God is our Physician

I began an update weeks ago, but never finished it. I know it's been a long time. Getting online just isn't a priority, but we do have things to share. :)

We saw Dr. Burris November 4th. We wanted to discuss his swollen glands, which we discovered is a side-effect of the Lamictal. Dr. Burris said that he wasn't worried about the swollen glands, but since we weren't having amazing results with the Lamictal, we should go ahead and ween him off the Lamictal and we will try something new.

The new drug is called Vimpat. It has been used in adults for many years (I think 15-20 years), but has only recently (1-2 years) been used in pediatric trials. There has supposedly been great success with it in pediatric patients. It is a drug similar to Keppra (a drug he took about three years ago) in that it doesn't have any interactions with other drugs or major organs. On this drug we need not worry about liver or kidney failure, which is nice. :)

The day that we saw Dr. Burris, we only saw three seizures. THREE SEIZURES!!!!!! We had not changed anything yet with his meds, but we only saw three seizures! We began decreasing the Lamictal the next day, but didn't begin the Vimpat for almost a week after that appointment. Since that day, we have only had three or four "bad" days. What we might consider a bad day in these recent weeks would be a pretty "normal" day just one week earlier. It is obvious that this is not in correlation with medications. It also bears no notable correlation to eating or sleeping habits as those have continued to be the way they've been for a long time. He has even had a cold through some of this time.

We are going to continue giving him the medications as prescribed, but our trust is in God. He is the one who designed Lucas is this fascinating way. He is the one who knows Lucas better than any one else ever could. He is the only one who can truly heal him, so in Him is our faith and our delight.

We hope and pray that you seek Him and welcome His healing in your lives too. There is a lot that goes on in this holiday season, but looking beyond the shopping and even the gift giving and time with loved ones, this is a season of miracles- the miracle of the lights that didn't go out, the miracle of God walking among His creation, the miracle of love that banishes fear and conquers death. May you celebrate what truly matters and enter not only the new year, but each day with the hope and joy that you can be a new creation, healed, transformed and set free by the miracle of His love.

Blessings to you all. We thank God for you all the time. You are blessings in our lives, for sure.

Here are some pictures from the past few months. I'm sure we'll have more after the holidays. :)

Fall 2011

Lately in the Life of Lucas

After surgery, Lucas did remarkably well. He is such a champ. :) Dr. Austin, the urologist, closed the little hole for good, it seems. Lucas is now all healed down there and we don't have to go back to Dr. Austin for a year and after that, not at all! We do really like Dr. Austin, but not enough to see him if we don't have to see him. :)

In other news, We are increasing Lucas' new seizure med- Lamictal- pretty rapidly now. We are going up in dose every week. It seems to be the trend that the seizures increase initially but then decrease right before we up the dose again. Today we increased up to 50mg twice a day. Next Monday we will call Dr. Burris' office (the neurologist) to see what he wants to do next.

Gauging the success of the meds may be a bit challenging currently due to the fact that Lucas has been sick pretty consistently for about five weeks, before we began increasing the meds more rapidly. He has had a cold with and without fever, a fever with no other symptoms, giantly swollen glands, an ear infection and a cough. His glands have been swollen for over three weeks. He did a round of amoxicillin while awaiting a strep culture which turned out to be negative. He is now taking a different antibiotic to fight an ear infection. (One of the side effects of which is giving him quite loose stools.) :( He doesn't seem to be too bothered by his ear the past two days, but he is still super snotty and his coughing has been increasing. Hopefully, it's just his system working to clear everything and get back to healthy. :) He has already missed multiple days of school and a lot of the time when he has been there, he has been sleeping, refusing to work or having seizures. We'll get through it though. I am confident in God and the amazing boy Lucas who is made in God's likeness. :)

He and Eliana are both getting so big. It is amazing how quickly it seems to happen. We will be shopping for a new gait trainer (assistive walking device) soon, as he has out grown the one we've had for the past couple of years. Eliana is not only walking all over, she's about in a full run and working on adding new words to her vocabulary daily. She recently learned 'potty', both in speech and sign and I am hoping to have her potty trained by 18 months. (She's 15 months now.) She started going potty on the potty at 11 months. We now just need her to recognize that she should tell us before she goes instead of as she's going or after she's gone. :)

We have some pictures on the camera, but we have yet to put them on the computer. When we do, I'll update the blog with a link to photos and video, if there is any. I am sure there is much more to say, but I think I am going to try to do something else in this rare time I've been given in which they are both asleep. :)

