27 April 2011

One to remember

We had an eventful Easter this year.

A rarity: The whole family!
One of Ian's friends stayed the weekend with us.  And after doing all the normal Easter things: dying eggs, church, baskets, lunch, etc... the boys and one of my girls (Shawn, Ian, Chase and Rylie) wanted to go dirt bike riding and 4-wheeling in the woods for a while. We delayed the Easter egg hunt until they got back. But, they never really got back.

Rylie smiled for me.

Ian and Chase not smiling for me.
Before the whoopsie in the woods.

Shawn had a minor accident in the woods, way back in the woods, and by the time we got the bikes out, him out and back to the house, the day was shot. And to top it all off, Shawn had to go to the ER because he had three good size gashes in his right knee that needed sewing up and he was pretty loopy. Actually, really loopy.

Checking out his basket.

Ewww. The ball is squishy and feels weird.

Liam's goofy grin.

Found all the eggs!

Oooh, Is that my basket?
After this photo and that grin, he smacked it off into the floor.
We only spent 2 1/2 hours at the ER. They stitched him up and told him to stay off of his leg for 3-5 days until the swelling went down. Aidan was pretty upset because she didn't get to have her egg hunt but we promised her we'd do it on Monday. Which we did. So it's all good. =)

Every year I post the comparison photos of Liam with his original basket that he could lay in his first Easter home. It's amazing to see how little he was and look at that basket knowing he fit inside it that first year.

Well, even after all the hoopla it was a pretty fun Easter. Memorable for sure.

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22 April 2011

Top news of the week

*My easy going, placid child, has been replaced by one that realizes the significance of whining. As in, 'If I whine long enough and loud enough someone will come."  Even when we are right there. What he wants I have no idea since he can't tell me. But he is now whining to get some sort of attention from us. That's a good thing, right? RIGHT?!

*We had a GI check up this week. Liam gained about 3 grams a day since our last appnt which is okay. We wanted 5 grams a day. But there's no telling how much he had really gained since he lost so much with that stomach virus. It was a good appointment in that the NP said she thought Liam was doing fine on the four cans a day (even though he vomits once a day still) and that since he is gaining and doing well there's no need to push it to five. Whew! And she echoed what I felt about the fundoplication (wrapping the stomach when you have severe reflux and/or aspiration issues) in that Liam should not have that done since he is so sensitive and throws up so easy. It was nice to hear that because I have wondered if we made a mistake in not getting it when we got the g-tube placed last year.

*We got to see Liam's vision teacher this past week (we only see her once a month) where he impressed her with his knowledge of the Interactive Alphabet on the iPad. She loved seeing him work it and follow my directions. Our vision teacher has been great because she's the one constant in Liam's life who has been with him from the beginning. She has seen Liam take off intellectually and is constantly thinking of how to move Liam forward.

*We only need to raise $5500 more for Liam's treatment fund! We are still taking donations, selling tees, and praying that we will have the money by the end of June! Know anyone willing to help? Please send them our way! I can tell them how much it sucks to not have insurance cover the procedures, intensive therapies and alternative treatments needed to try to lesson your child's disabilities.
      And a big thank you again to everyone who has donated! I think I've personally thanked everyone but if I haven't, it isn't your fault. Some days I just don't have it all together!

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18 April 2011

Liam's Volleyball Tournament

We had Liam's volleyball tournament Saturday and it was so much fun! We had such a great turnout with 8 co-ed teams ranging in ages from 12 to 60!

We couldn't have pulled this off without the help of some amazing people who not only volunteered their time but went out of their way to make sure that everything would be in place so it all would run smoothly. Thanks go to Brandi for getting the awesome medals and for getting the referees (who volunteered their Saturday) to make our tournament official! Thanks to Jen and Hannah for running the concession stand, getting the food,  and bringing the monster cookies. Thanks to Darryl for keeping score, setting up, emceeing, and praying for it all. And a big thanks to Mike who got the volleyball rolling to get this tournament set up for Liam in the first place.  To the meetings, phone calls, planning and coordinating...we couldn't have done it with out you!

Team Liam came in fourth, which I was bummed about because I really wanted one of the cool medals with Liam's name on it. But we really had such a great time with everyone and couldn't have asked for a better group of people to play with!

Shawn brought Liam later in the afternoon so people could meet our little miracle. I had been asked to speak that morning before the start to explain a bit about him and what we are doing so it was great for people who hadn't seen him yet be able to put a face to his name. Liam enjoyed watching the volleyball and hearing the whistle and giggled at getting attention from everyone.

By the end of the day after all the donations were in we had raised $1500 for Liam's treatment fund!

A big thanks again to everyone involved. From the people who came just to watch, who donated, who bought tees, who bought food and all who played, we sincerely thank you. It was such a blast. Let's do it again!

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12 April 2011

Virus is a Latin word which means, "Your guess is as good as mine".

So Liam's vomiting spell turned into a nightmare that we are still trying to wake up from. He apparently caught some virus that just destroyed his tummy. It has been brutal. And I know first hand. Because I got it too.

Liam continued to have trouble keeping anything down on Saturday and kept up the same issues at night with his pump. I finally just didn't even mess with feeding him at night. He was throwing up too much and it was dangerous to keep trying to get food down that was obviously not going to stay.  And I knew he had something viral going on and when you are that sick you don't feel like eating anything anyway.

