Wednesday, December 31, 2014

Goodbye 2014

I am seeing all kinds of posts on Facebook about ending 2014 and beginning a new year.  After seeing those and knowing the kind of year we've had, I feel somewhat obligated to acknowledge 2014.  So here it is:  Good riddance. 

It's difficult to sum up what our year was like.  It actually blended very well with 2013 which was a trying year for us with Eli's 3rd heart surgery, staph infection, multiple pleural effusions, and seven week hospitalization.  Later that year he was hospitalized again due to the staph and again due to seizures that were later determined to be caused by the combination of his infection and a couple of his medications.  Then Christmas morning 2013 he was vomiting.  After a few hours he felt better and started walking a little bit.  That's when we noticed the limp.  Bryan and I both immediately knew the chances of him having a complication of the staph was as likely as a sprain or fracture.  Have you ever prayed for your child to have a sprain or fracture?  We were.  We never said a word to each other about it because we knew we didn't have to.  If it was the infection there would be plenty to talk about once the diagnosis came, so we just continued our silent prayers for an mild-played-too-rough-on-the-couch-injury.  But by December 30 he had developed fever along with the worsening limp.  We were at Dr. Amy's office that morning and by 3:30 that afternoon Eli and I were in a pediatric orthopedic surgeon's office in Indianapolis hoping he saw some fracture on the xray that we'd all missed.  But no.  He saw nothing unusual about the film but did see what we saw when he looked at Eli...a very ill toddler with a fever and a very serious, complicated history of staph infections and heart problems.  He wanted Eli admitted for further work up and said "I hope that doesn't upset you."  I told him that of course it upset me, but I had also come to Indy with a van full of clothes, our laptop, and other supplies because Bryan and I knew something was wrong.  If that doctor didn't admit Eli, I was taking him to one of his other specialists or possibly the ER to get him in and worked up. 

So December 30, 2013 Eli was admitted four a fourth time that year.  Bryan and I rang in the New Year sleeping on a pullout couch in Eli's room.  New Year's Day, the first day of what was supposed to be a new year, a fresh start for our family, the hospitalist on duty that day got the privilege (I use that term with sarcasm) of telling us that Eli's cultures were positive for staph and he would be staying indefinitely while Infectious Disease, Cardiology, and the cardiac surgeon worked out the best plan.  Over the next three weeks, Eli underwent more scans and tests than I can remember as the specialists worked to determine the origination of the staph.  Some were also calling colleagues around the country to get their opinions because what was happening to Eli was not very common.  Friends with hearts in the right places (and whose opinions we value) gently asked if we were seeking second opinions.  Bryan and I discussed it, but ultimately decided the timing wasn't right.  Eli was still undergoing testing and we didn't have a first opinion yet!  Once the results came in and the team was in agreement that the only thing to do was a Fontan revision (total redo of Eli's third heart surgery) along with pacemaker and wire removal, it made sense to us.  What was there was "bad" and needed taken out.  It was pretty simple.  We didn't want to go anywhere else with strangers taking care of our baby.  We were in our second home with people who loved him.  The three weeks prior to that the team had many disagreements among themselves (no, never in front of us and never unprofessional in front of us but we are bright enough to pick up on unspoken disagreements and don't forget that we've known all the parties involved for several years now).  Bryan and I both knew that everyone involved truly cared about Eli (and maybe even us!) and would make the best decision for him. 

So on January 21, Eli was back in the OR for over 8 hours.  Initially his postop recovery was wonderful.  Then he began having seizures.  Then he wasn't waking up the way he should have or the way he had from his previous surgeries.  More testing led to the diagnosis of his strokes.  Not just a stroke, but many large strokes on his little brain.  We spent days not knowing if he would ever have more than the blank stare and occasional cry that we had to guess if it was related to pain, frustration, boredom, or something else.  Then came some "uh-huh" "uh-uh" answers that were appropriate to questions we asked.  Then one night when the respiratory therapist came in to do his breathing treatment he said "Mommy."  I was so excited I didn't even cry about it until a couple hours later.  Even more exciting than that was a couple days later when Bryan was changing movies for him.  Bryan asked "Do you want Scrat?" which is what Eli would call his Ice Age movies.  Eli answered "uh-uh."  Usually his answers would stop with the one word, but this time was different.  After rejecting the Ice Age movie he said "Madagascar."  It wasn't clear, but it was how he had pronounced that tricky word prior to his strokes.  Bryan and I stared at each other for a minute.  That one word was more precious to hear than him saying mommy to me.  It meant he remembered something (however small) that was important to him before the strokes.  It meant he could put the proper word with a thought and express that to us.  Him saying that was probably the single most impressive moment of his recovery because it meant that Eli, our Eli, was still in there and was fighting to get out. 

His fight continued for many weeks after that.  He is still fighting today.  Not only does our son have to fight every day, every hour, every minute with half a heart to lead a full life, he has to overcome the effects of multiple massive strokes.  And he does.  It's a battle that Bryan, Zachary, and I fight right beside him but Eli is our leader.  And we've followed him through all the stages of his amazing recovery. 

I don't remember where Zachary was last New Year's Eve.  I don't know what he wore to school most days of kindergarten or what was in his lunch because I was in Indy.  Bryan had to play single dad with Zachary again and I was thrown even deeper into the world of insurance, care planning meetings, therapeutic assistive devices, new medications, and keep Eli on a very strict therapy schedule.  Zachary had to go through over half his kindergarten year with Eli and Mommy away from home.  But we all did it.  How?  Beats the devil out of me.  What other choice did we have? 

Yes, 2014 had many, many, many good things that I won't forget.  Eli's recovery, the way the four of us have held on to each other, and the news of expecting our third child are our top three favorites.  I won't rank our least favorites because we really don't sit and dwell on all the negatives.  But they have taken their toll on each of us.  I know life for everyone is full of ups and downs.  I'm just tired of our ups and downs being so extreme.  It's exhausting.  I'm tired of seeing how strong my family can be.  So, yes, good riddance to 2014.  We'll never forget and I won't try to.  However, even though I'm usually somewhat of a sentimental sap who thinks time goes by way too quickly, I'm ready to close 2014.  I don't know if I'm ready for what 2015 may bring, but I know we have each other. 

This New Year's Eve we are spending together.  The boys planned our menu last night so tonight's supper was coneys, bbq cocktail wienies, cheese fries with bacon, macaroni and cheese, and brownies.  We washed it down with cherry Kool Aid.  The boys have had their baths and are now watching ridiculous movies while wearing matching pajama pants from Christmas.  We have a bottle of sparkling white grape juice in the fridge (which I've never tried before) and plan on putting our air mattress in the middle of the living room because apparently we're all having a sleepover in the living room tonight.  I dare any of you to top the fun we're having (that is a sincere comment, no sarcasm anywhere in that).  I had this on my mind all day and took a little time away from Despicable Me to get these thoughts out so I can concentrate on my family for the rest of this year. 

