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Presley's Progress
Sept. 2005:
Presley Elizabeth Ross was born on Thursday, Sept. 22, 2005 in Austin, TX., it was the first day of Autumn.  The delivery went very quickly, which pleased us all, especially Mommy!  She was born the day before Hurricane Rita was to hit near Houston, so we are lucky that we got to the hospital early enough to miss all the traffic coming into Austin!
 

During Presley's first bath, being performed by Daddy, the pediatrician told him there were signs of Down syndrome.  About a week later, tests confirmed that she does have Down syndrome.  Our world stopped for a brief period of time, but we realized that we are so blessed to have our Precious Presley.  On day 2 a sonogram of her heart verified that she has no heart defects  - this was wonderful news!!!  There are Up days and Down days, but for the most part it's all very good.  Here is a great story of how it feels at first, it's called "Welcome to Holland".

 

Presley is doing great and we are just loving our new addition.  Caden is a GREAT big brother and is so helpful!  He really prides himself on helping out with baby sister.  He had a different name in mind for her - "Avery".  When we told him we named her Presley, he said, "I'll just call her "Baby Sister" then."  I think he's called her by name maybe once or twice and other than that, it really is just Baby Sister.  When we say our prayers each night, mommy says, "Thank you God for Presley" and Caden repeats with, "Thank you God for Baby Sister".
 
Daddy is doing a great job adjusting to parenthood of a newborn too!  When mommy shares her, he just holds her and stares :-) 
 
Aunt Kim wrote the sweetest poem for Presley and Daddy, get out the tissues and enjoy!

Nov. 2005:

We've started her therapy already and the doctors and her therapists are very encouraged by her great muscle tone.  She rolled over two times on her 2-month birthday and again the next day!!!  She's doing awesome and we can't wait to watch her progress!  Big brother Caden is still loving big-brotherhood too!  He tells me that Baby Sister is the prettiest girl in the world :-)

Jan. 2006:
HAPPY NEW YEAR!  Wow, we can't believe 2006 is already here.  Presley is doing wonderful and performing just as any other 3 and 1/2 month old baby would!  She sleeps through the night now, which is sooo nice!  She recently discovered her right hand and it so sweet just to watch observe it so closely.  She'll make a fist and then open it up and twist it around and just stare at it with amazement!  I remember it was around this same age when Caden discovered his hands too - it's just the neatest thing!  She's also smiling and cooing so much now.  It is so sweet to hold her and carry on a conversation.  She just says "ooohhh" and "aaahhh" and gives you a little laugh :-)  Mommy went back to work this month and Presley is staying with her GiGi (Jeffrey's mom).  She's having a great time and mommy's days at work seem to drag on forever!  I miss my babies!!

Jan. 11, 2006:
This one deserves its own entry!!!
Presley rolled over from her back to her tummy today!!!!  Way to go girl!

Feb. 2006:
Presley is doing just great!  She is so excited about her very first Valentine's Day :-)  She is so strong, she can almost sit up from a 45 degree angle!!!  She loves to hold onto your fingers and pull herself up!!!  She also loves to chew on her fingers and occasionally her thumb finds its way into her mouth -- uh oh!  She's developing such a personality these days.  She's very sociable and loves to have conversations with you!  She has a dolly that she adores, so much that we have one that's always in her carseat and one that's always at home for her!  We tried to feed her cereal with a spoon and she REALLY did NOT like that at all!  She screamed and cried and teared up like never before!  We've tried a few more times and get the same response, so we'll give it a bit more time before we try again.  Momma is having a little too much fun dressing Presley - she has more designer clothes than mommy or daddy have combined!  Caden is still loving having a little sister around and still takes pride in helping out.  The other morning he came into our room and said, "So, do you have any dirty diapers I can throw away?"  She hasn't had to go back to the Dr. since Christmas, so we're not too sure how much she weighs, but she's definitely getting to be quite the chunky one - she's full of rolls!  We go see Dr. Mirrop on March 1st, so we'll let you know!  We're also helping to plan the upcoming Dash for Downs, so if you haven't signed up yet, it's not too late, you can
register now for Team: Upside of Down!  The race is on March 26th!

ENTRY II:
Presley's Valentine's went great and she was just cute as can be!  Check out her new
pictures She had to go to the Dr. today because she's not feeling good :(  She has 2 ear infections and the flu - poor baby girl is just miserable :(  We're so fortunate though that this is the FIRST time she's been sick!  She weighs 12 lbs. 13 oz. - that's in the 25th percentile for weight on a regular growth chart - great job!  Caden was in the 25th percentile until he turned 2, so she's right there with Big Brother!  Caden said just the cutest thing the other day - we were driving to school and he was in the back seat with Presley and he told me, "Mom, when I grow up and get bigger, I want to be Sister's step dad."  My heart just about melted!  I explained why Jeffrey was his step dad and that he would always be her big brother and that was an important job, but he told me that he wanted her to have 2 dads too!  He loves his sister!!!

March 2006:
Gosh, time really flies!  Presley is 5 1/2 months now and is doing spectacular!  At her 5 month check up, she weighed in at a whoppin' 13 lbs. 2 oz and was 23 1/2 inches.  This puts her in the 25th percentile on a regular growth chart!  She's moving right along!  Presley slept in her own bedroom for the first time on Sat. March 4th :-(  Mommy couldn't fall asleep until after 3am because I was missing her so much - she slept in her portacrib in our bedroom the next night :)  We're all keeping busy with planning the Dash for Downs, Daddy's 30th b-day party, Caden's 4th b-day party, and trying to finish landscaping the backyard!  Can't wait until the kiddos have a backyard to play in!

ENTRY II
Presley is quite the little flipper these days.  Friday night she started rolling a bit more from her back to her tummy...by Saturday night she was a pro!  GiGi is now a "Presley-Flipper" for her day job - as soon as you lie her down on her back, she rolls to her tummy, but can't get back over.  Then you put her on her back again and 2 seconds later she's on her tummy and can't get back over!  It's great, but now we just need to work on her flipping from her tummy to her back...before we know it she'll be rolling across the room!  Good Job Baby Girl!!!

ENTRY III
DASH FOR DOWNS UPDATE:
The Dash for Downs was a great success today!  DSACT raised close to $25,000 from the event!!!  Thanks to all of you, Team: Presley raised $2,545 - that's awesome - thanks so much!!!!  Over 600 people registered for the event - Team: Presley had 75 members and had such a great presence at the Dash!  CONGRATS TO CAITLIN & WESTON CRONAN FOR WINNING THE 5K RACE FOR THEIR AGE GROUPS!!!!  We had people from Houston, Dallas, Temple, San Antonio, Elgin and from all over Austin!!!  From Jeffrey and me - Thank you from the bottom of hearts (which have doubled in size since having Presley :) for showing your support in raising Down syndrome awareness!!!! 
Some pictures here!

 

April 2006:
I did it, I did it!!!!  I rolled from my tummy to my back!  We've all been having fun flipping Presley over from her tummy to her back, but tonight she finally rolled over herself.  The key is repeating it, but I think she's pretty darn to close to getting it mastered! 

We had a great 1st Easter with Presley.  We spend the weekend with family and friends - Aunt Rosie and Uncle Kenton came down to visit from Indiana!  As you can see in the pictures, Presley wasn't in her typical pink attire, but lovely in ladybugs!  Caden had a great time too, he hunted eggs with Carleigh and had to use a birthday bag because there were just too many eggs for his basket!  The Easter Bunny left a tent and sleeping bag for him.  He stayed out in the backyard in his tent until about 9:30 (when Jeffrey came in from working in the yard)!  He had a lot of fun there though and we'll camp out in a few weeks!  Jeffrey and Caden are going to Enchanted Rock in two weeks and Caden can't wait to climb a mountain!  We'll all be heading to Indiana to visit my family at the end of May.  Caden is so excited about the plane ride and hopefully Presley will just sleep the whole time!  Presley is doing much better with eating cereal and fruit from a spoon.  She'll open up for you now and prefers pears to peaches - she did not like peaches at all!  Great news: her white blood cell count was normal this past week and that is great news.  They will check it every 6 months since babies with Down syndrome are more likely to develop leukemia before the age of 3.  She has bloodwork done next week to check her thyroid.  I pray that these test results will be just fine too!  She weighs 14 lbs 6 oz and was 24" long!

ENTRY II
April 24th:
Miss Presley is ROLLING right along!  She can now consistently roll across the room!  Yeah!!!  Her GiGi will enjoy not being a Presley-flipper all day long anymore!!!  Now we can just watch her roll!

ENTRY III
April 27th:
More GREAT NEWS!!!  We got Presley's results from her thyroid tests and all is normal!!!!  Yeah!!!!!

 

May 2006:
Presley turned 8 months on the 22nd - wow, she's almost a year!!!  We took our first family-of-four vacation this month!  We visited five states in five days...we left Texas, flew into MO., drove to IL., drove to IN., then to MI., and back to TX.  Whew, what a trip!  We visited Jeffrey's family in Illinois.  Presley and Caden got to meet new cousins, aunts, and uncles there and meet Daddy's elementary school teacher!!!  Caden had fun with his cousin Carter and Presley had fun just being held by everybody!  We then went to Indiana and visited Grammy's brothers and sisters and all of their kids and grandkids!  We drove to Michigan Sat. and visited with aunts, great aunts, uncles and lots of cousins!  It was a fun trip, but of course, was good to get home too.  Presley is enjoying her baby food meals a lot more now, she still is a bit stubborn about it at times, but for the most part, it's pretty smooth.  She goes to the Dr. again in June for her 9-month check up.  Caden switched schools this month and Presley will join him 3 days a week there starting in July.  He loves it at Little Munchkins.  He's taking swim lessons right now and loves singing his Jesus songs.  Stay tuned for more in June!

June 2006:
HAPPY FATHER'S DAY DADDY!  Presley is saying mama,dada, bu bu, and giggling more!  The giggles that you hear on this page were recorded on Father's day -  -  Jeffrey licks her arm pits and she just giggles :-)  She looks right at Jeffrey now and says Da da - what a Father's Day gift for him!!!!  She's almost sitting up all by herself, she'll be there pretty soon!   She's just doing wonderful! 

