Fall Update

I love that it has been awhile since I have updated.  Frequent posts usually mean something is up and not in a good way.  While Zack still has a lot going on, most of it is seems pretty mundane and not at all interesting to write about.  Over the past few weeks, Zack has had a few new things going on, so the time is right to update once again.

On Monday, Zack’s surgeon in Boston reached out to us to let us know that the team there (GI, surgeon and pathology) had gone over all of Zack’s previous testing and biopsies and everything looked “pretty normal.”  Given that nobody can figure out what caused Zack’s colon to stop working or why he has such high output, this really was not surprising.  We are still waiting to hear what Boston’s pathology department thought of his eosinophilic ganglionitis and hypertrophic nerve cell slides.  Those are really the only ones we have ever had come back questionable.

Last week we met with Zack’s surgeon at Walter Reed for a routine follow-up.  Since he recently returned from a six-month deployment, we wanted him to actually lay eyes on Zack and bring him up-to-date on everything we learned in Boston.  Zack’s surgeons do actually talk when necessary, but going over the emergency game plan we came up with in person made me feel much better.

One of the things that both GI doctors and both surgeons seem to agree upon is doing a trial of high dose steroids with Zack.  I have no idea what constitutes a high dose, but for sure more than the 5 mg he was on in 2015.

I was able to tell them that because Zack’s colon worked, then had zero motility, then worked in small areas and then did not work at all again, I am reluctant to try another reattachment of the entire colon.  Happily, that is not the intent of this trial.  The majority of his colon is definitely done.  Because he has had and continues to have such weird issues with his ileostomy that are hard to manage well, the best option would be to reattach his small bowel to his rectum.  As I have said many times, his high output makes this a bad idea because it would likely leave him incontinent.  Nobody wants that.

The current ideal scenario would be to find a small portion of the colon that actually works to help absorb fluid and save that to help make reattachment possible.  I am not sure how this would be tested.  Even if the steroid course helped some portion of Zack’s colon function again, he cannot be on steroids forever.  We still would not know the cause of the colon failure and how to keep it from happening again. So many questions and things I do not yet understand.

I believe (again…not sure I am correct) one of the questions the doctors have is if Zack’s issues are related to an autoimmune issue and if they do not try the steroid dose, are we risking long term harm to the rest of Zack’s intestines?  Not having a diagnosis makes things tricky.

To try and tackle the high output and low sodium issue, Zack began a new drug called Cholestyramine.  It is a drug typically used to lower cholesterol levels.  It is also used in people with high output ileostomies and chronic diarrhea from gallbladder removal to help slow things down.  It works by binding bile acid to help keep water in the intestines.

At first, Zack had a day or two of thickened output, but the volume remained high. The past few days his output has been back to the normal watery consistency.  It is possible that it is keeping his sodium levels up, but we have not had labs to confirm this yet.  I am basing this soley on the decrease in the number of times Zack is attempting to raid the pantry in search of the Morton’s salt container. Hey, I have a hypothesis, I am making observations and soon I will have actual sodium measurements to support my hypothesis.  It’s all part of the scientific method….I could be a scientist in addition to a doctor…you never know!

Zack’s stoma continues to be worrisome. It continues to swell during the day restricting output.  On Monday, Zack had zero output for over eight hours.  His school nurse said he was off that day.  His behavior in school was not stellar either.  Tuesday he told us that he felt so much better and that his pain had been up the day before, he just did not want to tell anyone.  Tuesday he had high output and today I heard that he did not have any output before lunch.  I will be interested to see how the rest of the school day goes and what his stoma looks like when he gets home.

Zack is used so used to living with some degree of constant pain, that it is just part of how we do life.  I often wonder, though, if on the days where he is extra crabby if pain might be a reason.  Honesty in rating his pain level to others is not one of his strengths, even when he is really sick.  Admitting he does not feel well usually leads to a decrease in fun and an increase in doctor visits and he is not having that!

I talked to his surgeon here about this craziness – the swelling, lack of output and pain. I asked him if I had permission NOT to worry about it since Z’s stoma is not technically prolapsing.  He said I still need to worry.  I already knew that, but I was hoping that he would tell me I was being ridiculous and to chill out.  The dreams I have in life are really pretty simple…..

