Happy (Early) Birthday Justin!

Justin's 26th Birthday is actually tomorrow, but we celebrated it today since he had the day off. Even though I told him he could pick anything to do - beach, fisherman's wharf, santa cruz, etc. He insisted that all he wanted to do was "hang out with his girls...and maybe go to a nice dinner." Sigh. He's so easy. I love this man!

So, we just hung out with our happy girl and even had the opportunity to take her out again. Nurse Sylvia and RT's Maggie and Tony helped set us up for our little outing.

wagon ride!

Our happy little family sitting outside and getting fresh air

After we took Moriah in, we scrubbed her down, put her in her jammies, and she was out. Then Mommy and Daddy enjoyed a nice dinner at...you guessed it, Cheesecake Factory! =)
Here is Justin looking extremely awkward when the waiters were singing him Happy Birthday. Happy Birthday Handsome! =)

Over dinner, Justin and I marveled at how well Moriah is doing. We are just enjoying every moment with her...not taking anything for granted. She's getting stronger by the day.

Here are a couple pictures just to show you how much fun we have been having with her!

Standing during therapy

Moriah's favorite thing in the world, besides Moose A. Moose, is Daddy's hat

She usually likes to take it on and off Justin's head over and over again, but we thought we would just let her wear it. Surprisingly, she kept it on.



Still waiting patiently to transfer. We do not have a date. Regardless, Justin is going to go back to LA next week to get the ball rolling with work. Hopefully Moriah and I are there soon after.

Much love,
Victoria

Weekend Review

There is nothing I can say to justify the way Justin looks

except to show you the smile on Moriah's face whenever he does this =)

Miss Thing has been teething this past week, and if you cannot tell in this picture, she is trying to eat me. Everyone who knows her, knows better than to let her grab hold of their fingers. This girl knows how to bite hard! Ouch!

We also had the chance to meet Valerie and her son, Zak. Valerie happened to come across our blog and had been following Moriah's story. Her son, Zak, had surgery this past weekend to repair his trachea, and so we took this opportunity to meet. They are such a sweet family, and I was blessed by this opportunity to meet another great family and add another beautiful babe to my prayer list. Actually, Zak isn't a baby anymore, he is 2 1/2, and is such a sweetheart!

Lastly, we had Nurse Christina taking care of Moriah. If you look closely at Christina's badge, you will see a red rose. This is because Christina received the Rose Award, which is an award given to Nurses for their outstanding work, because of her hard work and devotion to taking care of Moriah. More specifically, there was an instance during a care conference when Christina did a great job advocating for Moriah, and really touched Justin and I because she stood up for our daughter. There is no better person to recieve this award in our opinion. Good job Christina!


Still waiting to hear from LA. Justin's Birthday is on Thursday. Hopefully, we will all be home by then. Please continue to pray for a smooth transition, safe travels, and for Moriah to be healthy, strong, and thriving. Thank you guys so much.
Love,
Victoria

Advice from Mommy

Just remember, a girl can never go anywhere without her

feeding pump

IV fluid

trach vent

rectal tube

pulse ox

heart monitor

blood pressure cuff

And most importantly, without her hair done and a smile on her face

You do it all so well, sweet girl

p.s. still waiting on a bed in picu at chla

Just got word that Huntington Hospital won't take Moriah. I love feeling that my daughter is too much for our local hospital to handle. Aaargh. Can you tell I'm kind of getting grumpy here?
Good thing is that m's broviac is repaired.
Now we are just waiting to hear when chla picu has a bed. From my understanding, this could be within the next day - weeks.

I Don't Know What Is Going On Anymore

Mine and Moriah's t-shirts this morning. You can imagine the fright I had when I picked Moriah up from her exersaucer, heard a "snap" and saw blood gushing from her. I yelled for her Primary Nurse, Emily, and she and Nurse Christy, Nurse Jackie, and Nurse Amy all came running into the room when I said she was bleeding. Meanwhile, Moriah was happy as a clam and didn't feel a thing while I was shaking and crying, not knowing what happened. Turns out, I snapped her broviac (a permanent IV) in half. Great.