July 2006:
Two more months and Presley will be a YEAR old!!  My, how time flies!  She is progressing wonderfully!  She is sitting up all by herself and staying there too!  We're working on techniques for her to learn to catch herself when she starts to fall backwards as well and teaching her to get into a crawling position!  I think she'll be crawling before Christmas!  Caden is back from visiting with his daddy for a few weeks and she just loves looking at him and watching him play, we all missed him soooo much!  She is also really starting to enjoy her baths more now.  She's discovered 'splashing'!  Presley is now holding her own bottle now too!  She needs a bit of help for the first 3 oz. because it's kind of heavy, but the 2nd 1/2 is a breeze!  We're still busy with helping to plan the Buddy Walk that is on Oct. 1st, so make sure you join Team Presley!  Our team theme is a Hawaiian flare - think of Elvis in one of his Hawaiian movies!  We'll all wear floral/Hawaiian shirts, leis, and have some Elvis music going.  It's our first Buddy Walk and we're really looking forward to it! 

August 2006:
I'm sure I sound like I'm repeating myself each month, but wow, is it really almost Sept.??  Presley is going to be 1 year old on Sept. 22nd and I just cannot believe how fast this past year has gone!  I heard Tim McGraw's song, "Live Like you were Dying" again today and it is so true - take time to love and spend time with those closest to you! 

Presley starts a new pre-school next week and we're so excited about it.  It's called Sammy's House and it is more focused on kids with special needs and techniques that will help them to develop.  They incorporate her different therapies into just about everything they do with her and she'll have a curriculum tailor-made for her.  It's about 75% kids with delayed development and 25% kids that are typically developing.  Check out their site to learn more about this amazing mom who started Sammy's House in memory of her son.  Presley is doing really good with sitting up and learning to catch herself if she starts to tip over.  Her therapist was very encouraged with her this morning and how she's reaching for things to her side.  This will be the start of her getting into a crawling position and learning to move her hands in front of her to crawl.  She's growing up and starting to look more like a little girl rather than a baby now!  She's about 17 lbs and she's starting to stretch out a bit too.  We go for her 1 year check up next month!  We took her to get her hearing checked but they discovered she had a double ear infection, so they couldn't check her hearing!  She must be one tough cookie because she hasn't been fussing or had a fever, so we didn't even know she had an ear infection!  Next week we should be able to get it tested, as long as the infections have cleared up!  Caden will stay at Little Munchkins and he loves his new Pre-Kindergarten class.  He loved his teacher, Mrs. Cyndie and we were worried how he would handle leaving her class, but he's doing just great.  His new teacher is Mrs. Denise.

A friend sent us a story about a father's love for his son who happens to have Cerebral Palsey and it is something we watch at least 2 or 3 times every day now!  Check out this inspiring, heart breaking, awakening story and video!

September 2006:
We have a TOOTH!  Yeah!  Presley's first tooth broke through yesterday (Thur. Aug. 31st)!  It's her bottom center-left tooth.  Can't see enough to send a picture yet, but it should be more visible soon.  This explains her crankiness at night lately!  She started Sammy's House today and did very well!  Brady and Roman are her classmates and I think she will really thrive there.  Mom and Dad are busy helping to plan for the Buddy Walk - it's Oct. 1st, so don't forget to register!  If you can make it out to the walk, you can make a donation in Presley's honor. The 7th annual Buddy Walk is at Reunion Ranch in Georgetown - hope to see you there!  TEAM:PRESLEY is a Hawaiian theme, so be sure to wear your brightest floral, hawaiian shirt and we'll provide the leis!  We ordered these books and DVD that our friend, Stefanie, told us about.  They are called Love and Learning and were created by parents of a daughter with Down syndrome years ago.  They capture basic language and communication concepts in a way that kids with DS learn - it's pretty interesting.  More to come....we'll update you after her 1st b-day Party!!!

ENTRY II:
Ms. Presley is 1-yr old now!!  My, how time flies!  She is doing great and typically I think I'd say that she's getting bigger everyday, but she really isn't :)  She is a petite little squirt!  We went for her 1 yr check up and she weighs 16.2 lbs and is 26" long.  New 1-yr pictures are now on the 'PICTS' link. She also STILL has a double ear infection, so she will get tubes in her ears on Oct. 4th - I'm ready for that!  We got her blood test results in and her white blood cell count is great, but they didn't get enough blood to test her thyroid, so we have to go back to get another sample for that :(  We are so excited about our 1st ever Buddy Walk coming up on Oct. 1st!  We have 104 members so far for TEAM:PRESLEY and are still counting!!!  Our goal is to raise $1,000 for DSACT and we have raised $830 so far, so we're almost there too!  My sister-n-law's sister-n-law (say that 10 times real fast :), Shannon, is the Agriculture teacher at Lake Travis High School and with her initiative, the Lake Travis FFA has given so much of their time and hearts to Team:Presley for the Buddy Walk this year too!  We can't wait to meet all of the FFA members at the Buddy Walk!  Our circle of close friends and not-so-close-friends and their support grows everyday and we are so very appreciative of that! - THANK YOU! 

October 2006:
The Buddy Walk has already come and gone!  We had a great time and are so proud of all of the support all of our friends and family have for for our cause of raising Down syndrome awareness!  Lots of details and pictures on the Buddy Walk 2006 page!  Presley gets tubes in her ears tomorrow!  We'll be there bright and early at 6am!  It's a pretty routine procedure so it should go pretty quickly and smoothly!  Hopefully this will mean an end to all of the ear infections!

ENTRY II:
Presley's ear surgery went just fine!  The Dr. was only able to get a tube in her right ear because her left ear canal is just too small.  Hopefully it will get bigger as she grows and possibly he can get a tube in it later on.  She's moving right along - still not crawling, but she can pivot while on her tummy any direction and then she just rolls to get where she wants to go.  She's really reaching for more toys now too!  She's starting to eat better - her tummy got nice and stretched from all those 8 oz bottles and little bit of food, so now we're aiming for more food as long as she maintains her formula intake.  All in all - she is doing absolutely wonderful!

ENTRY III:
We're making great strides this week!  Mom and Dad went on their first retreat without Presley this past weekend!  We had a great weekend getaway in Fredericksburg and Presley stayed with Grammy.  She did great, but learned how to manipulate Gram into holding her the whole time :)  When we got back from our trip, we discovered a new top center tooth!!!!  It was already 1/2 way out!!!  Then tonight Presley was in her crib and Caden and Mom peaked in to check on her and she was on her knees holding on to the rail!!!!!!!!  Uh Oh!  Daddy is in there right now lowering her mattress before she learns to escape!  Presley is still doing great at Sammy's House and loves all of her teachers and Mrs. Isabel - we're so excited about moving into the new school in Nov. or Dec.!  The Halloween costumes are ready to go - Caden is going to be a Texas Longhorn football player and Presley is going to be a Longhorn Cheerleader - Go Horns Go!

Hook 'Em Horns

November 2006
Caden had a great Halloween!  He was the cutest little Longhorn player ever!  Presley cheered him on from her stroller and was just adorable too!  Presley is consistently sitting up from a laying position now - yeah!!!!!  She perfected it this weekend.  We would see her sitting up in her crib in the morning, but we never knew how she got to that position - was it from her back like we've been trying teach her or some other way????  Well, here's how it goes: she'll lay on her tummy, do the splits and then push herself up!  Must be nice to be double jointed and so flexible!  She's also picking large food items up and bring them to her mouth - she can feed herself a lemon quite well!  The rice and carrott pieces, are a little bit more difficult, but she's definitely learning how it's done!  She's eating table food more and more and doesn't have any problems anything so far!  She also goes to bed on her own now.  We used to rock her to sleep and then lay her down.  The first night we put her to bed awake she cried for about 45 min.  we went in about every 3-5 minutes and patted her and comforted her, but it took a while to fall asleep.  The 2nd night, it took 20 min. and the 3rd night after she doesn't even cry!  Great job Big Girl!  Jeffrey and I started a sign language course this week - it's a 10 week class and should really help us to be able to communicate with Presley over then next few years!

Entry II
We are so excited!!!  We filed "Upside of Down" as a non-profit corporation with the state of Texas!  This will allow us to take Upside of Down.org to the next level of our long term plan.  The first phase was to get the website going and raise awareness, that's going great - thanks to all of you that are forwarding our site on to others!  The bracelets have been a big hit too - we've mailed over 350 across the U.S.!!! 
Order yours today if you haven't already!  Our ultimate goal is to send kids from lower income families with Down syndrome to summer camp.  As soon as Upside of Down is an official non-profit corporation, we can raise $ and launch our Adopt a Special Child for the Summer program - hopefully we'll help a kiddo go to camp in summer of 2007! 

Entry III
....and a few days later, "Upside of Down" is Official!  We are now officially a non-profit corporation and have our EIN, so we can start fundraising to send kiddos to camp on behalf of "Upside of Down"!

December 2006
Merry Christmas, Happy Hannakah and Happy Kwanzaa to all!!!!  Presley had a great 2nd Christmas!  She and Caden got lots of fun toys from Santa this year.  Caden was so excited about a toy that Santa left for Presley that he didn't even want to start opening his presents :)  Presley is doing great at school and they move to their new and much larger location after the 1st of the year - we can't wait!  She's starting to babble with new sounds and is reaching for more toys these days.  Her most FAVORITE thing to do now is look at and interact with herself in the mirror.  It looks as if she's rehearsing for a play or something with her big arm movements and expressions she makes to herself - it's is adorable and hilarious!  She also enjoys following her shadows, but the mirror is really the most fun.  We are so excited about our new foundation and even more thrilled to let you know that we will be able to send 2 kids to camp this summer!!!  We haven't even started fundraising yet, but with the generosity of family and friends over Christmas, we received enough donations for 2 campers!!!  THANK YOU SO MUCH FOR YOUR CONTINUED SUPPORT!!!  Who knew what type of curve ball life would throw us, but it has been a very positive ride so far!  We hope that you all have a safe and blessed new year!

