Merry Christmas!

Merry Christmas!

On this very special day, I only want to take a small moment away from my family at the computer (tons of pictures and stories to come , however).

I came across an article this morning in The Dallas Morning News, that was not only eye opening, but also heart opening as well.


As I was throwing the paper in the recycling bin, along with the hundreds of boxes and wrapping paper littering the floor of our adobe, I hesitated. I was certain I would have no time to read the news and just was going to throw it away. However, after a moments hesitation, I decide I would make time to read the periodical.

This article stood out to me, for obvious reasons.
http://www.msnbc.msn.com/id/34584053/ns/health-kids_and_parenting/

As I read it I could only think of how much my family reminded me of the family I was reading about. So normal, so loving, parents to a young crew. However, there are some very obvious differences.

As I finished the article on this Christmas Day with Jake playing only feet away from me, it hit me! Not only am I blessed a million times over, but I am also probably not even near as grateful for this life as I should be (are any of us?).

I have anxiety because our baby has seizures, sometimes hundreds a day. I stress over the hurt it causes Addi, watching her little brother take drugs every day, struggle with everyday activities, and being shuttled around herself. I worry that they will never go away and that people look at him differently because of them. I struggle with making the right decisions medically for my child and his brain. and most of all I want to badly to make them go away.

But when it comes down to it, I have him.

I may have to put a diaper on him, have him sleep with us, watch him struggle with numerous educational tests to ensure he is getting the best education possible for his special needs, and alter our daily lives to accommodate him, but we have him. I can hold him, help him to the restroom, dry his tears,wipe his drool, and guide him through life's obstacles.

It was a joy watching our two kids light up with the joy and excitement , that is Christmas and the birth of our Savior.

For this I am blessed.

I have them!

For this I am Blessed, indeed!


"When the star in the sky is gone, When the Kings and Princes are home. When the sheperds are back with ther flocks, The work of Christmas begins: To find the lost, To hel the broken, To feed the hugry, To release the prisoner, To teach the nations, To bring Christ to all, To make music n the heart."
~Howard Thurman, The Work of Christmas

Great news!

Dr. H came in this morning. I was still dumbfounded and shocked by yesterdays news that I did not want to say anything or ask any questions, because I was simply afraid of the answers!

So , he walked in and I stood.
I stood waiting for news, before I could ask and get answers I didn't like to hear.

However, I did notice that as he walked in he had a slight smirk. This was huge on his excitement scale, as he is always very stoic and professional. The grin was a bit of foreshadowing for me.

Because I stood, for what seemed like hours to hear something, he started to inform me of the findings from the previous nights veeg.

He stated plain as day:
It looks so much better! He saw about 50% improvement from the veeg just the night before!

50%?!! to me that is huge!!

Obviously, I was very pleased with that news and have been on a high ever since those fantastic words entered my ears. A high, that even Jake's awful moodiness and temperament from lack of sleep, side effects of steroids and missing home, could not bring me down from.

Our boy is a fighter! I pray that tomorrow will bring such sweet words as well.

Jake had a fun day today.

He had some music therapy




decorated a Christmas tree for his room:


and even saw some sites around the hospital:


We usually take a couple walks around the hospital each day to see what is going on, get our legs moving, and simply to get out. Tonight was extra cool....
Tonight we were decorating Jake's Christmas tree that Leslie brought over for him. She added some candy canes to add a little extra pizazz to the tree's limbs. Jake put a few canes on the tree then said to me matter of factly:

"I want to go give these to the other sick kids."
So as we walked tonight, Jake took his box of candy canes and passed them out to people he saw wishing them a Merry Christmas!

This was definitely a touching moment, as not only I teared up by his actions, but so did some of the receivers of his candy canes. I am unsure if they were weepy at the sight of a sick looking boy, being wheeled around in a wagon with "things" stuck to his head, or if his actions were simply that touching. But none the less, I think the kid captured the true spirit of Christmas.

He never ceases to amaze me.

"Let us remember that the Christmas heart is a giving heart, a wide open heart that thinks of others first. The birth of the baby Jesus stands as the most significant event in all history, because it has meant the pouring into a sick world the healing medicine of love which has transformed all manner of hearts for almost two thousand years... Underneath all the bulging bundles is this beating Christmas heart."
-- George Matthew Adams (The Christmas Heart)

update from Cook Children's

We are ending our second day here at Cook Children's in Fort Worth. The doctors, nurses and staff are simply amazing and really know how to take care of us. No wonder Jake LOVES coming here.

Yesterday Jake was hooked up to the leads for a veeg, video eeg. The purpose was determine if Jake really needed another dose of steroids.

We did the timeline and made a connection to the nocturnal seizures starting back up in September to the time we were given generic Depokote. The math added up and we all had our suspicions that the generic was the reason for the mass return of the beast!

The night after the cluster of seizures on Monday morning, Tuesday. I did not see any seizures for Jake. This was also the first night I started back with the "real Depokote." The neurologist wanted to make sure the switch back would not "solve the nocturnal tc problem." I was very hopeful.

However , last night Jake had 7 tc's. This morning Dr. H reported to us his findings of the veeg that night. They were not at all what I expected. I don't know if they were what anyone expected for that matter!

