The not so good, but not so bad day!

Today has been good but we are seeing a little bit of regression.  He is still a happy little boy but the regression we are seeing is the one I would much rather not deal with at all, ever again in my life.  He has started to strip off the clothes again, which leads to the diaper, which leads to poop being spread who knows where.  He came home from school and I went down and he had a poopy diaper, so I changed him and I figured we were good and safe for the night.  I was making dinner and Brandon went down to check on him and came up and asked me if I would like to clean Dylan or clean up the mess.  I chose Dylan, ha ha.  I never actually saw what it looked like but Brandon said it was a good(aka: not good) one and had it on the couch and walls and floor.  After I bathed him, he went down again and I finished cleaning up the kitchen from dinner.  Brandon went down again 20 minutes or so later and this time Dylan was naked but luckily not messy this time.  This may be the beginning of the regression stage, but I guess we will have to wait and see.

The Wrestling Match

This morning Dylan and Desi were standing at the fridge deciding what to have for breakfast.  The problem is Desi had spotted the Pepsi earlier and I was trying to hide it from Dylan because we are trying, unsuccessfully but trying, to decrease our sugar intake around here.  Anyway, I purposely had the half of the fridge shut so that Dylan wouldn't see the Pepsi and went to grab a cup to get him some Apple Juice.  In that minute that I walked away to get the cup, we had a wrestling match break out!

Desi was trying to point out the Pepsi to Dylan but I think she got to close to him for comfort.  For some reason he allows the others to get close to him, but he does not like when his baby sister gets close.  I hear some really sad and heartbreaking cries break out from both of them.  I turned around to find them on the ground and Dylan pretty much has Desi in a headlock.  I thought about being the nice Mom and hurrying and grabbing my phone to take a picture, but the cries were too sad.  I broke them apart and Brielle quickly came and comforted Desi while I comforted Dylan.

 I don't think Dylan liked what he had done and seemed to be really sad about the decision that he made.  Tears just fell from his eyes and he cried his really sad cry.  It really was not a cry like he was hurt but a cry of sadness and the look on his face you could just see how sad he was.  Poor little Des just really was trying to help him out and had no idea why she just got thrown to the ground(pretty carefully though, I never heard a crash).  And incase you are wondering, he spotted the Pepsi and that was his drink for breakfast, that and frozen waffles(actually still frozen) that seems to be his go to meal lately!

ATEC Scores

A lot of parents have mentioned this online test that you can do called the ATEC and so we have done it twice now, once in February before stem cells and then again at the end of September before the second time of stem cells.  I don't remember if I posted about this before, so just for my own sake I wanted to document both of these so we can look back and see the differences.

February 21, 2015 results:

Speech, Language, Communication: 24
Sociability: 24
Sensory/Cognitive Awareness: 19
Health: 19
Overall Total: 86

September 27, 2015 results:

Speech, Language, Communication: 23
Sociability: 20
Sensory/Cognitive Awareness: 21
Health: 15
Overall Total: 79

So it went down, not a lot but down is the direction we want!  The goal is 0 and when you are at 0 that means there are no characteristics present of Autism.  This is a test anyone can do on the internet and it is based on what we, as his parents, see, but we are also around him the most so we should be able to judge accurately.  We try to answer as honest as possible and sometimes that is difficult when you know he should be doing these things but doesn't.  So if it is something he does once in a while we don't give him credit while doing this test.  We want to be honest with ourselves and not try to rank him higher just because he may have said something once in like 3 months or something.  I hope to see these results go lower and we will try again in a couple months and see what it looks like!

Sleep over in Mom and Dad's Room!

We have had a great week at home, but nothing new to report.  He is still saying "Mamama" but I can't decide if it is Mom or More.  From what I have picked up on, he seems to say it when he comes to me but it also seems to come out when he is trying to get you to get more of something.  Either way, I'd call that a word and progress none the less.  He has remained his happy self so we haven't seen a regression as of yet and I hope to just move forward!

We put him in bed last night and then I got in the bath.  I could hear him being himself and running around and laughing in his room.  That is normal for him and varies on how long, but I usually make a point to check on him when it is quite and I am sure he is asleep, just to make sure he is safe!  Last night, after the laughing, I started hearing him cry his sad cry.  I was sitting in the bath wishing I was out so I could go and check on him because it breaks my heart when I hear that particular cry.  After a few minutes, I heard his door open and Brandon talking to him.  Usually Brandon goes down stairs to watch TV but had stayed upstairs this time.  I think the cry got to him too and I heard him bring Dylan into our room to watch Team Umizoomi on the Ipad.

When I came out he was laying in bed with Brandon watching his show and had a big grin.  He actually laid there and watched his show until I could tell he was getting tired and I fixed the pillows so he could lay down instead of kind of sitting up.  Within 10 minutes he was asleep.  So he had his first "sleep over" ever in our bed!  Brandon usually takes him back to his room because he won't settle down and is all over the place, but not last night.  When Dylan woke up in the morning, the first thing he did was reach over to feel for me.  I think he was checking to make sure he was not alone and probably shocked that he actually got to have a "sleepover!"

First Day Home

First things first- Boston's scavenger hunt!  I bought this harness while in Panama because I always think about it and forget about it, but I saw a kid walking with one so we stopped at this store and they had one.  It may come in handy(like right now when they wanted to make sure he followed along on the scavenger hunt ha ha) but it may not.  He likes to randomly fall to the ground if he doesn't want to do something so that may make it hard, but we will test it out!  At the airport we used it and he decided he wanted to crawl a lot.  I felt like I was being watched before that, but "walking your dog/child" you are REALLY being watched, ha ha.