Given all that, things are still millions of times better this year than the previous three years.  Zack went Trick-or-Treating and walked the entire neighborhood for the first time ever!  He participated in his school fun run and was able to run/walk 4 miles!  The biggest news is that he went two months without an actual doctor visit.  Granted, I still communicate via text with his GI most weeks and Z still has frequent labs, but not having an actual appointment is huge.

img_6368Because things are better around here, I was actually able to go and visit our oldest son in Texas.  Drew is in his second year of graduate school at the University of Texas in Austin.  He has been there over a year and this is the first time I have been able to travel to see him!  It was a wonderful weekend and, as a bonus, I was able to spend time with family and friends in Houston, San Antonio and Waco.

img_6353Our family is also getting excited about another exciting development.  Because Zack is doing better, we are getting a puppy in January!   We intend to train this new pup to become a therapy dog with the hope that he will be a comforting companion for Zack both when he is sick and when he is well AND that as he gets older we can bring him to the hospital to visit other children who need some love as well.  We are all very excited, especially Zack.  He cannot wait to meet the puppy and has already picked out a name – Captain Awesome Penrod.  We many need to work on that!

Hug your babies!

~ Dawn

A Quiet Day

Summer has come to an end..sniff.  What fun we had enjoying almost every minute.  We are grateful for all of the friends we got to see and play with as well as all of the fun places we were able to visit.  We have been on a lucky streak.  No sickness, few hospital visits and NO hospital stays.  Life has been pretty great.  Can you tell where I am going with this?

Yesterday Zack was pretty teary.  Jim and I thought it was because he slept outside in a tent with his cousin.  Slept is used loosely in this story.  My brother and Jim were supervising the night and I have heard that the boys were up late and woke early.  It would not be fun any other way!  When Zack was having a rough day, we just attributed it to his fun night.  His output was pretty high, even for Zack.  We noted it, but did not think he was sick.  We figured it was just a weird Zack thing.

Fast forward to last night.  Zack had started some new medication last week to help manage his anxiety.  One of the glorious side effects is that it makes him sleepy.  Prior to last night, he had slept through the night for seven nights — in a row!  This may not seem like a big deal to you but, in our sleep deprived world, this is huge.  Huge I tell you!  We had forgotten how wonderful uninterrupted sleep can be and how much nicer we are when we get it.  I still have not gotten to last night…

Last night as we high-fived ourselves in advance for the wonderful night of sleep we knew we would be getting, the universe laughed.  Just kidding.  We were blissfully sleeping when all of a sudden “MOM!” rang out in the house.  You know, the kind of yell that rips you out of sleep and has you fully awake knowing something is wrong?  Zack was crying for his pain medicine because his belly hurt.  We disconnected his feed and tried to see what was happening.

It was clear that Zack was very uncomfortable.  I tried venting his belly.  I gave him Motrin.  I rubbed his back, his belly, his head.  I finally just climbed in bed with him and tried to help him get comfortable, but it did not work.  Zack told me he wanted me to text his doctor so that he could help him feel better.  Those words are NOT the words I like to hear, ever, especially not in the middle of the night.  Zack was telling me that he thought his g-tube was taping his intestines and obstructing them.  I did not think he was obstructed because he had such a large amount of output so quickly, but his belly was hard.  I asked him if he needed to go to the hospital and he said no.  He just wanted his doctor to make him better.

Zack ended up getting sick around 5 a.m. and falling asleep (thankfully) at 6.  When he woke up at 8, Jim and I decided to text his doctor to let him know what was happening.  Zack looked pretty rough and we were not sure how the day would progress.  After our January fun, we did not want to take any chances.  This is how he looked when he woke up.

fullsizerender2Cue the dehydrated, sunken-eyed look.  The one that makes his parents a little (a lot) worried.  We always feel better when his doctor knows what is happening in these situations, even if we do not end up going to the hospital.  We got some advice from his doctor and have spent the day watching him closely.

Zack’s biggest regret of the day was having to miss the annual Nathan Chris Baker Foundation Fun Day.  He looks forward to going and playing with his friends and getting a new shirt.  This year I went alone and got my guy his shirt.  It was not quite the same as getting to go himself, but the shirt made him happy. I think it is obvious from his face in the following picture.  What do you think?

img_6225Zack spent most of his day on the sofa(s) sitting quietly.  Definitely an abnormality for him.  Jim and I are feeling better about how he looks and he has been asking about playing Wii later.  Z has even begun discussing the possibility of eating dinner.  I am hoping that he will feel well enough to go to school tomorrow.  Maybe this was just a stomach bug?  The problem with Zack is that we never know.  I guess time will tell.  For now, we are thrilled that we were able to keep Zack home and that he appears to be getting better….fingers crossed!

~ Hug your babies!


Vacation and Boston

Oh vacation, how I have missed you so.  Our family had a great time visiting family in Connecticut, playing in Bar Harbor, Maine and exploring Boston between doctor appointments.  Here are some of our highlights:

Boating in Connecticut.  Zack’s first time on a fishing/lobster boat and he loved it!  He was a man of many questions and is forever bonded with Captain Don.

