Thursday, July 12, 2018

Summer Fun and Medical Issues (secondary hypertension, coarctation of aorta, perioral dermatitis)


First, let's talk about the fun stuff!

Summer has been underway since the last week of May.  Ellie had her Wish Connection Trip at the beginning of June (see blog post to learn more about her trip and The Wish Connection) and had a blast!  It was such a wonderful experience for her and the rest of the family.

She is back to doing swim lessons.  I wanted to sign her up for 2 sessions, but the Bear has been busy with camps.  Ellie's swim instructor is incredible.  She teaches kids with special needs in the pool in her back yard.  A few years ago, the instructor and Ellie accomplished more in 1 lesson compared to the 6 lessons we had with the YMCA!



This year we signed Ellie up for horse camp in both June and and in July.  Her June camp went so well.  She had a blast and was on her best behavior. She managed to win the award for The Most Energetic Camper surprise, surprise.  However, since then, we increased her Strattera and noticed that she is less cooperative - not following directions as well and is more oppositional (the low dose helped so much with the shirt pulling, tantrums, and cooperation).  Her days are about 50/50 good/bad.  She has horse camp this week.  The first day she acted out the entire time with shirt pulling.  Tuesday, her behaviors were better, but she was crying for Daddy and fell asleep for 10 minutes. I thought that she may have been sick.  Yesterday was a great day.  On top of that, girlfriend is refusing to ride.  They put her on the horse and she screams and kicks.  She has been doing great the past 5 years so I am not sure what is going on.  She has a horse show tomorrow so we'll see if she is actually in it. Still, she is loving it and asks for the "horses and donkeys" daily.





My daughter is a Metal Head.  Ellie keeps asking to dance and grabs my phone to select songs.  She has her favorites.  She has favorites to dance to and songs that she claps when they come on the radio.  She loves Like A Storm (a modern metal band from New Zealand that uses the didgeridoo in some of their songs), Skid Row, Guns N Roses "You Could Be Mine", Aerosmith, Queen (yes, I know, not metal), and to throw a bit of country in there - Cole Swindell's "Flatliner" and The Wiggles, of course.  Hey, a girl needs well rounded musical tastes.

Dancing to "18 and Life" by Skid Row

Hypertension and Possible Heart Problem:

About a year ago, we saw nephrology due to high blood pressure, but her BPs were only high some of the time.  She got referred back this winter by cardiology as she had tachycardia (high heart rate) and her BPs were more consistency high - especially the diastolic, but not enough for a diagnosis of hypertension.  We were supposed to have a follow up in August, but we had to move up her appointment because:

1. her systolic (upper #) was climbing into the mid-120s (her diastolic normalize)
2. the blood pressure in her left arm is significantly higher than her right arm - by 9-13 mmHg

Typically, the most common causes of high blood pressure in kids are related to kidney disease and congenital heart defects.  This is called secondary hypertension.  As the childhood obesity rates rises, us health care providers are seeing more and more incidences of primary hypertension (adult hypertension).

Normal blood pressures for kids are based off age, gender, and height %tile.  For Ellie, her systolic should be closer to 112 mmHg instead of 125 mmHg.

Having one arm measure consistently more than 10 mmHg higher than the other arm suggests cardiac defects such as coarctation of the aorta or an aberrant subclavian or carotid artery (an artery that branches abnormally off the aorta).  In adults, this is usually a sign of a clogged artery.  We are wondering how long this has been going on because at some of doc visits over the past 3 years, her BP was performed on the right arm and other times on the left.  I discovered it when I was checking her a few times a week at home.
Ellie likes to do her own blood pressure after I do it.
This is the most accurate blood pressure machine that I have found  and that has the true pediatric cuff.
It is $64 on Amazon Prime and includes infant, pedi, and adult cuffs.


Coarctation of the Aorta is a cardiac defect often discovered at birth.  It is a narrowing of the aortic (that big vessel you see at the top of the heart).  Symptoms include a murmur heard on the child's back, breathing problems, easily fatigued, and blood pressure differences between the arms and the legs.  In mild cases, the child may experience no symptoms.  The problem with coarctation is that the left ventricle of the heart has too work a lot harder.  This can cause the high blood pressure and thickening of the ventricular wall.

