Gastroenteritis Part Deux

Shortly after writing my last post, Zack’s GI called and we decided it was time for him to be admitted. Jim and I do a pretty good job of keeping Zack safe here. However, the sheer volume of poop coming out of his ostomy was making everyone nervous. Total output by the end of the day was 3,995 ml bringing his total output over three days up to THREE GALLONS! This is what three gallons looks like:

That is a lot of poop. We suspected Zack’s sodium levels were lower than Tuesday’s Emergency Room visit and that was indeed the case. I was disappointed, because I thought that by getting fluids and correcting his electrolyte irregularities on Tuesday, we had “tanked” Zack up and that it would last for a few days. I was wrong. I learned that just because he was given fluids to get his electrolytes back into balance, fluids are lost volume for volume. This means that if you continue to lose fluid faster than they are replaced, your electrolytes will soon be out of whack again. And so they were…

When we arrived at the Emergency Room, Zachary’s extremities and bottom lip were purple. The doctors told us that if he had been lethargic they would have been very concerned. They were still not thrilled, but encouraged by Zack’s energy level. The purple extremity situation lasted throughout his admission. The doctors continued to be perplexed. I am happy to say that once his electrolytes were back in the normal range, the purple weirdness went away.

Zack’s body did another crazy thing. His output turned clear. That has never happened before. It has been like water often, but never clear. Z’s doctor told us that he believed there were probably some electrolyte pumps locked open because of his illness. Water in the body always follows the electrolytes. It does not take much for Zack’s gut to get into trouble and it takes longer than a regular gut to recover. I guess I needed to learn lots of new things this admission.

Zachary did extremely well with his IV placements on Tuesday and the first one for this admission. Sadly, that first one blew and when Zack learned he would need another one placed, angry badger made a dramatic comeback. A working IV was finally placed in the ER and we had to stop at X-ray on our way up to the ward. Zack was not happy. He unscrewed his IV line from his arm. When we got upstairs, the doctors wanted him attached to leads. Zack completely lost his mind then. I believe he scared the resident on duty that night. The doctors finally gave into his hysterics and said that because I was spending the night with him, they would allow him to keep the leads off. They also told him that meant that he would have to have his vitals taken more often.

I wish I could say that he calmed down then, but I cannot. By the time we got up to the ward it was 1:00 AM. There were sick patients sleeping in the rooms around us. Having a child losing their mind during the day is one thing, but at night it is even more upsetting. Zack did not want anything to do with the hospital. He told me that he hated everything about being there. I think it must be a bit like labor. After labor is over, you can forget all about the pain until the next time you are ready to give birth and then it all comes flooding back. I believe being sick, being tired, and being scared of all things hospital related got the best of our little fighter.

When the nurses asked Z to get into bed, he refused. He was still in full angry badger mode. I was in full sweating mode. It is NOT fun to see your child having an anxiety attack like that. Zack’s nurse happened to mention he was floating from the PICU for the night. That led me to ask about one of Zack’s most favorite nurses of all time while we ignored Z’s tantrum. When Z heard that his nurse knew our friend, Chris, he immediately calmed down and agreed to climb into bed. I am sure the entire ward rejoiced. I was afraid the morning would be just as awful, but when Z woke up, he declared that he was ready for a great day and that is just what he had.

I am happy to say that angry badger did not return for the rest of our visit. The next day was spent advancing Zack’s diet from clears back to a regular diet. One of our favorite GI doctors was on service and we were able to get his thoughts of Zack’s intestines. People continued to ponder Zack’s purpleness and Zack’s output came down to 2,400 ml. While that is still a lot, it is within the realm of Zack normal. Zack’s pediatrician checked in with us and we now have a plan to check labs when Zack’s output reaches 3,000 ml. It seems as though the CeraLyte helps us keep Z safe until we reach that level. I am so glad that there are people smart enough to invent products like CeraLyte and g-tubes. They have literally helped us save Zack’s life several times.

Zachary began bugging the staff about being discharged the next day. He was anxious to get home, because we had a water station to man for the Nathan Chris Baker Foundation’s Great 5K. Our family has helped with the water station for the last several years as a way to thank this organization for all of the things they did for our family when Zack was super sick. Zack is a master at perseverating and he had discharge on the brain. He eventually wore the doctors down and they agreed that we could manage well at home. While we were waiting for the final decision to be made, some special guests came to visit the kids on the ward. Zack was just a little bit excited.

