Friends in CHARGE

These two melt my heart. 

They have been friends since babies. 

Hannah and I would refer to them as Two Peas in a Pod. 

It is obvious that Moriah and Vivian adore one another. 

 After years, this was the first time that Moriah finally got to go over to Vivian's house to play with her. 

 And they did what they both love to do most...read books! 

 This day was a special occasion. Our other dear friends, the Dodds, came up to visit from Los Angeles. We have all leaned on one another for support and encouragement over the years...we have formed a sisterhood. 

 It doesn't hurt that one of our sisters, Catherine Dodd, is one of the top photographers in Southern California...and she came just in time to do our Christmas photos =)

 Sweet Reuben should have been sitting in the middle of these two ladies

 But, lucky for him, his brother, Callum saved him =)

 And just a couple for the books. Simply because we don't know when the next time would be before we all get together again. 

 It was so nice knowing they all share in our sheer and utter chaos that we call life. 

I love you ladies, and I'm honored to know your children.

Thank you for your friendship over the years. 

Go Shawty

Whenever I hear anything about Moriah being on the short side, I hear that 50 Cent song in my head...it only goes as far as the "Go, go, go Shawty, it's your Birthday, we're gonna party like it's your Birthday" part. Sorry 50, but that's where it ends for me. There will be no sipping of Bacardi or swearing up a storm in the same sentence as my 3 year old thankyouverymuch.

When we were out on a walk with Moriah the other day, a family asked us if she was 1 or 2 years old. That should give you an idea about how small she is. I smiled and told them she was 3, but said she was definitely on the petite side - like her Mommy. She's still wearing 2T pants, although her tops can be 3T if they are short sleeves - forget it if they're long sleeves. I want to take a pair of scissors and chop off all the excess material that comes off her arms when she wears them!

One of the characteristics of Charge Syndrome can be delayed growth. The 'R' in CHARGE stands for retardation of growth, and many times kiddos might be missing a growth hormone. With all that said, M is being tested for this with her next lab draws. Blech. I hate when she has to get poked.

If anything shows up missing or being off with the results, then we will be adding one more specialist to our list of a bajillion specialists -an endocrinologist. Sa-weet. We love going to Doctor's appointments.

But seriously, I love that my boo boo bear is small. It's part of what makes her who she is...and it just adds to her cuteness.

We will keep you updated on the results, and in the meantime, our shawty will just keep on goin'.

Go, go, go...

Some Exciting and Some Not So Exciting Things...And A Whole Lot of Randomness

I'll start with the exciting stuff first...

We finally got a hearing aid for Moriah! We have waited for this little tiny device for so long and now we finally have it. What a relief. I'm looking forward to the new sounds she will be able to hear, and the more songs she will be able to sing =)

I know we will have another battle on our hands with getting this hearing aid to stay in her ear. The moment I stuck it in, she wanted to take it out and chuck it across the room. Ack! Thankfully, she's been getting better, and sitting for longer periods without taking it out.

Onto the not-so-exciting...

We've still been dealing with some pretty bad cycles of Cyclic Vomiting, and have exhausted all options GI-wise. It's just so hard when you know that this is something that can only be managed with medication, and a condition that cannot be cured. It is definitely not as bad as it used to be, which means the medication she is on is helping (Neurontin, Cyproheptadine, and prn doses of Ativan), but because she had been fighting an infection for the past month, her symptoms were really exacerbated, and we were always on the verge of taking her into Packard because we were worried about dehydration (during these cycles, she is hardly able to tolerate food).

Anyway, we are now being referred to Neurology, which I am really not excited about. We've had a horrible experience with the Neurologist at CHLA, and when Moriah was in the CVICU at LPCH, in the prime of her Abdominal Migraines and Cyclic Vomiting, it felt like the Neurologist was hesitant to believe me about Moriah's symptoms and ended up telling me that children with CHARGE Syndrome are known to be irritable (it took a lot for me to not scream my head off at that moment). With all that to say, we haven't had the best experience with Neurology, so I am hoping for a real gem when we have our appt =)

Other than that, we are still SO THANKFUL that we have Moriah home, and grateful to have the consistency of care between Justin and I, and her Nurses, as well as the ability to be in close communication with her Doctors. We truly see the difference having our child at home with us, and hope that one day the Bay Area would be able to promote a Home Vent Program for families. I want to see parents more equipped and encouraged to take care of their children with trachs/vents, and not think that they have to be in a sub-acute facility until their child is de-cannulated. It breaks my heart that this is the "norm" around here, and truly pray for a breakthrough...I just want families to experience the joy that we are experiencing right now having our girl home with us - with trach, vent, and the whole nine yards.

Thanks to all of you who have been helping me get our friends' blog addresses back. All of these families mean so much to us.

Pregnancy has been going well. I can say that I have a basketball in my tummy now...and Im only 18 weeks. I go for our fetal echo and level 2 on Tuesday. As it gets closer, I've been getting more and more nervous about it. Will for sure update after.

