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.