Thank you Lord for TCH

I know I have been remiss in posting as frequently as I should...or even as frequently as I would like. We've have been busy bees around here. On top of Elle's 5 therapy sessions a week that we normally have, I also signed us up for a mommy and me gym class, story time and ASL (American Sign Language) story time. Then add in a few doctor's appointments here and there and we are blowin' and goin' non stop. Whew!! There usually isn't one day that we don't have something scheduled! Generally by the time Lee gets home, we eat dinner, go on a bike ride and then it's almost bed time!

Elle out on a bike ride

Since we are at the outpatient TCH so much - we have become good friends with all the nurses and therapists and staff members. Elle and I love them all so much. Today it was my turn to be a patient at TCH. Funny that I as an adult had an appointment at Texas Children's. My back has been killing me more than usual for the past month and I thought a few visits to the chiropractor would help. They have seemed to help a bit, but I still can't sleep more than 2 or 3 hours before I wake up and have to stretch and walk around in order for the pain to subside enough to go back to sleep. After talking it over with Elle's PT, I decided to see a Sports Medicine doctor. I played golf in college and continue to play so a bad back is something I've dealt with for a long time...but now it's getting out of control. So...I saw the Sport Medicine doctor at TCH today. While I was being stretched and evaluated, Elle was playing with all her favorite nurses. As soon as I was called to the back, Mrs. Wendy, Elle's favorite nurse, said "can we watch her?" Of course I said yes! My room was right next to the nurses station and I could hear Elle squealing with delight while the nurses all played with her and I could hear their laughter after asking her to sign "octopus" or "frog" or "later." I could hear the laughter and sounds of smiles in their voices as other doctors and therapists stopped by to say hi to "Miss Elle." I'm sure Elle was loving every minute of the attention!

Elle playing at the nurses station

Three hours later, with a sufficiently sore back but better understanding of my problems and hopefully how to fix them, we were leaving TCH. Elle did not want to leave that nurses station! I am so thankful for TCH and the staff that we see almost everyday. Those doctors and nurses and therapists are wonderful. Words can't even describe how happy I was today - my heart was filled with joy while I was in that room hearing all the love that every single one of those employees have for Elle. I was all smiles as therapists and admin were coming up to me as we were leaving saying "oh I just love Miss Elle! We read a book together today" or "I love you my little Ellie - see you tomorrow!" Elle was blowing kisses to everyone as we were walking out the door. She is such a little ham - a very lucky little ham that is loved by so many people!

This past Friday, Mrs. Wendy gave Elle a pair of super star sunglasses. They matched her pink frog dress (ode to Animal Print Friday!). Elle loved them! She even napped in them...

What a little rock star!!

Memorial Day Weekend more ramblings...

Time seems to fly by more quickly now that I am at home. I often look at the clock and realize that Lee will be home in an hour...where do the days go? For not having any plans for the Memorial Day weekend...we ended up having a fabulous few days. It's hard to make plans with Elle because she has a way of changing everything. She has still been throwing up and has had a runny nose - so we decided not to commit to anything just in case the fever and virus she had a few weeks ago came back. Thankfully, the puking rallies have become fewer and farther between...but in the last few days Elle has puked in a Mattress Firm and in the mixed grill of a very nice country club!

We started off our Memorial Day weekend on Friday with Elle's red, white and blue animal print Friday outfit! I LOVE this outfit - thank you Mud Pie for FINALLY making clothes for babies older than 6 months old...and thank you TCH for carrying cute clothes in the gift shops! Saturday afternoon we headed to College Station, TX to spend some time with my parents, play some golf and get in some pool time. It was Elle's first time on the driving range and she loved it! I think she actually like driving the golf cart the best.

After hitting golf balls on the driving range, we spent the evening at the pool. Unfortunately we didn't bring Lee's good camera so all pics from the weekend were from our phones!

sunblock hair! love it!

We took Elle out on the golf course on Sunday morning for the first time. I loved that she watched us play with so much amazement. She laughed every time one of us would swing - I hope she's a golfer! Sunday afternoon we went to Lee's granddad's 80th birthday party! We had so much fun (and of course - forgot the camera!) and Elle loved seeing all her cousins and second cousins and family friends. She loves Lee's granddad - and we've heard her say (more than once) "granddaddy." One of Lee's cousins took some family pictures - I can't wait to see how they turned out. Monday we didn't end up doing much of anything. We let Elle play in her new baby pool in our backyard and then she took a 4 hour nap and we ended the weekend with dinner at Mark and Vickie's. It was a fabulous, restful weekend - I wish we had more 3 day weekends!

In other ramblings, now that I am home, I have become obsessed with "projects." Problem is...I haven't finished one yet! My dad gave me an ultimatum this past weekend. Our dining room chairs are in pretty bad shape. Reggie (our black lab) had an obsession with ruining antiques. He didn't touch anything else in the house except for the dining room table chairs and a few other pieces that had to be thrown out because they were demolished. Since our dining room is pretty small, we have a small Duncan Phyfe table and chairs. One of my projects it to make slip covers for the chairs to cover up the half eaten spindles. The ultimatum my dad gave me was that the covers have to made by July 4 or else he is throwing the chairs out...I can't blame him because they have been sitting in our garage since Elle's birthday party. He and Lee cleaned out the garage on Saturday morning before we left for College Station and my chairs were a part of the clean up!

I found these slip covers (the picture is from the movie Something's Got to Give) - so I am going to put my sewing skills to the test and try to make something similar. This is on top of a few other projects I have in the works. Lee is getting pretty frustrated with all my projects - one day...hopefully one day soon...they will all be complete!

