Momma????

Brandon has asked me before what will I do when I hear "Momma" come from Dylan's mouth again?  I really don't know the answer to that one, but I CAN NOT wait to hear it!  My mind always goes back to just before Dylan started regressing.  This one night in particular a few weeks or so before the regression, he had learned to climb out of his crib and we kept sticking him back in, you know playing that fun game until he gave up.  Brandon got pretty creative(desperate) that night and rearranged his crib all sorts of ways to block the door, so if he climbed out, he wouldn't be able to get out of the room.  It took a while, but finally worked.  Any way that night and even any day he woke up from a nap or sleeping in general, I would hear MMMOOOOOOMMMY, in the cutest little voice and just typing this I hear that exact cute voice in my head.  I have missed that sooooooooo much and can not wait to hear it again.

So back to tonight.  I was turned around facing the stove making dinner.  Dylan had been coming to me to get me to turn the tv on his favorite show Team Umizoomi because Brandon kept turning it to something different.  But this one time was different!  I was facing the stove and all of a sudden I "think" I hear, MAAA-MA.  I turn around to find Dylan almost to me, not looking at me but he grabs my hand and pulls me towards the TV to where we keep the remotes.  I think, "I swear he just said Momma" but just continue on thinking I heard things.  Then Brandon says, "Momma, I think he just said Momma."  Then I knew I was not hearing things!  I don't know if he was actually saying it, but boy did it feel good to possibly hear it and know we are moving forward!

I didn't want to rub it in Brandon's face or anything, but I really wanted to hear it again.  About 10 minutes later I grabbed Dylan and asked, "Who am I?"  "Am I Momma?" a couple other ways trying to get him to say it, but nothing.  But I will not forget this, "The First Time I Heard Him Say Momma After His Regression!"

On another note:

He has been stripping down to his "birthday suit" again.  Today as soon as we walked in the door from getting him at school he did it.  I just let him run around that way for a good 20 minutes and decided I should see if he needed to go to the bathroom.  He sat down and with in 10 seconds pees and poops and hops off.  I grab him before he runs off so I can wipe him.  A few minutes later, still naked, I find him over by a desk of Brielle's, standing to the side and looking like he is concentrating.  Then it hit me, he was trying to poop again.  I run over and luckily happened to have some tin foil in my hand and catch it as it falls.  Darn it, I  thought we might be on to something just 3 minutes prior.  Oh well, it will come eventually!

"Race Track"

Lately Dylan seems to be hitting a lot more than he ever has when he is frustrated.  It is just little smacks but it makes me nervous what it could turn into when he gets really frustrated, especially with his little sister because she is so little and doesn't quite get whats going on so she tends to push his buttons!  I have noticed lately when this happens, Desi will slowly sneak behind me and lean up against me as if she is hugging me.  I don't know if she is trying to comfort me or looking to me for comfort.  I just hope that one day Dylan and Desi become the best friends they are supposed to be and the best friends that Desi wants to be!

Brielle lately seems to be trying more and more to interact with Dylan.  We have never really sat them down and told them what is exactly going on with Dylan.  We have mentioned he has a thing called Autism and more or less his brain doesn't work like ours and doesn't let him talk, play, communicate etc.  We have also told them if they ever see another person that doesn't talk or if they see similarities that they notice with Dylan to be extra kind and patient with that person because they probably have Autism, like Dylan and we know what comes with it.  I don't know how you really go about telling your other kids that their brother is "different" than others because I want him to be treated the same and be able to do the same things.  I think Brielle is getting to the age where she is noticing and picking up on more and wanting to help.

She will randomly get in his face and say, "Hi DyDy, give 5"(DyDy is what he used to call himself)  The grin on Dylan's face when she does this is awesome!  He seems so excited.  Tonight we had put him down to bed and was about to shut the door.  She ran in and said she wanted to tell Dylan goodnight.  She went over and put her face up to the crib and asked Dylan for a hug, she reached in but never got the hug back.  She walked out and told him goodnight and looked a little bit disappointed.  I told her even though she felt like Dylan didn't care about what she did, that I know it meant something to him.  I told her we just need to keep trying and working with him and one day he may just say, "Brielle remember when you gave me a hug in my crib!"  I just need her to know the little things mean a lot to him.

