So, I forgot I had a blog! It's been a few years...
We have now lived in Illinois for 5 years! Time has flown.
In that time, there are days I spend time with Josh and think "Autism? What Autism?" And then we have days like today... when I have reminders that stuff is just not right. We have our routines, and as long as we stick to them, we are golden. But since when has life kept it's routines?
One day a week, I drop Josh and a friend off at school early so that they can attend chorus. Unfortunately, Josh's friend was not well and I had to send him by himself. As he opened the van door, he grabbed his bag, then began wandering off in the opposite direction of the school. I kept calling out to him, but he kept going. The thought of him wandering off is a constant fear I have.
Among the first things we looked into after we got settled in our current home was getting J a service dog. There are so many wonderful reasons for getting Josh a constant companion, but I feel like this blogger shared more articulately than I ever could:
http://www.huffingtonpost.com/shanell-mouland/but-what-can-a-dog-do-for-someone-with-autism_b_9302386.html
It took us 4 years of applications, referrals, home visits, and appointments, but I can finally say that we are scheduled to pick up Josh's service dog in just a few weeks! We're a wee bit excited.
In addition, I just needed to share that in the midst of all of this, God has been good. Every obstacle we have hit, has been met. The school has been working wonderfully with accommodating us (fingers crossed). In addition, we needed to raise $1000 to cover the cost of our dog handler training. In less than 24 hours after my husband created a GoFundMe campaign, our financial needs were more than met. We actually are still accepting donations, but now that are going to a savings account that we will use for the dog's ongoing care and veterinary bills. If you feel led to contribute, here is the link:
https://www.gofundme.com/fjr2qjvs
Thank you!
Tuesday, March 1, 2016
Saturday, February 19, 2011
Diagnosis: Seizure!
About a week ago, we went to see a new neurologist.
Taking into account my history as an Epileptic, Josh's Autism, and the Nodules with the weird seizure discharges that were found on his last EEG, the Neuro said there was too much overwhelming evidence that he had Epilepsy to be ignored any longer. So, even though one of his full blown seizures on EEG, they were willing to go ahead and start treatment. WIN!
Oh what a fresh set of eyes can see...
Friday, February 26, 2010
Reader's Digest Version of Josh's Neurology
Currently, we are working with the pediatric neurology team at Strong to try and pinpoint the location (in his brain) and kind of seizures Josh is having so that we know best how to treat them.
Over a year ago he had a 20 minute EEG that showed zip.
Finally, in December, with Medicaid finally moving along, we were able to pursue a 24 hour EEG for him. This revealed that he had activity in his brain during stage one and two sleep.
Last week, we went in for an MRI under sedation. That is a story in and of itself. Anyway, under full sedation nothing happened. However, they DID discover that he had nodules in his brain. They don't know what the significance of this is, yet.
So, I called my neuro and asked her to release my MRI and EEG records for comparison.
Now, the next step is to admit Josh to the hospital for a sleep study. Or as we call it, "Mommy and Joshie's sleepover party in the hospital with NO baby brothers allowed!"
When I know more, I will share more. But it feels like the more we learn, the more questions we have. It has been a very frustrating battle. All I want is my buddy functioning as best his can!
Over a year ago he had a 20 minute EEG that showed zip.
Finally, in December, with Medicaid finally moving along, we were able to pursue a 24 hour EEG for him. This revealed that he had activity in his brain during stage one and two sleep.
Last week, we went in for an MRI under sedation. That is a story in and of itself. Anyway, under full sedation nothing happened. However, they DID discover that he had nodules in his brain. They don't know what the significance of this is, yet.
So, I called my neuro and asked her to release my MRI and EEG records for comparison.
Now, the next step is to admit Josh to the hospital for a sleep study. Or as we call it, "Mommy and Joshie's sleepover party in the hospital with NO baby brothers allowed!"
When I know more, I will share more. But it feels like the more we learn, the more questions we have. It has been a very frustrating battle. All I want is my buddy functioning as best his can!
Welcome to my world.
So, Jake has been bugging me for a while now to start a blog to document and share my journeys in being a mom. I know that doesn't sound very exciting. But there are a few things about my situation that make my happy little family unique and interesting.
For starters, I have Epilepsy. This makes my daily life a bit of a challenge. The docs told to forget having kids, so I pretty much did.
And then there was Joshua. Born 10/30/05. He has a diagnosis of Autism and Epilepsy, as well. He is the coolest big kid I know. We face a LOT of interesting experiences thanks to him!
Then, well, we moved into our new house, 2 years ago, content with our situation and where God had put us, only to find out a week and a half later that I was pregnant with TWINS. Identical twin boys, Isaiah and Elijah, born 5 weeks early on 2/2/09. Izzy was born with tortocollis and developed plagiocephaly as a result. He got to wear a cool cranio-molding helmet for several months and receive physical therapy, but is doing well today. Being born early created a different set of problems for Eli. We have been in and out of the doc's more times than I can count with respiratory problems.
Today, we are a strong happy family, pushing through our struggles as best we know how!
Welcome!
For starters, I have Epilepsy. This makes my daily life a bit of a challenge. The docs told to forget having kids, so I pretty much did.
And then there was Joshua. Born 10/30/05. He has a diagnosis of Autism and Epilepsy, as well. He is the coolest big kid I know. We face a LOT of interesting experiences thanks to him!
Then, well, we moved into our new house, 2 years ago, content with our situation and where God had put us, only to find out a week and a half later that I was pregnant with TWINS. Identical twin boys, Isaiah and Elijah, born 5 weeks early on 2/2/09. Izzy was born with tortocollis and developed plagiocephaly as a result. He got to wear a cool cranio-molding helmet for several months and receive physical therapy, but is doing well today. Being born early created a different set of problems for Eli. We have been in and out of the doc's more times than I can count with respiratory problems.
Today, we are a strong happy family, pushing through our struggles as best we know how!
Welcome!
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