Hello Again!

Well, it's been a while since we've been here.  We've been a little busy with some of this and a little of that.  You know, starting school, having a new baby, the usual around here.  :)

Slowly things are beginning to fall into a bit of a routine and I hope to be able to get back to blogging on a somewhat regular basis again.  I hope to post updates soon on all of the kids, including our newest!

But for now, I wanted to let you know (if you haven't heard already) that Rebekah is going back to MUSC for a heart catheterization in a week.  We will be heading down on Thursday and have to check in at the hospital on Friday morning.  This is supposed to be a "routine" catheterization, but it still comes with it's risks.  We would certainly appreciate your prayers!

 A doctor in training!

Hmmm....maybe not?!

Because Rebekah's heart has several artificial parts (the conduits that were placed last year in December), there is a high risk of scar tissue building up in and around these parts. Rebekah's surgeon wants to make sure that the scar tissue is ballooned or stented to keep the conduits from closing up.  Also, it is likely that Dr. Baker will coil off some of Rebekah's extra collaterals during the cath.

Right now we are planning on Rebekah staying overnight in the hospital on Friday night.  Usually if there is any work done in the cath lab (besides just taking measurements and pictures), the doctors like for the patient to spend one night for observation just to make sure that things are fine.

For the first time ever the boys will be spending the time we are gone with friends.  The two oldest boys will be with one family and the younger two with another family.  They are very excited about their "sleep overs!"  We will be taking the baby with us.  Please pray for safety for the boys while we are away.

Our cute little pumpkin!

Thank you all for your prayers for our family.  We will be updating from the hospital with Rebekah's progress in the cath lab.

Nancy

Rebekah's Birthday Adventure!

Rebekah is officially three now, and we had such a fun time spoiling her for her birthday!  :)  She had a very girly day and seemed to thoroughly enjoy herself!

Rebekah's day started with a birthday party with Ms. Katherine!  Yes, she literally had a cupcake for breakfast.  :)  Ms. Katherine is Rebekah's fantastic Early Interventionist, and we love her dearly!  She also brought Rebekah two books that have been read multiple times already.

After Ms. Katherine left, the boys and I headed out with Rebekah for her pampering.  First up was a trip to the nail spa to have her nails painted.  She sat so still and patiently watched as her fingernails and toenails were "pinked."  I wasn't sure if she would sit still long enough for the polish to dry, but she perched in her little chair like she had done this a million times before!

As an added birthday "bonus," the sweet girl who did Rebekah's nails hand painted a flower on each of Rebekah's big toes.  It was so cute!  Any time the boys got too close to Rebekah's chair, she said, "Stop! Move back!"  I think she was afraid they were going to get in on the action.  If she only knew how much they DIDN'T want to be a part of the nail painting!  :)

After Rebekah had beautiful nails, our next stop was Claire's to get earrings.  Originally Rebekah decided she wanted pink earrings, but when she actually looked at the earrings, so decided on a light purple flower.  When we looked at the earring in relation to Boo's ears, we decided that they were going to be too large.  So we settled for a small pair of cubic zirconia studs that are "sparkly."  Rebekah was a champ and cried for about 10 seconds and then she was over it.  Probably the tylenol and lidocaine cream on her ears had something to do with it, too!

Rebekah sat so still while the girl marked out the perfect location on each of her ears.  She even got to hold a special earring bear while she was getting her ears pierced.  As soon as they held up a mirror for her to look at her earrings, she stopped crying and was all smiles!

And here is the end result.....a very excited little girl posing for her pictures!  It has been a while since Rebekah has had professional pictures taken, and she posed like a model.  It is so much fun to have a girl! :)

I can't believe how much Rebekah's hair has grown since it was cut in December.  It is very fine and wavy/curly.  It is hard to find a style that keeps it out of her face and stays in place.  I love that it is curly, though.  It's so fun!

This is Rebekah's "monkey face."  She was being so silly during pictures, and the photographer snapped this one.  I think it's perfectly cute and so "Rebekah!"

I love Rebekah's expression in this picture and that her dimples show so well.  Rebekah has grown so much this year - physically, emotionally and meeting milestones in record time.  I just cannot express how thankful we are that Rebekah is doing so well.  We love seeing the world through Rebekah's eyes!  Thank you for all of the birthday wishes for Rebekah.  I think it was a wonderful day!

Nancy

Happy, Happy Birthday, Rebekah!!

It is almost unbelievable to think that three years ago tonight we were sitting in a hospital room in Charleston anxiously waiting for the appearance of our sweet little Rebekah.  So much has happened in the last three years, and there were certainly times when we wondered if we would get to celebrate Rebekah's third birthday with her.  But God has blessed us beyond measure and has given us so much more time with Rebekah than we could have imagined a year ago.

