Guest post...

We have a guest post today...

Yep, Grace Astrid Ross is going to give you our weekly update and tell you a little bit about what life is like in her world these days!

-The highlight of my week was getting to meet my new teacher, Mrs. Carol, and the rest of the staff who will be helping out in my class this coming school year at The Rise School.  They were all so sweet to me and seemed really excited to meet me and my mommy and daddy.  I got to explore my new room and I can tell that while I may cry when I'm dropped off (because that's how I roll), I'm going to enjoy all of the fun and purposeful activities that they have planned for us everyday.  I can't wait to see what it's like taking a nap on a nap mat with all my new friends...  I sort of picture it like herding cats, but I guess my teachers are good cat herders.  I wonder if you have to attend school to learn to do that?

-I still don't sleep through the night, in fact I've only slept through the night a handful of times in my almost two years of life because... well, sleep is over rated.  I have started taking melitonin (which tastes terrible) and my mommy has been using some essential oils to try to help me stay asleep, but they haven't kept me from partying in the middle of the night, so my Dr's want for me to have a sleep study done to make sure that I don't have sleep apnea, etc, so next weekend my daddy and I get to have a sleep-over in a sleep clinic.  Will you please pray for us?

-I've had a busy weekend being the project manager for the resurfacing of the pool deck project at my Papa and KK's...

-My Bubba had a sleepover this weekend...

while I sure did miss him, the girls (and Daddy) went to dinner...

and played a serious game of Mario Cart and Super Mario Bro.  My job was to run interference by pulling on peoples remotes and trying to distract them with my silly antics!

Here are ten of my favorite things to do, fun facts, or silly antics that I've been up to these days...

1)  One of my favorite things to do right now is play my Tither's keyboard, then to turn on the music feature so that I can dance!  I have some serious dance moves from interpretive dance to hip hop.

2)  I love to try and sneak to the back of the house without my mommy and daddy seeing, so that I can try to wake up my Bubba and Tither after they have gone to bed.  Mommy and Daddy now put up a baby gate so I can't accomplish my plan, so I do the next best thing, stand at the gate and yell to my Bubba and Tither!
3)  I'm a rule follower in training...  I like to make sure that I understand the "rules" by testing them a lot...  If I know something is a "no no,"  I will wag my finger at it and say "no no" and then slowly with my pointer finger, reach for it while looking at my mommy and daddy, just to make sure that it is still a "no no."  To be double sure, I do it again and then I sometimes even beat my mommy and daddy to the consequence and thump my own hand.
4)  I also love to read books, tickle, and give zerberts!
5)  I can bear crawl really fast, and because I go so fast, I sometimes wipe out.  I can cruise and walk with a push toy.  I'm close to standing up on my own, but haven't done it yet because I don't want to overwhelm everybody with so many tricks at once, so I'm going to surprise you with it one day when you least expect it.
6) I like to make this fussy sound, then my mommy and daddy say that they don't speak "fuss," so to please use my words; however, my Tither always falls for it...  I fuss, she picks me up and then I turn it off...  it works every time.  She's the best Tither ever!  I forgot to mention that I LOVE attention, so I'm always happy when someone is talking to me or playing with me.
7)  Some other things that I love is to sneak into Andrew's room (since everyone always closes the bathroom and laundry room door, so that I can't play in the toilet and dog's water bowl) and throw his toy cars all over the room, find hats or helmets to put on (but I'm not trying to wear a hat for a purpose like keeping the sun off my face while in the pool, etc).

8)  I also like to wave to people and say "hi" until they acknowledge me, try to sing (I especially like the Frozen sound track and Ariel, from Little Mermaid's voice that plays when I push a button on my favorite necklace),

and identify people with pretty hair or call attention to when mine looks particularly pretty by doing this motion and saying "oooooo!"

9)  God made me very "stretchy," so I like to entertain my family by showing off my moves.  Abigail and Andrew call it my Downsie power!  My mommy isn't fast enough to catch my most stretchy moves on camera, but here are a couple of pictures of me just warming up...