IMG_20160813_231343_01Zack helping Captain Don drive the boat.

IMG_20160813_162355656Jake and Jim could get used to Zack doing all the work.

IMG_6164Zack and his shark.  Not bad for a first fishing trip!

IMG_20160813_220526112_TOPThe Co-Captains relaxing after a hard day on the water.

Exploring Acadia National Park.  I am not sure how we have so few pictures of this.  Here are Jim and Zack on top of Cadillac Mountain trying to pick up one of the islands in the harbor.IMG_6152

Bar Harbor adventures.  Jim, Zack and I took a 4 hour sea kayaking tour.  See those islands in the picture above?  We paddled to the third and took a break.  Then we went around the third and back into shore.  We saw some porpoises and bald eagles.  Happily, we did not see any of the sharks that also inhabit the harbor because that would have freaked me out.

IMG_6118 IMG_6110We rode the carriage trails in Acadia National Park on bikes.  We ate popovers at Jordan Pond, frolicked on Sand Beach, drove around the entire island and shopped and ate and had a grand old time.  Zack and I also went on a date on Diver Ed’s boat.  Diver Ed scuba dives into the harbor and videos the ocean floor as he goes.  The video is broadcast on board.  Then he comes up with some of the creatures he finds down there and the kids get to touch them all before releasing them back to the ocean.  Zack was so enthralled with the whole thing until the touching part.  He finally worked up the nerve to touch a few things.  Can you tell how hard it was for him to do it?


After a week of fun, we headed to Boston to see Zack’s doctors.  First we met with Zack’s surgeon.  It was strange to see her in a new hospital, but she was as awesome as ever.

While Zack is currently doing better than he has in years, we still have some concerns.  You may have noticed that I have been talking about how his stoma has been swelling which constricts his output during the day and then goes back to normal when he rests.  His surgeon and doctor here both feel he is prolapsing internally.  One thought is that where his stoma was stitched down internally actually worked this time, but his intestines before that point internally are still trying to get out.  We think they are getting stuck at that point, cutting off the flow.  Thankfully things have been resolving well so far, but it is not supposed to be happening.  We have a plan in place now for IF things go wonky.

Today we met with one of the leading pediatric motility experts in the nation.  He asked us lots of questions.  He said that Zack’s case is interesting because there is a lot going on that does not make sense….yet.  He is hopeful he can figure out what is happening with Zack.  He did say that just because Zack’s small intestine manometry test was normal does not mean his small intestine is functioning normally, just that things are being pushed through.  We talked about Zack’s biopsies that showed eosinophilic ganglionitis, the possibility of autoimmune issues and other things, but he wants to review all biopsy slides, testing, fluoroscopies, manometries, CT Scans…basically everything that has already been done…for himself before giving his opinion.  Jim and I appreciate that and think it is a good idea.  Of course, Zack’s files from both Cincinnati and Walter Reed are so incredibly large that it will take some time for him to get through it all.

The doctor said that there are several drugs we can try to help slow down Zack’s output.  He wanted to talk to his surgeon about a few things first, so we do not have a plan for that yet either.  Even though we left without a plan, Jim and I felt that he was very thorough and we really appreciate that he wants to understand why Zack’s body is behaving this way.  Why does he have secretory diarrhea?  Why doesn’t his colon work?  Is there also a problem with his small bowel?  All questions his other doctors have asked before and have not been able to answer.  Somehow I feel good about his method of investigation and have hope that perhaps he will be able to narrow things down a bit more.  It is good to have hope.

While we were in Boston we were able to connect with some of dear friends that we had not seen since 2011.  We spent a great day at their home catching up.  Why do we wait so long to do these things?  Oh yeah…intestines.  We were also able to see a friend from our time in Minot.  Her daughter has been in the PICU since DECEMBER!  December people!  I am happy to say that her daughter is getting close to getting out of the PICU and to finally going home.  It is amazing to see her faith and strength.  It was a blessing to me to be able to spend the evening with her.

So there you have it, an exceptionally long update.  We are so thankful for our vacation and our time in Boston.  We are thankful that we had a fun time as a family.  We are happy that we were able to come to Boston for a non-urgent visit.  We are happy to have scoped out the area, found a hotel close to the hospital and to know we have friends close by.  While we did not have time to see all of our friends here, we know we will be back! Until then…

IMG_6104Hug your babies!

~ Dawn

A Summer of Fun!

It’s official.  We are having a great summer!  Finally!  We have been having so much fun doing normal summer things, that I have not had time to update.  Now that is a problem I can handle.  I do not want to sound greedy, but I hope to have the same problem next summer and every other summer for years to come.