Photo Credit: Health Jade


Ellie's nephrologist looked at the report of her January basic echo and it said normal aorta.  He contacted the cardiologist to see if we needed to do a doppler radar of the arteries or do anything.  Cardiology would like to repeat her echo.  Interestingly, typically, the abnormal artery is the right side, meaning the right blood pressure would be higher.  However, in Ellie's case, hers is the left arm.  That would be rare and I haven't been able to find any medical articles or case studies where patients had abnormal left artery. So, I am pretty sure her heart is fine and this is just another random health issue that The Bear has.

In the meantime, she has to take blood pressure medication as she officially has hypertension.  The nephrologist and Neuropsychologist  discussed and opted to start her on a morning dose of clonidine (she takes it at night for insomnia) as it helps with blood pressure and hyperactivity.  We start that this weekend - fingers crossed it helps her ADHD!


Perioral Dermatitis:

We are still dealing with Ellie's perioral dermatitis. Perioral dermatitis is a relatively uncommon dermatologic condition (~0.5-2% of the population) that occurs on the face - typically around the nose and mouth.  Women ages 25-35 are most commonly affected, especially those who wear makeup.  Steroids make it worse.  Unfortunately, Ellie takes an inhaled steroid for her asthma using a spacer and a mask.  Ellie started getting these round bumps around her chin and later her nose - all areas covered by her inhaler mask.  We tried treating is as though it was impetigo (a bacterial skin infection) with Bactroban (a prescription antibiotic ointment).  With no improvement, we switched to metronidazole (flagyl ointment), which is the primary treatment for perioral dermatitis.  Then we did hydrocortisone in case it was contact dermatitis.  I then decided to use lotramin (an anti fungal).  With the metronidazole, hydrocortisone, and lotramin, it would look like it was clearing up by day 3, but then get worse by days 5-6.  Eczema cream and her sunscreen make it worse. We tried switching her inhaled steroid from Flovent back to Qvar and that seems to have helped a bit. In May, she got referred to dermatology who is "working her in" on August 1st.  While it is not contagious and it doesn't bother her, it looks horrible.  I am thinking that perhaps she needs the rash scraped and maybe an oral antibiotic.


Perioral Dermatitis
















Wednesday, June 6, 2018

The Wish Connection: Ellie's Dream Come True

Earlier this year, Ellie was nominated to receive a wish from the Wish Connection!  We found out a few months ago that she was going to have a wish granted and we couldn't have been more shocked or excited for our Bearity Bear.



OUR STORY

Watching a child’s face light up with joy is priceless. Whether it’s a trip to Disney World, a swim with the dolphins or hanging out with a famous country singer, it’s the chance for a dream to come true and to lift up a child, and their entire family, along the way. That’s what we do as part of The Wish Connection. We’re here to grant amazing wishes, create smiling faces, and build a connection between families and a community that cares. The Wish Connection is a 501(c)(3) non-profit organization that was formed in the fall of 2006 by AT&T employees in San Antonio who wanted to be directly involved in granting the wishes of children who have life-threatening or chronically debilitating medical conditions. The Wish Connection is truly a unique wish-granting organization that has expanded its grant-giving to Austin and Dallas, Texas and several locations in California.

MAKING OF A WISH

To make a wish come true for so many deserving children, it takes the hard work of many dedicated staff, volunteers, donors and other supporters. Click here to learn more about the process of wish giving.
 
Our Mission: The Wish Connection is dedicated to granting the wishes not only of children with life-threatening medical conditions, but also the wishes of children who suffer from chronically debilitating (although not necessarily life-threatening) medical conditions.
 
Our Logo: Our logo represents how our communities can come together to lift up one child in his or her time of need. All of us, working together, form the star that represents the spirit of unlimited possibilities and the wishes of the children.



Ellie's Wish:
There is so much that goes into organizing a wish for a child.  Ellie's team consisted of, I believe, 18 team members.  There was a California Team and a local, Austin Team.

We had a general idea of what Ellie's wish was going to entail, but on Memorial Day weekend, 2 members of TWC Team came to our house with a beautiful Shutterfly book and binder explaining everything about Ellie's dream Wish.  I will be telling you about Ellie's dream wish mostly using pictures:

The big send off:
With a new Frozen backpack stuffed full of fun activities for our flight (donated by TWC), we prepare to head to Anaheim, California for a fun-filled adventure!  A few AT&T employees and their children brought donuts to our house while we waited for the limo to arrive.



