Race for wishes

ON Saturday we got up bright and early for some family fun running!
We participated in our first 5k as a family, the Make a Wish Race for Wishes.

It was a blast!

Jake was so excited he even got up and dressed himself.

Being almost 8 months pregnant, Matt never having run a race, 2 small kids and a grandpa, we were very unsure how long we would last on this cool, windy morning. We even threw around the idea of ditching the 3.2 miles and runnig the 1 mile Fun Run instead.

However, the momentum and energy of the event got the best of us and we all finished the 5K!

Before the race Jake got to meet up and superhug one of his wish givers Christine!

Addison did a super job and ran the entire time, except when she had to stop and walk to wait on her pacers, Matt and Papa.

She can't wait to run another race.

Jake and I alternated running and walking. He did a great job and I was so very proud of him. As he approached the finish line his adrenaline got pumping, he picked up his speed, and he was grinning from ear to ear.

The crowd energetically cheered for the "little wish kid wearing the green shirt." Jake followed, and also cheered for himself. This kid never stops smiling, but I don't know if I have EVER seen him be so proud of himself.

As I parent, as I watched him cheer, run and smile across that finish line, the past year flashed in front of me.

Was this the same kid that a year ago, almost to the day, couldn't even hold his head up, much less walk?

Last year at this time, we spoon fed him all his meals in a highchair or on the floor surrounded by pillows.

Last year at this time, he would go through a couple shirts a day, as they were quickly soaked from his excessive drooling.

Was this the same child, who had sat in the ER far too many times in 9 months, waiting to be sewn back together?

Was this really my son running toward me, who was basically in a drug and seizure induced coma for 9 months of his life....just a year ago?

All these thoughts swirled inside my head in the brief moment as I saw the complete elation in his little face as he crossed the finish with a cheering crowd backing his every step.

That moment, with my daughter as happy as a lark from completeing one of her first milestones, my husband and family by my side, and my little hero dashing toward me, I am quite sure I have never been so thankful, nor proud to be a mommy in my life!
 My kids are fighters!
 They sure as heck can conquer any darned obstacle thrown at them.

The Make a Wish Foundation is so much more than I ever thought it was! For them we are Thankful! They truly make wishes and dreams come true!


Let us rise up and be thankful,
for if we didn't learn a lot today, at least we learned a little,
and if we didn't learn a little,
at least we didn't get sick,
and if we got sick, at least we didn't die;
so, let us all be thankful.
- The Buddha

Purple Day!

Friday was Purple day for Epilepsy awareness.  This is an international event gaining more and more speed every year.  This year my coworkers supported the efforts  and they all donned purple for Epilepsy Awareness.

This Friday was "birthday breakfast" and my department was hosting this month.  We all get together and bake and cook breakfast to honor all thebirthdays in that month.  I got there early to set up, but soon become overwhelmed emotionally and had to duck out for a second.

As more and more faculty and staff took their place in line for the great buffet, I could not believe my eyes.  The lounge was overflowing with purple!

People were even metioning they had heard radios discuss this special "Purple Day."

I am not a huge fan of purple, but to see everyone backing us and showing their support was so, very touching and I could not get enough of that color I once despised.

I think to the majority of the purple wearers, it was simply an excuse to get to wear something other than ther Apollo spirit wear to school with their jeans.  However, it was soo much more to me.  To see soooo many wearing this color was so amazing.  I can not Thank them enough for their great support!  When I announced that our bossman had ok'd the purple wearing instead of our usual Friday spirit wear I was certain we would have a few supporting me, but never almost the entire school.  I am the Special education dept. dept head and I know sometimes when I am chasing teachers down about IEP's, or students needs, of questioning them about TAKS, I am not their favorite person.  So seeing this sea of purple was extra special.

One of my coworkers whom is an avid baker, cupcakes being her speciality, even went as far as to offer to bake purple cupcakes for this special day. Apparently, Mrs. Harper in her endless search for the perfect cupcake, had run across the Great Purple Cupcake project

She made several dozen cupcakes for the day to be sold benefitting the stroll for Epilepsy, Team All 4 Jake,  and the Epilepsy foundation.
Dallas stroll for Epilepsy,
>
Needless to say I was blown away about the efforts of my fellow Panther's and Mrs. Harper.

