Halloween

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With Halloween a mere three days away, it is time for me to explain why The Teal Pumpkin Project is so important to our family.

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Anyone who has been reading this blog or knows our family, understands that Brian suffers from multiple food allergies.  One of his worst, requiring us to carry an epi pen and steroids wherever we go, is dairy, but soy is not far behind.

Although Brian has been diagnosed with Eosinophilic Esophagitis (EoE), food allergies, and potentially Chronic FPIES, these are only a few bricks in the massive institution that makes up food allergies.

In fact, my niece suffered from FPIES the first couple years of her life.  Potentially life-threatening reactions occurred whenever she had anything with rice or oats in it. Thankfully, she has outgrown the condition, but that cannot be said for millions of children around the world.

The Teal Pumpkin Project was launched just last year.  Being new to the world of food allergies, I jumped on the chance to provide a safe alternative for children like Brian.  While my intentions were good, the execution was the not the greatest.

I had no idea how hard it would be to find a teal pumpkin (I thought for sure a plastic one would be found at Target or Walmart).  With Halloween drawing near, and feeling defeated, I purchased a fake pumpkin and some teal spray paint.  It may not have looked great, but it served its purpose.  I also bought a special container and filled it with “non-food” treats like vampire teeth, spider rings and miniature tubs of Play-Doh.

Essentially, that is what this program is about in the simplest terms.

Not all children can enjoy candy for any number of reasons.  Anyone who has a child in school knows that most schools have put a kibosh on ANYTHING containing nuts.  The same caution has to be used when selecting Halloween candy.  Otherwise, millions of children end up disappointed at the end of the night, skip Halloween altogether, or worse yet, suffer sever allergic reactions.  The Teal Pumpkin Project offers alternative “non-food” options for children so that they can have a Happy Halloween with the rest of the trick-or-treaters.

Last year Brian missed out on Halloween because he had his first endoscopy and colonoscopy earlier in the day.  The year before that he was too young to have any idea what was happening, and I gladly took the few pieces of candy he received.

I want this year to be different.  I want Brian to enjoy trick-or-treating as much as his sister.  I want him to be able to take pleasure in the “treats” he receives, just like any other kid.

Although it was new last year, (pretty sure we had the only Teal Pumpkin in my friend’s neighborhood) the movement has taken the world by storm.  FARE’s website (Food Allergy Research and Education) encourages households to “Take the Pledge” and even has a map showing areas across the US who are participating, with almost six thousand signed up so far.

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Of course, there are thousands more who have not signed up on the site, but have done their part to spread the word.

Stores across the US are selling Teal Pumpkins (by the way, a Teal Pumpkin is the universal symbol now that you are offering a non-food alternative) and various organizations, like Trunk or Treat groups, are encouraging participants to include a Teal Pumpkin and alternative options.  The media has caught on to the growing support and featured the story on news stations in multiple states.

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Although Brian and I will not be participating in our Annual Halloween Traditions, I know that our friends and family are leading the charge for us at home.  My “second mom” has assured me that a Teal Pumpkin is ready to go and Matt has an array of items to pass out to trick-or-treaters.

All this being said, I am not against passing out candy.  In fact, a bowl of candy will sit right next to the non-food bowl.  I humbly am asking for you just to remember children like Brian when you purchase your candy this year, and maybe pick up a few fun items to hand out also.  Party City, Dollar Tree, 99 Cent Store and Oriental Trading, among many others, offer great prizes for minimal cost.

It may be an extra $20 out of your pocket, but the rewards are priceless if you can help keep Halloween fun for all kids.

Even though Halloween is approaching quickly, if you can find the time to paint a pumpkin teal and pick up some non-food items, you will have my eternal thanks.  In fact, I encourage you to share pictures of your Teal Pumpkin if you do participate.  I know I will make sure to take a picture of every Teal Pumpkin I see while out with Brian.  Hopefully, we will not be disappointed.

