Pointing(baby steps that is what makes us happy around here)

This is small but something I wanted to document.  Dylan had been watching shows(Team Umizoomi and Paw Patrol) all day.  He lead me to me and Brandon's room and gave me the remote that controls Netflix.  I went to grab the other one and turn on his normal shows.  He grabbed that and put it down and gave me the other remote again.  I had no idea what he would want to watch but started scrolling through the shows.  All of a sudden his finger shot up, full on pointing finger and not full hand point, and he pointed to Super Why!  I was so excited to see the actual pointing finger showing me what he wanted!

Potty Training!

Christmas has come and gone and we are almost to a new year!  I decided since this would be the longest break and would have Dylan home for 2 weeks that I would attempt potty training!  Potty Training in itself is not the best time as a parent, but potty training a non verbal child is really not  fun at all!  I started the Monday before Christmas and just jumped in.  At first I had a pull up on him but he seemed to just pee in that so I decided half way through the day to just put underwear on.  Best but worst decision, because he held his bladder better but when it came night time to put the diaper on, he wanted nothing to do with it.  Now, not that I intended to go back to diapers, we are absolutely going to have to train him because he will not wear a diaper!  We do put a pull up on when we drive somewhere, just in case.

I started out taking him to the bathroom ever 15 minutes or so and the first day I had to change his underwear at least 7 times.  We are getting better though.  I still don't think he it is "clicking" on when he needs to go for himself, but he does use the bathroom pretty much every time you put him on there.  The pooping is what drives me crazy because he normally goes several times a day and so I really have to watch him and try to judge when I "think" he needs to go, so sometimes I "think" he needs to go and it rules my life for the next several hours and he ends up going the minute I get distracted.  Or on Christmas Eve when he pushes me out of the room, ha ha.  I had the idea that it was time for him to go for an hour or so, so I had taken him a whole lot.  I went downstairs at Rick and Lori's with him where he was watching his shows and sat.  After a good 15 minutes of sitting there, he grabbed my hand and acted as if he was leading me somewhere.  That "somewhere" was to get the heck out of the room.  The minute I was out the door, he let go of my hand and slammed it shut, ha ha.  I laughed and decided to take a minute and use the restroom myself.  I came back down 5 minutes later and he came walking to the stairs.  I could smell and soon realized why he wanted me gone, little stink(luckily he had a pull up on that time).

We are making progress but slow so we will just keep working.  I am not sure how to go about it with him going to school though.  I think I will send a bag of clothes, underwear and pull ups and fill the teachers in on what is going on and let them choose the route they want to take.  What ever they choose, we just hope it continues and we will be done with diapers before too long!

Dylan's Teacher Run in

We were at Costco today and had stopped on our way out to eat some pizza!  My kids and I pretty much think that is what you do when you go to Costco, ha ha.  My sister in law had called me so I was talking to her and then Brandon kind of started talking to someone and before I knew it Dylan's teacher popped in and gave Dylan a hug!  I was watching Dylan and the look on his face was priceless!  You could just see the joy and excitement and for me to see how excited he was to see her, out of the school setting, made me so happy!  I know he is in a good place and they all love him, but seeing this just confirmed it!  I will never be able to repay all the teachers(aides) for the help they are giving us with Dylan.  They work harder on him then I do, so they deserve a lot of credit!

His teacher said that she feels things are starting to click better for him and he is starting to move forward.  She also said that when they are at recess he has started to run up to her and lean in as if he wants a hug.  I wonder how many times he tries to kiss them to get something he wants, since he does that at home.  I just can't deny him because I am his Mom and I absolutely love it, but I know I need to stop so he doesn't try to smooch any and everyone to get something he wants!!

Another note!

We got the first note for a little bit.  Short and sweet!  I have been sending mac and cheese or spaghettios the past couple days to give him a variety, but apparently he wants a sandwich!

It also says that he has been so much more connected with his teacher lately and almost always willing to "work" well! That is good to read because for the past 2 weeks I have had to carry him to the bus kicking and screaming.  He just wants to stay home and watch his shows.  Lucky for him, it is almost Christmas break!  I had hoped that once he got to school he would be fine and so this tells me he is!  I have been checking his backpack daily for a note telling me how uncooperative he was that day, so this is much better than I had expected!

