Monday, August 29, 2011

Rhett Goes Digital

Today was our second appointment at Cranial Technologies clinic in Austin.  The purpose of today's appointment was to take measurements of Rhett's head so that his helmet could be made specific to his needs.  Cranial Tech does not use the traditional casting method, but instead, the DSi (Digital Surface Imaging).  The DSi technology utilizes a series of high-resolution digital cameras strategically placed to capture a complete 360-degree image of an infant's head shape.  No messy plaster here, people!

We left at 7:15 a.m. this morning for our 10:30 a.m. appointment.  We actually got there around 10 a.m. so that I could feed the babies before Rhett's appointment.  The clinic was so accommodating, and had a room ready for us when we got there.

Arriving at Cranial Tech

After the babies ate, we had to get Rhett undressed down to his diaper.  He loves not wearing he was pretty happy!

 Totally relaxed....look at those feet crossed AGAIN!

Playing with daddy waiting for our appointment

Then Miss G came in and explained what was about to happen.  She needed to put a net over Rhett's head to keep his hair down while they took the images.  I was so worried that he was going to scream and not like it, but he proved me wrong.  :)   

She played a little game of peek-a-boo with him first to get him used to her and the net.  She let him touch it, lick it (yes, it's true!) and hold it.  Then she gently put it on him.  He didn't seem to care one bit!

 playing peek-a-boo
 Miss G put the hairnet on very slowly

 one more round of peek-a-boo

 and it's on!

Rhett kept trying to lick and eat the hairnet....YUM!

Now it was time for the images.  We went into another room and they sat Rhett on a little stool in the middle of the room.  He was surrounded by 15 high-resolution cameras.  Their cameras capture images that are accurate within a fraction of a millimeter.

 sitting up nice and tall

 looking straight ahead

 there are cameras on all sides and above Rhett

 Daddy and Rhys cheering Rhett on

While Miss G held Rhett on the stool, Emily kept Rhett's attention.  She had lots of fun toys that made noises and had bright lights.  The screen behind her also had images flashing for him to look at.  The DSi image is obtained in 1/180th of a second.

 cool toys!

here you can see the screen with the pictures

what a brave boy!

all finished!

After the images were taken, we went into another room to wait for the pictures to process.  Rhett got a new diaper and change of clothes (since he spit up on his) while we waited.  Rhys joined in and did a little tummy time while "talking" to Rhett while he got changed.  I'm sure she told him how proud she was of him!

"way to go, Rhett!"

After the images were processed, they took us back into the DSi room.  It was really amazing!  I appreciated that they explained all of the images, and told us how they would use them to create Rhett's DocBand.

They did emphasize again today that Rhett's case of plagiocephaly is very severe.  He will most likely need 2 helmets.  Only 20% of the children that they see need 2 helmets....most get the results they need with just one.
You can see how abnormal his head shape is with this image that they took:

We left with two tired, but happy babies.   Daddy took mommy to Sonic, and then everyone was happy.

We will go back to Cranial Tech in 2 weeks, on September 12, to get Rhett's DocBand.  We will learn how to put it on him, how to clean it, care for it, etc.

Thank you for your continued prayers!

Friday, August 26, 2011

Head Shape, Helmets, and Hope

When we found out we were having twins, we were beyond excited.  When we found out we were having a boy and a girl, we were elated.

Two of everything.  One pink.  One blue.

Instant family.  Total cuteness.

We were so excited, but we were also scared.  We knew that twins face a higher risk of being born premature, have a low birth rate, and are more likely to have health problems.  Our doctors kept telling us, and preparing us for different scenarios.  As each week of the pregnancy went by, we relaxed more and more.  Then the babies were born and were a good size!  Rhett weighing 6 pounds, 11 ounces, and Rhys at 5 pounds, 7 ounces.  They were healthy and did not have a NICU stay like most twins do.  We were so relieved and thankful that we were able to bring them home just four days after they were born.

