Long day

Have a great night!!

78 Minutes

I spent 78 minutes on the phone with the insurance company this morning. Half of the time on hold. During that time the babies napped, woke up, both had a dirty diaper, and had a bottle. Aidan watched 6 DVRed shows and played in the babies exersaucer- I am pretty sure he met the weight limit 2 years ago.

He also decided to suck out his brothers' noses....

Without throwing anyone under the bus (and it is a very BIG bus),turns out there was a little very annoying mix-up. So I waisted 78 minutes of my morning fighting with insurance asking for information that they did not have. As of an hour ago, it seemed we were at square one. The insurance did not have any appeals in the works, and advised us that whatever we submitted at this point could take up to 30 days!

WHAT?

We fly to Dallas for surgery in 30 days. That would literally leave ZERO time for another appeal. (I have decided to take a step back, and not focus so much on all the drama regarding insurance. I have to have faith that everything will work out.)

I would much rather be lovin on these guys!

Now I need to go back and be mom, before Aidan tries to nurse his brothers.

Have a great day!!

Facebook

My dear friend Meredith (Meredith's blog) started a group for Landon on facebook. I am so amazed that in less than 48 hours, there are almost 300 people in the group! Thank you all for your prayers and sweet comments to our family. It puts a smile on our faces and warms our hearts when we see how many people are praying for Landon! Thank you, thank you, thank you!

If you are on facebook, and want to join, click here!

Waiting....

Last week I submitted a 4 page letter to our insurance, along with some forms of medical necessity from Dr Fearon's office. We have not started the official appeal yet, because we have to first get the written denial letter, so we know why they are dening us. We also just got our 2nd denial for Landon's procrit, which is supposed to start in 2 weeks. We are not giving up, but it is a long and frustrating process.

Thank you for all the prayers!

Hi

Someone just wanted to say hi....

and show off his pearly whites....

Dallas Trip- Meeting Dr Sacco and Dr Fearon

We are home!!!! I updated our family blog with the fun part of the trip, and tons of pictures!!

On Monday we met with both Dr Sacco and Dr Fearon. Both doctors were amazing!! Our appointment with Dr Sacco was at 10am. We met with him at a Children's Hospital in Dallas. It is never fun to be in the Neurosurgery ward of a children's hospital because you are faced with children who are fighting for their lives, and it is very heartbreaking. It is also a reminder to us that
Landon will live.
Landon will be ok.
Landon will be a normal kid with a really cool scar to tell his friends about.
We know that we have a lot to be thankful for.

We also found out something unbelievable. Meredith said she thought that Dr Sacco was the famous doctor who separated the Egyptian Conjoined twins in 2003. Turns out, he did. This man is so great at what he does that he helped a team of other doctors in the operation that was more successful than anyone could have imagined. Can you believe that??? I can't. It is just another sign that my baby is in the best hands possible!!

This man called Landon from a backdoor in the waiting room:

Dr. Sacco

We were waiting to be called by a nurse from the door that every other child entered. When we were called, I assumed this might have been a PA. Nope, Dr Sacco came to get us from the waiting room himself, and took us straight to his office, instead of an exam room. It was such a personal experience and once again reassured us that he IS the doctor for our little boy.

He went over tons of information, most we already knew. He told us how he would be present for the whole surgery, and how he himself would be removing Landon's skull. He explained that it takes a long time to plan once they are "in" there. Dr Sacco and Fearon will plan together how the cuts will be made, depending on how they plan to put everything back together.

Dr Fearon will then remodel Landon's skull so his brain has room to grow normally. He will overcompensated a little, to lesson the chance for another surgery. He said that Landon's skull will never grow normally, and we want to grow in the way it already has, so that is why they overcompensate.  When he is finished with the remodeling, his skull will be replaced with dissolving stiches and put together like a puzzle. Pretty crazy! The best part, older kids who have had this surgery have not complained of much pain afterwards! There are no pain nerves in the skull, so it is not as painful as one might imagine. He also said to think of it like they are going in to do brain surgery, and remove the skull. Then they say never mind, and put it back on. It is strange to think of it like that, but it does make us feel better.

Landon will be in the OR for around 5 hours, but the surgery itself could take as little as 3 hours. He will not have any IV's or other sticks until he is asleep, so he won't have to feel that pain. He will receive some anxiety medicine the day before to help him stay calm in the unfamiliar place.

We did get some news that we were not hoping for. It looks like Landon has developed a complication called Chiari Malformation. Basically everyone has a hole in the bottom of their skull where the spinal cord exits. Sometimes where there isn't enough room for the brain to grow, the cerebellum will be pushed down that hole and  put pressure on the cord. The doctors are not overly concerned right now. He will now have a MRI on the day of his pre-op in Dallas, and yearly after surgery. Since he is already having surgery they will be able to address it in the same operation. If it had not been found or developed until after his surgery, it would mean another operation. So, at this point it will just make the surgery a little more complex and possibly a little longer.

Our appointment with Dr Fearon was at 3, at Medical City Children's Hospital, where Landon's surgery will take place. We were greeted by Dr Fearon's wonderful office staff and nurses. They knew me as "Landon's mom". (You think I call a lot? Ha, ha!)

We waited in the waiting room...

and the boys played....

and flirted.....

....daddy looks nervous, but we weren't....

...and we took pictures.