Thanks fellow Panthers!  You make each day a little easier!
I am sure proud to be a Panther!

"Love and kindness are never wasted. They always make a difference. They bless the one who receives them, and they bless you, the giver."

What was that?

I got a great email from Jake's teacher the other day.  I hound those ladies at his school, on a daily basis, to try and keep up with his accomplishments, areas in need of improvement, and for the daily seizure count.  I am certain, they are ready for this school year to be over, so the crazy lady with the ADHD boy can move on to someone elses room!:-)

Mrs. McVay, or Ms. Vay, as Jake calls her, was reporting that Jake was having a great day!  However, she also added some extra details that had me in tears with laughter.

Jake is very spolied, to say the least, by these amazing group of teachers in his class.  During nap time, in order to keep him quiet, and to closely monitor his tc's, Jake's sleep cot is positioned very near these girls.  He LOVES it!  Well, apparently, on this particular day, Jake decided to conjur up some conversation berfore he drifted off.  His conversation went as follows:

"He did tell me as I was sitting there with him trying to get him to go to sleep that I “needed to wear more clothes to cover up my boobies” hahahahahaha! So I covered up with my cardigan and he was like, “I can still seeeee themmmm!!” He was dying laughing. It was pretty funny. "

This statement came on the tails of another similar incident at the grocery store  just a couple days earlier.  Therefore, I was hysterical with laughter.

On Sunday , Jake and I went to the grocery store. As I picked out some flowers in the floral dept., the florist asked Jake if he would like a balloon. He , of course, said yes.  She gave him a bright blue balloon, which he quickly popped.  She then went and got him a new one.  This one, however, was complete with a little clip, to weigh the balloon down, so it wouldn't float away.  The clip could also, obviously be used to clip the balloon onto his clothes so he won't have to mess with hit.  The florist then proceeded to clip the balloon on Jake's jean pocket.

Before I have a chance to take my precious son, by the hand and turn to leave, he turns to her and asks:

"Can I clip it on my penis?"

I almost asked him "what was that?" as I was certain my little angel did not just say that, but then it clicked...yes he did.  I am not sure I have ever moved so fast away from one particular scenerio in my life.

Where does he come up with this stuff?

"Kids say the darndest things!"

The white stuff

Only in Texas! This is what our second day of Spring looked like. I could barely believe my eyes, as I peered out the window this past Sunday morning. Of course , I heard the forecast of snow, but never imagined the magnitude we would be impacted.

 

Addison thought it was great. The minute her feet hit the floor out of bed, she was already grabbing coats, scarves, mittens and hats! The rest of us were not so excited. The warm coffee, while wrapped in a cozy blanket on the couch, reading the Sunday paper was far more inviting, than the cold, wet snow.

Jake tried to brave the blustery wind and wet for a little bit, but much rather preferred to observe the action from indoors....smart kid!;-)

and to think just a few days prior, we spent our days of Spring Break riding bikes, taking walks, having picnics, and playing at the Dallas Arboretum.

You have to love Texas weather!

 

 

 

 

 

We had a BLAST at the arboretum this year...as always! But for the first time, we were able to get the twerps faces painted. usually, the line is literaly a wait of a hour or more. However, for some reason this year, we were one of the first families to snag a spot. They were so proud of their new creations. It was so much fun.

In Jake news....he has been improving or rather, we have had some improvement, after the steroid treatment. However, unfortunately, he still is fighting off nightly nocturnal tc's. They are much shorter, than even noted on video a couple posts ago, but they are still present.

Damn Beast!

For the LORD your God is the one who goes with you to fight for you against your enemies to give you victory."
Deuteronomy 20:3-5

The wedding

ON the day Jake got home from the hospital, Matt wanted to take us all to dinner. Jake took a shower and was urged to go get dressed, while Matt and I got ourselves ready.

When I finally emerged from the bathroom after my primping, this is how I found our son.

He informed me he was ready to go to dinner. I told him he couldn't go like that. He then responded "well, when I go to a wedding this is what I am going to wear!"

Nocturnal tc's

Damn these darn things!

They are back.

