Ian is home

Kerre, Jack, my Mom and I had a chance to visit as well as have diner with Ian Rodriguez who I posted about earlier.  His parents, Dan and Larkin are awesome.

The procedure I don't understand fully, but his fusion was in the front; called Metopic Craniosynostosis. They reshaped his brow and gave him plent of room to grow.

We are so thankful that Ian made it through and is home.

Read more about his story here.

He had surgery on Wednesday, August 27th.  By the time we had diner with them on Sunday, he was looking great.  This is Ian on the Sunday that we had diner with him.

This is Ian 9 days post op.  It is amazing.

The Contest...

The Contest is in full swing and we though we would show what has been submitted and give some inspirational pictures of Jack...




So far we have (in no particular order)...(if I forgot ya send it in again)

1. "My name is Jack. If you think this is bad, you should see Jill." --DaDoo??
2. "This is my hard, candy coated outter shell."--MaMoo"
3. "I wear this so the aliens can't read my mind."--Uncle Dave
4. "Helmet laws suck."--Brian McDonugh
5. "My other ride is a Harley."--The Vignery Family
6. "Will headbutt for food."--Emily and Chris
7. "I attract the chicks too." --The Trooks



We will give the contest till next week so, submit often. And don't forget about the awesome prize of your picture with Jack. (Kerre will Photoshop if needed.)

I think Jack and I....

...are going to watch some Smokey and the Bandit this weekend...

Jack get's his helmet today!

And just to make it even better we get to go visit Ian in the hospital!!

This is a montage of Jack in all his favorite hats since he won't get to wear them for a while!

I laughed...and...laughed...and...laughed

( ht The Onion)

Ian...

...Rodriguez's surgery is today at 1pm. See earlier post. Please pray for Ian and his family. We will see him on the other side.

Prayer for Protection
Be the eye of God dwelling with you,
The foot of Christ in guidance with you,
The shower of the Spirit pouring on you,
Richly and generously.
God's peace be to you,
Jesus' peace be to you,
Spirit's peace be to you

And to your children,
Oh to you and to your children,

Each day and night
Of your portion in the world.

--collected by Alexander Carmichael

Jack's head smells...

...like Jack's head should smell.

Jackson's head has always been my favorite part of him. Even in the beginning when he had a little egg head! Especially the way it smells. Since his surgery three weeks ago it just hasn't been the same. It smelt like a hospital... and then like glue (derma bond--sp?). But today his head smelt sooooo good. His head looks so good and now smells so good too. Like it should!

Jack gets his helmet on Thursday and I have to say that I have a bit of trepidation. For all the normal reasons, yes. (like will it affect his sleep and balance and how will nursing be...) But also for the fact that I'm losing my baby's head. I cried tonight while I was rocking him because I realized I only have one more night after tonight to kiss the top of his head before bedtime for 6 months. I told Aaron that I feel like we are cutting off an appendage or something.

I can't tell you how many pictures there are of me kissing his head or touching his head with my cheek. I sooth him by kissing the top of his head. I rub his head to help him go to sleep. I feel his head with my cheek to see if he's hot and when I whisper that I love him in his ear. I'm going to miss it so much.

Don't quote me on that...

To me a Christian is either a man who lives in Christ or a phony. You Christians do not appreciate that it is on this - the almost external testimony that you give of God - that we judge you. You ought to radiate Christ. Your faith ought to flow out to us like a river of life. You ought to infect us with a love for him. It is then that God who was impossible becomes possible for the atheist and for those of us whose faith is wavering. We cannot help being struck, upset, and confused by a Christian who is truly Christlike. And we do not forgive him when he fails to be.

~ A 23 year old woman in grad school at the University of Paris (quoted from The Importance of Being Foolish by Brennan Manning)

Is it possible....

...to be too good.

Baseball Team's Pitcher, 9, Ousted for Being Too Good

A Connecticut youth baseball team with a phenomenal 9-year-old pitcher has been disqualified because its team is too good.
The team, Will Power Fitness, has an 8-0 record thanks in large part to pitcher Jericho Scott, the New Haven Register reports. His pitching is so fast and accurate, the Liga Juvenil De Baseball De New Haven asked the team's coach, Wilfred Vidro, to replace him so he wouldn't frighten other players.