Also, as a side note, if you find yourself searching for a last-minute costume, I encourage you to shop at Spirit Halloween.  At Children’s Hospitals across the country, Spirit sets up a “fun area” where inpatient children can pick out a costume, goody bag, toys and do crafts.  Although Brian was not able to leave his hospital room when they were at CHOP, I was able to pick him up a police officer’s costume.  It is an amazing program, and brightens the faces of the patients.

Brian and I continue to prepare for Halloween’s arrival.  Our hotel room has tiny pumpkins in it (safe as long as he doesn’t touch the insides of the pumpkin), and I have a few costume options available for him to choose on Saturday.

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I always have enjoyed Halloween, and with The Teal Pumpkin Project’s growing awareness, I am optimistic that Brian will too.

Human

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I fell to pieces tonight.

I’m not writing this because I’m looking for attention or I want people to feel sorry for me.

I’m telling you this to show that I am human and, maybe, to show other parents it is okay to fall apart too.

After Brian was released from the hospital, I tried to go back to our daily routine, but I was tired.  We went to a meeting on Sunday and then we didn’t leave the hotel again until Thursday evening when Mr. Thom invited us out to dinner.  I’m embarrassed to say we didn’t even get dressed during those four days.

To overcome the guilt I was feeling about keeping my son inside for days on end, I decided to take him to a pumpkin patch today.  In fact, on the drive there I was scripting my next blog post about pumpkins, Halloween and the Teal Pumpkin Project, but that will have to wait for another day.

Brian had a great time today and was not nearly as bothered by the big kids who knocked him down as I was.  I think he just enjoyed the chance to run around free, and of course, the slide.  He loves to slide.

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We headed to the FOP for dinner.  Along the way I began to feel a huge heaviness coming over me.  I want to smile, I want to appear everything is great, I want to act like I have it all together, but the truth is, I am so tired.

I’m beyond the “tired” because I haven’t slept right for a few days.  I feel cranky and irritable, and most of all, I hate myself for feeling this way.

I know how lucky I am to be blessed with so many family and friends who love us.  I know how lucky I am to spend so much quality time with Brian.  Please do not think me melodramatic when I say, I just need a break.

Also, I can say honestly that the last four months have been hard.

I love my family and my babies more than life itself.  They make me whole.  Still, I have come to the realization that over the last few months, I have lost myself.  I am Brian’s mom, which is the greatest honor, but I’m not afraid to say that I also am looking forward to being alone with myself soon.

I thank God for blessing me with Matt.  He reassured me tonight when I felt like I was being a bad mom for wanting time to myself.  I needed him to bring me up, and that is just what he did.  I love him more than he knows.

When Brian and I return home on November 20, I will be grateful for the opportunity to sneak out by myself, even if it is just to sleep without interruption.

I hope you don’t think I am an ingrate or being selfish.  For those of you who are parents, I hope you know that you can love your children with all your heart, and still want to be seen as more than just a mom, or in our case, the mom of child with a rare disorder.

Being a parent really is one of the hardest jobs in the world.

I also know that this is temporary.  Tomorrow I will wake with a clear head and a renewed strength.

Brian is my number one focus and priority.  There isn’t anything I wouldn’t do for him.

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Thank you for following our journey and forgiving me for this minor bump in the road.

Three Weeks

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The last three weeks have been full of ups and downs, and full on attacks.

It seems like forever, but really it was only three weeks ago that we last met with Brian’s allergist for another round of skin tests and blood work.  The second set of skin tests confirmed an allergy to beef, tuna and corn, and the blood work confirmed his allergy to milk.

I left that appointment with the plan to feed Brian apples, pears and carrots over the next six weeks to prepare for his follow-up endoscopy on November 6.

I was fortunate to have my mom come visit for my birthday.  It rained non-stop for a few days while she was here, but luckily we were graced with a beautiful day to sightsee around the neighborhood where my grandparents grew up.  Brian was his normal self all day and seemed to want to run around more than anything.

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It was that night/early morning when things took a turn for the worse.

Brian woke up around two in the morning asking for a bottle.  I could tell he was on fire and grabbed the thermometer.  His temperature was 103.2.  Since he has a horrible aversion to oral medication, I gave him an acetaminophen suppository and he fell back asleep.  We awoke early to take my mom to the airport, and this time his temperature was 105.5.