Up Up Up

In the last few days, Elle has not only learned the word "up" but she has also learned the word "uh oh." I hear both words no less than 200x a day and I love it! I usually ask her to repeat whatever it was she just said because I get such a kick out of it!

This week has been pretty tough. After our appointment on Monday with our Genetics doctor, Elle must have picked something up from the hospital because she has been sick ever since. She was ok on Tuesday but woke up Wednesday with a runny nose and fever. Usually I dread a runny nose because not only is Elle miserable, but she is incredibly sensitive about her nose because of her 3 nose surgeries. The only way I can get anything near her nose is to make a game out of it...and even then...it's hit or miss on cleaning her up. A runny nose in our house almost always equals puking rally too. Since she is tube fed, we have to be uber careful when her nose starts to run - we have to slow the feed down so that it takes almost 2 hours for it to run. Ugh! Today has been the first day we haven't had major puking rallies...whoo hoo for progress! This morning the pedi told me that the virus Elle has will probably take 4 - 5 days to run it's course. 3 days down...2 more to go!!

Elle watching her sign language dvd in her pink chair...in her elephant shirt...ode to animal print friday!

Despite her being sick, she has still kept me on my toes this week. We finally installed the child locks on our kitchen cabinets and when she realized that this morning, there was a lot of screaming going on in our house! We left 2 cabinets open for her to pull stuff out of and that seemed to appease her for the rest of the afternoon. I'm praying she is on the road to recovery. I hate her not being 100%!

A Meeting with Genetics

We are so lucky to live in Houston and so close to Texas Children's Hospital. When Elle was diagnosed with CHARGE Syndrome we were blessed to meet one of the fabulous doctors that leads research on the syndrome - and thankfully, she is a Texas Children's doctor. I believe there are 2 doctors in the United States that do extensive research on CHARGE Syndrome and Dr. L is one of them. We are so blessed! Monday we had an appointment with Dr. L so she could see Elle's progress. As soon as Dr. L walked in to the room, Miss Elle hammed it up. She was crawling all around the room, pulling herself up on Dr. L's skirt and trying talking the whole time. Dr. L was so impressed by all Elle's activity. I was telling her about sign language and how Elle has really excelled with it. She asked to see some of Elle's signs so I sat Elle on my lap and we went through some of her signs. Elle had done around 10 signs when I looked over at Dr. L and saw her wiping tears away. She was laughing and clapping and was so impressed by our little Elle. I absolutely love that she is as thrilled with Elle's progress as we are. Elle is like a little sponge. She has sign language every Friday and seems to learn something new every week. I get so tickled spending the days with her - I think I laugh most of the day at her and her little expressions and things she does. Everything we do - she mimics. This weekend, I had a sneezing fit and I looked up to see Elle mimicking me. Oh My - she is one very smart little girl!

More Vacation Pics

I didn't edit any of these...but I think they are still pretty cute!

Mother's Day Weekend

I wanted to wait to write about Mother's Day until after today. Elle had OT and PT today for the first time in a week and since our PT reads the blog...I wanted to wait until after we saw her today to say that Elle is now officially crawling! Whoo hoo!! It started while we were on vacation and now the kid is blowing and going WAY more than I ever thought possible! The day before Mother's Day was when I caught her in action crawling through the kitchen. I sat Elle down on the floor today in the gym and said "Michelle, Elle has a trick to show you." And off she went...crawling across the gym towards Michelle. It is so awesome to see her progress!

This past Saturday evening, we took Elle over to see Witt for the first time in over a year. It was absolutely the best Mother's Day gift ever to see Witt and Elle interact...and for Mark and Vickie to have their grandbabies together!

Last Mother's Day we were still in the hospital with Elle. This year, it was so nice to wake up and be in our own home - all three of us. Little did we know last year how much our lives would change over the course of the year. Everyday has been an absolute blessing and I am so honored to be Elle's momma! We spent the morning in church with Lee's family and then spent the afternoon with my family in College Station. I couldn't have asked for a better mother's day!

I am so blessed to have so many wonderful Christian women in my life. My own mom is absolutely incredible and the best mom any girl could ask for. She is the kindest most thoughtful person I know. She makes every birthday and holiday seem even more magical than the year before and knows how to truly make a person feel special. She takes after her mom in so many ways and I am so blessed to have her in my daily life. I don't know what we would have done if she hadn't sacrificed for us and took care of Elle while I was working. I only hope that I can be the kind of mom to Elle that my mother has been to me. I have lost both of my grandmothers but I take so much comfort in knowing that both of them are watching over us from Heaven. Lee's mom and grandmothers and all his aunts have been apart of my life since November of 2003. I am so truly blessed to have a mother in law that I love. We talk on pretty much a daily basis and we are so lucky to have both grandmother's so close and a part of Elle's daily life. I love her sense of fashion and her designer's eye. She is tasteful and elegant and has the biggest heart. Lee's grandmothers are the same way. As the matriarch of a wonderful family, Meme is the essence of a strong Christian woman. I was telling Lee this weekend after talking to Meme on the phone that I love it that when meme says "I love you" she means it and you know it. Lee's other grandmother, Eleanor, is the cutest lady you will ever meet. She is soft spoken and even though her memory isn't that great, she is such a joy to be around. Her face lights up as soon as she sees Elle...which of course makes us thrilled to see her interacting so well. Lee and I are so blessed by our incredible families and especially our amazing moms and grandmothers.

Now that Mother's Day is over I will post some more vacay pics. We gave some of them out as presents to our mommas this past weekend!

My New Obsession

Thanks to my friend Erin I have a new obsession...

http://www.allthingsthrifty.com/

http://www.fleamarkettrixie.com/

I just had to share...