“The spirit of the league was community, family, well-being, nurturing," Peter Noble, the league's attorney, told the Register. "It’s an extended family and it’s been disrupted.”
On Saturday, Jericho and his team showed up to the ballfield despite the fact the league canceled the game because they feared an "unhealthy environment" due to parental bickering, Noble told the paper. Jericho's parents, Nicole and Leroy, planned to meet with an attorney on Monday.
The Scotts said the league — which is not affiliated with the Little League — wanted Jericho to play for a stronger team. The parents and the coach claim the reason is because that team is sponsored by a local barbershop where the league's president currently cuts hair, the paper reported.
“If you keep these kids on the field you keep them off the streets,” Leroy Scott told the paper. “I’d rather have him [Jericho] in the midst of this controversy on the field than dealing drugs on a street corner.”

http://www.foxnews.com/story/0,2933,410162,00.html

Dennis Quaid

Here is a link to a story K and I saw on 60 minutes last night.

http://www.cbsnews.com/stories/2008/03/13/60minutes/main3936412.shtml

Jack was given the pedriatric version of Heprin multiple times a day when he was in the hospital. I just happened to ask the nurse all about what she was giving him and (if I remember right) she said that it helped keep his IV lines from cloting.

In Corpus Christi LAST MONTH, this mistake was made in 14 infants; 2 of them died. (see end of CBS story on page 4)

Here is a link to the Quaid foundation which was set up to promote awareness of preventable human medical errors. http://thequaidfoundation.org/index.php?option=com_frontpage&Itemid=1

Please Pray...

A family is leaving from L.A. today to fly here to have the same kind of surgery that Jack had. Their suregon is Dr. Fearon and his operation is on Wednesday.

Here is their website: http://www.caringbridge.org/visit/ianrodriguez

Cranio moms of the world...

...unite. Wednesday we were able to meet 4 other families that had the same type of surgery. It was very nice to meet people that had bee through the same type of thing...

Back....

...up and running. The internet was down at the house for a few days this week, so K has felt very cut off. But we are up now and good to go.

We got the stuff for the helmet worked out. It ended up being the helmet's place issue. I sat on top of our insurance b/c I had heard from so many people that we would get the helmet, but we would have to fight to get it paid for. In hind sight I should have also been in contact with the helmet place to make sure all our ducks were in a row.

I think the issue steamed from several sources. I think the receptions might be new. The director at was on vacation the week before Jack came in. The billing department is in Flordia, wich was being pounded by tropical depression/hurricane Fay.

Just a quick update...

...I will give some more details later.

We were scanned for the helmet yesterday at 1pm. He did great. We have an appointement for next thursday to pick up the helmet. So, in the end all is well and the insurance stuff is resolved.

Yesterday was a BUSY day...

- we had our follow up with Dr. Genecov at 8:45

- at 9:40 he had his 4 mo. round of vaccinations and a wellness exam with Dr. Bergman, his pediatrician

- right after this we went to get fitted for Jack's helmet.

• see Aaron's post a few days ago for the beginning of this story...
  

So anyway, yesterday was a big day for us and as ready as I am to move forward a bit, I'm also a little scared. This helmet thing is one more step into our Cranio world that I'm ready and not at all ready for at the same time. i just have this nervousness in the pit of my stomach and I don't really know why.

We finally got home yesterday at about 2:30...

The first two appointments went well today. Dr. Genecov says Jack looks great!


And his pediatrician was thrilled that he was doing so well.

He has grown an inch and gained 10 oz. since his surgery two weeks ago and the ped was all for more solids! The kids is eating like a horse lately. He is already as long as a lot of 7 month olds (in the 90-95% for his age in height and 10-25% in weight -- tall and thin like daddy -- unfortunately not mommy)!



The first impressions of the helmet group... not getting much better.

They were so unprepared for us. We were told that all of this insurance stuff should of been taken care of before Jack's surgery, but given no reason as to why it hadn't been and really no apologies. We are still being told by them that our insurance is likely not to pay... but every time we talk to insurance it's the exact opposite and even after they talked with the same person we did and were assured that all was well they pretty much refused to go forward...

Our surgeon's office and our pediatrician are talking about the urgency of getting him squared away in his band, but the helmet people are like no big deal if we wait a few more weeks. The conflicting info from all ends is frustrating...

I think what I'm most peeved about is that they seemed to pretty much have us come in just to tell us that they couldn't do anything. To top it off apparently the person who deals with the billing on the helmet is in Florida and has been evacuated because of the hurricane!

They did take a quick scan to fax with paper work to the insurance company and I almost cried. They had Jack's head covered with little stocking thing... Just his face was showing and I got sad about his beautiful little head being in the helmet for so long. I know in the long run it'll be so worth it, but I love my baby's head so much... It's always been my favorite part of him and I'm going to miss kissing it while I rock him...



