Life with the Lupher's

September Update

2011-10-01T23:06:00.000-05:00

September 8, 2011 (9 weeks post surgery) Elle and I headed down to the med center to see her Geneticist, Dr. Lailani. Dr. Lailani is absolutely wonderful and we are so blessed that she is such a caring and involved doctor. The last time Elle saw Dr. Lailani, Dr. L started crying because she was so impressed by all Elle was doing and that was a year ago! We had such a good visit with Dr. L! Elle said her ABCs and counted to 10 and sang "Spoon Full of Sugar" from Mary Poppins. She said her colors and just sat and talked with Dr. Lailani. It always makes me feel so blessed and amazed at how far Elle has come when a doctor vocalizes how impressed she is with Elle. To God to be all glory in this little girl's life!! After our visit with Dr. Lailani, Elle and I headed over to the zoo to eat lunch, see the animals and ride the merry go round. Since her surgery, Elle has had a slight obsession with Mary Poppins so getting to ride the "Mary Poppins merry go round" was a great treat for the little miss!

Friday, September 9, 2011 I took Elle to her first pep rally! Cy-Ranch High School, the high school that our neighborhood goes to and the same school where Elle's Gigi (Lee's aunt Tanya) works was having their homecoming. Elle loved the pep rally and loved watching the girls dance and the band playing. That night, Lee and I took her to her first high school football game. She was decked out in her Cy-Ranch t-shirt thanks to her fabulous Aunt Mel.

Elle and Gigi (tanya)

My old high school band director is the band director for Cy-Ranch and he let Elle help direct the band! She loved it and was telling us "I led the band" for the rest of the night!

Elle and Meme (Lee's grandmother)

Saturday, September 17, 2011 Elle and I met up with Gigi and Vivi and headed to Warrenton to see what type of antiques we could find. The last week in September is the Round Top/Warrenton Antique show and it is massive! Fields and fields of vendors selling anything and everything. They usually start setting up early so we drove out to see if we could find anything good.

While we didn't buy anything, we did find a fabulous park in Carmine, Texas. Who knew that such a little town would have such a great park!

Elle loves her Vivi and her Gigi!

Elle's progress continues to amaze us! Her eating has been wonderful - so good that we have cut down some of her tube feedings. She was getting a tube feed 4x a day every 5 hours but we have cut it down to 3 tube feeds a day. We are back in our full swing of therapies so Elle has physical therapy twice a week, speech therapy once a week and feeding therapy once a week. She is also doing great in her gym class and still has sign language once a week as well. It just continues to boggle my mind that she had open heart surgery just 12 weeks ago! God has a mighty plan for this little one!

Update is coming soon...I promise!

2011-09-21T21:43:00.002-05:00

Well - we finally got out of quarantine and have been blowing and going since. I can honestly say that I haven't sat down to check out blogs or to update ours since the end of July...we've just been so busy. Elle is doing great and I promise a lot of posts that will be back dated so that I can capture everything that we have been up to in the past 2 months!

August Update

2011-09-01T21:24:00.002-05:00

We spent the month of August taking things slow but trying to gain a little bit of normalcy back in our lives...

We took some unused wall space in our kitchen and thanks to our little helper...she now has a magnetic chalkboard to call her own...

Exactly 4 weeks post open heart surgery, we had a nice little play date with two of Elle's favorite little friends....Maddie and Kayla. It was at Kayla's house and SO nice to get out of the house! This was Elle's first time to leave the house since surgery...

Elle and Maddie playing in the kitchen

On Thursday, August 11, 2011 (5 weeks post surgery) we went back to see Dr. Wolfe, Elle's cardiologist. This was her post surgery visit. After he did the echo, Dr. Wolfe walked into our room and gave us the most amazing news. He said that everything looked great but more importantly, we are surgery free! This is the first time since I was 20 weeks pregnant that Elle doesn't have any impending surgeries. While Elle will have to eventually have her pulmonary valve replaced, that date is WAY in the future. According to Dr. Wolfe - it could be in 5 years or maybe 10 years...only time will tell. It was such an awesome visit and then we officially got moved from his "see every month" patient list to the "see every 6 months" patient list which was huge! During this visit we also got the all clear to resume all of Elle's therapies so that was exciting too! Whoo hoo!

No, my loyalties have not wavered...but we sure do have some amazing Aggie friends and when Ms. Jill saw Elle decked out in her UT shirt - she rushed right out and bought her some maroon and white!

Elle relaxing and watching Mickey Mouse...complete with Minnie Mouse shades...she's an accessory girl!

August 24, 2011 we started going to a new gym for a mom and me gym glass. At this gym all the little girls wear leotards so Elle got to choose what color leotard she wanted. The girl in the office pulled out a multitude of brightly colored leotards...purple, pink, red, black...and Elle looked right at the orange one and said "I want orange." I questioned her choice, "are you sure you want orange?" Her reply was a definite "yes." The pictures don't do this leotard justice...it's safety cone orange...safety vest orange..high liter orange. It's pretty bright but Elle seems to love it...and I'm sure her Uncle Benny does too!

August 25, 2011 Elle and I made a day trip over to see our very favorite twin girls (Natalie and Claire) and a chance to see my friends Lala and Amy. We painted with Natalie and Claire and Elle just had a blast! It is so hard for me to believe that we are 7 weeks post surgery and already out and about visiting friends and getting back into our daily life!

When we got home, Elle wanted to wear the turtle she painted as a hat...I'm telling you...she's an accessory girl!

We started back with Physical Therapy on August 23 and resumed our normal 2x a week with Michelle, Elle's PT. After Elle's first open heart surgery when she was 6 months old, she came back to PT a different baby. She started wanting to sit up on her own and was initiating more developmental skills than prior to surgery. It seems like that same situation may be happening again with Elle. Pre surgery, she wanted nothing to do with the horse swing and in only her second session back, she climbed right on the horse and started trying to make it swing. This is huge for her! Not only is it a great test of balance but also core strengthening and getting her knees to bend!

We ended August with a birthday lunch for a very special 1 year old, Elle's cousin, Stella. I use the term cousin loosely because Stella is my cousin's daughter - but whatever - we're family!

We have so much to be thankful for! Elle is just doing great and we are so thrilled with her progress. She is even starting to eat more and more foods by mouth and maybe one day we won't have to depend on the feeding tube! She is growing stronger and stronger every day and never ceases to amaze us! To God be ALL the glory for her amazing recovery and continued growth!

The Tale of a Mirror

2011-07-31T20:43:00.004-05:00

So I'm kind of obsessed with blog stalking some fabulous DIYers. I love to see them take thrift store finds and make them into beautiful pieces of furniture. I saw this post on Centsational Girl and immediately went on the hunt for Rustoleum "Night Tide."

Kate's fantastic piece

Thankfully, some Wal-Marts carry it and after googling it - we finally located a Wal-Mart near us that had it in stock. I just had to have it some place in my home. I'm really wanting to spruce up our master bedroom so I figured that would be the best place to start. I had a mirror sitting on my night stand that Lee had before we got married. It matches all the wood in our house but I'm kind of over the Tommy Bahama matchy matchy look....so....I decided to paint the mirror and see how it turned out...

Here's the mirror before - not too shabby. It's sitting on a 20.00 desk I use as my night stand.

After taping it off and priming

And the end result. I love the blue color and once the desk gets transformed - I think it will be the perfect combination. I'm thinking the desk will look fantastic with the same dark stained top and heirloom white legs and drawers. Hmmmm......

I followed Kate's step by step directions and while it does have a few brush strokes from the poly - you can't really notice them unless you are right up next to it. I dinged it while I was bringing it in from outside so I do have one little touch up to do - but other than that - it didn't turn out too bad. Kind of a fun project!

The Art of Keeping a Toddler Entertained....

2011-07-28T09:01:00.003-05:00

We've been keeping busy around here trying to keep Elle as entertained as possible. Pre surgery, she had therapy every single day of the week, sign language once a week, gym class once a week and multiple play dates throughout the week. We kept ourselves very busy. While this down time in quarantine is nice, we can't wait to start back up with therapy and get to play with all our friends again.

The other night Lee gave Elle a "Larry the lobster tattoo"....

We've done some baking....

We've opened some very special gifts from some very special friends...

And last weekend we had some very special visitors come over to our house for a little bit...Auntie LaLa and Mad Dog (aka Lauren and Madison)

All in all I think we're doing a pretty good job at keeping the little miss entertained....or maybe she is entertaining us!

A Little Marching Band Action

2011-07-21T21:05:00.004-05:00

While I was at Bible study tonight, Lee took Elle to feed the fish at the local community college. Across the street, a band was practicing and this is the video Lee sent me...

Maybe Elle will be in the marching band one day....just like her momma was...hmmmm

And...since this post has a musical theme I feel inclined to include this video as well...Elle didn't want to take a nap the other day...she wanted to sing...

Post Op Appointment

2011-07-19T17:26:00.004-05:00

We had Elle's post op visit today. I am so thankful that Lee was able to go with us! Elle just loves to have her daddy with her during the day! When we got to the hospital, we saw our friend Jordan and his mom. It was so nice to see them! We also ran into our CV nurse, Jennifer. All these doctors and nurses really do become like family!

The first thing they had to do was take Elle's pulse ox and blood pressure. She was sitting on Lee's lap and when the nurse wheeled the blood pressure machine up - Elle pointed to her leg and said "leg please." This little girl knows what she wants! Unfortunately for Elle her blood pressure had to also be taken on her arm but at least she was polite in asking for it to be taken on her leg first! After pulse ox and blood pressure, it was time for x-ray. Elle did great and got to stand up to have her x-ray taken...such a big girl! After that we were moved to a room and met with the nurse practitioner and then one of the cv nurses who took out Elle's stitches. Elle was a rock star and did so well!

Elle got bored and started taking pictures...that's her shot of me

Elle's reward for doing such a fantastic job was a sheet of Dora stickers which she promptly put all over her legs...

While we were waiting for our car, we ran into Guill, one of Elle's ICU nurses. He is just amazing and it was so nice to see him outside of ICU! We are so thankful that Elle's appointment went so well. We are one week closer to being out of quarantine - 2 weeks down - 4 weeks to go!

Bands with a Beat - Benefit for Jordan Merecka!

2011-07-18T11:57:00.002-05:00

We were honored to meet Jordan and his mom while we were staying on the CV Recovery floor. Elle and I watched his tv interview before her surgery so she could see their surgeon, Dr. Morales on tv. It was amazing to watch Jordan do his 4 laps around the unit while someone was pushing "Big Blue" - the machine that is keeping Jordan alive until they find him a heart. Please click here or on the picture below to get more information on Bands with a Beat - a community fundraiser for Jordan and his family! You can also follow Jordan's Caringbridge page here.

Paging Doctor Eleanor on Animal Print Friday

2011-07-18T09:42:00.005-05:00

We've been trying to keep Elle as low key as possible - but that is pretty hard to do with a two year old! Friday Elle found her doctor's kit that one of the volunteers gave her in the hospital. She spent a good part of the afternoon listening to my mom's heart to be sure she was ok. She knows exactly what to do with the tools in her little doctor's kit! She listened to our hearts and then our lungs with the stethoscope, she took our temperature with the thermometer and then yesterday afternoon, she lifted up Lee's shirt to give him medicine in his belly button with the syringe. Elle gets all her medicine through the g-button on her stomach so she just assumed that's how everyone gets their medicine!

Elle in her chicken shirt being a good little doctor

She spread out her blanket on her chair before she put down Minnie and Mickey to listen to their hearts

I'm just amazed everyday at the progress she is making. She's back to all her old antics and except for not wanting us to see her chest/belly she is almost 100%. That's the one thing we have noticed and we noticed it in the hospital. She doesn't want anyone to look at her chest - she is super modest now (which is probably a good thing!). I think she is just afraid that whatever we are going to do to her will hurt her. I'm afraid for tomorrow when she gets her stitches taken out!

Elle in one of her Aunt Mel original t-shirts!

It's funny how things happen. I was super worried about Elle not being able to wear her feeding tube backpack for 12 weeks. She's really not eating anything orally now except for maybe an ounce or two of soup several times a day. The Lord works in mysterious ways because this (what I thought would be a hindrance) has turned into a blessing. It is forcing Elle and I to go on an hour long walk every morning during her first feed of the day. It's so nice to walk with our friend Tina and when Tina can't go with us, it is amazing quiet time for me. I find myself in prayer for a majority of our hour long walks. It is such a blessing and wonderful way to get our day started!

Please pray for us tomorrow as we take Elle in for her post op visit. They will be taking out the stitches from her chest and where the chest tube was. We're praying for a smooth and quick visit!

Home Sweet Home

2011-07-14T22:30:00.005-05:00

Well - we finally made it out of the hospital around 4:30 on Tuesday afternoon. We were all packed up and waiting on our nurse to remove Elle's final iv for what seemed like hours...well...that and we were also waiting on Miss Priss to wake up! My mom and Laura spent the morning and afternoon with us. It was so nice to have such fun company! My mom and Elle painted in the play room on our floor while Laura and I went down to the food court to grab some lunch. Elle loved having Eldy and Nana there with her for a majority of the day!

Laura and Me and Laura saying goodbye to Elle Belle

Elle's room - you couldn't miss it! Lee packing up the stroller while Elle slept through all the ruckus of us trying to pack

The patient when she finally awoke waiting on the nurse to come pull that final iv...please disregard the massive bed head - at this point her brush had been packed and was already in the car!

waiting on the elevator to take us to our car! whoo hoo!