Thank you doesn't begin to express our gratitude for everyone who has helped us in any way, big or small, throughout this last year especially.  Please keep us in your prayers.  That's been the biggest help to us.  We appreciate all of you and hope you truly feel that.  We pray each of you has a safe New Year holiday and many more positives than negatives in 2015.  Happy New Year to all of you from all (5!) of us!!!  And never forget to cherish Every Little Beat...

We Have a New Project...Will You Help Us?

Eli's MVPs is beginning a new project.  We have been so blessed in so many ways.  We have always said we started Eli's MVPs for two reasons:  1) find ways to help Eli through his struggles now and as an adult and 2) to help others.  We have been able to do some small things for others over the years, but now are ready for our biggest project yet.  We are having a Hospital Donation Drive. 

Over the years we've spent many, many months at Peyton Manning Children's Hospital.  More months than I care to count!  Over the course of those months we've been helped by the hospital staff and the Child Life department in many ways.  We've been given toys for Eli to keep him happy during procedures, to entice him to participate during therapy sessions, or even just to pass time on a slow afternoon (not that we had many of those!).  Zachary wasn't forgotten and often received a toy or book when he came to visit Eli.  Bryan and I were given many toiletry items that we either didn't have time to pack or ran out of during our lengthy admissions.  We were also given gift cards for restaurants close to the hospital and sometimes even gas cards to help us with visits and travel.  I have lost count of the number of blankets, stuffed animals, books, toys, and other items we've received over the years from the hospital alone.  However, as we go through items I can usually recall the occasion which each item was given to us. 

Also, throughout our many admissions we've noticed items that are often used but not necessarily supplied by hospital funds.  For example, Eli always had body wash/baby shampoo available to him from the hospital, but rarely was baby lotion available.  We began packing our own large bottle and labeling it with our name so he could be slathered in it after a bath.  It's very important to keep his skin moisturized because hospitals are so dry.  Often, the nurses and aides will take turns buying large bottles of lotion and keeping it in their lounge.  When giving a bath, they'll put some in a small cup and take that to the patient's room.  Other items I found out the nurses bought were hair detangler (especially for little girls for whom thorough hair washings are difficult), nail polish, hair bows, ball caps, etc.  Those items are mainly for kiddos on ventilators.  They help make the child look more natural and it may ease some of the discomfort parents and siblings feel when seeing the patient on all that machinery. 

Some of the things we used often were items that were on loan to us, but were very instrumental in keeping Eli content.  These items include a portable DVD player, movies, use of an iPad, and many toys in the beloved play room (including the Cozy Coupe car that he thought of as his own!). 

Our goal with this Hospital Donation Drive is to purchase items to donate to the hospital so they can be given to patients and their families to help them through their tough times of illness or need.  We are asking for your help with this project.  Here is a list we've complied based on our own observations, input from staff, and the hospital website donation request page. 

Infant/Toddler, Preschool/School Age, and Teen Suggestions:

- baby lotion, spoons, and bibs                                              
- infant, toddler, & child size toothbrushes
- musical crib toys or toys that play lullabies                         
- infant toys (rattles, musical toys)
- board games                                                                         
- Play-Doh
- wooden puzzles                                                                   
- crayons, coloring books, markers, paper, stickers     
- superhero action figures                                                       
- Matchbox & Hot Wheels cars and sets       
- Barbies & accessories                                                          
- journals
- nail polish & manicure sets                                                  
- DVDs (especially teen interest)                   
- building kits                                                                         
- bath & body care products                          
- anything to help little ones breathe deeply and blow (bubbles, small pinwheels, kazoos, party favors)
- anything Colts or Pacers (i.e. hats, shirts, pennants, bobble heads, jewelry)
- popular character toys (i.e. Dora, Sponge Bob, PAW Patrol, Thomas the Train, Disney princesses & other Disney characters, Teenage Mutant Ninja Turtles)

 Comfort Items:

- kid themed pillow cases                  
- fleece blankets                     
- dolls or stuffed animals                   
- pajamas and onesies (all sizes)
- character slippers                 
- socks (especially ones w/grip on bottom)

Parental and Miscellaneous Item Suggestions:

- travel size toiletry items (shampoo, soap, toothbrushes & toothpaste)
- "luxury" travel size toiletry items (lotion, deodorant, hair conditioner, floss &/or mouthwash)
- stress balls                                        
- chap stick                             
- gift cards to restaurants       

This list is just some suggestions.  Other items are welcome but please remember any items donated must be brand new due to infection control concerns for hospitalized patients.  You may also donate money so we can purchase needed items or to be combined with other donations and purchase larger items (such as portable DVD players, Wii and PlayStation games, new release DVDs, etc).  Please remember that the hospital has patients ranging from newborns to eighteen year olds, so a variety is important.  If you donate money, please contact us directly, don't use the collection boxes for monetary donations. 

We are working to finalize drop off sites but currently we will have collection boxes at the following locations:  Daviess County Abstract Company (4th floor German American Bank) and Holiday Inn Express (across from Cherry Tree Plaza).  Or you may contact Eli's MVPs (812-254-7359 or to arrange for drop off, pick up, or with any questions you may have.  We plan on collecting items until Friday 2/6/15 so we can deliver them to the hospital the following week....which just happens to be Congenital Heart Defect Awareness Week (convenient how that worked out, hmmm???).  We are also printing fliers with the suggested items and drop off locations.  We will be looking for places to display those fliers so any offers of help will be appreciated.  Also, if your business is willing to be a drop off location, please contact us as soon as possible so we can get a collection box to you.  We're hoping to have the boxes available beginning the first week of January. 
This is a project we have talked about for a long time and are finally in a position to execute.  It really means a lot to us to give back to a place that has given us so much.  Peyton Manning Children's Hospital employees and staff have saved Eli's life multiple times, made us feel at home, treated us like family, prayed with us, cried with us, celebrated with us, adopted our family for Christmas, and earned the highest respect from us.  Through that facility we have made lasting friendships with staff and other families.  To be able to repay them in this small way and know we are possibly bringing a moment, however brief, of happiness to a patient or a patient's loved one is very rewarding.  Please consider being a part of that.  What a better way to start a new year than by helping hospitalized children?  Thank you in advance for helping. 

Wednesday, December 10, 2014

Ultrasound Results

Yesterday's ultrasound gave us the best news we could get from that level of testing!  As best as they can tell, baby has four heart chambers and working valves.  Yea!!!!  All the other things checked out well too (kidneys, spine, amniotic fluid, etc).  We will still go to Indy in mid January to have a fetal echo.  That will give us more details about baby's heart and its structures.  There will also be other scans that check other areas of the baby.  The more info we have, the better.  

Here are a few pictures from yesterday's ultrasound: 

The tech did a great job of getting a picture of the four chambers.  It was difficult because it's a working, beating heart and hard to get a picture at just the right moment!  Have four chambers ever looked so cute???

Baby's profile
Baby's spine and profile.