They are getting someone to see if it can be repaired. If not, a new one has to be placed because they cannot transfer without reliable access. I don't know if we're ever going to go home. Still haven't heard from either CHLA or Huntington either.

Please continue to pray for everything to be worked out. We know it will, but maybe for a little bit of a smoother transition. =)

Thanks.

Love,

Victoria

Transfer will not happen tomorrow, Wednesday.
Let's hope that it will go through for Thursday, and that Huntington Hospital will be able to take Moriah.
Otherwise, we will have to wait until the following week because they wont transfer from Friday-Sunday.
Thank you all for your prayers.

Hold Up

Okay, so transfer might not happen tomorrow. The PICU at CHLA is completely full. BUT, we might transfer her to Huntington Memorial's PICU, which would actually be much more convenient for us because it is so close to our home.
Dr. Shin is calling their Attending to see if they can accomodate Moriah with all of her needs. If they can, then Huntington, here we come!
Let's see where God puts us...

Will keep you updated.
Love, Victoria

GREAT Care Conference

Top L to R: Social Worker Heidi, RT Vicki, Dr. Shin
Bottom L to R: Jana, Case Manager Lupe, Dr. Weinberg

So, we had our Care Conference today, and we are so excited...

We are going home on WEDNESDAY! (well, at least it is planned for Wednesday)

I came with a list of at least twenty questions, and before I could even ask them, Dr. Shin answered all of them...Justin always says the man is a walking encyclopedia. He's a genius. =)

As far as Moriah's heart goes, she has high Right Ventricular pressures. No one is happy to see this, but they believe that over time, with continued pulmonary rehab and growth and nutrition, the pressures will come down. There is nothing you can really do about this. We are administering medication (sildenafil) with the hope that this will help. Only time will tell, and we will monitor it with a heart cath in 6-12 months. However, Dr. Shin seemed positive and hopeful about Moriah's heart, given all that she has endured in the past eight months.

Dr. Weinberg, Moriah's immunological Dr., was also at this meeting, and had some great news...
he doesn't think Moriah has my t-cells! They re-tested our blood, and according to this new test, he didn't think that she had them. This was such a relief.
However, he still believes that she does have an immune deficiency even though they can't define it, and that she will require prophylaxis antibiotics (bactrum and fluconizol -sp?) for at least the next year. Also, they will continue to do the Digeorge mutation test to see if she does, in fact, have it.

These were the two biggest topics.

We also have been dealing with Moriah's gut/motility issues. So far, we have been using rectal tubes to decompress Moriah's tummy when it gets extremely distended. We hope that once we come off her narcotics completely that her gut will start moving. In the meantime, we just might have to have a rectal tube at home because I wont let her take Reglan which is the only medication available for motility. When she was on Reglan in the past, it made her have these awful tics that they thought were seizures. The only other motility medication is the antibiotic, erythromycin, but she is allergic to it.
It is just a difficult balance because weaning the narcotics is going to take a while. She is very sensitive to the weaning process, and she is on some pretty hefty doses of ativan and methadone.
Oh, and one more thing, Moriah might be a little too chunky (24 lbs)...they are talking about decreasing her feeds because of how chubby she is. I keep saying it is water weight, but it's okay. I don't have to agree with them on everything. =)

With all that to say, we feel really good and ready to go home.
I'll be honest, and say that we have some anxiety about going back to chla since the last time we were there, Moriah went into severe septic shock. This was the most tramautic experience of our lives, and we definitely have a little post traumatic stress going back to the place where it happened. But, we plan on setting up a Care Conference with her team there, and hope to build a solid, working relationship with them in order to care for Moriah.

