Tuesday, June 29, 2010

For Daddy

First off, I just wanted to follow up from last week. Everything went really well at LPCH. The procedures went smoothly, and we were back at CRC that evening. Our experience with the outpatient staff and Doctors truly confirmed why we moved to be close to that hospital. In the past, we've only had experience with the CVICU staff, and so I didn't know what to expect going into a different unit. However, everyone we came across was extremely kind, warm, and loving, and made me feel like a vital part of the team. M was a champ, and was back to her normal self the very next day. Let me tell you, it is SO NICE not to have the broviac anymore. As for the MRI, they did find four gall stones altogether, but they were not dislodged or causing issues in her gall bladder. We have yet to hear from Moriah's GI Doctor about what they are going to do about them - if anything at all.

Since Justin is still away for work, I'm letting him in on what his girl has been up to lately. Things have been rather calm, which is nice, and I've had nothing but a happy girl on my hands. She hasn't had anymore issues with pain for a couple weeks now, since they maxed out her Neurontin, and she is still going strong with being off the vent for 6 hours total. There is talk now about moving her up to 4 hour sprints, twice a day. Soooooo great!

Here we are enjoying the nice outdoors with Maji. She is doing a little weight-bearing on her feet


It only lasts for seconds, but it's still better than nothing. At least we can be outside,
off the vent, doing these exercises


While happy, Moriah's also been "naughty" and has been pulling her socks off about twenty times each day. Why not just leave them off, you ask? Because she pulls her pulseox probe (wire that lights up her toe) and sets off the alarms...this is the joy of having all the accessories...I've even seen the beginning signs of her pulling at her trach... I am not looking forward to facing that battle...you can see now why I'm happy the broviac is gone!


Smiling...with a really stretched out sock on her foot


Sporting a new swimsuit on pool day.
She got mad at me for making her wear her sunglasses, and she kept trying to take them off


She won


And last but not least, we have music therapy with Jodi!!
I have to be honest and admit that I had my doubts about music therapy for M. She cried and cried through the first few sessions, and was scared of all the noise and vibrations she would feel. Whenever Jodi would walk by her with the guitar, Moriah would cry and throw her hands as far back as she could so that she wouldn't have to touch anything (Jodi taught us that children with hearing impairments feel the vibrations of the instruments even more).

Over the past few months, through Jodi's passion, skill, and dedication, M can't get close enough to her when she plays the guitar!
For example:



And today, Jodi took Moriah on her lap, and let her explore the guitar herself. She loved it!



It's amazing to witness the progress that she is making right before our eyes...and I even think she might be taking after her Daddy from his college days


You all know that she's got one thing down....that CRAZY HAIR =)

12 comments:

Anonymous said...

Moriah is so precious. We've been keeping you all in our prayers (a always) and thank you so much for the update from last week.

I love the new bathing suit, and she sure seems to enjoy the swimming pool time.

She must be missing her daddy a lot. I can only imagine her face when she sees him walk into her room soon.

Kimberly said...

Hi Victoria, I just found your blog from blogfrog. Your story is so inspiring. Moriah is such a beauty! I could not stop looking at her pictures and that smile on her face. I will keep her in my prayers and you and your husband too! What I couldn't get over is how sweet you all look as a family...and how much joy she is bringing to you despite the medical issues. You can see that joy all over your faces. She is precious!
Blessings, Kimberly

The Simmons Family said...

Great update!! I love that she is getting so many therapies while she's at the rehabilitation center. It's a blessing. I am so excited to see her bearing weight in her legs too, even if it's just a little.

I don't blame her for taking her socks off, wearing a pulse ox all day would make me crazy. Owen only wears his for 5 min here and there and can't wait to rip it off.

It sounds like she's doing great with the trials off the vent. That's so awesome!!!

Amber said...

How cute! SO relieved and grateful to read all of the WONDERFUL updates on Miss M. She's so beautiful and happy and God is so evident in your lives, Victoria. My heart is happy this morning.

Hugs & Prayers
AmberK

Colton's Journey said...

Its so exciting to watch her doing more and more with each post! I'm glad to hear the procedure went smooth and the staff was nice!

Carey said...

So happy to hear the broviac is gone and you were in and out of LPCH so smoothly! And I LOVE seeing how great Miss M is doing. Great news about the trach sprints. And, I love that she is enjoying music therapy now. What an amazing little girl you have!
Hugs! xoxo

letitia said...

praise God for a sweet staff for moriah :]

and what a cutie ... i'm glad she's enjoying the guitar/music sessions more!

PRAY4CALLIE said...

Moriah is so PRECIOUS:) So happy things are going so well with her vent, praying for those 4hr sprints!!! That would be AWESOME!! I think of you guys often and can't wait till I get to meet Miss Moriah:)

ZAC said...

She is SO SWEET Vic! It will be exciting to see where her talents lie. In those pictures it seems like she already knows how to play the guitar!

Hugo said...

Hi Victoria

What a good few days you guys have had!

I find it very apt that we are emailing about the sunnies and In this blog Moriah is desperate to get rid of them!!

She looks really happy and seems to be enjoying the extra freedom off the vent - such a little progress goes a long way.

Thinking of you all, love and hugs from me and Hugo.x

Ashley Kostjuk said...

I love all the pictures and she just makes me smile, but I have to say my favorites are the one's with Moriah and the guitar. Then to see a picture of her daddy too ~ that is beyond sweet. Our seasons of life are so quick, they're gone with a blink of an eye. Even on the hardest of days, know that these days too will pass. The Lord continues to be faithful to you, granting you the strength and peace for each day. You are so loved. I wish we could be there with you as you walk this journey with your baby girl. For now, your blog posts and pictures are the next best thing. I'll let you know when we'll be coming up north again. We will definitely need our Moriah fix! We love you guys!

Kristi said...

Oh my goodness! The pics of Moriah with the guitar remind me of Gracie (at that same age) and her music therapist. Love seeing M be super interested like that! I'm sure she loves the input the guitar gives her, too!

YAY for the broviac out! Woo Hoo!

Not yay for the gall bladder not being the culprit behind her pain... I was hoping that the answer could be that simple for M (and for you guys) and they'd fix it and that would be that. We are in the same boat with Gracie's cycles and pain, though there are additional issues with her. Wondering if anyone has talked with you about the nissen fundoplication and how it might be affecting Moriah? Also, wondering if during Moriah's pain cycles (or any other pain), she has a change or increase in her secretions?
All food for thought for you and me... as we both problem solve, trouble shoot and advocate on this same issue. SO GLAD to hear that the max Neurontin dose might be doing the trick for her or is at least providing a much needed reprieve.

Hugs to you all!

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