Strange Bites & Airport EMT

Ooooooh boooooy....

Let me just tell you about today so far....

I woke up bright and early this morning...or I should say I never really fell asleep because I knew I had to be up bright and early ...I got myself ready..blah blah blah.

When I woke Grayson up to get him dressed and ready to go I noticed an unusual bite on his elbow:

I went into slight worry mode... thinking it is just a rather unusually large mosquito bite or possibly a spider bite ..but noooo... not a spider bite..

As we drove to the airport and got to the gate I noticed the sucker had grown and looked even more like a bullseye ...and I immediately went into Mommy Panic Mode...oh yeah... I had tears flowing and everything... my anxiety was through the roof!

One of the agents came to look and drew around the outer perimeter and the time to to see if it would be growing more before time to board...and then the EMTs came...yes...yes they did.

I was worried! Don't judge me.

Grayson is nonverbal..so he obviously cannot tell me if he is feeling dizzy or nauseous and we already know he has an unusually high pain tolerance ...the only thing on my side at this point was that he didn't have a fever and he wasn't throwing up..but he did seem off...so yeah.. I was worried.

Well, the EMTs came, checked him out a little but they really didn't know anything to tell us or what to do and there was also a girl who would be on our flight (later to know sitting right behind me) who happened to be a Doctor...she was an Opthamologist but offered to take a look since she had done some time in Peds.

She thought it was not a spider bite but possibly a skin infection or a big mosquito bite and just said to take him to Urgent Care when we land but that he would be just fine to fly.

By this time I was starting to calm down and be okay and just wanted to get on the plane and get going....


But noooo....

A lovely lovely lady that was the supervisor of the agents of this particular airline was telling us that we may not be able to fly since there is a concern.

Her reason was, "if there is a concern we do not want something happening in the air and then have to make an emergency landing...that would put everyone at risk."

You mean...that would inconvenience everyone...

Now Now, I understand COMPLETELY that having Grayson fly and something happening in the air is not something we would want to happen, but not try to tell me everyone would be at risk for having to stop somewhere before our final landing place....lets just call it what it is and that you would rather us not fly just to be safe than possibly inconvenience everyone.

Anyway, the EMTs and the girl who was a doctor told the lady that everything was fine and gave him the green light to fly but she kept saying, "well thats our call"

She finally decided to tell us that yes, we could fly and then got very rude and told us to hurry up because our plane had been boarding for quite some time....Really?! ....There was NO ONE boarding yet. Every single person who was going to be on our plane was sitting down at the gate and when she started saying that everyone popped up with confusion and she just kept saying that WE were holding everyone up! At this point I started saying lovely things about this oh so lovely lady at a volume level that she may or may not have been able to hear me ;)

As we were going to board the plane, she of course had something to say about our car seat (it has a little attachment with wheels on it so we don't have to take a stroller...it is quite possibly one of the coolest things). We have flown with Grayson....I would say 30+ times since he was born...20 of them being with that cool car seat attachment and every time we fly with this particular airline they ALWAYS give me a hard time about it even though I tell them I fly all the time with it and there is never an issue...but she couldn't leave it at that...she stalked us...yes I am using the work stalk....she stalked us alll the way to the plane and told the flight attendants she wanted to make sure my car seat was okay...really lady? I just wanted to turn around and punch her right in the face!

She finally left us alone...but I mean seriously...give me an effing break...Not today lady... NOT TODAY!

We finally got seated and the lady returned...but not for us...she pulled a girl off the plane because she was wearing too short of a skirt! I have heard of this but I have never actually seen it to know it was true!

Anyway, we finally got up in the air and Grayson did great on the plane (as usual::knock on wood) and we have landed safely in Charleston.

I got him to the Urgent Care and it turns out....it really is just a bad bug bite....

Yes, I am that Mom that makes a fuss about a bug bite...but hey, if you had a kid who couldn't talk, know he has a high pain tolerance and had a "bug bite" that looked that like?!

On a cute note...the EMTs did give Grayson a cute stuffed hurt bear...too bad he doesn't care for stuffed animals :p

Now to enjoy the rest of the evening ...

Stairs :)

Pretty excited about this... while visiting my parents here in TX Grayson has decided to show off a new skill of being able to go down the stairs on his own :)

I took a video (of course):

Before taking this video he was even going down the stairs WITHOUT holding on to the wall but when I finally decided to go get my phone to take a video I wasn't pushing that as I wouldn't have been fully able to take the above video, and make sure my arms were out to catch him if he fell....SO....I took video of him holding on the wall as he went down which is just as big of a deal!