Brian wasn’t crying or fussy or even lethargic by a normal definition.  But like my mom said, he was just off.  He was very calm and quiet when he spoke and cuddled a little more than normal.

It was 6a.m. and we were headed towards the airport.  I knew I was going to end up in the emergency room because I didn’t have many other options.  My mom told me to detour, and since she was flying standby, would figure out an alternative flight once the doctors gave us some answers.

I always find it eerie to see an emergency room empty, and that is exactly what we walked into.  We were seen immediately and Brian’s temperature was registering high still (I hate when my thermometer gives a reading and it is much lower at the hospital, but thankfully that didn’t happen this time).  The doctors did a quick exam and told the nurse to give him Motrin.  After wrapping him in a sheet and having the medicine spit back at her, the nurse finally agreed to my suggestion of suppositories.  They gave him a stronger dose than what I had on hand at home and said they would let him sleep for a little while.

During this time, Mr. Thom (my most favorite Philadelphian) came to my rescue and sent someone to take my mom to the airport.  I know she hated leaving while we sat in the ER, but I didn’t want her to be late arriving home.

After seven hours, the doctor said she wanted to see Brian walk around, which he did with ease.  She discharged us with a prescription for acetaminophen suppositories, and assured me that Brian would be fine.

Here is where I should mention that I was battling my own sickness during this.  Without sugar coating whatsoever, it is safe to say that I felt like crap.  I was grateful to be heading back to the hotel, where Brian and I crawled into bed and watched movies.

That evening, Brian’s temperature began to rise.  I knew I was not in any shape to try to walk to a pharmacy, so I turned to the front desk at the hotel.  This place is amazing.  I asked for a pharmacy that delivered, and without batting an eye, the front desk hostess offered to walk to CVS on her break and buy the medicine for me.  You have no idea how relieved I was.  And, as it turns out, very lucky.

That night, with medicine in hand, I battled a fever once again.  I was able to keep it somewhat at bay, and by morning, it seemed to have broke.  Unfortunately, that is when the diarrhea started…black and lots of it.  After the diarrhea came vomiting that looked like coffee grounds.  After the third time, Brian’s temperature began to rise, and I knew it was time to head back to the emergency room.

Here is where I should apologize to my boy.  If I had been feeling 100%, I would have thrown him in the car after the first vomiting episode.  Instead, I enjoyed the chance to sleep most of the day with him by my side.

We arrived to another empty ER and were taken back immediately.  Right after I placed him on the bed, Brian began to throw up, which turned out to be a blessing.  We were able to catch most of it in a bucket and the nurse confirmed through testing that it was blood he was throwing up.  Of course, I was not feeling like mother of the year when I thought back to the amount he had thrown up throughout the day already.  Confirming that it was blood just meant I knew I should have brought him in sooner.  The nurse took his temperature, which was 106, and alerted the doctors.

Immediately people sprung into action.  Before I knew it, Brian had medication, blood taken, and an IV placed.  Even before we knew the extent of what was happening, the doctors made it clear that we would not be leaving the hospital.

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When the blood tests result came back, it showed that Brian’s blood glucose level was 47.  In case you are not familiar with the range, this is EXTREMELY low.  They ordered a bolus of dextrose (sugar in an IV bag) to bring his level back up.  After two boluses of dextrose, Brian’s blood glucose was 147.

An hour later, we were moved to our room and Brian’s nurse checked his blood sugar again.  During this short period of time, his level fell to 29.  The pediatric attending felt it was best to keep Brian on the dextrose through his IV, and told me someone from the endocrine department would be down to see me the following day.

After a very rough night, I did my best to maintain composure while multiple specialities came in and out of our room.  Brian was seen by gastrointerology, allergy, endocrine and pediatrics.  They came to the conclusion that he was suffering from a GI intestinal virus and that GI and allergy were no longer needed.  Endocrine wanted to figure out why Brian’s blood sugars kept plummeting, so they ordered a 24 hour fast to be completed once his fever had broke for twenty-four hours.  (Their concern also came from Brian’s blood sugars falling very low after his endoscopy.)

