One Day At A Time

Oct 26, 2019

Oct 25, 2019

She's here!

My new baby GRAND is here!

Miss Adley arrived weighing in at

7 lbs 15 ozs and 20.5 inches long!

She is perfect from head to toe and

we are all in love with

this precious baby girl!

Adley Joanna

She's named after my mom who

passed away last year.

If she was still here, she would

have a fit over this sweet baby.

I can imagine she is smiling

from ear to ear up there in Heaven.

Oct 21, 2019

Oct 19, 2019

Fun times...

We had such a great time today with my friend Tabitha and her sweet babies! The kids had so much fun together and it was for sure a much needed day of shopping and fun!

Oct 13, 2019

To the parents of a newly diagnosed child...

Oct 4, 2019

Cape Day 2019...

Today we celebrate all of the extra special

little CHOA heroes and their many victories

with #CapeDayATL 2019

Without CHOA, two of my little ones

may not have been here today to celebrate.

CHOA is very special to our family.

Sep 28, 2019

Get well...

Blaze's classmates sent him a Get Well card!

So sweet!

He has such a great team this year!

Them...

They are my babies!

This was fall break for us and I sure have enjoyed

every minute with these sweet babies!

Sep 19, 2019

I tucked him in on Monday night, never imagining what was ahead. He went to bed around 7:30. He and his brother Zach laid in bed together playing minecraft and just having the best time. By 8, I told them to turn off the electronics and go to bed. It was a school night and 6 AM comes early.

Around 4 AM, I woke up with a migraine. I didn't feel good at all, so I went and laid in the bath. Around 4:20, I went and laid on the bed and Blaze laid beside me sleeping. Like always, I re-positioned him, because I'm scared to let him sleep face down. He has epilepsy and when he has seizures he vomits and sometimes he aspirates. I couldn't go back to sleep. I felt so bad and my head hurt so bad that I just laid there thinking. Nothing was unusual. Nothing led me to believe that I needed to be concerned about Blaze. I never went back to sleep that morning. At 6, my alarm went off like it always does. I got up and hit snooze. I laid back down tossed and turned for 10 more minutes. I got up at 6:10, I laid out 4 pairs of clothes, 4 pairs of socks, matched 4 pairs of shoes, stuffed book bags, made up morning meds and formula for Blaze, etc ...the same as any other school day. I woke Ada and Lola first. Got them up, dressed them, and fixed their hair. They don't eat at home in the mornings because they like to eat breakfast at school with their friends, but I made them some drinks and started cartoons.

I went in next to wake the boys. Zach always jumps right up and gets ready as quickly as he can, so that he has time to play on the tablet before school. Blaze is usually the last up and he was Tuesday morning. I start his routine with formula and then his meds. I do bolus feeds with him, because it's quicker and I like to feed him before I give him his meds. That morning was no different. After meds, I started getting him ready. I always have his clothes, braces, shoes, etc laid out on the end of the bed and I dress him while he is still laying down. It's just easier because he doesn't have the best balance and it's harder to dress him standing up. I tried putting on his shirt but it was more difficult than usual because he wasn't lifting his arms to help me dress him. I remember fussing at him and telling him that he had to wake up and help mom get him dressed. Then I tried to pull his shorts up but for some reason he wasn't lifting his bottom like he usually does. I just figured that he was sleepy. I finished dressing him and I just let him lay there until the last minute. I went in to get him for school and I stood him up but when I did he fail back into the bed. I still thought that he was just sleepy. When I stood him back up, his knees buckled and he went to the floor. I thought, ok, something's not right. He was way more sleepy than normal. I picked him up and carried him to the van because I didn't want the other kids to be late for school. The school knows Blaze well and they know that he often has tired mornings and on those days they carry him in and place him on a bean bag and they just let him sleep a little while, so I still planned to send him on to school. But when I went to buckle him in the van. I set him on his buckle by accident. I let go of him for just a second to try to fish the buckle out from under his bottom and he fell forward and planted his face into the back of the van seat, but he did not react. It was like he was paralyzed. He wasn't moving his arms or legs. At that point, I knew something had to be wrong. It had to be more than just sleepy. I dropped the kids off at school and headed to our local ER. I had thought about just driving on to Atlanta but because he was sleeping so deeply and kept dropping his head down, I was afraid that he might cut off his airway and I didn't have anyone with me to support his head. When we got to the ER, the doctor came in and asked all of the normal questions and she started running all types of tests. Everything came back normal (no infections, fever, etc) She done a CT to check for any trauma, etc...nothing was found. She said that he needed to go to Children's. She called CHOA and asked them to send their transport team. They felt he was safer to go that way than for our local ambulance to take him. The CHOA team arrived in about an hour and a half. It was a team of five people, all trained for caring for children in a crisis. They done their own exam. They tried waking him up but he didn't wake up. They set him up but his head dropped and he fell right back. They asked if they could do a pinch test and explained that they would pinch him pretty hard on both sides to see if he responded...he barely did, but only on one side. He made a small whimper sound. They checked his eyes, but they weren't reacting. It was time to move him to a better hospital for his needs. They let me know that I was not going to be able to ride in the back of the ambulance with him, due to his condition, but I could ride in the front. I made one of the hardest decisions of my life... I chose to drive myself. I've been stranded before in Atlanta and I didn't want to do that again if I didn't have to. I don't do interstates, but they would. I drove the back way. They kept me updated on their way. They called me and asked if he could have possibly gotten into meds, poison, etc and I told them no. He couldn't have (our meds are put up) and even if he could have, he wouldn't have, because he doesn't eat/ drink anything much by mouth. He is extremely picky. They said that they still wanted to give him the med to see if it made any difference, just in case he did get into something, so I agreed... It didn't change anything. They called once they arrived (a few minutes before me) and they said that he was in the trauma unit. When I got there, he was still completely out of it and he was struggling with breathing. He was only taking about 3-7 breaths a minute on his own, so they started bagging him and put him on oxygen. They ran every test imaginable on him and everything was normal (or normal for him). They admitted him into ICU at Scottish Rite. They continued to monitor him and run tests.

