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

Mac and Cheese if you please

Steroid boy is OBSESSED with mac and cheese!
Not your normal Kraft macaroni and cheese, but the good fat filled, homemade, simply easy mac and cheese that his mommy makes.

Not only does he want it LITERALLY, for breakfast, lunch, dinner and snacks in between, but he even wakes in the middle of the night asking for it.

I wasn't going to mention it, until now, after almost 3 weeks of his little obsession.

I even held out and was not going to buy the "elbow macaroni" and Velveeta cheese. However, Matt went to the grocery store for the BIG weekly trip and I whispered "get him elbow macaroni and Velveeta, and whipping cream."

I was going to "sneak" in a meal or two for Jake.

The little rat saw Matt unpacking the groceries and saw the elbow noodles and FREAKED!!
I kid you not the child ran around yelling "Daddy got me macaroni!" The weird part is I buy a different box of noodles, so how he saw the bag of noodles and knew, blew me away.

The child then proceeded to sit at his chair waiting for the mac and cheese to be ready. Through the boiling processing, the draining stage, and the melting and mixing phase.

He then ate almost 3 times more than Matt did.

Besides the fact that the roids have made him "rage," and bloated, the sweet angel can not get enough to eat!

I just wish they continued to stop the seizures, as they did in the hospital.

There is no love greater than the love of food.

George Bernard Shaw

God Bless~ Christine

The beast is back

We had an awesome 3 days! Monday, Tuesday, and Wednesday were totally amazing.
Jake had not one seizure!
He did not shake!
He did not stutter, slur, or drool!
He even did not wear his helmet to play around the house.

Those 3 days were a blessing.

Now, however, the beast they call Doose Syndrome is back with a vengeance.
Yesterday Jake had 5 tc's.
Then later in the afternoon, the absence seizures started back.
This morning he had another tc and the drops returned.
I fear we are going back to over 50 a day like he was having before the hospital stay.

This inconsistency of seizure control and lack of medicine to cease the seizures are some characteristics of the beast that invaded our house in August...The beast called Doose Syndrome.

Doose Facts

*Myoclonic-Astatic Epilepsy usually occurs in children with an uneventful history; there is likely to be no pre-existing neurological disorder.

*It clearly affects more boys than girls at a ratio of about 3:1.
In 24% of the cases, the epilepsy starts during the first year of life (at 2, 4 or 5 months of age).

*In 94% of the cases, the epilepsy starts within the first five years of life.

*In 100% of cases, the child develops myoclonic and/or myoclonic-astatic (or drop) seizures. The -astatic (loss of muscle tone) feature of the myoclonic-astatic seizure is rare and unique to MAE, and is the most important and distinct feature which helps differentiate it from other syndromes.

*In addition to myoclonic seizures, children may also have a combination other generalized seizures including tonic-clonic, absence and non-convulsive status epilepticus and, rarely, tonic seizures. See Seizure types.

* MAE is rare, representing only 1%-2% of childhood epilepsies.

*MAE is characterized by difficult to control seizures that often occur throughout th eday. The can possibly impair a child's learning and development opportunities.

This information was taken from the following site:

http://www.doosesyndrome.com/index.html

PLease visit the site and learn about one of the many different faces of Epilpesy.

Life is a series of experiences, each one of which makes us bigger, even though sometimes it is hard to realize this. For the world was built to develop character, and we must learn that the setbacks and grieves which we endure help us in our marching onward.

~ Henry Ford

God Bless~ Christine