Leaving UAA

We decided to put Dylan back in the school district and leave Utah Autism Academy.  It was a hard decision because we have loved that school and love knowing he is going somewhere that he is loved.  The only problem I have with that facility is that they do not focus on Academics at all.  So in the end, I just couldn't let him go another year without getting the education that he deserves.   We loved UAA but it was time to move on.

On his last day there, I felt ok about the decision but when I went to pick him up they started saying how they would miss him.  John, the main ABA guy came and told me he wanted to hear about his future whether it be in 3 days or 3 years and that I was taking one of his favorites away, but he understands we need to do what is best for our family.  Then I look up to see them bringing Dylan out with about 3-4 people and they all start hugging him, so then I started to feel a bit sad and doubt our decision.  They gave me a book they had made for him and I put it in the car.  On the way home I decided to open it up to see what it was all about.  Well I happened to flip to the page of Dylan and Jake and I started bawling.  Seeing the happy look on his face and the connection they had.  Jake was the first person I saw Dylan really connect with there and so I always was excited to see when he worked with him.  Linda(not in the book because she left the month before) and Hannah(I think she has also left) were my 3 favorites.  Linda told me she cried when they put Dylan in a different group and her husband told her to request working with him still so she did.  She also says she wants to name her future son Dylan, we are now Facebook friends, so it will be fun to see if she does, ha ha.  Not only did I take Dylan from a school he loved but I took him away from many people that love him.  I sure hope we made the right choice, because wow that was hard.   Here is the book they made for him:

He is now going to Foothills Elementary and they have put him in an Autism Cluster Unit with Kindergarten and First Graders.  Since they are going off of his IEP from preschool they want to do a 45 day trial and then will meet again to come up with his new IEP and see if that is a great fit for him.  I have been impressed so far because they really include his class with the whole school.  They have 5th Grade Buddies once a week and then 4th Grade Lunch Buddies daily.  I am excited to see what this year brings and hope we have made the right decision for him!

The School's Favorite

Everyday I like to look and see who has worked with Dylan for the day and then when I don't see my favorites(the ones that seem to really connect with Dylan which would be Linda, Hannah, Jake, and Bailey) I worry that they are no longer there.  Then I see them and am sad they haven't worked with Dylan in a while.  Well the other day, Linda brought  him out and was so excited she got to work with him.  She told me she doesn't get to work with him anymore because they split up the group and she is on the other group.  I was so sad.  She told me that she went home and literally cried until her husband asked what was wrong and told her to talk to the director to see if she could work with Dylan once in a while.  Which is why she worked with him that day.  I told her she and the other 3 are my favorite and I would love her to work with him too.  If there is a way I could request then I would but I don't want to interfere.  I told her if she wanted me to I would though, because I seriously love her. She said Jake and Hannah are also in the other group and Bailey is at UVU.  I am so sad because they are my favorite!  I know all the people are great and all but it bugs me that it seems once Dylan gets close to some they have a new group of employees and they are the ones that work with him.  I think he should get to work with some of the people that have been there a while to.  I guess we'll see how it goes and  hopefully Linda gets to work with him more since she voiced her sadness.

Dylan is a great kid and EVERYONE loves him!  I am so thankful his personality shines through and everyone sees him for who he is!  He has been super happy and more engaging lately.  His language seems to be progressing, just very slowly.  I need to work with him at home more and get serious about the food changes and maybe with my help he could take off.  I can't expect everyone else to help him, if his own Mom doesn't have the time. I have the desire, I just need the motivation and about 50 of me between all the other kids needs as well.

Swimming Lessons

Dylan's school decided to have 2 sessions of swimming lessons!  Lucky kid, he loves it!

Update

Just a small update on Dylan!  He is doing amazing!  We have had so many good days these past couple months, minus destroying 3 bathrooms in 5 minutes the other night(toothpaste, soap, toothbrush down sink, etc.), and we are loving it!  He has not  peed or pooped in his room in a couple months(knock on wood) and we even got rid of his toilet, like threw it in the garbage, it no longer exists here!  That is a big deal!!!  He has been so happy and engaging lately, but he still likes to be on his own to watch his shows so we need to figure out how to get rid of that and fully engage with him but it is a work in process!  He has spring fever and has been going out and playing on the swing set a lot!  He is trying to communicate with us more and I love it!  He has gone in stretches of sleeping in until 7 but then we have stretches of waking up at 5, but either way he is sleeping and that is good!  I hear a lot of kids on the spectrum do not sleep, and woah I just couldn't do that, so I am thankful for sleep!

