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

"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

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

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

VOTE for Jake!!! please go to http://family.go.com/gapcastingcall/?cmp=OTC-Gap-Gapcom-HPBanner-Entry

search for my kiddos using the name peters528. You can vote once a day!

We are back!

We are here in Santa Rosa beach!

we are tired, cranky, and ready for bed!

But we are here and so far seizure free!!

last year when we entered the house , Jake had a tc! It was a long one. One probably requiring Diastat.

so far, however we have had none and we are just loving life!

we walked in,changed, daddy got his fishing poles ready for tomorrow, and we left for Stinkys! After stinkys we sat at the beach and watched the tide roll in, swam, laughed, and looked for crabs. In 1 hour our lives were transformed!

the kids have been bribed stinkeys since last year. Stinkys and red bar are two of our favorite places to visit while here. so , check, we got our Stinky's fix, now on to the Red Bar!
http://www.stinkysfishcamp.com/stinkysfishcamp/


I am off to bed, but you can bet that more pictures and updates will come daily. Especially the much anticipated Make a wish "ink party" and the first moments seeing the water pictures.

(I am aware tehse are awful pictures. I have yet to break out the decent camera)

I can't wait to tell you guys how much fun we are having.
and more importantly how therapeutic this is for us.

Watching or troubles go to the sea.

"The sea possess a power over everyones moods that has an effect of a will. The sea can hypnotize."

God Bless~ Christine

OINK, OINK

Saturday night at the Pegasus Ball for Autism, the Arkansas football game was on. I was forced to "call the hogs" for the first time ever.....well, apparently I do a pretty mean PIGSOOIE because it worked!

I called the Hogs alright.

The pig has entered the house! We are now living with the swine and the BEAST!
The Peters' have been quite busy lately. Between doctors appts., a week full of in services, a sick little girl, and a boy that had a long weekend of seizures.

God is good, and a break is in the near future.

Next week we will head back to beloved Florida for a week away "from it all!"

The beast, the swine, and others may follow, but we will all be together, at our most favorite place on earth!

I have some pictures of the photo shoot, for the make a wish national campaign and some videos as well. Jake was a ROCKSTAR! He had way more patience than me, and really played the part , as the actor! I am soo proud of him!

Stay tuned for the takes of the shoot!

We, Brandy and I, are looking to change the blog up a bit, if yo have any suggestions, please let s know!


God Bless~ Christine

where do we begin?

Had an awesome week or so since the last blog update. Stinks I am not blogging more, but work is work, and in between work and the rats, it's all I can do to remember to breath, much less blog.

I will start with the freshest tears on my mind.

We had the amazing opportunity to go to the Roundup for Autism last night. What a spectacular event. What an amazing cause!!! Silent auction, good food ,good wine, good friends, good date night night, and amazing emotions!

I sat there and cried at the event. Cried? I am unsure why. But yes, cried. I assume, because I was dumbfounded by the event and the awareness that an event like this can lead to.

No Jake is not autistic, or on the spectrum, but hearing, watching and respecting the cause, did bring tears.

I have said it before and will continue to say it...Jake "was given this " for some reason. I am still unsure why and what our calling truly is, but i know we have some sort of part in God's plan for this damn Doose syndrome!

Pictures from the awesome event! Thanks Anna and Joanna!

Hmmmm, how do I even start this portion?!

We have been going to Oktoberfest in Addison since our Addison was in my belly and even before that. However, as she walked the sidewalks of Addison today and saw her name etched in the concrete, she was amazed! We told her that the town was named after her! So we went to our annual, beer drinking, fat eating, money spending event. This time with both kiddos old enough and seizure free enough, to recognize the true fun of it all.

Long story short...we played, drank, and ate some brats and pretzels.

We made sure to hydrate the rats.

They rode some rides.(I have edited this a million times, but dont know why it is not showing.)

and they danced the polka.

We had the twerps in the double stroller, on grass, or seated at an event table all day. We finally made our way to the face painter, as Addison BEGS to get her face painted. I swipe the rats out of the stroller to pick their poison, that is, the ink that will transform their cheeks.

Just as I do this, I hear the most God awful THUD! Like a sledge hammer hitting concrete! I am sick! The pit of my stomach still aches from that sound. I assume I was getting tickets or money to pay for the monstrosity that will take over my kids faces. I didn't actually see him hit the ground, but was right beside him.

He lay there, I throw my beer at someone, or something, and grab little Jake. As I scoop him up , I somehow grab the magnet to swipe over his vns on his chest. He continues to convulse in my arms.

I hear people screaming, talking, "ahhing", and see them staring.

I cry.

I really don't know what happened exactly after that, except, Jake I were sitting on an air conditioned floor, out of the heat, surrounded by "onlookers" and EMS.

I remember trying to assure people he is fine! He has epilepsy! Get over it and quit staring! Quit following! and quit freaking out!!

I continue to cry!

At this point I am sooo not concerned about the effing seizure, but about the hit his head took.

His head, thankfully is NOT bleeding, but has a knot and blood blisters or "blood dots" all over ,the size of a golf ball.

I cry.

Not sure why I cry and cried...not really sure. Maybe I was embarrassed? maybe I am pmsing? maybe I am sad he has not had these "day time " seizures in a while? I don't know, but I cried and I continue to cry as I type.

Lord please don't let this "break through seizure" be a sign or what we may see in the near future.

Do not fear , neither let your heart lose courage; our christ invisible helps you with a hidden hand; He tests you in order to give you HIS grace. As much as the earth is cultivated; and as much as the farmer pushes his plow, so much more will the world give fruit in his time. Even so does the great farmer, God, do with our souls. He allows trials, afflictions, suffering and distress to come to us and enter deeply into our heart, and many times we find ourselves at an impass, not knowing how to handle that or this trial, and we suffer and feel great pain. But for those who love God, He works together with them , that these things turn out for the good.

God Bless~ Christine

big news and showers!

It has been a awesomly long week. Ending in Matt and both getting an upper respitory infection and sinus infections. Good Times!

Better us than the twerps, though!

We had a couple of big phone calls this week.

The first being:

Jake has a sponsor for his wish!

The North Texas Chapter is hosting Wish 100. This is a bicycle event here in Plano that we had planned on attending, because Jake is a " wish kid."

A couple days ago, however, I received a call at work stating that UBS raised $6,000 or more and is sponsoring Jake and his wish!

Wow! Words don't explain the way I am feeling.

Because Jake has a sponsor, we now were invited to join in on the "Ink Party." This is a pre-race party where the wish kids get to "decorate" their team's legs!

Oh the tornado will love being able to wreck some havoc on others ..."legally!"
,
Go here to check out the event details:
wish100.org

I also received a call that Make a Wish wanted Jake to do a photo shoot!

I sent them some of our pictures from the Dallas Cowboy game and they apparently thought Jake was cute, who wouldn't?!:-)

Therefore, they asked if I would be willing to get him involved in a photo shoot for the National campaign.

Hello?! Of course we would!

We went last night to the photographers casting call. She took a few pictures of Jake and now we wait to see if he "made the cut."

Such amazing opportunities!

I HATE the fact that he can even qualify to receive a wish, but since he can I am glad we are able to have the opportunity to touch others lives.

In Jake news:

His Depokote levels turned out high again. Therefore,we had to cut back on, yet, another dose of the medicine. As much as I hate side effects, seizures pretty much suck and scare the crap out of me.

Last night was his first night without his afternoon dose and it didn't go to well.

Jake was up all night long.

Not only was he up, I suspect some or several seizures.

I woke to "the sound" on the monitor. I ran in after waiting awhile, as I was sleeping and kind of forgot the
"sound" only to find him very postitcal. He was "clucking" like a or clicking his tongue for several minutes as I lay with him. This tells me that the seizure was a lot longer than the ones we have been seeing that are under 20 seconds. I suspect this one was at least 1-2 minutes. Hopefully, that was all it was. I am riddled with guilt for not running in there sooner and not knowing how long "it" really was.

I then picked him up at school, lifted him up and felt major arm twitching. This certainly scares me sooo much!! I hope we don't regress and that this is all just with drawl symptoms, as I have read to expect much like a heroin addict or alcoholic coming down from their high.

In good Jake news.....It is UNBELIEVABLE to me that he now, once again, takes showers by himself!

He was doing this before the beast entered our house,but has not in over a year.

Jake now takes showers by himself.

God Bless~ Christine

Better than swimming...

Addison stated "This is the best day of my life, better than swimming," after we were able to attend a Dallas Cowboy game, compliments of Make a Wish!


