Children's Hospital of Orange County Walk in the Park 2012

It's that time of year again! This will be our 2nd annual Children's Hospital of Orange County Walk in the Park at Disneyland.  Last year we completed the 5K walk in honor of our daughter Paige and the eventful year we were then in the middle of.  We were only a month or so away from her next major surgery to fix her palate.  Her nose and lip were fixed at 3 months and her palate at 11 months at the main CHOC facility in Orange.  She also had two ear tube surgeries at 2 months and again at 11 months through CHOC, Mission Viejo. Like so many families and children in Southern California, we hold CHOC very near and dear to our hearts.

It's a special place with Children in mind, that is for sure.  It goes beyond fun colors and waiting room toys.  The care is truly the best.  Children are flown in from all over the county for any acute emergency needs and when we were told our daughter would have a cleft, there was so much comfort in knowing we had access to the very best care.  The Craniofacial Team is very amazing  and experienced.  They guided us through the end of my pregnancy, the first year of care and continue to be in our lives probably until Paige turns 18.  

When you enter the Hospital you will see signs of its close relationship with Disney. Disneyland is only a few miles away and characters and special events like the CHOC Walk help bring families together and cheer up small children going through amazingly difficult things adding a little more happiness in their lives.  When we stayed overnight for both of Paige's major surgeries we saw toys, movies and books to entertain littles and even adults who have to stay.  Children were often taken to tests or for a ride around their floor in red wagons.  A sweet black and white cocker spaniel, named Buddy, visited the rooms.  Volunteers came into see if there is anything to make our stay more comfortable and since we were there a few weeks before Christmas, Paige even got her own build a bear as a gift.  

These are some of the amazing things that help to cheer up the place.  But one thing I did notice in the wee hours of the night while holding my child, connected to machines, smelling like Beta-dine, and sedated, sometimes in pain and hoping she will eat more or act more like herself soon....we were in a hospital.  A place that so many children come in with way worse conditions than my daughter.  A place where little ones sometimes don't go home.  And this is when I am grateful for the amazing care and medical staff that provides for these children and tries to accommodate the families. I want everyone to have access to this care.  And through events like this Walk and donations from people like my friends, family and people like you reading this, they can offer care to all.  The Walk is coming up very shortly. We have one week to collect donations and I am asking for a final goal of $100 more, bringing my total to $555.  Please help me make this goal...with $5, $10, $20 or more. It is greatly appreciated by so many.

My Personal Donation Page- Click here to donate!

So I might have used my daughter to inspire donations. I thought it would be fun to get people involved by making a short term goal to raise $100 in 24 hours. If we reached that goal we would take Paige out for a Special Hot Fudge Sunday to celebrate.  She was so happy!! It really blew her mind that something to yummy existed in this world. And I hope those who contributed to make this happen enjoyed seeing her so incredibly excited! Thanks guys,

This is Paige and I at the CHOC Walk last year.  Ever since she was born we have made efforts to wear her in a baby carrier to keep her close and confident.  She loves it! And so do we.  Last year I wore her during the walk. She got to experience everything from up above and stay close to mommy, while we moved easily through the crowds of people. This year with my mommy group and friends I have met in the So-Cal Babywearers group on Facebook, I am leading a team of 10 adults, so far, plus babies and kiddos for the Walk.  Together we have raised almost $1000 for CHOC! You can join our team if you'd like or donate to one of the members who needs to raise a min. of $50 each.
Walk is Oct. 14th, 2012.

So-Cal Babywearers Team Donation Page

I have had fun designing a Team tshirt to inspire our team and share with others who we are and why we Walk.  It was a great experience last year seeing all the shirts from teams walking for so many different reason.  So many stories to tell.

I started with a basic idea and one of our local moms in the So-Cal group made our babywearing logo for our shirts really come to life, even adding the perfect touch of the Mickey ears to the sweet little baby. 

