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. :)

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:

Eliana's Birth Story

So... As Marc already posted, Lucas' surgery seemed to be a success. We had a bit of a rough Monday evening; I think a combination of coming out of anesthesia, off the numbing sensation of the lower half of his body, and the lack of food for almost 24 hours weighed in at least as much as any discomfort he might have had. After he got some food in him (a giant bowl of oatmeal!) he seemed to be feeling much better and went to sleep well. Marc and I were exhausted. I had slept terribly the night before his surgery, but thankfully, we all got great sleep that Monday night.

Tuesday began pretty normally aside from no potty time for Lucas and the addition of pain killers to his medication regimen. He was in a good mood and feeling pretty well as long as no pressure was put on his boy parts. :)

Around 1 o'clock I began to notice that I was having regular contractions. They were about 3-3 1/2 minutes apart but still ignorable as I continued with regular tasks like lunch and laundry. By about 2:30, they were not ignorable and a steady 3 minutes apart. I called our Bradley (birthing class) instructor to ask her opinion about the possible seriousness of the labor. It was around 3:00 that we spoke and by that point, I was having to stop and focus on the contractions and my breathing. She was actually able to time my contractions over the phone because I would go silent every time they came. She convinced me that I should probably call Marc and let him know this might be something real. I called him around 3:30 and he got home a bit after 4:00.

My dear, long-time friend Katie was planning to come over that day to learn the ropes of Lucas care so that she could help when I went into labor. It was a good thing she was free, because we needed her for sure. :) I also had called my mom earlier in the day and then again after I called Marc. By 4:30, everyone was at the house. I took a shower and then the fun of everyone trying to time contractions, figure what still needs to be thrown into the hospital bags and giving instructions for Lucas' care began. It might well have been sitcom worthy.

My contractions had progressed to about 2 minutes apart, but still were not lasting a super long time. I wasn't really great at identifying their exact beginning, but I could certainly identify when they would begin to ebb away. By 6:00 I was moaning through every contraction and was fairly easily convinced that it was time to get moving toward the hospital.

We arrived at the hospital around 7:00 and it was a horrible car ride there. The car did not allow me the position I preferred for contractions and every bump on the road was super annoying. They got me into the triage room to check me out as soon as we arrived. When they checked me for dilation, I was only 1cm. (10 cm is when it's time to push.) I could tell that the baby was not engaged in my pelvis the way she needed to be and had been concerned that she had flipped to breech (head up) again (she had been that way around 34 weeks) just the week before. The house OB felt around on my belly and decided to have a look with the ultrasound machine. Sure enough, head up and tush down and the c-section call was made.

I was heart broken. I immediately began to cry, which I highly recommend against in the midst of labor. It makes it much more difficult to relax and breathe through contractions. :) We walked back to the operating room just before 9:00 and my OB met me there. He said to me, "It's okay. God has His plan." Through tears I responded, "I know; it's just really not what I wanted."

When they got into my uterus, the amniotic fluid was stained with meconium (the first poop) and the umbilical cord was wrapped around her throat twice. My doctor also said that the uterine wall did not seem likely strong enough along the incision line from my first section to have safely continued through full natural labor and delivery. In full knowledge of these things, I can see that it was better to get her out quickly, but I also can't help but wonder that things might have been fine if she had just been head down. My labor was moving super fast and she was so little. Doesn't matter now, I guess. Now that I have her in my arms.

She weighed in at 5 lbs 15 oz. That's what they told us and what was documented. Though Marc photographed her on the scale and it looks like she was just a tenth of an ounce shy of 6 pounds. They also measured her at 19 1/2 inches long, but six days later at the pediatrician, she was 19 inches flat. We measured twice. She must have thrown in a last minute squirm to make herself appear taller on her birth day. :) Her apgar scores (based on color, breathing, ectera) were 3 and then five minutes later, 9 out of a possible 10.

