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

This and That

I'll just start out with the most-frequently-asked question:  No, we haven't heard from Charleston!  :)  I think I'll be shouting from the rooftops when we finally get a call from them!  :)

 Rebekah, her babies and taggie

Rebekah has just started to sleep with some of her baby dolls.  She usually doesn't ask to sleep with them, but if we ask her if she would like a baby, she will almost always choose one.  A couple of days ago, she had to take two of her babies to bed at naptime.  She was so cute with the baby dolls and taggie that I had to run downstairs to grab the camera.  Rebekah was a little confused when I came back into her room with the camera, but she patiently tolerated me snapping a couple of pictures.  I think I'll save a few of these pictures for her high school graduation party!  :)

 Yikes!  I didn't realize how dirty my broom is!

One of the developmental stages that kids go through is imitation.  It has been a little slow in coming for Rebekah, but she is starting to imitate some grown-up jobs and activities.  One is playing with baby dolls, which she really isn't doing much, but occasionally she will.  Another is "cooking" with some pans, or bowls, spoons, whatever I pull out of the cabinets.  If you missed the video in the post below, Rebekah is "cooking" breakfast for me.  :)  Something else Rebekah did for the first time this week is "sweep" the floor.  :)  Prior to this week, Rebekah mostly just followed me around when I was sweeping.  This time, I laid the broom down to grab the dustpan and Rebekah took off with it!  Do you see how serious she looks in the picture?  Rebekah was working so hard to sweep the floor - it took a lot out of her to hold that big broom up!  :)  It is so much fun to watch Rebekah do more big girl things!

 The Goose and Boo - sounds like a story book title!  :)

If you know us in real life, you know that we use a lot of nicknames at our house.  One that has stuck (and one that Justin loves!) is Goose.  It actually started from us calling him a silly goose because he was (and is!) so silly sometimes!  Justin is definitely our practical joker.  I take great joy in seeing him play jokes on his brothers, and sometimes on us.  He is so much fun!  Anyway, silly goose became shortened over time to Goose and Justin totally loves it.  It makes for some fun teasing, too.  "Get up in your bed or I'm going to pluck your tail feathers!" is one he hears a lot.  Or, "Enjoy your afternoon because tomorrow we're roasting a Goose for dinner!".

Boo got shortened from Bekah-boo, which we still use on occasion.  It seems to fit Rebekah.  The boys also think she looks a little like the character Boo in "Monster's, Inc."  In fact, Rebekah has started using "Boo" to refer to herself.  Rebekah and/or Bekah still seem to be a lot for her to say, so Boo works perfectly.  :)  This afternoon she looked at me and asked, "Boo bye-bye?"

 Justin and Bekah

I think I mentioned in my last post that Justin and Rebekah are completely inseparable!  Here's more proof!  Justin asks me constantly to take a picture of him with Rebekah.  He is such a sweet boy!  Rebekah loves her brothers, but I think Justin has a special place in her heart.  Lately she has been looking at her brothers and saying "I lul oo." (I love you)  So, so cute!!

 The three amigos!

Justin, Aaron and Rebekah are the most alike in personalities and physically.  Aaron had some minor birth defects and required a brief stay in the NICU and a surgical procedure the day after he was born.  He was our first experience with any kind of "major" medical issues with our children.

She's got some growing to do before she fills those shoes!

I have to admit, Rebekah has good taste in shoes!  ;)  She did a great job balancing in slip-on shoes with heels from the kitchen to the bathroom door.  I just love the sweater Rebekah is wearing.  It's one my mom found last year and I've been waiting for Rebekah to grow into it.  So cute!! It is SOOO much fun to have a girl to dress up, especially after four boys.  (But don't think for a minute that we don't have fun dressing up the boys, too!)

Rebekah has physical therapy in the morning.  DeeAnn is going to see how Rebekah does at therapy, and if things go well, we may switch back to an every-other-week schedule for a while.  We're hoping so!

Don't forget to check out the Ride for Mike 2011 page (linked from the top left sidebar).  If you are planning to come to the Family Fun Ride, or the picnic, please let us know so that we have an accurate count.

Nancy

August 16

I realize that my post is titled August 16 and this is only July; I haven't lost my mind....yet! :)

We received our phone call from MUSC last week to schedule Rebekah's next heart catheterization, and it is scheduled for August 16! As of right now Rebekah is scheduled for first case, and we are thrilled about that. Since she cannot have anything to eat after midnight and only clear liquids till 3am on the night before a heart cath, we are so happy that she is first case and will be going back around 7am for her heart cath.

Hi, y'all!

