Update

Proof that Amy takes awesome pictures, not that anyone needed any proof, but I love the ones she took of my boys when she came. More on these two later.

When we were in Iowa City we met with the Geneticist as well, that was on Wednesday. She spent a lot of time looking Caleb over. She measured his eyes, the space between his eyes, his ears, his head, his soft spot, his hands and fingers, his feet and toes, there was some crazy measuring going on. After her thorough evaluation she came up with a syndrome that she would most like to test for, it's called Goldenhar. Please don't Google it, it's kind of creepy. But it doesn't bother me so much if this is what's going on, because all of Caleb's symptoms and defects would be present now, and not show up in later years, and it has no effect on his physical or mental development. So he should be completely normal, except for the hearing loss, which isn't that big of a deal anymore (yeah!!).
This morning I got a call from the Iowa City hospital wanting me to come out and see the eye doctor because one of the defects is benign growths of the eye, so we have to go out in October. The lady on the phone told me the visit would be a minimum of two hours, not a big deal; I've been in waiting rooms for that long before!
I also saw Caleb's cardiologist on Friday, the one in town here, and he said that everything looks so well that we don't have to see him again until the beginning of November for him to check everything out before surgery. That was exciting because Caleb has never been that long without a cardiology appointment, two months, wow! (okay, I think it's closer to a month and a half)
And yesterday I went to our in-town audiologist to go over the results of Caleb's Iowa City testing from last week. She was very impressed and pleased. We have now readjusted his hearing aide and he's wearing it again. When she put it in he immediately responded. It was like night and day. All day yesterday, everything I said to him was just hilarious, he was in giggles all afternoon, it was so fun to see. He's still going to wear the headband as well; I'm just trying to come up with some inventive ways to remodel the band. I am not going to keep using the crusty Velcro tan thing he has, his hair always gets stuck in the Velcro. I'll come up with something, if anyone has any ideas, send them my way.

I need to document some completely random things my big boys have been saying lately. So the other day all five of us were driving in the car on our way home from the grocery store. (yes, we venture out quite often with ALL of the boys to buy groceries or wander Target for hours.)

Talin: Dad, who’s your favorite person in the whole world?

Tom: Mom.

Talin: (audible gasp and tsk) That wouldn’t be my favorite person.

Me: (LOUD gasping) What??!!

Tom: Who would be your favorite person then?

Talin: My favorite person in the whole world would be Jesus.

HA! Does this child ever cease to put us in our place? Who would your favorite person in the whole world be?

And then there's Collin who is a completely different personality from Talin. He came upstairs yesterday while I was getting ready.

Collin: Mom, I love you more than a google!
Me: Oh really, a google?
Collin: Yeah, I'll even love you when you're dead!
Me: You'll love me when I'm dead?
Collin: Uh huh, and I'll even love you when you're a grandma!
Me: Wow, you're so nice to love me even when I'm a grandma.

So funny. They certainly keep me entertained, but more importantly they keep Caleb entertained for me as well!

Caleb

Tuesday I’m sitting on the couch with Staci (early intervention worker) discussing Caleb.

Staci- “So how are things going with Caleb, do you get any responses from him when you interact?”
Me- “I’ve had a few experiences recently where I swear he hears me and responds differently. Like just the other day he was on Tom’s lap facing towards me when Tom made a silly noise and Caleb laughed out loud. He totally heard it.”
Staci- “Well was Caleb leaning up against Tom when he did the noise?”
Me- “Um yeah, I guess he was at the time.”
Staci- “Then he probably felt the vibrations from Tom’s chest when he made the noise and responded to that.”
Me- “Ohhhh…okay. But I’ve had other experiences. Like just recently I had him on my lap facing me and I was talking and laughing with him and he was jabbering back and laughing at me in response. Totally interacting with me. So I decided to test him and I did the same facial expressions, opened up my mouth like I was talking and smiled like I was laughing, but I didn’t make any noise. When I did that he immediately looked away and looked down and wouldn’t respond back.”
Staci- “Well you can feel vibrations in the air as well when you’re on someone’s lap and children that are deaf have their other senses heightened.”
Me- “Ohhhh…yeah, you’re probably right.” A bit deflated.

As of Wednesday my little boy had a severe hearing loss in his right ear, and a moderate hearing loss in his left ear. A severe hearing loss is difficult, almost impossible to aide, is the result of a damaged cochlea and hearing aides can only amplify distorted sound for a severe loss.
As of Thursday at 11:45 in the morning, my little boy has a mild to moderate hearing loss in his right ear and a fully working cochlea in his left ear. A mild/moderate loss is extremely aidable. He will receive normal hearing.

Prayers are answered.
Fasting works.
Miracles happen.
My gratitude is insufficient thanks to a Heavenly Father that is aware of my family.

Wish Him Luck!

(No, Collin is not having a seizure in this video.)

We're off to Iowa City today, I'll update all the doctor stuff when I get back!