The Foundation 4 Heroes sure now how to make a boy smile. Batman is his favorite super hero – as evidenced by his pillow case. You should check out their website and see all of the great things they do.

I am happy to report that Zack did make it home that day. He was able to help man the water station for the Great 5K race the next day. In addition, many of our friends rallied to help us as we were unsure if Zack would be discharged in time. We are grateful to all of those who helped us make sure the water station was up and running this year.

Zachary’s doctors are talking with their colleagues in the area to see if they have any ideas of how to help us slow Z’s output down. As his GI says, “We can’t keep doing this.” I agree. Zack is always just one bad illness away from disaster. The GI on service during Z’s admission said that if not for CeraLyte things would have been very bad. We are still waiting for an appointment in Boston with the Center for Advanced Intestinal Rehabilitation. I am not sure when that will happen, but I am grateful that Zack will be able to be seen by doctors who specialize in kids with crazy output.

As if all of this was not exciting enough, our son, Jake, graduated from the University of Maryland this week. Drew and Lindsey flew in from California and there was much rejoicing in the land. I am so thankful that Zack decided to be sick the week before graduation. Isn’t he such a thoughtful son?

I promise Zack had on a nice shirt during graduation…….


Jake worked extremely hard so that he was able to graduate in three years. He also had the honor of being a Senior Marshall at graduation. Jake has had to sacrifice a lot while Zack has been sick. Being able to have our whole family here to see him graduate was extra special.

Hug your babies!

~ Dawn

Zack Update

In the military you can be sure of a few things. First, you will get to meet a lot of amazing people. Second, you will get to travel to amazing places. Third, either you or the amazing people you meet will be moving somewhere new before too long.

Such is the case with Zack’s current surgeon. Zack has been an extremely fortunate guy. Despite the craziness of his disease, he has had incredibly talented and compassionate people caring for him. His original surgeon left us two years ago and it was hard. Little did we know that his new surgeon would be just as amazing or that it would be this surgeon who finally ordered THE test that found Zack’s diagnosis.

When you are the parent of a child with a difficult and complicated disease, having doctors who research your child, think about him after hours, and are always trying to come up with new and innovative ways to help him, the last thing you want to do is say good-bye. Happily, his surgeon let us know leaving the military does not mean he is done helping Zack. We can always reach out to him and have him consult with Zack’s team at anytime. I cannot even begin to tell you how comforting that is (to me).

As I have said many times before, the rest of Zack’s team here is just as wonderful. If only they could all stay here forever…..darn military. Luckily for us, Zack also has an incredible surgeon in Boston. She has been caring for Zack for the past 5 yeas and has performed half of his surgeries. This allows us to have one provider who will be able to follow him all the way through childhood. While that gives us peace of mind in the craziness that is Zack’s life, it does not make saying good-bye to his other doctors any easier.

Enough about that. Zack had his final appointment with his surgeon to discuss our plan going forward. Zack’s pediatrician joined us for the appointment as well. How cool is that? I told you Zack is a lucky boy. Having them both there makes life easier. It can get complicated having several doctors and keeping straight what each one said so that we can update the others. Having a team meeting like that really simplifies things and maximizes everyone’s time.

Together we were all able to all brainstorm his high output. An unconventional idea was discussed. I think I will wait to see how the idea plays out before telling the world about it. We talked about how great it is that Zack’s kidneys function well, because his intestines are falling down on the job. We discussed his obstructive episodes and made a plan for the next painful one. When that happens, we are going to head to the hospital for a CT scan to see if we can catch it in action.

Zack’s surgeon shared a new surgical procedure with us that might be an option for him in the future. I could explain it to you, but it would probably just cause your eyes to glass over. I will spare you, for now…. We talked about his enteric nervous system being out of whack at the cellular level and how best to manage that. One of the most important things we talked about is that before ACTG2 related disorders were identified, obstructive episodes were treated surgically resulting in loss of bowel. Loss of bowel leads to short gut, which leads to TPN dependency. TPN dependency can be life limiting.