January 2007
Happy New Year!  2007 - Whoa!!!!!!!!  Our new year is off to a good start - everyone is healthy!!!!  We're on about a 3-week streak of Presley or Caden not being sick, so that is great news!  We've been stuck at home for 4 days now due to a winter 'storm' here in Austin.  It's very unusual for us to have this cold of weather, but ice and even SNOW - that's very unusual!!!  Caden's getting to really play with all those Christmas toys and catching up on books and movies and we even ventured out to play in the ice, but after the first fall, he was ready to come inside and have some hot chocolate :-)  Presley is 28" now and weighs 18 lbs 3 oz!  Unfortunately, we cannot turn her car seat to face forward yet because she has to weigh 20 lbs (at least).  She's below the *regular* growth charts, but is in the 50% for weight and 25% for height on the DS Charts - so she's progressing just fine.  I'm learning more about various forms of discrimination against people with DS and it's just outrageous!  There are situations of people, including babies, with DS not being eligible to be placed on organ donor waiting lists JUST because they have Down syndrome....people with DS being denied life insurance JUST because they have Down syndrome!!!!  I know that different forms of discrimination exist in everyday life due to skin color, gender, nationality, etc., but this is the first time that we see it staring us in the face.  I'll keep you posted if I find of any new/additional information we should pass on to our congress people and leaders in D.C. about EQUAL rights for people with disabilities! 

February 2007
We have some very exciting news - baby #3 is on the way!  www.upsideofdown.org/news  Caden's response was, "Wow, can we name him Ben?"  Too cute!  I had a dream before I was even pregnant that I was having twin boys and GiGi has a strong gut feeling of twin boys too - let's hope it's just one little healthy baby in there!  The due date is Oct. 11th - same as Presley's due date, but she came 3 weeks early.  Presley is doing great these days.  It's time to baby-proof the kitchen though.  She is quite persisent on opening up the cabinets and pulling things out!  Stay tuned for more!

Lilypie Expecting a baby Ticker

April 2007
Ms. Presley is a year and a 1/2 now!  She is getting to be quite mobile and does that little booty-scoot very quickly!  She can make it from the living room to Caden's bedroom in about 2 seconds!  Her 18 month check up went great, she still hasn't hit that 20 lb mark though, so she's still facing backwards in her carseat :(  She's starting to pull up more and really jabbers more.  We got her bangs cut and she looks so much older now!  I'll update pictures this weekend - I promise!  I have been very delinquent with that, but my 1st trimester is over now and I feel so much better and can take on a little more than everyday life of mommy-hood and work!  A lot has happened over the last month: Daddy had a birthday, Caden had a birthday (5), Easter came and went and it snowed in Texas in April :-~ imagine that!  Bonnie is the young girl that we'll be sending to summer camp this year and we took her mom, Lorraine, out to visit Down Home Ranch last week.  It was amazing...she has no doubt that Bonnie will absolutely love it and have a blast.  I can't wait to see her face when we take her out there in July!  We'll definitely share those pictures with you!
May 2007
Presley and Caden are both getting so big!  Presley is finally 19lbs (1 more pound and we can turn her carseat to face forward!)  Mommy and Daddy went to Cabo San Lucas, Mexico for a week this month!  It was so relaxing, but we sure missed the kiddos!!  Caden graduated from Pre-school on May 24th - he can't wait for kindergarten!  We also found out that Baby #3 is going to be a girl!  Feel free to send us your ideas for names - due date is Oct. 10th!!! Have a great summer!

July 2007
Wow, what progress Presley has made in the last month!!!  She has 5 verbal words now - baba, Buba (her brother), up, hi, and bye!!!  She also has 10 signing words - more, eat, water, ball, please, daddy (does same sign for mommy and daddy), hat, bath, light & milk AND she waves hi and bye and blows kisses too :-)  We're really working on the signing because she's picking them up so quickly now - she's learned so much at Sammy's House too!!!!  Great job Presley!!!!!!!! She's also pulling up to everything now and trying to climb up everything too.  She's mastered climbing onto Caden's recliner and standing up on it  --  really gotta watch her now.  She pulls up to furniture and so hopefully she'll start cruising soon!  We took Caden and Presley to Six Flag's Fiesta Texas last weekend and they had a fun time - especially Caden.  The favorite activity for both of them was hanging out in the Lazy River though!!!  We're also so excited about the Buddy Walk, it's coming up on Oct. 14th!  Don't forget to register for the walk in your area!  If you're in Austin or Central Texas, you can register NOW for Team:Presley at:
http://www.active.com/event_detail.cfm?event_id=1461637  Last year we had 113 walkers on Team:Presley and we'd love toexceed that # this year!!!  More details on our Buddy Walk '07 page.  We've got lots coming up in the next few months - Caden starts kindergarten in August and Baby #3 will be here late Sept./early Oct.  Whew!!!!!!!!

ENTRY II
Our first camp scholarship recipient, Bonnie, attended Down Home Ranch July 8-13th.  She did a great job and had a blast!  Thank you all so much for your support to help Upside Of Down send kids with Down syndrome and from lower-income families to summer camp!!!  It made a huge impression on her and was so beneficial to hang out with other kids in a safe environment!  Picture and more info on
Bonnie's page!

August 2007
Presley is doing great with getting ready to walk!  She stood up in the middle of the room (not holding on to anything) 5 times this weekend and kept her balance for a good 4 or 5 seconds!  She also started cruising around the furniture....still does it with small, slow steps, but it's the beginning of walking!!!  Woo Hoo girl!!!  She's signing even more now without being queued to do so - she signs Buba whenever we say "Caden" now and she learned to sign "PaPa" for her grandpa!  Caden was wearing an Indian chief hat and she saw him and signed "hat" without being probed to do so - awesome!!!  She's really starting to develop in many ways the last few weeks and it's so exciting to watch.  Caden gets so thrilled when she does something new too, he sees such progress and is very proud of her too!

Mom is also busy coordinating the Down Syndrome Association's 2nd Annual "Share the Passion" calendar project!  The gala to kick-off the '08 Down Syndrome Awareness calendar is on Sat., Sept. 8, 2007 from 4-7pm at Kathy Womack Gallery in downtown Austin.  We'd love to see you there and join Prelsey on her Red Carpet debut (she's Ms. July in the '08 calendar).  More details on dsact's website: www.dsact.com

Calendar Gala 9.8.07

September 2007
Well, Ms. Presley is officially a toddler now!  She turned 2 on Sept. 22nd!  She's doing a great job at cruising around the furniture and pushing her new little grocery cart around - maybe she'll be walking by the time Santa comes!!!  We attended the DSACT "Share the Passion" Calendar Gala on Sept. 8th (picture above) and she was a beautiful Ms. July!  She and her friend Berkeley, are pictured together with Desiree Ficker, a professional tri-athelete.  Check out all the great pictures from the event at: http://www.dsact.com/DSACTcalendar.html  You can also order your own Down syndrome awareness calendar from the site as well!  Great Christmas gift!!!  Everyone is doing great in the Ross household, just waiting for the 5th family member to arrive!  Mom is scheduled for a c-section on Oct. 3rd, but it would be great if she came even earlier!  Uncle Brad (Mommy's brother) is getting married on Sept. 28th though, so she needs to come after that!  We still don't have a name for our newest addition, so feel free to email your suggestions!  Don't forget the Buddy Walk is right around the corner - Oct. 14th in the Austin area - you can still register for Team:Presley online at: http://www.active.com/event_detail.cfm?event_id=1461637 Just select "Join an Existing Team" and select "Team:Presley" from the pull down menu of teams!  We'd love to have you join us for a day of fun!

 

Entry II
Abbey Cate Ross is here!!!  Caden and Presley's baby sister arrived on Tuesday, Sept. 25th at 8:12pm.  She weiged 5 lbs. 10 oz. and was 18" long.  Just a little tike!  She's got tons of hair and we think she looks like Daddy more than anyone else so far.  Caden adores her and she fell asleep in his arms this afternoon!  Presley just kind of looks at her and minds her own business.  I fed her and was burping her and Presley came up and started patting her on the back too - very sweet!  Everyone's doing great, just a bit on the tired side!

 

'07 Buddy Walk Banner

October
The Buddy Walk went great this year!  We had another wonderful turnout of supporters for Team:Presley - close to 100 walkers!  Thank you to everyone who came out to show your support!!!  Our camo theme was a lot of fun, you could barely spot us :)  Pictures coming soon!  Presley has taken up to 5 steps without holding onto anything or anyone!  We're keeping our fingers crossed that she'll be walking by Christmas - if not, that's ok - it's still cute to watch her scoot on her booty!

November
WE'RE WALKING!!!!!!!!  WOO HOO!  Presley is doing such a great job walking now!  Still just a bit wobbly, but it's now her primary means of transportation now!!!  Guess I'll have to start swiffering the floor now that her boody isn't cleaning it :)

December 2007
Wow - It's almost Christmas!!!!  Presley is doing just fabulous!  Her walking is perfected each and every day, along with her speech too!  She had her annual assessment with her therapists and they agree that she is doing great.  They said her language skills and quick learning of new vocabulary is amazing - we are always excited to them impressed with her progress!  We actually wrote down all of the words she says and there are 24 words - WOO HOO!  She's passed her # of signs w/ verbal words now, which is excellent!  Presley's determined and curious little personality is also emerging.  She used to cry when the therapists would try to get her to do something new or something that was a little difficult, now she takes on the challenge and wants more!!!  I think she'll have so much fun this Christmas since she is now interested in tearing into things and playing w/ toys more!  We'll be going to Jeffrey's parents for Christmas Eve and there are so many gifts there for everyone that she'll have hours of fun in the presents!  Caden and Abbey are doing great too - Abbey is almost 3 months old and will start going to school at Sammy's House in January.  That will be a culture shock for her since she's used to being held all day - yes, I'm guilty of doing that!  We hope that you all have a very Merry Christmas and a safe holiday season!  Next time we talk it will be a new year - CHEERS!

January 2008
It's the two year anniversary of this website - Thank you for helping us to get over 16,000 hits in these two short years!  Presley is growing into quite the toddler - tantrums and all :-)  She's talking even more too - she calls Abbey "Sissy" and can now say "Thank You" to go along with her "Please"!  Presley moved up to the next classroom at school this month.  We'll all miss her being with Ms. Heather and Ms. Adrienne so much - they are both awesome!  She is finally 20 lbs - took 2 yrs, but finally got there!  She's had a double ear infection for a month now and she goes in Feb. 4th to have tube(s) put in again.  Last time the Dr. couldn't get one in her left ear because her ear canal was too small, they may have grown though, we'll see in a few weeks.  Abbey started school at Sammy's House on Jan. 7th because Mommy went back to work - she's doing wonderful!  She got a double ear infection too and had to take 2 kinds of antibiotics, but finally was able to get rid of it.  Caden had tubes too, so I'm sure Abbey will be next.  2008 is off to a great start - Mom's enjoying being back at work, kindergarten is going good for Caden, Dad's still enjoying his new position at Brink's, and the girls are moving right along at Sammy's House.