So is my disappointment.

I REALLY thought "this was it!" I knew it was a long shot, but I simply just had "that feeling!"

Jake, aside from the tc's, has been doing AWESOME, though! His critical thinking, memory, talking, and coordination are just amazing to me. I had thought he had been so much better for a while, so it is such an astonishment to see how much he can continue to improve and how resilant kids are!

I truly believe his attention is TONS better too. For the first time, maybe ever, he sat and we played a good 45 minutes worth of board games Sunday night. Usually, board games, would last maybe 5 minutes, and that was on a good day. For him to sit 45 minutes and stay on task, was nothing short of a miracle to me.

His teachers have been reporting similar stories at school.

He still has much room for improvement, but for now I will rejoice these baby steps.

Although, I am very pleased with the positive side effects of Jake's steroid treatment, unfortunately the seizures are back.
For the past two nights his seizure activity has been quite active. Last night he had at least 4 nocturnal tc's.

Nocturnal seizures are usually tonic-clonic. They might occur just after a person has fallen asleep, just before waking, during daytime sleep, or while in a state of drowsiness. People who experience nocturnal seizures may find it difficult to wake up or to stay awake. Although unaware of having had a seizure while asleep, they may arise with a headache, have temper tantrums, or other destructive behavior throughout the day.

Eventhough, he has had seizure activity and maybe even increased seizure activity, we are going to try and follow through with the rest of the 9 day wean of his oral steroid, prednisone.

Last night, as Addison and I watched meanigless tv and Jake fell into a slumber beside us, his seizures started. We were able to capture a couple on video. This is what we see several times on most nights.
(As this one seeems longer than many, you will see me swipe the "bump" on his chest. I used the magnet to activate the VNS, vegal nerve stimulator)
(


I see these in person quite often. But witnessing them on a screen, is pretty disturbing. I absolutely can NOT believe that I am watching my little baby boy. His contorted face and body, the weird noises, the helplessness....how is that my precious son?!

He has been battling this beast for about 18 months and I simply can't believe this is my son. I have watched him fall, bleed, cry, slur, drool, seize, and completely regress. I have accepted it all, but seeing it on a screen is absoutely unbelievable. There is no way I am watching my baby boy!


No matter how steep the mountain - the Lord is going to climb
it with you.
- Helen Steiner Rice

Normal , at least for now

We are out of the hospital!

Matt was with Jake , as he was admitted Wednesday for the BIG steroid treatment. While it was absolutely killing me, being away from him and not being able to be the one to interrogate the doctor and nurses with questions, I needed to stay at work for in the infamous TAKS test.

I arrived Thursday morning with Addison. We relieved Daddy of his duties. Addison also met and talked with the child life specialist. She has been a having a tremendously difficult time watching Jake continuously seize and be shuttled to and from appointments and hospitals.

The meeting , along with weekly counseling sessions at school, have had a very positive effect on her. She still gets very weepy and sad watching Jake and his everyday struggles, but also understands it a bit more now.

It is so heartbreaking watching both my babies struggle so much emotionally and physically. I want to just yank It from both of them and protect them from all of this.

As we arrived Thursday morning, I was disappointed to learn that Dr. H had already met with Matt, therefore I probably wouldn't be able to bombard him with questions!

Matt however reported that Jake's last seizure was the previous night. That was great news.

Dr. H ended up coming back around Thursday evening and informed me that Jake was doing great! Not only did he look a lot better, so did his eeg!

It turns out by the time we left Saturday morning, Dr. H used the words 'normal" and eeg in the same sentence!! This has not happened in at least 18 months!

You can only imagine our elation right now! I realize things could make a turn for the worse, as they did August 2008, but for now I am praising God!

Not only does his eeg, look very much improved, but so does Jake.

He is definitely swollen from the treatment already, however he is doing so well!

His mind and his conversations seem so real, normal, and clear. I find myself just staring at him while he talks, wondering how things can turn upside down so quickly.

He laughs, he remembers, he jokes, he speaks so clearly the past two days. I am beside myself with glee! I have said it before, but I guess I didn't realize how much he could truly improve. Even his drooling and his gait appear so much better to me!

