Family Update

I just realized the other day that it's been quite a long time since I've posted any updates on what "The Brothers" have been up to.  So tonight I've posted some pictures and will try to briefly give updates on what's happening around our house.  :)  I had planned to proceed in a nice oldest-to-youngest fashion, but Blogger had other ideas when it uploaded pictures.  It is highly frustrating at best (and impossible at worst!) to rearrange pictures in Blogger, so we're going in semi-alphabetical order....

Aaron just celebrated his sixth birthday in January and last week joined the ranks of the toothless!  He proudly lost his first baby tooth on Wednesday last week, and he was very brave about it!  If you look closely at the first picture, he is admiring the tooth.  The Tooth Fairy almost got caught delivering his dollar because Aaron slept with his legs under his pillow and I , I mean The Tooth Fairy, almost couldn't get the tooth out without waking him up.  All turned out well, though, and Aaron was excited to earn a dollar.  :)

 It really came out!!!

Aaron is more than halfway through kindergarten, and is doing really well!  He is especially strong in math, and that is easily his favorite subject.  He also enjoys social studies and science.  Reading is coming a little harder for him, but he is making good progress.

 Beaming!!

Aaron is doing all other little-boy things and keeps plenty busy.  His favorites are Legos, Playmobil, any kind of building blocks, and all kinds of imaginative role-playing.  His goal for the summer is to ride his bike without training wheels.  I'm sure he'll be racing around with no training wheels before I know it!

 Sweet boy

Caleb is eagerly looking forward to his birthday in April, when he will be four!!  He asks me at least every other day how much longer till his birthday.  :)  Recently we noticed Caleb's eyes were crossing when he was working on puzzles or playing with small toys.  I asked Rebekah's ophthalmologist about it, and he wanted to take a look at Caleb to see what was going on.

 Caleb's favorite is the zebra striped patch.

He thinks it's pretty cool that he looks like

Patch the Pirate!

As it turns out, Caleb has a couple of issues with his eyes that went undetected until just recently.  He has never complained of not being able to see, but our sweet boy is very, very farsighted!  He struggles to see anything from what is called "mid-range" to close.  I am so very thankful that we caught this now, before he starts reading.

Caleb's eyes are also not focusing together.  This actually allowed him to get by with his poor vision for longer that would otherwise have been possible.  Each eye focuses individually on what is in front of him, instead of focusing together.  The result is that his eyes began crossing as it became more of a struggle for him to see clearly.

So Caleb has a very handsome new pair of glasses that help him to see so much better!  He also wears a pirate patch for a minimum of 30 minutes each day in order to strengthen his weaker eye.  This will help to teach his eyes to work together, as well.

 I love Caleb's glasses!  He is so handsome!

In other Caleb news, he is doing a great job learning right along with Aaron.  Caleb can count to 20 and do very simple word problems in his head.  He knows all of his alphabet letters and almost all of their sounds.  He has also started writing his name, and I must say it is very well done for a three year old!

My sweet Caleb

I had to post this silly picture of all the kiddos.  They have so much fun together, and we are so blessed that our children are so close.  I certainly won't say that they don't have their moments (because they do!!), but in general they are so sweet with each other.  What can I say?  We love our sweet boys and girl!

Silly siblings!

 Pucker up!  Justin was having second thoughts

about kissing that spaghetti-covered face!  :)

So what's new with Miss Rebekah?  Well, I have to report that she is doing much, much better this week!  Thank you all for praying for her!  With the help of our wonderful pediatrician making sure we had the antibiotics that Rebekah needed, we were able to start them just a couple of hours after Rebekah began running a fever.  I fully attribute her quick recovery to your prayers and the effectiveness of the antibiotics!  I was very concerned that this illness would earn Rebekah a hospital visit, but she handled it like a champ.  We did, however, have to reschedule her MUSC trip for March 9, but the doctor was very understanding.

 Yep, I can be just as silly as the brothers!

