Emily at age 2 is a sweet natured little girl who loves to look at books, watch DVDs & now that she can walk ~ also loves to go outside. She is now picking out the DVD’s she wants to watch and handing it to me to start for her. (She will watch the same movie several times a day). Right now, The Heffalump Movie is at the top of her pile. She does occasionally change favorites, watching the same DVD for a week or more. Emily knows each & every DVD she has. She will only eat certain foods ~ french fries, plain rotini noodles, vanilla wafers & graham crackers. (drinks include milk & apple juice only) Emily also likes to stuff alot of food in her mouth at once. She definately can understand alot more than she can convey to us. I think that one day she is going to just burst out and tell us all sorts of things that she couldn’t before. (he he) Emily has mild sensory issues…… she is very cautious about new things she touches, sometimes sits in the bath tub with her feet in the air, getting her into the sandbox took all summer & she doesn’t really like people or the sun touching her. She will usually look to another person for approval & clap for herself after a job well done.
Emily has sleep issues…… some nights it takes a very long time for her to fall asleep & then she will wake up several times during the night (sometimes even staying awake for hours). {update 5/2009} Emily is currently taking 3mg of Melatonin in the evening to aide in a proper sleep routine.
We love to watch her progress & always get excited when she discovers new things she can do. She’s our little POOH & we are blessed to have this special little girl in our lives!
Speech Therapy Begins
Emily started her speech therapy this past March 2009 & was responding to it quite well. So far she said these words: ball, bath, duck, bear, dog, mama, dada & NO. (a couple of times we’ve heard her say JOE while watching Blues Clues) They are not all super clear & not always consistent but we know what she is trying to say. Sometimes she will say her words as clear as day, and then never say them again. It’s almost like she never learned them. That also goes for some of the actions she learns, like waving goodbye. She does it for awhile & then never again.
We were so proud to watch her pointing to things in a book and trying to sound the word out. She was also starting to use some signs on her own like bed, choo choo train, doll, baby, hat, monkey, eat & more.
One Step at a Time
We take each day one at a time, each thing that Emily learns One Step At a Time.
Sometimes it feels like 2 steps forward, one step back . Life with a chromosome deletion. There are new things we learn every day and there are things that are still a mystery to us.
One Step Forward for a little girl - who, at one time liked going outside & now doesn’t.
One Step Forward for a little girl who once loved the bath & now has a look of desperation in her eye when her body touches the water because of her now oversensitivity to things she touches.
One Step Forward for a little girl who once ate anything she was given & now has a menu of about 5 items because of a sensory integration disorder.
One Step Forward in her learning, in her milestones and in her communication with us.
This is our journey…….our road of uncertainties & unknowns………..but it’s God’s plan for us and we will travel it together.
Emily at age 3 is now showing a much higher sensitivity to things she eats, she touches or that touch her. Sensory processing disorder is the technical term. She goes through periods of not wanting to get into the bath water or wanting her hands washed. She has a look of desperation on her face when her body touches the water.
*note* Emily’s sensitivity to the bath changes from time to time.
Her menu is still pretty small, but still includes rotini noodles, french fries, Cheez It’s, Vanilla Wafers & Teddy Grahams. She will now only drink milk & occasionally water. She has been know to request the Cheez It’s for every meal with her PECS cards. I guess I am not getting the mother of the year award with that one.
Her tolerance for the outdoors has gotten lower. She would much rather stay inside and watch her DVD’s. That doesn’t stop us from trying to get her outside more often. We have noticed that she is more likely to come outside when the sun isn’t shining & it’s a little cooler.
Emily loves to sit with a basket of Little People and plays with them for hours. She can identify them all by name. {She does not like Play Dough}
Emily is also starting to using signing more & more. She is consistently using the sign for cracker, elephant, train, eat, more, bath & milk.
Emily at age 4 . . . . is now started to become a little more adventurous and try some new things. ie: going outside a little more.
Her food preferences haven’t changed much & she uses her PECS cards to let us know what she wants to eat or drink.
She loves to interact with whatever is happening on her DVD. Mainly copying what they are doing…. but 2 seconds before it happens.
Emily’s size is still smaller than average. At age four she weighs about 35 pounds and measures 36.6 inches tall.
Emily no longer takes Melatonin to help with her sleeping issues.
