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...