THE BLESSING OF GRACIE JO

2012-02-01T05:51:00.001-08:00

BIG SISTER IN TRAINING

My Gracie-Girl is 20 months old today! A few things have happened over the past month: #1 being that she proudly announced that she's going to be a big sister come September! I'm sure she doesn't know what's hitting her yet, but we are all excited & can't wait! We're hoping for a quick and healthy pregnancy. :-)

Gracie has also mastered climbing the stairs. So mom and dad have to remember to close the gait behind them. Otherwise, she's half way up the stairs before you know it! She's a quick little girl! She's also working on climbing on everything else too. One of them being Nana's gait! She loves to climb up it like a little monkey. We are definitely in for it as she gets bigger! :-)

We did have a purple spell this past month. Gracie has turned a blue tent before, but never really purple. Her whole body (including her tongue) was dark purple. I really only have one way to describe it, but I'll spare sharing it due to the fact it's kinda scary and some might not know what it looks like. All doctor's are stumped of what caused it. The x-ray didn't show anything, and the ekg & echo showed now changes either. Her cardiologist is taking her case to the cath conference (a conference where all the dr.'s from other hospitals come and talk about major cases) on Friday. They will either decide to do more testing on her (a MRI and/or take her to cath lab & put a stint in), or just hold off for awhile and keep doing follow-up visits.

Overall, we've had a pretty good month with Gracie. She loves to tell stories, jokes, and giggle all the time! We can't wait to see how she grows this month!

2012-01-26T06:12:00.000-08:00

TAD-POLE

We are excited to announce that baby # 2 (whom I've called 'Tadpole') is due September 5th. We went to my first pre-natal appointment yesterday, and was excited to see our lil tadpole and it's heart beat.
I was a little nervous going into this appointment, because I was still a little shocked that I was pregnant. I had been getting worried that we hadn't gotten pregnant yet, because we had been trying for about a year. Getting pregnant with Gracie wasn't an issue; as she's a honeymoon baby. However, since Ryan is away most of the time for his work, and we've been under a bit of stress with Gracie's care, I had talked myself into not getting totally bummed out for a few more months, and had written off being pregnant yet. It just proves that God has His own timing! :-)
Due to the fact that we had an eventful first pregnancy, we had a few concerns that we wanted to discuss with my doctor. She had the same concerns, so at least we'll all be on the same page. :-) They will be doing an amniocentesis at week 16 to test for chromosome defects and anything else that might be wrong with the baby. We will then go to Lutheran General at week 20 for a level 2 ultra sound to check Tadpoles heart to make sure it's ok too. Both tests seem routine to do since Gracie has D.S. & a couple heart conditions. We all just want the best care possible!
Here's to hoping and praying for an uneventful and quick pregnancy! :-D

2012-01-13T09:55:00.000-08:00

FIRST SHOVEL OF THE WINTER

I had to shovel for the first time this winter. I first tried yesterday afternoon. I was set out to just clear the front porch, walk-way, and the end of the driveway. That way my babysitting mom could cleanly walk up to pick up her lil' girl. However, I gave up after finding it was really no use due to the fact that it would just be covered up again within a matter of minutes. I figured a sappy apology would work when she got there to pick up lil' girl. Good thing it did! :-) I set out this morning to shovel again. And it's staying pretty clean out there so far....for the exception that Harvard doesn't plow side-streets...or at least very well. I guess I can't have it all, huh!?! :-) So when mom shows up to pick up lil' girl she'll be able to walk cleanly and freely up the driveway & walkway w/out getting wet shoes & socks. Here's to being thankful for the pretty snow, and for being in good health to actually shovel it this year! :-)

2012-01-02T08:26:00.001-08:00

19 Months Old On New Year's Day

Gracie turned 19 months yesterday. What a great way to spend New Years Day, huh!?! I must say Gracie has learned a lot in the past month. She has learned to climb the stairs by herself, and fall straight back in order to get down (in which most times she thinks is hilarious). An attitude has developed...even more than what she had before. I think she is learning to defend herself with the little girl we babysit during the week. Which results in the over developed attitude! lol. I am keeping busy running after her due to the fact that she likes to eat dog food, and take all the movies off the shelf. Oh yeah, and laugh when she gets in trouble for it! I'm doomed I tell ya....I'm doomed! :-)

2011-12-29T12:44:00.000-08:00

CHRISTMAS 2011

Here we are in our Christmas 2011 attire! Our Christmas Day family photo is on the left. We have a tradition each year that we open up 1 gift on Christmas Eve. As you've probably guessed that 1 gift is our new Christmas pj's! We then stay in our pj's all day long on Christmas as another yearly tradition. It's a time to enjoy ourselves and family time without any worries!

The middle picture is of Gracie-Grace in her Christmas Eve outfit. Thanks to Auntie Alicia who made the most beautiful tutu in the world! :-)

The picture to the right, (although, a little hard to see) is of Gracie with her most favorite Christmas present ever! She just loved the educational stuffed dog that nana & pop-pop got her! It sings and rhymes and more! Gracie loves to jam with him!

Two more Christmas' and we are done for the year! One this Saturday and one more on Tuesday! :-)

matty b

2011-12-23T17:55:00.000-08:00

MY PERFECT GRACIE-GIRL

I had a friend send me this song awhile back....prolly last summer sometime. It still makes me cry every time I listen to it. The song rings sooooo true to me! No matter how "down" I get about Gracie having down syndrome, and worrying about (alot) that comes with it this song says it best....she is perfect just the way she is! Thank you God for my perfect little girl!

2011-12-19T13:53:00.000-08:00

A GREAT GIFT

Today I received one of the best Christmas gifts I have ever gotten thus far in my life. My little Gracie-Girl crawled on hands & knees 12 total crawls today! I can't say how happy that makes me feel!

Again, I find myself not being in the best of moods this holiday season. This holiday season marks the 3rd anniversary of when we found out Gracie's diagnosis' (Down Syndrome & Tetrology of Fallot...heart condition). It was December of 2009 when I got the phone call saying my 2 part blood test had a 4% difference (one came back at 100% the second came back at 96%), so the genetic counselor would be calling me for further testing. I remember the doctor saying that she was assured that since the blood test #'s were so high that nothing was wrong, but wanted to make sure and legally recommend me go see these counselors. Yeah, I could have knocked her off her rocker when we found out the results of the amniocentesis that January.

I know my focus should be on the true meaning of Christmas. I should be thankful for the birth of Christ and all He's done for us. However, I still find myself filled with hurt, sadness, anger, fear, robbed and guilt when the Christmas season approaches. I feel hurt, sadness, anger, and robbed that I didn't get my 'normal' baby girl that I've always wanted and hoped for. I feel the guilt that some how it's my fault that this happened to her. I fear sleep and the nightmares that may come with it. I know that none of this is true, and that God has a purpose and a plan for my Gracie-Girl. On the other hand, my mind hasn't caught up with what my heart is truly feeling at this very moment.

However, it's moments like today, where I see her crawl because she wants to for the first time (more than once or twice), or her cruising the furniture non-stop, her babbling, her calling me 'momma' and knowing who her real momma is, her saying momma and trying to tell me something (and understanding what she wants), that makes me feel like there might be a light at the end of the tunnel. It's moments like these that makes me want to believe that God really does have an AMAZING plan and/or story for our little family and our Gracie-Girl. It makes me feel like we are making progress...huge progress!

So here I sit, still in pain and hurt and everything else, and pray that God will give me the peace and understanding this Christmas season.

Great job today Gracie on your greatest accomplishment yet, crawling. I love you!

2011-12-05T16:29:00.000-08:00

DANCING A SANTA SONG

DANCING TO SANTA SONG PART 1 DANCING TO SANTA SONG PART 2

I think my Gracie-Girl picked up on some family dancing skills. Although, she didn't show it in these videos singing is also a hobby of hers. Gracie-Girl surely didn't get either of these talents from me! :-)

2011-12-05T15:56:00.000-08:00

The Beginning of Christmas

We enjoyed our first 'Christmas' of season this past weekend! Ryan's mom & step-dad drove up and stayed with us Saturday night. It was nice to see them (as our visits are far and few between, unfortunately).
They brought gifts galore! I'm not sure Gracie knew what to do, there were so many! Gracie got toys, clothes, and more toys! While mom got popcorn & potato skin chips (my favorite...Ryan hates them), and dad got lots a chocolate (not a favorite of mine, lol).
We also enjoyed a nice lunch with them on Sunday after church. We're glad they made it up for the holidays! :-)

2011-12-01T09:39:00.001-08:00

CELEBRATING 18 MONTHS WITH NEW TOYS

Gracie's New Toys

We now have a 1 1/2 year old! Can that really be possible!?! Gracie is growing up so fast! She loves to give hugs & kisses, make new noises, and loves having friends over to play. She has learned how to turn off & on lights now. If I walk past a light and forget to have her turn it off she will point at the light switch and say "yite.yite.yite." until I take her over to turn it off. Such an energy saver, huh!?! :-)

Gracie got to experience decorating the tree with mom and dad this year. She is quite inclined with the plastic bag we put under it to catch the water and save time when taking it down later on.

I have been rearranging and organizing our house (yet again, lol), and I brought down some of her books and toys I had in her room. Let me just say, she.is.in.love! She reads each book a million times a day, and is having a blast playing with the toys she didn't know she even had (I had them in her toy box in her room).

Gracie is a little busy beaver. She never stops moving! There is so much to see and so much to do! How dare we stop to smell the roses!?! lol

I love you baby girl! Happy 18 months!

2011-11-29T10:36:00.000-08:00

MERRY CHRISTMAS

2011

2011-11-28T10:01:00.000-08:00

Getting In The Christmas Spirit

I couldn't wait to put our Christmas decorations up this year. This is our first Christmas in our new home, and I'm just excited! We got our tree yesterday, and it's fully loaded! Well, as fully loaded as you can get with an 18 month old scootin' around. :-) Her favorite part of the tree is the plastic bag that it's standing on. Ya know it tastes soo YUMMY! We also attempted a family photo in front of our tree, and after multiple try's this is the best we got. Ryan insisted on having our dog Holly in it too. Not half bad for a Christmas Family Photo. Merry Christmas!

2011-11-25T17:10:00.001-08:00

THANKSGIVING

We had Thanksgiving at my parents house yesterday. It was a day full of great family time, lots of great food, and relaxation! This year I have lots to be thankful for:

~ I'm thankful for my loving husband who works hard to support us.

~ I'm thankful for my daughter who has brought so much love, joy, and happiness to our family.

~ I'm thankful for my parents and siblings who have done nothing less than love and support us.

~ I'm thankful we had everyone under one roof for this Thanksgiving. Woot-woot, Ryan made it home for the evening! :-)

~ I'm thankful for my daughter's improving health!

~ I'm thankful for amazing friends who support, love, and have a heart to 'just' be there for me when I need them!

~ I'm thankful I am able to be a 'stay-at-home' wife and mother.

~ I'm thankful for the babysitting jobs I have to help pay for things around the house.

~ I am thankful for a God who showers me with grace and mercy!

~ I'm just thankful!

