Approved

Abeni's surgery in Cincinnati has been approved!!! Thank you for all of your prayers. We will be busy today booking flights and packing our bags.

Utah Runner Girls 5k

Heather, Karli and me before the race.

Saturday morning I ran the Utah Runner Girls 5k. It was a fun race. My bestie Heather and my Sister Karli ran with me. I wanted to finish close to my personal best time which is 32 minutes. With all the sickness and stress around here lately though I haven't been training like I should. I just decided I would take off and run hard. I did and I finished in 29:44 WAHOOO!!! Go me! I felt pretty good during the race all except for that nasty cold I can't seem to shake.

After the race

My support crew. One amazing hubby and my super cute cheering section. 

The Ball

My kids have taken Kindermusik classes. I LOVE them they are super fun and the kids seem to really learn in the class. One of the songs sung at kindermusik is "I roll the ball to you." The leader of the class sits in the front and rolls the ball to each of the children in turn while singing "I roll the ball to yo; you roll the ball to me; I roll the ball to you and you roll the ball to me." This game teaches turn taking and patience.

I guess I am supposed to be learning turn taking and patience. The last three business days I have been playing "I roll the ball to you" with insurance, and Dr's. Our insurance says they will cover Abeni's surgery. They however insist that we first exhaust all possible in network providers. First they said we would have to go to Colorado. No one in Colorado does this type of surgery. Now they say we have to go to Phoenix. There is a Dr. there who does airway reconstruction (he actually did his fellowship at Cincinnati Children's) Well today I pulled out the big guns. I called Abeni's local ENT. I was transferred to his personal assistant. She said that Dr. Smith is set on Abeni having her surgery in Cincinnati. He had already written a letter to our insurance and has been in contact with Dr. Manning many times over the last month. I asked that he please send the information to the surgeon in in Phoenix (who I am sure is a great Dr.) She said perhaps we could bypass all of that by Dr. Smith just calling that Dr. and explaining Abeni's case. So that is what we are waiting on now. We are still planning a surgery on November 8th. I see her local pulmonologist Monday the 29th and I can't wait her breathing since the weather has gotten cooler is very "noisy." I listen to her before and after her breathing treatments and the it just keeps sounding more and more narrow. I hope this can all be ironed out soon. All the unknowns are taking a toll on all of us.

November 8th

November 8th will be the day of Lil Bit's big surgery. It seems like the perfect length of time away. It's less time for me to worry and plenty of time for me to get ready. Our insurance is saying that for them to pay we need to do this at an in network hospital. I hope that we don't have to fight too hard to get them to agree that Cincinnati is the only option.

The Plan

Since Abeni's airway is going to require a specialized team of surgeons to repair we will be traveling to Cincinnati Children's Hospital for the procedure. We have a treatment plan. I'm hoping I took notes correctly when the nurse practitioner called. Here is my version as of right now. Michael will be with me in Cincinnati for the surgery. We are not sure right now when he will come if it will be on day one or on day three and then he can stay two days longer into recovery.

Day One:
       Abeni will have a consultation with anesthesiology. Since she has an airway condition and asthma, sedation for her is more dangerous. We need to meet with the Dr's and make a plan for her sedations over the course of her treatment.

Day Two:
        This is a day full of imaging appointments. She will need to be sedated for the procedures since it is critical that she be absolutely still. Abeni will have two separate high resolution CT's. One of her heart and most critically her pulmonary artery. Then they will image her lungs and airway.

Day Three:
        Clinic visits. Abeni will see lots of Dr's in their clinics. We will see cardiothoracic surgery, pulmonology, and otolaryngology. This will be a chance for each of these specialists to talk to us about Abeni, her treatment plan, and a chance to examine her when she is not sedated. I'm assuming we will also have some blood work done on this day if it isn't done before hand.

Surgery day:
      Abeni has a narrowed right bronchus. Is is sandwiched between her pulmonary artery and her esophagus. The team of Dr's in the operating room will include, Dr. Rutter (ENT who specialized in complex airway conditions where the heart is involved), Dr. Manning (cardiothoracic surgeon who will be overseeing the bypass machine and the majority of the surgery), and one other heart surgeon, there are also a few Dr's who have asked to observe. Abeni will be put to sleep and then they will open her chest and put her on the heart lung machine. They will then carefully move her pulmonary artery from and esophagus from her bronchus. They will then repair the damaged part of her airway. When they are done they will take her off bypass be sure everything is functioning well and close up her chest.

The recovery:
      We think Abeni and I will be in Cincinnati for a while after surgery while Abeni recovers. She will spend some time in the ICU and some time in the general hospital after her procedure. She will most likely even need to stay in the Cincinnati area after she is discharged until it is safe for her to get on an airplane.

