I Saw Him Standing There

Carter gets something set in his little mind, and there's no changing it!  I'm pretty sure he gets that stubborn streak from his father.

Right now, we're supposed to be working on rolling and sitting. 

Seems reasonable, right?! 

Nope.

Carter is only interested in standing.  He's all about practicing his weight bearing on my lap, OR in the Exersaucer.

In other news, his bloodwork came back from Endocrinology and there are a few things that measured low, but still within normal limits.  We have to go back in April for another blood and urine test.

Mikey and Jovie have been sick with a virus that gave them a nice sounding cough and fever.  So far, Carter seems to have only contracted a minor cough and is otherwise fine.  We'll just keep watchin' him.

We're quite excited for the Operation Smile 5K since it seems that the weather is going to cooperate (still keeping my fingers crossed). Can you believe that the little guy is going to be one this weekend?!

Playing

That's all the little guy has been doing lately!

Play.

Play.

Play.

Do you know how long I've been trying to get him to at least look at the toy bar on the bouncer?  For the first month that he was home, I'd try it at least once a day, and he showed absolutely no interest.  I then just started putting him in it once every week or so. He just needed more time, because this week he's LOVING it.  He kind of does a crazy dance in it to make himself bounce up and down.  So cute!

Yup, that's Carter sitting alone in his boppy.  He probably only lasts about a minute without a little nudge to get him back up.  He's got a long way to go to get to sitting up alone, but I can see the light at the end of the tunnel.  I think the hardest part for him right now is that his spine curves forward making it hard for him to keep his balance.  I truly believe he'll get there though... I honestly didn't think that we'd be this far for another six months, so I'm EXTREMELY happy with the progress he's made in the last couple of weeks.

The Update On Carter

He has been one busy guy...that's for sure!  This could be a long post.

Where to begin... Where to begin.

Well, first of all, he has been working really hard on his sitting skills.  He can do it on his own if you sit him on your lap just right. Of course I always keep my hands close to him just in case.  I think that he's still a long ways away from being able to sit on the floor without help, but we're definitely on our way there.  I've been having him sit in his Bumbo chair to watch me cook.  It's good practice for him, and until recently he wasn't able to do it without getting really winded.

Overall, he just feels a lot more solid.  He is still working on the tummy time.  Carter has also found that he LOVES the game where you make him jump, or bounce on your lap.  It's sure to bring a grin and even a laugh at times.

He had an appointment with Dysphagia a couple of weeks ago.  For those who don't know, Dysphagia is a feeding clinic.  I was really excited for this one because I had a very positive experience at it last time.  This time around was completely different.  They weren't too happy with his weight gain, and with the things they were saying I felt as though they were blaming me.  I won't go into any more details, but I'll just say that Carter proved them wrong by gaining a pound during the next two weeks and that was without me changing his diet at all.  He's now up to almost 15 lbs which his pediatrician is thrilled with.  If you look at his growth curve, it is obvious that he's starting to catch up. Keep on keepin' on little buddy!

We had an appointment with the plastic surgeon yesterday.  It was supposed to be an appointment where we were going to schedule his next surgery, but it turned into something scary.  This doctor is typically very mellow and doesn't rush into anything.  Michael and I could tell that something was off when the doctor came in to talk to us, and didn't take his eyes off of Carter even while he was talking to us.  He then walked over and started feeling Carter's skull.  The doc wanted to know if he had ever had a head CT done...which he had in the NICU.  The doc recommended that we get one done immediately since he suspected that Carter might have Craniostenosis . This is when the sutures in an infant's skull fuse too early causing pressure on the brain.  It can lead to severe brain injuries.  Needless to say, that was one LONG hour while we waited for the results. It reminded me of the days of the NICU.   Thankfully we ended up with good news.  The sutures in his forehead have fused early, but the doc said he wouldn't do anything to fix it and he wouldn't even recommend a helmet.  Thank you Jesus.  That could have set Carter back unbelievably far.  We still don't have the date set for his surgery since they had to coordinate with different doctors, but should find out soon.  All that we do know is that it will be in May, and probably on a Monday.