Blessings and love to you all! Thank you again for your faithfulness to our amazing Lucas Daniel, Boy Genius. :)

No More Apologies

A dear friend of mine in high school used to say, "If you were sorry, you wouldn't have done it." (What's up, Ashlee!?!) While this statement certainly does not apply, I believe, to a plethora of circumstances, I do think it is appropriate for my continued lack of regular updating on this blog. While I think it would be fantastic if I suddenly found myself capable to keep you all consistently and frequently informed as to the life and times of my beloved son, I don't foresee much changing in my life that would cause this. I have no interest in spending less time with my family and already walk the line of being ridiculously behind on house work. In conclusion, I have decided to stop apologizing every update and save my words for what's important. It'll also be nice to not have the weight of guilt on my head, it might make me feel more free to write more frequently (but don't count on it). :)

Since my last post, there have been several things worth mentioning. As for the seizures, for that is where I left you last, they were only briefly (extremely briefly) improved. We adjusted the shunt flow valve again and saw no change. We adjusted his meds and adjusted his meds again and things were getting worse. We are now in the midst of attempting a transition to a new med. It is a slow process. We are already over two months into it and are only at about 15% of the goal dose. We have not yet noticed much significant improvement, but it's still too early in the process to make any calls about success probability.

Lucas also finished off his first year of preschool including a five week extension into the summer. He has accomplished some incredible things. He is getting stronger in most every area and we are immeasurably proud of him. He is also getting bigger and taller all the time. He just turned 4 on May 14th, but he is wearing a size 5. He is an amazing moose. That's what we call him, "Moose". He is in the 75-90% for his height. Thankfully, he still only weighs about 35 pounds. :)

I can hardly believe it's been so long that I've updated that I am typing about how he is starting his second year of school in a week and a half in the paragraph immediately following the recap of the end of his first year. He will have the same team of teachers and therapists this school year as last with the exception of his vision therapist. Steve retired and we will meet the new Lady/Gent soon. We are excited about all that Lucas will accomplish this year, especially in light of all that he has conquered/begun to conquer over the past year. :)

I need to get dinner going and Eliana is trying to smash the computer, so I"m going to sum up quickly by saying that we just got back from vacation on Grand Cayman Island and it was too short. We went with my cousin and her family and had a wonderful time. There are pictures below of the vacation and some other stuff that has happened in recent months. Also, Eliana has begun walking. She took her first steps the Saturday following her Wednesday birthday, but is now, at thirteen and a half months old, finished with crawling all together and is walking all over (unless she's being carried. She still likes that a lot too. :)) The final bit of news is that Lucas is having surgery tomorrow. It is the final closing of the extra dribble whole in his pee path. The dentist is also going to come in while he's under anesthesia and do his dental cleaning and x-rays. It shouldn't be a long day and it will hopefully be his last surgery until he needs an extension on his shunt tubing (which is supposed to last until he's around 5' tall). I'll try to get something up to let you all know that he's all well and good post-op. :)

Eliana's now crying, so I'm off! Blessings to you all! Thanks for putting up with me and loving our amazing Lucas!

April 2011

May 2011

June 2011

New York Trip - June 2011

Grand Cayman 2011

Some new pics

Feb & March 2011

Life is never boring, if you pay attention. There is always wonder all around us. It is often easier to recognize this when with children. At least, that is true for me.

There is much to offer in the form of updates. Much more than I will likely type. I forget things and get lost in the everyday. A few things are worth noting though.

You might have noticed in a few photos that Lucas got glasses. We have had the Rx for them for months, but finally got them in January. In February he was fitted for orthotics. He has been rolling his ankles in toward each other for sometime. As we are trying to encourage him to stand and walk more, we want to be sure that there is no malformation in his young form that carries into his life-long form. THey fit over his foot entirely and there is a hinge connected to a support that covers his ankle and most of his calf. We had to get new sneakers to fit the orthotics inside them and we got another pair for a more sturdy everyday support in his actual size. It's funny that though the orthotics-sized sneakers are 3 sizes larger than what he needs, they don't look like clown shoes at all since he is so tall. :)

In February we also had a check up with his neurologist, Dr. Burris and had blood work drawn to make sure the medicine is doing no harm. Since beginning this medicine (Felbatol, it's called), his seizure activity had decreased from around 50-60/day averages to 15-30/day averages. His blood work was also perfect, no harm from the meds.

