J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


*********************************************************

Friday, December 25, 2009

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

Thursday, December 17, 2009

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)

Wednesday, December 16, 2009

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.

Monday, December 14, 2009

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

Friday, December 11, 2009

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

Thursday, November 26, 2009

Happy Thanksgiving!

Happy Thanksgiving! We are so thankful to be where we are today in our new life with Doose Syndrome. Jake has come so far and we have been educated on so much the past year. Thank you to everyone who continues to keep us in your prayers. The power of prayer is truly amazing. Check out where we were with this darn Epilepsy stuff last November. and where we are now! I can't believe that he was able to walk on stage by himself. Sit on stage and I did not fret about him falling face first onto the floor! God Is good! Remember God's bounty in the year. String the pearls of His favor. Hide the dark parts, except so far as they are breaking out in light! Give this one day to thanks, to joy, to gratitude!” Henry Ward
video
video

Saturday, November 21, 2009

quick update

Matt took Jake to the Neurologist in Fort Worth on Wednesday. I had called a day before with questions and concerns and gave Matt a big list of things to ask.

Dr. Hernandez was more worried about Jake's nocturnal tc's , than apparently we had been. He scheduled an appointment for December 17th. If Jake is still having seizures at night we are to be admitted to the hospital. We had inquired about another IV steroid treatment , as it seemed to be our saving grace last April, when Jake was averaging 100-200 seizures a day. The child was having more seizures than he wasn't. We were admitted to the hospital for about 8 days and given the iv treatment. Since that day Jake emerged from the 9 month "walking coma" he had been in for so long.

The seizures lessened, the drooling let up, and the little man's personality returned to us! After a couple weeks we even were brave enough to take of the darned blue helmet!

So I am very torn about the thought of another iv treatment. I saw firsthand how this sort of treatment can help and am very anxious about how it may improve even his current condition. However, this will entail a 4-5 day hospital stay. Which will release us a day or two before Christmas. I am nervous for the side effects, the aggression, and the swollen appearance that comes with steroids.

I want him to be able to remember this Christmas as a very Merry one. Last years was riddled with knots on the head, stitches and seizures.

We do trust the Doctors at Cook's very much and know that they truly have the best interest of our little man at heart. So whatever decision they make, we believe it will be the best for our Jake.


"The first time you're broken, you don't know you'll be healed again, better than before."
Sharon Olds

Friday, November 13, 2009

Staples and seizures!

This has been a wild and crazy week! Jake got to bring home Mo, the class pet. It was great fun watching the kids interact with Mo. Jake even got to show what a great role model he could be. We ventured into Gap one afternoon. This sort of errand is usually nothing less than a MAJOR beating. Kids running, shoes flying, clothes falling....major beating to say the least! This particular afternoon, I gave Jake the job of showing Mo how to act. That had to have been the best Mommy -Idea I have ever had! Shopping was actually peaceful, as Mo and Jake sat by a wall and counted bananas, or whatever it is that monkeys and boys do together. I didn't actually care what they were doing, because I knew I didn't see them running or hear them yelling!

Mo went to the park with us,
and even got to take a trip to the ER.

Jake once again found himself with a laceration. He apparently go into a fight with a wall, while trying to wash his hands at school. However, this time it was not in the usual spot, the chin. Now it was the side of his head. So stitches wouldn't do the job, we had to call in the big guns...Staples! I think he is trying to make sure we are always on our toes!

Jake and Mo were troopers. neither of them shed one tear or even flinched as the staple gun pierced into his head. I can't say the same thing for me.:-)



;

Jake apparently loved the experience so much that he was most upset when I told him we were done and it was time to go. The twerp wanted to spend the night!

The good news?! I am assured that he fell, simply from the grace his mommy gave him and this was not a seizure!


The bad news? Jake has been having many seizures during the night, Or nocturnal tc's. They are not lon genough to even use rescue meds, but long enough and plentiful enough, that I once again drag him into our bed late at night, as to get a better nights rest. As opposed to running down to his room, when the monitor emits even the faintest of sounds.

Please pray that these seizures stay hidden at night and that this is not the sign of the damn beast trying to rob our house again.
Be content with what you have, for God has said, "Never
will I leave you; never will I forsake you." So say with
confidence, "The Lord is my helper; I will not be afraid."