Rebekah has been making great strides in almost every area of her development. She is walking more/better, talking much more, interacting more with Drew and I, her brothers and almost everyone she sees! It takes us forever to get through a grocery store because Rebekah wants to wave and say "hi" to people she sees. It's really fun! :)

Sporting the movie star look!

Rebekah has been putting two word phrases together for several weeks. Just this week she began to put three words together: "Mommy drop it," Daddy, please stop!" or "I get it" have been some of the sentences we heard this week. It is so fun to see and hear Rebekah make so many great strides in her vocabulary and expression. She is learning to communicate more with us, and we have definitely seen Rebekah express her opinions!

I just love how Rebekah posed so casually for this picture!

Rebekah has had lots of opportunities to play with friends and visit grandparents this summer. She has had so much fun experiencing things like swimming, going to a bounce house, going to the park and just having fun with friends. It is much different now that Rebekah is walking (almost running!) and able to interact with new situations on her own, not because Mommy or Daddy is holding her.

My adorable birthday outfit from Aunt Aimee and Uncle Scott!

Rebekah has still been experiencing unexplained fatigue several days a week. This is one of the reasons that we are having Rebekah's heart catheterization sooner rather than later. We are hoping that the cath will give us some direction to explain the fatigue that has Rebekah sleeping sometimes 17-18 hours a day. If the cath does not give us some explanation for the fatigue Rebekah is experiencing, the next step will be a sleep study to see if Rebekah has some kind of sleep disorder that is not allowing her to have the deep restful sleep that she needs.

Beautiful girl!

This is probably one of my favorite pictures of Rebekah! She is doing so well right now, and we are so thankful to be able to enjoy our time with her. Please continue to pray for Rebekah's health as we approach the cath date and for conclusive results from the cath so we can figure out why Rebekah seems so fatigued.

Nancy

Catching Up

So I'm finally back with an update...and pictures! :) To say that the last few weeks have been busy would be an understatement, but it is a good kind of busy. Drew is busy finishing the last couple of weeks of school (for those of you who don't know, he is back in school working on a Computer Science degree), I am busy trying to keep up with everyone's crazy schedules, the older boys are busy in their school work, and the younger boys are just plain busy!! And of course, Rebekah has an agenda all her own. :)

No, I didn't just randomly stick in a picture of my cabinet door.

If you look closely, you will see very tiny fingers peeping out of the top.

Those very tiny fingers belong to......

.....this very special little girl!

We were pleased to learn at Rebekah's most recent trip to the pediatrician that she does not have an ear infection! If you read the last post, you will remember that we had some concerns about another ear infection, but not this time! There is still fluid in Rebekah's ears, so we do have some concerns that we will be addressing at Rebekah's audiology appointment in a couple of months, but for now she is infection-free!

Rebekah loves to feed her baby dolls a bottle. :)

Rebekah's most recent cardiology visit was also encouraging. Dr. Lucas was very pleased with Rebekah's echo. It seems that the pressures in her pulmonary arteries have gone down again (remember, they can only estimate using echo, but this is a good sign!). Rebekah's heart function continues to look good also. Yippee!! We had some concerns prior to the appointment about an increase in Rebekah's sleeping, but it appears to be unrelated to her heart. Since then, she has gone back to a normal-for-her sleep routine. Dr. Lucas is targeting late summer or very early fall for the date for Rebekah's next heart catheterization. This will be an important catheterization because it will give us the exact measurement of the pulmonary pressures. We need the pressures to continue to drop between now and then! If the pressures are not down significantly from the last heart cath, then Rebekah will likely need another open heart surgery to re-open a portion of her VSD that was closed in November. We are praying that the pressures are down enough to buy her a little more time before her next surgery!!

Just being cute!

Between now and the end of the summer, we will continue seeing Dr. Lucas (cardiology) once a month. The plan is for Rebekah to grow, grow, grow this summer and to stay healthy and out of the hospital! Rebekah will continue OT at least until June when her therapist goes on maternity leave. We will re-evaluate at that point and determine if Rebekah still needs services.

Showing off a new hat!

Rebekah is making great progress in PT, and we are so very thankful for that! She is an amazing little fighter and has come so far since November. If you remember, she was just starting to pull up on things and stand the week before her heart surgery in November. Now she is walking everywhere! Rebekah's PT is helping Rebekah with stairs and stepping up and down from different platforms. While this is a necessary skill for Rebekah to learn, it is also helping to improve Rebekah's balance and stability while she is walking. The next thing on the schedule is jumping...I know that will be fun! :)

We have noticed in the last few weeks that Rebekah has been walking on the insides of her feet much of the time. Because we are super paranoid about Rebekah's development, it caught our attention. I mentioned it to her PT last week, and it turns out that Rebekah (and all of our boys, as we discovered!) is flat-footed. Not only that but her feet are actually rolling inward as she walks. So, she has earned yet another doctor - an orthotist! Rebekah will be having casts made of both feet so that she can have plastic orthotics made for her shoes. This will help to keep her feet in the correct position when she walks. Hopefully this will help prevent any future leg/foot/hip problems as she grows.

