6 Months: Apples to Oranges

I have made it to 6 months (actually, I will hit the mark on Sunday, but we have a busy weekend coming up with some special friends coming into town to visit so I'm doing this post now).
My belly is getting bigger by the day. I can feel baby boy shakin' his groove thang every single day.

He's probably dancing to this Black Eyed Peas song because it has been my new favorite (although Justin might insist that his son is rocking out to his current fav by Temper Trap) =)

And big sissy can only cuddle with me at my side because of the basket ball that is in the way. Ha. Pregnant bellies are comical to me.

I have my 6 month appointment coming up this week. Sciatica has been bothering me on some days, and by nighttime I'll be limping along. Warm, hot showers have helped ease the pain a little bit. My weight gain has been pretty much on track even though on some days it feels like I weigh a lot more than I should. I'm not really concerned about it because I know I will eventually lose it like I did with Moriah. No, I won't be wearing my pre-preggo jeans soon after like some people can, but I will get there soon enough.

With Moriah, I did not read any baby books because I knew my experience was going to be very different, and that we were going to be in the hospital for a while. I didn't want to have any idea of what things "should" be like, and feel bad because that is not how it would happen with her...so I just stayed away from preparing-for-baby-type books altogether.

I think it's going to be a very different experience this time around, and I have been reading up on as much as I can. I feel like I won't know what to do with baby boy! Ask me how to start a feeding pump, vent the g-tube, or work an oxygen tank and I'll be fine. I don't know anything about breastfeeding, burping, or not having to deal with some type of cords being in the way. I know we will learn as we go along, but as far as baby experiences go, it will be like comparing apples to oranges...then again, I know that no child is alike, and I'm sure that's how it is for a lot of parents...

Tears, Tears, and More Tears

But these are tears of joy!

There are 3 components to our excitement:

1. Moriah did her first 24 hours off the vent last night, and did really well!! We had to pick our jaws up from the floor =)

It's looking like this happy girl might forego the vent altogether pretty soon... I mean we were once told that she might never come off the ventilator...amazing.


2. She is now using a passy muir valve during the day and so now we can hear her voice again. The other plus side with having the passy muir valve is that it is sort of acting like a "plug" for the trach, and forcing Moriah to breath through her upper airway (nose and mouth). This will essentially help make her stronger. Also, with the PMV, M is requiring about 75 % less oxygen than she is used to!

Everyone was gathered around to hear her talk for the first time, and celebrate the milestone of being able to use her voice

Make an on-line slide show at www.OneTrueMedia.com

3. While our friends, Pastor Chris and his lovely wife Cassie, were visiting us at CRC the other day, Moriah starts a backwards crawl on the floor. She fell over soon after, but still!

Cassie, who taught music class for preschoolers, said she will take over doing music therapy with Moriah when she comes home - woohoo! Of course I didn't get a picture of Moriah "crawling" that night because it all happened so fast =)


But here she is with CNA Janet practicing her new moves


The Nelson Family is totally doing their celebration dance right now.
And Cassie, can we play this song when we do music? =)

Love you guys!!

Stranger Danger Syndrome and Hearing Results

Yesterday, we took Moriah in for her ABR at LPCH. For some reason, Moriah was really scared when she saw the EMT and hospital staff and she clung to me for dear life. She just hid her face, and would peek out only if something interested her. Justin took this picture of her when I was trying to put her on the bed, but she still wouldn't let go. She finally peeked when she caught a glimpse of Moose A. Moose on the hospital tv. Sigh. I cant thank Moose A Moose enough for easing my child's anxiety.


Eventually, M got past her stranger danger syndrome and went in for her ABR.

For this exam, you have to be put under anesthesia, and the audiologist then measures the brain's response to sound. While we already knew about her complete hearing loss in her left ear, we expected that she would have severe loss in her right ear - just like the past ABR and two behavioral exams showed.
HOWEVER, the audiologist came back with news that was better than we expected - M only has a mild hearing loss in her right ear, and she is able to hear us if we are close up.

The audiologist said a hearing aid might help...or it might not. Well, we wont know until we try it, so we will pursue one - even though we know it is going to be a huge pain trying to get one covered by insurance. They said there is a chance we will have to pay for one out of pocket, and they are several thousand dollars. Luckily, we are only looking at one! Anyway, we'll cross that bridge when it comes.
For now, we are so happy with the wonderful news.
It's definitely another thing to celebrate, and I have the perfect song for it.

This song came from the music list that I call Justin's "favorites". It goes something like this...
"Oh, I found your favorite song"
Play song that is totally far from his favorite.
His response
"Cool, Vic"
This song is especially funny to us because it reminds us of someone we knew growing up who would get super into it and had some pretty interesting dance moves...let me just say there was fist-pumping involved. I can picture it now, and it totally puts a smile on my face =)

"One more time, we're gonna celebrate"...

