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

Soccer Game!

I had to break from our usual Rebekah posts to brag a little on our Justin.  He played an absolutely smashing soccer game today, and we are so proud of him!!

 Rebekah posing at the soccer field.

Justin started the game in offense, but got switched to goalie just a few minutes into the first quarter when our starting goalie took a kick to the knee and had to sit out for a while.  Justin has been playing goalie since the beginning of the season, but it's not really his favorite position.  Until today.  :) The goalies wear the yellow covers over their jerseys so that they are easily identified.

 Justin sending the ball back down the field.

Justin played goalie for the rest of the first quarter and all of second quarter.  He had at least 8 saves, and the opposing team did not score one goal on him!  We were very excited because we played the top team in our league today!  We talked with Justin and his coach this afternoon, and Justin is probably going to start playing goal more often.  He really gained a lot of confidence today, and he is just plain good at it!  :)

Justin going after the ball in middle position.

Justin sat out the third quarter (they try to rest each of the players for one quarter) and came back in the fourth quarter playing mid-field.  He also did great in that position!

The video shows Justin making two of his saves today.  Pardon all the screaming and cheering in the background.  We tend to get a little excited!  :)

Nancy

Our Prissy Tomboy

As it happened, I've gotten some really cute pictures of Rebekah showing her tomboy side recently.  I have to confess, she comes by it honestly.  I still like to get out and play a good game of almost any sport (any sport that doesn't require me to balance on a thin blade, anyway!).  And let's face it, with four older brothers, this girl had better learn to like sports!  :)

One of Rebekah's therapy goals is to throw a ball a distance of five feet, and also to catch a ball thrown to her from a distance of five feet.  Admittedly, the throwing goal is referring more to something the size of a tennis ball, but practice is practice, right?!  The boys were playing (nerf) football in the living room last week, and Rebekah had to join in.  After I looked at the pictures I realized that Rebekah throws like a *ahem* ..... girl.  This Mommy is hanging her head in shame.  We'll work on it, I promise!  :)  But at this point if she has to granny-throw, I'll take it!

No, I did not photoshop the above picture.  Rebekah truly threw one direction and the ball went in the complete opposite direction.  I was almost laughing too hard to snap the picture!  :)  Bekah loves nothing more than to be included with her brothers, no matter what they are doing!  She asks every day if it is soccer practice day.  Possibly some of that is related to the fact that she loves to get in the van and go anywhere, but still, she loves to do what her brothers are doing.

In other therapy goals, Rebekah is still practicing her stair climbing, standing on one foot, running, and jumping with two feet off the ground (at the same time, preferably!).  We are seeing steady progress, but Rebekah is really being held back by her lack of endurance right now.  We're hoping that some good days of pool therapy will help to build her muscles back as well as increase her stamina.  She loves to be in the water so much that it isn't "work" to work in the pool.  :)  We are working on getting some funding to take Rebekah to our local pool a couple of times a week through the summer.  Rebekah's therapist indicated that it would be a huge benefit for Rebekah to have the additional time in the pool.  If you think of it, please add this request to your prayer list.  I am really hoping that the funding will go through and make it possible!

Look, I even wear my brother's baseball hat!  :)  Seriously, Caleb was SO upset to see Bekah wearing his hat.  Now before you get too sympathetic with Caleb, let me explain that he has at least 3 other hats, and he cannot possibly wear them all at the same time.  Rebekah has outgrown her cute little pink ball cap, so we convinced a rather reluctant Caleb to share one of his hats with Rebekah. I just laughed and informed him to wait a few years.  Rebekah will be borrowing his hats, his shorts, his shirts, and anything else that she finds in his closet!  :)  Caleb didn't find that as amusing as I did, for some reason!

