Special Olympics 2018

Before I tell you all about Zack’s amazing day, a health update.  This last month has been rough on Zack.  His belly has hurt since his surgery and for no discernible reason.  He has been consuming a LOT of Tylenol and Motrin.  A lot.  The good news is that those medicines help with his pain and he has not needed to be seen for anything stronger.

He will tell you that his g-tube still hurts.  I am sure that is true, but nothing is visibly wrong with it.  Sadly, we think his keloid is growing back and that stinks.  In addition, he prolapsed 4 times last week alone.  Prolapsing hurts and gets in the way of things Zack likes to do.  He does not like that.  Last Friday we had an impromptu neighborhood picnic and he did not want to miss it.  He was in pain in the shower and mad about missing fun, so he took the handheld shower head and pushed his intestines back into his body.  Because why not?  That did not feel super great, so I don’t think he will do that again.  I hope….

All of the belly pain has meant he has not been eating much.  Because Zack’s doctor increased his feeds, he has not been losing weight which is good.  But he is not gaining weight at the moment like we had hoped.  Thank goodness for feeding tubes.

Enough of the medical stuff….

Zack woke up this morning at 6:20 a.m. ready to get on the school bus, which arrives at 8:27.  Why?  Today was the Special Olympics and it is one of Zack’s favorite days of the year.

Getting greeted by cheerleaders.

This year, several of Zack’s classmates and their homeroom teacher came along to be his cheering section.  As usual, they made some awesome signs, offered lots of encouragement, and were super kind to brave the extremely frosty morning. It was 38 balmy degrees and windy as all get out at 9:30 a.m. when they all arrived.

Mrs. Solomon – Zack’s Homeroom Teacher

In addition to Zack’s classmates, Zack had several other people in his cheering section.  Mr. Tozer, his coach, has been helping Zack for the past three years.  He really knows how to motivate Zack to do his best.

Mr. Tozer coaching Zack before his tennis ball throw.

Zack’s grandma and cousin, Kelsey, were there today as well.  Kelsey has such a kind and compassionate heart for Zack.  She also helped me corral him and that is a true gift given the amount of energy Z had today.  Grandma is one of Zack’s biggest supporters and comes to the Special Olympics every year.

 

 

 

 

 

 

 

Zack also had his buddy, Dan, there to cheer him on.  I’ve written about Dan before.  This young man truly has a gift with children and especially kids with special needs.  Zack lights up when Dan is around and is always asking when he can see him next. Zack also says that Dan is his best friend because he listens to him and is kind and likes to play Lego. His parents have raised an exceptional young man!
Some other fun pictures:

Zack and his buddy, Jake, getting their tennis throw medals.

Long jump

Zack’s long jump video

Medals

100 Meter Dash

Home with his adoring fans.

And that, my friends, is all the typing these fingers can handle for one day.  Have a wonderful weekend!

Hug your babies!

~ Dawn

 

 

 

You Know You Are In Trouble When….

You know you are in trouble when your sister hears from someone else what is happening with your child and reprimands you AGAIN for not updating your blog….I really think she needs to get on Facebook to hear all the most current info.  Because she is extra amazing, I will indulge her request.  But first…enjoy this photo of my two sisters and Zack.  Carie (on the left) lives overseas and came back for a quick trip a few weeks ago.  We all spent the weekend together at Becky’s house (on the right) and Zack was able to debut his new shirt. I’m sure they will both be thrilled that I posted photos of them.  Sisterly love?

Enough of the family stuff.  When I last posted, Zack had just returned home from his hospital stay. We had been told that his surgery site would be painful and I wrote about how it really was not painful at all.  Yeah, why did I do that?

A day or two after getting home, Zack’s surgical site started looking very angry and red.  Then it started weeping.  Zack started having lots of pain.  Soon there was pus.  It was gross and evidently infected.  We headed back to the surgeon and Zack was given antibiotics which we knew would help him feel better right away.  Except they did not.

We could tell that the infection was looking better, but Zack was not feeling better.  His g-tube just kept hurting.  The pain was pretty intense and kept us from attaching him to feeds and his CeraLyte.  We could tell he was losing weight and beginning to have headaches and look unwell  Even worse, it kept him from sleeping.  Nobody in this house does well without sleep.  Nobody.

Last night was the last straw.  Zack did not fall asleep until a little after 2 a.m.  We disconnected his feeds, gave Motrin, rubbed his back, rubbed his belly, and prayed like crazy that he would just go.to.sleep.  Today Zack was scheduled to have some benchmark testing at school, but he was exhausted and I let him sleep until he woke up. I am happy to report that I took him to school in time for the test.  While he was at school, I tried to reach his surgeon and texted his GI.

Zack’s surgeon had us come in and decided that they would take out those pesky plastic bolsters that were placed for his g-tube to sit on while the incision healed.  They were sutured to his skin in four places surrounding his g-tube and we were pretty sure that they were the cause of all the pain.  You know, the pain the surgeon warned us about…that I said he didn’t have in my last post?  Just reminding myself that I said that.