Remember Zack’s summer bucket list?  Learn to play tennis?  Zack worked hard all summer and can now actually hit the ball most of the time.  Serving is still in the infancy stage, but it involves multiple steps and movements and that has always been a challenge for Zack. This time I actually have some pictures!

IMG_6044Working on his forehand.

Zack and his amazing coach!  Mr. Brecker is our girls high school tennis coach. During the summer, he runs a great tennis program for kids in our area. He has the amazing ability to give meaningful praise to every child.  I believe this is the main reason Zack loves tennis.  He believes he can do it even when it is hard and his body doesn’t cooperate like the other kids because Mr. Brecker believes in him.  You know I love that!

IMG_6072End of season award for working so hard on his serve.  He loves his new “Sport Glasses.”

Zack FINALLY began karate a few weeks ago.  We had been trying to get started for a few months, but had a few obstacles in our way.  Once we got those resolved, Zack was thrilled.  The most exciting part for him?  His uniform.  He has been wanting to be in a sport so he could wear a real uniform.  It is always great when a dream is realized.  Especially when you are nine!

IMG_1806IMG_1808Another dream our boy had was to learn to climb a tree.  We found a tree with a low branch.  He got up on it and felt pretty cool.  He thinks we need a tree house in our yard now.  Too bad our trees are still too little….or maybe that is a good thing!

IMG_6076We are leaving soon for our first vacation in three years.  You’ve heard me say that a few times now, but I keep on repeating it.  Three years, people!  We keep on pinching ourselves.  We are thrilled Zack is finally well enough to do this.

While things are infinitely better than they have been, we are still watching the normal bothersome issues.  Zack’s sodium levels continue to be a pain.  They are low again this week, but that is most likely because his output was crazy this week.  We are so happy that Zack’s doctor’s discovered CeraLyte.  I believe that CeraLyte has helped keep Zack out of the hospital these past few months.  We seem to be able to manage his sodium even though it is still low.  Zack’s doctor frequently checks his labs to make sure he is safe.  We still do not know why his stoma loses so much fluid daily.  It would be nice to figure that out one day.

We are still dealing with his pesky stoma swelling and constricting his output.  Things are still manageable, so I am trying to relax about the whole thing.  Note I said trying.  I tend to get freaked out when hours go by without output and when his stomach is no longer soft.  It is really hard for me to imagine this will not get worse, but so far things are resolving with rest.

I guess with all chronic illnesses, finding ways to manage things is key.  I feel like that is what we are doing now.  I much prefer managing things to going from one crisis to another.  Score one for Team Penrod.  It’s about time.

Now, about that vacation…..

Hug your babies!

~ Dawn



Zack’s Summer Bucket List

Time for summer vacation with a HEALTHY boy!  Yes, I wrote that.  No, I am not worried about jinxing Zack.  I mean, we still have to track his sodium every other week, but that is a piece of cake.

This is the first summer we have had in recent history with the very real possibility of making plans and having them actually happen!  I had Zack make a list of things he would like to do over the next few months.  I’ll share them with you in a bit, but first an update on Zack’s medical stuff.

Zack’s sodium level continues to be detectable with an odd off week every now and then.  His stoma is behaving, mostly…We are watching a rather new development.  While Zack is not prolapsing, his stoma is swelling with exertion and is painful again.  Zack has begun assuming his pain position when this happens and also asks for Motrin more regularly.  When his stoma swells, his output slows way down.  Happily, his output starts back up again once he actually relaxes.  I know I always say his output is too high and now I am complaining about it slowing down.  The problem is that his output is artificially slowing.  It is slowing because his stoma is swollen and blocking the flow, not because it is actually doing what we need it to do.  Jim and I are not overly concerned yet, but we are definitely keeping an eye on the situation.


The famous pain pose.

In addition to Zack’s medical update, I have a school update.  Zack had a big neuropsychology appointment at the Kennedy Krieger Institute today.  Zack underwent 5 hours of testing, and we received some interesting news.  Zack’s cognitive ability is significantly higher than his performance in school.  The doctor (PhD, not MD) believes that his cognitive ability is strong enough to be able to graduate from high school, but he will continue to require special attention.  We also know he’s not crazy, we had him tested.  I do not have the official written report yet, just what Jim and I wrote down and our memory of what was said.  Because of that, I am afraid to write more about it as I might get the terminology wrong or say something incorrectly.  You will just have to stay tuned for a more precise update later.

