Heart Cath. August 16th

The summer is coming to a close around here, and we are preparing to start home schooling next week with Rebekah's brothers. We are also heading to Charleston next week for Rebekah's scheduled heart catheterization on Tuesday at MUSC. Rebekah is scheduled for first case on Tuesday, so we have to check in at the hospital at 6:15 in the morning. She should be going back to begin the catheterization around 7:00. If all goes well, it should be a three to four hour procedure. We are anticipating that Rebekah will be spending one night at MUSC for observation, and we should be coming home on Wednesday.

Please pray for us as we travel to MUSC, about a 3 to 4 hour trip, on Monday. Also pray that the doctors would be able to find a cause for Rebekah's fatigue and come up with a plan to help her. We are also praying that the pressures in Rebekah's heart and lungs will have come down from the dangerous levels they were at in the spring.

We praise the Lord for his providing and care of our family. We trust and know that the Lord will carry us thru all of our trials.

Thanks for supporting our family in prayer and love,

Drew

Crazy Day!

Wow! Last night I was so excited that Rebekah had just one doctor's appointment today, and we ended up having four today! C-R-A-Z-Y! But that's how we roll around here, so we're pretty used to it! :)

Little Miss holding Daddy's hand...so sweet!

If you saw Drew's post earlier today, you know that we have been concerned about Rebekah's eating over the last few weeks. This is really not a new concern (Rebekah has never eaten well.), but we were seeing a definite decline in even the small amount of oral eating that Rebekah had been doing. To the point that yesterday the only thing she ate all day was a pretzel. And a small one at that.

When Rebekah got up this morning, she was chipper and perky, but by the time we got out of the shower she was ready to cuddle on Daddy's lap in the rocking chair. We could tell that she wanted to be up and playing, but just didn't have the energy. So after talking it over, I made a few phone calls to doctor's offices when they opened this morning.

Cute little girl dressed up for church.

Of course, Dr. L wanted to see Rebekah this morning, so we scheduled an appointment and off we went to our original appointment - Rebekah's biannual eye exam. We got good news there! Rebekah's eyes are the least of our concern! :) Her ptosis is about the same and does not seem to be affecting her field of vision any. The doctor did say she is mildly nearsighted and may benefit from glasses in the future, but it is just something to watch for now. It may become more of an issue when Rebekah is in school and needs to see things further away.

Mommy played with Bekah's hair.

It's two small braids ending with the bow in the back - cute!

After the eye exam we made a quick stop at Rebekah's GI office to have an "official" weight check. I was really concerned that she might be losing weight because she has not eaten much at all recently. Thankfully (due to the g-tube feedings) Rebekah has actually gained a tiny smidge of weight in the last two weeks! At least we are on top of this before Rebekah started to go negative in the weight department. That made me feel much better.

Such a sweet girl!

So after we went to GI we headed upstairs to see Dr. L. He was obviously concerned about Rebekah's fatigue and lack of eating, but as far as he can tell Rebekah's heart function has remained unchanged since her last visit. He is really hoping that the cath on August 16 will provide us with some very good answers for all of these questions. While we were talking, Rebekah was "singing" a little "la-la-la" song that she likes to do. As she was sticking her tongue out singing, I notice a raw-looking area on the right side of her tongue. I asked Dr. L about it, and he gave us a one-way ticket to the pediatrician to get it checked out. Dr. L was concerned that perhaps it was a virus of some sort causing ulcers in Rebekah's mouth.

Off to the pediatrician we went (with a short stop at home for lunch). Rebekah was so patient while Dr. D checked all over her tongue, mouth and throat. He felt her liver and asked a bunch of questions. Bottom line is that Rebekah has absolutely no signs or symptoms of having a virus. She has not had a fever, GI issues, or even so much as a runny nose! After checking Rebekah's tongue again, Dr. D concluded that Rebekah has bitten her tongue at some point (maybe more than once) and that it is swollen and she is probably unintentionally biting again and again when she tries to eat. Poor baby! No wonder she hasn't wanted to eat any food! We aren't exactly sure when the original injury occurred; it could have been any one of several times when she fell over the last couple of weeks, or it could truly have begun as an accidental biting while she was eating at some point. We won't ever know, but thankfully we are able to watch it now. Dr. D instructed us to give Tylenol or Motrin every 4-6 hours, making sure she has it before meals. Also after a little bit of discussion, we decided to try a small amount of lidocaine dabbed onto the raw area on Rebekah's tongue. It will numb her tongue so hopefully it won't hurt her so much when she eats. Dr. D hopes that we will see improvement by the end of this week. If we haven't seen a huge improvement by next week, he will probably have us check in with Rebekah's dentist to see if there is some other oral thing going on. We're hoping not!

Dr. D wanted to see Rebekah dancing.

This one is for you! :)

So that was our crazy, busy day! I'm glad not all days are like this! :) Tomorrow we are taking Justin to Rebekah's orthotist to be fitted for some AFO's (inserts to go into his shoes to support his arches) and then we are heading to Rebekah's therapy. Then home for a few hours before church tomorrow night.

Please keep praying for Rebekah's heart catheterization as you think of it. At this point, I'm just hoping for some kind of answers to all the fatigue we've been seeing. And remember to mark your calenders for the rescheduled cruise-in date of August 20; it will be here before we know it!

Nancy

Rocky Road

Rebekah is struggling again today. We have seen a steady decline in her eating since the first of July. Her fatigue has increased also. She had about 10 mins of energy this morning and then crashed. She had a not so good echo 2 weeks ago. She was pretty upset while they did the echo so we were thinking maybe the results were skewed a little because she was upset. DR. L was going to re-do the echo in month. After talking with him this morning he wants to see Rebekah today and run some tests and another echo. This is to make sure we are not missing something.

Poor girl just does not feel well.

We will post what Dr. L finds later today.

Thanks for keeping Rebekah and our family in your prayers.

D

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

Bekah enjoying spending the week at Grammy's and Grampy's. She is learning to love the pool.