2011-11-13T18:58:00.000-08:00

A WALK ALONG THE COUCH

I must admit I've had a hard couple of weeks with my baby girl. Not intentionally her fault by any means. I've been struggling as a mom....struggling as a mom of my baby girls 'down syndrome'....just plain struggling I guess. First off, I've been noticing more and more that some of her expressions are that of down syndrome. As much as I don't want to admit it, my heart still breaks sometimes that my Gracie-Girl has to have down syndrome. That she has to go through the struggles that come with it. Which leads me into my next struggle. I've been wrestling with the fact that she isn't up to par of what society calls "normal". She is delayed. Again, my heart breaks for her sometimes! No mom wants their child to be delayed...simple.as.that! However, I'm learning that this is our life, and we need to do what we can to move forward to help our lil Gracie-Girl. There are days where I want to stay in bed and cry all day long, run away and never come back, or believe that this is all a dream. On the other hand, I'm lucky to have days like today, where I see the progress we are making with Grace. It's days like today that make it all worth living for, make it all worth waking up in the morning, make it worth making that extra appointment to help her, making it worth all those therapy sessions, just plain worth it! This evening my Gracie-Girl walked along the couch to eat off of Ryan's dinner plate. It's moments like this that I cling to! These are the moments that remind me of that special something that I wake up for each and every morning! These are the moments that keep me going day to day! These are the moments of why we work sooo hard with our 'therapy exercises' every day! That special something is my Gracie-Girl. I love you Gracie.....YOU ARE WORTH IT! :-)

2011-11-03T06:19:00.000-07:00

Trick - Or - Treat

Halloween was just like I had remembered it being when I was a little kid. It was so much fun to take Gracie out Trick or Treating with her cousins. She was my little lady bug! Gracie - Girl was so stickin' cute if I must say so myself. Even though she didn't keep her antennas on. :-) Each of her 3 girl cousins took turns pushing her up to the door while another took her trick or treat pale up for candy. She loved it!

2011-11-01T07:48:00.000-07:00

A Great 17 Months

We had an ENT appointment yesterday at Lutheran General, and on the way there I was reflecting back on the last 17 months of Gracie's life. Most of her appointments are an all day event, so I tend to dread them. However, as I was thinking back over the span of her life, I couldn't help but think of how far she's come. We have dwindled her important appointments (ENT, Cardiology, Clinic, etc.) down to every 6 months to 1 year. Don't get me wrong, her therapies are just as important in her health care, but I'm most excited that we don't have to pay our weekly appointment dues to Lutheran General anymore. It feels great to have them far and few between! Although, we are on a rough road still or at times, I can't help but PRAISE God that she is becoming a healthy little girl. She's not perfect health wise yet, but she's getting there. And she's no where near where she was a year ago. I. Thank. God. Up next is her eye appointment at the end of the month & a cardiology appointment in January.

Gracie-Girl turns 17 months today. And yes, I'll admit, she's spoiled rotten (especially by her daddy)! She has made a new friend this past month. We started babysitting a 5 month old, and has been great for her. She is adjusting well to having an "extra" in the house during the week. Although, she is protective of her toys, but nonetheless, doing well. Gracie loves to giggle, cuddle, and throw kisses. She has learned to throw tantrums, and now hates her veggies. :-) Happy 17 months Gorgeous! I love you very much!

2011-10-29T10:07:00.000-07:00

Gorgeous

My Gorgesous is growing up so fast. She is becoming such a little lady. She's my smiley, laughable, mischevious, & vocal little girl. I'm lovin' her to pieces! :-)

2011-10-23T20:36:00.000-07:00

FALL FUN

Here's our back yard pile of leaves. I think the girls had a bit more fun than the boys. Savannah wouldn't let me stop taking pictures until I got one of her in mid-air! :-)

We also had fun at the Gigi's Playhouse halloween party. I'm pretty sure I had the best looking ladybug there! Sunday night, we tried our hand at carving actual stensils in our pumpkins. We usually free-hand it, and I'm thinkin' that's the better option for next year. :-)

2011-10-19T19:20:00.000-07:00

New Toy

Gracie got a new toy today from a good friend Mrs. Elaine! We first let her try it on the hardwood floor, and she went right to work! I think it's a little harder to push off of on the carpet though. :-) I'm hoping this helps her realize what fun she can have if she actually walks. I'm sure it'll come in time once her legs strengthen up. On the other hand, Gracie and I made a packed that we'd do our best to hide our new toy when our P.T. pays her weekly visit. LOL! Yep, as you can probably guess, Miss P.T. hates those things (and everything to the sort) with a passion. They're all evil & sinful & can do more damage than good....except for those few good things they do. HAHAHA, honest she has said that before. There are days where she makes total sense; then there are others when, well....ya know. :-) Thank you Mrs. Elaine for our great new toy. We will absolutely LOVE it!

2011-10-18T17:07:00.000-07:00

HAIR-CUT

I have been waiting for MONTHS to get my hair-cut! And I finally got to this morning. I was growing my hair out while I was training for my marathon. (I wanted to be able to pull it back on race day). Now, this cut isn't exactly a new style; just a little shorter than usual. I love it! I'm hoping my hubby likes it more than I think he will. :-)

2011-10-10T15:10:00.000-07:00

My First Marathon

I am proud to call myself a marathon finisher! I was getting a little worried that I wouldn't be a finisher for two reasons: 1) I had gotten myself physically ready, but at one point I felt like giving up. I was beyond exhausted, and saw no light at the end of the tunnel. 2) A week before the race I snapped out of my "mind games" and was totally psyched about the race & couldn't wait for it. However, I hurt my foot, and could barely walk on it. So, again, I panicked about not being able to run. Thank God it felt good enough to run on Sunday, but now I'm paying the price. LOL! We went to Chicago on Saturday, so we could just chill out before the race. We roamed the city for a few hours: took pictures, went to NIKE Town, and went out for dinner & ice cream. Ryan's mom was nice enough to buy him some much needed tennis shoes from the NIKE store, so he wouldn't hurt his feet on Sunday. Umm, ya, you should see his old ones....not a pretty sight! Hahaha! He sure did appreciate it at the end of the day yesterday.
I knew there would be TONS of people at the race. I didn't realize just how many were there until we got to a slight hill & I could get a good look at the bridge. All you saw were PEOPLE! It was amazingly crazy! I think it was then I knew how important this race really was...not just for others but for me.
Mary (my running buddy) and I had an easy first 7 miles. I think around mile 9 I turned my focus on where to look for our families. They kept us updated on where they'd be so we could stop (if needed) and see them. At mile 11 we saw my mom, Alicia, & Ryan waiting for us with water and bananas, and did an awesome job of cheering us on. Between mile 14 & 18 I started praying that we'd just be finished. Mind games started, and I felt like quitting. Mary wouldn't let me. At mile 20, I was in pain, my legs hurt, but more so my foot. I figured out the faster I ran the better my foot felt, but the worse my legs felt. We did a lot of walking after mile 20. However, Ryan assured me that my baby Gracie was waiting for me at the finish line (Ryan's mom came with us) and had her cute little 'go-go-go' cheer ready for me. :-) It made me smile, and get my high-tale going. Around mile 22 Mary was calling people for words of encouragement and I was texting updates of where we were. At mile 24 we were getting nauseous & just wanted to be done. My baby was at the finish line so I kept going! At 26.2 we were DONE! It was such an amazing feeling! I had accomplished something I didn't think I had in me. I.HAD.FINISHED.! People think you're crazy for running a marathon. Yes, I will agree it is crazy! But it's a good crazy. I would definitely do it again. However, my plans are to try and run a marathon every 2 years. It takes a lot of time and work and energy to get ready for a marathon. So every other year is good for me, so I can still focus on my family and work on other goals that I have.

2011-10-04T18:01:00.000-07:00

Not So Fat...In Eyes of a Child

I started babysitting on Tuesdays, and I think I'll absolutely LOVE it! The first day the kids were a little timid, but quickly warmed up to us & the house. Now they are more than comfy cozy. Which makes me happy! :-) (I was a little worried about that).

I just wanted to share a little tid-bit of a conversation that was held tonight:
L (while pointing to a picture of me) says: "Amber why are you not so fat anymore?"
Me (while laughing): "Cause I'm not pregnant anymore".

I'm glad that I'm not fat in the eyes of a child anymore. I don't like those fat memories (preggo or not preggo). So it was a nice little compliment that made my evening, and I don't know that he even meant to say it in that way.

2011-10-02T14:48:00.000-07:00

Quite The Little Lady

Gracie turned 16 months yesterday. She's quite the little lady, I must say! All she has to do is bat her bright blue eyes and instantly gets what she wants. I'm sure we'll regret it later! LOL
We've had a rough few weeks of being sick this month. Gracie came down with a cold & pink eye, and was put on a couple different antibiotics. A week later she got the flu. The poor girl hardly ate for a couple weeks, and is just now feeling better. She does have a weak immune system, but I really hope this doesn't set the tone for the winter.
Gracie has gotten a few more teeth since last month. I was shocked to have noticed (I'm assuming a few days late) that her right lower molar was all the way through yesterday, and the left one poked through today. Amongst a few other teeth almost ready to pop through. There seems to be a light at the end of the tunnel with the teeth!
Gracie also had fun being dressed up for her first fashion show hosted by Gigi's Playhouse. Nana, A. Ali, A. Hollie, & cousin Allison had fun taking her while mom & dad went away for their anniversary.
Although, I wish I could freeze time, and keep Gracie this age for FOREVER, she is growing up fast. She's becoming quite the little lady in our household, and is developing into her own personality. I can't wait to see what this next month holds for her. Crawling, inching her way down the couch, walking with help? I guess we'll just have to wait and see, huh!?! I love you baby girl, now and forever!

2011-09-25T19:03:00.000-07:00

Doubting My Marathon

Here is my almost complete marathon outfit...just missin' the shoes. I am running my first 26.2 miles with 'World Vision' in the 'Bank of America Chicago Marathon'. I am super nervous, and don't feel like I'm ready to run at all....emotionally or physically (even though I have been training hard for months now). I have come up with several reasons why I should quit, but then I remind myself of the 3 most important reasons why I should: 1) I am most definitely running for my daughter Gracie. She has more than blessed my life, and this is one of the ways I can give back to her. I LOVE her more than words can say! 2) I joined Team World Vision to help raise money and awareness for people in Africa who don't have clean water to drink. I think we sometimes take our drinking water here for granted. AND #3) I was raised to not be a quitter. None of my reasons thus far has qualified me to quit. So here I go, hittin' the pavement/treadmill hard with two weeks left to train. Lord willing I'll make it to marathon day, and finish with a good sense of accomplishment!

2011-09-15T08:24:00.000-07:00

Eventful

It has been an eventful week around our house. I took Gracie to the urgent care on Sunday afternoon, and was given medicine for 'pink-eye'. I have no idea where she got it! Germs, touching things & then touching her eyes, I honestly don't know. The possibilities are endless... By Sunday night she was hit full force with the virus that has been going around. Needless to say, she was up all night (Sunday night & Monday night). This is the sickest she's been in her whole life (well, beyond her regular medical things...heart, D.S. etc.). The poor girl ran 104 temp. & 102 while on tylenol. She was just miserable! We took her to the doctor on Tuesday, and was given antibiotics, a different kind of eye-drops (I guess the eye-drops that the urgent care dr. gave her could have done more damage to her eyes than good to them), and was given other suggestions on how to make her feel better. Today, she is doing much better...not 100% but doing better. Thank God!
Monday was our anniversary. We had planned to go to dinner either Monday night or Tuesday night --- depending on if & when Ryan was home. Either way, we were to tired to go out both nights due to the baby being sick. Looking forward to our w/end getaway...assuming neither of us gets sick.
Also, one last thing, my Aunt's mom passed away yesterday. She had had alzheimers, and is once again with her husband praising the Almighty God we have. We were blessed to have known her, and have had her be apart of our family. Prayers to my aunt and her family.

2011-09-12T17:49:00.000-07:00

Happy 2 Years!

Two years ago today I married the love of my life! I can't believe how fast the time has gone. But, boy, has it been busy! In the last year we have kept up with Gracie's health (appointments, therapies, etc.), moved into a house of our very own, Ryan took on a new job (and enjoys it), I got to quit my job (what a blessing), and so much more. I am very blessed to have Ryan as my husband. I can't say enough on how supportive & loving he's been. I'm enjoying every minute of being married to him, and can't wait for many more years of marriage! I love you very much Ryan! Thank you for marrying me on this day 2 years ago. You are one of the best things that has ever happened to me!