Please continue to keep Rebekah and our family in your prayers. We are so thankful for each of you and your ministry of prayer for our family.

Nancy

Officially 20 months!

Rebekah has been her adorably cute self this week! It seems like every time I turn around, she is saying a new word, or trying something new. :) Since February didn't have 29 days this year, Rebekah gets to be 19 months old for another month, right? I guess not. So, it's fair to say that sometime in the last couple of days Rebekah hit the 20 month milestone.

Today was a great day in physical therapy. For various reasons, we have not been to PT in three weeks. In fact, the last time we were at PT, Rebekah was just starting to take 3-4 steps in between DeeAnn and me. What a difference three weeks can make! DeeAnn was thrilled to see Rebekah walking all over the gym! Not only was Rebekah walking, but she was climbing in and out of the ball pit, climbing onto the small trampoline, walking up the ramp to the large trampoline, and generally trying out anything she put her mind to. It is just amazing to watch her growing stronger and developing more each day!

Tomorrow Rebekah is supposed to be catching up on her 18 month shots. I called today and asked to see the doctor instead (normally we would just see the nurse for shots). Rebekah has been pulling, poking and generally messing with her ears more the last two or three days, and I want to make sure the ear infection from last week is cleared up. Especially since we are heading for Charleston this weekend.

Thankfully, I think we have all gotten rid of the cold that we seemed to be sharing for the last few weeks. Except for the occasional cough, there are no signs of that cold bug anywhere in the house! I guess Lysol and fresh air did the trick! :)

I have some (hopefully) super-cute pictures and some more videos to download from my camera. I've been procrastinating because there is so much video that I know it's going to take quite a while to download. Maybe actually writing it will be a motivation for me to download it so I can post some new picture and video on the blog. :)

Hope you are all having a great week! I can't believe it's half over. Yikes! I have too much to do in the next three days!!

Nancy

Happy Saturday!

I'm happy to say that I think we are all on the mend at our house! What a crazy couple of weeks of being sick! Rebekah ended up having an ear infection before all was said and done, but she is feeling much better now after a few days of antibiotics. Please pray that Rebekah (and the rest of us!) stay well between now and next week!

We received "official" papers in the mail this week regarding Rebekah's heart catheterization. I know it's been scheduled for months, but it always makes it seem more real when we get the official paperwork. I still don't know what time Rebekah's cath is scheduled, but I'm hoping that it's first case. Last March Rebekah was scheduled for 2nd case (11:00) and the first case went long. It was between 1:00 and 2:00 when she finally got back for her case. We also don't know what to expect from the case itself. The last cath Rebekah had was strictly exploratory. This time, there will be procedures done, if there is anything that can be done to help relieve Rebekah's high pressures. As of the last discussion our cardiologist here had with the surgeon, Dr. Bradley did not really think there would be anything that could be done in the cath lab to relieve the pressure, but they will be checking. Dr. Baker will be the doctor doing the cath. He has done all of Rebekah's caths so far.

In other (great!!) news, Rebekah has tested out of occupational therapy!! We love Rebekah's OT, but are thrilled that Rebekah has made such great progress in just 18 months. When we looked back at Rebekah's goals from last April, there were things such as "clap hands" and "roll over" listed for her goals. Now, Rebekah is almost age-appropriate in every area. We are so thankful for our great therapists and their hard work with Rebekah. We're pretty proud of our little superstar, too! Rebekah has so much determination and desire to do more. She rarely lets anything slow her down!

Rebekah's speech is exploding by the minute! I'm going to attempt to list words and phrases that Rebekah says. I'm sure there are words that I'm forgetting, but even so, it's getting to be a long list!

Words Rebekah Says

mommy

daddy

zac (sounds like gac)

justin (ju-in)

aaron (sounds like "hen" without the "h")

caleb (sounds a lot like bubba)

baby

up (means up or down)

please (peese)

thank you (ga-ooo)

eye

bye

night-night (ni-night)

apple

buckle

bubble

outside (side)

drop it

got it

all done

love you

grampy (sounds like bampy)

grammy

dog (woof-woof, yep she barks for dog)

nana

papa

uncle david (day-ya)

no

look

potty (this one compliments of potty-training Caleb!)

Words Rebekah Signs

play

eat

milk

yes

no

jump

ball

cookie

please

Rebekah's receptive language is astounding. Even though she can't say a lot of the words, she can recognize most common animals (pets and farm animals), almost all her colors, and most of her toys. We're working on her choosing between two or three things. For example, if she has a doll, a ball and a book in front of her, we ask her to pick up the ball correctly the first time.

