Riley celebrated her 3rd birthday in April – with a pool party, of course! She is an avid swimmer now, and loves to plunge underwater – maybe she’ll be a marine biologist? She loves animals (especially her dogs), ice cream, and playing baseball (must run in the family.)
Riley attended Casino Night, for her third year in a row, and was the “star” of the evening, on stage with her beautiful Mommy, Jenny.
Riley is also an amazing artist! She loves to finger paint and enjoys creating one-of-a-kind pieces for her family and friends. She is also more tech savy than most adults (well, maybe some adults.) She loves playing games, watching movies and exploring new apps on her mom’s iPad and smartphone.
Riley, Riley, Riley. So much sass packed into such a small package! She has personality for days…and an attitude to match. She’s adjusting to her new preschool well and has been speaking a ton. She is saying full sentences now and her speech is getting clearer every day. She recently had her yearly checkup at CHOP and they were extremely pleased with her progress!
She is still into anything Toy Story…especially Jessie the cowgirl. Her new favorite movies are “The Lion King”, “Rio”, and “Monsters, Inc.” She especially likes the music in Rio and Lion King and uses the couch as her “stage” to jump and dance around on. She’s very into books, coloring, and tattoing herself with markers. Riley is taking swimming lessons and has graduated into being in the pool with an instructor rather than a parent. Every chance she gets she is bringing her parents her bathing suit and asking to go in the pool. She’s a natural fish…which makes her family all the more thankful that she was able to get her trach out.
She actually loves her big brother and little sister…and she plays really well with them, but when she’s had enough of Finley she will tell Ryan and Jenny, “She needs a ba-ba. She go night night now”…even if its 10am and Finley is far from tired. She would settle for a trampoline, anything pertaining to the Lion King or Jessie, or an ATV as big a her brother’s – 6 volts just isn’t cutting it for her anymore.
Riley started pre-school in April and loves it! It has really helped her with her speech. She loves everything Toy Story and especially loves riding her Buzz Lightyear quad. She loves playing on the swings at the park. She’s accepted the fact that her baby sister Finley isn’t going anywhere and is starting to have more fun with her! She identifies baseball with the Cubs and says “baseball” and “dada” whenever she sees the Cubs logo. When her dad is on the road with the Cubs she thinks he’s in the TV and always asks Jenny to turn it on so she can see him.
Riley is loving her new sister, and yet adjusting to sharing the spotlight. Riley likes to give Finley kisses and swing her in her swing. Riley is taking swimming lessons and is fearless in the water! (There’s no place she’d rather be.) She loves riding her ATV, and loves anything Tinkerbell! Her new favorite movie is Toy Story 3. She’s obsessed with stickers…and decorating herself, AND her sister with them. She loves music, especially “3 Little Birds” by Connie Talbot. She’s signing a ton…more than Mommy and Daddy can keep up with
Life is good when you are on the move! Riley is taking 8-10 steps without any help now — she’ll be running across the floor soon. She loves playing “house,” especially cooking food for everyone, and enjoys having books read to her, especially by big brother, Brady. Grilled cheese and pancakes and Gerber puffs are all favorites now… and, she’s looking forward to family time and travel post season!
Riley is enjoying exploring new foods and new worlds as a young toddler… she LOVES eating all types of food now (everything from chicken to fruit, cookies and more) and enjoys taunting her older brother –- good ‘ol brother/sisterly love! In fact, Riley’s doctor visits have been going very well, and she is taking in close to 2/3 of her daily nutritional needs orally, which has been an amazing blessing. In addition to watching her favorite shows on television, and playing with her toys, Riley loves down time with Mommy and Daddy and exploring new areas, whether it’s in the backyard, at Wrigley, or downtown Chicago.
After celebrating her birthday out in Arizona (while at Spring Training) and actually eating some of her birthday cake in April, Riley has been an EXTREMELY busy girl! She is still cruising and crawling everywhere. She especially loves to climb stairs and anything else she can find. She is giving her big brother, Brady, a playmate to follow around.
