Eat Happy!

Eat Happy!

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Monday, September 26, 2016

The Final Chapter



It has been 22 months since my last blog update.  While there will be small resource updates and the sporadic “how’s it going” blurb in the future, today I type the final chapter.  I have waited until now because school, jobs, and our new home have finally aligned.  I am tying the final strings together.   So much has happened in the last 22 months that I can’t even find a good place to begin.  We’ve lived an amazing 22 months.  I initially thought this would be an incredibly long post.  I soon realized that it’s a long post mostly because of photos of our lives over the last 2 years.  A post told in photos.  A post about how our lives have been pieced back together.

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OCTOBER 2014

Removing the G-Tube

Shortly before the last post, October 3rd 2014, to be exact… Ian’s G-tube was removed.  This happened very suddenly.  We showed up for a routine GI appointment at The Children’s Hospital of Philadelphia.  After discussing the previous several months, our GI said he thought it was time.  Tom and I were both stunned that he not only meant time to come out… but time to come out, NOW!  We took a few deep breaths and out it came.  Tom deflated the button, and I pulled.  We had his final button disinfected and made into a Build-A- Bear.  We did this with his first one and thought it very fitting to close the chapter by doing the last as well.  We even dressed them in his preemie clothes.
 
Deflating the balloon

Pulling out the tube

All gone tubie!

First tube and final tube in Build-A-Bears

Over the next few weeks, the stoma was supposed to close on its own.  It never did close because his tract was so well formed from three years of use.  We tried a lot of home remedies to heal the stoma.  Ian needed to have the site surgically closed.  Tom and I were perfectly ok with that.  Dare I say we even wanted it closed that way?  His scar, now almost two years old, is barely noticeable and amazingly seamless.  CHOP did an exceptional job (as always) in closing the tract in multiple layers.  The toughest part was managing the nausea from anesthesia on a three hour car ride home.

This photo was taken a few days after the surgical close.  This was a huge moment.  We were finally finished with the tube!

G-tube closure

ComfyLift Bed

We also received a new twin-size ComfyLift bed for Ian.  He had completely outgrown his toddler-sized mattress.  Fortunately, we didn’t have any trouble getting a new one covered.  It initially sat on the floor until we could purchase him a new bed.  ComfyLift beds help manage his chronic lung disease, reflux, digestion/gastroparesis, sleep apnea, and periodic limb movement disorder.  Ian sleeps very soundly in this bed and we notice a big difference after a night or two without the bed.

Twin-size ComfyLift bed

Halloween

Ian chose to be Olaf in 2014.  He had a lot of fun walking around trick-or-treating in the neighborhood.  He made smores with friends and even ate a few pumpkin seeds.  I’m probably the only mom who sits and stares at their child eat candy!


Olaf is tired!

NOVEMBER 2014

Routine Eye Appointment

Ian visited the Ophthalmologist for his annual checkup.  His eyes were developing very nicely.  At four years old, he was measuring at five years (R eye) and six years (L eye).  At seven years old, the eyes are fully developed.  This is when 20/20 vision can be fully reached.  Ian was actually ahead of schedule.



Thanksgiving

It wasn’t long before the holidays rolled around.  Ian enjoyed helping in the kitchen and baking.  He was also able to eat a full plate of dinner…. twice.  After visiting with both Tom’s and my parents, Ian’s little belly was very full!  We were so proud of him.  I’m pretty certain I just sat and watched him eat, all day!  At the end of the evening, Ian ate a piece of Grasshopper Pie.  A family favorite!

Delicious!





DECEMBER 2014

Christmas

Ian had a wonderful 2014 Christmas!  He had fun shopping for his family, friends, and teachers at Dollar Tree.  He wanted to pick out his own gifts, from him, for each person.  It has become a tradition.  He also was able to participate in the family tradition of country-ham sandwiches and my Nanny’s noodle soup.  We have this every year on Christmas Eve, after church.  Ian had a hard time initially with the country-ham… but the soup went down real easy!


"Bello!"