We thought that all these "risks" of having twins were behind us.  Unfortunately, we were wrong.

At the babies' one week appointment, our pediatrician noticed some tightening in Rhett's neck muscle and gave us some exercises to do with him to stretch it out.  She was not concerned, we were not concerned, and we did our "homework."  At the next appointment, she noticed that he was favoring his left side and gave us some repositioning exercises to do.  So, since Rhett liked laying on the left side, we would gently turn his head to the right and prop it with a rolled up blanket.  It was easy enough to do.

As Rhett grew and got stronger, it became more difficult to keep him off of his left side.  He would knock over anything we would use to prop his head.  At his 2 month check-up, the pediatrician encouraged us to keep doing the stretches and told us not to be concerned, that these things usually work themselves out.  I was beginning to become a little concerned because I noticed that his head looked a little flat on the left side.  We continued to do the exercises as often as we could.  Here are some of the pictures I took so that we could compare later on...

At the 4 month check-up, our pediatrician gave Rhett a diagnosis of Torticollis, which is a tightness of neck muscles, as well as Plagiocephaly (abnormal head shape/flat spot).  He referred us to a Physical Therapist to start treatment for Rhett.  He said that we would check his head shape again in a month and if improvement had not been made, we may have to get Rhett a helmet.

We began therapy immediately and immediately saw improvement.  At the beginning of treatment, the therapist noted that Rhett only had 25% range of motion on the left side.  We were going to therapy twice a week, as well as doing the exercises at home on the other days.  After a month of physical therapy, we had a follow-up with the pediatrician.  We were almost certain that he was going to tell us that Rhett needed a helmet.  At the appointment, however, he noticed the improvement as well and wanted to watch him for another month or so before sending us on to a specialist.  He did say that we could go and get another evaluation if we wanted to.

I left that appointment feeling uneasy.  Rhett had made great improvements with his range of motion, but it also seemed that some things were getting worse.  His left cheek was fuller.  His ears were not even.  The flat spot (plagiocephaly) was getting worse.  I love our pediatrician, but wanted to get a second opinion.  We had been working with 2 different physical therapists so I called them.  I asked them what they thought about pursuing a helmet or waiting.  Both of them encouraged us to go on and get an appointment.  One of the therapists said, "If it were my child, I would run to see an orthotist."  That was all I needed to hear.

We did some research and found that the *best* place to go would be in Austin.  There are companies in San Antonio that market the cranial bands, but their products are heavier, not as custom-made for each child, etc.  Since Rhett has the torticollis, a lighter helmet would make it easier for him to continue working on his neck muscles, while reshaping his head.  We decided to go with the DocBand.

 Here is what the cranial band (helmet) looks like

it only weighs 6 ounces!

We had a great appointment at Cranial Technologies in Austin this past week.  We love our therapist, Amy, and appreciate their honesty and care.  We found out that Rhett has a severe case of Plagiocephaly.  He will need one, and possibly two different helmets to reshape his head.  He will be wearing the helmets anywhere from 2-6 months, and possibly longer depending on how he responds to treatment.  

Amy did a quick check of Rhys' head shape while we were there

Here are the pictures that Cranial Technologies took of Rhett.  Sorry the quality is so poor....I couldn't get the scanner to work, so I took a picture of the picture with my phone.  

 You can see the increased head height on the left
 Again, increased head height on left
 sloped forehead

 left occipital flattening; right frontal flattening
left eye and cheek anterior to the right

I have had a lot of guilt over these issues the past couple of months.  I kept thinking, "If only I had done more stretches with him.....If only I would have turned his head more often....If only I did more tummy time with him....etc."  The therapist that did Rhett's evaluation told us that Rhett has a classic case of plagiocephaly caused by restriction in the womb.  Having multiples or a small pelvis contributes to this.  Basically, Rhett was head down in the womb for most of my pregnancy.  Rhys was standing on him.  (She will love to hear about that one day!)  So, the pressure from her pushing him down, as well as my pelvic bone pushing against his head is the cause of this.  They told us that no amount of repositioning or stretching would have corrected this.  While I am not glad that Rhett has to go through this, I am relieved that it is not my fault.  Cranial Tech works with a lot of multiples, and usually Baby A (like Rhett) is the one with the condition.