She said to me, "Those little things that don't mean a lot to us, mean a lot to Dylan because of his Autism.(When she uses the word it catches me off guard, because we don't say it a lot around here, we try to avoid it, I think)  His Brain isn't like ours.  Ours is a straight race track where we are almost to the finish line and his is a curvy track where he is stuck on one of the turns."  Where she got that analysis, I don't know, but she has a good point.  I am so excited she is getting to an age where she is going to be such a good help and support to her little brother!

Week 2

Other than a few more notes from Dylan's teacher, we haven't seen much changes with him and the tantrums are still coming!  By Wednesday Dylan had come down with a cough so his teacher said maybe whatever was bothering him finally broke through because he was a lot better for them on Thursday.

He woke up with hives on Thursday morning, but I put some anti itch concoction Lori had brought up on him and he seemed fine, so I sent him to school.

I went to get him up on Friday and was sound asleep and with the week he had, I figured I would keep him home.  Good thing I did, because he was on one that day!  I took the advice of his teachers and found some tie shoes(let me tell you that was not an easy task.  I looked at 4 different places and finally found one.  Everything is the slip on shoes or velcro or elastic "shoe laces" to make it easier for the parents).  Any way, I noticed the shoes he wears was literally falling apart.  I attempted to put the new shoes on and he was not having it.  I eventually, pretty much, sat on him to get his shoes on.  He's screaming, I am screaming, it was FUN!  I get his shoes on and in 2 minutes he is able to get one shoe off, but can't get the other.  I think his teachers and bus aide are not going to like his new shoes!  The day pretty much continued that way on and off.  Except I took them to Carl's Jr and he sat by me for a good 10-15 minutes eating, if you call eating fries eating.  Lately that is all he will really eat.  By Friday evening, he wasn't feeling like himself and just laid around, so I think his teacher was right.  He is coming down with something.  I just hope it is not something that requires an antibiotic, because we are supposed to stay away from them for the time being.

One thing I have noticed is he seems to be regressing a little bit.  I know it is early on but they said that most parents report a regression in 6-8 weeks.  He is starting to not like the feel of his clothes a lot like he did at one point.  We had a few "naked" episodes over the past couple days at the house and I hope he does not do that at school.  I told Brandon that I think we need to start the Brain Balance exercises up again and work on building the right side of his brain again.  I think that could help this pass a little quicker because when we were doing his exercises, he quit doing things like getting undressed.  So hopefully we can start squeezing that in again along with the millions of other things we have going on with him and the rest of the kids right now!

Saturday he still seemed a little out of it and broke out with hives a little bit.  We had a busy morning/afternoon, so I didn't spend a lot of time with him.  Now he has gone to his Grandparents house so hopefully he is feeling a bit better and not giving them a hard time!

Wrong Side of the Bed

Dylan woke up not so happy this morning.  While doing our morning routine of having breakfast, getting everyone ready and watching Team Umizoomi, we had several melt downs.  I couldn't figure out what was causing them and trying to put his shoes on was quite the task.  I was about to just put his shoes in his back pack and send him to school.  He always takes them off on the bus anyway, so it would save me time putting them on and the bus aid time for picking them off the floor!  I was finally able to get them on and the bus came so I sent him on his way.  The bus aid could tell he was having a hard time and made some comment.  I told her, he was on one this morning, ha ha.

With the way the morning went, I totally expected a phone call from his school to come and get him.  After I picked Boston up from school, we decided to go to Carl's Jr and eat and let him and Desi play for a bit.  While we were there my phone rang and sure enough it was Dylan's school.  His teacher was saying that they just was not sure what was bothering him or why he was having such a hard time but they had tried so many different things to see if they could get him to enjoy school that day.  I just laughed a bit, so I am sure she thought I was a crazy parent, but I knew that call would come!