We have a lot of appointments coming up. On Tuesday we are getting another ultrasound on his kidney and the Adrenal Hemorrhage, then Urology, then ENT.  On Wednesday we see Opthalmology.  The following week we are seeing an Endocrinologist to get all of Carter's hormones and glands checked.  Our pediatrician recommended that we get an overall checkup on this since he is having problems with his Adrenal gland.  The next day we have an appointment with an Orthopedic surgeon.  Carter has a part of his spine that bows out.  It's most likely either C-shaped Scoliosis, or Kyphosis.  I'm guessing that he'll proably need some bracing, and I'm praying no surgery is needed, but if it is...bring it on!

The little guy was very popular lately/  He got one package in the mail last week,  and got TWO packages today.  Nobody else got mail today, it was all about Carter. 

Last week he got a special needs nipple like I showed you here: Special Needs Feeder.

Carter's little friend, Carter (how ironic!) has had his soft palate repaired, and didn't need it anymore.  Thank you Carter!!

The next thing he got was from my good friend April . 

Woo Hoo! (Michael was thrilled!)  Thank you April!

Then he got a package from his good friend, Jaxson.

It is a blanket made special for Carter by Jaxson's Blankies For Babes

Isn't it just precious?!  I couldn't get him to throw out any smiles, but I assure you that he LOVES it. Thank you so much Jaxson.  We're always praying for you little buddy!!

Just What I Needed

A glimmer in his eyes.

A smile.

A giggle.

When we play our new game Peek A Boo.

He's so sweet. Seriously.

The Story Of Rude Off and Head Lifting

Meet Rude Off

He was purchased two years ago at a thrift store.  His nose would light up and he would sing his theme song when you pushed his belly.  Rude Off has been attached to this little girl since the day that he came home with us.

She grabs on to both sets of legs and makes him fly through the air just like the movie.  He sleeps next to her all night long.  He gets stuffed into her purse. Poor Rude Off.  He's been through the washer so many times and gets thrown around all day long.  His nose no longer lights up, but his song still plays.

Rude Off has been making trips to see little Carter.  Little Carter doesn't understand what's so special about Rude Off, but maybe he will one day. For right now, all that Carter can concentrate on is lifting his head while he's on his tummy, and guess what....he's finally starting to do it!!  You have to lay him on his elbows, because he doesn't know how to move those into position yet, but he can lift his head for at 30 second intervals while he's propped on his elbows now.  Go little C!

It Doesn't Get Better Than This

Look at that face!  He smiles so big that it scrunches that left eye almost shut.  He's even got a little dimple on the top of his lip on the left.  I LOVE IT!!  It's my new favorite spot to kiss.

We're still just moving along here with Team Carter. He's seriously kicking butt with reaching out and grabbing things.  He loves to play some new games with Daddy.  Carter's getting more and more fun to play with.  We've been doing a lot of sitting practice, and still working on lifting that big ole' noggin when he's on his tummy. He's making slow but steady progress.  He went to the Pediatrician for a checkup and we found out that little C now weighs 14 lbs!  He's not even close to being on the charts for his height and weight, but his head size is in the 70th percentile.  No wonder he has so much trouble lifting it. The Pedatrician thinks that C is doing well, but because of the Adrenal Hemmorhage, he thought that we should see an Endocrinologist for a checkup on all of his hormones and glands.  I made the appointment for after the next ultrasound so she would have up to date information on his situation.

We have a lot of upcoming appointments including the one where we'll schedule the date for Carter's next surgery.  I have mixed feelings about it.  I'm certainly not looking forward to the hospital stay, but am very anxious to have it over and done with.  There are a lot of doctors who think that the soft palate closure is going to help him with his vocalizations, eating, and most importantly breathing.  I'm trying really hard not to get my hopes up, but sometimes it's hard not to.