As 2014 came to a close, we realized that Ian only had 58 retching vomiting episodes that year.  That is a huge drop from the 380 episodes in 2012 and 280 episodes in 2013.  He was making huge progress in his body’s ability to manage digestion, reflux, and motility.  As Ian was getting older, he was able to make better decisions about when he was hungry, and how much he wanted.  He was growing well and we finished the year strong.

JANUARY 2015

Florida

We started the new year by visiting Tom’s grandparents in Florida.  It was nice not having to travel with so many bags and supplies.  We made the drive, without being clogged with feeding bags or medicine cabinets.  Ian had dropped most of his meds and we were really only carrying around respiratory equipment and growth hormones.  He had a lot of fun playing on the beach, visiting the zoo, and enjoying the warm Florida weather.

Sand time with Daddy

Feeding the giraffe

Time for donuts!
Orthotics

Ian received new orthotics later on that month.  This would be his last pair of Sure Steps with Velcro and pieces wrapping the ankle.  We have been visiting the same Orthotics practice since his was very little and they always do an excellent job.  Ian picked out purple Velcro with skateboarders.


FEBRUARY 2015

We visited the National Aquarium in Baltimore in February.  We made a day trip with friends and had a great time watching the fish, dolphins, and rainforest animals.

Watching the dolphins

Valentine’s Day

Ian’s class at preschool had a Valentine’s Day party.  Ian enjoyed cookies and some sweet treats.  At home, he and Tom made pink, heart shaped pancakes for breakfast.  He is getting really good at cracking eggs and using a knife.


Helping make strawberry pancakes

Growth Hormones Stopped

We stopped giving Ian growth hormone shots the end of February.  His Endocrinologist had mentioned to us in the winter that if he was continuing to do well, to stop them in Feb.  We finished Ian’s last sticker reward board and just like that, they were gone!  We kept the sticker boards for a while… but after some photos, they too disappeared.  Ian has been growing just fine without them and his organs are continuing to mature without the added hormones.

The final countdown!

MARCH 2015

Beads of Courage

As Ian was beginning to wean down from all his medications, clinic visits, and hospitalizations… we felt it was time to end our journey with Beads of Courage.  Ian has well over 1,000 beads to show his journey and make something beautiful from all the needle sticks, surgeries, medications, tube feedings, and so much more.  The beads now sit in a large glass jars, separated by layers, on top his bookcase in his room.  They bring such emotional memories with them… but always remind me that he is our miracle.

Ian’s final bead is the purple Signature Heart.  This bead represents the Completion of Treatment… or as in Ian’s case… the stable management of a chronic illness.  He posed with all of his beads shortly after.




APRIL 2015

Cherry Blossoms DC

We made our first trip with Ian to the Cherry Blossom Festival in 2015.  It was a beautiful day and Ian truly enjoyed pointing out all the colors of the blossoms.  The dark pink ones were his favorite and we walked around trying to find as many as we could.  They are the least common.  He sat by the water and fed the ducks while the wind blew blossoms everywhere!  Another great day trip!

Cherry Blossom Festival 2015



Discharge from Children’s Hospital of Richmond Feeding Clinic

Quite possibly the biggest event of this month was Ian’s feeding clinic discharge.  We had been on monthly and even quarterly visits for some time prior.  This was the last clinic appointment in Richmond.  The clinic has been one of the key components in Ian’s progress.  He is one of their true success stories and we are forever thankfully for their knowledge, caring, and patience.  We think of them almost every time Ian eats something.  I will often find myself thinking…. Wow, your CHOR friends would be so proud of you right now!!

Final clinic appointment

Going home!

Easter

Ian loved helping in the kitchen on Easter.  Tom’s side of the family makes special Easter cookies and Ian had a great time rolling them and painting icing on top.  I think adding sprinkles was his favorite part.  He hopped around like a little bunny finding all the eggs he could and enjoying the chocolate in his Easter basket.


Silly Rabbit!  Trix are for Beans!

Valgus Reassessment

We had Ian reevaluated for his valgus the end of April.  Ian’s “knobbly knees” seemed to be worsening and we wanted to make sure we were traveling down the right path with his orthotics.  The doctor said that Ian’s valgus actually isn’t that bad…. But since he is still small and very lean, it looks a lot worse.  This was a big relief.  Ian no longer complains about his feet or knees hurting, so we’re doing something right!


