Archive for June, 2017

A walk and a nap

Chris and I were able to go on a long walk after breakfast this morning.  It was nice to get away.  The sky was cloudy.  The wind of blowing.  The beach was clean.  Wonderful morning.  img_6213

After the walk, we came inside and everyone worked on getting their chores done.  Then outside is where everyone went.  Dad doesn’t care where, but only that it is done outside.  I decided to go out on my porch and work on a few things.  Then Ainsley decided to join me.  She had a different focus.  A nap.


She had played in the water for awhile and had now decided to sleep.  And sleep she is.  She has been asleep for hours.  Of course, as someone who has fallen asleep on that same deck chair, I know how wonderful it feels to nap outside in the shade with the wind blowing all of the bugs away.  In fact it is even cool enough up here to wrap up in a cozy blanket and not get hot.  So peaceful.

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is to annoy each other with love.  We call it “forced love” in our family.  When someone is grumpy and the general methods of trying to cheer them up isn’t working, then we do a little “forced love”.  Lots of hugs piled on hugs.  Tickling. Trying to get them to laugh.  Sometimes it works.  Sometimes it doesn’t.   Ainsley was the target of our family cheering up last night.  And her wrath was fierce.  She didn’t want to take a walk with us, so we decided to pick her up and take her with us.  This obviously did NOT go over well.


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So what did your family do today?  Well today Dad decided he was tired of looking at the county’s port-a-potty right outside our porch view.  So he decided he was going to move it.

Granted the fact that it had been blown over after the sanitation guys had cleaned it out made it an opportunity that he couldn’t pass up.  But of course this required the entire family (or so he says).


Then we talked about how the potty was no upwind from our shelter.  It is also the first port-a-potty on this stretch of beach, so we get lots of visitors. But it was still fun.  And watching the whole family work together to get it in the right place was cool too.

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We received an email yesterday telling us that Ainsley had won a free week at Girl Scout resident camp.   She was put in a drawing because she had registered early for her membership next year.  And she actually won.  At first she was excited and then she got nervous.  Worried that she wouldn’t know anyone.  Worried that she wouldn’t make friends.  Worried that she would miss that last few days at the beach house. Once I assure her that she would be fine.  And in fact, the last few days of us being at the beach house will be more about packing and getting ready to go home.  She jumped at the chance to not be here.  Smart girl.  So now she is going to Camp Misty Meadows for a week.  She is so excited.  She has never gone to camp by herself.  I think she will be great!  img_6201

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Still sick, but at least I am back with my family.  I am taking it slow, but Chris has been pushing me to do more and not to just sit on the porch.  So I’m trying.  It still feels great to be here!!!

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For the most part living in a house full of teenagers is a emotional roller coaster. And then there are times that I realize the years of training and raising of these children into young adults does occasionally pay off.

My eldest has been an awesome helper this week.  I let her do whatever she wants during the day and a few times a day she brings me food.  And even better . . . she can do the grocery shopping.  Give her the list.  Give her the money.  Send her inside. She texts me when she is finished.  Awesome.


The best part of all is that all I have to do is tell her I need Diet Coke and she buys not one pack or two packs, but three packs!!  She was fearful that I would run out.  Now that’s a good kid.

I am thankful for Madie this week.  I am still home and still exhausted.  Hopefully tomorrow we will go back to the beach.  This sickness thing stinks.  Getting better at home has been a huge blessing, but its time to reunite with the family.  So I pray tomorrow we will get there!

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A big update on Ben.

It has been awhile since I’ve posted anything regarding Ben’s health status.  So since I have a lot of “time” on my hands.  I thought I would share how Ben is doing.

First of all, Ben is currently doing well.

Two years ago, Ben had his third open heart surgery.  I posted a lot about that.   One year ago, Ben had a Melody valve placed.  Each time the goal for the surgeries was to solve all of the variety of symptoms that he had been having.  And each time it solved some issues, but not all.

During the last three years Ben has had a series of problematic symptoms that have caused him numerous health issues and a lot of missed days of school (last year he had over 50 absent days and that doesn’t count the partial days where he either had a doctor’s visit or went home early because he didn’t feel good).  High blood pressure, low blood pressure, fatigue, vomiting, diarrhea, migraines, dizziness, low muscle tone, chest pain, etc., etc., etc.

