Standing.....Finally!!

We were so excited that Rebekah's stander finally arrived!! We picked it up on Friday and Rebekah has been in it several times this weekend.

After all of last week's appointments and running around, we are looking forward to a (hopefully) calm week. As of right now, Rebekah only has her regular therapy this week on Monday, Wednesday and Thursday. Yippeee!!!

Just me being cute!

Uh-oh! Look what I found!!

Since we moved into this house in 2006, Drew has taught each of the crawlers to master the stairs. Aaron was the first and Caleb had his lesson last year. Looks like it's almost Rebekah's turn for stair training!

Melanie and Rebekah in the pool

Rebekah had her pool therapy evaluation on Wednesday with Melanie. Rebekah and Melanie will be working on standing, sitting 90/90 (sitting on her bottom with her feet on the floor and balancing), squatting, standing from a sitting position, and balancing on hands and knees. Rebekah will be in the pool every other week on Wednesdays instead of her regular physical therapy. This week's pool therapy went well for the first thirty minutes.....until Melanie put Rebekah on her hands and knees. Rebekah let us all know how unhappy she was about that, and that was the end of pool therapy! Melanie has learned Rebekah's tricks; next week, hands and knees will be the last thing we work on at the end of the hour. :)

Rebekah in the stander watching her brothers play the Wii.

Look at me standing!

The stander is very heavy - much heavier than we were expecting! It is on wheels, so it is very easy to maneuver Rebekah around. There are brackets for Rebekah's feet and velcro straps to keep her feet in place. There is a pad for Rebekah's knees to fit into and velcro straps around her shins. The yellow bar around her back has a large pad on the front of it to hold Rebekah's bottom in place. Finally, the wide velcro strap goes around the middle of Rebekah's back to keep her from falling backward from the waist. There is also a head/neck support, but since Rebekah has good head and neck control, she does not need it. I will need to take the stander back on Wednesday for her therapist to fine tune a few areas, but overall it is working well. Rebekah is just on the edge of small for this stander, but it is the smallest one made. The pad for Rebekah's shins is just a bit big, so we may have to make some adjustments for it to fit Rebekah correctly. It also seems that Rebekah is not putting full weight on her feet; she seems to be resting/sitting more on the pad on her bottom. I would like DeAnn to take a look at Rebekah in the stander to make sure everything is positioned correctly.

The back of the stander.

Rebekah has been tolerating her stander quite well. Because of church today, we only had one session in the stander, but Rebekah stood for 30 minutes today in that one session. DeAnn would like to see Rebekah standing for 30 minutes twice a day by Wednesday when we go back for therapy. The long-term goal is three sessions a day for 45 minutes each time. I think in two or three weeks Rebekah will be able to do that, providing we don't have surgery in that time frame.

My awesomely cool, new sneakers - size 2!!

Rebekah and I spent a couple of hours on Saturday trying to find some appropriate sneakers for her standing. DeAnn requested that we get hard-soled sneakers with good arch support so her feet get the correct support. Has anyone tried shopping for that type of sneaker in a size 2?? Almost impossible!! We tried Stride Rite, Kid's Foot Locker, Journey Kidz, JCPenney, Gymboree, and Children's Place. The closest we came to finding what Rebekah needed was a size 3 at Stride Rite. We finally left the mall and went to Babies 'R Us and found exactly what we needed. And at less than half the price of Stride Rite! :)

I'm liking this new gadget!

Caleb, Aaron, and Rebekah

The boy are not about to be outdone in the picture-taking department! When I've gotten the camera out this week, they have been begging to have pictures with their sister. Of course, I quickly oblige!

Caleb and Rebekah

Does it count that they are just in the same vicinity at the same time? Rebekah kept trying to scoot toward the camera and Caleb kept chasing after her. I couldn't get Caleb to understand that if he sat still in one place, I could put Rebekah next to him and snap a quick picture. Out of a dozen or so, this is the best I got. :)

Excuse the bed-head; this was after my nap!!

Notice the blue-ish feet in the above picture? It's a look we're seeing a little more these days. This evening when we got home from church, we noticed the blue feet and "gills," as Drew likes to refer to the area around Rebekah's mouth. When we connected Rebekah's sat monitor, she was hanging out around 71-72 on 1/2 liter of oxygen. We bumped the oxygen up to 3/4 liter, but I am anticipating turning it down when we go to bed. Rebekah tends to have much higher sats while she is sleeping since her body is relaxed and her heart is not having to work as hard to pump the blood through her body. We'll see how she looks tomorrow when she is up and more active. Dr. Lucas had mentioned last week at Rebekah's appointment that if she needed as much as a full liter of oxygen, that he would not be comfortable with her being at home. I'm not sure how I feel about that. I agree that the potential for Rebekah to go into respiratory distress is greatly intensified by the amount of oxygen required to keep her stable, but I'm also cautious about going in to the hospital when she is not really "sick." I don't want her to pick up something else that we didn't go in with! Anyway, we're praying that Rebekah has her heart repair before we get to the point of needing a liter of oxygen!

I'm off to check on my little people and get into bed.....nights tend to be very short around here with the new school schedule. Thank you to all who have prayed for the boys as they started school. They both love their teachers and are making some new friends. The adjustment of getting back into a school schedule has really gone smoothly!

Nancy

It's Time!

Rebekah had her cardiology appointment this morning, and as we all expected, it is time for Rebekah's heart repair. I have very mixed feelings about it, but I now that we cannot put surgery off forever. There are a couple of reasons that Dr. Lucas felt were important in the decision to proceed with surgery now.

First is the obvious. Rebekah's oxygen saturations are dropping, and will continue to drop as the band gets tighter. With a lower baseline oxygen saturation, there is a higher risk for any little cold or airway distress to put her in the hospital in serious respiratory distress. I know it has been a while, but now is a great time for us to remind everyone - if you are sick, have been sick, or have been around someone who is sick, please love Rebekah from a distance!! We are trying to keep Rebekah healthy in the weeks leading up to her surgery.

Second, we are gearing up for the cold/flu/RSV season to start in another two months or so. The last thing Rebekah's doctors want to have happen is her surgery to fall in the middle of a season that is already going to be difficult for her.

The one surprise that caught Drew and I off guard is that Dr. Lucas mentioned that Dr. Bradley (the head of pediatric cardiothoracic surgery at MUSC) may recommend removing Rebekah's right lung. That was a bit of a shock for us, especially since other doctors had previously said that we should just leave it alone and let it function in a small capacity as it is right now. The potential removal would come if Dr. Bradley feels that there is so little blood flow to that lung that it would become highly susceptible to infections. Obviously, Rebekah has enough problems without having to worry about repeated, life-threatening pneumonia or infections in her weak lung. It is something that we will be praying about and talking with the doctors in Charleston about. Ideally, the surgeon will find that Rebekah's collateral arteries have grown and they will be able to restore function to her right lung, but medically speaking, that is not likely. As Dr. Lucas told us today, there are no limits on God, and we know that He is ultimately in control of Rebekah's surgery.

We should hear something from MUSC toward the end of this week or early next week about a surgery date. It looks as if it will be sometime in September, but we won't know for sure until we hear from MUSC. Until then, we continue to monitor Rebekah's oxygen levels and try to keep her germ-free! Please pray that all of the details come together for a two week (or longer!) stay in Charleston for Rebekah and I. We will continue to keep everyone updated when we have further information.

Nancy

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