Now, about that summer list.  I love my Zack.  His list makes me giggle.  One week into summer and he has already accomplished almost everything on his list.  I might have to help him think of more fun things to do.  I keep saying this is the summer of Zack!

  1. Get socks without holes.  Um, child, if you put your shoes on before going outside as directed, your socks would last a LOT longer.  Just sayin’.  The boy now has many pairs of socks without holes.
  2. IMG_1621Learn to swim and go to Aunt Becky’s to swim lots of times. Technically we are still working on this, but he is in swim lessons so I count that as being done.  All he has left is to learn to breathe.  You know, the most important part of being able to be in the pool without your parents.
  3. Play tennis.  Tennis lessons began last week and Zack actually hit the ball several times –  in the same lesson.  That is a huge improvement from last year.  AND he actually paid attention to his coach during listening time.  Score!  Sadly, no pictures.
  4. Go bowling.  We learned that Zack is a bit OCD about color coordinating bowling balls on the racks.  Who knew?IMG_5915
  5. Play WiiU.  Bribery for good behavior wins again here.  Zack got a new game for behaving exceptionally well today during his hours long testing.  That is pretty hard to do when you have a pretty good case of ADHD and your meds wear off.
  6. Go to the library.  Zack signed up for the summer reading program and is eagerly reading to earn tickets for raffle items at our library.  Bribery really works for this kid.
  7. Get a puppy.  Well….now here is one that we have not yet accomplished.  BUT since Zack is doing so well medically, we are actually in the process of figuring out the puppy situation for either the fall or spring.

There you have it folks.  I am enjoying posting happy things.  I would really like to make that a habit.  Are you listening stoma?  I am enjoying having my boys home for the summer.  Most of all, I am enjoying having a healthy Zack and hoping it continues!



Hug your babies!

~ Dawn

Fun Things

Last week was a crazy fun and busy week.  It started off with Zack getting his PICC line out!  Zack’s doctor really only likes to leave them in for 30 days.  Zack’s was in for 5 months.  I am not complaining at all because according to our awesome neighbor who helped him during the blizzard, the PICC line helped to save his life.

Zack had gotten so attached to it that we had to slowly introduce the idea of getting it out.  As I mentioned in my last post, Zack was afraid of life without his PICC because he was worried that he would get sick again and thought that he would have to be poked way too much.  In the end, the lure of swimming, karate, recess and taking baths again won out.  Zack is most happy about having a line free arm at night.  He says it is much easier to sleep now.  For him….because he is still waking up at night….I’m not bitter…..

Another highlight of our week was the Mother/Son Dance at Zack’s school.  Zack’s original plan was to take me on a date for dinner, but the lure of Domino’s pizza won out and we had a picnic on the family room floor. He was a gentleman and made sure to tell me I looked very pretty.  He also led me onto the dance floor for every slow song and never once stepped on my toes.  Look out ladies!


Zack had so much fun running around with his friends and being a dancing machine that, for the first time in months, his pain pose returned.


While his stoma was pretty big and ugly, it did not prolapse.  Zack’s belly hurt for the next two days and he actually sat quietly and took a nap.  Monday morning had me a bit concerned when I found him curled up in the bath saying his pain was yellow, but he had a good day at school and was totally back to normal by Tuesday.

On Saturday, Zack had the privilege of helping the Nathan Chris Baker Foundation with their first ever Great 5K.  Zack and our family manned the 1/2 way point water station.

When I say our family, I mean everyone who lives in the DC area.  Mom, Dad, big brother Jake, his Grandma, two of his Aunts and two cousins.  We could not have done it without their help.  We were also helped by my running group, Flying Feet, which donated the cups and coolers.


Zack did a good job helping to fill cups and cheering for all of the runners.  “Go Out.  Be Great!”  It was the cheer that kept on going, for every single runner.  I was very proud of Zack and his determination to help support this event.  He did an awesome job giving back to this foundation that has become very dear to us.


Zack and Tate the Great.


Zack and his cousin, Ronnie, after the race.

The last noteworthy thing that happened this past week is that Zack’s hearing is within normal limits for conversation.  With his history of hearing issues and current struggles in school, his Developmental Pediatrician wanted us to revisit his hearing and have another check-up.  The audiologist said his right eardrum could have done something better, but since he was hearing conversations well it was pretty much a non-issue. Therefore, I have no idea what the issue was as it has already been dumped from my brain.

As you can see, the world of Zack is looking pretty good at the moment.  We have passed the 5 months since his last surgery mark.  We are coming up on 4 months without an admission.  PICC line is out.  Sodium is detectable and even pretty great.  We have not been this stable for the past three years!  I have to say, we could totally get used to this!!

Hug your babies!