MAY 2015

CHOP GI Discharge

This was quite possibly the biggest event in Ian’s medical journey progress.  Ian was officially discharged from the GI service at The Children’s Hospital of Philadelphia.  This was the moment every family imagines (and ironically dreads).  I say dreads because the umbilical cord to your GI safety net is gone.  While we do still have them as contacts for follow ups on as as-needed basis… they are not scheduling regular follow ups for him.  The idea of knowing we no longer “needed” a GI to help us was completely mind-blowing.  It felt amazing!

Dr. John Boyle ~ The Children's Hospital of Philadelphia


The nerves set in pretty quickly for me.  Always waiting for the other shoe to drop… always waiting for the hernia to enlarge… always waiting for the vomiting to ensue… again.  As time went on, Ian continued to progress and things began feeling a bit more natural.  Ian continued to grow and make good feeding choices for himself.

March of Dimes

May brought another walk in honor, and in memory, of premature babies.  It brings back tough, but loving memories of Ian’s early days.  Seeing the babies and hearing the stories are never easy.  I often thought the farther away I got from Ian’s past, the easier it would get… but it is actually the complete opposite.  The farther behind us it is, the harder it is to go back and look.  Being with the “March for Babies” helps me remember what it was like that very first time.  We had the opportunity to reconnect with some of Ian’s nurses from the hospital NICU.  It was very sweet to see them together again.

Reston, Virginia March for Babies 2015

JULY 2015

Lake George, NY Vacation

This was our second trip with friends to Lake George.  Ian had an amazing time splashing in the water and playing in the sand down at the pier.  I have to admit that it was pretty nice, for the first time, not having to deal with tubes and vomit in the sand!  Although I still instinctively protect the button when he gets in and out of water rafts and slides belly first in the sand.  We even got him eating hard shell crabs!  He’s got a lot of Maryland in his blood!!


Maryland Blue Crabs... YUM!

Pneumonia

The downside to things going so well……. When they do take a turn for the worse, it’s extra disheartening.  Shortly after our trip to Lake George, Ian was in the hospital with Pneumonia.  It turns out it was Mycoplasm Pneumoniae, an antibiotic resistant bacterial lung infection.  It was miserable.

While in Lake George, Ian may or may not have aspirated a small amount of water while jumping in.  No one is sure if this contributed to the infection or not.  It is thought it may be link, but cannot be pinned as a cause of the problem.  The x-rays showed a small cell in the lower left lung.  We had been doing nebs at home, but it was not enough.

Once admitted, they immediately started him on an eight hour (continuous) Albuterol neb.  We were quickly moved from PICU to a general floor a few hours later.  Ian’s oxygen levels were doing well, but dropping quickly when he was weaned off the oxygen.  At this point in time they did not know about the Mycoplasm.  Tests and swabs had been done and all we could do was sit around and wait.

Overnight, Ian just about lost it.  We have known for years that Albuterol can make you jittery… even all over shaky.  What we did not know is that an eight hour continuous pure Albuterol neb will turn your sweet, loving, sick child into a demon that bites, hits, and yells.  He was unable to sleep and would wake every 10-15 minutes.  No one told us that there can be intense behavioral side effects with continuous Albuterol.

The nurse was able to get some approval for Benadryl to help calm and sedate him.  Tom and I both knew this was a lost cause.  Ian had been on an adult dose of Benadryl four times a day for the last four years or more.  A dose of Benadryl was going to be like telling him “Go to sleep now sweetie.”  Nonetheless, we had to follow the “steps” of protocol.  So as Ian was kicking and screaming, we gave the Benadryl.  It, of course, did absolutely nothing!  The nurse looked perplexed… Tom and I did not!