We got home around 6:00pm and that evening was such a blur! I remember running across our street to give my sweet friend Ali a huge hug and I remember telling Lee the cooler was still in my car as I was drifting off to sleep. We all fell asleep super early Tuesday night - every light in the house on and I think I even left one of my car doors open. Oh well - at least we made it home! Wednesday morning, Elle woke up bright and early and was rearing and ready to go! Only bad part about having a toddler at home 5 days post open heart surgery is trying to keep them on the down low! Our cable/Internet was out so we watched Madagascar and Madagascar 2 at least 6x - one was going in our room and the other on the tv in the den. We read a lot of books and colored and other than a few minor melt downs - Elle did really good. We have to be super careful about Elle's incision right now. We can't lift her up under her arms - we have to scoop her up, she can't climb anything, throw balls, or fall. She also can't wear her feeding tube backpack for 12 weeks. This is going to be the hardest because she isn't eating anything orally and hates to be strapped to her highchair during feeds. We are going to have to get creative with this! My brother stopped by and played with Elle for a few hours - she loves her Uncle Benny so much and we are all so proud of him for taking the plunge and starting graduate school at The University of Texas. He's already moved to Austin so his visits are extra special. I guess this means we will be adding burnt orange and white to Elle's wardrobe! This morning, Elle and I took a walk with our friend Tina to pass the hour (plus) that Elle's feed was going. It worked out well with Elle being in the stroller and we went early enough that she wasn't too hot. We were walking nearly everyday pre surgery so I got super excited when the CV nurse told us that we could continue with our normal early morning walks. We have had so much help from our wonderful family and friends. From my mom helping with Elle while I try to unpack all our stuff from the hospital to Ali going grocery shopping for us to sweet friends making dinner for us - it is all just so overwhelming. We are so thankful to have such amazing friends and family! Thank you to everyone who has helped us! Each passing day, Elle is getting stronger and walking around more and getting a little steadier on her feet. Our main concern right now is her falling and busting her chest open - that would be awful. So for now, we are just trying to keep her occupied with books, coloring, painting, movies and mickey mouse. Lee and I watched her this evening prepare a feast in her play kitchen for the gaggle of toys she now carries around with her everywhere...mickey, minnie, donald and daisy duck, pluto and a pink baby doll a volunteer gave her in the hospital. They are all in bed with her right now as I type this! It's crazy for me to think that at this point a week ago - we were sitting by Elle's bed side post surgery. This recovery has been so different and so much faster than the last surgery! Thank you Lord for the amazing gift of our precious daughter and the miracle I see every day as she gets stronger!

We're Heading Home!

2011-07-12T14:20:00.002-05:00

Praise the Lord we are heading home! I just signed the official going home paperwork so as soon as Elle wakes up - we are out of here! Her surgery was on 07-07-11 at 7:00am and it was her 7th surgery. The locker we had on the ICU floor was locker #7. We KNOW God has been with us through this whole ordeal and we know he will continue to watch over and protect and heal Elle!

Very Special Visitors (that made our day better!)

2011-07-11T22:09:00.007-05:00

This morning was extremely difficult. It just started out bad! Poor Elle didn't sleep great Sunday night which meant I didn't sleep that well either. She woke up around 6:20am - just early enough to say goodbye to Lee as he headed to work. Thank goodness we have a coffee maker in our room because that first cup of coffee sure was needed after only about 3 hours of sleep! Right after Lee left for work, Elle had to have some blood drawn. Since they have removed all her lines, they have to stick her little fingers to get the blood. It's just awful! The technician drew 2 vials of blood and poor Elle was screaming the entire time. Right after the tech left, our nurse came in and told us that one of the CV nurses was on her way to come and pull the pacing wires that were still in Elle. The pacing wires are two little wires that were situated against Elle's heart and then they extended outside her body. Just in case her heart stopped, the pacing wires could be attached to a little defibrillator to re start her heart. So...around 8:00am, the nurse came down and pulled out Elle's pacing wires. This is done with no drugs because the doctors and nurses need to be able to see how Elle's heart responds to the wires being pulled. Of course Elle is was crying and to make matters worse, after the wires were pulled, Elle's blood pressure had to be taken every 15 minutes for an hour. The cuff was attached to the portable machine and it would just start automatically and scare Elle. Ugh! Poor little girl! Around 8:30am, Elle's respiratory therapist came in to do a treatment to help her breathe a little better and (thankfully) she responded well to the treatment. Close to 9:00am (and right after Elle's final blood pressure was taken), the technician that had done the earlier blood draw came in and said that she needed to draw another vial of blood. Ugh! Poor Elle just couldn't catch a break and it was only 9:00am! Dr. Morales came by to check on Elle. He asked if she was going to have an echo today and I told him no - it was scheduled for Tuesday. He got this puzzled look on his face and after checking out her scar, he left. Not two minutes later our nurse came in and said that Elle's echo had been rescheduled to 9:30am. Oh the powers of the surgeons! As I was putting Elle's shoes on her to go for the echo, our nurse noticed that one of Elle's iv's that was in her foot had come almost all the way out. She needed to completely pull it out before we went for the echo - and after some more screaming from Elle and lots of blood we were heading upstairs for the echo. Elle still wasn't completely calmed down from all the activities of the morning so it wasn't surprising that she screamed for the entire 30 minute echo. She has never screamed during an echo - usually she just sits there and watches whatever movie is on and holds the wand as the technician moves it over her chest. Not today! By 11:00am we were back in our room and I asked the nurse if anything else was scheduled for the day because poor Elle needed a break. Thankfully, she said no and we could rest. Elle went right to sleep and slept for a solid 2 hours. Praise the Lord! When Elle woke up from her nap, we had two very special visitors. My bestie from college, Laura, and her husband, Matt....aka Aunt Eldy and Uncle Matt. Matt is taking a big medical test here in Houston tomorrow so it worked out well that they could come in town all the way from Mississippi to visit Elle Belle. Elle loved all the attention. She took Aunt Eldy and Uncle Matt on a walk all the way around the unit - not once but twice....and she lured them in to reading her books. She was patting beside her in the bed saying "Eldy sit." Laura and Matt's visit was exactly what we needed to cheer us up after the eventful morning! I am so thankful for such amazing friends!

Matt and Laura left around 4:15pm and as they were leaving, Elle and I were being escorted down for Elle to have an x-ray. She did great during the x-ray and we were back in our room (our "home" as Elle calls it) with an hour. Tonight my Aunt V and Uncle Jim drove in from College Station with their daughters Emily and Sarah. Elle was so excited to see them and she entertained them for quite a while. We even took them on a walk around the unit - Elle's goal is to walk around the unit 4 times and with the help of all our visitors, Elle did it!

I am doing a Bible Study over the book "Respectable Sins" by Jerry Bridges. The events of the morning made me reflect back over the book so much. As I was trying to calm Elle down after the echo, I kept praying that God would give Elle peace and that I would calm down as well. In the book, the author states, "Psalm 139:16...But the same truth that God has ordained all our days, with all their ups and downs, their blessings and disappointments, can help us deal with the circumstances that tempt us to be discontent. Your circumstances, and however difficult they may be, the truth is that they are ordained by God for you as part of His overall plan for your life. God does nothing , or allows nothing without a purpose. And His purposes, however mysterious and inscrutable they may be to us, are always for His glory and our ultimate good."

Amen! God brought about our hard morning so that we could truly be thankful for the events of the afternoon - wonderful visitors and a wonderful Healing Father!

Elle's First Trip Around the Floor

2011-07-11T06:14:00.001-05:00

Elle had a great day on Sunday. After morning rounds, we decided to take Elle on a walk to see the fish on the other side of the unit. It's kind of fun to watch all the kids and parents out doing laps on the 15th floor. Some parents are pushing their kids IV poles while their kids are walking - some parents are pulling their kids in wagons and in the case of a very special young man, his dad is pushing a giant 300lb machine that is keeping his son alive while his amazing son does laps with an entourage of nurses and friends. We were exctied to get Elle out and in all the action! The floor is a giant rectangle with rooms around the outside and then nurses stations, office and elevators on the inside. Our goal was for her to walk the entire lap around the floor. Now, Elle's not the best walker to begin with so we weren't too sure how this was going to go....but she did great!

We made it to the fish tank on the other side of the unit - but Elle wasn't interested in the fish...she wanted to drive the red fire truck!

It took us almost a full hour to get around the entire floor with Elle scooting along in the fire truck. She was waving to everyone who passed her. It was so good to see her little personality coming back out!

After our trip around the unit, we came back to our room hoping that Elle would take a nap. She had a horrible night on Saturday night and (truthfully) both Lee and I were looking forward to naps! Well - Elle thought otherwise and decided to stay awake. Oh well - at least we had some visitors come up and keep us company for a bit...

Elle got spoiled rotten by Meme and Granddaddy. Her favorite gift was the minivan that plays music...too cool! And thank you mom and dad for washing our clothes!!

After all our guests left, we were FOR CERTAIN Elle would nap....nope. Thankfully, we have plenty of movies/books and games to keep her occupied so we watched Madagascar and some of the golf tournament before we decided it was time to go on another walk. This time, Elle wanted to drive the black police car. It has a little siren that makes noise and she was loving it!

Such a busy full day for such a little girl! Aunt Mel and Uncle Austan brought us up dinner and by 6:30pm - Elle was ready to call it a night. So was I and I must have drited off to sleep becasue the next thing I knew it was 10:00pm and Elle was up with a nasty drainge induced cough and runny nose. Poor baby. Once she settled down after a pretty narly coughing fit, Lee went to bed and I stayed up with our little night owl. I'm pretty sure we watched Madagascar again and I know for sure we watched Tangled around 1:00am. She just didn't/couldn't go back to sleep. I was about to go for another walk with her when she finally closed those little eyes and fell asleep. I think she finally fell asleep around 2:30am. She has a very busy Monday so I'm just praying that we can make it through the day and manage to get a few naps in! We are so excited to see Elle's progress and excited to see what happens in the next few days. We might be getting sent home! Our continuous pray is thanking God for what he has done in our lives and in Elle's little life and that during her recovery and progress we give HIM glory first!

Eventful Night and Elle's First Steps

2011-07-10T09:51:00.002-05:00

We had a very eventful night last night. They started Elle's feeds yesterday through her feeding tube. She ate very well orally yesterday but just didn't eat quite enough to not depend on the feeding tube. She received her last feed at 1:30am and I think it was just too much food for her little stomach because she woke up with a little cough and then before we knew it she was throwing up. It wasn't too bad but I think her little tummy was just so full that the excess had to come out. After throwing up and getting her teeth brushed and jammies changed - she fell right back asleep...only to be woken back up to have her blood pressure taken and a chest x-ray around 4:00am. Poor little baby! She wasn't allowed to have anything to eat or drink after 4:00am because at some point today they will be pulling our Elle's chest tube. When we woke up this morning, Lee wanted to see if Elle could walk. This was her first time to stand up since surgery and she did very well!

Lee supporting Elle as she took her first few steps

We have a wonderful PCA 9Patient Care Assistant) who set up a washing station for us this morning so we could give Elle a bath. She was pretty crusty from all the tape and stuff she has all over her little body. She can't have real baths for a while because of her chest incision (and also because of the chest tube she has coming out of her chest). Elle wasn't' a fan of this type of bath or of the oily stuff we had to use to take off all the tape - but we got her all washed up and dressed for the day.

Elle waiting for her "bath" to begin

The doctors rounded early this morning and the plan is to take the chest tube out today and then take the pacing wires that are hooked up to Elle's heart out tomorrow.

Elle is watching the doctors right outside our door. She loves being able to open the blinds that are right at her level

She has figured out how to raise and lower her bed - this could get us in some trouble!

We are looking forward to letting Elle walk over to the playroom today to go and see the fish and maybe play with some of the toys the playroom on 15 has to offer!

New Room!

2011-07-09T22:15:00.000-05:00

When Lee made it to Elle's room this morning, she told us she wanted to color and she initiated sitting up on her own. This was huge progress!

We had a wonderful nurse and had a wonderful morning in the CVICU. Elle had a little more energy than she did yesterday - yea for progress!

At 11:30am - news came that we were being moved to the 15th floor which is the CV recovery floor. Whoo hoo! Around noon we were on the move - Elle slept through the entire move and woke up in her new room on the 15th floor - complete with a few of the entire med center.

I love her little pony tail sticking up from the covers!

We had quite a few visitors yesterday which was nice. It's so nice to be in a private room now - one where we can have visitors. Elle is slowly but surely getting back to her normal sweet little self. She asked to watch the animal movie last night (Madagascar) and overall we had a wonderful evening.

Elle and Lee playing in her big girl bed

The only bad thing about staying on the 15th floor is that the nurses come in constantly throughout the night. No one is going to get very much sleep until we get home! But...being on 15 is one step closer to be being home! We are so thankful for Elle's progress!

Early Morning Wake Up Call

2011-07-09T06:41:00.003-05:00

Lee and I were blessed to get a room last night at the Ronald McDonald House. There were a lot of surgeries yesterday so we weren't' sure we were going to get a room. In fact, we were # 3 on the waiting list. A little after 11:00pm, the charge nurse told us they had an empty room if we wanted it so we gladly accepted. The charge nurse also happens to be one of our old favorite nurses from Elle's days in the NICU. While she was never Elle's nurse, she took care of the baby next to Elle so we spent many many nights talking with her. When Elle had her 1st open heart surgery, Elizabeth had moved to the CVICU and to working days so she had Elle for a few days during our last stay here. It was so nice to catch up with her last night! She noticed that Elle was having a pretty hard time sitting up last night so she ordered a "big girl bed." It can be lowered and the head can be raised more. Elle does look so small in this bed though! We left Elle sleeping sounding last night and told her nurse, Janie, to call when she woke up. I got the call at 3:30 this morning that Elle was awake and wasn't happy. I left Lee to get a few more hours of sleep and headed up here to Elle's room to find a not happy little girl. She told me she wanted the duck book. After a few reading of Little Quack and Curious George, there were signs of the pre surgery Elle. She was talking more (the raspiness of her voice from being intubated has slowly started to subside) and told me she wanted to be rocked. She still has a chest tube in so it has been difficult to hold her with all the other wires and the chest tube. Her asking to be rocked was the straw that broke the camels back and with the nurses help, I was able scoop Elle up and rock her back to sleep in the rocking chair. It was just so special to be able to hold her again!! Before scooping her up, Elle noticed my necklace and said "momma's necklace" and then pointed to my earrings and said "momma's earrings" and then my rings "momma's rings." Then she asked where my feathers were. I have 3 small feathers in my hair that Elle just loves so she got pretty excited when she saw them in my hair. It's the little things that make my day!! She went back to sleep around 6:00am and has been resting comfortably. Today is the day that the Lord has made - I will rejoice and be glad in it!

View from Elle's room as the day begins

Friday Night Fun

2011-07-08T23:50:00.000-05:00

Elle had a really great day during the day. While she still slept a lot, every time she woke up she got a little happier and was asking for more of her favorite things. She woke up for a while in the early afternoon and asked for two blue gloves, her duck book (Little Quack) and her pig movie (Charlotte's Web). The funny part was that she wanted them both at the same time - so we had Charlotte's Web going on the computer on a little table right in front of her and then Lee and I were taking turns reading "the duck book" all while Elle was wearing her two blue gloves.

She got a little frustrated trying to put on the gloves - her pulse ox is on her pointer finger on her right hand so we had to help her get that glove on. It was so nice to hear her say "help please" though!

She did great at drinking lots of cold water throughout the day. Around 3:00pm, my parents came and relieved Lee and myself so we could go eat lunch and take a nap in the waiting room. Thank goodness for the relief! Lee and I ate lunch at the RoHo and then took a little nap while my parents sat with Elle. She woke up for a while when they were with her and was able to eat some green jello! This is huge for Elle! Our goal is to allow her to eat orally first and rely on the feeding tube as secondary. She is still on an all clear liquid diet so the fact that she actually did eat some jello just amazes me! They let her eat the jello only because she had to get a dose of lasiks to help her go to the bathroom. She is retaining fluid so right now we are praying for pee and for her kidney function to get back on a normal schedule. She keeps grabbing her diaper so I know she is in pain when she goes to the bathroom. They told us to give it a day or two for the pain to subside from the catheter. Lee and I got back to Elle's bedside around 6:00pm and she was wide awake. She actually stayed awake until 11:00pm - 5 hours awake is a record so far! During that time she did go potty so that was an answered prayer (but we're still praying for more!). Mark and Vickie brought us dinner and were able to spend some time with Elle. Elle is so lucky to have such amazing family members that love her so much!! We are so blessed to have such amazing parents! We're praying for Elle's continued improvement. This is just such an amazing journey to be on and we are so strengthened by the love of our Lord Jesus Christ!

Animal Print Friday - Hospital Edition

2011-07-08T12:10:00.004-05:00

Elle has had quite the eventful morning. Lee came to relieve me at 3:30am but Elle was sleeping so peacefully (thanks to the Ativan) that we decided to both go back to the room in the Ronald McDonald House so we could both get a few hours of sleep. Lee got back up to Elle's beside around 6:30am and shortly after that, Elle woke up. She got to drink some cold water which was a big relief to her. Lee was with Elle during rounds this morning and the decision was made to pull Elle's catheter, her arterial line which was in her right wrist and her central line which was in her neck. All these lines being pulled mean our little lady is on the way to recovery! I made it back to Elle's beside around 9:30am - just in time to be with her as her catheter and arterial lines were pulled. Pulling the arterial line means that Elle's right arm is no longer strapped down so she has complete use of both arms now! A little while later they pulled the central line in her neck. She has been sleeping since around 10:30am which I am so thankful for! She was up and in so much pain for a majority of last night.

Here is Elle with her pink leopard print blanket - that's about as much animal print as we are allowed today!

My view of Lee and Elle as I type

We had some special visitors today - one of our favorite nurses from CVICU came by to chit chat and also, my 2nd cousin (who also works in CVICU) came by before going to a class. We are so blessed to have met some amazing people in all our stays here at TCH!! God is doing his amazing work through Elle. This recovery is so much faster than the last open heart surgery. There is even talk of her sitting up in a chair today! I am just amazed at the healing power of our God! Praise the Lord for ALL of these major milestones Elle is hitting. HE is doing all the work!!

In Recovery

2011-07-08T00:36:00.002-05:00

At 3:30pm Lee and I were finally able to see Elle. We walked into her recovery room and the first thing that struck me was how big she was! She's on a big girl bed and all stretched out she just looked so BIG! Her incision looks fantastic and despite all the tubes coming out of her, she really does look amazing. The nurse that had her from coming out of the operating room until 11:00pm tonight was a truly amazing man. He has had Elle after her last two heart surgeries and it was so nice to see a familiar face when we walked into her room. One of our favorite anesthesiologist even stopped by to say hello.

Almost as soon as we walked into her room, Elle started moving her toes around and sucking on her breathing tube like it was her binky. At 3:50 pm she opened her eyes for the first time. This was truly amazing - heart breaking because she was in so much pain - but amazing none the less. After her last open heart surgery - it was 4 days before they pulled her out of sedation and then another day before they pulled the breathing tube. Today - Guill, her nurse, told us they were going to try to pull the vent before he left at 11:00pm. CRAZY! Lee's parents and grandparents and my parents all got to see Elle this afternoon. I felt so bad for her whenever she would wake up because her little hands were tied to her bed but she would just try to point as best she could at the breathing tube and start crying. Oh my heart hurts for her! Lee and I can't bear to leave Elle alone so my parents brought us dinner and sat with Elle until we were finished eating. She was having quite a bit of difficulty in breathing at a few points in the evening. Drainage has settled in her chest and it hurts her too much to cough so they were having to suction out her throat. Not Elle's favorite thing in the world to do. Finally around 9:30pm, Elle's blood gas came back well enough for them to pull the ventilator.

I was napping in the waiting room when I got the call from Lee that she was asking for momma. Poor little girl! Her raspy little voice keeps asking for cold water and orange juice - neither one of which she can have. She had to wait 4 hours post pulling the vent before she could have anything. Around 11:00pm - Lee left to sleep at the Ronald McDonald House (thank you Lord for such an amazing place!) and I stayed with Elle (he will be coming back in a few hours to relieve me so I can go sleep for a bit). Our wonderful nurse for the evening brought us some ice chips to see if that would help appease Elle and thankfully it has! Poor little lady can only get about 5 ice chips every 15 minutes but it is better than nothing! Finally at 12:30 - Elle's blood gas came back awesome and Dr. Lam - the Cardiac Fellow ordered that Elle can now have 30cc of water every hour. I have never seen a child drink water as fast as I did when Elle saw that little cup. We are so thankful for little steps - big coughs and small cups of water!...and we know that God is in charge of every single step Elle is taking. He has known about this path since before the Earth was created and I take so much comfort in knowing that HE is with her right now as she sleeps and HE knows the full extent of her and her little life!

Update from the Operating Room # 4 - Straight from the Surgeons mouth

2011-07-07T13:13:00.005-05:00

We just met with Dr. Morales. When Dr. Morales did Elle's first repair, her RVOT (right ventricle outflow tract) was bordering on pulmonary atresia (a complete closure). He did his best to widen it but because it was restricted he wasn't able to widen it as much as he wanted. Over the last two years, the muscle has thicked around the incision and that has caused her blood flow to be restricted. This time, he was able to go in and widen it to a width he felt comfortable with (18 mm to be exact). He thinks that this repair should last Elle a very long time (years if not a decade)! He didn't have to mess with her pulmonary valve which is a good thing. All in all - he said she did great and he was pleased with how wide he was able to make her vein. Praise the Lord for HIS amazing work!

Update from the Operating Room # 3

2011-07-07T12:34:00.003-05:00

Praise the LORD! Elle is doing great and Dr. Morales is almost finished with the surgery. He did not have to replace her pulmonary valve which is an answer to many many prayers! While she eventually will have to have it replaced - at least now she can grow more before that next step. I cried when the nurse told us he was almost finished. Tears of joy!! She still needs to come off of the heart-lung machine but we should be able to see her within the next few hours. Thank you Lord for our many blessings! Elle's progress today is ONLY because of YOU and your work through Dr. Morales and our little patient!

Update from the Operating Room - #2

2011-07-07T10:47:00.002-05:00

Elle is doing good. Her blood pressure is stable and as Dr. M's nurse said "she is doing great at her part of the surgery." Dr. Morales has been working his way through her scar tissue. Since this is her second open heart surgery, he is having to be very very careful as he cuts through it. Scar tissue bleeds easier. His nurse said that he may be 30 to 45 minutes away from putting her on the heart-lung machine to actually begin the repair. Praying for guidance for Dr. Morales and his team and for Elle's recovery!

Update from the Operating Room # 1

2011-07-07T08:58:00.002-05:00

We just heard from the operating room that Elle is doing good. She went to sleep no problem. They were able to do the transesophageal echocardiogram without an issue and all her lines are now in. The next step is for Dr. Morales to begin his part. We are praying for Dr. Morales and his team and that God's presence is felt in the operating room. We are praying for strength and peace for Dr. M and his team and for us as we wait. "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving present your request to God." Philippians 4:6

Today is the Day - Surgery Update # 1

2011-07-07T07:30:00.002-05:00

Today is the day we have waited for since September of 2010. Our morning began bright and early and by 6:00am we were already at the hospital with a very sleepy but happy little girl.

By 6:20 we were back in the pre op holding area. Elle did great getting her pulse ox and blood pressure taken. So good, in fact, that she got to play with two blue gloves while we waited for the anesthesiologist and surgical teams. Elle is such a super trooper! She said "good morning" to every nurse and doctor that stopped by her bed and had a smile for each of them.

Right before 7:00am, Elle was given some medicine to make her sleepy and by 7:10, we were saying our goodbyes to our precious little angel. The anesthesiologist picked Elle up and she fell asleep on his shoulder as they were walking through the big double doors and into the operating room. It will probably be a few hours before we receive any news from the operating room.

Our continuous prayer is that God's name be glorified in all that we do and in all that Dr. Morales and his surgical team do. We pray for the Lord to watch over Elle and her doctors and nurses before, during and after surgery and for God's amazing power and strength to be felt in the operating room and in the waiting room while we wait for updates. "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

A day at the hospital - Pre Op

2011-07-06T22:00:00.000-05:00

July 6 we began our day with an 8:00am appointment for Elle's pre op. Truthfully, I was a little nervous about this appointment because it meant Elle was going to have both her blood pressure taken and blood drawn. Elle's isn't a fan of the blood pressure cuff and she's never had blood drawn before (at least not while she has been awake). She was a super trooper for the whole day and surprised us all in how well she did.

She did so well that she got to play with TWO blue gloves.

We had a lot of fun in our little exam room. Elle had so much fun coloring and playing with the gloves and reading all her new books. One of the nurses even told us that she couldn't wait to get to our room because it sounded like we were having so much fun! Ha!!

The wonderful nurses gave Elle a whole bunch of stickers for being such a good patient.

While we did have a lot of fun in our little exam room, we sure were happy when we were sent home after 6 hours of exams and testing. Elle fell asleep on the car ride home but when she finally did wake up - Lee and I decided to have an evening of all of Elle's favorite things. After dinner we went and fed the fish and turtles at a little pond by our house, then we headed over to Vivi and Big Daddy's house for Elle to see Big Daddy's salt water aquarium and eat some ice cream. After that we went to the high school and Elle got to drive around the parking lot for a bit before heading home for a bath and some books before bed time. Surgery is scheduled for tomorrow at 7:00am. It's going to be a long day but Lee and I have complete faith in our Lord Jesus Christ that our little angel will be protected. She is in God's hands!

Father's Day Weekend

2011-06-23T08:39:00.000-05:00

Father's Day weekend we had a very BUSY weekend. Saturday, June 18 we spent the morning and afternoon driving Elle between birthday parties. We spent the morning at our friend Blakely's 5th birthday party and then we headed to our friend Kyleigh's 1st birthday party. Kyleigh's birthday party was half way to Matagorda so we left her party and went to meet my parents at their house on the river.

Elle enjoying some birthday cake at Kyleigh's birthday party

A little bedtime reading with Granna and Grampy

Sunday, June 19 we woke up early so the boys could open their father's day presents and then we headed out on the boat. Elle LOVES to drive my dad's boat - and on this trip she discovered the emergency whistle.

Elle loves her Grampy!

We left Maratgorda on Sunday afternoon and made our way back to Houston. That night we went over to Uncle Jake's house to celebrate father's day with Big Daddy.

The hi-lite of Elle's night was when Uncle Jake started playing his guitar. She loved it and Uncle Jake even let her use the pick to learn how to play!

Delirium

2011-06-22T19:15:00.003-05:00

This is what Elle gets like when she only naps for an hour and didn't sleep well the night before...

Animal Print Friday - Ode to Aunt Mel and Auntie Shay

2011-06-18T08:51:00.003-05:00

I have a slight obsession with Elle's clothes. Obsession might be too strong of a word but I do love to find her super cute clothes...and most of the time they are super cheap too. I haven't stopped thinking about this one certain outfit from Carter's since I first saw it around Easter time. My mom and I finally made time to go to the Carter's store and sure enough - the super cute outfit was on sale...they just didn't have Elle's size. So - being slightly obsessive - we loaded Elle up and drove to another Carter's store. Thankfully, they had Elle's size!

Ode to Aunt Mel and Auntie Shay - her new wiener dog outfit!

I had to get Elle a 3t shirt because all her 2t shirts are just too short. Yesterday afternoon, her dietician came over for our monthly visit and I was super shocked when after she weighed and measured Elle she told me Elle grew an inch in a month. No wonder her 2t shirts are just too short!

Yesterday morning I walked into the kitchen to find this taped to the coffeemaker...

Lee surprised me with a date last night to Vic and Anthony's. Yummy yummy yummy! We've been on Weight Watchers since February 1 and haven't had any dinners consisting of steak and creamed spinach and creme brule. It was so good and such a special treat for me. I loved spending a few hours alone with my hubby! When we got home, Elle still wasn't asleep but she was having such a good time playing with ViVi and Big Daddy that we just let her stay up. She even told us she wanted to eat and Vickie fed her some soup. Elle's eating has really taken off lately - she is eating more by mouth now than she ever has. We're praying we are on the road to no more feeding tube! Wouldn't that just be awesome if by Elle's 3rd birthday she actually could eat her birthday cake?! That's my prayer!!!

Painting With a Twist - Toddler Style

2011-06-15T22:45:00.003-05:00

Yesterday morning Elle hosted a painting party at our house for two of her little friends and their mommies. The girls had a great time painting a little something special for their daddies and then they REALLY had a good time running around our house in only their diapers. They were just too cute for words! After painting and nap time, it was time for Elle to go to physical therapy. On our way home she told me she wanted to paint some more...so we came home and our little artist went to town!

and...just in case you were wondering where her hearing aids were clipped to during her painting session....

that's right....her pony tail!

Not too sure what we are going to do with her masterpieces yet but I'm sure we will find a place to proudly display her artwork!

Animal Print Friday - Then and Now

2011-06-13T08:27:00.005-05:00

Friday, June 10 Elle had on one of my very favorite outfits...her chicken outfit! I just love the color combination and the fact that it has chicken and eggs all over it just makes me smile. It's an outfit that has been in her closet for a while so after a little searching I found what I was looking for...then pictures....

Elle on August 26, 2010 in South Padre. She wasn't even walking yet - and had only been crawling and cruising for around 3 months. She was around 17 months old.

And here she was on Friday....disregard her bed head....she had just woken up from a nap when we swooped her up to take her to the pet store.

What a difference 10 months makes! She still isn't the best walker but she is definitely improving! There was a time not too long ago that she couldn't walk through the store without falling and now she is walking all over the place and trying to help Lee pull the dog food off the shelves. She is our little miracle (and I'm so glad the chicken outfit still fits)!

Video from Lee

2011-06-11T23:14:00.002-05:00

Lee sent this video to me today while I was out running errands. It's the type of video that makes me rush home to hear all about her adventures!

At the end when she holds up her pointer finger she says "one more time"...just a little elle translation!

In her daddy's shoes

2011-06-10T08:18:00.000-05:00

Daddy's First Adventure to the Zoo

2011-06-06T19:13:00.013-05:00

Saturday June 4 I had big plans to wake up early and get to the zoo by 8:00am so we could spend the morning and eat breakfast with the lions. Of all the days that Elle decided to sleep until 8:15 - she picked the one day where we needed to be out the door by 7:30am! Oh well - while we didn't get to spend the morning with the lions - we still made it to the zoo. Elle was so excited to show Lee all her favorite animals. Lee hadn't been to the zoo in probably 20 years so he was loving every minute of it! This was Lee's first time at the zoo with Elle and I'm not sure who had more fun...Lee being lead around by Elle or Elle getting to play tour guide to her daddy!

Elle's favorite animals are the birds. She wanted to go there first (after we made a brief stop by the sea lions). I love the first picture because when Elle hears something for the first time, she usually points to her hearing aids and then will sign or say whatever she hears. She obviously heard those birds talking!

Telling the Eland to "come here come here" - the funny part was that the big Eland that you can kind of see in the background did start to walk up to the fence when Elle was telling it to "come here come here."

In all the times that Elle and I go to the zoo, we have never once ridden the carousel. I always ask and Elle always tells me no - so we move on. Lee wouldn't hear of not riding the carousel so we bought our tickets and slowly made our way around to pick out which animal Elle was going to ride. She was not a happy camper - so Lee decided to let her sit on a very unassuming log with a snake wrapped around it as her first carousel ride. The other animals were just too much for our little one. She was telling Lee "up please up please up please" for the first few minutes of the ride but once the ride stopped - her reply was "again! more! again please!" She told us she wanted to ride the turtle - so we bought more tickets and this time - Elle thoroughly enjoyed the entire ride!

The pictures don't do her excitement justice - she really was loving riding on the turtle

saying hi to the elephants

Lee and his tour guide

I just love this picture - lee had his leg propped up on the edge while they were looking at an iguana. of course elle had to mimic her daddy....too funny!

I just love the zoo and hope we can get back a few more times before Elle's next surgery. We see something new and exciting every time we go. I am so glad that Lee was able to be with us and share in Elle's excitement and amazement at the animals! Now he knows why the hour long trek down there during rush hour during the week days is totally worth it!

Memorial Weekend Fun - Part II

2011-06-01T23:22:00.000-05:00

Monday, May 30 we went to Pump It Up with our Moms and Tots group. It was so much fun to have all the dad's there! It was also so funny to sit back and watch the dads climb all over all these blow up moonwalks and slides. The last time I went to Pump It Up with Elle, I left sweating and my arms felt like noodles after carrying her up the 2 story slide - multiple times. This time I got to sit back and watch as she and Lee had so much fun together.

We loved meeting up with our friends the Ilsevers and the McCowns. You could just tell how much all our little ladies love their daddies!

Memorial Weekend Fun - Part I

2011-06-01T22:12:00.000-05:00

Saturday, May 28 we loaded up Mark and Vickie's car and headed to San Antonio for a quick weekend trip to Sea World. Elle had no idea what was in store for her (and neither did any of us!) Lee, Elle, Mark, Vickie, Uncle Jake and myself pulled in to the parking lot around 11:00am on Saturday....an hour later we were finally inside the park! It has probably been 20 years since I had been to Sea World - needless to say I was just as amazed as Elle was at all the attractions the park had to offer!

Elle waiting patiently for us to purchase our tickets...it was already 100 degrees by the time we got inside the park!

We briefly stopped in to watch part of the Azul show before heading to the sea lion show - elle was so amazed to see the dolphins jump!

Checkin' out the sea lion show....Elle wasn't too sure what to think of the performers

After the sea lion show we headed to see Shamu. It was so hot by this point that we had to take Elle's hearing aids out because she had sweat just dripping down her little face. She never once complained or whined and after the Shamu show we all headed back to the hotel for a much needed nap! That evening we strolled along the River Walk and had a fabulous dinner at the Little Rhein Steakhouse....even Elle enjoyed sitting outside and enjoying the wonderful breeze.

Sunday morning we got to the park before it opened and the first thing we did as soon as those gates opened was head to see the dolphins.

Elle didn't want to feed the dolphins but we were lucky enough to have one come and swim right up to us. We all loved it - Elle wasn't too thrilled with the big dolphin being so close but the only thing she really objected to was leaning on the wall to get closer. As long as she was being held - she was totally cool with the up close encounter.

We checked out the aquarium, alligators and playground before heading to see the Azul show with the beluga whales and dolphins.

The Azul show was by far the best show EVER! Not only were the Beluga whales and dolphins amazing but the show also included amazing acrobats and synchronized swimmers. At several points during the show huge parrots flew over the audience. It was just absolutely amazing and kept Elle entertained the entire time. After the show, we went down front to say hi to some of the performers

little did we know that we were going to get a close up with one of the stars....

We had such a fun trip - despite the 100 degree weather. Elle was a little super trooper and did so well for all the traveling and heat! We left for home on Sunday afternoon and can't wait for the next time we get to go see the "baby beluga" as Elle calls the whales! We had so much fun with Uncle Jake, ViVi and Big Daddy. Elle loves them all so much so she was enjoying every minute of our quick little getaway!

A Little Heart Update

2011-05-28T22:55:00.001-05:00

We have known since September of 2010 that Elle's heart was going to need another repair. When Elle had her first open heart surgery, her surgeon came out of the operating room and told us that Elle's pulmonary valve was almost completely restricted and he did his best to repair it but there was no telling how long the repair would last. So we kind of had an inclinition in September of 2009 (after her first open heart surgery) that she would be back sooner rather than later. Well...we got the news a few weeks ago that Elle's next open heart surgery is scheduled for the beginning of July. I'm glad to know that we finally have a date after waiting since September of 2010. Now that we have hit June 1 - that day in July is coming closer and closer. I have chosen not think about the upcoming events - rather trust in my God for his name to be glorified. We pray everynight that God's name will be glorified in all that we do and this is no exception. Of course we pray for Elle's healing and her strength. I'm actually terrified of the recovery. She was only 6 months old for her first repair...she wasn't sitting up yet and she was still a little baby. This recovery is going to be so different. How do you keep a 2 year old down? She knows things now - she knows about doctors and nurses and the blood pressure cuff. She knows about shots and needles. I suppose we will cross that bridge when we get there. Elle is such a super tropper so she will probably surprise us all in how she does during the recovery time. For now though, we are packing in as many things as we possibly can before we will be in the hospital and recovery for the rest of the summer. I spent a few hours (yes hours) a few days ago filling up Elle's social calendar for June....our little lady is a social butterfly! Thank you so much for your prayers and support as we gear up for the next adventure for Elle and her little heart.

Animal Print Friday.....Then and Now

2011-05-27T22:57:00.004-05:00

Yep - I still dress Elle in animal print every Friday. It's a tradition...and one I absolutely love so it just has to continue! While I was cleaning up some files I found this picture...

Animal Print Friday - May 28, 2010

Funny enough....this is what Elle wore today (Friday, May 27, 2011)...

No planning on my part - this was just a coincidence...and almost exactly a year apart! Too funny. Today in gym class we had the end of the semester awards ceremony. Elle got a special ribbon that she was sooo proud of! She has therapy immediatelly after gym class and when we strolled in the doors of TCH - Elle immediately went up to all her friends (the employees and front desk staff) and showed them her special ribbon.

Triple Trouble...Maddie, Kayla and Elle...these little ladies are so funny!

Elle loves gym class - but I really think she loves being able to play with Kayla and Maddie...and swing from the uneven bars!

Elle's First Easter Egg Hunt

2011-04-18T22:42:00.002-05:00

April 16 Elle got to experience her first Easter egg hunt. We have been practicing for what seems like forever for this moment. Elle's PT is always coming up with creative ways to get Elle to work and lately we have been doing mock egg hunts so Elle could practice on squatting down and picking up an object with just one hand...and not putting both hands down on the ground. Finally on Saturday Elle got to put all of her practice into play for our neighborhood Easter Egg Hunt. It was so much fun! We went with Elle's friend Maddie. The girls had a good time...but it is so funny to see the difference in the two girls. Maddie ran right up to the Easter Bunny - Elle ran away from the Easter Bunny. Elle enjoyed the egg hunt...Maddie wanted nothing to do with it. Elle loved the fire truck....Maddie still wanted more of the Easter Bunny. They are just so funny! I am so thankful that Elle has a friend across the street to grow up with! I cherish these memories!

And this is how we knew it was time to go home....

Elle's 2nd Birthday Party

2011-03-21T22:02:00.000-05:00

March 19 we celebrated Elle's 2nd birthday party with a Mickey Mouse themed fiesta...including mickey mouse cakepops (thanks to directions from bakerella) and a moon walk. I'm not sure how many guests actually came but there were a lot! Which meant a lot of donations to the Ronald McDonald House because we asked guests to bring donations in lieu of gifts. So much fun and so many donations!!

We all had so much fun and were so blessed to have a house full of guests that love Elle!

After everyone left, Lee, elle and I went and enjoyed the moon walk - just the three of us. We had so much fun and I forgot how much fun moon walks are! Lee and I were doing flips and Elle was loving every minute of it!

After moon walk time, it was time to wind down watching mickey mouse before bed...

We are so thankful for our little miracle and neither Lee nor I can believe that our baby is 2 years old! Time has flown by way too fast...I wish time would just stop but then she does something funny and I see how far she has come. Everyday is a new day, filled with new wonders and new discoveries. I just love that little girl so much!

LaLa and Mad Dog's Wedding

2011-03-18T19:19:00.001-05:00

March 10 - 13, 2011 Lee and I headed to Oxford, Mississippi for one of my bestie's wedding. It was an absolute perfect weekend and we had so much fun! It was so much fun to be with all our friends and get to celebrate the marriage of two fabulous people!

Friday night before the rehersal dinner, my parents, my bestie meghan and her fiance and her parents and Lee and I all met up at Meghan's and my favorite bar in college. I was super excited when I saw my "hole in one" plaque I donated to the bar while in college. I got the plaque after making a hole in one at a golf tournamnet I played in during college. My spirit still lives at the Burgundy Room!

The Wedding Party

Lee and me at the reception

My sorority sisters...love them!

We had so much fun at the reception! It was a total dance party and we had soo much fun! As usual, I wish I would have taken more pictures...but Lauren had a fantastic photographer and I can't wait to get a few of his pictures framed for our house!

Congratulations Lauren and Madison! We are so excited for y'all!

Elle's First Rodeo

2011-03-06T22:11:00.001-06:00

Saturday, March 5 we took Elle to her first rodeo! March is Rodeo month in Houston and we were so excited when our neighbor Dan invited us to see Billy Currington with him. It was an all day event that started with the livestock show. Elle wasn't too impressed with the animals. She still isn't too sure what to think of animals up close and personal. She is fine when she can see them from far away. We did manage to get her on a longhorn for a brief second for a picture. The only thing that kept her from a total breakdown was that Mr. Dan was there. Elle is Dan's biggest fan and he actually spent a majority of the day carrying her around. She wanted nothing to do with mom and dad...it was only Mr. Dan!

She was fine on the longhorn until it started to move which was when the photographer decided to take the picture!

Elle checking out the cows...not too impressed

Elle and Dan. She was putting stickers on him and he was being such a good sport!

After the livestock show it was time for the Rodeo. Elle was thrilled by the "jumping cows" and "jumping horses" (bull riding and the bronco riding) and when the barrel races started Elle was totally amazed. Too bad her enthusiasm didn't last for the concert...by the time Billy Currington made his way to the stage...Elle was completely out.

Billy Currington put on a great show and we had a great time with Dan. He was such a super trooper spending all day with a 2 year old! Maybe next year Elle will enjoy the Livestock Show and Rodeo a little more...I'm hoping we can at least attempt the petting zoo (really because I want to go!) Despite being a little timid when it came to all the animals we still managed to have a blast! My how times change because pre baby - the Rodeo was about the concert and the beers!

The time has come...

2011-03-01T19:16:00.001-06:00

...For me to finally sit down and play blog catch up. I was told by a friend that I was going to be un friended if I didn't post something by Friday morning. I'm not going to lie - I actually had to go back through my way cool Erin Condren planner to see what has been going in the last month plus...

February 19 we were joined by some dear friends and family for the It's My Heart Walk. We had so much fun and were so blessed to have so much support!

Thank you thank you thank you to everyone that supported Team Elle's Angel's and Witt's Warriors!!

That same night we headed to Warrenton to help Mel's Grandbud celebrate his 80th birthday! The party was so much fun and Elle absolutely loved the band. She dragged everyone to the stage to sit there with her and listen to the bass and drums. We were so honored to be invited to celebrate with Mel's family in such a joyous milestone!

As February came to a close we packed as much as we could into the last weekend. February 25 we took Elle to her first baseball game. Ole Miss was in town to play the University of Houston. Since I went to Ole Miss and Lee is a U of H alumni...it was definitely a game we could not miss! She kept using her sign for "football" whenever she would actually sit down and watch the game...which wasn't very often because little miss wanted to climb every single stair in the stadium. For those of you former Ole Miss golfers....yes I am sporting the New Balance track suit jacket from circa 2003.

Saturday February 26 we celebrated our friend Jack's first birthday. Jack and his mom came into Houston all the way from California.. Jack is the cutest Army baby ever and we were so happy that he was able to come to Houston to party! Jack's mommy Kristina is one of my very oldest and dearest friends. She has been such a rock star being a Army wife and now she is the mom to a very special one year old!!

The group shot is decades in the making. We have all been friends since junior high! Crazy that we are all grown up now with kiddos of our own.

Jessica taught Elle how to sign "crazy momma" several months ago. For a while it was Elle's favorite sign...despite my objections. I caught Jess in the act of reinforcing her teachings! Look at the smile on Elle's face! Crazy Auntie Jess!!

Elle and her friend, Olivia, hanging out on the slide. During cupcakes Elle actually did taste the icing which was a shock to me! She's not a sweet eater but that cute little blue mustache made me smile all day long!

Our little sliding little lady...with her blue stained hands!

Kristina and the birthday boy

Sunday, February 27 we partied it up again at our friend Kylie's first birthday! Kylie's mom, Amber and I have been friends since high school. It was a weekend of parties! Amber had a moonwalk at the party and even though Elle hates the moonwalk during gym class, she climbed right on in and had so much fun!

Kylie got the coolest car EVER...and guess who climbed right on in when Kylie decided she didn't want to ride! Elle could have worn the battery on that car down if there wasn't a line to take the wheel!

We had so much fun hanging out with all of our friends all weekend long and we are so blessed to have such an amazing group of friends!

You better believe that this post is going to be back dated so I can play catch up with the rest of March!

Happenings from Mid February

2011-02-15T22:54:00.002-06:00

Elle in physical therapy working her upper body strength using the bicycle

So this is the first of several back dated posts to catch us up through today...beginning with Valentine's Day. So on February 3 when we received the good news from Elle's cardiologist that we could start planning her 2nd birthday party...it hit me like a ton of bricks...Elle has 3 little girl friends. I did a mini mommy freak out and confided in my friend Ali that I was scared Elle doesn't know any other children. She is really only around children for a 1 hour a week gym class and then play dates with out friend Maddie who lives across the street. Ali got me the in on a moms and tots group and thanks to her good word...I was able to sign Elle and myself up. This group is seriously awesome...stuff to do every single day of the week. If Elle didn't have therapy every day we would be at these awesome play groups as much as we could possibly handle it! So....our first adventure with the group was a Valentine's Day party. I even canceled therapy for the day so Elle could attend and be around kiddos for a change. It was so much fun! We met some fun new people but we mostly hung out with Elle's friends...Maddie and Kayla.

trying to get three little girls to smile was a task in and of itself!

lee's valentines gift to Elle was a set of golf clubs...the girl LOVES them! Every day I hear "dadda golf...momma golf....outside." Music to my little ears!!

Elle and Kayla at the park during another fun play date with our new play group

Where did February go? I have so many more posts to get up and on the blog...it might just take me the month of March to get February caught hope...let's pray it doesn't!!

To Make A Donation for It's My Heart

2011-02-15T22:10:00.002-06:00

To make a donation to our team for the It's My Heart Walk....or to join our team click on the link below:

It's My Heart

It should take you directly to our team's homepage. You can click on General Team Donation and it will take you to the donation website or you can choose to join our team as a walker.

Thank you for all your support! The more walkers....the merrier!!!

Gearing Up for the Heart Walk

2011-02-13T19:40:00.009-06:00

February 3 we had Elle's check up with her cardiologist. Poor little girl knows what is going on and as soon as they opened the door for us to be called back, the screaming and crying began. We see her cardiologist at the same location she goes to therapy every single day so no one was prepared to see the usual happy little lady break down into massive tears. She's terrified of the blood pressure machine....so much so that the nurse couldn't even take it! After weight, height and oxygen saturation check...it was time for the echo. By this time she had calmed down and sat perfectly still for the echo...thanks to Elmo being played on the television. After the echo it was time to wait for her doctor. One of the nurses brought Elle a crown to wear since she did so good during the echo. Dr. W came in and gave us the news...Elle's heart has gotten worse since her last echo in September, but we definitely don't have to rush into the operating room. We can wait until late spring or early summer before we have to go back! Whoo hoo!! God has answered our prayers and has given us more time for Elle to grow bigger and stronger before her next surgery.

Elle and Lee waiting for Dr. W...yes....that is Elle's smile when you ask her to smile for the camera...

It was wonderful news to get right before Congenital Heart Defect Awareness Week (February 7 - February 14). I know I have posted it before but it is just staggering to think that nearly twice as many children die each year in the United States from Congenital Heart Defects as from all forms of childhood cancers combined. Yet funding for pediatric cancer research is 5x higher than funding for Congenital Heart Defects (source: It's My Heart website: Children's Heart Foundation). Right now, we are gearing up for the It's My Heart Fundraising Walk. I've had the countdown on the top of our blog for several months now and we are less than a week away from the big event! Next Saturday we will be walking on Team Elle's Angels and Witt's Warriors to benefit It's My Heart and help change the statistic written above.

Join Team Elle's Angels and Witt's Warriors!

Keep the Beat It's My Heart Awareness Walk

Sam Houston Park: Allen Parkway

1100 Bagby

Houston, Texas 77002

Saturday, February 19, 2011

Registration starts at 8:30 - 10:00am

Walk starts at 10:00am

Family fun day from 11:00am - 12:00pm

I attend a Beth Moore Bible study during the week. This past week she asked if we could sum up what God has done in our lives in just one sentence. I've thought about it all week and here's my sentence: Two years ago, God blessed us with a baby with broken heart and many other medical problems, but it is through HIS grace that we see the miracles of our Lord Jesus Christ on a DAILY BASIS!

Min Mou Jammies

2011-02-01T21:47:00.004-06:00

Yesterday morning I experienced a first with my almost 2 year old little lady. As I was getting her dressed and ready for the day, I held up an outfit and said "Elle, it's time to get dressed." She looked directly at me and said "NO!"...all while shaking her little head. Her reaction kind of took me by surprise and so I asked (half laughing) what she intended to wear for the day. She opened up the drawer in her dresser that holds all her pjs.....fished around for a little bit and then came out holding a pajama top with Minnie Mouse on it. She held it up for me to see and proudly announced "Min Mou jammies." Alright...Minnine Mouse jammies it was!

I just had to share these pictures...Elle and Lee hitting golf balls....or rather Lee hitting golf balls and Elle cheering him on

Birthday Bliss

2011-01-29T09:00:00.006-06:00

I'm officially in my last year of my twenties as of yesterday. The last few days have absolutely filled my heart with contentment. My birthday celebrations started on Wednesday with lunch with my bestie Shannon and her son Parker. Our original plans were lunch and then a walk around Hermann Park but we soon found ourselves at the zoo. Oh my gosh! It's been probably 20 years since I went to the zoo last and I was absolutely amazed! Elle loved it too....it was her first time to be up close and personal with all those amazing animals.

We had so much fun with Shannon and Parker. I've said it probably 10x in the last few days but we are truly blessed to have them as friends. Shannon and I have been friends for over a decade and it is so amazing to think that our little ones will be able to grow up together!

Wednesday night we met my parents and brother for dinner at one of my favorite restaurants. Uncle BenBen and Elle had a great time together. I just love these pictures of the two of them!

Animal Print Friday (yes Elle still wears animal prints every Friday...) we met our friends for our mommy and me gym class and then we met up with my parents and Lee for lunch. We even got to see some of my former co workers after lunch and it made my birthday day even more amazing!

Dinner we met up with Lee's parents and grandparents. What a perfect way to end my birthday!

I am so blessed to have such wonderful friends and family. Thank you to everyone for making my birthday so incredibly special!

one last pic of Elle playing with Lee's earphones....

Just Dance

2011-01-26T21:35:00.001-06:00

Elle and Lee like to have dance parties...this one just happens to be in the car....

Momma's Gotta Have Some Fun Too....

2011-01-17T18:51:00.010-06:00

This past weekend I escaped the dreary weather of H Town and headed to Mississippi for one of my besties bachelorette party. It was so much fun meeting up with all my favorite girls for a weekend of girl talk, dancing, eating, drinking, spa time and even a little gambling. We partied the weekend away at the Beau Rivage in Biloxi. It was soooo much fun! Lauren made the perfect bachelorette and is going to be an absolutely stunningly beautiful bride.

We spent Friday night exploring the casino and then Saturday afternoon (when we all finally got out of our pjs) we headed to the spa for manicures. After manis we sent Lauren on her merry way for a massage and some time in the sauna while we decorated one of the rooms for a little pre party.

Lauren's friend Lindsay even brought the serving trays and chargers! What a pro!

Lauren arriving for her party (greeted by her beautiful sister)

The first toast of the evening....there were many more to come

After our little pre party we went to dinner and then out for some dancing and eventually some gambling

Laura was a big winner....

We all had so much fun spending the weekend together. It was the perfect bachelorette party weekend! Of course, traveling on Sunday was a little long but thankfully Meghan and I were on the same flight from Jackson to H Town. She had a lay over before continuing on to Colorado so she came down to baggage claim with me to see Lee and Elle. Elle was super excited to see her Auntie Meghan.

She showed Megs what a big girl she is and went for a little walk...i love these pictures!

I am so thankful that I was able to spend the weekend with Lauren and all the other wonderful girls. My heart is full after spending time with my girls who I usually just get to talk to on the phone (we all live in 4 different states). It was so much fun spending time and getting to know better Lauren's sister, cousin and best friend from high school. They are all so much fun and we all instantly clicked. The wedding is in just a few short months and after spending the weekend with a majority of her wedding party....I can't wait for the wedding! It is going to be soooo much fun! I came back renewed and ready to face the week and all Elle's appointments. The weekend cemented the fact that momma's gotta have some fun too!

News in the New Year

2011-01-11T07:41:00.000-06:00

It's official...we have a WALKER in our house! New Years Day, Elle just decided that it was her time to start walking. She had been walking from sofa to chair to kitchen cabinet to wall for a long time but over the weekend she really started to walk more independently....standing up in the middle of the room and walking into her room or to the front door or to her new kitchen. We are so excited about this new milestone! After 8 months of crawling, physical therapy twice a week, and going to gym class once a week she is walking more than crawling! Whooo hooo!! Her PT was super impressed when we saw her the first week in January. Actually, everyone at TCH was. I didn't carry Elle back to therapy, I let her walk. She had to pass next to the nurses station and all of the nurses were standing there watching and cheering as Elle walked passed the nurses station and down the therapy hall towards the gym. What a little super trooper!

Elle and Lee playing in her room

Our New Years resolution this year is to do one home improvement project a month. It doesn't have to be big...it can be to hang up the pictures that have been sitting in our study for almost two years now....so....the first project of 2011 was to hang this bad boy above our fireplace. Our other tv was starting to develop a bad picture and it was going cost just as much to fix it as to buy a new television...so we took the plunge and bought a new (larger) tv. Anyone interested in a 50" tv with a not so perfect picture?

The cables from the old tv need to be moved and then I will be able to put more pictures up on the shelves on the left side. Elle likes the new tv...can you spot her staring up at Mickey?

Here's the before...there was a mirror hanging above our fireplace before it was replaced by the new tv

Elle is continuing to make strides. Her eating is still terrible but we do continually work on it. I'm hoping that one day she will just wake up and want to eat orally and not by the feeding tube. She has started to cringe a little when I put her backpack on her so I know she must get annoyed carrying around her feeding tube in her backpack 4x a day. Maybe that is what will be the straw that breaks the camels back...no more backpack if she starts to eat orally!

I promise she did get SOME food in her mouth

This is pretty much the progression of how this happens...I'm usually telling her "no - don't rub your face" and then she goes and does it...oh well...I'm glad to say that she doesn't seem to have any food aversions....now we just need her to eat enough to get some form of nutritional value

One of the things that has improved drastically are Elle's coloring abilities. Just this past week I found evidence that she is just as good on the tile in the kitchen as she is on paper. Good thing it's washable!

Happy New "Ear"

2010-12-31T19:17:00.002-06:00

From the hands (and mouth) of a deaf babe...

Happy New "Ear" from our family to yours!

Pictures from Christmas

2010-12-29T16:53:00.001-06:00

Oh the wonders of Christmas!

We started off of Christmas Day by checking our what Santa left in our stockings...Santa left Elle a Mickey Mouse plate...she LOVED it!

She also got a Mickey Mouse sticker book....we will have to be getting more of those!

And then we walked into the front room to see what Santa left us under our Christmas tree...

Santa brought Elle a really cool convertible trike...she already has gotten some use out of it when we rode over to our friend Maddie's house

And she also got a KITCHEN! It is sooo cool!

After we opened up all our Christmas gifts at our house, we all got dressed and headed over to ViVi and Big Daddy's for breakfast and more presents.

Elle got a Dyson vacuum from ViVi and Big Daddy....how cool is that?! Just like her mommas! When she opened it up - her eyes got big and she said and signed "Help momma clean." Oh I'm such a proud momma!

We had so much fun with ViVi, Big Daddy, Uncle Jake and Lee's aunt and uncle Jane and Paul.

After spending a few hours with ViVi and Big Daddy, we loaded up all our goodies and headed over to my parent's house for lunch and EVEN MORE presents! The first thing Elle saw when we walked in was her new Mickey Mouse glider...she would sleep in that thing if we let her!

She opened a majority of her gifts from right there in that chair!

Uncle Benny got her a doll - she "allowed" the doll to rock for a little bit - it's going to take a while for her to get accustomed to this baby doll. It's a lot bigger than the one she usually plays with!

Elle eventually only wanted to play with my dad's new Sonicare toothbrush and his camera....she was trying to take pictures of herself...pretty funny to watch her squint and smile expecting the flash to go off!

After opening up all our gifts, we went into the kitchen for lunch and bubbles! Elle blew her first bubble - you can see in the picture how excited Uncle Benny and Elle were after she actually blew the bubbles!

It was such a fun filled jam packed day. We all napped over at my parent's house for a little bit and then we went to Lee's grandparent's house for dinner. Needless to say, we were all tuckered out by the time we finally made it home on Christmas Day! We are so blessed by such amazing families!

On Tuesday, we went over to Aunt Mel and Uncle Austan's house to celebrate Christmas with them and Witt. I just can't get over how much of a little boy Witt has grown into! We got him some stacking pans and he loved banging them and shaking them. It is so awesome to see that little guy being so lively and into everything that is going on around him!

By far, Elle's favorite gift were the handmade bows Aunt Mel made for her. When the wrapping paper came off, Elle's eyes got so big and she literally started jumping up and down. Her mouth dropped and when she could finally talk after being so overcome with excitement all she could sign and say were "does, does, does" and pointing to her hair. She still asks to see all her "does" every morning!

What a wonderful Christmas spent with all our family and friends! Thank you to everyone who made this so special for Elle and our family!

Merry Merry Merry

2010-12-26T22:07:00.001-06:00

Merry Christmas and Happy New Year

from

Our Family to Yours!

"And the angel said to them, "Fear not, for behold, I bring you good news of great joy that will be for all the people. For unto you is born this day in the city of David a Savior, who is Christ the Lord." Luke 2:10-11

Sittin' with Santa

2010-12-17T08:07:00.003-06:00

So yesterday morning I loaded Elle up in my car and headed to the mall. The whole way there I was talking about Santa and his beard and red coat and pants (we are working on clothing signs so it was a teaching opportunity). She kept signing "santa" and saying hohoho so I figured we would be in for a good picture. Nope! As soon as we rounded the corner in the mall and came face to face with Santa the look on Elle's face turned from blissfully happy to a mad little girl. The closer we got to Santa the faster her "all dones" were being signed. I don't think I have ever seen her shake her head no that fast before! I asked her if momma could sit with Santa and she said yes so after an 18 year hiatus....I finally got to sit with Santa again....can you tell how excited I was?!

Santa noticed Elle's hearing aids and signed "I Love You" to her and she blew him a kiss. He also gave her a coloring book and she responded by signing "thank you" so she wasn't totally terrified of him. Maybe next year she will smile for the camera!

Busy Busy Little Bees

2010-12-13T21:24:00.009-06:00

Our days usually fly by - but with so much on our to do list - the last few weeks have flown by faster than usual.

Elle's super cute Christmas tree outfit

The first weekend of December, Lee got to work on our Christmas lights. He had a few little helpers in the front yard...Elle and her friend, Maddie. I just love those two little girls and I can't wait to see these two little ones grow up together!

That afternoon we helped celebrate the first birthday of our very favorite 1 year old. His momma and daddy hosted an amazing winter wONEderland filled with super cute art projects, amazing hot chocolate and a photo "booth." After we partied the afternoon away and visited with our precious Witt, Lee and I took Elle to River Oaks to look at the Christmas lights. River Oaks is the uber ritzy area of Houston where the mansions sprawl over acres of land. Absolutely beautiful. I can honestly say that when we would round the corner and come across some of the beautiful lights I was clapping with giddiness. Elle didn't really share my enthusiasm but a few of the displays caused her little mouth to fall open and her eyes were glued to the window. I just love seeing her experience new things! That night when we got home, Lee informed me that we needed 15 more strands of lights for our rinky dink tree in our front yard - he's dreamin' big!

Our next big task on our to do list is to get our Christmas cards out. Well - first we have to take the family picture and with 2 dogs and a toddler - that is much easier said than done.

Elle all bundled up to help Lee feed the dogs Elle putting up her two new big ornaments on her tree in her room...her outfit is a repeat from last year...so glad it still fits!!!

Elle and Santa December 2009

The First of Many..

2010-12-01T22:11:00.005-06:00

Christmas outfits that is....

This outfit is actually a repeat from last year. It was a dress last year and a top this year. I love getting double use of of really cute outfits!

December 15, 2009

This little lady has more Christmas outfits than she can probably wear the entire month of December. We might be having wardrobe changes midday just so she can wear all her cute outfits we've collected over the past year. That's right...over the past year! Anytime a Christmas outfit hits the sales rack, it gets snatched up and hung up in Elle's closet. Needless to say, we didn't realize just how many outfits she had.

For the past year, I have been wanting a white Christmas tree for Elle's room. So the other day I took my little stash of "home decor" money and headed to Wal-Mart to buy Elle her tree. It's so cute and as soon as she saw it light up, her eyes were as big as saucers. She tried to help me decorate it tonight but her favorite part was taking the ornaments off and hiding them behind her back and then asking "where."

It's so funny to see her progressing each day. Today she stood up all by herself a few times - totally unprompted. She has also learned how to "smile" when you ask her to.

Her little smile is absolutely the cutest thing. I just get a kick out of asking her to smile and then seeing this little face!

And...just for kicks...this is her "what do you mean NO" face...right before she bursts into tears ( and yes...she only has one pig tail in....not sure what happened to the other bow and pony tail holder...I'm sure I'll find it some really random place!)

Elle saying her ABC's

2010-11-29T07:46:00.001-06:00

I saw sitting with Elle signing and saying the ABCs to her when she started to join me. I just love that little voice!

Another Quick Trip

2010-11-22T22:03:00.001-06:00

November 19 Lee and I packed Elle up and headed to Baton Rouge, LA for a shower for one of my besties. I was so uber excited about the trip - not only were we getting to bring Elle along but it also meant spending some quality time with my friends from college and their families. Lee was pumped to get to see all my friends but he was more excited about seeing their dads and hubbies/fiances. Those boys always seem to get in trouble together! However I expect something to go - I should just think that the opposite will happen because nothing ever seems to go as planned. Elle got sick in the car once we made it in to Louisiana and the trip that should have taken us 4.5 hours, took us 7 hours because of 1) a puking baby and 2) massive and terrible traffic in both Texas and Louisiana. By the time we finally made it to our hotel, Elle was exhausted so I took care of her while Lee went to the nearest drug store to get some pedialyte. An hour later, he returned - traffic was that bad (did I mention the store was about 2 blocks away?). I was able to get dressed so that by the time Lee got back to take care of Elle, I could leave and make it for the last few minutes of the shower for Lauren and her fiance, Madison. I am so glad I got a few minutes to spend with my friends. These girls are my heart and although a few of them were missing, they were still there in spirit!

Corey, Me, Laura D, Shannon and the future Mrs. Lauren Turner

The shower was beautiful and in case you can't tell by the pictures - we all had to wear our school colors. Oh I love the look of red and blue! It sure beats the nasty color combination of purple and gold! The scarves were a gift from my mom to each of the girls since she and my dad couldn't be there for the party. I loved the few minutes I got to spend with my wonderful friends. It make the hellish 7 hour trip seem like a faint memory. By the time I got back to the hotel, Elle was asleep and Lee had her hooked up to a pedialyte feed. Thank goodness for her feeding tube!! Wouldn't you know that the puking princess woke up on Saturday morning blowing and going?! We thought for sure our day in Baton Rouge was going to be cut short and we would be heading back to Houston first thing....but nope. Elle woke up at her usual 6:30am and the first thing she signed was "Daddy bath stinky." Not sure if she meant that Lee needed a bath or that she needed him to give her a bath because she was stinky. Either way - we were so shocked that she signed "stinky." Neither one of us knew that she knew the sign or the context. She is such a funny little girl. Since she appeared to be feeling fine and was definitely not at a loss for energy - we all got cleaned up and went over to hang out with our friend's, The Miller's. Mrs. Sheila and Mr. Dan are Laura's in laws and have a beautiful house in Baton Rouge. It was absolutely wonderful to be able to spend the morning with Mrs. Sheila and Mr. Dan, Matt, Laura, their son Jackson, Corey and the other house guests they had. Elle made an instant connection with Mrs. Sheila and didn't want Mrs. Sheila to be out of her sight. Every time Mrs. Sheila would leave the room, Elle would start looking for her and crawl right on over to wherever she was. It was so sweet! This was also Elle and Jackson's first meeting. Elle kept looking at Jackson like "I'm usually the only baby here - who are you and why is my mom holding you?" Pretty funny!

Jackson

I love these pictures! Elle's facial expression says "great, another picture" and Jackson's says "get me outta this chair!"

Classic Elle - "really? another picture?" we really need to teach that girl how to say cheese!

Again Elle is looking at Jackson saying "who are you?"

Laura (Aunt Eldy) and Jackson - I just love this picture of the two of them

I promise Lee was there - unfortunately we didn't' get any family pictures. Shoot - we didn't even take any pictures! All of these came from Laura D - thank you Laura!

our little Ole Miss Cheerleader at the Cabela's store

After our morning with the Miller's, we took Elle to see the fish at the Cabela's store outside of Baton Rouge. The girl loves to look at fish. The store was amazing! Not only did they have some pretty large fish tanks, but they also had a wildlife museum and great displays with animals. Elle loved it. She was definitely the only Ole Miss cheerleader walking around the store!!

After our adventures at Cabela's we met up with the rest of our friends for an afternoon of catching up, eating yummy mexican food and watching a really great football game as Ole Miss and LSU played. We had so much fun with the Jexes and the Richardson's. Elle got to meet Lauren's twin nieces for the first time. I show her their pictures from their blog all the time but she finally got the chance to meet Natalie and Claire in person. They were all so cute in their cheerleading outfits! We had such a good time and were so sad to leave but we had to head back to Houston. So around 5:00pm - we loaded Elle back into the car and headed to Houston. The trip back wasn't any better than the trip going to Baton Rouge. We barely made it into Texas before Lee and I both got extremely sick. We had to spend the night in a hotel because neither one of us could drive. It was awful - I wouldn't wish that kind of sickness on anyone. 10 hours of not being able to keep anything down later - we were finally able to fall asleep for about an hour before Elle woke us both back up. Lee and I were so weak and still not feeling great that the only thing we could eat were ice chips as we made the drive back to Houston. Thank goodness Vickie met us at our house and took care of Elle while Lee and I were able to sleep! The good news about being so sick...I lost 7 lbs....right before Thanksgiving...whoo hoo...bring on the extra calories!

Despite the traveling mishaps, it was so much fun to see all our friends. I wish we all lived closer, but because we don't - weekends like this past weekend are so much more special! I can't wait for March and Lauren and Madison's wedding! Whoo hoo!!

Eldy, here's your post

2010-11-17T21:31:00.015-06:00

My friend Laura told me that blogger should kick me off for not being a prompt updater of our blog. The guilt trip won me over and I finally sat down to upload pictures and make a re cap of our last few weeks.

We've had some emotional last few weeks (that I didn't mention in earlier posts). Lee's grandmother passed away on October 14. She is the wonderful woman Elle is named after. By the time I came into the family, Eleanor (Grandmother Lupher) was already battling Alzheimer's. The first time I saw Eleanor light up was when she met Elle for the first time. It was Elle's first birthday and as soon as Elle was put in Eleanor's lap, all traces of that horrible disease left and Eleanor was the vibrant, beautiful, happy, caring woman that I had heard stories about. Lee equated her reaction to meeting Elle as a little girl opening up the perfect gift on Christmas morning - that was the type of sheer joy Eleanor was showing when she met Elle for the first time. I will never forget that moment.

Eleanor and Elle meeting for the first time

March 27, 2010

Fast forward a few weeks and we received the horrible news that Elle's favorite nurse, Wendy, was leaving TCH. Wendy was an exceptional nurse and she will be greatly missed. I cried as we said goodbye for the last time. I'm sure if Elle would have realized what was going on, she would have cried too. To this day, she still looks over at Wendy's desk to see if she is sitting there. We were on the emotional roller coaster for a few days and then we were hit with the news that Elle's Occupational Therapist was also leaving TCH. This news came out of left field and I was completely thrown for a loop. We had been with her for 16 months so it was hard to receive the phone call that she was no longer with TCH. I hate change and all this happened within 2 weeks of each other.

Elle bored at the dinner table wearing her "Mommy's sugar and spice" apron.

I told my friend Meghan that ever since Eleanor's passing, I have felt like I am struggling to keep my head above water. I kind of feel that now, a month later, things are starting to calm down and we are getting back into our normal routine. Starting next week, Elle will be getting feeding therapy from her speech therapist. I am looking forward to this and hoping she can help come up with some new and exciting ways to try to get Elle to eat food.

Elle eating broccoli or cheesy trees as we call them to entice her to eat

Elle is still blowing and going. She is getting so brave now and will walk from the island to the kitchen cabinets and then to the hallway and will eventually make her way to our bathroom where she has successfully figured out how to turn on both the cold and the hot water in the bathtub. Her record for outfit changes in one day due to being soaked is up to 4.

The Bathtub Bandit caught in the action

Trying to get a picture of this go go getter is getting to be pretty difficult

Two weeks ago Elle had her yearly evaluation for ECI (Early Childhood Intervention). While her communication skills are through the roof, she is still struggling with fine motor and gross motor. She was actually "rated" as having the fine and gross motor skills of a 9 to 10 month old. That day, my mom and I headed to the re sale shop to load up on blocks and other toys similar to the ones the therapist used when evaluating Elle. We have so many toys and blocks and shape sorting things and you name, we probably have it but the more practice Elle has and the more stimulation she has, I feel that the better she will get at both gross and fine motor skills. The abundance of new toys did create a slight clutter problem in Elle's room. After finding a free small bookcase that someone was giving away and a few coats of spray paint, the bookcase is the perfect holder for Elle's new toys.

Elle's room after she discovered the bags of toys

Thanks to the free bookcase everything has a place! The angel picture was hanging in Eleanor's room and I am so glad we have it in Elle's room.

We have a fun filled weekend coming up and I am so excited that Elle will get to wear her new Rebels cheer leading outfit for the first time! Maybe it will help our Rebels beat the LSU Tigers! No matter how badly we lose, this is always my favorite game of the year...and can you believe it...next week is Thanksgiving and there are only 38 days until Christmas. Crazy how time flies.

Longest Yet....

2010-11-08T07:38:00.002-06:00

Longest signed and spoken sentence yet...

Longest steps - 22 during physical therapy - the squeak are her weesqueak shoes

October Wrap Up

2010-11-04T14:26:00.010-05:00

The weeks leading up to the last weekend in October have been an absolute blur. We had a lot going on in our family and I am just now sitting down to finally post pictures and play catch up.

Elle in her Frightening Friday dress I made for her from 10-22-10. It was my first attempt at clothing for Elle. I made the pattern from 2 of Elle's other outfits that I liked. It crisscrossed in the back - super cute and something she will be able to wear next year too!

The girl is trying to stand up on her own...she's so close to walking and standing up on her own!

On October 23 we got to help celebrate the 2nd birthday of a very special little boy - a little boy we love so much and are so thankful for...Elle's precious cousin and our precious nephew, Witt.

My SIL had her house decked out in decorations that she made and had a candy bar that was just too cute for words! Pictures don't do it justice...and...she made everything for the party! I forgot our camera so I didn't get any pictures of Elle and the birthday boy. He was decked out too in his "2" outfit. We are so blessed by his little life!!

Frightening Friday on October 29 - I dressed Elle up in the super cute pillowcase dress my mom found at a craft show and we headed to the pumpkin patch. Another first for our little one.

Typical Elle poses - we can't take pictures of her because she is always trying to walk to us when we sit down to take the pictures!

This was Elle's initial reaction to the pumpkins...

I asked her in the car before we got out if she wanted to see the pumpkins. She was signing "all done" and "no pumpkins" before we even stepped foot in the pumpkin patch. I should have known that a major meltdown was going to happen...but I still tried. Good thing ViVi came and saved us all and Elle actually ended up enjoying herself...but only when she was pushing the wagon. She didn't want anything to do with those pumpkins! (if this was her reaction to pumpkins...I am dreading her reaction to Santa!)

We stayed in our pajamas on Sunday - all of us feeling run down. Lee from hunting and Elle and myself from having a garage sale on Saturday. We all slept a majority of the day and finally got up and got dressed to go to Trunk or Treat.

This was our first Halloween to be able to trick or treat with Elle Belle. While she had 4 outfit changes last year and I did get to play dress up with her - we were only 4 weeks post open heart surgery so needless to say, we kept Elle inside and away from all our trick or treaters. This year Elle got to experience "Trunk or Treat" at our church. She loved seeing everyone dressed up and kept asking to see the pumpkins. Pretty funny that was what she wanted to look at considering her reaction to the pumpkin patch!

Halloween Edition of Animal Print Friday

2010-10-15T23:30:00.000-05:00

Yes, I still dress Elle in some kind of animal print every Friday. Whether it's an outfit with some kind of animal on it or actual animal print - I still love the tradition! Since it is Halloween time, we are combining Animal Print Friday and Frightening Friday (thank you Laura D)!

Our little kitty cat standing in front of our Halloween Countdown Banner

I got my inspiration for the Halloween countdown banner from Pottery Barn Kids. Theirs sells for $59.00 - I made ours for $13.00 and still have tons of felt left over! Each day is a little pocket that holds candy...so our theme for October is "a dum dum a day keeps the doctor away!"

and just because I love this pose....Elle and the dogs

Vote for Jack!

2010-10-14T08:25:00.000-05:00

One of my besties entered her son into the Gerber Generation Contest. She is dilligently drumming up votes for her precious son and so am I!

PLEASE VOTE FOR JACK!!!

* Go to www.gerber.com/photo

* Search ID # 139000

Why Didn't You Just Say So....

2010-10-13T21:11:00.002-05:00

Lee had to hide the camera behind his arm so Elle wouldn't see it...thankfully she didn't and we were able to capture HALF of the conversation she had with us tonight at dinner

I know I've been away from blogging for too long when....

2010-10-12T18:18:00.013-05:00

I get an email from my brother with the subject of "Update your blog" and the message said "I need to see pictures of Elle." We've had some pretty significant events in the Lupher casa over the course of the last month.

September 23 Elle turned 18 months old. It is so hard to believe that she is 18 months old! She is progressing so well - sign language and speech is going great, she is trying so hard to stand up on her own and we are still working on eating. She is growing like a weed and is 23lbs and 31 inches long. On the afternoon of the 23rd, we had Elle's 6 month appointment with her cardiologist. I was terrified going into the appointment dreading what he was going to tell us. During my Bible study that morning, the leader had mentioned Job 42. Thankfully I had my Bible with me and I was able to read that scripture before we walked in. Job 42:1 "Then Job replied to the Lord: I know that you can do all things; no plan of yours can be thwarted." Just reading that scripture before we walked in gave me so much peace. The appointment itself was not what we expected - the echo tech was out sick so we had to reschedule for the next week to bring Elle back in so that an echo could be done. Talk about a major letdown! Oh well - the Lord has perfect timing!

September 24 we celebrated the one year anniversary of Elle's open heart surgery by taking heart shaped cookies to all the wonderful therapists, nurses, doctors and admin at the TCH outpatient center we are at every week. They have done so much for our family over the course of the last year. They work so hard to help Elle learn and grow and she has come soooo far in a year. I remember sitting in the waiting room before the anesthesiologist came to take Elle back for her surgery. It was so hard to sit there holding Elle knowing that the doctors would be coming at any moment to take her into the operating room. Lee and I were there reading books to Elle and saying prayers for not only her recovery but for the surgery team that would be fixing her little heart. 12 hours later we were able to see Elle as she came out of surgery. We were so thankful she made it through the surgery ok and so relieved to be able to see our little angel. Words can't even describe the feeling of seeing your child as they come out of open heart surgery. Words also can't describe the sheer happiness we feel a year later seeing her grow and thrive.

Elle in her cute heart outfit - celebrating her 1 year anniversary of joining the zipper club!

Elle and I reading before they took her back for surgery September 24, 2009

Left picture - a few days post surgery - September 27, 2009 Right picture - 6 days post surgery - September 30, 2009

We had re scheduled Elle's echo for September 30. She was a perfect little angel during the entire echo (like having an ultrasound on your heart....same type of wand....same gel....pretty much the same thing). She was perfectly still on the exam table and watched a movie while the tech did her work. When it was finished, we were taken to a private waiting room. Dr. W came in a few minutes later and asked one of the nurses to come and get Elle so that he would have our undivided attention. He updated us on the status of her heart. It has progressively gotten worse over the last 6 months. His feelings were that she would have to have surgery sometime in the next few months. Lee and I weren't surprised by this at all. We had expected to hear it. Dr. W was going to contact Elle's surgeon and have his team look at the echo and then contact us with a plan of action. So...more waiting.

Friday, October 1 Lee and I left for a quick trip to California to see a very dear friend get married. We left at 7:00am on Friday morning and our flight left California at 3:50pm on Saturday. We were there for 30 hours and then back home - but totally worth the super quick trip. We got to see a fabulous wedding and catch up with old and dear friends. It was so sad to leave on Saturday afternoon.

October 4 we heard from Elle's cardiologist. He had talked with Elle's surgeon and another one of the surgeons and after reviewing her echo, they both felt like she was well enough to wait until January. We will go back for another echo in January and the surgical team will make their decision for surgery then. It was good to hear that the surgical team is pleased with Elle's progress and growth and feel confident in waiting a few months for her to grow and get a little bigger.

October 6 was mom's night out with one of my besties. Shannon invited me to the Carrie Underwood concert and it was soooo much fun. Her concert was amazing! When she sang "Jesus Take the Wheel" I started to tear up and then she went in to the most beautiful rendition of "How Great Thou Art." It was absolutely amazing! I had so much fun with Shanny. We were talking that night about how we can go weeks at a time without seeing each other and then meet up and it's like we see each other everyday. I wish we lived closer (we live an hour apart) but not seeing her everyday makes me cherish our friendship and the time we do get to spend together so much more.

Over the last month, Elle has been blowin' and goin'. She is getting into everything! While she isn't walking yet - that isn't stopping her from climbing the shelves in the fridge!

APF pics....love love love the sale rack at Dillards for her super cute new zebra outfit!

We are working so hard at PT on her standing up on her own. She works soooo hard and is doing such a good job! I filmed this at the end of therapy....after an hour of hard work....so....needless to say.....she was tired.

It's My Heart

2010-09-19T21:35:00.006-05:00

On the top of our blog I put a countdown to the It's My Heart Walk. I am so excited about this walk and hope that we can raise a lot of money and generate support for It's My Heart. It's My Heart is a wonderful non profit organization created to provide support to and advocationg for those affected by Congenital and Acquired Heart Defects. Through awareness, resources and education, It's My Heart creates alliances and networks among families, groups, hospitals, and the community. Did you know: * Nearly twice as many children die from Congenital Heart Disease each year as from all forms of childhood cancers combined. Yet funding for pediatric cancer research is 5x higher than funding for Congenital Heart Disease. (Source: Children's Heart Foundation) *Congenital Heart Defects are the # 1 birth defect (source: March of Dimes) * Congenital Heart Defects are the # 1 cause of birth defect related deaths (Source: March of Dimes) * About 1 out of every 100 babies born each year will have some sort of Congenital Heart Defect - approximately 40,000/year (Source: Children's Heart Foundation) * The American Heart Association directs only $0.30 of every dollar donated towards research. The remainder goes towards administration, education and fund raising efforts. Of the $0.30 allocated for research, only $0.01 goes towards pediatric cardiology. (Source: Children's Heart Foundation) * The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year (Source: Children's Heart Foundation) * Of every dollar the government spends on medical funding, only a fraction of a penny goes toward Congenital Heart Defect research (Source: Children's Heart Foundation) * Though research is ongoing - 35 types of Congenital Defects have been identified I'm feeling a mixture of emotions as I write this because September 24th is the one year anniversary of Elle's first open heart surgery. However, this Thursday, September 23 (Elle's 18 month birthday) we will see her cardiologist to determine if she will be having another open heart surgery before the end of the year. We fully trust in God's perfect timing and know that through HIM all things are possible! Please go to the It's My Heart Website for more information about Congenital and Acquired Heart Defects.

Labor Day Weekend and a Quick Trip to the Big Easy

2010-09-16T21:48:00.011-05:00

Labor Day weekend we went down to Matagorda with my parents. We did some fishing and Elle got to the drive the boat a few times. She is such a super trooper. She and my dad sat on the front of the boat while Lee, my mom and I all fished. They read books and Elle learned the art of throwing crackers overboard and watching the seagulls grab them. We even saw an alligator - not the greatest of experiences because it surfaced 8 feet from our boat and scared the crud out of me...but...Elle got to see an alligator. My mom and I totally out fished the boys. That only happens once in a blue moon so I do feel the need to mention it!

Elle and I had our usual uber busy week and then last Friday we were lucky enough to have dinner with my bestie Shay and her family. Shannon is the busiest person I know and it was so great our schedules worked out that we would both be in town on the same night. We were all so glad that we were able to spend a few hours with her and her wonderful family! Elle was hamming it up big time.

i think this pic caught her staring at Shay's beer bottle...we're going to have to keep a close eye on Auntie Shay and Elle...this seems to be a problem when the two of them get together

Elle and Auntie Shay in July of 2009 - again - Elle only had eyes for that bottle!

Saturday morning Lee and I left Elle with Mark and Vickie and drove to New Orleans for the Ole Miss v. Tulane game. We met up with my parents and all our friends for lunch and then headed to the stadium for some tailgating. Oh New Orleans - how I love and hate you all at the same time! We had a great time - watched some of the game, caught up with old friends and got to see our long lost friend Becca. She's not really lost - but when you call St. Thomas home it's not very often that you make it back to the States!

Patrick, Becca and Me inside the Super Dome

Eating lunch with our fabulous friends who we don't get to see often enough!

Laura and Me before the game...Lee was mad we took him away from the free beer at the tailgate and made him go to the stadium....not sure why the pic of Lee and me is so tiny but we were having a good time! And I do have to point out that these pictures were taken after many hours outside in the blazing heat and after a few Blue Moons....

The only good thing about the drive back on Sunday was we got to stop in Baton Rouge and meet Laura and Matt's 3 month old son, Jackson. I am so in love with that little cutie pie. Words can't even begin to describe how cute he is and pictures do not do him justice!

We made it back to Houston and headed straight back out the door to go eat for Mark's birthday. Happy Belated Birthday Big Daddy!

Shamless Subliminal Message

2010-09-09T21:45:00.002-05:00

It's college football time and I am preparing Elle. She has a huge selection of red, white and blue outfits - all embroidered with "Ole Miss" or "Rebels." And this is my latest tactic to ensure Elle's blood bleeds red and blue just like mine...

Family Vacay

2010-08-31T18:56:00.014-05:00

August 25-29 we loaded up Lee's truck and headed down to South Padre Island for a mini vacay. We went with Lee's parents and the added help with Elle was definitely needed for our little go go getter! I didn't take any toys for Elle to play with - only books and her flash cards. If you don't already have an LL Bean large tote - get one (plus Nina Garcia says that every woman must have one)! The thing is perfect for loading up books and toys for car trips. It sits right next to Elle and she can reach in and grab as many books as her little car seat will hold....plus it's made out of uber durable canvas...the thing is indestructible! We made it down to the island late Wednesday night and woke up early Thursday morning. The day was perfect and our morning walk/run was wonderful on the beach. Even the dogs got to enjoy a morning run. Later on that afternoon we went over to Port Isabell for some shopping.

Friday morning, Lee, Mark and I went fishing with a guide. Vickie stayed with the princess while we enjoyed a morning of good fishing.

Being Animal Print Friday, Elle was sporting her new bird outfit. I just love it! It has birds and eggs all over it and is just too super cute!

The last time we went down to SPI, Elle started crawling and pulling up and cruising all in the same weekend. We were hoping she would start walking during this trip. She didn't start walking, but she did start coloring which we have been working on forever!

Saturday we took Elle to Paragraph Books on the island and to some other cute shops on SPI. We found some great toys for Elle. She is way in to matching things right now and we found Animal Bingo. There are cards with the animals on them and you match the game pieces to the cards. Elle was in hog heaven playing the matching game with the animals! She also talked Big Daddy into buying her a new bracelet. She really did talk him into it - or rather "signed" him into it. I have never seen so many "pleases" and "yes please" signed by this little lady! We also had a few photo shoots!

We had such so much fun with ViVi and Big Daddy. No one wanted the weekend to end!

17 Months

2010-08-23T12:41:00.003-05:00

I can't believe our little lady is 17 months old. Crazy that it has almost been a year and a half since we were blessed by our little angel. Since I haven't done an update in the last few months - here is what our little lady is up to...

- She is weighing in at 22 lbs and is 30 inches long

- She is in 12 month clothing and some 18 month clothing

- She is still a super picky eater and hasn't finished another jar of baby food since the first one she finished. We just haven't found that one thing she really really likes. Although, she will try anything at least once - which is good. She is still fed with the feeding tube.

- She is super active and goes goes goes all day long - with the exception of an hour long nap around noon.

- Her favorite thing to do is either read her books or play with her sign language flash cards.

- She is so super smart - she knows over 70 signs and will verbalize most of the words she signs.

- She loves to play the "where's game." She will sign "where" and we will ask her where something is (in sign language and saying it). We play it ALL DAY LONG. I run out of things I know the signs for! The easiest things to ask "where" are her body parts - she pretty much knows everything from her head to her toes.

- She recognizes same objects - she looks at a picture of a bear and will point to the bear toys in her room...pretty much anything she knows the sign for - she will put two and two together

- When she is playing with her sign language flash cards - she recognizes both the sign and the picture - so if the card is flipped over to show the sign you can ask her "where is the ____?" and she will find the flash card either way - with the picture facing up or with the sign facing up.

- we are working on recognizing the colors, letters and numbers....I know she will figure it out soon!

- She is pulling up on everything and will walk assisted all over the place. I heard a loud bang the other day when I was getting ready for church - I walked into the hallway and there was Elle - cruising up and down the hallway banging on the wall as she went up and down the hallway. We practice walking between two surfaces everyday - she can now take about 4 steps before falling. I know she will figure out this whole walking/balancing thing in the near future!

- She is starting to get a little attitude. If she is playing with something and you say it's time to put it up - she will hide the toy from you. She hides a lot of things - another one of her favorite games to play. If you take whatever it is away from her - be prepared for an all out hissy fit - complete with leg stomps and hands flailing around in the air. Most of the time she puts her hands on her cheeks and just cries the biggest alligator tears ever.

- She is still uber active with therapies and goes to physical therapy, occupational therapy, speech therapy as well as gym class and pretty soon we will be starting music class!

- She loves to sing and sign "Jesus Loves Me" and "The Itsy Bitsy Spider." We have crosses on some of the walls in our home and she will crawl up to them and point and sign "Jesus." Melts my heart every time.

She is such a fun little girl. I laugh all day long at what she does. Everyday she learns something new and it is so exciting for both of us. We are so blessed by our little Elle Belle!

Another week....another illness

2010-08-21T09:40:00.000-05:00

Well....Elle finally got over the puke monster and then was hit again with a nasty runny nose and cough. Last Tuesday (8/10/10) at gym class, one of the moms brought her daughter to class with a seriously runny nose. I really didn't think anything of it until Elle woke up on Wednesday with a runny nose. Ugh! Runny nose = puke in our house but thankfully we escaped Wednesday puke free. Wednesday night Elle woke us up with a terrible cough. I woke up first thing Thursday morning and made an appointment to see the pediatrician. I just love our pediatrician and her staff. Thankfully, she basically said that Elle had a summer cold and would be fine - just to watch her and make sure she didn't develop a fever. Come Saturday, Elle was feeling much better and we both needed to get out of the house so we went with Lee to his hunting camp.

