Rare Disease Day

It’s Rare Disease Day.¬† You may be wondering what the heck that means.¬† What is the purpose of Rare Disease Day?¬† According to rarediseaseday.org:

Rare Disease Day takes place on¬†the last day of February each year.¬†The main objective of Rare Disease Day is to¬†raise awareness¬†amongst the general public and decision-makers about¬†rare diseases and their impact on patients’ lives.The campaign targets primarily the general public¬†and also seeks to raise awareness amongst policy makers, public authorities, industry¬†representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.”

In honor of the day, Zack decided he wanted to paint his face like many other people with rare diseases are doing.  He is hoping that his friends will ask him what his face paint is for so that he can explain rare disease day to them.  He wants his classmates to know that rare diseases affect a lot of people.  In fact, 1 in 20 people will live with a rare disease at some point in their lives. He wants them to know that there are many different types of rare diseases, many go undiagnosed (Zack), and many have no cures.  If you live near us and see Zack today, be sure to ask him about his face!  Just look at that cuteness:

I hope that seeing Zack will inspire you to read about rare diseases here. Chances are you know someone besides Z with a rare disease.  Maybe this will give you a better understanding of how families like ours live.

I am finding it hard to find a way to segue into my next topic.  Please forgive me.  My brain is tired.

Zack is currently doing about the same medically, although these past few days have been a bit challenging.¬† His belly is currently distended and painful.¬† He is able to eat and go to school and play, so it is not a medical emergency.¬† However, his stomach is noticeably bigger and his output is noticeably lower.¬† I spoke via text with his doctor for our monthly Z update and told him my concerns.¬† He agreed with my suspicion that Zack is probably having an intermittent partial bowel obstruction.¬† This is not new for Zack, sadly. My concern is that partial bowel obstructions can lead to complete bowel obstructions. Jim and I feel confident that he is doing okay for now.¬† My mama radar is definitely on alert, but at a low level.¬† I’m hoping it stays that way.

Speaking with Zack’s doctor is always reassuring and having him agree with my (our) assessment helps ease my anxiety. I wish it could help Zack feel better as well…but I will take what I can get. Zack’s doctor reminded me that given his surgical history, we do not really want to mess with him – unless it becomes worse.¬† Jim and I totally agree. The lesson here?¬† Go out immediately and buy stock in Tylenol and Motrin.¬† We are single handedly increasing their value.¬† You are welcome for the tip.

In addition to his belly, Zack is continuing to have a hard year in school.  His ADHD medication continues to be an issue.  Between the Quillivant debacle and trying to appropriately dose his new medication, his ability to focus has been severely affected. He is struggling in many areas, but especially in math.  We had an IEP meeting today to discuss many things.  Hopefully we have come up with some new ideas of ways to help Zack be successful in school.  Watching him struggle is hard and frustrating and exhausting.  Jim and I continue to advocate for him and appreciate all of the ways his school is trying to help him.

Although all of these things are challenging for Zack, he continues to meet each day with a smile.  I am constantly amazed by that and grateful to be his mom.

Hug your babies,

~ Dawn



Sickness, Graduation, Fun and Waiting

What a whirlwind this past week has been! Let me start at the beginning.

One week ago, Zachary’s ostomy went crazy in the output department.¬† A normal ileostomy should produce between 300-500 ml of output a day.¬† Zack has never fit into that category.¬† His output usually averages about 1,000 ml out per day.¬† Last Sunday, for no apparent reason, Zack’s ileostomy had 2,650 ml out and our boy was illin’…..a word meaning feeling pretty darn sick.¬† Previous to this, Zack’s highest recorded output was 2,300 ml while he was in the PICU.

Zachary was so sick that HE asked to be taken to the hospital for an IV.  Yeah.  He never asks to go to the hospital and asking for an IV?  Well, that has only happened one time before three years ago when he had a small bowel obstruction.  Obviously, I wanted to take him to the hospital right away.  Jim, being the man of reason in this situation, thought we should wait a bit and try to manage at home.  I agreed, with the stipulation that we text his doctor.  His doctor advised us to have a low threshold for taking him in, to bring him in for labs in the morning if we decided not to come in, and gave us instructions on how to rescue dose Zack with CeraLyte.

This is the part of my story where I sing the praises of Zack’s g-tube. His g-tube is a permanent tube that goes directly into his stomach and allows us to administer medications as well as formula.¬† The idea of a permanent feeding tube in Zack’s stomach took some getting used to, but now I cannot imagine his life without it.¬† I actually wish we would have gotten one sooner.¬† This little invention allows us to manage a lot of things at home that once would have landed Zack in the hospital. It is a wonderful invention and I am so very thankful that he has one.

