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