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