Just as a side note, Rebekah has started referring to her brothers collectively.  It is not unusual to hear her running through the house calling, "Brothers! Brothers!" when she needs or wants something.  It is also very cute!  :)

Rebekah is continuing to do well in therapy, but it's about to get kicked up a notch.  Rebekah's PT has noted that Rebekah just does not have the core body strength (think trunk muscles) that she had before surgery.  So she suggested this week that we go back to aquatic therapy every other week.  If you have read the blog for more than a year, you might remember that Rebekah had aquatic therapy before her second surgery, and she did very well with it.  As a matter of fact, the pool was the first place that she stood on her own!  Rebekah's PT thinks that being in the water will help Rebekah with her balance, core strength and endurance.  So next week Thursday will be Rebekah's first day in the pool.  I think she's going to love it!

In sleep study news, Rebekah's next sleep study will be Monday night.  I'm anticipating an even longer night than the last one.  This time Rebekah will have her CPAP mask on (we call it her elephant), and they will be trying to adjust the settings to find a good place for Rebekah.  If they can get her to a place where she is not having any apnea "events" then the doctor will send the results and settings to our home health company and they will bring a machine to Rebekah and get her started on using it.  The whole process could take up to two weeks.  If the doctor determines that a CPAP does not meet Rebekah's needs, he will schedule us for yet another sleep study to try the BiPAP machine and see where we go from there.  I would definitely ask that you pray for sleep for both Rebekah and I that night!

 What is it with this girl and messy kisses?!

Next up is Justin, aka Goose.  Looking at these pictures, you would think that Justin is a complete ham, but in reality, he is the most quiet, shy one of our group.  He's either going to ignore the fact that I posted these pictures, or I'm going to be in serious trouble!  :)

Justin is nine years old, hard-working, responsible, and usually the first one to volunteer to help if someone has a problem.  He is an incredibly sweet boy, and he is a complete prankster if he thinks no one is watching.  At least once a week (and usually more!) he pops out from behind a door or around a corner and gives me a heart attack!

 It's fun to see what pictures end up on the camera 

when you give it to the kids for the afternoon.  :)

This year Justin had the opportunity to play soccer for the first time.  He has never played any organized sport, and has never really been that interested in sports.  But he was anxious to try, and he is really enjoying it.  One of our friends is the coach, and Justin's friend is also on the team.  They played against a much more experienced team their first game and lost, but they won last week.  I'm glad Justin has the opportunity to learn a new sport!

 Justin enjoys playing mid-field the best.

We also learned this week that Justin made it into the gifted and talented program!  We homeschool our boys through an online charter school, so they are offered the same benefits and programs as our local public schools offer.  We are thrilled that Justin has done so well!  Next year in third grade he will begin taking a more advanced math, as well as an advanced literature class.  He took a sign language course this year and loved it.

 Sweet and silly Goose!

Now for our biggest boy, Zachary!  Zac is excited about his upcoming double-digit birthday in March.  He is rapidly growing into a young gentleman.  Zac is the first one to offer to open a door or help carry heavy things.  He truly is my right-hand man around home.  He (usually) doesn't complain about being asked to help with his younger siblings, and has learned almost all of Rebekah's care.  He even changes diapers and dresses his sister!  Yes, you can all be jealous!  :)

Thumbs up for Zac's brownies!

Recently Zachary has shown a real interest in cooking and baking.  Many nights he is my shadow in the kitchen helping me cook dinner.  On Sunday afternoons he enjoys baking.  We enjoy it, too!  His most recent accomplishments are brownies and coffee cake - from scratch!  

Zachary is also doing very, very well in school.  He is in the gifted and talented program in fourth grade, so he is technically taking fifth grade math, advanced science and an additional literature course.  He especially enjoys social studies, and is currently studying the Civil War era.  We have made several trips to the library for additional books about the Civil War, and Zac reads them voraciously!  Zachary is also enjoying his first year of Spanish.  He is currently working on his first long-term science project.  Zachary chose to test potatoes to see where they will sprout the fastest.  If you come visit, don't be alarmed if you find potatoes in strange locations! :)

Yummy brownies, Chef Zac!

And last, but certainly not least, let me introduce you to Baby Ellis!  Baby (affectionately nicknamed Thing Six and shortened to T6) is due September 5.  Zachary is hoping T6 is a boy; Justin is hoping he/she is left-handed; Aaron is hoping for a girl, and Caleb wanted twins!!  Thankfully, Caleb's wish was not granted.  :)  Rebekah doesn't really have a clue, although we are teaching her to say "I'm a big sister!"