Please pray that
-Moriah continues to do well and stay infection-free
-We would have safe travels
-Justin's job transfer would go smoothly
-We wouldn't have anxiety about going back to chla, and that we would trust that God has it all under control
-The right Nurses and Doctors would be provided to take care of Moriah

Thank you all so, so much.
Much love,
Justin and Victoria

Our Sunday

On Sunday, we couldn't wait to have Moriah wear a t-shirt that we recieved in the mail from our church, Oasis. All the kids in the Children's Ministry put their handprints on the shirt, and said they were praying for Moriah. We are so blessed to have this body of support, and are thankful for all the prayers. We love you Oasis Kids!



Then Vince, Hannah, and Vivian came for a quick visit to say good-bye to us and send us off with delicious treats. So thankful for sweet, loving friends like them...


And then Justin and I spent an hour assembling a million pieces to create this exersaucer that the CVICU bought for Moriah for her Birthday (this will come in handy for the Chunk). We are only now getting to it after 5 months of it sitting in a box. Oops. Anyway, it was well worth it because Moriah loved it. Thank you CVICU!

July 4 2009

Well, since I can't climb into the bed with Moriah, I'll bring Moriah into the bed that I made on the floor. This has been long-awaited, right Amber? ;-)
*my own little taste of independence with my daughter today*




Happy 4th of July everyone!

*Hoping to take Moriah up to the roof so that we can watch the fireworks and celebrate our nation's day of independence!*

*AND WE DID GET TO GO*
Nurse Jodi made a special trip to take Miss Moriah up to the roof
(she's such an incredible Nurse)

Nurse Jodi, Justin, Sal, Dr. Shin, and RT Augusta seeing Moriah off

Moriah trying to see everyone and everything

Many of the patients, their families, and their Nurses were already gathered to watch the show


Move outta the way! This girl comes with accessories

With Sariah and Amanda, who are also at the RM House

And even though Moriah didn't even notice the fireworks (they were pretty far away), we still really enjoyed this time as a family. Happy 4th of July. =)

Please pray for us. The plan is to go home this coming week. We have a care conference on Monday, to tie up any loose ends (discuss status of heart, immune system/t-cells, motility/gut issues, etc), and then they will coordinate Moriah's medical flight and arrange a bed in the PICU at CHLA. We will have to be at chla for several weeks while we undergo trach training and have the house set up for the home ventilator system.
We pray that Moriah continues to do well, and that we will not have any more issues with infection.
Thank you.
Love,
Justin and Victoria

Milestones and Memories

All right. Today was definitely one of the greatest days that we've had at the hospital...
Moriah sat up by herself without needing us to hold onto her!!! Even though it only lasted several minutes and she eventually fell over to the side, this was a BIG DEAL to us! Of course, I didn't have my camera at the time, but this was a picture taken right after, and Justin and I were overjoyed with the progress that Moriah has made from all of her therapies. After being sick and in bed for so long, Moriah's physical strength is extremely delayed, and she was only able to hold her head up on her own. But today we reached a new milestone, and she was able to sit by herself! All right!
(sorry, I know this may seem a little dramatic and some might not understand, but when you've worked so hard to get to a certain point, it sure does feel good when you get there! you go girl!)

(helping her sit up at this point; she was exhausted after we made her show off her new skill for every Nurse and Doctor in the CVICU, including Dr. Hanley =) )

And because Miss M has been doing so well, we went on our first wagon ride since November! This was also the first trip taken with the trach. Moriah had her trusty pal, Christine, accompany her. She doesn't go anywhere without her.

All her loving Nurses and Doctors came out to see her

Everyone rallying behind her. Go Moriah Go!

Covering her face with her hat as soon as she went into the sunlight

Examining a leaf

Daddy trying to stop her from eating it

Surrounded by proud parents and grandparents


Such a great day.
Home, here we come!

??

It's been hard to post lately. Not much has been happening, which really shows how 'no news is good news' in our world. I don't want to jinx it, but Moriah has been doing pretty well lately. No infection. Yes! So far, the prophylactic antibiotics are working. The only thing is that her liver and stomach have been really distended again, despite our efforts with miralax and a rectal tube (tube inserted into her bottom to make all the poop come out - just in case you were wondering). So we aren't sure of what is the cause for this intermittent 'big belly' that Moriah gets, and we're hoping it's nothing too worrisome. Otherwise, we have been doing a lot of therapy with the Chunk (yep, my new nickname for her), and just trying to stay really active throughout the day.

