December Update

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

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

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

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

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

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

Christmas 2012

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

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

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

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

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

 Zachary, Justin, Aaron, Caleb,

Rebekah and Bradley

Nancy

We're Outta Here!

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

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

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

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

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

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

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

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

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

Nancy

Hello Again!

Well, it's been a while since we've been here.  We've been a little busy with some of this and a little of that.  You know, starting school, having a new baby, the usual around here.  :)

Slowly things are beginning to fall into a bit of a routine and I hope to be able to get back to blogging on a somewhat regular basis again.  I hope to post updates soon on all of the kids, including our newest!

But for now, I wanted to let you know (if you haven't heard already) that Rebekah is going back to MUSC for a heart catheterization in a week.  We will be heading down on Thursday and have to check in at the hospital on Friday morning.  This is supposed to be a "routine" catheterization, but it still comes with it's risks.  We would certainly appreciate your prayers!

 A doctor in training!

Hmmm....maybe not?!

Because Rebekah's heart has several artificial parts (the conduits that were placed last year in December), there is a high risk of scar tissue building up in and around these parts. Rebekah's surgeon wants to make sure that the scar tissue is ballooned or stented to keep the conduits from closing up.  Also, it is likely that Dr. Baker will coil off some of Rebekah's extra collaterals during the cath.

Right now we are planning on Rebekah staying overnight in the hospital on Friday night.  Usually if there is any work done in the cath lab (besides just taking measurements and pictures), the doctors like for the patient to spend one night for observation just to make sure that things are fine.

For the first time ever the boys will be spending the time we are gone with friends.  The two oldest boys will be with one family and the younger two with another family.  They are very excited about their "sleep overs!"  We will be taking the baby with us.  Please pray for safety for the boys while we are away.

Our cute little pumpkin!

Thank you all for your prayers for our family.  We will be updating from the hospital with Rebekah's progress in the cath lab.

Nancy

Rebekah's Birthday Adventure!

Rebekah is officially three now, and we had such a fun time spoiling her for her birthday!  :)  She had a very girly day and seemed to thoroughly enjoy herself!

Rebekah's day started with a birthday party with Ms. Katherine!  Yes, she literally had a cupcake for breakfast.  :)  Ms. Katherine is Rebekah's fantastic Early Interventionist, and we love her dearly!  She also brought Rebekah two books that have been read multiple times already.

After Ms. Katherine left, the boys and I headed out with Rebekah for her pampering.  First up was a trip to the nail spa to have her nails painted.  She sat so still and patiently watched as her fingernails and toenails were "pinked."  I wasn't sure if she would sit still long enough for the polish to dry, but she perched in her little chair like she had done this a million times before!

As an added birthday "bonus," the sweet girl who did Rebekah's nails hand painted a flower on each of Rebekah's big toes.  It was so cute!  Any time the boys got too close to Rebekah's chair, she said, "Stop! Move back!"  I think she was afraid they were going to get in on the action.  If she only knew how much they DIDN'T want to be a part of the nail painting!  :)

After Rebekah had beautiful nails, our next stop was Claire's to get earrings.  Originally Rebekah decided she wanted pink earrings, but when she actually looked at the earrings, so decided on a light purple flower.  When we looked at the earring in relation to Boo's ears, we decided that they were going to be too large.  So we settled for a small pair of cubic zirconia studs that are "sparkly."  Rebekah was a champ and cried for about 10 seconds and then she was over it.  Probably the tylenol and lidocaine cream on her ears had something to do with it, too!

Rebekah sat so still while the girl marked out the perfect location on each of her ears.  She even got to hold a special earring bear while she was getting her ears pierced.  As soon as they held up a mirror for her to look at her earrings, she stopped crying and was all smiles!

And here is the end result.....a very excited little girl posing for her pictures!  It has been a while since Rebekah has had professional pictures taken, and she posed like a model.  It is so much fun to have a girl! :)

I can't believe how much Rebekah's hair has grown since it was cut in December.  It is very fine and wavy/curly.  It is hard to find a style that keeps it out of her face and stays in place.  I love that it is curly, though.  It's so fun!

This is Rebekah's "monkey face."  She was being so silly during pictures, and the photographer snapped this one.  I think it's perfectly cute and so "Rebekah!"

I love Rebekah's expression in this picture and that her dimples show so well.  Rebekah has grown so much this year - physically, emotionally and meeting milestones in record time.  I just cannot express how thankful we are that Rebekah is doing so well.  We love seeing the world through Rebekah's eyes!  Thank you for all of the birthday wishes for Rebekah.  I think it was a wonderful day!

Nancy

Happy, Happy Birthday, Rebekah!!

It is almost unbelievable to think that three years ago tonight we were sitting in a hospital room in Charleston anxiously waiting for the appearance of our sweet little Rebekah.  So much has happened in the last three years, and there were certainly times when we wondered if we would get to celebrate Rebekah's third birthday with her.  But God has blessed us beyond measure and has given us so much more time with Rebekah than we could have imagined a year ago.