While at school Friday, I got a call from Make a Wish. My heart stopped! Was this the wish? Jake had wished to go surfing back in July, but nothing has been set in stone about the trip. On the other side of the line was a coordinator from Make a Wish, not necessarily granting Jake "his wish", but inviting us to an awesome outing!

They had tickets to the Dallas Cowboy's game at the brand new stadium! I couldn't pass them up, even knowing Matt had already made plans during game time.

The kids and I would go and ask my parents to join us. needless to say, it was an awesome experience! The kids have grown up routing for Da'Boys. They donned their Romo jerseys and we headed out! The stadium is ridiculously cool. It was no stadium, in my opinion, but a 5 star hotel. There were "napkins" with the Dallas Cowboy star in the restroom, as opposed to a blower or paper towels!

The kids had hot dogs, nachos, cotton candy, and bought hats as souvenirs! It was GREAT fun!

I was very worried about the game starting at 7:00, Jake's bedtime, and what that change in sleep pattern may do for seizures.

So as expected, Jake asked to go home at halftime, I am surprised he made it that long.

We were driving maybe 20 minutes when he sacked out.
We were driving about 40 when the seizure hit.
It did scare me, as I had not seen one like that in quite a while, but bless my parents, they were speechless in fright.

We soon got home and I put Jake in bed with me. He had been sleeping in his own bed, but I was a little worried "I might miss something" if he wasn't with me.

As I lay next to him feeling his breath on my cheek, I prayed.

I prayed harder than usual. I prayed for healing, for strength, and for understanding, if he may "relapse."

I lay there and prayed.

Eventually I fell asleep, but was awakened by Jake.
His face was over me.
he looked at me and said "Mommy don't worry the angels are here. They're taking care of me."

I asked where Jake, where Jake" show me!"
He pointed and said everywhere, especially my head.

I still get chills recalling this event. I still don't know if I was dreaming. Al lI know is I feel peace again.

The following morning the kids and I went on our walk.
What did we see?
The Hawk!
Addison pointed him out as he flew in the street next to us. She said, " Mommy is that Jake's hawk?"

I said, It is indeed, it is indeed.

Have I not commanded you? be stroong and courageous. Do not be terrified, do not be discouraged, for the LORD your God will be with youwherever you go.

Joshua 1:19

God Bless~ Christine

( for the hawk story go to Sept 27, 2008)

School days!

Wow! What a fun, exciting and exhausting week. I can't believe it has been a week since the last post. I have many things to "blog" about, however will save tonight for the "back to school post."

The kids LOVE school!

Don't get me wrong, there were days of many tears, both from the kids and me. Many long meetings, including ARD's, planning and informing about sweet Jake, and of course many a penny spent on all the back to school supplies, gear, and extras mommy just knew they "couldn't survive without!"

Unfortunately, I have been having huge camera problems, so these are the best pictures I could come up with to capture the all important milestone, that is "the first day of school."

I can't believe, and am sooooooo grateful, that I was able to be there with my little kindergartner, as she walked through the halls of her first "real school."

I can't believe, and am so grateful that Jake was able to be there with us, and also walk into his own classroom.

The keyword here being WALK!

It was just this last May, when he was not "allowed" to walk. Allowed, because, as soon as I would let his precious feet hit the ground, his head would soon follow in a seizure. Si I didn't let him walk, infear that we would land ourselves back in the er for more stitches, as we have done so many times before in the past year.

Jake walked, skipped, ran into his brand new school!

We are blessed!

Dear Lord, it's such a hectic day
With little time to stop and pray
For life's been anything but calm
Since You called on me to be a mom
Running errands, matching socks
Building dreams with building blocks
Cooking, cleaning, and finding shoes
And other stuff that children lose
Gitting lids on bottled bugs
Wiping tears and giving hugs
A stack of last week's mail to read
So where's the quiet time I need?
Yet when I steal a minute, Lord
Just at the sink or ironing board
To ask the blessings of Your grace
I seen then, in my small one's face
That you have blessed me
All the while
And I stop to kiss
that precious smile

God Bless~ Christine

summers over?

Tomorrow starts the first day of school for my babies. The first day of kindergarten for our dear Addison Mary, and the first day of full day preschool for little Jake, since the seizures started.

We had tons of fun this summer. We went to the Dallas museum of Science and natural history, soccer camp, swam many a day, hit the library, visited spray parks, and went on many walks including picnics. The following are just some of the examples we had an awesome summer!

We had so much fun! I will definitely miss my sweet angels. I would probably rather stay at home with them all year, HOWEVER, being able to go back to work this year, knowing where we were at last year is an amazing blessing! I pray that we can keep up this "awesome run" that we have had!

I am blessed and thankful for each day!

"Some people are always grumbling that roses have thorns; I am thankful that thorns have roses!"

God Bless~ Christine

Poster boy?

Back in April, when Jake was going through a very difficult time and seizing 100-200 times a day, we had to stay in the hospital for a week and 1/2.

It started out as simply an overnight stay so I thought.

A day grew into 3 more days, which turned into a week, which turned into more days.

I will not complain, as that week, seemed to "fix" Jake.

"Fix," totally, no.

But "fix" from seizing more than he wasn't, YES!!!

While we were there, I tried to keep Jake busy, so he wouldn't go crazy and most importantly so I , nor the nurses, would murder him.

10 days in a hospital with a 4 year old on drugs is not pleasant.

Jake and I took many wagon rides round the hospital, to different floors, the lobby and the prayer garden.

On one trip, Jake was asked to be allowed to be photographed. I obliged, as it is the very least we could do for the compassion, kindness, warmth, and knowledge Cook Children's has given us.

Last week while at our regular scheduled appt., Dr. Hernandez informed me that the Marketing team was outside and wanted to do a video and more pictures with Jake!

I am unsure, how that really went down, but I like to say that they knew Jake was there and wanted him for the pictures. So they took a video of Jake getting a "fake" immunization. They also took several still photos as well.

Ironically, The always active and never sit still boy, was dumbfounded. He did not say a word, which was alright as it will be recorded over, but appeared to be almost shy!

Turns out, the child was disappointed, yes disappointed and upset, that he received a fake shot and not the real deal!

The kid LOVES shots!

The other day I told Jake he had to go get blood dawn and he shot the BIGGEST smile and exclaimed "DaDAY?!" (today) I said yes, if he went to bed and napped real good! he immediately went to sleep, and the first thing he said upon waking was, "Can we go?!"

The lab techs, didn't believe me that he would be ok getting blood drawn. Therefore, they brought in the masses to try and hold him down.

The child extended his arm, asked to tie the rubber band to make the veins appear, and even "slapped" at his arm to make the veins appear.

They inserted the needle to draw the blood and the kid laughed! The techs were amazed! or maybe even appalled!:-)

Here are some photos from the first marketing event!

" in the end it's not the years in your life that count, but the life you put into those years."

Abraham Lincoln

God Bless~ Christine

Hope!

So after all the bad.

Not saying that it instantly got better, and I did leave out many of the daily details.

For instance, having to hold Jake up and spoon feed him while we have family dinner, propping him up with pillows so he could sit to watch tv., translating my 4 year olds language to others, even family, carrying burp clothes around because he drools so much and he needed to be wiped as much as a baby, and even transitioning from being potty trained to wearing diapers, to name a few. We are now at a much better place.

A better place thanks to Dr. Hernandez and the other absolutely wonderful and caring people at Cooks Children's.

We still are dealing with many issues.

For example Jake's hair is falling out. The boy that was almost known for his thick white locks, is losing his hair.

He is very impulsive, to say the least. At any time, any object may be hurled at our head.

He stills stumbles around, and his speech is still slurred.

I have a very difficult time noticing it, as I think we have come soooo far. However, when we go to get an eval. at Our Children's House, an awesome organization. They tell me our son not only qualifies for occupational therapy, but also speech therapy and physical therapy.

When did this happen? When did the tables get turned?!

I am the one usually conducting the ARD meetings. Now I am on the other side of the table and instead of me suggesting how I can help other peoples children. They are telling me what they can do for my child!

It is strange. It is hard. And is is even heartbreaking. Let's face it, who thinks they'll ever have a "special ed" child? However, it has made our family so strong, so forgiving, and so open.

For this I am thankful.

Jake is still having seizures. Thankfully, not atonic, or drop seizures, and not myoclonic seizures.
These seizures greatly impacted his quality of day to day life.

But, he is still having the tc's. The seizures I was TERRIFIED of, to say the least. The seizures that I made Matt stay home with me every morning until 10 or 11, because I was petrified of him having them with me. I did not want to stick medicine up his butt, I did not want to see his eyes roll back in his head, and I did not want to pray to God from them to stop before I had to call 911.