And here are a couple of me with a growing belly:
My baby bump!

Measuring the belly.  So far I've grown 5 inches and gained almost 17lbs. 

Thanks again for all the support and prayers. Yesterday's news was wonderful and we are so thankful for that.  We hope everyone is getting ready for Christmas and remembers the true reason for the season!

Tuesday, December 9, 2014

Update and Two Prayer Requests

Hello!  It's been a long time since we've posted and I apologize for that.  For the most part things have been going pretty well.  Eli has battled several small colds, ear infections, pneumonia, and a nasty stomach bug since our last post.  Currently he has a headcold and double ear infection.  This has been almost constant for him this fall.  We may need to look into getting an ENT appointment for him.  First we're trying a different antibiotic to see how he responds to that.

In other news, some of you may not know but we are expecting again!  Baby Veale #3 is due May 4, 2015.  We announced the pregnancy early this time for a couple reasons.  Number one, we lost a pregnancy last year when I was nearly 11 weeks along.  We hadn't yet told anyone I was even pregnant so it was really hard to tell people I was losing the baby they didn't know we were having.  This time, although we didn't know what would happen, we decided we didn't want to risk that kind of heartbreak again.  We told early on so that we could celebrate the excitement of another baby and in case we lost the baby, family would already know and be able to offer their support.  Reason number two for telling early is because I was showing very quickly this time!  I was in maternity clothes by eight weeks! 

Now I'm 19 weeks along, just shy of the halfway point.  So far everything has gone very well.  I'm past the morning sickness phase (by the way, "morning" sickness really needs re-named!).  Now I'm just trying to adjust to my growing belly.  So far today I've hit it with the refrigerator door twice today.  I'm getting better though, yesterday it was four times by lunchtime!  Poor kid. 

Later this afternoon, we'll head to my OB for a routine ultrasound.  Today is the day we could find out if we're having a boy or girl.  But we won't find out.  We didn't with Zachary or Eli and we liked waiting until delivery.  What's a thousand times more important than the gender, is to find out HOW this baby is doing.  Does this baby have four working heart chambers?  Is its heart rate and rhythm normal?  And many other questions.  In addition to today's ultrasound, we'll go to Indy when I'm about 24 weeks.  There we'll have a fetal echo and other scans done.  That will give even more answers to this baby's overall health status. 

So I have a couple prayer requests for Eli's MVPs today:

-  pray that Eli's ear infections clear up and stay away.  Overall he doesn't act very sick, but he has a pretty high pain and illness tolerance.  He's not at 100%

- pray this ultrasound doesn't show anything abnormal for this baby.  As much as Bryan and I are trying not to think about the "what ifs," it's difficult not to worry. 

Thank you all for the continued support.  We're grateful for each of you.  We will post updates to Eli's health and our ultrasound as time allows!

Monday, August 18, 2014

First Day of Preschool

Today Eli went to preschool.  That's such a normal thing to say and I like it!  I wasn't really ready for him to go.  When Zachary was that age, we signed him up in April and he went to school in September.  I was still emotional about it but I had had five months to prepare myself.  Eli's time span was two weeks.  On the very first day of the school year, we got the call to schedule the evaluation with therapists and then exactly two weeks later he started. 

He was as ready as he was going to be.  He woke me this morning saying "I go to school today!  I sing songs and do my stuff."  We kept up the excitement until we actually got in the door at school.  He wasn't so sure then but he kept on.  He has his own little cubby with his name on it for his backpack, but he wasn't ready to take it off.  So he wore it into the classroom and met some of his classmates.  I got a picture of him with his teacher.  Well, he was trying to get away from his teacher, but I got the picture!  Then he gave me a good hug like Zachary does when we drop him off at school.  Eli was starting to get a little whiny but I just told him bye and I'd see him soon. 

Soon after I got home my phone rang.  It was the school.  Oh no, could he have had a meltdown they couldn't handle? (not that I don't trust them, but what else was I to think?)  Did he cry so hard he passed out?  Nope, nothing like that.  Mr. Jim just called to tell me that although Eli had some tears and crying time which was calmed by rocking with his teacher, he was doing well.  I honestly thought that's what he would do, but it was so good to hear that!

Bryan was able to come with me to pick up Eli and he was so cute waiting at the door for us.  He was very excited to see Daddy because that was a surprise.  Then we ate lunch with Aunt Ashley and Mamaw Betty and now he's napping.  He was full of news about his class and said he had fun.  And he said "Yes" when his teacher asked if he'd come back on Wednesday. 

Eli is at a preschool that is associated with the school system in town.  He will go two mornings a week and he will be in regular preschool classes.  Therapists come to the school and he will receive PT and OT through them.  He had OT today.  We're so grateful he has this opportunity to be with kids his age and work on his social skills. 

Here are a few pics of Eli on this big day:

Strapped in his car seat ready to go to school.  His "pack-pack" is on the floor beside him.

The boys wore matching shirts today.  Zachary was so happy for Eli to be going to school.

Walking up the sidewalk to his door.  He was ready.
If you look at his left hand you can see a blue glove on it.  That's his neoprene brace to help pull his thumb out into a more normal position.  He also wears kinesiology tape along his index finger for the same reason.  He wears those things for a couple hours each day (that's our goal anyway!)

Mr. Jim opened the door for Eli just as he was reaching for it. 

Monday, July 21, 2014

Six Months

Six months.  Six months ago this morning we sent our precious, precocious little boy off for his fourth open heart surgery.  We had no idea how long the operation would take, mainly because the surgeon told us Eli's situation just doesn't happen very often and he didn't know for sure how much he would need to do once he "got in there".  So we waited.  And waited.  And waited.  January 21, 2014 was a long day.  Eli was in the OR for over 8 hours.  He was on bypass for almost five hours.  During bypass, the body is chilled (I've never asked how low...some details are better left unknown) and the heart is stopped.  A machine is used to pump the blood so the heart isn't moving as the surgeon operates.  As efficient as the method is, there is no substitute for the real deal and there's a risk of major organs not getting enough oxygen when the body is on bypass.  But what alternative did we have?

After an exhausting day we were told to meet Dr. Abraham in the Family Lounge of the PICU.  That was normal.  When he came in he smiled to see the large group of us who had waited all day (myself, Bryan, Zachary, my mom, my sister, Bryan's mom, dad, sister, and aunt).  And of course we were all wearing our Eli's MVPs tshirts and sweatshirts in various colors.  He told us the operation went well and Eli was being settled in his room in the PICU.  Dr. Abraham was pleased with how Eli was doing and gave us a rundown of the operation.  It had taken him a long time to get through Eli's scar tissue to even start the actual revision of his Fontan.  Everything took longer, but overall Dr. Abraham was optimistic.  He is a man of few words, but he doesn't mislead in any way.  If he was pleased, we knew we could feel the same.  
After another hour or so we were allowed to see Eli.  After his Fontan (the third heart surgery) we thought Eli looked great.  After this revision we thought he looked even better than the last time.  Eli was extubated without problems a few hours later (I had walked downstairs to Subway and when I came back Eli was extubated!).  We were so relieved to see his good color, his good vital signs, and have him breathing on his own.  But that relief was short-lived.  He started having a lot of twitching.  At first we attributed it to the anesthesia (that has happened to him before).  But as the night went on, the twitching increased even with the administration of some medication.  Eventually we knew he was having seizures.  He was also not waking up which is something he had started at this point with his other three surgeries.