Rebekah is also doing well in speech therapy, although I am just beginning to realize how far we have to go.  I've always thought she had above average speech for her age (certainly compared to her brothers!), and she does have an amazing vocabulary!  The downside is that her speech is hyper-nasal and she has some articulation dysfunction.  Her biggest problems are leaving the beginning sounds off words, and of course sounding like she's talking through her nose (think of the word "today" sounding like noo-nay).  We were told to expect the nasal speech because of the formation of her palate and the back of her mouth.  This is all part of her genetic disorder.  As we've been working on sounds over the last few weeks, though, I realize that it isn't going to be a few weeks of therapy and she will learn the correct speech.  This is going to take months, if not years.  She is having a very difficult time even positioning her tongue in the right place to begin to make the sounds correctly.  If I've given you the impression that her speech is unintelligible, forgive me.  I can understand probably 90% or better of what she says.  But now I realize that I've just gotten adjusted to Rebekah's speech patterns, and I truly don't even realize when she's saying things incorrectly.  Speech therapy is a little bit of training for both Rebekah and Mommy!  :)

And how does Rebekah's paralyzed vocal cord play into her speech, you ask?  Well, it doesn't really change any of the sounds she makes.  It just makes it that much harder to hear her sounds.  It's similar to turning the volume on your radio or TV down to about half of what you normally set it at.  You can still hear much of what is said, but you will miss some of the softer sounds and inflections.  There is nothing that therapy can do to "fix" or correct Rebekah's vocal cord.  However, the therapy will teach Rebekah to say the sounds correctly, no matter what the volume is.  I know several people have asked about that, so I hope I've explained it clearly.  Stay tuned for another post about Rebekah's latest vocal cord scope.  :)

Nancy

Family Update

I just realized the other day that it's been quite a long time since I've posted any updates on what "The Brothers" have been up to.  So tonight I've posted some pictures and will try to briefly give updates on what's happening around our house.  :)  I had planned to proceed in a nice oldest-to-youngest fashion, but Blogger had other ideas when it uploaded pictures.  It is highly frustrating at best (and impossible at worst!) to rearrange pictures in Blogger, so we're going in semi-alphabetical order....

Aaron just celebrated his sixth birthday in January and last week joined the ranks of the toothless!  He proudly lost his first baby tooth on Wednesday last week, and he was very brave about it!  If you look closely at the first picture, he is admiring the tooth.  The Tooth Fairy almost got caught delivering his dollar because Aaron slept with his legs under his pillow and I , I mean The Tooth Fairy, almost couldn't get the tooth out without waking him up.  All turned out well, though, and Aaron was excited to earn a dollar.  :)

 It really came out!!!

Aaron is more than halfway through kindergarten, and is doing really well!  He is especially strong in math, and that is easily his favorite subject.  He also enjoys social studies and science.  Reading is coming a little harder for him, but he is making good progress.

 Beaming!!

Aaron is doing all other little-boy things and keeps plenty busy.  His favorites are Legos, Playmobil, any kind of building blocks, and all kinds of imaginative role-playing.  His goal for the summer is to ride his bike without training wheels.  I'm sure he'll be racing around with no training wheels before I know it!

 Sweet boy

Caleb is eagerly looking forward to his birthday in April, when he will be four!!  He asks me at least every other day how much longer till his birthday.  :)  Recently we noticed Caleb's eyes were crossing when he was working on puzzles or playing with small toys.  I asked Rebekah's ophthalmologist about it, and he wanted to take a look at Caleb to see what was going on.

 Caleb's favorite is the zebra striped patch.

He thinks it's pretty cool that he looks like

Patch the Pirate!

As it turns out, Caleb has a couple of issues with his eyes that went undetected until just recently.  He has never complained of not being able to see, but our sweet boy is very, very farsighted!  He struggles to see anything from what is called "mid-range" to close.  I am so very thankful that we caught this now, before he starts reading.

Caleb's eyes are also not focusing together.  This actually allowed him to get by with his poor vision for longer that would otherwise have been possible.  Each eye focuses individually on what is in front of him, instead of focusing together.  The result is that his eyes began crossing as it became more of a struggle for him to see clearly.

So Caleb has a very handsome new pair of glasses that help him to see so much better!  He also wears a pirate patch for a minimum of 30 minutes each day in order to strengthen his weaker eye.  This will help to teach his eyes to work together, as well.

 I love Caleb's glasses!  He is so handsome!

In other Caleb news, he is doing a great job learning right along with Aaron.  Caleb can count to 20 and do very simple word problems in his head.  He knows all of his alphabet letters and almost all of their sounds.  He has also started writing his name, and I must say it is very well done for a three year old!