Back to my story….later that evening our guy said that he really thought he should go to the hospital. Again, I was all for that.¬† Jim thought we should ask our friend, Sarah, to come take a look at Zack and take his vitals first.¬† His heart rate was elevated, but his blood pressure was OK-ish.¬†¬† Sarah advised that if we wanted to stay home we would need to check on him every few hours over night.¬† Jim really did not want to go to the hospital and have Zack admitted when he was OK-ish, so we stayed home and monitored Zack.

As much as I hate to admit it, that was probably the right call.¬† Zack was a bit more lively in the morning, but still not great.¬† Zachary’s lab work that morning showed that he was low in sodium and chloride and had signs of dehydration.¬† All of that WITH his g-tube.¬† Happily, his output slowed down and his doctor talked me off the ledge.¬† I was really not comfortable with how sick Zack had been the day before.¬† We were getting ready to head to Texas and I was worried about getting his sodium levels back up before our flight.¬† His doctor said that while IV fluids would bring his levels up in a much more controlled way (and quicker), being that his output was back to a reasonable level we could bring his levels back up at home with his CeraLyte.

Jim and I believed that Zack had a 24 hour bug and that he was fine.¬† We flew to Texas on Thursday and Zack was a dream on the plane.¬† He sat quietly and did not fidget.¬† That should have been our first clue that something was amiss.¬† We arrived in Houston to spend the night with family.¬† Zack spent the afternoon playing with his cousins and having a terrific time.¬† Overnight he developed a fever and woke burning up.¬† But he had output and we knew his belly was OK and we needed to get to Austin for Drew’s graduation at The University of Texas.

Texas cousins.  We call them M3 РMason, McCain and Morgan.

When we arrived in Austin, our boy was still burning up.¬† Not only that, his appetite was non-existent, his head hurt and his output was crazy.¬† When we are at home, Jim and I measure Zack’s output with a urinal.¬† I refuse to travel by plane with that nasty thing and we have gotten pretty good at estimating.¬† We knew his output was high, but we were prepared with the appropriate amount of CeraLyte.¬† Zack continued to have a pretty high fever for a bit over 48 hours.

The morning of graduation Zack woke moaning and really feeling bad.¬† Jim and I were concerned that we might need to take him in to be seen.¬† The second time in one week!¬† We dosed him with Motrin, had Jim’s brother and wife sit with him while we went to the Master’s Convocation in the morning (thanks David and Sylvia) and started looking into which hospitals were close to us.¬† We made a plan for what we were going to do when we got back to the hotel and who would miss the commencement ceremony that evening.

As luck would have it, one of Zack’s nurses from Walter Reed lives in Austin.¬† We were able to talk to him about what was happening with Zack and he told us which hospital would be best for Zack.¬† When we returned to the hotel, Zack was a bit perkier.¬† He still had a good fever, still was not feeling great, but no longer moaning.¬† His fever continued through the day and he did a lot of resting on me.¬† However, we decided with some Motrin and snuggles that we would chance graduation.¬† It was outdoors and we would not be infecting anyone with his germs.¬† Zack’s output was crazy again, but we continued with lots of CeraLyte and hoped things would calm down.

Can you see Zack under there?  He was freezing and had a headache and generally just felt bad.  This is how he spent most of graduation day.

On Sunday morning, Zack’s output was still high, but his fever was gone.¬† We started feeling much better about the situation.¬† We had a fun lunch visiting with Drew and Lindsey and our dear friend, Chris.¬† Chris was a nurse at Walter Reed and one of the best we know.¬† He took care of Zack at his sickest and we are forever grateful.¬† We were so excited to see him!¬† Zack had not eaten that day, but we knew he had formula overnight and were not too concerned.

Here he is at lunch with Chris.¬† He looks great, right?¬† Perfectly healthy.¬† Who knew….

After lunch, Zack wanted to be carried.¬† We had put a new wafer on before lunch and there was nothing in his bag.¬† Not one little drop. He said his belly was hurting.¬† All things which tell us things are not going well.¬† We went back to Drew’s school and walked around.¬† Every time we tried to have Zack walk, he sat down on the ground and said his belly hurt.¬† Still no output.¬† Jim and I once again started to be concerned.¬† How did this child go from so much output to absolutely nothing?¬† Was he obstructed?¬† We really think he was.¬† His behavior fit perfectly with an obstruction.¬† It took over 6 hours for his output to start back up.¬† Once it did, the flood gates opened and Zack was really hungry and his energy returned.