Rebekah is really walking all over the place now! She is walking at least half of the time without prompting. We are so excited that she is getting stronger and more stable. What a miracle this little girl is!

The other night at dinner, Aaron was playing with Rebekah. He was holding his nose and snorting, so this is Rebekah's attempt at holding her nose and snorting. I thought it was so funny! Then Rebekah shows off her knowledge of body parts. See? Even though she doesn't say the words for all of those things, she knows what they are and can point to them.

Better get some Saturday chores done now. Hope you all enjoy this beautiful weekend!!

Nancy

Surprise!!

Our little super star is walking!!!!

Thought that might be a nice surprise for a Monday morning! :)

Nancy

Catching Up

Wow, where does the time go??! It seems like I just updated the blog a few days ago, yet it's been two weeks since the last update! I guess there is quite a bit to fill you in on since the last update.....

Justin and Bekah sharing some hugs.

He love his little sister!

Rebekah was able to see her endocrinologist for the appointment we missed due to the snowstorm. I always dread those appointments because it means labs, and that means a bad day for Rebekah and a few lab technicians. This time, though, the lab tech was able to get blood on the second try! Dr. Amrhein is primarily checking Rebekah's calcium and phosphorus levels because of her DiGeorge Syndrome. Her calcium is great, but the last couple of labs have shown that Rebekah's phosphorus is just a bit on the high side. That can be a side effect of something really bad (like kidney failure), but in Rebekah's case, it is probably completely normal. She is still on diuretics to keep fluid off her lungs and heart, and that can cause mild elevation of phosphorus levels. Also, the DiGeorge Syndrome itself can indirectly cause high phosphorus levels since DiGeorge affects the parathyroid, which in turns affects (elevates) phosphorus levels. Bet you didn't know all that, huh?! Anyway, it is something to have checked every six months or so, but nothing to be concerned about as long as Rebekah's levels stay where they are or drop. If they start trending higher, the doctors may take a look at a few other possibilities, but we don't really think that's going to be a problem.

Zac and Rebekah. This boy will do just about anything for his sister....

except touch her bracelets and necklaces! :)

See how badly the oxygen cannula is irritating her skin?

Rebekah has had a time with her oxygen lately, and not in a good way! She has outgrown the infant cannula that she was using prior to her heart surgery, so she is now using a pediatric cannula. That's not a bad thing as far as air flow, but it's thicker and less flexible, and much harder to work with. We were able to fasten Rebekah's infant cannula with a single steri-strip on each side of her face, but that doesn't hold the pediatric cannula. We have tried a few kinds of tape, some larger steri-strips, and just tightening the tubing in the back so it couldn't slide out of place. Each of those methods left it's mark on Rebekah's face. She is so super sensitive to adhesives that no matter what we try, her face ends up with large red irritated areas. When we tightened the tubing in the back and used no adhesives, she wound up with raw sores on her cheeks where the tubing touched her skin. Fortunately, Andrea (Owen's mom) came to the rescue!! Thank you a million times over, Andrea!! Owen has these nifty little contraptions called Tender Grips (you can check them out by clicking here) to hold his cannula in place. The flesh-colored part sticks directly to the skin with a very mild adhesive, and the tubing is actually sandwiched between a clear sticky part and the flesh-colored part. No more tubing rubbing against Rebekah's cheeks! It was a very long, round-about procedure to get these pads, and I'll not bore you with the details. We finally got them delivered today, and so far, so good! I'll report after we've used them for a couple of weeks and let you know the final verdict! :)

Aaron can't be left out of his hugs from Bekah.

I have no idea why she was so serious in all of these pictures!

So all of that has been going on with Rebekah's oxygen, and then last night she had her first accident. :( Rebekah has been doing so well at pulling up on almost everything, including the kitchen cabinets. She was playing with my kitchen towels that normally hang on my oven door, and they were laying in the floor when she decided to pull up on the cabinets. You guessed it....her foot was on the towel, not on the floor when she pulled up, and she fell face-first onto our very hard kitchen floor. The cannula was pushed up her nose and she had the worst nose-bleed that I have ever experienced with any of our children. In just the few seconds from when Drew picked her up till I had wet washcloths to clean her up, her mouth was full of blood and it was dripping off her chin. It was pretty bad. All of her teeth appear to be intact, though, so we are very thankful for that! Understandably, we left the cannula off for the night and a good portion of the day. Rebekah does not need the oxygen to keep her sats up like she did prior to surgery, so it was not a risk to her medically to not have the oxygen. We felt like her poor little nose needed a break after that injury. We did put the cannula back on this evening, and she was fine with it. Leaving it off was probably more for Mommy's peace of mind than from any discomfort Rebekah had! :)

Uh oh....you caught me with my brother's toy!