When you are diagnosed with high blood pressure, kidney disease, congenital heart disease, severe acid reflux, and dysautonomia (just to name a few).  The symptoms can point to any and all of these diagnoses.  So for the last three years, we have gone through one specialist after another, one test after another, one medication after another to try and solve all his health issues.  These issues aren’t like a rash.  They interfere significantly with his daily life.

After Ben’s last valve placement the cardiologist gave us a good report stating that it looked like the valve had solved the leak for the moment. So since Ben’s heart was in a good place, we decided to tackle Ben’s stomach issues.  He has been randomly throwing up and struggling with severe heart burn since he was born, but it truly became a problem went he went to kindergarten and he kept getting sent home because he was throwing up in school.   Over the years, we have increased his meds, added meds, completed a lot of diagnostic testing, and he continued to get worse.  So last summer I made an appointment with a doctor who had a reputation for looking at alternative ways of dealing with GI issues.  At that point, we felt like we had exhausted traditional medicine.  As of last spring, the last straw for us was when we had several doctors who said, “We know he is having the symptoms. Our tests show that the issues are there, but we have no idea why or how to solve it.”  So my thought was, talking to this doctor can’t hurt.  Chris finally conceded to going to this doctor.  He does not like “alternative” medicine.  But the poor boy had been throwing up almost every day that summer and fall.  So why not try something new?

After reviewing Ben’s long medical history.  She ordered several test.  The only test that was invasive was blood work.   After the testing, we met with her.  She said Ben was sensitive to a dozen different foods.  He wasn’t having an anaphylactic reaction, but his immune system was still attacking the food in a different way.  It was a slow buildup that would attack the lining of his esophagus, stomach, and intestines.  So Ben started a new diet.   He is allergic to the following: Clams (gross), eggs, milk, cheese, honey, peanuts, soybean, apple, bananas, coconut, barley, bran, corn, gluten, malt, rye, and wheat.  This diet is really hard.  Gluten-free and milk-free isn’t so bad.  Add corn-free, soy-free, and coconut-free and its like climbing Mount Everest without a sherpa.   I didn’t know what to do.  But its just a diet, right?  If it helps, then it is totally worth it.

So then came the hard part . . . sharing this information with his other doctors.  Our pediatrician is awesome, but she won’t recommend anything that doesn’t have peer-reviewed research backing it up. It is one of the reasons we like her so much.  But so far, she and Ben’s other 1000 doctors hadn’t found a solution to dealing with Ben’s GI problems.  So we confessed.  I got in trouble. She called this other doctor a quack.  I just kept assuring her that this wasn’t invasive and that it was only a diet in the end.  And better yet . . . after a month of not eating any of these foods, he stopped throwing up.  He was actually feeling better.

A few days later I get a phone call from the pediatrician’s office.  Apparently Ben had been on our pediatrician’s mind and she woke up one night thinking about Ben’s GI issues and all of the recent developments.  She then called Ben’s GI doctor and discussed her idea with him.  The nurse was calling to give us an update.  Both our pediatrician and the GI doctor thought Ben might have a rare disease called EOE.  And that they had gotten an appointment with Ben to see an allergist at TCH that specialized in this type of disease.

So this quack doctor may have been onto something ;)!  So a visit with the allergist, GI doctor, and kidney doctor led us to finally deciding to allow the GI doctor to do an endoscopy, patch testing (a different kind of allergy testing), and some more blood work. After months of these numerous visits and testing, the end result is . . . Ben is allergic to the foods listed above plus chicken, beef, and rice. An additional patch testing called T.R.U.E. test showed he is allergic to gold, fragrance, and other chemicals I can’t even name. This was terribly overwhelming.  The endoscopy showed that Ben was showing changes to the basal layer of his stomach and esophagus. He also showed a large amount of bile in his stomach.  So the doctor could see that damage was occurring to his stomach and esophagus, but he cannot tell what is causing all of the damage.   The biopsies did not show that he had EOE.  The allergist said that all of the testing must have been false positives, that she didn’t know why or what was causing any of his issues and she offered no solution.  I have never felt so helpless. It was all I could do to walk with Ben to the car without crying.