The realization hit me that we were going to be hospital residents for some time, and my clothes were beginning to take on a life of their own.  Once again, thanks to the amazing front desk hostess at our hotel, a bag was put together for me, and Mr. Thom was gracious enough to bring it to me.  This helped to keep my sanity and Brian’s, since the iPad was sent along with extra clothes.

Once Brian’s fever broke, they prepared to administer the 24 hour fast.  Brian’s nurse, one of my favorites, informed me that they would have glucagon on hand to administer through Brian’s IV in case his blood sugars did not rebound from his bottle once the test was finished.  When I asked what the byproducts of glucagon were, it came to light that lactose is included.

Brian is VERY allergic to milk and milk products.

The rounding doctors assured me that they felt his allergies had more to do with milk protein and whey, and that lactose would not be an issue.  While I appreciate this information, I still did not want to take the chance and have Brian react to it.  As it is, dextrose has a corn byproduct.  I was told this would not affect Brian’s corn allergy, but after being on the IV, his left eye was swollen and he had a rash covering his body.  Maybe this was just a coincidence and really was caused by the infection, but after everything we had been through, I really didn’t want to take any chances.

Luckily, the doctors listened to my concerns and told me there were plenty other measures they could take to raise his levels without using glucagon.

The events surrounding this test were MISERABLE.  I helped the nurses hold Brian down while he was stuck with needles for IVs and held back tears while his fingers turned bloody from multiple sugar tests.  Going into the test, the nurses and I thought it would go fast, based on previous experiences, but that was not the case.

Twenty-five hours after we started, Brian was allowed to have a bottle.

Worse than the pain he was feeling every time he was poked, was not being able to comfort him when he screamed for a bottle or a snack strip (pure pears).  Even the mother of our “roommate” was heartbroken for my little man.

Thankfully, once the test ended and Brian was allowed to have a bottle, his blood sugar went back to normal without any additional measures.  Unfortunately, over the past three mornings, Brian would suffer “spells” where his pupils would grow large, he would stare into the distance, and we were not able to snap him out of it immediately.  The third morning, following his 24 hour fast, the resident assigned to Brian witnessed the episode.  Since we were in the hospital, and out of fear of missing something else, the doctors felt it would be best to consult neurology.

In case you have lost count, Brian now had five different departments following his care.

Neurology ordered a 48 hour EEG, hoping that he would suffer another spell during that time.  Brian did great while they glued the electrodes to his head and never once tried to mess with his “hat” during that time period.

Of course, when two bouquets of balloons showed up, the monitor went nuts!  It was great to see Brian so excited and see the brain waves going crazy on the screen.
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While Brian was hooked up to the EEG, we could do nothing but wait.  They no longer had to check his blood levels after endocrine confirmed that he has a low growth hormone causing hypoglycemia.  I will be able to follow up on this diagnosis with an endocrinologist at home, and in the meantime, I was instructed to watch him closely if he is sick or fasting.  They gave me my own glucometer and sent me to training to learn how to use it.  Now I get to be the bad guy when it comes to check his blood.  Although, the first time I used it, under the watchful eye of Brian’s nurse, Brian responded, “Good job, mom,” when I finished.

By Thursday, our eighth day at the hospital (ninth if you count the seven hours hanging out in the ER and being discharged), I hit a wall.  I was overjoyed when the doctors confirmed Brian would be released that day, because there was no way I could make it one more night without sleep or a real bed.  I was existing on coffee and the positive vibes from Brian’s nurses (he had the same great nurse every night we were there except one, and two of his daytime nurses were phenomenal).  I don’t know if I would have made it that long without them.

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We left the hospital with more information and even more questions.  We now know that Brian suffers from a low growth hormone (which his pediatrician was concerned with when he was nine months old, but it was never confirmed), must be monitored closely when fasting before a test or if he becomes sick (most cases he will need to go to the ER to raise his sugar levels), and that there were some inconsistencies with his EEG, but nothing the doctors were concerned with at the time.  Additionally, because we lost a week being in the hospital, Brian’s follow-up scope needed to be pushed back to allow more time for him to eat the trial foods.