I honestly can't quit staring at the kid and waiting to hear what comes out of his pretty, little mouth next.

I am , however, cautiously optimistic. We will take one day at a time, but for now we will live and love in this moment! Because here in this moment, with my family all in own house, and healthy for now, I am elated and could absolutely not ask for anything more. I have all I have ever wanted! I could not ask for more!

"I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail." ~Lamentations 3:19-21

Darn it man!!!

Well DARN IT!!!

Since Monday morning Jake had not had a seizure!! I read from some very wise Doose mommy's on an online support group that giving OMega 3 vitamins might help with seizures, clarity, and/or overall general health. What the heck, I thought and gave it a try, it certainly can't hurt! So since I had started giving it to him, Jake has not had a seizure! Not at nap , nor during the night......until yesterday.

At school, his awesome teachers, Ms. McVay and Mrs. Chavez, reported that Jake had a pretty active nap, regarding seizures!

Damn it! that's what I get for opening my big mouth. About the same time my little guy was seizing, I was telling this same support group about our suspected success with Omega 3.

Unfortunately, Jake was a seizing machine last night as well. I think he had at least 4 maybe 5. A couple of these a considerable amount longer than usual. usually these nocturnal tc's will stop as quickly as they started, in a couple of seconds. However, last night a few of these damn things were between 10-20 seconds.

I am very glad we have an appointment to be admitted this Wednesday.
We are praying that Jake will receive as great of birthday present, as he did last year!

After last April's steroid treatment, his last drop was on his 4th birthday, April 29th.

Although, I look back at his birthday pictures and can't believe how big and swollen he was from the treatment, and still can't imagine and barely believe the life we were living last year, I am soo very thankful for how far we have come!

I pray the same gains for this year!





Leaving that blue helmet behind!



Our dreams must be stronger than our memories. We must be pulled by our dreams, rather than pushed by our memories. - Jesse Jackson

TAKS time

It's TAKS testing time here in Texas, which means little time for me to post , as I try to get tests in order for all my students and meanwhile try to prepare for the test itself. Novel thought, being a teacher and actually teaching.

Because, it is such a busy time of year, it is difficult for me to keep up with blogging. So here goes a quick update.

Jake will be going back to Cook's next Wed. He will be admitted for 3-4 days for another round of steroids. The hope is to once again try and kick some Epilepsy butt, and make these darn nocturnal tc's away!

While I am comfortable with where we are and our daily living. There is certainly room for improvement. Jake is still having 2-5 nocturnal tc's a day. Just when I think things are great and he won't have ANY for a couple days, they will come back longer and more intense.

Therefore, we are going to try and beat this beast down, so he and his little friends will not come back!

Wish us luck!
We have our game face on and will show no mercy!

Never give in.. never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force.. never yield to the apparently overwhelming might of the enemy.
Winston Churchill

Happy Valentine's Day!

Hugs and Kisses from Addison and Jake!





And an out take. Jake was still recovering from a bout with a virus and did not appreciate being outside in the cold. His big sister had more sympathy than I did apparently. I was working for the shot!:-)


Since last week a bunch has changed. We tweaked Jake's meds a couple a weeks ago and it started out great. We even had a 3 day stint with NO SEIZURES!!!

However the minute I bragged about this feat, i got a call from his school and he had , had two seizures during nap.

Damn it!

That's what I get for opening my BIG , Fat mouth.

So, since Monday, we are back to having 1-3 seizures a night and 1-3 during naps at school.

Six seizures max sounds great to me for some reason; and I don't even blink an eye. I assume coming from where we have been the past year and a half so much has changed for the better, that the only way to go was up.

When Jake seizes, for the most part, he is safe in a soft bed and peacefully sleeping for the most part. Although these tc's still scare the crap out of me and I find my heart skipping several beats when I witness them, I am sooo damn thankful, we have not seen myoclonics or drops since Jake's birthday last year!

You can't have a better tomorrow if you are thinking about yesterday all the time
C. Kettering

Geaux Saints!

I know, I know. We are typically a Dallas Cowboy loving family. However, while Jake was staying at Cook Children's for a week, the week before Christmas, a little transformation was going on!

