Zack, Cap, and Life

Look at these two.  Can you believe the cuteness?  I like posting happy picture likes these on Instagram and Facebook.

A cute young man and his beloved pup, sitting together so nicely on a long car ride.  The pup looks adoringly at the young man. I’ve been instructed to call him this from now on. The young man telling his pup all about his new game….

But here is what the picture leaves out…This week was a tough week for both Zack and Cap.  Let’s begin with Zack.  Christmas vacation officially ended January 2 around here.  After almost two months without a prolapse, I received a call from school that Zack was prolapsing, there was blood and he had belly pain.  Belly pain is not surprising.  Anytime one’s intestines burst forth from one’s body there is bound to be pain.

While we do not know why Zack began prolapsing again, it is not really surprising.  The almost two month break is the real surprise.  Interestingly, this time his prolapse followed a day where Zack had over five hours of no output.  A new hypothesis of mine is that Zack’s belly issues are cyclical in nature.  I realize that I am not a doctor, or a nurse, or medically trained in any way at all.  Since everyone else is stumped, I figure that I have just as much of a chance at being right as they do, right?

For the rest of the week, Zack had periods of belly pain.  Over the course of forty-eight hours, we changed Z’s ostomy wafer and bag NINE times.  NINE!  We have heard of mythical people whose wafers last three to five days and we aspire to become like them.  Sadly, Zack’s have historically lasted for just one day.  On rare occasions they last two days and we celebrate.  Really.  Going through a few wafers a day happens more than we would like, but three wafers a day for three days is crazy even for us.

Over the course of those three days, we experienced some crazy things.  Zack’s bag fell off in Jake’s room on the carpet.  After extensive carpet cleaning this remains:

Try not to be jealous.  To be fair, Jake and Zack were in engaged in an energetic dance party.  We are pretty sure that Zack’s bag was accidentally knocked off in all the excitement.  We have lived in our house for six years now.  It was almost time for new carpet anyway.  Almost.

On Saturday night, Zack’s wafer exploded from too much output.  Exploded is misleading.  He had a significant amount of output.  The output ate through the glue that holds his wafer to his skin.  This has happens from time to time. To protect Z’s bed, we keep a plastic mattress cover under Zack’s mattress pad and sheets.

Until now, this has worked pretty well.  Sadly, we did not realize there was a tiny hole in the plastic.  When Zack’s bag exploded, there was over 600 milliliters of output in his bed.  We have no idea how long Zack slept in that mess before he woke up. Stool from an ileostomy is corrosive and can cause damage to the skin in a short amount of time.  Zack’s belly and back were a mess and painful for a day or so, but looking much better now.

Stool trapped under a plastic sheet on a mattress can cause damage to a mattress in a short amount of time as well.  I could add more details to the horror, but let me end this gross story by saying that Zack will be getting a new bed.  He is turning eleven in a few days and outgrowing his twin anyway…at least that is what I am telling myself to feel better about the bed carnage…do not remind me of the carpet…this is getting expensive!

Now, on to the furry one.  Over the past two weeks, this pup has overdosed on ADHD medicine.  He had his stomach pumped, got three doses of activated charcoal and spent the day in the hospital.  Upon returning home, this cute boy was urinating every ten minutes.  Seriously.  Turns out he had some kind of bacterial infection.  He is now finishing a course of antibiotics and doing a lot better, thankfully.

However, the morning of the bed disaster?  Once we got Zack and his room under control, we took Cap out of his kennel to go outside.  We got down the stairs, reached for the leash and that was all she wrote…his bladder was done.  All over the Turkish rug.  That we actually purchased in Turkey.  The one that you cannot just steam clean.  Good thing everyone loves this pup so much.

These pictures of Zack and Cap and their adorableness got me thinking about life and what we/I share with others.  It is easy to share happy pictures.  But everyone has their stuff, everyone.  Ours is chronic illness and an insanely curious puppy.  I love sharing our happy pictures with you, but I also like being real with people. That is one of the reasons I write this blog.  I guess my real update for the month is that we are doing our best to enjoy life.  Trying to find the humor among the literal poop that happens in our day and working hard to keep Zack stable.  Here’s to 2018.  May it be as kind to us as 2017 and may this be the year someone figures out Zack’s intestines.

Hug your babies!

~ Dawn

Doctor Visits, Puppy Updates, and Zack!

Hello Blogosphere!

It has been so long since I have updated that I feared I might have forgotten my password.  In reality, I have been struggling with if I want to continue to update this site while Zack is doing well.  It takes time and brain power and there is just so much one can talk about when life is humming along.  But then I remembered that the reason I started writing in the first place was not just because of Zack’s colon.  Rather, I started writing to share our experiences of working through life with a special needs child and everything that entails.  My hope was that someone might stumble across this blog and find something helpful in their own journey.  Zack’s colon just turned out to be an attention hog and shut out the other areas that make our life unique. Even though things are a bit calmer on the colon front at the moment, I still have things I want to share about navigating through this crazy special needs world.  So, for now, I have decided to type on…..

When I last posted at the end of September, Zack was getting ready to have some doctor appointments.  His first visit was to his Developmental Pediatrician.  Jim and I always have a lot of questions for this particular doctor.  I mean, she is the expert and we crave information. Information is power, right?  Except when there are no clear-cut answers.  Just like with his colon.  I just cannot let that be. It’s a character flaw I suppose.  Or just another way I am learning that in somethings only faith can give me peace.