Once again....this man called us from the waiting room:

Dr Fearon and Landon

I think it is so neat that these Doc's came to get us themselves instead of having a nurse show us to a room. He took us to his office and right away we felt like we were at home. He took some pictures of Landon's head and went over tons of information. Most of what we talked about, we had already talked about on the phone, but it was nice for James to be able to hear everything I already did.

Landon (as of now) is scheduled for 7:30am on June 29th. If a younger baby is scheduled for surgery that day, he will get bumped, but we are keeping our fingers crossed. He will be given an oral medicine to make him loopy, and that it is before he leaves us. Then they will give him some dream gas, and off he goes. That is when they will do his IV's and whatever else they need to do.

He will be in the PICU for the first night, and the regular floor the second. As long as everything is going ok, he will be release on THURSDAY! I can't believe it is so quick, and I have to admit, it does make me nervous. But, we have planned to stay in Dallas until Sunday, so that way we are close to the hospital.

He will sleep a lot the first 24 hours, and then slowly return to his (new and improved) self. His eyes will probably swell shut, and they say that is very frustrating on the babies because they can hear everyone but they can't see. I am going to put some sensory toys in his crib to get used to now, so after surgery they will bring him comfort.

We still have a lot to work out as far as logistics, but we are one step closer to surgery day.

Only 6 and a half weeks.

Thanks for checking up on Landon!!

Leaving on a Jet Plane

It is weird to have two blogs. Sometimes I want to post the same thing on both blogs, because it is relevant to both.

Landon's blog is to document his journey. It is for us to look back one day, and remember how hard these days were and how we made it through. It is for other families going through the same thing in the future. I found so much comfort from other blogs about children who were "on the other side" as they call it. I hope that I can bring some peace to families who's journey won't begin for years down the road.

Our family blog is a journal, my baby book for our boys. I can't wait to make it into a book! (Did you know you can do that now?? So exciting!!!). I want to be sure I record all of our crazy adventures so one day, we can look back and laugh.

"Remember that time that we all flew to Dallas. We had 3 seats for our family of 5, and carried on all of our luggage to avoid the checked baggage fee. What were we thinking?"

It is a true story.

Just so I can tell myself "I told you so", later.

So, I have posted this on both blogs.
 
We fly out at 7:05pm. Bedtime. It will be very interesting to say the least! I want to apologize to everyone flying out of RDU this evening in advance. :)

James, Aidan, and I all have our own seats. The babies will sit with James and I as "lap babies". I was hoping the flight would not be booked and maybe we could bring a car seat on. No such luck. I checked last night and the flight is totally booked!

I am just going to bring my sense of humor with me. I can only image how the evening will go! (Do they still serve wine on flights?)

Aidan is so excited!! He has been talking about going on the airplane all week!! I have his backpack stuffed full of some new toys, snacks, crayons, stickers, and a DVD player. Hopefully he will be entertained on the 3 hour flight!

We are staying with our friends and can't wait for our reunion! We have a fun weekend planned with all the kids, and it brings tons of joy to what otherwise would be a very stressful trip!

Monday we meet with two of Landon's surgeons, Dr Fearon and Dr Sacco. I am very anxious and nervous, but ready to start preparing for Landon's surgery next month.

Have a great weekend and HAPPY MOTHERS DAY!

A sign?

As you know we are fight our insurance company. I have heard about "Laurie the Insurance Warrior". She is very successful at fighting insurance companies and we have been trying to decide what to do?

Try to fight first, ourselves. Then if we are denied again, hire her.

OR

Hire her now, and move on. Either way, there are no guarantees.

So I just googled her and went to her site. http://www.theinsurancewarrior.com/home.html

Then I found this.... http://www.theinsurancewarrior.com/images/092009.pdf

Takes my breath away. If this isn't a sign, I don't know what is!

Denied....again

Our insurance has denied us again. I cannot put into words how frustrating that is!

First of all, if you work for an insurance company, I should apologize in advance.

I mean seriously people. What the hell!

Very long story short....

They have denied the Procrit shots, twice now. We are appealing again, and praying they cover some of them. Otherwise we are looking at $1,000 a pop. Landon needs three.

Next they have denied our initial appointment with two of the surgeons. Their reasoning is that we should be going to our in-network doctor who could perform the same surgery. Seriously!?!?!?!

They want us to go to Duke. To the doctor who missed it. The doctor who has done this surgery 3 times in the past 20 years. The doctor whose mistake could have caused my baby boy's brain to stop growing.

Dr Fearon's office is amazing, and are willing to help us fight our insurance. Landon's surgery will go on as scheduled, but we hope to have this resolved before June 29th. I have a list of things I have to gather, tons of research to do, and a very long and detailed appeal letter to type. I feel like I am in college all over again. (Most appeal letters they have sent on behalf of other patients were in the 30 page range!)

I have "met" some wonderful moms on Cranio Kids and one even sent her appeal letter. She fought her insurance and WON! She also went to Dr Fearon and spent every day for a whole year, fighting with her insurance after her son's surgery. Well this wonderful woman has sent me all of her information! I am so thankful as she has just saved me hours and hours of time!

We fly to Dallas on Thursday and meet with the doctors on Monday the 10th. I am very anxious to get there, and finally meet the people who will be fixing my baby's head. Please pray for them, the awful people at the insurance company who have denied us, for sweet Landon and his brothers, and for James and I as we get closer to surgery day. The countdown has begun....59 days.