Another First Day

Collin started his second year as a preschooler today. He was so excited to go that he was in my bedroom at 6:30 this morning telling me just how excited he was.
We were in a rush this morning and I forgot to take a picture of him before school. So I promised that we would take one when he got home. We ended up taking quite a few.
I'm sharing the many faces and personalities of Collin with you.
He came home proclaiming that he had met his best friend ever, but couldn't remember his name.

It's nice to have him busy doing his own thing in the mornings, but I'll miss the time we had before he started. Like just last week he went outside and showed me what it was like to chase the wind. What?? So I went out on the porch, and there he was running through the grass as fast as he could yelling, "see mom, I'm chasing the wind!", and then afterwards coming up to me and panting, "I won against the wind." Okay...

And for the first time in a long time I had a morning alone. Well almost alone. I did have to do a little entertaining...but he wears out much quicker than his older brother. So I did end up with some much needed quiet time.

I needed to contemplate a few things, mainly my new callings I received in church yesterday. More on those later.

After Collin's morning away and first day picture frenzy, he nabbed the camera from me and did a little photography of his own. Here's his work.

I'm not sure what he did here, but it's pretty cool, I might ask him to show me how to work my camera like that.

This wasn't distracting at all to a child that already hates eating!

He even managed to take some video, which I don't even know how to do on my camera.
So enjoy!


Caleb Update: This week is a busy doctor week, I'll start at the beginning.
Monday-Audiology appointment. We put him in the sound booth this afternoon to test him. The testing was a little dissapointing. I held him in my lap and as each sound and noise got louder he showed no response, even with the bone conductor hearing aide on. I'm trying not to get too disappointed, we don't have all the answers and children at this age often times don't respond consistently to sound.
Tuesday-Home nurse Tanda comes. She's awesome, she comes every week, sometimes three times a week to our home to check up on Caleb. Then we have Early Intervention working with Caleb and Staci comes over to the house once a month to work with Caleb and teach him things and mainly to teach me things, like how to interact and play with him.
Wednesday-I leave at noon to Iowa City. I meet with the geneticist that afternoon and we go through the genetic testing and get that process started.
Thursday-We have the Baehr first thing in the morning, which is a neurological hearing test. They will put Caleb to sleep and test his brain responses to sound. Diana (Caleb's audiologist) tells me that we will have some more answers after this test and hopefully a clearer picture as to what Caleb's future will be. We're also hoping to meet with Dr. Davis that day who is the pediatric heart surgeon that will be repairing Caleb's heart. If he's not in the OR that afternoon we'll sit down with him and discuss the surgery and all those details.
Friday-A trip to our in-town cardiologist Dr. Mooradian.

I know you're all jealous at the fun Caleb and I will be having this week, we'll keep you updated as to how it all goes!

After family prayer this evening I looked up to Caleb's sweet face and felt immense gratitude for the joy he brings into my life. Since he's been born I've heard many apologies, condolences and offered prayers for my little boy, and my heart bursts with gratitude for all those who are concerned and care. But when I think of every future and existing problem for Caleb, the pesty nose tube, the impending surgery and recovery, the hearing loss, the learning difficulties and the language barriers, and probably many other things I have not yet thought of, I am still filled with complete gratitude and humility that he's mine, and I would not change one hair on his head.

I almost cut off my head in this picture because I'm such a wreck, but Caleb is so cute it had to be posted.

This evening I was restless, I needed to be outside, the walls of my home felt as though they were closing in. So we went for a walk (that is why I'm so darn red in the face). This is how Caleb traveled. It's the good life for him.

And I meant to post this picture over a month ago when Cyndee was making her departure, but I forgot. That woman is so darn sneaky, she really thought she could somehow manage to go back to Arizona with Caleb. He tried to make his escape, but it just never worked out for the two of them. So this is for you Cyn. Your baby misses you!

Labor Day

We took the day literally this morning.

When I went out to work on the yard I found our wandering two year old neighbor boy in the back yard. He was wearing one jeweled sandal on one foot and a bright pink croc on the other.

I took a picture for proof.

This was my big raking accomplishment. I was dripping in sweat by the time the yard was in neat little leaf piles. I thought I had helped Tom out so much by raking the leaves for him.

Then he came with the lawn mower to the backyard and I realized that he was mowing them up instead of picking them up.

He assured me over and over that the raking really did help and make it easier for him, despite the fact he had never planned to rake, but to just mow them all. Nice.

And I worked really hard.

Want proof?

My new nasty blister.

After my yard work I decided it was time to cut the boys hair. It's been growing out all summer and was becoming completely unmanageable. I made the decision on Friday when I picked Talin up from school. It was humid outside and he was walking towards me and his hair was sticking straight up. It was as if he took his hands through it and because he was all sweaty it just stayed in an upright position. I knew it had to be cut. And he was very obliging to the suggestion.
Here are the before pictures.