At this particular visit, we discussed once again how Zack’s uniqueness is most likely linked to his chromosomal abnormality.  Because there are so many aspects of his body that work differently than his typically developing peers, this makes sense to us.  We also talked about the dreaded questions.  What will Zack’s life look like when he is no longer a child?  Will he be able to graduate from high school with a diploma or a certificate?  Will he be able to live independently?  Will he be able to handle bills?  Will he be able to have a family?  Support a family?  How do we plan for all of these different scenarios?

The answers to those questions are not ones I want to share here.  I do not believe in sharing predictions about my son’s future at the tender age of ten.  Rather, I want to allow him to grow on his own and let his body and brain (and God) decide how his story will play out.  But I am still a planner and a realist, so we talked about ways to help Zack develop into the best Zack he can be.  We discussed ways to help him become more independent and some important life skills that we need to work on in the next few years.  We talked about services that are available to families with kids who have special needs and how to apply for them.

One of those services is a grant program called LISS or Low Intensity Support Services.  This program provides funding to children with severe chronic disabilities, both developmental and physical, that are likely to continue indefinitely.  We were able to apply, but sadly were not chosen to receive the grant.  The selection process is completely random, by design, and occurs twice a year.  We plan to apply again in the spring and are crossing our fingers that we will eventually be selected.  The grant can be used for things like respite care (Oh, to dare to dream..), social skill opportunities (karate), medical equipment and other things.  We have been eligible for this grant all along and did not know it!  The important thing is we know about it now and that is why I am sharing it here.  Maybe someone else can benefit from this information as well.  It may just be a Maryland program.  I briefly researched this (like looked at one google search page) and could only find information about our state, but I’m betting other states have a similar program.

When Jim retired from the Air Force, we lost our respite care benefit.  We have wonderful health care overall.  I feel guilty even complaining about respite care.  However, Zack’s care is a bit tricky and not many people are comfortable caring for kids with ostomies and g-tubes.  Even family members who love our kiddo have to team up to help us as it can be overwhelming for one person to figure things out.  If we are lucky enough to eventually be selected for this grant, Jim and I might even be able to leave Zack for more than a few hours. Life goals…..

Zack also had a check-up with his GI doctor and things went really well.  Zack really likes going to Walter Reed and seeing his favorite doctors, nurses and social worker.  We learned that Zack’s weight has plateaued this year.  While that is not ideal, he has grown two inches in height which indicates he is doing better.  Jim and I are once again grateful for Zack’s g-tube as we can play with the amount of formula we give him overnight to encourage more weight gain.

While we were in with Zack’s doctor, a new GI fellow popped in to say hello.  Zack did not recognize her and, in true Z fashion, asked if we knew her.  It was a bit embarrassing, but she was very gracious.  She told Zack that she used to help take care of him on the ward as a resident and that he inspired her to go into Gastroenterology as her specialty.  I guess she really said that my pictures of his 9″ prolapses inspired her, but we will just go with Zack’s cuteness inspiring her.  Hearing that was such a blessing.  Knowing that Zack’s illness helped someone decide to want to help children like Zack… was very humbling.  Hopefully one day Zack will understand what that means as well.  Who knows, maybe she will be the one to finally figure his intestines out.

Several other great things came from our visit that day.  First, Zack was able to get his blood work done in the office with minimal fuss.  He was apprehensive and a bit uncooperative at first but, once he remembered that he would be rewarded for doing a good job, he held it together and even helped the nurse find his “good vein”.  This is a huge improvement and something we have been working on weekly at therapy for over a year.  Secondly, because we are managing so well at home we do not need to go back for 6 months!  Six months people!  I do not think this child has gone six months without being seen for GI issues since he was two years old!  It may even be longer than that!

November was a wonderful anomaly around here.  Zack did not prolapse once.  He did not have any obstructive episodes and needed minimal pain medicine.  This must be what “normal” ostomies are like.  It was delightful.  For the past two days, however, Zack is once again asking for Motrin and Tylenol for belly pain, not eating his breakfast or lunch and going back to his belly baseline.  Thankfully, the obstructive episodes and prolapses have not yet returned.  Fingers crossed….but we expect they will be back soon as well.

Now for the fun stuff.  Because Zack has managed to stay out of the hospital for quite some time now, we decided we needed a little more excitement in our lives and added a new family member.  I introduce to you, Captain Awesome Penrod, our new Golden Retriever puppy.

He’s a big, smushy, furry ball of love AND teeth.  Let’s not forget about those puppy teeth.  I hope that it is obvious that the small blonde one named the pup.  We could not talk him out of it and then the name just seemed to fit – both the dog and Zack.  We call him Cap and our vision for him is to train him to be a therapy dog and to one day be able to take him to visit children in the hospital.  Therapy dogs make/made such a difference for Zack and we would love to give back in that way.  He’s a pretty mellow pup, so we are hopeful.

We are also hopeful that Cap will help Zack with several things.  First, we hope that Cap will help Zack with his anxiety.  We have found a few people who are willing to help train Cap to recognize when Z’s anxiety is ramping up and to help calm him.  Of course, Cap will need to be much older than three months to start that training.  Second, we hope that Cap will be a good companion for Zack.  Third, we hope that our pup will help nurture Zack’s sense of responsibility as he learns to care for Cap.  No pressure, pup, but we expect great things from you!

In addition to the excitement of our new puppy, we also have a new celebrity in the house.  Zack made his TV debut tonight.  Take a look!

As the Christmas Season rapidly approaches and all of my cards are sent and all of my shopping is done (in my dreams), I am stuck by how lucky we are to be in this season of relative good health.  It has been a long road of illness for Zack and I am so incredibly thankful to have a Christmas where we can all relax and not worry about hospitals.

