Monday, October 6, 2014

Adaptive lunch box for infinity pump

Some mothers and fathers look for creative ways to accessorize their children's G-tube feeding pump. We also look to accessorize all of the mobility devices and make them unique in our own.

Here is a picture of how we have adapted a lunch box to fit the infinity pump as well as a backpack to put on the back of the wheelchair.

Sunday, August 31, 2014

Two Months Post Stem Cell Treatment

We have been hesitant to post this blog as we have felt great responsibility to those who will be reading it and looking to it for advice as weather or not to get their own stem cell treatment.  We have wanted to post results that were noted by other medical professionals and not just from us as parents with anecdotal evidence.  However, much of what we note is anecdotal evidence as there are not currently any scientific experiments to empirically test the risks or benefits of stem cells on children with Spina Bifida or the host of other diagnosis that Hayden has. You can read about and talk to others families/individuals with multiple similar experiences as ours.  To date, we have not yet communicated with anyone that has had a bad outcome after having undergone stem cell treatment.  Please see the disclaimer that we have noted below that is also referenced on the Nova Cells Institute web page.
Since Hayden's Stem Cell Treatment in Mexico at the end of June, we have seen a lot of progress with him as we keep an open mind to what we are observing.  Grace and Abel of Nova Cells have been wonderful to continue and to carefully follow up with us as to the progress of Hayden.  The staff and facilities were fantastic.  We were embraced by the culture and the staff.  They have helped us to break through our fears and start the stem cell treatment process.
Testing out sensory issues one day post op and using right hand to play in the sand.

As natural skeptics and analytical people, we have had some doubts as to correlating what we were observing was directly the result of the stem cells or if it were natural developmental progression.  With typically developing children, you expect natural progression.  With Hayden, progression is earned.  Upon our return and thorough testing, our pediatric neuropsycologist has stated that Hayden is to be treated similarly to a person with traumatic brain injury and to seek intensive therapy.  The whole written report is to be summarized and updated at a later date as it takes 3 weeks to get the final report.  He also has similar neurologic conditions to someone that suffers from ALS (like those ice bucket challenges) Symptoms often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.

We did not hope for or believe that the stem cell treatment would work as a wide sweeping miracle cure but expect to note and document improvement for 4-6 months post treatment as it can take a while for the stem cells to complete this single treatment of 5 blood type matched & donated umbilical cords to do their work in his system.
lumbar puncture where they administer the stem cells
So far, Scott has kept a record of the progress since his treatment with the various areas of function namely cognition, improved balance and increased motor skills from the dates below:

6/29-7/4:  One week post operation:  Trip to Sea World and Disneyland for national Spina Bifida Association convention.  He has increased daily endurance and stamina.  Click here to see the family updated picture blog on this trip: Texas Triggs blog

7/15:  Hayden has most noticeably begun to initiate a greater dialog speaking and initiating conversation, wants and communicating humor.  Previously, Hayden would respond with prompting to someone if his was spoken to.  Now he is initiating asking for food, to play his iPad and telling us when he is tired.  The biggest observation is that he speaking in complete sentences, which we have never consistently seen before.  His pitch and tone in his voice is stronger and clearer to understand.  Every therapist, PT, OT and nurse has noticed that is the most visible improvement.  Stem cell therapy for Ataxia (no development of the cerebellum part of the brain) can bring improvements in speech, swallowing and mental alertness all of which are the most noticeable at this point.  He has noted measured improvement from his OT with balance and protective reflexes which were not present prior to the treatment.

You Tube Channel where I have linked several videos of Hayden's evaluations before and after.


protective reflexes and balance noticeably weaker

Timid driving before stem cells we need an after video to show you just how confident he is now and capable of going for a long distance.

The three that I have posted on this blog are of his reflexes and his marked increase in speech & increased fine motor skills 2 weeks post stem cell treatment.


Hayden also attended a week long cowboy camp at the Red Arena that provides hippotherapy (horse physical therapy).  He loves the horses and got to ride his favorite Fiord horse, Hans, for the week.  He loved every minute of it and we loved seeing his happiness shine through.
Horse Camp with big sister Hanna & friends
Cowboy Hayden in the Red Arena round up rodeo & fundraiser

7/17:  Hayden has increased body awareness.  He is noticing and describes where his pain is whether it is in be in his back, arms, legs etc.  It is a bit of a mixed blessing to get sensation where you haven't had much before.  He is communicating getting sensation expressed as pain in his lower legs (below his knees) and right hand (helper hand as he is left hand dominate).  The nerve awakening creates pain/discomfort.  Hayden complains about this when he does his standing therapy.  This is a mainly a great thing as well as we are seeing increased circulation in his feet.  Hayden is also able to slightly move his toes and has some reflexes as he jerked his foot back for the first time clipping his toenails.