And also, thank you to those of you who have been donating towards our LPCH Church Plant. We are so excited to see where God takes this. Yes, we are nervous that we will pour a lot of energy into this and that no one will even show up! But, we truly have open hands with it, and want to at least try to reach out to families in need, knowing how much we craved the spiritual support while we were there. Again, the first service is February 20th, and you can count on us to share how it goes!

Love,

Victoria

David Brown, At Last

If you have a child with CHARGE Syndrome, you probably already know the name "David Brown."

"David Brown has been a Special Education Teacher for 34 years, and he has a credential in teaching students with deaf-blindness. He worked as an Itinerant Teacher for Sense (The National Deafblind Association) in England for 18 years before moving to California in 2000, where he has a similar job with California Deaf-Blind Services. He has special interests in CHARGE Syndrome, Early Intervention, assessment approaches, multi-sensory issues, and in the collaborative interface between education and therapy." - taken from an internet source

We are lucky enough to live in the same state as David, let alone an hour away from him, and were so pleased to finally have a visit from him at last.

Even though I met David at one of our BASIC gatherings, Moriah's "Communication" therapist, Mariah Roberts, knew David as well, and helped facilitate our meeting.

David has met and evaluated children with CHARGE from all over the world, and Moriah was his 48th friend in CHARGE. =) Before going into the school system once she turns 3, Mariah Roberts thought it would be a good idea to have an evaluation written by David to give to the new team.

l to r: Mariah, me, Moriah, and David

Moriah enjoying the new goodies that Mariah brought for her to play with

Playing on a resonance board to amplify the sounds and movement of toys

In the afternoon spent with him, I felt like we learned so much and/or were validated with things we already felt or knew about Moriah.

Thank you David for coming, and thank you Mariah for organizing our visit!

**And just a side note (mostly geared towards our family members) there is a

CHARGE Syndrome Foundation

we would love for you to join. It is a non-profit that helps to support and further the research for individuals with CHARGE. Justin and I are only now getting around to becoming members (only $25), but we realize how much information we have found here that has helped us along the way, and we want to help in any way we can to support this cause. Thank you!

Charge Syndrome

So, this is how rare and new CHARGE Syndrome is...

The first known book on the subject was just published, which includes several of our friends in CHARGE on the cover...they are such cutie pies! =)



Overview
CHARGE syndrome affects approximately 1:10,000 births worldwide, is extremely complex, and has varied medical and physical manifestations. It was first described in 1979, named in 1981, and only as recently as 2004 was a gene for CHARGE found. In addition to a host of other conditions, most individuals have communication-related problems, including breathing, swallowing, hearing and balance, and speech.
Each of the editors is established as an expert on CHARGE syndrome and has received the highest award bestowed by the CHARGE Syndrome Foundation, the Star in CHARGE, and represent four different disciplines: sensory genetics and neurodevelopment, genetic counseling, audiology, and psychology. They have concluded that studies have advanced to the degree that a single source of information is necessary. This, the first known book on the subject, describes the sensory, physical, and behavioral findings in CHARGE, indicates what kinds of studies need to be done to confirm the findings, and describes how these findings affect the function and development of the individual with CHARGE.

Eventually, I'll get around to ordering our copy of the book, but it is nice to know we have a book reference now when we are trying to explain CHARGE to all the specialists we come across.

If you are interested, you can go here to find out more about this book.

Never expected that one day there would be a textbook that I'd really want to read.

Oh, how things change =)

Two Years

I was just going through my email inbox, trying to delete all my junk mail. I came across this one email from Justin, from over two years ago, when he was updating all our friends and family about Moriah (it was before we set up the blog).
Moriah just turned 1 month old.

My heart hurts a little to read this. I remember all the emotions that accompanied this time, finding out about Moriah having CHARGE syndrome. I thought that the open heart surgery was painful enough...but then to learn that your child could possibly be blind, hearing impaired, delayed, and so on and so on. We didn't know what to expect and our world was spinning.

We clung to God...but mostly, we felt God carrying us when we couldn't go on anymore.

Feb. 24, 2008
Hello everybody,
Victoria and I just wanted to let you all know what's been going on today and this past week. This afternoon, Moriah had 2 seizures where her heart rate and oxygen levels dropped drastically. We still don't know how it happened, but we should know more by tomorrow. Right now she is stable. They've given her some anti-seizure medication and is sleeping comfortably.

We also found out this past week that she has C.H.A.R.G.E. syndrome. It's a compilation of complications that she has. Essentially, we got information that she might have issues with blindness, deafness, growth and her kidneys. She also has something on her lungs that the doctors are unsure of. We were told it could potentially be tumors, but they aren't sure yet.

