Friday, April 30, 2010

Grace Moments

We had some amazing grace moments on our way home from Houston. They were teeny tiny, but I wanted to share them because it was so evident that God was with us and "giving us a break."

We were discharged from the hospital at 10:00 a.m. yesterday. Renzi worked frantically to get us on the 12:00 Southwest flight home and did it. We rushed back to the hotel to pack up our things. I was in desperate need of a toothbrush and a shower. Renzi said I had 17 minutes to do these things. I did it! (grace moment number 1. hahahahahha). We rushed to get in the cab and were on our way to Houston Hobby Airport. We pulled into the airport at 11:02 a.m. There was no line for the sky cap but we didn't have any cash to tip the skycaps, so Renzi told me to take the stroller and Isaiah inside to get in line while he paid the cabby. I got inside and got in the longest line I have ever seen waiting to get our boarding passes. Renzi comes inside and gets in line with us. Out of nowhere a man from Southwest picks me out of the crowd (by now we are smack dab in the middle of all of the people) and says to me, "Miss, follow me, I am about to open up another line." We followed him and we were first in his line and got our boarding passes in record time. (grace moment number 2)

We then proceeded to the security line...which was even longer than the Southwest Check in line! I was a little behind Renzi and I was following him when all of a sudden this woman is yelling, "Miss? Miss? Hey you with the stroller and the adorable baby boy! Come get in this line!" I follow her and we are led to the Employee Screening line where there is NO ONE IN LINE. We go through security in record time. (grace moment number 3)

Remember when I said we got to the airport at 11:02 a.m? Now, the time is 11:12 a.m. That, my peeps, is a blessing!!! :)

But, it gets better....

We get on the plane, the plane is not full so we have the whole row! (grace moment number 4) The plane takes off and Isaiah immediatley falls asleep in the middle seat. (grace moment number 5) Renzi and I hear the sounds of other babies on the flight crying and can't believe our baby is NOT one of them. Ren then reaches into his bag to get a pen and finds two drink tickets!!! We toasted to our good fortune and to Isaiah. (grace moment number 6)

We land. Jokingly, I mention that if our bags are the first off the plane it would really top this off. Our bags were first off the plane and on the conveyer belt. (grace moment number 7!)

We get home and we get to see Jackson!!! He looked like he had grown so much and we missed him so!!! We had a fabulous evening of cooking dinner and loving on our boys and watching them play together. Clearly, they had missed eachother dearly and that warmed my heart like no other. (grace moment number 8)

Know what else warms my heart? The fact that it is now 8:33 a.m. and Isaiah has been asleep for 12.5 hours. And didn't wake up ONCE last night. We all slept amazingly and it was much needed after our week. (grace moment numbers 9, 10, 11, infinity)

I write all of this to say....even when you are down about something that didn't go your way, look for the little grace moments that God puts in your path to show you that you WILL get through the dark moments...and that he is always there for you.

SOOOOO HAPPY TO BE HOME!!!!
Much love,
Lee Anne

Wednesday, April 28, 2010

Isaiah's Next Phase

We arrived at the epilepsy monitoring unit (EMU) here at Texas Children's Hospital on Monday evening. Dr. Wilfong, Isaiah's doctor, took him off of all meds beginning Monday morning. As with all epileptics, you can expect a seizure within five days of no medicine. Isaiah was ahead of the curve and had a seizure on Tuesday afternoon for about five minutes and then again this morning for twelve minutes. He needed two doses of the drug Adavan today to stop the seizure. Long seizures are one of the most frustrating and scary parts about Isaiah's condition.

This afternoon, Dr. Wilfong came in to our room with his evaluation. On a positive note, Isaiah's seizures seem to still be coming from the front tempural lobe of his brain - a confirmation on from our January diagnosis. Unfortunately, they are not able to see the abnormality on the 3T MRI, which we hoped they would be able to see. Dr. Wilfong said it is a blessing and curse. The blessing is you cannot see it because it is so small. The curse is that because it is small, Isaiah is not a candidate for surgery at this time. He could be a candidate in the future.

In our search for good news, Dr. Wilfong does still think Isaiah has a great outlook for three reasons.

1. First and foremost, he is developing normally.
2. He is still young and by the time he turns two and his brain is more developed, we may see the abnormality more clearly which would allow us to progress down the surgery route. Or, he might "out grow" or minimize the epilepsy over time thus not requiring surgery at all.
3. Even though we are not a strong candidate for surgery now, that could change and there are other tests that we will run in the future (PET, MEG, SPECT) if he continues to have issues.

We met a young girl's parents down the hall who is having the surgery on Friday. Dr. Wilfong said her epilepsy is similar to Isaiah's condition. He is extremely hopeful for her procedure and believes it could remove the epilepsy all together.