Baby Ellis

Of course, one of the first things that we were concerned about is whether or not this baby could have a heart defect.  It is possible.  The risks are greater because of Rebekah.  But we are choosing to trust that God has the perfect baby for our family. Not necessarily "perfect" according to the world's standards, but a baby who will fit perfectly into His plan for our lives.  As far as the doctors have been able to determine at this point, everything looks good.  We won't be able to learn anything about this baby's heart until our first fetal echo in April.  We're also hoping that T6 will cooperate and let us know if he/she is a he or a she.  :)

Thank you all for praying for Rebekah and our family.  We appreciate each and every one of you!

Nancy

Sleep Study Results Part 2

Now where did I leave off?  :)  There were just a few other things from Rebekah's sleep study results that I wanted to share (mostly just so I can look back and reference the information one day if I need to).

One good observation that Dr. G made is that Rebekah's carbon dioxide (CO2) levels are on the low side of normal.  Actually, in some cases, they were below normal.  Part of the sleep study is measuring the amount of CO2 that the body expels each time we breathe out.  For a lot of kids (maybe adults too?) with central apnea, they retain too much CO2, so their levels are quite high.  This can lead to more "events."  Honestly, Dr. G told me at our initial consultation that he anticipated finding Rebekah's CO2 levels to be high, and he gave me a couple of treatment options for that.  He was quite surprised at how low the levels were, and showed me that the lower the CO2 levels were, the more events Rebekah had.  So, one of the goals Dr. G has is to actually increase the amount of CO2 that Rebekah retains, in the hope that it will decrease the number of events that she is having.  One of the ways Dr. G wants to increase the CO2 is by increasing the amount of oxygen Rebekah is on overnight.  Rebekah has been on 0.5 liters of oxygen for a long time now - well over a year, and that is a good therapeutic level for her pulmonary hypertension.  However, Dr. G wants to "pin her to the ceiling" (his words, not mine) with oxygen in the hopes that the more oxygen going in, the more her CO2 levels will rise and hopefully the less apnea we will see.  It sure is worth a try!  So during Rebekah's next sleep study they will be trying her out on 1.5 or 2.0 liters of oxygen to see if that makes any measurable difference in the number of apnea events that we see.

Baby in a Box!  :)

Even though it appears that the central apnea is entirely, or at least in part, related to the CO2 levels in Rebekah's body, Dr. G is still recommending an MRI to rule out the possibility of any possible cranial or spinal malformations.  One in particular is Chiari (pronounced key-ARE-ee) Malformation, in which a piece of the skull is abnormally shaped and presses into the base of the brain or the brain stem.  Among other things, this could cause the type of central sleep apnea that we see in Rebekah.  Dr. G really doesn't think that we are going to find anything abnormal in the MRI, but with Rebekah's complicated medical history, he doesn't want to assume that the apnea is related to something else, without ruling out some brain and/or spine abnormalities.

Rebekah was given a small 

Hello Kitty suitcase on Sunday.

She is in love!

It will likely be late spring or early summer before the MRI is scheduled.  Dr. G wants Rebekah to be comfortable with her CPAP machine for a while, so that she can use it when she comes out of the sedation.  Yes, this MRI will involve sedation and intubation.  We would love to be able to schedule it when she is in Charleston for a heart cath or vocal cord scope.  We'll just have to see how the next couple of months play out and which doctors want to see her when.  We were told June or July for her next cath date, so we could potentially make it work if everyone can coordinate together.  What a blessing it would be to only have Rebekah intubated once and do both the cath and MRI at the same time!

I think that's everything I can remember from the sleep study.  I hope it's everything that we covered!  Rebekah has her first speech therapy on Thursday, so we would appreciate prayers that it goes well.  She should have had her first session last week, but we had to cancel due to sick brothers.  Hopefully everyone stays well between now and Thursday!

Please continue to pray for our little buddies at MUSC.  As far as I have heard, there have not been any significant changes today.  Especially remember their parents and families in prayer.  The days are agonizingly long when you are waiting, hoping for some sign of improvement.

