One backpack

It's late and I am obviously not going to sleep anytime soon this evening.  I would say that both Chad and I have struggled sleeping this summer and as Mitchell's surgery date is now less than two months away and school is just around the corner it creeps into our minds even more.

Today Mitchell and I took some time before picking Collin up from preschool to get all of his school supplies.   I wasn't thrilled with his choice of a Mario back pack but he was so excited to get it home and put all his supplies in it so he is ready for his first day of school on August 24th.  And then I had a moment of panic when several thoughts came to me all at once.  Here was just some of my many racing thoughts....

How in the world are we going to get a little boy who lives in t-shirts and mesh shorts/pants to actually wear button up shirts only?  After surgery he won't be able to pull anything over his head clothing wise for quite some time.

What will we do to keep him happy and comfortable when he is out of PICU and back in a hospital room?  When he had this surgery at 9 months old his eyes were completely swollen shut for at least 1 to 2 days.

How are we going to keep his brother from climbing all over him when we get home?

While we have talked quite a bit with Mitchell about his upcoming surgery and we are always ready to answer questions as best we can when he asks....it has been easier for me to just put this aside and try not to have it be the center of my focus during the days.  But at night it is hard not to be, well just sad, scared, worried and heartbroken.

 For some reason when I get like this I keep coming back to a moment we had with one pediatric NICU doctor with Collin when he had his own problems as a newborn in 2008.  This man had little to NO bedside manner.. At the time the thoughts that went through my head after he turned and said this to me were less than positive (and if you know me you know exactly what that means.)  As we talked about how/why Collin happened to be the 1 in some big-number-odds of having this rare hemolytic jaundice he just stopped, looked at me and said: "No one ever promises anyone in life a healthy baby.  But everyone just seems to expect one.  Be thankful we can help your baby."

Okay, so maybe not what I needed to hear right at that very second!  But it has stuck with me none the less.  I am so thankful for so many things and I have to be thankful even in this situation with Mitchell.  I am thankful this was caught before he started having problems.  I am thankful there are amazing specialist that can work magic by reshaping his forehead and orbital bones so his brain has room to grow.  And I am thankful each day that God made me the mother of this most amazing young man.

Chad's Olympic Distance Triathlon

1500 meter swim, 40K bike and 10K run....what an amazing feat! 

Chad's 4th triathlon was also his longest to date and he did great finishing in 3:06:15.  Thankfully the hot, sunny weather did not hit until the end of the race and I was so proud to see him accomplish this goal.  The course was extremely challenging and Chad finished 19th in his age group.

Before the triathlon began at 6 a.m. at Lake Cunningham

Chad coming in after the 40K bike

Chad in the white hat coming out of transition for the 10K run

At the finish line holding up "wildcats" with both hands as always!

Chad and I Thursday night just before the Zac Brown Band concert in Omaha

We had a wonderful extended weekend visiting friends and even getting to see Chad's cousins in York while picking up the van.  Even though we have returned to the 100+ heat in Kansas, we are both glad to be back home with the boys.  Only one more week of summer vacation before I return to work....where has the summer went???

It's hard to run...

When you've been sick for a week!  I've hardly eaten in a solid week and to say I am stir crazy and ready to be well again would be an understatement.  We have plans to see the Zac Brown Band tomorrow night with the Croghan's and Mader's in Omaha and I am still hopeful we will be there.  But the real test will be eating real food.....which hasn't happened successfully in a week!

Mitchell and the fort he constructed out of our dining room chairs while I was mopping in the kitchen.  The boys had a lot of fun with it.....if only it hadn't been in the middle of our living room, it could have lasted longer! :)

We have all Mitchell's pre-op appointments scheduled now (thankfully all three in one day which means only one extra trip before surgery to KC).  His surgery is set for Monday, September 19th....either the scheduling nurse told originally me wrong or I heard September 20th instead of the 19th but we are on the same page now.  We plan to meet with his teacher and other staff at his elementary school in August to plan for the month he will miss from his 1st grade year.

Hoping for good weather and perhaps some slightly cooler temperatures for Chad this Sunday morning as he competes in his next triathlon in Omaha!!!

Grand Island

Shana and I at her wedding reception in Grand Island, NE

You can almost set your watch by it at our house.  Have plans made several months in advance for a fun weekend and we are basically just putting a welcome mat out for some crazy virus on steroids to invade our home.  I guess we could also include holidays like Christmas in there as well if you were counting....but everyone gets the idea!

I am glad we were able to finally make it Shana and Josh Brigg's beautiful wedding reception in Grand Island this past Saturday.  But it seems like our trip was doomed from the get go.  Sure some of this was self inflicted....after my turn with the amazingly awful stomach flu, I thought I had recovered Saturday and we took out for GI.  I think I would have probably been just fine too, but I just had to have Godfather's pizza for lunch....even though I hadn't really eaten anything for 2 days.  In hind sight, this was not my wisest decision in life as I paid for that 1 slice of pizza and Dr. Pepper dearly for the rest of the day and evening.