This is a little note from Dylan, himself:
∂√cxs cvfuriuytrertgy6hu7yhgtfrdeswaq

And some of his school art work:

Dylan is 4!

Dylan is officially 4!!  I took him to the Dr for his yearly check up the other day(started going to a new Dr because our old one would have forced the vaccines on him and I am not quite sure where to go with that right now) and he is looking very healthy and very big!  He is 40.8 lbs(84th percentile) and 41 inches(67th percentile).  I was impressed with this Dr and he spent a good hour with us discussing both Dylan and Desi and never made me feel rushed.  He said his recommendation is to get the vaccines, but he knows that is up to the parents and he will not make me feel that I HAVE TO.  I talked to him about getting a titer done to see if his body is immune to the diseases from the first doses and to see if we actually need the second dose.  He said 95% of people would come back immune because the first dose actually makes our body immune, but the second dose is to protect in case of a huge outbreak(if I understood correctly) so I don't know what to do.  Other than the fact that he will not be going to Kindergarten until he is almost 6, so I am going to take my time and figure it out by then!

I also asked him his opinion on Dylan's head bonk and told him the story and he said if the MRI came back normal than it was probably good and just timed perfectly with the regression.  I pointed out how the bump is still visible and seems even more visible lately and at first he wasn't sure.  He said he would pull the MRI report and look at it!  Later on though, he did explain how the skull fuses together in 4 quadrants and right down the middle of the forehead would be one.  He said that when it fused it may have buckled causing the little knot on his forehead, that makes sense.  Then he also said maybe when he bonked his head and if it caused a goose bump(which it did) then it could be cartlidge from when it healed and that would always be there.  I think that one makes a lot of sense because he had a huge goosebump and if everything is "good" as they say the cartlidge makes  good sense.  I still wish we could erase that event and see where we were without it though!

We had went down to Nephi on Saturday for a bridal shower, so we decided to celebrate his birthday a couple days early and had cake and ice cream afterwards.  He got lots of cute clothes, shoes, money  and toys.  I found this magnetic fishing game with a fishing pole that I thought he might like because it was something they had at early intervention and he seemed to like it.  Boston loves it and has taken over ha ha.  Brandon found this blue t shirt that he picked out for him and said it would make Dylan "cuddleable" which it does, ha ha.  It looks cute on him!  We took some cake up to Grandpa Jack and Grandma Cindy on Sunday and hung out there for  a bit.

Monday was his actual birthday, and he had to go to school!  He wasn't very happy about it, but when I took him to the bus with a box of donuts, he went willingly!  When he got home from school we headed up to 7 Peaks to the North Pole!  It is something new this year and we thought it would be fun....thought being the key word!  We bundled up because we actually got a lot of snow that day, wahoo!  We went to the Lazy River first where they had bumper boats to take you along the river and had it all decorated like the North Pole, he loved that!  It was after that that the real "fun" began!

We started walking to find the next station and after a couple minutes I looked down and realized Dylan only had one boot and a sock full of snow!  When Brandon got him out of the tube his boot came off.  I ran back and grabbed it and so we had to take his sock off and put his boot on.  I don't think he liked not having a sock on and kept trying to take his boot off.  We saw Santa and hurried and got a picture and then headed to the Avalanche Slide.  Brielle and Boston wanted to go on there so Brandon took them up.  In the meantime (10 minutes)  I wrestled Dylan to get and keep his boots on who knows how many times, put Desi's gloves back on at least 3 times, said a lot of not nice words and am sure people were staring at me wondering what in the world was going on.  We decided we were done!  We took Dylan's boots off and Brandon carried him to the van.  I was hoping we could go on the boat ride again because I knew Dylan loved that, but we were done!  Brielle and Bos were so sad to be leaving so soon, so I had to explain that this is what Autism does on outings.  We try our best to go and have fun, but we as a family have to work together.  Somedays, that means not staying as long as we would like.  It isn't fair to them, but hopefully this is also teaching them in the long run about love, respect, patience, etc.  Something their Mom really needs to learn!