Emily at age 5 ….. is very happy when she is looking at her DVD’s & books. She inspects everything she touches and puts everything into neat piles.
Emily’s menu consists of Cheez It’s, vanilla wafers, milk and french fries. We’ve tried introducing some new foods….but she isn’t falling for it.
Emily attends Kindergarten PDD and has a one on one aide throughout the day. Basically, on paper, Emily’s a cute bundle of incapability.
She also became a big sister this year!
Emily at age 6 ….. still loves watching her movies. This past year, she has learned to navigate through an Ipad like nobody’s business and is also learning how to communicate using a Go-Talk 20.
She likes being in familiar surroundings and seems to be distressed when taken out of them.
This year Emily was granted her very own wish from Make a Wish….so our entire family took a trip to DisneyWorld where Emily was able to meet Winnie the Pooh. April 2013
Our family also took a trip to Indiana in July 2013 for the C17 Gathering.
Emily at age 7 is still master of her iPad. Has been known to watch 2 shows at a time. She still MARVELS at the snow. It’s amazing how she sees the beauty in things that some of us might take for granted.
Emily is non-verbal, developmentally delayed, is not yet potty trained, doesn’t know how to write her name {actually she doesn’t even really care for touching a pencil or crayon}, struggles with speech apraxia, hypotonia and seizures. But despite her challenges, still wakes up each day finding a reason to smile.
Basically, on paper, Emily is a cute bundle of incapability. That is…if you are going by “normal” standards. In our world, we don’t have standards and we see the amazing abilities that Emily does have as she discovers the world with wide-eyed wonder.
This has been a year of trying some new foods for Emily. She has surprised us a few times by eating a cheeseburger and walking down the stairs on her own.
Emily still takes Lamictal to control seizures and on occasion we give her Clonodine to help with sleep issues. As a mom, it tugs at my heart giving her something that makes her go to sleep…but I was reminded by her neurologist that since her body can’t always do it on it’s own….she needs help.
Our little animal charmer still has a way with God’s living creatures. So sensitive to other things around her but never a worry when she’s around animals.
This year, Third Grade …. Emily started at a private school for special needs children. She was in a PDD class through the public schools but she needed more of a life skills type structure that they couldn’t offer.
More coming soon….
During the summer school program between Third and Fourth grade Emily became very anxious and did not want to ride the school bus. She also became anxious about going to school. Special needs children need structure & routine and for Emily….the constant changing of bus drivers and bus aides makes her nervous.
Imagine this for a second…. You can’t talk, and you have to rely on the people around you for everything. They help you eat, change your pull up, they are there for an emergency and to guide you down steps. They are even there to hand you a favorite stuffed toy on the bus. Your life really depends on the people around you and the ones assigned to take care of you when you are away from your own parents.
What happens when there is a new person? They don’t know what you need. How do you tell them? You can’t Not if you are non-verbal. So imagine life in Emily’s world and why something as simple as that would make her so anxious and scared.
Emily at age 9 …..
Equine Therapy begins. We took Emily for a horseback ride on her 9th birthday and she was in love. We drive out to the Raise Your Dreams Farm once a week and Emily gets to ride.
I cannot even explain how amazing it is to see her up on that horse. It’s like for that time she is free.
About food: Emily has been on a diet of mostly cheez its for the past 7 years. That’s no secret. But after one of her abdominal migrane episodes and 11 days of no solids ….when Emily was ready to eat again she said NO to cheez its. Who is this girl? Now she eats french fries. french fries. and french fries.
About sleep: Sleep? Who needs sleep? Apparently not Emily. Emily’s sleep patterns have varied over the years from taking forever to fall asleep, to not falling asleep at all, to waking in the middle of the night. Sometimes her sleep was just normal. We are now in a routine of Chlonodine at bedtime along with Melatonin.
This little bugaboo likes to fight falling asleep ….even with the sleep aide so we did install a walk thru baby gate at her doorway in case she wanders around in the middle of the night.
Emily does suffer from some sort of throwing up episodes {we think may be abdominal migranes - but not formally diagnosed}. One day she will be throwing up, the next day super tired and not eating. Third day she starts feeling better and back to school on the fourth. It’s like a routine and happens almost monthly but sometimes every other. This has been going on for a few years and up until now I just thought she was getting a virus.
Almost 10 …..
