregnancies with prenatal diagnoses of Down syndrome are aborted.

Reading this horrifies me, but I also find myself strangely comforted. Because if turning to abortion is becoming the new standard in keeping a perfect family, then I'm glad that God gave Lucas to us - and that we understand that God has a great purpose for his life.

Pictures for Easter

March 2008

Can you hear me now?

Lucas has excellent hearing and has from the womb. He used to find Marc's voice when Marc would read to him, pray for him and talk to him. Lucas would respond by pushing against me directly on the other side of his daddy's face. It was so sweet, truly cherished moments. We would look forward to our bedtime routine which included these meetings of Father and Son. Lucas always had spot on accuracy though it sometimes took a few minutes to find his daddy.

The same is still true today. He knows Marc's voice and loves to hear him reading, praying, talking, singing, being goofy; he knows my voice too. Even now, with an ear infection, that's right, an ear infection, his hearing is impeccable.

I took Lucas in to the pediatrician's office yesterday afternoon and that was what we were told. He began his first of five days on antibiotics yesterday as well. I have still been sucking some rather unsavory shades of greenish-yellow from his cute little nose with nostrils reddened from all the attention. He slept fairly well last night in spite of the persistence of snot. He only woke twice, had some major saline and sucking times, nursed, and went back to sleep pretty well. I am also smothering myself in vapo so that he can get some good whiffs without having the tingles of it on his skin.

He ended up only having 2 sz yesterday and, so far, one today. I"m confident we will get back to fully resting and having No More Seizures!

Hope you all have a wonderful Easter!

Snot Sucker

It's about midnight and Lucas is trying to get back to sleep. He woke about 20 minutes ago and had a seizure. That makes 4 for the day, the most in four days. He then began snorting due to a stuffy nose. I sucked some snot out of his head, but he is still not breathing normally. I am frustrated. To suck more snot will help him breathe which will allow him to sleep, but also keeps him from sleeping while doing it. To not suck snot keeps him from breathing normally which also keeps him from sleeping normally. I can hear his stuffy breathing from here, across the hall.

We were just getting close to back on track; to start all over...

Thanks for your prayers. Please keep them up that Lucas' stuffiness would go away and stay away.
Back to bed now. I'll keep you posted.

Seizure Etiology

Lucas has continued to have seizures (sz) every day. He was having at least 4 a day. It then was up to every time he woke, up to 8 in a day. Marc found a website (epilepsy.com) that offered some helpful information about sz related to sleep. There is one article that states that sleep deprivation can be a major factor in recurrent sz. What it describes is what we have been seeing in Lucas.

I am pretty sure it began with a stuffy nose that was pretty fierce and persistent. It lasted about 3 weeks. He would be awakened by a need to breathe. This greatly disrupted his sleep cycle and, I believe, was the beginning of the vicious cycle of sleep disturbances and seizures. Basically, when the circadian rhythm is thrown off, the atmosphere is ripe for seizure development; the more seizures one has, the more it throws the rhythm.

We invite you to check the website for yourselves if you are interested. The articles are well written, informative and easily comprehensible. There are a few videos that are good for us visual learners too.

The treatment for this is simply to try to get back into the sleep schedule that existed before the stuffy nose began. This translates into me sitting very still while holding Lucas and soothing him back into sleep when he begins to stir. So far, we have seen vast improvements. Now, typically, he is having 2 sz a day compared to 6-8 a week ago. The neurologist's office recommends to keep up what we have been doing and hopefully within another 2 weeks, we will be back to normal.

Thank you all for your prayers. God is good and takes good care of us and we are thankful.

Lucas is calling me now. I hope this information helps those of you curious about what exactly happens when Lucas has a sz.

Blessings!

Video: Lucas with his head up

Within Normal Limits

When Lucas was born, his head was pretty ginormous. Even after about 2 1/2 inches were taken off when Dr. Leonard placed his shunt and allowed large amounts of excess fluid to drain, he was still "off the chart" as far as "normal" head circumference is considered. That all has changed though.

Today he had his 9 month check up (though he'll be 10 months on Friday), and his head circumference is now considered to be in the 90-100th percentile. Still very large, but on the chart. That doesn't really mean anything medically, but I think it's exciting just the same. :)

In other news, I heard back from the neurologist's office yesterday and they said to go ahead and increase his 3rd dose of Tegretol as well, so now all three of his daily doses are up by 1/2mL. We are supposed to follow up with them in 2 weeks (or call earlier if we have any concerns). We are to continue using the Klonopin as needed (if he has a seizure lasting longer than 5 minutes or more than one in a day). We are back on the Klonopin now and will be through tomorrow afternoon. He has had 4 seizures today, 2 yesterday, 4 the day before that. Hopefully, his body will adjust to the new dosing and the seizures will stop. They only happen when he wakes up, not every time he wakes, but something about waking allows them to happen. I still haven't gotten back to the elliptical in the basement because I don't want to leave him, but I can get in some stretching and ab work in the living room so I don't feel like a total physical wastoid. :)

Now, he is sleepy and hungry and that means I'm on full duty. His Grandpa Mike arrives from Mexico tomorrow for a couple weeks, so we are looking forward to that. We'll try to get some more pictures up soon, maybe some video too, because he is the cutest boy in the world and everyone needs to keep up with his ravishing good looks.

