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

January!

Hi!  Here's the long-awaited update, and I have no excuse except that I've been busy enjoying being at home with all my family in the same place!  :)

Drew, Rebekah and I did make it to North Carolina to be with the boys and grandparents for Christmas.  The boys were thrilled to see their baby sister!  We arrived right at lunch time on Christmas Eve, and had barely carried our luggage inside when Rebekah fell and hit her head on an end table.  It bled, and bled, and bled.  We ended up taking her to an urgent care center where they put two staples in her head.  That was not a fun experience, but it was better than stitches!  I never could get her to hold still enough for a picture of the damage, but trust me, there are two staples under that big red bow!  Our pediatrician took them out last week in his office, and Rebekah didn't even cry!

 This was an attempt at getting a good 
Christmas picture of the kids together.

It was good except for Caleb deciding to
 pinch his nose with his fingers.

There's always one in every bunch!

So we had a very enjoyable time with friends and family for Christmas, and even took Rebekah to church at Beacon Baptist to see our friends there.

 Not sure what they are all looking at, 
but clearly I lost their interest! :)

Caleb, Justin, Rebekah, Zachary, and Aaron

 Is one out of five looking at the camera a bad record?!

 Aaron and Caleb

Rebekah had her second post-surgery follow up appointment with Dr. Lucas yesterday.  He is quite pleased with how Rebekah is doing from a cardiac standpoint!  Her heart function is looking great, and her pressures are staying about where they were when she came out of surgery.  Overall we couldn't be more pleased with how she is doing!

 Another attempt at getting a picture of all the kids. 

Zac decided he was tired and went to change clothes 

before I had a chance to drag him into the picture! :)

As far as a non-cardiac standpoint, Rebekah has a few hiccups we've been working through.  And, yes, she has been getting hiccups quite frequently - three or four times a day! They are so cute with her squeaky little voice!  :)

The biggest obstacle we are working on right now is getting a thickener for Rebekah's drinks. If you remember, Rebekah passed the swallow study at MUSC, but had a delayed swallow that they felt has always been unique to her.  Well, since we've been home, she has been choking and coughing with almost every liquid we have tried to give her.  Water, apple juice, grape juice, soda, and usually milk will all make her choke and cough unless she takes very, very tiny sips.  And it's almost impossible to reason with a 2 and 1/2 year old and make her understand that she needs to take very tiny sips.

 Justin, Rebekah and Aaron

After talking with Rebekah's pediatrician, we have decided that Rebekah needs to be drinking thickened liquids (honey consistency) for now, at least until we see some improvement in her vocal cord.  Dr. D didn't see any reason to repeat the swallow study since we know that obviously Rebekah is choking on her drinks and the swallow study will not change the method of treatment.  The decision was the easy part.  It has been crazy to try to find the thickener that she needs!!  Our pharmacy (Target) has not been able to get any for us yet, although they are still working on it.  Rebekah's DME (Apria) could possibly get it, but it's not covered by Medicaid, and they won't outright sell it to us.  Grrrr!!!!  Has anyone else had to get thickener for their child?  If so, what is the most cost effective way to purchase it? I did some online shopping and did find some, but I'm not really sure I want to invest in a large container/canister/packets until we find what works best for Rebekah.  I would love to hear from anyone else who has used this.  What worked best for you?  Favorite brands? Gel or powder?

 See, I told you there's one in every bunch.

Caleb just had to stick that balloon on the end of

his nose right before I snapped the picture. Nice.

Rebekah is still wearing her oxygen at night, and probably will be for a while.  Dr. L was ready to tell us that she could lose the oxygen altogether, but when I told him her sats dropped at night when the cannula happens to slip off, obviously that changed his mind.  :)  From what he can tell, there is no cardiac reason for Rebekah to be needing the oxygen at night, so it's time to look for another reason that she has become oxygen-dependent.

 Can you tell they've had enough of the camera?!

If you've been reading the blog for about a year (or more!) you might remember that we have discussed the possibility of Rebekah having some form of sleep apnea for quite a while now.  Dr. L said that it is now time to refer Rebekah to our local pediatric sleep medicine doctor for an evaluation and likely a sleep study.  It is possible that Rebekah has always had some sleep apnea, perhaps mild, that has been magnified by the damage done to her vocal cord.  Either way, Rebekah will be having an evaluation with Dr. G sometime in February to see if there is something else that we can be doing to help her sleep better.