The limo arrives at the Austin Bergstrom airport and we are greeted by another AT&T employee who helps us with our luggage.  Security was fun.  There was no line and yet, we were detained for nearly 30 minutes.  1. the stroller needed to be swabbed.  2. Ellie's travel oxygen concentrated needed to be looked at for a good 10 minutes. 3. my backpack which contained the power cord for the oxygen, medications (liquid, pills, inhalers, wound care ointments), snacks, and cecostomy supplies needed to be manually checked.  There may have been a minor fit as Ellie didn't want to keep her shoes on (children under 12 years-old do not need to take off their shoes to go through security) because mommy and daddy took off theirs so she had to throw herself on the ground, cry, and yank off her shoes.



We arrived at the Long Beach airport!  Again, we were greeted by a welcoming committee.  The balloons were a BIG hit!  Thankfully we had 3 people to keep Ellie entertained because there was a debacle with the rental car company involving the carseat.







Huntington Beach, California:
The Hilton Waterfront Resort (Huntington Beach): we got the VIP treatment.  Complimentary breakfasts each morning during out stay.  (so . . . Ellie is completely off the Risperdal and doesn't eat much anymore.  In case you are wondering, the buffet was $22.  Ellie ate 1/3 slice of bread.  That is some expensive bread!).  Her room was stocked with Frozen beach gear, her favorite snacks, and a bottle of wine for us tired parents!


We spent both our mornings in Huntington Beach in the ocean.  Bear was so excited.  Last year, we went to Seal Beach to see Drew's dad and his wife.  She couldn't go into the ocean due to very low B-cell lymphocytes as we had to worry about necrotizing fasciitis aka flesh eating bacteria.  So this was a big treat for her.





Irvine Park:
Party!  Did someone say party?!  The AT&T employees threw a huge Frozen party for Ellie at Irvine Park.  Complete with a bouncy house, train rides, unlimited pony rides and cupcakes, Ellie had a blast!




There was a surprised guest appearance -Elsa!  It was quite amusing to see Ellie steal the train engineer's microphone to "help" Elsa sing.





Anaheim, California:

Hilton Anaheim:
Again we are greeted by AT&T employees where Ellie receives a letter (and CAKE) from Elsa!  This Hilton is located near the Convention Center and Disneyland so there is a Disney store in the hotel.  Unbeknownst to Ellie, we were going to be attending The Wiggles concert the next day.  The Wiggles is the entire reason we ended up in Anaheim as they were only touring a few cities in California and 2 cities on the East Coast. We got complimentary breakfasts and they have Mickey Mouse waffles! Ellie decided to play with hers instead of eating it.





Rock And Brews:
Okay, they need to open one of these in Austin.  We happened to stumble along this place and decided to check it out.  The walls and entire ceiling were covered with artwork and flags of famous bands such a Hendrix, Metallica, Pink Floyd, Aerosmith, etc.  Music videos were playing on all the big screens and all the dishes are named after bands.  Andrew also took great pleasure in coloring.





Knott's Berry Farm:
TWC managed to get us VIP passes to this amusement park.  Similar to Six Flags, this park has all sorts of rides for kids and adults.  Bear pretty much spent 2.5 hours repeatedly riding the train, the little truck thing that runs on tracks (we had to try out each color truck), and the carousel.  She also discovered Snoopy and walked out of the park with all sorts of Snoopy paraphernalia and new, beloved rainbow Snoopy flip flops.  We had tickets to Soak City within the park, but Ellie Bear was going into that cranky tired mood.






The Rainforest Cafe:
Well, that was sort of a disaster.  Ellie was pretty tired at this time and she was refusing to leave the hotel room without her rainbow latex balloons with The Wiggles on them.  We told her she could bring one balloon.  She selected the red balloon and we tied it to the handle of her backpack with the balloon only rising 2 inches above the handle.