Although this year is a good one in our home, I cannot help but stop and think of some special friends that are struggling this year.  I think of our friend, Jim, who went to heaven just a few days ago after a long medical illness and his family who will have their first Christmas without him.  I think of our friend, Emmy, who just went through her second bone marrow transplant and is hoping to be able to be home for Christmas.  I think of our friend, Ryan, who is kicking cancer’s butt and just entered the land of ileostomies.  I think of my friend’s daughter whose family is trying so hard to find answers to her intestinal issues.  I think of our friend, Kayra, who lives in Turkey and has been sick for so very many years and just wants to be a little boy.  I think of my friend, Stephanie, who is missing her beautiful boy, Logan, as the one year anniversary of his passing is quickly approaching. I think of one of Zack’s doctors whose son passed away.  While Christmas is and should be a joyful remembrance of Jesus’ birth, my heart is heavy with prayers for my friends and I am reminded that, for some, Christmas can be a hard time of year.

Wherever this Christmas Season finds you, I hope that you will find the time to slow down and treasure all that is important to you and that you find time to hug your babies!.

~ Dawn

A Magical Summer

If you do not like pictures, you should probably skip this entire post.  Last summer, the Summer of 2016, was pretty great. We had our first family vacation in three years and Zack felt mostly well.  I was afraid to hope for another, but guess what?  The Summer of 2017 was a completely ordinary, normal, wonderful summer filled with new things and a few great trips to the beach.  That, my friends, deserves some documentation.  Proof that it actually happened, and pictures that we can look back on for years to come.  Of course, I realize I might be getting a little greedy actually expecting good things to happen around here…but I am good with that.

Before I share with you all of the fun thing we did this summer, here is Zack’s medical update.  He is the same.  Zack is still prolapsing a few times a month, his stoma is still swelling a lot, he still has times of constricted output, he is still craving salt, still not gaining weight (although he IS getting taller) and still having pain.  Zack’s GI doctor said this will probably be our new normal and, while not ideal, seems to be how things will be from here on out. Fingers crossed.  If you have been around us at all these past four years, you know that this is a vast improvement from the way things used to be.

Back to our summer.  This was the first summer that Zack did not have Summer School, at least not officially.  Zack and I spent a LOT of time reading, working on math and working on writing on his school computer.  Can you see the enthusiasm on his cute face?  At least we were outside on the deck?  Getting fresh air?  In the sun?

Zack also spent a lot of time in the pool this summer.  He took swimming lessons all summer and was very determined to finally learn how to swim.  By the end of August, Zack was able to jump off the diving board alone, swim under water like a fish, float a little on his back and tread water for a few seconds.  The one skill that just keeps eluding him is breathing while swimming.  It’s kind of a big deal in terms of independent swimming and being safe in the water….but… if he is in water that he can stand in, he is a fish.  He made great strides this summer and I have no doubt he will continue to progress.

In addition to school work and swimming, Zack spent time improving his tennis game.  His coach, Mr. Brecker, is an amazing teacher.  A bonus for us is that he used to be an Adaptive PE teacher.  He loves kids and is able to bring out the best in each player.  Last summer, Zack’s goal was to finally make contact with the ball.  This summer his goal was to learn to serve the ball. By the end of the summer, he was actually able to make contact when he served.  So what if it did not make it over the net? This was an amazing feat.  Being able to coordinate his body well enough to throw the ball up in the air, get his racket ready to hit the ball and then actually follow through took months of hard work.  I do not know who was more excited to see this finally come together — Mr. Brecker, Zack or me.  I do know we were all pretty darn proud of our blonde headed boy.  As luck would have it, we captured a serve on a video just for’s only 5 seconds long.

Another exciting first for Zack was visiting an actual police station.  Our neighbor, Travis Turner, is a police officer with the Howard County Police.  Zachary loves his police car, and Travis always takes time to talk to Zack about it when we walk by his house.  This summer, Travis invited Zack to come to his station for a tour.  This was not a little quick tour.  Zack got to learn about many different parts of the station.  Some of the things he saw included the Chief’s office; poked his head in the evidence room; saw how evidence was cataloged after hours; saw the gym; visited the crime lab and saw how fingerprints were taken, blood was identified on objects, how writing samples were analyzed and other fascinating CSI type things. Zack was also able to see some of the holding cells for both adult and juvenile offenders and decided that they were not very nice places.

I think Zack’s favorite thing of all was having Mr. Turner show him the police vehicles.  Zack was able to sit inside one, look at all of the controls in the car and have them explained to him, turn on the lights, turn on the different sirens and look in the trunk.  I think he was living out one of his dreams.  The Howard County Police were also very generous in giving Zack a backpack full of fun souvenirs to help remember this special day.  I know he will remember their kindness for a long time to come.

Zack and Mr. Turner

Zack’s dream come true!

Zack’s big brother, Drew, was home for a bit after hiking half of the Appalachian Trail.  We were able to go on a little vacation to Ocean City, Maryland where Drew buried Zack in the sand.  A huge deal for a kid who will not even walk barefoot on the beach.  We also played putt-putt golf, made sand castles, walked the boardwalk, and swam in the ocean.  We love the ocean!

Zack and Drew

Having a rocket scientist in the family made the Solar Eclipse very exciting for Zack.  Drew was able to explain what was happening to him in a way he understood and got him interested in our neighborhood eclipse watching party.  This is one of my favorite pictures of the day.

As if that was not enough fun for one summer, Zack also played in the rain, played kickball with the neighborhood kids, had lots of cousin time and just enjoyed life.  What more could a kid want (or a parent for that matter)?