 Bekah says enough of these silly boys! 

I'm out of here!!

Dr. L did not see any fluid on or around Rebekah's heart and lungs in her echo yesterday, so he told us to drop one of Rebekah's doses of Lasix.  She had been taking Lasix twice daily, but now we are only giving it in the mornings.  Yay!!  If Rebekah's next echo (in February) looks the same, he will give us the okay to drop Lasix altogether!!  That will be the first time ever in Rebekah's life that she will be off Lasix.  Wow!

This last picture deserves a paragraph all it's own.  Justin and Rebekah are bundled up to head out to Rebekah's doctor's appointments yesterday.  And, yes, it was COLD here - it was 22* when we were leaving!  (Okay, now that I look at the picture, maybe they were bundled up a little excessively! :)  Anyway, the hats and scarves are compliments of Grammy, and the mittens were made by Great Grammy in New York.  Thank you, Great Grammy!!  They fit perfectly and we all love them!!

Tomorrow morning Rebekah has an audiology appointment to recheck her hearing.  She has them every six months and will continue having them at least until she's close to her fourth birthday.  I'm glad to know that she is being followed by so many good doctors!

Nancy

2011 Snow Storm!

We are enjoying a week of snow days from school thanks to a snow storm that dumped 7.5" of snow followed by 0.25" of ice on us Sunday night and Monday. We are enjoying the time off from school to play together and enjoy being home.

Because of the snow, all of Rebekah's appointments this week have been cancelled. So, we have not seen her cardiologist to have an echo to see if the oxygen therapy is helping her high pressures. As of tonight, it was reported that cardiology will open at noon tomorrow. I am planning to call as soon as they are open to reschedule our missed appointment.

I see you pointing that camera at me!

Last week Rebekah had an audiologist appointment to recheck her hearing. If you read the last post, you may remember that I was going to suggest to the audiologist that we stop checking Rebekah's hearing every six months. However, I learned at Thursday's appointment that the two types of tests that Rebekah have had are different. The "long" test that Rebekah passed tested her auditory nerves. We know that Rebekah's auditory nerves are fine. The short test, however, tests the middle ear; basically, it measures the vibration of the eardrum and how well Rebekah actually receives sound into her ear. So even though Rebekah's auditory nerves are fine, she is not receiving sound into her ear as well as she could. Rebekah's loss is in the slight to mild range right now, with her right ear testing very close to the mild/moderate range. If Rebekah falls into the mild/moderate range, she will be fitted for hearing aids for at least a few years. Rebekah will continue to have her hearing tested every six months.

Daddy's first dance

Rebekah also had a gastroenterology appointment on Thursday last week. The week of Christmas we had reduced Rebekah's overnight feeds from 40 mL's an hour to 35 mL's an hour. Rebekah maintained her weight even with the reduction in feeds, so we were given the green light to reduce by another 5 mL's an hour. It doesn't sound like much, but every time we drop 5 mL's, Rebekah gets 2 ounces less of formula overnight. It has already made a big difference in her appetite, and we are seeing Rebekah eat much more than she was a month ago. The plan is to continue to check Rebekah's weight once a month and reduce her feeds by 5 mL's each month that she maintains her weight or gains. Our GI doctor said a conservative weight gain for Rebekah should be 4-5 ounces each month. So as long as she meets that goal, we continue to drop feeds. We are hoping that Rebekah will be off, or very close to being off, her overnight feeds by her birthday. We will take it one step at a time, though, and go as slowly as Rebekah needs to.

Rebekah loved sledding!

This week Rebekah missed her endocrinology and cardiology appointments, as well as two of her therapies. While it has been nice to have a break from the constant busy schedule, I am a little nervous about fitting in those two appointments into the next two weeks, which were already busy enough! It will work out, though. It always does. :)

After a while, we gave up sledding and just sat in the snow.

Rebekah kept patting the snow with her mittens.

If you would like to see more pictures of the boys and Rebekah playing in the snow, click here to head over to our family blog. We really enjoyed our snow days!

Yes, Rebekah really is in there somewhere! :)

Thank you all for your prayers for Rebekah. So far she has remained well, and we are thankful for that! Please continue to pray that Rebekah stays well and that her pressures will be better when she has her next echocardiogram.