Around 1:00 am, Tom and I hit our limit.  We had been in isolation because of the unknown cause of the Pneumonia.  The time had come… I couldn’t hold it in anymore.  I had been trying to lie in bed with Ian and comfort him for hours while he kicked and screamed incessantly.  I told Tom to march right down to the desk and ask for the Attending.  I proceeded to have a huge breakdown in the hospital bathroom.  I shut the door and sat on the shower floor and cried so loudly I couldn’t hear the nurse.  I was crying loud enough to drown out the noise of my child thrashing around in the bed, inconsolable by my love and snuggles.

The nurse gave me a mask and escorted me down the hall and into a conference room while Tom took care of Ian.  She let me stay there for quite some time while I took the moments to quiet myself and settle down.  I could hear Ian screaming around the corner, down the hall, six rooms away, with the door closed.  I felt horrible for the other children and families trying to sleep.  After about 20 minutes, I walked back down to the room.  Ian had settled a bit again. 

The Attending arrived pretty quickly after that and we told him this was unacceptable and that something needed to be changed immediately.  Ian was not sleeping and was becoming violent with the nurses.  He told us that the Albuterol was to help clear his lungs and it was pretty apparent to all of us that they were clear now!  He stopped the continuous neb.  He offered a dose of Valium for Ian.  He seemed a little apprehensive about it and said a lot of parents chose to not do this and ride out the Albuterol.  We were not those parents!  Ian had the dose of Valium and was asleep in 15 minutes… for the rest of the night (as were Mommy and Daddy)!  Amen!



As the days went on, we continued to make progress.  Despite Ian’s struggles, he managed to keep a smile… once we were through with the Albuterol.  The tests all came back negative, even the Mycoplasm Pneumoniae nasal swab.  We went home a few days later and Ian continued to slowly recover.  We were sent home with heavy antibiotics.  We followed up with the Pulmonologist the day after discharge who told us the Mycoplasm Pneumoniae blood work came back positive.  He started Ian on two more round of heavy antibiotics to clear the infection.

A few weeks later at another follow up, Ian’s lung tests continued to show improvement.  All in all, it took 9-12 months for Ian to make a full recovery.  He seems to be back to his baseline lung function now (September 2016).

INOVA Fairfax Children's Hospital

AUGUST 2015

Endocrinology Discharge

It had been six months since we stopped the growth hormones when we followed up with the Endocrinologist at CHOP.  Despite his illness in July, he was right on track and growing exceptionally well.  His linear growth and growth curve were following along exactly where they were when he was getting the hormones.  He decided Ian was ok to stay off and we haven’t been back since.  The Endocrinologist discharged him from his service!


Ocean City, MD Vacation

We made a final vacation at the end of the summer to the beach.  Ian had a great time in the sand and water.  He played some mini-golf and had loads of fun at the Boardwalk rides.  We made two trips!

Ocean City Putt-Putt

Trimper's Rides

Trimper's Rides Ferry Whip


SEPTEMBER 2015

Pre-K

Ian started his Pre-K class with his friends at the preschool.  He was turning five the week he started, but wasn’t quite ready for Kindergarten yet.  It was a good move holding him a year.  It gave us a chance for him to mature, and to make sure things were under control with his health for another year before moving on.  He had a blast with his friends.  He loves to read!


OCTOBER 2015

I took Ian out to play in the leaves for a fall photo shoot right before Halloween! 





Halloween

Ian dressed up as Marshall from Paw Patrol for Halloween.  He absolutely loves Paw Patrol and has accumulated quite the collection!


NOVEMBER 2015

Thanksgiving

Ian had another great year of helping prepare, bake, and eat Thanksgiving dinner!  He is getting to be such a great chef!


DECEMBER 2015

Christmas

Ian really enjoyed Christmas this year.  It was the last Christmas in the townhouse… which was up for sale.

Hard to believe he used to fit in this stocking at 5 pounds





JANUARY 2016

House for Sale

We decided to put our townhouse up for sale in September.  This is the house we bought right after Ian’s tube was put in.  When they did the initial surgery, it changed our lives so much that I quit my job and we had to sell our beautiful home.  We had made another beautiful home in the townhouse.  Over the years, as Ian continued to improve, and we continued to save, we were able to sell the townhouse and buy another single family home.  We had an offer come in October and had a long settlement in December.