Nancy

Getting Sick?

Thankfully the last couple of days have been pretty uneventful around here.  :)  Rebekah is completely enjoying being at home with her brothers and just being a toddler!  Aaron and Caleb and Rebekah painted pet rocks on Friday.  Rebekah's rock was red.  The rock wasn't the only thing that was red!!  :)  It is so much fun to see Rebekah feeling well enough to do projects with her brothers!

Rebekah has continued to have periods of coughing and choking over the last several days.  She has done well with thickened liquids, and the coughing doesn't seem to be during meals or when she is drinking liquids.  For a while, the coughing was mainly during the night and in the mornings when Rebekah first woke up.  However, now she is coughing when she cries, and off and on during the day.  I think we are headed to see the pediatrician in the morning to see what might be going on.  I'm hoping that this is not the result of an episode of aspiration sometime before we started using the thickener in Rebekah's drinks.

Friday night I had the pleasure of meeting with a group of heart moms from our local area.  Three hours flew by so quickly!  It was so encouraging to spend time talking with other moms whose children struggle with some of the same things that Rebekah does.  It was definitely worth the drive to get there!

While I was gone Friday night, Drew and the boys got out our Twister game.  The boys had so much fun playing.  I'm amazed at how twisted they were!  :)

Saturday was Aaron's birthday, so of course we had to make a birthday cake!  This little girl hasn't been into the chocolate at all, has she?!  :)  I love how innocent she looks - Who, me?!  She took great pleasure in sneaking her little finger into the frosting when she thought I wasn't looking.  In spite of her help, I thought Aaron's Angry Birds cake turned out pretty cute.

Our little Aaron-bear turned six years old this year.  Wow!  It's hard to believe our little peanut is this big.  He is such a good helper and adores his little sister.  We are so thankful he's a part of our family!!

This morning Rebekah had her vision check-up.  We are very blessed to have a pediatric ophthalmologist less than twenty minutes from us.  He was very pleased with Rebekah's eyes.  Her ptosis seemed a little better to him today, so we are grateful for that.  We will continue to see the eye doctor every six months indefinitely to continue to make sure that Rebekah's vision is not changing or worsening.

No, no, not another picture!  :)  Well, okay, maybe just one picture.  You can really see Rebekah's black eye now.  Hopefully it will start to fade in another couple of days.

Rebekah has been cleared by her cardiologist to resume therapy whenever we feel she is ready to start.  Rebekah's awesome EI will be coming to visit on Friday, and we will set up PT to start probably next week.  I'm just a little hesitant to push Rebekah too far, especially when she is having the choking and coughing.  We'll see what tomorrow's doctor's visit brings.

I love Rebekah's beautiful outfit here.  Strawberry shortcake scarf, hat and Great-Grammy's mittens.  Rebekah asks to put them on and then takes them off about 3,286 times each day.  I'm glad she loves all of her girly accessories!  :)

No autographs, please!  :)

I'll hopefully update sometime tomorrow after we find out what the doctor says.  Pray that it's nothing serious and Rebekah will be feeling better soon!

Nancy

A Little Update

I've been putting off a blog post in hopes that I would have surgery date to give you, but I've given up. I'm posting anyway, and maybe we will have a surgery date by October. Maybe. :)

I don't really know why it is taking so long this time for MUSC to schedule a date for Rebekah. We know that her case has been presented at conference (several weeks ago), and we know that the doctors have decided to proceed with the surgery. So why the wait? The best guess I can come up with is that she is just not a priority case right now. Yes, the surgery needs to happen, but from a medical standpoint, it really doesn't matter if it happens this week or three months from now. I guess we'll know the date when they call us, and no amount of fretting over it is going to make them call us any faster. :)

In other news, Rebekah is talking a mile a minute! :) She truly is our little parrot and will attempt to repeat almost anything she hears. It's quite comical to hear her repeat random words or phrases that her brothers have said. Her favorites seem to be singing Jesus Loves Me and Deep and Wide. She says "song" and touches my lips to let me know that she wants me to sing her songs with her.

Rebekah is playing with "hats."