I left that to Matt.

Jake is having tc's. I don't know exactly how frequently, as we have been trying to give him space, as well as live a normal married life sleeping in our own bed without little feet and hands.

We still use the monitor, but I simply can't stay awake all night, so I may be missing something.

The past several days, though,Jake has been having a couple tc's a morning.

The doctor. Not the nurse, but the doctor , called Friday evening, as we were on the way out to a Hibachi grill with Matt's parents.

He asked me how things were going? I immediately said the same thing back to him.

How often does the neurologist call you personally? NOT OFTEN!! I was taken back and assumed and was certain he was going to tell me something I did not want to hear and did not have the strength to handle. He did not tell me all this bad news. It was not great news, but not as awful as I expected when I sat myself on the floor and braced myself against the kitchen counter.

He informed me Jake's "levels" were pretty high. His Depokote level should be 50-100., and Jake's were 143. He suggested that maybe this is why I am still witnessing incoordination in Jake and even maybe why his hair is falling out.

The solution? Drop some meds. As scary as this is, I am ready for it. I hate the side effects almost as much as I hate the seizures.

I can deal with the tc's in bed, but I would hate for the drops to comeback. Please pray for this change to be a great one for us.

We are two days going on our decreased med, and so far all is great.

I pray that this stays the same, as school starts tomorrow

Handsome boy, even with black teeth from all the falls.

He can eat by himself, we didn't know if we would ever see that again!

He can sit by himself! (he usually sits with one hand propped behind him to stablilize himself so he doesn't fall.

To keep a lamp burning , we have to keep putting oil in it.

Mother Teresa

God Bless~ Christine

You're Fired!!

I am going to try and update as best as I can and as quickly as I can where we were last year at this time.

It is about to get hairy, as the school year is getting underway. Besides me resuming my responsibilities as a special eduction teacher, Addison will be starting Kindergarten and Jake will be starting prek full time as well.

August 5th, 2008

We had Jake transferred to Children's Medical in Dallas.

Jake loved the atmosphere much more and was much more willing to cooperate with the nurses and doctors in this kid friendly atmosphere.

Jake LOVED the fish tank

The first smile I saw in over a week...needless to say I was a blubbering mess

They ran more tests and promised "tomorrow" we would go home.

However, tomorrow kept turning into another day, as his seizure types kept changing and/or increasing.

Finally, after 4 or 5 days taking up residence in downtown Dallas we got the ok to leave, but not without telling us:

"Jake's a very complicated case."

This did not make me feel much better, when taking this new child home with no nurses, iv's, doctors, and emergency care always on hand.

But, they did give us Diastat, the emergency medicine. I did feel MUCH better armed with this little weapon.

Right before we were walking out the door, Jake starts throwing up.

The nurse came in and advised us to wait a couple hours, let the doc check him out again and then we can go.

On the way home, Jake throws up in the car 2-3 more times.

We get him inside , cleaned up, give him his meds and the boy starts losing it again. He can't hold anything down, most importantly, he can't hold his medicine down.

So, Matt and I load him back up in the car and head to the nearest ER. Apparently Jake had picked up a virus at Children's.

The doc at the er gave Jake anti nausea medicine and another iv of his Depokote, so his little body can actually absorb it and we may be able to get some sleep.

( jakes littlehand says it all, in the er hooked up to the iv)
The next morning, we wake up tool around for a little, and Jake needs to go potty. I take him potty, not yet knowing what the heck a "drop seizure" was.

As I watch him going pee-pee, I witness him lose all muscle tone.

He falls straight down, chin hitting the edge of the commode and his little head flinging backward onto the tile floor.

Yep, here goes another ER run.

8 stitches and a cscan later we are able to go home.

Little did we know this would be the first of 12 sets of stitches in the same place in the next year.
FIRED!

LOng story short...hopefully.

Our pediatrician is adamant that we need to get back in with our neurologist a follow up appt.

Our peds. office even sets up the appt.

The day of the much anticipated nuero visit, I get a call 3 hours before.

They tell me I can't come in today.

We set up another appt. for the following day, however at their other location 1 hour away.

I load Jake up, who at this time is having HORRIBLE side effects of the new meds taking over his body, in Dallas rush hour traffic and head out.

We get to the appt. and are surprised to be the only ones in the office.

After waiting nearly a hour, our nuero walks in.

The first question she asks is:

"Why are you here?"

Dumbfounded, I respond that, as if she needed to be reminded, that our pediatrician recommended, we see her right away, as Jake is still seizing uncontrollably and it is pretty scary, and it may make us feel better, if we could control them.

She then informs me, she can't see us anymore.

I am absolutely dumbfounded!

I muddle up, trying to fight back, tears, rage and that growing lump on my throat, Why?


She tells me that there are "too many people involved!"

I tell her " too many people? this is my sons brain, his life!"

She informs me she knows and that's why she can't see us, BUT she will see us for 30 more days and order blood tests for tomorrow because Jake is still having so many seizures we need to see if there is room to increase his meds.

I walk out, feeling like a lost puppy, carrying home my dying cub, with now hope in the world.

I cried, bawled, and screamed the whole hour home.

However, I was a little encouraged that she would be our doc for a couple more days so we can get these meds figured out.

I drag the kids out of bed early, early the next morning, so we can be the first people in line for the blood work.

We were not the first, or even close to it.

However the other patients saw how much Jake was seizing, and it probably freaked the out a bit, so they us go ahead of them

I was supposed to hear back by 12:00 about the results, so I knew if I could Jake more of his afternoon dose or not.

I waited, and waited, however the call never came.

I called and left message after message to the neurologist office and never ever heard from them.

So here I am , with a seizing boy, no neurologist, no new meds. and no where to go.

I tought I would never make it past this point in my life, however through the support of family and friends and the great Lord above we are here today. This is an example of the unwavering support that has been shown to us during this very trying time! A letter from a friend:


I just wanted to take the time to point out to you and Matt how far you have come. It is soon to be the anniversary of the beast's appearance...that's 365 days that you've made it through. 365 breakfast's, lunch's and dinner's... 8,766 hours...52 weekends. Amazing and remarkable. You have still eaten ice cream, you have fished, swam, rode bikes, got up on ski's, tubed, strolled for Epilepsy, raised money for charity, gone to the beach, hung out with friends, birthday parties, girl's nights and have shown me and countless others... what Epilepsy is. We are all more aware. We are smarter. We are passionate and we all realize the tremendous need for more research and awareness. It is contagious, this desire we all have... to get Jake better and all of those that suffer.

You should be proud of your marriage, proud of your families and proud of yourselves, for I bet you none of you thought you were going to make it through ONE day. Now you can say you've almost knocked out 365 of them.

I love you both and your sweet family and I am glad that I am on the "list" of friends you turn to when you need something. Don't ever cross me off...etch it in stone, if you can.
Love, Brandy






God Bless~ Christine

August 5, 2008

Matt scooted off early to work.

I woke with Jake by my side.

We talked to each other for a bit.

I then put on some show on Disney and went to go get ready.

We were taking muffins and cookies to the fire stations that had helped Jake.

As I was washing my face, I heard it.

The huge gasp!

I ran into the bedroom and saw, Jake seizing again.

The neurologist sent us home with no emergency medicine, so there was nothing i could do except hold him and talk to him.

After about 4 minutes I called the nuero's office and asked what I should do. Should I bring him in to them or call 911.

They told me I could make an appt., they didn't know what to do.

Hello?!!! my son is seizing now!! What do I do?!

After a couple more minutes waiting for answers, I hung up with them and my mother in law and I decided to call 911.

the minutes ticked by, 7 minutes, 8 minutes, 9 minutes.

I believe the paramedics made it to the house at minute 11 and Jake was still seizing. However, I quit counting.

He was still seizing as we loaded him in the ambulance.

We rode to another hospital and prayed they would find anything to answer the question, as to why he is seizing so much.

They did spinal tap, which turned out negative, and decided he needs to be checked in again.

After several calls to our pediatrician, and our neurologist.

After waiting hours for the neurologist to show up, Matt and ,along with friends, and even my dr. (ob/gyn) made the difficult decision to transfer Jake to Dallas Children's. (our , so called, nuerologist never did show)

Leaving, yet another hospital, still with no answers.

Jake with Tracey eating Rosie's yummy cookies!

God Bless~ Christine

August 4, 2008

Today we finally get to leave the hospital! Yeah!

There were no findings, no results, no answers, but we could go home.

