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

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! 

Oh so loved...

I love the love that they have for each other! 

It's such a sweet bond.

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

To learn more about hippocampal sclerosis

 https://academic.oup.com/brain/article/122/6/1007/387859

To learn more about polymicrogyria (PMG)

https://ghr.nlm.nih.gov/condition/polymicrogyria

To learn more about Malformation of the

 cortical development of the brain

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181860/

To learn more about epilepsy

https://www.epilepsy.com/

All of the above is suspected to have been caused 

by Cytomegalovirus (CMV)

To learn more about this horrible virus

https://www.nationalcmv.org/overview/start-here.aspx

Back to school...

How did they get so big so fast???

I now have a 4th grader, 2nd grader, 

kindergartner, and a preschooler.

This is my first year not having 

a child at home ...since I first became a mom. 

I hope this is the best year ever for these sweet peas!

Update on Blaze...

Since being at at CHOA we have

 had a different neurologist over Blaze.

He has came around every day to update me.

He has been really super nice and good about

keeping me in the loop.

However, he did tell me that he's not so sure that

Blaze is going to be a good candidate

for surgery because since we've

been here, his seizure pattern has looked different. 

In all previous testing it has pointed at

the temporal lobe/ hippocampus area as our problem

but now they are saying they are seeing discharges 

from other areas as well. 

I'm a little concerned but not losing hope

just yet as I haven't been told that

 by our neurologist or epileptologist.

Just hanging out...

Blaze is making the best of it.

He discovered that he really likes nutella!

There is very little that he eats by mouth so

I couldn't believe he was willing to try it!

He had a visitor today from 

the canine assistants team!

He was so excited!

He gets so bored here so he really enjoys visitors

especially 4 legged ones.

Jennifer is the bomb...

If you know Blaze then you know that he loves super heroes! Our first day here, we found this cute shirt in the gift shop. However, they only had one and it was a size smaller than we needed, so I took the name off of the shirt and contacted the company (chatterbomb). I wrote and asked them if they had anymore of these shirts in Blaze's size because I wanted to purchase one. Jennifer ( The Owner) wrote me back and said that she would check. Today, she hand delivered him two shirts and a bag of goodies! How sweet was that??? The cool thing about her shirts is that they have a hidden message on the inside. When you flip the super hero shirt inside out it says, "You are my super hero". It fit him perfectly! It was such a blessing!

https://www.chatterbombclothing.com/

We had a great trip...

We had such a great trip to Kure Beach. It's such a beautiful place and we loved how everything was in walking distance and not so commercialized. We've been trying to plan a beach trip for several years with my friend BFF Monica and her kiddos and we finally made it happen! We were also excited that my daughter Katie and her family, as well as Blaze's friend Cindy and her hubby Tom were able to join us! After the stress of the last few months, it was nice to just get away for us all. It's for sure a place that I would love to visit again!

Update on Blaze...

We came in Sunday from vacation and emptied out all of our suitcases and then repacked them. We had to be at CHOA at 7 AM this morning for Blaze's SPECT and 5 day EEG. All of the kids were sorted out to different friends and family members.  I think this is the last admission that they needed before they submit Blaze's study to Emory.  Wish us luck. It's going to be a long week, especially for Blaze, as he will be in this bed for the next week. However, he's such an amazing kid and never complains. He never gives me problems about staying in the bed. He really is such a sweet kid! 

Beach Trip 2019...

My beautiful babies...

To think, God blessed me to be their MOM!

What a precious gift from above.

It's such a honor.

I love these babies with all of my heart!