We're also so very thankful to Dan and Megan Carroll.  They got married on Dec. 31st, and in lieu of gifts, they asked their guests to donate to Upside of Down in order to help us send some more kids to camp this year!  That raised close to $650 - that's almost enough to send 2 kiddos to camp!  THANK YOU AND YOUR GUESTS SO MUCH AND CONGRATULATIONS ON YOUR NUPTIALS!!!!

March 2008
Presley is progressing wonderfully!  She had her assessment at school this week and it was such wonderful news.  She is so close to target of a typical child her age - just below in one area!!!  We are so blessed that she is healthy and progressing so well!  We purchased an RV last week and Jeffrey and I are going camping for our anniversary this weekend - without any kids!  The following weekend the whole family will be going on our first RV trip!  Caden is so excited!!!  We'll update with pictures soon!

April 2008

We are quite the busy family of 5 now - I guess you could say we're getting settled into our new, larger family!  We are so proud of all our kiddos - Caden is doing wonderful in Kindergarten, learning to read, write, count, add, etc. - teachers are amazing!  Presley is jabbering a lot more, a lot is still jibberish, but she tries to hard to get those thoughts out!  We still sign and really work to understand what she's trying to say in order to diminish the outbursts or tantrums - so far we're doing pretty good at learning this new toddler language :)  Abbey is rolling right around too.  She's eating baby food much better and rolling every which way!  This Sat. is the DSACT 4th Annual Skydiving Jump for Down Syndrome Awareness event in San Marcos!  2 individuals w/ DS are jumping too!  One all the way from CA!  Learn more at: www.dsact.com  Mommy's cousin, Carrie, had decided to SkyDive for Down Syndrome Awareness and has raised close to $800 in less than a week to support DSACT!  THANKS CARRIE!!  Upside Of Down is sponsoring a waterstop at an upcoming Shiner GASP ride (http://www.shinergasp.com/2008/shinergasp.php) to raise Down syndrome awareness among the riders.  This will be our 2nd year doing this and should be a lot of fun - it's on May 3rd.  My brother's employer, Ewing Irrigation, opened a new store in a suburb of Austin this weekend and designated Upside of Down as their charity of choice for funds raised at the Dunking Booth!  They raised $280 - this is enough to send a younger kiddo w/ DS to a Summer Day Camp that is held at Sammy's House - way to go Rob and Thanks Ewing Irrigation!!!!

 

Abbey Cate: 7 months and Presley 2 1/2

June 2008
1/2 of another year is already almost gone!  Crazy!  Speaking of crazy......parenting 3 kids is crazy :-) Things are going pretty good, just hectic, as to be expected.  Presley is doing fantastic.  She is really learning more complex concepts.  This weekend she had her little purse over her shoulder and said Bye Bye, then she went to the junk drawer in the kitchen and said 'tees', 'tees', I kept saying things that sounded like that and she kept saying 'No'.  She pointed to the junk drawer and said 'tees' again and I said, 'Oh, you mean KEYS', she said 'Yes'.  (We keep our keys in the junk drawer).  So I gave her some plastic toy keys and she sayd 'ok, bye bye'.  WOW - not only did she know where we keep the keys, but that keys are needed to go Bye Bye!!!  Maybe this is all typical for a 2 1/2 year old w/ Down syndrome, but we don't know what to expect, so things like this really excite us and show that she is really learning more and more and absorbing a lot, just can't communicate all of her thoughts!  She got some new shoes too that she just loves - she wants to wear them with her pajamas too, so we let her cruise around in PJs and tennies right before bed.  Watch out - a shoe obsession can be expensive!!!  Caden's last day of kindergarten is today :(  I can't believe he will be in 1st grade already - again people, time really does go FAST - enjoy your kids and don't worry so much about the dishes!  Abbey is doing great too.  She sits up on her own now, holds her own bottle (one-handed), gets on all fours and does a push up, but not quite ready to crawl yet....We've been camping quite a bit already this summer.  We went to Lake Georgetown over Memorial weekend w/ some friends.  There were a total of 9 campers and at least 20 kids - Caden had a blast!  Our next trip is at the end of June to Inks Lake!

August 2008
Well, sorry I'm a bit delayed with an update!  Three kids takes it toll on any extra time :)  Everyone is doing great and growing like weeds.  I truly think Caden grew at least 2" this summer - such a big boy now!  Abbey will be 1 next year and she's cruising right along the furniture.  She's staying with a family in our neighborhood now instead of going to Sammy's House and she's doing great!  Presley's language is just flowing like crazy....I told Caden that something was "awesome" today and she repeated, "awesome" - now that's awesome!!!  We went camping this weekend with lots of friends to Jellystone Park in Waller, TX.  Abbey stayed with Grammy, Jeffrey and Caden went down Thursday and Presley and I met them Friday after work.  It was a really neat place - a huge water park with slides, a petting zoo, putt putt, and there was lots of mud this weekend.  Caden and Presley had a blast playing in the mud - it rained off and on, but everyone still had a great time.  Mom's been busy helping to plan the DSACT Calendar Gala.  It's on Sat., Sept. 6th this year.  It's the debut of the '09 Share the Passion calendar, which shows wonderful pictures of celebrities and individuals w/ DS doing something together that they both enjoy.  Some of the celebrities this year are: Brad Pitt, Nolan Ryan, Sen. Kirk Watson, Andy Roddick, and more!  If you're in the Austin area, I hope you'll join in celebrating our success in launching another great calendar to promote Down syndrome awareness!  Don't forget the Buddy Walk is coming up too!  You can see Presley's Buddy Walk page at: www.active.com/donate/buddywalk08/presley08  Don't forget that if you're able to join Team:Presley that you select her team from the drop down menu when registering online!!!  Talk to you next month!

Presley is 3!

September 2008
It's Birthday month!  Presley will be 3 on Sept. 22nd and Abbey will be 1 on Sept. 25th....again, my how time flies!  We're having a joint birthday party this year and having a special appearance by Barney!  Presley is all about Barney and Elmo these days -- I can't wait to see her expression when she sees Barney at the party!  Caden is doing great in 1st grade.  He says he's ready to learn more and stop reviewing Kindergarten work though :)  We got a dog this weekend!  Jeffrey's brother moved into a condo w/out a backyard and we were fortunate enough to get her.  Her name is Cali and she's a 4 year-old Golden Retriever.  She is SO well behaved and all the kids just love her.  She's Caden's new best friend - she sleeps in his room, he wakes up early to feed her and play with her, and plays with her all evening after school.  It's just great!  I put her outside the other day after being inside for a while and Presley came up to me and signed "more" and said "puppy"....too sweet!  This election is really interesting for me....I will just say it as it is.....I am a McCain supporter and am really intrigued by Sarah Palin.  I'm honestly a bit annoyed when people assume I'd vote for him/her just because she has a child with Down syndrome - do they really think I'm that shallow???  Anyhow...I can only hope that if McCain/Palin are voted into the White House that it will bring more awareness to our nation about Down syndrome!!!  So, on another note....The Down Syndrome Assoc. of Central Texas "Share the Passion" calendar gala is this Sat. - Sept. 6th!  If you're in Austin, we'd love to see you there!  The calendar showcases individuals with Down syndrome and celebrities doing something together that they both enjoy!  This year we have Brad Pitt - can you believe it!!  He and little Nasrine are playing the guitar together - it's so cute!  We also have Nolan Ryan, Los Lonely Boys, Andy Roddick and many more!  You can order your calendar online at http://www.dsact.com/  Just follow the links to Share the Passion Calendar!!!  I'll add pictures after the girls' bday party and don't forget to vote Nov. 4th!!!

Ok, so I'm sitting in bed typing this entry while watching the Republican National Convention, listening to Sarah Palin speak.  I have the chills by what she just said, "to families with special needs children across America, I have a message for you.  For years you've sought to make America a more welcoming place for your sons and daughters, and I pledge to you that if we're elected you will have a friend and an advocate in the White House."...I can only imagine the possibilities!!! 

October 2008
We had a fun weekend of camping this past weekend....except for the fact that Abbey got sick and had to go to the ER :(  She had a case of croup, but is ok now!  We went to Pecan Park in San Marcos and it was just beautiful!!  We're so excited about the Buddy Walk coming up in a few weeks - we've got 35 walkers so far, hopefully we'll get more before the walk so that we can keep up our 'most walkers' award!!!  The last 2 years we've had over 100 walkers.  Presley's language has just exploded over the last week.  She'll repeat just about anything you tell her (that wasn't a really good thing when mommy reacted to OU scoring the first touchdown agains Texas last weekend :)  She says just about every family member's name now, loves her backpack, and likes to tell her siblings and mom and dad what to do.  It's really cute because she's this tiny little troll and so demanding, but we need to make sure she doesn't get away with it because it really won't be too cute for that long!  She has lots of doctors appointments following her 3 yr check-up.  She may need glasses, she needs her teeth checked (who knew that DS caused teeth to come in super funky), her ears checked - 1 tube fell out, and she will get some routine and some new bloodwork done because she isn't on the DS growth chart yet :(  Hopefully it's just because she's a petite little girl!  She had a good time at her and Abbey's bday party, except Barney scared the heck out of all the kids.  Presley's cousin, Casey, did a great job as Barney though!  Go Horns Go and we'll check back in after the Buddy Walk on Oct. 19th!

Check out this awesome article about a Dallas girl with Down syndrome who won Homecoming Queen at her highschool and was voted on by her peers!!!  If you can't click on link to view, then copy and paste into new browser.  http://www.dallasnews.com/sharedcontent/dws/dn/latestnews/stories/101208dnmetqueen.39be68a.html

ENTRY II
We also got the results from Presley's bloodwork yesterday.  Her TSH (Thyroid Stimulating Hormone) levels are elevated.  Hopefully this is the reason for the fact that she isn't growing much...she's not even on the Down syndrome growth charts anymore and her 1 yr old sister is now only 1" shorter and 1/2 a pound lighter than her and no, Abbey isn't unusually big for her age - 50th percentile :(  We go to an endocronologist on Dec. 1st for further investigation into this 'out of the normal range' levels.  The good thing if this is the reason for her minimal growth is that it can be treated with meds.  The white blood cell count results were great - a nice dose of good news!  Remeber leukemia is fairly common in kids w/ DS, so they check that every year until age 5 or 6, I think.  A boy with DS in Austin and member of the local DS Association was just diagnosed w/ Leukemia...please keep him in your prayers for a speedy and full recovery!  Both of her tubes are now out so we need to go back and have new ones put in.  We're debating on waiting to see if her language suffers or ear infections increase before deciding to put them in right away.  Eye and dentist appoint for in early Nov. - will keep you posted. 

