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

Postponed

Unfortunately our trip to Charleston to have Rebekah's vocal cord scoped has been postponed due to one little girl being sick.  :(  Rebekah had a bit of a clear runny nose yesterday that quickly grew into a nasty runny nose and fever by last night.  She woke up with a fever this morning and a bad cough, so we thought it best to reschedule the Charleston plans.  Our new appointment is March 9, and we hope everyone is well by then!

Please pray for Rebekah.  This appears to be the same bug that two of her older brothers had over the last few weeks.  She is happy and playing now, but has periods of horrible coughing where she finds it hard to catch her breath.  We are watching her oxygen sats carefully and will be calling the doctor if they start trending downward and not coming back up.  For now, we are resting at home and starting the antibiotics that were effective in helping her brothers get over their bronchitis and pneumonia.  We're praying that it doesn't get that far with Rebekah!

Nancy

Sleep Study Results

So, we were up bright and early this morning for Rebekah's appointment with Dr. G this morning.  If you haven't personally experienced Dr. G, he is a super energetic morning person with severe ADHD!!  I'm just kidding - I really have no idea if he has ADHD, or even if he is a morning person, but I can tell you that he has so much energy that he practically bounces from room to room.  He also changes topics with the speed of a ping pong ball.  :)  It was great, but my foggy sleep-deprived brain actually had to work to keep up with him! All kidding aside, he is very, very knowledgeable in his field, and super nice.  We really like him.

Now for the results.  Dr. G walked in with at least a 1" thick stack of papers from Rebekah's sleep study, sat down and said, "Wow, where do I even begin?"  Hmmmm.  Not the words we really wanted to hear to start off the appointment!  I'll start with the easy stuff first and then some of the more complicated.

First Rebekah has both obstructive sleep apnea and central sleep apnea.  The "events" (lingo for apnea episodes) average about 8 times an hour (for obstructive) and about 9 times an our (for central).  So, as you can see, she does not have one predominate type of apnea.  She's an equal opportunity kind of girl!  :)  If she only had one or the other of the types of apnea at the frequency above, she would fall somewhere in the "moderate" apnea range.  However, looking at the big picture, she has an average of 17 events per hour, which puts her into the "severe" apnea category.  And if that wasn't enough, she also has something called periodic limb movement disorder (PLMD), which basically means that she involuntarily moves her legs (and arms) all night.  Yes, I know; I've slept with her before.  Trust me, she thrashes!  :)

What is the next step, you ask?  The first thing we had done today was to have bloodwork done to test Rebekah's iron levels.  Apparently there are some links between low iron and PLMD in people who have heart problems.  Given Rebekah's heart history, we felt that was a good place to start.  If Rebekah's iron is low, she will begin taking iron supplements.  If not, there are some medications that can help control the thrashing so that she can rest more at night.

As far as the apnea goes, the name of the game is slow and steady.  We aren't going to pinpoint, diagnose and treat every issue in the next two weeks.  In fact, I'll be happy if six months from now we are on top of Rebekah's sleep issues!  For now we are beginning with another sleep study (oh, goody!) two weeks from tonight.  Rebekah will be evaluated using a CPAP (continuous positive airway pressure) machine which will forcefully blow air into Rebekah's nose to keep her airways open.  It will still be up to Rebekah's body to "breathe" the air in, but the machine will not allow her airways to collapse.  Big prayer request over the next two weeks is that Rebekah gets used to the mask before we use it.  It is a small, triangular shaped mask that fits perfectly over her little nose.  There are velcro straps that attach it to a small mesh cap that fits around the back of her head.  The cap and velcro help hold the mask in place.  During the sleep study, the technicians will be making many adjustments to the CPAP machine to try to get the optimal settings for Rebekah.  If the CPAP works well, great!  If not, we will be rescheduled for a trial on the BiPap (Bi-level positive airway pressure).  The BiPap would actually measure Rebekah's breathing and if she went for so many seconds without a breath, it would force a breath into her.  We will just need to see where Rebekah's needs fall and what type of treatment works best for her.

