Monday, December 27, 2010

More Eye Surgery Ahead, and Another CT Scan

Hello fans of Little Tito, and Merry Christmas! The latest on our wonderful son is that a corneal neurotrophic ulcer ('shield' ulcer) has formed on the left cornea, the very one that we hope will still heal. The around-the-clock task of putting steroid drops, antibiotic ointment, and many other forms of gels and ointments has not prevented the cornea from deteriorating further. This week, with his eye doctors here in town, Tito Jr. will have the left eye sewn shut even further. It is already closed 2/3 from a surgical procedure back in September. We are very confident that his eye doctors here in Spokane, Dr. Shea and Dr. Michels, are doing everything they can to help Tito's eye.

The fact remains that Tito Jr. still does not blink and produce tears in the left eye. Further coverage is the goal with this week's surgery: sewing shut the lids at the inside corner near the nose and opening up the outer side a bit. The small opening will allow us to continue patching Tito's good eye. We put splints on his arms, tape open the closed left lids, and cover the right eye, the longest 4 hours of each day. Hopefully this will bring back some vision in the left eye.

Soon, we return to Seattle Children's Hospital. Another CT scan is in order, followed by appointments with the craniofacial team. It is a routine check to see how the skull is healing up post-surgery. Every 6 months now, Tito will have either a CT scan or MRI to track his progress and to check on what the inoperable parts of the tumor are doing.

Enough of the medical news. Tito is blooming, thanks in part to his wonderful therapists at the Guild's School. He is walking now, though still prefers to crawl if he wants to get to a toy in haste. With all the new Christmas presents, crawling has taken priority!

Soon, Tito will start group therapy twice a week at the Guild's School. We will miss his physical and occupational therapists that have worked with him on an individual basis, but are excited that Tito will get to meet and play with his peers in a group setting.

Tuesday, November 9, 2010

What is Faith – A Sermon in Verse

God,
Has a story to tell. And I am aware that I live in the middle of it. It started long ago,
when the universe was forged from God’s voice, as God said,
“Light.”

I was not there, but now I am. God has a story to tell.
And God continued by the cooling of a small rock and the bringing
forth life on our planet. God the made humanity, Adam and Eve.
Sin followed with bloody rocks and dead brothers. I am aware of this sin, my sin
of saying dark with our actions, with our being and with our stories apart from God. We ate
this fruit and continue eating this fruit of violence. We forgot the story.

God answered by continuing to tell
his love story through the calling Abraham out of ancient city and into the wilderness. God made him promises for the future of his children and all humanity.
God continued by leading Abraham’s great grandchildren’s grandchildren’s
children out of slavery and into freedom, into their own place,
into a home to call their own, a home of milk, honey, grapes and abundance and
the promise of love. I am aware that I live in the middle of this story of freedom

And Abraham’s children thrived and forgot the story of God in their daily living.
Then God entered the story himself in the flesh. Jesus, who came and lived
with us in our daily struggles, teaching the meaning of love and forgiveness,
only to be abandoned by his friends, family and those he gave life to,
and died horribly alone on a
cross.

My God, my God why have we forsaken you.

I am aware that I live in the middle of story of the cross.
But the cross was not the end, as he sprung back to life with more
promises and love. He dulled death’s thorns with an light filled empty tomb we wanted
to bury God in. God was not done with us and continued telling hs love story. He then gave his people, us, a gift to give us life and more promises of his return. God’s story continued.

Go out and tell others about Jesus and Jesus will be with you, he said as he left.
And the story continues. Jesus continues to be with us. He gave us the end
of his story of love. St. Paul went out to our ancestors and gave them the new words, gave them life by including them in God’s story. We continue to live in the middle
of God’s story even down to today. Luther reminded us of the story when forget to tell it.

You ask what is faith. Faith is being aware that we are living in the middle
of God’s story. Like when my one year old had to have brain surgery and all
we, his parents, had to answer was silence, prayer and God’s story. God came into
the middle of our story

even as we live in the middle of his. And when our son that night, plumb and bruised
like a blueberry from the surgeon’s knife, answered our kissing sound with his own
and sound of lip smacking like kisses, we praised God for bringing light and
for being with us in the middle of his story and our story. God did not forsaken us.
The story continued. Even as some
don’t know the story. We have a lot of telling to do.