The other thing we have started experiencing with Rebekah's oxygen in the last week or so is nose bleeds. Well, ones that aren't caused by injury! When Rebekah saw her pulmonologist last week, I mentioned that to her, and she asked me if Rebekah had a humidifier for her oxygen. I replied that no, it had never been offered or suggested to us. Dr. Gwinn immediately responded that we should leave it to her, and that afternoon our home health company called about fitting our concentrators with humidifiers! So Rebekah is getting nice moist air that will help her nose to not get so dried out. We are hoping that reduces, if not eliminates, those pesky nose bleeds!

I can't decide which is my favorite time of day...

breakfast, lunch, or dinner!

Rebekah had her appointment on Monday with the orthopedist. He did a quick check of Rebekah's hips and joints, then ordered a set of x-rays of her hips. The good news is....there is nothing wrong with the development of Rebekah's hips!! He didn't really have a great explanation for why Rebekah is far stronger on her right side than her left, but said it isn't due to anything structural. His advice was to continue therapy and come back to see him if Rebekah isn't walking by her birthday. Something tells me we won't need to go back to see him! :)

I redecorate Mommy's bathrooms in my spare time! :)

Rebekah is truly getting around the house at lightning speed now! She has effectively learned how to go up and down the stairs, so I am never quite sure when I walk out of the room where I will find her. It's a great problem to have, though! Rebekah is quite adventurous, and I have found her in bathrooms, in kitchen cabinets, in the laundry room, and in closets. At least she is great at entertaining herself! :) Oh, and Rebekah got stuck at the scene of the crime in the above picture. After she finished her redecorating, she sat on the little stool, but her feet got stuck because she still had shoes on (normally she can get on and off the stool by herself). She had to call "Mama" to come bail her out!

Miss Priss (as DeeAnn calls her) walking in therapy.

Rebekah is really progressing unbelievably fast in therapy now. I wondered for a while after surgery if we would ever see the "take-off" that so many people described to us after their children had heart surgery. It has taken a few weeks, but we are finally there! The Care Center loaned us a little walker (similar to the one above, but smaller) to use with Rebekah at home, and she is zipping all over the downstairs in it. She will even crawl to it and use it to walk! The big break-through came today when DeeAnn (physical therapist) had Rebekah sitting on a small stool and standing. Not only did Rebekah stand with little to no assistance from DeeAnn, she followed that up with walking about four or five steps by herself! And then she repeated the performance about half a dozen more times! I'm kicking myself for not having the camera in therapy today. I will get it on video soon, though, because when Drew got home tonight, she walked a few steps in between us. I really think that Rebekah will be walking more and more in the next few weeks as long as she doesn't have another hospitalization.

Baby Blake (one of our friends) came to visit.

Rebekah found his pacifier highly entertaining!

Several months ago when Rebekah had speech therapy, her therapist and I decided to put any further speech therapy on hold until after her Truncus repair. Since she is now almost three months post-surgery, Victoria decided to re-evaluate Rebekah's need for speech therapy. I knew that Rebekah had a pretty decent vocabulary (counting both voiced and signed words), but it amazed me as I listed what I could remember. Rebekah says or signs (or both!) over 30 words! When Caleb was Rebekah's age (she will be 19 months on Saturday), he couldn't even say 5 semi-recognizable words. I know that's not a terribly accurate comparison since Caleb had a moderate speech delay, but still - wow! The long and short of our conversation is that Rebekah scored exactly within the normal range for speech and does not meet the qualifications for speech therapy!! What a blessing! Not only the blessing that we don't need to add another therapy right now, but I am so thankful that Rebekah's speech is exactly where any other "normal" 19 month old should be! We have heard for the last year and a half from Rebekah's geneticist that she will have speech delays, articulation disorders, nasal speech, etc. and will definitely need therapy, so this was just a huge blessing for us! There is a possibility in the future that we will see some articulation problems as Rebekah begins to say more words and sounds, but for now we are rejoicing that she is exactly where she needs to be!

Rebekah loved Blake's pacifier. Seriously. If I had let her keep it,

she would have never taken it out of her mouth.

Sorry, girl! Not about to fight that battle now!

The other appointment we had this week was to Rebekah's ophthalmologist. We have been checking the ptosis (drooping) in Rebekah's right eye for almost a year now. Thankfully, it has not gotten any worse, so for the time being we are going to continue to watch it. There is still the possibility of glasses or patching in the future, but as long as their is no progression of the ptosis, it is going to be a wait-and-see game. I'm thankful, once again, for a good report! We will see Dr. Johnson back again in six months. It's amazing that July is six months away, and already it is filling up fast. Rebekah has four appointments scheduled that month already!

