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

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