This is our group taking over Disneyland at one of our playdates. We have so much fun together. I am glad I get to share this experience with so many of them.  Many have really risen to the occasion and come out to support our local Children's Hospital by walking and raising donations of their own!

Speech Therapy....Finally A clear answer!

We finally got a call from Paige's pediatrician in regards to getting her speech therapy with a qualified therapist who has experience with clefts.  He talked to a Medical Director of our insurance company and determined that we had coverage at our local hospital's Sports & Wellness Center for outpatient Speech Therapy and Occupational Therapy if she might need it.  The "Sports & Wellness Center" wasn't quite where I expected to find this quality care, so I never even knew to look.  But I am so happy that after almost 6 months of searching and dozens and dozens of phone calls, somebody figured it out;  Proper communication happened and I very much appreciate our ped. for following through and making it happen.

Phil says "Dr. K is solid." And that he is.  I brought up my insurance woes again at Paige's appointment yesterday and he said, "She is an obvious candidate for speech therapy.  They have to provide it to her. Its an open and shut decision. Leave me the info I need and I will see what I can do."  I received a call about 5:45pm that same evening and he had done what no one else seemed to...gotten the real deal... a real workable and positive answer.  It may not be any of the three office that work with our Cleft Team but Paige will be getting the care she needs. Thanks to everyone who has offered advice, encouragement and prayer on this.  You guys are also "Solid."

Here are some recent pics of Paige for your enjoyment! She makes being a Toddler look like so much  fun!

Meet our Friend Andi and win an Awesome Andi's Smile Page Tote

In celebration of hitting 10,000 "Paige"-views on this blog, I will do a special giveaway (at the bottom of this post) and I would like to introduce you to someone very special in the Cleft Community who inspired me and many others. 

Now eleven, Andi founded Andi's Smile Page on Facebook in 2010, to raise awareness of cleft lip and palate and to raise money to help kids around the world get surgeries to repair their lips and palates.   Andi was born with a cleft lip and palate herself and has had ten surgeries already.  Andi has big dreams to help children all over the world who can't afford surgeries, do not have insurance or access to some of the best care like so many of us. She was concerned by the fact that in some other countries many people with clefts and their families are shunned and considered outcasts by their communities, because of this very common birth defect that is also treatable.  Her big dream has raised money for over 50 surgeries through Smile Train and she has over 3,431 likes on Facebook!

Andi brings awareness through her facebook page by posting "The Smile of the Day," a picture of a child born with a cleft...some repaired, some not and sometime even a little more grown up.  People get to leave them comments and "Like" their picture to just love on them and tell them what a blessing their beautiful smiles truly are.   

Andi raises money for Smile Train through the sales of special items with clever and inspiring cleft friendly slogans.  By posting the "Smile of the Day," many family and friends buy shirts and onsies that tell the world that their little one was the "Smile of the Day" and brought a little sunshine to those who follow Andi's page.  She has also started selling the Andi doll.  It has Andi's likeness and a small lip scar.  

Order one of her designs from Cafepress and all proceeds go to helping children with clefts get much needed surgeries!

Click Here to Order

  

  

Paige is a Smile Ambassador on Andi's Smile Page and where ever she goes!!!

Paige with her cleftline.org bear (where she is featured on their site with her bear)

 and her 5 week picture before repair

Or order an Andi Doll here!

http://www.andismile.com/my-dolls.html

Or visit Andi on smiletrain.org here to Donate Directly

Andi has also collected goods for care kits for families staying in a Ronald McDonald House when their child is undergoing surgery here in the US.

Recently Andi received a Community Hero Award in the county where she lives. We are very proud of you Andi!

See my daughter Paige and what Andi's Smile Paige did for us!

Paige has been featured now quite a few times as Smile of the Day and it has always felt good to discover this special surprise and see all the warm thoughts and love poured over our sweet girl.  Its also fun because we get to see many of these kiddos grow up over time and go through their different surgeries.  Click below on a few of the links and see Paige at different points throughout her first year on Andi's page.  