My parents, Maji and Nano, drove up yesterday to see Moriah...they really only came to see her. I think I got a quick kiss before they pushed past me to see their granddaughter ;-)


The 3 generations of girls...haha. I just noticed how we each have different shades of olive skin.It's the Punjabi side.


Dr. Zebrak is on this week. Yay! Love her! Dr. Zebrak bought Moriah this Adorable book that her sons used to have. She's so thoughtful. She got this for her long-timers, Moriah and her other patient, Callie Stapp (who, by the way had a successful surgery and is in the step-down unit, but is now battling a fungal infection, and is not getting better. They are having a hard time pin- pointing what is going on even though mom, Karen, knows something is very wrong. Talking to Karen today brought back a surge of memories of what it's like when you know something is very wrong with your child but no one validates what you are saying. Advocacy, advocacy, advocacy! It's what it comes down to, and it is sooooo tiring. The best Doctors and Nurses are the ones who listen to the parents and act on it! Thank goodness that Dr. Zebrak was here, and knows Callie well. Please keep the Stapps in your prayers, and that Callie would soon get better).


And Justin and I just watched Gran Torino. Good movie. Heavy. But Justin is exhausted and wants to sleep, and I'm still wide awake, poking at my husband here and there to try and get him to stay up with me. No dice.

Now, I have to figure something else out since I'm done with this post.
Hmm...what to do, what to do.
Hope you all are doing well. Would love to hear from you. Still feel like we're on an island at times...L'isle de l'Hopitale...
Will try to update soon.
Love,
Victoria

Our Pain is NOT Being Wasted

The number of people who have come to know God or have grown closer to Him because of our situation with Moriah has made this all worth it.
Even though this is a video of Justin explaining the meaning of baptism as he is baptizing our friends who recently accepted Christ into their lives, Gwen and Steve, it is such an encouragement to us to know that "our pain is not being wasted" (Chris Manus tells us this) and that God is using this situation for His glory. Even though we dont always understand it all the time, we trust in His sovereignty, and know He is working.

*Just pause music at the bottom of page to listen*

The Baptism from CFP on Vimeo

or watch on YouTube
Crunchy Fingers Production

Lunch with the Girls

Today, I went to lunch with my dear friends, Hannah and Vivian. You all know them by now ;-)
This was a belated Birthday lunch for Hannah. We ate the most delicious toasted almond chicken salads at Joanie's Cafe (I find every reason in the world to come here and eat this salad) and watched Vivian chow down on her black beans and bread. Vivian was such a big girl and even joined our conversations, mentioning "la la" here and there. It was so enjoyable to have lunch with the girls...a treat that I haven't enjoyed in ages, and I appreciated every minute of it. Thank you sweet Hannah and Viv for a wonderful afternoon.


And since Moriah moved to a different room that is more accessible, I was able to "sneak" Vivian in to see her other half!!! This topped off my day to have the girls see each other once again (the last time was end of January). Look at these cutie patooties!

I just have to say that Moriah is turning into quite the Mama's girl, which I'm loving. I'm definitely going to remember this because I don't know how long it's going to last. Thanks for capturing this moment, Hannah.


And lastly, a Happy Birthday to Teta Jenna! We love you!

Highlights of the Past Week

Father's Day Breakfast at the RM House

Moriah loving her Daddy on Father's Day

And then giving him her Father's Day present...Mommy and the Nurses laughed a lot at this one.
Yes, that's poop.

Our good friend, Steve, visited us from Colorado! Steve has one of the biggest hearts out of anyone we know, and has always loved and served us selflessly. It was so good to see our friend, and catch up on life.

Jana and the team came up with a new plan for Moriah; antibiotics were stopped today, and they are starting her on Bactrum and Fluconisol (sp?) prophylactically, and will give her the next 10-14 days to see how she does on it

Preschool with Miss Kristen. Moriah made a Father's Day card with her footprints. So cute!