We grabbed some food at Wendy's and headed to the Festival of Lights!  We got a lot of snow that day so it was a good day to go again!  Then headed for home!  I hope Dylan knows that we tried to make his birthday fun and I hope that he had a great one!  I have been doing 20 questions for my older two on their birthday, but since Dylan is nonverbal,  I can't do that with him...yet, but hopefully soon!  At the Dr I had to answer questions on things he could do, pretty much everyone was "NO" and it made me a little sad because he should be doing all of them, but all we can do is keep pushing forward and hope that it all comes to him one day!  We love  you Dylan!!

Cousin Day

Other than keep finding "Naked Dylan" with no diaper on and occaisonally(more often than not) surprises for us(more often Brandon because I am busy running around like a chicken with it's head cut off) to clean up, he has been really good lately!  Happy and always trying to get our attention or wants to be in the vicinity of us more than he has in the past. I love it but at the same time feel bad because we do have 3 other kids and aren't able to give him that constant attention that he seems to be seeking, but at least it seems like we are moving in the right direction!

Today, was one of those days!  I had my 2 nephews and niece over while Cody and Lacy went to work again!  They got here a little before 8 and Dylan's bus picks him up around 8:15.  The kids all went downstairs while I ran upstairs to watch for the bus and get a few last minute things done.  I saw the bus pulling in the Cul De Sac and ran down to grab Dyl.  He was just walking out of the toy room where all the kids were.  When I told him the bus is here, he fell to the ground crying.  I had to pick him up, which he is learning this new technique of throwing himself to the ground and tightening up so it is much harder to just pick him up, and carry him upstairs.  I then had to force his coat on and repeat the pick up Dylan game and carry him to the bus....crying!  When I handed him to the Bus Aide, he climbed the stairs and then turned and looked at me with his sad face, pretty much saying "it isn't fair I don't get to play with my cousins."  Little does he know Brielle and Bos had to go to school 10 minutes later, so they didn't either.

He went to school and as far as I know had a great day!  When he got off the bus, they said "Someone is excited to be home!"  Sure enough no sooner than when his feet hit the sidewalk, he practically jumped into my arms!  I can't deny how that made me feel!  My heart melted! I love that, slowly but surely, his interactions with the world around him seem to be increasing!

Also, we have been asking "yes and no" questions and have got the head nod for "yes" quite a bit!  We haven't got a "no" yet so I am almost wondering if he is just doing it because he knows he'll get something if he does, but he is communicating and that is a step in the right direction so I will take it. The first time I asked him a question, he ran to get cheese so I asked, "do you want cheese?"  I had to ask twice before realizing he was doing it.  It was a very slight nod where he barely tilted his head from the base of his neck down an inch or so.  When I asked him the second time, I noticed it and was so impressed.  Over the past 2 days he seems to be getting it down more!  So I guess to answer his teachers question about him only associating it at school, would be a "No!"  He gets a little smile when he does it too, so I think he is proud of himself, as he should be!

School Update!

I had just left the store when my phone rang.  I thought maybe my Dad was calling to see where we were because he stops by occasionally on his way home from work and it was about that time, but when I saw my phone said Dylan's teacher, I was prepared to head to Payson and pick him up.  When I answered, she said that it wasn't anything bad and he was doing fine but she wanted to talk to me about something to work with Dylan at home!

She said they have been working on answering yes and no questions with a simple head nod and the past two days he has been doing it mostly on his own!  She said they have been asking him things and then touching the back of his head and guiding him with the appropriate response but he is starting to do it on his own, unprompted.  She said he ran over to a sensory table and she was going to get him and take him back to where he was supposed to be, but then she decided to use this experience as a "test" so to speak.  She asked him certain questions(yes or no) about the sensory table and he responded by shaking his head(almost the whole body she says), so she let him play at it for getting the correct responses.  She asked that we work on it at home also and see how he does.  She wonders if it will take him some time because he may associate it with school and that is where he is supposed to do it, so if we work with him at home he can use it in his everyday life!  Small but BIG!!