OK enough of the sentimental stuff... sorry for the long post, just needed to vent a little ... thanks for sticking with me if you made it through this.

Pray for Aaron today as he is continuing to deal with all this yucky insurance and billing stuff (trust me as long as this was you got the short version of what he has been dealing with and looks like there's more to come before we get this figured out).

I've got an idea...

...for a contest.

We would like Jack getting a helmet to be as fun of an experience as possible, so we would like to have a contest.

Best onesie slogan or picture that incorporates Jack wearing the helmet.

So, my examples:

• I "used" to do all of my own stunts.
• Crash Test Dummy
• My real dad is Evel Knievel

The Prize:

• Picture with Jack in his new helmet. (If you don't live close you can send a pic and K said she could "photoshop" ya.)

So, email or comment your entries to aaronlthorne@gmail.com

(K and I are the sole deciders of who wins.)

So, I gotta a call...

...from Kerre as I was pulling into the apartment parking lot. She was telling me that the helmet place just called and they said that the insurance said they would not cover Jacks helmet. I was hacked off.

I have talked to our insurance on average of every other day it seems and had heard a number of times that they would cover the helmet. Plus, one of Dr. Genecov's stipulations on doing a limited cranial vault is that insurance pay for the helmet.

So, when I walked in the door and got the rest of the story from K, I quickly dialed the helmet place. She told me exactly what K had told me; that the helmet was "cosmetic" and therefore would not be covered by insurance.

So, in my "nice voice", which was not very nice I proceeded to tell her that it was ridiculous that we were getting this call at 5:30pm the day before his helmet appointment. We have known about this for a month and a half and I am sure they have know about it longer than a week and this should have been taken care of. After she listened to me rant, she preceded to tell me that the total cost was $2100 and that we could just pay out of pocket and then get reimbursed by insurance and all that we had to have tomorrow at the time of appointment was $600. (How nice of them I am thinking to myself. They will just let me pay for this. Yeah!)

Ok, so now it is 6pm and I still have no answers. A desperation call to Aetna. Maybe some one is there; and low and behold, Donna answers the phone. I give her all of the details and the procedure code the helmet place gave me and I waited wh on hold while jack cooed at his baby einstein. She informed me that the procedure code was no longer valid and that the helmet was covered, becuase of the surgury and he was between 4 and 12 months. Whew!

My question now is, would the person from the helmet place not have told them the exact same thing I did? This have been a very information situation with going through insurance and I. I guess you can't call too many times.

So, it is my job...

...to give Jack his bath at night and I have a confession; I haven't really washed his hair since his surgery. I mean I have got it a bit wet, but not really washed it.

I don't think I am going to get a "Dad of the year award."

I did try tonight though, but it was out of guilt. There is still some dried blood on his head from surgery as well as some of the marker lines from the doctor marking where the incisions would be.

He has doctors appointments on Tuesday and Wednesday next week so I figured that I better get started or the doctors might think we hadn't washed this kid at all .

I thought that ya'll also might want to see an article about Jack's doctor here and here.

You have to love...

...baseball.

I am sitting here watching the rangers and the score is close to what a professional football score could be; 16 to 15.

It is the bottom of the 8th and the Rangers have rallied from being 10 runs down. Pretty incredible.

It has been an interesting week after the surgery. I am at the 11th Annual Transporation Summit this week. This is my 3rd summit and there are so many highs and lows packed into this week.

I'm tired and I think k is even tireder. She is doing great with Jack; very patient; especially with me leaving the house around 6 every morning. He slept much better last night than the night before. We are ready for him to get back into his routine.

Before...

...and after.

We thought that you all might be interested in seeing some before and after pictures of Jack. The change is pretty amazing and a majority of the shaping is supposed to come from the band or "helmet" that he will get in about 2 weeks.

I have been thinking about the amounts of skull that was taken out and I would guess that he has a little more than 50% of his skull left. It is very nerve racking to hold you child and know that there are 5 soft spots on his head. There is the large spot on the top of the skull that was removed and then there were 4 "flaps" cut. They are triangle shape and begin right under his incisions and point down; they are between 1 and 1/2 inches and 2 inches in length.

He was a bit fussy this afternoon. I am guessing he was just uncomfortable. This evening he seems to be himself.

I can't believe...

...that he hasn't missed a beat.

Not even a full day at home as Jack is already settling into his old schedule. He hung out at the house most of the day and wanted to play. He did not nap all that well. Kerre said it was like he did not want to be put down (which I don't blame him.)