One of the pieces of good news we learned today is that Rebekah's EEG (measures brain activity) that was done during her initial sleep study did not have any red flags on it.  We haven't gotten the official neurologist's report yet, but Dr. G said if there was a huge "red flag" that he would be able to see it on the report.  We are very thankful for that good news!!

There is a little more information from the sleep study, but I am honestly exhausted and ready for bed.  I'm losing focus of what I'm typing!  :)  I will try to finish the rest of the update tomorrow, but in the meantime I will leave you with the first good video we have gotten of Rebekah since her vocal cord paralysis.  Since some of her words are difficult to hear and understand, I will post a translation below the video.  Enjoy!!

Jesus loves me ...I know

For the Bible tells me

Taggie!

Hey, shoes!

Hey, necklace!

No

Mommy, can you help me?

I need a (something that I don't understand)

Bye!

Deep and wide

Notice that Rebekah has her priorities - accessories, shoes and jewelry!  :)  I love that it so perfectly shows Rebekah's personality, even if it is hard to hear her voice.  If you really want to hear the difference, go back to this video where Rebekah sings part of Jesus Loves Me.  The difference is really amazing.  We have really gotten used to Rebekah's "new" normal voice, and every time I listen to the older video, I am just amazed at what her voice used to be.  Wow.

Please continue to pray for all of our little friends at MUSC.  There have been no significant changes today, and I know their families appreciate the prayer!

Nancy

Much needed update!

Wow! I can't believe it has been three weeks since my last post!  I would ask where time has gone, but unfortunately, I know exactly where it has gone!  :)  We've had some rounds of colds and illness (including pneumonia) for the last few weeks, and I have had very little time to do anything besides cover the basics!

Okay, so where to begin....let's start with the swallow study.  As we all suspected, Rebekah failed her swallow study last week.  She aspirated thin liquids, so she is restricted to nectar-consistency or thicker beverages.  She did well on thickened liquids and solids.  Just as part of our trial-and-error trying to figure out how to best help Rebekah drink, we have discovered a few interesting facts.  First, Rebekah does much better with room temperature or warm liquids than she does with cold.  For example, she does great with tap water, but tends to aspirate more with ice water.  So we make it a point to try to give as many room temp drinks as we can.

Rebekah loves to do "school" with her brothers! :) 

The other thing we found is that Rebekah does much, much better drinking from an open cup (with no lid) or a straw, versus a sippy cup.  The motion of tipping her head back to drink from a sippy leaves her airways wide open and unprotected, which leads to more frequent aspiration.  Using an open cup, or straw cup keeps Rebekah's head more level (or even tilted down slightly), which helps her to naturally protect her airways when she drinks.  We haven't found anything that is 100% foolproof as far as eliminating aspiration (other than restricting drinks altogether), but we have been able to greatly reduce the number of incidents that she has had.

 Sweet Caleb

Cute little story here - Caleb fell asleep on the couch one day last week.  He was so cute that apparently Rebekah felt the need to give him kisses.  Maybe it's the only time he is still long enough for her to kiss!  :)  If you think of it, please pray for Caleb.  He has been running a fairly high fever since Saturday and started coughing yesterday.  This is exactly the same way Aaron started out with what was eventually pneumonia.  We are heading to the pediatrician in the morning to hopefully get some antibiotics before Caleb gets to pneumonia.  Also, please pray that Rebekah doesn't come down with this particularly nasty bug.  Aaron was sick for almost three weeks, and he doesn't have any of the extra medical challenges that Rebekah has.

 Gotcha!

Some friends of ours took a trip to Disney in December and brought Rebekah her very own authentic Mickey Mouse!  Can we say that she is in love??!  She was absolutely thrilled with her Mickey, and it has a permanent position in her bed now.  :)  Each of the boys also received a special gift from Disney, and they were all very excited.  Thank you so much for the gifts!!

 Rebekah loves her Mickey!

So, the other big test Rebekah had since the last time I posted was a sleep study.  Boy, was that crazy!  Those of you who have lived through a sleep study know what I'm talking about.  :)  Those of you who haven't - be very, very grateful!! :)  Let's just say that it should be called a non-sleep study.  Rebekah did actually sleep for most of it, albeit extremely restlessly.  I, on the other hand, heard every moan, cry, whimper, beep and buzz along with every time the technician came in the room with a flashlight to readjust something.