I guess in the car and signing the dismissal papers, I was just happy we were leaving and had no clue what we were in store.

Doctors are supposed to help you, give you answers, and talk you through the problem.

The only thing I really remember hearing was "We just don't treat seizures in inpatient."

I wanted to look at this neurologist, take her neck in my hands and literally wring it.

"yes, you have told me, you don't treat seizures inpatient! then make them stop!!!"

Saturday, July 2, 2008,was pretty tough, as Jake was already pretty drugged that previous night, in order to make the seizures stop. Then Saturday morning, he had to have a MRI.

This could have been the most miserable experience of my life. The techs were literally fighting with each other, I hear them yelling at my son to lay still, and it takes FOREVER!!!

They bring Jake to us and inform us they had to give him more drugs, because he wouldn't lay still. At this moment I was certain, his little body would simply shut down. He did not speak, sit, or eat for at least 16 hours after this.

The tears and the emotion that day, almost led me to pull him out of the hospital right then and seek treatment somewhere else.

Actually, I think Matt and I said we were going to do that, but at this point we were sooo terrified of big seizures, aka, tc's, we were too afraid to travel to another hospital with him in our car.

We were afraid of the unknown, as we still had not been educated at all about what was happening to our precious baby!

So Monday night, we were finally released from the prison, some call a hospital.

Jake had a great time when he was awake enough, sober enough and not seizing every minute. "til this day the kid LOVES hospitals and can tell you details about every nurse and every detail of every hospital he has been at.

My iv, this is where I get my meds

Waving goodbye to the hospital, with my VBS shirt in hand.Best friends reuniting for the first time in 4 days!

God is our refuge our strength, a very pesent help in trouble.

Psalm 46:1

God Bless~ Christine

August 1st, 2008...enough said

I remember the sun shining through the blinds, and thanking God that Addison and Chad had not decided to climb in my bed in the middle of the night. One kid's knees and elbows in my back all night were quite enough for me.

I remember it so distinctively.
I turned towards the window to roll out of bed to make the morning bathroom break.
I remember exactly how the room smelled.
What I was wearing.
and even my thoughts, that I couldn't wait to "go" and then come back and get some cuddle time with Jake.

My feet didn't even hit the floor, when I heard the strangest sound and then the bed, almost violently shake.

I had remembered a similar incident a couple years earlier when the space shuttle blew up over East Texas. It was similar in the respect of a bed doesn't usually shake like this, but different, because I didn't hear "that sonic boom" I heard a couple years earlier, and I knew something was very amiss.

I turned back to the bed, only to see Jake flat on his back. His toes stiff and pointed inward. His arms jetted out, hands stiff and curled in.

his body was violently jerking uncontrollably.

Then my eyes made their way up to his head.

The most distinct "clicking noise" was coming form his blue mouth.

His eyes were open, but rolled all the way back in his head.

I slightly remember trying to shake him "awake."

I then recall being on the phone, almost calmly asking my mom, if I should call 911 or just let it pass.

About this time I see his lips going from blue to purple.

I immediately hung up with my mom, called 911, and called Matt on the other phone.

The rest is a blur.....For what ever reason I do remember some female cop in the house, along with what seemed like a million other people in uniform, telling me to get dressed and get my purse (lord knows what I was or wasn't wearing). I heard her, but it didn't sink in that I had to go anywhere, because I didn't want to walk away from my baby even for a second. I then remembr her looking at me again, as my precious baby was being wheeled out on a stretcher, with tubes from his arms, telling me I had to get my purse.

It then hit me I had two other kids in the house, I couldnt leave!

Next thing I knew, my sister in law was in my house and I was being loaded in the ambulance with my helpless son.

Somewhere in all this I guess I had called her to come get Addison and Chad.

Jake didn't wake up or make a sound until we were being unloaded from the stretcher and into the er.

The rest was a blur of tests, cat scans, "pokes",and eeg's nurses and doctors.

What seemed like 3 days was actually only a day.

We were released that evening at around 10:00 pm, as the neurologist made a point to keep telling me, "we don't treat seizures inpatient."

My brother said it best "they sent you home like he was a new puppy, here have fun with this." no instructions, no medicine, no treatment.


Apparently Matt had caught an immediate flight back to Dallas, because he was there with u s majority of the day and was there to take us home.

We put Jake to bed and within 5 minutes "they started again."

Seizure after, 5 minute seizure. About the 3rd or 4th time I called back to the hospital and they told us to come back in, because we needed to be checked back in.

Jake was heavily doped up and finally was able to sleep peacefully without seizing. I think he was the only one catching any z's that night.

The Lord is my shepard Ishall not want. He makes me lay down in green pastures; he leads me beside still waters.

He restores my soul. He leads me in right paths for his namesake.

Even though I walk through the valley of the shadow of death, I fear no evil; for you are with me, your rod and your staff- they comfort me.

You prepare a table before me, in the presence of my enmies, you annoint my head with oil; my cup overflows.

Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord my whole life long.

Psalms23

God Bless~ Christine

Poopoo on the potty party- July 31, 2008

Jake did it! He finally poo-pooed on the potty!
He had been going peepee on the potty for a while now, but poo poo was a little harder to master after one unfortunate incident not to be named at this moment.

Well, he finally did it and was consistently "doing it" for several days, so even though Matt was out of town, we had a party for him, at his favorite spot, Joe's Crab Shack.

His 4 cousins, his aunt Lisa, Addison, and I all met for dinner, or rather in the kids eyes, an awesome play date at a cool park covered in sand.

Towards the end of the adventure Jake fell face first onto the concrete deck. This caused a huge black and blue swelling in the middle of his forehead, little did I know it would be the first of many.

At this point, we decided to take the kids back to our house for some swimming and dessert.

We had an awesome time and were surely appreciating the days of summer, swimming, sugar, friends and family.

We danced to Mama Mia most of the night!

Finally when it was too far past the kids bedtimes, we said one more song and we all jammed out to Dancing Queen, before we headed off to bed.

Jake came to bed with me and Chad, Addison and Jake's cousin, went to sleep with Addi in her new trundle bed.

It was an awesome memory! Lisa and I spoke of it that night...how cool this was for the kids to experience such closeness and such fun with their family!

I don't care how poor a man is; if he has family he is rich.

M*A*S*H

God Bless~ Christine

Wednesday July 30, 2008

Today was the first time that I heard from the neurologist.

I met some teacher friends at Melissa's house for a lunch catching up with some awesome mentors and great friends I have met while teaching at Apollo. Again, I mention Melissa, because we really don't socialize on a casual basis, however she is a fine Christian woman who always seems to be there in very important times in my life.

For some reason I find that ironic. I am unsure why i feel that's ironic, or why she has been there at the most trying times of my life. Maybe because of her great Christian faith and I know she is praying for our peace and for Jake's recovery.

Anyway, we were all sitting at the table enjoying a yummy meal and the phone rang. How rude of me to have the phone at the table,but I knew I was expecting this call.

It still seems so weird to hear the words that came out of my mouth, but I excused myself by saying, "sorry, Jake started having seizures, so hopefully this is his neurologist."

What? Did I just say that? my son just started having seizures?

I remember the wide eyed looks at the table, as if I just said my mom died. When I came back to the table, i felt as if surely there was an elephant in the room.

However, I dismissed Jake's seizures as nothing at the time, so the elephant really didn't bother me one bit. He and Addison were at school, so Jennie and I went to catch up some more.

We got an appointment set up for Monday August 4th...almost a week away.


God Bless~Christine

if today....

was a year ago, I would be rushing Jake into the pediatricians office.

I described on the phone what I was worried about and they thankfully got me in in a matter of hours.

The ped. was concerned enough, to have her office call and try get Jake a nuero appt. ASAP.

ASAP, apparently meant whenever they got a chance to look at the books.

It was several days before I heard anything about an appt.

This should have been my first sign!

God Bless~ Christine

soo annoyed?

I had no other title for this, other than I bet you are all so annoyed that the previous titles have to do with a year ago.

this one does too.

Sooo...a year ago today my sister in law and I , took my mother out for her birthday to see Mama Mia and then to Neiman's for their awesome food, specifically their popovers! yummo!. While there we saw an amazing woman that I shared a classroom with my first year of teaching, have come to be great friends with and even randomly saw her at a friends funeral the the other day. I think Melissa was placed in my world for a reason. I am not quite sure yet exactly why, other than her being an amazing person, but the way I run into her in random parts of my life and met her is astounding!

