Sunday, May 10, 2015

Off my rocker

Now I've went and done it...... I'm off my rocker.
See----My Mother's Day gift from the kiddos.

No grandkids in sight, not ready to be "old" so I'm just gonna enjoy it and not take it too seriously. But for now, I'm off that rocker. 

It was an uneventful  Mother's Day, which is always good when you have 12 kids. For sure:)

Lots I have to catch up on too-  Gotcha Day for the boys-- 5 years!!!  Monday was the day. Kept it pretty low key, they don't think it's a "big deal" now that they are young men, but hey, these 2 guys are miracles in our lives:) 

I didn't get to see Chase or get his latest picture. I'm sure if he hears I'm trying to get pictures he will probably not visit on purpose. Such great kids I have......

Paisley had a very lengthy rheumatologist appointment this week. Not good.  Not at all.

Not only does she say NOTHING, she just sits there and smiles:(  It's very frustrating as she needs to (at almost 18) take some responsibility for reporting anything that feels "off." 

And she does not. I can usually tell she has slowed down, but I don't always know which joint it is bugging her. The only joint that appears to be unaffected is her JAW. Seriously, every other joint in her shoulders, elbows, neck, wrists, fingers, hips, knees, ankles, toes.  All affected, some worse than others.

 So the med we were forced to try due to insurance is not working. The other med the doctor wants to do, insurance does not allow injections of it till patient is 18, months away for Paisley.

So we are arranging an overnight at Hershey to have rheumatologist inject multiple joints under a light sedation.

 She wants to do so many she's not willing to do them without sedation.  Then the next morning (can't get the same day as of now) do the new med infusion since it has to be done first time in hospital and then done locally for the next few months until she turns 18 and can have injections.

We are very thankful there is another med to try, we haven't run out of options for her care yet. That's a huge blessing.


Phoebe and Kat had "Day Of Celebration" at the end of the week.  I prayed and prayed for RAIN. 

God was not amused by me and we had the hottest day so far this year.  Okay God, I'll behave now that I roasted and nearly melted away.

School can't provide someone to watch over the sun exposure of an entire day outside for Phoebe so I take canopy with sun wall, sunscreen, umbrella, hat, water spray in cooler, water, lunch, I even had chilled chap stick:)

I was the "hit" of the day of her friends and teachers with the chilled spray water. It was just so stinkin' HOT.

I didn't get a picture of Kat there, she seemed to be avoiding me as much as possible this year? 

 Not sure what that was about.... guess I am becoming "embarrassing?"  Uh huh.

Oh well, I'm trying to get my "yearly picture" of each kid in front of my blooming lilac bush, so far I've tried 3 times and I still need 4 kids to redo.

SIGH....... and they think they have it hard just showing up outside dressed??

Happy Mother's Day to ALL!!







 

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