Because of Zack’s angry badger history, they had an OR scheduled for Wednesday in the event that he was unable to handle the procedure.  It was only four little sutures, but things smaller than that have caused him to lose his mind before.

I am happy to report that Zack did incredibly well today.  He was able to have his sutures removed with the appropriate amount of pain.  Before we left, we made sure we could get Zack’s g-tube extender placed without too much pain.  We were also able to see one of his Wound Ostomy Nurses who helped form a barrier between the wound and his ostomy belt so that it would not rub on the raw skin.  And most importantly of all, he was cleared to participate in all of his normal activities once again.

Jim and I knew that Zack had lost weight and we were curious to see how much.  As part of Zack’s vitals check he was officially weighed.  Turns out he has lost between 3-4 pounds depending on which scale we use.  We look forward to getting calories and sodium into him tonight.  We are also hoping his appetite returns quickly. Pain and low sodium can result in decreased appetite.  Over the past few days he has eaten so little it is amazing he has any energy.  On Saturday his entire caloric intake consisted of half of the crust off one piece of pizza.  Yesterday he had a few bites of cereal and a few bites of ramen.  Tonight he actually ate two forks full of noodles and a jello cup.  Baby steps.

On Friday we will see Zack’s surgeon on more time to make sure he is continuing to heal.  I am sure that he will…..

I leave you tonight with a photo I just found on my phone.  I love finding surprises like this, but I am not so sure if Cap loved having his picture taken!  He seems to be saying, “Save me from all the love!”

Hug your babies!

~ Dawn

 

Surgery #10

Quick update.  Zack started complaining of g-tube pain in school on Tuesday.  His school nurse told me his g-tube area looked swollen.  Being an awesome mom, I told her it always looks that way.  I was wrong.  She was right.

That evening Zack was in a LOT of pain.  We spoke with our friend who suggested contacting his doctor and taking him in to the ER.  We texted Z’s GI doctor who suggested the same thing, but at that point it was 11:30 p.m. and Z had finally fallen asleep.

Yesterday I figured I could probably get an appointment and avoid all the germs in the ER.  Wrong.  Off we went.  Saw Peds right away and the surgery team came quickly as well.  Did a contrast study to show g-tube was placed right and noticed the balloon looked defective.  Z still in pain, so we decided he would come back in the morning to have the area numbed and to get the tube out and a new one resized.

Today started off that way, but our GI nurse extraordinaire suspected it was actually stomach mucosa.  Doctors came in and agreed.  Surgery called again.  Several hours later it was determined that this needs to be fixed.

Currently we have three different scenarios of what will happen.  The easiest involves an overnight stay.  The more complex a stay of 4-5 days.  Zack will be admitted in the morning with surgery being an add on late in the day.  We will keep you posted (Dad, Carie, Sandy).

Hug your babies!

~ Dawn

Rare Disease Day

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

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

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

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

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

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

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

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

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

Hug your babies,

~ Dawn

 

 

A Different Kind of Post

Yesterday I encountered a situation so foreign to me, that I actually had to pinch myself to make sure it actually happened.  I was going about my day when I received an email from a stranger telling me that she believed one of my photos from my blog had been “stolen” by a person on Instagram who was claiming it as their own.  She sent me a screen shot of the Instagram post and my blog with the same photo.

Being rather leery of emails from strangers, I was hesitant to believe her.  After some digging, however, I found that it was actually true.  Admittedly I was angry and also found myself speculating about the identity of the Instagram account owner.  The account showed a young woman from the UK who claimed to be ill with a number of different ailments.  My mind immediately wondered if this was true or if it was perhaps a big man in a thong in Bermuda.  I am just being honest.  It was not a kind thought and I am not proud of myself for thinking it, but who knows what is real on social media these days.

I do not post pictures of Zack’s ileostomy.  It is private and a line I choose not to cross.  There may come a day when he and I decide together to do this, but I cannot currently think of any reason to do so.  This particular picture showed Zack’s ileostomy bag full of blood.  It is an old picture taken over three years ago. It is faceless, shows no skin and could be anybody.  Still, to see his picture being claimed by a stranger to show others how ill she was really upset me.

I contacted Instagram and they removed the photo.  My sister and Jake contacted the account owner and expressed their “unhappiness” with the situation.  Let me just tell you, Zack has a great many people looking out for him!  However, Jim and I decided not to contact her right away, but rather sit with our thoughts for a bit and pray for her.

As I have done that, I have felt my heart soften for this person.  If indeed she is the young woman shown in her profile picture, she is very young.  Clearly, my photo is not the only photo she has used in this way.  Her cry for attention is loud. What causes a person to steal a picture of a sick child, put it up and Instagram and claim it is a picture of their current situation?  Is she lonely?  Suffering from a mental illness?  I recently read about an illness called factitious disorder where people do this very thing.

While I am not happy that Zack’s picture was used in this manner, I find myself worried about this stranger.  I hope that she is able to find the help that she needs to get better and to understand her worth.  I hope that she is surrounded by people who love her and encourage her.  I hope that she will come to know how much God loves her.  I think I will be praying for this young woman for a long time.

~ 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

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…..it 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 you..it’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…..

 

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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