Saturday, June 28, 2014

Hasta La Vista Mexico

This week has been an amazing adventure. Hayden has been doing remarkably well recovering from his stem cell treatment. He has been alert and energetic. He has been happy and healthy. He has had a noticeably strong appetite as well as visibly rosie cheeks and pink tipped ears. His leg rash went away immediately upon leaving the hospital. His circulation looks good at his feet.  He has not complained about the headache from the spinal injection but he has complained that his right hand hurts. We think this is due to increased sensation in his right hand.

It is too early to tell or expect many benefits from the stem cells. We expect to see the results within the next six months. He will continue to need daily physical therapy.  Like any surgery. Results take time.

Mexico has been good to us. The people here are humble and generous. It is hard to leave this wonderful home and the majesty of the ocean. We have been brave on this journey and had some exciting adventures. We hope that our children will have great memories and strong impressions of being in this foreign country. It is our hope that they will remember the humility of this country and that we all continue to have gratitude for what we have.
Garrett and I are at the tourist market looking for Talavera (authentic Mexican pottery) that we couldn't ever find.  
The power poles hum with electricity.
Hanna getting a personalized name bracelet made.
Walking around the village.  So many good smelling restaurants.  But today we had been cooking & eating at the house.
Grocery shopping was fun when you get Mexican pancake mix, add Mexican vanilla, chop up nuts and chocolate for a waffle and add petite sweet Mexican strawberries (not like the huge genetically modified no flavor US kind) and fresh mango with a little Nutella.

We have done our best to use Spanish phrases every day even though nearly every speaks English.  We try and use Spanish to show a little respect.

Tomorrow for the day we go to Sea World as medical tourists with free tickets donated from the nonprofit Stem Cell Warriors Beating Spina Bifida.  This is thanks to a fellow spina bifida mother Jessica McCullough who started this entire nonprofit for all of us going on this journey. 

Then we are off to Disneyland for the national spina bifida convention. I don't know how they're going to keep claim that is the happiest place on earth after leaving this place.

We are going to miss this Casa de Los Bedlamitos with all of the wonderful accommodations we've had here with our kitchen, laundry, bedrooms and oceanfront dining.

We only hope that we can be as good to others as so many have touched and lifted us on this journey. I hope that we can also be pioneers and lift others along their way.

Buenos Noches & Hasta Mañana.

Thursday, June 26, 2014

Day 4 Stem Cell Surgery Post Op

The past eight hours feel like a week. We are glad to report that we safely returned back to the oasis called Casa De Los Bedlamitos.  To cut to the chase, Hayden did great. Thank you to all of you who generously sponsored Hayden's treatment and for all of you who said so many kind messages and supplication of humble prayers that went out to Hayden.  You have eased our minds and lightened our burdens. 

Today we planned and left early with double the amount of travel time to ensure that we would make it to the hospital on time.  We had it mapped out. We thought we had it all figured out. Then we missed our exit.  We were terribly lost and that is the typical excitement any American tourist has while trying to drive in a foreign county.  
Fortunately,  my cell phone worked and I was able to contact Grace and Abel with Nova Stem Cells and they came to our rescue to find us and to guide us to the hospital. That is the kind of compassion and service you could never expect to get in the US.

At the hospital Grace helped us check in. We had the whole crew. The hospital was very clean and organized and professional. We met with the neurologist, the doctor of internal medicine, the surgeon, and Abel is the biochemist that arranged us altogether.  Hayden was evaluated just like he is at his spina bifida clinic in the US prior to the procedure. He was given sedation which he reacted well to.  And then it was time for this Momma to say goodbye at the OR. My reaction was still the same whether it be in the US or in Mexico saying goodbye to your son to get surgery is terrible.

Scott took the kids across the street to get lunch while Hayden was in surgery.  By the time they were back, Hayden was already out and recovering from sedation.  Hayden always has a hard time recovering from sedation. He is disoriented, cries and vomits.  

At this moment in time the noticeable changes were that he immediately was using his right hand. For those of you that know Hayden he is left-handed and very weak on his right side. There was also noticeable circulation improvement in his feet.  Typically his feet are blue or cold, but after the treatment they were very pink and hot to the touch. From his knees down they were noticeably pink on both legs. A rash started to develop and within a half an hour with an injection of Benadryl the rash subsided.

