December Update

Hi again! Although it has been a while since our last update, I am happy to report that no news is good news!  :)  Other than a couple of minor colds and a particularly benign stomach bug, Rebekah (and our family) has so far remained healthy!

In an effort to catch everyone up on exactly how Rebekah is doing right now, I will attempt to give a doctor-by-doctor update and hopefully not leave anything out!

Cardiology:  Rebekah had a follow-up visit and echocardiogram with her local cardiologist just after Thanksgiving.  We are praising the Lord that her heart function continues to look better and better.  In fact, at our next visit (not until March!!), he is going to consider reducing and/or eliminating one of the medications that Rebekah takes.  Wow!

Pulmonology:  Rebekah's lung(s) are continuing to remain stable and for that we are very grateful!  She has only had a couple of colds, but thankfully she has not had any major complications so far this winter.  I think the one thing that we see from a common cold is that it does take Rebekah longer to recover than her brothers.  All the more reason to continue with good hand washing and staying away from anyone who might be sick!

Endocrinology:  All of Rebekah's systems are functioning completely normally!  She has not struggled with any calcium deficiencies and her thyroid is at a normal level.  We have been told that her Endocrine system might take a bigger hit when she goes through puberty, but hopefully we have a looonnngg time before that happens!

Immunology:  Rebekah's  primary immunologist moved to another practice during the last year, so we are now seeing a new immunologist,who is very sweet.  After a traumatic blood draw, we got the happy news that Rebekah's immune system is functioning within normal limits.  Rebekah will continue to see her immunologist on a yearly basis, and we are thankful for each winter we get through without serious illnesses!

Christmas 2012

Gastroenterology:  Well, this is the one where it gets a little sticky....Rebekah has had quite a few GI issues, although thankfully they have been relatively minor.  Over the last few months, Rebekah has complained off and on about stomach pain, with no real answers.  During a recent office visit, Rebekah's GI doctor ordered some labwork and abdominal x-rays.  The labwork didn't show us anything since, unfortunately, it clotted before the tests could be run on it.  The x-rays, however, showed that Rebekah had a significant amount of gas in her abdomen.  One of the medications Rebekah takes can cause that, so the doctor decided to switch that medication for one that is gentler on the stomach.  So far Rebekah has had fewer complaints of stomach pain, although she does occasionally still complain.  

Sleep Medicine:  In general, Rebekah is sleeping fairly well.  She still needs the Clonidine to sleep, but most nights she does sleep peacefully.  Rebekah has a follow-up visit with her sleep doctor in February and he will schedule her for a sleep study after that.  

Audiology:  Rebekah got her hearing aide in November!!  We are so excited about her hearing aide!  Rebekah has mild-to-moderate hearing loss in her right ear and normal hearing in her left ear, so she only has one hearing aide.  And it's a good thing that it is pretty child-proof.  It's already had one dunking in the bath tub!  :)  Seriously, we have noticed such a big difference in her speech already.  Everyone from friends to Sunday school teachers to therapists has noticed how much more Rebekah is able to hear and how much better her speech is.  It is amazing what a difference it has made!  And even Rebekah notices - she reminds me to put her special ear on every morning, often as soon as she wakes up!

Genetics/ENT:  And here comes the other sticky part....velocardiofacial syndrome, a.k.a. 22q.11 deletion, a.k.a. DiGeorge Syndrome.  We've know since Rebekah was very young that she has an unusual mouth/throat/trachea anatomy. Her palate is unusually high, the back of her throat is set back farther than normal, and her airway is positioned forward of what is typical.  So now that Rebekah is medically stable from a life-threatening standpoint, we are going to start working on a few life-enhancing issues.  The first, and probably easiest, was the hearing aide.  Next we are going to try to give Rebekah some voice quality back. If you remember, Rebekah's left vocal chord was paralyzed during her open heart surgery last December.  There is no way to repair the vocal chord, but there is a surgery that can work around it to make it somewhat normal again.  However, it is a complicated surgery and may or may not be completely successful.  We have been told that the longer we can wait to do the surgery, the better.  There is another surgical possibility that would involve crossing the muscles in the back of Rebekah's throat to bring her throat closer to her palate.  It would not "fix" her vocal chord, but it would eliminate some of the breathy, nasal sounds in Rebekah's speech.  Right now we are tentatively planning to take Rebekah to Charleston in January for an evaluation to see if she would be a good candidate for the surgery.

I think that covers all of the recent medical updates.  :)  We have been very blessed with Rebekah's good health and thank you all for your prayers for our sweet girl!

 Zachary, Justin, Aaron, Caleb,

Rebekah and Bradley

Nancy

We're Outta Here!

Hi!  I am so excited to say that Rebekah's cath went so well and so quickly yesterday that I never had a chance to get my laptop out and post an update! :)

Rebekah was second case yesterday which meant that she didn't get taken back to the cath lab until about 12:30.  Since she couldn't have anything to eat or drink after midnight, we were a little nervous about how the morning would go.  I have to say, Rebekah couldn't have been more pleasant!  She asked for food and a drink a few times and told us that she was hungry, but she never cried or got upset.  We just told her she could have something to eat or drink after Dr. Baker finished taking pictures of her heart.

So her morning started out with vital signs, and EKG and an echocardiogram.  Rebekah sailed through all of that like the pro she is!  :)  Then we just hung out in the same day unit and waited for the cath lab to be ready.  Rebekah did some coloring, some sticker crafts, made a bead necklace, played with her baby brother and watched a movie.  She also did lots of talking with the nurses and giving hugs. :)

Once Rebekah headed to the cath lab, we went to get some lunch and a bit of fresh air and sunshine outside.  Two hours later Rebekah's nurse called to say that she was done and heading back to the recovery room.

We had a chance to talk to Dr. Baker and Dr. Do late yesterday afternoon.  Both of them were very pleased with their findings in the cath lab.  Rebekah's heart had no scar tissue buildup and no narrowing of any areas that needed ballooning or stenting.  Even more exciting, Rebekah's heart pressures are the best they have ever looked!

Of course, we are so very thankful and pleased with yesterday's findings.  The current plan is to continue the medications that Rebekah is currently on and come back to Charleston in about a year for a CT angiogram just to make sure that scar tissue hasn't developed around any of her conduits or shunts.  If Rebekah's cardiologist feels that she can wean off of the Viagra that she takes, they would do another heart cath at that time to determine her pressures.  But that's a big "IF" and not something we would consider for at least a year.

So Rebekah was discharged around 7:00 last night and we left the hospital, got some supper and crashed in our hotel room.  Rebekah was somewhat restless through the night, but she woke up this morning and has been playing quietly.  About the only lingering effect I have seen are a little bit of a hoarse voice from the breathing tube and a persistent bloody nose, presumably from the oxygen.

The plan for today is to get packed up and have some breakfast, then head for home shortly after that.  We'll probably take a couple of breaks just to let Rebekah out of her car seat to stretch her legs a little.  Tonight her pressure bandages can come off and I'm sure she'll feel much better after that.

Thank you all for your prayers and a huge thank you to our friends who have been keeping our boys.  We really appreciate your willingness to help out with the munchkins.  :)

Nancy

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