2011-09-02T15:35:00.000-07:00

15 Months

I missed Gracie's 15th month post yesterday. I think my last post made up for it...at least I think so anyway. Last Sunday morning she woke up and decided she was ready to "army crawl". In the last 15 months we have watched her grow into her own little personality. I hate to say it but she is a mini-me! She does things when SHE wants to...she is on no one's time except hers. Gracie will definitely give us a run for our money. I wouldn't have it any other way though! She's my sweet, adorable, perfect, gorgeous lil Jo-Jo! I love you very much Gracie, and thank God for you every day! Happy 15 Months my dear! :-)

2011-08-30T20:38:00.000-07:00

THE ARMY CRAWL

This video was taken from my phone....hence the poor quality.

Gracie army crawled for the first time Sunday morning. I can't tell you how excited, thankful, even grateful we felt to see her do that. I know many people think I am crazy to get beyond excited over simple stuff like "crawling". But if they only knew our lil' Gracie...they would know it's absolutely amazing. Good job baby girl! You're doing fantastic & progressing beautifully! Much love Gorgeous! :-)

2011-08-04T11:38:00.001-07:00

1 YEAR POST-OP

Today marks the 1 year anniversary of Gracie's open heart surgery. I remember how scary it was to walk into the hospital that day not knowing whether I'd walk out with my baby girl in my arms. I held her snug against my chest...my heart all the way into the pre-op room. I didn't want to let go. I remember we prayed, prayed again, & prayed some more. I remember telling myself to keep it together while Ryan and the nurse pryed her from my arms so they could take her back to the operating room. I was on the verge of telling them to forget the whole thing...cancel the surgery....God would heal her heart without the surgery. But, as I sit here 1 year later, I thank God I didn't do that. Little did we know that August 4, 2010 was the first of very many days in the hospital. Again, I thank God that she was able to be there in the care of all those wonderful doctors and nurses. God has done wonders with my lil Gracie. She is healing great! We are NOT on any medication at this time, and according to the echo last month there isn't a residual hole that was there since surgery. I pray her leaky valves & narrow veins fix themselves also. My Gorgeous is a little fighter! She's stubborn like her mother, and when she knows she wants something she won't quit till she gets it! She never ceases to amaze me! She's learning something new everyday. Our recent accomplishment was holding onto the couch and pulling up. :) Way to go Gracie. You are my Gorgeous! Keep on fighting, and you'll be able to do anything you put your mind to! Praying that God continues to use you in a mighty way! I love you!

2011-07-14T17:39:00.000-07:00

RYAN'S TRUCK

Ryan is finally on his own truck. I can't tell you how excited he seems to be off of orientation/training! He seems to be doing well. His only complaint so far has been "dispatch" has him making runs in the afternoon/late night. He would rather get started early and be done at a decent time. But he'll take what he can get. We are grateful that he has a job, finally has his own truck (per say), and his pay should be going up a little. They gave him a route that ended in Crystal Lake the other day, and gave him permission to park his truck in the Harvard Walmart parking lot so he could sleep at home. It was soooo nice to have him home even if it was only for a short time.
Above are a few pictures of Ryan showing us his truck. It's actually pretty nice inside. There's a bunk bed, space for a tv - cooler - microwave, etc. It fits all his basic needs (minus the potty, obviously, lol).
I felt bad when he was home though. Gracie sure did seem upset with Ryan. We weren't sure if she was mad at him for not being home as much or if she just wasn't sure who he was because his trips home are far and few between.
On the other hand, I am very proud of Ryan. He is doing everything he can to support us, so I can stay home with Gracie. It is very hard on all of us with him being gone so much. We pray that the time comes quickly where he can work locally whether it's driving or police work (which he is still applying to departments, and is almost done w/ his bachelors degree). I love you Ryan. You are the best husband in the world, and thank you for working so hard for us! I appreciate it! :)

2011-07-05T18:08:00.000-07:00

Jo-Jo On The 4th of July '10 & '11

4th of July

2010

4th of July 2011

Here is my Jo-Jo on both of her 4th of July hoidays.

2011-07-05T17:58:00.000-07:00

Birth to 1 Year

This is one full year of my Gorgeous growing up. Can't believe she's already a year old!

2011-07-01T17:53:00.001-07:00

13 Months Already

My little Jo-Jo is 13 months old today. It seems like time flies way to fast! :) This past month Jo went on her very first vacation to Kentucky. She absolutely loved it! She got to go boating, swimming (in a lake), and got to do some sight seeing. Jo-Jo did very well considering she was teething. She got her 4th tooth while we were on vacation. Lucky her!
She was also sick quite a few times this past month. Between teething,a throat virus, and 2 blue spells. I also took her to the cardiologist for a check up...twice. Both visits went great! Although, the second visit was due to her blue-spells. They did an echo and couldn't find the hole that has been there all along. Also, her narrow veins and leaky valves have improved. Good News---Good News! We go back in September for another check-up.

I can't believe how much she has grown! I love her soooo much, and want to wave my magic wand and freeze time! Happy 13 Months my dear Jo-Jo!

2011-06-30T15:42:00.000-07:00

Yummy Dinner w/ A Black Eye

Here's my lil Jo-Jo lovin' her some pasta for dinner. She gobbled it up! I guess she takes after her momma....favorite food ever!
Also, my poor Jo got her first black eye this morning. Her P.T. was working with her, and had a toy drop onto her face. The toy was set up off the floor, and she was pressing the buttons. She must have pulled it towards her, and it fell and hit her eye. We felt really bad!

2011-06-29T18:22:00.000-07:00

WHERE'S THE HOLE?

Gracie was sick, yet again, last week. We concluded, after spending a whole 2 minutes with the pediatrician, that is was a throat virus. Although, this throat virus caused all the normal sickies (fever, sleepiness, crankiness, loss of appetite, etc.), it also (according to the cardiologist) caused her to have a 'blue-spell'. Two of them as a matter of fact. She has only had 1 or 2 other "blue-spell" episodes since surgery last August. So it is still scary and of concern for this momma. We took her to the cardiologist yesterday due to these "blue-spells" to make sure nothing major was going on. They did an echo, and actually found some improvement. The narrowing of the veins & leaky valves are still present, but better. They also did NOT find the residual hole that has been there since the repair was done (in August). It made the tech a little nervous that she couldn't find it, so she spent a little extra time looking around. The doctor also looked at the echo and agreed that he couldn't find it either. To be honest, in a way, it makes me nervous that it's not there. On the other hand I'm excited that it healed by itself. In all my nervousness I am trying to praise God that it is healed. We go back in September to do another echo...praying & hoping for more improvement. Thank you all for your prayers. They are appreciated, and very much welcomed here. :-)

2011-06-01T17:26:00.000-07:00

HAPPY 1ST BIRTHDAY GRACIE JO

My Sweet Gorgeous Gracie-Jo turned 1 today! I am so happy for her that she made it to her first birthday. There were many times where I didn’t think she would. The poor girl has been through more than any one person should have to go through.

She spent four days being monitored in the NICU after being born. She had some tests done (Echo’s, EKG’s, and a car seat test) before she could come home. We thank God on how amazingly well she did. She pulled through and didn’t have to have the first surgery they thought she might have had to have.

Our little Jo-Jo had several “blue-spells”, so they went ahead and did open heart surgery when she was 2 months old. Let me tell you, as a mother, I wouldn’t put that past my worst enemy. It was a horrible experience! However, I thank God for the doctors and the technology that we have today. If it weren’t for both of those, Jo wouldn’t be half the person she is today or maybe not even be here at all. She did develop pulmonary stenosis while at the hospital, and has leaky valves. So she will be facing at least two more surgeries; not including the possible tube(s) placement she’ll have to have put in her ears.

She has had therapy since she was born. So far she’s just had speech & physical therapy. We might get more as she grows up. We spent 10 months with two therapists, but had to switch due to moving to Harvard. Believe me, they were great! We had a hard time making the switch, but I’m sure we’ll like the new ones just the same! J

I’ve had a hard time believing she’s 1 already. Everything has been go, go, go. I’m not sure I’ve really had time to really soak in what all is going on with her; especially, her down syndrome. Sometimes I wish I could just freeze time, and keep her this age FOREVER! J

Happy 1^st Birthday my Gorgeous! Happy Golden Birthday! I hope it’s a great one for you. You deserve nothing but the best. I love you very much!

2011-05-08T19:56:00.000-07:00

Happy First Mother's Day

I was feeling a little (ok A LOT) sad yesterday because Ryan wasn't suppose to be home for my first Mother's Day. To be honest, I had an image of what my Mother's Day would look like. You know: flowers, breakfast in bed, a little gift on the side, & my family just being together all day. I did get flowers delivered to me on Friday. However, they were looking kinda sad. I was reluctant to say anything to Ryan, but had decided to try and gently tell him only because he had gotten me flowers for Easter that are still going strong (obviously from a different shop). He called the shop or company that he ordered his Mother's Day flowers from and got a refund. And come to find out they had delivered flowers that he didn't pick out. It was a good attempt though. :-) He then "surprised" me by coming home on Saturday evening. Well, he tried to anyway. I figured it out when he was about a hour away from home. :-) It made me feel better that he was home to spend my first Mother's Day with me and Gracie. In the end I think that's all I really needed for Mother's Day. I really didn't need any gifts or anything....just my family being home together. That was a nice...special gift for my first Mother's Day. We also enjoyed an awesome lunch (made by the guys)....Josh's famous ribs. YUMMY!

2011-05-03T18:28:00.001-07:00

PRAYING FOR HEALING

My Gorgeous has been sick for quite some time now. I want to say it started when we moved to our new house at the beginning of April. There are a lot of things that attribute to this: # 1 moving (new surroundings), # 2 her daddy left for orientation for a new job & isn't home much (we miss him VERY much), # 3 previous owners had cats in the house (which is paying its toll on both of us), # 4 the whether can't be helping, # 5 we had to go out of town for grandpa's funeral, & lastly (I think...I hope) is she came down with this horrible infection. She has been running temps. of 102 - 103 (almost 104) off and on for about a week and a half now. She has also been cranky and I mean CRANKY (which is unusual for her) for a long time! We have passed it off as everything stated above, and you know the virus that has been going around lately. Well, this past weekend, she developed a high fever (as I said before) *sigh* along with a red spot under her chin (that faded in & out). I took her to the doctor this past Monday & the Monday before that. Both times they said it was a virus with a possible ear infection. After I got home from yesterdays appointment she started to whine & cry, and would not stop for anything. I tried everything in the world you could think of, but nothing helped. Sleep has been long gone forgotten about....we don't even know what that is anymore in this household. By the time I got to mom's house for some Nana & Auntie back-up help the red spot spread up to her cheek and swelled up. Yay, for us we landed in the ER (sarcasm-sarcasm), and back to the doctor's office this morning. They seem to think it is a skin infection called cellulites. We have been given an antibiotic that is strong enough to handle most anything that is going on in her little body. At least that's what we are aiming and hoping for. If this doesn't work in the next couple of days we go to plan B which is IV antibiotics. Praying God heals her over night. My poor baby Gorgeous is miserable. I hate seeing her in pain. I want her to feel better so we can move onward and upward to getting some sleep and being back to our normal selves. We want our routine back! :-)

2011-05-01T18:38:00.001-07:00

Let's Freeze Time

Shall We?

My Gorgeous Gracie turned 11 months today. Call me sappy, but I wanted to cry alllll day. I really wish I could freeze time, so she'll stay this small forever.

This past month Gracie has had to adjust to moving into a new house...in a new town, has had to (attempt) to adjust to daddy being away for his new job, has had to give up 2 of her therapists (who we will miss a lot) due to moving (she'll start w/ new ones this week), and seems to have been sick/cranky almost the whole month. I give her credit...she has done amazing with all that she has had to overcome this month though.