Even though Rebekah was a little peanut at birth, she proved over and over that she was a fighter.  She never gave up, despite all the challenges and setbacks.  Rebekah underwent her first open heart surgery at just one week old.  She recovered amazingly well from that, and three weeks later we finally got to take our sweet little girl home!

When I look back at pictures from Rebekah's first few weeks, it amazes me that she is doing so well today! I remember how hard it was to find the baby in the midst of all the tubes, wires and medical accessories that she had. Today she still has a lot of accessories - just of a different, decidedly girly, nature!

Rebekah's first year was filled with ups and downs. She was in and out of the hospital with GI issues and respiratory infections. We decided to go ahead with a g-tube surgery and nissen fundoplication. Rebekah also started physical therapy and occupational therapy to help her catch up with her development.

By the end of Rebekah's first year, she was much more stable, medically speaking.  She began crawling just before her first birthday and was walking around 20 months.  We were so excited to see those major milestones!

Even from the beginning, Rebekah has loved her bows and bracelets.  :)

At sixteen months, Rebekah had her second open heart surgery.  She had a few ups and downs during recovery, but was back home in two weeks.  This surgery repaired her Truncus Arteriosus, with a few minor adjustments for Rebekah's unique anatomy.

Rebekah sailed through her second birthday!  She grew to love the water and swimming pool and began aquatic therapy to strengthen her muscles and build endurance.

Rebekah required oxygen for most of her second year.  She was treated for pulmonary hypertension as well as low oxygen saturations.  That still didn't stop Rebekah, though!  She just pulled her tubing along behind her as she went about being a normal two-year-old.  In addition to the physical and aquatic therapy, Rebekah also began speech therapy for a variety of speech issues.

Rebekah had her third open heart surgery at two and a half.  This was a Truncus revision, as well as an attempt to provide some use of her right lung.  Rebekah's surgeon was very honest with us when he admitted that he didn't know if the surgery would produce any of the desired results, but it was the last option we had to try.  We honestly didn't know going into the surgery if Rebekah would come back home, or if she did, how much longer we would have with her.

To God's glory, the surgery was more successful than even the surgeon hoped it might be!  Rebekah's heart and lung function are better today than they have ever been in her life.  She now only needs oxygen at night and just a handful of medications to keep her heart and lungs at their best.  What a blessing we have been given!

As we celebrate Rebekah's third birthday, we are ever grateful for God's blessings to us.  Rebekah is such a ray of sunshine in our house.  Her brothers absolutely adore her and would do almost anything for her.  We are so thankful to have another year to celebrate with our little Bekah Boo!

Instead of a big party this year, we have plans for a very girly day for Rebekah. She has been asking for "my earrings" for several weeks now. We are going to attempt to have her ears pierced for her birthday. Hopefully all goes well and by the end of her birthday she will have pink sparkly earrings. :)

Nancy

Rebekah-isms

I love the stage that Rebekah is in now - trying to say "bigger" words and sentences, only mixing them up.  :)  It's so fun to hear what she's going to say next!  I wanted to post some of them before I forget what she says.

Rebekah occasionally plays with her baby dolls, bottles, and stroller.  If you ask what her baby's name is, she will either answer with "I not know" or "Rebekah Ellis."  Either Rebekah has a lot of little clones or nameless babies!  :)  Rebekah also puts her finger in her baby dolls mouth and pretends the baby bites her.  Then she jumps back very startled and says "ouch!"

If there is something Rebekah doesn't like (particularly food), she always says "I not like it" followed by whatever "it" is.  For example, we had baked beans tonight, which usually she loves.  As soon as I set them in front of her, she said, "I not like it beans."  When it was time for medicine, Rebekah told Daddy, "I not like it messin (medicine)."  Then she promptly opened her mouth and took it!

Rebekah loves to sing!  Some of her current favorites are "Jesus Loves Me," "The B-I-B-L-E," "Zaccheus," and "Deep and Wide."  Although most of the songs are recognizable, they are considerably shortened versions of the originals.  :)

When Rebekah starts to get anxious or tired, she usually asks, "Where my taggy?"  If she gets very upset or hurt, the cry becomes, "I need my taggy!"

Rebekah recently had hiccups.  When I asked her if she had hiccups, she said, "I have hiccups in my mouth!"  And then she proceeded to reach her hand as far into her mouth as it would go and pointed to her throat.

Anytime we leave the house as a family, we always drive our van.  Rebekah usually says "Bye-bye, house! Bye-bye Daddy's truck!"

We spent Memorial Day weekend at Grampy and Grammy's house and got back home late Monday evening.  Tuesday morning when I went to get Rebekah up, she asked me, "We go Nana and Papa's house now?"  She asked me the same question later in the day and I told her we had more sleeps before we could go see Nana and Papa.  Rebekah then closed her eyes for approximately two seconds and popped them back open.  She said, "I no more sleeps!"

Nancy

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

Home!!