As soon as I got into the car, I just started crying. Ben reached over and patted my arm and told me that it was going to be ok. Here is this kid who has been through so much and he is comforting me!!! That made me cry even more.  I rarely cry.  I rarely get upset.  But after everything we had been through and especially what Ben had been through, when a doctor says, “Sorry. I can’t help you,” I just want to run away and never come back again. We have had this happen to us so many times. “Sorry. Clearly he has problems.  The tests show it.  But we don’t know why.  We don’t know what to do to fix it. And we have no plan on how to make this better.  No need for a follow-up.  Go back to your pediatrician.”

Are you kidding me?  No they are not.  This time both our GI and pediatrician were upset with the allergist.  They both said that despite what the allergist said Ben needed to continue the diet and that they would continue seeking help from their colleagues to get to the bottom of Ben’s symptoms.

Meanwhile, Ben went back to his neurologist to deal with his migraines.  So we’ve added a migraine preventative med to his regimen.  That doctor believes that he might have a mild connective tissue disorder.  So Ben spit into a cup for DNA testing.  And he will have an EEG for 24 hours to monitor his brain.  Sounds like fun, right?

And . . . Ben broke his foot again. Same bone as last year, but on the other foot.  Seriously, he’s been in a boot for three springs in a row.  At least with this one, we can chalk it up to him being a 13 year old boy!   As the doctor said, at least he feels well enough to run around and play.

To top it all off . . . Ben has been doing cardiac rehab this year at TIRR. So twice a week, we would go to rehab in the morning.  After the diet changes and his broken foot, he has been losing so much weight and muscle tone that we have now having to give him vegan protein smoothies every day.

So here’s the final result:

  • Cardiologist – increased leaking from pulmonary valve but as of last visit the leak had stabilized to a moderate level.
  • Neurologist – diagnosed with migraines and prescribed new meds for prevention. is doing additional testing for connective tissue disorder. And ordered an at home EEG.
  • Nephrology – lowered blood pressure meds and everything else looks good
  • Allergist – yes, he is allergic. no, he’s not allergic.
  • Gastroenterologist – continue elimination diet.  Added a new med to coat the stomach/esophagus to aid in healing.  will share Ben’s case with colleagues.
  • Podiatrist – thinks Ben has an inflamed growth plate in his foot and has ordered an MRI.  Must be non-weight bearing for a few months.
  • “Quack” doctor (but in reality she was the first doctor to help Ben’s vomiting.  Ben told her the last time that she was his favorite) – keep up the diet.  would like to test his “output”  for any deficiencies.
  • Psychiatrist – Ben is dealing with significant stress and anxiety.  Continue to see therapist and increased medicine.
  • Therapist – worried about Ben.  sabbatical can’t come fast enough.  He needs a break.
  • Physical Therapist – he is losing muscle tone. He is losing so much weight that his body is starting to metabolize muscle. Increase exercise and protein intake.
  • Dysautonomia specialist – currently not taking any new patients and no other dysautonomia specialist will see Ben due to his complex medical history.
  • Orthodontist and dentist – Yep. He has loads of teeth issues.

And of course, there is our pediatrician who continues to be the team leader and help us deal with all of Ben’s health concerns.   She is fabulous and I don’t know what we would do without her.

But did you count those specialists? 11.  Eleven specialist to drive to, to make appointments with, to follow through on their orders and tests, and to make sure we are doing the home care that they ask us too.   And those are just the specialists that we have been dealing with this year.  You can see why I sometimes call myself a “medical taxi driver.”  There are days that I feel like that is all I do.  Take Ben to doctor and therapy visits, or pick him up from school because he isn’t feeling well.  Or making phone calls for follow up appointments, picking up meds, talking with the school, reporting to the pediatrician’s office, dealing with insurance, etc.

It really is a full time job. Plus there are two other children in our family and a husband. (It’s no wonder that I’m as sick as I am. )

This sabbatical is for Ben too, as well as the rest of the family.  We promised him no medical visits during our beach stay unless he decided otherwise.   This has been a long road for Ben.  He is so frustrated right now.  He hates the diet, but he is happy with how he feels on the diet. So he wants to continue it.   He’s mad at God.  He is frustrated with the medical system.  He needs to be boy and to run around and play like a kid. So this summer he is.