One of Jake's favorite nurses/EMT's conducted a little brain warping. (it's very hard to say "favorite" ,as Jake adores everyone at Cook Children's, but Richard is pretty close to the top) Nurse Richard taught Jake to chant Geaux Saints! Richard is a true Cajun' and has an awesome, distinct Cajun' accent to prove it. Jake loved to hear his nurse simply talk to him with his mesmerizing twang. To this day if you ask Jake who he wants to win a football game, any football game, he responds :

"The Saints!"

So, at least for today, this house will be cheering for the New Orleans Saints!


Good news for the day!

Jake has been seizure free since Friday morning!!! No nocturnal tc's!!! I surely hope this 2 day streak lasts! (KNOCK ON WOOD)

Geaux Jake!
Geaux Saints!

Some people are always grumbling
because roses have thorns;
I am thankful
that thorns have roses.
Alphonse Karr

Surprise!

The kids have something to tell you!

Jake and Addison are going to have a baby brother!
They are beside themselves, to say the least! They read to him every night, have named him, and are constantly touching and kissing the sweet boy.

I have been waiting for the "right" moment to announce this surprise and figured today is as good of time as any.

Yesterday we had our 20 week sonogram. It is always such fun seeing the miracle inside of you grow, wiggle, and develop.

the good news:
The baby looks great. he was a very active little one, putting on quite the show for us on the monitor. It is truly amazing and breathtaking how little he can be inside my belly and how much you can actually see from a simply sonogram...just astonishing.

I went into the appointment thinking I was 19 weeks and a couple days. However, after a very long and intense sonogram, it looks like I am 21 weeks and a couple days. So, little man should be expected to make his arrival in early June!

The bad news:
I thought the sonogram tech was simply trying to give me tons of pics of the little guy, therefore having the sonogram last about a hour. However, I soon realized that something may be wrong.

Apparently my umbilical cord only has one vein and one artery, a condition sometimes called SUA. A healthy umbilical cord should have a vein, supplying the baby with the food, nutrients and oxygen he needs, and 2 arteries taking the junk out from the placenta that the baby doesn't need. I only have one "junk drain." This can cause many problems and birth defects with the baby. Although, this is a VERY scary diagnosis, especially if you are stupid enough, like me to google it, I am optimistic that "Miracle , Oops baby" will be just perfect!

The course of action right now, is simply for more frequent trips to the doctor to measure the baby and take some pictures.

Please say a prayer for Baby Peters! We are so blessed to be given another chance to be parents!

Jake news:
Jakey boy went through an awesome seizure free patch about 2 weeks ago. He had no nocturnal tc's we caught, and besides some battered and bruised limbs, the boy has been great.

Then...we went to the doctor last week and bragged about his period without seizures. Call it a Jinx, but now he is having 3-5 tc's a night.
I called today just to inform the dr. that from my last status report things have changed. i expected nothing to happen form it, but just for it to be journaled.

I recently heard from the nurse and she said Dr. H was taken back by this news and 3-5 was DEFINITELY too many to be having every night.

Therefore, I am to tweak some medicine. If the tweaking does not bring positive results, we are back at Cook Children's for another round of steroids and oral steroids once we are released.

Seriously, does this roller coaster ever slow down? because I want to get off!:-)

Please say a prayer for Jakerdoodle as well.

A dear friend and coworker sent me a couple verses today. Although I have read and heard this one many times, it really stood out to me on this day.


11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart.
Jeremiah 29:11-13 (New International Version)

(picture to be added later today)

Help for Haiti

We had a very fun and busy weekend. I skipped almost all of the much needed work that needed to get done around the house to hang with the kids, run errands, and go to parties. On Sunday, before Addison was to attend another party, the kids had a lemonade stand.

This wasn't any regular lemonade stand. All the funds raised are going to a Haiti relief fund.

The kids have been watching the news and, of course, the coverage from Haiti is all they have been seeing. They also caught glimpses of the huge telethon on Friday. When little minds see things like this, it is obviously very difficult for them to comprehend the magnitude of the disaster that is actually taking place.

After, what seemed like hundreds of questions about the earthquake and the effects it had on the country and its people, they, or Addison finally seemed to get it.

She explained to me what the children over there don't have, including a St. Jude!:-)
She was beside herself and wanted to help.