Happy 11 month Birthday my Sweet-Gorgeous-Gracie! It's hard to believe you'll be 1 year old in a month. *sniff-sniff* I love you very much!

2011-04-25T18:58:00.000-07:00

Happy Easter 2011

We had Easter at our new house this year. I was excited to be hosting my first 'family' dinner. It was fun! We had a lot of YUMMY food including: ham, smoked salmon, a couple of casseroles, salad, rolls & dessert. We enjoyed family time, an Easter egg hunt, & my sister even helped weed one of my gardens. And to top it off I really enjoyed and was really excited that my hubby got to be home for Easter. It was really special to Gracie and me as we have only gotten to see him twice in the last three weeks. (He's been away for work training). I am blessed to have such a great & loving family. It was great having everyone here!

2011-04-18T13:35:00.000-07:00

SURPRISE

I got a call from Ryan yesterday afternoon asking if I wanted to meet up with him. He said that they were driving through the area where his schooling was, and was going to be there for a few hours. So I drove the 2 hours to where he was (very fast I might add---all the while praying I wouldn't get pulled over. lol). We were excited to see him, especially Gracie. She was so excited she could hardly stand it! She couldn't stop smiling. We had dinner, and just hung out for a few hours. It was GREAT! Such a nice surprise! We were two happy campers...until we had to say good bye of course.

2011-04-16T15:57:00.000-07:00

DADDY / DAUGHTER CONVERSATION

Ryan has been gone for 2 weeks. We've had a rough time with him being gone. However, we do get to talk on the phone and skype daily. Ryan had called us this morning at breakfast time, and I captured a little bit of a daddy / daughter conversation. It was cute, because before I started taping every time Ryan would talk to Gracie or say her name she'd smile. You can't say she doesn't know who her daddy is! :-)

2011-04-04T20:52:00.001-07:00

10 Months Old

Geez-thoweez (sp??) I forgot to write Gracie's 10 month post! We were moving on her 10 month birthday. How exciting, right!?! Not for her....she's not liking the change all that well. She's been cranky for the last week or so. Gracie wants to be held most of the time, and still cries. She has never been like this. So I think it's safe to say she's just like her momma ~ change is not very well taken. Although, this is a good one, so hoping she gets adjusted quickly. She is also adjusting to her daddy not being home. As he went to start a new job, and is out of town right now. Gracie LOVES to skype with her daddy, though. She has had a couple of rough days, but when we all get on skype she is all smiles. I love how much they get along. I admire them for being so close. I hope it stays that way. Besides the move, we've only had a couple of doctor's appointments at the beginning of the month, and don't have to go back until June. She is getting so big, and is the same ole' smiley-cuddly-smoochable baby she's always been. Happy 10 month birthday my Gracie girl. I love you so much!

2011-03-15T20:21:00.001-07:00

SNEAKY

I have discovered that my baby Jo is sneaky. I guess I have always known this, but didn't want to make it reality (hahaha). The first time I remember her being sneaky was when she was starting to roll over from back to front. I had seen her front to back, but not back to front. Ryan kept saying she was rolling over, and then one by one everyone else saw it. It took her a long while before she'd show me.
This week she's been sitting up (from a lying position) on her own. We've been working on this with the therapist and all for a few weeks now, so I knew she'd get the hang of it real soon. The other night Ryan and I were organizing her room, so we could move things over to our new house. Meanwhile, Jo was lying in her crib playing. At one point I looked up and saw her sitting, but thought Ryan had sat her up before he had left the room to get something. By the time Ryan got back Jo had done the whole process again, and he started praising her. So I knew he hadn't sat her up. Ever since then, Ryan has seen her do it many of times. How many times have I seen it? Z.E.R.O. times! I think I might have a sneaky one around here. LOL

2011-03-14T15:51:00.000-07:00

Hosting Easter Dinner

I am super excited to be hosting Easter dinner this year. We will be in our new house by then, and hopefully settled. :-) I know it might take awhile to get there. However, I know I won't stop 'setting up house' until it feels like a home. So I have set Easter as a goal to get everything organized to our liking.
The question is, I'm not quit sure what to make. Turkey is the only thing that comes to mind. On the other hand, I honestly can't say that I've made something that major. I know you're probably laughing, but I really don't want to make something that is 'everyday' (if you kow what I mean). In the midst of your laughing, :-), can anyone give me any ideas of what to fix for Easter dinner? Or is turkey a good idea, and is it semi-easy to make?

2011-03-09T18:17:00.000-08:00

A TRUE BLESSING

I got together with a friend this afternoon. We had some good conversation. I've been privileged to have known her a good portion of my life, and have really gotten to know her more over the last few years. I admire her so much...more than words can really say. I admire her strength, her faith, her dedication, her love for God & others, there's so much more I could write. I met up with her thinking that I would be the 'encourager', but I came out encouraged. It's almost impossible to put into words what she really did for me this afternoon. I've been really struggling lately with a few personal things, and didn't really intend to spill my guts out to her. I wanted to be the listener this afternoon. However, conversation got going, and there I found myself relating to her. She put things into perspective. I came home thanking God for what I have. I came home thanking God for our friendship too. This friend, also did a very noble thing. She hasn't been in the best financial situation. However, she is very excited to know that Ryan and I will be closing on our house soon, and gave us $100 to put towards 'a special something' for the house. I was told not to refuse or rebute it. And if you knew my friend you know not to fight with her. So I willing took it (well, it was hard, but knowing I wouldn't win I took it). What a blessing, huh!?! Thank you so much 'special friend'. I love you more than words can say! May God do big and wonderful things in your life.

2011-03-07T18:20:00.000-08:00

A MILESTONE GREETED WITH EXCITEMENT

Gracie had an eventful day. First off, she cut her first two bottom teeth! Who knew milestones could be this exciting! :-D I am so happy for her. Not only for the fact that she has her first two teeth, but because she is in such a GREAT (better) mood this evening. We now know why she has been soooo sick this week. Poor baby girl! I hate seeing her so sick. I'm glad she is feeling better.
Gracie also had a good report from her doctors today. She went to the ENT & cardiologist. Dr. Walner (the ENT) said that her canals are still small (which is normal for babies with down syndrome). After using his 'special' instrument, her left ear was still o.k. and her right ear had fluid behind her ear drum (this ear had an infection the last visit). Dr. Walner wants to discuss tubes when we go back for a follow up visit in June. He just feels like the tubes wouldn't fit right now, b/c of really small canals. Doc also cleaned her ears out......the inside that is. What a guy, huh!?! ;-) No more wax...hahaha! As far as the cardiologist, they did and EKG and an ECHO. They are keeping an eye out on the right side of her heart. They don't want it getting twice the normal size (if that makes sense). This may sound like a 'duh' moment, but if it does get that big it means that it stretches out so much it doesn't contract enough to do it's job. Dr. Neuberger (cardiologist) used an interesting example to better explain it. He said, "Take a rubber band for example. You stretch a rubber band out as far as it can go, and leave it there for 2 years. You then let it go (or unstretch it) it will only contract a little bit. It won't do what its suppose to do...it wouldn't do it's job." The heart is the same way. If it stretches out so much it won't go back to normal w/out help. So they are watching it. Also, Gracie still has pulmonary stenosis. They will eventually need to put a balloon in to open the branches up. Dr. Neuberger thinks they might need to do this in about a year or so. They then can (or will) fix her narrow leaky valves. The valves are a concern, but can wait to be fixed in hopes that they grow as Gracie grows. We shall see.....Lord willing she'll do amazing (like she always does), and she won't need major surgery. :-)

2011-03-01T19:45:00.000-08:00

HAPPY 9 MONTH BIRTHDAY

My Gorgeous is 9 months old today. Poor thing has been sick with a cold since Sunday. So, Gracie spent her 9 month birthday sleeping, and following up with her new pediatrician. Besides having a cold she is healthy, and will have her 9 month wellness check up next week.
This past month my Gorgeous Gracie has done absolutely AMAAAZING with her therapies. She continues to have physical therapy twice a month. In which she makes tremendous improvements. Gracie is a quick learner (if that's the proper way to say it....hahaha), and picks up on things within no time. Kim, her therapist, is excited about how well she's doing. And then again, so are we! :-) Gracie has started her speech therapy this month also. Her therapist, Holly, came and showed us some exercises to start off with, and helped conduct a feeding schedule. The feeding schedule is being attempted....she loves to play with her food (blowing raspberries, spitting it out at you, etc). She also attempts to whine her way out of eating so she can have her bottle. She had learned that she'd get a bottle right after eating, so she whined until I gave into her. She then laughed at me when she got her bottle. Hmmmm, like she doesn't know what she's doing. On the other hand, Holly told me not to give Gracie her bottle until 30 minutes after she eats her baby food. That way she'll quit relating her bottle with eating, and actually eat her food.
Other than that, not much has happened this past month. Gracie is getting so big, and is growing up way to quickly. I wish I could freeze time. I love you baby girl. Happy 9 months!

2011-02-26T13:42:00.000-08:00

WE GOT OUR LOAN APPROVED

We just found out this past Thursday that our loan got approved. Thank the Lord! So far it has been nothing but trouble with this mortgage company. However, we've been told that's usually how it is. It was hard & painful (if you will) to get through it all. From our loan officer canceling on us twice to sign the application papers. (I'm not sure we'll really know the reason why, but we'll give her the benefit of the doubt). To the underwriters needing a new piece of paper signed just about every day. The last piece, in which the loan officer did take care of was the most comical, she wanted a letter stating the difference between 'Advocate' and 'Good Shepherd'. It could possibly be a hospital within a company. :-) Anyway, we are looking forward to closing on March 31st. Not looking forward to all the packing, but the excitement will make it go so much faster. We are so excited, and praying for less hassle. :-)

2011-02-17T11:59:00.001-08:00

FEELING SPECIAL

I have the most AMAZING husband in the world! He not only made me feel special on Valentine's Day, but he also included our lil' Gracie. I absolutely LOVE how he interacts with her and treats her. You can see how proud he is of her by the way he acts with her. She is daddy's little princess and has him wrapped around her finger.
I can't remember a time where Ryan hasn't talked about having daughters of his own. I, on the other hand, always wanted boys (4 to 5 boys to be exact). He would always tell me I was crazy, and say he wanted at least 1 girl if not all girls. I constantly remind him that I am not very pleasant (and more times than not we can't handle me...;-}) when 'Aunt Flow' comes to visit, (so what would we do with girls?). Well, God showed up and gave us a girl, and we wouldn't change it for the world! She is such a blessing (just as the meaning of her name states "a blessing from above").
Ryan took us to The Olive Garden for an early Valentine's Day dinner. It is one of our favorite restaurants to eat at. YUMMY-YUMMY-YUMMY! I then came home from work on Valentine's Day to a dozen roses, an 'I love you' balloon, a movie, and a card. He also gave Gracie Jo a pink piggy pillow pet. What a guy, huh!?!
I can't imagine life without my husband. I thank God everyday for him, and am grateful for everything he's done.
Thank you Ryan for being such a wonderful husband & daddy! You are my world, and I love you very much. Thank you for being my husband.

