Monday, July 30, 2012

Even Superman Gets Sick

(posting tonight from my phone)

For the third night in a row, Erik and I took turns rocking a sick baby while in between cleaning up vomit sheets. Fun times!

I took Jack to see the doctor first thing this morning and as I feared he had a double ear infection and a horrible looking throat. Once I got him back home and settled with Hogan it was off to Memphis for a few errands and OT and PT at Lebonheur. We even had a fun lunch at Pei Wei (our favorite lunch spot) with Amanda, Gracen and Hyatt to kick off the start of school. Yep, our kids start back August 6th!

Lucy and I didn't get home until after 6pm and by then Jack was defiantly a little worse for wear. Poor baby. He did manage to muster up the energy to do "Superman" like the girls though. I think it was a but much, as I ended up giving him his first breathing treatment soon after.

Tomorrow is another full day. It's back to Memphis for me and Lucy, Ella has a dentist appointment and tumbling and Jack is ready for a day of momma lovin. Here's to a good nights sleep.




Sunday, July 29, 2012

Anatomy of a Family Picture




This is what happens when I try to make a picture play out in real life like it does my mind.  Utter failure.  To be fair, it was late and the kids had already posed for a million pictures.  This, however, was the picture I really wanted.  The outfits were perfectly planned and the canvas was already made (in my mind.)  Oh, well. Better luck next time.  

We did manage to get some great family shots, but not without a few funny ones that make us laugh.  This one was the funniest by far.  It is seriously the worst picture ever of myself and my sister in law is probably going to kill me for posting this!


In the end, there were some frame worthy pictures to be proud of.  I have bought a couple of Groupon deals for Canvas on Demand and I have been so pleased.  I think some special grandparents might be getting pictures for Christmas this year.  








Then, there are always the ones that just happen.  The best pictures are rarely ever planned:






For those that asked, we stayed at the Edgewater Beach Resort in Panama City Beach, Florida.  The beach trip was wonderful.  Is it time to go back?

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Saturday, July 28, 2012

Go Team USA

This wasn't the post I had in mind for tonight. However, when we got home from the mountains I discovered that my computer screen is on the blink. Once upon a time this would have been enough to put me over the edge, but thankfully this new perspective on life has me staying pretty calm. I will admit that there is a tiny storm of the crazies brewing as I think about all the pictures (Atlanta, beach, mountains) that are still on my hard drive. Praying it's just my screen and not the hard drive that's messed up.

So...since I wont be working on pictures tonight I guess I will sit with my family and watch the Olympics. I love the summer Olympics and can't wait to share in the excitement with the girls. Four years ago I neary had a heart attack every time Michael Phelps swam. I honestly should have been on the podium with him as much work as I put in. Well, maybe not but I was his biggest fan!

Ella was just watching beach volleyball and I heard her ask her daddy, "Doesn't sand get in their bikini?!". That girl cracks me up.

I hope to resume posting pictures and writing about our beach and mountain trips tomorrow. Until then, Go Team USA!


Friday, July 27, 2012

Playing Catch Up

I know we are in the mountains, but I can't post those pictures until I finish posting about the beach.  Blame it on OCD, but I just can't handle my book being out of order this year.  I've got some major catching up to do and so little time.  This post will mainly be pictures, but I took some great ones and want to remember our wonderful vacation. Installment 1:

During our family photo time, Jack decided he had other things he'd rather do:

And Ella.  Wow!  I think she gets more beautiful every day.  I am so proud of these pictures.


This was our view from the balcony.  I am not afraid of heights, but I am a self diagnosed sufferer of High Place Phenomenon.  It's crazy, I know, but it creates this amazing anxiety that takes over my body.  It's awful.  That means that I don't go out on the balcony for the first few days of any trip and I have to go inside when any of my children are out there.  Totally irrational, I know.  After the fear subsides in a day or two, I always enjoy reading a good book looking out over and listening to the ocean.  This particular day I was waiting on Jack to wake up from his nap and reading something very insightful like US Weekly or People I'm sure.


My absolute favorite pictures are below.  Every single day we were at the beach we saw rainbows.  This particular day we saw double rainbows.  We liked to think that God was sending us a sign that everything was going to be ok.  Our hearts and minds were heavy this vacation and each day when we saw the rainbows we seemed to breathe a sigh of relief.

More to come....

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Hiking up to Clingmans Dome. We are having a wonderful trip. Too bad it's coming to an end tomorrow.

Thursday, July 26, 2012

Perfection

God's creation has never been more perfected than in the mountains. We are here, visiting Erik's family. This quick get away is proving to be therapy for the soul.