She was a little gaspy for the first couple of hours, but was never taken away to the nursery or put on supplemental oxygen. She took to nursing right away and is proving to be all together beautifully healthy. At her first pediatrician visit, she weighed in at 6lbs, 2oz. She is beginning to fill out through a second chin already too. :) Pretty soon, she will be able to fit into the cloth diapers and newborn sized clothes too. (Currently she's in preemies though I just keep her in gowns with the sleeves cuffed.) We will take her in for an ultrasound of her hips next month to make sure there is no hip dysplasia. There is no sign that there is, but it is a regular inspection for a breech baby

We were discharged just 37 hours after she was born and glad to get home. It really is my favorite place, I think, with my husband and kids, sporting sweats and a tank. :)I am healing pretty well. I think I over did things a bit and have moved in ways I shouldn't have in the night with out thinking several times, but if I tore any stitches in muscle tissue, I am confident they will heal up fine. All that I did after Lucas was born, I have to believe I will be fine again this time :)

She has a lovely temperament, is strong and alert (when awake) and Lucas has been wonderful with her. He will hold her and snuggle her. We just have to watch out for his sweet head smashing snuggles. She's not quite ready for those. :)

I need to get some lunch in her big brother now. Hope I didn't bore you with details or leave too much out of the story. Thanks for reading and caring. More pictures are soon to be coming!

Love and thanks!

Video clip from last August

Lucas is looking so much like a big boy these days, it's hard to imagine how much he's changed over the past year. I was looking through some pics and videos that I took on my phone last night and came across this video that I thought was cute. His cheeks were so much chubbier back then...

One busy week

Lucas' surgery started around 7:30am on Monday, which meant that we had to be there at 5:45am. The surgery was done in two parts, with urology going first and ophthalmology second. Everything went very well, and the surgery was over by around 11am.

The ophthalmologist said that there is a 50% chance that Lucas will need a follow up eye surgery, and that it will take around 3 months for his brain to learn how to use the new eye muscles correctly. Even now, we see an improvement - with his eye not drifting to the outside, but still occasionally drifting inwards. Our hope is that Lucas will learn to use his eyes more and more, and his development will speed because of it.

In the last few months, Lucas has been getting much better control over his body. He can hold his cup and drink from it on his own, and is beginning to be braver about taking steps (while somebody holds him up by the arms).

So far, he's been very sweet towards his sister - and it's amazing for us to watch her and see the things that she is able to do within days of birth that Lucas is still working on. But as she grows bigger and it becomes safer for her to spend more time dodging Lucas' headbutts - we hope that her development will encourage Lucas all the more.

I'll let Esther give an update of Eliana's birthday. I posted some more pics and a video of her from the night she was born:

Eliana Piera DeSantis

Eliana Piera DeSantis

More to come. For now, here are some pics

Eliana Piera DeSantis

Dedication Day

We've said many times that Lucas belongs to God, but we've never had a formal dedication for him at church. Since baby peanut is only a few weeks away, we thought now would be as good of a time as any. Grandma and Grandpa Brooklyn flew in for the weekend, and we had a great time going to Grant's Farm on Saturday. At church on Sunday I got to share Lucas' story during the dedication ceremony, and we had a big group of family and friends meet up with us at Yacovelli's for lunch afterwards. A good time enjoyed by all.

Here are some pics from the weekend:

Lucas' Dedication Weekend

Exciting New Update!

I'm currently in the office next to a super-joyful boy with a growing puddle of slobber beneath him. He is cute beyond words. :)

Anyway...

Today we saw the neurologist (Dr. Burris) again for our regular appointment. (We go every 3-4 months.) For the past year or two, most appointments are the same; we talk about seizure numbers, medicine effects, possible other medicine options (when appropriate), and the possibility of scheduling the surgery that would correct Lucas' drifting left eye. The surgery was scheduled almost 2 years ago, but was canceled by the anesthesiologist the day before due to his concern about Lucas' seizures. Dr. Burris gave the okay, but not in enough time. (They did not give him much time to return their call before they pulled the plug.) Today, however, Dr Burris said "Go ahead!" As soon as I could call the ophthalmologist's office I did. :)

There is another procedure that Lucas is to have as well that is performed by another doctor. When Lucas had his hypospadias correction, a little hole formed along the suture line and the urologist, Dr. Austin, wants to close that up. Currently, Lucas pees from two holes. Kind of cool, but not the kind of cool you want forever. The nurse from Dr Lueder's office (ophthalmology) and the nurse from Dr. Austin's office made several phone calls back and forth and to me in between trying to schedule as soon as possible without interfering with Baby Peanut's birth or our trip to NYC for Marc's sister's wedding. They pulled some strings and we are a go for surgery June 14th!!! I am super pumped about this. Marc, the worrier in the family, is concerned the stress of Lucas' surgery will encourage me to go into labor 10 days early, but I reminded him that he is the worrier and I will be fine. It is an out patient procedure and he should be all healed and fine and fabulous with eyes aligned for his role as ring bearer. :)

I am also excited about this because I have been hopeful that we could get it done before he begins preschool in the fall. We had his Individual Education Program (IEP) meeting this past Friday. We met with the team of people who will be supporting him through the school year, should we stay in this school district. The team includes the classroom teacher, all the therapists (new ones, not the ones he's had so far) and the school nurse. They were all lovely and I feel that I can trust them with Lucas' care for three hours a day, four days a week. The purpose of the meeting is to get to know Lucas' needs a bit better (he had several observations/evaluations previous to the meeting) and to set achievable goals for the school year. One is that he stand unassisted for 2-5 seconds two out of four days in a week. Another is that he pick up and drink from his cup on his own. There are many others. All of them , I think will be great and I hope will be achieved before the end of the school year.