My sweet Caleb

I had to post this silly picture of all the kiddos.  They have so much fun together, and we are so blessed that our children are so close.  I certainly won't say that they don't have their moments (because they do!!), but in general they are so sweet with each other.  What can I say?  We love our sweet boys and girl!

Silly siblings!

 Pucker up!  Justin was having second thoughts

about kissing that spaghetti-covered face!  :)

So what's new with Miss Rebekah?  Well, I have to report that she is doing much, much better this week!  Thank you all for praying for her!  With the help of our wonderful pediatrician making sure we had the antibiotics that Rebekah needed, we were able to start them just a couple of hours after Rebekah began running a fever.  I fully attribute her quick recovery to your prayers and the effectiveness of the antibiotics!  I was very concerned that this illness would earn Rebekah a hospital visit, but she handled it like a champ.  We did, however, have to reschedule her MUSC trip for March 9, but the doctor was very understanding.

 Yep, I can be just as silly as the brothers!

Just as a side note, Rebekah has started referring to her brothers collectively.  It is not unusual to hear her running through the house calling, "Brothers! Brothers!" when she needs or wants something.  It is also very cute!  :)

Rebekah is continuing to do well in therapy, but it's about to get kicked up a notch.  Rebekah's PT has noted that Rebekah just does not have the core body strength (think trunk muscles) that she had before surgery.  So she suggested this week that we go back to aquatic therapy every other week.  If you have read the blog for more than a year, you might remember that Rebekah had aquatic therapy before her second surgery, and she did very well with it.  As a matter of fact, the pool was the first place that she stood on her own!  Rebekah's PT thinks that being in the water will help Rebekah with her balance, core strength and endurance.  So next week Thursday will be Rebekah's first day in the pool.  I think she's going to love it!

In sleep study news, Rebekah's next sleep study will be Monday night.  I'm anticipating an even longer night than the last one.  This time Rebekah will have her CPAP mask on (we call it her elephant), and they will be trying to adjust the settings to find a good place for Rebekah.  If they can get her to a place where she is not having any apnea "events" then the doctor will send the results and settings to our home health company and they will bring a machine to Rebekah and get her started on using it.  The whole process could take up to two weeks.  If the doctor determines that a CPAP does not meet Rebekah's needs, he will schedule us for yet another sleep study to try the BiPAP machine and see where we go from there.  I would definitely ask that you pray for sleep for both Rebekah and I that night!

 What is it with this girl and messy kisses?!

Next up is Justin, aka Goose.  Looking at these pictures, you would think that Justin is a complete ham, but in reality, he is the most quiet, shy one of our group.  He's either going to ignore the fact that I posted these pictures, or I'm going to be in serious trouble!  :)

Justin is nine years old, hard-working, responsible, and usually the first one to volunteer to help if someone has a problem.  He is an incredibly sweet boy, and he is a complete prankster if he thinks no one is watching.  At least once a week (and usually more!) he pops out from behind a door or around a corner and gives me a heart attack!

 It's fun to see what pictures end up on the camera 

when you give it to the kids for the afternoon.  :)

This year Justin had the opportunity to play soccer for the first time.  He has never played any organized sport, and has never really been that interested in sports.  But he was anxious to try, and he is really enjoying it.  One of our friends is the coach, and Justin's friend is also on the team.  They played against a much more experienced team their first game and lost, but they won last week.  I'm glad Justin has the opportunity to learn a new sport!

 Justin enjoys playing mid-field the best.

We also learned this week that Justin made it into the gifted and talented program!  We homeschool our boys through an online charter school, so they are offered the same benefits and programs as our local public schools offer.  We are thrilled that Justin has done so well!  Next year in third grade he will begin taking a more advanced math, as well as an advanced literature class.  He took a sign language course this year and loved it.

 Sweet and silly Goose!

Now for our biggest boy, Zachary!  Zac is excited about his upcoming double-digit birthday in March.  He is rapidly growing into a young gentleman.  Zac is the first one to offer to open a door or help carry heavy things.  He truly is my right-hand man around home.  He (usually) doesn't complain about being asked to help with his younger siblings, and has learned almost all of Rebekah's care.  He even changes diapers and dresses his sister!  Yes, you can all be jealous!  :)

Thumbs up for Zac's brownies!

