Sunday, April 27, 2014

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!

Tuesday, August 20, 2013

Let's Talk Developmental Assessments


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. 




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!

Thursday, June 20, 2013

Which Direction?

I have been contemplating which direction to go. 
Whether I should blog about Slade and share our story or keep it to myself. 
After yesterdays emergency trip to to the Children's hospital I have decided I should share.
Not to keep everyone informed but to get our story out there. 

Having a child with tuberous sclerosis you never know what each day holds. 
You sit and wonder if today will be the day he starts having seizures or if it will be a wonderful day like all of the days we have had before. 
Yesterday, I thought was our day to join a group of parents who I have learned so much from.
The parents of babies, children, and adults with a seizure disorder.

We ended up ruling out a seizure but having your heart fall to your stomach for 5 hours will teach you to hold on to the days that are amazing!

Some wonder what I could learn from parents who are experiencing things I haven't yet and wonder why I worry myself with the "what if's". 
Such an easy question for me!
Why wouldn't you want to know?
The success stories, the achievements these babies have made, and the amazing lives they are living?
Yes, sometimes it is a struggle for these parents but isn't it a struggle for every parent?

I have learned that I cannot sit and watch Slade every single minute of the day. 
I would make myself crazy if I did that!
We have to enjoy what the Lord has given us and enjoy every second!
Slade is such a blessing to us and I wouldn't know what to do without him!

So, I will share what we go through. 
The ups and downs but mostly I will document all of the fun things that we have done as a family.

Monday, March 18, 2013

Happy Birthday Slade!!

When Slade was born, we were so worried.
We had no idea what to expect, was our little boy going to be okay?
When the nurses finally handed him to me I knew then and there that it didn't matter.

They took him to the RNICU and his daddy and the rest of the family went with him.
It took over an hour but they finally took me to him.
I was terrified when I saw him.
There were cords and IV's and I could barely touch him.

So we sat with him and held his hand until we couldn't stay awake any longer.
It was around 4am when we returned to my room to sleep and we were back with Slade around 8.

This day we saw so many doctors.
Much like every day that we were in the hospital with Slade.
We got to spend so much time with Slade though and we got to hold him!

My grandmother, brother Chris, his wife, Layne, and two of their children came to meet Slade.
We had so much fun introducing him to new family members.
Earlier that morning he had met three aunts two grandmothers and a grandfather.
Today he got to meet even more of his family!
All on his first day of life!
Slade had a bulletin board in his room so we decorated to make it feel "homey".
He had a onesie that everyone that came to see him signed.
It was full by the time we left.

Later this evening, Slade was able to have his first bottle given to him by his daddy!
Thankfully we had a very sweet nurse who was able to help us.
It took some time but he finally enjoyed his first bottle!
So glad that we got this experience on camera!
We have a video but I will have to figure out how to add that later!

After his bottle my dad and Shannon went to get our car since we rode with them to our appointment.
I stayed with Slade until 2am and had to return to my room for some rest.

We may have been worried to death but our first day with our little man was the best day of our lives!

Tuesday, March 5, 2013

Slade's Birth Story

Our story begins when our little boy was still in his mommy's tummy. 
32 Weeks Pregnant to be exact and we were in labor.

Christmas Eve morning around 2:00am
Slade's heart rate slowed to 60 bpm on the fetal monitor
The doctor ordered an ultrasound where one rhabdomyoma was found on Slade's heart.
We were all worried. Until this second, we were having a perfectly healthy baby boy.
This was the first time I heard about Tuberous Sclerosis Complex.
We did not know much about the disease and were both in panic. 
What was wrong with our baby?
Is this something they can fix?
What will his life be like?
The doctor was able to stop labor.
We were sent home with a doctors appointment at UAB for December 27.

On December 26 I was to see my obstetrician. 
Everything went well at the visit, everything looked good!

Later that night, I went into labor again.
This would be my second hospital stay at a different hospital in the same week.
(I have never, to my knowledge, stayed overnight in a hospital... this was new to me.)
They were not able to stop labor.
The doctor slowed my labor enough for us to make the trip to UAB to the high risk obstetrician.

When we arrived at UAB they did an ultrasound and I knew something was not right. 
I was in labor again and it was steadily progressing!
Throughout the ultrasound I watched the clock... one minute apart.  (Maybe I should say something)
This is when our news became a little worse. 
We had been told our baby had one rhabdomyoma on his heart, after this ultrasound we were told there were multiple. 
Once again we heard those three words, Tuberous Sclerosis Complex (TSC).
Still in shock of something being wrong with our baby I turned away from the monitor.
I didn't want to see anymore.
I wouldn't accept that anything was wrong.
My baby was perfect.
They wanted me to see a pediatric cardiologist for him to do another ultrasound on his heart before I gave birth. 
Of course, we agreed. 
I then thought back to my contractions, which weren't going away!
The doctor looked at me and said, "Mrs. White, are you in labor?"
For the third time this week ma'am, yes I am in labor and my contractions are one minute apart.

I was directly admitted to the Maternity Emergency Department for observation. 
They wanted to stop my labor so I could go full term.
From the MED, I was sent to see a pediatric cardiologist who told me the same thing as the obstetrician, "Your son has multiple rhabdomyomas on his heart, we will see him after he is born and will be able to tell you more then."
After hours of observation, I was admitted to the high risk floor. 
Their plan was to observe me over night until I had gone 6 hours without contractions.
Then I would be sent to another floor to stay until my due date: February 7, 2013.

My contractions weren't slowing down.
Slade was ready to be in the world and he was not taking "no" as an answer!
On December 29, after multiple weeks of contractions, I said "no" to the pain medicine that was slowing labor and decided we were having this baby!

On December 30, 2012 at 00:00:37 Slade was born!