One Chance to Make a First Impression

Today we had our first laser head scan since the surgery.  They took a scan before the surgery to determine where Josie was starting and to determine her severity which will need to be corrected.  I have discussed in earlier posts that the Orthotic specialist said Josie was the most severe case he has seen in 6 years working with Dr. Jimenez.  Well, today he had a different impression...


So we arrived to the STAR Cranial Center of Excellence for our appointment.

And immediately was taken into the world of cranial kids adorned with their orthosis (helmet).  

The walls were literally lined with these beautiful canvases.

Older siblings with their younger sibling encouraged me of how Noah will be with Josie.

Adorable!

We met Darren, the Cranial Orthosis Specialist and he STAR laser scanned Josie's head just like we did before the surgery.  She was not too happy today.  We think she has started teething.  We eventually got the scan done.  After number crunching, Darren determined that the front to back measurement of Josie's head has improved 10%!  Josh translated this to carpenter language of almost 1/4 inch her head has decreased in measurement from front to back.  This means that the sides of the head are expanding just according to the goal.  This is after the surgery only with minimal swelling!

So, in the beginning, Darren said that Josie was the worst case he had seen in 6 years of working with Dr. Jimenez.  Today he said that he has never seen a patient with such severe measurements make such improvements from the surgery alone by the first follow up visit!!

Now to him who is able to do far more abundantly 

than all that we ask or think, 

according to the power at work within us,

to him be glory in the church and in Christ Jesus 

throughout all generations, forever and ever.  

Amen.

Ephesians 3:20, 21

Josie's Kisses

This morning Josie woke up a bit fussy but nothing that a little breakfast wouldn't take care of.  She then played for 25 minutes in her play saucer.  This is the first time she has wanted to play in it since the surgery.  She was having a great time laughing and cooing.  It was great to see her returning back to her normal self.  Her swelling continues to improve and her eye is almost fully open.

She had a very long nap and then at noon we drove north of San Antonio to the outlet mall.  We looked around a fair bit and lingered a bit longer in the well air conditioned stores.  Josie enjoyed herself as well.

At lunch she decided to give mommy kisses.  Her version of kissing is actually licking.  This is what she has always done.  But she has not done it to me since a few days before the surgery.  She is definitely returning back to her normal self.  Here are a couple of pictures.

I loved it!  The whole side of my face was sopping wet.  She was so precious.  

After a good afternoon of shopping, we drove back to San Antonio.   Josie shopped till she dropped.

Then she woke up.  Notice her swelling has almost resolved.

When she woke up she started playing with her feet.
Trying to introduce her to the toy that she will never lose...

She was thinking about it, but ultimately didn't care about her cute feet today.  Maybe tomorrow.

 And I had to share this picture of the largest pair of boots I've ever seen.  This is at a mall along the highway.  They are huge!

We had another great day with Miss Josie and she continues to recover.  She is eating a bit better today but still not to full bottles yet.  She is resting well.  

O Lord my God, I cried to you for help, 

and you have healed me.

Psalm 30:2

Following Doctor's Orders

When we met with Dr. Jimenez on Wednesday, he told us that after we get Josie home on Friday to take it easy and then on Saturday and Sunday to get her out.  "You put her in a stroller and go to the Riverwalk," he said.  "Really?" we said.  He said it will be time for us all to get out, and the added benefit of Josie's position in the stroller will be that it will help the swelling.

So, as to have Josie be the most compliant patient possible, we loaded everyone up this morning and went to the Riverwalk.  We thought it would be easier to do with a little extra help here as well.

Here are some pictures of when we first walked into the grounds of the Alamo:

Rachel, my sister-in-law, Colby, my brother, Josh and Josie

Thank you, Sarah S for my Razorback diaper bag.  Go Hogs!

Josh and I in front of the Alamo.  When we got there we walked right into the Alamo.  When we left the grounds to walk across the street, the line stretched a block

Sweet Josie in the beginning of the day.  She did remarkably well today.  She did not fuss a lot, took her medicine and bottles regularly.  You will notice by the end of the pictures that her swelling improves.

We love huge old trees and this was a cool one.

Josh and Josie when we had a late lunch.  

Josie and I at the restaurant.  

Notice her swelling is improved and she is able to open her right eye now.  

Today was the first relaxing day we have had in a very long time.  We were able to take a deep breath and enjoy the day.  We continue to be delighted by the progress that Josie has made.  And we are forever thankful to God that He continues to provide mere men with great wisdom and giftedness.

... and I have filled him with the Spirit of God, 

with ability and intelligence, 

with knowledge and all craftsmanship.

Exodus 31: 3

Yesterday when we came back to the hotel from the hospital, this was sitting on the table.  A beautiful arrangement from our dear friend Angie.  Thank you, Angie!  Of course I cried just thinking about the many caring people, many I don't even know, who have been remembering Josie and my family in your prayers.  I just cannot thank you all enough.  The journey is far from over, but we have made nice progress so far. 