The Buddy Walk was a great success!  Tons of people showed up to show their support for Down syndrome awareness and Team Presley won the 'most walkers' award for the 3rd year in a row with 72 walkers!  It was much closer this year though - last year we had 113 walkers!!  Our theme was Team Presley for Peace and we all wore Red, White, and Blue and carried little American flags. 


December 2008
Update coming soon, but here is an amazing story that Caden wrote today.  Dec. 15, 2008... 
December 2008
Well, sorry I missed a November entry - HAPPY THANKSGIVING and MERRY CHRISTMAS and HAPPY NEW YEAR!  Everything is going great here, we just enjoyed a wonderful Christmas w/ family and are winding down now and the kids are enjoying new toys and old ones too :)  We don't have Presley's bloodwork results yet - the endocronologist we found and loved is leaving for a new opportunity in Phoenix, so we need to get in w/ a new one....Will keep you posted.  Presley is talking so much more these days.  Jeffrey taught her to put her finger near her mouth and laugh like Dr. Evil (from Austin Powers movies) and it's so hilarious.  The other day he kept doing it and she kept saying "Not Funny, Not Funny"....we did catch that on video!  Whenever he sings she says "Stop Singing" too :)  If Bubba sings though, she likes it.  Abbey is almost same size as Presley now - we got her fitted for some shoes yesterday and she's a 5 and so is Presley - should get her measured though too, probably a 6 now.  She's into taking her pants and diaper off by herself too...Not good when it's a poopy one though - some lovely carpet stains from that....at least she brings us a new diaper and says "poo poo" though.  Maybe soon she'll learn when she's ABOUT to go potty!  We hope that all of you are doing well and stay in touch via the guestbook or email and THANKS again for being a part of this site for 3 years now!!!!

JANUARY 2009
Okay, I know this is suppose to be about Down syndrome and Presley's Progress....but, I've got to brag on Caden for a bit now!  Caden got the top 1st grade reader at school and has been nominated for the Gifted and Talented program at his school!  He is really excelling at school and just doing amazing!  They got a packet of reading and comprehension homework to do over the holidays and he did it all the night before break and took it to school the next morning!  hhhmmmm, I just say that's smart so that he doesn't have to do homework over the holidays :)  He is too smart for his own britches sometimes....we'll tell him not to throw a ball in the house and he responds with, "I didn't throw it, I tossed it."  We FINALLY got Presley's blood test results today.  All of her results were within range, which is good, yet a bit frustrating for me because I have a hard time swallowing the fact that 'she's just small.'  We'll get one more opinion before I'll accept that answer.  Good thing is that she is doing so good with her speech and comprehension.  She gets her 3rd set of tubes in Wednesday (Jan. 14) - we've noticed some distortion in her speech and this should help.  Ms. Abbey Cate is doing well too - she's finally becoming a bit more independent and not always wanting mommy to hold her!!!  She's really starting to talk more too!  My sister-n-law's nephew, Ty, is 6 yrs old and has been dealing w/ a lot of health and medical issues over the passed year - he is back at the Mayo clinic for more testing and to get a feeding tube put in - keep little Ty Henry in your prayers, please!!!

ENTRY II
Jeffrey and I are so excited to tell you that we've finally completed ALL of the paperwork for our 501c(3) non-profit status for Upside Of Down!!!!!!!!!!!!  Keep your fingers crossed that it gets accepted the first time around!!!  My understanding is that it can take months and months to get a response from the IRS on these :(  It is such an accomplishment though to have it completed and in the mail!!  WOO HOO....What does this mean???  Well for starters, any donations we receive will be able to be tax-deductible - great news for all of you :-)  Also, all of the money that we spend out of pocket for this website, all the bracelets that we order and mail out will be able to be covered by funds we raise as well.  BEST OF ALL....it means we're even more eager to raise money to send even more kids, so why wait?  We're organizing a kick ball tournament to raise money to send at least 2 individuals to Down Home Ranch in the summer.  The tournament will be sometime between March and May - right now it all depends on when we can get fields donated!  In the first week of telling our friends and family about it, we met our goal of having 10 teams with 10 players each!  Check out the kickball page with all the details - we'd love to have you join us!!

FEBRUARY 2009

Caden learned about MLK Jr. last month and had the sweetest take on him and what he did for our country.  Here is how our conversation went last night:

Caden: "Mom, I love Martin Luther King, Jr."
Mom: "That's great honey, why?"
Caden: "Because I'm white and my best friend, E'Shun is brown.  If Martin Luther King, Jr. was never born, then E'Shun and I couldn't be friends!  I love him for that!"

MARCH 2009

We are so very excited to tell you that our application for 501(c)(3) non-profit status was accepted the first time around!!!  We are no OFFICIALLY a non-profit corporation recognized by the state and the federal government!!!!  This is a huge milestone for Jeffrey and me!  We have our first fundraiser on March 29th.  It's a kickball tournament to raise money to send even more individuals with Down syndrome to summer camp!  We have 12 teams with at least 10 players each - it should make for a great time!  We'll post pictures afterwards!  Thanks for all of your continued support!!!

APRIL 2009

Sorry we are a bit delayed at sharing kick ball tournament results on this section - hopefully you saw it on the kickball link!!!  We raised close to $4,000!!!!  We had 12 teams and an amazingly fun and competitive 1st annual Upside Of Down kickball fundraiser!!!  So, here's the breakdown of the campers!  We are sending 3 kids with Down syndrome to summer camp with full, $500 scholarships - 2 to Down Home Ranch in Elgin, TX and 1 to Camp Wonderland in Missouri.  We are also sponsoring 5 kids with Down syndrome at $250 scholarships to Down Home Ranch!  We are so blessed to be able to help this many kids experience summer camp!!!  Thank you all so much for your continued support!!!!!!!!!!

So, we are moving this weekend and are so excited about it!  We wanted to move to a different school district that would be more inclusive for Presley so we put the house on the market in early March, hoping that it would sell before the fall school semester.  The avg. time on the market in our neighborhood is 7-12 months!  God was watching over us and our house sold in 2 weeks!!!  We close on April 30th and will be in our new home in Round Rock, TX - Leander ISD by Friday!  Presley visited the new school for 6 days and did a great job!!!  She had to visit for an evaluation, but will start full time in the fall.  Caden wants to start earlier, so he'll transfer on May 4th!  We're still looking for care providers for Abbey Cate :)

June 2009

Wow - lots of changes have happened in the last 2 months!  As you know, our house sold and we moved!!!!!!!!!  We have such great neighbors and love being so much closer to things like a grocery store, Target, Home Depot, etc.  In Manor we were at least 20 min. from those things!  The new house has stairs and a trampoline, so Presley is getting some additional therapy there just from those two things!!  Caden wanted to start the new school with a month left so that he could meet new friends.  He is absolutely loving it!  He is finishing up 1st grade there at Parkside Elem.  Presley will go there in the fall.  She visited the ELE (their version of PPCD) program for 6 days last month and did qualify for the program.  She still asks for Aubrey (who will be her new teacher).  We had our first ARD meeting and it went well.  We are excited that so many measurable goals on on Presley's IEP (Individual Education Plan).  She will get OT and Speech Therapy while at school and we plan to continue with private therapy as well.  I think Caden is thrilled to have one of his little sisters as his same school next fall too!  Abbey had to leaver her old babysitter, Ms. Veronica and stayed with Grammy for 3 weeks and now has Ms. Becky.  Becky is a friend of my sister n law's and was in a position to stay with Abbey, so agreed to take on the challenge :-)  Abbey is doing great with her and with the 1:1 attention, she seems to be a bit more calm!!!  Becky's sister also has Down syndrome and she wrote a story about her experience at Down Home Ranch - check it out on the Summer Camp page!  Presley is continuing to talk so much and as hesitant as I am about potty training, she is definitely ready.  She'll ask to go potty a lot and she does sit on the potty, just doesn't go in it :)  She then loves to get dressed again and wash her hands.  She usually says she has to go right after she went in her diaper....in due time!

As I mentioned we love our new neighborhood, but there is an HOA that has rules and such, which is a good thing in our eyes.  However, about a week after being there we got a violation letter for displaying a sign in our yard w/ this website on it.  It looks just like the picture above this entry.  I called and talked to the mgmt company and she explained why it wasn't allowed and I proceeded to write a letter to the HOA Board and am thrilled to tell you that our sign is back up now!  They approved this exception and the UPSIDE OF DOWN sign will stay!  Normally it wouldn't be up, but I wanted to educate our new neighbors about Presley and Down syndrome!  We've already received one email from a passer-by who saw the sign!!!  It works!!!

July/August 2009

Well, I missed July - sorry to our avid followers!  It's been a busy summer!  The whole family is doing great!  Presley's verbal skills are just soaring and we are so greatful for that!  She uses so few signs now and they are really just in addition to her words.  She says "more" but when she really wants it NOW, she'll sign with the word.  She's finally gaining some weight now too.  I don't what she weighs, but I can tell that she's quite a bit heavier than Abbey when I pick her up and they used to both be 23 lbs!  We are so excited about her starting school this fall!  She has 3 more weeks at Sammy's House, but we will miss them tremendously!  We attribute so much of her progress to Isabel and her team there!!!  July was a fun month for everyone, but a little sad in that Caden was with his dad for the whole month :(  He went to FL with him though and got to see his grandparents, so had a great time.  The girls, me and my mom went to Indiana and Michigan for a week for a Landis (mom's side) family reunion and my great aunt's (my dad's aunt) surprise 80th Bday Party!  Jeffrey then met us there for the weekend and had an awesome time, mainly because he got to introduce the race that my cousin races in (stock cars) and say the famous words, "Gentleman, start your engines!"  He is still gloating from that!  My aunt Lucy was so surprised to see us!  That's her up above with Presley!  The weather there was absolutely beautiful - low to mid 70's!  It was a nice break from this Texas heat.  The only problem with our trip was that Ms. Abbey screamed the entire time on the plane to and from Indiana.....yes, she was 'that' kid :-)  I'm busy with helping to plan the 2010 DSACT Calendar Gala.  It will be on Sat., Sept. 19th from 5-9pm at Rough Hollow Yacht Club this year - hope to see you there - it's Free, Fun, and for a great cause ~ Down Syndrome Awareness!  Have a great rest of your summer, and we'll talk soon!

