Wednesday, February 29, 2012

Sad or Cute?

Brenna received a Dr. Ken, Barbie, and baby set for her birthday.  Camdyn was checking out sister's new toy with Aunt BB.  Camdyn handed Aunt BB the baby to hold while she took Ken's stethoscope and placed it on the baby's chest. 

She waited a while and then flipped the baby over for Aunt BB to hold again. She then took Ken's stethoscope and placed it on the baby's back.


After a little while longer, she picked the baby up and started hugging, patting, and rocking it - comforting the baby just like mommies do when their babies go to the doctor.  (Excuse Camdyn's messy hair; I don't know what it's trying to do here!)

When the doctor tried to measure Cade's length at the last appointment, he put his hands up in defense.  He figured she was trying to give him another shot.  Poor guy! 

I took Brenna to the doctor for a cough this week.  Camdyn clung (as in permanently attaching herself) to me as soon as we walked in the office.  I could see the look of fear on her sweet little face.

It's so sad that they have both developed such a fear of doctors, but I don't blame them.  They have been seen by more doctors and specialists than most adults will see in their lifetime, and they aren't even 2 yet! 

Monday, February 27, 2012

18 month developmental tests

The twins went in for their 18 month NICU follow-up clinic developmental tests.  They are 22 months actual, but the tests are based on their adjusted age of 18 months.  Overall, I was impressed at how well they did at completing each task.  The appointment was over 2 hours long!  I like that it is very extensive.  I had to first fill out a 4 page survey of questions for both kids.  They test them in the areas of gross motor, fine motor, speech (expressive and receptive), cognitive, and social skills.  In addition, they do a quick neuro exam and check for any concerns in their overall development. 

Cade now weighs 24 pounds, and Camdyn weighs 19.5 pounds.  They are not concerned about Camdyn's tiny stature because she is following her own growth curve and growing at her own slow, constant rate.

This time Camdyn was more into testing than Cade.  Cade seemed more interested in finding a way to escape (i.e. opening the door and walking out).  I know that Cade is capable of performing several of the tasks he was asked to do, but he just didn't feel like it that day.  Both Camdyn and Cade are right where they should be in all areas for their adjusted age of 18 months.  Camdyn was a bit lower in speech skills but still on target; however, she scored "high average" in cognitive abilities.  I was really excited about this.  It's hard to know what her little brain is thinking since she doesn't speak much.  Cade scored "high average" last time but "average" this time since he was not cooperating.  Either way, I was very excited to hear the results.  It's hard not to compare them to 2 year olds since they are almost 2.  When I see them around other kids their age, I think they are so behind, so it was nice to see that they aren't too far behind.  I feel so blessed that they are doing so well.  We are very grateful and praise God every day!

Here are some cute pictures of them at their appointment.  I was fortunate to have my mom come to this appointment with me.  With such a long appointment, I knew I was going to need some help corraling the kids.

Camdyn stacking blocks. Cade was more interested in crashing the blocks than stacking them.

Camdyn doing a puzzle.  Cade thought the puzzle made a great pond for the duck.  If you ask me, I think he should have received some points for creativity!

Wednesday, February 15, 2012

In other fun news . . .

Cade and Camdyn thought it was tons of fun to try on Daddy's boots. 

Brenna looking cute before pre-school.

Isn't it funny how a mixing bowl and a plastic strainer can be so much more fun than a whole room full of toys?  They were playing peek-a-boo with these bowls.  It was so cute!

Today, I finally saw the twins actually playing together.  This is a first.  They definitely interact with each other, but it usually consists of fighting.  Cade typically steals Camdyn's toy or bottle and she squeals.  Then I tell her to go get it back; fight your brother for it.  It's probably not the best mommy advice, but I want to teach her to stand up for herself.  I don't want her to get picked on since she is so tiny.  So we practice standing up for herself against her bully twin brother a lot, but in this video they are actually playing together even though Camdyn is more interested in her bottle than playing ball.  I love it!

The biggest news of all - Camdyn has enough hair to make the tiniest, cutest, most adorable little pigtails now.   This is big news considering how long it has taken her to grow some hair.  At one year old, she was still nearly bald.  At 18 months, she had a little hair.  Now at 22 months, we can make two tiny pigtails! 

12 months old

18 months old

22 months old - Take One

Take Two

Our "Romantic" Dinner

For Valentine's Day, Brenna decided we should have a "romantic dinner".  Those were her words.  I have no idea how she knows that we should have a romantic dinner on Valentine's Day.  I asked her what that meant and she said we should put a candle on the table and wear fancy dresses.  After we bathed, I was putting on my pajamas, and she told me, "No Mommy, you have to wear a fancy dress."  Even though I would have preferred pajamas, I put on a dress to make her happy.  She went into her room to put on a dress too.  Then we came out to show Daddy how pretty we looked in our "fancy dresses".  We put the babies to bed, and then she helped cook dinner.

And here is our romantic table with a candle and some flowers that one of my dance students gave me.  She was so excited about our "romantic dinner".  It was very cute.  We all enjoyed our Valentine's dinner.  I told Daddy we should remember this now because she won't always want to spend her Valentine's Day with us at home having a "romantic dinner".

