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

A Short Update

For those of you who have been following Rachel's story, we ask for prayer once again. You can read the long version on Rachel's blog, but the short version is that she has developed an atrial flutter (her heart is not beating correctly) that could lead to blood clots forming. She will be having a scope procedure done in the OR under anesthesia tomorrow to check for any clots that may have potentially already formed. There are tremendous risks for Rachel to be under anesthesia tomorrow, but it is the only choice her parents are left with. Please be in prayer for their family during this very stressful time.

In Rebekah news, we will be getting test results back this week to try to determine why Rebekah's fatigue seems to be getting worse, not better. Rebekah had done really well in the months following surgery, but in the last 6-8 weeks, she has required more sleep and has generally be tiring out more easily than before. To give you a few examples, Rebekah rarely goes up or down stairs on her own anymore. She cries at the top or bottom, or comes to find one of us to carry her up or down. Also, Rebekah had been in physical therapy for one hour every other week, but three weeks ago, we made the decision to switch back to every week because Rebekah is just exhausted and laying down after 30-45 minutes of therapy. And the sleep! A usual day for Rebekah consists of getting up around 8, playing until lunchtime, going to bed for a nap between 12:00 and 1:00, sleeping until 5:00, getting up for dinner and maybe a little playtime, and going back to bed around 7:00. Now, of course, there are variations to this schedule depending on what is happening for that day, but this is pretty much the way Rebekah likes her schedule when we are home and have nothing planned.

So after talking with Dr. Lucas (Rebekah's cardiologist), Rebekah went to the pediatrician for a check-up and a full blood work-up. They are looking for anything related to thyroid, hemoglobin, mono (??!!) and several other things that I'm not even sure of. Basically, Dr. Lucas wants to rule out any non-cardiac possibilities before we start looking more seriously at Rebekah's heart as a cause for the fatigue. If all the tests come back negative, we will most likely see Dr. Lucas this week to see if anything has changed since Rebekah's last echo. If one or more of the test results show a problem, obviously we will address it once we know what it is. So I'm really hoping that something shows up in the blood work to give us something to treat. Otherwise, we may be looking at a trip to Charleston for a catheterization much sooner than we had planned.

Thanks for praying!

Nancy

Guess my short update wasn't as short as I thought it was going to be! :)