Knowing that I would be up against the wire, I decided to forgo trying to incorporate carrots into his diet, and have stuck with pears and apples.  Slowly but surely, Brian has eaten a little more each day, and I am hopeful it will be enough for his test.

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Pure apple fruit snacks!

Brian will have his follow-up endoscopy on Tuesday, November 10, and then we will meet with his allergist and nutritionist on Wednesday, November 18 to discuss the results.  I am hopeful that we will be able to introduce two new foods to his diet and follow up with an allergist back home.

If all goes according to plan, then Brian and I will be boarding a plane home on Friday, November 20.  After more than four months already, I am looking forward to the light at the end of the tunnel.  I told the doctors I wanted to be home by Thanksgiving, and I am very grateful to them for helping me to do just that.

I know we still have a long road ahead of us, and I’m sure new mountains will appear along the way.  Thankfully, Brian and I are not alone in this journey.  From across the country and around the world, thank you.  Thank you for following us on this journey and giving me strength.

Today

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If the proverbial breaking point does exist, it is staring me in the face and threatening to toss me over the edge.

Over the past couple days, I have watched Brian as he was poked and prodded, but nothing compares to the last thirty hours.

At nine a.m. yesterday morning, Brian began a thirty-six hour fast to monitor his glucose levels and hopefully determine what is causing his hypoglycemia.  In the beginning, finger sticks happened every two hours, then one hour, and finally, every thirty minutes as his levels dropped.  The nurses who have been treating Brian strongly felt that his levels would become critically low very quickly, so I was optimistic that this would not turn into a lengthy ordeal, and may only take a couple hours.

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Sadly, this was not the case.

This morning, after twenty-five hours without food and twenty-three finger sticks (his poor fingers are raw and covered in band aids), Brian’s levels hit dangerously low, making it time to take a large blood draw for tests.  Unfortunately the IV placed to draw the blood slipped out, so a doctor on the floor had to do an arterial stick to complete the test.

I pride myself on keeping up the appearance of being strong when it comes to my kids, but this was brutal.  Having to pin down your child is miserable, but I cannot imagine not being with him and telling him over and over how much I love him and how sorry I am.

Now, after thirteen ounces of formula, a few bites of a fruit strip and seven more finger sticks, Brian’s glucose levels are stable and my baby is smiling again.  His voice is almost gone, but hearing him whisper is super cute.

In addition to the glucose levels, Brian has had multiple instances of “zoning out.” One of the residents witnessed an episode this morning, and for the sake of being thorough, decided to have neurology take a peak and make sure Brian is not having seizures (possibly due to blood sugar levels, excessive sleep deprivation or something else).  While I appreciate the attentiveness, I feel horrible when I see everything my sweet boy is going through.

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Also, I am having a hard time with the compliments people are giving me.  I am not super mom, and although I put up a strong front, like I mentioned at the beginning, I do struggle.

I have snuck away to the chapel in the middle of the night to shed tears of fear and guilt (they really should keep it stocked with tissues), or shut the door to our room while I take a few deep breaths and force the tears back down.  I’ve also watched the tears fall on my angel boy as I help the nurses hold him down.

I know how lucky and blessed we are.  Although our struggles seem difficult at times to us, I never forget that there are parents out there dealing with so much more.

I have to keep it together while I wait to hear back from the various departments invested in Brian’s care, and hope that our time in the hospital is drawing to an end.

I’m not super mom; I’m just doing the best I can and trying to focus on today.

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A Little Prayer Goes a Long Way

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I apologize for the delay in posting another update.

Brian came down with a virus, which resulted in high fevers and blood in his vomit.

A visit to the emergency room at the Children’s Hospital of Philadelphia also showed low blood glucose levels, which may indicate another issue.