Rain Fun at Ronnie’s!

Kickball popsicle break!

Cousin McCain came to visit.

Obligatory cousin photo.

And there you have it.  A full summer indeed.  School started a few weeks ago, but that is a topic for another day.  I’ll leave you with Zack’s first day of school photo.

I’m not an organized enough mom to have a sign stating what grade he is entering or to post on Facebook the first day of school, so this picture three weeks later will have to do.  Zack has several different doctor visits happening soon and I will post again after that.  Until then!

Hug your babies!

~ Dawn

Thrive Camp

Here in Maryland, summer traditionally means camp for kids.  Most of Zack’s friends attend day camps of some sort.  Zack has never attended anything more than a part day VBS and then only at our church where people are very aware of his needs and I am close by.  I am not aware of many camps (other than ostomy camp) where there is staff to help someone empty their ostomy bag, give medication, and to help change wafers.  Add in his learning disabilities and camp seems pretty out of reach.  I have been waiting for the day when Zack asks if he can go, but thankfully that day has not yet arrived.

Sometimes life gives you gifts you did not even know you needed.  A few weeks ago, we were delighted and excited to receive an email inviting Zack to a special camp at our new church called Thrive Camp.  Our church has a pretty amazing ministry for middle school, high school and young adults with special needs.  The younger kids are always welcome, but there is not a specific program just for them. Thrive Camp was developed just for this age group and included siblings as well.

Words can never convey just how wonderful this week was.  I was able to meet other moms like me.  I have lots of friends and almost all of them love my boy.  But only a very few understand life with a child with special needs.  I get that and do not expect others to be able to grasp our life.  However, making new friends who understand our challenges was like receiving a special gift.  I thought the camp was just what Zack needed.  Turns out, I needed it too!

The organizers of the camp thought of every little detail. Every dietary need was considered.  Every medical need was addressed and there was a nurse available at all times.  You know that made my day.  Not many people really want to deal with intestines…

Camp was run a bit like VBS in the morning with a fun field trip in the afternoon.  On the first day, the kids went to Meadow Creek Farm and Calm Acres.  This farm is run by a lady with the biggest heart for people of all ages with disabilities.  The kids had a picnic and hiked on a trail full of hidden wind chimes and swings.  The highlight of the afternoon, however, was being able to paint on actual horses.  In a million years I would never have thought to do that!  I am so glad that God made so many creative and compassionate people!  Check out these pictures.

Zack admiring the horse he helped to paint.

Come on!  How cool is that?

The next day, the kids went bowling in the afternoon.  Maybe it was all of those winters spent in cold climates like Montana and North Dakota that started our fascination with the sport, but all of my kids love to bowl.  Zack had so much fun and could not wait to tell me how he did not have to wear those uncomfortable bowling shoes, that he was able to use the ten pound ball and, most importantly, he was able to have pizza and a fountain drink of lemonade.  What more could a child ask for?

Friday saw the group headed to Spring Meadow Farm where they learned how soft serve ice-cream and Sno Balls were made.  In addition, there was a scavenger hunt, a petting zoo and the farmer let them plant their very own sunflowers.  Zack cannot have ice-cream because it makes his belly hurt like crazy.  While all of the other kids got to have ice-cream, the staff let Zack make his own Sno Ball with all of the orange syrup his heart desired.  I think he will be talking about using the machine to crush the ice for a long time!

On Saturday, a sweet family invited all of the campers and their families over for a BBQ and swimming.  It was a fun afternoon and Jim was able to connect with some of the dads.  That made me happy.

The hardest and best part of the week for me was watching Zack.  He was happy (best).  He was free to be exactly how God made him without his mama telling him to sit still, to look people in the eye when talking, or to change this behavior or to a more appropriate one (best).  Not being neurotypical, learning all the social cues in life is pretty exhausting and just being able to be himself and to be loved on just as he is brought such joy to my heart.  It was hard because I realized how many times we try to change his behavior to help him fit in (which is necessary at times) and how difficult that must be for him.  It’s like asking an introvert to behave like an extrovert.  They can act like that for a while, but it is very tiring.  It was also hard because I realized that he actually fit in really well at camp.  Let me explain….

For years people had been telling us that Zack would catch up.  That he would behave more like his peers naturally.  Obviously Jim and I realized that there was something different, but other than his chromosomal abnormality which nobody can really explain the significance of, his diagnosis has been elusive.  It was easy to buy into his differences being due to his years of being sick and not having the opportunity to learn the same social things as his peers.  That his ADHD would get under control and he would become more attentive like his peers.  That he would run and play naturally with his friends .  He’s ten years old now, and the differences are not going away.  Things are still hard for him. Although he will always tell you he is awesome, he is different from his peers.  Seeing Zack at camp with other kids who are not typical just reinforced the fact that he really belonged there.  It was a perfect fit.  He loved it and had so much fun. I am so glad that we were able to see this in a place that made him so happy.

Medically, Zack is the same.  He is prolapsing several times a month.  Recently he had a particularly painful one that kept him on the sofa for three hours.  Though it was super painful for him, it was a good reminder of how far we have come.  Currently, Zack only prolapses a few times a month (any prolapsing stinks if it is happening to you). There was a time when he prolapsed daily and was in constant pain.  While our preference would be that he not prolapse at all, 2-4 times a month is definitely better.  His stoma continues to be very swollen a lot of the time which also hurts.  In addition, he continues to have periods of obstructed output.  This past week he went seven and a half hours without a drop out.  He was crabby and irritable, but once his output started back up he was back to his happy self.  His output continues to be high.  Do I sound like a broken record?  I feel like one.  BUT no hospitalizations, so we are grateful.