She also said that they feel like he is starting to make more connections and when they are working with him, he is looking at them as if saying, "What do you want me to do."  Which means he is listening and understanding better!  He was saying "Bus" before we left for Panama and she said since our "trip"(that to her is just a week off of school because as far as I know, she doesn't know what our "Trip" was) he hasn't been saying it.  Probably because we don't work on the word "bus" at home but it just shows how quickly he loses words if they are not ran through that little brain of his daily.  He is starting to try and say it again, she said.  She also mentioned that he is starting to try and say more words and some times they can make out and tell what he is saying.

Here is the kicker!!!  She is very glad that he is a "candy addict"(which if you know Dylan you know that is 80% of what he will actually eat, ha ha.)  The reason she is glad that he is a "Candy Addict" is because that is what they use for the rewards, to praise him when he does what they want him to do.  She said that most kids love recess time and despise group time(where they work one on one with the child), but not Dylan.  He LOVES group time and despises recess time!  Why, you may ask, because that is where he gets his treats!  She said when they line up for recess the majority of the time he will break away and head for the "group" area.  When they make him go to recess, he cries ha ha!

Brain Exercises

I have been feeling a lot lately that we need to start doing the brain excercises that we did with Brain Balance.  Maybe that could help kick start something amazing or something small but to us small is big, so no matter what it's going to bring amazing changes right? Ha ha.

Anyway, we had a busy night yesterday and then tonight was the same.  We finally got around to it just before bedtime but did not go as planned.  Lets just say right before bed time is NOT the time to do these.  I don't remember him putting up this big of a fight when we did them last year, but boy did he tonight!  We started off with the Smells, which are 6 different containers that have smells to stimulate his brain on the side they say he is delayed(i think right but need to go back and check in my notes).  The second he got a whiff of the first smell, the struggle began!  It was almost as if the smells brought on PTSD or something, which.  Like I said he never put up this kind of fight before, so I don't know why it was so bad now.

We got through the smells and attempted a few other excercises but it was not easy.  He was screaming and tightening up and turning and trying to get away.  I ran upstairs to grab the folder with the exercises in it because we couldn't remember what we should be doing.  Brandon stayed with him and started a few more exercises where he has to kind of help Dylan do.  One of them being situps!  I walked back in as they were doing these.  The look on Dylan's face and the expression in Dylan's eyes was something I have not seen in a while.  He was gone, checked out, not there, whatever you want to call it, but I was done at that point.  Lately, he always looks "here" and has not had that "gone" look.  Apparently until I saw it tonight, I hadn't noticed but I am thankful he hasn't looked that way in a while.  By the way, Brandon worked up a sweat trying to get Dylan to do 10 situps, that is how bad of a struggle it was!

I grabbed Dyl and cuddled with him and he cuddled up to me!  I told him we are just trying to help him and we want to help these connections along that his brain needs.  I told him we are not trying to hurt him and that we love him and will do anything for him.  I told him we are going to continue these exercises tomorrow and keep trying until hopefully it gets easier and hopefully brings on more progress!  We called it quits for the night, but I couldn't go put him in bed so we watched a show together for a bit and then I made him mad and took him to bed.  He settled down pretty quick and went to bed.

The look in his eyes tonight took me back though and although we are not anywhere close to the finish line, I realized that we have definitley made progress.  Another girl that I speak with on Facebook that has taken her son once for treatment, talked about the "sparkle" in her sons eyes before his regression.  That is also something we talk about with Dylan.  We miss that!  I hope it returns one day!

Ring Around the Rosy

I haven't posted in a few days but everything has been going pretty well.  We have had our good days and we have had our bad days just like any other!  However, today turned out to be a pretty good day! I watched 2 of my nephews today and so Dylan saw them just before he went to school.  When he got home (which by the way, as soon as he got off the bus he looked up at me and held out his arms wanting me to pick him up! Can you say, "acknowledging a parent!") I mentioned that he missed his cousins.  He immediately lead me to the van and was ready to go.  I wondered if he wanted to go play at their house because he has gone there a few times lately and so he may have been expecting to play with them when he got home!