September 2009

Fall is in the air and school is back in session!  Ms. Presley is doing amazingly well at her new school!  She met w/ her new teacher at the new school back in May for an evaluation.  All summer she kept saying she wanted to go to Aubrey's house (her teacher is Aubrey).  I told that maybe some day we'll go to her house....even after school started, she kept asking to go to her house.  I thought this was so strange because she'd never even been to her house before.  On about the 4th day of school; I pull into the parking lot and Presley says, "Yeah, Aubrey's house!!!"  I just started laughing, she thinks that the school is her teacher's house :-)   Too cute!  Needless to say, she is loving Aubrey's house.  The first week of school Caden and I walked her to her class and by the 2nd week, we were dropping them off at the flagpole and Caden walks her in.  She doesn't even turn around to say goodbye.  She just makes sure that she has her backpack on, is holding her Bubba's hand and walks into school :(  Such a big girl!!!  She starts a reading program with DSACT this month and I'm really looking forward to it.  It's a method that is proven to be effective for people with Down syndrome.  I'll keep you posted.  The 2010 "Share the Passion" calendar gala is coming up on Sept. 19th!  It's a big party to launch the 2010 DSACT calendar.  I've put in lots of hours along w/ others to plan the event, so it's such a huge relief and feeling of gratification once the gala is here and gone!  The girls' birthdays are coming up already too - Presley will be 4 on the 22nd and Abbey will be 2 on the 25th.  Have I really been typing here for 4 yrs?  Wow!!!  Caden is doing awesome at school too!  He's part of the Quest program, which is our school district's program for what they call 'Gifted and Talented'...don't worry, I argued that all kids are G&T, maybe just not academically :)  He's such a smarty and at times a smarty pants!  Next month is the Buddy Walk here in Central Texas, so don't forget to register for Team Presley at http://www.dsact.com/!!!

October - December 2009

Well, yes, a few months have now passed since I've posted an update - so sorry!  Life gets really busy sometimes!  We had an excellent turnout at the Buddy Walk for Team Presley!  For our 4th year in a row Team Presley had the most walkers!!!  At least 1/2 of them were first time walkers too - that is just awesome!  Thanks to everyone how joined us in showing support for Down syndrome awareness!!!  School is still going wonderfully for Presley!  She loves her teachers and still thinkgs school is her teacher's house - each morning she says, "we're going to Ms. Aubrey's".  She's getting in the groove with her new therapists at school and outside of school.  All else is checking out well too - bloodwork in Sept. was normal, eyes are doing pretty good and we're still working on getting a good hearing test.  She doesn't like to cooperate for those :)  I think her hearing is just fine though!  Her speech seems to be not quite as clear as it's been and she doesn't need new tubes since her canals have finally grown and are more open, so we're trying to see if it's her hearing. 

Presley was Dorothy from Wizard of Oz for Halloween and had so much fun trick or treating with her cousins!  She was so excited to get to eat some candy!  Abbey was so funny too, she got a piece of candy that I guess she didn't think she'd like at one house and through it back in - SO FUNNY!!!  I don't even give her candy, so I have no clue why she thought she wouldn't like it!


Christmas - we had another blessed year and Christmas season!  Presley really got into the holidays this year.  She LOVED singing Jingle Bells ALL THE TIME and wanted to continue opening presents.  Why in the world would it only be one day????  Our tree was up for a few days after Christmas and she kept asking where the presents were...

2010 will bring new challenges and new miracles to our family without a doubt, but we are looking forward to spreading more love and awareness of Down syndrome and living life to its fullest!  Thank you all for joining in our journey!

 

January 2010

HAPPY NEW YEAR!!!  I hope you all had a safe and fun holiday season and are excited about a new decade of adventure!  Christmas was great for our family and we're busy planning for our 2nd annual kickball tournament!  We still need a few teams and would love to have new players!!!  Check out all the details on the kickball page!  As soon as we get the date nailed down, we will be sure to post it!  We are trying to get fields donated and will then be able to get those details!  Why the heck a kickball tournament?????  It's a fun and different way to get a bunch of adults together to 'play' for a great cause!  Last year we raised enough from this tournament to send 8 kids to summer camp and we'd love to be able to do that again this year and maybe even double that #!!!

February

Kickball Tournament details:
When: Sat., March 6, 2010
Time: 10am - 5pm
Where: WAYA Ball Fields at 1200 Cesar Chavez
Details

CAMPER FOR SALE!

MARCH 2010

Thank you all so much for your support of the 2nd Annual Upside Of Down Charity Kickball Tournament! If you were there playing, watching or just there in spirit - we truly appreciate it!!! 

We had an awesome turnout and the teams had a lot of fun - sounds like everyone is moving a bit more slowly than normal today though! Thank you so much to our team captains for organizing their teams and helping to sponsor more campers this year!!!!

Our proceeds doubled that of last year - which means we will be able to sponsor even more campers!!! Thanks to all of you, we raised just over $7,000!!!! We don't even have enough local campers at this point, so we're going to open it up to send campers in their home states!!! That is awesome!!!!!

This year's location was new, experienced kickball umps were new, raffle prizes were new, kids' activities were new, and we were able to get a lot of donations for the event - all in effort to keep it growing and improving every year!! I forgot to mention all of them at the tourney, but Southside Market in Elgin donated the food, Dick's Sporting Goods donated the balls and $150 in gift certificates, WAYA donated the fields too!!! Plus the raffle prize baskets totaling $1600 were made up of gift certificates donated by so many local stores, restaurants, golf shops, hair salons, etc.!!!! Congrats to Leigh Anne Funk and Dana Williams for winning those!!!

BIG BLINDS won the 2010 Upside of Down Championship GOLDEN KICKBALL and the $100 gift certificate to Abel's on the Lake!!! Congrats - y'all rock!!! 

There are some great pictures online - check them out at:http://web.me.com/merrittfunk/MerrittFunk/kickball.html My dad got some really great shots of all of the teams!!

Thanks to Jeffrey's family for working the food station all day long and for securing the awesome Southside donation!!!!

Mark your calendars for next year - sometime between first weekend of March and 1st weekend of April 2011!!! 

Thanks again for all of your support!! Keep up with us on our website - www.UpsideOfDown.org 

Lots of love, 
Teana and Jeffrey
 April 2010

Presley is learning so much at school!  We feel truly blessed to have ended up at Parkside Elementary!!!  Her teacher, Ms. Aubrey, and aids: Ms Mary and Lesley are just awesome!  They go above and beyond any expectation ever!!!  Last week Ms. Aubrey asked me, "Do you mind if we start working on potty training?"....do I mind????  Heck no - I'm dreading it!!!!  Anyway, no accidents the first day, just a couple since.  So, we are potty training at home to and Abbey (little sister) is SOOOO getting into it!  She is so motivated by the single M&M that she'll keep going back every 30 seconds and somehow squeezes the littlest bit out, just for another M&M.  Presley could care less about the reward, she just likes to run to the potty when she hears the time go off and loves the praise!  It's going great!  Caden is jealous that he doesn't get candy for going potty....hhhmmmm, maybe I could use candy to get him to do other things!!!  Now that's a good thought!  Presley also takes such great pride in feeding our dog!  I try to help her and she just keeps saying, "I do it, I do it myself"!  Therapy is going great too - she can id all numbers 1-10 by sight and can count, say her ABCs and id some letters - it's great!!  Her sentence structure is really improving too.  I think because Abbey talks so clearly and only use complete (and then some) sentences, Presley picks up on that and learns from it.  Easter is coming up Sunday and we have a couple of egg hunts planned; it should be a lot of fun watching the kids this year since they can really get into the hunt aspect of things.  We have 4 campers secured so far for this summer and hope to get more!  If you know of any groups that could help us spread the word about our camp scholarships, please let me know or send them to our website - check out the summer camp page!
 JULY 2010
Sorry that I haven't posted in a few months!  Mommy is super swamped at work and I feel like I have to schedule time to do anything extra!  Seems like a lot has happened sine April though!  Abbey and Presley's nanny, Becky, left at the end of May and decided not to come back after she had her baby in July (she had a baby girl named Cate Elisabeth) - can't help but wonder if it was after Abbey CATE and Presley ELIZABETH :)  Becky and baby Cate are doing great!  The girls had a couple of teens watch them over the summer and had a blast!
OCTOBER 2010
Whoa!  Lots to update you with!  You've probably figured most of it out sine I am so delinquent at updating, but here's the deal anyway :)  Mommy was in India for 9 days in Sept. and everyone was sooo happy when I came home - especially me :)

Presley started school on Aug. 23rd!  She is loving her teacher and aids again this year.  The one big change is that she rides the school bus this year!!!  SHE LOVES IT!  When it comes and if Jeffrey or I dare to walk her to the bus when the door opens, she says, "Stay there, I do it myself!"  Yes, she is little miss independent!  She surprised us one day at lunch, I wrote her name on a piece of paper and she pointed to each letter and said, "P-R-E-S-L-E-Y"!!!  We had NO idea she could identify letters!  Later that nigth she looked at my shirt and pointed the letters on it and said, "C-O-K-E"  Now we give her random words and sure enough, she can spell them!!  This is so awesome and we are so very proud of her!

After school (11:45am), Presley goes to Brushy Creek Motessori school.  She is doing really well there too and I think that is really helping her with letters as well.  Abbey also goes there now since our nanny left in May.  She is doing okay...not great.  She is really having transition issues :(  Caden is in 3rd grade at the same school as Presley and is loving it!  He actually said that he wishes school was 7 days a week - WHAT!!!!!!

The girls each had a birthday at the end of Sept.  Presley turned 5 yrs old on the 22nd and Abbey turned 3 (going on 16) on the 25th.  We just had a little party at the house with family and the girls' 2 best friends, Olivia and Emma (our old neighbors). 