Nancy

18 Months!

It is unbelievably hard to imagine, but Miss Rebekah is already 18 months old! Where does the time go?! Rebekah had a good check-up at her pediatrician's yesterday, and we are pleased with her stats. At 18 months, Rebekah is 29 and 3/4 inches long and weighs 18 pounds and 12 ounces. That puts her in roughly the seventh percentile for height and less than one percentile for weight. That's my girl! :) Rebekah wears somewhere between 12 month and 18 month clothes. Most of the 12 month clothing tends to be too short in the sleeves and pant legs, although she is nowhere near the weight for 18 month clothing. We don't worry too much about size and just use whatever fits best!

I realized that I never posted these pictures from Rebekah's December hospital stay. So, here they are!

Rebekah had a couple of special visitors during her hospital stay. Santa came while Rebekah was sleeping (during the afternoon, not the middle of the night :), and left an adorable plush teddy bear. Rebekah loves it, of course.

Rebekah's other visitor was Landon Powell of the Oakland Athletics. He is a super nice guy, and as we talked, we realized that his son is only a couple of weeks older than Rebekah. Rebekah wasn't all that impressed, but I thought it was very sweet of Landon to spend time during the holidays to visit with kiddos in the hospital.

Rebekah is making good progress in all of her developmental areas. She is saying around 15 words and has close to a dozen signs. I love knowing what Rebekah needs/wants so much of the time. Of course we do have times of frustration when Rebekah tries to communicate something that we don't understand, but overall she does a great job of letting us know what she needs.

In fine motor skills, Rebekah is very close to being age-appropriate, thanks to the hard work of our OT, Beth! :) Rebekah can stack 2, sometimes 3, blocks, color with a crayon or piece of chalk, mash and smash play-doh, stack rings, finger feed herself and push buttons of all kinds and sizes. Rebekah can identify one body part (nose!) consistently, and sometimes she can identify eye, mouth and belly button. :) Sounds like she has all of the important parts learned!

Rebekah received two dolls for Christmas this year. This doll has a pacifier that she enjoys taking out and putting back in. She also has a doll stroller that she likes to push around the living room.

As usual, Rebekah's weak area of development is in her gross motor skills, specifically locomotion. Rebekah is doing much better, however, with standing, pulling up and cruising. She plays completely freely in all positions - sitting, standing, cruising and walking with her push toys. We are so pleased with how well Rebekah is doing just two months (to the day!) after surgery.

Daddy and the kids before opening gifts.

Rebekah's other Christmas dolly. She is so soft and cuddly, and Rebekah loves to hug her.

Rebekah went back to physical therapy today for the first time since surgery. Her PT was very pleased with Rebekah's progress. One area of concern is Rebekah's left hip. Drew and I had noticed on several occasions over the past couple of weeks that Rebekah's left hip pops when it is rotated. I mentioned that to Rebekah's PT today, and she extensively worked with Rebekah's left hip and leg. By the end of our session, she was pretty certain that Rebekah's hip is not rotating correctly. This would definitely play a part in Rebekah's late walking, her unusual style of crawling, and as we are beginning to see more of now, a little "shuffle" with her left leg when she does practice walking while holding on to something. Rebekah has an appointment with a pediatric orthopedist (add another "-ist" to our list of doctors!) on January 24th for x-rays and hopefully a diagnosis. Depending on what could be going on, Rebekah may require some different exercises or treatments during therapy, a brace to keep her hip in the right location, or worst case scenario, possibly corrective surgery. We really will not have any idea until the doctor is able to look at the x-rays and tell us what he feels is happening.

Patiently waiting at the dinner table. As a Christmas "bonus," we took Rebekah's oxygen off for a few hours at each grandparent's house on the days we celebrated Christmas with them. It gave Rebekah a little bit of a break, and it helped to not be tripping over tubing!

Rebekah wanted to help me unload the dishwasher on Sunday after church. She got as far as the whisk and decided that it made a great toy! :)

This little step-stool makes a perfect little bench for Bekah. She was so proud of getting on and off it by herself!