Abel told us that Hayden actually received stem cells from five donated umbilical cords. He had a lumbar puncture as well as an IV. It is unclear at this time what benefits we may see over the next few months. We will report any negative as well as hopefully many positive effects that we may notice.

Although Hayden was exhausted from vomiting and the entire experience, we knew he was feeling better when he requested chocolate ice cream. Subsequently, we were released.  Abel and Grace graciously guided us back to the highway so that we would not have anymore misguided adventures.  We have had a relaxing evening getting to talk with some family members and making sure Hayden is taking it easy.  Curious George was 1st on the menu, while enjoying the tranquility of the Pacific Ocean.  I know that we will all sleep well tonight and tomorrow brings a new day of possibly some new progressions with Hayden.  
Driving through Rosarito.  

IMI Children's Hospital in Tijuana where we were treated so well.

Statue of President Lincoln in the center of the round about next to the Hospial.  
Hayden Pre-Op
Lunch with Grace, Garrett and Hanna at a local Mexican Food joint.  Great tacos, giving Adrienne and Hayden a break.
Garrett passing time running the hall in front of Hayden's room #3
Abel and Grace of Nova Stem Cells
Happy Hayden with his M&M's
Most of the wonderful medical team.  God bless you all for taking care of our precious Hayden and us.  Hayden did have his thumb up until he realized that wasn't chocolate ice cream.

Day 4 Stem Cell Surgery Pre Op

This morning we've woken up well rested to the sound of the ocean but still we are nervous wrecks. Trusting in the Lord has brought us all the way to Mexico.  We're in a foreign country meeting foreign doctors in a foreign hospital.  We've done the research and learned from the families of the children that have come before. To quote from a much better blogger and parent who lost his son, Mitchell's Journey, "my tears are of a strange variety...I think I'm finally beginning to understand the words of Washington Irving who said, “There is a sacredness in tears....They are the messengers of overwhelming grief, of deep contrition and of unspeakable love.”  

I am not too far evolved from my baby Garrett, full of faith in his parents experiencing his first fearful day on the beach clinging to my leg with trust, yet trembling with fear.  I do have faith that the Lord will deliver us and we will cheerfully praise his name at the conclusion of this experience.

As I look out the greatness of the ocean, it is amazing to see how calm it lies just past the breaking of the waves at the shore.

We have been treated with such kindness here in Mexico. While the poverty is all around us, it is easy to recognize just how blessed we are. As medical tourists, we have met many people the short time we have been here.  Were it not for Hayden, we would not be experiencing many of these remarkable adventures.

Day 3 Mexico Stem Cell Journey: tmrw surgery

Today has been a wonderful day of relaxation. We have all gotten along so very well. We started off the day sleeping in watching the dolphins swim by.  We took sandwiches down to the beach and built sand castles. Garrett was so frightened from the water that he took the longest nap to recover. Later in the day we ventured into Rosarito Mexico.   We ate at a fantastic local restaurant and went grocery shopping at the Mexican Walmart supercenter. The kids are all now asleep. Tomorrow is our journey to Tijuana's children's hospital where Hayden will have to stem cell treatment/surgery at 2pm.  Please do keep him in your prayers.

Wednesday, June 25, 2014

Day 2 Mexico Stem Cell journey

We left Tucson, AZ at 6:30 am for Mexico.  For the most part the journey was pretty nice.  Had a minor hiccup by entering Mexico a little to soon, not the exit we wanted.  Followed a major street just to be put back into the US Border check.  Minor delay of about an hour and a half were everything in the world, so it seemed, was trying to be sold to us from the street vendors.

Made it safely into the right entry point of Tecate, very pretty town, were they do make the beer.  Not that we had any.  Nice restaurants and shops, roads were very nice getting to the Leavitt's residence.  

Arrived around 6:30 p.m. and we are in paradise.  Had a dinner made for us and will restock at the local grocery store tmrw.  We have great company with Ashli & Celise to introduce us around and welcome us!!!

Hayden so happy that we caught up and beat the train!

We are now in the Kingdom of California.  

Massive Sand Dunes. 
Entering Mexico, the 1st time 
The massive boarder wall from taken from inside Mexico.  Adrienne saw a US Border Patrol drone.  Pretty crazy.

Can't wait to sleep with the tranquil sound of the surf just outside the window.

Surgery is scheduled for Thursday.  That means beaching it all day tmrw.