Rebekah has had great sessions at physical therapy the last two weeks. This week she was stepping up and down from a little four-inch platform with almost no assistance at all! Rebekah's PT mentioned that if Rebekah does this well again at her next PT session that we will probably go back to an every-other-week schedule. That would make this Mommy very happy!! :)

Justin and Bekah are almost inseparable.

I am sitting here trying to think of other Rebekah "news" to share, and I'm honestly drawing a blank! After two years of medical crises, delayed development and more than her share of colds and sickness, Rebekah is just being a normal two-year-old! We are certainly enjoying this period of "normal" right now and will continue to enjoy it for as long as it lasts. :) We are so thankful that the Lord has blessed Rebekah with several months of good health. She is still sleeping a lot more than a "normal" two year old, but that is going to continue at least until surgery and may always be a problem that Rebekah struggles with.

Lookout, Brothers! There's a new sheriff in town!

This will be Rebekah's first RSV season without the RSV vaccine. The vaccines are only given until the age of two, since RSV is usually worse for young children. However, we are concerned since Rebekah's anatomy is very different from that of other two-year-olds. I'm not sure what will happen if Rebekah gets RSV. Most certainly it would be a hospital admission. I'm afraid it would be a struggle for her to keep her oxygen saturation up in her normal range. Please pray with us that Rebekah does not come down with RSV this season!

In case you missed the previous post, you are all invited to join us for the Ride for Mike Family Ride on Saturday, October 22. The ride starts at 8:00 at Cleveland Park in downtown Greenville and ends with a picnic lunch at 11:00 at Gateway Park in Traveler's Rest. There is no charge for the picnic or the ride, but we do need a count of how many will be attending. If you would like to come, please feel free to email Jonathan or leave a comment below with the number in your party. Also, Jonathan has set up a tax-deductible fund for those who are interested in giving to Ride for Mike 2011. All proceeds will be disbursed through Helping Hands Ministries and will be used for expenses directly related to Rebekah's care, especially with her upcoming surgery. You can find instructions for giving to Rebekah's project by clicking the Ride for Mike link on the top left sidebar of the blog, or go directly to the Ride for Mike 2011 donation page.

Thank you all for your support and prayers.

Nancy

Catching Up

So I'm finally back with an update...and pictures! :) To say that the last few weeks have been busy would be an understatement, but it is a good kind of busy. Drew is busy finishing the last couple of weeks of school (for those of you who don't know, he is back in school working on a Computer Science degree), I am busy trying to keep up with everyone's crazy schedules, the older boys are busy in their school work, and the younger boys are just plain busy!! And of course, Rebekah has an agenda all her own. :)

No, I didn't just randomly stick in a picture of my cabinet door.

If you look closely, you will see very tiny fingers peeping out of the top.

Those very tiny fingers belong to......

.....this very special little girl!

We were pleased to learn at Rebekah's most recent trip to the pediatrician that she does not have an ear infection! If you read the last post, you will remember that we had some concerns about another ear infection, but not this time! There is still fluid in Rebekah's ears, so we do have some concerns that we will be addressing at Rebekah's audiology appointment in a couple of months, but for now she is infection-free!

Rebekah loves to feed her baby dolls a bottle. :)

Rebekah's most recent cardiology visit was also encouraging. Dr. Lucas was very pleased with Rebekah's echo. It seems that the pressures in her pulmonary arteries have gone down again (remember, they can only estimate using echo, but this is a good sign!). Rebekah's heart function continues to look good also. Yippee!! We had some concerns prior to the appointment about an increase in Rebekah's sleeping, but it appears to be unrelated to her heart. Since then, she has gone back to a normal-for-her sleep routine. Dr. Lucas is targeting late summer or very early fall for the date for Rebekah's next heart catheterization. This will be an important catheterization because it will give us the exact measurement of the pulmonary pressures. We need the pressures to continue to drop between now and then! If the pressures are not down significantly from the last heart cath, then Rebekah will likely need another open heart surgery to re-open a portion of her VSD that was closed in November. We are praying that the pressures are down enough to buy her a little more time before her next surgery!!

Just being cute!

