speaking of hippotherapy...

I was inspired by Melissa's pics of Joshie on the horsie to post a pic of Sammy's own brand of hippotherapy with my sister Mary and her horse, Amber. We went to the barn the other day..it was SO hot amd humid, but Amber was a trooper! She's a sweet horse... Luke took a ride, too...he's been riding her since he was 2!! :) They love it!! (Sammy cries when we take him off!)

Happy Birthday, Melinda :)

Happy, Happy Birthday, Melinda!! :)
Hope you had a fabulous day.....(sorry this is technically after midnight...) ;)

Hugs,
Ellen, Luke, and Sammy :)

My 1st blog post....ever!!

O.K. girls, bear with me. This will officially be my 1st blog post ever!! YAY!!! Like Chrystie, I don't *really* have lots of news with Joshie. He's in summer school until Wed. of next week then he's off until Sept. We're quickly approaching his 5th birthday (the 31st) & I STILL am having a hard time wrapping that around my brain.....where did the time go??

He's LOVING Hippotherapy & I really can tell a difference in his core strength since he started. It's really gotten alot better & his 1-hand supported walking is really improving. I think we still have a ways to go to the ever elusive independent steps but he is on the right track.

That's about it for us. Mia is almost 18 months & is SUCH a chatterbox!! We call her the little monkey cause she climbs on EVERYTHING!!! She really looks out for her brother is constantly smothering him with kisses (which he's not really into ;)

That's about it with us...taking the kiddos to Disneyland tomorrow to celebrate my nephew's & Joshie's b-day!! I'm sure I'll have a TON of pics to share!! For now, here is one of Joshie on his horse, Peanut & another of him at the park on the swing...his FAVE!!! Look at that smile!!!!

This n' That

Oh girls. Accept my apology for my serious lack of communication lately. Things have been busy, and for some reason, my posting motivation has been really low. I have a hundred things to say, both to you and on my personal blog, but regurgitation from head to screen is sometimes overwhelming and unattractive. So, basically, I have no good excuse for my absence. But, I've been reading and loving, I promise!

I'm not really sure there's much to update with Ellie/us. Things have been pretty status quo for Ellie in the mobility department lately (maybe that's one of the reasons I feel unmotivated to post anything). It's, of course, frustrating. But, she's happy, and hopefully honing the skills she HAS learned, so these "down times" aren't completely useless. Right?!

On a positive note, Ellie's speech has been improving daily it seems. She's still well behind for her age, but she seems to add a word every day, and she's copying our sounds a lot better. I love seeing the wheels turn!

I thought of you girls the other night, because I wanted to rush to the computer to vent, knowing you were the only ones who could REALLY understand. Here's what happened:

DH and I help lead our senior high youth group at church. We've been very open with the "kids" as to what's going on with Ellie, and they have really grown to love her. The other night, we had a bonfire at our place for the kids. We also invited the "newbies" who will be freshmen in the fall. Of course, they were new faces to me, and vice versa.

It was time for me to put Ellie to bed, so I was making "the rounds", saying goodnight to all the kids. When I got to a group of new, unfamiliar freshmen, I told Ellie to "say night-night". One of the boys replied to her with, "Good Night, Golden Retriever!"

At first, I thought he was referring to the color of her hair. I thought it was a little odd, but a LOT of odd things seems to come out of the mouths of 14-year-old boys! BUT, the boy continued,

"I once had a Golden Retriever dog who drooled a lot too. She reminds me of that dog."

GULP.

I was so taken aback that I didn't know what to say. The ironic thing is that I had just been thinking that Ellie's drooling was improving! Of course, she ALWAYS drools more when she's tired, because it becomes difficult for her to keep her tongue in her mouth. Since she had already been up two hours past her bedtime, she was REALLY tired by this time. So, yes, she was drooling.

I didn't want to make a scene (and I wasn't sure how to respond to this boy), so I just gave him a disgusted look, and went into the house to put Ellie down. I really *do* think it was just a 14-year-old boy who didn't realize what he was saying. Because he is unfamiliar with us and our family, he didn't realize that there was anything "different" with Ellie. I'm going to give him the benefit of the doubt...for now.

Of course, it made me think about the future and how many stupid comments Ellie would have to field in her lifetime. SIGH. It makes me want to envelope sweet Ellie in my protective arms forever. It brings tears to my eyes to think of how tough our kids' skin will have to be.