Exercising in the Bumbo

Reading time with Daddy. Moriah looooves reading books. Her favorite ones are by Karen Katz because she likes to flip up the flaps and find the picture behind them.

We were barely able to fit her in her CU t-shirt which is 24 months by the way. The tee kept rolling up throughout the day so that her belly would hang out. Can we say Chunky Monkey?

We went to Nicholas' 1st Birthday at the park. Ashley (mom) and Nicholas were at the RM House with us because Nicholas had a liver transplant. He was so loved at the House and we all just passed him around and loved on this sweet, cuddly little boy. Ashley and Nicholas went home today. Happy Birthday handsome!

Mommy holding her big girl, enjoying her laughing and smiling

Video
*Just pause the music at the bottom of the page*

Make video montages at www.OneTrueMedia.com

Physical Therapy: working really hard during tummy time

Fine Motor Exercises...she's getting better with that left arm

And Daddy learning how to do weight-bearing exercises to help Moriah stand...looks like Justin is doing most of the work...she has him wrapped around her finger ;-)

Phew! Lots went on. We are glad that Moriah got better during the week, and we are now really hopeful with this new strategy of prophylaxis medication. We will update on how it goes. Otherwise, I'm just really enjoying my girl.

As soon as I get to the hospital, I don't let go of her, and Justin usually has to fight with me in order for me to let him have his turn. The Mama Bear in me comes out if I don't get my hugs in ;-)

We just ask for continued prayer for strength, perseverance, hope, and healing.

Thank you, friends.

Love,

Victoria

Happy Father's Day!

Happy Father's Day Nano, Papa, Gramps, Papa Wert, Nanaji, and Dave!
We love you all, and thank you for being there for us!
Love,
Justin, Victoria, and Moriah

Nano

Papa

Gramps

Papa Wert

And Riggs, we thank you for being like a Dad to us over the years, having loved us and served us selflessly. We love you.

And to Justin

Happy Father's Day. You are the Best Daddy to Moriah. We love you.

A Little Better

Papa (Justin's Dad) came to visit us yesterday, and loved on all of us. Moriah got extra hugs (as you can see she wasn't feeling 100 percent at that point), and Justin and I got extra nice meals
;-)



Today M was feeling better and I got smiles and kicks when she saw me. Every morning when I come to see her, I hold her for hours in this chair. This morning she was getting a slight fever so I dunked a couple washcloths in ice water and put them over her. She liked eating them.

I know I haven't been writing much lately. We've just been going through the motions. This has become our life. Up down up down. I feel like I am just repeating myself over and over again.

But thanks for all of you who are there for us,and continue this tiring journey with us. We appreciate all the support and prayers.

Love,

Victoria

Prayer Please

Please keep our new friends in your prayers.
Eric and Dana recently had twins, a baby boy, Landon, and a baby girl, Kapri. They found that Kapri had a heart defect, and so the family came up to LPCH from Orange County soon after the twins were born. Moriah and Kapri were neighbors.
Earlier today, Eric and Dana had to let their precious baby girl go because there was nothing more that could be done for her heart.
This is the hardest thing that any parent could go through.



We ask for you all to keep them in your prayers as they cope with the loss of their baby girl.
They also have a foundation called Band of Brothers Foundation if you want to take a look. This is such a sweet, wonderful family. We stand with them in love and prayer.

Update

M is doing a little better as she finally woke up for more than twenty minutes today.

They were able to see that she did grow bacteria in her respiratory culture, and so we are glad that we actually have a reason for this infection.
We are just waiting to see which antibiotics will work best this time around.

She is also working very hard to breathe because of the infection. She is breathing around 60 breaths per minute, poor baby.

The team is now thinking that they will have her take Bactrum (a broad spectrum antibiotic) everday in order to prevent more infections. This is what they do with people who have certain diseases or immune deficiencies.

Still no word on the result of the hla test to see if moriah really does have my t-cells.