Blessings and love to you all. Thanks for your prayers; please keep them up. God tells us to ask.
Esther (for Marc and Lucas)

S'more

I took Lucas in to a lab yesterday to get his blood drawn to check his Tegretol level so that the neurologist can know how to adjust his meds. He was so brave, as always. He was asleep and awoke to feel the tourniquet tightening around his little arm. I think he hates that and the being held still more than the actual stick. He really hates being held still.

He had two more seizures yesterday morning so we started the Klonopin again. He had another seizure this morning too. I'll be calling the neurologist later today to see if they got the results of the blood work and to talk to them about any changes they may want us to make since he is still having so many seizures.

He is such a sweet little love. When he is having a seizure, he will often make sad whining sounds as though to say, "Please make this stop." As soon as it is over, he is a squealing joyful boy again and typically a hungry one at that. :P It is difficult enough to see him having these uncontrolled events, but to think that he is suffering at all in the process is heart wrenching, though I think it is more out of frustration that he is kept from doing what he wants to do.

He was chewing on fingers this morning and gagged himself bad enough to puke a little (which one might think he'd stop doing after he's done it a few times; the fingers can only go back so far! :P) and so now I'm off to bathe him.

Please, keep praying, for wisdom for the doctor about medication changes and especially, for Lucas to be healed.

Thanks for your love.

A little here, a little there, but none right now

So, since last I wrote there have been some new "developments". Here's an attempted informative update:

We ended up giving Lucas 4 doses over 2 days of a drug called Klonopin for his last round of sz (seizure) and adjusted his daily medication, Tegretol, by increasing one of his three daily doses. Everything was fine and fabulous. He had one last sz lasting about 1 minute early Friday morning, but was great all through the weekend. Then, Monday morning, around 1am, he had another sz. It was about 4-5 minutes and was much more subtle than the last sz, but a sz it was. He was fine all day Monday, but then Tuesday, he had another sz, again around 1am and again subtle. (I'm talking I had to look really hard to be sure that he was actually having these sz.) After that sz Tuesday morning, I gave a Klonopin tablet. (It dissolves in his mouth.) It was technically about 24 hours and we were instructed to give it only if the sz lasted longer than 5 minutes or if there was more than one within 24 hours, but I thought, being right on the border of a day, I'd go ahead with it. This means that I must then follow through with three other doses spaced every 12 hours. We also increased a second of his three daily doses of the Tegretol.

-Are you all able to follow me when I write about this stuff? I hope so. I always make Marc read what I write to get a layman's perspective. Irregardless... (yes, I know that is not a real word.)

Today, I got a call from the same day Sx (surgery) nurse to get some brief physical info about Lucas for his upcoming Sx. This information includes what medications he is currently taking and therefore an explanation of the recent sz and medication adjustments. He is also taking an antibiotic to rid him of a stuffy nose he's had for about 2 weeks. (Interestingly, the pediatrician and the Neuro nurse both said that this could be a sinus infection and the source of the recent sz activity.) The nurse called me back to clarify his sz status a few minutes later and to get the name and number of his neurologist. She then called back again to tell me that his Sx has been canceled due to the anesthesiologist's discomfort with sedating him without his sz status being under control even though his neurologist gave the all clear.

There are no dates available for rescheduling the Sx that would allow enough recovery time for his eyes before Lucas' hypospadias follow-up Sx to determine if he needs a second eye Sx which would be performed while he is in for the hypospadias Sx. So, now we are planning to have his eye Sx at the same time as the hypospadias follow-up Sx and if he needs any additional eye Sx, it will have to be after that.

I have to admit that I was quite thrown and a bit upset when I received this information. We wanted to go for an earlier Sx for the statistical increase in function and recovery. I had it in my mind that this was going to happen, had processed all rational and irrational fears and hesitations and was settled. Then the dust was kicked in my face because of some person who won't even talk to me or Lucas' neurologist.

After talking to Marc and to God for a while, I am much more calm now. We have been praying for months about this Sx and whether or not we should do it and if it should be done at this time. We have been praying that if we are not to put Lucas on the operating table this Friday that we would be clearly shown that so that we can cancel. Apparently, we are not supposed to follow through and instead of struggling to know if we are hearing God clearly, God shut the door for us so we don't have an opportunity to hear or act wrong. For this, we are eternally thankful. God only knows why this is not the time, but we trust His decisions. Perhaps something would go wrong or perhaps Lucas will only need one operation on his eyes and he has been saved from having to go through the whole Sx thing more than necessary. Perhaps, God will heal him completely on His own, without the help of surgeons.