 I really am impressed with what they did before getting to that point, because I wouldn't have been able to hold out that long.  They tried things like: Letting him keep his shoes off, several different sensory things, let him wander and see what he wanted to do, let him sit where he wanted to sit, and several other things like that.  She said he is always tugging at his clothes like they are bothering him, so they even tried a shirt made from different material then what he was wearing.  They rubbed him down with a sensitive lotion.  Even when she called me, she wasn't giving up, she was calling to get my advice and see if there was any specific thing I have noticed that bothers him.  Unfortunately, there isn't.  I told her I could come and pick him up, but she said they were at recess and once they got back she would see how he adjusts again.  I got a phone call two minutes later, so I said I would be on my way.

He fell asleep on the way home, but later that evening we had more melt downs.  He definitely is tugging at his clothes a lot and seems to be itchy.  Also, yesterday when he came home from his Grandparents I noticed he had a little goop in his eyes and wondered if he was getting an eye infection or allergies.  This morning his eyes were pretty cleared up, but a little puffy.  That was one of the suggestions his teacher mentioned because she said they didn't notice any signs of a sickness, but that his eyes were puffy and wondered if he had allergies.  We will keep our eye on things and see where it goes from here, but I think we are just going to have to let it run its course and hopefully those stem cells are in there working hard on repairing something on the inside!  I must also note that Dr Diez said parents typically report back that around 6-8 weeks after stem cells, they see a regression.  I wonder if this could be part of that regression?

Sounds

When picking Dylan up at school today, his teacher said that he is attempting to say more words.  She said sometimes it is just the first letter, but any sound that he attempts is great!

Let's Go

I went to pick up Dylan from school today and was talking to Mrs Heelis about the note from the day before.  I had also emailed her and let her know that I wondered if it had something to do with starting to be aware of the potty sensation, so we were just carrying on between the note and my email and the fact that they have noticed he seems to be bothered by his clothes and is taking his shoes off more than usual at school.  As we were talking one of the aids took Dylan to get his back pack and coat on.  Desi had come along with me to pick Dylan up and she makes herself at home when we go there and usually heads for the little chairs and sits down.  She was on her way to the chairs and Dylan was on his way back from getting his coat and back pack on and he stops in his tracks right in front of Desi.  Then he slowly reaches out and pulls at Desi's shirt almost as if he was saying, "Come On, it's time to go."  We all kind of laughed and one of the aids was like, "You don't want to stay here. It's no fun, ha ha"(as if Dylan was saying that).  Desi did not move so Dylan reached out and grabbed her hand and gave her a little tug.  I was impressed with the hand to hand contact because he has never held her hand and wants absolutely nothing to do with it when I have tried.  Usually while playing "Ring Around the Rosie", he will hold my hand but no way will he hold hers.  Desi seemed to be caught off guard too and just continued to stand there, not moving.  I picked her up and we were on our way!

A Note from Dylan's Teacher

We are trying to keep Dylan's school completely out of the loop on stem cells, but everyone else knows so I am sure it may get back to them ha ha.  His teacher's daughter was my college roommate and a good friend of mine, luckily she is in Italy for the next couple of years with her husband in the army! Anyway, we want an unbiased opinion and where they are with him daily and knew what kind of progress he was making, we figured they would be great to give us that feedback.  So for as long as we can, we will keep them in the dark and when the time is right, we will fill them in!

Like I said in the One Week post that Dylan has been throwing more tantrums than normal.  Apparently he is also doing this at school.  This was the first note I have ever received in his back pack, probably because I pick him up 3 of the 5 days, so usually we talk about the day then.  Here is what she had to say about today:

Dylan has seemed a little irritable & extra sensitive to being touched the past couple of days.  Today he has had quite a bit of mucous coming from his nose-maybe starting a cold.

