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

Yo, that house is ill!

Seriously. It is mad sick up in there!

No, but actually seriously...

Remember when "bad" meant bad instead of cool (or when "cool" referenced temperature?)? Now "sick" and "ill" are joined with "bad" and others to express good things, especially good even.

Around here, we have both meanings in effect.

First of all, the kids are sick. They have been for weeks. Lucas started, passed to Eliana and back again, I guess. Snot and coughs and trouble sleeping. Lucas missed almost two whole weeks of school over it. Gone one week, back the next and sick again the next. At this moment, he is sitting next to me crying because he is so tired and is trying to fall asleep. We did this for hours in the night. Mommy's tired too, Buddy. I feel like crying too sometimes. :/ Thankfully, thus far anyway, Marc and I are both healthy. (Thank you, God for everyday miracles!)

In other sick/ill things, we put an offer on a house. It is sick in the beautiful sense. It's twice the size of our current home and has almost every feature we've said that we want in a house (if we didn't just build our own). It is a short sale which means that the bank is willing to take less for the house than what the current homeowners owe. This means that we have to wait to see what the bank will say about our offer. It is a process that rarely moves quickly. It could be days, weeks or months before we hear back. In the meantime, we are trying to not get our hopes too high, but I have already begun paperwork for the (possibly) new school district for Lucas. We will keep you posted on that front. :)

Lucas has stopped fussing, but needs to sleep, so I am going to try to get him more comfortable and, hopefully, not wake his sister in the process. (Then, perhaps, Mommy can get a little rest too!)

Here are a couple of videos and a link to pictures for now. :)

Blessings and Merry Christmas if I don't get to it before then!

Late November 2010

Life Sucking

Everybody has known someone at one point or another who qualifies as a Life Sucker. A needy individual who, no matter how much life you pour into him/her, is always desperate for more. These individuals drain, or rather suck the life out of us. There are certain activities that do the same. Some people (too many) have jobs that effect them this way. For some, it is major events like large family gatherings. There are all kinds of things. For me, The two that stand in the forefront of my mind are the internet and shopping.

I love connecting with people, reconnecting after time passes, making new connections. Generally, I love people. I also love to talk about my amazing children. I love sharing the exciting (I think it's exciting) things that go on in our lives. I do. I love it. Of course, those of you who check this blog regularly and find no updates for weeks or months at a time might be drawn to a different conclusion. It happens this way because the internet is a life sucker for me. I barely maintain the status quo and rarely make progress in any area. If I get time to sit at the computer, I can't help thinking the time would be better spent eating or ironing or cleaning or organizing, or (could it be possible?) napping. (The latter most, by the way, never really happens.)

I recognize this to be a bit of a short coming of mine. So, once again, I apologize for my internet slothfulness and will move on to sharing about the children. :)

A few days after the last post, the blood returned. We neglected to be consistent in some of the measures we had taken to regulate the bowels and, unfortunately, Lucas has to reap the consequences. Since then, we have been more consistent and have added another character to our pooping production, probiotic-filled yogurt. The past four days, he has pooped twice each day, and they have not been the hard pebbly poops we were seeing. (Yeah for poop descriptives!) He is still having some blood, but I think it is decreasing and, hopefully, it will be gone and stay gone soon. We can at least take comfort in that it doesn't seem to cause him any discomfort. The urologist is there if we need him and has been quite encouraging. As for follow up surgery, he is comfortable doing it as soon as January though we are planning to wait until the summer, I think, so as not to disturb Lucas' school schedule.

We have also been to Dr. Lueder, the ophthalmologist, since the last post and got a prescription for glasses. He said that he feels comfortable leaving Lucas' eyes as they are. I told him that he will be having another surgery on his boy parts some time next year, so he said to come back in about 6 months versus one year to be reevaluated in case he changes his mind and decides that further surgical correction is a good idea. As for glasses, we have yet to get his prescription filled. Dr. Lueder isn't concerned with him wearing glasses as of now and recommended we not spend a boatload of money on something Lucas might refuse to use. This seems like sound logic to us. We've checked a couple of more affordable places, but they don't have frames for his size. There is much more checking to be done. I know there are lots of options; I just need to look into them.

Lucas is continuing to do well in school. He's got all "A"s thus far. :) He is still adjusting to the time of hard work that's been added to his life, but I think by the end of the school year, we'll get there. :) He is now drinking through a straw like a champ and growing stronger in the arts of sitting, standing and walking. Last week, Eliana and I spent the day with him and it was fantastic. It was an impromptu decision and I was unprepared for it, but am planning to do it again, possibly as soon as this week. I will have camera in tow, perhaps video also, so that you can share the experience too. :)

Eliana is awake now and has done a mondo poop, so I am off to get her cleaned and changed and then head off to another life sucking event, shopping for jeans that fit me. I hate shopping for most anything but groceries. I gotta do what I gotta do though. :)

Thanks for reading, for praying, for caring. ;)

Here are a few more recent pics.