God,
has a story to tell. We live in the bible between the end of Jude
and the beginning of Revelation. We live in the middle of God’s story.
Faith is learning to listen to God’s story. Knowing the truth
that my life is beyond me but not beyond his love. We live in the middle, even
as we know the end. Our lives blossom with God’s story.

And here is the mystery. He is with us now, telling the story in the middle
of your life. He is here, now, in the middle of you story. Oh God,
Let us be together and listen to you unfolding story. Let us
pick up in the middle of the story.
Amen.

Saturday, October 30, 2010

Okay, a new post.

We have been bad. We have been very, very bad. We have not updated this blog and many people are wanting to know how Tito is doing. Below is the latest video Papi edited. Papi feels so behind getting the videos up.

Tito is doing well. He has been healing well. He is also getting ready to walk. The major upset is that we have had to patch his good eye for three hours a day. Tito hates it. Moma hates it. Papi hates it. Sometimes, we have to do what we hate to do in order to love. Maybe that's the definition of love: doing what is best, even when it's a terribly non-fun thing to do. Enjoy the video, and tell us what you think.

Wednesday, September 15, 2010

Tito has come along way

Another mother, with a 16 year old daughter with NF1, told me that the future will hold many interesting moments as Tito lives with NF1. That was back in April, the day that Tito was discharged after his brain/skull surgery. At that time, little did we know that Tito would have two more surgeries in less than five months--both for his left eye. I keep returning to that mother's words.

The most recent surgery was last Thursday, September 9. An eyelid plastic surgeon sewed Tito's eyelids shut half-way. Tito's cornea still has a ways to go for healing. Back in June, at Seattle Children's, Tito had a silicon/thread device sewed to his left lids to heal the cornea. This allowed us to open and close the eye as needed. After three months, the cornea was looking really good--less scarred and cloudy. A couple of weeks ago, the lids looked infected, and the silicon device was removed. Within a week, the cornea had deteriorated with scarring again. So back to the operating room he went, very happily I might add, thanks to the Versed.

We are starting over with trying to heal the cornea. We are hopeful that this latest procedure, though long-term, will be the right fix. Tito is in good hands with Dr. Michels in Spokane. We are grateful for all medical personnel who have helped Tito.

Due to Lace's book about to be published through Brill, in time for a November conference in Atlanta, blogging has taken a back seat. Read Lace's latest posts on topics ranging from her book to being a mom and managing one's own anger at http://theologicalmoments.blogspot.com

Saturday, June 19, 2010

Futher on joy with my Family

Joy comes in the middle of living and most of the time we ignore it. With baby Tito's heath issues, many people start to define Tito by his NF-1. Understandable, though it misses so much about his life. Below is his joy in playing with a friend's dog.


Friday, June 18, 2010

Today is our Wedding Anniversary

Today, Lace and I have reached half of our first decade. Through of our life together, the problems with Tito's health, the struggles with career, what I feel is simple gratitude. God is good.

Sunday, May 23, 2010

Post-surgery update

The baby continues to recover very well from his surgery back on April 13th. This Tuesday marks the sixth week since his brain-skull surgery. So far, Tito has had two visits back to Seattle Children's for follow-up care. The craniofacial surgeon is pleased with how Tito is doing. Tito is on track as far as the healing of the head is concerned, which will take 1-2 years to heal completely.

The left eye continues to have problems. As a result, we will find out this Wednesday morning, May 26th, whether Tito's eye doctor in Spokane will recommend sowing Tito's eyelids shut on the left side. The cornea has drying damage. The cloud has worsened over the cornea, which has become vascular as blood vessels try to heal the damage.

Also, we return to Seattle Children's soon for a follow-up visit with the neurosurgeon as well as another MRI of Tito's brain. The neurosurgeon and Tumor Board will start monitoring the portion of tumor that remains on the left side. The doctors were unable to remove it completely since it involves too much of the dura. The tumor is a benign neurofibroma related to the baby's NF1. We are aware that these neurofibromas tend to grow back, though the doctors leave them alone unless they start to cause problems again.

Thank you for ongoing prayers and support as worries sometimes loom.

