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Hi All,

I just wanted to share a positive experience for once.  

With the weather in the East kicking our butts w/lots of snow, my girls had a snow day this past week.  Most mom's complain that their kids are getting snow all over their house and their in and out gets on their nerves.  I have to admit, I used to be one of those moms.  I am reformed.  This past snowfall the kids in my neighborhood got together and did something I used to do as a child...PLAYED.  Imagine, no ipods, cell phones, game boys, no electronics at all.......   The image of my daughter making snow angels just like the other kids and being so proud to be just like the others will stay with me for a lifetime.   Finally, normalcy, being just like the others.

Lizzies Mom

 Reply posted for sraymom.

You are sweet - thanks for checking in!  We are continuing to do well on the 6MP.  No flares and she is growing like a weed.  I know we are blessed and as I've said before, I'm thankful for every day she feels good.

How's Steph??

Claire's Mom

 Reply posted for AZMOM.

Hi Claire's Mom:  How is Claire doing?  My Steph has been on 6MP for 7 months now (along with SCD and 3 billion other pills).  I haven't signed on to the Forum in a while, checking on some of the kids out there!

 Reply posted for Lizzies Mom.

Well, I went from a first time 5K runner to not running at all while Claire was so ill.  Now I don't have an excuse so maybe this is something to get me motivated AND raise the money and meet some folks.  There were two women my age in our pediatric support group in AZ that ran for their kids in Vegas and I was so inspired. 

Doing "something" would be a good thing, right?????

We got a bunch of snow again last night and so the kiddos are out of school again.  Good grief!   At this rate, we'll be in school in June.  Southern Ky is not equipped for snow removal!

Hugs,

Claire's Mom

 Reply posted for AZMOM.

I know the wait is simply grueling...... I'll keep my fingers crossed that the days fly by and the results are terrific.   It's great to hear that Claire's previous doc checks-in.  We've been blessed too, (Lizzie's  has even rang our phone on a Sunday to see how her "baby doll" was doing).  Unfortunately, so many doctors don't give the services our families have been blessed with.  

I would love the do this year's 1/2 (was supposed to do last year, but it fell on the same weekend as my oldest daughter's dance recital).   Unfortunately this year I haven't been able to keep up w/my reg. runs (foot surgery Nov. and Dec.).  So, I am still up in the air about June (currently dealing w/on-going swelling / interior stitches)  ugghh.  Thought it could be an opportunity to raise some money and meet some great people.

Lizzies Mom

 Reply posted for Lizzies Mom.

Yes we are lucky.  Ask me how I feel about him if the day comes she isn't doing well.  LOL.  I think I'll feel the same but gosh, we loved our AZ doc.  He stuck with us through thick and thin and still periodically emails to ask about Claire.  Means the world to me. 

No results yet but they take forever to come in.  Forever = 2 weeks in my book. 

I would LOVE to do the 1/2 in Va but with the move this year, I know it isn't happening.  Thinking about next year though......  What about you?

Hugs,

Claire's Mom

 Reply posted for AZMOM.

I am so glad Claire is doing well.  You really got lucky w/the move, finding a great gi (it is such a major factor).   I'll keep my fingers crossed that her body adjusts well w/the lower dosage.  

Lizzies Mom

Any chance you'll signing up for the 1/2 in VA? 

 Reply posted for Lizzies Mom.

Thanks for asking.  :-)

You know, we've gotta have the 'snow angel' moments because it is always something, isn't it?!?!?  I hate to hear that Lizzie lost even an ounce.  Please keep me posted.

Claire is feeling really good and growing like a weed.  The new doc is changing her 6MP level (downwards, not up) and I'm trying not to be nervous.  LOL.  Had some labs last week to check the metabolites.  I hope she can stay at a therapeutic level on such a low dose because she has really had a good few months. 

Glad to talk to you -

Claire's Mom

 Reply posted for AZMOM.

Claire's Mom,

You are right, the small things are often the best!

How are things w/Claire?  Hopefully all is well.  

Liz just had an appt. Fri. and I am baffled.  I truly thought we had a great holiday and a good  3 months, turns out she lost 1 1/2 lbs (not good).   The doc tried to calm my much shot nerves, but was unsuccessful.  Oddly, her blood work was good, she's been active and hadn't complained of any symptoms.  We go back in 3 months so we'll see.   She is checking her thyroid w/her next bloodwork.  They are calling it "unexplained weight loss".   Ugh, just when you think things are "normal".   Oh well, I'm done complaining.......

Hope all is well.

Lizzies Mom

 Reply posted for Lizzies Mom.

Lizzie's Mom - Your post made me smile...and cry!  LOVE it.  It's the little things that matter most some days.........

Hugs,

Claire's Mom