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!

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.