Brotherly Love

So sweet!  Mikey is one of Carter's biggest fans.  He gets excited about everything the little guy does, and reports stuff to me all of the time. I couldn't get a decent picture of these two together because as you can see, Carter loves to touch faces now.

The little guy has kept me busy this week with a lot of therapies and just plain ole' playing.  Here are a few pics of him in his crib.  There are a few things that are really exciting about these pictures.  Can you guess what they are?

OK, I'll just tell you.  The first thing is that he's smiling.  Awww. So cute!  He's smiling at the drop of a hat now which is so nice. What a happy guy! 

The second thing is that he's watching his mobile.  Just within the last couple of weeks has he shown any interest in it. I remember that Mikey loved his mobile, and I suspect that Carter is going to be the same.

The third thing is that he's laying on the back of his head and staying there.  That seems like something that should come easy to him, but he's just barely starting to do this as well.  The way his skull is shaped makes it hard for him to do this, so even if you look through old pictures on this blog you'll notice that he's almost always on his side. We're so proud!

We had vision therapy yesterday and hearing therapy today.  During vision therapy we learned that Carter REALLY likes the touch and feel books.  We'll definitely be ordering some of those.  I also pulled out our portable DVD player and tried out some Baby Einstein yesterday, and he's definitely a fan of that too.  It's so nice to see him liking new things.  It looks like he's finally moved on from his swing.  We're still working diligently on the tummy time stuff. Today he lifted his head three separate times while he was laying flat on the ground.  He can do it easily when he's propped on the Boppy, but this was the first time he did it on the ground.

New Headbands

I got sick of the Aunt Jemima look.  The last straw was when Carter's Occupational Therapist came in and asked how little Carter Jemima was doing today.  OK, he said it in the most loving way, but I knew it was time to move on from the denim headband.  So, we went from Carter Jemima...

To Carter Barkley

Here's the thing with Carter's hearing aid.  Not many people use this type. I think that his Audiologist said that less than 2% of people do, but in Carter's case of small or missing ears this is what we have to use. There is one website that makes headbands, but they are $25 each and there aren't too many color/print choices.  I'm not so much into putting fire truck fabric on my kids head. I decided to try out some adult headbands, and this one was on clearance, so it was my prototype.  No worries, I'm not going to let the kid run around with a big ol' NBA logo on his head.

Want to see how his hearing aid even works?  I realized that I never really explained it before.

Here's the first part of his hearing aid.  It is called an Oscillator.

This sits against the bone behind Carter's left ear (his good ear).  Basically it vibrates the bones behind his ear and sends sound straight to his inner ear.  His left ear is abnormal somewhere in the middle ear or in the ear canal which causes his hearing loss on that side.  On the right side (where he has no ear), his ear has no ear canal, but does have an inner ear.  The cool thing about the Oscillator is that even though he only wears it on one side, it sends info to both inner ears.  I have NO idea how that works, but it does so just roll with me on that one.  When you try it on, it sounds like you have a little radio inside of your head.  It's kind of fun.

The Oscillator is connected to a brown cord that I had to string through the inside of the headband to the hearing aid which sits on the front of his forehead.

I had to cut a hole to tuck it in. This is just a traditional hearing aid that you typically wear on your ear.

This one is like Carter's except it doesn't have the ear mold that sits inside the ear on the end of the white.  Carter pretty much uses his hearing aid as a microphone to send the sound to the oscillator.