Rhett in the elevator leaving....he always crosses his feet like this.  So funny!

Would you pray for us?  I know there are many parents out there fighting for their child's life, and this is nothing in comparison to what they are going through.  We have a "fixable" problem.  So I don't want to complain!  To be honest, though, it has been hard.  Especially for me.  I sometimes worry that I am not giving little Rhys the time and attention she needs.  Rhett's therapy takes a lot of time and energy. Oh, and we will be traveling to Austin weekly for appointments.  Would you pray that the babies are each getting what they need from me?  And pray that I will have the energy and love to shower on them.  And that Rhett will adjust quickly to his new helmet?  I know that is a lot of requests....I know there are a lot of prayer warriors out there who have already been praying for our little guy.  We appreciate you and have hope and trust that God will see us through this.

Here is what is going to happen next:

Monday, August 29th:  Rhett will have imaging done to measure his head (check the Cranial Tech website to see how they do's really high tech!)

Monday, September 12th:  Rhett will get his first band on!  He will wear it for a few hours and then they will check him again, make adjustments, etc.

After that:
*Rhett will wear the band 23 hours a day (off for bathing and cleaning of band)
*Weekly appointments for adjustments in Austin (as Rhett's head grows, the band will need to be adjusted)
*Weekly physical therapy appointments
*Daily physical therapy with mom and dad
*A possible 2nd fitting and helmet in 2-3 months

I will keep you all posted on Rhett's progress through the blog.  Thank you in advance for your prayers! 

P.S.  Of course, if Rhett has to wear a helmet, I have to make it cute.....starting to brainstorm designs now....any ideas?

Sunday, August 21, 2011

R&R at 5 Months

Dear Rhett & Rhys,
I can't believe you are 5 months old!  It has been so fun to watch you change and grow and it just keeps getting better all the time!

Whoa....are we really 5 months old?

7:00/7:30 a.m.  Wake and nurse
Play (tummy time, read books, watch and "talk" to each other)
8:45-11:00  Nap (Rhett gets up about 30 minutes early and plays while Rhys gets more beauty sleep!)
11:00  Nurse
Play (tummy time, read books, bouncers, practice sitting and rolling, play gym)
12:45/1:00-3:00  Nap (Rhett up 30 minutes early again)
3:00  Nurse
Play (go on errands, read books, same as above)
4:30-5:15  Nap
5:15  Wake and play, take baths, swing, sit with daddy, read books
6:45/7:00  Nurse and Bed

Yes, Rhett is wearing a pink bib (it's a twin's life...)  Sorry buddy!

You are still sleeping so well!  We rarely have any fussing for naps, and you both sleep 11-12 hours each night.  You usually take 2 long naps and 1 catnap each day.  Rhys-you need a little more sleep than your brother!  Both of you are still swaddled for all naps and night.  We have started swaddling Rhys with one arm out since you like to suck on your thumb (and since you get out of it most nights anyway).  We hope to transition you to your sleep sack soon.  Rhett, you still need the swaddle and love being so tight and cozy!
cozy babies

Both of you are still nursing well.  You are getting faster and more efficient.  You both nurse 4 times a day.  Rhys-you get so distracted when you eat....sometimes I have to cover your head and eyes with a towel.  You get mad if I try to watch tv or talk on the phone.  You both love to be together and usually hold hands while you eat.  It is so sweet!
You hold hands all the time!