We went outside and sat in the swings for almost 45 minutes this evening. He just sat and watched the cars.

He is down. He has had his medicine and will probably want to eat soon, so we are going to bed.

Jack's back...

... HOME! Home again, home again, jiggity jog!!!

In the car, pulling out of the parking lot at Medical City, Aaron and I were a bit in shock that it had been just 51 1/2 hours since we had arrived and then handed off our treasure to have his head cut on... It also hit me today that someone has seen my son's brain! How weird is that???

Not only is Jackson back home, but his personality is back as well. I think that my and Aaron's greatest fear was that the procedure would somehow alter Jackson personality in some way. With all the swelling in his little head and the removal of so much of his skull there was this looming fear that he would just be different.

Well, Jack woke up at 5:40 this morning ready to eat. He then took a walk with daddy around the floor. Not only was he a happy baby at this point but he was ready to be back in control. He was holding his head up, trying to stand, wanting to see everything and everyone. He spent a good majority of his walk flirting with all the nurses!! He's still our little boy. He's been so happy all day other than the few min that he had his IV removed.

We were warned that we may wake up to a much more swollen baby this morning. They say it usually peeks around 48 hours before it starts to go down. We woke to the exact opposite! Almost all of his swelling is gone. Both eyes are open wide. his neck no longer looks like a weight lifter (he was looking like uncle Rodney for a while). And I don't leave nose prints in his forehead when I kiss him anymore!

Dr. Deigo (that's his first name... we can't remember his last name... he's a fellow in Dr. Genecov's office) came by around 8:00, took a look at Jack and asked a few questions... We were released by 9:00 and home before 10:00.

A shout out to our nurses ... Carla, Jen, Jennifer, Suzanne, Kara, Jenna... These ladies were more than a blessing to us. Pray for them as they have new babies to love on now and have very trying jobs at times.

More good news... Jack can go swimming and take baths (his favorite past times) as long as we keep his head fairly dry... Jack also gained 10 oz. while in the hospital over the past two days (how many kids go into the hospital for major surgery and come out gaining weight??)

Praise God. Thanks to all of you who have been so diligently praying for us. The hardest part is over, but please continue to pray as we get through these first few days at home and then in a couple of weeks get Jack's band. And please give God lots of praise for all He has brought us through this week.

We LOVE you all!

Our Baby is...

Beautiful! We just want to let everyone know that the comparisons of our son to Hell Boy and Sloth do not mean that we think any less of how absolutely perfect and gorgeous he is... we just like movies!

Hey You Guys...

...here's some pics of our adventure of late. Jack is doing great today. He woke up for a while and played and laughed and we went for a walk. This helped our hearts a lot.

Jack's whole head is swollen and his right eye is pretty big. Since his head is puffy his ears stick out a bit and with his eye half shut he slightly resembles a really cute version of Sloth from Goonies.(therefore, the "Hey you guys"referrence)

Over all he looks very good. We were able to see Grace, who we mentioned in an earlier post. Her eyes are completely swollen shut. Her mom says she's been very calm despite her frustration of not being able to see. Please include her and her family in your prayers.

We talked to the dr. again and he is pretty sure that we should be heading home late morning tomorrow. Aaron and I are a little scared about handling his care without prefessionals, but know we'll be fine. We love you all and covet your prayers.

Baby Hell Boy...

...has a twin

Jack had several tubes on this right hand which the doctor had secured by taping a small board over them. That was a good idea when he was heavily sedated. But when he started becoming less sedated, it became a problem. When he got mad, he would start swinging it about widely; wacking everything he could reach, which is basically his head and his stomach.

He had a good night. He slept well. He ate well. Nursed well.

Kerre and I had an pretty good night. We slept in a couple of chairs; one reclined and one did not. So we switched back and forth. We got a good nap this afternoon in our new room.

Dr. Genecov came to check in on him today and before he even got to the bed he announced, "Well, ya'll are going home tomorrow." So we have moved out of PICU and into the pediatric unit. The room is bigger and more comfortable.

We have met several families which as been a neat expierence. In the pre-op, Jack became fascimnated with a 9 month redheaded girl. She had a full cranial vault and I spoke to her mom this morning and they are going to be joining us on the new floor here in a bit.

There is also a girl named Grace and she had the same surgery that Jack had about a year ago, She is having to have it redone, but she is also doing very well. From my understanding, she is the only one that Dr. Genecov has done that is having to be redone. They are not sure why the first one did not take.

Text Book Jack...

...such a brave little boy.

He is in his room and doing well. He is in PICU which is great because his nurse only takes care of one other patient.