To best help Zack avoid TPN, we need to make sure that nobody resects anymore bowel unless it is dead bowel. This should not be hard, because Jim and I are adamantly opposed to any more surgery unless it is life-threatening. Happily (?), all of Zack’s surgeries to date have been necessary and not exploratory. The best thing his surgeon said is that he is optimistic that a management strategy can be identified now that we have a reason for his intestinal dysfunction.

One of the ways we are planning to do that is by visiting Boston once again. Our plan is to meet with Zack’s surgeon and the short bowel team to see what new strategies they have for controlling Zack’s output. Although Zack does not have short bowel (in fact he has most of his small intestine still intact), his gut acts as though he does. If we can get his output under control, his sodium levels should normalize. This is huge because we currently spend an incredible amount of time each day trying to manage these levels. As his surgeon said….no child should have their own Morton’s Salt container.

I bet you have never seen a child so excited about a salt container before. He has been known to open it up and drink salt from it. I wish I was kidding. When that happens, we know it is time to rescue dose the boy and get his electrolytes back in check. Now that we give him CeraLyte daily, drinking from the salt container happens less frequently.

Whew. I am officially out of words for today. It is hard to believe, I know. Thank you for checking in on Zack!

Hug your babies!

~Dawn

Best Day Foundation And An Update

August was a month packed with lots of visits to Walter Reed and I wanted to wait until Zack had all of his appointments until I posted an update.  Originally we were just going to have a visit with Zack’s surgeon and a visit with genetics.  At our surgery visit, a referral to neurology was added. To add more excitement to our month, Zachary needed an eye exam.  In addition, Zack’s PCM retired from Ft. Meade and that seemed like the perfect time to transfer Zack’s regular pediatric care to Walter Reed.  This meant adding another appointment to establish care with his new doctor. Actually, we have known this pediatrician for years from Zack’s inpatient days, but she was not officially Zack’s doctor.  The way it all came about is a fun story, but I’ll save that for another time.  We are thrilled to have her supervising Zack’s pediatric care.

As August ended, we knew that we needed to see Zack’s GI and it just made sense to wait to update the blog until all of those things were complete.  Although by doing so, it makes for a long update…

Let me see if I can do a quick(ish) summary….yeah, right…you’ve met me.  Quick is not my thing, but I will try because it is 11:30 p.m.

Not much new happened with Zack’s surgeon other than learning that he was deploying, so we hope that nothing surgical happens in the next few months.  We did talk about some surgical options, but I refuse to think about those until Zack’s body tells us otherwise.

During Zack’s genetics visit, we decided to have whole exome sequencing done.  It is pretty interesting stuff.  If you want to learn more about it you can click on the link above.  The test takes several months to come back and we have been told that it only finds issue about 30 – 40% of the time, but it is one of the best tests available at the moment and much more precise than the last test Zack had 6 years ago.  Jim and I also had our blood drawn so that if abnormalities are found in Zack, they can compare our DNA with his.  We signed lots of papers and had lots of counseling about what this test can and cannot do and the different things we might discover.  Now we just wait.

Neurology really didn’t tell us much, but it did rule out lots of diseases.  The most interesting thing that I learned was that the brain and the skin develop at the same time during gestation.  Zachary has several skin abnormalities which the doctor seemed interested in, but the big diseases that occur together with the brain were ruled out.  We left there learning that the neurologist believes that Zack’s issues are chromosomal.  So, basically nothing new.

Zack’s pediatrician appointment was great because we have never had a pediatrician that truly understood everything going on with Zack.  This doctor really does.  She actually read his entire medical record back to our time in Germany.  That was certainly a time-consuming feat.  We were so thankful that his doctor took the time to do that so that she could really understand Zack and all of his medical concerns.

Zack’s ophthalmology visit was not as wonderful.  Last year Zack was so nervous about getting his eyes dilated that the doctor said he could wait until this year to do it, but that it had to be done.  Zack was even more nervous this year, but we worked on helping him through it and he was ready.  Before his appointment, the Red Cross Dogs made a special trip to see him to help him relax.  When we got to the appointment, Zack was clearly agitated…but ready to get his eyes dilated.  The doctor saw him and said, “Well Zack, I’m OK with waiting until next year to dilate your eyes, but I will leave that decision up to your mom. Just know next year you REALLY have to get it done.”

