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Archive for October, 2009

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He demonstrated it once perfectly.. then I asked him to repeat the task again and he was too excited and got it wrong. Several hours later I asked again and he got it right! When Nick got home he asked Luke to demonstrate it and he did it again!!

What you might ask is this spectacular skill Luke has now? Color recognition!

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Up til now Luke hasn’t been able to differentiate colors when asked so I just continued to name each color as we drew on paper, played with balls, or his color sorting bears. I figured maybe one day it would sink but I never really pushed it on him. It wasn’t like we would sit in his ‘little school room’ only focusing on color naming. I know at therapy they must’ve been working on it too. Between all the therapies Im sure he gets lots of that.

I had *no idea* he could do that. Last night my mother in law gave Luke a set of Mickey keys that have grips at the top in red, green, and blue. I just happened to ask him which the red key was. He pointed at it. I grabbed him up & hugged him tightly and was pretty well flipping out. (Side note: We try REALLY hard not to do this because it typically scares him & then he wont participate. Its just hes never done that before.. I couldnt help but celebrate) Since the blue & green we similar shades in a way I asked which the blue was. He got it right! Again, outrageous celebration ensued. He didnt seem bothered by this. So I asked for the green one and he showed me! Can you imagine that??? I was SO very excited!

Slightly disappointed when he couldn’t repeat it again. I thought either I freaked him out by all the suffocating celebration or it was just a fluke. Those happen a lot.

So, as it turned out I probably just freaked him out & threw him off his game. Dada was very proud, as you can imagine when he came home & Luke promptly pointed out the colors when asked for each one.

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Ahh… it’s so good and refreshing to see progress. New skills are so few and far between that ¬†grand celebrations are required!

Also, he’s becoming very attached to stuff animals such as his fluffy puppy (Thanks Emily R.. he’s still loving on his fluffy puppy you gave him) and his Donald Duck (or rather mine from 20 yrs ago). He’s been giving whatever object of affection is at that time lots of pat-pats and also I’ve seen him sneak his sucker to Elmo. He is quite a good sharing kid to be an only child and who isn’t around a bunch of other kids all the time.

Oh, and I *think* he tried to say dog. It was more of a ‘dawwwh’ as he picked up his fluffy puppy.

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So as you can tell he has a really great day. He was super verbal and apparently while I was gone tonight being really social. He’s also beginning to answer ‘uh-huh’ more appropriately also. Previously, he has used that phrase usually if he just wants something and we name whatever it is he wants. But today, we noticed we can say something like “Luke, do you love mama?” His reply “Uh-huuh!” With a sweet upward inflection. It’s precious. Ill try to get a video of it. Nick noticed that he’s been pointing at things and saying slowly ‘da..da’ as if he were naming something. We know he wants to say mama because hes seen me pull up at KS to pick him up and they told me he said dada. I know that HE knows it was my car.. he jsut cant say mama and everything comes out dada. But, hes trying to say things.

Good day. It’s was a good day.

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That’s how long Luke went with out any seizure activity.

After our vacation in July Dr. Sharp recommends we start the systematic process of weaning Luke off Phenobarbital, much to our dismay. I had taken Luke in earlier in June and he gave us written instructions on how to do the wean and at what week we drop to a certain level and how long to keep that level there. We had many reasons to not do the wean and the doctor said if we wanted to badly enough he could just switch him to Keppra and wean the Phenobarb but he didn’t want to try that just yet. He thought Luke was good to go since it had been a year without any seizures. The doctor also was going to allow me to do the 4 month wean instead of the 2 month process.

But, right before we began, I decided on my own that I would do the 2 month wean. I realized I would rather it be ME that deals with the seizure IF he was going to have one during the wean. It was the end of my summer and if he was going to have it happen I would rather just get it over with before he starts being out of my care more at night. It was a tough decision to make but both my mom & Nick were very relived to hear my reasoning behind it.

We were scared to start the wean but we knew it was for his best interest. We knew the Anti-epileptic drug (AED) he was on now made him high as a kite, and developmentally, it was slowing him down. Dr. Sharp wanted him off the meds regardless. If he needed an AED it would be Keppra. But with a new med comes the uncertainty of it working for Luke and how it reacted with his body. Phenobarb worked so well for him. He only had breakthrough seizures in July of the previous year so that seemed to be *his* drug. But man, it really had it’s side effects.

The upside to weaning was that Luke would possibly begin to develop more without the barbiturate in his system. Dr. Sharp couldn’t guarantee he would take off like a rocket but that, hopefully, slowly he would begin to gain progress. We’ve been waiting so long for certain developments so we were ready to see improvement in that area. But one thing I was certainly looking forward to was seeing who my Luke was off mind-altering drugs. Luke began Phenobarb at 6.5 wks. At the time we began the wean he had been on it for 92% of his life by then. I just felt like I didnt really know Luke. I wish so badly sometimes I did get to see what Luke was like and I wonder if he would generally be the same or if he would be very much different?

