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!

Fuimos(or something like that) A Panama

Out to lunch with his family before we left

We drove down to Las Vegas to catch our plane to Panama on Halloween.  We had a great ride and Dylan was amazing! We stopped in St George to eat and let Dyl run around, but other than that just kept driving.  He didn't even fall asleep until the last 30 minutes of our drive.  Our flight left at 11:36 pm but got into Vegas around 8 so we had plenty of time to let Dyl stretch out and use up some energy.

While we were in the airline check in line I noticed a teenaged age girl walking on her tippy toes, like Dylan, and instantly wondered if she was on the spectrum.  A little bit later Dylan was kind of stirring in his stroller and wanting out.  This teenaged girls Dad started talking to him and just making small talk to comfort him.  A minute later the girl let out a scream which confirmed my suspicions, then I wondered if they too were going for treatment.

We got through check in and security pretty quick and went and sat down near our departure area.  Then Lori started walking around with Dylan and letting him go up and down the straight-way escalator thing.  After a while they came back and sat down.  I took on the turn of walking with Dylan.  As I was walking away I thought maybe I should grab my phone and bag because I wouldn't have an ID or phone, but shrugged it off thinking I would just be right there.....WRONG!

It only took Dylan a few minutes to discover another escalator and run over to it.  As he got on I went to grab him but then noticed another escalator to the side and figured we could just come right back up, so I decided to just follow him and got on.  Well we got to the bottom and went to go back up, but quickly discovered, it also went down and not up.  I then noticed baggage claim and started stressing thinking we just made a huge mistake.  I found a set of stairs that went up across from where we were and sure enough we came up at the check in spot.  I was freaking out!  I didn't have my phone, ID, money, except $10 in my pocket, we were screwed!!

I went to the  heck in station and explained that Dylan is Autistic and got on the escalator so I followed him down and didn't have my phone or ID.  They said they could page Lori and hope she got the message and come meet us, but that was about it.  I found a phone and tried calling her and even Brandon, who was home, collect.  I assumed Lori had turned her phone off because it went to her voicemail and Brandon did not answer.  I continued to keep asking the airline employees if they had heard from Lori and call these two phones for what felt like an hour(probably at least 20 minutes). I was freaking out, Dylan was bawling and trying to run from me.  I was trying to use the phone while he is screaming, I put him down because he is screaming and I can't hear the operator instructions, he tries to run off.  I grab him and pull him back, he falls to the floor screaming.  I say some mean and pissed off words(which Brandon just informed me tonight Nov. 2  that my other son has picked up on a not so good F word and yes I am to blame!) to Dylan and I am sure this scene looked very mean and chaotic, but I had no idea what to do.  We had an hour or so until boarding and I figured we would have to go through security again"if" Lori got the message and was able to gather everything up and come find us, whew it was chaotic!

I asked the airline lady if she was sure I could not talk to security somewhere and get them to help me. She was probably so sick of me and finally the Supervisor went to the gate to find Lori.  A few minutes later I look up and there she is! I was so glad it all turned out and we had enough time to go through security again.  This time through my bag was stopped for some reason and when they checked it she asked if I had anything sharp in there.  When she looked inside and saw the wet wipes she said she thought that was something else.  So beware of scary wet wipes, I guess.

We got back to the gate with half hour or so to spare and was not going ANYWHERE again ha ha.  Lori took Dylan back on the straight escalator but I warned her "Do not let him see the other set." The guy from earlier came and asked if that was my brother or son, so I let him know he is my son ha ha. We found out they are taking his daughter, Georgia, for her first round of Stem Cells.  His name is Jeff.  Both Lori and I have admired his patience and how sweet he is with his daughter.  I told him what happened and the fun we had had.  Turns out they were a couple rows behind us and when we got on offered to hold Dylan while we got adjusted.

The. Flight was great! Dylan fell asleep right before we took off and slept until we landed.  We didn't sleep that well, but dozed off a little bit.

Daddy

Dylan came home today from staying at his Grandparents for their Halloween party and has been cuddling with us and wants to be around us.  We have really enjoyed the night with him.  About a half hour before bedtime, I was downstairs watching a show with him and then Brandon came walking down with a drink in hand.  Not just any drink, but Dr Pepper.  My kids are like their Mom and love their drinks ha ha.  Dylan immediately noticed what was in Brandon's hand and grinned from ear to ear and went right to Brandon.

Brandon gave him a drink and sure enough he was back for more in 10 seconds.  This time Brandon said to Dylan, "Say Daddy...D.A.D.D.Y" and was just about to give him a drink because this is something Brandon does all the time and gets no response out of him.  But...