I have so much more I could write about, but for some reason this post has taken forever to write.  I think I’ll save the rest for another day.  Until then, enjoy this last picture of Zack lovin’ camp!

Hug your babies!

~ Dawn

And Carie S. …….you are welcome…..





After my last post, Zack’s doctor and I decided that it would be best to have Zack seen in the clinic.  Over the past two weeks, we have avoided hospitalization three times.  I think I needed the visit for my mental health as much as Zack needed it for his physical health.  One of the things that is hard to understand about living with a child who is chronically ill is that they can be fine one minute and really sick the next.  As a parent, it can become tricky to navigate the areas between when he is not quite himself and when he is needs to be seen.  Trying to determine when to call the doctor, when to stay home and hoping you are not putting him in danger can be emotionally exhausting.  Fortunately for us, this year we have enjoyed a nice respite from the hospital.

At Zack’s visit with the doctor we decided that it was time for Zack to have some imaging done.  We had been discussing doing this for some time.  Given his crazy high output a week prior and three days in a row of limited output (along with a prolapse thrown in to make things even more fun) it was time to be checked.  We tried to get him into radiology that day, but they were completely booked.  That made me a bit sad because the best time to see what is happening is when he feels bad.

The next morning we headed back to Walter Reed for a small bowel follow through. This test requires drinking barium.  Barium is a nasty, chalky white substance that makes Zack literally gag.  After a few swallows and a couple of gagging episodes, we decided that we should try giving it to him through his g-tube.  Have I mentioned how much I love that thing?  Maybe once or twice?

Zack’s small bowel follow through was done using fluoroscopy.  Fluoroscopy allows the radiologist to see how the intestines are moving in real time.  Zack’s intestines moved the barium pretty quickly until a spot near the end.  Then it seemed as though the barium kind of pooled in one spot and took forever to go the last little bit up and out of his stoma.  Evidently this is normal and no issues were found.  That frustrated me, but I should not have been surprised.  Zack has had this test before.  At that time he was really sick and no issues were found.  Zack’s doctor had warned me the day before that we only had a 30% chance of finding something, but still I was hopeful.

The hardest part of the test was hearing Zack ask the radiologist if she had found the problem yet.  He really wanted them to find the reason his belly was hurting.  Zack’s doctor helped put things into perspective.  He said that, though frustrating, not seeing dilated loops of bowel or obvious areas of poorly functioning intestine decreases the likelihood of needing another surgery soon.  That is a good thing!

On Friday Zack was able to attend school.  He did ask for Tylenol for his belly, but otherwise had a seemingly normal day.  Friday night he had a great time playing in the neighborhood.  I’m attaching a video of one of the many reasons I love it here (it may take a few minutes to buffer).  All of the kids were playing lacrosse when this happened:

If this does not give you warm fuzzies about how great kids are today, then I do not know what will.  Thank you to Liam for sharing this video with me.

Saturday was fun as well with a Memorial Day gathering at a friend’s house.  Zack’s stoma was really big that day, but he was running around like a maniac and having such a good time.  Sunday came and he slept until 8:30 a.m.  I had to check and make sure I was not dreaming.  Zack’s output was really high again.  He had a good day, but was exhausted at bedtime.  Falling right to sleep is not a thing that happens often here and he was out before we said prayers.

Early Sunday morning at about 2:30 a.m. (my favorite time of day..) Zack came in to have his bag emptied and was asking for ice water.  When I emptied his bag and saw that he had 600 ml in it, I was a bit worried.  I got an extra dose of CeraLyte in him, gave him an extra Imodium and two sodium chloride pills.  Then he started complaining that his belly hurt and needed to be rubbed.  Soon he was asking for Motrin and just could not settle.  He was acting as though he was going to vomit and just generally freaking me out.  I finally got him to sleep about 3:30 in the morning, but I was not thrilled.

Zack and I had a quiet morning in the basement.  He beat me at MarioKart.  I am pretty sure he cheated…just kidding.  He also spent the morning licking salt from a bowl, eating sodium pills and drinking water….as kids do….right?

See that little bowl of white stuff?  That is salt.  He licks it like candy.  See that white pill?  That is sodium chloride.  He gets 7 a day, in addition to his CeraLyte, and is often still low sodium.  That’s a LOT of sodium!

Jim and I pumped him full of CeraLyte again to help bring his levels back up.  I tell you all of this to illustrate to you that while Zack is “fine”, something is not right.  The test may show that his intestines are not obstructed, but this weird high output, no output thing is unusual.  Do we need to go to the hospital? No.  Do we need to text his doctor? No.  Do we have to watch him?  Yes.  It is hard to relax when things are just not right.

People often remark that Zack looks great.  He does.  It is hard to believe he was not feeling well earlier when they see him running around like a maniac.  It is hard for Jim and I to believe at times as well.  But, that is how it goes with him.  Jim likes to say it will either get better or it won’t.  Profound, I know.  Today we are hoping that Zack will perk up and that the sun will come out so that we can go to the pool.  We have fun things planned for this day.  And that is what we do.  We try to live each day as if everything is alright.. until it isn’t.  Otherwise we might just go crazy.

Update to the update:

Zack did go to the pool.  It was freezing!  His buddies from our neighborhood were there and he was unusually quiet.  His cousin called and invited him to our local fair.  We went.  He had fun and went on rides, but was quiet.  Zack is not quiet.  Thankfully, last night was uneventful.  I sent him off to school today with a kiss and a hug and  fingers crossed that today will be a good day.

Zack and Tom at the fair.