My kids have been sick pretty much the past couple months and Boston finally got diagnosed with Strep so they put all the kids on Amoxicillin.  I was actually a bit giddy about it because I have wondered about PANDAS with Dylan, strep throughout your body attacking the brain pretty much, and so I wanted to see if we see any improvement while on the medicine.  He has been very happy and more engaging since, but nothing mind blowing, but still something to watch.  Dr Goldberg wants us to have him tested for strep 24-48 hours after medication is done to make sure the strep is gone, so we'll see in a couple days!  So I just wanted a quick update because I haven't done anything for a bit and here is a quick update in the 15 minutes I have to spare!

1 Year Speech Assessment

Dylan recently had his 1 year speech assessment and I have to say I left there feeling amazing!  I know he has made some improvements but being with him everyday makes it hard to see how far he has come in a year.  He is really starting to make a lot of vocal sounds and we are focusing on getting his tongue to move so that he can place it in the correct location to say different sounds.  The speech therapist seems to be really impressed with how far he has come and where he is going, so that makes me one happy Momma!  And don't forget, proud as heck because he is working so hard!  We are focusing on consonant-vowel-consonant sounds and he is doing great!  He really follows along in Speech and is just doing amazing!  Here is his report:

UAA Parent Meeting

I met with Dylan's school for his 6 month progress report.  It is a bitter sweet meeting every time because I get to hear how awesome Dylan is and how much they love him and his cute little personality and that he is improving... but it is also pointed out at how far behind he is for his age too.  That can be a tough pill to swallow but I have decided not to focus on the bad and instead to celebrate the good!  The only skill he is right on target of his age group is his gross motor skills, so yay Dylan!  Too bad for him is because of the head trauma this Momma won't be letting him play any high contact sports anytime soon, if ever, aaaahhh.  I know but I just can't chance it causing a regression again.  But I know he has much more healing to go before we even get to the "if" he will ever play.  They said he is  making great progress and they are very pleased with how far he has progressed in this past year.  They said that his vocalization is getting really good and they are seeing so much more trying out of him and we are too.  He has met several of his goals such as responding to sounds near and far, giving up requested items(sharing), Rolling and catching, requesting items with his AAC device(something we need to use at home but haven't tried because it overwhelms me of where to begin setting it up),  and imitating play!  I know they are all simple goals but he is improving and that is all we can hope for.  He really does seem to be trying harder on talking so I hope and pray that comes soon!  Here is his progress reports:

We really love the people that work with him and know he is in good hands here.  I just wish they focused a little bit on education, like just the basics is all I ask, but they don't and so I don't know that this will be a long term solution for us.  I know he is a smart kid and he deserves an education too.  They have definitely pushed Dylan and got him to where he is today, and they deserve the credit.  Lately some of the updates I get is that he is sitting through the whole 25 minutes or so of story time at the Library, we all know I can't get him to sit for 2 minutes so this school has its very good points and I don't regret sending him here at all.  Now that he is getting to the age of school, I do think he needs to learn as well.  So we will probably get him back in the school system next year, but the credit of him learning to sit through lessons will go to UAA!

Speech Therapy is going pretty well and the therapist seems to be impressed with the progress he is making as well.  He has been saying his vowel sounds really well lately and even repeating many of the things she asks him.  Pam had us order this Speech Buddy tool to help him learn the placement of where his tongue needs to go.  She is focusing on the letters that you need to put your tongue behind your upper teeth right now because she notices that is where he struggles.  She said a true sign of Oral apraxia is that when having him stick his tongue out he also moves his head, so if we can get his tongue working correctly she thinks we will be at a great starting point and could see him blossom from there.

Dr Goldberg has changed his Lexapro medicine to Celexa and had us increase that from 1 1/4 tablet to 1 1/2 tablet last week.  He does seem to be a lot happier and more engaged lately!  I just need to get myself out of this long, long, burn out mode and start working with him!  I know we are a major part of his improvement but dang I just can't get myself to put in the work lately, with him or his younger sister that could use the help with her letters and numbers.  We also need to really focus on EATING, which is another hard part for me and I have no idea how to really enforce it, but that is my next goal.  We have to change this families way of eating and we need to do it now, so wish me luck!

We are really proud of Dylan and know that his life is a daily struggle but he is doing amazing at it!  I tell him everyday that I am a lucky Mom because no one else gets to say that he is their son and I am the luckiest because of it!  We make a great team and we will conquer!

Panama Round 3!

We decided spur of the moment to try stem cells one more time and this time my Mom came with us.  The sucky part is that almost 3 of us can fly out of Vegas for the price of 1 ($430 compared to $1130) so on top of the already long journey we add on to it, but saving money is worth it, right?  Since I don't know the language as good as I should, I get nervous really exploring so we stick to  the area that we stay for the most part.

