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