I've also been thinking about my reaction to this comment, and I wish I could go back in time and change it. I wish I would have said something to the boy. Unfortunately, I have a sneaky suspicion that I will have more opportunities to respond to rude comments (from other people) in my lifetime, so hopefully this will prepare me for a good comeback. People need to realize that they can't go shooting off their mouths.

Anyway, this has become a novel! All this to say "hey!" to you girls!!

Chrystie (Ellie 3-15-05, SDCP)

Hearing test

I posted this on NBBC also, but since most of us are not there anymore, I thought I would finally give the blog a try (I hope I do it right)! Addison had a sedated ABR (hearing test) on Mon. it was a such a mess, she would not go to sleep after they gave her the medicine to sedate her, they had to give her a second dose and she still fought me so hard to go to sleep. She ended up crying herself to sleep. I was convinced there would be no hearing loss, well I was wrong, she has mild to moderate loss in the left ear, it just broke my heart to hear this. Now we need to see the ENT and see what he says. We have been told she may need a hearing aid, and on the other hand we have been told that with just moderate loss in one ear she may not need anything, who do I believe? Anybody out there with experience with hearing loss/ hearing aids? She is only two and I really don't think that at this point she would keep one in. Any words of wisdom?

Kara

If you know any CP mommy's near Toronto Ontario

Tell them to print out this flier and get their butts down to the Ontario Federation for Cerebral Palsy office! They are giving out FIVE free toys to every child with Cerebral Palsy who goes in there this Friday and Saturday WOOHOO can you guess where we are going this weekend? lol Brett Carleton and his family donated a crap load of toys to them to give out, I thought it was wonderful! Nicholas is so excited he can't wait to get his toys, they aren't adaptive or anything they are normal everyday toys so I have no idea what he'll end up getting! By the looks of it though they have a lot of educational toys (my favorite kind!) so I hope he gets something that will keep his interest lol

http://www.ofcp.on.ca/pdf/toy_flyer.pdf

Well I hope your all having a wonderful week so far
-Liz

Nicholas

Well turns out Nicholas's head ache are just going to be a normal part of his CP, after 14hrs in the emerg and one CT scan with dye later we were discharged with a "there is nothing that can be done, the attacks are too short so if you give him anything for it by the time it kicks in they will be gone already, the only thing you can really do is comfort him through them" HOW DEPRESSING? poor guy has been through a lot of pain lately between his legs and his head aches, Monday nights (3am) attack was the longest so far it lasted until 4:18am =( it really sucked the life out of him too he has had no energy at all since it. This scan was depressing though because with the dye the could actually see damage and even knowing he has some having a doctor come in and say "we can clearly see his brain damage but nothing worrisome that would be causing the pains" is rather depressing. It's the first time we've been told that they can see it =( I cried like a baby when we got home "brain damage" is not what I want to hear when it comes to my little guy...Cerebral Palsy was hard enough!

and hey we got some interesting letters from Gerber Life too, because Nicholas's legs don't work right he was denied and so was Matthew who is PERFECTLY HEALTHY! I knew Joey would be denied but he has diabetes and it's almost impossible to get him insurance lol not that I really wanted it but I did want the freebie they were giving away with their quotes. Turns out though if they deny you they don't give you one hahaha JERKS! I wrote about it on my blog if anyone wants to read it, though I did write about his cognitive abilities in my rant which might make some of you a tad upset since he is advanced in them so only read it if you want. (click his name above)

-Liz

Emma and her tricycle...

Emma is doing very well with her tricycle this summer. If she is good, she can ride until her heart is content. I wanted to practice adding a photo, so here is one.

Oh Hannah

So if its not one thing it's another. Hannah likes to drop her sodium when she is sick with no real reason. So her Dr is out of town right now and she has to get sick..... after seeing a dumb Dr and daily lab draws she was put in the PICU on friday for low sodium. Her sodium dropped to a bad 122 normal is135 and higher . I was told if it gets in the teens she would start having seizures . The only good news here is we might have a reason now. The Dr things she has both Cerebral salt wasting syndrome and SIADH . now she is still on daily lab draws tell her sodium stays up and next time she gets sick we have to watch her I/O and start her on salt and drop her intake my half.
Trina