2011-02-12T20:06:00.000-08:00

Bank of America ~ Chicago Marathon 2011

I finally got enough guts to sign up for the "Bank of America Chicago Marathon" today. I have been running off and on over the last couple of years, and have wanted to attempt a marathon one day. We (Ryan & I) decided that this was the year for me to make it happen. I will be running with "Team World Vision ~ Algonquin". Once I know that I signed up the correct way I will be setting up some sort of a donation 'bank'. I am also making a personal commitment to running this marathon for my lil' Jo. As many of you (if not all of you) know, she has Down Syndrome & Tetrology of Fallot. She has gone through more than any child (or any one person) should have to go through. So I want to run for her too. Here's to my 1st Marathon....let the training begin! :-)

2011-02-01T09:39:00.000-08:00

GORGEOUS GRACIE IS 8 MONTHS OLD

Gracie is 8 months old today. She is growing up so quickly! My gorgeous is our fun, loving, huggable, & VERY kissable baby (she also gives lots & lots of smooches). She is, for the most part, a happy baby. For the exception of the last few weeks: she's been a little cranky due to trying to teeth and an ear infection. In the past month, (well week) she has also been to the cardiologist 2 times, b/c she has had 3 blue spells. Her echo turned out great with no changes. The echo showed a small hole from the patch job she had from surgery, and her valves are still leaking. That is nothing new, and surgery isn't needed for the time being (in the future.....way, way, way in the far future hopefully). The cause of the blue spells in really unknown; the doc's say that it's just what her body does. When she has her blue spells we are to look in her mouth, and if the inside of it is blue then something is wrong. Otherwise, nothing to worry about. As far as P.T. and all that, she is coming along just fine. She picks up her P.T. very well. The therapist gives her something to work on and she has it down pat in a couple of days. She is a little behind in O.T. They didn't give her points on a few things including: not being able to pick things up with her fingers (she does the hand grab). All in all she is doing great! I can't wait to see how she progress' in the next month. She has a NICU appointment on Thursday, so hoping that goes well. Happy 8 Months my Gorgeous! I love you!

2011-01-07T18:40:00.000-08:00

Happy Birthday Ryan

Today was my hubby's birthday....the big 3.1.! Old right, hahaha LOL! No not really. We celebrated by going to dinner at Outback Steakhouse (his birthday....his choice :-D). We then came home to eat cheesecake & open gifts. I believe it was a much needed (good) relaxing evening. Happy Birthday Ryan! I love you very much, and I wish you many more great birthday's to come.

2011-01-02T17:33:00.001-08:00

SEVEN MONTH BIRTHDAY

My Gorgeous Gracie turned 7 months old yesterday. I'm amazed at how far she's come. Gracie went from having cardiology appointments several times a month to going in 6 months. Our next appointment is in February. We are excited, but I personally am still a little nervous because it is so far away. I pray everyday that she'll stay as healthy as she was at the last appointment...if not be better by then. I pray even harder for full healing so we don't have to face another surgery in the future (which they say is more than likely). Gracie also had her last dose of home medicine this past Friday. It feels good not to have to get up in the morning and have those medicines be apart of our daily routine. I say we are done with home medicine only because she still has to have synergist (RSV) shots at the pediatricians office once a month until March. Gracie has turned a corner and has started gaining wait. I can't believe the pudgy little arms and legs she has now. At her last doctors appointment she was in the 18th percentile in weight and 10th percentile in height (or vice versa I can't remember). So she's petite just like me...I think that is the only thing she got from me LOL.

From the non-medical stand point, she has amazed us all with all she can do now. She rolls around like crazy! You can't leave her in a room by herself anymore. ;-P She goes from one end of the room to the other in a matter of seconds! My little Gracie is a love machine ~ she LOVES to cuddle, give hugs, and gives the biggest & wettest kisses ever. Her hair is now long enough to put in pigtails. It's the cutest! She also likes her bouncy seat (exersaucer) that she got from Nana & Grandpa Webb for Christmas. It has strengthened her legs so much that she will stand with help for a few seconds. Whereas before she was wobbly and would hardly take to standing. She is also sitting up with more control (still not perfect yet but we're getting there), and has more head control. She also gets physical therapy twice a month to help her with these types of things.
We also made our first trip to Gigi's Playhouse last week. I think we will like it once we've gone a few times and get familiar with it all.
I can't express how blessed we are to have Gracie. We want to thank everyone for their prayers throughout our journey with Gracie. She has definitely changed our lives for the better.
Happy 7 month birthday my Gorgeous Gracie. I love you very much, and can't wait to see what God has in store for you.

2010-12-29T11:11:00.000-08:00

Pig-Tails

I absolutely LOVE this picture. Gracie has been giggling recently, and I captured it on camera (finally!). I also LOVE the fact that I can put her hair up in pig-tails (or poney tails whichever you may call them). I know I might be a little (o.k. alot) bias, but she is so stinkin' cute!

2010-12-26T15:12:00.000-08:00

MERRY CHRISTMAS!

We celebrated Gracie's first Christmas this year. I was so excited for Christmas to come. I couldn't wait for her to open her gifts from us. She got a couple of movies, books, and a baby doll. (She was also very spoiled by her grandparents). We are very thankful for them, and all they gave her. Her favorite part of the gifts were the bows. She chewed on them all day long. It was a very fun & special Christmas!

Gracie in her Christmas pj's: "Babies First Christmas"

Her favorite gift of all:
a bow! :-)

Bouncy Chair From Nana

& Grandpa Webb

Gracie & her daddy on Christmas morning!

Gracie & I opening

our stockings.

A new dress from

Mammaw & Pappaw.

Sittin' in her bouncy seat w/ her Colts bow.

2010-12-11T10:57:00.000-08:00

Merry Christmas

Our 2010 Christmas card

This will be our first Christmas with Gracie. We can't wait for her to open her presents on Christmas morning! Yes, I know she is a baby, and she won't care or remember it. But it'll be fun getting pictures and all of her. Here's to makin' the memories...:-)

2010-12-07T19:32:00.000-08:00

Gracie's First Christmas Tree & Ornament

Here is Ryan showing Gracie her first Christmas Tree. They are putting on her very first Christmas ornament from Nana Webb. She was intrigued for a little while.

2010-12-07T19:14:00.000-08:00

O Christmas Tree! O Christmas Tree!

We have a family tradition around this time each year. We always go to Chili's for lunch/dinner, and then go pick out a Christmas Tree. This year we went to 'Richardson's Farm'. As you can probably tell it was bitter cold out! We started out on the wagon, and then walked up & down rows upon rows of trees. We finally found the perfect tree for us.

2010-12-06T19:24:00.000-08:00

Gracie Eats Cereal

Gracie's first bites of real food....well, rice cereal! :-)

Here are some of Gracie's first bites of "rice cereal". We got clearance from the cardiologist on Friday & ok'd by the pediatrician this afternoon to start feeding our lil' lady. The pediatrician's office was sorta surprised we hadn't started feeding her yet (now vs. at 4 months???). Then they remembered that the cardiologist wanted to hold off for awhile after surgery. They didn't want to rush anything with all the problems that we have been facing over the last 6 months. But here we are jumping one hurdle at a time! :-) God has gotten us through the last year or so, and He'll get us through everything else. We are very THANKFUL and BLESSED to be this far along with Gracie! :-)

2010-12-01T09:57:00.000-08:00

6 MONTHS OLD ALREADY

Gracie is 6 months old today. I can hardly believe it! She has grown up way to quickly! Grace is a very good baby. I think we are spoiled with her. :-) She is such a smiley baby (for the exception of when a camera is in front of her). LOL! She is babbling more and more each day, and is staying awake most of the time. She only really takes cat naps during the day, but sleeps all night. Can't get much better than that --- can ya!?! Her favorite toy is her phone rattle or her jungle gym. She'll spend hours with them both! My lil Gracie is still our blue eyed blonde hair fuzz head. Happy 6 months my gorgeous!

2010-11-26T09:28:00.000-08:00

HAPPY THANKSGIVING

Gracie & me laughin' away!

Dad & Gracie chillin' on Thanksgiving!

This was Gracie's first Thanksgiving. It was a great day spent with family. I had gone to do the "Turkey Run" (5k) with my parents and sister Ali that morning. While Gracie and dad (Ryan) stayed home in the warmth to bake/make a few things for our Thanksgiving dinner.

This year I am thankful for my husband, and all the hard work he has done this past year to support us. I am also thankful for my daughter, and her health. It's amazing how far she's come in the short 6 months that she's been here. I am truly blessed! :-)

2010-11-26T09:10:00.000-08:00

MY FIRST TURKEY RUN

506 was my number in the "Turkey Run" at Lippold Park yesterday morning. This was our first official 5k run; as my parents and sister Ali went as well. I was a little nervous for a few reasons. First off, I really don't like exercising in front of people. For me, running in front of people is the worst. I don't even like running in front of my husband! So this was a big step for me. But I did it, and I liked it! I was also nervous because I didn't want to be the last one to cross the finish line. I was afraid that there would be a huge difference between this run and my treadmill run. I know this race really wasn't meant to be competitive, but if you know me I am COMPETITIVE. The last thing that made me a little nervous didn't happen until we were about 1 to 1 1/2 miles into the race. Ali felt like she was having an asthma attack. We slowed down and walked until she said she was fine. She told me to go ahead, and that she would just go back to the car. Since she seemed fine at the moment I went on ahead, and finished the race at 30:29. This wasn't to far off from my treadmill run, so I am happy with this run & I would do another race/run if I got the chance.

2010-11-16T15:54:00.000-08:00

SECOND ROUND OF THERAPY

Gracie (Jo) had her 2nd physical therapy session this afternoon. She is doing AMAZING (if I do say so myself)! Jo is strong in most ways, but has some low muscle tone (especially in her upper body). We are working on strengthening her arms, and trying to get her to push up more (and hold it there). She has come a long way since her last P.T. session. She's loving holding her head up high more and more. We are also working on having her hold her head to the mid-line; as she tends to lean to the right (ear to shoulder). We are having lots of tummy time, using the boppy & bumbo, and can also use the bouncy exercise ball to help with both of these "problems". Lovin' the progress she's made already in such a short period of time! :-)

2010-11-05T18:55:00.000-07:00

Was It Worth It?

I have been at my job for 3 months now. Well technically 2 months, because I couldn't finish orientation in August, due to Gracie having complications after surgery, so I finished it in September. Anyway, it has been going well for the most part. Although, I have a hard time not getting bored sometimes. I am a "sitter". So I am basically suppose to watch the patient and make sure they don't pull anything out and stay safe.
I picked up the night shift tonight. I'm kinda wondering if it was even worth it. I'm already tired, and I haven't even started the shift yet. *sigh* I originally picked it up, so I wouldn't have to use my PTO (paid time off hours). I let someone pick up halloween for me, and didn't think anything of it. She didn't want to switch; she just wanted to pick it up. So I let her...thinking there was a code I could put in saying she would do so and I wouldn't take my PTO for it (like at my last job). I want to save my PTO for when I really need them (if one of us gets sick or if Gracie has an appointment or even vacation). I guess there isn't such a thing here. My boss let it slide for this time, but said for future reference I needed to pick up a day, use my PTO, or insist on switching. So all in all I picked up tonight so they wouldn't use my hours, because there are a few days I want/need off and I don't want to hassle w/ trying to cover them. If you are asking why I picked up a night shift and not any other shift --- it was the only one available for this week. Here's to hoping I make it through the night! :-)

2010-11-01T15:30:00.000-07:00

Happy 5 Months

Happy 5 months today my Gracie Jo! It's hard to believe how much you've grown already. You've gone through so much in your short 5 months; you are a miracle. You are an amazing little girl & a wonderful daughter. What's not to LOVE about you!?! I love you so much!

2010-11-01T15:20:00.000-07:00

HAPPY HALLOWEEN: 2010

Here's my lil' Jo dressed up as a "ZEBRA" for her first halloween. We really didn't do much: just walked around the square a little bit & waited around for dad to go through the haunted house, and went to see the cousin's costumes after that. I may be a little bias, but I think she looks to darn cute!