Yesterday it was time to fly back home.¬† Zack had a normal amount of output overnight.¬† His fever was gone.¬† However, he woke up congested and with bloodshot eyes and a headache.¬† Once we got one the plane, Zack’s output once again stopped.¬† Once again, in the late afternoon Zack perked up.¬† His output started back up and he was ready to go.¬† Until dinner..when he said he did not want to drink too much because his brain was telling him that his belly hurt.

We got home, had a shower, got into our own beds and Zack said he felt better.¬† He once again had a normal(ish) night.¬† There was a little output.¬† We were happy.¬† When he got up he seemed OK, so we decided to send him to school.¬† We knew he did not eat his normal breakfast.¬† He told us he was full.¬† However, he ran to the bus and told everyone he felt awesome.¬† And then the phone rang….it was the school nurse.¬† Zack had a belly ache and was asking for Tylenol.¬† She gave that to him and sent him on his way.¬† The phone rang again about thirty minutes later.¬† Zack was prolapsing a bit and still did not feel well and was acting unwell and even missed recess.¬† I brought him home and here we sit.

Jim and I believe that last Sunday was the beginning of whatever crazy is going on now.  When Zack gets sick, his ileostomy has higher than normal output. What has caused him not to have output these past few days is still a mystery.  It has happened before and we have attributed it to positional obstruction. It used to happen a lot during the school day.  But this is a bit different in that.  On Saturday, Zack was walking around one moment and then the next he was very unwell.  We are hoping that it is still related to his virus and not a physical obstruction.  There is nothing we can do about it at the moment besides wait and see.  If you know me at all, you know that this makes me crazier than normal.

The good news is that we are home and close to our normal doctors.¬† If anything happens, we feel much more comfortable with the care available here than in Texas where nobody knows his story.¬† Zack has said he will let me know if he needs to go to the hospital and Jim and I are on alert.¬† Still, the only thing we can really do is wait and see…..

As I wrap up this post, I want to share some pictures of a big event in the life of our family.¬† Drew graduated on Saturday with a Master of Aerospace Engineering degree from the University of Texas at Austin.¬† Even though Zack was sick, we were still able to enjoy the weekend celebrating Drew with family and friends.¬† Drew has worked extremely hard for many years pursuing his dream.¬† Jim and I are so proud of him and very thankful to everyone who has had a part in mentoring, teaching and loving our son.¬† I am also grateful that we were able learn about the great history behind the Longhorn traditions.¬† We have never seen such spectacular graduation ceremony before.¬† It was a mix of a parade, a concert and Disney fireworks and something I will always remember….and I finally learned the words to “The Eyes of Texas” and how to properly “Hook ‘Em!”

Before Commencement

Drew and his girlfriend, Lindsey.¬† Aren’t they cute?

After the Masters Convocation in the morning.

Last picture.¬† I promise.¬† This makes me happy because it was the moment we first saw Drew and Lindsey.¬† I think it captures how happy Drew was/is to be D.O.N.E. with school…for now…

Hug your babies!

~ Dawn

Learning about life on the playground…..

I debated with myself about this blog post.¬† Do I really want to write about this?¬† Do I want to tell people about the hard things that happen to my child?¬† Wouldn’t it be easier to just share medical stuff?

This past week several things have happened to my child that have left me sad.¬† Things that have made me want to shelter Zack forever from mean and scary things.¬† However, as his mom, it is my job to help him learn how to be confident in himself, take care of himself, stand up for himself and to be safe when he is not with me.¬† At the same time, it is my job to teach my child to be kind to others, to be a good friend to others, to see past differences and to see the good in the world.¬† All parents want that for their children….at least I hope they do.

Back to this week.¬† A few days ago we learned that a friend was telling others that Zack said something that was untrue.¬† I asked Zachary about it and he dissolved into tears.¬† First of all, he did not even understand what the words meant the child accused him of saying.¬† Secondly, he could not understand why a friend would say something that was untrue.¬† He came to the conclusion that the best decision would be to “break up with his friend for a while.”¬† I was proud of Zack for being able to reason through things and we were able to have a great talk about how a true friend behaves and what he can do to be a good friend in return.