Paige's 1st time as Smile of the Day

Love on Paige's Surgery Day from Andi's Smile Paige!

Paige as Smile of the Day May 11th, 2011

Paige as Smile of the Day August 23rd, 2011

Paige as Smile of the Day January 17th, 2011

Andi has helped raise enough for over 50 surgeries through Smile Train.  She started with the goal to raise one and didn't stop there....She says "Dream Big," and for her she is not done dreaming yet.  I hope Paige takes after Andi, standing strong and sure of herself despite her cleft and reaching high with whatever she dreams of.  

To win this awesome Andi's Smile Page canvas tote, which the purchase of also went to help a surgery.... please

1. "Like" Andi's Smile Page and leave a comment on the post of this blog on her page.

 Click here to go to Andi's Smile Page on Facebook

2. Follow my blog----->

3.  Make sure to leave a comment below on this post and let us know you visited!

The Winner will be drawn at random from the comments left on this blog post and the post on Andi''s Page! Random drawing will be done June 4th, 2011 after 12:00pm pst
Winner must be Domestic Shipping only

Random drawing will be done May 31st, 2011 after 12:00pm pst
Winner must be Domestic Shipping only

Blessings and trials....

Blessings abound...

It was that time of year again. March came around and we went to CHOC to meet with our team for Paige's annual panel review. We have come so far since the last one that was scheduled a few weeks before her lip and nose repair. We weren't expecting any surprises. Her lip and nose look great. Her palate is fistula (hole) free....She is happy and interactive. Meeting or exceeding most milestones. Since her palate repair she had jumped from 20% to 45% in weight due to more efficient sucking and the increased ability to eat solid food. The plastic surgeon even said the large notch in her gumline seemed to be closing a bit. 

Paige drawing at the CHOC appointment 

Daddy entertaining her to pass the time.

We see many specialists and doctors at the appt.  The whole process takes 2.5 hours.

The tough times....

As parents of a child with a cleft there are quite a few challenging events and experiences that we face, from finding out, to feeding; finding a surgeon, to getting ourselves and our child through multiple surgeries.  So as parents of a child with a repaired cleft, we assume our troubles should be much more trivial, yet they somehow can be just as trying to our systems and lives. Our biggest challenge recently, seems to be getting our Speech Therapy group approved by our new insurance as of January 1st. She was supposed to be seen 6 weeks post-op which would have been mid-January. The team agreed again she needs to be seen and evaluated for an early speech stimulation program and on going monitoring since she is missing a few normal consonance sounds and clearly early speech intervention helps children with clefts develop better speech and communication. Other than that she mimics many sounds, communicates with several words and signs and chatters in a conversational style. 

When I discovered our insurance didn't cover any of the speech offices that work with our team, I searched for a provider that would be "in-network." My search concluded with finding one in a 25 mile radius. One! I called her and she said she didn't have experience working with children with clefts and I should continue to persue treatment with someone who did and specifically one who worked closely with our team.  So I applied to be granted network adequacy. And promptly got denied.  Reason: The physician requested is not in-network and there are providers in-network we could see.  Oh really? I checked again.....ONE. So I resubmitted the referral request through the pediatrician who sent in more supporting charts and documents, and.......we got denied again for the same reason.

I requested a case manager who said "We are not denying her speech therapy, just denying coverage of the physician you have requested.  And since it was already reconsidered and the decision was finalized it probably won't change."  Me..."But you only have one person we can see and that therapist doesn't feel that she is adequate to see my daughter.  How is my daughter supposed to get proper treatment?"......"Well there is only one more thing you can do. Have the requesting doctor call and talk to one of our medical directors, peer to peer, and have them explain further why she needs to see someone out-of-network."  She also wanted me to fax the new notes and directives from our team panel review, having to do with her need for speech therapy with "RECONSIDERATION" in big caps. 