It is major surgery. MAJOR We are scared. I find myself kissing her sweet little perfect chest over and over. I hold my boys tighter as I think about being away from them for an extended period of time. Strangely though it feels so much like the right thing to do. I keep repeating "God won't lead you to it unless he plans to lead you through it." I'm remembering that I have always been led down the path God intended me to go. I am leaning on Him to lead me through this.

Where We Are

Abeni has a complex airway. We have known since about two months after she came home that she would eventually need airway reconstruction surgery. In August our otolaryngologist (ENT) here in Utah examined Abeni for her follow up. At that appointment he seemed fairly confident that while we can't try balloon dilation anymore, she was doing ok and we could wait a little longer on the surgery. He ordered a chest CT, just to be sure, and he asked our permission to share about Abeni at a conference. We waited to hear from him but then the weather changed, some smoke from wildfires blew into Utah, and Abeni got sick. She sounded awful! I called his office and asked that they send him a message. He called me later that night, he had been waiting to gather just a bit more info before calling me, but wanted me to know that we would be moving forward with surgery after all. No one in Utah has the experience or the knowledge to safely do this complex correction. He told us he was sharing the info with Cincinnati Children's Hospital and that they were the top hospital for this type of procedure. He needed a week to get everything moving forward and told us he would call when things were ready. He called about a week later. He told us he had talked to Cincinnati and they were ready to move forward. We would be hearing from them. Not two hours later they called and started inputting Abeni's information into the computer. Abeni still sounds really loud when she breaths and has been diagnosed with asthma in addition to everything else that is going on. We really feel that this is the best course of action for Abeni and are moving forward with the construction.

Getting to Know Us

My hubby and I have been happily married ridiculously in love with each other for  almost 10 years. No really two neighbors in the last month have commented on this. We met in college and because we are both not patient people spontaneous we were married just a month and a half after we started dating. We love being together and he still cracks me up. Michael (luckydaddy) is in the army. Michael loves a good Harley ride and is into endurance challenges. He runs relays and mud events. He digs movies and music and likes spending time with his family. I'm Ari (luckymama) I am a domestic goddess. My seven year old calls me the crazy, homeschooling, mormon mama. I took up running this last spring. I homeschool my kids, and some days it's quite the challenge. I like reading and if I had some spare time I would probably spend it with my family and a big bowl of popcorn.

Miles is our oldest child he is sweet and spunky and makes us laugh everyday. He is seven years old and about as intelligent as they come. He taught himself to read at two and a half and hasn't stopped yet. He loves video games and wants to learn how to code so he can make iPad apps. He loves breakdancing and star wars and is so much fun to be around.

Isaac is five years old. He has never met a person he didn't love. He is sure everyone he meets loves him right back. He is right. Isaac loves giggling and is always finding something to laugh about. He has a brain injury from when he was five months old. I blogged that story here. Part one Part two Part three Isaac still has lasting effects from this life changing event. We are always seeking out more answers and better care for our little man. If you ever get the chance to meet him ask him for a hug there is nothing in the world quite like an Isaac love. 

Abeni was born in Seoul, South Korea. We were blessed to adopt her two years ago. I blogged her story here and here. She can dance with the best of them and loves anything sparkly. She thinks mama's arms are the best place to be, and loves having her whole family together. She has some remaining language delays and some health issues that we will be confronting head on in the next few months. We are so richly blessed to have the honor of being her family. 

Just another kid

Having a brother or sister (or both) with special needs means that your typical child is going to have to sacrifice. It's hard to admit but it's the truth. Miles is only seven and he has often been staying away from home so Mommy can be with a sibling in the hospital. He is often asked to sit quietly through yet another Dr's appointment. I try hard to let him be little and tell me how he feels about all of this. Never will I be able to shield him from the responsibilities that come with being Isaac and Abeni's big brother. It is a job he takes very seriously. "Mom if anyone ever messes with Isaac they are going to have to deal with me and Beni!" Yes he gets it. But sometimes it is hard. "I'm feeling left out mom." Sometimes he makes insightful observations, "It stinks that Isaac falls mom; sometimes it makes me sad."

Just like everything else in life there is a flip side to the hard part of this coin. There are wonderful gifts that come from being Isaac and Abeni's big brother. Sometimes I need a reminder of this. At our last visit to Now I Can I was blessed with one such reminder. We arrived just a few minutes late and I was rather harried. I got Miles and Isaac out of the car and asked Miles to walk in with his brother. Then I got Abeni out and put her shoes on. I met up with the boys just as they were getting to the door. There was a little girl about Miles age there who was in a walker. She was nonverbal and was upset that her mama wasn't with her. She was standing near the door whining and pointing for her mama. Miles walked right in looked at her in the eye raised his hand and said, "hey." That was it. Then he went on his way toward the "family room" to play on the computer. I was thrilled. He had seen this little girl. He had treated her just like any other kid in the whole world. It was a perfect moment for me. Miles has spent his childhood around kids who are different. To him this little girl was just that a little girl. These kids and adults are just like anyone else. How lucky he is to know that people are people.