 Yep, I'm cute!

To start with, there was an hour-long process of getting Rebekah all hooked up to the monitors.  She had 20-something leads on her head (read: in her hair!), another half dozen or more on her face, five on her chest, some on her arms, two on each leg, and a band around her chest and another around her stomach.  And she was supposed to sleep with all of that on!!

The leads on Rebekah's head were first coated with a rubber cement-ish type of vaseline substance.  I'm not really sure how else to describe it.  It was kind of pasty like vaseline, but was gloppy and sticky like rubber cement.  Except it wasn't permanently sticky.  Yeah, bath time that morning was loads of fun.  Her hair was so sticky and frizzed out that I could barely stuff it all into the hood of her jacket to take her to the car to go home.  I have to say, though, that the advice from the technician was great.  We wet Rebekah's hair in the bathtub, slathered on loads of conditioner, let it sit for five minutes or so, then rinsed it all out.  Then we shampooed, rinsed and conditioned again.  It really did work to get almost all of the goo out of her hair.

So what did we find out from the sleep study?  We don't find out until next Monday.  :(  The technician did tell me before we left, though, that they were able to get some good information, so that was encouraging.  We do know from our initial consultation with the sleep doctor that he felt like THE INCIDENT sounded more like central apnea than obstructive apnea.  If that is the case, then Rebekah will have a referral made to a neurologist for a consult and probably an MRI.  He also said that it is rare, but possible, for a child to have both central apnea and obstructive apnea.  We will find out for sure on Monday.

Rebekah was also evaluated by her speech therapist two weeks ago.  She usually checks in with us every six months to see how Rebekah is progressing, and we had decided to wait until after Rebekah's most recent surgery to begin therapy for Rebekah's nasal speech (a result of her high palate/larynx abnormalities caused by DiGeorge Syndrome, NOT because of the paralyzed vocal cord).  Anyway, Rebekah's vocabulary is far above average for her age, as is her receptive language.  Rebekah will begin speech therapy next week for 30 minutes/week to work on her articulation.  Just to give you an idea - her therapist was able to pinpoint some of the nasal sounds that Rebekah makes.  Rebekah's t's and d's sound more like n's.  Her b's and p's sound more like m's.  One of the words that we really pick up on this is today.  It sounds very much like noo-nay.

Ahhh...the hair is much better!  :)

That's about all for now, I guess.  We are waiting to see what the sleep doctor has to say on Monday.  We're also praying that Caleb doesn't develop pneumonia, and that Rebekah doesn't catch this illness.  Thank you for praying for us!

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

Passed!!

Rebekah PASSED her swallow study this morning!!! The time for it actually got changed twice before we got down there, so she didn't have her study until after 11:30.

They mixed some barium with some flavored koolaid, and at first Rebekah was eager to gulp it down.  Then she really tasted it and didn't want to have any more.  Can't blame her!  :)  But she was super cooperative, and she drank four different times for them to get plenty of video of her.  It's actually a super-quick series of x-rays that run together to make a short video.  So you can see exactly when the liquid enters Rebekah's mouth, as it goes to the back of the throat, and finally when she swallows.  It's pretty cool to watch!

The radiologist did see two abnormalities in the swallow study.  First, sometimes the liquid in Rebekah's mouth goes up (into her nasal passages) and not down into her throat.  We know all about this one!  It's a part of the DiGeorge syndrome since the back of her throat/vocal cords/nasal passages aren't quite "normal."  The second thing they noted is that Rebekah has a delayed swallow.  This means that the liquid goes into her mouth, to the back of the throat and then kind of hangs out there for a few seconds before it is swallowed down.  The concerning part is that during this time Rebekah's airways are wide open, setting up a perfect opportunity for aspiration.  However, this is NOT something caused by the vocal cord paralysis.  It is likely that Rebekah has always been this way, and probably will always be this way.  It is obvious that her body has learned to compensate and protect her airways.  I could tell the speech pathologist was a little hesitant to say that Rebekah was cleared for thin liquids because of the delayed swallow, but it is obviously something that Rebekah has had all her life, and she has never had an aspiration problem before.  In fact, if she hadn't had a vocal cord issue, we wouldn't even know about the delayed swallow.  So, the speech path. agreed to let Rebekah resume her normal diet, liquids and all!!  :)

So, in light of that news, we are beginning to hear the H-O-M-E word whispered around the unit.  Not sure of exactly when it will be, but things are definitely progressing in that direction.

