Friday, July 24, 2009

So Excited ....

Just read that coming in September,Gifts 2 is expected to be released!You can go here and pre-order.I already have.I absolutely cannot wait to read this companion to Gifts.It is sure to be filled with unbelievable stories that illustrate and embody the very core of our miraculous children and the many ways they have inspired those that know and love them.However,a bit of a spoiler for me, as I have had the privilege of reading one story already.My very own second born Caitlin,wrote an amazing piece about her perspective on the many gifts of Miss Zoey Grace.So excited to see it in print and as usual,so proud of Caitlin.

The week has flown by.Time continues to move at an unnatural pace.Almost 2 months since Zoey has come home.Before we blink the anniversary of her diagnosis will be upon us.October 29th to be exact.Not a date I will ever forget but some how time is allowing me to forget the rough patches and embrace the good stuff.Today we went to the pediatricians for a check up.Her first in almost a year.I won't get too cocky on how normal things felt because I feel like that sets me up for the other shoe to drop.Instead I will say it just felt like a welcome change.Zoey weighed in at 22lbs 12 ounces.I think that puts her slightly above the 10th percentile on the Down syndrome chart.Yes,we have our own chart.As tiny as that seems,considering she only weighed 17 lbs before she started treatment,I'll take it.She is 32 1/2 inches long,just about in the 50th percentile.So Zoey is a long and super lean one.My pediatrician is totally fine with her growth.She is still on infant formula,Nutramagin.We will do a consult with a nutritionist to see if she has anything she wants to change up.We will continue to work on oral feeding and her doctor truly feels she absolutely won't be 100 % g-tube dependant forever.It's just going to take time.And lucky for us,we have been blessed with the gift of time.We hit on a ton of subjects,as you can imagine.I won't bore you with them all,just bore you with a few.We are going to continue all therapy in home until she is three as not to expose her fragile body to all the stuff out there.Love that.We decided as well that now is the time to get her fitted with some orthotics.Walking is far off but getting her little feet and ankles positioned properly will help ease that process for her.I learn something new everyday from our indispensable Dr.K and seeing the heart of his practice is with his Special Needs kids,I really hit the jack pot the day I found him for my older children years ago.Maybe Someone knew one day I'd be needing him.I like to think of it that way.Somehow that brings me comfort.

The rest of the crew is doing well.We are enjoying a laid back summer and much needed reacquainting time.Jess and Matt are crazy busy.Jess finishing up her CNA certification program in preparation for nursing school.Clinical work is in a nursing home.She announced the other day that she will NEVER put someone in a home.I guess I better be on my best behavior from here on out.All kidding aside,she is really enjoying her time there.Sounds strange as it is really difficult physical and emotional work but each day she comes through the door with new stories about her new found wiser friends.Matt is taking that 120 hr. month long EMT class in Long Bach.We miss him here and can't wait till he's back.Matt and Jess really have things mapped out and we are proud of them considering they just graduated from Pepperdine and jumped head first back into the fire.Caitlin and Danny and baby Charlie seem to be doing fine.They sound great each and everytime we talk.I miss the little one.I know she has changed so much already.Funny how a tiny thing could only be in your life for 2 weeks and it seems as if you can't imagine them every not being here before.She fits so nicely into our complicated group.Can't wait to get my hands on her soon.Hopefully we will find our way down there again in a couple weeks.Taylor is getting herself ready to leave the nest.Fly or on some days I think run away from here.She is so cute because each day she comes home with a new item for her dorm room and she has already printed and framed an incredible amount of pictures of her family,her special needs kids from school when she was the president of Panther Pals and oh yeah ... Brandon!We are going to miss her and something tells me she is going to miss us too,or at least the boys and Zoey.Speaking of the boys .. busy being carefree boys.Swimming everyday,playing outside till dark and for the last 4 nights making their room a "theater " and watching movies on the portable DVD player on Joe's bottom bunk.And then there's Mark.Insane at work.New show which has found him home no earlier than 1am all week and tonight he called to say he would be sleeping there.The guy works like a dog and NEVER complains.Oh and me you might ask.Okay.Tired but anything beats the hospital.I am getting in my running.Unfortunately with Marks schedule I am not going out until 9 or so,after I get Zoey to bed.Jess holds down the fort and I put in the ipod and go.Tomorrow is a 10 mile day but Mark probably won't be here so my 7 am run with Jess will have to be a later run on my own.That catches everyone up.Whether they wanted to be or not.Bracelet sales will start tomorrow.I will have a paypal account set up.All proceeds go directly to both Jessica's and my Team in Training fundraising, which in turn solely benefits the Leukemia/Lymphoma Society.Jess and I are are each about 60 % there.We need to raise $3,300 a piece.Jess is getting nervous because if you don't reach your goal by September then we are responsible for the remainder.I'm not in the least bit nervous as things always seem to work out.With a little faith and a little hope,things always work out.Hasn't she learned that by now?She doesn't need to look very far for the reminder.The reminder comes in a tiny but mighty package of about 22 lbs 12 oz and 32 1/2 inches tall.That is all the reminder we will ever need.Ever


stephanie said...