Her and her husband write amazing books by the way. I give them for most baby and wedding showers...check them out!
http://www.amazon.com/s/?ie=UTF8&keywords=harry+h+harrison&tag=googhydr-20&index=stripbooks&hvadid=1149735341&ref=pd_sl_8598lr5wl2_b
(I apologize for putting the amazon site up, but thats I really all I know how to do. you will not be disappointed if you buy these books either!)

Anyway, so we go see mama mia, have an awesome meal at neimans.
I go out to my car and notice a flat tire. Not the kind of flat like I can drive, but really flat, like I need help pronto!

is this a sign?

So I rescue Matt from the twerps, as I believe, he had a golf date, and my wonderful father goes with me to fix the car, as my mom watches Addi and Jake.

All this time, I am feeling uneasy.

Besides the fact I never get flat tires, and Jake has had weird "episodes" the past few days...I feel a "storm coming on." I don't know how to explain it, but I really did.

We got the car fixed. Picked up the kids and went back home.
I tell Matt, please rock Jake and let me know if you see anything strange.
He rocks , maybe 2 minutes and I hear "Christine, come here!"

"yes?" while running into Jake's "cowboy room."

"he did it!"

"he did what?"

"what are you talking about"

"he totally straightened up, was stiff and shook"

This was only a few seconds, but completely foreshadowed our life to come in the next week or two, if not the next year.

Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.(Psalm 27:14)

God Bless~ Christine

There really is a reason for the car story, Melissa and Mama Mia.....more to come;)

board games

A year ago yesterday, I noticed Jake's second seizure.

Matt was out of town. The kids and I spent a full day swimming, so we decided to have a nice relaxing evening playing some board games and watching movies.

Addison and I were on the floor, when Jake got up to do a "happy dance," or something of that sort for making a winning move in the game.

As he stood up he almost immediately fell tummy down on the board game, flopped for a brief second and then was up.

Again, my first reaction was to get angry with him for ruining our game setup.

I , again, started to interrogate Jake about his actions....

That's when i saw "it."

That look in his eyes.
He had no clue what had just happened and he was just as confused and dumbfounded as me.

This time, however, I did find it strange enough to call my mom and see what her thoughts were.

Since Matt was coming home the next day I didn't call him, but just decided to watch Jake and monitor him for anymore strange events.

A year ago today....

Jake had his first bloody lip from the BEAST.

He was sitting at the kitchen table eating a happy meal from "Uncle Donalds."

I was right next to him, probably swiping some fries, when it happened.

In a quick instant his head jerked straight forward into the table.

When he looked at me with accusing eyes, as if I had slammed his tiny face into the furniture, his poor little nose and lips were covered in blood.

This was the first of many bloody events caused by this damn beast. If I only knew then would would transpire over the next year.

For a righteous man falls seven times, and rises again. [Proverbs 24:16].

God bless~ Christine

a year ago..

today, is the day I noticed Jake's first seizure. Hindsight, I believe he had some before this day, but today was the first time I saw one staring me right in the eyes.

I took the kids to Costco, to find some retreat from the Texas summer heat. We did this about once a week. Most of the time we would not even buy anything, just take in the awesome things they had to offer and maybe even snack on all the samples for lunch.

Jake and Addison had just received an orange smoothie sample. We then made our way to the book aisle so the twerps could look at all the wonderful reads out there.

Right as we pulled next to the first selection, it happened.

Jake's arms flew back and his smoothie went flying.

It was certainly a brief second in time. A brief second that would transform the way we live and most certainly the way we interpret life.

My first instinct was to get angry at Jake for flinging his smoothie and almost hitting the pristine books waiting to be purchased.

Then I saw the look in his eyes.

I interrogated him for awhile.

I asked him "what happened?"

"Jake, did you do that on purpose?"

"why would you do that, that's naughty."

The kid was dumbfounded and his eyes told me the truth.

He had no clue what had just happened!

I quickly took the kids home and didn't tell anyone what happened, not even Matt. I dismissed it as nothing.

Nothing, however that "nothing" set a bad taste in my mouth for Costco and I believe it was not until maybe 3 months ago that I got the courage up to set foot back in that mega supermarket!

Hindsight, i think there was another incident a couple days earlier.

I was at Lifetime, getting my workout on with Abrea and Ms. Sarah. Then it came.

The dreaded teenager entered the studio. Dreaded, because everyone in the room knew somet unexpecting parent was going to have to cut their workout short, as their child either needed a diaper change, is crying, or got hurt.

It had been almost 2 years since I was the victim of the "call" and had to make the trip down the stairs to pick up my child, so I was smiling to myself waiting to see the poor soul who had to miss burning those extra calories.

Here she came...headed straight to me!
NOOOO... I only need about 15 more minutes!

I get down to the childcare center and there is Jake full of blood.
I ask another teen, what could have happened and I saw it.

That teens eyes were as big as saucers. Just like I would see in Jake a couple days later.

It did not hit me until mid September or November that this incident was most likely a drop seizure.

I will never forget the look in that lads eyes. The same exact look Jake gave me in Costco.

I still have yet to be back to the gym.

The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower. (Psalm 18:1)

God Bless~ Christine

tears

I laid down with sweet Jake tonight and this is what he said to me , as he wrapped his small arms around me:

"Mommy, I prayed real hard tonight. I prayed that these stupid seizures would leave my head."

"I asked him for no more pokes, and no more rides in the ambulance."

"I don't like to see you cry mommy, why can't these seizures leave me alone."

"I don't want to go to the hospital again, mommy...will I have to go again?"

As a mother this is heartbreaking! Why can't I help my son ?

I fear "they " are coming back.

I have been extra anal asking Matt and my mom what they notice in Jake. They reassure me, he still seems great. I am not so sure. His words tonight make me feel as if he feels something coming on.

God Bless~ Christine

wow!

I can't believe where we have been and where we are now! the following pictures don't even slightly capture the extreme, as this has all happened in the past couple months. And this is when it, the seizures, haves been "good."

This is Jake before steroids and during over a week hospital stay. Approx. a week before his 4th his birthday.

Jake on steroids.
and Jake now.

Wow, it is amazing how life changes right before your eyes and you don't even notice, as you are too caught up in "everything else" that is not as important as the things that really matter!

God Bless~Christine

It has been over 20 years

...that I have been attending Kaboom Town in Addison on the 3rd of July. When we moved here almost 26 years ago, my family and I always headed down the road a stretch to watch the magnificent show. Then as we grew older, we would go with our friends. Matt and I started going together when we began courting over 15 years ago.

We have now made the tradition of taking our new family.

Addison, Jake, Matt and I usually head over with a picnic dinner and save many spots while we wait for friends and family to join us. It is always a great time and through the years our "camp site" is ever expanding.

Then August 1st happened of last year. Many things have changed since then. One of them being the limits we are willing to push Jake to.

The Texas heat is well above 100 lately. Heat is a trigger for Jake.

Jake has been going to bed around 7:30 or 8:00, right after he has his medicines.

Fireworks don't start until 9:30.

Matt I and thought it was in Jake's best interest to sit this year out of the Kaboom Town festivities.

Papa came and got Addison so she wouldn't have to miss the wonders in the sky. They arranged to meet up with the usual crowd that greets us there and Papa would deliver her back afterwards.

Meanwhile, Matt and I hit the fireworks stand for Jakers. He knew it was that time of year to honor our soldiers fighting for our freedom, parades, swimming, food and fireworks.

We loaded Jake up with "poppers", food, and fun.

And just as expected, the kid hit the hay before 8:00.

Although, this year was a change, change is not always bad. Jake had a great time with us and we felt much less anxiety than we would have, having him push his limits in the Texas heat and long night.

We surely would have loved to have Addi with us as well, but are very fortunate to be blessed with a close knit group of family of friends that also take into consideration her need for normalcy.

Here are some pictures of our much fun filled July 4th weekend.

I do wish things could have been different and more like they were last year.

However viewing these pictures today and staring at the screen expecting the blue helmet to be back on his head, I am Thankful.

I am thankful that blue helmet is tucked away inside his closet, at least for now.

I am so thankful for how far we have come.

I am so thankful for our support system.

And I am so thankful for the many "good things" that this beast has brought us!

It has brought us an understanding, a thankfulness for each day, and a MUCH better appreciation of what is important in day to day life!

"If you concentrate on finding whatever is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul."~ Rabbi Harold Kushner ~

God Bless~ Christine

By the way don't forget about Erin Leyden at the AllStar game tonight!

http://www.suntimes.com/lifestyles/health/1663008,CST-NWS-epilepsy13.article

Wish?

I am awful and have the best intentions to blog our life happenings more often. I certainly thought summer was going to give me more time, apparently that proves very wrong.