He is almost 14 years old.  In the last few years, we have been working on teaching him how to take care of his medical needs.  What medicine is he on?  Teaching him to engage with the doctors and ask questions.  Let him help make some medical decisions. Some day he will be on his own.  He won’t have his mom there to help.  So we are working towards that day.  But Ben’s case is complex.  He doesn’t understand everything yet.  I worry about the future.  There are times that I can’t think more than one day ahead. Planning this sabbatical a year in advance was sooooo hard. We have been living no more than six months at a time for over 11 years.

These three months mean so much to us as a family.  Hanging out more. Forgetting what our real life is like.  Trying to forget that we have a chronically sick child. So play away, Ben.  And he is.  Even though he slathers on the sunscreen, his coloring has turned from a gray color to a nice tan.

When school starts we will jump right back into our routines again. I’ve told ALL of his doctors that we will not be seeing them for three months.  So they all understood completely and were excited for our family to get away.  In August (once school starts) we will be back to the craziness.  I think he already has 5 doctor visits scheduled for September, but that is ok.  We will be ready and rested by then.


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New goal.  We leave Friday.  After Chris and Madie came back for the day to finish a few tasks at the house, Chris decided that I needed to go back to the doctor and stay another few days.  With a tropical storm brewing in the gulf, it was just better to hang at home, go see the doctor one more time, and let the storm decide what she was going to do.

The doctor said that if it is mold causing my breathing issues it would be another week at least.  If it is mono causing my issues, then it will be another 3 weeks. Yuck.  She did give me some cough medicine to help slow down the coughing, but there is no magic pill.  I just have to tough this illness out.

So mom is sick which included a trip to the ER. Ben started off the trip ill.  We have a storm brewing in the gulf very early in the hurricane season. Our family is split into two homesteads.  The truck had an incident.  The sheriff has pulled over two members of our family (not me!). Luckily no tickets.  Our newest driver hit a curb and blew out a tire.  We had a phone get dropped in the gulf.  I’m trying not to start thinking that our sabbatical is jinxed. But OMG, I feel like all of the signs are there!  Or maybe we are just getting all of the bad stuff out of the way.  Yeah. I’m sure that’s it.

I think that the storm will pass us.  Chris said that the tide was really high today.  It came all of the way up to the dunes.  Madie decided to hang out with me in Conroe.  I think most importantly she decided that she and Ainsley in the same house without mom to buffer would be a death wish for one of them.

So I have to keep trying to sit here and be still.  It.is.so.hard.  So here’s hoping for a better day tomorrow so I can head back to the beach house on Friday.

p.s.  And I pray that I’m not allergic to the beach house.

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The ideal situation would be the following:


Comfortable bed. Tv on. Crochet project in my lap ready to work. Relaxation at its finest.  That lasted a few hours, and then I started to think about all of the things that still needed to get done at the house. Laundry. Vacuuming. Dishes. I seriously couldn’t keep my mind off of it.  So as soon as my medications were on board and I had done a breathing treatment I figured this was the best time to get my work done.

There is a sense of pleasure and serenity when I’ve completed those tasks. Dang it. I love getting things done and checking items off my to-do list.  I hate the fact that I am wheezing and struggling to breath after a few hours of housework. I know I need to rest and yet am compelled to work against it.

Hopefully we will go back to the beach tomorrow. It took all day to get the medicine called into the pharmacy and then for me to pick it up.  Chris is heading back to Conroe to help finish up a few things around the house and then we will all head back to the beach.

Despite the illnesses, coming home has turned out positive.  Ainsley was able to see her friends off to camp, and she was also able to attend the Girl Scout celebration held at the Houston Aquarium for all of the girls who sold over 1000 boxes of cookies. And because she sold 1500 this year, she earned a Fujifilm Instant Camera.  It’s pink and she loves it.  Did you know that there is a printer inside and prints the pictures immediately?  And that if you shake the picture it will develop faster?  Having a new generation learn the love of instant cameras is exciting.

She and Shantell had a great time at the Aquarium.