Dr. Wilfong is very matter of fact and presents his findings that way. We are feeling OK about the news. Of course, we just want to fix it, but if that is an option it will be off into the future. We'll ask for faith to guide our path.

Renzi and Lee Anne

Tuesday, April 27, 2010

Learning to Fly






"Well some say life will beat you down. Break your heart, steal your crown. So I’ve started out, for God knows where. I guess I’ll know when I get there…I’m learning to fly but I ain’t got wings. Coming down, is the hardest thing". – Tom Petty


I believe in God given abilities and one of mine has always been telling a story in a way that others can relate. For years, I wished it was a jump shot and maybe an extra inch or two on my vertical. Storytelling, however, is a gift that has served me well. In a simple kind of way, I’ve built an entire professional career based on this thing I do well. The story I’m about to share is extremely hard for me to write about.


I’ve been reluctant to share Isaiah’s story and my personal struggle with his epilepsy.


Strangely, I haven’t had a whole lot to say about Isaiah and his epilepsy. I’m hopeful today for his future and have been since the beginning. I do truly believe we are blessed and I carry some guilt when praying so fervently for Isaiah since there are children who will never have the chance to live a normal life. Isaiah will be fine.


Right?



Friends, family and colleagues ask often about how he is doing and what they can do. I have good talking points about his situation and share them on a moment’s notice.


There is nothing you can do except pray for Isaiah and us.


This is my standard, go-to line, and I probably deliver it convincingly well. I really do believe prayer is the most important act any of us can do for the innocent or someone who questions the direction that life has taken. My faith remains strong and my plea to God is urgent, but I’ve struggled to understand two questions.


Why me? An incredibly selfish question.


Why him? The real question I want an answer to.


For even those who are closest, I struggle to explain in any additional detail. I am a plus, minus type of guy and so I’ve tried to add up the pluses against a towering list of minuses. I’m an optimist, but the minuses are mentioned in prayer to build a case to God that he has given Isaiah and us enough. Surely a struggling parent, business in its prime, life’s little annoying, yet necessary details and an ambition to do it all is enough for one guy. Since God doesn’t operate that way and because I’m too stubborn to accept that, I keep petitioning for this nightmare to end.


Did I just describe it as a nightmare? When will I learn? When will we all learn that God doesn’t operate like we do?



Outside of talking to God on a much more regular basis, the most inspiring plus to come out of this is my relationship with Lee Anne. I’ve marveled at her ability to write in a matter-of-fact way about Isaiah and us. It is fresh because she does it with a twist of sincere authenticity, self-deprecation and knee slapping humor. Believe me, we’ve both cried our fair share of tears, but you would never know it by reading her blog posts.



One day several months ago, I told her that she was inspiring others to deal with their tough situations – a sentiment shared with me countless times outside of her presence. She looked at me and said, I’m writing for me and if it inspires someone else, then great.


Didn’t I feel small? It was then that I understood my wife in a way that I’d never known her before. Don’t let the gorgeous exterior trick you. She is far more beautiful, strong, thoughtful, and faithful inside than you would ever know by looking at her. She has been my rock, but would laugh if I said that to her out loud.


Back to why me? My best attempt at understanding this raw human reaction to pain is that I’m being taught a valuable lesson. Part of the wonder of God is that Isaiah’s condition is not reflective on me, Lee Anne or our sins.


I recently read John 9: 2: His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”


I’ve come to understand that my reaction to Isaiah’s situation is a normal one. What did I do to deserve this for my son?


But it gets better and God gives incredible comfort and an answer to my second question, why Isaiah?



John 9:3 - “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.”


The moral to this story is that I believe Isaiah is going to make a full recovery and will remember none of this, his only scar the touch of the healing hand of a God whose mercy is on display for anyone who wants to see it. Lee Anne and I will eventually celebrate our misadventure, a journey that has welded our bond together even closer. I will continue to learn, pray for patience and resolve to share our story to inspire others. I’m still learning to fly, but I ain’t got wings. Coming down is the hardest thing.

Monday, April 26, 2010

Wrapping up Monday....

Whew...What a long day!!!

We just finally put Isaiah down to sleep for the night....he didn't sleep at all after the anesthesia. Who in the world doesn't sleep after anesthesia. Apparently my son. :)

It took about 2 hours to get him fully hooked up to the EMU and he finally got to eat...after going 24 hours without food, he finally ate. He finished off five chicken nuggets, mashed potatoes and gravy, green beans, 2 whole pieces of bread, a sippy cup of water and a fig newton. He finished off the night with 10 oz. of formula. My poor starving child.

