Suites and Treats

This year we were invited to the Iron Pigs Suites and Treats through Miracle League. Area buisnesses decorate the viewing suites at the stadium and provide food and treats for special needs kids and their families. 

It was a very impressive set up. Rooms were decked out in different themes: pirates, superheroes, pixar's Inside Out and Up

Undersea, Star Wars etc. One room that Gracie likes was decked out as a campsite complete with a fire and s'mores. The folks from these places  put in a lot of time and effort for these kids and it really shows.

Joy really liked the Peeps mascot!

It was a little overwhelming for Grace but she caught on quickly. Her new favorite thing is getting her face painted. Something tells me that I'm going to have to get into face painting soon.

Then after all the good treats that were handed out - what was Gracie's favorite thing?...

A paper plate she snagged at the pizza station.  You gotta love it! She's one of a kind!

February in October

I'm You know how they have Christmas in July sales and events? Well, I am having February, my most hated month, in October and I don't like it at all. 

First there was this:

 

Joy was home sick most of this week. Sick and sick at heart- in the middle of middle school muck that mom can't fix.

Then there was this :

I called called to school on Thursday because Gracie threw up. She NEVER throws up so I knew it was going to be bad. Twice at school, 3-4 times at home- and then she asked to eat( takes after her father- ugh) then she did it again. 

So we took her to a GI doctor on Friday even though she was still feeling funny but she did great and the dr was awesome! He actually DID SOMETHING For her. She has to get a CT scan but he's ordering a SEDATED one so we don't have to do it twice!!! He gets it. 

He acknowledged that she was different and that it was ok. Not one of the 4 Drs we were to in the last four weeks did that. It's so nice to find someone who actually gets that you are there for a reason.

Then there's this:

SPOILER ALERT: the following may be disturbing to some viewers: ( don't say I didn't warn you !!)

I told you not to look. 

I woke up at 1:30 to Chris yelling for help. He went up to bed with a queasy stomach and he must have passed out and hit his head somehow. He said that his head and neck hurt so I took him to the ER while Aunt Peewee came over to stay with the girls. We were there for about 3 hours. At one point he started to pass out again and it got a little scary because 3 people came in. Then about 20 minutes later when he had just calmed down they came in and said ok all the tests came back ok - you can go. Now. Right now. So we went home.and he got sick on the way home. Arghhhhhh!! 

So he spent the day in bed -- thinks he's going to Pittsburgh tomorrow/ yeah right.  We probably won't even make it up to pappy Angelo's tomorrow. 

So I'm done with October. 

Bring on the Christmas!!!!!

Stressed Out

 

From Twenty-one Pilots song "Stressed Out"

Wish we could turn back time

To the good old days

When our momma sang us to sleep

Now we're stressed out"

Above you see Grace having a meltdown in the car while we were waiting for my Mac to get fixed at the Apple Store. We had been in the book store until Grace decided that she wanted an expensive pop up book that was in Spanish no less. She had to have that book and no other . 

Tears- throwing herself down- crying- 

This has been the norm since August when we started seizure Meds. Then when school started it continued and got worse. Not has bad as when she first was on Keppra before school. She was really not herself on that drug!!

She has three new factors that seemed to have thrown her upside down .

First the medicine; Second, full days at school; Third , stress ( from going to so many doctors, being in school etc.)

We thought we had a Great Leap Forward after completing Chew School. Since the epilepsy diagnosis it seems we've taken two steps back. Some days are really good but the bad ones are really bad.

I know some of the behaviors are just childish tantrums- but I think the face above has pain in it. 

But I don't know- because she can't tell me what is the matter. With the new Meds she can't say "this makes me feel funny. " "I don't feel good." "My tummy hurts."

It seems like she has to deal with so much already. I'm gonna say it:

It's not fair that she can't talk. 

In the words of Malka Bialystoker from the book "the Ice Cream 

Queen Of Orchard Street" ( a great read btw) " So sue me, darling"

Sad Face.

It's been a rough couple of weeks. 

Today I hit the Oreos before noon. 

---

Today was the second visit to the new pediatrician in 2 weeks. That would make it the 4th Doctor visit along with an ER visit and an x-Ray-- in 2 1/2 weeks.

--

This is me today -- after Grace silently trashed the living room-- while I was looking up new pediatricians in the kitchen. Here is a closer look at the aftermath of Hurricane Grace

If u don't want all the gory details skip to the end😖

It started as a possible Urinary infection because of 2 accidents at school( Grace never had accidents)- so I took her to 

Patient First and they gave an antibiotic. Then the following day/ I misunderstood her neurologist and took her to her old pediatrician - who did nothing. Then I got her into a new pediatrician that the neurologist recommended where she had  more accidents who did nothing but clean her ears. So now we have three urine tests that show "something" and all get sent off for cultures that show "nothing". I kept her home the second  Monday in a row because I thought she had a temp. She went to go and was doubled up in pain crying - she never does that- I'd give it an 8 or 9 on Baymax's pain scale -- so I took her to the children's ER-/ where we waited 2 hours for a Dr to do the same thing- say " there's something in the urine test" so we will send it off for a culture!!!! 😵😵😵

Add into all this 4 different seizure Meds in two months and all the effects they could possibly have!😝😝😝

It's been a long two weeks.

Now I Checked with her developmental pediatrician thinks it might be gastrointestinal so we got the new ped to get her an X-ray - they said they'd send the scrip over to diagnostic so we could just go there the next day. 

Guess what? No paperwork -AND the intake person at LVHN had to call them TWICE to get it. So we finally get the the X-ray, easy peasy. It comes back negative--ok. 

This morning she had pain again. So we go back to the "new" ped. today. Grace had 3 accidents at the office. She has 0 accidents at Home! I tell the Dr this and the last culture came back negative and she STILL suggests a urologist!!! I'm feeling that if I tell her that Grace is from another planet she will probably say yes we'll watch it and see and maybe go to urologist!!!!! 

Ok the ending:

It's hard to find doctors that fit your needs. It's near impossible to find a doctor that gets your 7 year old autistic- non verbal- epileptic child. 

Frustration. Not being able to help your child when they are in pain. Your child not being able to communicate to you what is wrong. 

Frustration. 

Cookies.