Not knowing how, I was reminded of a High school who posted on Face book that her kids had a lemonade stand to raise money for Haiti and to help her kids understand the magnitude of devastation.

Therefore, this is what Addison and Jake decided to do as well. Within less than 2 hours of "work" they raised 60$! I was so proud of them! They explained to all the customers where the money was going and why they felt they had to give. I have to admit watching them work so hard to to explain and sell their product certainly brought a tear, or several, to my eyes! If I said a tear, I would be lying, as it can only be described by that big lump you get in your throat caused by such pride for your little ones, and emotion because of their actions.



To learn more about what you and your children can do together to help others around the world please visit:

www.kidswithcourage.eventbrite.com

"You must love and help your neighbors just as much as you love and take care of yourself." (James 2:8)

seriously?!

I seriously need to get better about popping in and blogging. I am getting so far behind updating on the craziness that is , "The Peters household."

This weekend was certainly no exception to the crazy rule!

Matt was out of town fishing, so I enlisted some help from Babi and Papa in shuttling the twerps to and from their many activities. The kids and I grocery shopped and ran errands.

On our last errand of the day, Addi and I were unpacking goods from the kitchen, waiting for Jake to come in from the garage, as he is always the last one in, because he finds it necessary to explore the garage for hidden treasures EVERYTIME we park. It is even more fun to him now, as Matt has done an excellent job reorganizing, the pit, we call a garage.

It had been a couple minutes so Addi and I start to holler for Jake to come in. We finally hear him, and then the door slam, and then an "ouch!"

I advise the booger bear to come to me in the kitchen so I can kiss his boo-boo. he doesn't come. I then, more harshly tell Jake to come here, as it is pretty quiet now. He then yells to me..."Someone open the door!"

I am dumbfounded, as he knows exactly how to open the door and he is inside now, where he is supposed to be.

after a few seconds, i go to help him.
There he is, looking up at me with a worried look and says "puh-lease, open the door."

I look again, and his hand is completely shut in the door on the hinge side.
We open the door and get his hand out, and thankfully all parts are still attached! PHEW!

However, I couldn't get the tip of his fingers to get circulation....so I wait, and wait for the tiny tips to get pink again.

After much chaos, and many phone calls, Jake and I head off to the er once again because circulation is not coming back
.
The hand , after being xrayed, was not broken and circulation was now fine. He did however have a nail that was about to fall off, and most likely a sprain. So we are sent home with a hefty little splint and a smile.

the following day Jake had his first bowling birthday party. I urge hm to bowl with his left hand , as his right is still in a splint. Not 30 minutes into the party it happens...he hurt another finger on the other hand.

I refuse to run to any Dr. after the previous nights expeditions, so I kiss it and assure him it will be fine.

As the hours and days go by the newly injured bowling hand, gets more and more swollen, and more and more purple.

I tell myself that I will ask Dr. H about it at his routine neuro appt.on Tuesday.

The neuro appt. was great! I felt as if it was a very positive one.
When I finish rattling off a trillion questions, I nonchalantly ask Dr. H, if he thinks Jake needs an xray or if he feels it is just a sprain. He plays it safe , of course, and sends us upstairs for an xray. About ten minutes later, I was told that we need to head back down to orthopedics, as it did look like he broke his hand/finger!

so we returned downstairs to orthopedics and it is confirmed that Jake has a fracture and needs another "cast" on his other hand!

Needless to say, Jake LOVED the attention and is very proud of his "new hands!"

Tuesday was a very busy day for us, but the "one stop shopping" while at Cooks was great. Like always we were treated fantastically and I can only imagine how much worse all the dr.s and waiting could have been.

Here is a pic of the little trooper. Unfortunately I only have a fuzzy one from my phone right now.


I am soooo very thankful for everyone that helped us this weekend in the ongoing drama, that is Jake's life and to the many nurses and dr.s that helped us at Cook's. I also praise the Lord that Jake's injuries were as minor as they were. Although, he will be out of gymnastics for a couple weeks, I think he will be just fine!:-)

I can't help but look at the past couple days and how things transpired and not laugh. I grin, chuckle and sometimes even belly laugh thinking about it. Seriously?! who does this kind of stuff actually happen to?