Rebekah walking with DeeAnn last week.

Like I said, I didn't have my camera in therapy today, so I don't have any video of Rebekah walking unassisted. This video was last week Wednesday in therapy. Rebekah is wearing "squeak" shoes, so the squeak-toy sound you hear is her walking. She wore the shoes outside last week and about drove our neighbor's dogs crazy. Thankfully they are contained, or they might have seriously terrified Rebekah while trying to get to her shoes! :)

I know this was a terribly long post, so if you made it all the way to the end - thank you! We appreciate each of you and thank you for praying for our family and our little Rebekah.

Nancy

18 Months!

It is unbelievably hard to imagine, but Miss Rebekah is already 18 months old! Where does the time go?! Rebekah had a good check-up at her pediatrician's yesterday, and we are pleased with her stats. At 18 months, Rebekah is 29 and 3/4 inches long and weighs 18 pounds and 12 ounces. That puts her in roughly the seventh percentile for height and less than one percentile for weight. That's my girl! :) Rebekah wears somewhere between 12 month and 18 month clothes. Most of the 12 month clothing tends to be too short in the sleeves and pant legs, although she is nowhere near the weight for 18 month clothing. We don't worry too much about size and just use whatever fits best!

I realized that I never posted these pictures from Rebekah's December hospital stay. So, here they are!

Rebekah had a couple of special visitors during her hospital stay. Santa came while Rebekah was sleeping (during the afternoon, not the middle of the night :), and left an adorable plush teddy bear. Rebekah loves it, of course.

Rebekah's other visitor was Landon Powell of the Oakland Athletics. He is a super nice guy, and as we talked, we realized that his son is only a couple of weeks older than Rebekah. Rebekah wasn't all that impressed, but I thought it was very sweet of Landon to spend time during the holidays to visit with kiddos in the hospital.

Rebekah is making good progress in all of her developmental areas. She is saying around 15 words and has close to a dozen signs. I love knowing what Rebekah needs/wants so much of the time. Of course we do have times of frustration when Rebekah tries to communicate something that we don't understand, but overall she does a great job of letting us know what she needs.

In fine motor skills, Rebekah is very close to being age-appropriate, thanks to the hard work of our OT, Beth! :) Rebekah can stack 2, sometimes 3, blocks, color with a crayon or piece of chalk, mash and smash play-doh, stack rings, finger feed herself and push buttons of all kinds and sizes. Rebekah can identify one body part (nose!) consistently, and sometimes she can identify eye, mouth and belly button. :) Sounds like she has all of the important parts learned!

Rebekah received two dolls for Christmas this year. This doll has a pacifier that she enjoys taking out and putting back in. She also has a doll stroller that she likes to push around the living room.

As usual, Rebekah's weak area of development is in her gross motor skills, specifically locomotion. Rebekah is doing much better, however, with standing, pulling up and cruising. She plays completely freely in all positions - sitting, standing, cruising and walking with her push toys. We are so pleased with how well Rebekah is doing just two months (to the day!) after surgery.

Daddy and the kids before opening gifts.

Rebekah's other Christmas dolly. She is so soft and cuddly, and Rebekah loves to hug her.

Rebekah went back to physical therapy today for the first time since surgery. Her PT was very pleased with Rebekah's progress. One area of concern is Rebekah's left hip. Drew and I had noticed on several occasions over the past couple of weeks that Rebekah's left hip pops when it is rotated. I mentioned that to Rebekah's PT today, and she extensively worked with Rebekah's left hip and leg. By the end of our session, she was pretty certain that Rebekah's hip is not rotating correctly. This would definitely play a part in Rebekah's late walking, her unusual style of crawling, and as we are beginning to see more of now, a little "shuffle" with her left leg when she does practice walking while holding on to something. Rebekah has an appointment with a pediatric orthopedist (add another "-ist" to our list of doctors!) on January 24th for x-rays and hopefully a diagnosis. Depending on what could be going on, Rebekah may require some different exercises or treatments during therapy, a brace to keep her hip in the right location, or worst case scenario, possibly corrective surgery. We really will not have any idea until the doctor is able to look at the x-rays and tell us what he feels is happening.

Patiently waiting at the dinner table. As a Christmas "bonus," we took Rebekah's oxygen off for a few hours at each grandparent's house on the days we celebrated Christmas with them. It gave Rebekah a little bit of a break, and it helped to not be tripping over tubing!

Rebekah wanted to help me unload the dishwasher on Sunday after church. She got as far as the whisk and decided that it made a great toy! :)

This little step-stool makes a perfect little bench for Bekah. She was so proud of getting on and off it by herself!