I won't repeat everything that happened over the next couple days, but Eli had a lot of exams and testing done.  Finally, they were able to confirm what we and everyone else thought was happening:  Eli had suffered strokes.  One stroke on the left side of his brain and several on the right side of his brain.  The doctors had no guesses what Eli's prognosis would be.  Over the next few days, Eli made a few advances.  He slowly started waking up more.  I had spent many hours in his room praying he would just open his eyes.  His eyes moved around the room but we weren't sure if he could focus on anything.  He fussed and cried.  He was inconsolable at times and we had to guess what his needs were.  Those things, plus all the other frustrating things he was experiencing, were torture, but the worst was just not knowing.  Was this the best he would ever be?  Was he going to improve from this point?  Don't get me wrong, we were so grateful that our little guy was alive (and actually thriving from a cardiac standpoint) but what kind of life would it be?  Would he be bedridden?  Would he walk?  Would he speak again?  Could he see?  Would we ever be able to care for him at home?  An even bigger fear for us, was he the Eli we knew before surgery?  Would that little boy ever be able to show his personality to us or was he gone forever?  It was scary, frustrating, and a blur.

We received lots of support through those times.  Staff from all over the hospital would stop by to see Eli and check on us.  Nurses from the general peds floor came for many visits and gave lots of hugs.  It was hard for them to see Eli like that when they had just spent several weeks with him making him laugh and letting him boss them around.  Often I would catch them wiping away tears as they left.  The Child Life Specialists were always looking for ways to offer help.  One respiratory therapist found out Bryan and I liked purple Gatorade.  The next morning we found a bag with six of them for us.  And of course the messages, emails, and texts from our family and friends was huge.  We weren't able to personally answer a lot of them, but we read them all and cherish the gestures.

The days passed.  Remember those hours I spent praying he'd open his eyes?  Fast forward six months and now I have many times when I feel like a hypocrite for begging him to slow down and go to sleep for a few hours!!!  It's a wonderful feeling!  Not only did Eli open his eyes, he also spoke, he smiled, he laughed, he sat up, he held his head up, he swallowed, he ate, he drank, he walked, he ran, he raised his arms above his head, and many other things.  None of those things have been easy.  We've all worked hard to help get him this far.  He still has a lot of work to do, mostly with that left hand and arm.  But he has come so far. 

None of the doctors were ever pessimistic with us, they were just very honest and said there was a lot of potential damage.  At the same time, they were optimistic with us.  They would often offer stories of encouragement about advances they had seen with other patients.  I don't remember any of their stories having as much recovery as what Eli's had, so I don't know if he's more amazing than their other patients or if they just didn't want to set our bar too high in case Eli's recovery wasn't this good.  Either way, we're grateful for their guidance. 

A large part of Eli's recovery is because he was started in therapies so early after his strokes.  I think he was evaluated and started with physical, occupational, and speech therapies within a week of his heart surgery.  I vividly remember one day when PT and OT were working with him together.  It couldn't have been more than 10 days after his surgery.  Lynn and Erin got Eli to the edge of the bed and then to the floor.  The two of them stood him up and held him there for a few seconds.  It was difficult.  He had no head or neck control, he had no movement on his left side, very little on the right, and he couldn't be held under the arms because he was just a few days out from open heart surgery.  He was very verbal with his dislike for it, but they needed to see what, if any, strength and tolerance he had in his legs.  There wasn't much.  As I watched those two women (who were two of the most instrumental in his recovery) hold him up, I felt faint and was nearly sick to my stomach.  It was a combination of pride for what he'd already overcome, hearing his weak cries without words as we forced him to do something he had no interest in doing, and the realization of how much he couldn't do for himself all hitting me at once.  But I had to get over it quickly and help them get Eli back in the bed.  Because he couldn't be lifted under the arms, it took three of us to get this 35lb+ kiddo back into bed.

Another memory I have was a personal attitude adjustment for me and it came straight from Eli himself.  I work really hard to find the positives in most situations and we've been put in some pretty desperate situations.  However, by this point it was getting tough to stay positive.  It was two or three weeks after Eli's surgery and strokes.  Because of the flu outbreak, the hospital had some very strict visiting guidelines which meant Zachary couldn't visit.  I hadn't seen him for so long and he needed a mommy visit as much as I needed him.  Bryan was with Eli and I was saying my goodbyes.  As I was kissing Eli's cheeks, I was being silly and he smiled.  He SMILED!  It was his first smile since all that had happened and it was incredibly precious.  As I was driving from Indy, I kept thinking about that smile and how it was just as special as his very first smile.  That's when it dawned on me.  Parents are always excited about their child's first smile, first laugh, first steps, and first anything really.  We had all those "first" experiences with Eli and now we were getting to experience them again.  That was the attitude I had to have to encourage Eli through all the pain and frustration he would encounter over the next few months.