Nancy

Saturday!

I am happy to say that Rebekah seems to be feeling better today!  :)  Or at the very least she is tired of laying in her bed and wants to be up and doing things.  She was wide awake shortly before 7:00 this morning, and we started the day with a bath and beauty treatment.  :)  Bekah wasn't crazy about taking some of the stickies off in the bath, but she seemed to relax and enjoyed having her hair washed. 

Some of you may remember from one of my posts a few days ago that Rebekah's voice has been very soft and whispery since surgery.  The first couple of days, we just assumed that it was a hoarse throat from having the breathing tube in.  After several days passed, though, we became concerned that something more might be wrong.  We talked to Dr. Bradley about it Thursday night, and he referred Rebekah for an ENT consult.  The consult didn't happen until late last evening.  We really liked the ENT that we met with last night, and he listened to our concerns about Rebekah and then decided to do a scope of Rebekah's airways to see if there was anything going on.

As it turns out, Rebekah's left vocal cord was paralyzed at some point during surgery.  It possibly has been stretched, or it could have been severed.  The nerves around the voice box go down into the chest on one side and go back up on the other side.  Time will tell whether or not the paralysis is permanent, but Dr. Bradley told us that is one of the areas that he was working in.  As careful as he is, one of the risks of open heart/open chest surgery is damage to the vocal cords.  For now we watch and wait to see what happen.  Her voice could come back in a matter of a few weeks to a few months.  If not, then the damage is permanent and we will discuss options for restoring her voice at that point.

One of the struggles we are already having with Rebekah's vocal cord loss is communication.  She can and does speak, but it is very, very soft and some sounds are just lost.  It has been a source of some frustration here in the hospital in a relatively quite room.  I think our whole family is going to have to work extra hard to make a point to listen to Rebekah.

Another complication of Rebekah's vocal cord is her swallow.  Because the nerves control the vocal cords and swallowing, there is a serious risk of aspiration.  Rebekah has been given the "okay" to have purees and solids, but nothing thinner until she has a swallow study on Monday.  So, no liquids at all for the weekend for sure.  On Monday we will find out if Rebekah can have normal liquids, or if she can have thickened liquids, or if she will not be able to have liquids at all.  It has been a rough day already since Rebekah wants to have a drink with her meals or during the day.  To make up for the lack of fluids, we are giving Rebekah three bolus feeds of Pedialyte during the day.  We will find out on Monday if we need to continue that at home, or if Rebekah will be cleared for liquids.

Rebekah has still been in a fair amount of pain today, despite the fact that we have continued her pain medications.  She is also scratching her incision relentlessly.  She has been getting Benadryl as often as she can have it, but she still managed to scratch off the top half of her steri-strips covering her incision.  Bek's nurse had to come in and re-bandage Rebekah's incision.  We can't keep up with what that girl will think of next!

Look at who is up and walking!!  :)  Rebekah has wanted to "go bye-bye" off and on today.  So, a couple of times today we took walks up and down the hall.  Understandably Rebekah is still a little unsteady on her feet, but we are thrilled that she is doing this well!

Rebekah has another chest x-ray ordered for tomorrow morning.  The x-ray she had early this afternoon still looked "wet," so there is some fluid that she still needs to get off her lungs.  Sitting up, moving around, walking, all of these things will help Rebekah get the extra fluid off.  Also, she is still on an increased dose of Lasix three times a day.

So today has been a little rougher as we've had to deal with some of these little complications, but overall Rebekah is still doing so well.  We are so thankful that God has given Rebekah to our family!  I haven't heard any updates on baby Jackson today, but please continue to pray for Jackson and his family.

Nancy