Happy Friday! We have a thought on what might be causing Jax to wake up crying at night. All the puffyness in his face and neck is still there, and I guess its in his head to. It may take a couple of weeks to go down. But if he lays flat in bed there is a good possibility that he is getting headaches. Once he's in his swing were he's a little upright, then he sleeps fine. So we are going to prop his bed up with phonebooks tonight and see if this helps. If this puffyness doesn't go down, they may have to consider surgery or a way to open up that SVC vein.
Do you think I can get this boy to look at the camera? No way hose'. His therapist was wondering the other day if some of his not looking at toys is just being stubborn. A downs kid stubborn, no way, ughm. (Other downs kids moms are laughing)
There's a pretty good look, momma.
Also to all you out there, I had a blankie request come through on the blog. If its you, I need an email address to get a hold of you, the first name of the kido was Tristan. I'm hoping its not a prank already, If I don't hear back in a couple of days I will assume it was a prank. But I want to make sure if its real that the little boy doesn't miss out, so if you know Tristan, tell them to do another form with an email address.
7 comments:
Stubborn.. ha ha ha...
Oooooohhhh, I needed a good laugh. Well, we're still waiting on the shorter mickey to stop his leakage (I hope), so I'll ask you another question. My munchkin (little V), has super sensitive skin and eczema. when he needs o's the tape or tender grips break him out. Does that happen to Jax?
p.s. good thinking about the headaches.. I bet the phonebooks help.
Hey Lacey, You might also try putting a roll under his neck, in between his shoulders and the bottom of his head/jaw (depending on how he lays)We had pillows, but they came apart after washing soooo many times. Right now I am using a small blanket, ok a hospital blanket that I filched, rolled jelly-roll style. This should also help to keep his airway open.
Stephanie - anything with adhesive breaks my son out. Tegaderm is a nightmare. Have you tried some micropore paper tape? It may not stick, but it is worth a try. Kids with DS have different connective tissue and have trouble getting some tapes to stick.
Good luck!
Steph & Christopher
Sure hope raising the head of his bed helps with his sleep.
Love the pictures. Jaxson is such a cutie.
He may not look at the camera, but his pictures are ALWAYS cute! What a precious little man!
Do you have a Boppy pillow? We have Gavin sleep on his every night and he seems to breathe better this way. We also roll up a blanket to put under his legs to keep him from sliding down off the Boppy pillow. Just a thought, in case the phone books don't work. Hopefully you'll soon get more sleep and him too!
I hope it wasn't a prank, that would be horrible.
I hope the telephone books help, I think the boppy pillow is a great idea
Boy is he a cutie!! Praying for him in Pa!
Lacey the blanket you did for Ben is so cute, prayers that he will be feeling better quick. I tried to leave a comment over on your blanket blog but it just kept disappearing.
Heidi
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