In the meantime I received a $284 bill for the speech and audiology portion of our Team appointment.  I assumed it was all billed through CHOC as one appointment.  The specialists were provided to us. We didn't ask and they didn't tell us that they bill separately.  We didn't receive a bill last year because our old insurance covered everything.  My husband's work even switched to this new insurance because everyone was supposed to get better advocacy and would most likely not even notice a change on coverage. 

So here we are about a week after I asked the head of our cleft team, the person I thought had the most weight and opinion about the matter, to call the insurance company directly. I skipped my pediatricians office this time, considering they really are the middle man in all this.  And now it is the waiting game again.  Please pray that this works because we are about at the end of the line. The next step would be paying out of pocket or going to the therapist they provide anyway hoping she can help somehow make sure our daughter doesn't struggle too much as she acquires language in this critical time.   I have never been so discouraged by the medical process.  Getting my breast pump required 10-15 phone calls but my stubbornness paid off and I got a good quality one for an entire year.   I truly feel that people with less drive, or shyness, or maybe even a language or cultural barrier would just give up and not be able to fight for what their kids need.  I am Paige's advocate and I will get her the best I can provide.  So for those of you going through your own cleft journey, know that you will get through this no matter how frustrating the process or pain and discomfort you witness your little one go through.  It all happens in mini bites and stages.  Some hurdles bigger than others.  Some mountains. And you will look at your perfect little child and know in your bones all of it will be worth it. 

I honestly ask for prayers as we face the next few weeks 

and years of getting speech therapy for Paige.   

Paige on Easter 2012

Give a Smile to a Special Child

Meet Judah...

A fellow cleft mommy, Ali and her adorable little one, Judah are raising money for Operation Smile. Like Paige, Judah recently had his surgery in a wonderful high-tech American Hospital and out of their gratefulness, his family hopes to raise enough for at least one surgery for a cleft child in need. It's incredible that through this organization it would only be $240 to give a smile to a beautiful child. We are so blessed to have access to the most amazing medical care in our country and my heart goes out to those areas where it is difficult to get the care for these children. The gift of a smile changes the life of that child in so many ways. I want to call all of Paige's friends, family and supporters to give in her and Judah's name and help them reach their small goal.  It would be awesome if we could blow it out of the water and pay for many more surgeries than just one. Thank you for your prayers, love and support.  Spread the word and raise awareness of how special and wonderful our cleft babies truly are.

Donate here------> Support Operation Smile in Judah's Name...friend of Paige

Love this video of a little girl who has her repair done at age 4. Watch when her face light up when she see the results for the first time.
Operation Smile Video

We love seeing Judah grow and he captured our hearts from the start.  He had his surgery about a month ago and is really doing awesome.

See Ali and Judah's blog here-----> Our Journey with Judah

Judah pre-surgery

Post Surgery!

Healing so well!

Our baby sucks!

That's right it only took 13 months for her to learn to do something most babies come into this world doing instinctively. She never had suction. Breastfeeding did not work for us though I am still pumping and giving her as much breastmilk as I can. Having a hole in her palate is like having a hole in a straw.  After her palate was repaired I fantasized about maybe being able to breastfeed her. She didn't automatically get the sucking thing, returning to same old tricks she learned to get the milk from the bottle. Her mouth would be open and she would put the nipple to one side and bend it against her lip to squirt the milk in. So ya, she had no desire to wrap her lips around the bottle's nipple and create a seal.

Recently we have tried some sippy cups. The problem is most parents are in search of the perfect sippy cup that doesn't leak everywhere. We needed one that would flow without much effort on her part. We tried those rubber ones that she could bite down to open the opening, but she still wasn't really getting a lot. Then we tried cutting that hole bigger so it poured out. It was a messy alternative but gave her the idea to throw her head back and let the water poor into her mouth. Then one time she stole a sippy cup from her cousin and seemed to be getting something from it. It was one of those cheap Toss & Take kind that have no leak proof system to it. So we got her some and started giving her sippy cups of water everyday.  She loved it! She would carry them around and lay on her back all cozy and drink her water. I would swear sometimes she was so close to sucking on it....I would occasionally try and squeeze her cheeks together to get her mouth to close around the bottle or sippy cup spout and I could hear just a little squeak and puckering sound but I still don't think she got what was happening.