So, to make the headbands (just in case someone ever needs to make one), I had to cut it and hold it up to his head to make it tight enough to hold the oscillator to the bone. Then I sewed it back together again. The rule of thumb is that it should leave an imprint on his skin when you take it off.  I try to change the position of it every day to be sure that he doesn't get any sores.  Next, I had to sew a tiny piece of velcro on the inside to hold the oscillator in place.  Finally, I cut a tiny slit on the inside of the headband where the oscillator comes out, and in the front where the hearing aid sits then feed the wire through. They only take about 10 minutes to make, and I got him all kinds of colors. Honestly he seems MUCH more comfortable as well.  The only problem that I can see is that it may get a little hot in the Summer. I'll tackle that problem when we get there.

Here he is sporting his new Under Armour one.  What a little stud muffin!

I tried out the Exersaucer for the first time in a few months.  He started out awesome.  Look at him all nice and straight.

Then after about 4 minutes he looked like this.  "Hey good lookin', whatchu doin'?"

Then by 8 minutes he had given up

I'm thrilled with the fact that he lasted that long.  He's been grabbing things more and more.  I can't believe how far he's come with it in just a few days.  The Occupational Therapist had the idea to attach bells to each of the toys that hang on Carter's play place to make them more interesting.  Brilliant! Carter's all about making noise.

Today Was One Of Those Days

Where I couldn't get enough of my little guy.  He's finally starting to come out of his shell, and give his Momma some love back.  He smiles real big when I kiss his cheeks now which just makes me want to do it all day long. He loves to look at my face and try to grab my nose which is adorable during the day, but can get a little annoying when you are trying to cuddle with him at 3:30 in the morning and all you feel are tiny punches on your cheek.  I love every minute of it though! This morning he decided that he didn't need Oxygen anymore, and took his mask off.

For the record, these pics were taken in the morning and before bedtime when he didn't have his hearing aid on.  I've been very good about keeping it on him all day.  Carter also got to spend some guy time with Uncle Marty on New Years Eve.  Every time Uncle Mar would tug on his little foot, Carter would chuckle.  It was the cutest thing ever!

Carter did a VERY exciting thing yesterday when he very purposefully hit his monkey toy.  It was so funny because when he hit it, his long finger kind of got wrapped onto it's tail so he got a surprised look on his face like "whoa, look what I did".  He then shook it for a few seconds and let go.  It's amazing to me how something so simple could make me so happy.  The Physical Therapist came today and said that Carter is definitely getting a lot stronger through his trunk.  We even graduated to the next step with some new exercises. Hooray!

I'll be going on with my story next time, but had to throw in some current info on what our little guy has been up to.

Merry Christmas

I hope that everyone has a wonderful Christmas.  We sure have already.  Carter decided to give us an early Christmas present by giving us his first chuckle.  He's been doing it all day as long as you tickle his thighs or his feet. I guess he felt guilty for putting a damper on Thanksgiving.

Merry Christmas!

Vacation

Seriously, do you get much cuter than that?  I took his O2 off for his bath, and couldn't resist.  That's a typical Carter smile right there.  Awww.  Now, I want to go and wake him up just to kiss his cheeks. This picture makes him look like such a big boy.  Sometimes I wonder what Carter would be like if he didn't have a Chromosomal Disorder.  The answer is that he wouldn't be Carter.  I'm so glad that God sent us THIS little boy.  He's the sweetest thing ever!  As frustrating as things get with him, it's also so much more fun to raise a special needs child.  You get excited over EVERY new thing that they do. Even Mikey will come and tell me if Carter moves his hand in a new way, or smiles at him. It makes life much more exciting.

Today was our first day of vacation. OK, so we're not going anywhere, but Michael is off from work for the next ten days so we're counting it! On our first day of vacation we got our pics done for the Christmas card, and Michael finished putting up the Christmas lights. Exciting eh? That pic isn't going to be posted yet, but let me say that even with all of the flaws, I'm pretty impressed with it considering it was taken with a self timer and a tripod.

