Closer to answers?

First off, I have to say thank you all for your prayers for Rebekah's appointment this morning.  She did fantastic!  I was a bit concerned because I wasn't sure how long the appointment would take this morning, but Rebekah was as good as she possibly could have been!

To start with, Dr. L scheduled Rebekah for an echocardiogram.  We are so grateful that everything with Rebekah's heart looks great.  Her pulmonary hypertension remains stable (about where it was after surgery), her heart function looks good, and she is not retaining any fluid. 

Based on my description of Rebekah's symptoms, Dr. L thinks she is having bronchial spasms caused by micro-aspiration secondary to her vocal cord paralysis.  Do you want the English version now?  Dr. L thinks that despite thickening Rebekah's liquids, that she is aspirating very, very small amounts of liquid which is irritating her airways.  The irritation is causing the coughing and choking and breathing abnormalities. Since Dr. L didn't see anything cardiac related, he referred us upstairs to pulmonology.

Unfortunately, Rebekah's pulmonologist was not in the office today, but one of the other partners was able to work Rebekah in immediately.  He completely agreed with Dr. L's theory, so he made a couple of recommendations.  First, he wants us to restrict as much liquid as possible from Rebekah's diet.  That's not going to be fun at all!  Second, he wants Rebekah to have another swallow study done here in Greenville.  Two weeks ago when we discussed another swallow study with Rebekah's pediatrician, she wasn't choking nearly as much as she is now.  It seems like we are going rapidly in the wrong direction.  So he wants to get another look at Rebekah's swallowing and see what (if anything) has changed in the last few weeks.  The nurse was hopeful that we could get it scheduled for next week.  Finally, we left the office with prescriptions and samples for two inhaled medications.  This is our first experience with inhalers.  In the past when Rebekah has needed inhaled medications we have always used the nebulizer.  The inhalers are much faster than nebulizer treatments, so I'm hoping that Rebekah gets used to them pretty quickly.  She has what is called a spacer that holds the medication until she breathes it in.  It's a pretty ingenious little device.  I'll hopefully get a picture of it and how it works with Rebekah in a couple of days after she has had a little time to adjust to it.  She wasn't exactly thrilled with it tonight.  :)

Hopefully Rebekah will only need to use the inhalers for a few weeks until we can get the irritation in her airways calmed down.  She is taking Flovent in the morning and evening, and Xopenex as needed for uncontrollable coughing.  We gave Rebekah the first dose of Flovent after dinner, and she has so far been sleeping fairly well.  She has only woken up coughing twice, which is a definite improvement from last night.  We'll see how the rest of the evening progresses.

I just had to show you this hilarious picture.  Rebekah held her foot out to Aaron and said "thiss," which means "kiss."  So Aaron very sweetly knelt down and kissed her foot.  It was very cute!  And, you can't see it in the picture, but Rebekah is rubbing Aaron's hair on the other side of his head.  :)

I just cannot describe to all of you how much the boys love their sister.  She is absolutely the light of our family, for sure!  We are so blessed to have been given such a special little girl.  Thank you all for praying for her, and please continue to pray that we find some definite reasons for the cough and choking Rebekah has.

Nancy

Audiology, an injury and two big blessings!

All right, everyone, don't have a heart attack because I posted two days in a row!  :)  Don't get used to it, either!!  :)

I'll start with the blessings, since I'm excited to tell you all about them.  Then I'll get to the nitty-gritty stuff of today's appointment.  Over the Christmas season, we were given several gift cards and cash to be used for our family.  I won't embarrass those who gave, but you know who you are.  Thank you from the bottom of our hearts.  As you will see below, we combined the gifts to purchase a very, very much needed item in our home!

So after much research and deliberation, this is how we decided to use the money.  If you have been to our home in the last couple of years, you will know that our kitchen eat-in area housed a small kitchen table and a card table to seat all of our family.  We don't have a separate dining room, so to have guests over for a meal was always interesting!  :)  We certainly have not complained about our dining room seating (or lack thereof), but we felt like we really needed room for our entire family to sit at one table for meals!  We ended up purchasing two rectangular dining room tables that we have pushed together to form one large (almost) square table.  We have benches on three sides, and hope to get a set of two chairs in the near future.  This will give us seating for 10 as it is right now, or we can slide the two tables apart and seat 15 when we have guests!  Thank you to everyone who made this lovely addition to our home possible!