Then we learned that on the playground at school there is a “secret” club of a handful of boys.¬† They decide who can and cannot be a member.¬† Guess who cannot be a member?¬† Guess who wanted to be a member?¬† Another parenting opportunity to discuss what being a good friend means.¬† We were able to talk about how bad it feels to be left out and the reasons having a club that excludes kids like that is not nice.¬† The second incident in one week that hurt Zack’s heart in a way he had not yet been hurt.¬† Is this why people home school?¬† I am just joking….mostly…. .

Yesterday, however, Zack was different.  Zack was with a friend in a supervised play area at a local gym when several other children did not want him to play.  They cornered him and began to kick him in the stomach (I know, right?  His stomach of all places).  They also tried to make him leave by pulling him by the leg and pushing him down. I am still not sure how on earth the adults in the play area did not see what was happening.  Happily, one of the boys who was with Zack was able to get help.  The boys were made to leave and their parents had to come get them.

This time Jim and I had an entirely different talk with Zack.  We discussed how nobody has the right to hurt him like that EVER.  We told him that in that case he is allowed to fight back to defend himself. We asked him if he thought about the things he learned in karate class, but I guess in the moment he was just really scared.  We totally understand that.

Jim and I were pretty upset by the entire situation for many reasons.¬† I am not going to list them all here.¬† We are really thankful that Zack’s stoma and g-tube were not damaged.¬† Zack has no limitations for normal play, so there is no reason why a supervised play area would be off-limits to him. We are really thankful for the mom of the friend Zack was with for taking such good care of him when the gym informed her of the situation.

As a mom of any child, situations like these would upset me.¬† As a mom of a child with special needs, I feel even more upset.¬† As wonderful as I think Zack is, I am not dumb.¬† I realize he is different from other children his age.¬† I can see it.¬† I know that in life often the weakest ones are picked on the most.¬† I do not like that, but I understand that it happens.¬† Jim and I will continue to do our best as Zack’s parents to help him learn to navigate this big world of ours. We will continue to teach him that you do not have to like everyone or play with everyone, but you do have to be kind.¬† We will continue to teach him that though there are some people who mean, most of the people you meet will be nice. We will continue to teach him how to be a good friend.¬† Hopefully, other parents will do the same……

I’ll leave you with this video from the 2017 Pro Bowl.¬† It fits with what is in my heart right now.¬† What an example we can set for our children if we choose to love.¬† Love those who are difficult.¬† Love those who are different than you.¬† Love your neighbor………BE KIND!

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 Р 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

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

Zack’s New Plan

Now that we are back home and getting used to being in a routine again, I finally have time to update this site. ¬†Zack was very excited to come home and giggled when he climbed into his bed. ¬†He said he missed his pillows and his cozy sheets. ¬†I felt the same exact way. ¬†To make our first night home even better, Zack slept through the night for the first time in months. ¬†I am pretty sure I heard rejoicing in the heavens…or that just might have been me.

While Zack was in the hospital, the doctors told us that it was time to start looking at some more obscure things. ¬†I guess doctors have a saying that goes something like, “Don’t go looking for zebras.” ¬†Meaning, don’t go looking for a complicated illness when a more common one is most likely. ¬†The attending pediatrician on service this past week is a GI as well. ¬†We have known him since 2013 and have great respect for him. ¬†During rounds he told us that it is time to start treating Zack like an albino zebra. He said that Zack has been “medically brittle” for a long time and on the brink of disaster for months. ¬†It is time to start digging deeper to see if we can come up with some reasons for Zack’s super high output and sodium losses.


Big brother helping Zack be brave for his PICC dressing change.

Walter Reed and Cincinnati shared testing information so that we do not have to repeat a bunch of tests. ¬†The doctors here came up with some new things they would like to investigate. ¬†One thing they are considering is the possibility that Zack’s intestines are not processing sugars correctly. ¬†This is all new to me, so it is quite possible that I am getting things wrong here. ¬†They want to make sure his pancreas is functioning well and a few other things. ¬†They said many things. ¬†My brain was tired. ¬†I cannot remember it all. ¬†I need a secretary.

One of their plans was to have Zack undergo another endoscopy while he was in the hospital. ¬†Sadly, he had a pretty good cough and anesthesia is never a good idea when you have a cough. ¬†We will schedule that in the next few weeks. ¬†During the scope they will take tissue samples from a variety of places. ¬†I know they will be looking closely at the villi¬†to see how certain enzymes are being processed. ¬†They want to magnify tissue to many times greater than a normal biopsy to see the arrangement of cells. ¬†They also talked about getting something from his bile ducts. ¬†Again, I need a secretary. ¬†If I come back in a few weeks and write something completely different, you can assume I had this wrong…but I am fairly confident at least some of it is correct.