We spend lots of time playing together.  You now enjoy peek-a-boo and want me to do it over and over again.  Rhett-you love to be tickled and I have found 3 ticklish spots so far (under your chin, the middle of your back, and on your inner thigh).  Rhys-you love to do anything as long as someone is watching you or talking to you.  You both play independently several times a day.  You don't really "play" with each other yet, but have started looking at each other more.  Tummy time is getting easier for you and you are getting stronger.  You both have rolled over a couple of times from tummy to back, but I don't think it is on purpose yet.  No rolling over from back to tummy just yet.

Working hard at tummy time!

Rhett-your favorite time of day is morning.  You are so happy and chatty all morning long!  You enjoy your bath and giggle as soon as I undress you and carry you into the bathroom.  Your favorite toy is your ball.  You usually want mommy to hold you, but like sitting with daddy in the recliner when he gets home from work.  Rhys-your favorite time of day is morning too.  You are smiling when I get you out of your crib.  You really smile most of the day!  You like to move around and observe everything that is going on.  You like playing with your elephant and play gym.

You weigh 16 pounds!  You wear a size 2 diaper and 3-6 month clothes.  We love listening to you laugh and "talk" all day long!  You even talk to the ceiling fan in our living room!  You are still spitting up ALOT but since you are gaining weight so well, your doctor is not worried.  You still seem very laid back and are usually calm and still.  You are our little talker and we love listening to your stories!

This is the face you make all the time!

Rhett relaxing in the tub!

You weigh 13 pounds, 15 ounces.  You wear a size 1 diaper (almost in a size 2) and 0-3 month clothes.  We love watching you try to "talk."  You are so happy and content.  Your hair is growing, but only on the top!  It is a little baby mohawk.  It looks like it might be blonde or maybe red.
Rhys' mohawk

all smiles after a bath

*You went to your first wedding this month and loved meeting Taylor and Paige.

*You went swimming for the 1st time in Sugar's pool.

*You started sitting in your Bumbo chairs.

*You had your first sleepover at Uncle Mike's apartment (when our a/c went out at 10pm!)

We just love being your parents and watching you learn and grow.  Thank you for being patient with us as we learn together.  We love you R&R!

Mommy & Daddy

Friday, August 12, 2011

First Wedding...WHOOP!

Last weekend, we loaded up the babies and headed to Sugar's house.  We had a wedding to go to in Houston on Saturday night, and my mom agreed that we could stay with her (if we brought the babies!) Ha!

Originally we were going to leave the babies with my mom while we went to the wedding, but I let Tim talk me into taking them.  I was worried about getting their early, finding a place to feed them, and then them being up late and getting fussy, screaming through the vows, etc.

Despite my worry, they both did great!  Rhys sat in daddy's lap and smiled and giggled through the whole wedding.  So girly already!  Rhett only stayed for about half the wedding, and then decided making loud sounds was more fun (such a boy!), so he and I walked around the beautiful courtyard outside.

  R&R with the happy bride and groom

We were so blessed to see some old friends from A&M and introduce them to the twins.  We were also thankful that we got to spend some time with a few high school kids from our church.  We enjoyed visiting with them over dinner and hearing all about their plans for college.  We also appreciated their help with the babies!
Rhett hanging out with Chase, Kelsey, and Brenden

Thanks Kelsey for giving Rhys her bottle!

Rhys with the beautiful bride Paige

Rhett with the groom, Taylor

The wedding was gorgeous!  Both Taylor and Paige are big-time Aggie fans.  Each chair in the reception had a 12th Man Towel hanging over the back of it as a wedding favor.  It was so cute!  The guests waved them as Taylor and Paige left that evening.

Cutting the cake

This cake was SO good!  I absolutely love wedding cake, and this was one of the best chocolate cakes I have ever had.  It had a peanut butter icing...YUM!

We had a great time and are so happy for Mr. & Mrs. Kauffman!  And the twins have now attended their first Aggie wedding.  "WHOOP!"  (That's for you, Paige!)