Weight gain??

Miss Rebekah is plugging along. She is very busy with lots of doctor appointments and therapies. She seems to be responding well. This week she was removed from some of her medications. This has caused her to be much more awake and alert. She follows her brothers everywhere with her eyes. She likes to cuddle and play with her brothers. She has begun to make lots of faces and started a little bit of noise or chatter. I put her in her chair so she could watch the boys eat their breakfast before school the other morning, and she ate it up with Justin. He kept talking and goofing for her and she cooed and tried to giggle at him.

Rebekah did have a GI check up this week. She is gaining a little weight, but still not enough. They have increased her intake to 95cc's a feed. We are trying to fatten her up. I think she is now over 9lbs. We are hoping to see some bigger progress this week or we may have to go back to continuous feeds at night on a pump. We will see.

Mom and Bekah are returning to MUSC to have her button replaced with one that is not so cumbersome on the 18th. Hopefully this will be our last trip for a couple months. The next trip should be the heart cath. to determine if Bekah is ready for surgery.

Looks like we should be able to have a somewhat quiet and relaxing Christmas all together. I think that is about it for updates for now.

Thanks for your prayers and continued support for our little Rebekah Grace.

D

Dedication Day!

Rebekah has had a busy week and a half! Although she still has a little bit of a runny nose, her cold seems to be pretty much gone. Now if we could get her brothers' colds cleared up, we may be back to normal! :)

Rebekah dressed up for her dedication.

Last week Sunday was Rebekah's dedication at church. She was a very good girl and slept through most of it. Pastor Chuck did a great job, as always, and Rebekah was very still and quiet as he prayed for her.

Listening to Pastor Chuck talk about Rebekah's special verses.

Rebekah also met with her geneticist, Dr. Rogers, last week. Most of what he said we had been told before, but he did explain one thing that we hadn't been told before. Rebekah has a short palate which could mean some speech problems in a few years when she starts talking. The good news is that any problems should be correctable either with speech therapy or surgery or both.

So cute!!

Rebekah has qualified for several therapies which she receives at home. We are working hard to catch her developmental milestones up to where they should be for an almost four month old. She is now grasping on to toys or other small objects, holding her head up a little better and trying to roll over. We work hard at playing with Rebekah and so do her brothers! :)

Nancy

Sick???

Looks like we maybe are experiencing our first cold. Bekah has done so well to dodge all the rest of us being sick over the last month. We will see how this goes. Hopefully its a minor cold and won't require going to the doctor's.

She all so has her first occupational therapy evaluation this morning. Such a busy little girl for only 4 months old and so demanding also, she insists that her therapists come to her. Just no time to go out when you are sleeping, eating, keeping up with your brothers, and of course have to make time to play and snuggle with Daddy. What's a girl to do.

D

Latest Updates

Hello again! I know many of you have been asking and waiting for an update, so I will try to oblige all of Rebekah's adoring fans. :)

Practicing holding my head up.

Rebekah has been doing very well with her g-tube. Actually, she is doing so well eating by mouth that she has hardly used the g-tube at all. Several people have asked why in the world we chose to have the surgery done when it seems that Rebekah did not need it. The short answer is that in order to do the Nissen procedure (wrapping the top of the stomach around the esophagus to prevent reflux) we had to also do the g-tube. According to Rebekah's surgeon, Dr. Hebra, about 95% of children who have the Nissen procedure do not return to eating by mouth for about 3-4 weeks. Therefore, they will not do the Nissen without the g-tube. Even though Rebekah is not using the tube much at all, it will come in very useful when she has her next heart surgery. Rebekah will not have to have quite so many IV's for her next surgery because the doctors will be able to use the tube to administer medications and fluids. As far as the Nissen, it has been wonderful! Rebekah has not thrown up even once since her surgery, and we are very excited about that!! As you might imagine, it is wonderful to put Rebekah in a set of clothes for the day and actually have her still in them at the end of the day. :)

My temporary g-tube

In developmental news, Rebekah is working at holding her head up more on her own, although nowhere near an average three and a half month old. Rebekah has discovered her hands and spends a lot of time studying them when one or both of her hands passes in front of her eyes. It seems that Rebekah has given up on the pacifier in favor of the two middle fingers on her left hand. She is getting pretty quick at finding those fingers when she is ready to go to sleep or is hungry.

Trying out the bumbo chair for the first time.

Rebekah is scheduled to return to Charleston on Nov. 11 to have her g-tube changed for a more permanent mic-key button. That one will be flush with her skin and will not have the tubing attached. When we need to use it, we will lock in the tubing to use the button and then detach the tubing when we are done. There will be less risk of Rebekah (or Caleb) pulling on the tube and pulling the button or tube out. It will also be easier to hide in her clothes than the one she has now.

Daddy and Mommy love this smile!

If you missed the original post here, remember that you are all invited to Rebekah's dedication on Sunday at 10:30. We'd love to see you there!

Nancy

Back in the routine

Not much to report today except that we are struggling to get back into a routine since coming home from Rebekah's surgery. It seems that the boys and I have come down with colds, so we are not feeling the greatest, either. Please pray that Rebekah will escape our cold germs. We are trying hard to wash and keep things even more clean than usual, so hopefully we can avoid a cold for Rebekah.

Rebekah has been slowly recovering from her surgery. While we would love to be holding her more, it seems to cause Rebekah a good deal of pain to be held. So for right now Rebekah is in our pack 'n' play in our living room. We have been letting her lay still in there and even feeding Rebekah's bottle to her while she is laying still. Hopefully the pain will begin to ease in the next couple of days.

Have to run and get some laundry done. You all have a wonderful weekend!

Nancy