10)  I now weigh 20 lbs!

I don't know how I could ever thank you for being my Village...  I do have a lot of love to give and dance moves to share, so I hope that I get to hug or dance with each and everyone of you someday!  

And never forget that I LOVE YOU!!!

That's it for now... I'm pushing send!

Update on Grace's liver labs...

Thank you for your prayers about Grace's liver labs...  We finally heard back from one of the nurses who works with her liver Dr. and one of her liver numbers is back within normal range and the other has come down significantly, but not yet in normal range (normal is 6-45 and hers is 95, this is much improved from the 400 range it was in previously).  Will you please join us in praising the Lord for answering our prayers and continue to pray that the second liver enzyme (her ALT) comes down within normal range by her next blood draw a month from now?  That's it for now, I have to go wrangle our loose Gracie Doo from barging into Abigail and Andrew's room to try to wake them up!

Busy, but Blessed Weekend

-This week we finally got back in the swing of things with Grace's therapies (we have been on hiatus due to vacation, illnesses, scheduling conflicts, etc).  Two out of three of Grace's therapists this week mentioned how amazed they were with Grace's progress, from all of her new words to her engagement/personality and mobility (for her age).  Those types of comments sure do bless a momma's (and daddy's) heart because you can't help but wonder, through all of the "crazy," how being intubated and sedated for so much of her life would effect her development, etc.  Those comments serve as a powerful reminder that God is above the "crazy!"

-Grace had her liver labs drawn on Thursday and we are still waiting on the results.  Will you please, please, please keep praying that her labs are all within normal range?

-This weekend has been nonstop, but full of sweetness and hugs from God...

On Saturday, we had two very special birthday parties!  We started at a birthday party for a PRECIOUS little girl, Leila...

 who has a mommy that I call "My Charmoin" because there is no question that God hand picked her to walk me (or maybe carry me) from the fear and desperation of Grace's Up's diagnosis (when I was pregnant) to the joy and gratitude that I found on the other side of all of those fears (once we got to meet, get to know and fight for our little Gracie Doo).  She spent many hours answering all of my (what seem now as being really silly) questions, encouraging me, and being a faithful prayer warrior.  It wasn't until this Saturday that I actually got to meet "my Charmoin" in person and hug her neck!  As if that wasn't enough, we got to meet a number of other amazing families that have kiddos that have gone to or are still attending the Rise School, where Grace will start in one month!  For Abigail and Andrew, this party was the highlight of their weekend because they were amongst those who are celebrities in their minds...  a ton of other kiddos with Up's!!!  They get SO very excited to see (let alone talk to and play with) anyone with Up's that we seriously had to workshop before going to the party that they didn't need to point out everyone that has Up's because we want to be sensitive not to offend anyone.  They have a tendency to say really loud "Mommy!!!  Look, there's a Downsy Doo!!!" because to them it is so exciting and special.  I guess it's not a bad problem to have, their hearts are so stinkin' sweet!

Get this...  the second birthday that we went to was for 2 of the sweet kiddos that belong to one of our newest, God-ordained, precious family friends!  Remember the Pepper's that I posted about before?  They have a baby, Presley, with Up's who is 3 months old and will also require heart surgery (will you please pray that Presley would be able to get as old as possible before she requires heart surgery and that she would rock that surgery?).  Long story short, I had been praying that God would bless me with the opportunity be a "Charmoin" to somebody else and He mercifully connected Jenny and I when she was still pregnant with Miss Presley.  I couldn't be more honored to get to be on this journey with her and her amazing family!

Sadly, this is the only picture that I have from the birthday party, but at least it's a sweat one of Gracie and Presley (while that looks just like Jenny holding Presley, it is actually her sweet mom :-).