Long story short, we are spending our days and nights in the capable hands of the doctors and nurses at CHOP, and we have a new specialty, the endocrine department, weighing in on Brian’s health and well-being.

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The first couple days were rough and involved little sleep, but the fever seems to be at bay, and Brian has enough energy today to fight the nurses and doctors when they come in to examine him.

Once it is clear Brian is on the mend, the endocrinologist will start a food fast to determine the cause for his blood sugar dropping.

As it stands, we may be in the hospital till possibly Tuesday or Wednesday.

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Please say a prayer for my tiny human.  He is a fighter and melts my heart when he lets a smile peek through during this tough time.  It is surreal to sit by his bedside and watch monitors again.  Even with his issues, we have managed to avoid hospitalization since he was in the NICU.

I have been fighting for my little boy since before he was born – I fought Matt when he was hesitant to have a second child with my medical issues, I fought the doctors when they wanted to deliver him at 33 weeks, I fought for him in the NICU when they called him a “wimpy white boy,”  I fought for the best possible care for him when his food issues began, and I am fighting for him now.  With every breath I take, he is my priority and I am not about to stop now.

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Thanksgiving

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Well, it has been a while since I wrote a blog page and I am happy to report that we can see the light at the end of the tunnel!  It looks as though Erin and Brian will return to us by Thanksgiving!  I know every year we give thanks for something on that day and we mean it, but this time it will be different.

This year, we can give thanks that our family is reunited.  We will give thanks to so many family, friends, new friends, and strangers who have helped us along the way.  No longer will we need color coded calendars to figure out where Addi will be staying on a weekly or sometimes nightly basis.  No longer will we miss each other so much and depend on FaceTime.  No longer will it hurt the second after our short visits.  No longer will Erin and Brian have to sleep in another bed.  No longer will Erin have to walk to a shady liquor store for wine.  Pennsylvania, why can’t you just put it in the grocery stores like other states?

I know there are many more children out there that are more ill than Brian.  So I will be thankful that Brian has a life long disorder that can be managed, thankful for good health insurance and Linda our Cigna rep, thankful for fraternity brothers, thankful for brothers in blue, PLEA, FOP, and thankful for so many that have shown concern and asked how we are doing.  I am thankful to all of you around the world reading our blog.  Lastly, I am thankful for the best wife and kids a guy could have.  My life is better because of them, and I would not trade this situation for the world.  Responding to difficulty is part of life and I believe that we are not victims of circumstance, we are just a family living our lives to the best of our abilities.  It also made me realize that choke, choke, I under appreciated what my wife did here at home for a long time.  I feel I am going to regret putting that on the interweb for all perpetuity as I will be reminded of that, I don’t know, daily.  (Love you, Cutie.)

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We are going to stick out the last two months (of the 5 1/2 total) without a visit as it is a lot of travel time and a short weekend.  Addi and Brian have a great time, but it is definitely tough on Erin to see us get on a plane early Monday morning after we had just arrived the Friday night prior.  She said it was too much of an emotional roller coaster, and I agreed.  Addi was a great travel companion, though.  There was always plenty to talk about, she was well behaved, and everyone loves having a 45lb kid in the middle seat.

Halloween is approaching, so that means I am going trick or treating.  Most of the years I have had to work, but sometimes I handed out candy with friends and ate chili while Erin took the kids.  I have a costume (Charlie Brown) and Addi will be Alice in Wonderland.  Erin will trick or treat in Philly or New Jersey and Brian will be a minion.  I suppose they could try to trick or treat at the Homewood Suites, since Brian can’t eat anything normally given out.  He could make a great haul on tiny soaps, shampoos, coffee filters, and shower curtain rings (where is Del Griffith when you need him?).

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I do, however, have one last request.  Please place a teal blue painted pumpkin outside of your home if you accept trick or treaters. Have available some small, cheap toys or pencils, etc. to give out for those kids like Brian who cannot eat chocolate, milk products, red dye, grain, or even fruit.

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Again, thank you for the support we have received.  We will do our best to live our lives in an appreciative manner just so we can feel as though we deserve a tenth of the love and support received.

Matt