Her favorite movie is Finding Nemo. She still loves Baby Signing Time and is doing a few signs on her own…especially “dog.” Riley loves to make sounds. She says “Mama” all the time by closing off her trach. On occasion she says Dada, Nana, or will repeat a word that someone says. She LOVES books, her big brother’s legos, and splashing in the dogs’ water bowl.
Riley loves to “sample” whatever the family is eating. No baby food for Riley! She helped herself to a few Pad Thai noodles recently. The Dempsters are slowly starting to give her daily feedings by mouth, as much as she can tolerate. But, most of her calories still come through her g-tube at night. Riley will go back to the ENT for a check up on her esophagus in June.
Riley is on the move! She starting crawling two weeks before her first birthday… and is even pulling up to stand and “cruising” the furniture… (the Dempsters are looking into a backpack for her feeding pump… well not really, not yet… but they are getting a workout running behind to keep up with her.) More news to come!
It’s been a very busy six months for Riley, since the last web update.
The most exciting news… Riley has been working with a passy-muir valve (a one-way valve that attaches to the outside opening of the tracheostomy tub and allows air to pass into the trach, but not out through it**)– now, she is cooing and trying to talk, which has been music to the Dempster family’s ears! She loves to say “Mama,” babble and makes all kinds of noises. Riley loves to talk… even so much so, that she has figured out how to block the trach with her chin (when the passy-muir is not in), so she can speak.
She LOVES to taste foods—her favorite to eat: Cheez-its, and Salt and Vinegar Chips
She is on all four points now—and can crawl backwards, rocks, and can even do the army crawl (but hates when the feeding tube and trach get in the way and slow her down.) She is pulling herself with the help of nearby toys and her crib.
Riley’s favorite show is “Baby Signing Time” with Rachel Coleman—she will stop everything to watch it!
She is very tactile—she loves to find the tag on anything…
Since it is common for additional mucous buildup/constant draining with a trach, Riley had tubes put in her ears, to help with drainage.
Riley has had a full therapy schedule, keeping Mommy on the run most days. The full schedule includes:
Speech therapy – 30-45 min. a day; three times a week (working with the passy-muir, and stimulating muscles)
Physical therapy – two times a week (working on crawling to sitting; and sitting to standing)
Developmental therapy – one time a month (play with toys to evaluate her “developmental” age)
Occupational therapy – one time a month (to work on fine motor skills and access her progress.)
Riley will celebrate her 1st birthday next month. We look forward to sharing more updates soon!
**More on the passy-muir valve: The valve opens when the patient breathes in. When the patient breathes out, the valve closes and air flows around the tracheostomy tube, up through the vocal cords allowing sounds to be made. The patient breathes out through the mouth and nose instead of the tracheostomy. Some patients may immediately adjust to breathing with the valve in place. Others may need to gradually increase the time the valve is worn. Breathing out with the valve (around the tracheostomy tube) is harder work than breathing out through the tracheostomy tube. Patients may need to build up the strength and ability to use the valve, but most children will be able to use the speaking valve all day after a period of adjustment.
Riley Elizabeth Dempster (“Riley”) is the third member of the Dempster Roster…
She was born on April 1, 2009 — to proud parents Jenny and Ryan — in Arizona (while Ryan was just starting the 2009 baseball season.) Mommy Jenny was hospitalized with Riley early and had to remain in Arizona for her arrival. Riley was born with DiGeorge Syndrome, which is a disorder caused by deletions within the 22q11 chromosome. Although there are many different variations of this disorder, the doctors treating Riley focused most in Riley’s ability to feed and swallow. At only a month old, Riley took her first plane ride, to her hometown Chicago, to reunite the family all back in one place. She settled in to Children’s Memorial Hospital for more testing; physical, occupational and speech therapy; and a surgery to put in a trach and a g-tube for feeding, as well as a procedure called a Nissen Fundoplication (to reduce reflux into her esophagus.) But, Riley was one tough little girl. After 12 long weeks of fighting and working hard, Riley was able to go home with the family. Riley had a great summer, even attending a few Cubs games. She is doing great– celebrating her 6th month birthday in October–and the family is looking forward to evaluations in the off-season and traveling together.
Please check back in for updates here at the Dempster Foundation website to keep up with Riley’s progress… and thank you for all of the thoughts, prayers and well wishes!
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