Laura, myself and Shana during the reception/dance

And because it just can't be fun enough in 100+ degree heat, we had another wonderful surprise as we were all loaded in the van, dressed in our best and ready to head to the wedding reception for a good time with lots of friends.Our van decided that this would be the day it would no longer shift out of park and also lock up and not allow the key to turn off completely once it had been turned on.  Thankfully this all happened outside of Zach and Laura's house so we could quickly get the kids inside.  However we were about 2 hours late to the wedding reception once we finally arrived.  I was feeling better for most of the evening, but by the end of the night my stomach was killing me again and I had to call it an early night.

After a long Sunday of having the van towed, picking up the kids at Chad's folks in Hildreth and once again not eating all day (wasn't hungry and didn't trust my stomach after the day before).  We are exhausted and I wish the weekend could have turned out differently for us.  However we are thankful for Chad's folks to who took the boys home so we could have some time with friends we don't get to see often and for my folks who helped us tremendously with the van drama.  Not only did they help us get the towing figured out, they rode with the van in the tow truck to York and then drove our loaner car back to Manhattan!  We are also thankful to have Chad's cousins Ben and Carol Kohl who are always amazing helping us find vehicles and coming to our aide with a loner car while they look at our doomed van.  I'm pretty sure at one point yesterday evening Chad was ready to push it down North Webb Road and into a railroad intersection!  But of course it wouldn't shift out of park so that was impossible. :)

These experiences are what memories are made from.....good or bad.  We are still glad we were able to celebrate with Josh and Shana and wish them the best!  This week we will have a trip back to NE for the van of course and also to see the Zac Brown Band in Omaha while Chad will also compete in his 4th triathlon also in Omaha on Sunday.  We know he will do amazing!!!

Splish Splash

Another great summer for the pool!   Both boys love the water and as you can see from the video below...Mitchell continues to be very adventurous.  He can now also do front flips off the diving board at Cico Pool and is proud to be in level 5 for swimming lessons. He is determined to pass out by the end of this week so we can start the next session on level 6. And we keep assuring him that swim lessons are about being a strong swimmer and not about how high of a level you are on. I have no idea where he gets his competitive spirit from.....

Swimming at our neighbors pool during the 4th of July weekend

Collin is also in the preschool swimming lessons with me and is making great progress! He can now go under water, blow bubbles underwater, bobs up to 5 times and float on his back. He is also doing good on his scoop and kick actions and just loves going each morning to the pool. His one hill to climb is jumping off the side of the pool to me by himself. Here are some of his comments/reasons why he didn't need to do this during our lesson today:

Collin: But I just did jump!
Me: But we need to practice it again.
Collin: I already did practice, let's go get a noodle.

Collin: Mommy, come CLOSER to me!!!
and
Collin: Mommy, I just need your fingers for a second!
Me: You can do it without my fingers.  I will catch you.
Collin:  Just one finger Mommy, I need it!
and
Collin: I need to hug your shoulders Mommy!

Bouncing Back

Last week was a total whirlwind and to be honest and I am still wrapping my brain around what is in store for Mitchell this coming fall. But we have had some great family time and another 10K race that Chad and I completed on July 4th.

We had a great time this week with Aunt Amy and cousin Daniel who came down from Minnesota for the week!

We had so much fun with Daniel swimming, playing, watching fireworks and even went bowling one afternoon.

We ended our week visit taking in Mitchell's t-ball game.  It was a great visit and I know both boys will miss Daniel and Aunt Amy tomorrow when the return home.

Chad and I were able to run in the Junction City Freedom 10K Race on the morning of July 4th.  Neither of us had done hardly any running at all with the craziness of the week before with Mitchell.  With the humidity and lack of preparation, I was just hoping to finish the race.  Chad did awesome and had a PR with a time of 54:41!!!  I also had my second fastest 10K time and also had my second 10K running under one hour finishing just over 59 minutes.  It was hard run for both of us and again with the summer conditions and little to no running time beforehand I think we both did a great job.

Chad and I will no longer be able to run the October 15th 1/2 Marathon in KC due to Mitchell's surgery/recovery.  We may look at running another 1/2 marathon in November, but time will tell.

Another unexpected surprise to the week was this last picture!  This storm went past us Tuesday night, but the wind gusts coming off it took down two huge limbs in our backyard.  Thank goodness they fell in the perfect spot......missing our play area, the porch and most importantly, the house!

A long week

I apologize for not posting a blog sooner....honestly I have just not felt like it until today.

Most of you already know of our long and unexpected week with Mitchell. However, I have also had so many people e-mail, text, call or facebook me about what happened with Mitchell that I thought it would just be easier to blog about it.