Even though Rebekah was a little peanut at birth, she proved over and over that she was a fighter.  She never gave up, despite all the challenges and setbacks.  Rebekah underwent her first open heart surgery at just one week old.  She recovered amazingly well from that, and three weeks later we finally got to take our sweet little girl home!

When I look back at pictures from Rebekah's first few weeks, it amazes me that she is doing so well today! I remember how hard it was to find the baby in the midst of all the tubes, wires and medical accessories that she had. Today she still has a lot of accessories - just of a different, decidedly girly, nature!

Rebekah's first year was filled with ups and downs. She was in and out of the hospital with GI issues and respiratory infections. We decided to go ahead with a g-tube surgery and nissen fundoplication. Rebekah also started physical therapy and occupational therapy to help her catch up with her development.

By the end of Rebekah's first year, she was much more stable, medically speaking.  She began crawling just before her first birthday and was walking around 20 months.  We were so excited to see those major milestones!

Even from the beginning, Rebekah has loved her bows and bracelets.  :)

At sixteen months, Rebekah had her second open heart surgery.  She had a few ups and downs during recovery, but was back home in two weeks.  This surgery repaired her Truncus Arteriosus, with a few minor adjustments for Rebekah's unique anatomy.

Rebekah sailed through her second birthday!  She grew to love the water and swimming pool and began aquatic therapy to strengthen her muscles and build endurance.

Rebekah required oxygen for most of her second year.  She was treated for pulmonary hypertension as well as low oxygen saturations.  That still didn't stop Rebekah, though!  She just pulled her tubing along behind her as she went about being a normal two-year-old.  In addition to the physical and aquatic therapy, Rebekah also began speech therapy for a variety of speech issues.

Rebekah had her third open heart surgery at two and a half.  This was a Truncus revision, as well as an attempt to provide some use of her right lung.  Rebekah's surgeon was very honest with us when he admitted that he didn't know if the surgery would produce any of the desired results, but it was the last option we had to try.  We honestly didn't know going into the surgery if Rebekah would come back home, or if she did, how much longer we would have with her.

To God's glory, the surgery was more successful than even the surgeon hoped it might be!  Rebekah's heart and lung function are better today than they have ever been in her life.  She now only needs oxygen at night and just a handful of medications to keep her heart and lungs at their best.  What a blessing we have been given!

As we celebrate Rebekah's third birthday, we are ever grateful for God's blessings to us.  Rebekah is such a ray of sunshine in our house.  Her brothers absolutely adore her and would do almost anything for her.  We are so thankful to have another year to celebrate with our little Bekah Boo!

Instead of a big party this year, we have plans for a very girly day for Rebekah. She has been asking for "my earrings" for several weeks now. We are going to attempt to have her ears pierced for her birthday. Hopefully all goes well and by the end of her birthday she will have pink sparkly earrings. :)

Nancy

Rebekah-isms

I love the stage that Rebekah is in now - trying to say "bigger" words and sentences, only mixing them up.  :)  It's so fun to hear what she's going to say next!  I wanted to post some of them before I forget what she says.

Rebekah occasionally plays with her baby dolls, bottles, and stroller.  If you ask what her baby's name is, she will either answer with "I not know" or "Rebekah Ellis."  Either Rebekah has a lot of little clones or nameless babies!  :)  Rebekah also puts her finger in her baby dolls mouth and pretends the baby bites her.  Then she jumps back very startled and says "ouch!"

If there is something Rebekah doesn't like (particularly food), she always says "I not like it" followed by whatever "it" is.  For example, we had baked beans tonight, which usually she loves.  As soon as I set them in front of her, she said, "I not like it beans."  When it was time for medicine, Rebekah told Daddy, "I not like it messin (medicine)."  Then she promptly opened her mouth and took it!

Rebekah loves to sing!  Some of her current favorites are "Jesus Loves Me," "The B-I-B-L-E," "Zaccheus," and "Deep and Wide."  Although most of the songs are recognizable, they are considerably shortened versions of the originals.  :)

When Rebekah starts to get anxious or tired, she usually asks, "Where my taggy?"  If she gets very upset or hurt, the cry becomes, "I need my taggy!"

Rebekah recently had hiccups.  When I asked her if she had hiccups, she said, "I have hiccups in my mouth!"  And then she proceeded to reach her hand as far into her mouth as it would go and pointed to her throat.

Anytime we leave the house as a family, we always drive our van.  Rebekah usually says "Bye-bye, house! Bye-bye Daddy's truck!"

We spent Memorial Day weekend at Grampy and Grammy's house and got back home late Monday evening.  Tuesday morning when I went to get Rebekah up, she asked me, "We go Nana and Papa's house now?"  She asked me the same question later in the day and I told her we had more sleeps before we could go see Nana and Papa.  Rebekah then closed her eyes for approximately two seconds and popped them back open.  She said, "I no more sleeps!"