We recently went on a short trip to Hot Springs, Arkansas. It was fantastic. It was busy. It was non-stop. And it was too short. It was GREAT times!


My good friend and her dear husband asked us to join them for a Lake weekend at Lake Hamilton. It is such a gorgeous place. We had NO idea a lake could be such a beautiful community.

This weekend was truly therapy. Joanna and Morgan were the most awesome host and hostess. There was never a dull moment. My checks and stomach truly hurt still from all the laughter that was had during this weekend.

We swam, we skied, we talked, we cried, we laughed and we RELAXED. I tell you, therapy.

Jake and Addison loved going tubing. They begged Morgan to take them again and again and he so graciously obliged. The kids even went water skiing!

Yes, our 5 year old and 4 year old went water skiing!!

Addison went the first day and got up like a champ. However, her mother, holding the other end of the rope, panicked and let go before she could have a good ride.

Joanna, had the honors of holding the rope for Jake. The stud got up and went almost 200 yards on his first try!!

The kiddos got to drive a boat.

and definitely wore themselves out!

Although the weekend was outstanding, there were also setbacks. Some I can not mention, but continue to pray about. Others for Jake.

Jake did have several tc's this weekend. It is hard to tell why, as he did get regular sleep and we did make sure he was in a cozy bed for all his naps. It was hard, sad, and discouraging. However, seeing that little boy, who a couple months ago could not hold his head up, walk a straight line, talk without slurring his speech, water ski...was nothing less than amazing!! he even had an audience on the lake watching jr. attack the wake!

Our kids rock and give us motivation to conquer each day.

We are sooo grateful and thankful for this weekend. Words can never explain to Joanna and Morgan what it meant to us. This was truly our wish come true.

Monday morning, recovering from the fully eventful, non-stop weekend, my cell phone rang pretty early. This is strange, as everyone knows I love my peaceful coffee time in the morn, while the kids either sleep or watch cartoons.

Hesitantly, I answer the call. The voice on the other end informed me that they were from the "Make a Wish" foundation.

Jake is going to be granted a wish!

I swear the Lake Hamilton weekend, to us, was a dream or wish come true, and to hear the words coming on the other end of the receiver that Jake was to be granted a wish were truly outstanding.

It is ridiculous, embarrassing, and amazing that this call even came to us.

Who in their life, would ever think their kid would ever qualify for make a Wish, much less be granted a wish.

Nothing ever happens "to you." That's what I have always thought. It's always "someone else" or a friend of a friend. I honestly still can't believe I write a blog about my son. It's not supposed to happen to "you."

We are better people for what we were given. It is not easy. However, we see the joy in the little things, that we used to not even merely see.

Thank you Butler's for an amazing weekend.

Thank you Make a wish for making Jake's dreams come true!

God is amazing!

rooted and built up in him, strengthened in faith as you were taught, and overflowing with thankfulness.

Colossians 2:7

God Bless~ Christine

Flooded Father's Day

We had an awesome Father's Day planned. We bought a bunch of food, drinks and had some friends and my dad over to hang out by the pool and eat.

Nothing like a day of sun in the company of great friends and family.

After many trips running into the house to grab something for the kids or bring more food out, I stepped into the laundry room.

That's when I saw it!

The flood of water coming from the wall and buckling our hard wood floors.

I run around through the kitchen and see the culprit. The shower and toilet in the middle of the house was clogged and the water was pouring from both, making our house it's own swimming pool.

This indoor swim area was discovered just moments after my dad knocked his tooth on the side of the pool. The knock wasn't the worst part. The tooth actually kept chipping away with every bite or even breath.

So while I am trying to call the dentist for my dad Matt is trying to call a plumber.

Last year, I believe, if this would have happened there would have been much, screaming, yelling and cursing. And we certainly would have thought it was the end of the world!

However this year, we kind of had peace with it. Crap happens, but this is minor compared to what could happen. We have two gorgeous kids, who breath, run, laugh and sing.

Several or even a couple months ago we were unsure what the future would hold for us. What was making Jake so sick and who was this beast that has invaded our house.

So as the water is piling up around my ankles , as I stare out the window at my beautiful children, who are swimming, diving, laughing and smiling, it hit me how afar we have come. We are blessed. I am so grateful and joyous for every "good day" the Lord has given us.

Even though my house is now taken over by loud, annoying fans, I will take this any day over the "what could be."

This is how the kids relax when the fans constantly blow breakers and we lose electricity. (they are watching personal dvd players)

Addison assessing the damage

The mass amount of towels that didn't even make a dent in the cleanup.

Even though it was a much chaotic day, we did manage to squeeze in some fun too.

Jake has been doing great. Well, I am not sure great is the correct word, but GREAT, AMAZING, and AWESOME compared to where we were. He still has been having nocturnal tc's. The weired thing is they happen at almost the same time every day, between 6 and 6:30 am. The doctor suggested we change his meds up a tad. He will be on the same dose and will not be adding anything new, however he takes different dosages at different times now.

He still is pretty tired, wanting to take two naps a day and is down by 8:00. His appetite has dropped a bunch, BUT aside from clumsiness, he is no where near where he was a coupe months ago.

His sentences are bright and quirky, he is fun loving, he can hold his own fork, He doesn't jitter, drool, or head drop. I can't believe where we have come from...it is truly amazing to me!

Here is an example of his clumsiness. Notice the two knots on his head, the scraps all over his chest and the bruising right over his VNS.

The scraps and bruising were caused, because the fearless fellow decided to slide on his tummy down this rock waterfall at his cousins.

The knot, because, when he slid his head hit the step of the pool.

The other knot, because when he regained his composure from the waterfall incident he dove into the spa and again hit his head.

Boys will be boys I guess. (you should see his legs! I like to blame his lack of coordination on the drugs, but truly it could very well be the grace he inherited from his mother:-))

Admiring his big cousin Wes!

and finally....this is why I have a hard time blogging lately...look what Big sister decided to do to her brother while mommy was occupied on the computer!! (little twerps :))

Being happy doesn't mean everything is perfect. It means you have decided to look beyond the imperfections

God Bless~ Christine

All 4 Jake- High Strung Classic by Matt Peters

High Strung Classic

Well the High Strung Classic has come to a close and nothing short of classic would describe the event. Last year was our first event which was basically brewed after John and Stacy's Bailey's weddding in Houston. As we sat around talking about how many fish we could catch and who had the best skills on the water, we decided to put the proof in the pudding and form a fishing tournament. From lure names of the "SuperDog" to "CroakerSoaker", the event was meant for a group of friends to meet in Port Mansfield, fish a little, and generate memories of a lifetime. With the group we have, the goal of making memories is not hard to come by. We have seen the likes of a fake sting ray thrown at the feet of a unsuspecting opponent, bad gatorade which lead to the quote "Move your feet", a 8' shark chasing us on the boat, the heimlech, a heimlech hero, and even a sighting of the late Johnny Cash, very rare, even in Port Mansfield. But the most touching was the idea that this year's event would be an awareness to Jakes condition.
Mid April as we approached the tourney season, John called one evening and asked if he could put together an event that would bring in friends and family to help raise awareness for Jake and our family. I was completely taken back by the offer and was excited that we could add a few more open ears to the cause. Behind the scenes, John began his work of organizing not only all of us yahoo's but many others whom do not know us. He called many of his friends, co-workers, vendors, customers and family to get involved with Jakes journey. After it was all said and done, John had doubled the tournament size and organized a top notch high class fishing tournament complete with sponsors, T-Shirts, prize money for the top teams, and a catered dinner for the awards cerimony. As I look back, seeing the boats lined up at the harbor waiting for the horn, it really hit me. The effort, time and dedication to get this organized in such a short period of time is truely remarkable and a test to John's ethic. The fishing was great! Everyone caught something, at least that is what was said during the weigh-in. At the weigh-in, we found that team "Gills Gone Wild" redfish and trout had what it took as the team cleaned house for both big fish awards. Newcomers, Phil Hanusch and Jeff Phillips, had the heaviest stringer and took home the coveted High Strung Brass. Congratulations guys and hope to have you back next year. As you know, fluke things like loosing a stringer with an Eight Pound Red in the eleventh hour does not happen often. Nor will it be forgotten!!
At the awards cerimony, we all ate well and John passed out the prize money to the winners. The laughs, ribbing of teamates, and discussion of the one that got away were surrounding every table. About this time, I notice John hushing the crowd and lets everyone know that there is one more thing to give. At this point, he askes me to join him up front as the group has collectively something to give. John unrolles a hugh check made out to All4Jake. It is a donation of $5445.00 to assist with medical care expenses for Jake! John, I do not have enough words to describe what you have done. All I can say is THANK YOU!! I know life is all about AH-HA moments and this one hit me right between the eyes. The fortunes in life are family and friends. The blessings we have received since this has all began are uncountable.
I would like to say thank you to all the support, prayers, encouragement and love we have received from the numerous amounts of people in our lives.