The eeg was worse than it was when we were released last April after a 10 day hospital stay. Continuous spiking was present almost constantly and Jake's background slowing had not improved either.

This was a shock, because Jake appears SOOOOO much better than where we were last Spring. He has not had a drop or jerk since then. He has not had to wear the helmet and his cognition has improved tremendously!

The neuro compared Jake's brain activity to a tv that has constant static. Almost as if Jake is trying to break through the static constantly, as if walking around in a fog. He was greatly impressed that he functions as high as he does with these readings. I wanted to say "that's right , Jake is our fighter! nothing is going to hold him back!"

Because of the veeg results, we started another round of steroids today. I pray that this is our Christmas miracle and we will be able to See the boy that we love at his FULL potential. Who would ever have known that he is not anywhere near his "a" game. I can't wait for the day that we see him at his best and he is able to "bring it!"

I know he will get there, for this we pray. Until then I will continue to learn and grow every day from watching my little man conquer the many obstacles set before him! He truly is my hero.

The Lord will give strength to His people; the Lord will bless his people with peace. Psalm 29:11


We went down to the atrium today to hear a band play. Jake LOVES bands, so he was mesmerized by the musicians and their art.


After the production, he swore he heard Santa coming.

ON the eve ....

of Jake's hospital stay, things got real bad.
At about 3:30 am, I heard a gasp over the baby monitor (apparently I conked out before I could get him and bring him to our bed). I ran to get Jake and , as I suspected, he was seizing.

No biggie, this happens.

about 20 minutes later, he seizes again.
I fumble around in the dark to find his magnet, but it stops before I can actually swipe his chest to stop the seizure.

About 15 minutes later, another seizure.

This pattern goes on for about a hour and half. Jake seizes, I swipe and turn to go back to sleep.

However, there was not much sleep being had last night.

Between 3:30 and 5:00 Jake had 7 or 8 tc's. Each one with growing intensity and length.

At about 5 after 5 when another one started, I made the executive decision to dust of the ole' Diastat box. I had no choice but to give Jake a good dose of the Valium like medicine to stop these damned seizures!

The Diastat did work and Jake drifted off to sleep like baby. He slept several hours past his normal rising time of 5:45 or 6:00.

There was no way I was leaving him today, so we both took a day off, if you can call it that.

The hospital stay tomorrow can NOT come soon enough.

I am so looking forward to getting up and making the drive, however TERRIFIED of what the night before then may bring.

If you have faith as a grain of mustard seed, you will say to your
mountain, "MOVE!" and it WILL move... and NOTHING will be
impossible for YOU!
- Matthew 17:20

The Good and the Bad and the NASTY beast!

Let's start with the bad, as it's always fun to cover it up with good!

Jake has been having a really difficult time with nocturnal tc's, night time grand mal seizures. He has been having anywhere from 2-6 a night, mostly every night. So gone are the days of even dropping him off in his room and me picking him back up when he is sleeping. He now just starts in our bed and stays there until the first crack of morning light and then the Energizer bunny is up and going!

I was ok with just the night time seizures, however, on Wednesday I picked the kids up from school to go see Santa. I was changing Jake's shirt in his classroom. I took off his filthy sweatshirt, turned to reach for his crisp,clean, Santa approved shirt and heard it!

The sound of his head cracking on the tile floor.

There he was convulsing right there in the middle of his preschool room. The place of peace, fun and learning for him.

He convulses and I feel like I just stare down at him, unable to help. It was heart breaking to me, to see his classmates, be so compassionate and innocent, as they watched their peer do "strange things" right in front of them. They of course, thought nothing of it. They were inquisitive, but when asked to go play somewhere else, they obliged and went on about their business.

I so wish , Jake was able to just move on and go about his business. He does in his own way, but for adults who witness such events, he is never the same kid in their eyes.

As I finally, got on the floor to hold my baby, he tried to come out of it. The sweet boy tried his hardest to tell me "he had a good day, and took a good nap." His words were barely audible and were made understandable only by a mommy. He then proceeded to try to speak, with a fat, slurred tongue "that he was ready to go see Santa!"

So that's just what we did!
I took my little guys to see Santa! Santa makes everything better!:-)

Although, Jake appeared alright, I couldn't muster up enough bravery to let him walk on his own, or even stand in line by him self. I guess that anxiety will never go away!

I feel like the nasty beast knows that we are trying our best to kill him with another hospital stay and steroid treatment on Tuesday. That's why he is fighting my poor little man. We will kill you beast with whatever measures it takes! You will not continue to control our lives forever!


The good!

Tuesday night we were invited by Jake's heart filled wish givers to join them for a cookie decorating party! It was a blast! The kids had so much fun. We were joined by another MAW family. The kids all got along great and had a wonderful time playing together. The kindness that comes from these girls hearts , never ceases to amaze me! We are so thankful for all they have done for our family and for wearing my little ones out(see picture below)!


Yes, he is dipping sausage in frosting, and going back for more!










straight tuckered out!



"With your eyes full of tears you see clearer;
And with the weight of the world you find strength."
-Zara Rullman