Nancy

Rebekah News

So....it's been a while! :)  So long, in fact, that Blogger has a whole new look and format behind the scenes that I'm having to get used to.  Hmmmm.....guess that'll teach me to not stay away so long!

But in the meantime, Rebekah has been doing fantastic!  She is growing, active, has been relatively healthy, and is so much fun.  I'll try to hit the highlights of the last few weeks......

 Future piano player?

Rebekah's last cardiac check-up was great!  Her pulmonary hypertension is still under control (higher than "normal," but much lower than what it was before surgery).  She continues to take Viagra three times a day and sleep with oxygen to keep that pressure down.  Rebekah's heart function also looks really good; probably the best it has ever been in her life!  The best news is that Rebekah is not going to be scheduled for a heart catheterization this summer like the doctors originally talked about!  As Rebekah's cardiologist said, we don't need to do an invasive procedure to confirm good news.  I'm thrilled about that!

 Rebekah and Great Grammy (Hi, Grandma!!)

We are still struggling a bit with the sleeping issues, but I anticipate that we will have ups and downs in the sleep department for quite a while to come.  Rebekah is currently taking Clonidine nightly to help regulate her sleep patterns.  At one point, right before we began the Clonidine, Rebekah was waking up as many as 20 times in a night!  And at least half of those times she would pull her oxygen off.  :(  We are trying to get her body used to the feel of sleeping through the night.  I have to say that we are improving.  Not perfect, but certainly improving!  Rebekah sleeps through the night, on average 2 or 3 nights a week, and the remaining nights she wakes up probably less than 5 times.

 Someone loves Fudge pops!

Since December (surgery), Rebekah has really grown considerably!  I think she was trying to make up for a year's worth of growth in a few months!  :)  She is more than three inches taller and at least five pounds heavier than she was before surgery.  Thankfully Rebekah has an older cousin who passes down clothes that she outgrows!  :)  For some reason, Rebekah actually went backwards in the last month and lost half a pound.  I'm hoping that we can contribute that to the cold that Rebekah had and that we see her weight bounce back up this month.

Our little fish!

In the last few weeks we have also seen Rebekah make good progress in her strength and endurance.  Rebekah has been working in the pool during her physical therapy time, and it has really paid off!  Rebekah can run and play for much longer periods of time before she gets winded or tired.  She is also doing really well at learning her limitation and knowing when she needs to take a break to rest.  About the only thing that Rebekah is still not doing consistently is stairs.  She still prefers someone to carry her up and down the stairs.  I think it just takes a lot of energy for her to do that.

 Sweet girl

Probably Rebekah's biggest challenge and obstacle right now is her speech.  It's not something I think about a lot because I am with her all the time and usually can understand most of what she says.  However, she is very difficult to understand in a quiet setting, and almost impossible to understand in a crowded environment.  Recently Rebekah was evaluated with our local school system and they found her speech to be significantly delayed.  As of now, Rebekah's left vocal cord is still paralyzed, which is contributing to her speech problems.  She also has articulation and phonemic delays, meaning that more than half of her words are either missing the beginning or ending sounds.  Her understanding of speech is excellent, though, so that is good news!

Rebekah continues to receive private speech therapy once a week.  Tomorrow we will have an IEP meeting with the school system and we anticipate, based on their evaluation and reports, that she will be offered speech therapy in a group setting once or twice a week in a local preschool.

 Silly girl

"The brothers" are all doing well and so happy that school is over for the summer!  They all did very well in their school work this year and are looking forward to a fun summer of swimming, playing, and visiting grandparents.  Friday begins our local library summer reading program, and they are already eager to get started.

Justin, Great Grammy, Rebekah, Zachary (back row),

Aaron and Caleb

Drew and I are also doing well.  I must admit, I was just as eager for summer vacation as the boys! :)  Teachers need a break also, right?!  Drew has an interview sometime next week (not sure of the day yet), and we are praying that it goes well and he is able to start full-time work again.   

And the littlest member of our family, formerly known as T6, is also doing well!  HE is growing, kicking, squirming and all-around being a boy!  :)  We are so excited that Rebekah will have a little brother, and she frequently pats my tummy and says hi to the baby.  At our 20 week ultrasound, everything looked completely normal - including the heart!  We will be having at least one more ultrasound at 29 weeks when he is a little bigger, just to make sure that everything still looks good.  I can't believe we will be meeting this little guy in about three months!

Rebekah "playing" piano.  

She even has to have books on the music rack!

I'll hopefully get another update posted sooner than the last one.  I'm thinking maybe things will get a little less hectic now that we are done with school, but that's probably wishful thinking, I'm sure.  :)

Nancy