Recently Zachary has shown a real interest in cooking and baking.  Many nights he is my shadow in the kitchen helping me cook dinner.  On Sunday afternoons he enjoys baking.  We enjoy it, too!  His most recent accomplishments are brownies and coffee cake - from scratch!  

Zachary is also doing very, very well in school.  He is in the gifted and talented program in fourth grade, so he is technically taking fifth grade math, advanced science and an additional literature course.  He especially enjoys social studies, and is currently studying the Civil War era.  We have made several trips to the library for additional books about the Civil War, and Zac reads them voraciously!  Zachary is also enjoying his first year of Spanish.  He is currently working on his first long-term science project.  Zachary chose to test potatoes to see where they will sprout the fastest.  If you come visit, don't be alarmed if you find potatoes in strange locations! :)

Yummy brownies, Chef Zac!

And last, but certainly not least, let me introduce you to Baby Ellis!  Baby (affectionately nicknamed Thing Six and shortened to T6) is due September 5.  Zachary is hoping T6 is a boy; Justin is hoping he/she is left-handed; Aaron is hoping for a girl, and Caleb wanted twins!!  Thankfully, Caleb's wish was not granted.  :)  Rebekah doesn't really have a clue, although we are teaching her to say "I'm a big sister!"

Baby Ellis

Of course, one of the first things that we were concerned about is whether or not this baby could have a heart defect.  It is possible.  The risks are greater because of Rebekah.  But we are choosing to trust that God has the perfect baby for our family. Not necessarily "perfect" according to the world's standards, but a baby who will fit perfectly into His plan for our lives.  As far as the doctors have been able to determine at this point, everything looks good.  We won't be able to learn anything about this baby's heart until our first fetal echo in April.  We're also hoping that T6 will cooperate and let us know if he/she is a he or a she.  :)

Thank you all for praying for Rebekah and our family.  We appreciate each and every one of you!

Nancy

Getting Sick?

Thankfully the last couple of days have been pretty uneventful around here.  :)  Rebekah is completely enjoying being at home with her brothers and just being a toddler!  Aaron and Caleb and Rebekah painted pet rocks on Friday.  Rebekah's rock was red.  The rock wasn't the only thing that was red!!  :)  It is so much fun to see Rebekah feeling well enough to do projects with her brothers!

Rebekah has continued to have periods of coughing and choking over the last several days.  She has done well with thickened liquids, and the coughing doesn't seem to be during meals or when she is drinking liquids.  For a while, the coughing was mainly during the night and in the mornings when Rebekah first woke up.  However, now she is coughing when she cries, and off and on during the day.  I think we are headed to see the pediatrician in the morning to see what might be going on.  I'm hoping that this is not the result of an episode of aspiration sometime before we started using the thickener in Rebekah's drinks.

Friday night I had the pleasure of meeting with a group of heart moms from our local area.  Three hours flew by so quickly!  It was so encouraging to spend time talking with other moms whose children struggle with some of the same things that Rebekah does.  It was definitely worth the drive to get there!

While I was gone Friday night, Drew and the boys got out our Twister game.  The boys had so much fun playing.  I'm amazed at how twisted they were!  :)

Saturday was Aaron's birthday, so of course we had to make a birthday cake!  This little girl hasn't been into the chocolate at all, has she?!  :)  I love how innocent she looks - Who, me?!  She took great pleasure in sneaking her little finger into the frosting when she thought I wasn't looking.  In spite of her help, I thought Aaron's Angry Birds cake turned out pretty cute.

Our little Aaron-bear turned six years old this year.  Wow!  It's hard to believe our little peanut is this big.  He is such a good helper and adores his little sister.  We are so thankful he's a part of our family!!

This morning Rebekah had her vision check-up.  We are very blessed to have a pediatric ophthalmologist less than twenty minutes from us.  He was very pleased with Rebekah's eyes.  Her ptosis seemed a little better to him today, so we are grateful for that.  We will continue to see the eye doctor every six months indefinitely to continue to make sure that Rebekah's vision is not changing or worsening.

No, no, not another picture!  :)  Well, okay, maybe just one picture.  You can really see Rebekah's black eye now.  Hopefully it will start to fade in another couple of days.