He will also go up the stairs the same way :)

Now remember, he is 3.5 years old... most kids I know his age are easily walking up and down the stairs like this or even better but Grayson has always just "crawled/climbed" the stairs and we have been able to occasionally have him do something similar to the above video we it usually requires holding his hand as well...so this is the first time I have ever seen him do it all by himself!

Go Grayson!

Summer Time in TX

We have been in TX for a couple of days now and will be heading out to SC with my family at the end of the week so we are officially taking advantage of summer vacation!

Grayson goes to school year-round basically. He goes the typical school year and then he goes 6 weeks in the summer as well with just over a 2 week break at the end ... however, Grayson will be playing hooky on his first few days of school as we calculated the dates of his break wrong as we were still new at his school when we booked this trip. Oh well! Let the fun begin! 

I love being back in TX..my entire family is out here (minus a couple of cousins and an aunt/uncle). I have a rather large extended family as well so it is so nice to come back and see everyone :)

It is HOTT here...who woulda thunk right? Hot in TX in August? Psssshhh. 

But at least we have my parents new pool to cool off in. 

This week we will just be hanging out, visiting my grandparents on both sides, visiting my cousins daughter in the hospital as she just had her 8th surgery for her Gastroschisis...sweet girl is only 2.5 years old and has been through so much but she is a fighter!... and then just playing around, some shopping and hanging out with some of my cousins. 

Grayson always has a blast when we come to visit. He loves my parents house, he just runs up and down the halls and they have quite a few TVs with very cool remotes and he just loves to run from tv to tv to tv with all the remotes :) 

He has also already taken full advantage of the little swing they have in the courtyard. We have spent a lot of time in the swing the past couple of days ...but not the pool so much... last time we were he LOVED the pool but this time... not so much, he really does not want to have anything to do with the pool.. which worries me a little for our beach trip coming up at the end of the week... but thats okay, right now.... we swing! 

I am not sure how much I will write this week as I will be busy taking in time with my family but I will keep ya'll posted if anything noteworthy happens!

Wagons and "Boys Best Friend"

As you have all been reading over the past few days, you know that Grayson has grown very fond of playing outside as well as a new found love of a shoes :p

Well he has added another.....the red wagon.

He loves being pulled around in it, whether it is just in circles in the driveway or all around the property...he loves it....and his best buddy Karat is never far from his side.

::side note:: Karat has also grown in his love of the outdoors. We have a pond in the back yard that he hasn't really shown interest in since we moved in a couple of months ago...but over the past couple days his interest has peaked and he has started to go further and further into the water :p


Anyway,

I decided to try to capture a few photos of the two buddies outside and thought "how cute would it be to get them both in the wagon" ...and well... it worked!

They have really grown on each other.

When Grayson was first born, Karat was not too fond of him at all and was always giving him the "side glares" that worried me but that changed a bit when Grayson was getting closer to his second birthday. Grayson really is a natural kid when it comes to animals...he absolutely loves them, however, he isn't rowdy with him, he just simply enjoys to be around them which works really well for Karat.

Karat loves to be around Grayson as well and has become quite protective of him as well and having Karat in Grayson's life has really brought him out of his shell and I think has really helped in a lot of his progress :)

For the Love of Shoes

A new development in the Curious Case of Grayson.... Shoes..... He loooooves his shoes.

I do believe this stemmed from wanting to play outside all of the time (which is still the case). He always wants to play outside, and to do that he needs to have his shoes on...so I think in his world, if he wears his shoes all of the time then there is always a chance he gets to go outside.

He doesn't like to wait either ....when he wakes up in the morning, before I can change his clothes...the shoes must go on his feet...the same goes for bed time... even after I give him a bath and have him in his pjs... he goes right downstairs and grabs his shoes and on they go (with my help of course).

Mind you, his PJ's are footie PJs so it looks a little something like this:

I can't help but smile when I look at that photo. So silly, but just so sweet. 

So yes, shoes are his thing lately and he gets very upset when you take them off of his feet. However, at night I have been able to say "night night shoes" just like I do with the iPad and he seems to understand and not get so upset. 

I don't mind this new development one bit, I think it is adorable and I love seeing his personality open up more and more.... its him... totally and completely him and I love it. 

Opthamology

Today Grayson had his Opthamology appointment.

The initial reason for the visit was to address Grayson's tear ducts -or lack there of.

