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Tuesday, October 16, 2012

Q&A time!

 We had one of these www.bealift.co.uk for a long time - the long red handle lifts the seat up level with the bath edge or lowers it into the bathtub. I wonder if it's available where you are? Made a big difference to my screaming back.
You know, I'm not sure if we have those here, and I can't quite tell how it works. The only other reason I don't like bath chairs is because usually they are out of the water, and I don't want Jax to freeze to death while taking a bath! The only ideal situation I can think of is a higher tub, but I've never seen those before!

 You are super-brave to have read the comments on that article. I avoid them like the plague.
Actually Becca, I avoid them to! I just hate reading ignorant people's comments. The only ones I saw were the ones on that first page that I clicked on from Facebook!

 I'm reading your post about Jaxson's story and I was wondering if you sued the hospital for letting his glucose drop to 0 (which I believe is what caused his brain injury). I found that especially horrible - were they not paying attention?!
First of all don't worry about offending me. Almost every single person that hears about the brain injury asks this question! Yes, it was a big boo boo, it was not something that happened because Jaxson was so sick. They really weren't paying attention like they should have, in the ICU with his nurse only having him as a patient. The injury is whats called a hypoxic ischemic injury. Honestly, even with my background, I had no idea what kind of brain damage could come from glucose dropping like that. One of these days I'm going to do a video with Jax, because I'm finding that even a lot of my friends don't understand truly how delayed Jax is from this injury. We were told by cardiology right after if happened to take him off life support, that they could no longer fix his heart. It was horrible! But I really can't discuss anything that happened afterwards. Sorry! 

this is fantastic, oh how I would love to take Junior to Disney one of these days
Oh Heidi, you totally should! You can stay with us, we have plenty of room here!

Do you think that maybe he just has a plug deep in his lungs that gets moved around? Lillian had that when she had her trach.
No, unfortunetly it isn't a plug of any kind. He is usually clear as a bell. He's been known before for actually collapsing his airway and the trach tube too! Hopefully these new, bigger trachs will do the trick!

school? wow! that would be huge for Jax!
Your telling me!! As soon as his old IEP comes in the mail, we are getting him signed up with the school district. Even now thinking about it gives me the chills! I'm so excited for him, but so scared as well. I would never be able to send him to an inclusion school, only a school for severely delayed kids. The reason being is with all the kids wheelchair bound, there is no running around touching everything, and the staff knows that these kids are fragile, so everything is kept clean. Although the first time Jax gets sick, don't be surprised if I yank him out!!

Remember friends, if you haven't "liked" our Jaxsons blankie facebook page, please do and help us spread the word!!

4 comments:

  1. Thank you for your blog. I needed some smiles today and your kiddo's happy faces did it for me.

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  2. Love your Q&As! I hope you can find some sort of bath-time solution soon!

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  3. i think it's awesome that you're looking into school for jaxon! he'll LOVE it!!! i teach a great group of preschoolers who all seem to be about jaxon's cuteness and developmental level - i can tell you that all the classroom staff (and nurses) have such a great time with the children! unfortunately, no matter how much we wipe things down with clorax wipes, once a child coughs, it's just in the air. kids get sick the first year until they can get used to the other kid cooties. BUT, the development of so many skills (increased alertness and greater awareness of cause/effect are the two biggies) is priceless!

    you've got yourself such an awesome little guy (and girl, and bigger boys too!). thank you for sharing him with the world! i can't wait to hear about his adventures at school!

    have a great night!

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  4. Higher tubs? We have those too! Height adjustable and with a side which opens so you don't have to lift over the edge. I'm not sure if the makes travel across the pond but over here, they are made by Kingkraft, ARJO and another one which escapes me just now.

    The bealift - how it works is that the child sits in it like a bouncing baby rocker seat - bottom rests on the bottom of the mesh (centre of the bath). As you move the lever over the mesh lowers into the bath so the child's bottom is on the bottom of the bath and they are reclined at an angle of between 30 and 45 degrees (depends on depth of tub). Then when bath time is over, you move the handle to the other end of the bathtub and it lifts the centre bit of the mesh back up again so the child is lying flat at the sane height as the side of the bath. You still have to lift from there, but it's not the same as that back aching scoop from the floor.

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