2010-10-27T10:08:00.000-07:00

HAVIN' SOME FUN WITH MY LITTLE JO

Jo and I had a little fun this morning. We let time get away from us while we played. I'm hoping our play time today put us both is better spirits for our afternoon; as Jo gets to go off and play with her 4 cousins & auntie, and I head off to work for the evening. Can't wait till we get back to playtime tomorrow. :-)

2010-10-12T18:57:00.000-07:00

2 MONTH SHOTS ~ YUG!

Gracie got her two month shots yesterday. Yes, I know a couple months late, but the cardiologists wanted to hold off on them due to surgery. So now we are playing catch up...whoohoo right!?! Hahaha, NOT! I was hoping that Gracie would be one of those babies that didn't get sick after her shots. My hoping didn't work out to well. I heard her whining in the middle of the night (she's been sleeping through the night more times than not ~ so it was odd for her to be doing so). Ryan got up with her, and not to much later he came back into the room in a panick. Her temperature was at 102 under the arm pit (I think you add one if it's taken under the arm), and she wouldn't stop crying. I called the doctor hoping it (and assuming it) was just caused by the shots the day before. He said to give her tylenol. So we have been all day. She does ok for awhile, but then the fever & the crying creeps back up again. Thank goodness my mom came over and got her to sleep for awhile. We're hoping for a better night tonight.

2010-10-06T18:42:00.000-07:00

A BLESSING FROM ABOVE

I had been tossing around the idea to look up blogs that focus on families who have children with special needs...children with "downs syndrome" to be exact. I've had this idea for months now. Well, since January I guess. I just never felt like I was ready to "plunge-in", and read about other people's stories. I've wanted to; don't get me wrong. But I just felt I couldn't do it. I was scared to. I feared everything....I still do to this day. However, the other day, I finally made myself look up a couple of them. I didn't read much into them, because it was a HUGE step for me to actually do so. But by doing so, I learned that October is "Downs Syndrome" month. There are a few blogs out there that are posting a little something about it everyday. Now, I can't say I'm ready for that, but I can at least share a bit of my (our) story, and how I'm feeling about my (our) precious little girl.

Our story starts back in January when we were sent to see a geneticist counselor. The two part chromosome test (blood test) came back a smidge different from each other, so Dr. C wanted to make sure everything was alright. She assured me that everything would probably be o.k., but just wanted the baby checked out. After doing a high level ultra sound and an amniocentesis, the results showed that our little girl "Gracie" tested positive for "trisomy 21" (which is downs syndrome). We also found out that Gracie had "tetrology of fallot" (a combination of 4 heart defects). She would have to have open heart surgery within the first 2 weeks to 6 months of her life.

I wasn't sure what to think or what or even how to feel. I think I felt so numb that I couldn't feel or do anything else. I didn't really know what to do. I just remember thinking I wanted to kill Dr. C for telling me my baby would most likely be "fine" when she wasn't. I remember being hurt and crying because I wouldn't have a "normal" baby. But then again, what is the definition of "normal" these days? Is there such a thing? I had nightmares for months. I would wake up screaming or crying, because I saw Gracie's death or funeral. I was to afraid of sleep, so my husband would often stay awake and hold me until he thought I was in a sound sleep for awhile. On nights where he just couldn't take the sleep deprivation I would be talking or texting my Genesis counselor. We would be praying or reading the bible or just plain talk until I pretty much fell asleep for a short time.

I had endless doctors appointments at Lutheran General (a specialty hospital). I was having 2 or even 3 appointments a week to make sure Gracie was growing like she was suppose to, and to make sure her heart wasn't getting worse. I'm pretty sure the first several appointments I was asked if I wanted to terminate my pregnancy. Although, there were several times where I wished God would just take her so she wouldn't have to live in what I called "agony", I never wanted to end my pregnancy. I got tired of being asked.

Ryan has/had always dealt with all of this much better than I ever have. Although, I am doing much better today, I still feel like there are times where I am in denial. She is our first child....this wasn't suppose to happen to us. Gracie's to stinkin' cute and lovable to have Down Syndrome. But it is what it is, and we are moving forward to live life to it's fullest. We are doing our best to give Gracie what she needs to live a full happy life.

God has put us on this journey for a reason. We may not know the reason now, but in the end it will be worth it. It is worth it just by watching her grow, smile, and learn new things each and everyday. We couldn't have gotten this far without our friends and family being there and praying for us. We are truly thankful!

Again, there are days where I struggle with and deny that there is anything wrong with my precious little girl. However, it's those days or weeks where we have countless doctors appointments, or visits to the ER, or admissions to the hospital that remind me of our new life style. This is our "normal". I can't say this is what we asked for (because in reality who would really ask for their child to have problems). On the other hand, this part of life is what God gave us. We are learning how to deal and get accustomed to what He gave us. It will be a never ending journey that I hope to one day understand. There is one thing for sure, we have always loved Gracie, and we will NEVER stop loving her. She is truly the definition of her name ~ "a blessing from above". She is our blessing from God. My heart melts for her each and every day. I love her so much!

2010-10-05T10:18:00.000-07:00

FUZZ HEAD

Here's my little fuzz head. Gracie's hair sticks straight up/out just like Ryan's hair does. It almost seems like she'll have strawberry blonde hair. I was hoping for dark like mine. But she's still as cute as ever & soooo lovable! :-)

Gracie started rolling over (from back to tummy) yesterday. She rolled over twice while I was cleaning the bathroom & showering. I thought it was just going to be one of her flukes, but nope she was rollin' over quite a bit.

2010-10-02T13:25:00.001-07:00

GRACIE'S 4 MONTHS OLD

Gracie turned 4 months old yesterday. I will update with a picture soon (my sister has my camera ~ so when I get it back I'll post :-)). This past month she has had a few more doctor's appointments, and a visit to the ER. The appointments turned out great ~ she's doing what she's suppose to be doing....getting better! We are down to seeing the cardiologist once a month now. Wooohooo! Although, she is growing & gaining weight, she didn't really make the charts. Gracie is below the 5th percentile in height (almost 23"), weight (11 1/2 lbs), and head circumference. They said that is OK as long as she is growing and gaining weight. The nurses and my mom keep reminding me that she is a preemie, she's had surgery, lost weight since surgery, and has down syndrome. So, that has a lot to do with her being small. Besides the point that neither Ryan or I are all that big. She doesn't really stand a chance on that one! ;-P The ER visit turned out well too. It was nothing huge. I think I just freaked out a little, b/c she wasn't eating all that much - sleeping more than usual - and her stats were a little off. So the nurse told us to just take her in to get checked out. They said she was a little dehydrated, and might have been coming down with a virus. We have to be really careful with her NOT to catch anything, because it could become something more serious & she would end up in the hospital. That is why Gracie has to have RSV shots from now until March, and everyone in the family or anyone who takes care of her has to get flu shots. Which is a killer b/c my sister and I both get sick from them. Soooo, what to do-what to do!?!
Gracie is more in tune with her hands. She likes to hold them like she's praying, and put them in her mouth. She tends to gag herself sometimes. :-{ Gracie also loves to sing & talk. She's little miss attitude, and lets you know when she's mad at you. Over all, she is doing well. She is a little behind in a few areas, but the things that she's not doing or not doing very much she's compensating in other areas. So they gave us some exercises to help that out. Plus therapy is coming on Friday to re-assess her, so she'll be able to catch up.

2010-09-23T22:14:00.000-07:00

Monster Truck

Today was day 2 by myself at work . The couple days that I've worked has gone pretty smoothly. The two patients that I've had have been very cooperative, and I've really questioned myself why I was there. But hey, work is work, and if it's that easy then it was worth it to literally sit there and watch a few movies while making some money.
Tonight's drive home was rather scary though. Driving home at night is one of the very few downers of the job. I was working at NIMC, so the only way home was the back roads unless I wanted to go all the way to C.L. to get to Wdsk. Well, right after I left the hospital this monster truck pulled up right behind me, and was pretty much tailgating me. The driver kept coming up on me and acting like he was going to pass me, and flashing his brights at me. So I called Ryan freaking out, "OK what do I do"? He asked me a few questions and then told me to hang up and call the cops. But as soon as he said that the truck pulled off. It didn't help that it was pitch black (hmmm, imagine that at 11:30 at night lol), and very windy.
So I'm really thanking God that I made it home safely, and now that I've calmed down a little I can go to bed, and get some shut eye.

2010-09-19T16:51:00.000-07:00

FIGHTING BACK THE TEARS

This is my first evening shift off of orientation. And yes, I had to try and keep from tearing up for leaving Gracie at home with daddy. I miss them both this evening! Can't wait to get back home to see them.
Surprisingly, the computer isn't blocking me from my blogger page. My shift is going pretty good; which means my patient is very pleasant. Yay, God was good to me tonight! :-)
I never would have thought I'd say this, but it feels kinda good to get out and go to work. Don't get me wrong, my dream job is to stay at home with my baby (and in the future babies). But it feels good that I am able to have gotten a job with Centegra (a VERY hard health system to get into). I am thankful that I got this job to help ease the financial burden for my husband. I just hope he feels the same way.
So, here's to making some pretty good money (and easy money at that). I get my base pay, plus evening pay, plus w/end pay. You can't get any better than that! :-)

2010-09-10T15:39:00.000-07:00

HAPPY WEDDING

One year ago today I married my best friend. It seems like it was just yesterday that we were standing before God, family, and friends exchanging our vows. I felt like I was in heaven. We were starting a new life; a life together. That day meant the world to me. I had waited my whole life for that 'special someone' God had planned for me, and that special someone was Ryan. Man is he ever special! There is nothing he wouldn't do for me. He has loved me in a way I never thought possible. He has put up with me when I'm at my absolute worst (and if you know me at all you know that's pretty bad! :-) I am grateful that he has stood by my side through this past year, as it wasn't easy. I'm sure Ryan would agree that one of the best, yet roughest, things that happened to us this year was the birth of our baby girl Gracie. We learned during my pregnancy that Gracie had down syndrome and Tetrology of Fallot (a heart problem). It has been a long ride, but so worth it for our baby girl. She is our Gorgeous lil girl, and very special. I bring Gracie into this post, because I feel so blessed to have gone through what we have with Ryan. As I said before it hasn't been easy, but he has walked beside me when he didn't have to. He has never once given up on me. And I am very thankful for that! Thank you Ryan for a great year together. It's been fun! Can't wait to spend many more years together. I love you very much!

2010-09-06T18:34:00.000-07:00

FAMILY DAY AT THE PARK

Gracie had her first visit to the park today. She slept for the first part of our trip, so we had a nice walk around the path of Emericson. It felt really good to just get out and about away from everyone & everything...just the three of us. Overall it was a great family day!

2010-09-01T18:42:00.000-07:00

Gorgeous Princess

I can hardly believe my Gorgeous Princess is 3 months old! Although, Gracie has had one "heck" of a month, she has grown up so much. Gracie is smiling more, talking more (okay, baby talk --- cooing more;-P), and somehow scooting herself around in circle's when she sleeps. She never ceases to amaze me!

As I mentioned before, Gracie has had one heck of a month! She spent nearly a month in the hospital ~ I think, 19 days total! She had her open heart surgery on August 4th. Her recovery time in the hospital was only suppose to be up to 1 week. Our Gorgeous Princess had an awful time bouncing back. Her blood levels were low, she developed hypertension of the lungs (fluid build up too), and so much more. She FINALLY got to go home on August 18th. However, she decided to pretty much stop eating by the time we got home (maybe 8 ounces in a day???). Which obviously caused her to lose weight. Which landed us right back in the hospital at her 1 week check up. I should learn by now that our "little-talks" don't work. ;-P Is that what I have to look forward to when she grows up!?! Man, I'm in trouble, but then again, she has been a stubborn one from the very start! Anyway, after nearly another week in the hospital, they got her dehydration under control & sent her on her marry way. Thank God! We got tired of living in the hospital! We had a check up with the cardiologist today, and everything looked great. Gracie is a little stuffy & has a cough, but the doc says that's due to her structure being small & her down syndrome. Hopefully everything will open up as she grows.