February closed with vomit. Yes, vomit. Lucas threw up all he had eaten on Thursday the 24th, again on Saturday the 26th and again on Tuesday the 1st. Every time his appetite returned, so did the vomit. No fever. Behaving pretty much normally. Vomit. After that third incident, we brought him to the hospital. They found that the setting on his shunt (it can be programmed to different flow rates, allowing more or less fluid as the need may be) was set two settings off where it was supposed to be, allowing too much fluid to be excreted and the fluid level in his brain was low. It was not severely low, but still lower than it should have been. They also discovered a urinary tract infection (UTI). Neither of these things typically cause vomiting, but it is not outside the realm of possibility that either could. It is also possible that he had a virus causing vomiting and that caused decreased fluids in his brain and that kept the vomit coming. We don't really know. What we do know is that he is doing much better now.

They gave him antibiotics for the UTI and reprogrammed his shunt to adjust the flow rate. His appetite is back in full swing and the food is working its way all the way through him. (Oh, how someday he will ask me why I had to talk so much about his poop!) They only kept him overnight. Marc stayed with him through the night and Eliana and I stayed late and returned early. It was not the way Marc prefers to spend a day off work, but Thank God he was able to be there with us. And thank God it was such a short visit. It is still too early to make an official judgment, but it seems that perhaps adjusting the flow rate has impacted his seizure activity. He has hardly had any that we have noticed. Two or three in a day, if that since Saturday. Pretty exciting, right? It's amazing how something that seems so awful can result in such a beautifully wonderful thing. God is good.

One other Lucas announcement comes just today. At school he held his cereal bar (like NutriGrain) and gave himself a couple bites with his teacher only supporting him at the wrist. At home for lunch he did the same thing with his sandwich. I placed it in his hand and he brought it to his mouth and took a bite! He's done things like this before, but only once in a while, and he acted almost as if it were a mistake, that he was really reaching for his cup, not his spoon/fork. Today's actions were purposeful and repetitive. THis is a great step in the self-feeding direction!

In Eliana news, she had been taking a talking hiatus while figuring some physical stuff. We visited my grandparents and after a few minutes with her Great-grandma Rene, she was talking up a storm again. We haven't been able (not that we've tried or want) to get her to stop. She is a constant gibber-jabber. :) Also, just this Sunday evening, she decided to crawl for the first time. She has been scooting for a while, backwards since around Thanksgiving, but this was the first genuine-proper-form crawl. Marc put a video on youtube. She was pretty much done with the crawl by the time he got the video going, but you can still get a peek.

I'm off to cut the boy's hair and give him a bath. Blessings to you all!

It's all about perspective

Anyone who has spent much time with me might have observed that I drink a lot of water. I am pretty much always thirsty. Some people see a glass half empty and some half full. I see it as always refillable. As 2010 came to a close and 2011 began, Marc and I noticed that there were many complaints from individuals about how terrible 2010 was. Several people listed specific hardships/complaints. I consider this to be a waste of time, energy and life in general. I believe there is always more on the thankful list than the complaints list. Of course, if all I did was compose lists of complaints, that would leave a dwindling list of thanks. I choose the thanks, however, and am certain my life, my kids lives and anyone else I know is better off because of it. 2010 did come with some struggles, but it also came with great joy and it's the joy I choose to remember.

I don't know what all of you might have said about 2010, but I hope that as you look upon it, your eyes will be opened to the grace you experienced in spite of whatever struggle you may have faced. I also hope that as you look to 2011 and the years that follow, you look with the expectation of joy, even hidden in what might initially present as sorrowful times. For us, 2010 saw surgeries (for Lucas and me), a second child (yeah, Eliana!), Lucas beginning school, us trying (and failing) to sell our house, and many other things, wonderful and sometimes challenging things. 2011 will certainly be an adventure as well, filled with challenges and joys immeasurable. :)

There are many pictures to share and some videos, though the videos are not posted yet. The pictures include our visit to NY, just in time for the Christmas Blizzard and some since we've been back home. We hope you enjoy and we will get some videos posted soon too.

Blessings to you all. I pray you see the wonder in 2011 and have a happy Groundhog Day. (Yes, I realize it is already February.)This is one of those rare years in which he didn't see his shadow, so... whatever that means! :)

Christmas 2010

January 2011