Meds Time Frame

We finally heard back from the Neurologist, who told us that they are trying these Anti-Seizure Meds to see if they make the seizures go away. They should work within 10-14 days and we should notice a significant decrease in seizures by that time. If not, then his seizures can't be controlled by medication.

We've learned that the two nerve clusters in his frontal lobe area of the brain can be the cause of seizures, and that those type of seizures don't respond to medication very well-or not at all in many cases.

Which is kind of a catch-22. If the meds don't work, then we know that he doesn't have a syndrome that causes seizures and he won't have to be on anti-seizure meds the rest of his life. But it also means he has a condition that causes seizures, and that he can't take any meds to control it.  (that made more sense in my mind than when I typed it out).

Anyway, still waiting on results from tests and loving the return of his smiles.

"Sign of Relief"

     Great news! Our little guy has begun smiling and reacting again to us! Still not as much as our other kids, but he's just about back to where he was before. It's amazing how brighter the house feels when an infant smiles.

     The "seizures" are still happening, about 20/day that we notice,  . . . .  but he's happy. That makes us happy.

When a Smile brings a Tear

Who would have guessed that a simple, real smile could bring tears. We've missed our little guy's smiles. For some reason we haven't been able to get a real smile out of him for almost a week. No real sadness either. He's just always there, in a semi content state. Our daughter showed us a picture on her camera of our little guy with a big smile, taken  a few months ago, and it reminded us how much his smile used to lift our hearts, and how much we miss it.

But tonight, after eating some baby cereal, he looked right at mom and gave a beautiful smile that nearly brought tears to my eyes. I pray that they keep coming.

2 Days of ASM (anti-seizure-medication)

So, after two days of anti-seizure medication, the seizures have dropped down to a few a day (that we've noticed, they're easy to miss). So it would appear that the medication is working . . . but we've heard from people that the medication doesn't make you feel very good. Some say it gives the "gloom and doom" sensation. We've noticed a decrease in smiles--he's never really reacted too  much to faces and efforts to make him smile, but it's gotten worse with this medication (or maybe he's just holding a grudge against us for making him endure another catheter episode).

So, my question is this: Do you, or anyone you know take seizure medication, and if so, does it have bad side-effects like making you not feel well. We can't really ask our 6 month old how it makes him feel, so we need your help. And in truth, since the seizures aren't bad ones, and don't effect his brain (doctors say) and he can still breath since they're so short, would it be better to have the seizures than a medicated 'doom and gloom' feeling?

On another note, more tests are being run. Today we took him up to Primary Children's Hospital again to have some blood drawn. I think they're sending this one to Maryland to be tested.

Again, thanks for all the prayers and concern. We love you all. We feel so blessed to have such great family and friends, and to have our little Easton in our family.

Seizures?

       Been a while since we've posted. Probably because, #1 Things have kind of settled down with the issues our little guy is facing, and #2 it feels weird to post about a kid who doesn't have Trisomy 18, on a blog about parents of a trisomy baby. (note to self, change the blog title).
       But the newest excitement in our adventures with our little guy comes in the form of what we are calling 'seizures' (still haven't been verified that they are truly seizures). He'll be looking around, minding his own business, when suddenly a misfire in his brain forces him to roll his eyes (not the teenage eye-rolling, mind you) up into his head and drop his head. It only lasts a second, then he pops his head back up, looking confused (as confused as a 6 month old baby can, anyway).
       They started about a week ago, with one or two a day. They've increased until yesterday he had 4 in the morning, 10 in the afternoon and another dozen in the evening. We first just thought his neck was fatigued from holding up his big head (all our kids have big heads, poor kids). But then he started doing it when laying on his back as well.
       So we took him to the Primary Children's Hospital, and they did an EEG test. No conclusive results were found concerning seizures, but his brain waves were abnormal. So they decided to keep him the night and do an MRI in the morning.
       The MRI showed less myelination development (those myelin sheaths that cover the nerves) than he should have for this age. Also there were two nerve clusters in the frontal lobe area (they usually spread out more). They think the clusters might be causing the 'seizures', but don't know. A few more tests were ordered, and we're waiting the results for those and will be taking him back Monday to get one more done.
       In the mean time, he's home and they've got him on an anti-seizure medication to see if that stops them.
All in all, he's healthy and happy, we'd just like to know what disorder (if any) he might have, so we can help him more.
       I feel bad for those for whom this sort of thing is dropped on. We've known since part-way through the pregnancy that things weren't completely right, and have had time to come to grips with it. We're just so thankful he's healthy. We love him more every day and know that Heavenly Father is watching out for our little guy.
       Thanks to everyone for the 'well-wishes' and prayers. We love you all.

chromosomal test results

       We received test results from our baby's Chromosomal Micro-array test.  They indicate that he is NORMAL.  yea!   It still leaves us wondering why we found the extra list of symptoms for Trisomy 18 after he was born, why he has some of the symptoms, and why we felt like we were supposed to get the extra test done.  Who knows!  I still hesitate to get my hopes up until some of the symptoms clear up, but it is great news!  Now he just has the kidney test to go through next week. Poor kid!  He has already been poked and examined so many times in his first 2 months of life, we sure love him though and are so grateful he is in our family.  
---mom

2 1/2 Weeks Old!

     Updates? We scheduled the big radioactive dye kidney test for mid July--there's a chance it will resolve itself by then, so here's hoping.
     We keep running into problems with the massive chromosome test (multi array). One minute they say they don't have enough blood, the next they say it's fine. Now they say they don't have enough again. Honestly, we don't know if we'll keep trying. We felt good about doing it originally, but don't feel it is as necessary anymore. Don't get me wrong, we'd still love to rule out other chromosome issues, but it's not as high a priority right now. We'll see how we feel after the weekend.
     So, how's he doing? Well, he's eating, pooping and sleeping. Oh, and peeing. (Can't forget that) He still sleeps a little too much, and it's hard to get him to eat enough since he falls asleep as soon as he starts eating, but we're feeling more comfortable with how he's responding and stuff. Though he still struggles to breathe some times. It's almost like an asthma kind of wheeze, but if he calms down and doesn't stress about it, he does better. (ever try to get an infant to relax and not stress about the fact that they feel like they can't breathe?)
     Mom is an amazing trooper. Some nights she has to wake him up to feed him, other nights he's up every 1 1/2 to 2 hours to eat. I am constantly in awe at the sacrifices she makes to keep our baby healthy. Somehow she keeps on going. I get four times as much sleep, and I still feel like a zombie some times.
     Many thanks to everyone for your prayers and concerns. What an amazing outpouring of love we've felt. Love you all.