Just as Brandon went to tip the cup to Dylan's mouth, we both heard clear as day, "Daddy" and then he took a drink!  Brandon and I just looked at each other in complete shock, but we both heard it and couldn't deny it.  Just like when I posted about the first time I heard "Mommy" post stem cells and the music it was to my ears.  This was the exact same feeling!  I loved the fact that we were both there to witness it!  I guess this would be what they call "echolalia"  where he just mimicked what Brandon said and maybe not really saying it on his own free will, but the fact that he actually said, "Daddy" was amazing!

We will be heading to Panama Saturday night for round 2.  I am excited but nervous at the same time.  On the Facebook group there has been a lot of people lately that are reporting back that they are having lots of tantrums and hyperactivity, but then it eases.  The fact that he seems to be getting to a pretty good point and the thought of having to go through the tantrums and stuff makes me nervous.  But I know we will see good come from it eventually, so we just have to push through and hope and pray for the best!  I just hope if we have a period of tantrums and really bad behavior, it comes around Christmas break.  I am still trying to keep this from his school because I really want an unbiased opinion.  Last time we went over Spring Break and so they didn't know he was gone for a week.  This time he will miss a week of school and when he comes back and acts off the wall, they may wonder what is going on and I will have to fill them in.  Let's also hope that that doesn't happen!

Escape Artist Returns

I was out cleaning out the garage and Dylan was there with me.  He was playing on the bikes and kept sitting in the Power Wheel car and was very content.  He pushed the wagon over to the van and next thing I knew he was climbing on top of the van.  I wanted to get him down but then I thought he was being a little boy and I decided to let him enjoy it. It wasn't long before Boston joined in on the fun!  I was loving the fact that I was getting something done and I was outside with Dylan and actually enjoying my time because I wasn't worried about him running off or having to follow him around.  I even thought to myself at one point, "this is so nice that he is just hanging around here in the garage and entertaining himself.  I love that he is not running everywhere!"

After an hour or so, he started getting a little restless and tried to get into the van.  That usually means he is ready to go.  I turned around for a minute or two at the most and when I turned back around he was gone.  I slowly walked behind the van, figuring he had just gone back there, but he wasn't there.  I looked across the street where Brielle was playing on the neighbors porch, but he wasn't there either.  I walked to the side of the house and looked down the sidewalk but still no Dylan.  I went to go back towards the house because I figured there was no way he made it that far in the minute or two that had passed, but then had the feeling I should really run to the end of the sidewalk and look down the corner, just in case, because that is a pretty busy road and wanted to be sure he was not in danger.

 As I started running down the sidewalk, I noticed a city truck driving along the busy road quite slow.  As I got to the end of the fence, the guy yelled out, "Is that your kid?"  My heart dropped and then I knew where he was.  I quickly asked, "Where?"  He pointed to the opposite way I would have looked, so I am thankful for him. There he was just entering the lot of the Leland Mills that is right next to our Cul De Sac.  I yelled at Dylan and told him "No!"  As soon as he heard me and turned and saw me, he let out a little whine.  I could tell by his reaction he knew he was in trouble and wasn't supposed to be doing what he was doing.  By this time there was 2 other cars slowed down watching him.  I wanted to  yell out "He has Autism.  I just looked away for 2 minutes. I'm Sorry!"  But I kept my mouth shut, grabbed him and headed back home.

Progress

I met with Dylan's teacher a month or so ago, but got this report today.  He is making progress and that is what I love hearing!  I love that at the end of the first "Comment" it says, "We Love Him!"  He is in such a good, caring and educational environment!  They are our "angels in disguise" for our little guy!  He is really starting to try and socialize and communicate the best he can!  He is also doing well with matching colors and objects such as animals!  He is doing well following commands in memorized routines such as, "sit down," "raise hand," "come here," "throw in garbage."

I am beyond excited and proud for this little guy!  It is so simple for us to understand and do these simple things, but it is not so easy for him.  He is doing it and I love it!

This note came home last week.  I have yet to hear him say Bus or Hi but I know he does.  I have witnessed him on many occasions waving "Hi" and "Bye"  It is the cutest thing ever.  The other morning I went in and said, "Hi Dylan! Good morning!"  I was greeted with a cute little smile and two hands shot up as he was opening and closing them very rapidly.  That is his wave.  I loved it.  That morning he even was waving to the other kids too! Waving is his new constant so I like to egg it on.  That and giving me a kiss when he wants something!  I love that too, but am trying to break that habit in case he tries that on everyone else, that would not go over well, ha ha.  But as a Mother, it makes me so happy!

This picture may look like a typical 3 almost 4 year olds coloring page, but just a month or two ago he would make a mark or two and he was done.  Since I don't talk to his teachers on a daily basis any longer, because he goes to school all day, I am assuming this was all him!  Maybe they helped him or maybe it was all him, either way, I was so excited when I opened up his back pack and saw it!