Needless to say, plans to go home are put on hold once again.
Justin and I are hanging in there. We just want Moriah better.

Streams in the Desert

As I sit here this morning, watching my baby girl battle another infection , I came across several passages in this devotional, Streams in the Desert by LB Cowman, that our friends, the Chez's, and Ashley Kostjuk's sister in law, Bria, gave us (you can always use several copies of a good book)
Anyway, I wanted to share these passages that spoke to my heart this morning. Maybe they will speak to yours if you are going through a difficult season in your life...

From the passage on May 10 pg 188
"I would have despaired unless I had believed that I would see the goodness of the Lord...Wait for the Lord; be strong, and let your heart take courage. (Psalm 27:13-14 NASB)

Do not despair!

Oh, how great the temptation is to despair at times! Our soul becomes depressed and disheartened, and our faith staggers under the severe trials and testing that come into our lives, especially during times of bereavement and suffering. We may come to the place where we say, "I cannot bear this any longer. I am close to despair under these circumstances God has allowed. He tells me not to despair, but what am I supposed to do when I am at this point"
What have you done in the past when you felt weak physically? You could not do anything. You ceased from doing. In your weakness, you leaned on the shoulder of a strong loved one. You leaned completely on someone else and rested, becoming still, and trusting in another's strength.
It is the same when you are tempted to despair under spiritual afflictions. Once you have come close to the point of despair, God's message is not, "Be strong and courageous" (Josh 1:6), for He knows that your strength and courage have run away. Instead He says sweetly, "Be still, and know that I am God." (Ps 46:10).
Hudson Taylor was so weak and feeble in the last few months of his life that he told a friend, "I am so weak I cannot write. I cannot read my Bible. I cannot even pray. All I can do is lie still in the arms of God as a little child, trusting Him." This wonderful man of God, who had great spiritual power, came to the point of physical suffering and weakness where all he could do was lie still and trust.
That is all God asks of you as His dear child. When you become weak through the fierce fires of affliction, do not try to "be strong." Just "be still, and know that (He is) God." And know that He will sustain you and bring you through the fire."

This is part of June 13 th's passage pg231-232
"My peace I give you. (John 14:27)

...Outwardly, Christ endured one of the most troubled lives ever lived. Storms and turmoil, turmoil and storms - wave after wave broke over Him until His worn body was laid in the tomb. Yet His inner life was as smooth as a sea of glass, and a great calm was always there.
Anyone could have gone to Him at any time and found rest. Even as the human bloodhounds were dogging Him in the streets of Jerusalem, He turned to His disciples, offering them a final legacy: "My peace."
Rest is not some holy feeling that comes upon us in church. It is a state of calm rising from a heart deeply and firmly established in God."

Henry Drummond
My peace I give in times of deepest grief,
Imparting calm and trust and My relief.

My peace I give when prayer seems lost, unheard;
Know that My promises are ever in My word.

My peace I give when you are left alone -
The nightingale at night has sweetest tone.

My peace I give in times of utter loss,
The way of glory leads right to the cross.

My peace I give when enemies will blame,
Your fellowship is sweet through cruel shame.

My peace I give in agony and sweat.
For My own brow with bloody drops was wet.

My peace I give when nearest friend betrays -
Peace that is merged in love, and for them prays.

My peace I give when there's but death for thee -
The gateway is the cross to get to Me.

I hope this could be used to speak to you.
Will continue to update on Moriah's progress.
Have a blessed day.
Love,
Victoria

Didn't Pass the Test

Hey everybody...so we just wanted to make a quick post to let you know that Moriah spiked a fever today, and they started her on antibiotics. She wasn't feeling too hot tonight, so we ask for continued prayer. Will keep you updated. Much Love, j + v

Albert'a' Einstein

That's right. She's a genius. =)

Sitting Pretty

Moriah has until Tuesday to prove to us that she's healthy. So far so good.
In the meantime, we've just been hanging out.
Tick tock tick tock tick tock...








Mommy, can we go home now?

