Koba

A while back my cousin called me and told me about this Broken Brain Docuseries so I watched it and loved what they had to say, mainly about the Post Concussion part since that is where I feel Dylan's Autism came from.  There was two Drs that I wrote their info down about to look into in the future.  Well a couple weeks ago, I listened to a podcast from one of those Drs, Dr Chiu, and again liked what I heard.  He recently wrote a book, so I ordered it.  After reading his book, I contacted the office to see if they worked with children and they said they did, so a week or two later we were off to Cali to try his BrainSave Program in July.

He recommended we might want to stick around for 2 weeks but would let us know after the end of the first week.  So we planned a two week stay.  Brandon's parents and my parents were so awesome and took the other 3 with no question.

The first day, we met with Dr Chiu and he did an assessment on Dylan where he noted something about his eye movement and a few other things(unfortunately I am not getting to this blog post until 2 months later, so it won't be so detailed).  He said he felt he would be a great candidate for his program so we were optimistic that this could be an answer to some of Dylan's problems.  Basically for the next two weeks we went to his office 2-3 times a day to do brain boosting activities such as oxygen therapy, which Dylan hated so Brandon asked that we stop that after the first week and it made it so much better of an experience, Infrared hot sauna sessions, Laser Therapy, and then jumping on the trampoline.  By the end of the two weeks Dylan went from tip toe jumping to actually jumping flat footed, so that seemed to be a big thing, but we really didn't see any improvement other than that at that time.

They had suggested that we run a stool sample to see what was going on with the gut and the Dr had actually wondered if he has parasites.  Well when we went to collect the stool, we were a little surprised because there was definitely some thread like worms on his poop, we watched them moving and everything. Yuck!  We told the Dr about it and he was excited to see what the test revealed.  One month later they said they did not find anything in his stool, even though I know they were there, so who knows what happened to them.  We did treat him for pinworms and are monitoring that to see how that goes and if we find any more.  The stool sample did come back showing he has high calprotectin, his is in the 900's and should be in the 50's, ahhh.  He referred us to a functional medicine dr in Park City, but we didn't really get the best vibe from her so have chosen not to continue that.

We also saw Dr Chiu's wife, Dr Fallahi, who is a Chiropractor that uses Energy healing as well.  She did some adjustments on him while we were there and he seemed to really enjoy that part.  Between the 2 drs we were sent home with about 15 or so supplements and homeopathic remedies to help heal his gut.  We have been giving them to him for the past couple months but haven't really seen many changes.  We had a great experience but at this time can't say that it was really worth it.  I know we need to focus on our eating habits, but damn it that is hard when you have picky picky kids.  So other than a stressed out Mom, we aren't making much ground in that area, but I am determined to figure it out because that is the last thing we have not really gave a chance so wish us luck.

I do have to say though, the lady that works with Dr Chiu, Jenna, has an amazing recovery story.  The first day there she was just an ordinary lady.  The second day I noticed she limped a bit and figured she had twisted her ankle.  By Friday, she was in a wheel chair, when she told us she was a recovering quadriplegic.   You honestly would have had no clue, like us, had you seen her.  The next week Brandon asked her what her story was.  She was injured by a Flu Vaccine where she had a really rare reaction and it all but killed her.  That was 4 years ago and she started walking about 10 months ago when she started working with Dr Chiu and going away from Western Medicine.  Amazing.

This journey of looking for answers is not an easy one and it has uncovered a lot of stuff I wish I didn't have to know because a lot has to do with our food and our medicine and I just don't have the will power to really eat a lot of the stuff that you should be in order to help heal.  I don't know how to get my kids to eat it either, so where we find hope we also find disappointment knowing it probably won't work for us.  I know medicine has helped us in so many ways, but it is also hurting us too.  So I don't know what to do or which way to go and therefore we are stuck until I can get my act together.

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!