Exciting that Presley's picture was also selected for the NDSS Times Square Buddy Walk Video!  It aired in Times Square, New York on Sat., Sept. 25th.  The video can be seen on the NDSS.org site, click on Buddy Walk and then MEDIA.  As of today, the '09 video is still posted and it says the '10 video is coming soon!

A friend of mine and a great advocate for people with Down syndrome, Lori Tullos Barta, passed away in Aug. of this year.  She died from complications during a fairly routine heart surgery.  She served as president of DSACT (Down Syndrome Assoc. of Central Texas) 2 consecutive years and was responsible for bringing an amazing Learing Program to the kids of central Texas with Down syndroe.  You can learn more about Lori and the legacy she left behind at the following site: http://lori.dsact.com/

The 11th Annual Buddy Walk in Central Texas is just a couple of months away, and it's time to sign up for TEAM PRESLEY!

This will be Team Presley's 5th year at the Buddy Walk and we really want to make this a special year and spread even more awareness and promote acceptance in our communities!

All of your registration fees go back to the Down Syndrome Association of Central Texas (DSACT). DSACT has been such an amazing source of support, information, advice, education and social interaction for our family and Presley. It is a non-profit organization that depends on donations and events like the Buddy Walk to continue service Central Texas families the way it does. It is so instrumental that I heard a family the other day say they are moving to Austin because of all that DSACT does in terms of education and helping parents to advocate for what their kids are legally intitled to - pretty impressive!!!

Our theme this year is GO TEAM GO! So, show up in your fan fare and colors to support your favorite college or pro sports team. We'll even accept Aggie colors this year :) You can visit Presley's team page at: www.active.com/donate/buddywalk10/TRoss41



The Buddy Walk is at Reunion Ranch in Georgetown again. It's Sunday, Oct. 24th from 12-4. Your registration fee includes lunch and a tshirt too! Register online at: www.DSACT.com and follow the Buddy Walk registration link; be sure to select 'Join an Existing Team' and choose TEAM PRESLEY from the pull down menu. Ever since we started doing the Buddy Walk (right after Presley was born), we've won in the category of 'most walkers'!!! Please help us to continue that streak for our 5th anniversary of the Buddy Walk!

 Video of Presley spelling her name out loud and pointing to each letter!!

January 2011
Happy New Year - Presley's 6th New year, that's right she'll be 6 this year!  For those avid readers of this blog, I apologize for lack of entries lately.  Life has gotten in the way of me finding time to update you!  Our Christmas season was great and the girls and Caden had a blast over the holidays!  Presley absolutely loved seeing and talking to Santa!  I was at church yesterday reflecting on the past few years with Presley and wanted to share some of my thoughts with you.  Let's start with this: about a month ago, Caden said to me, "Mom, it's good to have a kid with Down syndrome.  Presley obeys you and can entertain herself."  Well, if only he and Abbey could learn from her, I thought to myself.  But you know, I realized yesterday how much I can learn from her as well.  I always talk about other kids learning from her in regards to acceptance of others, but even us adults can learn from her - especially mom since I have the privelage of daily interaction.  Presley can look outside on the gloomiest of days and think, yuck it's rainy or cold, but instead, she gets so excited and comes and tells me that it's raining, we use umbrellas when it rains!  When one of the kiddos falls or gets hurt, they yell, "You pushed me, you're so mean" or something along those lines.  When Presley falls or someone else does regardless of the reason, she says, "I'm ok or even better, are you okay?  do you need some ice?"  Notice the lack of negativity from Presley.  She sees everything she does and everything around her in a positive light.  Can you imagine a world where everyone did that?  I'm going to start trying to be more like my daughter!  I also said to my husband the other day, Presley is our child with special needs, however, it's the other two that require the most attention.  Don't get me wrong, Presley loves and needs 1 on 1 attention too, but the others behave as if the world has gone wrong with out constant attention.  Interesting to me that the generalization is that people with Down syndrome require lots of extra work.  I know she's only 5, but at this time in life - she requires the least at home and is still so successful in all that she does.  It took me 5 years to get to this point and I hope that new parents of babies with Down syndrome, will realize life will get better, the sorrow will fade.  Speaking of sorrow, I feel the need to share my initial feelings after having Presley because they weren't this good.  I want anyone reading this to know that it's completely normal to have sad and mad and just a roller coaster of negative emotions when you first learn your child will or does have Down syndrome. 

I had Presley about 20 minutes after my water broke and we were at the hospital.  I didn't have any early testing done for disorders and all of our sonograms looked great, so of course, I was expecting a perfectly healthy, 'normal' baby to be handed to me after I delivered - just like with my first born, Caden.  When Presley was born, I remember the Dr. saying that it was the shortest umbilical cord he'd ever seen (more on that later).  I think my husband cut her cord (can't remember) and then they handed her to me.  I looked at her and time kind of stood still.  I just kept thinking to myself, wow, her face is so round....why is that?  I didn't know 'what' Down syndrome 'looked like' in infants, but I just knew something was different.  I just stared and kind of tuned everyone and everything else out.  My husband took her then the nurses did to do the typical tests.  My husband whispered in my ear, which name do you think she looks like?  We were debating between Avery and Presley.  I didn't answer.  So, he said, how about Presley.  I nodded, ok.  He said, tell the camera what her name is - I couldn't talk.  BTW, all this is recorded and I just cannot watch it just yet.  So, he told everyone and the camera that her name is Presley Elizabeth.  I think I smiled just to look happy, and I was, I just felt 'different' about her.  Jeffrey went to the nursery with Presley and everyone else except my mom left the room.  We were talking about how great I felt and how fast this delivery went.  I think I seemed just fine, just was curious about that round face.  I didn't verbalize that to anyone at this point though.  Then, my husband comes back to the room with the reddest face ever and eyes full of tears.  He asks my mom to leave and I say, no.  My husband is a very emotional guy - we even practiced not getting 'too' emotional at our wedding and at Presley's birth - he did great by the way :-).  I figured she was missing a finger or toe or something, yet he thought it was detremental, afterall, this was his first born.  He again asked my mom to leave and I pressured him to tell both of us what was wrong and why he was crying....He finally said, Dr. Mirrop (our beloved pediatrician) thinks she has Down syndrome.  I am sure my mom hugged me and then she left Jeffrey and I alone.  We cried and I just kept asking, what, why, how does he know???  Meanwhile, I could get her very round face out of my mind.  It wasn't but a few minutes later and Dr. Mirrop came into our room.  He said that physical characteristics make him believe that she has Down syndrome, but blood work would confirm this.  I'm sure he told us more, but I don't recall what.  He asked the nurse for some 'Seton Stationary' aka a napkin.  He asked for the best number to contact us at.  Jeffrey gave him my cell.  He then told us that a geneticist would come talk to us about Down syndrome at some point and that they'd do an echo on her heart because about 1/2 of babies with DS also have heart issues.  After he left, I remember being in the bed still in the delivery room and Jeffrey's sisters and mom had come back from lunch because Jeffrey called them.  I saw Kelly in the hallway with a face full of sadness and I just looked at her in the hallway through that hospital door with the same look of sadness nodding my head no.  I was thinking, don't be sad, she doesn't have Down syndrome, it's all ok!  They did the echo a few hours later and I had to leave the room because she was just screaming and didn't want to be in that cold crib having the dr. probe her like that.  I was thinking to myself, she might have Down syndrome, something is going to happen to her, you're hurting her!  Thank God, results showed an absolutely typical infant heart!  Another indicator that possibly she didn't really have Down syndrome and she'd still grow up to be that cheerleader I envisioned with "Presley" on her megaphone.  The geneticist ended up coming by and brought so much negativity to having a child with Down syndrome that I really thought, how could I raise a kid with Down syndrome with all these issues that she just described!  I was warned my Dr. Mirrop that she didn't have the best bed side manners, but man, she was just a BI*C*!  Pardon my French!  Dr. Mirrop came back by later that afternoon and was talking to me and Jeffrey.  I asked him, so you say you see signs of Down syndrome, but we won't know for a week if she really does, so why do you really think so?  Some of those characteristics are just like mine - e.g. the larger space between big toe and 2nd toe.  I said, give me a percentage.  He said, 99.9%.  BOOM, the world came crushing down, my 1st daughter and 2nd child has Down syndrome.

Just about then another wave of visitors came.  My brother Robi who I love so much and his wife, Jeffrey's brother and girlfriend and the rest of our family was still there.  I wanted them all to leave so bad, but I couldn't say that.  People: I just found out that there is a 99.9% chance that my baby has Down syndrome, so really, I just found out that my baby does HAVE DOWN SYNDROME.  My phone was ringing off the hook, but I didn't answer it - friends just wanted to congratulate me, but I didn't want that, I think I wanted condolences.  I went into the bathroom for some privacy.  Robi came near and I cried on his shoulder and told him what the dr. said.  He just listened and hugged me.  It's real now.  Shortly after people did start leaving, I desperately wanted them to stay.  I couldn't be alone with Jeffrey and this baby.  What do we do?  I mean, she has Down syndrome.  Jeffrey's sisters Kim and Kelly asked if they could pray over us and they did.  It was a beautiful, peaceful moment.  It didn't last long though.  After everyone left and it was me, Jeffrey and the baby I felt so alone and afraid.  I just cried and cried and cried.  I didn't sleep at all that night, I just cried uncontrollably.  I had the baby stay in the nursery because I didn't know how to care for a baby with Down syndrome.  In the early morning hours, one of my OB's partners came in to check on me.  He asked how I was doing and I said, horrible.  I cannot stop crying and my baby has Down syndrome.  He said he usually brings his daughter with him on calls. She is a cancer survivor and cheers people up.  Normally I would have thought how wonderful that was, but not this morning.  

The next day one of my best friends kept calling and I kept ignoring her calls.  She just had a baby 2 months earlier that didn't have Down syndrome and I just couldn't bare to see him now.  I didn't want to see her or him.  To my surprise, she, her husband and their 2 month old baby just showed up that evening.  I felt enraged inside.  How dare she bring her 'normal' baby around me when my baby was just born with Down syndrome????  She didn't even know about the Down syndrome yet.  She just loves me and wanted to see our precious new baby girl.  They came in and Jeffrey and I were just talking with them and had Presley there too.  We were just shooting the breeze and then when they inquired about how everything went, I broke down and told them that they think she has Down syndrome.  Jeffrey and I had been doing a lot of talking that day and I held my Presley almost all day just staring at her.  If I was holding her and seeing her, then I felt better.  We told our friends that we came to the conclusion that God had this little girl's spirit and needed to find the perfect parents for her and we were so blessed that he chose us.  I thank God that they came by now, I realized that talking about it helped!   Again, as long as I held her and could see her, I felt this way.  This lasted for months and months.  If she was out of my sight I was so fearful about the future and the here and now and everything.  Now, even if I'm away from Presley, I know that God chose us for her!