October and November 2010

Eliana eats cereal for the first time

No more blood... and other stuff

We've invested in Metamucil powder and have seen some results. We have worked the poop angle to conquer the blood and it has been a success! Hoorah! (Please read previous post for clarification if you have no idea about what you just read.) We will follow up with the urologist in November to discuss his last surgery and the one to come to finish closing the extra hole for good. He is confident that it will be a super quick and easy fix. I think I have said before that he will likely have a second surgery on his eyes and so the urologist and ophthalmologist will likely share the OR (operating room) again. We will see the ophthalmologist the end of this month. We'll be getting glasses then too, I think. How cute, right?

In other news, we have been working on a new drinking cup for Lucas. He finally mastered holding his own cup, but the safety was off, so we had a mess of slobbery puddle to clean after every drink. Recently, at school and at home, we have been working with a honey bear. It's a bear shaped squeezable bottle that is usually sold containing honey. It is also commonly used by occupational and speech therapists with a straw inserted in it to teach children how to suck. The liquid can be brought to the child's mouth with a gentle squeeze of the bear and the child eventually learns to draw the liquid from the bottle on his own. We have tried the honey bear off and on for a couple of years, but it seems, this week, he is really getting it. This morning, he has been getting his fiber-infused water without any parental assistance. Well, we still hold the bear because it doesn't have a handle, but he's been drinking without us squeezing. It's very exciting. I am now going to buy him a straw using cup with a handle so he can do it all himself.

Lucas continues to do well in school. He is still adjusting to the more rigorous schedule, but getting much better. I think that another month and we should be pretty regular. He is also an amazing big brother, so loving and tender with Eliana. She is over the moon for her big brother. She loves watching him and waiting in great anticipation to see him smile in her direction. They are amazing. We are immeasurably thankful. :)

There are some pictures Marc posted online for your viewing pleasure of our two adorable children. There will be more to come as the month of October has just begun. There aren't as many of Lucas in NY because he was sick while we were there, so we didn't bring him out so much.

Blessings and love to you!

September and October 2010

I think I've stopped crying

At least I have managed to hold back the tears every day of school this, Lucas' third, week of preschool. He seems to enjoy going quite a bit. His teachers and therapists seem to enjoy him as well. There have been a few hiccups as far as school goes, but we should have everything sorted by next week. His teacher was switched last minute and some of the therapies and goals which should have been included in his individualized education plan (IEP) were missing. There are only four children in his class and there is one teacher and three assistants. Physical, occupational and speech therapists are in the room a great deal and the vision therapist comes once a week.

As Lucas seems to enjoy school, it is also quite a jolt to his schedule. Most days he either sleeps late (and we are late to school) or falls asleep at school. Because of the importance of sleep in regard to his seizures, I've asked his team to let him sleep. It is a new experience to have 3 solid hours of working. At home we have never worked so much in a concentrated period of time.

With the schedule change, his entire homeostasis seems affected. His sleep schedule is off, his eating schedule is off, his pooping schedule if off and his seizures are off. We have also increased his dose again of the Felbatol. Another fun thing of late is the addition of blood in his urine. The urologist, Dr. Austin, believes it is related to the recent back up in the bowels. Apparently it is not uncommon that the bowel and bladder suffer retention issues together. He did an ultra sound of Lucas' bladder and found everything looking great. He has had no symptoms of infection, so we are keeping our eyes on him and working to get over the constipation. If it doesn't resolve itself as the bowel back up is resolved then we will see Dr. Austin again in a couple of weeks. Things are still healing in there and it is understandable that there is a great sensitivity to pressure from the back side. :)

Considering all the changes Lucas has been experiencing recently, he is, as usual, doing remarkably well. He is joyful and loving and wonderful. He continues to be fabulous with Eliana. She gets a kick out of his squeals and gargles and he is sweet and tender with her. He gets quiet and concerned when she gets upset. She is getting bigger and stronger all the time. She's at least doubled her birth weight already and not stopping there. She had her first round of immunizations on Lucas' first day of school and was a true champ.

It is amazing to me that in spite of what a rotten person I have been at so many times in my life that God would still bless me so richly. I have a husband who loves me and still thinks I'm beautiful, even sexy, with 20+ pounds on me that needs to come off and these two amazing children who have such lovely temperaments... I can only gush with thankfulness. I know I am undeserving, but eternally thankful that God chooses to give good things anyway, just because He loves us. :)

I pray you recognize His love today and thank you for keeping up with us in spite of the fact that I am so not good at keeping up with all of you. Blessings dear friends and strangers. :)