Rebekah has been cleared by her cardiologist to resume therapy whenever we feel she is ready to start.  Rebekah's awesome EI will be coming to visit on Friday, and we will set up PT to start probably next week.  I'm just a little hesitant to push Rebekah too far, especially when she is having the choking and coughing.  We'll see what tomorrow's doctor's visit brings.

I love Rebekah's beautiful outfit here.  Strawberry shortcake scarf, hat and Great-Grammy's mittens.  Rebekah asks to put them on and then takes them off about 3,286 times each day.  I'm glad she loves all of her girly accessories!  :)

No autographs, please!  :)

I'll hopefully update sometime tomorrow after we find out what the doctor says.  Pray that it's nothing serious and Rebekah will be feeling better soon!

Nancy

Audiology, an injury and two big blessings!

All right, everyone, don't have a heart attack because I posted two days in a row!  :)  Don't get used to it, either!!  :)

I'll start with the blessings, since I'm excited to tell you all about them.  Then I'll get to the nitty-gritty stuff of today's appointment.  Over the Christmas season, we were given several gift cards and cash to be used for our family.  I won't embarrass those who gave, but you know who you are.  Thank you from the bottom of our hearts.  As you will see below, we combined the gifts to purchase a very, very much needed item in our home!

So after much research and deliberation, this is how we decided to use the money.  If you have been to our home in the last couple of years, you will know that our kitchen eat-in area housed a small kitchen table and a card table to seat all of our family.  We don't have a separate dining room, so to have guests over for a meal was always interesting!  :)  We certainly have not complained about our dining room seating (or lack thereof), but we felt like we really needed room for our entire family to sit at one table for meals!  We ended up purchasing two rectangular dining room tables that we have pushed together to form one large (almost) square table.  We have benches on three sides, and hope to get a set of two chairs in the near future.  This will give us seating for 10 as it is right now, or we can slide the two tables apart and seat 15 when we have guests!  Thank you to everyone who made this lovely addition to our home possible!

The other big blessing today is that we finally found thickener for Rebekah's drinks!!!  Our fantastic EI, Katherine, was such a huge help in finding out where we needed to look for it. I don't know why I didn't think to call her last week, but anyway, she got the information for me in about 20 minutes (or less!).  As it turns out, Walgreen's carries the Thick It product on their store shelves, so I simply walked in and purchased it.  Wow!! I tried some in Rebekah's milk this afternoon, but the directions on the package literally turned the milk to glue.  Ugh.  Rebekah took one sip and handed the cup back to me and asked for milk!  :)  So, I put in about half of the recommended amount of thickener, and it worked beautifully! She was able to drink her entire cup of milk at dinner tonight without choking once!!!  Thank you so much, Katherine, for all your help!! It was great to see you today, and we are all excited to see you next week!

 Yep, she's pointing to her first black eye!

Now for the injury.... It's a little hard to see in the picture above, but Rebekah is sporting her first black eye!  She was being such a big girl and helping me carry groceries into the house when she got tripped up and fell on a box of crackers.  Thankfully the corner of the box caught her just under the eye instead of in  her eye!  She cried and willingly held an ice pack on it for about two minutes, then she was off and playing again.  It's definitely going to be purple tomorrow!

The rest of the story will be interspersed with pictures of the kids helping Daddy put the tables together.  Even Rebekah wanted to help "hold" the table legs while Drew put the screws in.  She is such a good helper!!  The younger boys were all holding various pieces of hardware for Daddy, while Zac had his own job taking off the supports that were used in shipping.

Rebekah had a follow-up audiology appointment today.  She generally has follow-ups about every six months, and the last one was in early July, I believe.  I have to say, Rebekah did absolutely fantastic for her appointment today.  She was 100% cooperative, and I couldn't have asked her to try harder than she did.  The audiologist also noted, for the first time ever, that there was no fluid in either of Rebekah's ears, so we were able to get very, very accurate results at this appointment.

Oh, one quick rabbit trail, then I'll get back to the audiology appointment.  I gave the boys hair cuts on Monday, and Zac wanted his hair buzzed really short.  Poor Zac has such incredibly thick hair that I can't blame him.  Anyway, Rebekah realized that it felt fuzzy, so she is constantly asking to rub Zac's head - no joking!!  She is absolutely ecstatic when she is rubbing his hair!  Anyway, she now wants to rub all of her brother's heads, and they almost fight over which head of hair she's going to rub next.  Silly boys!