Dylan was quick to get back to his routine of DESTROYING THE HOUSE!  He headed right down stairs and tore the couch apart and took all his food down there.  He made 100 trips up and down the stairs each time finding something new to bring.  Our downstairs literally looked like Christmas morning in a matter of minutes!  But.... I kept hearing "Mamamamama" throughout the day!  When he would say it, it was directed to me!  Usually when he wanted something or wanted me to come with him.  I will take it.

Brandon kept trying to get him to say "Daddy" but he was always greeted with one of Dylan's sweet kisses which he does when he wants something!  As much as it melts my heart when he does this, I know we needed to stop it because he can't just be giving out all sorts of kisses to who knows who when he wants something, ha ha!

Grandpa Jack stopped by and I told Dylan to tell him Hi and so he waved to him.  While I was talking to my Dad Dylan kept wanting me to go get things for him.  So I kept saying can you say Hi Grandpa and at one point he may have muttered the word "Grandpa."  Grandpa Rick and Grandma Lori stopped by after they went to see Trever's house that he just fixed up and sold and Rick said at one point he grabbed his hat and thought he may have said, "my hat."  Of course, we are looking for these words and so we may be hearing what we want, but lets hope this becomes a reality because speech and communication is all I really want, the rest is and will be a added bonus!  I am still trying to keep his school in the dark just so that we do have that unbiased opinion and see if they find any improvement that amazes them not knowing what route we are taking.  So now we are at the waiting game and the roller coaster ride will continue for the next 6-8 months and then we will see where to go from there!

Coming Home

We woke up bright and early Saturday morning to head back home.  I was a little nervous because the flight was 6 hours long and we had just slept through the night, so I wasn't sure if Dylan would get restless or not, but luckily he was pretty good.  He fell asleep for an hour or so, but was entertained with his Team Umizoomi episode of "Shape Bandit" that he has only watched a million in a half times!  He did start to get antsy when they were bringing drinks around so I thought he may have wanted a drink.  I kept telling him we would get a drink but he needed to be patient.  (on a side note:  I had bought a few drinks once we got in the airport so that I would have for this reason.  However, they make you go through a second security check right at  your gate and so you can not take anything over 2 oz on the plane and I had to throw them away.  Last time this happened in Panama, we thought it was extra security because Obama was there, but apparently it is the norm in Panama.)  Once we got the drink he wanted nothing to do with it, so then I was a little nervous, but I remembered I had the Lavender oil and Chris(a lady from my old neighborhood and is a pro at the oil thing) had told me about being on a plane and some kids freaking out.  She put a few drops of this oil on a blanket and handed it to them and said it was a magical blanket and they calmed down.  So I quickly rubbed it on his feet and put a little drop on his seatbelt so that the smell would get to him, and sure enough he calmed down in a minute of two.

We landed, got our stuff, called a taxi, got to our car and was on our way home!  Since we flew out of Vegas, we still had 5 1/2 or so hours of driving.  We made a stop in Cedar City to eat and let Dylan run around and dropped Lori off just before 9 and was home by 9:30.  Dylan had fallen asleep so I just got his jammies on and sent him to bed.  Boston had prepared a Scavenger Hunt for Dylan to do to find the Halloween candy they had kept for him, but I told them they would do that in the morning.  The kids were anxious to see their souvenirs and when I told them I was their souvenir, Boston quickly let me know his disappointment, ha ha.  I gave them some Oreos and they acted excited but I could see the even bigger disappointment and then I gave them the real thing.  It wasn't anything related to Panama but some chocolate egg things that had toys in them(Kinder Eggs) that they had seen on the You Tube videos they have watched and had always wanted them.  When I noticed them in the grocery store, Lori and I decided that was going to be the thing to bring home to them.  They seemed pretty excited about it!

Day 4 and 5

Each visit got a little easier and he started to interact with the staff.  He gave them 5 and would laugh when they took his temperature(under the arm) as if it was tickling him.  He even climbed up in the chair on his own.  When the nurse came out to get him one of the days, he went up to her and grabbed her stethoscope and put it on his heart as if saying, "Here I will just do this and then you don't have to worry about it."

He always knew though when it was the final grab of the hand to find the vein and that is when he started putting up a fight.  However, the fighting was no where near what it was last time.  Lori held him and I held his legs, while 2 Drs. and a nurse focused on the arm where they were doing the infusions.

His labs came back great!  They are now running a couple different tests that they did not do last time.  Dr Barnett thinks they must have started just after we were there because it is standard now.  I wish they would have ran them because 2 of them are ones they typically see in Autistic patients, but Dylan's came back negative or good.  One being the gut inflammation, he does not have any!  Very good thing, but who knows if he had it prior to the first stem cell treatment or if Dylan was ever one of the typical gut kids.  If he was then that has improved and maybe the cells will work in another area this time!  Everything looked great except he is a little low on Iron, which we know is from the way he eats and he was a little dehydrated.  She said most patients are because they have just done lots of traveling so they don't really worry about that one too bad.  So we have some improvements from last time but I just wish we knew how is gut was to begin with!

We haven't seen much change in him however, one of the days as we were on our way to the pool, Lori asked if he wanted to go swimming and we swear he answered with a quick, "Yeah" and then she said something else about swimming and once again we heard the quick, "yeah.  Friday we saw some rain that we had been told we would see all week, but we were in the hotel room so it didn't really matter to us.  I am just glad I didn't go out and buy rain boots like I had thought about buying, ha ha.

Dr Barnett and Dylan

Javier and Dylan