Tuesday, July 24, 2012

Old Tricks for an Old Dog

I know the saying is never try to teach an old dog new tricks.  In our life it seems to be more teaching old dogs old tricks.  Like, learning how to live again with all the same challenges as before but this time they are about ten fold.  Just ask the people who sat near us at the Mexican restaurant tonight.  I'm sure they thought we had never taken kids out in public before.  Jack wasn't so bad tonight, but Lucy was a different story.  Please, if you see us out, please understand that Lucy is experiencing some social anxiety issues right now and this is all very new to us.  We really don't know exactly what to do or what to say to her.  We are meeting with a child psychologist next week and I am really excited about.  I think it will be good for all of us.

Anyway....learning to adjust to our new normal seems to be an everyday challenge.  I'll take it though.  It sure beats the alternative.  I'm sure there is an art or a science that we will create for our family.  For instance, when Mommy wants to go to dinner for a girls night out we just have to start the bedtime routine about an hour early.  Since Lucy can't be left alone for any period of time, its imperative that all baths and bedtime activities are complete before one person is left alone with all three kiddos.  No big deal, unless girls night out starts 30 minutes before bedtime even begins.  Oh, well.  Being 45 minutes late is no big deal.  Right?


We've been busy since we came home at the end of last week.  Visiting friends, visiting family and trying to remember what normal life is like.  Last night we ate dinner with our friends Cissy and Cliff and their precious children.  We had so much fun and the kids played well together.  Well, everyone except Lucy.  But that's a work in process I hope.  Tonight, as I mentioned, we ate dinner with Leigh and Chad and celebrated Benjamin's 7th birthday.  It was fun, even amidst the personal chaos.

Eating chocolate cake with Maddie

Birthday boy Benjamin, Lucy and Leigh

I might not be able to learn old tricks again, but this little one sure seems eager...


I love this little boy.  He makes my heart smile.  He has been amazing since we've been home.  He has changed a lot over the past 6 weeks.  He's calmed down a lot, he listens, he plays by himself.  God really knew that I needed a break.  And Ella hasn't disappeared.  She's just on vacation with her cousins this week.  I can't wait to get her back home.  I miss her like crazy and Lucy has been very lonely.  Jack misses her too. He walks around the house yelling "YaYa" all day long.  We will be together soon and I can't wait!

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Sunday, July 22, 2012

Life as Usual?

"We're not doubting that God will do the best for us, we're wondering how painful the best will turn out to be." -CS Lewis




Things around the Krull house are good.  Really good.  Lucy is still recovering from surgery and seems to struggle with stamina at times, but all in all we can't complain.  We've been spending a lot of time coloring and reading books.  We've visited friends and even went to see a movie.  We've lined up a new PT and OT plan that will happen at LeBonheur and we've scheduled Lucy's next set of scans for August 2nd.  One day before my birthday.  With all that's gone on lately we know that right now, Lucy is cancer free.  These scans are non-negotiable, though.  Protocol is protocol and we have to stick with the schedule.  I can say, with some certainty, that these will probably be the most stress free scans Lucy will ever have.  (Thank you God.)

While its been nice being home, the reality of being gone from June 3-July 19 is catching up with me.  I feel buried under a mountain of mail, laundry, toys and a to-do list a mile long.  I hate to use this word, but I am "overwhelmed!"  For those that know me its no surprise that I have dealt with anxiety before.  It's amazed me over the past 18 months that I have only had 1 day...1 day when I've had an anxiety attack.  But, get me in an unorganized house with a to-do list and I can hardly breathe.  I have been bagging toys, clothes, kitchen items...you name it!  I have a trunk load to take to Good Will and the Carl Perkins Child Abuse center.  I always feel better after a good purge.  School starts in just 2 1/2 weeks and I just don't want to start in a deficit.


Being home also brings about other challenges that are hard to deal with.  When you have a child that is sick you find yourself at times as close to God as humanly possible and then other times your relationship with Him can seem like a distant memory.  I find myself so focused on Him, so in touch with Him when I have nothing else to do but talk to Him and plead with Him, all day long every day.  I have to admit that the distractions of home and family really challenge my prayer life.  It's quite ironic, actually.  When it comes to Lucy's health I have totally surrendered control.  It's all in God's hands.  I have nothing left to do but speak to God and find my strength through Him.


HOWEVER...at home, its a different story.  When I walk in the doors to my home the Super Mom cape goes on and I'm back in "control."  Things only happen if I make them happen.  Schedules need to be made, dinner menus have to be planned, toy chests need to be organized, PT, OT and gymnastics have to be arranged.  I'm in control.  And, as you can imagine, that's when I start feeling anxious.  That's when I loose sight of God.  That's when my priorities change.  And that's when everything falls apart.


You'd think I'd have learned by now.  Geez!  