Have You Had

YOUR KISS TODAY???





I couldn't decide between Beyonce's "Crazy in Love," Soulja Boy's "Kiss Me Thru the Phone" (Justin would have died if I did that one - not his kind of music ;-) ), and Kylie.
Here's to Kylie...

TGIF, people! Enjoy your weekend <3

Two Hands

Yep, she finally got up on two hands (haha of course the rail is covering her hands - this was the only picture i caught before she fell over)). This has been in the making for a while, but she finally did it. One year in the hospital equals one year making up for lost time. It's a long and slow process, but she's doing it, one hand at a time...

Watch out world, here she comes!

P.S. Check out that hair =)

Shake It Like A Polaroid Picture

This girl is just a silly, silly billy (Moriah, not me...although we do say she gets her goofiness from me). One of her things lately is to stick up her hand and shake it...then she shakes her head, and then there goes the rest of her body...just like she's in her own world dancing. I know this picture doesn't quite capture it due to my husband's excellent photography skills ;-), but just seeing this puts a smile on my face.

I couldn't think of a more perfect song for her other than this one.

Keep on shakin' it baby girl...

P.S. Just to update about M's medical status: they did find that she had a respiratory infection/bronchitis so they started her on antibiotics a couple days ago. She is feeling a hundred times better respiratory-wise. I am happy to report that this was only the third treatment of antibiotics she has received while being at CRC for the past 6 months...she used to be on a course of antibiotics almost every other week so this shows a lot of progress. Also, she is finally being started on cyproheptadine after she had a really bad abdominal migraine tonight =(. I guess it took for them to see it before they would start her on it. I just hope it works. I would rather try this medication, but I know if it doesn't work, we can always fall back on Neurontin.
Will continue to update. We are so, so thankful for all the support we have received here. We love you guys.

On the Move

Signing "hat" and doing a 30 minute trial off the ventilator

Learning to sit by herself and play like a big girl (there's nothing I can do to keep that hair tame for more than five minutes)

Rolling

and rolling

and she's gone! (here's where I drop the camera and catch her before all her tubes come out/off. this is what i spend the majority of my day doing - untangling, unhooking, untwisting, threading through, and hooking back

Moriah is officially a two-year-old now. She is on the move, and when she sees something she wants, she does whatever she can to get it. I've never seen such determination from anyone before. Seriously. She's also very clever and has learned to turn on the waterworks when she's with her Daddy to get what she wants...Justin says she has a whole year for him to be at her beck and call. Why do I think that this one year of being spoiled is going to turn into a lifetime? =)

And because of her new movin' and groovin' phase, I've added a new song to the "Just Dance...Even If You Can't Hear the Music" playlist. Enjoy!

Hear Me Out

Last week we took another little field trip to LPCH's satellite clinic down the street for ENT and Audiology.



Moriah and her RT,Jay, who held her through the evaluation. Jay was such a good sport and did whatever he could to calm her down. We love you Jay!


Here, the ENT cleaned out Moriah's ears, and confirmed that she doesn't have a left cochlear nerve, and that she cannot hear out of that side. Okay. Fine. We knew this already from CHLA. So what about the right side??

We proceeded to a behavioral evaluation where they stuck something in her right ear which made noises, and the Audiologist monitored her responses. This was a mess. The room was hot and stuffy, Moriah was crying, she was being bagged, we were trying to be careful with her wound and wound vac. We've had more succesful appointments than this =)

The results showed very severe-profound loss (like her ABR showed).
However, the Audiologist wasnt sure if it was because of the difficult circumstances or if the test was accurate. We have another appt. scheduled in 4 weeks, hoping that it goes better and that maybe the wound vac will be gone.

What I'm having trouble with:
I feel like I'm discouraged, and being advised to put her hearing issues to rest...that we should wait until she's off the ventilator or until she is discharged from CRC until we pursue a hearing aid for Moriah. These are both things that might not happen for a long time. The audiologist was honest with me, and told me that the only reason she is pursuing another test for Moriah is because Justin and I are advocating for it...otherwise, it involves a lot more trips to the outpatient clinic with trying to get fitted for a hearing aid, get a hearing mold, etc.

I asked if children can have hearing aids while they are on the ventilator, and I was told that it IS possible and that the amplification can be adjusted so that the noise from the ventilator doesn't bother her.

So my question is why do we have to wait until she's off the vent?

I know what an interactive, social baby Moriah is, and we would love to have her be introduced to sound if it is possible. Wouldn't this help with her development? I know the answer to that one! =)

In the meantime, we continue to expose her to signing, facial expressions, visual tracking exercises, etc.

Do you guys have any other suggestions?

Thanks for hearing me out on this =)

Love,
Victoria

And just because I haven't done one in a while...