Normal day to day life, bore us with it ANYTIME!!!!!!
I remember you saying that Caitlin wrote a piece for Gifts, I don't have the first one but I will get this one.
Everything sounds great, except for Mark's schedule,he had to stay all night!, that's crazy...or is that just TV entertainment for you.
Keep enjoying these wonderful days, I know I enjoy reading about them.

Kele said...

Love the update on the Fam! I am going online to order Gifts 2, and can't wait to see the bracelets, I am anxious to order mine.

ABandCsMom said...

Happy to hear you're busy with life.The busier the better! Sounds like Zoey is doing a great job growing. I bet little Charlie has grown a good amount too. Hope you're able to see her soon.

The VW's said...

I'm so excited about that book coming out soon! Thanks for letting us know about it!

I'm so happy for you, that life is feeling so normal for you! What a welcome change for your family!

Enjoy the days ahead! HUGS!!!

Lacey said...

Wow, so you really HAVE to raise 3300 dollars? When I was getting my CNA, my clinicals at the nursing home were so hard. I left there exhausted, emotionally and physically. It is so hard. I swore I would never work in one. I loved working at the childrens hospital where Jax has spent so much time. I really miss my little heart babies.
Zoey is almost exactly the same size as Jax. Its harder to see when he is always laying down. I so can't wait to see you guys again. My boys are very excited.

Devon said...

I was smiling the whole way through this post. I am so glad things are 'normal' for you right now!! It sounds like Zoey and Dakin are in the same place for a lot of things right now--the orthotics, the feedings. I'm so so so glad she's doing well and everyone else is good. So so glad.

Michelle said...

What could be better than everyday normalcy? So glad you get to have some "boring" if your days are ever boring! Would you put up a link to Jess's fundraising page? I plan to make a donation and will split it between the two of you. Happy Saturday!
Kind regards,
Michelle D.

Googsmom said...

{{{{HUGS the WHOLE family}}}}}}

scrappy quilter said...

I loved hearing the catch-up. Little Zoey is doing so well. What a blessing to have a good ped. It makes all the difference in the world. Nice to hear about your other kids, Mark and you. Hoping Mark's schedule can slow down somewhat. Sounds like you're having a wonderful summer. Hugs..

Anonymous said...

Wow - normal is so busy. Glad things seem to be running smoothly! You mentioned about Zoey's doctor, and yes I believe you were led there so many years ago with the girls and now is Zoey's special advocate.

Thanks for the update on everyone. Also, as you know Heather I will be placing my order for bracelets. And thanks for info on book with Caitlin's article/story. Was thinking about that the other day. That will be a "keeper"

Received my "official Charlie announcement" yesterday. She is so beautiful, this little great, great niece of mine. Her little fingers seem so long. Maybe mommy & daddy have those nice long, slender fingers?

Mark - sorry those deadlines are so time consuming. but as the saying goes - ....That's entertainment"! Is this for TV? maybe Heather can put details in blog - so I/we can perhaps see it and catch your name on air!

Heather running 10 miles... phew, that's awesome!

Love & hugs to everyone

Aunt Bluebelle/Loraine

Joella said...

Heather, The other day when I looked at your post I didn't get to see the video of Zoey, last night I did, it made me cry and smile at the same time. She is soooooooooooooo amazing beautiful in so many ways. She looks great! I would like to get the first GIFT book, where could I find it at. Could you email me or blog me and let me know. Also I would like to help out some way with your fund raiser. If I would make a necklace bracelet and earring could you raffle it off some way to make money, or put it on your blog some way and have people bid on it. I would love to do that for you. Also I want a bracelet. Could you please email me your address. I would like to send some cute bows/headbands for the baby and maybe a couple for Zoey if you would like. Are you really coming to Rockwall TX to see Kele and the family? I would love to see your family if you do. Also I have a button of Zoe on my blog, would you like for me to take it off with everything that has happened or can I keep it up? Love reading your blog, I feel like I have known you forever. My email is, and blog
Love and Prayers

Peter Olson said...

Zoey is in the one hundred ten percentile bracket in my book.
You have to love that "New Normal"

Amanda said...

I ordered mine today, too! I'm so excited to read it, especially about little miss Zoey! Once again, you family ceases to AMAZE me with everything you do!

Keep working hard guys! Miss you all LOTS!!

Kele said...

Hey H! I tried to order 5 braclets and it won't let me change the quantity, am I doing something wrong? Email me and let me know