And here are the after.

And I couldn't help but put this in. Caleb and his dinner.

Big Boys Don't Cry...

...they go to school.

First grade is not the same as kindergarten.

My pep talk?

Remember who you are.

Remember that you have a Heavenly Father that loves you and a mom and dad that are here for you.

You'll make new friends.

The first day always sucks.

I'm not sure if my children are just miniature, I mean I'm certainly not a "petite" girl, but Talin looks the same size as the kindergartners and the 1st graders all look like giants. I hope the boy can hold his own.
His nerves were getting the best of him. His new teacher looks like she's eighteen. None of his friends are in his new class. We're hoping for a miracle.
First day went okay, but he claims he was bored and has no friends. First day always sucks.
Today is the second day. It WILL get better.

Caleb in his cute church outfit that Aunt Amy gave him. The outfit fits in length, he's just still a little slim. I've never seen a baby with so little chub as this one.
My solution to cute little pants that won't hold up?
Wrap a belt around him twice.
It totally worked.
And it was totally ridiculous.
I'm not sure what I'll do when Caleb's constant entertainment goes to preschool in two weeks.
Met his teacher today. He will be the big man on campus. The oldest, and most likely the biggest in his class. Total opposite of what Talin is dealing with. Everything is opposite with those two.

What he lacks in brawn, he'll make up for in brains.
I think 1st grade is going to be wonderful for his little mind. He's constantly reading, creating and coming up with great ideas. He's going to do fabulous.

Now if only this little bit would drink a bottle on his own...

Good news:
Weight - 11 pounds 12 ounces

New surgery date - Nov. 25th

Yeah I know, he looks like the kid that gets beat up on the play ground everyday. It's a sad new device, and I'm starting to wonder where my baby is, with all the tape, tubing and now lovely khaki headband.

Here's the deal:

The ENT specialist out in Iowa City thinks that he has a working cochlea, and that his hearing loss is due to the structure of his ears, or I should say lack of structure. That because his ear is closed, not formed all the way and there is no ear canal, that he might have a working cochlea in there.

Solution:

A bone conductor hearing aide. It sits on the bone behind his ear and vibrates the sound through the bone, into his cochlea. Now if his cochlea is not damaged (fingers crossed), this would give him normal hearing, the way you and I hear, not the way a deaf person hears. If he were dealing with a damaged cochlea (deaf), then the hearing aide would only be able to magnify distorted sound for him. Kind of like Charlie Brown's teacher. Wa...wa...wa...wa...

So we go back to Iowa City on Sept. 10 & 11th.

The 10th:

Genetic testing

The 11th:

Neurological hearing test to see where the damage lies inside his ear.

Now if the bone conductor hearing aide is what he ends up with, don't worry, he'll only need to wear the head band for the first five years of his life. Then when his skull is thick enough, we'll drill it into his head behind his ear.

So there's the update!

Reality Check

Collin & Caleb
She's Gone! My sanity was dropped of at the airport yesterday at 6:30 in the morning.
Oh my goodness how I miss her!
It was so nice to have Cyndee around for a month. I'm just now realizing how much help she really was. For some reason the dishes keep piling up, the dishwasher has not been unloaded and no one has made the kids pancakes in two days.
We all REALLY miss her!

This is what we did her second to last day here. Stayed up till midnight on Saturday making this glorious five layered chocolate cake.
Caleb helped and shared in the bounty of chocolate.

And I shaved every blasted chocolate curl.

Update

So Caleb is doing better...a little. We went to the doctor and he was put on amoxicillan. It's so difficult, because we have no idea if it might be an ear infection or not because we can't see his eardrums, and we have no idea how his ears are formed on the inside and whether or not he has proper drainage. So...we're playing the guessing game and putting him on some drugs.


He also cut his first tooth this month, which could also be causing all the symptoms of congestion, vomiting, fever and cough. I'm sure we'll get to the bottom of it eventually.

And better late than never, here are a few Fourth of July pics, a month late.

We did sparklers on the back porch, went to a ward barbecue and watched a really cool fireworks show late that night. The boys loved it.

On another note, Caleb is quite fascinated with being fed through his tube. He loves to sit and watch the milk go down, a little disturbing.

So this is my new discovery, or should I say, my copycat discovery.

I saw my cousin Diana's little boy in one on her blog and had to get it.

It's a bumbo and makes it really easy to sit Caleb up in it. He loves it and has a great view of the world.

This is not an unusual sight. Caleb on the table with his bumbo watching his brothers refuse to eat. It was peannuty noodles, my favorite, the recipe is found on Amy's food blog, so good!

This is what happens when we're in a rush. We sit the babies in front of the TV and let Collin and Talin take turns holding the tube to feed Caleb.

Comical.

And I decided to chop off my hair, kind of. It's not as short as what I originally planned on, but I still like it, I can just barely put it back into a freaky tiny ponytail, so that works.