Thank you to all her prayed for us. We really do appreciate it!

2010-08-28T05:17:00.000-07:00

Seriously....A Month!?!

We had a follow up appointment this past Wednesday with the surgeon's nurse & the cardiologist. They did an EKG and an Echo to make sure her heart was functioning like it was suppose to post-surgery. They both looked good from the cardiologist stand point. However, she lost about a pound or so, because she wasn't to keen on eating the week we were home. They took a look at her medicines, but thought the best thing to do was re-admit her for dehydration. *sigh* The plan was to put a NG tube in to help supplement for what she wasn't taking in by mouth. Gracie had a video swallow test done yesterday. She did very well, but will be sent home on thickener to help her with her feedings. We are hoping she doesn't have to keep the NG tube in for very long. She just has to start eating more, and boost up the calories before they can take it out. Doc ordered for a nutritionist to come see her today, so hopefully we'll figure out a good plan and possibly go home today or tomorrow. It has been a VERY long month for all of us. We just want to be healthy & go home to STAY home!

Here is Gracie doing what she does best...sticking her nose in the air. She's to good for anyone & everyone! LOL

2010-08-17T16:33:00.000-07:00

Down To No Tubes

Notice in this picture there are no tubes, and no they aren't hiding under the blanket (haha). The last tube to go was her oxygen. The nurse turned it off at 5 this morning, because Gracie insisted on pulling it out (time & time again). She hated the tube in her nose. They were suppose to turn it off today anyway, so the nurse just thought it best to leave it off.
We are also crossing our fingers on going home tomorrow. YAY! The staff has been getting ready all day for discharge tomorrow. Hoping it stays that way! It has been a very long road already. But God has done amazing things. Although, this part of our life is not near over, He has carried us through this rough time. It has been a very long two weeks, but as you can see in this picture Gracie has done amazingly well. She continues to be our little fighter. Gracie will have a long road ahead of her re-guarding recovery. She will go home on at least 7 different medicines, and she hates them all. But at least we know it won't be a "forever" thing.

2010-08-14T16:41:00.000-07:00

MINNIE MOUSE

I love this picture! I love it, because she looks so peaceful & has her bestest friend right next to her. Gracie loves her Minnie Mouse. She has reached for her on several occasions. I think Minnie has been one of her comfort measures while in the hospital. We have kept her Minnie Mouse in her hands/arms as much as we can, because otherwise she goes for her tubes. (She likes to take her oxygen off the most ;-P).

I have been keeping up on her updates as much as I can through facebook (fb). But thought I'd write a little here too. Dr. Debrow (cardiologist) came in mid-morning, and checked her over. He seemed impressed with her progress the last couple of days. Her x-ray seemed much better this morning, and her echo (from yesterday or the day before) seemed better than the one from the beginning of the week also (not all the way perfect --- but much improvement). Those two things out-weighed the bad day & night yesterday. She hadn't slept more than 1 hour during the day, and was up & down a lot during the night. Feedings were a little off too. Dr. Debrow agreed with Natalie (the surgical nurse) that we'd just keep an eye out on both of those, and make sure she's pooping too. I don't think they pin-pointed what exactly was wrong with her. But I have an in-cling that the nurse had something to do with it. Don't get me wrong she was a nice nurse, but maybe would do better with adults rather than little children. A little rough around the edges. She just wasn't on top of things like the other nurses have been. Gracie has been resting comfortably all day. It is a very sleepy day! She needs it! We are weening off the medicine slowly but surely. Coming off one by one. Hopefully they keep coming off, and we don't need to bring them back thru IV. They have been introducing oral medications to her, and she hates them. Unfortunately, we're pretty sure she'll be going home on quit a few. Can we say BUMMER!?! Oh well, if it makes her better than we'll take what we can get. If you hadn't gotten the gist through fb; we are wanting to go home! Of coarse we want to go home when it's safe to, and when she's healthy. There's no place like home though. We've been here 10 days, and are tired-overwhelmed-anxious- and just plain tired of being here. I hate it here, really I do. I just feel run down, and am a little upset that several of the other patients have gotten to go home. I'm frustrated that it's not our turn yet. Please forgive me, I know it seems like I'm complaining. I do know this is the best place for her right now. I know she can't go home until they feel she's ready. They say mid to end of next week. *sigh* It's just been a very long week, and then to add in another!?! I sometimes wonder how much more we can take (or rather me). Gotta keep telling myself that she is getting better, and God is in control. Little Gracie has her own little time table; she's doing things at her own pace (as she always has & prolly always will). :-)

Prayer requests: 1) as I mentioned before we are tired & exhausted. so for strength to keep going. 2) that Gracie would continue to be on the mend & that things would continue to look up 3) that we'd be able to go home sooner rather than later. 4) that i would remember that God is in control and has his perfect timing. AND 5) Praise, that my job is letting me finish orientation with the next group in September.

2010-08-07T19:42:00.000-07:00

A Busy Day For Gracie

It was a very big day for my little Gracie. We have been told since Wednesday, "she should get her vent out tomorrow". In which it didn't happen until TODAY! Yay! No vent, feeding tube, or n.g. tube....just oxygen.

My Gorgeous Gracie is coming back to normal. Slowly but Shirly!

Gracie's Battle Wounds. She's a fighter! (Gracie also got her chest tube out this morning)

I got to hold Gracie for the first time since Wednesday morning!

2010-08-06T09:27:00.000-07:00

Still In

Morning ~ They have been trying to regulate Gracie's medications so they can take the vent out & the other machines off. The doctor said that she can't come off the vent yet. Which is a little (OK a lot) discouraging. He is hoping for tomorrow. Other than that he says everything looks like it's on track. We aren't in the clear yet, but getting there. *sigh* I'm at a point where I'll believe it when I see it, b/c they keep saying tomorrow-tomorrow-tomorrow they'll be able to take the vent out. And it's not happened yet. So we shall see. The nurse also said to look to not go home till maybe Wednesday now. The cardiologist on Monday told us most cases go home by Sunday. So I really had that in my head. However, remembering Gracie does have Down Syndrome, they may take a little longer to heal *sigh, again*. I know God will and is helping her and showing his mercy and grace. You'll have to forgive me; I'm just tired, frustrated, anxious, and overwhelmed w/ all of this. I'm not really thinking all that straight. :-{ She's getting an echo done right now, so will update after he reads it.

2010-08-05T14:36:00.000-07:00

Surgery

We had to check Gracie into the hospital at 5:45 yesterday (Wednesday) morning. The drive to LGH seemed to take hours! I have been dreading this day for months. I felt awful ~ sick ~ overwhelmed for my baby girl. I still don't understand why she has to go through all that she's gone through. But she is a fighter, and God has been with her.

These two pictures were taken right before the nurse took her away to surgery. I balled my eyes out, because I didn't want to give her up ~ knowing I didn't have a choice. They needed to fix her, so she could get better.

We got to see Gracie around noon. So the surgery was pretty lengthy. The nurse Laurie came out every hour to update us during that time.

The picture on the left was right after she got settled into her room. Lots of wires & tubes. The picture to the right is of a type of gauze. The missing circle is what they patched the hole in Gracie's heart with. It will stretch with her as she grows.

Gracie has been pretty agitated today. Lots of pain. She's been startling, and more awake (trying to play w/ the tubes). They are trying to get her medicines leveled out so they can try to take the vent out tomorrow (she needs to stay somewhat sedated until they take it out).

That is pretty much where we're at for the moment. Hoping and praying for a good day tomorrow. Wanting to get rid of some of these wires/tubes so we can go home soon (hopefully).

2010-08-01T17:44:00.000-07:00

My Special Gracie

Along with being 2 months old today we had Gracie's baby dedication at church today. It meant a lot & seemed very special to dedicate Grace to the Lord this week; as she's having her open-heart surgery on Wednesday. It is amazing on how many people are praying for her.

I love this picture, because as Pastor Len is praying, Gracie is holding daddy's hand and Pastor Bob's hand & Pastor Len at one point had his hand on her head. Very special moment! *tears* Thank you Pastor Bob & Pastor Len for helping us dedicate our lil' Gracie this morning!

Gracie's surgery is on Wednesday. The thought is very scary to me right now. I am beyond anxious & nervous about handing my baby over to the surgeons. I can't seem to think about it w/out wanting to cry about it. Praying for a calm heart...

We are very blessed to have such great family, church family, and friends. We couldn't have gotten through the last several months w/out everyone. We are thankful & very appreciative for all the prayers and support.

2010-07-29T15:28:00.000-07:00

My Gorgeous Gracie's First 8 Weeks

This is a collage of the past 8 weeks of my lil' Gracie's life. She's grown up so fast I can hardly believe it! :-)

2010-07-20T15:46:00.000-07:00

God Is Good

(This picture was taken yesterday ~ a day short of 7 weeks)

First off, my baby girl is 7 weeks old today. It has gone by way to quickly! She has grown up soooo fast. I can't believe it! Gracie has molded into her own personality. She is really laid back, and rarely cries. Although on a side note, she is learning to do that quite well. I have noticed just in this past week that she'll whimper if she discovers she's in the room all by her lonesome. She likes to be held, and is my little snuggle bug. Gracie has daddy wrapped around her finger! If she moves and/or peeps dad's right there picking her up (I think that's where she learned that she likes to be held;-)). Happy 7 Weeks Gorgeous!

Secondly, I came home this afternoon to the phone ringing. It was Centegra Health System. They wanted to offer me a job. YAY! I did (obviously) accept it. I think it will be a nice job to have. First, it will take some financial pressure off of my hubby. I am sure he is quite pleased & happy about my news! Although, my first choice would be to stay home with my little Gracie, but if I got a job this would be the one I'd pick. I'll be working 40 hours per pay period (3 days one week 2 days the next) on the p.m. shift as a patient companion. I will be making almost the same amount as I was at GSH (I think there's maybe $1 difference w/ the differential). So not bad at all considering I won't be doing all of the same tasks as I was before. I'm not sure of my schedule yet, as the recruiter said they'll go over that in orientation. There are only a few things that I'm nervous about, but I know God will take care of it (He has given me a job ya know ;-P). First one being, that I'll have to start August 9th, which isn't even a week after Gracie's heart surgery. However, I know she'll be in good hands that week between Ryan, mom, & Alicia. The second thing is that these few nights a week that I'm working we won't be able to have our family time like we're use to. It'll be just daddy & Gracie. Which in return could turn out to be a good thing ~ they'll get some bonding time. Ryan will also be able to get some school work done a little easier. So we are very much thanking God for making a way (and rather quickly) to a job for me...hoping I enjoy it!

2010-07-17T17:02:00.000-07:00

CAPTURING THE MOMENTS

(Yes, I did have permission to post these pictures :-))

Our First Family Photo

(Professional One)

I love this one b/c it's as if she's praying.

I love this one b/c she's looking directly into the camera.

I love this one b/c we captured a smile (she was only 2 weeks old when these pictures were taken).