Saturday, May 8, 2010

Ode to my Mama

Ode to my Mama
by Ernesto Tinajero II, (baby Tito) for my mama’s second Mother’s day

 (Okay, Papi help a little to write the poem)



I learned the meaning
Of mama before I could
Say the word. You sing to me
The hymns you compose for me.
Your song sings
Of love, God and me,
Your baby. You answer

my calls of the night,
of the terrors of time, space
and hunger with food
and the warmth
of your lap. Mama,

the word taste good
as I struggle to speak.
It is best to learn
the meaning of some
words before being
able to say them.

Words like love,
God and Mama.

Oh, Mama, mama, mama

Saturday, April 24, 2010

Home at Last

We are now home and are taking care of Tito as he heals. His eye is still very red and it is discharging what looks like blood. At the sight of this, we became worried, but were reassured that it is normal. It is normal to shed bloody tears after what he gone through, it is a metaphor for the struggles that Tito has had to endure.

He is also very happy. Coming home to the familiar after his stay at the hospital brought him a deep joy. He squealed at the site of his crib, at his bouncer, at sight and smells of home. Remarkable.

The grandeur of life is in the living. In the act of taking delight in the familiar and even in shedding of tears of blood.

Tito has brought of us joy as well even in the middle of his medical trials. His love never wavered. I wonder if that is why Jesus called us to be like children.

The masters of living are those people where living means being a beginner, seeing all as if seeing it for the first time. 

Friday, April 16, 2010

Still in ICU

Time is a funny thing. Some days drag on. Some days zip by. The baby is on day five in the ICU. His lumbar drain was removed this morning. He still has the drain in his head. Right now he is asleep after fighting a long day of pain. He was taken off pain meds for awhile. He is back on them now.

So what happened Tuesday? We checked into surgery at 6:45am. Big Tito and I had an hour to help prep Tito for his surgery. This included wiping him down with a special chemical, getting him into a gown, and distracting him with toys. At 8:00am prompt, the anesthesiologists wisked Tito out of my arms and disappeared. We were taken another direction and given a pager. At 9:15am, we received a page that the surgery was in progress. Every two hours we received updates. It took several hours for the surgical team to remove a large tumor from behind Tito's left eye. Unfortunately, the tumor originated on one of the nerves of the eye. The "3rd nerve" has been compromised. The baby seems to see. He just cannot move the eye. Both the eye and pupil remain fixed. Time will tell whether this damage will reverse itself.

The tumor could not be removed completely because it involves too much of the dura (the lining between brain and skull). The doctors removed as much of the tumor as they could. Then they grafted some soft tissue from another part of his head to seal the hole in the dura that was removed along with the tumor.

The rest of the 7 hour surgery involved a bone graft reinforced with titanium mesh to seal off the brain from the eye socket. The baby has NF 1 and was born with a portion of his skull bone missing on the left wing.

As of right now, the baby is doing well. I got to hold him today for a long time. He liked that. Once a room becomes available out on the floor, Tito will move.

We are comforted by everyone's support, prayers, and visits.

Wednesday, April 14, 2010

It is strange to say that the Doctor is adding the bones back to your baby's skull. We have had the surgery that we have been waiting for so long for. Tito is doing well, but there is still a question if he will have sight in his left eye. It took about 7 hours, like the staff had warned us. Tito is doing well in Intensive Care and his nurses have been wonderful. It is tough to wait, pray, and be present, but that is all we can do. 

The details of the operation: We started early in the morning, 6:45am, with Tito happy as a bee in a valley of columbines. His parents full of dread. The staff was great and compassionate. Lace washed with wipes of a special cleansing. Then they took him to be gassed and have the IV set. We then waited. His grandmother, my mom, was with us. His grandfather, Lace's father was with us. They updated us when the operation started, and we waited. Then Pastor James showed up. Then we waited. We talked about everything and nothing. They found a tumor behind the eye. We worried. We waited. Lace and I went back to the Ronald McDonald House and to run some errands. As fate would have it, we got paged that the operation was done. We rushed back to meet with his doctors. Then we waited. From the time we handed our son over to the anesthesiologists, 7 1/2 hours had passed. We got the report from the craniofacial plastic surgeon, Dr. Gruss. He said that it went as planned. The neurosurgeon, Dr. Ellenbogen, gave us his report on the surgery. The main worry is Tito's left eye because the pupil remains dilated and unresponsive to light. He might be blind in the eye. We will not know for a few more days. So we are stll playing the waiting game. We are still so glad for the care he has received.