One Week

Today is one week since Dylan received his first injection of stem cells!  It has been a roller coaster of emotions to say the least.  When we got into Panama he started throwing random tantrums, that he had never really done before.  We just figured it was a new environment and so no big deal, but at the same time, I was completely stressed because we were also in a foreign country that I did not speak the language so that made it a little more stressful.  Well those tantrums have came home with us!  For instance today, he threw a major one, well a couple actually.  The one that he threw that I found interesting was after we came home from the park.  We were outside and he started screaming and came to me pulling at his diaper, almost as if something hurt.  I looked in it to see if he had pooped because for awhile now, he has almost immediately taken it off when he does.  There was nothing in there, but he pretty much started stripping down outside.  I grabbed him and carried him inside, kicking and screaming, and lay him down on the floor.  I took off his pants and diaper and thought about taking him to the bathroom to see if he would go, instead I decided to record his tantrum for documenting!  Well a few minutes in to the recording, as he is kicking, screaming, flopping around, he kind of settles down.  I didn't realize that at the time, but then all of a sudden I notice he is peeing.  This tantrum I am almost certain was because he needed to go to the bathroom and he has more body awareness than he had one week ago.  It must be a completely new feeling and he has no idea what is going on!  He has also came to me at times and put my hand on his head, under his arm, and on his toe after he stubbed it.  I am 100% sure he is getting input back to his brain now when something is hurting or feeling different!  MAJOR POSITIVE!!




He seems to be trying to talk a little more too.  To date I have heard:
Dwe- Drink
Ha- Hand
Petsi- Pepsi(You can bet he earned that and I gave it to him!)
Chooie?- Cookie
Show- Show(I am almost certain that is what he said.  He had grabbed my hand and was leading me to our garage where we have a deep freezer.  He took me out there and opened it up and grabbed some chicken nuggets.  I am always asking him to show me what he wants, so IF that is what he said, that would be why he said it which would show more comprehension)
These were words I am almost certain I had heard him speak before his regression, but they are coming back!

He has been such a smiley little guy too!  I can't help but melt every single time I see that handsome boys smile!  My neighbor stopped by for a minute today and Dylan turned and smiled at her.  She commented on his smile, so I don't think I am being biased when I say he has such a cute smile!  His eye contact seems to be improving as well, but I wouldn't say it is a big change yet.  I did have his attention for a good 10 minutes today where we were playing and I had constant eye contact!

As for negative side effects, I can't really say that I have seen any.  The tantrums could be considered negative, but I look at it as he is getting awareness of his body.  Who wouldn't freak out if all of a sudden you started feeling things you haven't felt in a while.  I now understand what the therapists had said about needing to get him tight fitting shirts to make him aware of his body.  I really thought they had no idea what they were talking about, because he used his body like he should for the most part.  I can now see, something was definitely missing!  We can't wait to continue to watch and see what changes will come next on this little journey.  One things for sure is we are going somewhere and going somewhere wonderful!!

Dylan's Welcome Home Party!

We arrived home to this:

These notes were hanging up down our hallway:

Mia's specific message to Dylan and it had to be word for word!  Cute!

Welcome to Family Vill ha ha!

 Can you say, LOVED!! This kid has got so many people rooting for him!


We did not think of getting pictures of everyone that made these signs and were here to welcome him home but there was a group that definitely love this little guy!  His brother, Boston, and sisters, Brielle and Desi(but she was sleeping), Grandma Lori, Nate, JoDee, Lily, Mia and Lucas!  I got Dylan out of the van and told him to see who was here.  I sat him down and walked out of the garage, he kind of just stopped and stood there.  Then there it was, a little smile and he ran right to his sign and balloons!  For a brief minute, he showed his excitement and then was off to running around again.  I thought it was such a cute and heart warming "Welcome Home".  The signs were so cute and went down our hallway and were definitely made with love for the little guy! Grandpa Jack, Grandma Cindy, Cody, Lacy, Tom, Tessa, Jace and Nolan stopped by the next day also to see how things went.  Some observations noted by them was he seemed to have a little more eye contact!

Panama

The Stem Cell Institute is amazing and has someone inside the airport to meet you right at the gate when you get off the plane and rush you through security and customs, so we were out of there with in a half an hour and then waited for William our hotel and transportation coordinator to pick us up.  I was very thankful for this service because we do not speak Spanish and it was amazing to have our own personal helpers to get us through!  William was running a bit late and said he passed an accident and that there was also one on the other side of the freeway in about the same spot, so that tied up traffic a bit.  We got heading towards our condo (Pacific Sun) that we would be staying at for the week and had just got onto the freeway.  Not too long after, while William is telling us all about the crazy drivers in Panama, sure enough here comes a car coming down the wrong way.  From that point on, Brandon and I had no desire to even try to drive or rent a car while in Panama.  We would be perfectly happy sticking around the condo and walking to where we needed to go.  Which walking can be just as scary as driving because they don't really have very many specific cross walks.  People just walk out and cross the street and drivers stop for them, but very scary at times!  We spent Easter hanging out at the condo and doing what Dyl loves most, Swimming!  We walked down to the Super 99 grocery store and got some groceries to get us through the week and later made our way to the mall to walk around.  I thought we would run into some English speaking people so that we would be able to communicate a little, but no, that was our biggest problem of the week.  Next time I want to study the language and maybe refresh my high school lessons and hopefully be able to get the basics of communication down!