God Bless~ Matt aka "Petey" Peters

lunch anyone?

While I stepped away from Jake for a few short minutes, Jake decided to make his own lunch.

I have a normal 4 year old!

Two weeks ago or so, I don't think Jake would have had the energy to concoct such a plan.

He was so proud of his lunch. As much as I wanted to be annoyed and mad. I couldn't help but be so proud and grateful!

The kid is coming back to us in all his mischievous ways!

It has been almost 2 months since Jake has had seizures all day long.

I believe he has had a couple, if not more, nocturnal tc's. I wish they would all just leave this house, however I am so joyful that many have disappeared. God Is Great!

I pray that this improvement continues.

I think I learned to appreciate and treasure eachday, because you don't know how many you are goign to be given.

~ Sandra Day O'Conner

God Bless~ Christine

Vote for Erin!

I posted a link a couple weeks ago about a little boy named Emmett. He suffers from the same syndrome as Jake does. If you missed it check it out:

http://www.epilepsyoutreach.org/

Erin is Emmett's mommy and she created this website to raise awareness about Epilepsy.

She has been nominated for People magazines all stars. Please go here:

PeopleAllStars

click on Cubs

and vote for Erin.

This is an amazing opportunity to raise awareness about Epilepsy and it's many syndromes.

Please share this with friends and family, and remember you can vote more than once!

If you click on Emmett's video, you can see what we witness on a daily basis with Jake.

BUTTERFLY EFFECT: Let us all spread our wings to cause a wave of awareness and concern and flood the earth with the truth about epilepsy. Make a difference; join us as we change the face of epilepsy


God Bless~ Christine

Fishin'

I know I have been MIA, but can't wait to get back at it now that I am OUT OF SCHOOL!!! Yeah, more time for my own angels, as opposed to those I come to love and care for every school year.

I have much to report and dote on, but tonight a small little tid bit, and I promise I will keep up better.

One of Matt's best friends has made an annual fishing tourney into a awareness tournament. Matt has been down in Port Mansfield fishing this past weekend with an amazing bunch of guys.

I went to college with John and met his brother through him, obviously. At John's wedding last summer, a week or so before the "beast" entered our house, I met the most awesome group of friends and their wives as well. I felt like I knew this group of people, because they were so welcoming and kind.

Like I said, at this time, Jake was still, a normal kid.

Late July happened, and this past year has been a blur or doctors visits, hospital stays, ambulance rides, and a million different meds, however the people that love has and support us have been a constant.

Well, J.B, as Matt calls him, sponsored a fishing tournament in honor of Jake.

The boys and the group mentioned above, have made an annual fishing trip, The High Strung Classic, and this year decided to make Jake the honoree.

How amazing is that?

I have not been able to talk to Matt much this weekend, as fishing hours are absolutely ridiculous and cell phone range is iffy.

However, I can't wait to hear about the fun times that were had! This is a trip Matt most looks forward to every year and to have Jake be a special part this year is even more special.

Thank you John and the "Pasadena Crew!" I can't wait to see how it went

Here are the kids modeling the shirts that John, one of the most kind hearted men I have ever met, designed.

Those that know me know I look for or see symbolism in amazing daily acts. This weekend I saw the most amazing thing. I have never seen it before in my life. Addison pointed it out, and you had to look very closely to see it. Luckily my, sunglasses' obsessed, husband just purchased me polarized Ray Bans, or I may not have been able to notice this amazing spectacle!

This is proof that God is absolutely amazing! He was truly blessing us with great friends and great support this weekend. This is my sign! (I am an awful photag, but hopefully you can see the rainbow in mid sky.)

"My God, amazing is he

Giving you peace if you only believe,

faith is the key in time of need,

My God is amazing is he."

Deniece Williams

God bless~ Christine

Kidnapped!

I was kidnapped!

My wonderful friends invaded my house Saturday morning with coffee and bagels and instructed me that I had a hour to get ready!

They informed me we were going to spend the day at the spa!

What an amazing surprise. I still have no clue how they pulled it off, but they did. I knew nothing of the event. Matt managed to work with the girls to set everything up and even miss the Colonial (golf tournament) to stay with the kids.

I can honestly say I have never been soo relaxed in my life.


After my family bid me farewell, We arrived at a gorgeous old house turned into a Spa. It was so strange how in the middle of the hustle and bustle of Dallas, there was such a serene setting.





We started the morning with a hour massage, then we were whisked upstairs for manicures and pedicures.



The day was rounded out with a fabulous lunch and many hours sipping on wine and chatting with my dear friends.

I could not have asked for a better birthday weekend.

The time and effort that everyone put in to make this reunion is truly mind blowing. It's almost embarrassing that so much thought was put into making a special day for me.

My circle of Friends are truly therapy and I thank them for such an amazing and wonderful day. You girls give me strength! I am so proud and lucky to have you in my life. I am inspired by your acts of kindness, your sincere words of wisdom and seeing the outstanding women and mothers you have become!

I am so fortunate to have my circle of friends.

Matt was out of town for my birthday and our actual anniversary ,so he surprised me with these gorgeous flowers sent to my school.

To say the least, this year's birthday and anniversary were like no other.

Jake news

Well Jake has given us a scare lately.

I had noted last week that something was "not quite right." He slept the majority if the, drooled, and complained of his throat hurting.

I took him to his pediatrician and all the tests, including a strep culture cam back normal.

The nuero ordered a blood test. The blood test came back with very elevated Depokote levels. This was concerning because Depokote could have a side effect of liver damage.

We were then told to go get more blood levels to make sure his liver was processing the medicines correctly and that he wasn't in toxicity.

I just heard back from the nuero and apparently everything is fine! Phew!

As much is that is wonderful news, I still am unsure why he is acting this way.

Something is not right and I feel helpless that I can't help him.

"Two are better than one; because they have a good reward for their labour. For if they fall, the one will lift up his fellow: but woe to him that is alone when he falleth; for he hath not another to help him up." ~ Bible: Ecclesiastes

God Bless~ Christine

Memorial Day

We had a fun, long weekend. It gave me a glimpse of what this summer may hold, in only 8 more days!

The kids swam, swam, and swam some more. I am not quite sure how they managed to stay in the frigid waters so long, but they made it happen. They would emerge from the cool pool with purple lips, goose bumps, and shaking limbs, lay in the sun wrapped in towels to get some warmth back in their little bodies, only to once again, dive back in in a matter of minutes.

Our dryer got a major workout, as I always had a toasty towel, fresh- from- the -dryer -towel ready to go after each swimming session.

Jake has been wanting a mohawk for awhile now, so I did it! I took him to the hair stylist, to snip his gorgeous blonde locks off.

It hurt!

It hurt so much to see those curls fall to the ground and pile underneath his chair. However, Jake was proud as a peacock, sitting in that chair after telling the "hacker" he wanted a mohawk.

I made sure he knew "faux-hawk" would be sufficient and waited for the torture to end.

Hiding under all that hair is such a bloated little face. I am certainly ready for this balloon face to deflate. I am embarrassed that I don't have a better picture to share, but he is so busy lately, I have to take what I can get.

The kids had a great time cruising with Papa in his MG.

We all went to my brother and sister in laws house for some swimming yesterday.

The kids and I, before all "this" started back in August, would go, or try to go once a week during the summer and on Labor Day and Memorial Day to greet the troops who were coming back from Iraq for RR.

We had planned to go yesterday, however the 7:55 arrival time was a bit too early for my over sleepers. They were disappointed to say the least.

Jake knew we were heading to the Memorial Day party and announced "I can't wait to see the soldiers and give them hugs and say Thanks!"

He thought they would all be at my brother's, because the day was for them. He repeatedly asked me, "when will they get here?"

It has been a while since I have blogged. I am feeling a bit guilty about that, but finding the time while waiting for a seizure, is quite difficult.

Jake has been doing great in regards to seizure control! However, he is not "quite right." I am unsure how to explain it, but something is just off.

He stumbles, drools, can barely hold his eyes open, and takes 3 naps a day.

I know this sounds awful, but when he is on he is on and is great. I believe that is why the kid stays in constant motion. If he slows down or sits still, these side effects hit like a ton of bricks.