- Hebrews 13:5,6

Sunday, November 8, 2009

a week late- oops


Geez, I notice the trend on all the blogs recently....I promise to get better about keeping up! I must do it. Life is just whizzing by and you're missing too many great things!

Lets go back a week and let me introduce you to Sir Jake and Lady Addison!


Halloween, as always, was an awesome adventure! The kids, and Matt and I, had a fabulous time!
So completely different from last year.
Last year we did have a great time, don't get me wrong, however circumstances were completely different.
Last year at this time Jake was having multiple seizures a day. He was drunk on drugs, and needless to say the anxiety level was quite high! Jake cruised the streets last Halloween in a stroller. When we allowed him to get out, one of us was right there either holding him, or close enough to him to catch him when he fell. We worried about drops, about crowds, about excitement, about strobe lights, and mostly about him getting over tired.

Although, there was a little anxiety this year, in regards to his stability. Halloween 2009 was much more relaxing than the year past.

We headed out quite early to a street a couple blocks away that is notorious for their extreme decor. The area is riddled with police officers controlling traffic and crowds, kids running to and fro, and ghosts and ghouls a plenty.

Jake was so enamored by the the look
of everything he wouldn't even carry his own treat bag. I overheard once even telling a candy giver, "No Thank You!"
The kid was so excited to be able to run without too many restrictions he could care less about the candy.

He slayed dragons.



and even fought Kings.

My heart fluttered as I watched him run, laugh, sing and play! My little man has come so far and I am so proud of him!

We had an awesome Halloween 2009!


Every day I look at something different around the house that "takes me back." Whether its the overflowing bowl in the cupboard with the numerous failed drugs that only made my son sicker, or the calendar noting the seizures and the timeline to wean on and off a new drug.

Many times it is his pull ups that he still loves to wear. I can't believe my 4 year old went back to diapers after not wearing them for so long.

The highchairs that kept him confined to his seat to eat so he wouldn't fall over and the baby monitor that sits on my bed side table, so I will be able to hear even the faintest sound.

Our little man has come so far! I am so proud of him! Many days I can't believe where we have been and I can only imagine where we will go. I can only pray that we Will never go back to where we were before!

"God moves in a mysterious way
His wonders to perform;
He plants his footsteps in the sea,
And rides upon the storm."


God Bless~ Christine

Wednesday, October 28, 2009

"I am not brave today"

Most of you know that Jake is one brave boy! Much braver than I could ever be. The kid adores shots, getting blood drawn, and getting challenged.

One night during our vacation we visited an awesome little community, Baytown Wharf. It was so fun and family friendly! As we walked into the central portion of the town, Jake noticed people flying overhead, across a small lake on a zip line.

he immediately declared to us,he too was going to fly across the sky, like the others he saw. There was no stopping him! he ran to the tower and started to climb it before I could even pay to witness my kid fly above a lake.

I have to admit seeing the tower we had to climb, sent my stomach fluttering! The young men in charge of my sons fate, kept reassuring me that Jake could climb the long, spiral staircase on his own. Jake still has a hard time walking on his own, much less climbing, a 6 story, metal spiral staircase.

So I made the long voyage with him It took about two steps for me to realize that there is no way this kid is coordinated enough to make it all the way to the top. So me, wearing tall wedges and a dress, pick the child up and lug him up the staircase, all while Addison tugs at me and cries incessantly that Jake should not do this because, she is afraid! Somehow we finally made it to the top an d I tell the man that I can't walk him out because I too, am frightened of the great distance below.

So Jake turns to me with the biggest grin ever and is led to his plank!

He walks all the way to the end.

stares out for a second.

Gives me a thumbs up.

Looks like he is about to go.....

then turns and declares matter of factly...."I am not brave today!"

In my mind he is ALWAYS brave, He is my hero!
Let me tell you how relieved I was to hear those words! I was not prepared to watch him zip across a lake!

He then opted to do "virtual bungee." he LOVED it to say the least! he kept crying "Higher, higher!" The attendee was belly laughing watching this little boy, wanting to touch the sky!
>


Addi had a great time too. However seeing how high Jake was willing to go, terrified her, so her feet barely left the trampoline. That's my girl!:-)


Next we found a great little spot to watch the sunset.





Finally, it was time for dinner!


We had a great time at Baytowne Wharf! It will definitely bee a "must see" adventure next time we have the opportunity to get back to "The Beach!"

