Friday, July 27, 2012

My Beautiful Teacher

As we drove home from Rhett's appointment in Austin today, I started thinking about just how far Rhett has come.  He has made so much progress and been through so much in his short 16 month life.

It all started with the twin pregnancy.  It can't be easy to be sharing a womb with someone else!  We knew early on in the pregnancy that Rhett was trapped low in my pelvis.  We had no idea that he was stuck in such a way that he couldn't move.  We also didn't know that his head was turned to the left, and that his little neck muscles on the right side were not developing.  Thankfully enough, though, we did not have any major complications and the twins were born at 37.5 weeks.  The twins did not have to spend any time in the NICU, and came home with me 4 days later.

Those first few weeks at home are a blur.  I remember nursing them.  A lot.  And I remember staring at them while they slept to make sure they were breathing.  A lot.  And the spit up.  Oh, the spit up.  And all the laundry, mostly due to the spit up.  Rhett was finally diagnosed with acid reflux at 4 months, and put on medication at 6 months.  But the amount of spit up we witnessed in those early

At the twins' one week appointment, our pediatrician noticed the tightness in Rhett's neck muscles and gave us some stretches to do with him.  And we did them, probably twice as much as we were told to.  Then at the two week appointment, there was no improvement, so we were given a few more positioning exercises to try.  At one month we started discussing therapy, and at 2.5 months we took Rhett to his first physical therapy evaluation.  Watching my baby scream while a therapist turned and twisted his little head gave me chills.  It was hard to fight back the tears appointment after appointment, week after week.  We continued on with slow progress.

At 4 months Rhett was in weekly therapy and we were spending hours a day working with him at home.  We were also really starting to see his face change, with one cheek looking fuller and his eyes and ears not aligned anymore.  It was difficult to find a balance between therapy with Rhett, and giving Rhys the attention she needed and deserved.  While my friends were going to play dates and the zoo with their babies, I was making appointments to see specialists or at home listening to my baby cry as I stretched and did his therapy with him.

At 5 months we got Rhett fitted for his first DocBand.  The helmet was going to help with the facial asymmetry and plagiocephaly (flat spot), but it was not going to take away the physical therapy or other issues that we were noticing.  It was at this age that we noticed Rhett was not doing the things that Rhys was doing.  He was not reaching for things, holding things, chewing on things.  He didn't move his arms much at all.  We were worried.....was it related to his head shape?  Was it something else?  Fear became such a part of my day as I watched and waited for appointments to help explain what was going on.

At 6 months, we had a follow up appointment with our pediatrician.  I will never forget that visit.  She started out by saying that she thought Rhett might have Cerebral Palsy.  I don't remember anything she said after that.  I was numb.  My mind was racing.  What would we do?  What would life be like?  Why was this happening?  Would Rhett walk?  Would he use his hands?  Would he throw a ball?  Would he be in a wheelchair?  I was consumed with fear of the unknown.  We made an appointment with a neurologist to confirm, but we were going to have to wait 3.5 months to get in to the pediatric neurologist.  And 3.5 months is a LONG time to wait when it is about your baby.

I started educating myself as much as I could and doing every single type of therapy they told me to.  Any little thing I could do, I did it.....we did it, and we started seeing improvement.  Month by month we saw progress as we waited for the appointments.

Then we saw the neurologist, and our minds were put at ease.  Rhett was given a diagnosis, but it was not CP.  He was diagnosed with Developmental Dyspraxia.  We left that appointment feeling relieved and thankful, but still a little uncertain as to all the challenges Rhett would face.  Rhett continues to make progress, but every little thing has been HARD for him.  Learning to sit.....hard.  Learning to roll over.....hard.  Learning to crawl.....hard.  He works so hard each and every day.  I'm so thankful that God blessed him with a strong will and great determination.

If I knew then what I know now, would it have been easier?  Probably.  But part of the journey is waiting, and growing, and relying on God through the tough times.  We feel so blessed at how well Rhett is doing now.  As I continue to take Rhett to appointments, I see other families facing much more than we have had to deal with.  But this has been our journey, and for us, it has been a struggle.

I read somewhere that parents of special needs children lose the illusion of control early.  Parents of typical children often are fooled into thinking they are in control of those little lives, that this action will beget this action, that they are in charge.  I know we felt that way with both the twins.  The article said that the illusion is shattered in early teenage years but especially in the beginning the illusion is there.  For kids with special needs there is no illusion.  You are thrust into a world of unknowns, a world that we knew nothing about but were part of just the same.  I always thought that if I did things a certain way, that things would turn out okay, that life would go the way I wanted, and that I would be in control.  So not true.