Sunday morning I woke up feeling fine but within an hour I wasn't feeling right. The rest of the day just went downhill and by that afternoon I couldn't even get vertical. Luckily all Liam wanted to do was sleep but I felt bad because I felt like Liam kept falling asleep because he was bored since I wasn't able to play with him and entertain him like usual. I even called my mom over to help me that evening to play with him and try to keep him up but even she couldn't do so. He was only awake for a couple of hours on Sunday. He literally slept all day long.

Sunday was really tough on me so I knew if I had just a smidgen of what Liam had he was in pain and food was the least of his concerns. I could not eat anything. I had no energy and it took everything in me to eat half a container of yogurt.

Monday morning, after another night of no food for Liam, I woke up at 6 am with back pain that wouldn't go away. I got up to take some pain pills, made it to my bathroom and then apparently passed out. I remember coming to with my face hurting and trying to figure out why I was bleeding when I realized my face was smooshed against the seat of the toilet with the iron free-standing toilet paper holder knocked over and pressed into my eye and forehead. I am dazed and trying to figure out what is going on when I realize I must have passed out. I rolled away and just laid on the cold bathroom floor trying to get some sense back into my head.  I had a nice gash and lump on my forehead and I busted my lip.

I can laugh about it now, but at the time it wasn't very funny. I guess I was just so weak from not having anything but gatorade and yogurt the day before that I got low blood sugar/blood pressure when I stood up.

Luckily I got slowly a bit better as the day wore on. It's Tuesday though and I am still feeling it and Liam is too. It takes no effort on his part to throw up right now. I took him in to the ped today just to check about dehydration and his weight loss and she said he looked good. And his weight was only off 1 ounce from the last visit. So, all the weight gain we'd made getting him to 28 lbs he is now back slightly under 27. But still, it clearly wasn't as bad as I thought it would be! She said rotavirus is going around rampant right now along with several other things. Whatever it was, it's been brutal.

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09 April 2011


Last night was rough and I have no idea why. I'm exhausted. Liam gets milk pumped into him while he sleeps because he can not tolerate the volume of food they want him to have during the day. He already vomits now every day again since we upped his amount back in December (after going for 6 months vomit free).  And sometimes he will throw up while he's asleep. He'll wake up and start to whine or cough which I know means somethings coming up.

But last night was different. He vomited within 1 hour of starting the pump, at 11:30. Usually if he does throw up he doesn't usually do it until around 3 am. I kept the pump going but within an hour he threw up again. I shut it off at that point to give him time to rest since something wasn't right. But then he threw up again at 1:30, 2:30 and 3:30, all while no food was being given. He was mostly throwing up mucous and spit since there was no food left.

He finally felt asleep after the 3:30 spell and is still asleep now at 9 am. Which means we are off today on our feeding schedule already. So, yesterday and today he won't receive the amount he's supposed to have. In fact most days he doesn't anyway since he vomits everyday now. But we are really off now.

I'm just hoping whatever happened last night is not a precursor for the things to come. Vomiting everyday is not normal, but it's our normal, and I'm beginning to wonder if our normalcy is anomalous.

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08 April 2011

Working out in the stander...

while watching his favorite video: Brainy Baby Right Brain.

The blank bands on his arms are writst weights to help him try to better control his chaotic arm movements. In technical terms it is to give him stability. It does help him when he's working on switches or the ipad. But in the stander, when he's that excited control is not an option!

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06 April 2011

Simply Saying Yes or No

My primary excitement in getting Liam an iPad was to enable him to communicate with us. It has to be frustrating to be asked a question and not be able to answer it except for a smile. If I asked him if he wanted to sing a song he would smile so I would know he wanted too. But other than a smile, there is no way for Liam to reply his likes or dislikes. So the first app I got Liam was simply called the Yes/No HD app. It puts on the screen a red box that says no and a green box that says yes when they are touched. You can also make your own buttons and record your own voice to them but for now we are only working on yes and no.

Today my homework from our private SLP was for me to work on vocabulary with Liam. Because Liam knows cause and affect, having him touch the screen is no big deal. But having him meaningfully touch it to answer our questions is something else. He is getting the hang of it. For instance, this morning we asked him if his name was Liam. He said yes. Then we asked if he was happy and he said yes. We asked him if his SLP was named Ms. Becky and he said yes. Then we worked with abstract photos of a ball, cars, and a cat. He did about 50% on those. When we would ask him if the cat was a cow or the cat was a duck he would sometimes say yes and sometimes say no. Part of that could be that his coordination to hit the right buttons are off and it could be that he simply doesn't understand yet what yes and no mean.

So my homework is to work with him several times a day on the concept of yes and no.  I am to ask him if he wants to get in his stander or out of it, if he wants to read a book, sing a song, etc... And I am to work with the vocabulary, e.g., "Is the apple blue?"  

If I could pair the yes/no app with something he really didn't like it would probably teach him quickly. Say he hated to have his hair brushed and we asked him if he wanted to have that done,  whenever he pressed yes he'd get exactly what he hated teaching him yes and no pretty quickly (hopefully). But I can't think of anything that is uncomfortable to him or that he doesn't like. He's so easy going. If you have any ideas on what we could do or what worked for you please let me know!

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04 April 2011

Playing with his iPad

This video is longer than I thought but I was just so proud of Liam that I kept recording. Please ignore the gagging portion of the film. =D
Untitled from Jennifer McIntosh on Vimeo.

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