As far as where we will be in the coming school year, that has yet to be determined. We have looked at a few houses and our house has been viewed a few times, but so far no bells or whistles sounding on either front. The tax credit is scheduled to expire the end of business tomorrow. We have not decided what we will do, stay on the market and keep eagerly looking or pull off and settle in at least until after the Peanut arrives. Nothing more really to say about that now, but we will let you know if anything moves there. :)

I need to get to dinner now. We have a few photos to post, and hopefully more will be coming next week, perhaps along with some exciting video of another giant progression Lucas is beginning to make. I would write about it now, but instead I am going to get to food preparation. I think my family will appreciate that and you all can chew on this exciting bit for now, with growing anticipation of more in the near future. :)

Blessings and love to you all!

April 2010

Having some fun

There's a lot of news to report on the Lucas front, but for now here's a little video of me and Lucas having some fun:

Getting messy

Lucas is getting his molars in, so he's been getting especially messy during dinner lately. He loves to put his hands into his mouth (all day long), but especially so when he's eating - which results in a lot of food getting everywhere.

Tonight at dinner he was having fun gurgling water and then letting it all fall out of his mouth. I didn't get the messy part on video, but at least I got the cute part:

Little man comes to work

Lucas and Esther came to meet me for lunch today. Lucas got to hang out at my desk for a bit:

Here it is

We've told many of you that there exists some video of Lucas playing and "talking", but are only now posting it. I am thankful for the technology; I just hardly use it. :)

The back story is this:

Lucas has begun to make some talking sounds again, for the first time in over a year. We are super thrilled about this and eager to share our joy (though apparently not eager enough to get online and post about it for over a month now; I am a true blog slacker). He isn't saying words, not in English anyway, but he is definitely making sounds he hasn't and forming some kind of language-ish vocalization. This began within the first ten days after we stopped the Depakote. Not sure how related the two are as Lucas also seems to be growing (eating a ton!) more and he is cutting his two year molars (super slobber!).He is tolerating the new medicine, Felbatol, quite well. It is a liquid that he only has to take twice a day.

Having the freedom to not put medicine into his food is an almost incommunicable relief. I don't think I realized the stress I experienced fretting over the consistency of his food, how much he ate, whether or not food would fall, etcetera. We have been able to get back to challenging him in texture, consistency and size of his food. It is good for him to grow in this. It isn't typical to think about the struggle a child might face eating a chicken nugget, but until recently, Lucas wouldn't eat it unless it was mashed and mixed with potatoes or overcooked pasta or something else you can smash. Little things bring great joy to my life. :) He also, just in the past few days, has begun to realize how to use his fingers to get food unstuck in his mouth. I was feeding his peanut butter and jelly and was unsure at first what he was doing. We had never seen him suck his thumb, but he was. A few bites later, he was sucking his fingers. Then we realized he was wiggling his phalanges around his mouth to loosen the food stuck to the roof of his mouth. Our brilliant son. :)

As far as the seizures, they are still present. We just increased his dose again two nights ago. I feel it is still too early to say how it's working, but there seem to be some certain improvements. Nothing consistent yet, but the numbers seem to be dropping. We also got the results on his first round of blood work since beginning the Felbatol and his liver and bone marrow functions seem fine. Praise God!

He also seems to be more stable physically. He is getting stronger in his arms and legs and is holding up his head/trunk much more steadily. You can see in the video him using his right hand also. (He's a lefty, but we encourage him to use his right hand too.)

I hope you enjoy. I am off to fix dinner.

Love and blessings to you all!

Lately...

I know I have hardly been up with this. What posts have been made have been made mostly about Baby Peanut and not Lucas. So, here's an update on him.