Grayson had his tear ducts probed once when he was around 9 months old and again around 12 months... it seemed to help a little but turns out that he procedures did not do the job.

Grayson constantly has eye drainage which results in regular eye infections some to the point where he is bleeding from his eye...so as you can imagine, this had to be addressed.

Turns out Grayson does not have tear ducts. He will need surgery where they go in with a probe but this time use a tool that essentially is a tiny little balloon that they will "inflate" to create tear ducts for our little man.

Poor guy just can't catch a break...but hopefully this surgery will do the trick and he will have no further issues.


Aside from the tear duct issue, Grayson was diagnosed with Optic Nerve Hypoplasia which is basically the underdevelopment of the optic nerve. This can create problems with eye sight but it is hard to tell in a child as young as Grayson if it is in fact affecting his vision. The doctor said the best way to answer that question is to ask the parents, "Do you think your child has trouble with his/her vision" ... I answered no to this question because it truly doesn't seem so. Yes Grayson will get right up on a tv but that is because he likes to feel the static and likes to put his tongue on the screen...he does not do it in a sense to try to see better...its more a sensory thing. Otherwise he seems to have no problems with his vision.

However, they are still going to do a test called a VEP Test (Visual Evoked Potentional Test). With this test that will attach little things to his head to trace brain signals while having him sit on my lap and stare at a little tv that has an alternating checkerboard patter that changes in size, speed and direction.

We tried to do this test once before and it did not go well so we do not know the results. We were able to get him to cooperate for the beginning part of the test but once they needed to put a patch over one eye to test the eyes individually he completely shut down...so hopefully this next time around will go better than before.

The doctor asked if we ever had an MRI done and we have...when he was around 1 year old. I told her that it showed an under developed corpus callosum as well as delayed myelination in his brain. She was most interested in the under developed corpus callosum and said it makes her a little nervous because the corpus callosum runs directly in the middle of the brain and at the front of the brain you have his optic nerves... in the middle of the optic nerves and just below the front end of the corpus callosum is the pituitary gland... she is wondering if it is also under developed and has referred us to an Endocrinologist as she thinks it is a good idea to do blood work on Grayson to test for hormone deficiency.

I will not be surprised if we do find out he does have a growth hormone deficiency since he is "small" for his age and slowly but surely we keep finding out about different parts of his inner and outer workings being underdeveloped. Even though I will not be surprised, it will just be nice to know as well and if it is so, then we can think about growth hormones.


We probably won't have another update on all of this for a few months but don't worry... Updates will come as soon as we have any :)

Au Naturale

Today we had an appointment with a Homeopathic/Naturalpathic Doctor. It was the first appointment we have had with one. As I have said before, even though I am seasoned when it comes to Grayson's Chromosome Deletion, I am still quite the "newbie" with his Autism Diagnosis so I have been researching to no end and reading blogs of other parents who have children with Autism and have found an array of "protocols" and "treatments" and just things to try but and I am sifting through trying to figure out what I am comfortable with, what I believe in and what I think may actually help Grayson and his progress.

I am starting with Homeopathic medicine because it is natural and I do trust and believe in it and do not worry about it causing him any harm.

This was a pretty basic visit... lots of questions and to get him started the doctor has put him on 3 different supplements:

Glutamine Powder
Maxiflav Powder
HLC Mantience

The Gluatmine Powder and Maxiflav Powder are both for digestive support and immune support and the HLC Maintenance is basically a probiotic.

We are starting with these because Grayson has shown to have digestive issues since he was born and he also has a pretty poor immune system so we are starting him on these to get his digestive tract stronger and then at the end of September we will start him on some stuff that will help build his over all immune system especially since winter is on its way.

We are also going to take a look at his Heavy Metals a little later on and see if those results show he needs help with his heavy metal output.

I will keep updating with each visit to Dr. Tracy.

Nutrition Appointment

Today was Grayson's first appointment with a Nutritionist. 

We originally made this appointment because Grayson has had a very limited pallet until just recently. Basically all he ate was fish sticks along with snacks like graham crackers, nutrigrain bars and granola bars.

Now his diet consists of:

Eggs (he LOVES eggs)

Cereal 

Toast/Breads

Fish Sticks

Chicken Nuggets

Nutrigrain Bars (Blueberry and Apple Cinnamon flavors)

Granola Bars

Fig Newtons

Graham Crackers

Yogurt (Strawberry and Blue Berry flavors)

His usual Almond Milk

Grilled Cheese

Cheese Quesadilla 

and now with the help of his teachers at school we have been able to get more fruits and veggies into his diet --- in pureed form but at least we are getting there. 