We ran a few errands and anytime we passed a fast food place with a playground, he broke out crying.  We had to get creative and drive down some back roads to avoid any more melt downs.  We got home and made dinner and Dylan did his thing of watching shows on our bed and downstairs, just his regular routine.  Brandon mentioned that it seems like he comes up to get us more often than he used to if he is left alone by himself for too long, so that could be considered being more aware of his surroundings, right?

After dinner was cleaned up and put away is when the night got really fun and made this old Mom super dizzy!  He was really trying to interact with us, mainly Brielle and I.  He was super happy!  I just love his little smile when he gets in these moods!  Brielle has really been going out of her way lately and really trying to involve him as much as possible.  I think Dylan has caught on and is starting to open up to her, which I absolutely LOVE!  While we were at the store earlier, he was having a little melt down.  Brielle said she had it under control and grabbed his hand and walked with him!  So while we were playing at home it continued and Dylan kept gravitating toward Brielle and I.  Before long we started to play Ring Around the Rosy and Dylan full on participated!  He was even coming and grabbing our hands and initiating the game himself.  Desi and Boston got involved a bit, but anytime it would have made it so Dylan had to hold Desi's hand, Brielle made sure to hurry and switch it up so that me and her would be the ones holding his hand.  She knows that he will not hold Desi's hand for some reason, so she wanted to keep him involved.  However, I have noticed in the past week or so he is starting to tolerate Desi a teeny tiny bit more.  He lets her lay by him for a short amount of time sometimes now! We honestly played for a good 30-45 minutes, so you can imagine the spinning in my head now almost 2 hours later!  But to get that kind of interaction and playing that we were seeing, I would do anything for, even if it makes me sick!

Potty Training

Well potty training hasn't gone so well today. We started out thinking We would attempt both kids but after Brandon ran Brielle and Boston to a movie with Cody and his kids and I ran up and downstairs atleast 10 times(getting new pullups, running the poopy pullup to the garbage, coming back down after to see Desi decided to poop more on the floor, etc. and Dylan had pooped on the couch earlier) in the time Brandon was gone for 30 minutes or so.  I decided we would just focus on Dylan for the time being!  I tried to take him to the bathroom every 30 or so minutes but I think he only peed a handful of times.  Maybe I am jumping the gun or maybe I(and Dylan) am not really ready for this.  I don't want to wait too long and have him just get used to it and think that this is what you do, but I hate potty training!  I think I will just continue to put him on the toilet as often as I can and then next week when he is out of school for the holiday maybe we can help it connect.

In other news, Brielle is an amazing big sister!  She is always, more recently, really trying to get Dylan involved.  I think Dylan really has a bond with her.  She started talking to him and let him lead her upstairs.  After a few minutes they came back downstairs with some bubbles.  Brielle said Dylan threw her hand to them, so he chose them.  She literally had him playing and interacting with her for a good 20 minutes.  I can't get him to focus that long!  She was blowing the bubbles and would try to get him to blow bubbles too.  He was really trying!   He kept hugging her once in a while and just smiled!  It was so fun to see and see the love he has for his sister!  It made this Mom's eyes fill with tears of joy!

We also decided to try the hair cutting thing again... Lets just say this time was a little better!  I would say his reaction was more of being tortured rather than killed.  He was downstairs while I was getting things ready so Brandon went to grab him.  When Brandon brought him up all it took was for him to see me cutting the garbage bag( I lay this down so hair doesn't get on the floor) and he lost it.  He got a little amprehensive when Brandon wouldn't let him go, he panicked.  His little heart started beating out of his chest and he was sweating up a storm before I even was ready to get him in the chair.  However, by the time we started cutting his hair he was already calmer then he was when cutting his hair last time.  He cried off and on the whole time and squirmed a little bit but compared to the last few times it was a lot less dramatic.  Hopefully this gets easier as time goes on because I delay his hair cut as long as possible for this reason.  I have been tempted to take him to get it cut to see if cutting it with scissors rather than hair clippers would be easier for him, but Brandon had a good point today and really didn't want him to cause a big scene at a salon.  I was so tempted to just stop in the Walmart hair salon while we were there today and test it out, but we decided not to.