Whatever the "perhaps", the Sx is off. We will continue patching his right eye for an hour daily to strengthen the brain's response to the left eye's input. We still have to get Lucas' blood drawn for his Tegretol level so that the neurologist will know how, more exactly, to adjust his daily medication.

That's the latest. Thanks for tolerating my garble. I assure you it's a lot more difficult to decipher the way I say/write it in my head. Anything you don't understand, you can ask, or in this day and age, Google. :) Thanks, more than anything, for your prayers. God is good and faithful and watching out for us, for you too. :)

Blessings and love and squeals of joy (that's from Lucas),
Esther and Marc

Not Afraid of Needles

That's what it says on one of my blood donor t-shirts. I sometimes laugh to myself when I wear it, thinking that I should get a t-shirt for Marc that states the opposite. :) I would not say that Lucas has any irrational fear of needles at this point in his life, but I am certain he does not like them at all, and he has had more than enough interaction with them to make such a judgment.

Every few months, since he first began having seizures (sz), his neurologist wants to check the amount of the antiseizure medication in his blood to make sure that his dose is accurate. We like to avoid as many traumatic experiences as possible for our sweet boy, so we had his last blood draw done while he was under general anesthesia for his hypospadias Sx and plan to have his levels drawn again next Friday while he's under for his eye Sx. As Lucas grows, more medication is required to suppress the sz. I was expecting an increase in his dose, but was not expecting that I would begin increasing it before he has even had the blood work done.

Unfortunately, things do not always work the way I would prefer them to work, and as of tomorrow's early morning dose, Lucas will begin a slight increase in his medication. This is due to a return of sz activity. I noticed Wednesday morning around 330 when I was giving Lucas his medication that he was kicking and lifting his right arm. I had the thought that I have noticed him doing this before, but something registered that I should pay closer attention. I did and noticed that the motion was repetitive and seemed uncontrolled. I timed the sz to be about 3 minutes and made a mental note to watch him more closely.

The next morning the same thing happened, not at meds time, and I noted that in addition to the arm/leg movement he was also swallowing, a fact unnoticed while giving him liquid medication that must be swallowed. That sz lasted about 3-4 minutes. There was another sz yesterday afternoon about 5 minutes long. This morning there was another about 6 minutes and again, just before sitting down to write this, he had another one lasting about 2 minutes. When a sz lasts longer than 5 minutes or he has more than one in a day, there is another medication we have been given to administer. He had one dose yesterday and another this morning. I will likely give another dose this evening, but must wait until 12 hours after the earlier dose.

I know this seems like some scary stuff, but I am pretty calm. I am not willing to go in the basement to exercise or shower unless someone is here to watch Lucas, but I will be again once his dose is settled and the sz activity stops. Lucas is still his joyful self and, as with his last round of sz, he is alert throughout the sz, making it easier for me to miss what was happening, but it is a good sign letting us know that only a tiny area of the brain is affected.

We will be updating more in the next week, about the sz and about when he will go in for Sx next Friday. We thank you all for your prayers and know that this sweet child is a mighty champion and an example to us all, to be strong, to press on and above all to be joyful and savor every moment. We are forever thankful for his life and are excited to see in what ways God will use him, as we know that God has great purposes for his life. Even as he is yet so young, I know he has touched the lives of many many people and in some of the best ways possible. He certainly inspires us to be better, more faithful, more courageous.

He is ready for my full attention now, so until next time, thank you for your prayers. We know God is listening and that He wants us to cry out. We don't understand all His ways, but we trust Him and hope you do too.

Off to snuggle our little Champion.

2 more teeth?

It's been about 3 months since Lucas' first tooth popped out, and it looks like two more are trying to sneak their way in. Just a few more teeth and Lucas will be well on his way towards eating white pizza.

Here are some recent pics:

February 2008

Super Tuesday

I added some new pictures to the January album tonight. Lucas seems to have turned a corner recently with his head control, and is able to hold his head up for longer periods of time - so check out his pics and see how strong he is getting!

In other news, Lucas still is not willing to give his endorsement to any of the presidential candidates. Though he has been right there sleeping on the couch through most of the debates, he feels like it would be hard to endorse any one candidate when his parents can't even come to an agreement.