But yet, the cycle still continues and I still seem to run the rat race that will never end.  The race that will never be won.  I'm working on it though.  I really am.  When I look back in 10 years, I hope to say that Lucy's illness broke me.  I hope I can see that the barriers were knocked down in my daily prayer life and my daily walk with God.  I hope to be able to truly see all the blessings that have come out of Lucy's sickness.  My eyes have already been opened to so much and I pray that God will continue to reveal those things to me as time goes on.  


I'm a work in progress and I'm not ashamed to admit it.  This road has been painful.  I'll never understand why our family's journey took such a sharp turn on Feb 23, 2011.  None of it makes sense.  But I agree with the great C.S. Lewis and I know that God will do the best for us.  This journey is only temporary and this life is ever fleeting.  This world is not our home and we have so much more to long for. Tonight, I am thankful for a loving and forgiving God.  One who will never give up on me, no matter how miserably I fail.  




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Thursday, July 19, 2012

Hello!

Hello! Have you heard? My Mommy and Daddy came home and brought my sister. I love them so much and I'm so happy!

Wednesday, July 18, 2012

Best News Ever

We are home tonight. Back together as a family.

The biopsy came back and it was clean!!!

Praise God for miracles and answered prayers. We are walking on cloud nine right now.

Thank you all for your ceaseless prayers.

Tuesday, July 17, 2012

Update for Today

I am going to do something I have never done before and that's show a picture of Lucy's incision.  It's not for shock value, but rather to clear up any misconceptions that this wasn't a big surgery.  Please understand that Lucy has had major surgery and your prayers are still needed and very appreciated.  She has a lot of recovering to do and we still have a long time to wait on pathology.  I fear that just because I choose to talk a lot about the positive things in our lives, even the people who are the closest to us loose sight of the big picture.  The road to recovery has been and will be long and hard for Lucy.  Please never stop praying.  


Today Lucy woke up feeling great.  Once again, another miracle in and of itself.  You see her head above.  How in the world she went all day without pain medicine blows my mind.  Well, actually she had pain regular Tylenol after PT/OT.  I would have too if I had worked as hard as Lucy.  She had walked an entire lap around the 7th floor by 11:00 this morning.  Amazing!


Here are three videos from today's PT and OT sessions.  All I can say is that Lucy is one tough little girl and God is very good:

http://youtu.be/-02pmZ4UjLA

http://youtu.be/94UICkm4Rl8

 http://youtu.be/qChXB653NxM


Lucy gets to wear Ms. Lauren or Ms. Amanda's badge walking to the gym.  She can swipe the badge to open the door, but she's convinced she has to say "Open Says Me" before the door really opens.  It's so cute!

I have several things weighing heavy on me tonight.  You would be surprised to learn that waiting on the biopsy results is actually low on the list.  I guess that 18 months of hell will do that to you.  I am ready to know, but I'm not anxious.  I am grateful for this peace that God has granted me concerning this issue.  Honestly, if it is cancer and the doctors think she's strong enough for Chemo, then we will start immediately.  If its not cancer, we have other fish to fry when it comes to school and rehab.  So, either way, Lucy still has a life to live and hopefully its a very long one.  My job is to figure out how to help her live it the best I can.  My job is NOT to sit around and stop living for a week or two while I wait on pathology.   It's amazing how at peace I am with it all.

What's weighing heavy is rehabilitation once we leave the hospital this week.  There's still the issue of insurance and not having pediatric services in our home town makes the scenario even cloudier.  I will be approaching LeBonheur tomorrow morning, trying to get Lucy in their outpatient rehab.  The program is nothing like the school readiness program we are missing in Atlanta, but it could possibly be a good bit of therapy a few times a week.  It will be a miracle if we get approved but I think it would do wonders for Lucy.  School starts in 3 weeks and I am very nervous about sending her without some intensive therapy.

School....that's a whole other concern.  How in the world do I send her all day every day (without me??)  I'm not sure I can mentally and emotionally, but I'm also not sure that I can physically.  And by physically I mean that I don't know that she won't need my help in many areas of school.  Yes, I am overprotective.  But I also can't leave my baby girl if she's not physically able to maneuver school alone.  This is another huge hurdle that has to be crossed.  I am praying fervently that God would make clear this plan.