I can't say he has been "seizure free" for the past 2-3 weeks, as I think we may have had some little tonic clonics in the wee hours of the morning. These are only lasting 2-5 seconds, however they "are happening" so I can not therefore say we have been seizure free.

I watch him constantly just waiting for him to drop to the ground. The anxiety and tension that comes with this waiting is unbelievable.

I pray that this is the beginning to the end, but we can never be 100% sure of anything any more.

Never let the future disturb you. You will meet it, if you have to, with the same weapons of reason which today arm you against the present.

- Marcus Aurelius

God Bless~Christine

very interesting!

This is a very interesting article. It is particualrly intriging, as the Newsweek artcile on Epilepsy tounched on some of the key points a few weeks ago.

http://news.yahoo.com/s/time/20090520/hl_time/08599189975600

Thumbs up

Not quite sure why I am even bragging, but here goes!

Since our last doctors, Jake has had only a few seizures.

We went to the nuero 2 weeks ago tomorrow(we go back on Wed). Since then Jake has had only 6 tc's.

This may not seem like something to praise. However the "big ones" occurred over a course of 2 days and in the very early morning hours. Three one morning and 3 the next.

Jake has not had any other seizures to speak of.

His quality of life has GREATLY improved!

Unfortunately, we are now seeing what a four year old, spoiled, coddled, BOY, truly acts like.

As much of a pain in the rear he is, I wouldn't trade these past 2 weeks for anything.

He swims, runs, rides his bike, and even walks around the house without the blue helmet, that is now too small for his poor swollen face.

We can see our little mans blonde locks!

We can see his cheeks.

We can see his eyes with out the shadow that is usually cast down from the brim of the blue beast.

We can see Jake trying to fit in and be the four year old he has dreamed of!

It is such a huge change not being a prisoner in our own house.

The fear that comes with caring for a child who has seizures is huge.

It is such a burden to take him anywhere. The fear and the anxiety that comes with waiting for a seizure to happen, a drop to occur, and the glances, giggles, and questionable looks is miserable!

Besides the fact when we have ventured out, it is simply easier for me to carry Jake or push him in a stroller.

As you can imagine, people must think I am the strangest mom, to be carrying around a 40 lb boy everywhere.

Although I wish this was the end of THE BEAST, I know that Doose is a very difficult disease to control.

I am hopeful this is the beginning to the end and certainly pray for many more weeks like this come. However, I also know that it could indeed get a million times worse than where we have been.

Nonetheless, I am so very grateful and blessed that God has given us the past 2 weeks!

To see the joy in his eyes and the fear alleviating for Matt and I , is enough to last a lifetime.

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
Isa 40:31

God bless~ Christine

Become Aware!

http://www.msnbc.msn.com/id/3036789/#30742751

"Very few people really see things unless they've had someone in early life who made them look at things. And name them too. But the looking is primary, the focus."

~Denise Levertov

God Bless~ Christine

Honeymoon's over?

Well, I have hated to even say anything, as every time I do.....seizures happen

We had an awesome Mother's Day yesterday! Absolutely Amazing!

We actually did work, and alot of it, but also relaxed, swam, and cooked chili-dogs for dinner

Jake hasn't worn his helmet for 6 days!

Jake rode a bike for the first time since August!

Jake has not fallen from a seizure

Jake went swimming!

Until this morning, Jake has not had a seizure, a twitch, a weird jerk, or slurred speech, since last Wednesday!

Matt and I are very superstitious, so we had not spoken of this glorious news, until last night, poolside, babies tucked in, finally daddy in town, and able to sit with mommy by the pool, in the yard that he has worked so hard to transform.

We finally talked of the greatness that has been the past 6 days.

We checked in to bed.

Then IT happened.

Matt and I heard a loud crash. To me it sounded like thin glass shattering.

I didn't have time to think, just react.

I ran to check on Addison...she was fine..then Jake...he was gone!

I ran and told Matt he is gone, he went for the pool. Jake has slept walked, since he started walking at 9 months old. Most of the times we would find him looking out the back window, at the pool, asking to go outside, while dead asleep.

I was certain this happened again, except this time, Jake had broken the window and had made his way outside

UNTIL.....Matt reminded me Jake had crawled in bed with us 6 hours ago..and he was still as snug as a bug in our bed...OOPS.:-)

So this was 3:00 am...Jake heard us awake and never went back to sleep..he wanted macaroni and cheese, to watch Scooby, and to go swimming, but he was safe with us.

His being awake I think is the cause, that broke our 5 day cycle....he had 3 TC's this morning.

I guess the Honeymoon is over, however I pray that this is just a layover or flight delay, before we get back on our way.

That sucks! truly sucks!

However..he had no more seizures all day long! YEAH!

Besides being a swollen, bloated, hungry boy, the kid is doing awesome.

Therefore I have had the BEST Mother's day ever!

Again, I pray for many more miraculous days like this again.

I believe it is because of the power of prayer from the people that love us and read this blog, that we are blessed with weeks, like this past week.

Epilepsy can be a beast. However, we feel like kicking some ass..and this beast will not get the chance to hang out much longer!

There the angel of the LORD appeared to him in flames of fire from within a bush. Moses saw that though the bush was on fire it did not burn

Exodus 3:2

God Bless~ Christine

(By the way the LOUD crashing, noise, that we thought certainly was an intruder robbing us of our children, was the shower clip that holds loofahs and razors.:-))

Here are some pictures of the twerps enjoying the day in the pool

Happy Mother's day

I hope everyone enjoys this day as much as I have been!
I am so thankful for the amazing past several days and pray that there are many more to come.

This is surely one of the most wonderful Mother's Day ever.

Besides the fact that Matt wrote me a love letter! Yes, an actual love letter. He loaded me with gifts. The kids crawled into bed with me bright and early and scratched my back and massaged my feet, and we just finished a much needed walked.

Happy Mother's day to all the wonderful moms I know, especially Babi and Granny.

You ladies grace us with so much love, understanding, and patience during these difficult times.
Thanks for all you do for us!

Love you!

Mother love is the fuel that enables a normal human being to do the impossible.

~Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother's Soul

God Bless~ Christine, Matt, Addison and jake

Craziness at the neuro

We had a neurologist appointment on Tuesday in Fort Worth. A bunch of changes were made and are going to be made in the near future.

As it was close to nurses day, Jake took boxes of cookies to his EMU , Epilepsy Monitoring Unit, nurse and friends. He loved seeing their faces and they squealed in delight at the treats, and to see Jake again.

We then headed back down to Dr. "H's" office and handed out more cookies. Jake loves giving and gets so much joy in being appreciated.

As "Dr. H" came in to take a look at Jake the craziness began!

The doc watched in humor, or horror, as Jake drove the stroller into the chairs, cabinets and tables, emptied every single object in my purse ,ahemm...including personal objects, in the quest for a piece of gum, not once but twice,and tried repeatedly to sanitize Dr. Hernandez's hands to "protect him from Swine flu."

The kicker and ultimate decision making moment, besides the fact that Jake has packed on the Lb's, and his little face looks like a balloon ready to pop, was when Jake kicked off his Crocs and they whizzed by the nuero's face, narrowly missing his head.

This actually produced some laughter from the, always serious, neurologist.

We then decided that because his seizures are not under control, and the weight gain, and obviously his rowdy behavior, we would do a faster wean off the steroids. We then are trying a different drug, Febatrol. So Jake will be back on 3 meds.

We go back in two weeks for a final VNS adjustment, and to reevaluate the "seizure situation."

Some options would be to start a diet at this time. We can not start it yet, because of how the steroids change the "make up" of the body.

With that being said....Jake actually had a really good evening last night and wonderful morning today. Usually when he awakes I beg and plead for him to stay on the carpet, as he has no coordination, loss of balance, and simply can't even hold his head up.

This morning was quite the opposite. We had a great morning, talking , laughing, WALKING, and running with no complications!

I seriously doubt that it could be the new drug already taking effect, but I guess it could be the wean from the steroids? or maybe just a "random good day."

I don't care..I just am so thankful to go to work and not be so stressed worrying what is happening to my baby. t was so awesome to see him laugh, eat, joke and talk with out shaking, drooling, slurring, and falling.

Hopefully the rest of the day transpires to be as phenomenal as this morning.

Jake has baseball practice this evening. he loves it...However I don't know if Daddy is looking forward to the stress of coaching a hyper boy that would rather play in the dirt than catch the ball, all while awaiting seizures, and the stares that come with them.

“Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.”-

1 Thessalonians 5:16-18

God Bless~ Christine