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



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…..




A New Record

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

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

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

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

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

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

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

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


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

Hug your babies!

~ Dawn



The week in review…

This post contains a little bit about a lot of different things.  It is a hodge-podge of information.  It parallels our life.

First, to answer your burning question.  No.  We do not have a date.  Yes.  It is frustrating.  We are making progress.  We got an email saying that all of the paperwork necessary to complete the stoma repair has been submitted and we are now waiting for the OR to schedule his surgery.  We have no idea what that means as far as timing is concerned.  Obviously, our definitions of “as soon as possible” differ.

On a similar note, Zack saw his GI yesterday at Walter Reed.  It was a good visit in many ways.  I appreciated hearing that Zack looked good.  I appreciated knowing that besides the obvious surgical issue, Z is healthy.  It was nice to have some questions answered and to have a doctor actually lay eyes on my child.  We kept thinking we were leaving any day, so we had not actually seen our doctor in almost two months.  Do not be alarmed.  Our doctor gets plenty of texts from me when things are going screwy.  Zack is in good hands.

This week we also addressed Zack’s ADHD medicine again.  We had taken him off of Adderall XR because his stuttering was out of control.  He had been off of the meds for almost a week when we tried an experiment.  We cut his dose in half to see if his disfluency would improve.  It didn’t.  After much discussion with this doctor and his GI doctor, we have decided Adderall XR is NOT the way to go for Zack.  We will re-group and try again next week.  Zack’s speech is still pretty significantly altered.  I just do not understand how it all works and why, if the medicine caused the stuttering and word weirdness, taking him off the medicine does not fix it.  He is an enigma.

A sweet friend in Texas uses Essential Oils and had heard of success in treating ADHD with the product.  She sent us a sample to try.  Today is our first day using the oil.  I do not notice any difference yet, but he sure does smell awesome!  I like that it is an all natural alternative to treating ADHD and it does not have any crazy side effects. If it does not work, we are no worse off than we are now and if it does work we can celebrate.

This week we also met up with a friend from our time in Colorado Springs.  She is pretty cool because, well, she is just cool AND she happens to be a potter.  Jake and Zack got to take turns learning how to make a bowl using the potter’s wheel.  I took pictures (of course) and had fun catching up with my friend.

Zack’s lump of clay:

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Zack’s bowl:

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Jake’s lump of clay:

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Jake starting his bowl:

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Today Zack went to a pool party for his friend.  He did such a good job just getting his feet wet.  People commented on how neat it was to see his self-control in staying out of the water.  I suppose that is true.  He did listen really well.  He also knew that if he got wet, his wafer would come off and that would really and literally stink.  It was a really fun day and now we are having fun waiting for his stoma to recede.  It was worth it.

Z being careful to only get his feet wet:

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The end of Z’s awesome day:

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And there you have it.  Our hodge-podge week in review.  Just living the dream and taking a day at a time.  Looking forward to a great last week of school next week.  Maybe if we are lucky we might actually find out when this boy is having surgery.  That would be awesome.  Until next time…..have a great week!

ADHD Meds Take Two

Welcome to our second edition of ADHD meds gone wrong.  Focalin was our first attempt at medication and it resulted in one very drugged out little boy.  We discontinued that after one dose.

Zack’s doctor decided to try Adderall next.  We started Zack at a very low dose to try and catch any side effects quickly.  We learned that Adderall is a fast exiting drug leaving the body after just a few hours.  Zack took 1.25 mg for ten days with no noticeable side effects.  He then moved up to 2.5 mg for a few more days, then 5 mg and was still side effect free.  In fact, I could not tell any noticeable difference in any aspect of his behavior.  We decided to try moving Zack up to 5 mg twice a day as his particular brand of Adderall was a 4 hour release capsule.  Having 5 mg twice a day covered the entire school day.

While Zack was on the 5 mg of Adderall twice daily, we began to suspect he was focusing a little better.  His teachers said he was a little less fidgety.   I still did not see much of a difference, but I was happy someone could.  I was noticing that Zack was noticeably less hungry at lunch.  In fact, many days he did not eat a thing.   This concerned me because Zack has a pretty poor appetite without the medication.  Losing weight is not on our plan for getting Zack healthier.

