8 Month Since Last Post!!

It has been 8 months since my last post

6 months since our last seizure!!! 

Happiest news I have ever been able to announce!! 

So much has happened since I wrote about my hate for developmental assessments! Nothing really has changed there, I still dislike them however Slade has developed a lot since his last seizure on October 24, 2013.

Since his last seizure he has learned to crawl, stand while holding onto furniture and walk while holding onto something for assistance. He has walked 4 steps to his papaw without any assistance but I think he is scared to do it again!! He will get it though I have no doubt! Love my little man!

We just walked the Step Forward for a Cure 5K in Mountain Brook, AL! We raised over $5,000 for the TS Alliance and I was so honored to have so many people come together and help us with fundraisers, make donations, and even walk with us this weekend! If I was ever in any doubt that my family, especially Slade was loved all of that was put to rest this weekend! 

Our next appointment is June 30-July 1 where he gets his EEG and his second MRI.  This MRI will show his fully developed brain and what type of tumors (or tubors) we are working with.  I am hoping that we will get great news that everything is small and there is no growth! We will see!! This time we have decided to stay an extra night and take Slade to the zoo.  He has never been and will hopefully be old enough to have a good time! 

I would love to use this blog to interact with others who have tuberous sclerosis, have children with tuberous sclerosis and to share our story with others who are newly diagnosed or others who are interested.  When Slade was diagnosed the first thing we were told was to not get online because we would see a lot of negative things.  Yes, there are a lot of negatives that go along with this diagnosis but there is a lot of love that goes along with that and I want to share our experience!

Let's Talk Developmental Assessments

POINTLESS...

Yes, you read that right.  I believe them to be absolutely pointless!

Slade has had two in his lifetime.

One at six months which was a complete dud. 

Then one at seven months which was a big hoorah!

Let's talk about that first development assessment at six months.

It started off as a normal day.

Everything was right in the world. 

The happiest baby around was in my arms... playing.

That was until...

(da da dum)

The psychologist wanted to play games with him during lunch/nap time. 

BIG NO NO!!!

HAVE YOU EVER TRIED TO PLAY WITH A BABY WHEN THEY ARE EITHER:

1. HUNGRY

2. TIRED

I BET THAT WAS A VERY FUN TIME IN YOUR LIFE!

Needless to say, Slade played very little and cried a whole lot!

Did I mention he had a good 2 hour drive for this assessment?

Geez mom, what were you thinking! 

The test results were not revealed to us because "he did not get a good reading". 

Now... Let's talk 7 month developmental assessment!

The day started off with a happy baby. 

The day ended with a happy baby. 

A delay in language and self-care.

How many babies hold their own bottle at 6 months anyway??

Much less feed themselves! 

Nonsense I tell you!

(All of you with einstein babies, calm down. Hooray for you but it just isn't happening over here okay?) 

What was the difference might you ask?

We were at home and we scheduled around nap time and bottle time!

I would suggest that if you have to do a developmental assessment at any time in your sweet babies life that you do the same. If you do it during bottle/nap time and are anything like me... you will be upset leaving. Very upset!!

Seizures Go Away!!! We Don't Want to Play!!

July 5, Slade had his first infantile spasm.
On this day, I will go ahead and say that my world was turned upside down.
I knew this could happen but we hoped and prayed that they would stay away.
Slade had just turned 6 months old.

We were told the best chance of "normal" development would be to keep the seizures away until Slade was two years old.
It didn't happen but at least we caught the first one.
We started Sabril the following Thursday.

The first three days of getting the pill in his system, he continued to have the spasms.
Watching him you could tell the medicine was beginning to work because the spasms were weakening.
There was an immediate progression in his development!
He started rolling over, babbling more, and and concentrating on objects and (in my opinion) LEARNING!!
I loved every second of it! It was the greatest month of my life!

Until he had a spasm in his sleep the night before we went to the cardiologist and ophthalmologist.
It must have been a break through because there have not been anymore but talk about shaking your world up!!
Speaking of the cardiologists, we had normal heart function despite the numerous rhabdomyomas... (benign cardiac tumors), his largest had shrunk in size by 3 points, and the doctor does not want to see us again for two years!!
Regardless of the bad day I thought I was going to have, with the seizure happening and all, it had definitely turned around!!

Now it is the end of August and we are progressing in development still!
Slade is rolling from stomach to back and back to stomach.
He has even learned to roll to the dvr box and change the channel!
He has started walking (backwards) in his walker.
He says "hey" when he sees you.
(Still no mama or Dada... or any consonant sounds for that matter... except when he said baba the other morning.)
He is starting to sit up by himself!
(He only sits up until he sees a toy that he has to reach for).

I am so proud of my little fighter!
I know it has been two months but at least it's an update!

I am on my sweet husbands (hey sweetie!!) computer so... no pictures for now.
I will update the blog with pictures whenever I have the time to upload from my phone!