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 – Mason, 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

Special Olympics/Update

One of my sisters lives in Egypt. She’s the “fun” aunt. You know, the one who never says no and lets you do all of the things your parents do not allow? (Sorry to all of Zack’s other aunts, but we all know it’s true). She travels the world and does all kinds of scary and exciting things. The one thing it is hard for her to do is to stay up-to-date with the incredibly fun things we do here. The other day we actually got to talk on the phone and she asked me why I had not been updating my blog. How is she supposed to stay in the loop when I put off posting? So, Carie, this post is for you!

After the weather caused a switch in dates, the highly anticipated day finally arrived! It was a beautiful, sunny and HOT day. Perfect conditions for the Special Olympics. Zachary was very excited and thrilled that his homeroom class was coming to cheer for him.

One of my favorite things about the Special Olympics is how hard the organizers try to make each and every kid feel important and well, special. Zack loves getting off the bus to cheering fans. He was met by Storm Troopers again this year and, being a ten year-old boy, that was pretty much a whole lot of awesome! Zack met his coach, Mr. Tozer, and off they went to get ready for the opening ceremonies. Just like the real Olympics, all of the athletes get to parade around the field, there is a color guard, the singing of the National Anthem and the saying the Special Olympics motto. If you have never read it before, today is your lucky day. Here is what it says:

“Let me win. But if I cannot win, let me be brave in the attempt.”

A fitting motto indeed. One of the things we have been trying to teach Zack is to try hard and be brave even when things are difficult. Anything that reinforces that makes us happy.

Zack and Mr. Tozer. Still working on that camera smile..

This year Zack participated in the 100 yard dash, the standing long jump and the tennis ball throw. His events were pretty spread out time wise, so in between he was able to run around with his class and just enjoy the day.

100 yard dash

Look at that effort!

A medal presented by a police officer. Heaven.

Because it was so very hot and because Zack ran around like a maniac, Zack’s body decided he was done. When he finished his last event he went over to his teacher and sat down in his zombie like way that gets his parents immediate attention. He was not following our conversation and wanted to go home. I was surprised at how fast that change occurred. He was running around like crazy one second and then on the ground the next with absolutely nothing left.

Jim and I carried him to the car and got some fluid in him. We had his rescue dose of CeraLyte with us, but forgot his g-tube extender and syringe (I mean…come on…how long have we been doing this and we still forget important things), so we did the best we could until we got home. He spent the rest of the afternoon inside, resting quietly. It was a good reminder that we need to be extra vigilant in hot weather.

The week after the Special Olympics was standardized testing time here. We decided to have Zack opt out of taking these particular tests because his IEP accommodations are not allowed to be used. It’s dumb. There, I said it. Jim and I could not see putting him through the frustration of all of that testing only to end up with a result that did not show his true abilities. Instead, Zack and I decided a little vacation was in order.

Our very kind and generous neighbors offered to let us stay at their beautiful beach house in Ocean City, Delaware. Zack and I went to see the wild horses on Assateague Island and had the beach to ourselves. We also went to the Boardwalk in Ocean City, Maryland where we had front row parking, ate pizza and ice cream and made a pretty amazing sand castle.

Now that is an ice cream and totally worth the belly ache!

It was a wonderful trip and Zack did not want to leave (neither did I). As we were getting ready to come home, Zack asked me to take a picture of us so that we would always remember how much fun we had. I’d say that our trip was a success!

Medically, Zack is still holding steady. His output is annoying. Super high many days and then randomly low. Consistently way above our target goal. His stoma made it through the month of April without a true prolapse. Woot! Currently, we are also having issues with his g-tube. It’s pretty painful and when we replaced it last night (we do this every 3 months), we had quite a hard time getting the old one out and the new one in place. I am a bit concerned there might be a bit of an infection brewing. Time will tell.

Finally, Zack and I had a talk the other night about belly pain. Zack told me (again) that his belly is still hurting everyday. I know it hurts often, but he does not always ask for pain medicine. In addition, Zack has been acting mostly fine and that makes me happy. However, when your ten year-old tells you that his belly hurts every single day, one should pay attention. I told him that we could tell his doctors about it and that they could probably help take his pain away. Here is his response. “Mom, I don’t want them to take all of my pain away! It’s how God made me and part of my body.” Yeah, I’m still pondering that one….

Hug your babies!

~ Dawn

Attitude Adjustment

Oh my gosh you guys!  I was totally having a pity party and throwing a mini temper tantrum yesterday.  You see, I was upset about some really petty, minor inconveniences in my life.  And boy do I mean upset.  My heart rate was up, my mood was foul, and I could not see past what was happening right that moment.  I even wrote an entire blog post about it.

What’s that?  You did not see the post?  That is because I decided to sleep on it before I published it.  Wow!  Am I ever glad I did.  What I realized when I read it again this morning was that I totally needed to get a grip and reset my attitude.  Jim and I often tell the boys that you cannot always change your situation, but you can change your attitude about it.  You get to decide how you view your day.  I am sure that Drew and Jake can attest to that.  I am also sure that they LOVED it when we said that to them.

One of the best ways for me to do that is to remember all of the good things that are happening right now alongside of the thing that upset me.  Instead of sharing all of the gory details of yesterday’s woes, I will instead be sharing some awesome things that are happening around here.

1. Zack went under general anesthesia last week to get six teeth pulled and he did not lose his mind.  He was able to be fairly calm and cooperative.  This was a gigantic improvement and a very encouraging sign that all of his anxiety therapy is beginning to work!

