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

Someone is having a birthday!

Believe it or not, Rebekah's first birthday is right around the corner!

In lieu of gifts, we are asking that donations be made to either of the following two organizations. The first is the PCICU at MUSC, where Rebekah spent time following her birth and surgeries. Rebekah will spend more time there through the years as she has further surgeries. The PCICU is an incredible place full of dedicated doctors and nurses. We love the PCICU!

The second organization is Annabelle Baskets. Baby Annabelle was born with Hypoplastic Left Heart Syndrome and lived just two short months before returning home to Heaven. Her sweet mom, Rebecca, wanted a way to carry on Annabelle's legacy and give hope to other parents of heart babies. The baskets contain a receiving blanket, an embroidered burp cloth, a small stuffed animal, a bow for girls or a hat for boys, and a pair of warm, fuzzy socks. Rebekah was a recipient of an Annabelle Basket, and it meant so much to us!

We would sincerely love to see each of you at Rebekah's birthday party. Please be sure to RSVP by June 12 as we need to provide the restaurant with a total number of attendees.

Nancy

This and That

Hello to all! We are alive and well, contrary to what you may think! :) It is safe to assume that no news is good news and we are just keeping busy around here.

In the last couple of weeks, Rebekah has started both physical therapy and speech therapy. In speech/oral motor skills, Rebekah has mild to moderate delays. The therapist is working with Rebekah to drink from a cup (sippy cup and straw), eat a wider variety of foods with different thicknesses and textures, and add more words to her vocabulary. Right now, Rebekah says "mama" and "dada" and the therapist would like to see her add 3 to 5 new words in the next few months. We are working on it! :)

The Gecko stander with all the bells and whistles!

In physical therapy, Rebekah has significant delays in her motor skills development. The physical therapist, DeeAnn, completed the Peabody Gross Motor Skills Test, and Rebekah scored at a 7 month level for reflexes, a 5 month level in the stationary position and a 6 month level for locomotion. Rebekah will be 11 months old this week, so obviously, we have some work to do! The first thing that was done was to order Rebekah a stander. The specific one is the Gecko Upright Stander. This will allow Rebekah to practice standing on her own. Right now she is not bearing any weight on her feet for more than a few seconds at a time. We will be working up to standing 3 times a day for 45 minutes each time. The stander will have a tray for toys or finger foods. It has supports for Rebekah's waist, hips and knees to keep her in the correct position for standing. It also has wheels on the bottom so it will be easy to maneuver Rebekah around the house. The biggest reason for the stander and the urgency for using it is because Rebekah's hips may not form properly if she does not begin to bear weight on her legs. The stander should arrive sometime close to her birthday.

I'm being a cutie!

Rebekah also had a hearing evaluation in the last couple of weeks. Rebekah was such a good girl and sat very still while the audiologist completed her tests. Unfortunately, Rebekah did not pass the hearing evaluation, so we will need to repeat it in another few weeks. Preliminary results show that Rebekah has middle ear dysfunction and/or hearing loss greater than slight for each ear at normal frequencies. The audiologist said that it was possible that Rebekah had some fluid in her ears, but our pediatrician did not think that was the case. Rebekah must fail three consecutive hearing evaluations at six weeks apart in order to be diagnosed with hearing loss. Rebekah does seem to hear well most of the time, so we have not been overly concerned about her hearing. We will see what the next evaluations bring before becoming too concerned with the results at this point.

Working on eating finger foods!

Rebekah is doing well at trying new foods. We are concentrating more on thickening the foods Rebekah already eats, rather than introduce new foods with a puree consistency. Rebekah's favorite combination right now is mashed avocado mixed with mashed banana. Rebekah has also begun to drink a little bit of milk from a sippy cup, which is a huge step for her! We have struggled with getting Rebekah to drink liquids of any kind. She drinks watered-down grape juice the best, but will tolerate water. She does not like formula in any way - cup or bottle, warm or cold, so we are trying to move away from that during the daytime. Rebekah still gets her formula overnight through her g-tube and probably will for quite a while until we can work her up to enough calories by mouth.

Rebekah playing with Noah's ark animals and Aaron.

Last weekend, we made a quick trip up to North Carolina to see family. It was a very busy, but fun weekend, and we enjoyed getting to see everyone. We were also able to take Rebekah to church at Beacon Baptist, where many people love and pray for Rebekah regularly. It was wonderful to see so many friends and introduce Rebekah to them all.

With the warm temperatures outside, we have been spending more and more time outside playing. Rebekah has also been enjoying the time outside and loves watching her brothers play. On Saturday, we spent several hours outside playing soccer and baseball while Rebekah played in her exersaucer. She enjoyed our afternoon treat of Fudgesicles as well!

Rebekah ate more of Mommy's fudgesicle than Mommy did!

In other areas, Rebekah is doing great! Her oxygen saturations are remaining stable, and we are very thankful for that. Rebekah has also seemed to have a little more energy to play lately. She loves to play with her brothers, and Aaron especially seems to enjoy playing with her. Rebekah also loves music and will clap or bounce when she hears it.

Watch me playing!

Rebekah is also becoming more interactive. She regularly claps her hands when she feels that she has done something exciting. She also waves on occasion and is beginning to play peek-a-boo. Oh, and just this week, I found another tooth! Rebekah now has two teeth on the bottom, although she does not like to show them off. :)

Watch me play peek-a-boo!

This week is going to be busy! In addition to our regular therapies, Rebekah has an "official" weight check, a pulmonology appointment, pictures, and a haircut if I can get an appointment for her. I have no plans to cut it short, but it's time to have her hair shaped and evened out a bit. We will be sure to get some pictures of that! The boys have only this week and three half days next week before school is out for the summer, and we can't wait! I will be so happy to have all my kids at home for the summer!

Nancy