We continued to rent back from the new owner until the end of January.  We had not yet found a place to buy when the time came to move out.  We rented an apartment nearby and were going to put most of our things in storage until we found a place to live.  We were supposed to move out on January 23rd… but the Jonas Blizzard came through the 22nd-24th and destroyed that idea entirely!  We ended up moving out the following weekend and settled into the new apartment over the next few months while we searched for a new home.  Saying goodbye to the townhouse was hard… but it was exciting looking for our forever-home.




FEBRUARY 2016

Eye Doctor

Ian had another routine eye doctor visit this month.  Everything is still going well and he is looking cuter than ever in those cool shades!

Hollywood!

MARCH 2016

Buying a House

Another month has come and gone living in the apartment.  We finally found a house and our offer was accepted.  It has everything we wanted and more.    The most important things on our list were a big backyard, a big bedroom for Ian, and a nice front porch.  The house had three offers over the first weekend and we were thankful they chose our family.  We settled in May.  We were able to paint the shutters black and the door red later on in the summer.  A white house with black shutters and a red door has always been a dream of mine.  The front porch looks even more beautiful now.

Settlement Day

APRIL 2016

We had a pretty busy April of unpacking boxes.  The house was starting to come together and our “living out of boxes” was still an everyday occurrence.

Dental

Ian’s only development was his new Sonicare for Kids toothbrush.  This may not seem like much to the average person.  As a dental hygienist, it’s a big step in our world.  Ian has been using the Sonicare for Kids (since age 2.5) with my guidance.  They now have an interactive Bluetooth brush that has all kinds of fun things with a new character named Sparkly.  Sparkly brushes along with you and has fun games and “dress-up” outfits that you earn by brushing.

Ian has always been at high risk of erosion from the acid over the years.  The acid from all the reflux and vomiting can destroy enamel.  Fortunately, by the grace of God, Ian does not have any erosion at all, despite vomiting over 1200 times since birth (yes, I have medical records)!  I am extremely thankful for my knowledge of dental care so early on.  We started from day one with xylitol and protective measures to keep his mouth healthy.  The only residual trouble he struggles with is hypoplasia.  This is when enamel doesn’t form quite as it should.  Since Ian was fairly malnourished during the time his baby molars were forming, they didn’t develop 100% correctly.  This would be age 15 weeks until 11 months or so.  The top part of the tooth (what you see in the mouth) is slightly mottled and more prone to decay.  We have to be extra diligent to make sure he is brushing twice a day and using fluoride.  He has been using fluoride since he was two.  We’ve been able to closely follow his dental care, but Sparkly helps!


Sparkly

MAY 2016

Graduation

Ian graduated from his Pre-K class this month.  He has been attending the preschool for four years.  We started him early to be with children who were eating and talking.  His peers helped him see what typical behaviors were and helped him communicate with others.  Being an only child at home, becoming a part of a classroom helped him develop a lot of skills.  Here are his first day and last day photos.  It was a tearful moment.  We’re very proud of him.

First day 2012
 
Graduation Day 2016

Moving

The rest of May was filled with packing and boxes.  Getting everything into the new house took about a week…. But we got there!  We moved right before Ian’s graduation.

Ian's playroom


JUNE 2016

Orthotics

Ian graduated from his Sure Step SMOs.  His new orthotics are inserts designed to help his pronation and valgus.  The inner arches of his feet still collapse from hypotonia (low muscle tone).  They may be this way for quite some time.  He started wearing orthotics at 27 months.  His new orthotics are called Chipmunks and are super cute.  He is able to take them in and out of his shoes all by himself.


JULY 2016

Playset

Tom was able to finish putting together a great playset for Ian.  He and the Dads worked hard for about a month on evenings and weekends to get it finished.  It took a lot of hard work, but Ian and his friends are having a great time enjoying the backyard and playset.