He fussed some earlier on, they have kept him somewhat sedated just to keep him calm.

About three o'clock Kerre got to hold him, which I think is very brave. (He seems to be hooked up to countless machines.) I put in About a Boy and we all fell asleep. It felt very normal. Kerre also fed him while we watched the movie.

So now he is sleeping and I think my parents are going to watch him while we go get something to eat.

He has had lots of visitors today.
My parents and Kerre's parent's have been here a majority of the day which is just nice to know that they are around the corner.
Uncle Dave, Tia Dalia and "The Boys" (Andrew, Lucas, Nicki)
Aunt Sandi and Joelle and P.J.
Uncle Richard and Aunt Kathy

Jack has also gotten numerous calls, texts, comments and emails. Thanks for all the love. It is great to know that so many of you are standing in the gap.

Jack is...

...a trooper.

He did not wake up until after we got to the hospital. He usually wakes up at 6am and he slept until about 6:15. He usually eats right away when he gets up too and he did not start fussing about eating until 7:15 or 7:20. All the doctors arrived about 7:30 so only 10 minutes of fussy Jack.

Ok, so the big board in the waiting rooms say they ar stiching him up right now. We will let you know.

UPDATE: The doctor just came in and he is done. Said it was a text book case.

It's 5 am...

...and K and I are up and around.

This went great last night. Jack slept. K and I both slept. He work up 1 minute before we were going to wake him up for his last feeding (3am.) We woke up 1 minute before the alarm went off. He is still asleep...so here we go.

The Last Nine hours...

...have felt like an eternity.

The pictures throughout this blog are of family and friends praying over Jack. This was a very special, unique experience as each one in the room (including children as young as 5 and 3) held and passed Jack around from hands to hands and prayed over him. (Joelle age 6 prayed that he would be a strong prophet of God when he got big, Lucas age 7 prayed that he would feel no pain, others prayed that he would forever be an answer to prayer just like he has always been, and for peace for Kerre and I...this was a very precious time for him and us as his parents)

This morning we went to Medical City. We had pre admissions at 9am; Photos 9:15; pre op talk with nurses at 9:30 then blood work right after that that lasted until a little after 10am. My parents went with is to help wrangle Jack and listen to all the info coming at us.

Then we went to Dr. Genecov's office at 11am and met with him as well as a speech pathologist that works in his office. Kerre's parents met us there to meet Dr. Genecov.


After that a patient advocate took us to see where all we would go tomorrow...waiting rooms, pediatriac ICU, surgery, recovery and patient rooms.

Then we ate lunch with my parents and Kerre's parents at Boston Market and were able to get into his pre-op check up with the pediatrician about an hour early, which was great.

Then we went to the house and got a call fairly quickly after that we need to come back to have blood drawn again. It did not look like his blood was clotting quick enough...so, ugh back to the hospital we go...and we got home a little bit before 5pm.

So, read the above paragraphs with much stress and frustration and that will give you a sense of our day.

The day was filled with many surprises also...
--breast milk is considered a clear liquid, so Jack can eat his last meal at 3:30 rather than midnight. Yeah for a happy Jack.
--The bone to be removed from the skull is much larger than we originally thought.
--His stay will most likely be longer than we though. 48 hours is the best case. Looking more like 3 to 5 days.
--Jack has found his feet, which is a bit ahead of schedule. He is also able to find people across the room which is a bit early.
--He is as long as a 6 month old.

So, tomorrow...
--last feeding 3:30am...
--last liquid (i.e. pedialyte) 5:30
--be at the hospital at 6am
--into pre op at 7
--surgery at 7:30
--hopefully we will see him again after surgery and a little recovery by 11:30ish

I suck at goodbyes...

...and I should know this. After leaving all of my friends a few short months ago in Corpus, I had already forgotten how much I suck at good byes. (And this comes on an evening we are preparing for a day of doctors appointments. Kind of an emotional day.)

Tonight I had to say goodbye to the first person to hire me after my unfortunate demise in Corpus. She did much to restore my faith in people... in leadership. She helped me see that true leaders deal with honesty, integrity, transparency and love.

She cared for my wife and loved my son. I will be eternally grateful for the role Beth played in my recovery, my life, my work and my family.

So, all our best to "Aunt Juvie" as I am sure that is what Jack will call her. I hope paths paths cross again soon and I pray the move is uneventful and she finds a new community quickly.

Jack's New Tricks!

So... It took me a week to get the last blog completed and posted... since then Jack as learned some new tricks! Check them out!!!