7/20: Hayden did great during our 1st walk in our new neighborhood.  He was able to drive his power chair almost completely unassisted.  Most of the time he just needed a little encouragement.  This is a wonderful milestone as it has not been easy for him.  Cognitively he seems to be picking it up easier and is not discouraged.  He has to use fine motor skills to use the joystick to drive the chair that can that can go pretty fast.  He has struggled with reflexes and balance so coordinating when to start and stop the chair has been difficult.

We took his power chair the last weekend in July to the Texas Spina Bifida Day at Morgans Wonderland and he did great.  He is able to go fast and he shouted, "I feel the wind in my hair!" He has learned to manipulate the chair down and up higher so he can see over people and grab things he could not before.  Seeing Hayden gain even more independence is our goal and we will continue to strive for independence.

7/22:  Continued increased vocabulary.  Hayden is engaging in conversation, rather than just being a "spectator" he is contributing to the conversation.  He is using new words, that absolutely crack us up.  
We were in our new pool the other day and Hanna splashed him with water and he said "that is just plain rude ".  Since he has noticeably increased sensation in his right hand, he continues saying it hurts and asks for it to be massaged.  Hayden's response is, "oh that feels great".  He also did this two days after his treatment.  Tonight he said that when I was cathing him that it hurts.  Normally I would react differently to this, but I know he has increase sensation and can feel the cath.  This also makes it more difficult to cath as his sphincter is reacting and making it harder to pass.  He tells me to be extra careful.  Now this is a normal part of his routine, but once again it is good to know of the increased sensation he is feeling throughout his body.
He has completely outgrown his RGOs on the left that are not a year old, HKAFOs from when he was 3 and his 1 year AFOs.  His growth has been pretty slow especially in the feet, but with his g-tube and tethered cord surgery he has had a growth spurt.

Increased appetite:  He is again willing to try reintroducing new food to smell and taste.  He asks for food regularly and his blended tube feeding is more complex with a large variety of ingredients.

Takes verbal directions:  His therapists have noticed a gain in spacial awareness.  I can give Hayden a chore and he will listen, initiate and follow through.

Everyday we see him getting stronger using his manual wheelchair.  I was observing him the other day and you could see his focus and his arms working extra hard to propel him as fast as he could.  His cognitive awareness has increased as he seems more aware of his surroundings.

I know that our Lord and Savior Jesus Christ has blessed our family through this entire experience.  How blessed we have have been by the Lord and guided to the good doctors and Nova team as well to provide this treatment for him.  I know with continuted therapy and encouragement that Hayden will be able to accomplish so much in his life.  What a blessing this experience has been and will continue to be as we see wonderful progress with Hayden.

With the improvement we have seen, we know that he could benefit from repeated treatments and continued daily therapy.  Most importantly we have noted NO NEGATIVE side effects from the surgery or treatment other than the earlier noted effects from coming out of anesthesia (his typical anesthesia nausia/vomiting).  We thank you with our deepest gratitude for those of you who financially supported us on this pioneering stem cell journey.  We believe that he will need more treatments that come with a large expense but putting a price on cognitive and motor function and increased quality of life is priceless.  If you know of any corporate donors that may want to sponsor his next stem cell treatment please show them this wonderful pioneer.

*Spina Bifida clinic is in September and we hope to see if the doctors notice any marked improvement in the imaging and overall

DISCLAIMER: The use of stem cells or stem cell rich tissues as well as the mobilization of stem cells by any means, e.g., pharmaceutical, mechanical or herbal-nutrient is not FDA approved to combat aging or to prevent, treat, cure or mitigate any disease or medical condition mentioned, cited or described in any document or article on this website. This website and the information featured, showcased or otherwise appearing on it is not to be used as a substitute for medical advice, diagnosis or treatment of any health condition or problem. Those who visit this web site should not rely on information provided on it for their own health problems. Any questions regarding your own health should be addressed to your physician or other duly licensed healthcare provider. This website makes no guarantees, warranties or express or implied representations whatsoever with regard to the accuracy, completeness, timeliness, comparative or controversial nature, or usefulness of any information contained or referenced on this Web site. This website and its owners and operators do not assume any risk whatsoever for your use of this website or the information posted herein. Health-related information and opinions change frequently and therefore information contained on this Website may be outdated, incomplete or incorrect. All statements made about products, drugs and such on this website have not been evaluated by the Food and Drug Administration (FDA). In addition, any testimonials appearing on this website are based on the experiences of a few people and you are not likely to have similar results. Use of this Website does not create an expressed or implied professional relationship.

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 MaƱana.

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.