January 2008

Another surgery

So, after many questions, discussions and prayerful consideration, we have scheduled another surgery (Sx) for Lucas. It will be to correct the drifting of the left eye, though both eyes are actually adjusted in the procedure. We were told that since Lucas has CNS (central nervous system, ie his superhero brain) involvement, it is more likely that there will be subsequent Sx needed. This is due to the brain's response to the physical adjustment. It is very possible that there will be some resistance to the new positioning which would require additional adjusting. Research shows that earlier correction results in greater improvement, even if it is only the difference of a few months, due to the rapid development of the CNS. We, of course, prefer to have as few surgical procedures as possible for Lucas, as few experiences under general anesthesia, and are hopeful that we have chosen wisely. Having this Sx in March will allow for a second Sx, if needed, to be performed while under for his hypospadias follow up Sx which will liekly be the end of May/beginning of June. We will continue patching his right eye until the Sx and possibly after as well to motivate the brain to recognize the information that eye receives.

The primary effect of this correction is to allow for depth perception. The Sx and possible follow-up Sx as well as possible use of other tools should also help to prevent/eliminate double vision. We are also believing that his overall vision will be improved as it is true that one sees better with both eyes than with only one. It is only about a 45 minute procedure, but the anesthesia still takes a while to wear off so it will likely still be a long day. The typical recovery is speedy, and he should be ready for therapy again the following Tuesday.

We have some great pictures we've taken recently and will add them soon. For now, blessings and thanks for your love and prayers!

To the Left, On the Right

This past Monday we went to see Dr. Lueder, the ophthalmologist. You may or may not remember that Lucas had a vision test and we were told that he had "bilaterally diminished vision related to his brain malformation" and that we should follow up with the doctor in 6-9 months.

After his hypospadias correction, however, Lucas' vision seemed to decline. (Regression of abilities is a frequent occurance post-operatively, so it wasn't a big surprise.) The drifting of his Left eye (strabismus, aka "lazy eye") had seemed to increase as well.

He is recovering splendidly from his surgery in all regards, but there has been some greater delays in his visual tracking and the drifting. This is what prompted our Dr. visit even though we believe that there will be marked improvement with the addition of vision therapy.

So, Monday, we spent almost 3 hours waiting to see the doctor with the great satisfaction (please lay on the sarcasm to my voice in your minds as thick as you can) of about 6 minutes of his time. In that lengthy exam and conversation (keep slathering), We were questioned why we came back early (earlier than 6-9months), told that Lucas needs surgery on his left eye to decrease the drifting tendencies, that we should patch his right eye to increase the brain's response to visual stimulus from the left eye, given about 20 pages of information to read and told that we should "call Kathleen to schedule the surgery in 1-2 months and Kathy will give instructions on patching." As we were ushered out of his little exam room, my arms filled with papers and a fussy baby, he shook my hand and said that I should "feel free to call with any questions". Are you kidding? I have like a million questions and a few dozen more after looking at the paperwork. Then there's the online research Marc has found (because that's what he does :D) which has led to several more questions.

I have yet to call Dr. Lueder's office to attempt to reach him with a barrage of questions or to schedule a surgery for Lucas. We want to consult his vision therapist and Lucas' pediatrician before making any official decisions.

We petition you for prayer for wisdom in this matter and recovery of Lucas' sight, whether that be with or without surgery. Dr. Lueder is a highly recommended ophthalmologist, but we have reservations about any major decision made without, what I consider to be, a thorough examination, especially when that decision carries such possible tremendous side effects from retinal damage and blindness to multiple (usually at least 2) surgeries.

For now, we're patching the right eye and he seems to tolerate it fairly well (especially when the patch comes partially undone and he can peek out with his strong eye). We'll keep you posted with any updates, as they come.

Blessings to you all!

Sgt. Bosco "B.A." Baracus

Who doesn't love Mr. T? We do! While in NY, Lucas was blessed with a super-fabulous t-shirt with the great man saying, classically, "I pity the fool who don't read the Scripturist!" Our friends Mark and Liz who bought the shirt figured that it was supposed to say scriptures instead of scripturist, like some t-shirts seen in Chinatown might read Pespi instead of Pepsi. The woman who was selling the t-shirt said that was what she figured too. As it turns out, however, there is a blog called, believe it or not, the Scripturist, and the picture originated on their website.

Marc e-mailed them to ask about the t-shirts. Turns out, they had no idea, but wanted a picture of Lucas to share with their readers, so he's now (at least for a short while) their poster boy.

I don't know if we endorse everything the Scripturist has to say (we haven't read it all), but for now, we think they're great and Lucas will certainly keep wearing the shirt as long as it fits him and we'll be passing it down to his future siblings.

*Mark and Liz are the first two seen in the friends pictures from Christmas and Lucas can be seen in the t-shirt under the family pictures and, of course, on the Scripturist website.

Some more Christmas pictures

Christmas Vacation Part 2

Some pictures from New York

We've been having a great time in NYC for the past 2 weeks. Here are a few pictures of Lucas with family

Christmas Vacation