Zack’s high output also causes him to lose a lot of sodium. ¬†I always knew low sodium (hyponatremia) could be an issue, but I did not realize just how dangerous it can be. ¬†Because Z’s levels have been low for so long, we spent a lot of time in the hospital getting his levels back to normal. ¬†In an effort to keep them normal and prevent such big fluid losses, his doctors have suggested putting him on CeraLyte¬†70 as his primary form of liquid during the day. ¬†CeraLyte is a oral hydration therapy¬†and comes in several different strengths. ¬†In addition to using CeraLyte 70 for daily hydration, they sent us home with “rescue doses” of CeraLyte 90 to give through his g-tube when his output is really high until we can get him in for labs. ¬†From their literature: ¬†CeraLyte 90¬†is for¬†severe diarrhea and dehydration–where fluid losses are high–such as in cholera or with short bowel or ileostomy. ¬†Who knew this was a thing? ¬†Why didn’t anyone know about it before? ¬†So many questions…

All of that sounded great when Zack was in the hospital. ¬†And then we came home and actually got the product. ¬†Our home health company could only send the natural flavor at first and let me tell you…it is not something you can sell to a kid as something fun to drink. ¬†While we can give it through his g-tube, Zack likes to drink and if he cannot have anything else all day it isn’t going to work. ¬†Actually, he can have 6 ounces of another liquid, but have you seen ever measured 6 ounces? ¬†I’m pretty sure we will have a mutiny on our hands. ¬†We will see his GI on Monday and talk about the plan and see if we can turn it into an executable one.


Zack and Aslan. ¬†Quite possibly the most awesome dog in the world. ¬†By the way…Zack is 49″ tall, so that is one big puppy!

The good news is that Zack’s sodium levels were all in the normal range when we left the hospital on Tuesday. ¬†That was the first time that has happened in months. ¬†He feels great and is back in school. ¬†Speaking of school, Zack received his new laptop today and, even better, they trained me on how to use it. ¬†I am pretty sure I needed the training more than Zack. ¬†He is so excited to have his own computer. ¬†He has already mastered the Kurzweil¬†reading program and is enjoying¬†The Lion, The Witch and The Wardrobe.


Trying out his new laptop.

As you can see, things are getting back to normal around here.  We are so grateful for all of the people who helped us get through the past two weeks.  To all of our awesome neighbors, thank you for helping Jim keep Zack stable and for transporting him to the hospital.  To all of our awesome hospital friends, thank you for taking such good care of Zack and of me.  To our friends and family, thank you for checking on us, visiting us and bringing us food.  You all rock!

Hug your babies!

~ Dawn

Two Weeks Later…..

A lot has happened in the last two weeks. ¬†We traveled home from the hospital, enjoyed Christmas, visited family, celebrated New Year’s Eve, Drew’s birthday, had a few doctor appointments and went back to school. ¬†Whew. ¬†So today when Zack was complaining that he was overdoing it and that his belly hurt and that he needed to come home from school, I thought he was just whining. ¬†I honestly thought surgery was more than three weeks ago, not just a bit more than two weeks ago. ¬†I left him at school with those big baby blues crying big ol’ crocodile tears. ¬†It was hard, but I knew he could do it. ¬†Nice, huh? ¬†I am not completely heartless, though. ¬†When he called later in the day, I did go and pick him up. ¬†I am pretty sure I’ll be winning awards.

A few pictures of the aforementioned things….




While we were in Cincinnati, Zack’s schedule at school was changed. ¬†Instead of having three separate special education teachers, he now has just one dedicated person working with him. ¬†The school hopes this will help Zack transition into “work mode” more quickly and allow for more actual instruction time. ¬†When three different people work with him (in addition to his classroom teacher), time is spent figuring out how he is doing health wise and what his mood is before settling into the actual work. This impacts the amount of instruction time he receives. ¬†It is also hoped that having just one person communicating his needs with his classroom teacher will help with planning for Zack. ¬†When there were three teachers involved the planning logistics were much more complicated.

I think this change probably played into Zack’s tears today. ¬†He usually loves school, but he also loves his schedule and his teachers. ¬†I am wondering if he was just a little bit sad and/or nervous about the changes going on and quite possibly still just feeling a little bit tired from all the healing going on in that little body of his.

