Stupid, Precious, Fragile Hope

I know I am dumb to be saying/writing these words out loud. But, we are so close to seizure control. Closer than we have ever been since Lincoln started having breakthrough seizures at 5.5 months old. I am nervous, and stupidly hopeful. I just know that this will end in dissapointment, and yet, here I am hoping that this combination of medications are finally the answer.

His drop seizure has not been seen for the past 3 weeks, and we are cherishing this break. This was the seizure that scared him, made him cry, and often caused him to bash his head into our tile floor.

And his Infantile Spasms have decreased to 0-1 per day. Which is just wonderful.

This release from his frequent seizures has seemed to free up his toddler mind. This too is wonderful, and I am really (stupidly) hoping to see a leap forward in development along with this...if the seizures remain the way they are for long enough. One drawback, however, is that because he is non-verbal all of his communication is done through crying. So we are dealing with a manipulative, jealous, tired & cranky almost-two year old. And I am having to try and figure out who this new person is, what he is trying to tell me through his cries, and get some kind of a daytime/bedtime routine worked out. Most parents would already have this down pat by now with their toddler, but with Lincoln it is almost like we just fast-forwarded from baby to toddler, so we are needing to learn everything we have missed in the past 1.5 years...and he is needing to learn how to communcate his needs/wants to us as well. Gone is the sweet blue-eyed, blond-haired angel, beaten-down by his frequent seizures, and in his place is a wonderfully opinionated little boy, who is finally (hopefully) taking in the world around him.

As you can tell, I am hoping that this change is permanent and that Lincoln may finally be free to learn and retain all that he can. I just know that I will be devastated, as I have been in the past, if and when his seizures return to steal my lttle boy away again. Here's to hoping that if that does happen, it isn't for a long, long while.

To Catch Everyone Up (in 30 pictures or less)

Quick Opthamology Update

Lincoln visited the opthamologist yesterday to check for lesions or hamartomas. We have never seen them in the past, but we were just making sure. Also some of the anti-seizure medications he is on are know to impare visual field or cause glaucoma, so we were checking for that also.

Well...according to the doctor his vision is very stable, and she sees nothing in his eyes to be concerned about, so we are being released for 1 year! Yay for small victories!! :)

Weekly Weigh-In

Our weekly weigh-in (probably will become more like an every-other-week weigh-in). I stopped counting calories for now, seeing if we can mantain his weight without such close vigilance. He was down to about 30.5lbs last week, but is up again to 31lbs 2oz as of last night. So we are hanging in there...still relying on his bottles on straight half and half for the maority of his daily caloric intake. Hoping that he becomes a better eater soon. He has completely stopped feeding himslf again, so that is dissapointing, but I imagine he will get it someday. So for now, we are just hanging in there.

So our weights for this week:

Lincoln: 31lbs 2oz (-4oz since 4/6)
June: 9lbs 9oz (+1lb 6oz since 4/6)
Tina: +21lbs (-8lbs since 4/6)

I joined Weight Watchers last week, and am trying to get rid of all of my pregnancy snacks (and trying to not buy any more), and also trying to limit myself to 1-2 sodas per day starting this week. Monday = Success. We will see how the rest of the week goes. :) I am hoping to reach my goal weight by July or August. It will take a lot of hard work and will power to get there.

One Month Old!

June is now one month old! It is hard to believe how quickly this time has passed, and also how quickly she is changing from a newborn lump of goo (as Andy likes to say), to an actual baby with movement and a personality. Crazy!

Lincoln is still interested in her. He smiles at her a lot and laughs at her when she cries. He cries when he sees me holding her and he wants some mommy-time. I think it is all so adorable. I think it will be fun when she starts to interact with him as well.

June celebrated her first month birthday with a cold. She has been sick (along with the rest of us) for the past week. She is mostly congested and has developed a love/hate relationship with the snot sucker. Luckily she hasn't developed a fever at all, and generally seems to be handling the cold pretty well, and is hopefully on the mend now.

She still spends the majority of her time asleep, and wakes every 2-3.5 hours to drink 2-4oz. She weighs about 9lbs, so she is gaining well, but definitely not as quickly as Lincoln did (he was already 11lbs 2oz at 1 month old). So she is definitely proving that she is her very own person, and we love her to death!











Check out this awesome head/neck strength!! ;)


Stay tuned for more pictures/videos of both of them, taken over the past couple of weeks.

Updates On Us & Pictures

Some good news! We finally got the results from Lincoln's Holter Monitor test (performed March 4-5), and everything was completely normal! No PVC's and no arrhythmias!! Yes!! So happy for this good news!

In other tentative good news, Lincoln has been doing pretty well this past week. He has been down to only a handful of seizures per day, and has a good amount of energy throughout the day because of this. Even if this good time does not continue, as I have said in the past, it is always nice for the small break (both for him and for us). We have learned not to get our hopes up too high or to think too far into the future during these "honeymoon" periods, because these times come and go, for whatever reason. But instead we try to enjoy them while they last.

June is approaching the age when we first started to notice Lincoln's seizures as aberrant behavior, and I find that I am studying June more, certain that some of the things she is doing are seizure-like as well. I always tell myself that I am just jumping at shadows, and that these things are just normal for babies to be doing...but honestly, I don't really know what normal is, I only know what abnormal looks like. Fingers crossed that she is 100% normal, and that I am not purposefully ignoring any warning signs. Although you can be sure that I am attempting to capture some of what she is doing on video, and will show the pedi at her 2mo appt if it still looks funny to me.

Here is June in some pictures & a video. And a close up of Lincoln, because he really likes to study the camera! ;)

Weekly Weigh-In

This was a very good week all around!

Calories:
Mar 30 = 1406 cal
Mar 31 = 1483 cal
Apr 1 = 1410 cal
Apr 2 = 1410 cal
Apr 3 = 1160 cal
Apr 4 = 1495 cal
Apr 5 = 1420 cal

Average = 1398 cal/day! Wahoo!

Lincoln's weight = 31lbs 6oz! (+8oz)

June's weight = 8lbs 3oz! (+14oz)

My weight = +29lbs over pre-pregnancy wt. (-3lbs)

Is it love?

He likes to touch her and look at her whenever we let him, and often these actions result in a big smile from him. I don't know how he feels, but I sure hope that this curiosity grows into love someday. :)







The hand holding and shoulder touching in these pictures was all voluntary on his part. He is such a sweetheart!

The past 2 weeks

June had her 2 week check-up today. She went from 6lbs 8.5oz (25%) and 18.5in (10%) at birth, to 7lbs 9oz and 20.5in (50%)! She is growing like a weed, and eating like a little piglet!! She gets about 2-3oz every 2-3 hours around the clock. We are dragging a bit round the house...those nighttime feedings are hard, especially with a toddler who stays up late and doesn't sleep in much. It was nice having my mom here to help, and let me catch some extra morning zzz's. I am definitely going to miss that!

All in all, June is a good baby so far, and Linc is handling the changes pretty well, so far... :)

Here are some pictures from the past 2 weeks.