Tuesday, March 25, 2014

Quick Update

I have so much to share with you.  Here's a snapshot of what's been going on.

We had Harlie's appointment with her pulmonologist on the 13th.  I will go into more detail very soon.

The Deep Run Marathon Dance was the 14th and 15th.  It was awesome.  What an amazing experience!  The whole thing was incredibly impressive.  I really want to tell you all about it (and show you pictures and videos) but all that stuff is on my other computer, so I will have to save that update for later.

I spent last week in bed, sick with some horrible flu-like virus.  It's pretty much gone now.  While I feel SO much better, I can tell that I am not fully back to 100%.  My lungs and exercise endurance is dragging a bit behind.  Which is perfect timing with the Ukrop's 10k coming up on Saturday.   I don't know why I signed up.  No more races after this one and my half at the end of April.  None.  At least for a long while.

Now that I am better, Tom is sick.  It's much worse when he is sick, since he is the one that provides dinner for the family.  I am going to try really hard to make dinner tomorrow night to give him a break.  I know that sentence makes me sound like a complete idiot.  But, as I've had to learn so much in certain areas (almost every major medical specialty) some basic brain function had to be sacrificed.  The cooking was the first to go.  Poor Tom.

Cooper started soccer again and is loving it.  Apparently the last few months of growth and maturity made a difference, because Tom said he could immediately see that Cooper was much more into it than in the fall.  I missed all the action because I was sick.  But, he scored two goals in his very first game!  What a turn around!  I also signed him up for basketball through his preschool.  I love that they offer programs like that.  He stays for two hours one day a week to play there.  Awesome.  He liked his first class earlier this week.  We'll see how it goes.  It is amazing how incredibly different each parenting experience is/has been for each of our kids.  Murphy has NO interest, Harlie is unable and Cooper is ALL in.  It's a good thing I'm so flexible...

I want to share a video I have of Harlie tubing herself her dinner.  But, it's on my other computer.  So, I will have to save that post for later, too.  If you're on Facebook, you might have already seen it.

My Mom had her lumpectomy and all went well, I think.  She has another appointment next week and we'll know more then about the next steps (radiation, etc.).  But she isn't in any pain and she is in good spirits.

My younger brother, Cabell and his fiance are expecting their first baby in August.  They just found out they are having a boy!  We are all excited about that.

Now that the Deep Run Marathon Dance is behind us, we are setting our sights on the We Heart Harlie and Friends event May 3rd.  It will be here before we know it!  Here is the flyer...

Registration for the 5k and Kid's Fun Run is open and new shirts are for sale.

We are going to have Women's shirts in Tahiti Blue, Purple, and Vintage Black, Men's in Vintage Black and Envy (green) and Kid's in Turquoise.  Pictures of the shirts will be up on the website soon.  If you have come in the past, please note the new location.  It is going to be at Deep Run High School this year (instead of Glen Allen Elementary).  We outgrew the space at Glen Allen, which is a great problem to have!

I can't remember what I've told you about We Heart Harlie, but it has grown into a foundation!  It is now We Heart Harlie and Friends and Lynda has been working with an attorney and CPA to get all the paperwork and applications done to make it be an official foundation with a 501(3)(c) status!  It is so exciting!  Here is the new website, which is in its beginning stages as Lynda is adding to it and adjusting it as necessary.

We are so excited to be able to help more families now.  Each year we will select different families to help.  We have a board, and it is almost full.  If you would be interested in being on the board, please contact us and let us know.  And let us know if you, or someone you know, would be interested in donating a product or service for the raffle.  We are so grateful for every donation!

We are hoping to do some more (and different) fundraisers for the foundation throughout the year.  We would like to do an adult only silent auction with food and drinks.  And last night Cheeburger Cheeburger had a fundraiser night where they donated a percentage of the proceeds to We Heart Harlie and Friends. How cool is that?! Tom and I ventured out and took the kids.  It was so much fun!  There were so many Glen Allen Elementary teachers there!  It is so sad that we don't get to see them since Harlie is still on home bound.  But it made seeming them out (and wearing their We Heart Harlie shirts) even better.

I have so much more to share!  But, I have to stop for now.  Harlie has a CT scan scheduled for Friday.  I want to share what I know about that so far.  So, I am hoping to update again tomorrow or Thursday.

Thanks for checking in!
Much love,
Christy xo

3 comments:

Wendy said...

Hello! I just found your blog a little over a week ago and have spent days reading every post from the beginning. You all are amazing! We have 5 kids and the youngest two, both adopted, have some special needs. Ahren, adopted from Guatemala, has a form of congenital muscular dystrophy. The doctors cannot tell us his future, but so far he is doing well. Jon, adopted from our state, came with many psychological and emotional/behavioral diagnoses. He also has an underdeveloped lower jaw that we are attempting to treat without surgery. (Not going well) our struggles are nothing compared to yours, so ,don't think I am comparing problems. I just wanted you to know that it has made me so much more sensitive to the types of things you deal with. As I read your blog I cried, I laughed, I became angry and I hurt for all of you. No one asks to be the Mommy to a special child. (Well, actually with Jon we knew his issues before we accepted his placement) I think the thing that always gets me the most is the never-ending-ness of it. Ok, now I am just making up words! You know what I mean. No breaks, no days off, no vacations from the stress, worries, etc. there is only good wine and a good nights sleep. Those are what save me when I am really in the weeds.
Thank you for sharing your lives with me. I have really enjoyed getting to 'know' all of you.

Wendy

Susan said...

Busy as usual it sounds. So much good stuff going on. Hope things are going well on the medical front. Can't wait to hear. It's great to get an update. Hope you're feeling better soon! XOXO. Miss you.

Christy said...

Wendy,

I know exactly what you mean. That never-ending-ness is something we moms with children with a lot of medical challenges discuss often. When I say I am "tired" I don't mean that I didn't get enough sleep last night (although that's often the case, too)! I really mean in this marathon of our life, I am growing weary. It's such a difficult place to be in - so tired you don't know how you're going to keep going - but knowing that stopping would be worse.

Thanks for reading and writing. Good luck to you with your family, too!
~Christy xo