We left the hospital after two days and Presley slept on my chest for 3 months :)  I couldn't let her out of my sight.  We were at the pediatricians office almost every day after we left.  On about the 3rd day, Jeffrey asked if he'd heard anything about the blood work yet.  He said no and pulled a napkin out of his shirt pocket.  This is still the best number to call you on, right?  He carried that 'Seton Stationary' with him each day so he could call us!  Jeffrey was sold on Dr. Mirrop from that day on!  A few days later I was home alone on the couch sleeping and I got the call confirming she had Down syndrome.  I said ok, is it the hereditary kind?  I wanted to know just in case.  They said no, just a fluke.  I was ok with this news because I already knew she had Down syndrome.  I let Jeffrey and family know, but it was no big news.  I guess we all knew it.  Just before I went back to work in January I created this website to help educate others about Down syndrome so that Presley would be more accepted.  It was so incredibly therapeutic for me.  We ordered the UPSIDE OF DOWN bracelets and they came in on Christmas Eve.  Just in time to wrap them with a picture of Presley and give them to Jeffrey's family members at our traditional Christmas eve celebration.  I never would have imagined that 5 yrs later I'd have shipped hundreds of those bracelets all over the world (as far away as Lithuiania) and to so many people who just want to raise awareness, have a child with Down syndrome, lost a child with Down syndrome or just want to support Presley!  Thank you all!! 

I hope that this helps to bring hope to any new parents or soon to be new parents with Down syndrome who happen to be reading this!  I talk to and get emails from so many new/prospective parents and just want to share this with you. 

 FEBRUARY 2011

The 3rd Annual Upside Of Down Charity Kickball Tournament is just around the corner - Sunday, April 10, 2011.  Click here for all the details!

April 2011

The 3rd Annual Upside Of Down Charity Kickball Tournament was a HUGE success!  Thanks to all the teams that played and raised money for our cause and all the friends and family that came out to watch and participate in the raffle and silent auction!!  It was a beautiful day for a tournament and we had 6 of 12 teams that joined for the 1st year - this is great for raising awareness!  We've already committed to sponsoring 4 campers here in Austin, helped an organization that helps US families adopt children with DS from other countries to avoid going to an institution, donated to Camp Summit near Dallas to help even more kids and adults with DS go to camp!!!  We've been able to help so much so quickly because of the amazing donations we had this year!!!  It warms my heart to see that people are still willing to give so much even in hard economic times! 

I send out press releases to the local news stations each year, but this is the first year that one of them showed up!!!  I was ECSTATIC when I got the call that morning!  Your News Now (YNN, formerly News 8 Austin) showed up and filmed for about 2 hours.  We've received a few emails from the story that aired!  One of the emails was a ministry group wanting us to come educate them about Down syndrome!  How exciting!!  Jeffrey and I will go talk to them tomorrow!  You can view the news story online at: http://austin.ynn.com/content/top_stories/277730/family-helps-others-see--upside-of-down-syndrome

My dad and cousin also took lots of pictures this year - you can view them at: http://web.me.com/merrittfunk/MerrittFunk/Kickball2011.html  and  https://picasaweb.google.com/lh/sredir?uname=carrierad&target=ALBUM&id=5594361597120762225&authkey=Gv1sRgCKD4uO77nfi9Lw&feat=email 

BIG BLINDS won the tournament for the 2nd year in a row!  They are the team to beat next year!!

Caden read a story that he wrote for a school competition this year.  The theme was "Together We Can".  He was hesitant to enter the contest, but one day when I picked him up from YMCA he showed me his story.  Here it is!  Get the tissues out!

We are so very proud of him!!!  He didn't advance in the competition with this entry, but he will always be a winner to us!!!  His compassion and understanding of Down syndrome and the importance of acceptance is just wonderful to see, especially in a 9 yr old kiddo!

April 2011 ENTRY II

Big news in Presley's education world this month!  We had her ARD last week and the overall IEP process went very smoothly.  She will be transitioning into a regular kindergarten class and will have a resource teacher or an aide with her for 30 minutes of the math instruction, 30 minutes of reading instruction, and 30 minutes of writing instruction in the classroom with her each day.  She will also be pulled out for 30 minutes per day to work on reading skills and they are using the see and learn approach that has been proven to be most effective for people with Down syndrome.  This is so exciting for us!!!  She's been going to the kindergarten class each day while she's at ELE and so she'll be familiar with the classroom and with her new Gen Ed teacher.  She can ready 16 sight words and is doing great in counting objects and much more!  She's working on writing her name each day, but that's proven to be the area that she needs the most work over the summer.  She'll be 6 about a month after school starts in the fall and we can't wait for her to experience kindergarten!  Jeffrey's sister, Kim, and her daughter Emily, bought a house on our same street, so it will be so exciting that they'll be in the same grade at the same school!  Abbey will be 4 in the fall, so no kindergarten for her yet.  She won't be old enough in the 2012-2013 year either, but since she'll be 5 a month after school starts, we're hoping she'll be able to take a test to possibly start early - we've got plenty of time for that. 
August 2011

I can't believe that Presley will be starting KINDERGARTEN in one week!  I'm so thrilled for her, but so nervous at the same time!  She's really excited to start riding the bus again - she LOVES that!  There have been quite a few changes since I last updated the site, so let me fill you in!  Presley wears glasses now, don't think I've shared that yet!  It's amazing how well she keeps them on and when she's not wearing them because she just woke up or something, she'll say, "I need my glasses, I can't see!".  Her vision is pretty bad and within a few months of getting them we had her eyes checked again and her left eye had alraedy gotten quite a bit worse.  She was able to sit in the big chair, but the goggle things up to her eyes and read the letters on the chart.  With her old prescription, the letters had to be really big, with the new one, the letters are tiny and she could read them!  Woo Hoo!  Presley switched from the Montessori school she went to with Abbey to another one for the summer.  She moved to Emerson Academy and really did great.  They have animals there and even have a golden retriever named Duke that just roams around!  The schools has about 10 other kids with Down syndrome there too - none in her class, but some in the older and younger rooms!  I believe that God placed us there and allowed Upside of Down to help a few other families too!  We were able to provide 2 very needed scholarships to two of the students with Down syndrome!  I'll keep you posted on how her first day of kindergarten goes!

January 2012

Happy 2012!  Things are good on the homefront for our family!  Presley is doing absolutely amazing in kindergarten!  Her first semester was a great example of inclusion in public schools.  Presley is in a general education classroom for the majority of the day - she is pulled out for 30 minutes of one on one reading and her speech and OT.  She blends right in with the other kiddos just fine!  In a meeting with her principal, the principal got so excited because she heard Presley say, "that's not fair, he cutted!"....She was thrilled that she was behaving just like the other 'typical' kiddos!  She is reading and loves to do her homework!  I know it's going to become more challenging, but right now, I'm trying to just focus on the successes that we have at this time!

 

April 2012

I hope you've noticed our new blog on the site (first link on the left menu) and LIKE our Facebook page, UPSIDE OF DOWN - this is updated regularly to keep you up to date w/ the lastest that Upside Of Down has going on, this page will be dedicated specifically to Presley's progress!  She is still doing just awesome in kindergarten!  We had her ARD a few weeks ago for the next year, which include inclusion in 1st grade!  We are so thrilled with the inclusion support that she gets at her school!  She's reading just wonderfully and at grade level, I might add!  She's struggling with the comprehension piece, unfortunately, as most people with Down syndrome do, but her reading teacher is working on innovative ways to help gauge her comprehension without her having to tell the storey back to you - more picture based!  During her ARD, her teacher shared with us how much her peers have learned from her!!!  She's taught them compassion - if someone falls out on the playground, even if it's far away, she is the first to run over there and help them up and ask if they are ok :)  She also works closely with a few buddies in her class who are becoming more confident in themselves because they see how they help her with small tasks too!  Her vocabulary continues to amaze us, her new word is 'disgusting'!  She no longer likes cheese, so if we give her mac n cheese or cheese pizza, she says, "No thank you, that's disgusting"...so stinkin' cute!  We continue to feel so blessed by being chosen to be her parents!!!  We are so in love with this little lady!!!!

We just have to share this awesome piece of artwork with you too!  It was selected to go to the district's art competition!!!  So much for not being that great w/ abstract concepts :)

November 2012

Yep, it's almost Thanksgiving!!!  I apologize I don't update this section of the website as frequently as I used to!  I typically update the Facebook page (like the page: Upside Of Down) more frequently!  We also have the blog section of this site too, which provides more general updates for the organization! 

1st Grade is going great for Presley and she still LOVES school. She is so disappointed when it's Saturday and the bus doesn't come :) I hope that lasts a long time!  Her handwriting is struggling more than we'd like so we've added 30 minutes of resource time to her schedule to get more indiviualized writing support, just in a week her teacher said she could see a difference not only in Presley's handwriting, but also in her confidence!!  That's almost more important that the writing skills to me!

This was the first year that Presley went Trick or Treating too!  She usually gets sick w/ vomiting or #2s because she's so anxious about it, but this year she dressed up as a football player and made it to about 5 houses!!!!  I'm so excited about that!  Best part of Presley going Trick or Treating is that she doesn't like candy - more for mom :)

This week she was the 'Marvelous Mustang of the Week' in her class.  We customized a poster that was all about Presley and she got in front of her class and presented it!  Mrs. Paulsen said she did amazing!!  She's also really engaged when other kids present.  She asks them questions about their presentation and everything!

We'll be staying home for the holidays this year - here's a picture we had taken for our Christmas cards!

"ALL THIS IS FOR YOUR BENEFIT, SO THAT THE GRACE THAT IS REACHING MORE AND MORE PEOPLE MAY CAUSE THANKSGIVING TO OVERFLOW TO THE GLORY OF GOD."
2 CORINTHIANS 4:15

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UPSIDE OF DOWN is a 501(c)(3) non-profit organization.  Our Federal Tax ID is: 20-585-2029

www.UPSIDE OF DOWN.org
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