March 4, 2014 - Way overdue updates

Sorry it has been soo long since my last post...we have been really busy with our newest  addition to our family Rylee Jo (she is 1 year old now).

 

I am a kindergarten teacher in the public schools and I have worked the last 2 summers as a summer camp teacher at the Down Syndrome of Louisville and have learned ALOT about what I want for Ellie and what we definitely DO NOT want for Ellie.  I have spoken with lots of parents in lots of different stages in their acceptance, denial, and journey with a child with down syndrome.  I will say these are the top things that will improve a child with down syndrome's quality of life!

1. Early Intervention (begin as early as possible) - we started at 6 weeks old with PT and DI.
2. Brain supplements - we started using Brainstrong a plant based DHA supplement - and we now use COROMEGA 3+D a fish oil DHA and Omega 3 supplement.  Children with DS tend to stop producing the oils in the brain that help connections be made when they are really young.  Replacing these oils improves thinking and brain function.  If you recall - "back in the day" parents used to give their children a spoonful of cod liver oil everyday...and look at how quickly our society advanced...we got away from this and just take a ride on our highways at some of the drivers...enough said...lol
3. Strong Parent Avocation - many people (professionals included) do not truly understand DS and they use the title DS to make decisions for our kiddos.  DO NOT let this happen.  KNOW your rights as a parent - know your child's rights as a student.  DS does not define our kiddos, it is just a characteristic like eye color and hair color.  Do not be afraid to tell educators, doctors, and anyone else "NO!"
4. Set High Standards - Your child will work to meet every standard you set for them.  If you believe your child can do it...then they most likely will, if you believe they can not...then most likely won't.  Set little goals to reach larger goals.  Celebrate small achievements and do not compare your child with the success or failures of other children.
5. DO NOT MAKE EXCUSES - Many of the children I have worked with who struggle (with DS and without DS) main reason for struggling is because parents made excuses for them.  Ohh well I know they are running around like they have no sense, but they have DS so its ok.  Ohh I know they are pinching and hitting, but they are just wanting attention so its ok.  My most favorite "Well they won't eat anything but chicken nuggets."  The more excuses you make for a child the more reasons to make excuses will arise.  Just decide...I do not care if you have DS it is dinner time you have to sit at the table with the rest of us.  I do not care if you have DS it is not ok to hit someone for ANY reason.  I do not care if you have DS, this is what we are eating for dinner, this is not a restaurant - eat.  When your child is hungry trust me they will eat!  Do not treat your child any different than you would if they didn't have DS.  You and your child will benefit from this!!

Ok...lol sorry I got side tracked...back to Ellie...

I could spend all day writing about the events that have occured in our lives since the past almost 2 years, so, I am just going to focus on where we are...

Our little Ellie Mae is a typical rambuncious, stubborn, tornatic, adorable, and sweet 3 year old girl with an abnormal gene.  She has recently been "kicked out" of the first steps program so she could enter the public preschool systems, but she is not ready for that kind of setting.  So we are working with her at home and she will begin preschool in the fall.  As of now, compared to her typical peers she is right on target in most areas except speech.  She has a great understanding of what is being told to her and can follow directions (when she wants to), but she just doesn't "want" to talk.  She has found ways to express her needs by using her made up sign language, bringing you to what she wants, or grunting and pointing and then attempting to say what you want her to say to get what she wants.

We had a scare last month when she went for her CT scan of her neck (a regularly checked item in children with DS).  Her scan came back inconclusive.  She had to have a sedated MRI done and the possibility of another surgery lingered.  Although I know I could have handled another MAJOR surgery, I did not WANT to handle it.  Through prayer and pushing forward her sedated MRI came back normal and NO SURGERY!!  Medically she has no medical information to report.  She only has to see the cardiologist 1 time a year and the pediatrician 1 time a year just as a check up.  Praise the Lord!!!