I don't remember if I posted that he had had an excellent decrease in seizures a couple months ago. For about six weeks, he stayed pretty consistently between five and nine a day. Some were really big and, more days than not, he would fall asleep for a while because a seizure would take so much out of him. It was disconcerting that he was having such severe seizures, but it was encouraging that they were consistent and we were hoping to schedule his surgery (to correct his "lazy eye"). The neurologist wanted blood work done first to check his liver function and platelet count (clotting cells in the blood); both can decrease due to taking Depakote. The day we got his blood drawn, he started coming down with a cold and the seizure count increased to 35. The cold came and went, but the seizures stayed between 35-55 daily. His blood work showed that his platelet count had been somewhat reduced. It was still in the normal range, but it was lower than it had been and we don't want to see it get much lower. The platelet count can drop as the Depakote dosage increases, so Dr. Burris did not want to increase the Depakote again.

Last Wednesday we went in and talked new drugs. Thursday evening, we began Felbatol. It is a liquid, which we like because Lucas takes it easier. We don't have to worry about how much he eats or if he has medicine on his fork/spoon and the swats it out of the way and it flies across the room. :) He seems to like the taste just fine. We are thankful for this. I'm sure every parent out there (even pet-parents) know that it is painful to force something on a sweet little Love who does NOT want it. :) We began decreasing his Depakote last Wednesday evening and he will be finished with it entirely in just over a week.

It is difficult to say if there has been any positive effect as of yet due to the fact that Lucas has again come down with a bug. He's got a snotty nose and cough and has lost his voice (which is actually really cute!). I will say that the intensity of the seizures has decreased to some degree, but it I don't want to say anything for sure until he is feeling better.

As for prayer requests, I guess I will ask again that none of the negative side effects occur with this new med, especially bone marrow or liver failure, and that the med will work even if he gets a cold or has a growth spurt or misses a single dose or whatever else seemingly insignificant thing that can sometimes throw off the effectiveness of a drug occurs. We pray that this will work, successfully, harmlessly and consistently. We really want to schedule his surgery and hope that we will see (no pun intended) some great improvements from that as well.

We know it's all in God's hands, and we trust those hands. We pray you do too. :)

Attached are a few pictures of Lucas and of the bump beginning to sprout containing Lucas' little brother or sister. Glancing at the pics just now, I think I am surely bigger already. I know we've been slacking on that, but we'll try to get some more up so those who don't see us regularly can enjoy the belly too! :)

Thanks for all your love and prayers for our family! Blessings to you all!

January / February 2010

A healthy baby on the way!

Yesterday was Esther's 18 week ultrasound. It was a stressful time for me (Marc), since it was this ultrasound that told us that Lucas had brain abnormalities - and it was going to be with the same ultrasound doctor who suggested that we abort Lucas.

Our ultrasound technician (Beth) was great. She quickly focused in on the brain and within a few minutes told us that everything looked perfect! A wave of relief washed over me, and everything from then on was a bit of a blur. We told her upfront that we didn't want to know what the sex was (what does it matter anyway? They told us Lucas was going to be a girl!). We got to see baby peanut moving around a bunch, and got to see a bit of the baby in 3D - although it's a bit early to actually make out any real facial features in the 3D pics.

The doctor came in after the technician left. He also confirmed that everything looks perfect with baby peanut, but mostly seemed interested in knowing more about Lucas (from a clinical diagnosis standpoint). We told him about the joy he has brought to our lives and about how great he is doing. He urged us to make a follow up ultrasound appointment just to make sure that baby peanut is still OK in 6 weeks. We agreed so that we could get out of there quicker, but we didn't like the idea of going back to that office. Esther's OB agreed with us that this appointment seems unnecessary, and asked us to give him a call in a week so that he can have a chance to look over the scans. As long as everything looks fine to him, we'll cancel the follow up ultrasound.

We're grateful to God for the wonderful news, and we're so excited to meet the little one. We really need to start thinking about some names...

Ultrasound 1/20/10

Happy New Year!

Well, we just got back from another Christmas in New York City. It was great spending time with people we love and eating lots of great food along the way. We all had a busy week, and none of us even came close to staying awake until midnight last night.

Now that we're back home, there's a lot that we need to start doing to get ready for the new baby. We'd really love to move into a bigger house, but there are a few minor things I need to get done before we put the house on the market. Assuming that we will even be able to sell our house in a reasonable time frame, there's the big question of where we should move. We want to find the best place for Lucas, but there isn't a lot of information out there on the internet about special education programs. We'll need to start making phone calls and setting up some face to face meetings so that we can figure out where to start looking for a new home. The current idea is to make a move before the home buyers tax credit expires in May, but we'll see what God has planned for us.

We didn't take as many pictures as usual on this trip, but I think we got some good ones:

Christmas 2009