Around 6 PM, 12 hours after this nightmare started, he started coming around. Little by little he started moving more normally and acting more normally.

What they finally decided, is that they think that he had a bad seizure in his sleep and that when I went to wake him he was in the postictal stage of a seizure (the recovery stage). That stage can last seconds to hours depending on how serious the seizure is. If it was indeed a seizure, I did not see it and it was not like any seizure that I've seen him have because he didn't make noises like he normally does...no coughing, gagging sounds, throwing up. etc. That's what he always does but not this time. He done nothing. Nothing led me to believe that he was in distress. Nothing at all. I would have administered rescue meds, if I even thought that he might have had a seizure.

Two days later, and he is so much better! His spunky happy self is coming back! This little boy sure knows how to scare his mama. I'm just so thankful today that God gave me one more day with my precious little boy. Once again, I was reminded just how precious and fragile life really is. Epilepsy is a very scary serious condition. Your child can be giggly and perfect one second and critical the next. It can come with no warning and sometimes it's silent. That's what happened Tuesday morning. No signs at all that anything was wrong. It's so scary. Please keep my sweet baby in your prayers. He is so precious to me and this is so hard. I hate epilepsy and what it does to him.

Sep 3, 2019

Isn't she lovely...

My sweet baby girl will soon

have a sweet baby girl of her own!

She can't even imagine yet,

what a gift that will be.

Miss Adley will be here

next month!

Aug 17, 2019

Sweet Adley...

We got to take a peep at our sweet Adley today!

Just a few more weeks and this

sweet baby will be in our arms!

meme can't wait!

Her sweet face!

30 weeks and 1 day sonogram

All rolled up in a ball.

Smiling at her Meme.

Yawning

Big brother Ruston

Aug 15, 2019

So much talent...

This little girl would rather be at the gym than anywhere in the world. She has so much talent for such a tiny girl. While all of her little team-mates are running around playing, she's glued to the window watching the older girls perform. I love seeing her so excited! I love this sweet baby girl!

Aug 14, 2019

Oh so loved...

I love the love that they have for each other!

It's such a sweet bond.

Aug 12, 2019

Update on Blaze...

I'm a little downhearted as I post this post. Today, we had a follow-up with our epileptologist at CHOA. She came in and hugged me and then set down and pulled up Blaze's last scans. She did not have good news for me. She said during this last round of testing that they found more wrong than they originally thought and she seriously doubts that Emory is going to approve Blaze for the surgery. She said that she is still going to present Blaze's case to the team but because of these last findings she is doubtful. She pulled up the scans and showed me the problems. I could read some of the notes that the doctor (who read those scans) sent to our doctor and it wasn't good. Blaze has a new diagnosis of Malformation of the Cortical Development of the Brain and Polymicrogyria (which I had been told that a few weeks ago). This would be something that he was born with and most likely caused by the terrible virus CMV that he was born with. She said, when his brain was still just cells and migrating to form a brain, his cells did not land where they should, so therefore his brain developed abnormally. This is what has caused him to have epilepsy and they think the epilepsy is what caused the hippocampal sclerosis and the lesion that he has. It was a domino effect.

Back in March she gave his dx as mesial temporal lobe epilepsy with hippocampal sclerosis. At that time, she thought that the temporal lobe was our only seizure zone. However, this last round of testing, they found that the seizure activity and damage is much broader than they first thought and he has seizures coming from other areas of the brain as well. She said that they would not be able to remove all of these areas and she seriously doubts just removing the temporal area is going to make much difference. She changed his epilepsy DX to Intractable Focal Epilepsy with hippocampal sclerosis. Hippocampal sclerosis is not commonly found in young children. It is more common in elderly dementia and Alzheimer patients. It's a scary diagnosis and I have no idea what to expect. Dr. Holt from CHOA told me that they seldom ever see children come through CHOA with this condition. I don't know what Blaze's future is going to hold and that's so hard. The epileptologist said that she will be in touch and she will call me with an update after they have their meeting.

My heart is broken for Blaze.. This was our hope for him to one day be free of seizures