~ Dawn



Special Olympics 2016 – Part 2

I promised my family more pictures of the Special Olympics.  I promise I have plenty.  First, let me lead with this awesome news.  Zack’s urine sodium level was 141 this week.  That is pretty spectacular considering how incredibly long Zack’s level was less than 10.  It is so good that Zack’s doctor is just about ready to pull his PICC line!  Zack still needs a bit of convincing.  He is worried about getting sick again and having to be “stuck a thousand times”.  The promise of being able to finally run around and climb at recess, learn how to swim, take karate lessons and enjoy an actual bath again are starting to win him over.

Now about those pictures…

Zack and the long jump.





Nailed it!

IMG_0910Anxiously awaiting his medal. His lips even match his shirt.  He goes all out for fashion.


Is there anything better than getting your medal from an actual policeman?


Each child is assigned a buddy and this year Zack’s was Chailey.  She was amazing with Zack.  Here they are running the 100-meter dash.  Zack is being congratulated by his classmates.


Chillin’ with some of his cousins.


Another awesome cousin.  Zack had quite the cheering section.  Grandma and Aunt Becky were there as well as several friends.

Freedom Elementary School Students cheer for their classmate at the Special Olympics at Westminster High School on Wednesday April 20, 2016.KEN KOONS/STAFF PHOTO / Carroll County Times

My favorite photo of all was taken by the Carroll County Times.  Zack’s school sent the entire second grade to cheer for him.  I absolutely love this photo.  It makes me smile.

I hope you enjoyed the pictures.  I also hope these pictures make you want to head out to the Special Olympics next year.  Whether you volunteer to help with the event or come out and cheer for your favorite athlete, I promise you will leave with a smile on your face!

Hug your babies!

~ Dawn

Special Olympics 2016 – Part 1

Before I post a zillion pictures of Zack’s awesome Special Olympics day, I wanted to share a few things that I have been struggling with of late.  As you know, Zack has been a bit behind developmentally since birth.  All along his doctors have assured us he would eventually catch up.  I have always been concerned about this and wondered how they could be certain this would happen.  I tried to shake off the unease I felt whenever we were told this and told myself to be more positive.  I wanted it to be true more than anything.

Over the past few weeks, we have been getting some discouraging reports from school. Zack is now even farther behind despite being in school more consistently.  He is having trouble remembering things he learned last year and even more trouble retaining what he is working on this year.

I had a meeting with Zack’s teacher’s on Wednesday morning before the Special Olympics to address some of our concerns.  We received an email outlining the things they are seeing at school on Friday (I asked if they could write things down for us).  My heart has been heavy all weekend as I worked to process this new information.

Jim and I have been in touch with Zack’s Developmental Pediatrician.  She is paying close attention to what is going on with our boy and has recommended a full evaluation by a neuropsychologist at the Kennedy Krieger Institute.  This evaluation will be several hours long and include extensive IQ testing.  We are hoping to get a better sense of what exactly is happening.

My husband is forever the optimist.  He has pointed out that while some of the things we were told are certainly true, there are other things that are positive.  Zack is slowly improving in reading.  Zack is pretty amazing on his computer.  Most importantly, Zack is our son.  No matter what we discover, good or bad, we will continue to advocate for him and work to help him in every way.

OK, enough of the yuck.  Now for the good stuff.  Zack is doing well medically.  He is gaining weight.  His sodium level was amazing last week.  His stoma is not prolapsing.  I am thankful that his medical situation is finally quieting down.  Is it crazy that going three months without a medical issue is quieting down?  It gives us more energy to focus on his current learning situation.

I know you are wondering why I titled this post Special Olympics 2016 when I have not even begun to tell you about Zack’s day.  I honestly did not think I had so much to say. Sometimes writing it down helps me process my thoughts and feelings and I guess I needed to do that today.  I will not keep you waiting for the cuteness any longer.  Here are a few highlights of Zack’s day in pictures.  You are welcome.


Being greeted by cheering fans as he arrived at the stadium.


Zack and his PE teacher/Special Olympics coach.


Taking in the opening ceremony.


The tennis ball throw.


Look at that follow through!

My blog is not liking my pictures tonight and Zack and I have an early morning tomorrow.  I think I will end Part 1 of Zack’s awesome day here.  More cuteness tomorrow and no sadness.  I promise!

Hug your babies!

~ Dawn

Just A Normal Kid

Today is Monday.  Every Monday we head to the hospital so that Zack can have labs drawn and work on some other things.  We leave our house at 5:45 which is brutal for Zack and for me.  At our last visit, Zack’s sodium levels were doing so well that we were allowed to miss a week.  We still had to drive in last week for another appointment, but we got a week off of labs.