With all of Zack’s absences AND his actual learning difficulties, he is just not closing the gap as much as we would like. ¬†Zack has a wonderful brain. ¬†He is a smart guy. He can tell you more about the human body than most kids and many adults. ¬†His vocabulary is impressive. ¬†However, reading is hard for him and that is a pretty important skill. ¬†Writing is physically exhausting for him. ¬†The school is working hard to help Zack catch up before third grade where things get even more intense.

We met with Zack’s administration yesterday to go over all of these things. ¬†I appreciate the time they took explaining it all to us. We also went to the hospital for Zack’s blood draw, met with his hospital social worker to work on medical trauma issues, had a PICC line dressing change here at home AND celebrated Drew’s birthday ¬†It was a pretty full day.

It was also one of those days where I realized that I am not Super¬†Woman. ¬†I made a mistake in his blood draw appointment ( I NEVER do that, seriously, NEVER). I cried during the meeting with his administration ( You know I HATE that). I almost forgot to wrap my child’s birthday presents (I LOVE celebrating birthdays) and I ended the day with a killer headache.

I had to stop and admit that sometimes life can be a little overwhelming. ¬†I had to admit that Zack does have a lot of different obstacles in his life and not just medical ones. ¬†I also had to admit that sometimes I try to minimize how hard things can be because I do not like people to feel sorry for me or for my family or most importantly for Zack…and truthfully most of the time life is pretty great. ¬†But there are moments when it sneaks up on me and the tears just come and there is not a darn thing I can do about it.

I also realized that every once in awhile I should probably share some of that because it is our reality and the reality of many other families with special needs children.  Even though this is true, it is also true that the special needs families in my life are also some of the strongest, most dedicated and resilient people I know.

I read an article on Facebook today, you know, the source of all true and inspirational things in life. ¬†Interestingly, the article is from a blog originally posted in August of 2013, but shared by two different friends today…coincidence? ¬†I think not. ¬†The article spoke to me. ¬†It was an article about prayer life, but it basically said instead of praying, “God, make it better” I should be praying, “God, make it count.” ¬†This is the life you have given me, make it count. ¬†Let me learn from hard things. ¬†Help me to teach my boys to learn from them as well. ¬†Let us learn to be strong through the hard things, do not let these experiences be wasted and, most importantly, make them count for Your glory. ¬†It was just what I needed to help me reset my thinking. ¬†If you want to read it for yourself, here is the link.

Going for a brisk (20 degree), endorphin producing, evening run with my Flying Feet buddies didn’t hurt either. Coming home to my four favorite guys, a warm house, a yummy dinner, a hot shower and soft cozy jammies was pretty great as well.

Hug your babies…and all of your people!

~ Dawn



A New Record

It is official. ¬†Zack has a new record. ¬†Today marks 10 weeks and 3 days since his last surgery. ¬†While that may not mean much to you, in our house this is a big deal. ¬†You see, Zack has not been incident free this long in over two years. ¬†Two Years! ¬†Cross your fingers, knock on wood or do whatever it is you do to keep the good luck going. Zack’s surgeon is worried that if I speak these words it will jinx us. ¬†Doctors are a curious bunch, but we love them just the same. ¬†I digress…The happy dancing may now commence!

While we are excited that Zack’s stoma is actually holding for now, we are in the middle of making plans to head back to Cincinnati in the next few weeks. ¬†There ¬†was an issue with Zack’s motility testing in August which made it incomplete and invalid. ¬†We were disappointed because that means Zack needs to have the test redone. ¬†That means another admission and another sedation and another yucky test. ¬†Z was not happy to hear that. ¬†His response made us laugh. ¬†He said that the doctors should have to take the test for him and have a tube in their bums. ¬†I guess that seems fair.

A few good things have come out of this new development.  Our doctors and surgeons were finally able to find a time to conference and come up with one unified plan for Zack.  Jim and I appreciate this immensely because, before this conference, each set of doctors had different ideas of what we should do next.  As parents, this was tough because we trust each of them completely, but they were not on the same page. The decisions we had to make were so big that we (I) felt a bit overwhelmed.  It is not easy to make hard decisions without feeling at peace about them. Now that they are all in agreement on the next steps, we feel much more confident in the way ahead.

While we wait to leave for Cincinnati, Zack has a lot of other things going on.  We are working hard with his dietitian and his GI doctor to get his g-tube feeds figured out.  Zack has started to gain back his weight now that he is actually getting enough calories each day.  Who knew?