The lady above is our dear "aunt" Tracy.  She's Dr. B's right hand woman and the Director of the Brain Tumor Program here at LeBonheur.  That means that she handles all the back and forth between here and St. Jude, along with a million other job duties.  Tracy has become like our family and we love her to pieces.  I honestly can say I couldn't make it without her.  Love you Tracy!!  Today Tracy introduced me to the Hays family from Mississippi.  Please pray for their 6 year old son who has a brain tumor.  Thankfully it does not appear to be malignant, but he has a massive tumor that will have to be removed via a long open brain surgery on Thursday.  I had the opportunity to sit down and talk with them for a long time today.  As a couple they reminded me of my sweet friends Kristie and Jerry.  There are so many similarities between the parents and their little boys.  It was very bittersweet as I thought about meeting Justin's family in the same spot (the family room) almost 18 months ago.  I miss my friends so much and I still mourn for their loss.  The memories of both Lanie and Justin haunt me when we are here.  I'll never understand.......

We ended the night on a good note with a surprise visit from our friend the Smiths.  Lucy nearly jumped out of bed when PK walked in!  It thrilled my soul to see her so excited.


There was also a visit from two very special children as well.  Its hard to be sad about life when these three make up the best part of mine (plus their daddy)!



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Monday, July 16, 2012

Resting Well

I was going to type a long post and had great plans to upload a bunch of beach pictures tonight. However, after just falling asleep trying to send a text I guess I'm pretty tired after all. I'll do all that tomorrow.

Here is a picture of Lucy this morning. Totally unaware of what was about to happen and even stronger this morning than yesterday! She's resting well
tonight and has had minimal pain meds. Pretty amazing for a little girl who has a 4" incision and 17 stitches in her head along with a new metal plate!

Out of Surgery

Lucy is out of surgery. We haven't seen her yet but Dr. B said everything went well.

Saturday, July 14, 2012

Headed Home

We are 4 hours into our 8-9 hour adventure home. It's been a wonderful vacation and we witnessed some amazing things out of Lucy. It's hard to believe that there's a possibility cancer has returned to her body. She's been strong this week; stronger than she's been since diagnosis. Not only is her body stronger, but her brain is sharper too. I think even today shes stronger than yesterday.

We have wrestled with our emotions and hearts over the decision to go through with surgery on Monday. Since June 3rd, we've been to hell and back on an emotional roller coaster. We have been told on three different occasions that cancer has retuned. The problem is, this is Lucy. Nothing is ever easy with this girl. So, for the three times we've been told she has relapsed, someone has had to come back and tell us that there is reason to doubt.

No one is to blame for this. The problem is that Lucy has had so much trauma in her brain over the past 18 months that there is never a clear picture when examining her MRIs. Between two bouts of meningitis, resection surgery, over shunting, and the thiamine deficiency...Geez! No wonder the radiologists cant agree.

After much prayer and some rather sleepless nights, Erik and I have agreed to go forward with an open biopsy on Monday morning. Dr. B will perform the surgery, and there is not a man in medicine I trust more. He has always believed in Lucy and her ability to fight. We have to trust that this time is no different. Without a firm yes or no on relapse we can hardly move forward with our lives. We were given the option to just watch the area with scans, but hoping to roll a 7 with my daughters life is not a gamble I'm willing to take.

I dread having the conversation with my children tonight about what's to come. Once again their lives are being turned upside down. Once again Ella and Jack will be away from me and Erik for an unknown period of time.

And the other issue weighing heavily on us is having to start in a deficit trying to play catch up with PT and OT. This week was amazing and it's hard to know that we are going make a choice to knock her back down. But honestly, we don't have a choice do we?

We are making this decision knowing that God will bring us through. All of us, especially Lucy, just as He always has. We aren't in control of our lives. We've come to know that all too well.

And just for some light comic relief after such a heavy post...as we are traveling home we just had to pull the truck over on the interstate to clean up a huge vomit mess! Apparently Jack gets car sick and we are just learning this. Luckily we were in a traffic jam outside of Montgomery and everyone and their mother got to see the spectacle. It was awesome!

Just because you have one really sick child doesn't mean you are immune to the craziness of life. We are learning more everyday how to roll with the punches. I think that saying "what doesn't kill you makes you stronger" is becoming our family motto!

Tuesday, July 10, 2012

Life Is Good

Life is good when your at the beach!

God was in our corner last week and we were able to plan a beach trip in about 3 days. A huge thank you to Dr. Bush who allowed us a week at his condo.

Lucy is the happiest i have seen her in 17 months. Besides the weight of a huge decision about brain surgery weighing on our minds, we are having a wonderful time. My three fish are already water logged!

I am going to take an official vacation from the blog for a few days. I think I owe it to my family and myself to be completely on vacation.

I'll have tons of pictures to post when we get home. Thank you for your
continued prayers. Life is coming at us full force and we are just seeking Gods guidance as we make some really
big decisions.

Until next time!

Saturday, July 7, 2012

Choosing to Live

We are choosing to live. One day a time. Today, Lucy swam for the first time in two years! It was an amazing time for all of us. She was like a fish. My heart was so happy I could hardly
contain myself. What a gift we have been given!