Carter had vision therapy today, but wanted no part of it. He's been doing really well with trying to roll over and hold his head up when he's on his tummy. The strength is coming slowly but surely.  I'm so glad that we started Physical Therapy recently.  I really think that it has helped him. I have it set so that his OT and PT come on opposite weeks, so Carter gets that type of therapy once a week. I also think that we're getting close to the first laugh. If anyone can make him do it, it's going to be Daddy. Carter's starting to really appreciate his jokes. At least someone does. (totally kidding Michael)

Thank You Lord

I didn't expect much from Carter's hearing aid.

In fact, I expected him to be very upset about it and not tolerate it.

I was WAY wrong.

I just played with Carter for the first time since we've been home, and he is a COMPLETELY different kid.  He's actually looking at me when I talk to him and not looking all around me.  He's smiling easily at everything I say.  I am floored.  Seriously, floored.  We are very thankful today.

Carter's Little Room

Carter's Occupational Therapist thought that a "little room" would be beneficial to Carter developmentally.  It is literally a "little room" that makes Carter feel safe in his environment while giving him a lot more feedback because every movement he makes will echo throughout it.  One of these can cost over $1000, but my very handy husband built him one and the best part is that it only cost $50!  We've been trying it out a lot the last few days, and I must say that it truly does work.  Typically, you would hang toys from the top for a baby with vision impairment, but for Carter we've been putting toys near him that he can hit.  Sometimes we put it over his play place as well.  It is sitting on top of a resonance board that his vision specialist brought which creates even more noise. The idea is to get him to start realizing that he can make things happen when he moves those little arms and legs. Here's a link to a website that gives detailed instructions on how to build one: http://www.wonderbaby.org/articles/play-area.html#how-make , but for the record.... Michael made up his own plans.  I just have to give him props where they are due :)

Welcome To Our New Blog

Thanks for checking out Carter's new blog!  We wanted to shine his little light throughout the world and this seemed like the easiest way.

Carter's had a good couple of days. I weighed him today and he's up to 11 lbs! He had an appointment with his Occupational Therapist who was pleased with his progress. He wants us to concentrate on strengthening Carter's tummy muscles so he can roll onto his belly. We're also still working on getting him to bat at toys. Later in the day we had an appointment with Audiology. Unfortunately, we didn't learn anything new. We just scheduled an appointment to get another thorough hearing test called an ABR done on October 6th.

Teeth?! Really?

OK, so I've been terrible about Blogging lately.  Sorry. Here's the update on what our little man is doing.

First, Carter was on steroids for five days to try and strengthen his airway.  They have seemed to work and he's doing much better although he still has an occasional bout with it tightening up.  Those moments are really scary so we're glad that they are declining although we would be happier if he didn't do it at all. We're just going to give him more time to heal.  The weaning of his Oxygen is going pretty well.  He's comfortable at a 1/4 liter which is about where he was way back before the Heart Cath.

Developmentally Carter has been doing some VERY exciting things.  He's started to focus on objects and turn his head to follow them.  He's also taken a liking to the TV (especially Football....not sure where he got that from lol!). As I type this, he's playing on the floor and looks like he's so close to rolling onto his tummy. His eating has been going well, and he weighs about 10 lbs. 10 ounces now.  The last week I've actually felt like I've had a "normal" baby for the first time.  He seems to be like a 3 month old which is about where he should be for his adjusted age.  Our next feat is to get him to start batting at objects.  He seems to be so close to doing it.

Today while I was playing with him I noticed a little white slit on the top of his gum.  I can't believe it, but our little guy has actually gotten his first tooth!  It is on his upper right.  I'm not sure which tooth it is because of the way his gum is shaped on that side, but I'm guessing it's his front right.  He's growing up quickly now!

On Monday he has an appointment with an Audiologist to find out how his hearing is now that the tube in his left ear has been placed. We're hoping for good news.  It would be nice if his hearing was excellent because it would mean that we might not have to do anything for the right ear.  We can only pray!

Mikey and Jovie have been enjoying school.  Life is certainly a lot busier once your kids are old enough to have activities.