Josie has left the building!

Yesterday morning came with Josie lying on my chest.  She did not fancy the bed accommodations in the PICU, so she preferred her mommy all night.  Rest for mommy-little.  Rest for Josie-lots.

While we were getting ready for bed. Thank you, Kristen for my gown!

This is how we started.  Thank you, Nana S for my beautiful blanket!  

But as it turns out, Josie pulled out her IV during this cuddle session and got biohazard material on the blanket.  It washed out with cold water, though.

During the night her swelling increased, more on the right side of her head.  Remember dependent edema I discussed in the earlier post?  This is it.  Also, she had swelling of her right eye, also normal from the dependent edema.

Through the day the eye blackened a bit and so now we have a little pirate girl.  She is a tough one, we must say.  She wears it well!  Thank you, Susan, for my dress!

About 10AM the team rounded and told us that Josie would be able to be discharged and oh the joy we all had!  We are right on target with recovery!  Her blood count dropped a little bit, but still within limits for her.  They were all very pleased.  I met the chief resident who will be taking phone calls from me during the night should I need to discuss anything with him :)

Dr. Jimenez' nurse Wai then entered and went over discharge instructions.  She first told Josh and I to wash our hands.  Then she said "I want to start with dad first".  She took his hand and gently placed it on top of Josie's head and moved it in a back and forth manner.  "See, touching Josie's head does not bother her.  Do not be afraid to touch her head".  She then did the same with my hand.  Josie sat there and did not make a peep.  Wai then went over details how to bathe her head.  We also went over details of what to look for in Josie which could indicate a problem, lethargy (sleeping too much); poor feeding; fever greater than 101; swelling of the incision with drainage and redness; continuous vomiting, etc.  About an hour later Josie's PICU nurse came in to have us sign papers and we were already packed up so we put Josie in her car seat and left the PICU.

Of course I have pics!

She did not resist the car seat at all!  

We have to keep her head covered when we venture out until we get the helmet.

And off we went with all of the nurses bidding good wishes.

We were the first cranio family to leave.  

I know you will find this hard to believe, but I teared up as we took our exiting journey in exactly reverse order as our entrance Thursday morning.  Tears not of sadness, but of pure joy and delight that our feet have made another huge step in this journey.

The blessings have been abundant.  We humbly receive them, knowing we are so unworthy.

Look at the birds of the air: 

they neither sow nor reap nor gather into barns,

and yet your heavenly Father feeds them.

Are you not of more value than they?

Matthew 6: 26

Beautiful feet from Arkansas!

     At 6:30 this morning the nurse stuck her head in and said we had two visitors.  "What?  Who could..." Carmen even mumbled to her on the way to the door that they must have the wrong room.  Nope, it was her brother and sister-in-law all the way from Jonesboro, AR.  They had been planning a surprise visit ever since we had planned to come to San Antonio!

  
     Everybody cried and hugged and then came the gifts: a huge box of cards, notes, and pictures from friends and family which they had gathered from the four corners, and almost as good was two cups of coffee for dad!

 Josie is showing a little swelling this morning but nothing out of the norm.  

She is happy, bouncing and very much herself otherwise.

     They will be here till Sunday so we will get to do a little town painting tomorrow.  

How beautiful on the mountains are the feet of him who brings good news,

who publishes peace, who brings good news of happiness,

who publishes salvation, who says to Zion, "Your God reigns."

Isaiah 52:7

To all of you who wrote letters, thank you isn't enough.  You have touched our hearts with your kind words and prayers.  I am still opening them there are so many!  To those that we have never met, your selflessness and kindness are immense.  You are all our brothers and sisters in Christ, we will meet soon.  I feel like I know all of you already.  

Comic Book Stuff

    One of the many wonderful calls I received today was from a founding partner of Carmen's medical group and elder at our church.  One of those rare people you love, admire, and respect all at once.  He asked with concern about Josie, glad she was doing so well.  Then came the questions you only get from  docs like how much blood loss (less than two table spoons) and etc.  He was familiar with the old way of doing this procedure and was astonished by how much better this new endoscopic method is.  He summed it up brilliantly: "Man, that's just comic book stuff!"  

     The pictures do not lie.  Here is Josie eating 3/4 of her normal volume of formula 6 hours after having significant portions of her skull removed through two, 1 1/2 inch incisions in her scalp.  We are assured by the staff that this is completely normal! And you may not notice as much as us, but her head shape is significantly improved.

     Here she is after a few more hours of good rest loving on her dolly.  

    And back asleep for the night in the arms of her mommy. 

     Comic book stuff indeed!  Only no fiction here, the Author of authors writes the best stories.  He fills them with real heros that he has prepared and shaped.  Thank you, Lord, for providing us with your heroes and fitting us into a truly amazing story that we would never have dared to imagine!