After our great family weekend in KC, Chad and I returned with Mitchell to Children's Mercy in KC on Monday for Mitchell's spinal tap.  This was to determine if his intracranial pressure was in fact high as his CAT scan had indicated two weeks before.  We were nervous about the procedure and ready for it to be over for Mitchell.  Dr. Revard, who was performing the lumbar puncture assured us that Mitchell would be comfortable and wouldn't remember a thing about the procedure.  He also informed us that he would know what the pressure was and tell us the news right after the spinal tap was finished and Mitchell was in recovery.

Mitchell proud of the poster he made for his 1st Cubs game

About 30 minutes of waiting later we learned that the procedure went well and the doctor told us Mitchell did great. However we also learned the devastating news that he did in fact have high intracranial pressure (normal is 12-20) and Mitchell's was 39. Many tears were shed by both Chad and I as we knew this meant that the next step would be more craniofacial surgery for Mitchell in the very near future.

Mitchell seemed to recover fine initially from the spinal tap and only complained about his back hurting a bit.  But after we returned home Monday afternoon, his back pain became worse.  By bedtime he was in agony and we were on the phone with nurse's from Children's Mercy and finally Dr. Revard who instructed us to take Mitchell to the ER for pain management before we went to see our pediatrician the next morning.  After 3 long hours in the Manhattan ER, Mitchell was finally comfortable enough to sleep and we returned home.  We were certain that Tuesday would HAVE to be a better day......we were wrong.

Tuesday morning started off with Mitchell acting much better, but by the time we were headed to our follow-up appointment with Dr. Rose from our ER visit the night before, Mitchell was in so much pain again he could hardly walk.  Our amazing pediatrician was on the phone with Children's Mercy about Mitchell's situation, evaluated him and was hopeful Mitchell was just having acute back spasms from the spinal tap the day before.  He instructed us to call him in the afternoon and to be sure to call before that if Mitchell's condition worsened.  Again we were hopeful Mitchell was on the mend....but by mid afternoon the back pain had worsened into a horrible headache and nausea.  Dr. Rose had us go right away to Mercy Hospital in Manhattan for an MRI.....after more waiting from that procedure Dr. Rose informed us that Mitchell was leaking spinal fluid from the procedure the day before and told us to go directly back to Children's Mercy as a direct admission so they could monitor the severity of his situation.

It was a panicked and long drive back to KC. My parents had been amazing taking over with Collin so we could drop everything with Mitchell and go. Mitchell got worse on the van ride to KC, vomiting, falling asleep and basically scaring the crap out of us. After being admitted and finally getting his pain under control things seemed to finally stabilize for our little guy about 10 p.m. Tuesday night. All of this happened in less than 48 hours.

The first day at Children's Mercy we were just resting and allowing the IV fluids to do the trick....thank goodness for the Wii!

Thankfully the incredible staff of Children's Mercy was able to work with Mitchell and help alleviate his condition without needing a blood patch. We spent two nights in the hospital with Mitchell having IV fluid treatment, rest, and a caffeine bolus. We were sent home yesterday and are still pushing the fluids, having him lay down when his head hurts and monitoring him from home now. Grandma and Grandpa even let us borrow their Wii for the day! :)  The care we have gotten from the doctors (especially Dr. Revard who went above and beyond for us) and nursing staff was absolutely amazing.

During our latest hospital stay, Dr. Singal (Mitchell's pediatric plastic surgeon) also came by and confirmed the need for Mitchell to have a second Frontal Orbital Advancement within the next 3 months.  He also believes that Mitchell had these complications from the spinal tap because of Mitchell's high ICP.  Before leaving the hospital yesterday, we learned that his surgery date is September 20th.  This procedure is extremely invasive as they will again be reconstructing his forehead and orbital bones to allow for the proper room needed for his brain to continue to allow him to be a healthy happy young man.  He will be in the hospital from 3-5 days and then will be out of school for 3-4 weeks recovering.

It is so hard to think about putting him through this ordeal again.  He was 9 months old the first time around when he had this same exact surgery and has no memory of the swelling, bruising, limitations and pain he went through.  Now at 7 years old....this will be a whole new ball game.  He will look very different for quite awhile as his head heals and the swelling very slowly goes away.  To keep an active boy down and tell him he cannot do the things he loves like PE, playing on the playground, sports, swimming lessons and who knows what else is a thought that I am really struggling with.  Seeing him in the pain that he was in this past week and knowing there was nothing I could do to take it away even as he wanted me to so badly was something I know we will go through again in just 3 short months.  I know all of these limitations are short term only, he is a wonderful young man with no issues and this surgery will ensure that he continues down this same path....I know things could be much worse.  But I still have my moments.  I thank GOD every day for both of my amazing son's and I know that he will see us through this. 

Thank you all for you continued thoughts and prayers!  And keep them coming as Mitchell's unexpected journey continues.  He is a strong little guy, but this will be a lot for him to deal with physically and emotionally.