Monday April 6th we were picked up by our driver, Javier, and he took us to our appointment.  They had to take Dylan's blood to have some basic tests ran and give them a little information about Dylan.  Dr Diez met us in the lobby and brought us back.  We spoke with her and gave her some family medical information and information about Dylan's birth and his regression.  She asked if we had any questions and informed us more about stem cells.  She said that a lot of patients report back that in about 6-8 weeks they see a regression and then the improvements really begin.  She assured us that the mess???? cells will not cause tumors and the only side effects we may see is a headache and slight fever.  We warned her that Dylan is very strong and she assured us that they have seen it all!  We were then ready to begin!  Two others came in to help out, Santa Maria and Angelique and Dr Hernandez.  We held him down and they started.  Even though Dylan was being held down by all extremities he was still able to wiggle his elbow around causing his veins to move, so they really had to dig around and then pull out.  They went through the other arm and successfully got the blood they needed.  Dylan just cried and cried and was heart broken.  We had about 15 minutes in between before the cells were injected.  This time they went for his foot and seemed to be a little smoother of a process.  After that we were good to go on about our day.

The Easter Bunny brought Dylan this shirt.  Even the Easter Bunny knew good things were on there way!

I may be a mean Mom, but isn't that the cutest sad face you've ever seen?

 We decided to give William a call to see if any drivers were available to take us out and see some of the sights.  We were able to go to the Panama Canal, Casco Antigo(the old part of the city) and a look out point of the highest part of Panama, Volcan Baru.  Julie was our driver and was amazing!  Since Dylan is not the easiest kid to walk around with because he runs around and you spend more time chasing him than paying attention to what is around you, we chose to just drive through Casco Antigo.  Julie pointed a lot of the buildings out to us and we still had a good time doing it that way.  By the time we were almost back to our condo Dylan was about done any way, so it was a perfect little get away.  We decided that evening to let Dylan go for one more swim.  The pool where we stayed is pretty cold and seemed to always be windy because it is in between to big buildings, but with the humidity it wasn't too bad once you got in.  Well apparently since the sun had gone down the water must have been COLD!  We put Dylan in the kiddie pool and he was out within 10 seconds.  We figured he would get back in but then realized he was heading to the elevator.  We followed him and he walked right in and was ready to get back in to the room and getting undressed as soon as possible!  It was so funny to watch!  That day I think he showed a little more alertness than usual.  I think he may have had a headache by the end of the day because he grabbed my hand and put on his head several times, but didn't seem to bothered by it.

Tuesday April 7th we didn't go in until the afternoon.  We wasted the day away swimming that day.  When we got to the clinic, we had to wait a while for the cells to be brought in from the lab.  This day Dr Diez, Angelique and Dr Hernandez did the procedure.  This day also let us know that yes he is a strong one and I don't think they expected him to be that strong ha ha.  They also injected the cells into his foot this day and while they were at it, planned the next days spot just to be prepared and to make it as easy as possible.  This day, I feel he was also more alert but no big changes.  I am pretty sure he knew where we were and what they did the day before but did not freak out in the waiting room and sat there pretty contently.

Other than the clinic we spent the day swimming and exploring the city around us a bit.  We found a park and went and played for awhile.  It was right by the Ocean which Dylan really wanted to throw things into but you can't get close enough to it to be able to throw things at his age.  By this time, we had pretty much given up on trying to find a local place to eat for two reasons.  1.  We was really struggling with the communication.  2.  Even if we were able to communicate and order something, most likely there wouldn't be anything Dylan would eat and if Dylan wasn't eating then we would be too busy wrestling him around to be able to eat ourselves.  So we spent several different meals throughout the week at good old McDonalds ha ha.  We went to the mall again this day and found the kids souvenirs and a sippy cup that we had been searching all week to find.  Who knew a sippy cup would be hard to come by?