Eli spent the next six weeks at Peyton Manning Children's Hospital.  Monday through Friday he had therapy for close to six hours a day.  On the weekend he had about two to three hours each day with therapists plus whatever we could do with him outside of therapy times.  Despite the visiting restrictions because of the flu, he had many visitors from within the hospital.  Even after he was released from his surgeon, Dr. Abraham stopped by about once a week to see how Eli was doing.  Infectious Disease Nurse Practitioner Angie was there almost daily even if the doctor was rounding on Eli that day.  PICU nurses came to see him.  The cafeteria delivery staff (usually women) would go out of their way to come past Eli's room or the therapy gym to see what advances he was making.  Student nurses who had Eli in previous weeks would come see him when they had a free moment from their current patients.  Eli became a fixture in the hallways.  If he wasn't in the therapy gym he wanted to be out and about.  I walked miles and miles around the nurses station, sometimes carrying him, sometimes pushing him in his wheelchair, and eventually he would occasionally walk around the hallways holding tightly to my hand with his right hand.  And because we were there so long, we were able to make some lasting friendships with other patients and their families.  Our two favorites this time around are Maddy and baby Katie.  Both had tough battles.  Maddy has completed chemo and will be starting college in the fall.  This super woman took (and aced!) several college courses while undergoing strong chemotherapy and melting Eli's heart.  Baby Katie fought bravely for a long time and has earned her angel wings.  That's a story I want to share another time because it is one of the most beautiful stories I've ever heard.  Meeting these families and sharing our journeys really helped us. 
Eli was then transferred to Evansville.  I knew St. Mary's was a good hospital, but I was really worried about making the transition.  Mostly for Eli's sake, but selfishly a little for myself.  Immediately we were made to feel at home.  Eli spent just over two more weeks there where he continued to flourish at a rapid pace.  The therapists, nurses, doctors, techs, and other staff were in love with him as well.  I think we'll always consider PMCH our "home" hospital because they have literally seen us through every up and down, but St. Mary's definitely earned their way into our hearts. 
On March 21, exactly three months after Eli's surgery and strokes, we came home.  We were sooo excited and sooo scared!  Eli had major improvements but he still required a lot of care.  He basically needed an adult within arm's reach at all times for the next several weeks.  We continued working with him on our own and he started therapy through our local hospital.  They came to the house and Eli warmed up to them pretty well.  They therapists we had definitely helped make the transition from hospital to home easier for us.  Because of policy change within the hospital we had to switch therapy providers.  Now we use an agency from out of town.  Again I was worried about changing therapists on Eli, but he has adapted well and tries to ignore them as much as he's tried to ignore all the other therapists he's had!
Eli has worked hard.  It's been a struggle for all of us.  We have a lot more to do but we are incredibly proud of where he is now.  The work he has left is a lot of small, detail things that aren't as celebratory as his second first smile or set of first steps, but they are just as important if not more so.  He has to work at straightening out his index finger and thumb on the left hand.  He has to work at grasping things with the left hand.  He has to work on muscle control in the left hand and arm. Countless more hours will be spent doing those things.  Will he get full control back?  We don't know.  He may not.  Early on one of his therapists said usually the most change we see after a stroke happens in the first six months.  I've had that in my head for a long time, as if the condition he's in tomorrow will be it and he won't have anymore advances.  I know that's not true.  I think he will continue to improve.  "Lefty" may or may not recover fully, but we will keep working. 
Eli also struggles with his emotions.  He's very stubborn and cries or screams a lot if things don't go his way.  Some of that could be from the strokes.  Some could be side effects from some of his medicines.  It could be signs of post traumatic stress from all the time he's spent in the hospital versus being a toddler at home.  It could be he's a normal three year old who is pushing our buttons and testing his limits.  Or it could be a combination of all those things.  He used to have night terrors but those have been few and far between for the last several weeks.  Other issues we have to deal with are that he still needs to drink more fluids during the day, we'd like him to eat more so we can decrease or eliminate the nighttime tube feedings, we don't know (and won't know for a few years) how much his vision is affected, as well as a few other things.  He is a lot of work but he is worth every bit of it. 
Thank you to anyone who has had any role in Eli's recovery.  From the dedicated medical professionals to social workers to friends and family and coworkers, thank you for everything.  We also want to express how grateful we are that Zachary is the kid he is.  Zachary is the best brother any kid could have.  He loves working with Eli's therapists during sessions.  He is so gentle with Eli and encourages him to use "Lefty" while they're playing, snacking, using the iPad, and lots of other times.  Zachary is a great role model for Eli and a huge help to us at home.  We really try to let him know how great he is, but I don't think he'll ever realize how much Eli adores him.  We're very lucky to have the family and friends we do who took care of Zachary while we had to be in Indy with Eli.  We're also very grateful for his kindergarten teacher who stayed very informed of what was happening with Eli and would offer extra support to Zachary when he needed it.  Our support system has been vital to us and we are thankful for all of you. 
Since Eli's surgery last April, our life has been filled with one struggle after another.  To get through it at the time, you just do what you have to do.  Now I'm starting to realize how much we've endured and I am starting to feel the effects of the last 14 months.  I am incredibly proud of our family.  We are not perfect but a lot of couples wouldn't have made it through times like this.  We joke that we're just too lazy to get a divorce, but in all honesty, that's never been an option.  We're stuck together even if we don't like it all the time!  And God definitely knew what He was doing when He gave us Zachary and Eli.  I really feel like no other four people fit together as well as we do. 
Thank you for all the prayers.  I am asking that you keep them coming because we know they're working!  God bless you for keeping up with our crazy life and remember to cherish Every Little Beat...

Thursday, June 26, 2014

15 Years After "I Do"...and why I wouldn't marry that guy again

Today, June 26, is our 15th wedding anniversary.  We were so young. 

Now we're....well, not so young!   Why wouldn't I marry that guy again?  He doesn't exist anymore.  We've both changed a lot since our wedding, especially since becoming parents.  And to be completely honest, we've changed a lot more since Eli's diagnosis.

With our wedding vows we promised to love each other through sickness and health.  We didn't know that meant the sickness and health of our children.  We didn't know we'd have to hand over our child multiple times for major and minor surgeries and wonder if we'd see him alive again. 

For eight years of marriage we enjoyed each other's company, traveled, and moved back to our hometown.  We also helped the other through our own personal health issues; he helped me deal with eye problems that involved a lot of steroids and I helped him through kidney stones.  Shortly after we moved back to Washington, we stood together by my father as he took his last breaths.  A few short months later we did the same thing with Bryan's grandfather. 

We got to surprise our families with the news that we would be giving both sides their first grandchild.  Bryan was at most of the appointments and in the delivery room with me. We hadn't agreed on a name until we were holding our son for the first time.  We looked at each other and one of us said, "He's our Zachary."  No doubt, it was the perfect name for him.  And he's perfect for us. 

Two and a half years later we surprised our family again with news that Zachary was going to be a big brother.  Again, Bryan was with me through almost all the appointments and in the delivery room.  My favorite moment was when he brought Zachary in to meet his newborn sibling.  We didn't find out the gender with either pregnancy so Zachary was the first to know he had a baby brother.  Upon seeing Eli swaddled in my arms, Zachary said "He's so cute and tiny!"  Again, another baby who was perfect for us. 

A few weeks later we were both sucker punched by a small woman in St. Mary's Pediatric Intensive Care Unit.  She (who has to have one of the toughest jobs in the world when it comes to stuff like this) had to tell us something was wrong with our newborn's heart.  She drew us pictures.  After we discussed what had to immediately be discussed and she left the room, we sat in silence, staring at our sleeping baby.  We couldn't speak.  We didn't have to speak because we had each other. A few hours later we watched Eli being loaded onto a helicopter.  I couldn't have spent those hours with anyone else.  No one else understood what it felt like.  Only Bryan. 

The guy I married that day wouldn't have been able to look at his child on a ventilator with his chest open.  He couldn't have known he'd be tested on putting tubes down his small son's nose into his stomach for food.  He didn't know he'd have to choose between staying in a hospital room on an uncomfortable couch with beeping machinery or staying away from that hospital for days at a time to spend quality time with Zachary and return to work so we'd have insurance for Eli.  As much as we love spending time with Zachary, I don't know how Bryan stayed away.  I couldn't have, but I'm grateful he did.  He stepped up and provided for us.  And still does.