So tomorrow (Thursday) we will see Rebekah's audiologist for a re-check of her hearing. I am going to ask about discontinuing further re-evaluations unless we begin to see problems. Rebekah passed her "long" hearing test, so I really do not see the need to keep doing these "short" tests every six months that usually produce negative or inconclusive results for Rebekah. Originally the audiologist recommended re-evaluations to monitor hearing in the likely event of ear infections (which most kids with DiGeorge Syndrome are very prone to having). However, Rebekah has only had one mild ear infection and one possibly borderline ear infection in her entire life. I hardly consider that "recurrent" ear infections! It may seem like a small thing to only have to go every six months, but when 3 or 4 doctors want to see Rebekah every six months, plus a handful of doctors want to see her every 3 months or less, it adds up in a hurry! This month we have nine doctors visits scheduled for Rebekah, not to mention three therapies a week. It's no wonder I feel like I'm never home to catch up on laundry and cleaning! I'm not complaining about it, though, not one little bit! I will take having Rebekah at home and all of her doctor's visits rather than her being in the hospital! We sure love having that little girl in our family!

Nancy

Happy New Year!

I just realized that it has been a while since I last posted an update on Rebekah. The bad news is that I am falling behind in my blogging. The good news is that there hasn't been anything to update on! :)

January brings in a round of doctors visits for Rebekah. I know, what's new, right? :) This coming week Rebekah will see her pediatrician (for a very belated 15-month check up), her audiologist for a re-check of her ears, and her gastroenterologist for a routine visit. We are not anticipating any changes or issues at the pedi or audiologist appointments. During the GI appointment, I am hoping to discuss a plan to wean Rebekah to a much lower volume of formula through her g-tube, and ultimately, a plan to wean the g-tube use permanently. After being given the go-ahead from Rebekah's cardiologist to cut back her g-tube feeds, we have decreased the volume Rebekah gets overnight from 40 mL's per hour to 35 mL's per hour. I know that doesn't sound like much, but over the course of her 12 hour feed, that adds up to two ounces less per night. And Rebekah is definitely responding to the decrease by eating more! Like all of us, she has days when she eats more and days when she eats less, but overall we have seen an increase in the volume of food she is taking in orally. Please pray that this continues and that Rebekah continues to make forward progress in the growth department while decreasing her g-tube feeds!

Rebekah also has a pretty significant cardiologist appointment this month. On January 11 she will go in for a regular check-up and echocardiogram which will tell us if the oxygen therapy is doing anything to help lower her pulmonary hypertension. Please, please pray that her numbers have begun to come down. Pulmonary hypertension will take a toll on Rebekah's body at some point, and we would love to see those numbers lower. In the same regard, please continue to pray for wisdom for all of Rebekah's cardiac team in knowing when/how to treat her high pressure.

Also on the calendar for January is a follow-up appointment with Rebekah's ophthalmologist. We last saw him in September and decided to wait on any possible treatments until after surgery. Now we are post-surgery, and we will be discussing possible patching and/or glasses to try to strengthen Rebekah's right eye. I have noticed that her right eye has been turning inward more than before, especially if she is looking at or playing with something closer to her face. I am definitely going to be mentioning it to the doctor at our appointment.

One other thing that is not on the schedule, but will be soon is a trip to see the orthopedic doctors at the Shriner's Hospital here in Greenville. Our physical therapist has mentioned it a few times, but again, we were waiting until Rebekah was post-surgery to schedule that appointment. In the last few weeks, Drew and I have felt Rebekah's hips popping when we play with her. It is probably nothing of significance, but we want to make sure there is not a problem we need to address.

Rebekah is all cleared to begin her therapies again this week. We are excited about that! It will be good to see our therapists again. And I must admit, I'm anxious for them to see how far Rebekah has come since surgery. She is really beginning to take off in all areas of her development.

I guess that's all for now. Rebekah has been well since her last hospital visit, and we are praying that continues! For all of our SRBC family, please know that if we are not in services it is because we are trying to keep Rebekah well. Happy New Year! We love you all!

Drew, Nancy, Zac, Justin, Aaron, Caleb and Rebekah Grace

This and That

Hello to all! We are alive and well, contrary to what you may think! :) It is safe to assume that no news is good news and we are just keeping busy around here.

In the last couple of weeks, Rebekah has started both physical therapy and speech therapy. In speech/oral motor skills, Rebekah has mild to moderate delays. The therapist is working with Rebekah to drink from a cup (sippy cup and straw), eat a wider variety of foods with different thicknesses and textures, and add more words to her vocabulary. Right now, Rebekah says "mama" and "dada" and the therapist would like to see her add 3 to 5 new words in the next few months. We are working on it! :)

The Gecko stander with all the bells and whistles!