Below is Daniel's story. It was a surgery by the same team that helped Tito. I am so grateful.

Wednesday, February 24, 2010

News on Baby's MRI of Spine

Anticipation always has an element of fear, and hope. We heard back from Seattle Children's concerning little Tito's recent MRI of the spine. Everything looks great--no tumors! The nurse practitioner from neurosurgery did say there is a tumor on the left orbit of the baby's eye, and had us coming back to Seattle this week to meet with the Tumor Board. We told her that we've been through all this before concerning a possible tumor, and that we were finally reassured of no tumors by the craniofacial surgeon. So where things stand right now is that if any tumors are present, they will be removed in surgery.


In the meantime, our soon-to-be 11 month old son enjoys his army crawls, and even more so his Ritz crackers.

Monday, February 15, 2010

Update from last week's trip to Seattle Children's

We had baby Tito back to Seattle Children's last week. Again, nothing but praise for this place. If there is any pocket of heaven on earth, you can find it at Seattle Children's.

The baby had a MRI of his spinal cord to check for tumors related to NF1. The results have yet to come back to us. One of the baby's surgeons ordered the MRI as part of the surgical plan set for this spring. If tumors are present, it would change the way the baby is intubated (gets air) during the surgery.

The visit to the Genetics Clinic at Seattle Children's, after the MRI, was informative. There is no way of determining how the NF1 will play out in Tito's life. The good thing is that his numerous brown spots will never turn malignant.

Another update will be given once we here the results from last week's MRI. We move forward towards surgery, trusting in God who goes before us in all things.

Friday, January 8, 2010

Third Trip To Seattle Children's Complete

This past week, we were back at Seattle Children's. Baby Tito had a fresh CT of the head. It was pretty cool how they put the baby to sleep. Rather than poking him several times to set an IV for drugs, they put a gas mask on him. It took only 20 seconds to put him to sleep. Granted it was tough holding the baby down while he fought the two masks, yet it beat the alternative of what happened at the hospital in Spokane with the baby's MRI and CT where we had to hold down the baby as he screamed from getting poked over and over in the dark.

After a CT in the morning at Seattle Children's, we were back in the Craniofacial Clinic all afternoon. We met with the craniofacial plastic surgeon and a neurosurgeon who will operate on the baby in the spring. Both doctors were impressive in knowledge and confidence. We have hope that they can help the baby. It appears the baby was born with a portion of his sphenoid bone missing on the left side of the head behind the eye. The cavity has filled with the brain and a large pocket of fluid. The goal of the surgery is to rid the brain of this fluid. The other task is to create a barrier between the brain and the eye socket with titanium mesh. This will allow the left eye to recess back into the face where it belongs.

So what are the next steps? We are scheduled back at Seattle Children's soon. The neurosurgeon has ordered an MRI of the baby's spine to check for spinal tumors associated with NF 1. If any tumors are present, then this complication will more than likely
change the surgical plan.

Miracles and blessings abound. Once again, we feel everyone's support and love. We take each step as it comes, knowing that God is faithful and steadfast in love. We have experienced God's love through you. Thanks also to our church's recent fundraiser. Holy Trinity Lutheran Church raised over $1,500 at a spaghetti feed. Part of this money came from a match by Thrivent Financial. The MOPS group at Lace's parent's church, Hayden Lake Friends Church, has given $750. Thanks to the many other individuals who have given monetary gifts for our baby's medical expenses. The other good news is that for the next year, Seattle Children's Hospital is waving our 20% owed after insurance!

Saturday, January 2, 2010

Eye Trouble

A recent trip to the baby's ophthalmologist revealed laziness starting in the left protruding eye. The condition is called amblyopia. We have to patch the good eye now every day until the baby's surgery in the spring. This is to prevent vision loss. Thank goodness the patching sessions are only 30 minutes. It is nearly impossible to keep the baby from rubbing the eye patches off. All kinds of funky stickers are available to decorate the patches.

After the brain and eye-socket/skull surgery in the spring, the baby may have to have a secondary surgery on the eye muscles of the left eye. These muscles are atrophying. The baby can no longer look up with the left eye.

Soon we will be back at Seattle Children's. The purpose of this third visit is to get a fresh CT scan of the brain. Then we will meet the surgical team and draw up the surgical plan.

The baby continues to grow happy and strong. What a delight our son is.