Around this time, we met with Zack’s Developmental Pediatrician to get a weight check and a blood pressure reading.  Happily, he had only lost 11 ounces, I can live with that.  His blood pressure was good and his doctor checked his heart as well.

We decided that Zack would be a good candidate for Adderall XR which is an extended release capsule that lasts all day.  He had his first dose of 10 mg on Tuesday and by the end of the day he began stuttering.  Zack stuttered when he was younger, but we have not seen any evidence of the stutter in over a year.

By Friday Zack was a mess.  Seriously.  I received several notes from his teachers at school expressing their concern over his inability to communicate.  My heart was burdened for my boy when I listened to him struggle to talk.  Zack’s stutter is more of a sound getting stuck kind of stutter.  It is usually occurs with the first sound in the first word of a sentence.  For example, if he was trying to say I, it would be a very long and strained I that never finished being said.  I cannot really explain the sound any better than that.  At any rate, it is super frustrating for Zack and it upsets him.  We were driving to speech, go figure, and he was stuck on I for at least 15 minutes.  He was reduced to tears and when he was finally able to get his thought out he was very clear that he did NOT want to take this medicine.

The sad part about Adderall not working for Zack is that he was actually able to focus really well in school and at home for several days.  He worked so well for his Home and Hospital teacher that I had to keep checking to make sure it was my child.  Trading school work for not being able to communicate is not an option though.

We stopped giving Z Adderall on Saturday, called his Developmental Pediatrician on Tuesday.  His stuttering has improved, but now his speech is a mess.  This happened once before a few years ago.  At that time, he had an acute loss of speech which led to all kinds of testing, a CT scan, overnight EEG and a trip to the neurologist.  Happily, nothing serious was found.  He is talking much like that again.  He is choosing to use just a few words instead of complete sentences.  In addition, many of his words are out of order – think Yoda.  “Mom, a drink please get me.”   “A kiss your son wants.”

Life is certainly never boring around here.  I am hoping that since he is done with the Adderall, his speech will return to normal soon.  I am not really sure why the Adderall triggered this response in Zack.  It would be interesting to have an answer to that question.  Of course, I have many questions I would like answered about my boy, so I will just add this one onto my ever growing list.


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Some carnival fun with Z’s buddy.  No talking necessary!

Feeling Anxious

Last week when we spoke to Cincinnati, they said that they would call on Wednesday with “The Plan”.  Wednesday came and went.  Thursday came and went.  On Friday I started sporting a ‘tude.  Did these people realize our lives are on hold waiting for them?  Did they enjoy playing with our emotions?  Yep.  I had a great attitude and very little patience.

To further exasperate me, our favorite GI doctor did not return my telephone consult this week.  I had questions.  They were not urgent, so I decided that I should use the real contact procedure and not text him.  I figured he might appreciate the break.  When you leave a telephone consult, the doctor has 72 hours to return your call.  My mood was not pleasant.  I know I could just have texted him and he would have written right back, but I was trying to be respectful of his time and the fact that he has other patients and a life.  Honestly though, I am still just a little bit irritated and need to get over myself.

The last part of my stellar mood stems from Zacks new ADHD medicine.  He has been on it for 6 days now.  He is on Adderall XR and his appetite is pretty much non-existant.  His doctor for ADHD said that she wanted to see him last week and that someone would call and give us the details of his appointment.  Nobody called.  Is it an emergency?  No.  Am I worried about this skinny boy’s lack of appetite?  Of course.  The child has like 3 foods he will eat without a big fight.  I have no idea how much weight he lost this week, but I know he lost some.  So, we wait.  Are you getting the theme of my week?