After he ate, the EEG tech that is on duty tonight (remember, our room is monitored 24 hours a day with three video cameras and microphones), came into our room and did a photosynthesis strobe light deal to try to induce a seizure. No such luck...Isaiah just laughed. She said she would try again tomorrow. (On a side note...have any of you ever noticed on some video games it has a warning that if you are prone to seizures not to play a certain game? It's because of the strobe light/photosynthesis effect. Apparently that can induce seizures!)

Dr. Willfong will be by in the morning sometime and we are hoping he will be able to tell us what the 3T MRI said. Isaiah is officially "drug free" today and hasn't taken any of his seizure meds since yesterday evening.

Renzi was the baby whisperer tonight and got Isaiah to go to sleep and I just sent Renzi to the hotel so he could get a good night's sleep tonight. I just made my bed on the couch and am hoping for a good night with my little man.

Much love!
Lee Anne
P.S. I am missing Jackson tonight so much!!! He is staying with my grandparents in Clinton this week and is having the time of his life. I am so happy that he is able to spend such quality time with his great grandparents. My grandma said he has been eating like a champ. Of course he is Grandma, you are the best cook in the world! :)

We're Baaackkkkk.......

We made it to Houston this morning at 8:00 and checked into the hotel around 9:15....then we headed over to Children's Memorial Hospital to get to Isaiah's MRI.....

It's now 2:39 p.m. and Isaiah has only been back in the MRI room for 39 minutes.

I digress.....

We were admitted into day surgery as soon as we got here and were ushered back very quickly into the day surgery play area...where we waited for the next 3.5 hours! And we waited with Isaiah who had not eaten since 8:30 p.m. last night and who had not slept since we woke up him up at 5:30 a.m. to go to the airport!!!! Isaiah was such a trooper though, and was actually pretty pleasant until right up until we were getting him set up with the anesthesiologist when he got pretty cranky. (Oh and on that note, since Isaiah is so strong, somehow he popped the anesthesiologist in the face and she turned the gas towards my face and I took a HUGE whiff of the gas....needless to say, I was super sleepy for a little bit! This stuff, seriously, only happens to me. Those of you who know me well can attest to this.)

We got him under and now we are just waiting for them to send us back to the recovery room to see him. As soon as they release us from here we will walk across the street to Texas Children's and be admitted into the EMU and get him all hooked up there for the next few days. The MRI tech is going to give us a CD of his images that we can take to Dr. Willfong tonight.

That's all for now...we will post again soon!
Much love to all of you!
Lee Anne


Friday, April 16, 2010

Final Plans are Set for TX Children's!

We have FINALLY gotten everything set up for our trip back to Texas Childrens Hospital for the week of April 26th for Isaiah's Surgical Evaluation. MAJOR PROPS to Renzi for getting all of this set up and times coordinated, plane tickets purchased and general taking care of things for us. :)

We are flying to Houston, Monday, April 26th at 7 a.m. and Isaiah will have his 3T MRI at Herman Memorial Hosptial in Houston at 11 a.m. Immediatley following getting him out of the recovery room we will then check into the Epilepsy Monitoring Unit again at Texas Children's Hospital for the week. Our doctor will again be Dr. Angus Willfong and I spoke with his office yesterday and they are devising a plan for us to start weaning Isaiah off of his meds before we get to Houston. This will help prompt a seizure from him sooner in the week while he is hooked up to everything in the EMU.

We are ready to get this whole process moving and are ready for whatever the surgeons have to say about Isaiah's case. Of course, we will be blogging daily while we are in Houston...what else will we be doing while we are all confined to a room and our very mobile 10 month old is hooked up to electrodes on his head and can't really get around like he wants to??? It's going to be LOVELY. :) ha ha! Seriously, though, we are grateful for the opportunity to see if Isaiah is a good candidate for brain surgery and are completley confident in the doctors and the Lord!

In other news.....

Isaiah is officially waving hello and goodbye and he says "Hi," "Momma," "Dada," and he LOVES to dance. What's funny is that there are 2 songs that he immediatley starts dancing to..."Single Ladies," and "I Gotta Feelin." So funny! He is also cruising and trying to stand up without holding on to anything....lots of bumps and bruises, but man he is so strong! He also has decided that he does NOT want to eat baby food and wants to eat everything that Jackson eats. So, the other night he had 3 pieces of pizza. Not even kidding.