When I’ve mentioned this before people try to convince me that Luke is Luke no matter what. Heh, true, but just seeing his personality change from one drug to the next has been drastic (in our opinion) so what would he be like without EVER having been on these drugs? Around family he’s typically more outgoing than any other time so I kind of feel like those family members don’t see that Luke is so delayed in some things. They’ve got those sweet rose colored glasses on. This isn’t bad though (since we love y’all so much).

Overall, people that meet Luke in the grocery store just assume he’s pretty shy because he looks so normal. If you didn’t know he couldn’t talk and saw him play a little you might think he was totally normal and was just taking in his surroundings. It’s easy to be with Luke and see him play and fall into a comfy little bubble involving his much needed routines, his excellent non-verbal communication (without signing), and his mediocre skills and that’s you’re normal. Then, you get around his age peers and it blows you away. Every time.

We’re so happy to watch Luke’s friends advance and display all these cute, impressive new skills. It’s such a joy to see the new things they like to do. I have to admit, when Luke does something age-appropriate it’s all I can do to not jump and scream for everyone to look at him just so they can witness him doing something appropriate.

It may sound like I’m stuck on milestones or development … maybe I am? At any rate… check back soon for Part 2.

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Back in early August we took a trip to San Antonio to see my nephew Justin graduate Air Force Basic Military Training. It was pretty fun! Luke and I rode down with my sister, Melissa. We got to see Justin and hang out with him a lot. Also, my parents surprised me by having Nick take off work and come down too! I had no idea he would show up there! Such a good surprise!

We had some *long* days and Luke did so amazingly well. Partly due to the fact that we just were on full throttle all the time. I think if we had slowed down at all he mightve taken a nap! He did sleep a full night for the first time *EVER* down there.

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We got to spend a lot of good time visiting with Justin and the rest of the family that got to come down.

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Luke had a good time obviously..

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Justin is right smack in the middle! We’re all SO proud of that boy!

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Justin and his mama Melissa. This was the first time she had seen him in a couple months!

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I’m not sure why this isn’t rotated but.. tilt to the left! So cute!He wore these all around the River Walk in SA!

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The whole crowd of us headed to the Alamo for a nice leisurely tour on afternoon.

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This has to be my favorite photo from the trip! If you can’t tell we all have giant smiles on our faces!

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Rio Rio was a nice, over-priced, trendy Tex-Mex joint we ate at. Good food but nothing can beat some nasty, greasy, cheap El Chico’s Mexican..

After we tearfully said our goodbyes my sister and I shopped our way back to town. We had such a good time stopping to shop at the outlet malls. The highlight however, was Ikea. We both were newbies to Ikea and were in total shock & awe. I need to go back again some day..

Overall, the road trip went fantastic with no small thanks to Mr. DVD Player. We broke down & bought a strap on player for the car ride. Luke isn’t a fan of the car seat and we find we still use it more than we ought to. But a scream-fre car ride is always nice.

We were so ready to be home after that trip! We missed dada! That was a long time to be away from home for Luke!

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July 4, 2009

Here I go playing catch up…

We did have any stellar, big plans this past fourth.. Luke wouldn’t have done well with the fireworks. Which, in hindsight, could’ve been SO BAD because we almost went to see a fireworks display.

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Dada colored with Lukie

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Took him on a walk

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Then we went to great grandma & grandpas house!

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The water was icy cold!

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Getting ready to grill!

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Chillaxin..

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Eric!

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John!

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Mamas lil firecracker!

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After eating at the great grandparents house we stopped at Auntie & JPs house to shoot fireworks. Bad idea. There was a cute little Luke sized meltdown!

But we still had a good day with family!

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If you’ll noticed there is a nifty little widget on the right side of this page. I decided to add a widget to help support the Childrens Miracle Network. Why not help kids who are in need? Especially when it’s as easy at this.

Here’s how YOU can help.

1. Click the SocialVibe badge to help now!

2. Colgate will task you with a few things to click on.

3. Hit submit!

No where will you be asked for your email address, phone number, or ANY personal info. Hot dog! This is seriously -no strings attached- fundraising for a good cause!

After you do all that you will be asked to crate a badge of your own you your blog! Do it. It’s a good thing. Colgate is giving cash to the Children’s Miracle Network for every click the badge gets with the follow through of the simple task it asks.

Seriously, this take less than a minute to do. LESS THAN A MINUTE! You can read blogs, surf Facebook, or blow your own nose in more time than that! So, I challenge you to click… do it… click it. You know you want to see what the cute, mildly amusing task is…

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So a lot has happened the past couple months. If you’re my friend on Facebook then you know the story. I just haven’t felt like blogging about all of this while we were coping with our own emotions. Blogging kind of exposes you and I wasn’t ready for that.

I know it’s just seizures and people lead normal lives just fine with them but …. oh wait. Here I go talking about it. I didn’t want to do that just yet.

The point of this post was to just get it out there that I will begin blogging again and also hopefully this will motivate me to begin. I wanted to blog to kind of keep a journal going about Luke’s milestones, medical info, and all the boring day to day stuff. I don’t want to get too far behind!

Here we go! Expect a post soon!

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