The guy I married that day wouldn't have gotten up multiple times a night to add formula to Eli's feeding.  He wouldn't have taken Zachary fishing and spent time making sure Z knows he's every bit as important to us as Eli is.  Okay, he might have done those things, but not out of the love he does now.  Now we understand how a simple evening spent on the couch with the four of us reading stories and watching movies can be the best time of our life.  The guy I married couldn't have helped me through a physically and emotionally painful miscarriage last summer that not many knew about.  Together we got through that.  Together we got through being told Eli had multiple strokes and may not wake up.  Incidentally, our lost baby was due fifteen days after Eli's stroke (which was also my dad's birthday).  Emotions were high.

The guy I married that day in 1999 doesn't interest me anymore.  I've found someone better.  Someone I have even more in common with.  Someone who is in love with the person I am now.  Someone who has earned to be loved for the devotion he has shown to me and our family.  No, I wouldn't marry that good looking guy who stood up there with me on our wedding day.  I've found someone better.  Happy Anniversary, Bryan.  I can't even begin to guess what the next fifteen years holds for us but I know we'll get through it together. 

Tuesday, June 10, 2014

Thick or Thin?

Eli's swallow study was great!  The therapist performing the test was the same one who did his last one at St. Mary's.  It was nice to see her again and for her to see Eli!  Even better than that, I love when there's continuity of care for him because he's such an overall complex kiddo. 

In typical Eli fashion, he fussed a little at first, but then he cooperated wonderfully.  He started by eating apples covered in powdered barium (who wouldn't love that?) and drank nectar thickened juice and milk each mixed with barium.  Those went well, as we expected.  Next the therapist tried plain, non-thickened Gatorade also mixed with barium (barium is what makes his swallow visible on xray).  As we watched the xray in real time, no issues were noted. 

After he was done, the therapist went through each picture and video in slow motion to look for any signs of aspiration.  She saw none :)  Because Eli has a persistent cough right now related to allergies and the virus he tested positive for last week, she recommended we wait to start him on thin liquids.  You know when you "swallow wrong" and it "goes down the wrong pipe?"  What do you do?  You automatically cough.  That's one sign of aspiration.  If he already has a cough then we won't know if he's coughing just because he has a cough or because he's aspirating. 

So, technically Eli is cleared to have thin liquids!  We'll just wait a while after his cough goes away to actually take away the nectar thickened liquids.  She did say we could go ahead and give him jello, ice cream, or popsicles which are all things he's not been allowed because of their thin liquid consistency when they melt. 

After we finished with his test we visited the Peds unit.  Even though Eli was only a patient there for 16 days, he became very famous.  Even now when we visit, staff we didn't meet will come out and say, "Oh, this is the Eli everyone talks about!"  We got to see many familiar faces which is always nice.  One of his Occupational Therapists knew he was coming and had asked staff to call her when Eli got there so she could visit.  Eli had fun showing off how well he could run up and down the hall.  He also showed a little work with his left hand.  He had a great game of "toss things I shouldn't because I can get away with it now since I'm so cute and mom won't make me stop with a crowd of admirers."  And, yes, he even invaded the nurses station and tried to use the computers and make phone calls. 

Zachary has been busy the past two evenings with his first Vacation Bible School.  We've wanted to sign him up in years past but the dates never worked out with whatever we had going on.  This week he's going to Our Lady of Hope's camp (at Washington Catholic) and he is loving it.  Next week he is signed up to go to the one at Bethel United Methodist.  We asked him several times if he really wanted to do both and he was adamant that's what he wanted.  However, when I asked him one night he did say he was worried about something.  I asked what and he said, "What if I get confused going to two church schools?"  I was very impressed with his question, as it was coming from a six year old!  I just told him that the point of both was to go and learn about God and Jesus while having a good time making new friends.  Then I told him it's like when Mommy and Daddy each teach him something, but we do it differently from each other.  Like tying his shoes.  We each do it a little differently and told him to chose what works best for him.  I told him going to two bible schools was like that; he can learn from both and use it how he likes.  He liked that answer and asked if there was a third bible school to go to this summer!  I told him two was enough!

It was a busy day and Eli and I capped it off with a stop at Krispy Kreme.  No, it's not the healthiest choice, but darn they're good!  And I'm proud of myself because I've only had one as I type this update (plus the two I ate on the way home!).  Hopefully the boys sleep well tonight and Eli's pump doesn't give me any trouble because this momma is tired!  Eli has therapy first thing in the morning and the nights go very quickly around here!

Thank you for the prayers for a good test today.  Eli cooperated well and we got good results.  He does still have a lot of work to do in therapy, but his progress since the strokes is absolutely amazing.  God is good!

Wednesday, June 4, 2014

The Preliminary Results....

We don't have the final culture results in, but the preliminary reports show no signs of growth!!!  That's the negative we were praying/begging/pleading to get :)  Thank you for all the prayers and expressions of concern.  We've had many texts, private messages, and comments in the last few days asking how Eli's doing and if we have any results.  Thank you! 

If you remember, when we went to Dr. Amy's last Friday (the morning after the fever started & we had cultures drawn) she said Eli's right ear was red.  Sadly, that news excited us very much.  We were hopeful it was just simply an ear infection but with Eli's history we couldn't be sure.  He was started on an antibiotic which he is currently still taking.  Since then, he hasn't had a temperature over 99.5, in fact it's usually 97 or 98.  And, no, I don't take his temperature all the time!  It's not even daily.  Eli has had issues with allergies (as does EVERYONE these days!) although I'm beginning to think he's got more of a head cold than allergies right now.  His nose has been very runny over the past several days and he has a nasty sounding cough throughout the day and especially at night.  The cough sounds like a drainage cough and his lungs sound very clear throughout so I'm not concerned that it's anything more serious at this point.  We're continuing his antibiotic as well as allergy medicine and the occasional dose of Dimetapp as needed for his congestion. 

Eli's still crankier than usual at times and very clingy, but honestly I can't blame all that on being ill.  He's been that way since his last discharge and being sick seems to have exacerbated it some.  You know, like three-year-olds can be!  Right now he and Zachary are dancing to a video in the living room while playing dinosaurs.  I love that my boys can multi-task!  They also made me place a box in the kitchen so they can put important things in it that we will need for vacation (which is still a month away!).  Heaven knows we can't go on vacation without microwave popcorn, special DVDs, and Zachary's binoculars!!!

Again, thank you for the prayers, concern, and support.  More prayers that he gets over this ear infection and head cold are appreciated as well as for the final culture results to be negative. Unfortunately because of Eli's history we will never be comfortable with any fever he has until we prove it's not caused by staph, so this may happen a lot.  Hopefully not for a long time because we desperately need some peaceful moments around here.  Although experiences like this once again make us realize how fortunate we are to have each other and appreciate Every Little Beat...

UPDATE:  About an hour after posting this we got a call from the doctor's office.  The final culture report is in and it is NEGATIVE.  You may begin your happy dance now, we did!