He will eat pureed forms of just about any fruit and vegetable and especially loves when they are fruit and veggie mixes like "peas, pears and spinach" which is one of his favorites.

I was still slightly concerned with what the Nutritionist might say since that still doesn't seem to be a lot of what most children his age would be eating.

I was very pleasantly surprised at what she had to say!

She said he is doing great! She pulled up all the brands of the foods we give him to check on their calories, fat, sodium...etc and said even if it seems like a "limited pallet" that what he IS taking in, are all good things. He doesn't drink juice or eat chips and doesn't eat fast food...etc. .... and I have made sure of that since I know he doesn't eat a lot of things I try to make sure what he DOES/WILL eat are things that are good for him and not empty carbs/calories and unnecessary sugars.

Okay, circling back around to the Nutritionist.....

She said everything looks great, but as we start to see him really sticking to the fruit and veggie purees, to try to make them ourselves at home instead of buying them in the packets (which I was planning to do once we saw which ones he was really taking too and which "mixtures" he liked, that way we KNOW its truly organic and no preservatives and unnecessary "stuff" in it. 

She also said to try to make him some sweet potato fries/chips...which should be easy because we make those for ourselves often along with making thin slices of egg plant as well I think he may like if we can actually get him to try it :p

She said when wanting to try a new food with him at meal time, to offer him the new food first...just simply put it on his tray and give him about 10 minutes and see what he does with it. If he doesn't like it and shows after 10 minutes he is not eating it, to then allow him the preferred food which is something they do with him at school = "First This - Then This" and we try to do it at home as well. 

So yes, all is good on the Nutrition front and she is one doctor we do not have to go back to unless something changes (knock on wood please). 

It has been a LOOOONG day.

Didn't get home from everything until after 7pm so dinner was late and getting little man to bed was even later.

Goodnight :)

Loves

I can't help it...but I just have to say that I love this cute kiddo SO darn much :) 

Nananananananananananananana BATMAN!

We decided to start changing Grayson's room into a "big boy room" and we are going with a Super Hero theme. It seems fitting to us as Grayson is a Super Hero in our eyes.

We are going to use ALL kinds of Super Heros in the room/decor. We already bought a Batman Sconce to go in his room.

We got an awesome surprise today from Nana to add to the Batman portion of his room...a package with Batman stuff in it! A Batman Shirt, Mask and of course a CAPE!

Grayson actually wore it all around and it was so cute because when he runs, he sticks his arms out/up/infront of him and with it cape on and blowing it looked like he was trying to fly :)

Thanks Nana!

Communication Book

Grayson's school has started to make up a Communication Book for him to use as the starting point to him being able to communicate in ways other than verbally (since he is non-verbal). Once he is older and shows he understand the Communication Book very well, he will move on to Communication Devices like typing and Communication Boards. We have the AutisMate app (see blog from earlier) which he is getting the hang out and is very much like his Communication Book, but the goal in his future is to get him to use a Communication Device like AutisMate and others that he builds full sentences and is able to ask and answer questions with it.

Anyway, here is a glimpse at his communication book:

Can I just tell you, how EXCITING it is to see him use this thing. Something so simple but brings enormous amounts of joy as it is a window into what he is thinking and being able to communicate with him!

So for those that do not know much about the Communication Books (and I am not expert myself) here is what we have learned from his teachers and from watching Grayson in action:

The book his teachers made is a small hard binder and inside it has several pages basically made up of the thin plastic dividers. On each of those pages are strips of velcro with small photos (like shown above) of either toys, actions or emotions. You can either place things on the front to give him options to choose from (like a choice of 3 toys or actions) and he is to pick one off and hand it to you.. Or .. He can choose different photos from the book on his own and place them on the cover (shown here) which is to try to tell us what he would like to do.

He still has a ways to go and sometimes he just places things in weird orders (but you still get the clear understanding on what he is trying to communicate) and occasionally he will just go on a free for all and just place as many photos as he can on the cover but then after a few moments he takes them all off and then only places the ones he actually wants to communicate on the cover.

This is SO exciting because there are the first steps to him being able to really communicate directly with us! I almost cry each and every time he is clear with the book.

I could not be more thankful for his current team of teachers and therapists and all of his former teachers, therapists and coordinators from before we moved. We would not be making the leaps and bounds that we are making if it weren't for the entire support team we have always had!