Zack’s IEP team is working hard to get some much-needed testing accomplished. ¬†This would have been done last year if Zack’s medical condition would have allowed him to actually be in school for more than half the year.

His Developmental Pediatrician has been working hard to get Zack’s ADHD medication figured out to help him focus better at school. ¬†Both Z’s school and Developmental Pediatrician are working hard to get documentation together to help Zack qualify for assistive technology. ¬†In English, they are trying to get Zack a computer for school so that he can type his work rather than write it out by hand. ¬†While he “can” write legibly, it is a painfully slow and frustrating process (for Zack) which is unlikely to improve. ¬†We are hopeful that he will qualify for this soon and believe that it will be a great tool to help him be successful in school. ¬† Believe me, it is necessary!

We are now back to the waiting game. Waiting to see when we leave for Ohio. ¬†Waiting to see if Zack’s stoma continues to cooperate (fingers crossed). ¬†Waiting on school stuff. It may sound like a lot of waiting, but waiting means we are at home and home is good!

I leave you with Zack’s obligatory “First Day of Second Grade” picture. ¬†Most of the mothers I know have cute little signs for their children to hold on the first day of school indicating what grade they are in, how old they are, what they want to be when they grow up, etc. ¬†Not only are they cute and organized, they post these pictures on the actual first day of school. ¬†Yes, well…tomorrow is the fourth week of school. ¬†Zack is not holding a sign, BUT I took the picture on the first day and he is pretty cute. ¬†Does that count?


Since I am coming clean and confessing my good mom picture failure, you should know that this is my son Jake’s senior year. ¬†I have a really cute photo of Jake on his first day of kindergarten that I wanted to post next to his first day of twelfth-grade photo. ¬†Yeah, about that. ¬†Can’t find it. ¬†I’ve actually been looking. ¬†It is causing me much distress. ¬†Sigh. ¬†Here is his “First Last Day of School” photo.IMG_6018Whew. ¬†I am glad I got that off my mind. ¬†I hope I have not scarred them for life, at least not over this.

Hug your babies!

~ Dawn



Our week….

Time for a weekly update.  Things are good.  The end.


If only things were that simple. ¬†Things are indeed going fairly well. ¬†But, as usual, it’s complicated.

Zack’s wound opened up again this week. ¬†We sent a photo to our ostomy nurses and they wanted us to bring Zack in to be evaluated. ¬†We made a new plan, much like the old plan and will go back in next week to see how things look. ¬†Our surgeon had warned us that this area was weak and that we might have trouble with it. ¬†I believed him, but not really. ¬†Guess I’ll listen more to the man. ¬†He obviously has a clue.

For the past week, Zack’s stoma has been prolapsing a little bit. ¬†A prolapsing stoma sends shivers of fear through my body. ¬†Seriously. ¬†Happily, so far, he is only prolapsing about 2 1/2″. ¬†My anxiety level has been elevated and I keep waiting for more…

Because we have traveled this road before, I wanted to be proactive in our approach. ¬†I did not want to wait for an emergency to happen and then have to make hard decisions under pressure. Jim and I decided it would be a good idea to talk to Zack’s GI doctor now before we are in that position and formulate a game plan.

We are smack in the middle of that process now.  We have an appointment next week to go over some new information and to see what comes next.  I feel some more testing in our future.  Of utmost importance will be formulating a new plan for when Zack needs anesthesia next.  We do not want a repeat of last week!

Today we heard from the teacher Zack will have for summer school.  Happily, summer school is only an hour a day, three times a week in July.  So, though technically during the summer, it will not take the entire summer break away from Zack.  I am thankful Zack will be going as he is still struggling a bit in school.

Next week we also up his Ritalin dose to see if it will help Zack focus better in the afternoon. ¬†Since beginning Ritalin again he has lost some of his new found weight. ¬†Have I mentioned before how much I love Zack’s new g-tube? ¬†I love that we can give him more calories when he needs them. ¬†I love that he gets a more balanced diet this way than he would ever eat on his own. ¬†While I agree real food would be best, this is a kid who just does not eat and Ritalin does not help. ¬†It is nice to have one less thing to worry about.

Personally, this week was eye-opening for me.  I realized that I have been living in fear for far too long.  Fear and worry, about Zack and our other boys.  Fear about what the next thing will be for Zack.  Fear of more surgery.  Fear of more prolapsing.  Fear of more pain.  Fear of more fear.  It is pretty ridiculous.  Even though my faith is strong, sometimes my emotions take over and overwhelm me.  I do NOT like that.  I have resolved to change this and am working hard to make that happen.