Saturday, May 31, 2014

We Need Negative

Early one morning last week Eli had a temperature of 100.6.  He was seen by our family doc later that morning and of course by then his temperature was normal!  The exam was normal and Eli was acting better so we just chalked it up to a short lived viral issue.  He went home, played, ate, etc in his normal fashion.  Until Thursday evening.  I thought he felt warm when he got up from his nap.  Since he had just been asleep under a blanket I waited to take his temp.  When I did take it, it was over 100.  I waited another hour and it had jumped to 101.5.

Because of his severe history with staph aureus, we have orders to get blood cultures drawn on Eli if he a) has any temperatures over 101 or b) prior to any antibiotic administration for any other illness such as ear infection or strep throat.  Our fear is not the fever itself.  It's actually nice to know that his body reacts normally and can fight infection.  The temperatures he had weren't that high either.  Normally (as a mom and a nurse) I don't treat most temperatures unless they're over 101.  Our fear with Eli having a fever is wondering what caused it?  When he had his fourth heart surgery to remove infected hardware, the surgeon was unable to remove one of the leads from Eli's pacemaker.  Some of those other leads tested positive for staph aureus.  Since then, we've lived in fear of a recurrence of staph.  If a total of twenty weeks' of antibiotic therapy in the last year haven't gotten rid of it, what will? 

So, off to the hospital we went.  Eli was again a brave little boy who had to get stuck not once but twice for blood cultures.  Two samples have to be drawn from separate sites so we can ensure one positive result isn't due to a contaminate.  This time, in addition to the blood draws he also had nasal swabs done (yes, two again) to test for a variety of viral ailments.  He tolerated both of these things very well.  There were lots of tears but he didn't fight.  That's what bothers me the most; no three year old should be so used to needles, blood draws, and swabs that he doesn't put up a physical fight.  After he was done and collected his prizes from the toy box we came home. 

We were finally able to give him some Tylenol to help bring down his fever which was hovering above 101.  He requested popcorn and even though it was waaayyy past bedtime, the four of us snuggled in bed as we watched the Reds and ate popcorn.  Eventually he fell asleep in our bed.  Bryan and Zachary slept downstairs and I stayed with Eli.  Dr. Amy wanted to examine him in he office in the morning and I thought I'd stay up and start packing in case we were looking at an admission in the near future.  But I didn't.  Instead I stared at him a lot.  I slept some.  And I prayed a lot.  How many parents can say they've begged God for their children to be diagnosed with an ear infection?  Or strep throat?  Or even pneumonia?  Yes, those things are still dangerous for Eli because of his heart condition, but not as dangerous as a recurrence of staph could be. 

Eli still had some fever through the night but by mid morning when we were at Dr. Amy's his temperature was normal.  She didn't have any results from his tests drawn the night before as those take 48 hours to complete.  Her exam did show that Eli's right eardrum was red and puffy.  That was a relief to hear.  A partial relief anyway.  We still won't rest easy until we hear that his blood cultures come back negative.  They have to come back negative. 

We're not ready to be so serious again.  Eli's strokes were only four months ago.  We've only been home from the hospital for two months.  Zachary just finished kindergarten one week ago.  Eli and I missed half of Zachary's kindergarten year because of being in the hospital.  Wednesday we were making a list of things to do this summer.  We're just starting to have fun.  Just hours before Eli's fever started Thursday, Bryan finalized plans for our summer vacation.  Eli's first real family vacation ever.  These are the issues that our family will always face.  Even when things are going well, we can never rest easy.  Congenital heart defects complicate every detail of our lives. 

Since Eli's ear did show some reason for concern, he was started on an antibiotic.  He took a good nap and had some playtime with Zachary.  Zachary had a baseball game tonight.  Eli knew Z had a game and started getting ready right along with his big brother.  He had on his baseball cap and kept asking for his shoes.  We constantly have to make decisions about whether or not Eli will go places with us.  We have to balance keeping him away from unsafe/unhealthy situations with allowing him to have normal experiences.  It's difficult.  Tonight as I was forming my opinion on whether or not he'd go, I hated the reason I decided he should go.  If his cultures are positive he'll be back in the hospital for an unknown amount of time.  And we don't know what could happen.  As a CHD family we always hope for the best but have to acknowledge the worst.  Eli went to his brother's game.  We were early and the boys chased each other on the freshly raked field.  I looked at their footprints in the infield dirt and loved that, for the moment, theirs were the only ones.  Hearing their shrieks and laughter as they ran around confirmed we made the right decision by bringing Eli.  Some may not understand that.  Some may think the best decision would be to keep him home, away from crowds and germs.  For us, it was right to bring him. 

I'm sorry I haven't updated this blog often.  Our family life is more than a full time job.  And I've had to make real efforts to take better care of myself so I can somewhat keep up with the demands.  There are so many moments, pictures, and stories I want to share here, for all of you and for us. 

Eli is sleeping beside me in our bed again as I type this.  He's such a perfect mixture of sweet, feisty, innocent, stubborn, and cuddly.   He doesn't have any fever now, but as I wrote before, the fever doesn't scare me.  Please pray that his cultures are negative.  We need negative.  Please, just let it be negative and leave my baby alone.  It's going to be a long weekend for us. 

Thursday, April 17, 2014


I've been playing with Eli this morning and reflecting on the past year.  His Fontan (third open heart surgery) was one year ago today.  One year ago today the waiting room at St. Vincent's Hospital was dotted with colorful tshirts that read "Eli's MVPs".  The town of Washington was dotted the same way.  Eli's FB page was filled with photos of people wearing their shirts in a show of support for Eli.  We also received innumerable messages of support and prayer from many people.

It was a long surgery since the Fontan was expected to take about 5 hours and during pre op testing we found out he also required mitral valve repair.  In addition to that he also was getting his pacemaker so he spent nearly 8 hours in the OR.  Initially he was doing very, very well.  In the coming days he developed some complications that turned into major complications.  All in all that admission was seven weeks long. 

Because you all follow him so well, I'm not going into details about the events of the year.  Let's just say that of the last 365 days, Eli has spent nearly half of those as an inpatient.  And when he's not been in patient, he's had some multiple outpatient issues to deal with such as home administration of IV antibiotics through a PICC line or his ongoing therapies. 

Throughout the past year we've faced many things we never imagined we would.  I'd love to say it's all behind us, but that isn't true.  Congenital heart defects do not "go away".  There is no single surgery, procedure, medicine, or exercise to cure him.  A transplant is not the answer, even if he requires one someday.  Now in addition to his heart problems he has a whole new set of challenges because of the strokes.  Because of all that, we've grown closer as a family.  We've been made more aware of the incredible power of prayer.  I wish Eli never had to go through these struggles, but because he does, he, and the rest of us, will be better because of them. 

There are no words to express the gratitude we have for all the prayers, hugs, meals, donations, gifts, and support from all of you.  Thank you isn't sufficient and I don't know what the next best words are.  Please know that we know how blessed we are by all of you.

To end, I thought I would lighten the mood by telling you how Eli celebrated his Fontan-iversary this morning:  He locked me out of the house while I walked Albert.  Yep, we party hard around here!

