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

The Scoop

Thank you to everyone who came out to Lil' Rebel for the cruise-in tonight. Even though it was postponed, we had a great time visiting over dinner with many of our friends.

We were asked several times how the cruise-in works, and how come it was postponed. I really had no idea, but Drew asked some questions and now I can give you an answer! :)

One of my favorite pictures of Rebekah. So sweet!

Each of the entrants of the cruise-in (the people who enter a car, truck, bike, etc.) will have a bucket to collect tickets. People come and purchase tickets to put in the bucket(s) of their favorite vehicle(s). The buckets with the most tickets will be declared the 1st, 2nd and 3rd place winners, respectively. The top three winners will each receive a large (and I do mean LARGE) trophy stating 1st, 2nd or 3rd place and the words "In honor of Rebekah Grace Ellis." The trophies are a beautiful pink/purple shimmery color in honor of Rebekah. The money that is collected from the sale of the tickets will then be given to Rebekah to use for medical expenses or other expenses related to her care.

Pretty bracelet and painted toes!

So, with that explanation, it made sense for them to postpone the cruise-in. Helen (one of the owners) wanted to raise as much as possible for Rebekah. With the threat of severe weather, she had several entries cancel, and she knew that many others would not come. So she decided to postpone to a later date and hopefully better weather.

L to R: Justin, Caleb, Aaron, Zachary

and of course, Rebekah!

We hope that many of you will be able to come to the cruise-in rescheduled for August 20. I'm excited about seeing the old cars, and we enjoyed the few that did brave the weather to come out tonight. The food was good, the fellowship was great, and we had a wonderful time. Thanks again to all who came out tonight!

Nancy

P.S. The pictures were done a couple of months ago by a good friend of ours. Her website is http://www.mazzaferrophotography.com/. If you look closely, you will find pictures of Rebekah and Caleb in her galleries. :)

Rebekah

Isn't she beautiful???!

We're Home!

Thank you so much for all of the prayers, phone calls, texts and Facebook comments today! We are so blessed by all of our friends and family who care for our Rebekah!

Rebekah is standing!! She loves the pool!

Another favorite...music!

I wish that I could say Rebekah is doing much better, but she isn't. On a good note, she's not any worse, either! :) Rebekah continues to be on 1/2 liter of oxygen, and is resting comfortably with oxygen sats in the 70's. As Drew posted earlier, Rebekah's sats dropped rather quickly this morning into the lower 60's, and within an hour she went from happy and playing to very tired and lethargic. Several phone calls with the on-call cardiologist, and we were on our way to the Children's ER. Once we arrived at the ER, Rebekah had chest and abdominal x-rays, an EKG, and a panel of bloodwork. Thankfully, everything looks normal, meaning there is no infection or viral illness. It is the general consensus that Rebekah is outgrowing the band on her left pulmonary artery, and she is close to needing surgery to repair her heart. Rebekah's cardiology team had originally predicted that the surgery would not be necessary until next spring or summer, but Rebekah has grown rapidly (for Rebekah, anyway!) in the last three months. The growth is putting increased demands for oxygen on her heart and lungs, and it is becoming harder for her heart to pump an adequate amount of blood through that pulmonary band. We will get final confirmation of that diagnosis on Tuesday, but all indications are pointing toward surgery at this time.

Rebekah all dressed up for church before we had to leave for the ER.

Smiling for the camera! :)

That's the most recent news....now, let me try to tie up some loose ends from the last month. Rebekah had her final hearing evaluation done, and the result is no hearing loss!!! We were very excited to hear that! She will continue to be evaluated once every six months for the next year or two to make sure that fluid is not building up in her ears, but we should have no worries about her hearing. Rebekah's most recent visits to both her endocrinologist and her immunologist went very well. All of her labwork looked great, and the doctors were very pleased. We are certainly not out of the woods with the complications of DiGeorge Syndrome, but things are looking very well right now. This is a huge relief to us, especially if we are heading into surgery soon!

Great-grandma sent Rebekah a sock monkey and hand-made mittens.

Rebekah loved the monkey.....

.....and promptly used the mittens for a teething ring!

I promise she will actually wear them someday, Grandma!!

Rebekah loves to swing!

Someone has some cute dimples! :)

A perfect pouty face. Must have learned that one from Daddy......

Thankfully this is the face we see most often!

In developmental news, Rebekah is progressing in leaps and bounds! She has temporarily "graduated" from speech therapy for now. She will see her speech therapist on a consultative basis until she is closer to the age of two, when formal speech therapy can begin. As far as her feeding skills go, Rebekah has shown enough progress to not need therapy any more!! In occupational therapy, Rebekah is working on stacking blocks, coloring and pushing/pulling small levers, knobs and beads to strengthen her hands and arms. And she has also had some fun time with Play-Doh! Believe it or not, we still have not received Rebekah's stander, but I was promised that it shipped last week. We'll see if it comes in this week! Rebekah is doing well standing with someone supporting her. She is also crawling in her own way; we like to call it bunny hopping! :) This week we are adding a new therapy - aquatics!! The therapy center we go to has a pool for aquatic therapy, and Rebekah's physical therapist believes she will make great progress in the pool. So we will switch between regular "dry" physical therapy one week and aquatic physical therapy the next week. Rebekah loves the water, so I'm sure she will enjoy the pool.