This week both Zack’s doctor and main nurse were out which meant our routine was off.  We usually arrive and take his urine sample to the lab in a STAT bag so that by the time he finishes his first appointment those results are back.  Today the lab said they could not find his urine.  Interesting.  Zack produced another sample and we headed down to the lab to see what had happened to the first sample.  Because Zack’s regular nurse was out, the orders for his labs were not in the computer.  The technician who received it could not find the orders, so he placed the sample in the refrigerator. That would not have been bad but, unfortunately, he forgot to tell the other people in the lab it was there.

Two and a half hours later, the results were in and showed his urine sodium was low again. The actual number was 11.  Below 10 is undetectable and what we are trying to avoid.  That meant Zack got to have another blood draw.  Not many of the nurses in the clinic do PICC-line blood draws, but one of our favorite nurses does.  That made Zack (and me) pretty happy.  Zack also sweet talked her into changing his PICC dressing since he had been waiting so long and did not want to waste his precious after school time getting it done at home with his home nurse.

Because his level was down we “get” to go back again next week.  It is not too terrible, though.  We enjoy seeing all of our friends at the hospital.  Zack likes giving all of his nurses hugs and I like talking to them and learning all about their lives.

After all of the delays today, Zack only made it to the last hour of school.  He was not too disappointed because that hour included music class and PE.  Zack loves PE and is so happy that he is allowed to participate once again.

Zack has been dreaming of the day when we would finally allow him to participate in “real” sports.  Last summer he had tennis lessons but missed a LOT because he had surgery unexpectedly.  Zack has had swim lessons but had to stop due to prolapsing and surgery.  Do you see a theme?

Last week his good friend asked him if he would like to go to Buddy Day at his karate school.  We knew there would not be any physical contact involved, so we figured his PICC-line and stoma would be safe. Since we knew it would be safer than running around the neighborhood like a maniac, Jim and I decided to let him try it out.

Zack was grinning ear-to-ear the entire forty minutes of class. He LOVED it!  Who cares that he had trouble staying focused and stood on his head?  He never had the chance to play T-ball or soccer and everyone knows that kids spend plenty of time doing that or picking flowers or looking at the clouds during those sports.  Who cares that he had trouble moving his body the correct way?  He was so excited to be learning karate.  While I do not have the words to capture his enthusiasm, I do have pictures – taken through a glass window on my blurry phone.


A glimpse of Zack’s smile!


I think they were working on their reflexes.


While we do not know if we will actually sign Zack up for karate, tonight was awesome. Zack thinks having a uniform would be cool.  (He was disappointed when he learned he did not need one for tennis.)  We still need to run it by his doctor and talk to the school to see how comfortable they would be having a child with a PICC-line, an ostomy, and a g-tube in class or if it would even be possible.  We know there is no contact or sparring at the lower belts but even so…we need to give it more thought.

Even if Zack does not join karate YET, watching him be a participate in a sport was fun. Seeing him participate in a normal childhood activity was exciting.  His smile was contagious and he was so happy.  I am looking forward to more days like this!

~ Dawn

A Movie That Hits Close To Home

Lately, many of my friends have been asking me if I have seen the movie, Miracles From Heaven.  You can watch the movie trailer here.  I have been told by many that they thought of our family when watching the movie.  I began to think that I should probably see the movie myself.  It wasn’t until after Zack’s surgeon asked if I had seen the movie that I decided to be brave and actually watch it.

The movie was about a little girl named Anna Beam who suffered from an unknown intestinal issue.  It chronicled her family’s struggle to find a diagnosis and a doctor who could help her.   It was also about her mother wrestling with her faith as she watched her little girl in pain.  The movie followed the family through hospitalizations and surgery and through a tragic accident that left Anna cured – thus the miracle part.

I have to admit that some scenes were pretty tough to watch as they were incredibly similar to our experiences.  Small bowel obstructions, NG tubes, feeding tubes, painful nights, vomiting, loads of medications, and feeling helpless are all things that we have gone through.  Happily for our family, all of our doctors knew something was wrong with Zack, they just did not know exactly what was (and still is) causing his issues.  We did not have to fight to prove that he was sick.  I cannot even imagine how hard that would be.

This movie caused me to take a look back on Zack’s journey.  On days when Zack feels well, the past few years do not seem too awful.  I kind of think of it like labor…your mind blissfully lets you forget the pain….until the next time you feel that first contraction and then the memories come flooding back.  This movie was like the first contraction.  It brought back all of the feelings and memories and reminded me of all the things we are still doing.