Between now and the end of the summer, we will continue seeing Dr. Lucas (cardiology) once a month. The plan is for Rebekah to grow, grow, grow this summer and to stay healthy and out of the hospital! Rebekah will continue OT at least until June when her therapist goes on maternity leave. We will re-evaluate at that point and determine if Rebekah still needs services.

Showing off a new hat!

Rebekah is making great progress in PT, and we are so very thankful for that! She is an amazing little fighter and has come so far since November. If you remember, she was just starting to pull up on things and stand the week before her heart surgery in November. Now she is walking everywhere! Rebekah's PT is helping Rebekah with stairs and stepping up and down from different platforms. While this is a necessary skill for Rebekah to learn, it is also helping to improve Rebekah's balance and stability while she is walking. The next thing on the schedule is jumping...I know that will be fun! :)

We have noticed in the last few weeks that Rebekah has been walking on the insides of her feet much of the time. Because we are super paranoid about Rebekah's development, it caught our attention. I mentioned it to her PT last week, and it turns out that Rebekah (and all of our boys, as we discovered!) is flat-footed. Not only that but her feet are actually rolling inward as she walks. So, she has earned yet another doctor - an orthotist! Rebekah will be having casts made of both feet so that she can have plastic orthotics made for her shoes. This will help to keep her feet in the correct position when she walks. Hopefully this will help prevent any future leg/foot/hip problems as she grows.

Please continue to keep Rebekah and our family in your prayers. We are so thankful for each of you and your ministry of prayer for our family.

Nancy

Officially 20 months!

Rebekah has been her adorably cute self this week! It seems like every time I turn around, she is saying a new word, or trying something new. :) Since February didn't have 29 days this year, Rebekah gets to be 19 months old for another month, right? I guess not. So, it's fair to say that sometime in the last couple of days Rebekah hit the 20 month milestone.

Today was a great day in physical therapy. For various reasons, we have not been to PT in three weeks. In fact, the last time we were at PT, Rebekah was just starting to take 3-4 steps in between DeeAnn and me. What a difference three weeks can make! DeeAnn was thrilled to see Rebekah walking all over the gym! Not only was Rebekah walking, but she was climbing in and out of the ball pit, climbing onto the small trampoline, walking up the ramp to the large trampoline, and generally trying out anything she put her mind to. It is just amazing to watch her growing stronger and developing more each day!

Tomorrow Rebekah is supposed to be catching up on her 18 month shots. I called today and asked to see the doctor instead (normally we would just see the nurse for shots). Rebekah has been pulling, poking and generally messing with her ears more the last two or three days, and I want to make sure the ear infection from last week is cleared up. Especially since we are heading for Charleston this weekend.

Thankfully, I think we have all gotten rid of the cold that we seemed to be sharing for the last few weeks. Except for the occasional cough, there are no signs of that cold bug anywhere in the house! I guess Lysol and fresh air did the trick! :)

I have some (hopefully) super-cute pictures and some more videos to download from my camera. I've been procrastinating because there is so much video that I know it's going to take quite a while to download. Maybe actually writing it will be a motivation for me to download it so I can post some new picture and video on the blog. :)

Hope you are all having a great week! I can't believe it's half over. Yikes! I have too much to do in the next three days!!

Nancy

Catching Up

Wow, where does the time go??! It seems like I just updated the blog a few days ago, yet it's been two weeks since the last update! I guess there is quite a bit to fill you in on since the last update.....

Justin and Bekah sharing some hugs.

He love his little sister!

Rebekah was able to see her endocrinologist for the appointment we missed due to the snowstorm. I always dread those appointments because it means labs, and that means a bad day for Rebekah and a few lab technicians. This time, though, the lab tech was able to get blood on the second try! Dr. Amrhein is primarily checking Rebekah's calcium and phosphorus levels because of her DiGeorge Syndrome. Her calcium is great, but the last couple of labs have shown that Rebekah's phosphorus is just a bit on the high side. That can be a side effect of something really bad (like kidney failure), but in Rebekah's case, it is probably completely normal. She is still on diuretics to keep fluid off her lungs and heart, and that can cause mild elevation of phosphorus levels. Also, the DiGeorge Syndrome itself can indirectly cause high phosphorus levels since DiGeorge affects the parathyroid, which in turns affects (elevates) phosphorus levels. Bet you didn't know all that, huh?! Anyway, it is something to have checked every six months or so, but nothing to be concerned about as long as Rebekah's levels stay where they are or drop. If they start trending higher, the doctors may take a look at a few other possibilities, but we don't really think that's going to be a problem.