Obviously, this has been a heavy week. We don't know how things are going to turn out. But we do know that Jesus is in control. Victoria and I were talking towards the end of the day, reflecting on how things have been going. It's crazy, but through all the tears and fatigue, Jesus has been filling us with a peace and joy that is beyond our understanding. I've been reading Matthew this week, and I've been chewing on these verses:

"And even the very hairs of your head are all numbered. So don't be afraid; you are worth more than many sparrows."-Matthew 10:30-31

When I read this, I thought about Moriah, and how God knows every little bit about her. There is nothing He doesn't know, and I can't tell you how much His sovereignty has meant to us. Not one hair will fall unless He lets it. We've come to a point where we just don't know how this is going to turn out, and to be honest, it isn't our place. Jesus has been so real and loud and present that we know that whatever He chooses, it'll be alright because He loves us. It's just so cool because we can't help but feel that God is pursuing us, not letting us quit, and giving us the joy of being intimate with Him. Not because we are doing anything, but rather He is just straight up good and awesome, and His love is so thick we can't get away from it. We love Him...Dude, what a rad God we serve!

We have come out of these past two years so much more humbled, so much more blessed than we could have ever imagined, and so much more intimate with God. Through the pain, heartache, fatigue, and beat-up knees have come some of the deepest, richest, most intimate feelings we have ever had in our lives...including learning one of the most important lessons in life: learning how to live life the way God has intended for us to live.

Plus, God has given that girl a lot of unruly, wild hair, and He still knows how many are on her head...He's gotta know what He's doing =)

Thank you all for your love and support during these past two years. We know this has been a long and tiring journey for all of you too, but the way you have loved and continue to love on Moriah...it is beyond words.
Thank you from the bottom of this mama's heart <3

BASIC

Stands for Brothers and Sisters in CHARGE

Several weeks ago, many of us moms who have children diagnosed with CHARGE Syndrome got together. I would have never guessed that there were so many of us in the Bay Area!



Not only was this such an encouraging time, but I really gained a lot of information as to how to go about certain things in the future dealing with therapies and such for Moriah.

All I gotta say is that if you ever meet a parent of a child with CHARGE, you should probably sit down before they blow you away...these people know their stuff!

I look forward to seeing all of you ladies again in a couple months...and to meet the rest of your families.

P.S. If you know anyone in the Bay Area who has a child with CHARGE, please feel free to give them my contact info so that we can invite them to our next get together. Thanks =)

Immunology Clinic

This past Wednesday, Moriah had an appointment at the Immunology Clinic at LPCH. Here, she met with Dr. Nelson and Dr. Lewis, the head of the Department, and they came up with a few more things that they wanted to look at with her case. I couldnt tell you the names of the things they suggested if my life depended on it. But I do remember them saying that they wouldn't be surprised if Doctors started screening for immune deficiencies in children diagnosed with CHARGE, just like they do with DiGeorge kiddos. The only thing obvious with M is that her t-cells are low (but function normally). We did talk about the fact that Moriah is much stronger now and is getting these infections/illnesses/fevers a lot less, but they all seemed to agree with me that there is something underlying that would be nice to find a "name" for. They drew some blood, and we will be following up with them soon.

This is our favorite EMT crew who totally loves on Moriah, and entertains her in the back of the ambulance with Rob Zombie and Dora. We love you Jo, Noella, and Trish!

Moriah waiting in the clinic, ready to get the show on the road.

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...

CHARGE Syndrome

We received a call from Moriah's Genetic Doctor, Dr. Anna-Kaisa at LPCH.

Moriah has the gene for CHARGE Syndrome. It's confirmed.

Neither Justin and I are carriers, which means the variation in the gene happened at conception.
This also means that there isn't a high risk for our future children to have CHARGE.

This doesn't change anything. She's absolutely perfect in our eyes. God made her exactly the way He wanted her.

Our eyes were really opened to these passages after having Moriah...
Even though we might not always understand why, we do know that God has a reason, plan, purpose for everyone and everything.

You made all the delicate, inner parts of my body
and knit me together in my mother’s womb.
Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
You watched me as I was being formed in utter seclusion,
as I was woven together in the dark of the womb.
You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out before a single day had passed.
Psalm 139: 13-16

As Jesus was walking along, he saw a man who had been blind from birth.
“Rabbi,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”
“It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him."
John 9: 1-3

We know who is really IN CHARGE! =)

Much love,
Justin and Victoria

Tired today. M had a CT scan of her head this morning. The geneticist wanted to see if she was missing some inner parts of her ear because this is a characteristic of CHARGE syndrome. The preliminary results are showing she is. Of course. Our daughter can never just have a test done without giving the Doctors something to look at...and giving Mommy and Daddy even more medical information to learn. Don't know what this all means as far as her hearing is concerned. I'm sure we will find out soon.
The good thing is moriah is doing well.
September 9th will be the day.
Starting to put all our ducks in a row and tie up all the loose ends...home ventilator, home nursing, stroller to accomodate the village that we will be traveling with, carseat, etc.
Did I mention that I was tired?
Thank u to the many of u who are wearing the blue ribbons. Don't forget to send me pics so that I can one day show moriah all the people praying for her to go home.
That's all for now.
I think I'm going to take a nap...or at least dream about taking one =)
Love,
Victoria