So tomorrow (Thursday) we will see Rebekah's audiologist for a re-check of her hearing. I am going to ask about discontinuing further re-evaluations unless we begin to see problems. Rebekah passed her "long" hearing test, so I really do not see the need to keep doing these "short" tests every six months that usually produce negative or inconclusive results for Rebekah. Originally the audiologist recommended re-evaluations to monitor hearing in the likely event of ear infections (which most kids with DiGeorge Syndrome are very prone to having). However, Rebekah has only had one mild ear infection and one possibly borderline ear infection in her entire life. I hardly consider that "recurrent" ear infections! It may seem like a small thing to only have to go every six months, but when 3 or 4 doctors want to see Rebekah every six months, plus a handful of doctors want to see her every 3 months or less, it adds up in a hurry! This month we have nine doctors visits scheduled for Rebekah, not to mention three therapies a week. It's no wonder I feel like I'm never home to catch up on laundry and cleaning! I'm not complaining about it, though, not one little bit! I will take having Rebekah at home and all of her doctor's visits rather than her being in the hospital! We sure love having that little girl in our family!

Nancy

Happy New Year!

I just realized that it has been a while since I last posted an update on Rebekah. The bad news is that I am falling behind in my blogging. The good news is that there hasn't been anything to update on! :)

January brings in a round of doctors visits for Rebekah. I know, what's new, right? :) This coming week Rebekah will see her pediatrician (for a very belated 15-month check up), her audiologist for a re-check of her ears, and her gastroenterologist for a routine visit. We are not anticipating any changes or issues at the pedi or audiologist appointments. During the GI appointment, I am hoping to discuss a plan to wean Rebekah to a much lower volume of formula through her g-tube, and ultimately, a plan to wean the g-tube use permanently. After being given the go-ahead from Rebekah's cardiologist to cut back her g-tube feeds, we have decreased the volume Rebekah gets overnight from 40 mL's per hour to 35 mL's per hour. I know that doesn't sound like much, but over the course of her 12 hour feed, that adds up to two ounces less per night. And Rebekah is definitely responding to the decrease by eating more! Like all of us, she has days when she eats more and days when she eats less, but overall we have seen an increase in the volume of food she is taking in orally. Please pray that this continues and that Rebekah continues to make forward progress in the growth department while decreasing her g-tube feeds!

Rebekah also has a pretty significant cardiologist appointment this month. On January 11 she will go in for a regular check-up and echocardiogram which will tell us if the oxygen therapy is doing anything to help lower her pulmonary hypertension. Please, please pray that her numbers have begun to come down. Pulmonary hypertension will take a toll on Rebekah's body at some point, and we would love to see those numbers lower. In the same regard, please continue to pray for wisdom for all of Rebekah's cardiac team in knowing when/how to treat her high pressure.

Also on the calendar for January is a follow-up appointment with Rebekah's ophthalmologist. We last saw him in September and decided to wait on any possible treatments until after surgery. Now we are post-surgery, and we will be discussing possible patching and/or glasses to try to strengthen Rebekah's right eye. I have noticed that her right eye has been turning inward more than before, especially if she is looking at or playing with something closer to her face. I am definitely going to be mentioning it to the doctor at our appointment.

One other thing that is not on the schedule, but will be soon is a trip to see the orthopedic doctors at the Shriner's Hospital here in Greenville. Our physical therapist has mentioned it a few times, but again, we were waiting until Rebekah was post-surgery to schedule that appointment. In the last few weeks, Drew and I have felt Rebekah's hips popping when we play with her. It is probably nothing of significance, but we want to make sure there is not a problem we need to address.

Rebekah is all cleared to begin her therapies again this week. We are excited about that! It will be good to see our therapists again. And I must admit, I'm anxious for them to see how far Rebekah has come since surgery. She is really beginning to take off in all areas of her development.

I guess that's all for now. Rebekah has been well since her last hospital visit, and we are praying that continues! For all of our SRBC family, please know that if we are not in services it is because we are trying to keep Rebekah well. Happy New Year! We love you all!

Drew, Nancy, Zac, Justin, Aaron, Caleb and Rebekah Grace

Hello, Look and Love You!

Rebekah is becoming more and more of a parrot every day. It is so fun to watch and hear Rebekah try to pronounce some words. In the last two weeks, Rebekah has started imitating close to a dozen words. We have heard:

Gac - Zac

Un-in - Justin

Uun - Aaron

Papa - Papa (always whispered, for some reason :)

Nana - Nana

Hooo - hello

Luh-loo - love you

Ah-un - all done

oof-oof - woof woof (again, whispered or said very softly)

loo - look

uh - up

Rebekah has said mama and dada for a long time now, as well as uh-oh. Rebekah also has a word for Grampy, but I can't begin to try to reproduce the sounds. :) It's uniquely Rebekah!