We didn't realize that the Rainforest Cafe was inside some sort of Disney Town that involved parking and security lines.  Andrew goes to park the car while Ellie and I get started on security.  As they search her backpack, the guy informs me that she most likely cannot bring her balloon into the Town. He says he will check with his boss after I prepared him for a potential tantrum.  As he radios his boss, Ellie has an epic meltdown because he is holding onto her backpack and balloon.  The poor, young man looks flustered and waves us through without even waiting for his boss' reply.  Then the metal detector woman tries to take the balloon away until I told her we were already told we could bring it in.  Seriously!?!?!  Who the hell takes away a balloon from a little kid!?!?!  And in a place that caters towards children!  It isn't like it was hurting anyone.

The meal was delicious and Ellie thought the elephants were hilarious - she was waving bye bye to them and then telling me that they were "sleeping" when they were no longer moving.



The Wiggles:
The Wiggles have been around for 27 years and the blue Wiggle, Anthony, is the only original cast member left.  Ellie was gifted a personalized backpack and personalized Wiggle's shirt just for the occasion.  We were granted backstage passes where the Bear nearly passed out due to the shock of seeing her favorite TV characters.  The roadie took about 20 pictures of all of us and in only one was she actually looking at the camera!  They all then sang her a song of her choice and Ellie chose "Do The Monkey", her favorite.  It was such a wonderful and unique experience for her.


The Wiggles: Emma (yellow), Lachy (purple), Simon (red), and Anthony (Blue)


Welcome home!
When we arrived at the Long Beach airport, we are greeted by our AT&T friends and they are bearing more activities for Ellie to bring onto the plane.  They assisted us with our luggage and we had no issues with security.  TSA pretty much checked the oxygen concentrator and that was that.  We had another exciting limo ride home and she was surprised by her friends and many of the TWC friends and their children at our house for a "Welcome Home" party.  Waiting for Ellie in the backyard was a surprise sandbox!




Andrew, Ellie, and I would like to thank all members of The Wish Connection Team for organizing such a wonderful trip for Ellie and our family.  It has been an amazing experience and an adventure that we will never forget.  We would also like to thank all of the companies that have donated items, tickets, meals, and upgrades during her Wish trip.  We will never forget all that you have done for our daughter.





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Tuesday, April 24, 2018

ADHD Psychiatric Update and The Laundry Thief


Can you believe it?  TWO blog posts in one month!  This is amazing given how busy we have been.  There has been a ton of medical crap going on with Ellie.  Nothing serious, but I am tired.  She is tired. It sucks.  Yes, I am complaining.  I am only going to update you on the latest nonsense (you know skipping over the whole December ER visit due to low oxygen saturations) and move right into what has been going on these past few weeks.

First off, how about a little humor? We have a laundry thief in the house.  Ellie has this great obsession with her grey pants and grey shorts.  As in, they are the only articles of clothing she wants to wear.  As soon as they make it through the dryer cycle, she is stripping down and putting those grey shorts on.  Yes, for all you people inundated with snow, it is freaking hot out here in Texas - hence the shorts.

Anyway, Ellie thinks she is so sneaky. She will put the dirty shorts back into her drawer as soon as she puts on her PJs, trying to trick me into thinking that they are clean.  She also has the propensity to remove them from the dirty basket in the laundry room.  She discovered that I was hiding them in the washing machine so then she filched them and again put them back into the drawer.  I have now taken to hiding them in the laundry basket in the master bedroom or in the dryer.


ADHD vs. Comorbid Psychiatric Disorder
A few months ago, I posted about finding the right ADHD medications for Ellie.  We opted to take her off the Risperdal due to rapid weight gain and we had been trying other stimulants.  She had uncontrolled muscle movements and tics from Vyvanse and Adderall XR

We have tried adding in medications that used to work well for her to see if they would help again now that she has been off them for a while. Unfortunately, she was experiencing some significant adverse reactions that we did not see back whens she was on these medication previously.  I have absolutely no idea why she is responding so differently this go around. (No, it isn’t puberty).  She is now back on Risperdal, which is helping a little bit for her hyperactivity only.  We cannot keep her on this long term as she is back to rapidly gaining weight. (Weight gain for Ellie is not bad given her history of failure to thrive.  The concern is that it is really rapid - several pounds over a few weeks rather typical pediatric weight gain over a year.)

In addition to not having her ADHD under control, her thyroid is fluctuating and there are several changes at school.  We recently started to see behaviors that we have never seen before as well as a significant increase in hyperactivity even with an increase in Risperdal.

