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

Sunday adventures

They have run lots of blood tests and x-rays. At this point they can not find a reason for Bekah's needing oxygen support outside of her heart issue. They are sending her home this afternoon on 1/2 liter of o2 and we are to take her back if anything changes. Bekah has an appointment scheduled for Tuesday with Dr. Lucas. I am not sure if he will see her tomorrow or if we will wait until Tuesday. They will be doing a complete echo and looking at her heart function along with her pulmonary band. We suspect that the echo will show us the Bekah has progressed closer to needing her heart repair. She has done a lot of growing in the last couple months. Which will cause her band to get small quicker. So we will await what Dr. Lucas has to tell us and see how we will proceed towards Bekah's next hurdle.

Please continue to pray for Rebekah and all the details surrounding her and her care.

-DE

Time flies along when you are not looking. We have not kept up with posting as we would have like to, we have all had a really busy summer. Bekah has grown and changed so much this summer. She is crawling and doing well with therapy. She actually has taken a few small steps this week while holding her hands. She is trying to pull up but lacks the strength to pull herself up yet. I am sure Nancy will post more about our summer when she has time.

This morning things changed. Bekah's o2 sats have been jumping up and down for a couple of weeks now. She was sick with a little cold, when this started so we thought maybe it was part of her cold. She is well again and still having some trouble with her sats. We were told to let her doctors know if she needed to be on oxygen again and they at that point will do some closer looking. Well this morning Her Sats dropped below her cut off level for not being on oxygen. We have done all the calling of doctors and over an hour or so our happy playing girl has headed down hill. She was very playful this morning and has continued to crash and look sick as time went on. So we are headed to the ER to see what the doctors can find with her situation. We will update as we get more info this afternoon.

We are hoping this is just a down day for Bekah and that she will bounce back quick. As always we appreciate your praying for Bekah and our family.

-Drew

Happy Birthday, Rebekah!!

Rebekah is a year old already, and I am having a hard time believing it!! She has come so far in the last year, and we are so proud of our little girl!

Rebekah in the ball pit at physical therapy.

Rebekah's beautiful birthday cake!

Uncle David with Rebekah, Aaron and Justin

Rebekah's birthday party was well attended, with many good friend and family to celebrate with us. She was spoiled rotten and spent a lot of time just watching everyone and trying to take it all in. :)

Daddy and Rebekah

Rebekah looking at her cake very intently!

What should I be doing with this???

Watching the butterflies.

Getting brave enough to touch the cake!

Trying it with a fork.

Trying to get a bite.

Mmmmm......

Rebekah has a cheering section!

Playing with Aaron and a balloon

More interested in the balloon than in the presents! ;)

Some pretty new dresses from Nana and Papa.

Some new blocks to play with!

Rebekah LOVES this butterfly!! Really loves it!

Hanging on to my new blanket and checking out my baby doll.

Tissue paper - the best present of all!

We hope you had a great birthday, Rebekah!! Mommy and Daddy love you very much!!

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