Here are a few interactions that are improvements since our first stem cell treatment:
Brady came home from school and was hiding in his room, playing with his iPad under his covers and Daddy said: "Where's Brady" with no response...then Daddy said "Here I am"! and Brady pulled the covers back, grinned, and echoed "Here I am"! This is new because before cells, Brady might have only said "der-e-is" Before cells Brady often would approximate two or three words, but all run together to form one word. This time it was three distinct and CLEAR words! 😀
One day after school when Brady was coming into the house, daddy had Rocky (our dog) on the leash by the door since he had just been outside, and Brady came in and said "Rocky"! Brady usually does not acknowledge Rocky very often. He will play with him by throwing the ball for him. but I think sensory wise Rocky can be a little overwhelming for Brady. Rocky is a "Teddybear" (shih tzu bichon mix) and can get a little hyper sometimes. It was completely out of the norm for Brady to acknowledge him!
Another day after school when Brady was getting off the bus, daddy told him to say good bye to the bus driver. Normally this would mean Brady would keep walking forward towards the house and sort of do a half wave down low behind himself while still walking forward. This time Brady paused, turned, waved, and said "Bye"!
Thursday night we went into town (we live 8 miles from Rochester) to go grocery shopping. When we got home Piper and Hayden noticed a bunny in the back yard. Normally when we would call Brady over to show him the bunny...either he wouldn't be able to find where we were pointing, or he simply just didn't care. Tonight not only did he see the bunny and get excited...he said "Bunny" then he cupped his hands together and said "catch it"! and made a catching motion! It was super cute!
Also when we were out to eat we noticed him paying more attention to the people and the world around him. Being more "present" in our world rather then locked away in his own mind.
Friday morning while waiting for the bus, Brady said "count" then he said "10"...OK, that is different! Then he counted back from 10 to 1! That is totally new! I will have to ask his teacher if that is something they have been working on at school because we never knew he could do that!
Then last Friday afternoon (4/21) we got this e mail from his teacher:
Michelle and Steve,
I wanted to let you know that over the last couple of days, there is a noticeable difference in Brady. The most noticeable is his reactions. Things that have bothered him or agitated him in the past, he is more calmly responding to, if he responds at all. Transitions are smoother and his imaginative play is more shared with staff then to himself.
Just wanted to share some positive observations. There hasn't been a negative observation yet.
Thanks and have a great weekend!
Isn't that awesome!?!?
Is really nice that his teachers are noticing differences in him too! The validation from the school
means that the changes are REAL!! Not just our hopeful biased opinion that things are changing because we so badly want them to!!
Yay stem cells!!!!!!!!!
Here are some negative things we have noticed since our first stem cell treatment:
(Could be good depending on how you look at it)
Brady has been more tired in the morning (pretending to "snore" and says "tired" when we tell him it is time to get up) and seems to want to go to bed earlier then normal. Like actually verbalizing the word "sleep" and wanting to get into his jammies all on his own. That was new, usually he fights to NOT want to get jimmies on.
We were trying to get Brady ready for school the other morning and Brady wanted another piece of toast. Time was a factor and we weren't sure there would be enough time before the bus came to pick him up so daddy tried to move on and get Brady dressed, Brady fought getting dressed and actually tried to strip and get back into his jammies. Stripping is something he normally does not do. We are not sure if this is just because he is more tired or if he is starting to display some independent thought. Like he is expressing what HE wants and what HE wants to do.
To anyone considering stem cells...I know it can be a scary decision. There is a stem cell support group on Facebook and one autism mom was expressing worry, and fear about the decision to take their child for SCT...here is what I posted to her:
My husband and I were facing this exact same struggle only weeks ago before we went to Panama. I kept asking him if we were doing the right thing, right up to the day we left. I was apprehensive even during the week we were getting our infusions. I was so worried that we might be doing something that would make things worse. We already carry the guilt of injecting him with the recommended vaccinations that caused his initial injury. (That fact is not up for debate here, we know with certainty that the vaccines injured him after his first set of shots, our pediatrician even said we should hold off on the rest of his shots until he was older since he had such a severe reaction.)
Here is what my smart husband said; "We can do nothing, and nothing will change. If we do nothing the likelihood of Brady ending up in a group home someday when we are gone or too old to take care of him is 100%. "
"If we do this and he gets worse, the likelihood of him ending up in a group home someday when we are too old to take care of him or once we pass away is 100% "
"If we do this and he gets better, he has the chance of possibly being recovered, independent, and at the very least the quality of HIS life and the lives of all 5 of us (immediate family) will greatly improve. At that point the chance of him ending up in a group home someday?? unknown. "
That was enough for me! On April 10 we took him to Panama and he got 4 infusions for a total of 60 million cells. Since that time we have seen many things we have never seen before! Right now my two sons are downstairs playing together! It brings tears to my eyes! Before cells Brady would hide in his room and only be interested in his iPad, or his movies. We would make multiple attempts every day to try and coax him out of his room to come and be with us. Since we've been home he's voluntarily coming out of his room to play with us and with his siblings! Plus, his verbal attempts, babbling an actual clear words has improved! This is only the beginning! We've only been home since April 16th, we can't wait to see what the next six months will bring! I hope this helps ease your mind even just a little, you are not alone! BIG HUG!!
Disclaimer: The information on this blog is NOT intended to take the place of diagnosis and treatment by a qualified licensed health care provider. Any recommendations are for educational purposes only and are believed to be effective. However, since USE of any information provided herein by others is beyond the control of Michelle Bacon, RN, no expressed or implied guarantee as to the effectiveness of this information can be given nor liability taken.