My little boy has taught me so much.  I know that this has all been a blessing, though not one I would have ever asked for.  I've learned that our marriage is strong, that God gave Tim qualities that I would need through this process.  I learned that family and friends can be and are a source of strength and encouragement on the hard days.  I learned that I am not in control.  Rhett has taught me that each day is a new beginning, a new day to start again.  I have learned that I serve a mighty and faithful God, who  will never give me more than I can handle.  I learned that my faith is strong, even though I sometimes am weak.  I have learned that God is big enough, his grace is sufficient.  

Even though Rhett is no longer wearing his helmet, we are not "finished" yet.  He still has Dyspraxia and always will.  I have just been thinking a lot about where we have been and where we are going.  There are still so many unknowns right now, and we don't know what struggles Rhett will soon face.  I know that it will be okay though, and I don't need to have all the answers.  I sometimes want them, and struggle to find them, but I have peace in my heart.

Thank you, Rhett, my beautiful teacher, my beautiful baby boy.

Saturday, July 7, 2012

R&R at 15 Months

Time seems to just be flying by!  R&R are now 15 months old and so much fun!  I am amazed at how quickly they are changing.  At times, I wish I could make time stand still so that I can enjoy the moment just a little bit longer, and other times I can't wait to see what they will do tomorrow.  We are enjoying all the crazy around here!

Rhys -
Weight:  21 pounds, 5 oz (25%)
Height:  30.25 inches (42%)
Clothing:  12 months
Shoe Size:  3-4
Diaper:  size 4
Teeth:  8 (4 top, 2 bottom, 2 bottom molars on their way!)

This girl is hilarious!  Rhys has really been loving on her stuffed animals lately.  Her favorites are her pink poodle (thanks Bdad & Gram!), her pink pig (thanks Elijah!), and her bear lovey (thanks Lorri!)  She is usually carrying around at least one, if not several of her animals.  If she sees one across the room, she immediately starts sucking her thumb and goes for it.  She will lay it against her cheek and give it a little snuggle!

 Rhys spends her days roaming around the house.  She will play with her toys occasionally, but she really just likes to walk around and look at things.  It cracks me up!  She is so observant and notices any little thing that is different.  Rhys walks really well, and is practically running everywhere!  She seems really coordinated and can throw a ball and climb on almost anything.

Rhys likes to sit in small places or in things.  One of her favorite spots is on this little window sill.  

She also likes to be in boxes, laundry baskets, etc.  Here she is doing a little morning reading.

Rhys usually picks out one little toy in the morning and carries it around all day.  I wonder if it is a security thing, or maybe it is just something that she has for herself that Rhett can't play with it.  I don't know the reason, but it sure is fun to watch.  This little green ball is quite often the toy of choice.

Rhys babbles all day long, and loves to have long conversations with Rhett.  The only word we actually recognize is "dada."  She points to Tim when she says it and will say it when he leaves the room.  She is using a ton of sign language!  She now knows the signs for please, thank you, eat, more, milk, all done, bath, sleep, brush teeth, water, banana, ball and wash hands.  She can communicate quite well.  She does a lot of pointing and still labels most objects as "duh duh."  Rhys uses the sign for please all day long.  She will point to something, say please, and wait for it.  If we don't give it to her, she will continue to do this.  :)   It is cute for a while anyways.  Ha!  My favorite is when she signs "thank you" even when I don't ask her to.  Love this!  It is funny watching her sign to Rhett.  He does not usually give her the toy he is playing with, even when she says "please."  Tonight in the bath tub he was splashing water with his feet and she kept signing "more" to cute!

If I say, "where is ______,"  she will put her hands up to the side of her and start looking around the room.  It is so cute!  If she actually knows what I am looking for she will bring it to me.  She seems to understand when I ask for a book, her puppy, her bunny, a diaper, sippy cup, a blanket, and her ball.
 "where is ___?"

 We have also been practicing a few body parts.  Rhys will point to her hair, nose, ears (sometimes), and her favorite....belly button.

She loves to clap when we praise her, and she even claps for Rhett when he does a good job, too.  Rhys adores her big brother!  She likes for him to chase her, and brings him toys all day long.  She really enjoys it when he laughs at her.