A Day with Friends

Yesterday, our dear friends, Todd and Ashley Kostjuk, stopped by with their children, Gavin and Lexi, to visit Moriah and I at the hospital. Moriah and their sweet daughter Reese were NICU friends at chla. Reesie is now in Heaven with the Lord after being used greatly to touch the lives of so many while she was here. We love this family, and have been blessed to walk with them on this journey.

Moriah couldn't get enough of Ashley or Todd! She kept wanting to look at them and touch them. She knows who her friends are when she sees them =)

It was so great being with you all again. We love you guys.


Right after the Kostjuks left, I sat with our friends from the RM House - Minnie, Wayne, and their kids, J-boy and Nikki. This sweet family came all the way from Hawaii because their baby was diagnosed with hypoplastic left heart while in utero. Aubrie Lynn, who is now 6 days old, just had her first heart surgery yesterday by Dr. Reddy. I was able to be a part of the incredible moment when Dr. Reddy came out to tell them surgery went well. We were all left with tears of joy, and I just watched Minnie and Wayne hug afterwards, knowing that feeling of relief and gratitude that a husband and wife shares after a successful surgery...
Please keep this family in your prayers as they begin this new chapter in their lives of having a baby with a special heart


And to top of my day, I stopped in baby Connor's room to see how he was doing. We met Sariah and Andy 6 months ago at the RM House, when they first had baby Connor. After a successful first heart surgery by Dr. Hanley, the family was able to go back home to Seattle and love on their baby until they had to return recently for another surgery. Even though surgery went well, there might be a problem getting Connor extubated because of potential nerve damage. Remember when Moriah had to have a diaphragmatic plication surgery on Jan 2nd? This might be the case for Connor, but we will pray that everything heals quickly.


As for Miss Moriah, everything is going okay. They just finished her last dose of antibiotics yesterday, and will now monitor her for the next 7 days to see how she does off of antibiotics. They want to get her to where she is not having fevers anymore.
The "re-test" to see if M has my T-cells hasn't come back yet.
Justin and I are still wanting more of a handle on her immune system before we leave, and luckily, we have a team committed enough to doing this for us. We love the CVICU! =)
I will update as soon as we find out more.
Love,
Victoria

Great Blog

Found a new blog that I love. I was immediately drawn to this family because 1) Adrienne has a total heart for God 2) her precious son, Noah, was in the children's hospital in Denver for 7 months after he lost his battle to lyme's disease 3) I saw pics of their family at Pearl Street (in Boulder) and it brought back memories from when Justin and I would go there and 4) she has great taste in music - must be a colorado thing =)

Anyway, check it out. This family has touched my heart.

And to all my Colorado peeps, Adrienne actually has a radio talk show on Castle Rock Radio called
The Well

Check this wonderful family out
www.noahsteven.blogspot.com/
www.thewellradio.com/

Nelson Family Spa Day

Juut Salon came to the RM House today! Several of the stylists from this high-end salon donated their time and services to the families of the House. Justin and I took advantage of this opportunity to get free haircuts (long overdue for justin) and massages. It was absolutely wonderful, and we both got some of the best haircuts we've ever had! They were such a great group of people for coming to love on us the way they did. It was much appreciated by all of us at the Ronald McDonald House. Thank you Juut!

My stylist, Tara, and Justin's stylist, Louise


And after Mama and Daddy had their spa experience, Primary Nurse Debbie decided to create one for Miss Moriah tonight. She searched the unit and finally found something big enough to stick Moriah in so that she could enjoy her first bath in over 7 months!


...and she's more interested in the Laker game on tv...Nurse Tegan says she's an LA girl through and through =)

Here's to a day of pampering for the Nelson Fam

A Daddy and His Daughter

After a long, hard day at work, this Daddy couldn't get to the hospital fast enough to see his daughter. He stood there comforting her for hours as she was crying from teething. He would have stood there holding and kissing her the whole night if he had to...

My Afternoon

With insurance companies, medical groups, explanations of benefits, and credit card payments

*Sigh*