-Since the second birthday party we attended was closer to "Crack and Toot's" (my in-love's) house we stayed the night there, which is always a treat because they spoil us with their hospitality, sweetness (Mary- "Crack"), and funny antics (Ed- "Toot").

As an added bonus, we got to see Aunt Becca, Uncle Brian, and cousin Joe on Saturday and we went to church and lunch with them today!  Bummer, forgot to take a picture!

Some random pictures of our spunky Gracie Doo from this weekend...

We pray that each of you, sweet Village members, know that you are loved, appreciated, and prayed for by the Ross Family!  Hope each of you has a blessed week!

Missed you...

I'm not sure that anyone besides my mom noticed that I missed posting on the blog last week, but in the event that you did, I apologize for the momentary interruption...  my body chose sleep over a blog post by accident (I sat down to write a post and found myself asleep instead :-).  A lot has happened since my last post, so here you go in rapid fire mode...

1)  Grace is cruising and walking with push toys! 

2) Grace has trained us to keep all bathroom doors closed because otherwise she will recreate a splash pad experience using the toilet water :-/

3) Everyone in the family besides myself (knock on wood... even though I don't really believe in jinxing) has had some sort of illness over the past 2 weeks.  Grace, of course, always wants to set the bar really high by adding a level of drama to her illnesses... THE DOTS (after two blood tests we can rest easier that it isn't the feared leukemia).  The blessing through these illnesses is that, with the use of my new found love of essential oils (we can't give Grace most supplements and we have to try to avoid Tylenol because she is on aspirin everyday so having some sort of alternative to those types of things is exciting), the course of each persons illness was very short lived (a day or less).  We continue to praise the Lord that nobody's illness kept us from being able to enjoy our previously scheduled plans, to include...

     *4th of July with our good friends, where God so beautifully reminded us that earthly fireworks have nothing on Him!  We witnessed the most stunning lightning storm that we've ever seen.  Forgive me, I'm from California so I haven't seen near as many lightning storms that many of you Southerners have, but I never knew that lightening could go horizontally, from the ground up, and light up the sky with more than five huge bolts at a time.  Our kids are not fans of how loud fireworks can be, but fortunately they have sweet friends that love them through their fears :-).

     *Abby started an ice skating class (that's what she chose for her summer activity)

We are cheering Abby on and loving that we get to bundle up in the ice rink during this sticky and hot Texas summer :-)

     *Andrew is doing gymnastics again for his Summer activity (oops, event not pictured)

     *When Abigail started Kindergarten, she got her ears pierced (and the day that she started Kinder she got a little sister).  To celebrate Andrew starting Kindergarten, he isn't getting a new sibling (unless David adopts a Downsy Doo behind my back :-), but we surprised him by redecorating his room in a safari theme (since he loves all things animals) complete with a tepee (that even Grace gets a lot of use out of).

     *Both big kids did a Frozen theater camp this past week and at the end of the week they put on a play for family and friends.  The kids had a ton of fun (Abby taking everyone of her parts very seriously and Andrew not so much, however, he somehow knew all of his parts and dances during the performance, we couldn't believe it) and we loved getting to watch their hard work.  We brought Abby flowers and Andrew a Spider Man mask for a job well done!

     *My Mom is in town this weekend, so you know what that means...  time to get our nails done!  How cute is Abby's little french manicure?

Grace and Nana Lu Lu...

     On a side note, if only we could bottle up an ounce of this kids joy...  here is what I've been looking at since trying to type this blog post!

Village, will you please pray for health for our family (especially Grace)?  Will you please pray specifically that when we have Grace's labs redrawn to check her liver function (later this week or early next week) that all of her numbers are within normal range (they should be in the 0-60 range and hers were about 400 :-/ )?

Thank you, sweet Village!  PLEASE let me know how I can be specifically praying for y'all (text, call, email, facebook, etc).

"If you look for me wholeheartedly, you will find me." - Jeremiah 29:13

even if it's in the form of a much needed hug from God when you are feeling overwhelmed (a heart in the sky :-)