Happily, after I had abandoned all hope of hearing from Cincinnati this week, the colorectal nurse called a little after 5 p.m. yesterday evening.  No, we still do not have a date.  We have a new surgeon.  We have an outline of a plan, but it is still emerging.  I know I should be grateful for that, but I’m just annoyed.  I have had almost 24 hours to think it through and I think I know what my deal is….I’m tired.  Tired of all of it.  Ready for it to be over.  Ready for something to go smoothly.  Ready for something to happen the way I want it to….basically, I’m being selfish and acting like a big baby.  I just need to get over myself.  I’ll get right on that.  Tomorrow.

Here is what we do know.  Whenever the date finally gets set for Cincinnati we will have testing on a Thursday.  The testing will include a contrast enema and colostogram as well as a urine sodium level.  Friday we will meet with our surgeon to discuss the procedure they want to do and ask all of our questions.  Surgery will be the following Monday or Tuesday with a 7 day inpatient stay.  Zack will have PICC line placed again as he will be NPO or nothing by mouth for a few days (he’ll be thrilled).  Once he is discharged, we will have to hang-out in Cincinnati until the following Friday to make sure all is well.  If you have counted the days on your fingers, you will have already figured out that this will end up being about a 2 1/2 week stay.

The nurse I spoke to was very nice.  She has emailed us lots of information about the Ronald McDonald House, the Guest Services department and a brochure for parents of patients.  I have not yet read all of that because, as I already stated, my mood was poopy.  I did not sleep well last night because I just feel so anxious about everything.

While my apprehension is understandable, I have been trying to figure out what it is really about.  As far as I can tell, my main issue is not knowing how this revision would be any different from the other revisions Zack has already undergone.  I really do not want him to have another surgery that does not work.  I need a LOT more information.  Another issue I have is that the nurse did not think that Cincinnati has a biofeedback program for constipation.  How on earth will we ever get Zack ready for reattachment?  He is so defensive to any touch on his bottom at the moment. He has to get past this issue as well as learning how to use his muscles properly. The program at Walter Reed was working well initially, but we need one more tailored to Zack’s needs.  We will not be able to have our GI consult in Cincinnati until after Zack has surgery and recovers, so he will be a “multi-step” patient.  This means we will be going back and forth to Cincinnati for a few months.  It would be my preference to have all of his testing done before surgery, but I’m learning I do not always get my way.

Now you know all the depressing stuff.  Let me change things up on you and leave you with all of the good things happening around here, because obviously I need to be reminded.  First, Zack’s ADHD medicine has actually been working on his focus issues.  He worked hard at school and stayed on task.  Here at home, he actually worked with his Home and Hospital teacher for over an hour without getting distracted.  It was a beautiful thing.

Second, our sweet neighbors surprised us with a gift card to help us with our trip.  We have such a great neighborhood.  Our neighbors did not know that yesterday was a hard day, so their gift was even sweeter.

Finally, last night we had two fun events.  Jake had his end of the year Drama Banquet.  Zack and I went for the first 30 minutes and loved seeing the kids roast the Seniors and perform their favorite scenes from the year.  Jim hung out with Jake for the rest of the banquet while Zack and I went to his school for the annual Mother/Son Dance.  It was a bit wild for Zack, but he had a great time once he got used to the craziness.  He danced his heart out and I have photos to prove it.  It was totally worth the big, fat, bloody stoma he had later and the wafer change that lasted until 11:15 p.m.  – mostly because I had a girls night at a friend’s house after that and missed the whole wafering event.  Just kidding, sometimes the pain he has later is worth it because of the fun we have and the memories we make.


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I am sure that in the next few days I will come to terms with our new plan for Zack.  I am also sure that I will talk to his current doctors and get their opinions because I value them immensely.  I have to keep reminding myself that Jim and I are the parents and we have the final say on what is best for Zack.  If either of us are uneasy about the new plan, we can veto it.  We just want our child to get better.  Until then, if I am grumpy, please ignore me.  I promise, I am working on getting over it and back to my happy self.

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Here is an iPhone video of Z dancing to “Everything Is Awesome!”.  This is why I let him off the no activity leash every once in a while.  Look at how much fun he is having!  If he is in such a good mood, I should learn from him!