Wow! What an eventful day!  Rebekah did a great job for her MRI today.  The anesthesiologist and radiologist were great with her, and they let Grammy (Drew's mom) and I go back with her and stay until she was asleep. They also waited to put her IV in until after she was lightly sedated so that she wouldn't feel the discomfort.  It is such a blessing to have medical personnel who pay attention to the little details. The MRI lasted a little over an hour and a half, and then we were called back to recovery.  We have been told that the doctor will call us within a couple of days with the results.

Rebekah was a little nauseated and running a very low-grade temp in recovery.  The got her to drink a sip of apple juice and watched her for a little while then said we were free to go home.  I questioned the nurse about Rebekah's elevated heart rate and temp, but she said it was likely due to dehydration (she couldn't have anything to eat or drink after midnight).  She encouraged us to give lots of fluids at home and let Rebekah rest.

When we got Rebekah home, she had a few sips to drink and then began gagging repeatedly.  Because of the Nissen fundoplication she had, she cannot actually throw up, but she gags horribly.  So we tried running some Pedialyte through her g-tube, and after about 10 minutes she started gagging again.  Her fever had gone up to 100.5 and her heartrate was up in the 160's.  After calling anesthesiology and talking with them, we were told to bring Rebekah back to the ER.

It took us about 45 minutes to get Rebekah to the hospital, and they were expecting us.  We were immediately taken back to a room and the nurses came in to check on Rebekah right away.  When they took her vital signs, her temp was up to 102.7 and her heartrate was in the 170's and 180's.  She was breathing very rapidly, she was quite lethargic and continuously gagging and retching.  They pretty quickly did a flu and RSV swab and got Rebekah some Tylenol suppositories.  After about an hour they also gave her some Zofran for the nausea.  It took a while, but when the Tylenol and Zofran finally began taking effect we started to see some improvements.  The doctor also ordered a chest x-ray, which looked normal for Rebekah (her chest x-rays always look a little abnormal, so they compare her own x-rays to each other to look for any changes).

Rebekah was finally able to take a few sips of ice water and eventually drank about 4 ounces of apple juice.  It was amazing how much difference a little juice made!  She was jabbering to the nurses, asking them for stickers and giving out hugs.  We waited for about 30 minutes for discharge paperwork and we were on our way!  We did make a quick stop upstairs to see Martin who earned an overnight stay with a drop in his O2 sats and not wanting to eat today.  If you think of it, please pray that Martin quickly bounces back to normal so they will be able to go home soon.

So after a very long day we are home and ready for bed!  Tomorrow is going to be another long day.  Rebekah has an audiology appointment at 9:00 in the morning.  Hopefully she gets enough rest to have accurate test results tomorrow!

Thank you for all of your prayers, texts and messages.  We really appreciate all of your encouragement and support!

Nancy

MRI tests and Post-MRI Update

Bekah came thru her MRI ok today. She came home with a slight fever and generally not feeling well. After I got home late this afternoon she had taken a down turn with a high heart rate and fever. So Mom, Grammy, and Bekah are headed to the ER. I will try and post updates as I get them. Please pray for our little one she has had a long day already.


-D

Sedated MRI

Just a quick reminder that Rebekah will be having her sedated MRI tomorrow (Wednesday) at 10:00.  She has been very restless and fussy the last two nights and hasn't really slept well.  We are really praying that the MRI will give us some answers.  Specifically the doctors are looking for any type of malformation of brain, brain stem or spinal column that could be causing Rebekah's central apnea.  They are estimating the procedure will last about two hours.  After that Rebekah will be moved to a recovery room to wake up.  We are hoping to be back home by late afternoon.

Rebekah has never been sedated in Greenville before, so we would definitely covet your prayers tomorrow.  I am confident that the anesthesiology team here in Greenville will take good care of Rebekah, but she is very complicated.  Please pray with us for an uneventful sedation and that the MRI will give us some kind of answers.

Nancy

Accessories and Silliness!

Rebekah has been into two things lately:  accessories and being silly!  I wanted to make sure I got some of her cutest sillies on the blog before I forgot them. :)

This is Rebekah's latest silly pose for the camera.  

It usually appears when I say "Cheese!"

"Justin hit my block head."  (said with a quivering lip and crocodile tears) Translation:  Justin hit my head with a block.

Poor girl is still not getting great sleep.

Look at the dark circles under her eyes.  :(

"(Fill in the blank with a brother's name) messing me!"  Translation:  One of my brothers just did something I didn't like, so I'm trying to tell on them.

Doesn't everyone wear boots with their pajamas?!

Mommy:  Where are your kangaroo ears?

Rebekah:  I not kangaroo ears!

M:  Where is your monkey tail?

R:  I not monkey tail!

M:  Where are your elephant feet?

R:  I not elephant feet!

M:  Where is your pig nose?

R:  I not pig nose!

M:  Where is Rebekah Grace?

R:  I not Bekah Dace!

Followed by a look of complete confusion!  :)

I love my sunglasses!

Soccer Game!

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

 Rebekah posing at the soccer field.

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

 Justin sending the ball back down the field.

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

Justin going after the ball in middle position.

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

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

Nancy

Our Prissy Tomboy

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

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

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

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

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

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

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

Nancy