Sunday, June 16, 2013

Living joyfully with NF1

A lot has happened since our last update on Tito Jr.

We are grateful to Make-A-Wish for granting our son Tito a wish. In February we enjoyed a Western Caribbean Cruise aboard the Liberty of the Seas ship with Shrek, Princess Fiona, Alex the Lion, and many more DreamWorks characters.

Tito Jr. has had a stable stretch with neurofibromatosis type 1. Though he lives with the effects of this incurable tumor condition, he lives fearless. Now four years old, Tito makes sad kids laugh by dancing silly or making funny faces. He sits with buddies who are in time out. Though it's tough to hear him sing from his bed at 5:30 a.m., I can only smile.

And I've learned to laugh by accepting life as is. With a load of laundry on one hip and the phone up to my ear talking to specialists, requesting medical records, planning another medical trip, this is my life. And I accept it, this joyful life with my precious son.

Tuesday, July 3, 2012

Tito Jr. appears on billboards and TV

*Notice that the blog is back to being after trying unsuccessfully to rename the blog to*

As you can imagine, our family has kept busy with Little Tito being the 2011-2012 poster child for the Spokane Guilds' School and Neuromuscular Center, the wonderful place where therapists have transformed our son into a little boy who walks, runs, and talks up a storm. Over the past year we have made public appearances at schools, fundraisers, and in a commercial (no longer available for viewing).

The days leading up to the school's major fundraiser, the Kids for Kids Penny Drive, we went as a family into the studio at our local news station. Mark Peterson and the staff at KXLY Channel 4 News put us on the air live to promote the Penny Drive event. From the moment we arrived at 4:45am until 7:00am, the folks at KXLY made our experience in studio relaxing and fun. Thanks also to KHQ Channel 6 News for putting our family on live at the Guilds' School to promote the Penny Drive.

Tito is stable health-wise. We are still waiting to hear from a specialist back east on whether a trip to Boston Children's is in Tito's best interest. In the meantime, we continue to patch his right eye every day to stimulate the vision in his damaged left eye, though the vision in it is non-functional. A trip to Seattle Children's Hospital coming up will hopefully put an end to the worries over a protrusion on Tito's ribcage.

We cherish your ongoing interest in our son's development and life. He is the happiest child we know. With that, we are blessed beyond measure.

Wednesday, February 15, 2012

Still waiting...

Seasons change as Ecclesiastes reminds us. As do blog names. We changed the name of Tito's blog, since he's no longer a baby, from babytito to lifewithtito. Perhaps you've discovered that already. Thanks for being faithful followers.

Life continues to move along with all the joy and wonder a two year old offers. We continue to wait for direction on what to do with his left eye. Whether to keep it and watch it continue to deteriorate, or to pull it. The scar on the cornea looks the worst ever despite ongoing attempts to keep the eye moist. As a result, he hardly uses that eye except when patched.

Speaking of patching, one of Tito's ophthalmologists has us scaling back on the sessions. She doesn't think the patching is doing much to restore vision in the left eye. We patch 2 1/2 hours a day now instead of 4, which I must admit is rather nice. It allows for more of a 'normal' life, whatever normal means.

Age wise, Tito turns three soon. Physically, he continues to thrive in his therapies (physical, occupational, speech, and pool). Verbally, he's quite the negotiator especially when it's sleep time.

We feel grateful for each moment with our son and look forward to what specialists back east will advise. In all of this, I realize that one eye is worth saving, however inconvenient it may be, however many seasons it takes.

Tuesday, October 25, 2011

What is one eye worth: To save or pull?

A recent trip to Seattle Children's for Little Tito brought us peace of mind that he is doing well. Our time there began with a MRI. The scan indicated that the tumor behind the left eye has NOT grown. A sigh of relief. We got to see familiar faces who have cared for our son ever since the initial trip to Seattle Children's in September 2009. We saw the surgeons who performed the brain/skull surgery in April 2010. They continue to monitor a soft spot on Tito's forehead. Hopefully they won't have to close it with surgery. There is nothing to do at the moment.