We did go to the Panama Canal and just missed seeing a cruise ship go through but did see a smaller cargo ship go through.  Dylan was not used to the heat and humidity so he was not really behaving too well so I tried to let my Mom experience it a little bit.  We were going to go on a tour where you go to the jungle area and monkeys climb on to your boat, but the weather was not the best this time and then they cancelled it because they said the monkeys don't come out in the afternoon as often.  That was probably for the best because I don't know if Dylan would have sat on the boat as long as we were going to be on it.  November is their rainy season and that was very true this time around.  We had a lot of rainy weather!  Other than that our exploring was the local mall and then we took Uber to an even bigger and fancier mall once.  I almost forgot, we did make it to Casco Viejo this time, a really old part of Panama, to look around.  They are in the middle of remodeling the area and making the old look new but in an old way.  I think basically for tourist and to draw them in.  The sad part about that is the buildings, if I remember right, have basically been passed down from generations but with this rebuild I heard it is really expensive so I am sure it has pushed a lot of people out of what has always been theirs.   It is really fun to look at all the architecture though! It was fun having my Mom come along and share this experience with us!

They have changed the procedure a little bit since we went the last time and it is now very convenient because you stay at the same hotel that the office is located at.  We were able to meet several different families there for Autism and hear their stories.  When we first got off the plane and went to the lounge a lady could tell what we were there for because Dylan was bouncing off the walls.  Her little boy, Truman, was coming back for his second treatment too.  She said last time he could only say one word and now, I honestly had know idea he was on the spectrum.  He was calm and talked.  We saw them eating breakfast throughout the week and talked a bit.  We met a family from California that was there with their son, David, who is 14 and here for the first time.  They have done several different things with him prior to this.  They were our favorite and we will be keeping in touch with them.  David has a great memory and when we saw him at breakfast the second day, my Mom thought about saying Hi to him but we weren't sure if he would remember.  We started talking to Ivana, his Mom, and he came running up to my Mom and called her by name and gave her a hug.  He is a funny kid and we just loved him.  He quizzed me pretty good on my knowledge of the Disney Princesses and Villians, but I don't know if I did to well, ha ha. I have spoke to his Mom since we got back and she is noticing more awareness in several different areas so far.  There was a couple different bellboys that we got to know, Luis and one other but I don't recall his name.  They were always quick to come talk to us and just loved Dylan.  We saw several other patients eating breakfast that you could tell was here for different reasons like MS.  I enjoyed this set up more so you could actually get to know people!

As for the treatment,  Dylan is completely different since the last time and no longer requires being held down!  We saw Dr Diez again this time.  His labs looked good except allergies were a little triggered.  Last time he got 36 million stem cells, this time with the new protocol he got 60 million (60.6 to be exact)!  The infusions went well except the second one.  He got a little squirmy but nothing to bad so they had to poke him a second time.  When they did that in the wrist, for some reason blood would come out but could not push anything through.  They tried again in his other arm but it wasn't working.  They brought in another nurse to help out and was able to get it in the 4th time.  They said that was really strange and had never seen it before.  After that because they felt bad and didn't want to go through that again, they just had the 2nd nurse assist them the rest of the week.  The last day they almost had it all in but then his vein started refusing it because that was the one we used most of the week, because it is his best, so they had to poke him one more time to get the rest  in.

Our second visit, first infusion, we had a different Dr and I am glad we did because he mentioned the APEX clinic in Florida that he has seen good results with from some of his patients.  He told me there was a patient of his that had come to the clinic a whole bunch of times and he was starting to think that they weren't going to get any further with him, but he came back and was making small sentences, so he asked the Mother what she had done.  I had an idea who he was referring to because on the Facebook group there is lady that has take her son like 10 times so I wondered if that was who he was referring to .  He said this clinic has called Panama and wondered what their protocol was because he has seen more improvement of his patients that have also gone to Panama.  I am obviously interested in pursuing this option more!  I called this clinic and found out it is a personalized daily program that helps reconnect neurons and is used with a lot of stroke patients.  He gave me a number of a mother to call and she said this is the best treatment she has done so far.  She has been with them for 1 year and plans to keep with it for 3 years.  The funny thing is that this is the same patient that I am pretty sure the Panama Dr was talking about.  It was good talking to her personally and i found out she has gone to Panama 13 times, wow!  She said each time they saw improvements, but her sons gut and immune were in a really bad place so like Dylan it has been more internal improvements.  So now I really want to give this Apex a shot! Maurice that I spoke to there said, with the info I gave him about Dylan, that he thinks we would be looking at a year of treatment.  Great, right?  That only comes with a almost $40,000 price tag!!!!  I am determined that it is going to happen though so I may be looking into finding a job soon.  Problem is, it would have to be night because between getting kids to where they need to be, then I would be working with Dylan and this program for an hour in the morning around 9-10 so a day job really wouldn't work, so we'll see, that just may be my new adventure!!

You meet amazing people.  This is Ivana throwing Dylan into the pool.  Her and her husband, Tex, were amazing!  They were here with their son, David.

David and my Mom

Lab Results prior to stem cells