"How fine has the day been! how bright was the sun, How lovely and joyful the course that he run! Though he rose in a mist when his race he begun, And there followed some droppings of rain: But now the fair traveller's come to the west, His rays are all gold, and his beauties are best; He paints the skies gay as he sinks to his rest, And foretells a bright rising again."

God Bless~Christine

Wednesday, October 21, 2009

Surf's up!



Wowzers! It has been a long time since I have blogged. Although I have many things to share about our awesome trip to Florida, today's post is going to be mostly pictures documenting the wonderful experience. Our life has been crazy busy lately, so I rarely find time to get on the computer for "fun" now days.

Our week in Florida was over way too quickly and we are constantly talking about the good times we had and the thought of our next trip.

The kids and I got up every morning, while Matt fished, and had breakfast and then went for a jog. We would usually stop along the way to search for some sea shells, do a little shopping, or simply walk the beach.


We then headed back to the house and grabbed the rented bike! We then would do the same thing, just with a different mode of transportation.

Days were spent basking in the glorious sun and waves of the amazing ocean. Playing football, riding waves, or simply sitting

The rats learned to boogie board and we could barely get them to come up for air long enough to feed them.




After long mornings at the beach, sometimes the sun and the waves were a bit too much, so a afternoon siesta was needed.


Needless to say we had a blast! I will share more about the greatness of the vacation, the next time I am able to find a couple minutes. I don't want to ruin in all at once!:-)

"We rest here while we can, but we hear the ocean calling in our dreams, And we know by the morning, the wind will fill our sails to test the seams, The calm is on the water and part of us would linger by the shore, For ships are safe in harbor, but t”

God Bless~ Christine

Sunday, October 11, 2009

WISH 100- Ink Party





Last Friday before we headed for the beach, we attended the Make a Wish event, WISH 100.

It is a fundraiser to raise money to send kids on their wish. The benefit kicks off with the Ink Party. This is a time of dinner and fun, meeting wish kids, meeting sponsors, eating, drinking and having basically having a good time . The best part? It is called the ink party for a specific reason. the wish kids get to "ink" their their team's legs for the bike ride the following day!

Ink their legs with Sharpies! Jake and Addison had a blast being able to actually write on something besides paper.

Jake still doesn't believe it in this picture. he is asking the victim, if it is really ok!

However, he soon got the hang of it and could not be stopped!Here is Addison getting in on the fun. This picture is Jake's team captain's leg in the beginning stages.Jake's team actaully was the top money raiser! He got to go up on stage while they were acknowledged for their hard work, raising so much money for such a great cause! He, of course, thought he was a rock star! He hammed it up and certainly won the hearts of the crowd. I am surprised I was able to even get a shot of this touching moment, as I couldn't stop wiping the tears away. How did we get here? To qualify for a wish? never in my wildest dreams, or worst nightmares rather, did I ever think this would "happen to us." However, we are here and doing soo much better than we have been. I pray that this good streak continues! Jake is still a bit toxic, as his Depokote levels are still on the high side. Therefore, I have so much fear in lowering the medicine again. I do love the fact he is a bit less clumsy and seems to be able to think clearer, after lowering it the last two times. Jake's heart was stolen by these two lovely ladies! He is certainly smitten by them. Not only because they are as pretty as they are, but I think he may know they are the ones helping him make his wish come true!;) Christine and Kristen are Jake's volunteers for Make a Wish. He met with them back in July to tell them his special wish of surfing like Scooby Doo and swimming with dolphins. He has yet to quit talking about them!

Jake was able to meet other wish kids. This is the group that attended the event. Notice Jake is the only one wearing his t-shirt? He wants to wear it EVERYDAY! He loves it and calls it his special wish shirt!
Unfortunately, we were unable to make it to the actual ride and after party the next day, as we left super early the next day to start our beach vacation.
It is so amazing to me, the efforts people will give to make another happy.
We are so blessed to have a team sponsor Jake's wish.
So blessed to meet the kind hearted people that give their time to make Jake's wish special.
And so blessed, that the Beast has decided to back off , at least for now.
Jake is a fighter and is hopefully kicking his butt so hard that he won't want to show his stinkin' face again!
"For today and it's blessings, I owe the world an attitude of gratitude."
God Bless~ Christine
search for my kiddos using the name peters528. You can vote once a day!


















Posted by Picasa