Faith of a Child

This is a post about our Noah.

It was early December 2009 and Josh and I were asking Noah what he wanted for Christmas.  He said that he wanted a brother and a sister.  Time passed and we noticed with his bedtime prayers he would pray that God would give him a brother and a sister.

I realized that Noah was serious about this.  Of course Josh and I had talked about starting to think about expanding the family, but I had Oral Boards coming up.  We decided after the results of the Orals were known, we would begin to move toward that goal.

I talked with Noah about how usually only a brother OR a sister is given and not usually two at one time.  He heard it but continued praying fervently for a brother AND a sister.  Time passed and we found out we were pregnant.  We did not mention it to Noah until after that first ultrasound on July 14, 2010.

We talked to Noah before he went to bed and told him that he was getting two babies.  We didn't know if it was two boys or girls or one of each, but there were two babies in mommy's tummy.

Here are some pictures of that moment:

Our first picture of Josie and Elijah.  

When we found out it was a boy and a girl, he didn't have much reaction.  It was going just as he had prayed and he was not surprised at all.  We named the babies quickly and Josie and Elijah soon became household names and he immediately began growing into his Big Brother role.

He is such a great Big Brother.  Amazing how he can entertain the babies when we are getting bottles ready or while you do something with one and can't tend to the other one at that moment.  He plays with them so well and has captivated their little eyes.  Noah is the best show going on in the Keith household.

  He was so excited when they arrived.  He couldn't believe they were finally here after waiting what seemed to be forever (to me too).  

Today he displayed the best example of a Big Brother.  My mom captured this moment right when the surgery began today.  Noah asking the Creator of his brother and sister to protect Josie through her surgery and to help his baby sister.  And HE did...

Truly I say to you, unless you turn and become like children, 

you will never enter the kingdom of heaven.

Whoever humbles himself like this child is the greatest in the 

kingdom of heaven.

Matthew 18:3, 4

How do you spell perfect?

1103, Wai, Dr. Jimenez' nurse, called from the OR to tell us that the surgery was done and they were closing the incisions.  She said that she would meet us in the waiting room.  About 10 minutes later she came and took us to the family conference room where we would meet the surgeons.

Then Drs. Barone and Jimenez arrived with an envelope in hand which they handed to us.  They sat down with huge smiles.  Dr. Jimenez spoke first, "How do you spell perfect?"  My heard leapt with excitement.  Dr. Barone said all went very well and there were no complications.  She said that Josie had thick bone but other than that no issues at all.  I have no idea where she got that thick skull from...  We shared our heartfelt gratitude to the surgeons and bid them a good rest of the day as they had 2 more babies to do.  Josie was #2 of the day.

What was in the envelope was this:

A lock of Josie's hair which they removed during the surgery.  Her first haircut.  I had no idea her hair was that long.  Thinking back, she didn't have much hair until we started the process of coming to San Antonio.  Dr. Jimenez said that the hair will not grow much while she is wearing the helmet.  I guess that will be cooler for Josie in the Mississippi heat.

After we left the surgeons, Wai took us to the PICU on the 9th floor where we waited in the waiting room another 30 minutes before we were able to see Josie.  During this time we called our family to share the news.  All I could say was "How do you spell perfect".  Not much else would come out except tears of joy.

Soon the nurse came to get us to see Josie.  We are in a room right in front of the nurse's station and have a very nice nurse, Patricia.

Here is her room

Our first look at our baby girl...

The pink fabric is just holding in her pacifier.  Yes, her hair looks red. It has a reddish tint to it, but there is still some iodine from the surgery prep

So good to finally touch that tiny arm!

Of course I kissed her hand too!

She did very well, and had to have one dose of ibuprofen when we got in her room.

And then she opened her eyes and saw us at her bedside.

Looking at her head, I can already tell a difference.  It's like the vice grip has been removed.  Her brain is very happy right now.

I filled out piles of paper work.  Josh ran across the street and got us some Chick-fil-A when we felt like we finally could eat.  She has been resting well and since starting this entry she has had to have one small dose of morphine and Tylenol.  She went back to resting.  The goal is to rest another 2-3 more hours and then we may get to feed her this evening.  Poor baby is hungry!

Josh has gone to lay down and take a nap in the parent room.  I have never seen him this exhausted.  I'm resting in a chair in her room.

Thank you everyone for the prayers and support.  I felt so lifted up today and knew my baby would be ok.

The Lord is my strength and my song; 

he has become my salvation...

Open to me the gates of righteousness, 

that I may enter through them and give thanks to the Lord.

This is the gate of the Lord; the righteous shall enter through it.

I thank you that you have answered me and have become my salvation.

The stone that the builders rejected has become the cornerstone.

This is the Lord's doing; it is marvelous in our eyes.

This is the day that the Lord has made; 

Let us rejoice and be glad in it.

Psalm 118:14-24