All five monkeys! Beth, that is the little wagon you bought for Rebekah that came with sand toys. She actually rides around in it with her brothers pulling her. :)

Guess what?!!! I'm standing....with a little help! ;)

This movie shows off a little of Rebekah's "bunny hop" crawling. Caleb was watching the screen with me and keeps chattering about "Bekah" and "pictures." At the end, you can see Rebekah squinting and blinking. That's her "camera face." Anytime I pull out the camera, she does this cute squint/blink thing.....in anticipation of the flash, maybe? I think this girl has been photographed a lot.... :)

Thank you all again for your prayers for Rebekah and our family. Please pray for wisdom for Drew and I this week as we watch Rebekah closely, and for the doctors as they evaluate her heart on Tuesday. Also, please keep our boys (especially Zac and Justin) in prayer as they begin a new school year tomorrow.

Nancy

Our 200th Post!

Can you believe that Rebekah's birthday is almost here??? We are having a hard time convincing ourselves that it has really been that long! Rebekah has grown and changed so much since then, and we are so very thankful that God has trusted us with her.

Rebekah made her first trip to the pool on Saturday, and she loved every minute of it! She kicked and splashed and played for a while, then she kicked back and relaxed. It was such a fun time! The boys all enjoyed swimming and playing in the pool, as well.

Check out my super cool shades! I'm ready for swimming!

Rebekah is making great progress in her weight gain. She had a doctor's appointment today and is now up to 15 pounds. That's right! 15 pounds!!!! Rebekah has also grown an inch and is now 27" tall. All of that eating Rebekah is doing must be doing some good! We have really seen an increase in the amount of food Rebekah is eating each meal as well as more variety in textures and flavors that she will eat. I am very excited about Rebekah's eating progress!

This is pretty fun!

I am very happy to say that Rebekah had a good report from her cardiologist today. We had been noticing that Rebekah was more fatigued than usual during eating and playing. Sometimes Rebekah lays her head down on the floor or on her high chair in the middle of whatever she is doing. After getting the results of Rebekah's echocardiogram today, the doctor feels that Rebekah's heart is still stable. Indirectly, Rebekah's heart is responsible for her fatigue because it is working so much harder than a normal heart in order to pump blood to her heart and lungs.

Really, why wouldn't I want to put it in my mouth??

So, because Rebekah's heart is working "overtime," she is going to get tired with more activity. That makes us feel a little better knowing that this is going to be normal for Rebekah until her heart repair. The one thing we need to keep an eye on is Rebekah's oxygen saturations. When they begin to trend downward and stay down, then we will be heading toward surgery.

Life doesn't get any better than this! :)

Next week is a big week for Miss Rebekah. In addition to her regular therapies, Rebekah's repeat hearing evaluation is Tuesday. We are going to have her ears checked for fluid at the pediatrician's office on Monday so that we know before the hearing exam whether or not she has any fluid in her ears. Since the audiologist felt that fluid was the cause of not passing her first test, we don't see a reason to retest if there is still fluid present. If the fluid is still persistent, we may end up with an appointment to the ENT to discuss tubes to drain the fluid. Hopefully we won't be having that discussion! :)

Swimming makes me sleepy!

Isn't Rebekah so cute?!!! When we came home from the pool on Saturday, Drew put her on the floor to play for a few minutes while we got the boys started on their showers. When we came back downstairs, Rebekah was fast asleep on the floor.

That's the news for now! We hope to see many of you at Rebekah's birthday party!

Nancy

Playing!

Sometimes it gets boring just laying in a hospital bed, so a girl's got to come up with something to do! Rebekah loves, loves, loves to play with her feet! Unless she is sleeping, you are guaranteed to find Rebekah playing with her toes, or chewing on them. :)

Rebekah playing with her toes and talking to me!

We have been making good use of our time, and working on some of our therapy goals. Mrs. Beth, we have been banging two objects together, no problem! We also bang them on the crib rails, on our toes, on our head and get them in our mouth! Just wanted to let you know in case you thought Bekah wasn't an overachiever!

Yep, I have the two-toy thing down cold!

Rebekah's hair is growing at an unbelievable rate! In doing some research this week (unrelated to hair growth, by the way) I found that kids with DiGeorge often have copious amounts of hair. I think Rebekah fits that picture!! We will have great fun with bows, pigtails and braids in our future. :)

Rebekah usually has a smile for the camera.

And, now, for the big surprise.....Rebekah is starting to sit on her own for a few brief seconds!!!!!! She has been doing very well sitting with me just giving a small amount of support, so I let her go to see what she would do. She actually sat for quite a few seconds, but by the time I grabbed the camera she flailed her arms out in a final balance before toppling. I'm so proud of our little fighter!

See, I can do it!!!!!

As far as all things medical, Rebekah is really about the same. She is having a bit more upper respiratory congestion (stuffy nose and sneezing) and more coughing today. Her lungs continue to sound excellent, though, so that is really good news.

I wish I could report that the diarrhea was getting better, but I can't. The GI doctors have run a host of tests, and unfortunately, most of them take days, not hours, for results. At the moment, Rebekah is not getting any breastmilk just in case the cause of her problems is a dairy protein allergy. I am still pumping and freezing the milk for use later. There is one more test that the doctors want to check and that one will be done on Monday. I don't know how long it will take to get the results back. All of these tests are checking for the amount of nutrients that Rebekah is absorbing. That will tell the doctors a lot about what is going on and how to treat it. Please pray for accurate results from all of this testing so that we know where to go from here.

Sitting up with the help of my toys!

That's the extent of the news from here. We're enjoying the beautiful sunshine after so many snowy/rainy/cloudy weekends in the last month or so.

Nancy

Pictures!

Rebekah somewhat grudgingly cooperated with Mommy's picture taking. We did get some cute ones out of all of the ones we took. Then she promptly settled in with Daddy and took a nap! :)

Just let me sleep!

I love the butterfly and baby toes.

Priceless!

Nancy