Jackson is an American Idol fanatic! He has a cheoreographed dance to the opening song on American Idol and knows all of the judges and knows that the host is Ryan Seacrest. His favorite contestant is "Asey Ames," and he keeps asking me where Alex went....We found out recently that Jackson got into Westminister Montessori School for the 3 day program next year and we are so excited for him to go. He is counting to 10 all on his own and he is singing songs all of the time. Of course, I am a momma and am biased, but that kid is so flipping smart. Must take after his mom. :)

Renzi just opened an office in Tulsa and has been traveling to Tulsa 2-3 times a week. The office is in the Brady District of Tulsa and it is really cool. I am so proud of him for opening his official 3rd Saxum Public Relations office! He has also been swimming two mornings a week with a swim coach and is preparing to participate in a Masters swim meet sometime in the near future. For those of you who don't know, Renzi still holds some of the records in Oklahoma in swimming from when he was a kid. He is an amazing swimmer.

I ran my first 10K last Sunday! I have been running since November since I ran the 5K turkey trot with Ginny and Dave, and somehow got the running bug. I finished the 10K in 1 hour 9 minutes officially! And it was HOT outside. No wind. When in Oklahoma is there ever no wind? Well, last Sunday was the day for no breeze of any kind.
I am running with some fun girlfriends in the OKC Memorial Marathon Relay April 25, so I will be running another 10K then. I am excited!

We love all of you and thank you for your continued prayers for our family. We are truely blessed by each one of you who reads this blog.
Cheers,
Lee Anne

Thursday, April 15, 2010

Praise You in This Storm

I am LOVING this song right now. Download it now! I have been listening to it in the mornings on my runs and it is so uplifting and fitting right now in our lives.


Praise You in This Storm
words by Mark Hall/music by Mark Hall and Bernie Herms

I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

Chorus:
And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away

Chorus

I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth

Monday, April 12, 2010

Not your typical poop story.

Renzi just picked up the boys from Mothers Day Out today and just called me at work to tell me this story....Apparently, Isaiah had such a massive poop this morning that his TEACHER had to go home and change her clothes.

Way to go Zayah. Way to make your momma proud. EEEEEKKKKKK AND EWWWWWW!

Sunday, April 4, 2010

Rejoice! He is Risen!





What a fabulously glorious day! Thank you Jesus!

Here are a few pics from our magical Easter day. We had such a great day spent with family and friends.

Also, for your enjoyment...here is an updated video of Jackson dancing to "Single Ladies." And yes, we taught Isaiah how to dance to it too. Enjoy! He is risen! REJOICE!

video

Friday, April 2, 2010

Surgical Evaluation

Renzi spoke with Texas Childrens Hospital this week and we are set to head back up there for the week of April 26th. We will check back into the Epilepsy Monitoring Unit (EMU) for 5 days, exactly like we did back in January. They recommend that we go through the EMU again for a sort of surgical evaluation. We also are in the process of scheduling the 3 T MRI for before we go to Houston. We are having a bit of a problem getting this set up because the only place in Oklahoma that does full anethesia is OU Childrens Hospital and they only have the 1.5 MRI and we need the 3. We could possibly go to Tulsa to get the 3T done, but they only do sedation and our doctor's concern is that Isaiah will not be still enough with just sedation alone (based on the fact that under sedation and a tube in his throat the strong boy SAT up and tried to take the tube out of his mouth!). Our other option to get the 3T done before we get to Houston is to do it in Ft. Worth, which we might do. Dr. Norman's office is working with us to try to figure out the best option. *We could do the 3T in Houston, but apparently they can't do it until Tuesday or Wednesday of the week we are there and we would have to take all of the EMU equipment off of Isaiah and then put back on, which is quite a grueling process.

So, after the 2nd week of the EMU Isaiah's case will then be put to a surgical panel of 35 doctors. This panel includes neuroradiologists, epileptologists, other child neurologists, neurosychologists and neurosurgeons. This panel will decide whether Isaiah is a candidate for surgery.
After their evaluation if they decide Isaiah is a candidate we will then schedule his surgery, which will likely be at a later date so we will more than likely make another trip to Houston for the surgery.

We are feeling good about the options and are set to do whatever we need to do. Isaiah has been having a fabulous week and is sleeping like a champ. We have no idea why he is sleeping so well, but we are not going to try to figure out why. It's amazing what 5 days in a row of 8 hours of sleep a night can do for a person! :)

We have a fun weekend planned with lots of Easter activities. We are decorating eggs at the Hesketts tonight and have a full day of eating and Easter egg hunting, along with church on Sunday. Renzi, our friends the Peters and I are all doing a fast starting today until Sunday morning. We are doing it to be more aware of this time of Easter. We are also using it as a reminder to pray throughout the day, so whenever I feel hungry it will remind me to pray. We are able to drink veggie juice, smoothies, etc. so we should be able to make it 48 hours. Now that I am writing about not eating, I am suddenly starving. And I just woke up an hour ago. EEK!

Happy Easter all!

P.S. Here's a funny from Jackson. "Mom, I need TMILK (translation Chocolate milk) because I neeeeeed a party in my tummy."