He is so Brave! I am soo proud of him!
And Joshua said unto them, Fear not, nor be dismayed, be strong and of good courage: for thus shall the Lord do to all your enemies against whom ye fight.

Joshua 10:25

sleeping is more dangerous than it sounds

Last night I had just fallen asleep, after hours of tossing and turning, and heard a humongous THUD!!

I have heard it before, so I hesitated, braced myself and then made my way to the side of the bed where the obnoxious noise rose from.

I see Jake's pretty, little, now bloody, head, wedged in between the nightstand and our bed.

His face was already a bloody mess, but I was worried about his head. After much searching, and thorough checking the head had no wounds! I now was able to work on the source of the blood.

It seems , as Jake tumbled off the bed, not only did his teeth make it almost all the way through his lip, but on the way down, I am assuming the nightstand, tore away his top layer of skin from the bottom lip.

It was a very nasty sight, BUT was not caused by a seizure. I have said it before and will say it again, Blood is sooo much easier to handle when it is not stemmed from a seizure!

The boy looks like he has been in the ring with Tyson!



Much to my surprise, because of the salt, the kid was still able to eat almost an entire jar of pickles for dinner, hence the pickle seed on the bridge of his nose.

still catching up- ICE at the Gaylord

A couple weeks before Christmas we took my dad to the Gaylord Texan for his birthday. Every year they have an amazing ICE display. This year it happened to be based on The Grinch, one of Addison and Jake's most favorite movies.

When buying tickets we were warned that the exhibit reaches a blustery temperature of only 9 degrees! Needless to say I wrapped the kids up in as many layers as I thought would fit under the provided, lovely, blue parkas!

Because with extreme changes, we may see more seizures, I was allowed to roll Jake around the exhibit in his stroller for "medical neccesity." Good thing I did, because the child did not like the cold one bit. After participating in some fun that the display had to offer,
he then retreated to the comfort of his limo, the stroller, and only seemed to show signs of life after a much needed cup of hot chocolate. Addi on the other hand could have slept in the Grinch's bed, as she thought it was fabulous and the icy temps never appeared to phase her.

This was truly such an amazing work of art it was breathtaking. I was so excited to be able to share it with the kids. They had a great time and were in awe of the wonder that is ICE.

Last Christmas, this kind of venue would have been my worst nightmare and an anxiety attack waiting to happen, as all the surfaces are rock hard. I can just picture Jake busting his chin or his head, after falling from a seizure.

Although we still have some mountains to climb, in regards to seizure control, Jake is doing a million times better. For this we are blessed.

Blessed be childhood, which brings down something of heaven into the midst of our rough earthliness.
Henri Frederic Amiel

Catch up!

It has been a long time since I have posted and you have missed out on some great events we have been involved in during this Christmas Season.
This is going to be a picture post of our many outings( changed my mind last minute...one outing at a time), so I won't feel so far behind.

Make a Wish gingerbread house making

The weekend before Christmas Make a Wish invited Jake to attend a gingerbread house making event. I never now what exactly to expect when fun things like this come up, but when it comes to MAW, I certainly, almost always underestimate the level of fun, planning and dedication that will be given to these kiddos.

The kids were given chef aprons, breakfast, gingerbread houses, and special appearences were made by some very special figures here in the Dallas area.

Rowdy, the Dallas Cowboy's mascot, calling Tony Romo, Jake's hero!

Addison was made to feel not like "the sister of a wish boy," but rather as an immediate part of the group. We had a great time! It was certainly a great way to get the Holiday season underway!

Jake loved looking at the lobsters maybe even more than he loves to eat them


I think the kids could have possibly eaten more candy than actually went on their masterpieces.




The final products!



They were so proud and had a great time! I am definitely going to make gingerbread house making a tradition in our house for Christmas time. We rae so blessed to have been surrounded by amazing people willing to give up their time for our special kids. Thank you Make a Wish! Thanks for everything.


Make a wish, have a ball, dream a dream, be it all... If you want it, you can get it, But to get it, you've got to want it. Anything you want to try, Just let go, fly high... and Make a Wish. Tom Chapin