Mom(meaningful use) and some random things

Proud Mommy Moment:
When I walked to the bus to get Dylan today they told me someone was excited to be home!  They told me that when they turned to come in the Cul De Sac Dylan started saying "Momma" and got really happy!  Now if all his jibbering lately with the "mamamama" isn't saying "Mom" then I don't know what is!
Also, I got an Iphone a couple weeks ago and it has the health app that tracks your steps.  Lets just say following this kid around has its perks!  There has been some days that I have walked 3 miles and that is not leaving the house and not having my phone with me constantly!  On average it says I walk about 2 miles a day, ha ha, who knows how many he does! He will get this Mom in shape one of these days!

At Dylan's IEP meeting a couple months ago his teacher was talking about him following commands but more or less implying that he follows the ones that are consistent and that he expects.  I mentioned one day I told Dylan we were going downstairs and he headed right down.  She seemed to think that was because that is a normal routine of ours, but I just shrugged it off because I didn't feel that way but felt he actually listened and did as I asked.  Anyway I bring this up now because tonight we were having Boston play the Wii because Dylan brings that remote to us which means he wants someone to play so he can watch.  Boston is usually very willing to be the one to play.  After a little while Desi wanted to play and tried to get the remote from Bos, so I told her she would need to find the second remote so she could play(it actually won't work on this particular game, but she is 2 and doesn't need to know ha ha).  Well before I knew it, I was being handed that second remote that was clear across the room, not by Desi but Dylan.  Now you can't tell me that is a "routine" command and that he did not understand what I was saying. I wasn't even talking to him in the first place.  That just made me pretty excited!

We have a note!

Dylan has been back in school for almost 2 weeks(9 school days) and we got our first note today.  Last time Igot one almost every day(or so it seems) the first week back, so hopefully his body is adjusting a little better this time.  The note said that "he did not eat his lunch and just cried off and on throughout the day."  Nothing too big, but not the happy boy he had been lately.  He was super happy when he got home and don't worry he ate for  10 the rest of the night!  I was surprised by the note because he left for school happy where as the past 2 days he kind of put up a fight.  He even threw himself down one day as we were walking to the bus.  The Bus Aide commented and said, " That was new!"  At least to her but to us we see it all to often!  That was because he discovered a chocolate snack cake thing my Dad had given the kids right as the bus got there, so he was not happy I took it away.

He is continuing to strip down naked again!  We had got to where we didn't worry about him and let him do his thing on his own for a while, but that freedom is gone for now.  I told Brandon I need to listen to my intuition more often when it comes to this because I have the thought to check on him for that reason and when I do most of the time it is correct.  In fact, it saved me twice today!  I went and checked on him once and he was naked and just about to use the bathroom, on the floor.  I got there in time to get him on the toilet and save me from a disaster!  Later in the evening, we had just had dinner and I was cleaning up while Brandon was looking at something.  I had that feeling again and told Brandon that I was feeling he needed to check on him.  I honestly expected Brandon to come up and say he was fine and disprove my comment earlier, but he came up with a naked little boy and said I was right, ha ha.

He seems as if he is stripping down when he needs to go to the bathroom, so I told Brandon that we are going to work on potty training this weekend!  We will see how it goes and if we follow through or not ha ha.  I figure we will try the route of taking him to the bathroom every 30 minutes or so this weekend, so that gives us 2 full days to test it out before sending him back to school.  The problem with this is Brandon and I usually go stir crazy and need out of the house when we have had enough of following Dylan around and getting him out of the fridge a million times an hour, so hopefully we can stick it out and it clicks for him!  I also figured we may as well try it on little Desi while we are at it because she is starting to show signs of being ready too!  Wish us luck!

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

Day 3

Todays infusion went a little smoother.  In the waiting room he was busy playing on the couches.  When we went back he started stressing just a little bit and even climbed in the chair himself, until the nurse got closer.  He didn't resist too much when they were taking vitals and was playing with the staff giving them 5.  Once it got serious and he knew they grabbed his arm this time for the poke, he put up a bit of a fight, but nothing like the other times.  Maybe tomorrow will be better?!