Monday, June 23, 2014

Day 1 Stem Cell Mexico Journey


Our first day journey to Mexico:

This is a journey of faith.  God sent us angels to guide us on an easy road to treatment for Hayden.  The real story starts just before we leave with a call from our fellow SB mom and friend in Houston, Shelly Burr.  Her mother, Carolyn Leavitt,whom we have never met, offered her Baja California beach home for us to stay in that is a half hour from where the hospital is.  I believe these are God's angels on His errand.  What a blessing they are to us making this journey less scarey and to feel safe and comfortable.  Already we see prayers answered.

We didn't know if we would quite make it with Hayden's fall out of his wheelchair on Friday.  Fortunately, there was no ER trip.  He has been healing from just a knot on his head and a slight shiner and we are still on for treatment.

We left Austin at 6:30am and what can we say the kids were wonderful and the drive was long but enjoyable.  Thank goodness for modern technology with DVDs.

We are so fortunate to be able to take this trip for Hayden's Stem Cell treatment, beach fun in Mexico, Dinseyland, Disney California and the 40th National Spina Bifida National Conference.  

How grateful we are to the Burr/Leavitt Families for letting us be their guests at their beach home in Baja, Mexico.  We cannot wait to relax and enjoy the surroundings. Thank you so much for your generosity 
This is an M&MS overload face watching Berenstein Bears.  He gets to eat anything he wants when he gets the the best nutrition with his g-tubie feed.

My most patient travelor riding by the wheelchair by her side.
He was amazingly good as long as he has food in his hands.  Had to vacuum out his seat upon arrival.
Selfie going through New Mexico after 9 hours getting out of Texas.
Come on Arizona.  A beautiful state deserves a better sign.  We made it for our first time to Tuscon for our rest. Hanna was excited to see the "big cactus and coconut trees."  

We are off again in the early morning for another 10 hour journey and crossing the border with our passports and only copies of the kids birth certificates.  Hope we are legit!

Wednesday, June 18, 2014

Stem Cells here we come on the 26th!

I have been mulling over in my mind for weeks what to include in this post. Monday we're leaving for our trip to Nova Cells Institute and taking the children on a 20+ hour drive to San Diego. We are overjoyed with this opportunity. Traveling with our family takes on a completely different meaning than most.  Flying has become too much of a difficulty with our family packing mobility aids and medical equipment along with renting an accessible wheelchair van. I know, traveling with children is never easy but all along our route on our drive we will need to find locations where we can catheterize Hayden every four hours. Gas station restrooms are not the most sterile of environments, so simply looking for a filling station takes on a different and new meaning. 

We are also overwhelmed with the outpouring of love and support that we've been shown. After countless prayers and endless medical research we feel comforted that were doing what is best for Hayden. Although we did not fund raise the full portion of the $16,000 treatment, we feel blessed by all of those who so generously contributed and sponsored as a pioneer to stems cells healing Hayden through gofundme. This stem cell treatment will be the first of several treatments that he will need over the next few years where we believe the benefits will motivate/validate us in fundraising.

We have been accepted by a nonprofit group,Warrior Family Beating Spina They will be able to accept donations on Hayden's behalf that will be tax-deductible. We hope that if any of you know of any companies/individuals that maybe wanting to sponsor Hayden to let them know about this great tax deduction. This nonprofit provides financial assistance and support to families who are in constant need of medical treatments, therapies, medical stays, equipment and anything related to this serious birth defect that is not covered by insurance. They have also sponsored us on a Sea World trip while we are in San Diego. Tax Deductible Donation site for Hayden. Be sure to note that it is for Hayden Trigg.

We have seen so many miracles in the lives of these children that have undergone the stem cell treatment as it has affected each of them differently based on where their body needs healing. I will be doing my best to post and upload and document throughout this process. We have several before videos to serve as an assessment from Hayden's Physical Therapist and Occupational Therapist prior to undergoing the treatment. He has also undergone a complete 2.5 hour urodynamics study at the hospital through his Urologist to measure his bladder pressure as well as his output capacity prior to the stem cell treatment. He will again be receiving full assessments upon our return by his Urologist, Physical Therapist, Occupational Therapist as well as his Neurosurgeon & Dr. of Physical Medicine. We have notified every doctor on his health care team including his Pediatrician so that they may measure the improvements as they may be related to the stem cell treatment not being simply anecdotal.  As we moved into our new house, we do not yet have internet so uploading video is not very easy at the moment.  But stay tuned, you will see some great before and afters I promise to not disappoint!