Waco Children's Museum

I am really behind on my blogging, so I am going to have to play a little catch up.  Last weekend, we went to Waco.  We were planning on going to the zoo there.  Well, the weather in Texas is highly unpredictable - a few days prior temperatures were in the 70s, then over the weekend it got really cold and even snowed here on Sunday (unheard of in our parts), and today it was 79 degrees again.  We decided to go to a museum at the last minute.  We didn't expect it to be very good, but we were pleasantly surprised.  It was awesome!  We will have to make a trip back to Waco in the spring to visit the zoo and the museum again.  These were all taken with my phone so the quality isn't so great.

Daddy and the kids checking out the train.

Camdyn driving the fire truck.  She was too busy to look at me.

Cade driving the school bus.  He was very excited about this.

They had the cutest little town set up with lots of little cars.  Brenna is pulling Camdyn over in the police car for speeding.  Ha!  Her tiny legs barely touched the ground.

Cade checking out the guinea pig.  He loved the animals.

my pioneer babies.  They did not want to sit still for a posed picture so I had to snap it and say good enough.

Brenna as a pioneer woman.

The kids playing in the tea room.

The kids experimenting with grinding corn.

There were tons of other cool rooms including music rooms, cultural rooms, and bubble play rooms, but I was too busy chasing them, even with Daddy's help, to take more pictures.  I just kept thinking that a day at the museum was worth weeks of therapy with all of the fine motor skill manipulatives and sensory play areas.  I wish it was closer; we would be there all the time.

Wednesday, February 8, 2012

I Love My Former Tubie!

This week is Feeding Tube Awareness Week, and although we no longer have a "tubie", we've been through it.  I'm posting this to help raise awareness of tube-fed kiddos.  There are several reasons why kids won't eat - for some it's because they don't have the oral motor skills to do so, some have severe acid reflux or gastrointestinal issues that make eating painful, some have neurological issues that cause them not to eat, and some (as in Cade's case) have severe oral aversion or swallowing issues or both.  People who don't understand what it's like to have a tube-fed kid may think that the kid just isn't hungry.  People even offered suggestions, "Have you tried __?" or "Well, if he gets hungry enough, surely he'll eat."  For tube-fed kids, it just doesn't work like that. 

When babies are born, the first thing they do is nurse or even take a bottle in their mother's arms - both pleasurable experiences for the newborn.  For micro-preemies, their first experiences in the world are breathing tubes placed down their throats.  This is followed by feeding tubes, suctioning, CPAP masks, and nasal cannulas.  They often develop oral aversions because everything that has been near their mouth is undesirable.  The last thing they want to do is put anything in it.  For Cade, he also had vocal cord paralysis due to his PDA surgery.  When he swallows, the right (working) vocal cord does not fully meet the left (paralyzed) vocal cord which can result in aspiration (food going into the lungs instead of the stomach).  He still uses sippy cups with stoppers or slow-flow nipples to avoid aspiration.

Looking back, I noticed that several of my posts revolve around our issues with feeding.  For those interested, here's a look back on our journey.

All I Want for Christmas is My G-Tube
Cade and the Adventures of His Evil Ng-Tube
Cade's Surgery
A Beautiful MESS!
Cade is EATING!
We lost something today . . .

They don't make a "I love a former tubie" so I'm posting this one.

Two Tubies - Both babies came home with ng-tubes.  Camdyn had hers for a little over a month after coming home until she started taking more volume.

Cade the night before his surgery.  I remember crying as I took this picture even though he's smiling at me.  I kept thinking that his tummy would never look like this again.  I'm sure my tears had more to do with the anxiety that I was taking my baby boy back to the hospital for another surgery than they did with the future scars he would have.

Here's a picture of what a g-tube looks like.  This is not a picture of Cade.  I found this on the internet.  I never took one of his tummy with the tube. 

Cade after surgery.

Cade after the tube came out.

Cade now with no tube.  You can see the scar on the left side.  I still plan on having a scar revision done.  Cade always looks even skinnier than he is because of the way his ribs are formed.  His ribs actually expanded when he was on the ventilator.  His bones were so pliable and fragile that the pressure from being on the high settings of the ventilator caused his rib cage to expand and form this way.  His doctor assures me that it does not affect his lung function at all.

We feel very blessed and fortunate that our journey with tube-feeding was relatively short compared to what many tube-fed kids face.  We pray for all those families who are undergoing tube surgeries, tube weaning, and feeding therapy.

Thursday, February 2, 2012

No Winter Here

We have been enjoying our unseasonably warm winter here in Texas.  Today the temperature was in the 70s, so we met some friends at a nearby park.  The kids had fun blowing bubbles and playing on the playground.  It is so much fun to take the twins to the park now because they are really into it.  They love climbing and sliding on the playground instead of just sitting in the mulch and playing with it/eating it like they did last summer.  Brenna can even play with her brother and sister on the playground now.  She loves sliding with Camdyn.  It's very sweet.  After months and months of physical therapy, I find great joy in watching the twins manuever their way up the steps, over the bridge, and down the slides.  I am one proud mama!

Camdyn trying to blow bubbles.

Camdyn and Cade working on trying to get their bubble wands in the bubble jar.

Cade blowing, but he didn't produce any bubbles.  He sure looks cute trying though!

Brenna swinging.

Brenna taking Camdyn for a ride down the twisty slide.

I'm sure I am the only one who finds these videos entertaining, but Camdyn and Cade have worked so hard in physical therapy to get to this point that I just had to include these videos.