Delainey M. Disna

Delainey’s Story

“She is such a delight and we are truly blessed as a family.”

Delainey M. Disna, Trisomy 13, 4/27/2012, Steinbach, Manitoba, Canada

 

DsheaUpdate 7/23/15:  Delainey was born at 34 weeks in Winnipeg Manitoba, Canada on April 27, 2012. We did not know about her diagnosis prior to birth. It was discovered at an ultrasound at 29 weeks that she had enlarged cystic kidneys but that’s all we knew.

She came into the world weighing 4lbs 3oz and 18 inches long. She was born with multiple heart defects, enlarged cystic kidneys, mild club food, cleft lip and cleft palate. Her left eye was fused shut til about 5 weeks old. She has roughly 20% vision in her smaller left eye and has cataracts in her right eye. She wears glasses, some of the time, mostly because she hates them and flings them off her face. At 3 months old we went to our cardiology appointment expecting to prepare for some pretty heavy heart repair surgeries but her heart exam came back totally normal – they couldn’t find anything wrong with her heart. A week later we had an appointment with nephrology (kidney specialist) and we were told we would only have to come back on a yearly basis and everything looked good.

At 8 months old, in December 2012 she went for her first surgery, cleft lip repair. She did well and the surgery was smooth. At 14 months old she went for her cleft palate repair. That surgery was a success, however Delainey took a little longer to recover this time but once she did, she was stronger and back to normal.

She is seen by a child development worker weekly and a physiotherapist and occupational therapist monthly in our home. I do most of her therapy on my own. She is doing significantly well. She is a strong willed child and is determined to succeed. She eats pureed foods, doesn’t nor has ever had a g-tube for feeding. She is not on any special diet and isn’t on any medications. She is eating orally all solids foods but I often puree her meals because she tends to eat more that way and I am able to get her to eat a lot of foods she would never want to eat by mouth (mostly vegetables). I like to give her as much experience with chewing as possible.

She is now 3 years old and is able to get into the crawling position, on all fours, unassisted and can rock back and forth, she can keep her head up, she is can sit by herself, she can stand against furniture and hold herself up. She has begun to army crawl and can pull herself up in her crib and up onto the entertainment unit.

She loves to play, swing in the swing set, loves puppies, loves watching cartoons and dances to music. She enjoys countless hours in the pool, and loves water. She has 2 younger siblings and she is an amazing, affectionate older sister. She is gentle, funny, kind and always happy. Her younger sisters are amazing little cheerleaders for Delainey and they give her the motivation she needs to keep trying and never giving up. Delainey is loved by her community, family and friends all over the world.
She is such a delight and we are truly blessed as a family. We, like many Trisomy families weren’t given much hope or much to look forward to, so every day we have with her is AWESOME.
Delainey has been given a wonderful life and we try to expose her to anything and everything we can and her Trisomy13 diagnosis doesn’t hold her or us back from trying something new. She’s been on a plane for a family vacation, she has gone to carnivals and enjoyed the carousel and ferris wheel, cotton candy and mini donuts. Life is meant to be lived.

She now has a walker, standing frame, floor seat, bath seat, an Upsee & a GoTo seat and most recently a crawler which her Grandfather made for her. Most of her equipment we have received from the children’s rehabilitation clinic but some we have raised the funds for ourselves and purchased them for her. Like I mentioned earlier she can army crawl, roll, stand while leaning against furniture or a wall, takes steps with assistance. She’s eating everything but dairy.
She is currently on no medications and is very healthy. Having a child with Trisomy has pulled our family together. You cherish moments more, the bond between Delainey & everyone who meets her is amazing.

We started an awareness page on Facebook for her so families can see her progress by looking at the photos and videos we put up. Here is her link for anyone interestedwww.facebook.com/DelaineyLivingWithTrisomy13
you can also email me any questions you may have @ s_ladawn_83@live.ca

 

DelaineyStoryOriginal story: Delainey was born at 34 weeks in Winnipeg Manitoba, Canada on April 27, 2012. We did not know about her diagnosis prior to birth. It was discovered at an ultrasound at 29 weeks that she had enlarged cystic kidneys but that’s all we knew.
She came into the world weighing 4lbs 3oz and 18 inches long. She was born with multiple heart defects, enlarged cystic kidneys, mild club food, cleft lip and cleft palate. Her left eye was fused shut til about 5 weeks old. She has roughly 20% vision in her smaller left eye and has cataracts in her right eye. She wears glasses, some of the time, mostly because she hates them and flings them off her face. At 3 months old we went to our cardiology appointment expecting to prepare for some pretty heavy heart repair surgeries but her heart exam came back totally normal – they couldn’t find anything wrong with her heart. A week later we had an appointment with nephrology (kidney specialist) and we were told we would only have to come back on a yearly basis and everything looked good.

At 8 months old, in December 2012 she went for her first surgery, cleft lip repair. She did well and the surgery was smooth. At 14 months old she went for her cleft palate repair. That surgery was a success, however Delainey took a little longer to recover this time but once she did, she was stronger and back to normal.

She is seen by a child development worker weekly and a physiotherapist and occupational therapist monthly in our home. I do most of her therapy on my own. She is doing significantly well. She is a strong willed child and is determined to succeed. She eats pureed foods, doesn’t nor has ever had a g-tube for feeding. She is not on any special diet and isn’t on any medications. She is however still on Soy formula because she can’t stomach regular milk, formula or even juice properly. She gets very backed up from milk and juice causes a lot of mucous so we just don’t bother.

At 21 months old she is able to get into the crawling position, on all fours, unassisted and can rock back and forth, she can keep her head up, she is learning to sit by herself, she can stand against furniture and hold herself up.

She loves to play, swing in the swing set, loves puppies, loves watching cartoons and dances to music.
She is such a delight and we are truly blessed as a family. We, like many Trisomy families weren’t given much hope or much to look forward to, so every day we have with her is AWESOME.

Delainey will be 3 years old April 27, 2015. She now has a walker, standing frame, floor seat, bath seat, an Upsee & a GoTo seat. Most of her equipment we have received from the children’s rehabilitation clinic but some we have raised the funds for ourselves and purchased them for her. She can army crawl, roll, stand while leaning against furniture or a wall, takes steps with assistance. She’s eating everything but dairy. We purée the majority of her food but she can handle chewing some foods and I like to give her as much experience with chewing as possible.
She is currently on no medications and is very healthy. Delainey is the oldest sibling and has two younger sisters. Having a child with Trisomy has pulled our family together. You cherish moments more, the bond between Delainey & everyone who meets her is amazing. Delainey adores her little sisters and her sisters have been great at encouraging Delainey.

We started an awareness page on Facebook for her so families can see her progress by looking at the photos and videos we put up. Here is her link for anyone interested
www.facebook.com/DelaineyLivingWithTrisomy13

Shannon Broesky

s_ladawn_83@love.ca