Okay, so for Rebekah's appointment today, her audiologist wanted to try a different type of testing to see if we could get a more accurate picture of Rebekah's hearing.  Typically they wait until kids are between the ages of three and four to do this type of testing, but Rebekah was being ultra-cooperative today, so the audiologist wanted to give it a try.  In the past, Rebekah and I would sit in the sound booth and sounds would come from different corners of the room.  The audiologist would judge Rebekah's hearing by whether or not she turned her head in the direction of the sound.  So you can see why it is not a clearly accurate type of testing.

Today the audiologist put something like ear buds in Rebekah's ears and was able to speak or play a sound in each specific ear separately.  Then based on whether or not Rebekah responded to the voice or sound, we were able to get a more clear picture of her hearing.

I'm not entirely sure of what the numbers mean, or what they are measuring, but the audiologist told me that a range from 0-15 was normal hearing.  Rebekah scored 10 in her left ear. Yippee!!  Her audiologist also told me that if one ear is stronger than another, the left ear is definitely the best one to be stronger because it has more to do with language.  (I'm sure there is a much more technical reason, but that's the short version that I got!  :)  Rebekah's right ear scored at 30, which is considered mild hearing loss.  The audiologist then did a different type of test with a headband-type thing that fastened behind Rebekah's right ear and measured the vibrations of her inner ear.  It appears that Rebekah's inner ear is working fine, but the middle ear is not sending the sounds all the way through so the inner ear can "hear" them.   The audiologist said that a hearing aide would definitely correct the middle ear dysfunction so that Rebekah can hear clearly in both ears.  I think I mentioned after one of Rebekah's previous audiology appointments that if she needed a hearing aide, it would probably only be through elementary school while listening skills are so vitally important.  We would like for Rebekah to have every opportunity possible to do her very best when she begins school, and even now as she is starting to imitate some of the letters and sounds with her brothers.

So the plan is to have another audiology appointment at the end of March.  We are pretty certain that we got accurate results today, but the audiologist wants to have two similar results before we order a hearing aide for Rebekah.  Assuming that the results in March are similar to the ones we got today, the audiologist will be recommending a hearing aide for Rebekah's right ear.  I'm voting for pink!  :)  If the results in March are better than today, then Rebekah will continue to have follow-up visits for a few more years to monitor her hearing.

I'm not sure why Justin looks so grumpy in this picture.  I think I may have caught him starting to talk.  He was begging to have his picture taken with Rebekah.  You can tell our kids are just so camera-shy!  :)

We are hoping for an uneventful, relaxing weekend around here.  Hopefully no injuries and no emergencies!! :)  Thank you all for your love and prayers!

Nancy

January!

Hi!  Here's the long-awaited update, and I have no excuse except that I've been busy enjoying being at home with all my family in the same place!  :)

Drew, Rebekah and I did make it to North Carolina to be with the boys and grandparents for Christmas.  The boys were thrilled to see their baby sister!  We arrived right at lunch time on Christmas Eve, and had barely carried our luggage inside when Rebekah fell and hit her head on an end table.  It bled, and bled, and bled.  We ended up taking her to an urgent care center where they put two staples in her head.  That was not a fun experience, but it was better than stitches!  I never could get her to hold still enough for a picture of the damage, but trust me, there are two staples under that big red bow!  Our pediatrician took them out last week in his office, and Rebekah didn't even cry!

 This was an attempt at getting a good 
Christmas picture of the kids together.

It was good except for Caleb deciding to
 pinch his nose with his fingers.

There's always one in every bunch!

So we had a very enjoyable time with friends and family for Christmas, and even took Rebekah to church at Beacon Baptist to see our friends there.

 Not sure what they are all looking at, 
but clearly I lost their interest! :)

Caleb, Justin, Rebekah, Zachary, and Aaron

 Is one out of five looking at the camera a bad record?!