And then on Sunday she was able to send off her friends as they headed to Lutherhill.img_6177

And now I have almost all of my chicks at home.  Tomorrow the rest will arrive to help us get back to the beach house.  In the meantime, apparently, during my convalescing my cherubs watched some scary ghost shows on Youtube. So tonight we are all together because no one wants to be left alone.


So tomorrow we will head back to the beach house. I feel well enough to go back and I haven’t had any hives in days, so I pray for continued healing.  Its time to go back so we can work on forgetting about the to-do lists, the needs of tomorrow, and worries of today.

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As many people know our family, with the gracious help of two parishioners who applied for the grant to pay for all of this, has been planning this sabbatical for over a year.  Two months in a beautiful beach house right on the gulf and then several weeks of travel.  The details have been planned to the nth degree.  It was such a precious gift to reconnect with our family, slow our pace down, avoid all unnecessary medical visits for Ben, no schedule but to relax.

But instead of the beach house, I am home in Conroe.  “Wait, what?” you say.  I swore I would not be coming back here for anything.  Chris could come back if he wanted to, but I was staying put at the beach house until our very last day.

I am home because I ran myself ragged for years.  I am home because I didn’t spend any time on myself.  I am home because I have put everyone else before me and never got around to taking care of myself.

I finally slowed down, and my body decided to revolt.  Now the lesson I am learning and sharing is not that you should avoid slowing down.  The lesson is that if you leave yourself on the back burner for too long, you get scorched.

After the first week at the beach house, I started to feel like I had the flu.  Chills, fever, cough, etc.  Typical flu.  I thought that what a better place to convalesce then at the beach.  Isn’t that what the Victorians did to better their health?  I imagined aristocratic doctors prescribing a seaside vacation to breathe in the fresh salt air.  (Fever+vivid imagination = current story line).

Then one night I woke up covered in hives from head to toe and struggling to breath.  I woke Chris up and he “kindly” drove me to the ER.  A few hours later and a good amount of iv drugs on board, I had a diagnosis of Mono, Acute bronchitis, Acute allergic reaction, and pneumonia.  It was like my immune system blew up in my face and quit working on me.

After another few days of my symptoms getting worse and not better, I decided I needed to go home and see my family doctor.  My current drug regimen was not working and the hives were psychologically killing me.  I had hives on my face, in my hair, covering my whole body including the palms of my hand and the soles of my feet.

My doctor looked me over and said, “I think that you are allergic to something in your beach house.” Nooooooooo!  This is a brand new house.  If I am going to be allergic to anything it is going to be my home in Conroe (which I love).  My almost 45 year old house that is probably full of lead paint, asbestos, animal hair, 40+ years of dust and living should be making me sick not the beach house.

Regardless of what the root cause of my illness is, the lesson I am learning is this.  Slow down. Rest. It is ok to say no to someone.  The world will not think less of you if you do.  I am not teaching my children to be responsible adults by enabling their forgetful behavior.  My home does not need to be perfect, and I should not feel totally responsible for making it better when many hands went into making it messy!

I keep looking at this summer as our last chance to truly hang out as a family.  Madie is a sophomore in high school, and the other two are both in junior high next year.  How many more chances will we have?  I am already missing my children and they haven’t even left the house yet.

So here is what I have learned so far on sabbatical:

  1.  Do not wait for the perfect moment to make memories.  Make memories along the way.
  2. Take care of the caretaker or she can’t take care good care of anyone else.
  3. Be in the moment.  Stop thinking about what you might soon have or might soon lose.  Being present for yourself and for your family is most important.

Right now I am home.  My hives are starting to finally fade.  (Thank, God!)  Our plan is for me to stay here until Monday and try to get better.  If I go back to the beach house and start to get sick again, then my doctor is right and it is environmental.  If I go back to the beach house and continue on the road to recovery, then it will be more talks on the porch with my husband, more walks on the beach with my kids, more time on the lounge chair reading one of the 200 books I brought with me, and more time spent discussing with the kids on Daddy going kayaking and their worry about him flipping, running into sharks, getting lost, dropping his phone, etc.  That sounds much more fun then sitting here, so I think I will just follow that plan.

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