Neurology and I have both decided that it is time to consult with a pediatric psychologist.  It will be a while before she can be seen, but we are hoping that her doctor can pull some strings and get a phone consult.






DNA Gene Testing for Psychiatric Medication

A few weeks ago, during her f/u neurology appt, we swabbed her cheek for DNA testing.  Most studies have been performed on adults undergoing treatment for depression.  Certain genetic factors can affect how certain enzymes metablize various medications.  Medication recommendations are based off these results - use as directed; moderate gene-drug interactions; and significant gene-drug interactions.  The studies, on average, show that only 30% of those participants in the DNA tested group exhibited better control of their depressive symptoms than those in the non-DNA group.  Still, we were desperate and will take that 30% chance.

There are several gene companies out there such as GenoSight, Kalios, GenoMind, etc.  I originally contacted Dynamic DNA Laboratories as they do everything in house and you do not need a doctor’s prescription to run the test (they have their own staff review the results with you).  I spoke with their scientist and he stated that Ellie’s extra 21st chromosome does not affect the results.  Our neurology office uses GeneSight so we went with them.  It is important to note that many insurance companies consider the DNA testing for Medication Management to be experimental and with thus not cover such testing.  The average out-of-pocket expense is ~$300.

We just got the results and it was very disappointing.  While she should be able to tolerate the following as directed: all antidepressants, hypnotics (ie Xanax), antipsychotics, and mood stabilizers, there is only 1 (yes, I said one), ADHD medication that fell under the “used as directed” category.  All other medications have moderate to significant DNA interactions.  The good news as that we will no longer play Russian roulette with medications, but what if this one medication doesn’t work? 

Apparently, Ellie’s gene report looked “unusually empty” so the neuro clinic called GeneSight.  According to their lab, Ellie is the lucky 0.7% where the report comes back like that.   I mean, of course she is.  Why can’t anything ever be simple when it comes to The Bear?!


Ellie has been on methylphenidates, amphetamine salts, detroamphetamine, lisdexamfetamine, and guanfacine.  She used to tolerate amphetamine salts and guanfacine (the short acting) - all within the moderate to significant gene-drug interaction She is currently on clonidine and is experiencing no issues even though it is listed under moderate gene-drug interaction.









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Tuesday, April 17, 2018

The IEP Meeting and Ellie Antics


Yes, I know that it has been months.  So much has happened in the Theurer household and I won’t be able cover it all unless I feel like writing a novella. 



The IEP Meeting:

Back in January, we had Ellie’s IEP meeting. Yep, I said January.  I told you that it has been a while since I last posted.  It went well.  There were no surprises as I meet with the teacher and speech therapist beforehand to help develop goals.  We are really going to push Ellie this year with her reading, communication, and mathematics.  We have high expectations for her and we have no doubt she will meet or come close to meeting her new goals within the next year. 

In fact, her end of March report card showed that she already mastered 3 of her 4 math goals and  that she is halfway through some of her other goals - that’s all within 2 months!  As for fine motor skills, we added back in 1:1 OT.  We also removed her handwriting goal because she is not progressing.  Instead, we are going to teach her how to type on the computer and on her speech device.  The teacher and I are still going to work on writing her first and last name so that she can write her name on school work and sign documents.  

A miracle occurred, the speech therapist added on MORE 1:1 speech therapy minutes.  I know that y’all are shocked because us parents usually have to fight for this.  Yet, I didn’t even ask for more minutes - talk about a pleasant surprise!

Such a good girl at the dentist!


A Thief in the Night

Ellie seems to be doing well with her fine motor skills.  She is actually aspiring to be a cat burglar.  Her ABA center has a keypad to the door that leads from the waiting room to the therapy rooms.  The little turkey watched the therapist enter the code and on her 3rd session, the stinker butt unlocked the door.  That’s right, Turkey Bear figured out the code.  Needless to say, the door now has a new code.

Throw Back!



Little Miss Talks-A-Lot
Ellie has had a communication explosion.  Kyla has been Ellie’s respite care provider for 20 months now.  Last month, instead of calling her “uh”, she is now “Kai - Uh”!  She is also trying to say more words and some of them are becoming more understandable.  I do believe that her speech device has played a big role in expanding her vocalizations.  

She also has the propensity to talk in her sleep when I go to put on her oxygen nasal cannula. 

