Evie the Extraordinary and Her Mommy: The Journey As We Go

I'm having some trouble posting to so many places, so here is a summary of Days 7-14!  Thanks for all of your encouraging comments on this month of DS facts!  It makes it worth the effort! 💙💛 Day 7 DS Awareness: Embarking on the DS journey can be a roller coaster. It is our “framily” who keep us going when life throws some unexpected side trips, and who cheer with us during the many small victories. Thank you to everyone who has supported Evie for the Buddy Walk this year! We love you and appreciate you!   Starting out the Buddy Walk! Evie was overwhelmed by the loud cheering at the start line.  Day 8: An estimated 90% of moms with a prenatal DS diagnosis will choose to terminate their pregnancies. When I first found out our diagnosis, I had to search hard in general literature to find anything positive about having a child with Down Syndrome. Increased availability of non-invasive blood tests that can identify chromosomal defects could potentially eliminate people wit

DS Awareness Day 6: Before I knew anything about DS, I thought that my child would not be smart. I could not have been more wrong. Evie continues to show me on a regular basis how smart she is. She’s asks to do flash cards at least three times a day. She knows all of her letters and her basic numbers. She can tell me which words start with a certain letter, and she’s only 3.  # nolimits   # evietheextraordinary Our favorite flashcards were passed on to us from another family on the DS journey.  They are awesome because of their large size and the sign language pictures on the back of each card! I don't see them on Amazon, but they are at babysignlanguage.com. This is the reference book from the same brand:  Our other favorites are: Evie also loves treating this Eric Carle matching game as flash cards (they make a great gift!). She is working on learning to make pairs to match the animal pictures. Happy flash carding, and Happy long weekend!

DS Awareness Day 4: When Evie was first born, I couldn’t even think about reading books to her amidst all the medical issues we were dealing with. But her daddy lovingly read books to her from her first week of life, and it has paid off. Evie loves books and has developed very strong opinions about which ones she wants to read. Yet another example of  # dontlimitme  and how Evie can do anything she sets about to do.  # evietheextraordinary DS Awareness Day #5: There are 3 types of Down Syndrome. There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%. No matter what type, the preferred way to refer to a child is not as “the Down’s kid,” but by their name and mentioning that they happen to have Down Syndrome. Evie is that feisty little girl with the button nose and dimples, who has a passion for music and swinging.  # evietheextraordinary

DS Awareness #3: Evie’s getting so good in her walker, that she surprised everyone in gym class by taking off to go tag her classmate during a game! Here’s a  # tbt  to the spring when Ms. Sassy Pants took off when I told her it was time to go home. She’s overcoming her hypotonia (low muscle tone) every day! With low muscle tone, walking or standing for long periods of time is hard work!  # evietheextraordinary

DS Awareness Day 2: Why doesn’t Evie talk yet? Kids with DS have lower muscle tone, and how that affects speaking, walking, and eating varies widely. Evie has super low muscle tone, and this includes her oral muscles. She is learning now to move her tongue and says B’s, D’s and G’s pretty well. She loves practicing funny sounds with mama. When a good song comes on the iPad, she now makes noises like she’s singing along. Songs about daddies especially get her going on a Dada monologue.

It's Down Syndrome (DS) Awareness Month!  On my 3rd year doing this, my goal is for the facts that I post to sound familiar to friends and family. I want you to think "I already knew that," because you learned from me before!  I want you to be able to share what you learned with other people you know, so that DS becomes a more acceptable part of our culture.  What is Down Syndrome?  Individuals with DS have an extra copy of the 21st chromosome.  They are more similar to everyone else than they are different.  Before the 1980's, the majority of people with DS were institutionalized.  It was standard procedure for a doctor to advise parents that their child was less than human, would have numerous medical issues, and would be better off in an institution.  Evie is our gift and I am so glad that we are not missing out on the joy that we have with her in our lives.  I hope you enjoy this video about a woman with Down Syndrome who was institutionaliz

Guys. I had a huge breakthrough today. I actually did something the feeding therapist told us to do at home.  She had suggested putting food on Evie's tray to help her feel comfortable with finger foods around her, but to actually remember to do that and implement it is another story (along with all the other therapists' suggestions for various parts of her body). This Labor Day weekend, I found myself with time to focus on her eating with the intent of being creative.  We started lunch time with a canister of star puffs. I told her I was putting 10 stars on her tray, and because she loves counting, she actually watched me do it. Then we proceeded to eat her pureed mac and cheese while singing the Hokey Pokey.  (If you want to know alternative body parts to sing to entertain yourself during the 20th verse, I'm happy to share.)   It doesn't sound like much, but Evie didn't cry or throw her star puffs, and was willing to touch them and put them back in the canister.

When I was growing up, I thought summer school was only for children who didn't do well academically.  Now that I have a child with special needs, I'm learning that summer school can mean very different things. Evie just finished her second day of summer school.  To her, we go in a different entrance and there are new teachers and new classmates.  But as soon as she saw her new classroom, she went right for the blocks, and I knew she would be just fine.   If a child has an IEP, it's not an automatic thing that they will qualify to have Extended School Year (ESY) services.  It has to be apparent that the child will regress without school, or take a long time to relearn certain skills due to lack of school during the summer.  Some kids qualify for therapy sessions during the summer, and others, like Evie qualify to go to the summer school program for 1 month.  There was no question that Evie qualified for ESY when the IEP was first written--I didn't have to fight

