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

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