In physical therapy, Rebekah has significant delays in her motor skills development. The physical therapist, DeeAnn, completed the Peabody Gross Motor Skills Test, and Rebekah scored at a 7 month level for reflexes, a 5 month level in the stationary position and a 6 month level for locomotion. Rebekah will be 11 months old this week, so obviously, we have some work to do! The first thing that was done was to order Rebekah a stander. The specific one is the Gecko Upright Stander. This will allow Rebekah to practice standing on her own. Right now she is not bearing any weight on her feet for more than a few seconds at a time. We will be working up to standing 3 times a day for 45 minutes each time. The stander will have a tray for toys or finger foods. It has supports for Rebekah's waist, hips and knees to keep her in the correct position for standing. It also has wheels on the bottom so it will be easy to maneuver Rebekah around the house. The biggest reason for the stander and the urgency for using it is because Rebekah's hips may not form properly if she does not begin to bear weight on her legs. The stander should arrive sometime close to her birthday.

I'm being a cutie!

Rebekah also had a hearing evaluation in the last couple of weeks. Rebekah was such a good girl and sat very still while the audiologist completed her tests. Unfortunately, Rebekah did not pass the hearing evaluation, so we will need to repeat it in another few weeks. Preliminary results show that Rebekah has middle ear dysfunction and/or hearing loss greater than slight for each ear at normal frequencies. The audiologist said that it was possible that Rebekah had some fluid in her ears, but our pediatrician did not think that was the case. Rebekah must fail three consecutive hearing evaluations at six weeks apart in order to be diagnosed with hearing loss. Rebekah does seem to hear well most of the time, so we have not been overly concerned about her hearing. We will see what the next evaluations bring before becoming too concerned with the results at this point.

Working on eating finger foods!

Rebekah is doing well at trying new foods. We are concentrating more on thickening the foods Rebekah already eats, rather than introduce new foods with a puree consistency. Rebekah's favorite combination right now is mashed avocado mixed with mashed banana. Rebekah has also begun to drink a little bit of milk from a sippy cup, which is a huge step for her! We have struggled with getting Rebekah to drink liquids of any kind. She drinks watered-down grape juice the best, but will tolerate water. She does not like formula in any way - cup or bottle, warm or cold, so we are trying to move away from that during the daytime. Rebekah still gets her formula overnight through her g-tube and probably will for quite a while until we can work her up to enough calories by mouth.

Rebekah playing with Noah's ark animals and Aaron.

Last weekend, we made a quick trip up to North Carolina to see family. It was a very busy, but fun weekend, and we enjoyed getting to see everyone. We were also able to take Rebekah to church at Beacon Baptist, where many people love and pray for Rebekah regularly. It was wonderful to see so many friends and introduce Rebekah to them all.

With the warm temperatures outside, we have been spending more and more time outside playing. Rebekah has also been enjoying the time outside and loves watching her brothers play. On Saturday, we spent several hours outside playing soccer and baseball while Rebekah played in her exersaucer. She enjoyed our afternoon treat of Fudgesicles as well!

Rebekah ate more of Mommy's fudgesicle than Mommy did!

In other areas, Rebekah is doing great! Her oxygen saturations are remaining stable, and we are very thankful for that. Rebekah has also seemed to have a little more energy to play lately. She loves to play with her brothers, and Aaron especially seems to enjoy playing with her. Rebekah also loves music and will clap or bounce when she hears it.

Watch me playing!

Rebekah is also becoming more interactive. She regularly claps her hands when she feels that she has done something exciting. She also waves on occasion and is beginning to play peek-a-boo. Oh, and just this week, I found another tooth! Rebekah now has two teeth on the bottom, although she does not like to show them off. :)

Watch me play peek-a-boo!

This week is going to be busy! In addition to our regular therapies, Rebekah has an "official" weight check, a pulmonology appointment, pictures, and a haircut if I can get an appointment for her. I have no plans to cut it short, but it's time to have her hair shaped and evened out a bit. We will be sure to get some pictures of that! The boys have only this week and three half days next week before school is out for the summer, and we can't wait! I will be so happy to have all my kids at home for the summer!

Nancy