In the beginning of the movie, Anna was shown with a distended belly.  She was in pain all of the time.  That was very similar to Zack.  Here is a picture of Zack and his big belly before he was diverted with the initial ileostomy.  He looked like this most days, although his face was much cuter, he didn’t have a rash and he was in focus. …..I know, not the best picture, but it illustrates my point.


Zack when his belly first started getting distended.


While I remember this time in his life, I tend to forget how we could hear his stomach sloshing when he moved.  I forget how he needed his belly rubbed all of the time.  I forget how inactive he was and how much pain he had.  Obviously, I am remembering now.  I am so grateful that Zack’s doctor recommended he have an ileostomy!

That’s where the movie and Zack’s story differ.  Anna had a disease called Chronic Intestinal Pseudo-obstruction.  Over the past few years we have discussed this disease as a possibility for Zack with his doctors.  One of the reasons it is not suspected for Zack is because pseudo-obstruction usually affects the motility of the small intestine.  Zack’s motility issues are in his large intestine.  So while many of the symptoms Zack has when his colon is connected are similar, it is not likely that he has this disease.  I am grateful as the disease does not have a cure.  Of course, his small intestine has other issues that nobody can figure out, but that is another story.

While Zack is doing really well right now and I am hopeful we are on a good path, it is easy to forget that he was a pretty sick guy in January, he had surgery in December, had testing in November, had testing in August, had emergency surgery in July, surgery in March and was super sick before that while he was reconnected.  We still do not have any answers as to why his colon works some of the time and not others.  We still do not know why his ileostomy has such high output and loses so much sodium.  We do not know why his stoma prolapses. Just like the parents in the movie, we are often frustrated by Zack’s illness.

Another reason why I have been so interested in this movie is that the doctor who finally helped the Beam family works at Boston Children’s Hospital.  Zack’s colorectal surgeon at Cincinnati Children’s Hospital will begin working at Boston Children’s in June. She will be working closely with the doctor from the movie and she is going to have him take a look at Zack’s case.  While Jim and I are completely happy with all of Zack’s doctors and the care they give Zack, having another expert take a look at everything with fresh eyes is an unexpected bonus.  Not to mention the fact that we have great friends in Boston that we will get to see when we visit his surgeon.  That makes me happy!

Another part of the movie that moved me was a scene where the mom had all of the medications Anna took scheduled out on a white board.  I do not do that, but I do keep a journal indicating what Zack eats daily, what he drinks daily, how much formula we give him and how much output he has daily.

Just to give you a glimpse into his daily regimen.  We administer sodium chloride pills three times a day (for a total of 7 pills) to help keep his sodium levels up.   Zack gets CeraLyte, an electrolyte replacement, four times a day through his g-tube as another line of defense for his low sodium levels.  On really high output days we give him a rescue dose of CeraLyte in his nightly formula.  We give Zack Immodium pills three times a day to help slow down his output.   If his output is really high we give him four pills a day.  He takes an ADHD medicine in the morning.  Zack gets formula through his g-tube at night to help keep his weight up.  We flush his PICC-line with saline and heparin twice daily. We give Motrin and Tylenol for pain most days. And finally, we change ostomy wafers and bags pretty much daily.  That sounds like a lot and it is, but we have just made it part of our routine.  It is just what we have to do to keep Zack healthy.  There are days where it seems like a lot and I feel tired but, for the most part, it is not too bad.

I am glad that I watched Miracles From Heaven.  I am glad that I have had a chance to think about all that we have done with Zack.  This movie made me think about my faith and how there are times when I just do not understand why God chose our family to walk this path.  I question what on earth all of this is about.  I look forward to talking to God one day and finding out how He used this for His glory, because I truly believe He does.  But through the questioning, I am able to see some of the good that has come through this time.  I see the people he has placed in our lives who encourage us and help us.  I see my child happy when he has so many reasons not to be.  I see new friends He has given us with children who are also chronically ill and the support we give one another.

Some of my favorite verses in this season of our lives come from 2 Corinthians 12 verses 8-10.  Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.  And that, my friends, is how we walk through this crazy life of ours.


Now, I realize that I should have just stopped writing after the last paragraph…but it is April Fool’s Day and I had such fun tricking my kids today.  I made pound cake sandwiches with frosting that looked like cheese and fooled Zack into thinking it was grilled cheese.  It was awesome and also a bit mean since he never gets to eat cheese.  I bet you wish I was your mom.  But my favorite prank was showing Drew and Jake the photo below.

IMG_5586 (1)

It is really just a picture of Zack’s bladder, but I think I made their hearts stop for a minute.  It is the moments like these that make life pretty amazing.

Hug your babies!

~ Dawn