I am in love with my sweet Rhys Kate!

Rhett - 
Weight:  24 pounds, 2 oz (44%)
Height:  30.75 inches (37%)
Clothing:  12-18 months
Shoe Size:  4
Diaper:  size 4 (but wears a size 6 at night!)
Teeth:  a lot!  12 (4 top, 4 bottom, all one year molars are in) and still drooling....

Rhett is a busy little guy!  Ever since he started crawling, he just seems to get faster and faster!  He is now pulling up onto everything and cruising around the furniture.  He is also playing more on his knees and sitting in a half kneel position.  He loves trying to keep up with Rhys.

Rhett is very independent and likes playing by himself.  He will chase a ball, stack blocks, or push around a car for a long time before getting bored.  His favorite toy lately has been his ball popper.  When the music starts, he starts dancing.  So cute!  If he is across the room and the music (or any music) comes on, he starts bouncing those little chubby knees.  It might look something like this:

(sorry I can't get it to flip!)

Both twins, but especially Rhett, like to look out the front window.  It seems this window sill is just the perfect size for them.  

Notice I now have one broken shade.

Rhett has been in a phase lately where he gets really shy around people.  He will bury his face into our shoulder, crawl away and hide, etc.  It just takes him a while to warm up to others.  He is also very funny with his facial expressions.  This is one we see a lot....

And yes, I know that my son is not wearing pants or shorts in many of these pictures.  It is because he is too busy!  He doesn't want to be bothered with a diaper change, much less putting the shorts back on.  Unfortunately for him, I do still change his diaper.  I feel like I am wrestling an alligator when I do it, but I survive.  However, we don't always get the shorts back on.   :)

He also has a very contagious and cheesy smile.

Rhett also babbles a lot, especially in the afternoons.  He really gets excited when he hears a dog barking.  We don't have dogs, but our neighbors do, and we hear them often.  He will open his eyes wide, look out the window, and say "buh!"  He also says "boom" when he hears any kind of noise.  He mimics a lot of sounds we say, but doesn't have any real words yet.  Rhett has finally started using a little bit of sign language with me.  He will sign milk, more, and please.  Although sometimes I think he gets a little confused.  When I was trying to get him to smile for a picture, I said "say cheese," and he signed "please."  He also started waving bye-bye this month.

He still loves his milk, and he still steals Rhys' milk whenever he can.

The boy LOVES to look out the front window.

Playing with Rhys' bracelets while she's not looking!

Here is my cheesy smile again!

Love, love, love this boy!

We have been playing outside some, even though it is so hot!  Our backyard has a lot of shade, and so it does help.  It seems like someone is always eating something when we are outside, whether it be a stick, rock, leaf, dirt, etc. 

Playing on daddy's kayak... 

Trying out the dirt...

What....I didn't eat the rock...

I bought the twins this little shopping cart from a mommy friend, and they love pushing it around!  I don't think they understand what it is for just yet, but it is something fun to do.  We always put a baby in the cart.

Here is Rhys with her baby...

And Rhett with his baby...

The twins do play really well together.  Here they are stacking and knocking down cups...

Playing in a tub of beans...

Climbing the stairs...

Sharing a chair (again, Rhett is shorts-less)...

And enjoying an afternoon snack...

Sometimes, while he is playing, Rhett will just lay down for a few minutes and giggle, and rest, I guess.  Rhys immediately goes to him, lays down, and starts sucking her thumb.  

And again....she loves her bubba!

The twins got sick this month!  :(    They both woke up the same morning with a high fever.  They didn't have any other symptoms for 3 days except fever.  Then the runny nose, cough, and congestion started.  It was a sad sight around here!  Daddy got sick too...

This is how we spent our days...

 We had already had the twins' 15 month well-baby check scheduled so we were able to get them checked out.  It seems they just had a little virus.  The runny nose/congestion lasted about a week and a half.  Yuck!

Our schedule at 15 Months:
7 a.m.  Wake
7:30  Breakfast
9:00  Nap
10:45  Wake
11:30  Independent Playtime
12:00  Lunch
1:45  Nap
3:30-4ish  Wake and snack
5:30  Dinner
6:30  Bath
7:00  Bed

I am really loving this age and all the fun things that the twins are learning and doing right now.  Still can't believe it has been 15 months since we brought those tiny babies home from the hospital!  We have a lot planned the next few weeks....stay tuned!