Monday, April 7, 2014

Home and Loving It!

We have been home for a little over two weeks now.  Eli has therapy every week day; occupational therapy comes Monday, Wednesday, Friday and physical therapy is Tuesday and Thursday.  The therapists come to the house for his sessions.  That is so wonderful for me.  Eli loves getting to go places, but it is hard to take him out these days, especially by myself.  He's a busy and active three year old but has balance issues, can't use his left arm much, and is still wobbly on his feet because he's only been walking for a little over a month.  Let's just say that the majority of my days are spent within arms' reach of the boy.  It's tough to keep myself that close and yet not help him too much.  He has to learn (relearn) how to do things for himself.  Having therapy at home is building his confidence as he maneuvers his way around the house.  Overall he has made lots of improvement but of course there's a long way to go. 

Health-wise he's been doing pretty well until late last week.  He developed some allergies and/or a cold.  That's been getting better but he's still got a runny nose and red, goopy eyes.  The good news is that he hasn't had any fevers with it.  We know he will be sick at some point again and he will run a fever.  However, we are so fresh from his recent bout with staph aureus that it really scares me.  I don't know if you remember, but after Eli's most recent heart surgery it was determined that the staph was in the graph in his heart, in the wires used to close his sternum, and on the pacemaker leads and wires.  The graft and sternal wires were replaced and the pacemaker was removed.  All but one of the pacemaker leads were removed.  There was one lead on his left ventricle (his only working ventricle) that Dr. Abraham couldn't remove without causing too much damage.  The unspoken fear for us and Eli's entire healthcare team is that the staph could still be hanging out on that lead even after six weeks of IV antibiotic treatment.  That one lead is the reason Eli cannot ever have an MRI and why I will forever have heart palpitations and be sick to my stomach anytime we even think he has a fever.  He had his antibiotics and now it's just a waiting game as we pray the staph is gone. 

Let's move on to the more exciting news around here! 

Zachary  I always talk about Eli, let me brag on Zachary for a little bit.  You all know what an awesome kid he is and if you don't then just take my word for it.  He is so glad to have his brother home.  Probably glad to have me too, but it's so rewarding to see how much he loves Eli.  Even through all the weeks we were apart he kept working hard in school and hasn't really acted out in any crazy way.  There are some things that come up from time to time but we just deal with it as it comes and nothing has been as bad as it could be with everything he's endured.  For St. Patrick's Day he had an assignment at school.  When I saw this it brought tears to my eyes.  He had six wishes to make and here's what they were:  Disney Cruise, Turbo Fast (a movie), a huge pizza, for Eli to come home, an airplane museum, and a real dinosaur.  It melts and breaks my heart that he used a wish for his brother to be home.  Most kids would like to give their little brothers away (and I'm sure there are times Zachary wants to as well), but he gets how special it is to have Eli home because he knows how rotten it is without him here. 

On April 2nd Zachary lost his first tooth!  While we were apart, one of the things I was afraid of missing would be his first loose tooth and losing it.  We got home on a Friday and on Saturday night I was giving the boys their bath.  Zachary was roaring like a dinosaur (surprise) when I noticed something in his mouth.  On closer inspection I saw that his permanent tooth had already broken through behind his baby teeth on the lower jaw.  His response?  "I thought something felt weird."  Then we checked his teeth and found that he had a loose one.  Several days later he and Eli were playing in his room and he came running out yelling about blood and his tooth.  I was sooooo happy we were all together for this occasion for him. 

The hole from Zachary's first lost baby tooth.  He was a very excited little boy!

Little League  Washington's Little League Opening Day is on Saturday April 12.  Our boys have been asked to throw out the first pitches of the season.  We are so excited.  They talk about it at home and have some practice, but I'm really curious to see what happens when we get there in front of a crowd of people!  Eli will throw the baseball first and then Zachary will throw a softball.  If you're going to be at the Sports Complex watching your little loved one that day, please wear your Eli's MVPs shirt.  Eli gets a big kick out of seeing his shirts on people.  He's starting to grasp the support he has around him...even if he doesn't know why!  We are very excited for Saturday and I can't wait to see how the boys do!

Motorcycle Ride  A group from Washington is sponsoring a benefit for Eli.  This is also on Saturday April 12.  Because of the Little League obligation we won't be able to attend the departure from downtown (with police escort!).  We are planning on being at the Krome Khaos club house when they return.  This event is like nothing we've ever participated in before and we are so grateful to those in charge who heard about Eli and want to help.  We plan on using any funds raised to help purchase a special trike like he used at Peyton Manning Children's Hospital.  We thought it would be fitting for the bikers to help buy him a bike!  Eli's bike will have foot and hand pedals. The combination hand/foot drive builds strength and coordination as well as increases range of motion.  It helped him a lot physically and mentally at the hospital and we want to continue that at home.  Depending on his size and needs, these trikes (called an AmTryke) can range from $400 to $800 or more. 

If you ride a motorcycle and want to participate, here's the info on the ride. 

Shirts and Bracelets and Pizza Hut Coupons  I will be closing out our Eli's MVPs tshirt and hoodie order soon.  I wanted to have it turned in and done by now, but of course life has other plans.  Our hard drive fried on our laptop and that took the whole computerized spreadsheet I had of all the orders.  Luckily I still had a paper trail of orders but that's taking time to get them entered into our new spreadsheet.  Thank you all for your patience.  I haven't forgotten and I definitely don't mean to put you off.  If anyone still wants to order a shirt let me know by Monday April 14th please.  Also we still have Eli's MVPs bracelets for sale ($3 each plus shipping if necessary) and we have coupon cards for Pizza Hut ($10 each).  Contact us via Eli's Facebook page or email us at

Thank you so much to everyone who has brought us a meal as we adjust to being back home.  I cannot tell you how helpful it has been to not worry about cooking everyday.  It's hard to do tasks like that when I need to be so close to Eli all the time.  The main problem with having these meals brought to us is that my family is figuring out I'm not such a great cook!  The food has been delicious.  We think it's because it was made with love.  Thank you!  If anyone wants to sign up there are some dates left.  Go to  The recipient name is Veale and the password is Eli's MVPs.  Or you can contact us through his Facebook page or email to set something up.  Thank you again to anyone who has helped out. 

We are so grateful for all the support and prayers from all of you.  The phrase "miracle" is not something I use lightly, but I really believe Eli is a miracle.  He has made amazing progress since his strokes.  For the first week we truly didn't know if he'd wake up.  Once he did, his progress was slow at first.  Our big excitement was when he moved his eyes from one side to another.  Now he's bossing us around and pestering his big brother like he's supposed to.  We know his progress is due to all the prayers that have been said for him.  Please keep praying for him.  He has a lot of work left to do and the majority of our time is spent trying to find ways to make everything he does therapeutic in some way. 

I'll end with a sweet picture of the boys.  It was taken tonight as they were playing in the living room.  These two are our whole world and we couldn't ask for anyone better.