Wednesday April 8th, we went in the afternoon again.  While waiting in the waiting room Dylan went from my arms to Brandon.  We had to wait a little bit for the cells to be delivered that day too.  Dylan dozed off in Brandon's arms, which never happens.  That made Brandon feel good that he felt comforted by him.  They took us back and said to just let him sleep and figured with the small needle they use for the IV that they could sneak it by and Dylan wouldn't even wake up, WRONG!  He woke up kicking and screaming.  They had got it into his arm and was pushing the liquids through but with as much of a fight he was putting up, his veins closed off and would not let anything go through, so they had to pull it out and try again.  They went and got Santa Maria to help out after that.  Santa Maria went right to his foot and with all of us holding Dylan down, it was super quick this time!  Brandon said that was the worst one yet because Dylan was asleep and first thing he saw when he woke up was him.  He was certain Dylan would feel betrayed since he had been his comfort just minutes before when he fell asleep.

Just before he fell asleep

Just before he was rudely awakened, poor kid!

Thursday April 9th, There was a big presidential meeting going on the next day and all the presidents would be arriving so they had everyone come for treatment in the morning so they could close down the clinic by Thursday afternoon and Friday all day.  They completely closed down most of the roads, making it impossible to get to/from the clinic.  There were about 5 or 6 patients, along with 2+ additional people per patient(most were young children patients) squeezed into a small waiting room.  From what we observed throughout the week there were 3 Autistic patients and the rest were Cerebal Palsy patients.  Angelique came out to the waiting room and saw Dylan and pulled a funny(but playful) face and said, "there's my friend Dylan"  The look on her face was like "Oh No!"  We just laughed.  Then when it was our turn, we went back and this time Dr Diez and Santa Maria was waiting for Dylan.  Brandon said it was smart to have Santa Maria there for the first try, ha ha.  We took our places and held him down and with Dylan putting up a fight, it was over.  This time they successfully injected it into his arm!
Afterwards, we met with Dr Diez and went over Dylan's lab results which she was very impressed with.  His platelet level is very high, so she said on paper Dylan would be a wonderful candidate to donate blood!  But being a Dr that had just successfully treated Dylan this past week using a needle, she knew trying to get the blood from him is a completely different story!  She told us that Dylan will forever have a reputation at the clinic and will be known as, "THE STRONGEST 3 YEAR OLD IN THE CLINICS HISTORY!"  We all laughed because we knew it was true.  By the time each injection was over, everyone was working up a sweat ha ha.  The only result that was high was the Erythrocytes, even that was just barely high.  She said she wasn't going to worry about that because it could have been that he was slightly dehydrated when the blood was drawn and if she treated this than it would make his iron levels go higher and they were already towards the higher acceptance level.  She said it would also constipate him, so we are not worrying about something so minor.  She suggested giving him Vitamin D, but not too much since it is almost Summer.  We have started giving him a supplement(Vemma) that should help with that.

The rest of the day was spent swimming and doing a few last minute walking around the city and eating at McDonalds!  We had ran into a Grandfather that was there with his granddaughter(All About Abigail on Facebook) and son on our first day and then again at the pool.  Then they were in the lobby with us a couple of times.  We ran into them in the elevator and they were on there way to meet a group of people from their group with Cerebral Palsy and they invited us to go along.  We had already ate and thanked them for inviting us.  They were going to a Mexican restaurant that we had already went to and neither was super impressed with the food.  Their red sauce tasted more like marinara sauce, but other than that I wouldn't say it was anything spectacular.  Maybe if we knew the language and really knew what we were ordering, may have helped!  It was an amazing experience to be in this setting because it is full of hope!  Parents are doing what they can and not giving up on their children, no matter their disability.  Next time we go back I want to take some refresher courses and at least be able to communicate with people, that's my goal!  

Now we play the waiting game and see what kind of work these cells do!  We are to do anything we can to stimulate Dylan's brain and in his case EVERYTHING will be stimulating!  I can't wait to see what progress we see in the next 6-8 months!