Being a holiday week, there is only 4 patients this week.  Dylan, Georgia, a little girl that has Cerebral Palsy, and an older guy but we only seen him once as he was leaving so I don't know much about him.  Georgia's Dad and Grandma are really nice people and are always watching for Dylan.  Jeff got down on the ground with Dylan while he was throwing a minor fit and got him laughing.  He mentioned how Dylan's eyes were focused in and following himrather than wandering around.  He said that is a very good thing.  I told him that is an improvement from last time.  I am excited to keep in touch with them and see how Georgia does.  She is 15 and this is her first treatment, so it will be great to see what improvements they see too!

We went back to the hotel and went swimming, because the day started out a little rough.  When we went to have breakfast he noticed the pool and put up a fight at breakfast.  Other than that we walked around the Mall here and around the area a bit.

Views from our hotel

Dylan made himself at home on this extra long couch and ran around on it and stacked up the pillows

The mall across from our hotel started decorating for Christmas.  They had this table full of these little houses and reminded me of my Mom.  She loves this stuff or at least I think she does because I always made sure to get her them when I was younger ha ha!

Day 2

We had our first injection today and it went just as well as back in April, but maybe a tad bit better.  Once we got to the clinic and was in the waiting room he started whining a bit and wanted to go.  Once we went back he really started to stress out, but Lori sat in the chair and held him and I held his legs.  They tried in his wrist but it came out, so they had to retry and got it in his arm.  Then we were good to go!

We had Javier, the driver, take us to the Panama Canal so Lori could see it, but Dylan was wanting out of their pretty quick.  We got there right after the last ship until evening had just pulled in, so for the 15 minutes we were there she was able to get a glimpse of how it was done.  Later that afternoon we decided to walk to the other Mall that Brandon and I had gone to.  I realized we are only about 5-10 minutes, walking, from where we stayed the last time, so we headed that way.  They had some life sized remote control cars, kind of like the animal riders in the Provo Mall.  So I drove Dylan around for 15 minutes, except the first one broke down and we had to exchange it.  I don't think there is enough room in the Provo Mall for these or I would suggest it.  It was pretty fun!

It is Panama's "Independence Day" so they have a few day long celebration with some parades. We haven't really seen the parades but put on the Tv for a minute and was able to catch a glimpse of it.  They seem to have a lot of  Marching Bands type things.  The receptionist at the clinic said the schools practice from like April until now for this, so they take it very serious!  The plus for us is the traffic is pretty much non existent because they close the roads down, except the back roads which Javier knows well!  Brandon and I had talked up how crazy the traffic is but now we look like we were nuts, ha ha.  Javier said it will be back to normal on Friday, so we will see.

Day 1

Today we had our first visit which consists of meeting with the Dr and getting blood drawn.  Once we got to the clinic Dylan realized where we were and started stressing out. He wanted out of there and quick.  The only door in the waiting room he could open was the bathroom but he would have been fine hiding in there if i would have let him.  He laid on the floor and cried.

When it was time to go back his cry got a bit more nervous.  We met with Dr Barnett this time and talked to her about improvements, changes, anything we felt she needed to know.  Dylan had got sick last Wednesday and threw up then he got a rash all over his legs, belly, arms, face and the rash is still here a little bit.  I told her I took him to the Dr and they said it was a virus leaving his body.  She seemed to agree but felt we should put an antifungal, antibiotic cream on it to clear it up and prescribed it so we could go pick it up.  She said being a topical ointment wouldn't mess up the stem cells so that works!

When we went to the next room for the blood draw, dylan was really starting to stress out.  They opened the door and our new friends were in there.  Jeff immediately said, "it's our friend Dylan.  We knew that was him and was all about comforting him". We went in and they got ready for the return of "the strongest 3 year old". I sat down to hold him but by the time they were ready, he had wriggled loose and so Lori sat down with him and held him tightly.  I helped with his arms and legs and kept talking to him and telling him he would be fine.  After they got the blood, we just had to make the payments and then was time to go.  Now tomorrow is the big day and we have our first injection!

I love this picture because it is him jumping in the water and caught him mid land!

Dylan loves swimming so we did a lot of this!