Finally just today I saw her tilt her head back with the sippy cup and squeek, squeek, squeek and then the gurgling sound of air rushing back into the cup through the inverted spout. SHE DID IT! She was actually sucking....her palate repair is officially a success on that level.  Now for my crazy hopes of breastfeeding my 13 month old child for the first time.............a ya probably not gonna happen!

(So since writing the above part of this post she started sucking on her bottle too. This video seems pretty ordinary when compared to most babies but for me...it was the very first time I have ever seen her do this.)

She has now cut four teeth.  It took a year to get one and three weeks to get four.  The one on the top-right, bordering the large notch in her gumline, is definitely coming in a little crooked and we really doubt the next one over will even come in at all.  Either way Miss Toothy is all smiles these days...teething like a champ.  People ask if she is crabby and all I can think is she is more or less fine.  She gets cranky just like any other 13 month old, especially when tired. I tend to think that the pain of teething is nothing like the pain of lip or palate surgery and therefor she is not phased. Talk to me again when she starts to cut molars.  Paige's palate has healed up and she has been eating all kinds of solid food.  She has definite opinions about mushy baby food, opting for anything she can feed herself.

It truly is a blessing to be moving on to more average trials and experiences of having a child. But we had to have one more hurdle before breezing our way through parenting.  She was to report to the speech therapist 6 weeks after her palate surgery.  Well we switched insurance at the New Year and when I attempted to make the appointment our therapist wasn't covered.  Neither were the other two recommended to us by our team. In fact there was only one in a 25 mile radius that was in our "network."  She even said she wasn't the one for us and that we should be seen by someone with experience with clefts and preferably someone who worked with our team.  It seems like every little issue we face takes an average of 10 phone calls or more and hours on the phone, while my daughter's shreaks and squeals in the background disrupting the automated response services and makes it difficult to hear information I need to  write down in order to prepare myself for the next office or number I need to call.  She wants her mom to sit and play with her, not ignore her on the phone, talking to doctors offices and insurance companies.  She has taken to closing my laptop and stealing my pens and paper or just collapsing her head between my knees and crying.

So.....I finally worked my way to a case manager who handles out-of-network approvals based on "Network Adequacy" or what I would call the lack of adequate coverage. Even when I ask the first associate if this was even an option since there was only one therapist in my network and she avoidantly said "I'm sorry you do not have any out-of-network coverage. You can only see someone in network and looks like there is one."  Well for those of you dealing with this kind of thing, I recommend you call back and you will get another answer and call back again and you just might get someone who asks, "So you have contacted the one doctor in-network? And we have searched a 25 mile radius for any others? And your daughter has a medical necessity to see this other doctor? Okay, so I am going to give you this number and you need to tell them that and that you need them to grant you network adequacy of the Doctor you daughter needs to see." Hallelujah! Finally a break through!

Now I have a reference # and am working to get our pediatrician to gather and send the appropriate documents to prove she needs the care.  So I am guessing it will take about 4-5 more phone calls and 2-3 weeks to process and Paige will hopefully be able to finally see the speech therapist 13 or 14 weeks post op verses the prescribed 6.  Not bad actually considering how things can usually go.  Plus the therapists I have spoken with say it will be okay. It is not too late to start but to be vigilant and do what I have to do to get her seen.  

So again...it is so awesome to be through the first year. To have the two major surgeries behind us; for her to be able to eat, hear, and start to speak. She has started walking across the room over the last few weeks, which still blows my mind. She is working on being a climber, balancing precariously on whatever she can to reach the next great thing. She has a funny sense of humor and as my husband says she is not too little to rule with an iron fist, as she learn to run her little world. Our 85lb dog doesn't even phase or intimidate her in the least.  And she can rock the pigtails like nobodies business.