The other big blessing today is that we finally found thickener for Rebekah's drinks!!!  Our fantastic EI, Katherine, was such a huge help in finding out where we needed to look for it. I don't know why I didn't think to call her last week, but anyway, she got the information for me in about 20 minutes (or less!).  As it turns out, Walgreen's carries the Thick It product on their store shelves, so I simply walked in and purchased it.  Wow!! I tried some in Rebekah's milk this afternoon, but the directions on the package literally turned the milk to glue.  Ugh.  Rebekah took one sip and handed the cup back to me and asked for milk!  :)  So, I put in about half of the recommended amount of thickener, and it worked beautifully! She was able to drink her entire cup of milk at dinner tonight without choking once!!!  Thank you so much, Katherine, for all your help!! It was great to see you today, and we are all excited to see you next week!

 Yep, she's pointing to her first black eye!

Now for the injury.... It's a little hard to see in the picture above, but Rebekah is sporting her first black eye!  She was being such a big girl and helping me carry groceries into the house when she got tripped up and fell on a box of crackers.  Thankfully the corner of the box caught her just under the eye instead of in  her eye!  She cried and willingly held an ice pack on it for about two minutes, then she was off and playing again.  It's definitely going to be purple tomorrow!

The rest of the story will be interspersed with pictures of the kids helping Daddy put the tables together.  Even Rebekah wanted to help "hold" the table legs while Drew put the screws in.  She is such a good helper!!  The younger boys were all holding various pieces of hardware for Daddy, while Zac had his own job taking off the supports that were used in shipping.

Rebekah had a follow-up audiology appointment today.  She generally has follow-ups about every six months, and the last one was in early July, I believe.  I have to say, Rebekah did absolutely fantastic for her appointment today.  She was 100% cooperative, and I couldn't have asked her to try harder than she did.  The audiologist also noted, for the first time ever, that there was no fluid in either of Rebekah's ears, so we were able to get very, very accurate results at this appointment.

Oh, one quick rabbit trail, then I'll get back to the audiology appointment.  I gave the boys hair cuts on Monday, and Zac wanted his hair buzzed really short.  Poor Zac has such incredibly thick hair that I can't blame him.  Anyway, Rebekah realized that it felt fuzzy, so she is constantly asking to rub Zac's head - no joking!!  She is absolutely ecstatic when she is rubbing his hair!  Anyway, she now wants to rub all of her brother's heads, and they almost fight over which head of hair she's going to rub next.  Silly boys!

Okay, so for Rebekah's appointment today, her audiologist wanted to try a different type of testing to see if we could get a more accurate picture of Rebekah's hearing.  Typically they wait until kids are between the ages of three and four to do this type of testing, but Rebekah was being ultra-cooperative today, so the audiologist wanted to give it a try.  In the past, Rebekah and I would sit in the sound booth and sounds would come from different corners of the room.  The audiologist would judge Rebekah's hearing by whether or not she turned her head in the direction of the sound.  So you can see why it is not a clearly accurate type of testing.

Today the audiologist put something like ear buds in Rebekah's ears and was able to speak or play a sound in each specific ear separately.  Then based on whether or not Rebekah responded to the voice or sound, we were able to get a more clear picture of her hearing.

I'm not entirely sure of what the numbers mean, or what they are measuring, but the audiologist told me that a range from 0-15 was normal hearing.  Rebekah scored 10 in her left ear. Yippee!!  Her audiologist also told me that if one ear is stronger than another, the left ear is definitely the best one to be stronger because it has more to do with language.  (I'm sure there is a much more technical reason, but that's the short version that I got!  :)  Rebekah's right ear scored at 30, which is considered mild hearing loss.  The audiologist then did a different type of test with a headband-type thing that fastened behind Rebekah's right ear and measured the vibrations of her inner ear.  It appears that Rebekah's inner ear is working fine, but the middle ear is not sending the sounds all the way through so the inner ear can "hear" them.   The audiologist said that a hearing aide would definitely correct the middle ear dysfunction so that Rebekah can hear clearly in both ears.  I think I mentioned after one of Rebekah's previous audiology appointments that if she needed a hearing aide, it would probably only be through elementary school while listening skills are so vitally important.  We would like for Rebekah to have every opportunity possible to do her very best when she begins school, and even now as she is starting to imitate some of the letters and sounds with her brothers.

So the plan is to have another audiology appointment at the end of March.  We are pretty certain that we got accurate results today, but the audiologist wants to have two similar results before we order a hearing aide for Rebekah.  Assuming that the results in March are similar to the ones we got today, the audiologist will be recommending a hearing aide for Rebekah's right ear.  I'm voting for pink!  :)  If the results in March are better than today, then Rebekah will continue to have follow-up visits for a few more years to monitor her hearing.

I'm not sure why Justin looks so grumpy in this picture.  I think I may have caught him starting to talk.  He was begging to have his picture taken with Rebekah.  You can tell our kids are just so camera-shy!  :)

We are hoping for an uneventful, relaxing weekend around here.  Hopefully no injuries and no emergencies!! :)  Thank you all for your love and prayers!

Nancy