Um……who does that?  What doctor tells a child something like that and then makes the mom the bad guy.  I was not impressed.  Zack was ready to do it because he knew he had no choice.  Now he thinks he can get out of it again.  I rarely complain about doctors on this blog as it really serves no purpose, but come on!  That was craziness.

Zack and Elsa and Bailey before his eye exam.

Z’s GI appointment today was interesting.  For the past month we have been noticing a downward trend in his weight.  Today we talked about getting more calories in him through his feeds.  He currently receives 1200 calories overnight and we are bumping that up to 1400.  His g-tube, which was too small before his revision in March, is now too big because of his weight loss. That was resized today.  We also discussed seeing if a trial of steroids might help Zack.  He is still dumping (too much output) for some unknown reason, still has belly pain, still prolapses and still has days where his stoma is swollen.  The thinking is that perhaps Zack’s issues are some weird autoimmune response and that a course of steroids (several months) might help calm that down. Because this has been an issue for years, nobody knows just how long it might take.  From what I understand, we will be watching his body for clues to measure its effectiveness.  Steroids come with their own set of side effects, but one of the good ones, for Z, is weight gain.

If the steroids improve his symptoms, we will take him off of them and wait and see what happens.  If his symptoms return, we will do scopes and full thickness biopsies to get a baseline.  Then start the steroids back up for a time and repeat the biopsies to look for improvement.  If they don’t work or if Zack has adverse side effects, we will stop the treatment.

Whew.  Two more updates.  First, Cap has started Medical Assistance Dog training to try to help Zack with his medical trauma anxiety or PTSD.  We are all pretty excited about that.  It is a long process, but Cap seems to really enjoy it and Zack loves it!

Second, Zachary had the opportunity to head to Ocean City, MD last weekend and go SURFING!  The Best Day Foundation hosts events in different cities for children and young adults with disabilities to allow them to try adventure activities that they would normally not be able to.

Zack was paired with some buddies, Angie, Terri and Mason, who helped take him around to different stations.  They were wonderful and so encouraging and loved on Zack and helped him feel incredibly special.  A big team of volunteers worked to help the kids surf and boogie board, play in the sand, meet some super heroes, have lunch and get medals and goodie bags.  The weekend was super rainy but, for that hour and a half, not one drop of rain fell, the sun came out and once each child had several opportunities to get into the water the skies opened back up.  Perfect timing.

I leave you today with our favorite pictures.  Just a little warning….I am posting a ridiculous amount of photos.  My blog also serves as my journal, so I wanted to make sure I could find these pictures easily.   Some pictures are our own and some are from the Best Day Foundation Chesapeake Bay Facebook page taken by Desiree Ortman Photography and Nick Denny Photography.  I’m sure you will be able to tell which are ours.  If you are on FB, head on over to the Best Day page and check out the awesome photos of the event there as well.

Zack all suited up and waiting his turn.

A very happy surfer!

Zack after his first ride being asked if he wanted to go again…heck yeah!

The amazing volunteers who helped Zack catch some waves.

Zack’s buddy, Angie.  She made his day extra special.

Another of Zack’s buddies, Ms. Terri.

First boogie boarding attempt.

Check out the size of those waves.

Zack’s team.

Just a boy enjoying the ocean.

Zack telling us that he really NEEDS a surf board.

Zack’s cheering section.  Dad, Mom, Abby and Dan.

Celebrating with pizza and some of Zack’s favorite people.

And finally, one of Zack’s surfing runs.  The video is a bit blurry, but totally amazing. Thank you to the Best Day Foundation for an amazing experience!

After writing all of this, I came to the conclusion that jamming all of this info into one post was a bit nutso.  If anyone besides my mom actually reads to the end, I will be super impressed.

Hug your babies!

~Dawn

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

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…..

 

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Update

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

Vacation and Boston

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

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

IMG_20160813_231343_01Zack helping Captain Don drive the boat.

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

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

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

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

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

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

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

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

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

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

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

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

IMG_6104Hug your babies!

~ Dawn

A Summer of Fun!

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

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

IMG_6044Working on his forehand.

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

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

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

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

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

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

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

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

Now, about that vacation…..

Hug your babies!

~ Dawn

 

 

Zack’s 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.

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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.

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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.

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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.

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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