AUGUST 2016

Pulmonology

Ian had an appointment with the Pulmonologist to follow-up.  Ian’s residual trouble from the Mycoplasm Pneumoniae last July has finally resolved.  He still has chronic lung disease from all the trouble when he was younger.  At least the Mycoplasm Pneumoniae had moved on and he is breathing well.  We didn’t have trouble with allergies in the spring or summer and it seems Ian’s asthma is mostly aggravated by exercise and illness.  He was able to stop the daily steroid pro-drug inhaler and is just using emergency meds as needed.  His Pulmonologist feels that Ian has reached his baseline respiratory function.  And while function is below normal, it is stable and he is doing well.  Here are some photos of Ian over the last year working with his respiratory function.

Check is oxygen with his Pulse-ox


SEPTEMBER 2016

Most of August was spent enjoying the new yard and the new house.  It has been wonderful having friends over and having a great time with our family.  Ian’s 6th birthday was September 3rd and we were able to host two great parties for him.  He had a large group of friends over and I still don’t know how they all managed to fit on the playset… but kids will get it done!  Celebrating in the house was a feeling I never imagined.  There were lots of happy tears. 

Birthday



Kindergarten

There were more happy tears the day he started Kindergarten.  He was all smiles and wanted to walk into the school and find his classroom all by himself on the first day.  Part of me wanted to hold on to him and protect him, as I always have.  But another part of me knew it was time to let go.  I’ve spent his whole life being worried about him every day.  He was such a big boy that day and it was a very rewarding moment to see him venture off into the school with 700 other children on his own… excited.







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Fun!

Ian has been able to enjoy a lot of things over the last couple years that we thought he may never be able to do well.  There was so much uncertainty when he was born and he continues to amaze us each day.  He loves to cook and bake and even wash dishes.  He had a great year in gymnastics and now enjoys swimming.  One of his favorite things to do is read.  Seeing him silently reading in his room, or read to his stuffed animals always makes me smile.  He enjoys visiting the library, going to baseball games, and even just running around outside.




Playing in the rain


My little Superman

In June, Ian had a chance to meet the Obstetrician who delivered him.  He always remembers us and meeting Ian was an emotional moment.  Seeing them together gave me a strange sense of closure.  He was there when it all started, and he was able to see him as things were medically coming to a stable time when he is thriving.



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We’ve spent so much of the last 6 years wondering if Ian is going to have pain, not be able to do the things kids do, or end up back in the hospital.  While those things are still a possibility in the future, his stability over the last two years has instilled a sense of peace that things can be, and will be, alright… no matter what.  It feels like our fairy tale has come full circle.  We’ve made huge sacrifices over the years, but they’ve all been worth it.  We’ve finally pieced things together to what has now become our new normal.  It may not be where we imagined we’d end up, but it’s everything we’ll ever need.  We have a beautiful home, a healthy child, and a happy family.  I know there will be speed bumps and obstacles to tackle… but for now, life is peaceful and we are soaking up every day.

Thank you for being a part of our journey.  I could have never imagined Ian’s story would travel so far, or attract the attention of so many.  Our goal was always to attain the right knowledge, the right doctors, and the right treatments for our son.  It just so happens that we were able to find an avenue to share all of this with others… both our story, and our resources.  Medical knowledge and care is so difficult to obtain sat times, and anything we can do to guide others to possibilities is a step in the right direction.

Each day, as I give thanks for our progress, I pray for those still struggling with the daily weight of an unhealthy child.  The images of floors lined with towels to catch the vomit are still too vivid in my mind.  The vision of him arching in pain as an infant still brings tears to me eyes.  Sometimes I even dream about the middle of the night feeding alarms going off on the pump or the hospital beds.  For those of you still present in this stage of the journey… just keep going.  Remember that steps forward come with steps backward… baby steps.  Each doctor that is willing to help is another step.  Each test providing either happy or sad results is another step.  Each surgery is another step.  I’m also reminded of the children who were not able to overcome their medical struggles and are peaceful and healthy as angels.  May they look over the children still struggling and hold them in their times of need.

Remember that no matter the child’s medical advances, success is measured in a place of love and peace.  Each child and family will find their own path to peace.  Thank you for being a part of ours.  I never thought I would be able to hold so much love in my heart.

Love,
The Rohr Family

September 2016



























































































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