Tomorrow Rebekah has a geneticist appointment. I'm not expecting any surprises or new information. Basically, we check in with genetics a couple of times a year to see if there is anything we are missing regarding Rebekah's care and potential needs. We should have just a routine appointment tomorrow.

Rebekah says "hello," "look," and "love you." Listen closely amid all the din in the background. Four brothers can be loud sometimes! :)

It's time for me to recharge while my munchkins are sleeping. Have a good night, all!

Nancy

Three weeks!

I hope all of you had a wonderful Thanksgiving holiday! We definitely enjoyed ours! It has been nice to have the boys have a few days off school, but it is time for them to go back. Too many days off makes for restless little boys! We did get most of the Christmas decorations up, so that kept us busy for several hours.

Rebekah is doing very well, and for that we are so thankful. She is slowly starting to come back to the little girl that we had before surgery, which means that she is moving around and getting into mischief! :) We are pleased that she is feeling well enough to get into things, so we're not complaining!

I love my Oreo cookies!!

You can see from these cookie pictures how well Rebekah's scar is healing. It is definitely more red than it was prior to surgery, but unless you compared before and after pictures, you probably would not have guessed that Rebekah had surgery three weeks ago. The two sites where Rebekah's chest tubes were are still pretty big scabs, but we are very thankful that they did not get infected. For a few days after we got home they were quite raw and open. We very diligently slathered them with antibiotic ointment and changed the dressings frequently. While she will definitely have some scarring, I'm glad that the areas are healing finally.

Hmmm....where did my cookie go?

On the outside of Rebekah's heart scar, the skin was literally glued back together with Dermabond. It will make for a much smaller, smoother scar than if there had been stitches on the outside. Underneath her skin, there is a running zig-zag stitch starting at the top and working down to the bottom. Dr. Bradley used a material that is dissolvable, so over time the stitches will disappear.

Mmmmm....that was good! May I have seconds??

Rebekah had a good check-up with our Greenville cardiologist. He said that echocardiograms are a very subjective measure of heart function, so he can't really tell us how the function of the right side of Rebekah's heart is doing compared to how it was in Charleston. He did feel, however, that the function of the right side was at least in the low-normal range. We are all hoping that the function will improve over time.

As far as Rebekah's pressure, it has come down some according to the echo. Again, the echo is not a perfect measure, but it at least would give us an idea if it was getting drastically higher. We certainly hope that the pressures are coming down as the echo has indicated. Dr. Lucas will continue to watch the pressure here, and we will get a true reading during Rebekah's heart catheterization in March.

Daddy and his little pumpkin!

One exciting piece of information that Dr. Lucas gave us is that he intends to wean Rebekah's lasix dose over the next few months. Rebekah has been on Lasix since birth, but Dr. Lucas feels that if she continues to keep the fluid off her heart and lungs, then he sees no reason to continue the medication. On Rebekah's next visit she will have another echo and a chest x-ray. If it all looks good, we will be dropping one of her two daily doses. We will continue giving Rebekah one dose of Lasix per day for a few months till we see how her body tolerates the missed doses. If all goes well, Rebekah could be off Lasix by spring!

I love my new music toy from Aunt Aimee!

Rebekah is making steady progress back to the physical activities she was doing prior to surgery. One of the best things has been this little music toy. Rebekah loves to be a big girl and sit on the bench by herself. She has been able to maintain fairly good balance for twenty or thirty minutes at a time. There are shapes that light up and play music when Rebekah pushes them. Rebekah loves music, so this is the perfect toy for her! Dr. Lucas felt that Rebekah's stander could put too much pressure on her chest, so we are holding off on that for now. Rebekah has been in her walker several times, though, and she is taking 5 or 6 steps with someone holding on to her waist for balance.

My dimples are finally back!

For now Dr. Lucas is holding off on resuming Rebekah's therapies. He wants to give her chest a little more time to heal so that therapy will not stress or hurt her. When Rebekah has her next appointment in December, he will re-evaluate therapy based on how well she is doing.

Rebekah's piano concerto!

I finally have my computer up and running now! I downloaded over 400 pictures for the month, and I am working on editing them. When I get them done, I am planning to post pictures from Rebekah's hospital stay in their chronological order. I will be sure to link to those pictures so that you can view them if you wish. We looked back at the pictures last night and were amazed at how far Rebekah has come in three weeks. Sometimes it seems like she is slow to make progress, or that she lost some skills during her hospitalization and has not yet gained them back, but the progress she has made is astounding. We have much to be thankful for this year!!

Nancy