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. :)

Some new pics

Here are some new pics of Lucas and Eliana - including some pics from Lucas' graduation from Delta Gamma vision therapy.

August 2010

Back to "Normal"

Things have been pretty busy since Lucas' surgery June 14th. We had the delivery of lovely Eliana, Grandma and Grandpa Brooklyn came to visit, post-op and postpartum appointments, trip to NY (which I would never recommend so fresh from the knife with one so fresh from the womb, though it was nice to see family), more doctor appointments and finally, settling in to home life. I'd say the past two weeks have been about finding normal.

There is still a ton of stuff to do around the house. The transition of bedrooms, Lucas into his new big boy room and Eliana into the crib room, is still incomplete. I'm still a bit of a house and in between maternity and "normal" clothes, so both are taking more then their fair share of space. We still have chaos from what was put into storage while our house was on the market and I really should get outside and groom our landscaping. I get a little accomplished every day, but most days it is only a very little. These things battle with the every day needs of laundry, dishes, cleaning and cooking, not to mention the snuggles and therapies and diapering and feeding of the kiddos. :) It all will get done eventually, I will organize the bedrooms, lose these 20ish pounds, and get outside once it drops below 100 degrees, actually, preferably below 90. :)

This version of normal is good, but we are about to embark on a whole new Normal beginning next week. Monday morning, August 16th, Lucas will be attending his first day of preschool. This is our last week with his therapists who have been with him over the past three years and he will begin getting all his therapies through school. He will be there from 8:30-11:30 Monday through Thursday and, rest assured, I am totally prepared to cry. I can hardly believe that he is, so fast, such a big boy. (Of course, then I look at him and realize what a moose he is and there is no denying!) I know that I will miss him terribly while he's at school, especially in the beginning, but I am excited about it. We will establish a new routine and Eliana and I will get some time just the two of us too. Hopefully in the time Lucas is in school I will get my shopping and exercising and napping in. (You realize my priorities in the previous sentence are not in order, right? Can you guess which is really number one?)

I will update again soon, telling you all about how I wept uncontrollably as I sat in the parking lot of the school after leaving my beloved son with practically complete strangers and how, with each passing day, I wept a little bit less and grew more and more proud of my handsome little moose. I'm sure there will be other things to tell as well. There will also likely be more pictures. For now, here's what we've been taking lately. There are more on the camera that have yet to be uploaded online, but we should get them added in the next few days.

For now, enjoy the pics and be blessed!

Eliana - week two

Early Summer 2010

Late July 2010

Early August 2010

Drinking like a big boy

Lucas started grabbing at his cup and bringing it to his mouth sometime last fall. Here's a clip from October 2009:



He wasn't doing it consistently back then, but today it's a different story. Today, Lucas only drinks from his cup if he's holding it, and just last week he started picking up the cup himself from his table tray. I just got a new camcorder (Canon M30, which is all digital and is way nicer than having to deal with video tape), and I was able to catch Lucas picking up his cup last night (it happens very quickly at the beginning of the video):



And - here's a clip from the other night when Lucas was hopped up on sugar after eating a donut for dessert: