Almost Famous

Our interview with Channel 2 aired today at 5:00pm!! We had the actual interview yesterday and it went really well. It was so fun to have Elle out and among our friends. We only took her because it was only going to be Mel and Austan and Sean and Angie. She did so good and was a perfect little lady during the interview. Although, she did try to eat the camera once or twice and was an absolute wiggle worm while we were being interviewed...but considering that she is exactly 7 weeks post open heart surgery - she did great! You can see our full interview at:

www.click2houston.com

About half way down the page under "Local Headlines" there is the title that reads "Heart Defects that Touch Brothers' Lives." Click on that and you can see our actual interview. While you are surfing the web - go check out the Wee Dream Blog. We are full to the brim with golfers!! This is amazing and we are so thankful for each and every person who has said prayers for our family, donated to the foundation, bought a raffle ticket, bought a bracelet, are coming to dinner, participating in any way for the Wee Dream Foundation. Thank you thank you thank you!!

You've Heard of the Bubble Boy

And here is the Bubble Belle!

Yep - that's Elle Belle underneath all that plastic. It's a rain cover for her stroller but also works as a germ shield! We spent practically all day at the hospital yesterday and with the outbreak of swine flu and seasonal flu - it is better to be safe than sorry. I don't want strangers breathing on her or touching her. I am always so surprised by the number of people that reach their hands in to touch her - even though she is usually holding or chewing on her tiny hands sign that says "please wash your hands before touching mine." It drives me crazy! When I was pregnant - it was perfect strangers coming up to rub my belly and now it's perfect strangers trying to play cute with my child!! I'm perfectly fine with smiles from afar but reach your hand into her stroller and you might come out with a nub!

We had 3 wonderful doctor visits yesterday. The first was with our fabulous audiologist Dr. E - I just love her! If I didn't have 2 more appointments follow our appointment with her (and if she didn't have an extremely busy schedule) I could probably stay and chit chat with her all day. Elle loves her too so that makes these visits something to look forward to. She adjusted the volume in Elle's hearing aids and put in her new ear molds. Elle really didn't seem to mind one bit and as we were leaving and getting on the elevator, she pulled the string on one of her toys that plays music and stared up at it in amazement - the same way she did the first time she heard music with her hearing aids in. There were 2 other people in the elevator and both were smiling and laughing at her wide eyed stare at the toy. I think they were just as excited and happy as she was! Our next appointment was with the Genetics doctor and Lee met us for this one. The last time we saw Dr. L was in the NICU - 6 months ago. I think she was pretty impressed with our crazy kid! Since Elle is now officially a mover and a shaker - she was going a mile a minute on the exam table. Lee was standing at one end of the table, Dr. L was at the side and then walls were on the other side and at the head of the table. Elle was a baby ping pong ball - rolling from Lee to Dr. L to the wall and back to Dr. L and then back to the wall and then to Lee...for an hour! She never stopped! At some point - she discovered the paper on the exam table - grabbed hold - and rolled - ripping the paper. She did that a few times until there really wasn't any paper left. At that point she started grabbing whatever she could to put into her mouth. Here we are, trying to have a serious conversation about Elle's issues and we can't stop laughing because of her antics! I don't think the smile left any of our faces (including the doctor's) during our meeting with her. The doctor didn't give us any news that Lee and I hadn't already read about in CHARGE Syndrome literature. Elle has now been officially diagnosed as having CHARGE syndrome - where as before all her paper work said "possible CHARGE syndrome." There's no "possible" about it now - she's official. This is actually a good thing because now that she has an official diagnosis, it means she can now get support/help from Texas Deaf/Blind outreach and various other entities. One of the things to watch out for in CHARGE kids is that they have a very high pain tolerance. We've already kind of noticed that in Elle. She doesn't cry when Lee or I accidentally bump her head on her car seat handle or when the dogs tails smack her in the face - she actually laughs. I was emailing some of my girl friends later in the day and i said " lee and I are going to have that kid that says "hey guys, watch this!" For some reason, that phrase sounds oddly familiar because I distinctly (or not so distinctly) remember saying it a few times right before sliding down the staircase in the KA house in a trashcan lid (and at our own house in laundry hampers) or using cookie sheets to slide down the massive hill we had in our backyard in one of the houses I lived in in college. White house girls - that little memory is for you! Dr. L also gave Lee and I the talk regarding future children. There is a 2-3% chance our next child with also have CHARGE. Just like the birth rate of kids with this syndrome is 1 in 10,000 - there will always be that risk. Unfortunately, there is no way to determine if our next child with have the syndrome since both Lee and I already tested fine. There may be a possibility of mosaicism in either Lee or myself. Mosaicism is a condition in which cells within the same person have a different genetic makeup. This condition can affect any type of cell, including blood cells, egg and sperm cells, and skin cells. If I do get pregnant again, we will do a lot more testing to determine if the baby with have CHARGE. Although, it's not going to really matter...just like it didn't matter with Elle. We go back to see Dr. L when Elle is about a year old. She wants to see where she is developmentally and track her progress. Our last appointment was an impromptu appointment with our favorite pedi surgery nurse, Kathy. It's time for Elle to get a new button (in her stomach for her feeds) and since we were at the hospital already, Kathy worked us in. Unfortunately, the button that was sent up to her was the wrong kind - so we go back next week to have it replaced.

Waiting for her nurse Kathy - about to use the wall as a starting point for some major rolling across the table

By the time we finally made it home, I was exhausted but Elle was totally refreshed because she slept in the car ride home. Since she had been cooped up for part of the day in her carrier, I put her on her stomach to work on tummy time and she shocked me by putting weight on her arms! It was the first time I have seen her do that! She also used her head, arms, and feet and scooted her way across the blanket I had her on. It was pretty funny to watch - but she was only doing it to get to the remote. I definitely would not call what she did "crawling" but I know that when the time is right - she is going to be one active little girl (she already is!).

Our interview with Channel 2 news is in the morning. I am so nervous about it. I would not be one bit surprised if my Texassippian accent comes out. Living in Mississippi for 5 years, I somehow acquired a very Southern accent that only comes out when I'm really nervous (and maybe after a weekend with my friends from the deep south!)

Only a few more days until the Wee Dream golf tournament! Lee and I are actually going to play in it - it has been 8 month since I last picked up my clubs. I stopped playing when I was 8 months pregnant. Maybe I should get out there and practice a little bit! Thank you so much to everyone that has shown their support for this amazing foundation. I received an email today that put both my dad and myself in tears. The overwhelming support is truly, TRULY amazing. Thank you all so much!!

Watch Out World

Watch Out World - Elle Belle is on the MOVE! I put Elle down on her pink play mat this afternoon while I went into the kitchen to clean out her feeding pump and get her milk ready. Our house is open concept - so our kitchen opens to our den where Elle was. I turned my back for literally 2 minutes to talk to my mom on the phone and when I turned back around - this is what I found!

Elle Belle rolled off the mat and probably 4 feet until she came to rest on the sofa. Her little legs were propped up against the sofa and she had a huge smile on her face - she was so proud of herself for her big move! That teaches me to turn my back on her ever again!

We've had a really great weekend. Even though our interview with Channel 2 News got postponed, our Friday was definitely exciting. Of course Elle woke up bright and early. I was really hoping and praying she would fall back asleep but that never happened (woke up at 5am and stayed awake ALL DAY LONG)! I have discovered some truths about myself now that I have been a mom for a little over 7 months. The one thing I have discovered is that I can't sleep for just an hour. Elle gets one late night feeding - generally somewhere between 11pm and 1am. If the feeding is supposed to be around 1am -i generally try to stay awake - but sometime I tell myself "it's only 11:30 - I can sleep for about an hour and then wake up and feed her." Yeah - I don't think I have actually ever been able to sleep for just an hour and then wake back up to feed her. Oh well - it seems that I automatically wake up at 3am anyways!

Our little birdie

Animal Print Friday - we had appointments with both the cardiologist and gastro doctor. Our cardiologist took an x-ray and then came in to deliver the good news - everything looks great - we don't have to go back until she is a year old! He also said that since her scar looks pretty good - we no longer have to scoop her up - thank goodness because she is getting too big to scoop up and not just pick her up under her arms!! And...drum roll please...we are officially out of quarantine! Yeah!! I write that we are out of quarantine with a bit of hesitation because since it is flu season - and Elle is a high risk kiddo - we won't be going out in public all too often....and we are still being very selective as to who can be around her. Our appointment with the gastro doctor went well too. I'm afraid that my milk isn't going to keep up with Elle's demands so we are going to start supplementing and trying out different types of formula to add to her milk. We are also lining up another swallow study. I just want to be 100% sure that the breathing tube didn't damage anything in her throat. She still isn't taking a bottle like she did before surgery. Pre surgery she would take anywhere from 20 - 30 cc by bottle. Now - she barely takes 10cc. She isn't interested in breast feeding either. We go back to see her in a few more weeks just to make sure Elle is on track with her feeding. She also wrote the orders to start back up with PT and OT. Yeah for progress!

Elle covered up and ready for her walk on Friday morning

Elle and Lee playing on Friday evening

Saturday morning, Lee woke up super early to go hunting. I had to go and drop some prescriptions off at the pharmacy and on the way back to our house, I noticed a huge sign for a community garage sale in the neighborhood across the street from ours. So - Elle's first foray into the public post surgery were garage sales!! I had the hour to kill before her meds were ready, so we visited a few. I picked up a ton of 18 month clothes - all in pretty good shape for $10.00! Saturday afternoon I dropped Elle off with Mark and Vickie and I headed out to do some shopping. I have held out long enough on buying clothes to fit my current body type. After watching a few too many What Not to Wear marathons and hearing Stacy London and Clinton Kelly say "dress your current figure - not your intended figure" - I bit the bullet and took some of my ones money to the mall. Thankfully, Ann Taylor Loft was having a huge sale and I found some really good deals. It was kind of nice being out - alone. The drive to the mall was so peaceful. Elle has really started to not like riding in the car - at least not when she is the only one in the back seat. Our drives anywhere generally consist of her screaming and me making a few trips to parking lots to pull over and comfort her before getting back on the road. I think it might be because I take her hearing aids out when I put her in the car since she usually pulls them out to start sucking on them. Plus she can't really see me - so the combo of not seeing me and not being able to hear puts her into a mini panic. She hates being alone now so I can only pray that this too shall pass.

My garage sale finds

This morning I was tempted to take Elle to Target to pick up some necessities. I thought better of it and decided to go on a walk instead. Elle had a little photo shoot before our walk...

After Lee got home from the lease, I headed out to do some errands. I picked up a Jenny Jump Up while I was out. Jury is still out on if Elle likes it or not. She looks so tiny in it!

This week we have a super busy week! Tomorrow is a big day at the hospital - filled with appointments. One of the appointments is with the Geneticists. Both Lee and I are anxious to hear what they have to say. Whatever they say, we both know our little Elle is truly a blessing and we are so incredibly lucky to have her in our lives!

Only 1 more week until the Wee Dream Golf Tournament. Thank you sooo much to everyone who has donated to the foundation! Monday, November 16 is going to be one exciting day!!!

Change of Plans

Due to the horrible events of this afternoon at Fort Hood, our interview with Channel 2 News has been postponed. All of the reporters and crews at in Fort Hood. Please pray for all of those soldiers and their families at Fort Hood and those others that are affected. I'm just in shock about the events of this afternoon. What a tragedy.

Progress

This morning I put Elle down on her pink mat to play. After a few minutes I heard her start to whine so I went into the den to see what she was up to and I found her on her tummy. Technically, she isn't supposed to be on her tummy just yet but the doctors told us if she rolled over on to her stomach and wasn't screaming out in pain - she was fine. So I let her stay on her tummy for a little bit and enticed her with the camera. She was doing so good! She even reached out for the camera with both hands and was lifting her head up! I just sat there with tears streaming down my face because 6 weeks ago she had open heart surgery and prior to surgery - she couldn't/wouldn't do what she did this morning.

Everyday she gets a little stronger - I know before too long she is going to be sitting up on her own and doing awesome on tummy time. We will hopefully get the ok from the doctor on Friday to start all her therapies back up. Yeah for progress!!!

Big Girl Walk

It's just too pretty outside not to take advantage of this wonderful weather. After Elle was finished eating this morning - I decided to load her up and go for a walk. This wasn't just any walk - I decided to let her face forward in her stroller. So the four of us headed out for our walk - Reggie, Duchesse, Elle and myself. I think I was the only one that didn't enjoy the walk! Reggie and Duchesse do really well walking beside me (thanks to all the hours Lee spent training them) so that wasn't the issue. Elle had her toys to keep to occupied and she had her legs propped up on the drink holder - so she was perfectly content. I just hated it that I couldn't see Elle's adorable little face looking up at me! Not to mention - I kept having to readjust the shade to keep the sun off of her. I don't think I'm ready for her to be looking forward just yet! Plus - she's pretty little and I had the arm straps as tight as they would go and she still managed to wiggle her way out of them a few times. We're still working on head control and sitting up - she isn't quite there yet so she just kind of lounged in the stroller more than sat up like a big girl.

We have a pretty busy month in November. This week we have appointments with the pediatrician for the RSV shot, a follow up appointment with her cardiologist, and a follow up appointment with her gastro doctor. Not to mention, on Friday we have an interview with Channel 2 News! How exciting is that?! They are doing a human interest piece on the Wee Dream Foundation and are going to interview us, Austan and Mel and Sean and Angie (the founders of the Wee Dream Foundation). We will officially be 6 weeks post surgery on Thursday so I think Lee and I might take Elle to the interview. It will be her first time out in public so needless to say I'm already freaking out about it. The interview will be at Longwood Golf Club which is where the golf tournament will be on November 16. I'm trying to decide on outfits for our little princess and I think I have it narrowed down to two - but I have a tendency to change my mind a lot so who knows! It will be animal print Friday so I'm trying to dress her up in animal prints. We'll see though! It may be a toned down animal print...no leopard ears or anything like that!

One very happy little girl!

one very silly little girl!

Dear God, please let me be a Phi Mu when I'm older

Happy Halloween!

So y'all know I'm pretty obsessed with playing dress up with Elle - well today I might have gone a little overboard...but I had an excuse...it's Halloween!

(her little Halloween outfit is what she wore for a part of the day yesterday - i love it!)

Outfit # 1 was her lady bug outfit - but I didn't get any pictures of that one (oops)

Outfit # 2 - decked out in red, white and blue to support our Ole Miss Rebs (too bad Rebel bows can't help those Rebs win!)

Outfit # 3 - our little bumble bee! It was a little too hot for her to wear this one for very long. Lee's grandmother got us this outfit before I was even pregnant. It was one of my Christmas gifts - maybe wishful thinking for a future great grand baby! Lee's nickname is Lee the Bee - so this was a very fitting gift for our future little bumble bee!

Outfit # 4 - Out little ghost - She had on a ghost t-shirt and her little pants had a little spider on it - but alas - no picture!

Outfit # 5 - Our little leopard! This isn't the same outfit as animal print Friday - it's WAY better because it has a tutu attached!

Outfit # 6 - our little eater had on a cute "I love candy" shirt but that was quickly covered in prunes

Outfit # 7 - pjs!

We had a wonderful evening tonight! My parents, Lee's parents and Lee's brother, Jake, came over and we had a little Halloween dinner. Elle Belle was soo good! She loved all the attention and loving that she got! It was a perfect 1st Halloween!! I hope everyone had a wonderful and safe evening (and if you're like me...the no more candy diet starts tomorrow!)