What she says in her sleep: Dada, Pig [her favorite restaurant], zone bar, horse.  Not once has she said “mama”.  I fall below food items.


Somebody loves the donkeys, Honky and Tonky













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Wednesday, March 21, 2018

WDSD: The Many Faces of Down Syndrome

Today is World Down Syndrome Day!  While all people with Down syndrome carry 3 copies of the 21st chromosome and share some facial features, they are all unique individuals just like everyone else.  They look like their family member and they have their on interests and strengths.  Today, I would like to share with you the community that I became a part of when my daughter, Ellie, was born with Down syndrome.


Ava is 10 years-old and loves reading, art, music, and dance.
In this picture, she is working on her Molly Brown project for her Colorado History class.


Chloe enjoys dancing, acting, and pretend play.



Hannah loves all things musical, especially dancing. She's being to love showing her independence.



Kyshon is 10 years-old



Kylie is 18 years-old and enjoys skiing, basketball, and swimming.  She is warm-hearted and kid and occasionally fresh!



Let's give a big smooch back to Miss Grace!  She loves dancing to music with beats, tennis, and swimming.  She has a great sense of humor and enjoys pranking her family.  She is currently learning  how to play guitar and is a voracious reader and good student.
(I asked her mom about some of Grace's pranks.  Ooh that girl is a cheeky little thang!)



Sydney is 13 years-old and loves gymnastics, dance lessons, and long walks on the beach.



Ruby is 7 years-old and loves bowling, playing with dogs, dancing, and ice cream!




Kennedy is 13 years-old and enjoys dancing, acting, modeling and shopping for shoes and purses.




Ty is 10 years-old.  He loves all sports in the Special Olympics, watching football - especially the Cowboys and Longhorns (As a fellow Texan here: "Hook 'Em")



Evie Grace loves books, Sesame Street, and Mickey Mouse.




Hailey is 11 years-old and loves to watch Barney on the iPad.




Hailey loves Disney World (especially the Princesses), all things Frozen, and Shopkins. She also loves her two older brothers to pieces.




Ellie is 8 years-old and full of sass!  She loves horseback riding, school (yes, she's and odd duck), Mickey Mouse, trains, dancing, and Nutella.  What she does not like - her glasses!



Julian is a 7 year- old who loves to read, write, and swim.  He is also a big fan of chocolate ice cream!



Kimber enjoys singing, dancing, and doing her own hair and makeup. 



Clara (pictured with her sister, Rowan) is 5 years-old and loves dance, listening to the Beatles, and all things Coco. Most of all, she loves to play with her twin sister!




Aasher, with his awesome yellow shoes, is 8 years-old and loves baseball, swimming, movies, his Daddy, and Disney World




Courtney is 23 years- old and loves cheer, music, drawing, her brothers and watching children. 
(Do you think Courtney would come and babysit Ellie Bear?)




Lila loves learning about animals!  She also enjoys reading, dancing, and singing.



Lexi enjoys writing, singing, dancing, and cooking (can she come over to my house???).  She also loves doing flips.




Dewey is 23 years-old and loves Minions, Trolls, swimming and running track and field.


Sammi is 11 years-old and is a big fan of basketball, YouTube, reading and being a good mom to her dolls.


Levi, pictured with his brother Adam, loves to read Pete the Cat, play with cats, and play outside.



Darya loves music, Barney, hot dogs (check out her awesome costume!), the beach, and hamming it up for an audience.


Check out that smile!   Camden is 5 years-old and loves the pool, basketball, and Peppa Pig



Emily is 8 years-old and enjoys gymnastics, dance, horseback riding, and Disneyland!


Alexander is 23 years-old and loves competitive swimming and the Special Olympics. He also enjoys listening to music, playing Call of Duty, and hanging out with friends.



Wyatt loves the beach and church.  He also enjoys running track, swimming, and playing with PlayMobil.



Summer is a 3 year-old who always has a smile on her face and always lights up a room.  She loves singing and dancing.


Berkeley is 12 years-old and loves cheerleading.





12/27/1958 - 12/14/2012
This blog post is in loving memory of my Aunt Peggy.  Peggy loved bowling, swimming, and John Denver.  She passed away just a few days before her 54th birthday in 2012.  She was a beloved daughter, sister, aunt, and great aunt.  Peggy, you are forever loved and forever missed.





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