2.  Zack is still stable.  High output continues to plague us along with the occasional prolapse, but he is doing well and growing and we are managing well at home.

3.  Zachary “aced” his math test yesterday.  Not only did he get an A, it was on grade level and the same test his classmates took.  He gets intensive intervention at school and it is working!  His teachers deserve a lot of praise for the time they take with him daily.  Zack works really hard and we are so proud of his persistence, especially when things are hard.

4.  Zack was promoted to Orange Belt in Karate. He loves finally being able to be in a sport – especially one with such a cool uniform.

3.  Jake is having a terrific first year in college and will be an Orientation Advisor over the summer and a RA in the fall.  College life agrees with him.  It is exciting to see Jake thriving and happy!

4.  Drew is a few short weeks from completing his Master of Science degree in Aerospace Engineering.  He also just accepted a position with the Jet Propulsion Lab in California.  I still remember my sweet boy correcting his first grade teacher about the orbit of Venus….sigh.  Drew did all of the hard work, but Jim and I are pleased to have raised our first fully functioning adult.

5.  I have an incredibly hard working husband who loves our family.  He wanted me to write a smokin’ hot husband, but I did not want to gag you (or my older boys).  You are welcome.

Thinking about those things helped me reset my attitude.  There are many other great things happening, but my family makes me pretty happy.  That and a good night of almost uninterrupted sleep.  Zack is up to sleeping through the night about half of the time now.  Also an improvement.  Real sleep every night is still my goal in life.  I am much nicer when that happens….

I realize that this post is not my normal kind of post, but it is something I needed to write for myself.  I also realize that this sounds more like a Christmas Letter.  I will take that as a sign that this is more than long enough.

Hug your babies!

~ Dawn

One Year Ago

One year ago this weekend, I was in the hospital with a freak illness and Zack was home sick with a blizzard howling outside.  It was crazy and scary and I hope to never go through that again.  Happily our story has a good ending thanks to a great fire department, great neighbors, great doctors and great nurses.  It was also the last time Zack was hospitalized.  One year ago…..

One year without being hospitalized is something we had been dreaming about for three years.  We can hardly believe it.  So why am I not doing a happy dance?  Why do I still have a feeling of dread in the pit of my stomach more days than not?  Do I just need therapy?  Most probably.

Just for my own record, I have decided to log what went on this past year.  It is not a post full of new information.  Writing helps me process things and I want to get all of this down to see if it might help me figure out what this annoying sense of unease is all about.  Feel free to read on, but just remember that I told you….I am processing.

January – Zack was hospitalized with extremely low levels of sodium in his blood.  In fact, when he arrived at the hospital he was admitted straight into the PICU.  He spent ten days inpatient while the doctors tried to get his output and sodium levels under control.  We started giving Zack CeraLyte in hopes of keeping his sodium in check.  His output remained high with no explanation found.  Still had random belly pain.  He kept his PICC line from December.  In fact, our neighbor/doctor friend was convinced his PICC line saved his life over the blizzard.  Positive – Great neighbors, fire department, doctors and nurses.

February – Still in the hospital working on sodium.  Later in the month he had another endoscopy, colonoscopy, biopsies, pancreatic stimulation test and lots of blood tests for weird and unusual things.  During the scopes he had a new PICC line placed as his other one was accidentally pulled out of place during a dressing change.  The new PICC line caused him to have PVC’s because it was too close to his heart.  That was an easy fix the next day, but it still freaked us out a tiny bit.  We continued weekly visits to Walter Reed for blood sodium level checks.  Output remained high.  Belly pain continued.  Stoma was often enlarged. Positive – All of the tests for weird and unusual things came back negative.

March –  Continued with weekly/bi-weekly blood sodium and urine sodium checks.  Zack had a few weeks where his sodium level was decent.  Began stool refeeding trial through Zack’s mucous fistula.  It was not successful and resulted in lots of distention and pain.  Output remained high. Belly pain continued.  Stoma was often enlarged. Positive – We learned Zack’s colon was still unable to process stool.  More confirmation that his colon does not work.

April – Same as March, but sodium levels are low again.  Output still high.  Belly pain continued.  Zack often said he felt like he was going to prolapse again, but thankfully did not.  Stoma was often enlarged.  Positive – Zack participated in the Special Olympics and the entire second grade came to watch him!

May – PICC line removed.  Sodium levels checked via blood and urine sample and remained low.  Zack’s doctor felt we could manage things via urine checks alone.  He was concerned that the risk of a line infection was greater than the need for his PICC at this point.  High output and belly pain continued.  Swollen stoma. Positive – Our family was able to help the Nathan Chris Baker foundation with their fun run by handing out water at the halfway point.

June – Low sodium.  High output.  Belly pain.  Swollen stoma.  Periods of no output.  Positive – Spent lots of time swimming.

July – Low sodium. High output.  Swollen stoma.  Periods of no output.  Positive – Zack got to have a summer doing normal kid things for the first time in three years.

August – Went to Boston Children’s Hospital to follow up with Zack’s surgeon and to get a feel for her new hospital before we have an urgent need.  She works with one of the leading pediatric GI’s in the country and we met him as well.  We were hopeful that he might be able to make sense of Zack’s belly.  Theories were given.  Maybe a weird auto-immune thing.  Maybe eosinophilic ganglionitis.  In reality, nobody knows.  Boston really wanted his sodium and output better controlled and suggest adding Cholestyramine to his routine.  Sodium remained low, output high.  Belly pain and swollen stoma continued.  Periods of no output still occurred.  Positive – We took our first family vacation in three whole years!