We had our pictures taken professionally (by Karen Robbins) when Gracie was only two weeks old. Although, it was a little tiring, it was also a lot of fun. I feel we captured a lot of great pictures (moments really). It was unbelieveably hard to choose from all the pictures that we took. There was no way to even pick the best one out of the best. They are all so good. So here are the one's that we chose to bring home. :-}

2010-07-15T16:48:00.000-07:00

Hoping/Praying For This Job

I had an interview with Centegra this afternoon. They had called last week when I was in Indiana (Ryan had forgotten to tell me they did), and then they called again at the beginning of this week. Centegra is very hard to get into, so I took the chance and went for an interview. (I am still waiting on my manager from Good Shepherd to tell me if I still have a job or not there). Anyway, this Centegra job is for a "patient companion". It isn't quite a tech position, but it seems like I'll be doing somewhat the same things (only w/ a minimum of 2 patients). I'm hoping to find out if I get the job at the end of next week or beginning of the following week. If I am hired I'll start August 9th. I think this job will be a blessing to us. It will help out w/ the lingering medical bills. One of our last insurance claims stated that Gracie and I have met our out-of-pocket deductibles (as of a certain date). So we are waiting on those bills to come in, so we can pay them. It's just getting a little tighter than what we wanted, and had planned. Also, if I get this job we are blessed to have my mom and sister who offered to babysit. So that will help us out too. I'm not thrilled to have to leave my baby to go to work, but I am thankful that I am able to get out there and help my husband out. It does make it easier to go to work knowing that I'm leaving Gracie with family. I'm thankful that we live near family. I will be happy to get this job, so Ryan doesn't feel such a hardship to pay the bills that are stacking up.

2010-07-13T06:03:00.000-07:00

TIME IS FLYIN' BY

It doesn't seem possible that my little baby Gracie is six weeks old already! *tears* I would love for her to stay just how she is, and quit growing. Love her to pieces.
I had my six week check up yesterday. It was really odd for me to go in and be out in just about one hour. My "Lutheran General" appointments never went that quickly! They did the usual stuff (I don't think I need to go into any details). And everything seemed to go well. I could really go back to work any time, but the doctor felt more comfortable with me waiting until after Gracie's surgery (August 4th). I need to ease my way back into my normal daily activities (work, exercise, etc.). Not that I haven't already [somewhat ;-P], but I now have the official go ahead to start my "normal" life again (whatever that may be).

**On a side note, I am looking for a part-time job. It's not that I want to, b/c I would love to stay home with my baby. I just need to help out with the bills (medical bills are getting up there, but hopefully slowing down sometime soon). Gracie and I have hit our out-of-pocket expenses according to insurance, but now we are waiting for the actual bills to come in to actually pay the rest of the out-of-pocket (if that makes sense). So if you could pray for a job (and peace of mind for me to do so) that would be great. If you know of anything please let me know. I would love to find something that I could keep Gracie with me, but know that those jobs are scarce. THANKS!

2010-07-02T11:11:00.000-07:00

One Month Birthday

I wrote this the other day, but hadn't posted it yet:

Dear Gracie ~

Happy 1 month birthday yesterday! I can't believe how fast this past month has gone. I feel like so much has happened already. So many doctor's appointments, for one, and thankfully we are in the clear to wait another month before we have to go back. YAY! You have done such a tremendous job showing everyone (especially those doctor's) what a strong little girl you are. You are now a whopping 8lbs 11oz & 20 1/2 inches long. Kathy, the cardiologist nurse, says that's great, and they like to see you growing like that.

You have developed your own unique personality already. Only crying when you're hungry, or if someone you don't know (like those doc's & rn's) bug you to much. You are very laid back like your daddy. You have laughed & giggled! I love it when you hear me or smell me in the room, and seek me out. I love it when you look for me to make sure I'm still there with you. I'm falling in love with you more and more every minute. I love you my baby girl!

2010-07-01T04:16:00.000-07:00

Last Visit Till Pre-Op

We went to our cardiologist appointment yesterday. Everything went well. They did an EKG & an ECHO, and everything looked great. The PDA isn't closed yet. It is very close to being so, but there's a chance that it won't. Which the doc said it was fine if it didn't. She is 8 lbs 11 oz & 20 1/2 inches long. Which is good they say. We don't have to go back until our pre-op appointment on August 1st, and then surgery on the 4th. :-{

2010-06-26T19:41:00.000-07:00

Gracie's First Car Trip

Us as a family! :-)

Gracie made it through her first car ride / trip. We went to Indiana yesterday, and came home this evening. We spent the night last night at Aunt Ju-Ju's house. I must say she was excited to see Gracie again. Gracie also got to see cousin Malia again too. And got a present all the way from Florida (a Minnie Mouse backpack and an outfit). :-) We had a get together with Ryan's family today. His parents (and their spouses), and his brother's with their families were all there to meet Gracie for the first time. Gracie did great through the whole trip. She slept the whole way there, and most of the way home. She got a little antsy about a half hour away from home. The poor girl wanted out of her carseat to stretch out. So she was glad when we got home, and got a bath. Now she's zonked out for the night. I think she's wore out!

The whole family minus Dennis & Trish.

Us w/ Dennis & Trish.

2010-06-20T19:18:00.000-07:00

PHOTO ~ SESSION

I decided to do a little photo session with Gracie.

Here are a few pictures that I took. I have some announcements ordered; now I'm just trying to pick another picture to use for the rest of them. It's so hard, because she's to stinkin' CUTE (if I may say so myself). :-)

2010-06-19T20:43:00.000-07:00

SURGERY

We went to a doctors appointment last Tuesday. It went pretty well. Dr. Neuberger didn't run any tests on Gracie. He listened to Gracie's heart, and checked her oxygen level. Her heart had a murmur, but that's expected w/ her heart problem. And her oxygen level was in normal range at 84% (which is also w/in normal range for having a heart condition). Other than that, he just talked to us to see how she was doing and all. We also set a surgery date of August 4th. It will be an open heart surgery. All I've got to say is that I'm beyond scared for my baby girl! I know she needs the surgery, and it will make her healthy. The doctors do know what they are doing, and have done it many-many times. She is in God's hands ~ I know! However, I can't help but feel anxious and scared....I'll just leave it at that. If I talk much more I'll start to cry and not be able to stop.

2010-06-12T06:04:00.000-07:00

An Extra Doctor's Visit

I took Gracie to see Dr. Thoele (cardiologist) yesterday. She had been turning blue a little more frequent than she had been over the last couple of days. I feel like I had talked to the nurse Kathy a million times just to see if that's normal. Which it is, but it's still a little (o.k. ALOT) on the scary side. The blueness won't go away until she has surgery. Kathy has been great. She had been calling me every morning to see how Gracie was doing. That's really how we ended up in the office yesterday. She suggested I bring her in to get checked out ~ just in case we would have to call over the weekend. The echo showed no difference in change since the one on Tuesday. Which is a good thing. The doctor then assured us that everything is fine, and we just need to keep an eye on her. If anything changes we, of coarse, need to call them. It's just a scary situation until we can fully get to know how Gracie is going to be. I'm just praying that it'll be a short 3-6 months, so we can get the surgery done and over with. I want what's best for Gracie, but I think we're all ready to put this behind us. Prayin hard for my Gorgeous Gracie!

2010-06-09T19:12:00.000-07:00

Lovin' My Baby Girl

Here are a few recent pictures of my Gorgeous Gracie! I had no idea that I could be so in love with her. I know I've said this before, but she is so amazing. I can't get enough of her. We've had a couple of doctor appointments this week. Both went well. We went to Dr. Purdy on Monday. She's back up to 7lbs 2oz (she was 6 lbs 15oz when we left the hospital), and is 18 1/2 inches long. She is a good eater, and she goes back and forth each day of being awake most of the time & others we have to try (really hard) to wake her up even to eat. On Tuesday we went to Dr. Thoele's (pediatric cardiologist) office. They did an EKG & an ultra sound/echo. The echo showed the PDA was more closed then it was on Friday before we left the hospital (which is what he wants it to do). That being said, she has been turning blue in her eyes, mouth, hands, and feet (which is normal for her). Her oxygen level was down to 84%. The doctor is comfortable with that number, because the PDA is suppose to be closed & that will help things flow better. Her O2 will get better once her heart is fixed when she's 3-6 months. We just have to watch her closely to make sure the blueness doesn't last more than 10-15 minutes, and doesn't go all over her body. This sort of stuff is freaking me out, but the doctor seems o.k. with it all. I am trying to trust him. As he's been doing this for 27 + years, and seems to be highly knowledgeable. They have a very good group of doctors there. On the other hand, I don't think that makes the situation any less scary. We will have check ups every week for awhile, and then every 2 weeks until surgery. Praying everything goes as planned.

2010-06-08T13:21:00.000-07:00

GORGEOUS GRACIE

It's hard to believe that Gracie is a week old already. At this time last Tuesday I was beyond the point of wishing she was here already. They had started inducing me at 4 p.m. the afternoon before. And a short 3 1/2 hours later I was at 4 cm dilated. So mom and Alicia came to the hospital at that point (the plan was for them to come Tuesday morning), b/c we all thought if I got to 4 that fast the rest of it would go rather quickly too. Well, when they got there the nurse was told to hold off on the pitocin until 3 or 4 o'clock in the morning. They were going to start it earlier, but the doctor had decided to wait so that all the crew could be there when Gracie was born. O.k., a little frustrating with all the going back & forth, but it was a good decision. We needed as much staff there as possible.
...4 a.m. came and pitocin was started....contractions were getting a little harder, but still somewhat tolerable. Of coarse until they broke my water at 11:15 or so. Let's just say epidurals are a life saver! I originally didn't want one, but didn't think I could handle the full force pain much longer. (I don't deal w/ pain very well).
We did have a few scares along the way. My contractions were coming one right after another, and at one point one of the contractions went up but took a long time to come down. So Gracie's heart rate went down to 90. A lot of nurses and docs came in to try and get it up. They gave me medicine through the IV and threatened a c-section if it didn't come up w/in a few minutes. Luckily, it did.
8 o'clock rolled around, and I was fully dilated. Woohoo! Didn't think I'd ever see that point! I pushed for an hour, and out came my precious baby Gracie. They rushed her over to the corner to check her out, and shortly thereafter to the NICU. I did get to see her long enough to get a picture w/ her. But I couldn't hold her till later on that night. Or should I say in the early morning of Wednesday (mid-night or so ;-)). Gracie was a whopping 7 lbs 2 oz. and 18 inches long. A bit bigger than they had estimated I must say (estimated weight as of the Friday before was 5 lbs 15 oz). Hmmmm???
Gracie stayed in the hospital for 4 days. And absolutely amazed all the nurses and docs. She didn't need oxygen and she ate like a pro. We are very happy that she made it home w/ no surgery this admission. As of today, they are looking at surgery between 3-6 months of age. So hopefully nothing changes, and we can keep it that way! :-)Welcome to the world (as Nana would call you) our "Gorgeous Gracie". Glad you finally made it, and are doing so well! I love you so much!

2010-06-03T05:56:00.000-07:00

Our Lil' Gracie

Gracie Jo

She is doing AMAZING! Will write more about our little girl when we get home (hopefully soon).

2010-05-29T06:17:00.000-07:00

UPDATE ON SEEING OUR LITTLE GRACIE!

We received a phone call around 7:30 last night about our test results. The doctor on-call said that Gracie's lungs are mature enough to be able to be induced on Tuesday. So we will be headed to the hospital on Monday afternoon, and will be induced on Tuesday morning. :-)

2010-05-28T14:19:00.000-07:00

Waiting

I had a doctor's appointment this morning, and to be quite honest I'm not sure if I have a full grip on it yet. They started me out with a non-stress-test ~ Gracie passed with flying colors (shocking I know!). I then went to have an ultra sound. It showed that my fluid was a little low ~ still w/in normal limits (barely) but still low enough to be somewhat concerned (but not totally concerned). So the doctor gave me a choice to either check the fluid again on Tuesday or do an amniocentesis to test Gracie's lung development. I opted for the amnio, b/c last week the fluid was fine. And I didn't want to take the chance of it going even lower before Tuesday. We got the first test results back within an hour or so, and Gracie's lungs are border line. So the doc sent the amnio fluid out for further testing. So again, if the results come back as her lungs are developed enough then they will induce me on Tuesday (6/1). If they are not fully developed then I will be induced on Friday (6/4). Waiting on those results are making me a little antsy. Still waiting on a phone call from the doc.....:-\
Will update when I get the final word ~