The geneticist thought Tito looked great. Tito's motor delays have to due with poor coordination from the neurological effects of NF1, but he will catch up in his own time. A sigh of relief. We are staying the course with occupational therapy and physical therapy once a week and speech therapy twice a week. The only thing to do right now, say the geneticist and Tito's therapists, is to get an x-ray of Tito's legs to rule out bone defects since he prefers to tip toe and walk with his feet pointed in.

Moving forward, Tito's team of specialists at Seattle Children's will meet to discuss the future of Tito's left eye. We wait. A specialist at CHOP in Philadelphia wonders whether it is time to pull Tito's left eye and put in a prosthetic. The main goal? To make Tito look more 'normal.' Our family is not ready. Right now, we are taking the wise advise from, of all people, Lace's life-long dentist: "Let Tito be. He's been through enough. Just let him be the little boy he is for awhile." A sigh of relief. We can certainly do that.

Friday, August 12, 2011

A Season for Everything

Sometimes Ecclesiastes 3 comes to mind, that there is a season for everything under the sun. It's a season of joy watching Tito learn to count, sing his ABCs, and even say "No, don't like it" to nearly everything (though after 20 minutes of him screaming it, then it's not so cute).

It's also been a season of fear, wondering whether Tito's left cornea will ever heal. Our wonderful eye doctor is now consulting with a specialist at CHOPS in Philadelphia to see about other options. Is pulling the left eye the best thing? Everything we've tried so far has failed to heal the cornea. Six different contact lenses have fallen out. The one lens that stayed in the longest (one week) did improve the cornea. Ongoing challenges have to do with Tito's inability to feel sensation in the eye and lack of tear production. The eye dries out continually despite endless drops and ointment.

Another trip to Seattle Children's Hospital is approaching, this time for a MRI and to meet with doctors from craniofacial, neurosurgery, and genetics. It will be a big trip to track what the inoperable parts of the tumor are doing in the brain and behind Tito's left eye. A main concern is that Tito's left eye has been bulging more in recent weeks.

It is true that there is a season for everything under the sun. A season can last for months or only a day depending on the circumstances. Enjoying life with our son in the moment is to embrace fully each season as it comes.

Monday, June 6, 2011

Contact Lenses Gone Missing

Hello family and friends. As Little Tito continues to grow and learn new things, he continues to battle a hefty scar on his left cornea. Three attempts to place a contact lens in the eye haven't worked. Each lens has stayed in the eye less than 24 hours. Any day now a fourth lens with a tighter fit will go in. You may be asking yourself, 'How do they get a contact lens into a 2-year old's eye, especially an eye with lids sewn partially shut?' Well, the first time it took place in the OR a few weeks ago. The last two times, thanks to mama's bribing with chocolate Pocky sticks and suckers, Tito has laid still on a reclining chair in Dr. Michel's office. He calls it the 'scary chair' ever since discovering that the chair moves by pressing buttons.

All in all, we are thankful for Tito's progress in his physical therapy and occupational therapy at the Spokane Guilds' School. He has started speech therapy there as well. A vision therapist now comes to the house twice a month. All of these services benefit Tito greatly.

Sunday, May 8, 2011

My Second Mother's Day

It's my second Mother's Day, a perfect time to post an update on our son. He has entered the world of two-year olds, and fortunately for us, 'no' is not his favorite word. Morning, noon, and night, it's 'round-round' (aka: ceiling fan) and 'wheels.' His wheel birthday cake was nearly too cute to eat. Thank goodness it was chocolate or it would still be in the fridge. Little Tito continues to do well despite setbacks with his NF1, especially ongoing concerns with his left eye. He will be back in the OR soon for a sixth eye procedure, this time, to have a contact lens inserted. Once again, our hero, Dr. Michels, will do the honors. Little Tito loves Dr. Michels, and loves the ceiling fan at his office even more. We are hopeful that the contact lens will be the answer to an exposed cornea that keeps drying out, worsening the scar.

Yesterday, I met a woman whose 23 year-old daughter has suffered from a brain tumor most of her life. The daughter has lived with seizures and the need for multiple surgeries off and on. As the woman spoke, I recognized her tears to be the tears of a mother. At the heart of a mother 's tears is the desire never to see her child suffer. Tears reflect reality that at times our children suffer. Learning to be comfortable with tears, whether those of a stranger or my own, makes for a vulnerable yet rewarding life.