Zac and Rebekah. This boy will do just about anything for his sister....

except touch her bracelets and necklaces! :)

See how badly the oxygen cannula is irritating her skin?

Rebekah has had a time with her oxygen lately, and not in a good way! She has outgrown the infant cannula that she was using prior to her heart surgery, so she is now using a pediatric cannula. That's not a bad thing as far as air flow, but it's thicker and less flexible, and much harder to work with. We were able to fasten Rebekah's infant cannula with a single steri-strip on each side of her face, but that doesn't hold the pediatric cannula. We have tried a few kinds of tape, some larger steri-strips, and just tightening the tubing in the back so it couldn't slide out of place. Each of those methods left it's mark on Rebekah's face. She is so super sensitive to adhesives that no matter what we try, her face ends up with large red irritated areas. When we tightened the tubing in the back and used no adhesives, she wound up with raw sores on her cheeks where the tubing touched her skin. Fortunately, Andrea (Owen's mom) came to the rescue!! Thank you a million times over, Andrea!! Owen has these nifty little contraptions called Tender Grips (you can check them out by clicking here) to hold his cannula in place. The flesh-colored part sticks directly to the skin with a very mild adhesive, and the tubing is actually sandwiched between a clear sticky part and the flesh-colored part. No more tubing rubbing against Rebekah's cheeks! It was a very long, round-about procedure to get these pads, and I'll not bore you with the details. We finally got them delivered today, and so far, so good! I'll report after we've used them for a couple of weeks and let you know the final verdict! :)

Aaron can't be left out of his hugs from Bekah.

I have no idea why she was so serious in all of these pictures!

So all of that has been going on with Rebekah's oxygen, and then last night she had her first accident. :( Rebekah has been doing so well at pulling up on almost everything, including the kitchen cabinets. She was playing with my kitchen towels that normally hang on my oven door, and they were laying in the floor when she decided to pull up on the cabinets. You guessed it....her foot was on the towel, not on the floor when she pulled up, and she fell face-first onto our very hard kitchen floor. The cannula was pushed up her nose and she had the worst nose-bleed that I have ever experienced with any of our children. In just the few seconds from when Drew picked her up till I had wet washcloths to clean her up, her mouth was full of blood and it was dripping off her chin. It was pretty bad. All of her teeth appear to be intact, though, so we are very thankful for that! Understandably, we left the cannula off for the night and a good portion of the day. Rebekah does not need the oxygen to keep her sats up like she did prior to surgery, so it was not a risk to her medically to not have the oxygen. We felt like her poor little nose needed a break after that injury. We did put the cannula back on this evening, and she was fine with it. Leaving it off was probably more for Mommy's peace of mind than from any discomfort Rebekah had! :)

Uh oh....you caught me with my brother's toy!

The other thing we have started experiencing with Rebekah's oxygen in the last week or so is nose bleeds. Well, ones that aren't caused by injury! When Rebekah saw her pulmonologist last week, I mentioned that to her, and she asked me if Rebekah had a humidifier for her oxygen. I replied that no, it had never been offered or suggested to us. Dr. Gwinn immediately responded that we should leave it to her, and that afternoon our home health company called about fitting our concentrators with humidifiers! So Rebekah is getting nice moist air that will help her nose to not get so dried out. We are hoping that reduces, if not eliminates, those pesky nose bleeds!

I can't decide which is my favorite time of day...

breakfast, lunch, or dinner!