Surprisingly, my new favorite song is by Nickleback. ¬†I have never really been a big fan, but their song, “What Are You Waiting For?” is the current cool down song in my Body Pump class at the Y. ¬†I have been listening to it for quite a few weeks now and it has grown on me.

It goes along with my current favorite Bible verse: ¬†“Have I not commanded, be strong and courageous. Do not be afraid or discouraged; for the LORD your God is with you where ever you go.” ¬†Joshua 1:9 ¬†Fear has no place in my life. ¬†It is just bringing me down, so time to kick it out! ¬†Or, maybe send in my favorite Jedi to wipe it out.


Hug your babies!

~ Dawn

Merry Christmas!

Merry Christmas!

I hope that you are all home with your families today enjoying this Christmas Day. Last year at this time, Zack was a pretty sick guy.  We are thankful to have him home and FULL of energy and excitement this year.  While we are thankful to have him feeling better this year, we are mindful of our friends who are not home.  We are praying for our friend Logan and his family today. Logan is spending his Christmas in the hospital fighting Neuroblastoma.  We hope next Christmas will find him healthy and strong.  Until then, we are praying for him every day.

Zack has been doing well. ¬†It feels amazing to write that! ¬†He has color in his cheeks, energy in his body and a smile on his face. ¬†Since having his NG tube placed, he has gained about 4 pounds. ¬†It could be more than that because nobody really knows how much of his pre-procedure weight was really poop. ¬†Seriously. ¬†We are still having some lingering pain and stooling issues which continue to frustrate us, but we are working on a plan to address that with Z’s doctor.

In other news, Zack is thrilled to be back in school. ¬†He just completed 2 1/2 weeks of being back for 1/2 of the day. ¬†He loves going to school and riding the bus. ¬†He says his favorite part of his school day is math. ¬†Hmmmm. ¬†Interesting. ¬†I’ll take that answer. ¬†I would have guessed P.E. or recess. ¬†What do I know?

On this Christmas Day, I thought I would take a moment to update you on life. Sometimes life throws things your way that you never expected. ¬†Being a parent should have clued me in….things are going to be hard. ¬†Jim and I are no different than any other family. ¬†I don’t know why I would expect to escape hard times.

I purposefully do not write much about our other kids. ¬†They are mostly grown and do not need their “stuff” broadcast. ¬†I did ask permission to write this much, however, and they graciously agreed. ¬†This year has brought some pretty hard things into our lives and some days have been really tough. ¬†Just because Zack has some serious health issues doesn’t mean our other kids don’t have serious problems as well. ¬†Our boys will try to handle things themselves not wanting to burden us. ¬†We can be tired and worried about Zack and not as in tune with our boys’ problems as we should be. ¬†I think it is a common problem for families with a child who requires lots of special care. ¬†While I do not plan to expand on that any more than this, I mention it today on Christmas because people often say to me, “I do not know how you do it!”

That statement is meant to be kind and uplifting, of course, but it assumes that I am somehow stronger than others.  When your child is sick, you do what you have to do.  There is no other way.  Our family is no different than any other family.  Our struggles  with Zack are more visible, while others are more private.

Even though my circumstances may not be what I would choose, my answer to that statement is simple. ¬†Faith. ¬†Without faith, life would be overwhelming to me. ¬†Sometimes it still is, but then I remember whose I am and that my strength does not come from myself. ¬†I love Carrie Underwood’s song, “Something in the Water.” ¬† I think it summarizes how I feel pretty well. ¬†AND the dancing is totally amazing, which is an added bonus. ¬†Come on, dancing in water? ¬†So cool.

Today we celebrate Christmas.  The birth of Jesus.  He is the reason I can be strong when life is hard.  Christmas is a great reminder to me:

“And now I’m changed

And now I’m stronger”

I am not going through life on my own. ¬†I am not strong on my own. ¬†I am strong because of Him. ¬†Some days I get it really wrong. ¬†Some days I am a real grinch and not at all the person I want to be. ¬†Some days my life does not reflect my faith, but guess what? ¬†I’m not perfect, just loved right where I am….and when I remember that I really am changed and I really can be stronger. ¬†Hopefully that is what people see in me…. most of the time.

I know that this time in my life will pass and hopefully, when all is said and done, I will be stronger, my family will be stronger and our faith will be stronger.  That will be a beautiful story.

Merry Christmas!

Penrod 2014 (1)

~ Dawn