September –  More of the same.  We met with Zack’s Walter Reed surgeon to catch him up on all that happened while he was deployed.  Start Cholestyramine.  Belly pain, high output and swollen stoma’s abound.  Still had periods of no output.  Positive – Zack was able to start karate (no sparring)!

October – Zack began to feel worse.  Periods of no output for 8-9 hours are happening with more frequency.  Stoma is getting very enlarged.  Belly pain increased.  Positive – Zack was able to walk the entire neighborhood this Halloween!

November – Zack was in pain often.  Stoma prolapsed twice.  Periods of no output with belly pain and then lots of output and relief occurred frequently.  Doctors decide that Cholestyramine was the culprit and causing intermittent obstruction.  Zack was taken off the drug and felt better right away.  Output still high.  Positive – Zack participated in the Turkey Trot at our local Y.

December – Met with Walter Reed GI. Zack gained weight.  Yay.  Sadly, not as much as the doctor would have liked.  Overnight formula feed was increased.  Zack’s doctor was waiting to hear from Boston about how to proceed with a steroid trial.  High output continued.  Doctor said we could stop urine samples and just assume that Zack’s levels are low.  His sodium has been low for several years.  Jim and I had been managing the levels pretty well with CeraLyte and sodium pills and know when Zack needs to be seen.  Positive – We were home for Christmas this year and not in the hospital.  We managed to keep a bottle of Tylenol in the house for more than a week.  Zack felt mostly well this month.  A true Christmas miracle!

January – High output.  Probably low sodium.  Belly pain.  Periods of no output.  This past week, Zack has prolapsed, had significant belly pain and stoma swelling.  His belly hurt so badly on his birthday that he asked me to let his doctor know his pain level.  I can only think of two other times that he has asked me to do that.  When questioned about how often his belly was hurting, Zack said his belly hurt on Mondays, Tuesdays, Wednesdays, Thursdays, Fridays, Saturdays and Sundays.  I guess that says a lot.  Positive – Drew and Zack’s joint family birthday party.

I realize now that I have answered my own questions and understand where my unease is coming from.  Zack still has unexplained medical issues.  Interspersed with periods of his usual yuck, he has periods of time where he seems to feel pretty good.  During those times I allow myself to think that we are past the worrying stage.  I think about how many months he has managed to stay out of the hospital.  I start to get excited about the possibility that we will be able to manage his life like this without anymore interventions.  And then he prolapses and has belly pain and periods of no output.  That old feeling of dread, which was almost gone, returns full force and causes me (and Jim) to wonder if we will be going back to the hospital, if he will need more surgery, if he will obstruct completely.

No wonder I cannot seem to shake this feeling.  Will it ever leave?  I hope so.  After this past week, however, I do not think that will happen for a little while longer.  Zack felt bad four out of seven days.  Even so, Zack has improved over the past year.  That is huge!  Baby steps are still steps. Tonight I will be grateful for that. Tomorrow I will work on trying to worry less….yeah, right…..

Happy New Year!Happy Birthday, Zack!

Hug your babies!



Good News

Zack had his appointment with his GI today at Walter Reed.  It was the first time we had seen him in person in awhile as Z is now in a place where we can manage a lot of things by text and phone.  How cool is that?  With all of the issues Zack has been having over the last month, it was time to have him checked out.

We talked about Zack’s prolapsing, obstructing, swollen stoma and lack of output.  For whatever reason, it seems as though Zack is one of those chosen few who do not tolerate Cholestyramine well.  I guess someone has to have those “rare side effects” listed on the medication printouts…why not Zack?  We talked about some of the ways the medication may have been causing him to intermittently obstruct.  The good news is that since discontinuing the medication, Zack is feeling a lot better.  His doctor did not have another medication to try at this time.  Although having high output and low sodium is not ideal, we have a system in place for watching it and for trying to keep on top of replacing his losses.  We know how to tell if he is not doing well and when to take him in to be seen.  We have done it for three years, so we will just keep on making it work.

Zack’s weight was still a bit lower than what his doctor would like.  He is up to fifty-four pounds which sounds like a whole lot to me.  His doctor told me that Z did not gain weight between the ages of eight and nine.  That is not really surprising when I think about all the hospitalizations he had during that time.  This year he has gained weight, but not at the rate he would like to see. Beginning tonight we will increase the amount of his overnight feeds and hopefully that will do the trick.

Today was supposed to be a blood draw day for Zack.  He has been working hard with the therapist he sees for Medical Trauma Therapy to get ready for this big day.  They have progressed from talking about blood draws, to watching videos, to simulating the event with an empty syringe and tourniquet.  Zack told his therapist on Monday that he was not at all afraid and that it would be “a piece of cake.”  He decided a bottle of Gatorade would be an appropriate reward for being brave and requested his favorite nurses do the testing.  You will just have to believe me when I say this is a HUGE improvement and that I was very proud of him.

Imagine our surprise when his doctor said that Zack looked so good today that he did not feel that he needed any labs!  While I am always glad to hear that, I almost wish Zack would have gotten labs today so that HE knew he could do it.  Almost.  Have no fear, he still got his beloved Gatorade!

On our way out of the hospital we were able to see a few special friends.  It always makes Zack’s day (and mine) to say hello, especially as an outpatient!  To make a great visit even better, one of Z’s favorite nurses had a special gift for him.  He was so excited he could barely stand it and could not wait to get home to build it.  Here it is:

img_6465Once again, things are looking up around here.  We will be home for Christmas this year with no planned procedures or surgeries.  Zack’s big brothers will be coming home from college soon and we are looking forward to a quiet December.  Fingers crossed!!

Hug your babies!

~ Dawn