Wednesday, December 14, 2011

Superhero's in towels!

Yesterday was my birthday. Happy birthday to me!
Look what my fantastic hubby gave me for my birthday!!

Let the blankie making commence! My old machine had tension problems. This will be so nice!

Because life in the medically fragile lane is always an adventure, I spent my birthday screaming at the peds office, and looking for a new doc, yet again! I first made a phone call to the ped last Thursday. My call was never returned. Friday, Monday, and then yesterday, still no phone call. I told this ped in the beginning what I expected from a doc. I can't have 4 days of no return phone call. Just can't happen. I left a nasty message last night. The girl that called me today said the doc has in her notes that she left me a message yesterday. I do get terrible reception at my house, and my phone doesn't always ring. But it always goes to voicemail. And if it took her to voicemail and she left a message. I would have gotten it. So I tend to not believe that excuse. I also told her that even if she did call yesterday, 4 days is not acceptable for a return phone call. I'm going to end up in the ER with him in the next couple days. He can not go 2 months without having his lovenox level checked. Yesterday after his bath when I was cleaning around his gj-tube, a small cut started to bleed profusely! That leads me to believe that his lovenox level is off, and his blood may be too thin. Also, he's having some airway issues. Whistling while breathing, blood tinged junk, and really heavy breathing. Since I don't have a specialist here yet, the only way to get this and the lovenox level checked stat is to go to the ER. I really, really, don't want to have to find a new ped. Is it wrong of me to expect that any ped would do the things I want? Isn't that why they go into the business in the first place! A phone call the same day is not unreasonable, especially when the first day I called, I saw her in Toys r Us on her lunch break. Uh, where was my phone call?

On to cuter things!
I found out yesterday, that you are never to old to clip on a towel and be a superhero!

To fly into the night....

and rescue the maiden in distress....

To take her away in your fancy car.....

And get that thank you kiss...

The dreamy look as you fly off into the sunset..

Where did my superhero go?

*sidenote. This girl always has a rash, it must be a DS thing, no?


Rochelle said...

Sorry about the dr, praying you find one that was like the one in Utah.

Some kids with ds do have more sensitive skin, but neither of our girls gets a rash. Dariya's face gets chapped easy in cold weather so I put Eucerin's calming creme on it. But, Alayna's does fine without anything.

Good luck, hope you figure out what is causing her rashes too!

Becca said...

Love the superhero!!!! Had me giggling. :-) Sammi's face gets chapped in the winter (we use Aquaphor), and I know our kids' skin can be pretty sensitive, but if it's beyond seasonal, you may want to get it checked out. Could even be something in your clothes washing detergent that might be on her washcloth when you wash her face?

So sorry about the ped. :-( Ugh. You absolutely should have gotten a call back waaaay before 4 days!

Heather said...

I say it every time but your kids are gorgeous. :) Does her skin break out in summer too or in winter? Mine does the same thing in winter (I'm nursing a nasty rash on my chin...ughh). Maybe it's not so much a Ds thing as a fair-skinned blonde thing?

Lacey said...

Heather, I think I may know what hers is! She has this new thing where she doesn't drink her bottle or cup all at once, she carries it around, and lets it drool out her mouth. I'm sure its from moisture from that! Jax has super sensitive skin. Every tape there is makes him break out. They both have excema, I bet they just go together!

unconventional said...

Is the rash always around her mouth? Cause if it is, have her tested for Strep G. I taught some kids with DS--and, for some reason (often cause they had their tonsils out--but sometimes it didn't matter), they would pass Strep G around--and it would flare up as a rash around their mouths. It can be treated with antibiotics, although often flared up often.

I say find a new ped--although finding new doctors is NO fun!


Thinker said...

As far as rash have you checked into food allergies and (it you use it) removing sodium laural sulfate (or any laural sulfate) It is in everything from soaps to meds and supplements. I react horribly to this stuff and have to carry my own little bottle of soap wherever I go.