Butler State Park

It is such a beautiful day.  We drove up to Butler State Park to check it out.  Just beautiful!

Our Week

Saturday the girls and I went to the Down Syndrome of Louisville.  They hold get togethers five times a year and then summer camps in the summer for school age children.  (They have MANY other programs as well.)  I feel it’s time to get involved with this group.  The girls had so much fun!    I enjoyed sitting around and talking with the other parents who are living the same reality we are!  I also got to educate other DS parents on DS adoption (love doing that!!)

Sammi grew this sweet potato by herself!  She was so pleased!

Just love this picture!

The girls started Miracle Dancers again – well, again for Bell and just starting for Joy.

So exciting!  They loved it! 

Jason’s New Car

Jason has been researching this car for the past year.  He is so excited!  From his post on Facebook:

New car . Picked it up on Tuesday and been having fun all week. This is the 2016 Chevrolet Malibu Hybrid. Looking forward to many fun drives and saving on gas.

Labor Day Weekend

Becca wants everyone to know if wasn’t HER labor day (she’s not bitter…)

Turpins came for the weekend.  They, Jason, and my boss, Ron, went to Chicago for a Cubs game on Saturday – they loved it!  We went to World Fest.  We simply hung out!

May I?, of course!

My baby still fits in the sink!    Bella, the punk rocker!         Helping to make the Jell-O

Labor Day feast

Sammi and Sandi made a Hufflepuff Hogwarts Robe!  Sammi LOVES it!

Sammi’s purple sweet potato – she it grew herself!

Cubs Game

Jason has wanted to go to a Cubs game in Wrigley Field with his parents before they retired. He got his wish on Saturday.  They left Louisville early, drove up there, enjoyed the game, and then drove home.  He had a wonderful time! 

Ron, my boss and friend, got to go up with them – he is obsessed with baseball!

World Fest

Once a year they hold World Fest, the girls got extra credit at school for going – no complaints, though, they loved it!  Cultural displays and food – what’s not to love?

Neurology Appointment

Brother and I went to child neurology today. I learned that when a child has meningitis in the neonatal period, there are three possible outcomes:

1. Autism. Check

2. Hydrocephalus. Check

3. Epilepsy. Check (Our newest diagnosis)

I learned about SUDEP- sudden unexplained death in epilepsy. Kiddos with Autism are eight times more likely to die than kids with just epilepsy. Fun.

I learned that Brother is having focalizied seizures. Not sure how many or how often yet. The seizures he had in July were secondary generalized seizures.  The doctor won't know till more tests are run, but he's putting his money on the part of the brain causing the problems to be the brain bleed in the right frontal lobe. It is characteristically seizure producing (is that a word? ) when injured.  He said that iron (from the blood) is really destructive to the brain.

We are going to do a sedated EEG- which won't be an accurate picture, but they will get some readings from it. Alex will NOT tolerate the EEG, so we have to try sedated. 

We reviewed his bleeds- the one in the back left side caused his CVI. Then the shunt failure killed his optic nerve.

I had assumed that the one on the right, in the front, had damaged his speech center. Not so, that isn't where the speech center is located. So our speech delay is autism related not brain injury related.  That does give me hope.

As soon as the EEG is done, we will start him on trileptal. I will have to be sneaky to get it into him, but I'll figure it out. I have been hesitant to start him on meds, but he did say that developmental pediatricians sometimes prescribe this for kids on the spectrum that don't have seizures. In some kids, it helps decrease stimming behaviors. In other kids it causes aggression. We'll see what it does to my sweet boy. 

I love you so much Alex!!!  We'll figure this out, just like everything thing else.