Rebekah had her appointment on Monday with the orthopedist. He did a quick check of Rebekah's hips and joints, then ordered a set of x-rays of her hips. The good news is....there is nothing wrong with the development of Rebekah's hips!! He didn't really have a great explanation for why Rebekah is far stronger on her right side than her left, but said it isn't due to anything structural. His advice was to continue therapy and come back to see him if Rebekah isn't walking by her birthday. Something tells me we won't need to go back to see him! :)

I redecorate Mommy's bathrooms in my spare time! :)

Rebekah is truly getting around the house at lightning speed now! She has effectively learned how to go up and down the stairs, so I am never quite sure when I walk out of the room where I will find her. It's a great problem to have, though! Rebekah is quite adventurous, and I have found her in bathrooms, in kitchen cabinets, in the laundry room, and in closets. At least she is great at entertaining herself! :) Oh, and Rebekah got stuck at the scene of the crime in the above picture. After she finished her redecorating, she sat on the little stool, but her feet got stuck because she still had shoes on (normally she can get on and off the stool by herself). She had to call "Mama" to come bail her out!

Miss Priss (as DeeAnn calls her) walking in therapy.

Rebekah is really progressing unbelievably fast in therapy now. I wondered for a while after surgery if we would ever see the "take-off" that so many people described to us after their children had heart surgery. It has taken a few weeks, but we are finally there! The Care Center loaned us a little walker (similar to the one above, but smaller) to use with Rebekah at home, and she is zipping all over the downstairs in it. She will even crawl to it and use it to walk! The big break-through came today when DeeAnn (physical therapist) had Rebekah sitting on a small stool and standing. Not only did Rebekah stand with little to no assistance from DeeAnn, she followed that up with walking about four or five steps by herself! And then she repeated the performance about half a dozen more times! I'm kicking myself for not having the camera in therapy today. I will get it on video soon, though, because when Drew got home tonight, she walked a few steps in between us. I really think that Rebekah will be walking more and more in the next few weeks as long as she doesn't have another hospitalization.

Baby Blake (one of our friends) came to visit.

Rebekah found his pacifier highly entertaining!

Several months ago when Rebekah had speech therapy, her therapist and I decided to put any further speech therapy on hold until after her Truncus repair. Since she is now almost three months post-surgery, Victoria decided to re-evaluate Rebekah's need for speech therapy. I knew that Rebekah had a pretty decent vocabulary (counting both voiced and signed words), but it amazed me as I listed what I could remember. Rebekah says or signs (or both!) over 30 words! When Caleb was Rebekah's age (she will be 19 months on Saturday), he couldn't even say 5 semi-recognizable words. I know that's not a terribly accurate comparison since Caleb had a moderate speech delay, but still - wow! The long and short of our conversation is that Rebekah scored exactly within the normal range for speech and does not meet the qualifications for speech therapy!! What a blessing! Not only the blessing that we don't need to add another therapy right now, but I am so thankful that Rebekah's speech is exactly where any other "normal" 19 month old should be! We have heard for the last year and a half from Rebekah's geneticist that she will have speech delays, articulation disorders, nasal speech, etc. and will definitely need therapy, so this was just a huge blessing for us! There is a possibility in the future that we will see some articulation problems as Rebekah begins to say more words and sounds, but for now we are rejoicing that she is exactly where she needs to be!

Rebekah loved Blake's pacifier. Seriously. If I had let her keep it,

she would have never taken it out of her mouth.

Sorry, girl! Not about to fight that battle now!

The other appointment we had this week was to Rebekah's ophthalmologist. We have been checking the ptosis (drooping) in Rebekah's right eye for almost a year now. Thankfully, it has not gotten any worse, so for the time being we are going to continue to watch it. There is still the possibility of glasses or patching in the future, but as long as their is no progression of the ptosis, it is going to be a wait-and-see game. I'm thankful, once again, for a good report! We will see Dr. Johnson back again in six months. It's amazing that July is six months away, and already it is filling up fast. Rebekah has four appointments scheduled that month already!

Rebekah walking with DeeAnn last week.

Like I said, I didn't have my camera in therapy today, so I don't have any video of Rebekah walking unassisted. This video was last week Wednesday in therapy. Rebekah is wearing "squeak" shoes, so the squeak-toy sound you hear is her walking. She wore the shoes outside last week and about drove our neighbor's dogs crazy. Thankfully they are contained, or they might have seriously terrified Rebekah while trying to get to her shoes! :)

I know this was a terribly long post, so if you made it all the way to the end - thank you! We appreciate each of you and thank you for praying for our family and our little Rebekah.

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