Testing out sensory issues one day post op and using right hand to play in the sand.
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
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.
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.
Cowboy Hayden in the Red Arena round up rodeo & fundraiser
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
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