I once bought a book called "Smart Girls Finish Rich" by Suze Orman.  I don't remember at all what it said. And I'm not rich yet, so I'm not sure the book worked.  Once we had Evie, we knew off the bat that we would need to plan ahead financially for her, and more than the typical situation.  We hope she will be able to live on her own as an adult, and hopefully have a job (as a rock star or a model--let a mom dream).  But we need to make sure our little girl will be provided for. I asked on our awesome Facebook group for local families with kids with Down Syndrome, and got some great recommendations about places to call. We picked an advisor that was two towns over, but mostly because this financial group is specifically equipped to help families with special needs. One co-founder has a son with Down Syndrome, and the other has a brother with special needs.  Back when they needed help, there wasn't much out there to advise them on how to prepare for the

Hi everyone! My mommy is too busy to blog, so I have decided to blog for myself today. I had my last day of preschool last week, and I am enjoying vacation.  I wanted to tell you about my thoughts on preschool since starting in January. It's awesome. When I arrive, I meet with Miss Amanda, and she helps me walk in to the classroom. As soon as I walk in, people say hi to me.  My friends C and F are especially good at saying hi to me, and make me feel really special.  In fact, they have been greeting me at the car, ready to hold my backpack and hold the door open for me.   After I go inside, I put my name on the attendance board and then join in free play.   On Mondays, I do therapy with my speech, PT, and OT therapy ladies, and they usually come into the classroom and hang out with me.  Sometimes we go and walk down the hallway with my walker. I'm getting really good at that. When I walk down the hallway, the older kids know my name and say hi to me.  I guess they r

Evie just got her second pair of SMO's!  (If you missed our post about her first pair, and don't know what SMO's are, click here .)  I feel a little mom guilt because I didn't keep up with her appointments at the orthotics clinic.  I felt like I could tell when she outgrew the SMO's.  I was wrong.  By the time we went back, she had outgrown her SMO's by about 2 cm, which is a lot if your feet are the size of a large avocado.  If you're interested, this time she got a princess print. Rocking the walker around the neighborhood  Evie's own solution for taking a break from walking Now that summer is here, Evie's foot needs are a little different. SMO's are really hot and make your feet sweaty.  I've found that we need mesh socks and ventilated shoes.  Here are Evie's tried and true recs for the summer SMO fashion statement: Can't forget the Hello Kitty shoes.  Thankfully, she hasn't decided to make it a project

I was pretty excited to go to the Down Syndrome Clinic's Fashion Show today.  We had a local radio host, 3 photographers who donated their time, a buffet lunch, and a rockin' fashion show lined up.  Kids and adults of all ages were there--grandparents, aunts and uncles, parents, friends, and the rock stars themselves, the kids with that extra copy of the 21st chromosome.   There was a toddler with a royal blue ball gown and a tiny silver tiara in her hair.  There was a chubby-cheeked infant boy sporting a preppy navy dress shirt and shorts and a summery tan fedora.  A 12 year old boy made us ooh and aah with his skills with a hula hoop and a spin ball.  He wasn't that good--but his happy spirit and attempts to make the audience laugh made him spectacular. A group of elementary-aged girls in a dance troupe performed for us, and their team member with Down Syndrome, while she didn't keep up exactly, showed that she was fully included and appreciated.  The teens who mo

Evie's 2-year follow up with Cardiology was today.  She had open heart surgery at 5 months old to repair an ASD and VSD, and since then, her heart has been strong, and her pulmonary hypertension has resolved.  I celebrate her heartiversary every year to remind us of how far she has come. Taking a 3-year old for an afternoon of an EKG, Echo, and Cardiology follow up takes a lot of energy.  Especially when said 3-year-old does not want anyone to touch her.  "Evie, these are stickers!"  Evie did not think that EKG leads and stickers were fun at all.  She would not stop wailing until we took them off. The Echocardiogram part was a bust.  The technician gave up when Evie start flailing around, even though I had her arms in a lock and my legs around her legs, while my husband tried to hold the iPad and hold her legs as well.  Evie's look of blame when she twisted around to ask me for help was an arrow through my mama heart. We finally got to see our fave cardiologi

If you don't know what a "threenager" is, the term refers to a 3 year old who already shows signs of being a teenager.   "Evie, you just took Mommy's seat.  Can Mommy sit down and get out of the airplane aisle?"  [Evie grunts and shakes head no.] As Evie gets older, we run into new challenges that stretch us in our ability to find creative ways to help Evie adjust to new experiences.  The latest new experience was a 6 hour plane trip from Boston to California and back, with the fun stuff in between. Here are some new insights we learned about traveling with a non-verbal, g-tube feeding, non-walking 3 year old who is curious, feisty, affectionate like a clingy koala bear, and only bribable by iPad time and hugs. 1.  Food transportation.  Evie eats blended food orally, so each week I prepare a variety of frozen foods, blend them up, and freeze them in cubes.  Transporting these for a 6 hour plane ride and then 4 hours in the car (darn LA traffic!!) call

Dear Evie, As much as I'd love this superpower, Mommy is not a mind reader.  When you are sitting in front of me asking for music, I do not know what song you are thinking of in your head.  I ask you if you want "The Cat Came Back,"  "Rocketship Run," or "Stand Up Sit Down," but you just growl at me and get frustrated that I can't read your mind.  So I am doing something about it.  Love, Mommy I am making my own personalized Evie PECS board.  PECS stands for Picture Exchange Communication System.  It is very useful for helping nonverbal people to communicate. Evie has matching communication books made of PECS pictures at school and at home.  But when it comes time for what song she wants to be played, the field is open. Evie's school provided a Communication Book for home to match her book at school. It even has pictures of each of her classmates and teachers and therapists! Evie's song menu choices in her school commu