Elle playing with the duck call - she's ready for hunting season

He needed to put up some game cameras and Elle and I wanted to see what The Moose Den was all about. We left early and got to his camp around 9:00am and were finished putting up the cameras by 11:30am. Elle's favorite part was getting to drive the mule! It made being outside in the scorching heat worth it!

We left Lee's camp around noon and headed over to my dad's camp 20 minutes away. Our intent was to go fishing but it was even too hot for the fish to even think about wanting to be caught! Elle was such a super trooper and hung out with Grampy in the shade while Lee and I tried to catch some fish. It was a pretty exciting day for Elle because she not only got to see cows up close and personal, but she also got to see horses and butterflies.

She had a butterfly on her shirt and when I pointed to the butterfly flying around she signed and said "butterfly" and then pointed to her shirt and at the butterfly flying around. She amazes me everyday with what a smart little girl she is! After fishing for a few hours we headed back to Lee's camp to drop off a 4 wheeler and so I could shoot a handgun for the first time. I'm not going to lie - I was scared out of my mind to shoot a gun. It's been 12 years since I even held a firearm so the fact that Lee was going to teach me how to shoot was pretty intimidating. Lee videoed me shooting the handgun and all I can say is that I was impressed that my arms didn't flap in the wind - thanks to lifting up a 20lb baby all day long!

It was a long day in the sun and wore us all out. Sunday morning we woke up and Elle had a terrible rash all over her that progressively got worse as the day went on. It was from her face all the way to her toes....worse than any other rash she has ever had. I was able to get in with our pediatrician on Monday and she said that the rash was most likely caused by a combination of the virus she had that gave her the runny nose and cough and possibly some plant she rubbed up against at the deer leases. Who knows. By Tuesday she was much better and we were able to resume our normal busy schedule.

Poor little baby - the pictures of her torso and legs are too gruesome to post

The rest of the week pretty much flew by. Animal Print Friday, Elle's normal sign language teacher returned after her summer break. It took Elle about 10 minutes to realize that Mrs. Katy was back to play with her. She was so funny when she put 2 and 2 together. She showed Mrs. Katy all her favorite games like taking all her shoes out of her armoire and then putting them all back in again and playing with her flash cards and reading her favorite book Brown Bear Brown Bear.

Animal Print Friday outfit - pink gingham with frogs all over it

The next few weeks are going to be super busy with appointments and other activities that are starting up. I signed Elle up for a music class that starts in September. I am so excited to see how she reacts to all the music. She is such a funny little girl. I asked Lee this morning if he ever thought that being a parent would be so much fun. Everyday she does something that makes us laugh - she is just such a fun little lady (even when she isn't feeling 100%)!

Rocky Mountain High....

2010-08-10T12:15:00.000-05:00

July 14-17 I escaped from the Houston humidity and went to Boulder, Colorado to visit one of my very best friends. Meghan and her boyfriend Tony graduated from The Culinary Institute of America in New York and decided to follow their hearts to the absolutely beautiful city of Boulder. I can't say that I blame them for choosing Boulder. It is beautiful! Mountain views, perfect weather and a community based around living a healthy life style. Walking and bike paths go throughout the whole city - so if you didn't want to drive anywhere - you could bike - safely. It was pretty awesome to see moms riding their bikes with kids in tow all over town. I can honestly say I came back inspired to live a healthier life style....it was absolutely fantastic!

I got in late Wednesday evening so we went back to her house (Tony was out of town) to enjoy some of Tony's beer...he's a brewer and brought home special beers that he had made. Let me just say that the moment I had that first beer I was trying to think of ways to get more of it back to Houston. Unfortunately for me, he works at a local brewery and they don't ship or distribute their beer....dang it....guess I'll have to go back....and take Lee and Elle with me.

View of the mountain as we were hiking

Thursday we went hiking in the morning and it was spectacular. The fact that Megs has mountains in her backyard where she can just take off and go hiking for the morning makes me want to be back there right now. I am definitely not in good shape so the trek up the mountain had my legs burning after just a few minutes. After our hike, Megs drove me around Boulder, we picked up some groceries and then we headed back to her house to get ready for the evening. In college, we became HUGE fans of a band named OAR. Just so happens that OAR was playing at Red Rocks on Thursday night and we just so happened to get tickets. We got to the theatre early to tailgate and it just proved to us how far we have come since college. We were surrounded by college students and while they were pulling out their Budweiser's, bags of chips and subway sandwiches, Megs and I were pulling out Orzo salad with dried cherries, kashi honey wheat crackers, and bottled beer (can't remember the name of it but it is definitely not your run of the mill beer...). Oh we have come so far....

Red Rocks was amazing and the concert was incredible too. Citizen Cope opened for them and were fantastic and then OAR came out and the place went crazy. It has been a long time since I went to a concert so to be in such an amazing place with such an amazing band and with one of my very dearest friends made the evening one I will never forget. Friday Megs had to attend a seminar in the morning so I walked the mile or so into town to a coffee shop and had coffee and breakfast. I could totally do that everyday! That afternoon after walking around the cutesy stores and stuff we went and saw Eclipse. Since we knew the boys would object if we dragged them to it, it was so much easier for both of us to go together. Awesome movie followed by an awesome dinner. Saturday morning we went to the local farmer's market and picked up fresh produce and a gift made by a hippie for Elle. I left Saturday afternoon and it was so sad leaving Megs. I usually tear up whenever I leave my friends and this time wasn't any different. I at least waited until I was inside the airport to tear up because Meghan would have laughed at me had she seen the few tears! It truly was an inspirational trip. Meghan is so talented in the kitchen - and she gave me a whole new perspective on feeding my family. We ate things like caprese salad and brushetta for meals and it was just as filling but 10x fresher and more delicious than the stuff I try to make for dinner at our house. The life style of Boulder just makes you want to be outside and be healthy! I wish that more of that mentality was here in Houston....and I also wish that it was about 10 degrees cooler and there weren't any mosquitoes! I absolutely can not wait to go back to Boulder - maybe next time I will be able to hike further up the side of the mountain!

Finishing the First Jar of Baby Food

2010-08-05T00:44:00.000-05:00

The Road to Recovery is filled with Turkey and Rice

2010-08-04T21:53:00.013-05:00

The puke monster finally left our house last Tuesday. 10 days of puking and the dreaded "d" word and countless bottles of Pedialyte but by last Tuesday Elle was pretty much back to her normal self (thank you Walgreens for having a sale on pedialyte the exact week that we went through too many bottles to count).

on the mend reading her books

One of the perks of Elle having the feeding tube was that we were able to keep the pedialyte going into her...even if it sometimes came out. We resumed our normal therapy schedule last Wednesday and Elle even had her first session of speech therapy. I'm excited to see how all her therapist work together - each one bringing her expertise into Elle's course of learning. Our goal in speech therapy is to get Elle to verbalize all the words she signs. There are a few words that she exclusively signs and does not voice at all. We've been with her occupational therapist for almost a year now and her physical therapist for a little less than a year so Elle is pretty comfortable with them. She's not too sure about her new speech therapist. It took her 30 minutes to warm up to her but our sessions are only 45 minutes! Hopefully as this becomes a part of our weekly routine, Elle will become more comfortable with her new friend and start to show her verbalizing skills!

Animal Print Friday - her outfit has little fish on it. During lunch, she realized that the fish on her outfit matched the fish on the Goldfish bag. She kept looking back and forth to her outfit to the bag and signing "same" and then looking at me for the confirmation. It was pretty funny to see the light bulb go off in her little head at the recognition of two like pictures.

By Saturday, Elle and I were ready to get out of the house and do something fun so Lee took us for a morning trip to Galveston. I forget that Galveston is only a little more than an hour away from our house. It was so nice to escape and just walk on the Strand for a little bit and go in the cute shops. We were only there for a few hours and then came back home - it was a much needed quick escape.

they have the EXACT same hair

Sunday afternoon my brother stopped by to visit with Elle. What a great uncle to sit and read Elle all of her books...twice...maybe even three times (and the girl has A LOT of books). Around 4pm, Elle started to pull on her button which is a tell tale sign that she is getting hungry. Lee sat her in his lap and started to feed her some baby food. Let me add that in the past Elle has at most eaten 10 tiny bites of baby food in one sitting. We've never even gotten close to finishing a jar of baby food and we've tried every single type of baby food out there. And yes, we've also tried home made. Elle's a smart little girl and associates the tube with filling her up. So needless to say, we were absolutely shocked when Elle sat in Lee's lap and proceeded to eat 3/4 of a jar of baby food in one sitting. We think she was showing off for Uncle Benny. Uncle Benny left around 5:00pm and after he left Lee and I decided to see if Elle would eat anymore baby food. We sat her in her chair and sure enough, the kid finished her first jar of baby food! Whoo hoo!!!! Turkey and rice seems to be a winner for Elle! I sure did stock up on turkey and rice baby food when I went grocery shopping for this week!

yummo! Turkey and Rice

We are praying that Elle will continue with the great eating and improve day by day so that one day in the near future, we won't have to depend on the feeding tube any longer. That will be a truly amazing day!!

The Puke Monster Is At Our House

2010-07-26T23:10:00.003-05:00

I got home last Saturday (7/17) from Colorado (post coming about the trip...waiting on pics to be developed from a throw away camera....who knew it now takes a week to get those things developed?!....anyways....) and when we woke up on Sunday morning to feed Elle, her feeding pump just decided to not work. Error message after error message (one of the few downfalls of depending on a machine to feed our child). We decided to do a gravity feed and hung the bag of formula up on the wall and let it drip down into Elle's stomach. Elle is very sensitive about the rate at which she is fed. Too fast and it is an instant puke. It took us a long time to find the perfect speed at which to feed her - slow enough so her stomach can handle everything but fast enough to where we don't feel like all we do is feed her all day long. We guessed we had the bag too high and Elle got the food too fast because she puked. Out the nose...out the mouth....grossness. We really didn't think anything of it and just continued gravity feeds for the rest of the day and she seemed totally fine. Monday...again....puke in the morning, fine with her afternoon feed and then the worst thing happened. We had an appointment with her ENT in the Medical Center. It was raining, terrible weather and I had to wake Elle up from her nap to get to the appointment. The drive down there was fine. Appointment went great - no tubes for Elle! Whoo hoo!! The drive back home...not so much. I decided to take the HOV lane since 290 traffic was backed up and it would have taken us 2 hours to get home. We jumped on the HOV (single lane for cars with more than 1 passenger - allows you to by-pass all the traffic sitting on the freeway - completely blocked in - once you're on - you can only get off at certain points every few miles) and started making our way home in the rain. Half-way home, Elle starts screaming and nothing would appease her...not the 20 books i passed back to her, not the 10 pacifiers I passed back to her - nothing. I can't pull over to console her because 1) it's raining and 2) I'm on the HOV and can't exit. As we were about to reach our exit, I heard the dreaded sound of gagging and then the worst thing happened - Elle began to puke and gag and choke while I was driving - on the HOV - with no way of me pulling over to help her. I was helpless...I couldn't do anything to help...I couldn't reach her....I couldn't slow down....I couldn't stop....and did I mention that it's raining...badly...very badly. After a few terrible minutes that seemed to drag on forever, I was able to get to the HOV exit and exit the freeway and pull into a parking lot and console my very terrified and frantic child. It was just awful. I haven't felt that helpless in a very long time. We finally made it home and got her cleaned up and down for a nap. Tuesday I was still thinking that her puking was from the fact that we were still having to do a gravity feed because our home health company delivered us a broken pump (totally different subject...one I'm still mad about). I took Elle to gym class as usual and then on to therapy where she puked not only all over me, but also all over one of the sofas in the waiting room at the therapy center. I'm still blaming the puking on the gravity feeds so she makes it through physical therapy and then occupational therapy but once we get home the puking starts again...along with the dreaded diarrhea. Great....time to start the pedialyte. Wednesday was the same with puking rounds followed by the dreaded "d" stuff. Poor little girl. We were able to get in with a pediatrician but not our usual one (ours is out of town for the month) and she told us just to continue with the pedialyte until we start to see signs of improvement. We are now on day 10 of the puke fests and thankfully they have diminished to just 1 or 2 a day. We were finally delivered a working pump (after 3 failed attempts...as in we were brought 2 pumps that didn't work and they lost my order for a new pump...one of the nurses at our pedi's office called our home health company and laid into them...we had a working pump by that afternoon). I just hate this for Elle. She is tiny already but has lost weight due to the fact that she is getting a majority pedialyte and only a few calories a day. Her normal feed is 7.5 ounces of pediasure every 5 hours 4x a day. Today we were able to bump up her pedialyte to 5 ounces every 3 hours and towards the end of the day we started to add in an ounce of pediasure with the feeds. We've called the cardiologist and they said they would be doing the same thing for her in the hospital that we are doing here at home so just to continue on with the fluids and watch for signs of dehydration. Last Sunday afternoon Lee surprised me with a new washer and dryer. I think we have already gotten our money's worth out of it. No less than 6 to 8 loads a day of sheets and towels and clothes...all of which has been puked on....or even worse....the dreaded "d" word....10 days of 6 to 8 loads a day...oh my. Even as I type this, Elle puked again in our bed...after our sheets had just been changed. So now, even though I was completely caught up on all the puke washing...I now have another set of sheets, our mattress cover and a few pillow cases that were the latest victims of the puke monster. Oh please Lord, let this end peacefully and go away as suddenly as it came! Please give Elle a break from the constant puking and give her strength where she has lost it. Please comfort and console her in a way that only YOU can. Please just give our little baby peace and comfort as she fights this terrible virus. And please, Lord, give Lee and I strength to get her through this and strength to console her and comfort her as she cries out in discomfort. Oh please, please just help Elle to heal!

The Circus Came to Town

2010-07-25T13:51:00.003-05:00

Several weeks ago (yes, I am THAT far behind) Lee's cousin had a suite at Reliant Stadium for the circus. We were lucky enough to join her and her family and their friends for a night of elephants, tigers, high flying acrobats and a very entertaining ring master! We got there early to meet all the animals and the entertainers. Elle did great seeing the animals. She would sign "elephant" or "zebra" or "horse" or "tiger" as we were looking at each one. When we got there, I put her hearing aids in and after about 30 minutes, she pulled each of them out and handed them to me. It's was just too loud for her little ears with those aids in!

Looking at the zebras and tigers and signing "elephant"

The beginning of the show was uber entertaining (for me) but Elle got antsy after about 30 minutes. Thankfully we were in the suite so Elle was able to crawl around on the floor and practice her assisted walking with ViVi's help. After intermission the animals came out and Elle sat on ViVi's lap and stared in amazement at the tigers and elephants.

It was so much fun and we all had such a good time. It was Elle's first time to see such big animals and she was just amazed. Thank you Rodgers family for such an amazing night!