I should be making dinner now

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

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

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

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

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

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

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

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

Blessings!

Lucas don't you go and cut your hair

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



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