 Aaron and Caleb

Rebekah had her second post-surgery follow up appointment with Dr. Lucas yesterday.  He is quite pleased with how Rebekah is doing from a cardiac standpoint!  Her heart function is looking great, and her pressures are staying about where they were when she came out of surgery.  Overall we couldn't be more pleased with how she is doing!

 Another attempt at getting a picture of all the kids. 

Zac decided he was tired and went to change clothes 

before I had a chance to drag him into the picture! :)

As far as a non-cardiac standpoint, Rebekah has a few hiccups we've been working through.  And, yes, she has been getting hiccups quite frequently - three or four times a day! They are so cute with her squeaky little voice!  :)

The biggest obstacle we are working on right now is getting a thickener for Rebekah's drinks. If you remember, Rebekah passed the swallow study at MUSC, but had a delayed swallow that they felt has always been unique to her.  Well, since we've been home, she has been choking and coughing with almost every liquid we have tried to give her.  Water, apple juice, grape juice, soda, and usually milk will all make her choke and cough unless she takes very, very tiny sips.  And it's almost impossible to reason with a 2 and 1/2 year old and make her understand that she needs to take very tiny sips.

 Justin, Rebekah and Aaron

After talking with Rebekah's pediatrician, we have decided that Rebekah needs to be drinking thickened liquids (honey consistency) for now, at least until we see some improvement in her vocal cord.  Dr. D didn't see any reason to repeat the swallow study since we know that obviously Rebekah is choking on her drinks and the swallow study will not change the method of treatment.  The decision was the easy part.  It has been crazy to try to find the thickener that she needs!!  Our pharmacy (Target) has not been able to get any for us yet, although they are still working on it.  Rebekah's DME (Apria) could possibly get it, but it's not covered by Medicaid, and they won't outright sell it to us.  Grrrr!!!!  Has anyone else had to get thickener for their child?  If so, what is the most cost effective way to purchase it? I did some online shopping and did find some, but I'm not really sure I want to invest in a large container/canister/packets until we find what works best for Rebekah.  I would love to hear from anyone else who has used this.  What worked best for you?  Favorite brands? Gel or powder?

 See, I told you there's one in every bunch.

Caleb just had to stick that balloon on the end of

his nose right before I snapped the picture. Nice.

Rebekah is still wearing her oxygen at night, and probably will be for a while.  Dr. L was ready to tell us that she could lose the oxygen altogether, but when I told him her sats dropped at night when the cannula happens to slip off, obviously that changed his mind.  :)  From what he can tell, there is no cardiac reason for Rebekah to be needing the oxygen at night, so it's time to look for another reason that she has become oxygen-dependent.

 Can you tell they've had enough of the camera?!

If you've been reading the blog for about a year (or more!) you might remember that we have discussed the possibility of Rebekah having some form of sleep apnea for quite a while now.  Dr. L said that it is now time to refer Rebekah to our local pediatric sleep medicine doctor for an evaluation and likely a sleep study.  It is possible that Rebekah has always had some sleep apnea, perhaps mild, that has been magnified by the damage done to her vocal cord.  Either way, Rebekah will be having an evaluation with Dr. G sometime in February to see if there is something else that we can be doing to help her sleep better.

 Bekah says enough of these silly boys! 

I'm out of here!!

Dr. L did not see any fluid on or around Rebekah's heart and lungs in her echo yesterday, so he told us to drop one of Rebekah's doses of Lasix.  She had been taking Lasix twice daily, but now we are only giving it in the mornings.  Yay!!  If Rebekah's next echo (in February) looks the same, he will give us the okay to drop Lasix altogether!!  That will be the first time ever in Rebekah's life that she will be off Lasix.  Wow!

This last picture deserves a paragraph all it's own.  Justin and Rebekah are bundled up to head out to Rebekah's doctor's appointments yesterday.  And, yes, it was COLD here - it was 22* when we were leaving!  (Okay, now that I look at the picture, maybe they were bundled up a little excessively! :)  Anyway, the hats and scarves are compliments of Grammy, and the mittens were made by Great Grammy in New York.  Thank you, Great Grammy!!  They fit perfectly and we all love them!!

Tomorrow morning Rebekah has an audiology appointment to recheck her hearing.  She has them every six months and will continue having them at least until she's close to her fourth birthday.  I'm glad to know that she is being followed by so many good doctors!

Nancy