She continues to amaze me and delight me in almost everything she does.  She LOVES her new sister Rylee and between the two of them they keep me on my toes.  Raising a child with Down Syndrome has proven to be no different than raising a child without Down Syndrome.  Once I made that realization, my life with her was a lot more enjoyable!

I can not wait to see the independent woman she will become.  She is soo driven and curious and amazes us daily!  Thank you Lord for blessing us with an extra chromosome!!

July 5, 2012 - Fourth of July

July 3, 2012 Ellie had her heart catheterization.  She did wonderfully!!  Her heart looks great....there is a slight leak in one of the valves they repaired during surgery last year and if it never gets worse (which they don't think it will) she will never have to have anymore procedures for her heart....if it gets worse.....she may need to have another surgery years from now...they don't think this will happen.  God has something wonderful planned for this little girl. She keep marveling us all!!   Here are two pictures of her heart.  One is before and one is after...

This is Ellie's heart before they did anything on Tuesday...you can see the cross over blood - the dark smokey looking areas....

This is Ellie's heart after they coiled the PDA valve. You can see the little coil in the image. You can also see the change in the amount of cross over blood there is.

This is Ellie recovering in the hospital - she did not have to spend the night.  She went in at 6:15am and we were home by 6:00pm that night.

 

July 4, 2012 - This is Ellie's offical first 4th of July fireworks.  She was in the hospital last 4th of July recovering from heart surgery during the fireworks.  She loved the fireworks...she just watched and watched...we all hated the heat but we made the most of it and for the most part we had a blast...here are some pictures.

cooling off in the misting fan

loving those bottles of water

eating a cookie

I rasised him right!!  LOL

watching the fireworks 

Watching the fireworks 

covering her ears...lol

 HAPPY 4th 2012 Ashton family!!



June 10, 2012

Ellie is doing soo well.  We are adding speech to her interventions just to offset anything unseen yet.  She is currently waving hello and bye to everyone and she is sooo close to walking independently.  She can take at least 5 steps without holding on to anything before she falls.  She is soo darn cute...I am a little bias...lol  She is very curious about her world and how things work.  She likes to make people laugh. 

 All my gifts from God!!

 Playing in the sprinkler.

Fast asleep after a long day at the zoo.

SHE LOVES THE WATER!!!

 Sooo BIG!!

 Trying to walk on her own!!

 She is more confident walking while holding on.

Have you noticed she has a different bathing suit on in each picture playing in the water.  This girl has more bathing suits then I have ever had in my entire life...LOL (All gifts from people who love her)

She is blowing a kiss...lol

Ellie goes on July 3, 2012 back to the hospital for a heart cauterization.  This is normal procedure 1 year following surgery but it still make me a little anxious because they have to put her to sleep and insert a tube into her heart to take pictures and try to coil up her PDA valve that reopened after surgery.  Nothing major the doctors say - the worse case is if they can't coil it because her valve may be too small she may have blood pressure issues when she is older which could be controlled with medication.

I am currently 19 weeks pregnant and working for the summer at the Down Syndrome of Louisville as their kindergarten/1st grade summer program teacher.  I am learning soo much from the other parents and the children in my classroom.  Things that will help me help Ellie reach her potential.  It is unbelievable how Down Syndrome affects each person differently.  It is just like typically developing children...not one is the same.  This is a stereotype that many people think - before Ellie I was one of them.  I heard Down Syndrome and I saw 1 thing in my head...when in reality it is not a single duplicated category.  Amazing.  God is soo wonderful, he has made each and everyone of us different.  We all have special tasks we have to complete while we are on this Earth no matter our characteristics.  I can not WAIT to see where my children's paths are headed and what wonderful things they will do while on this Earth.  I can not tell you how lucky we are to have these experiences we have had the same ones I was terrified for a little over a year ago.  We are coming up on the 1 year anniversary of her surgery...what an experience that was.  On June 18, we go to have an ultrasound of the new baby.  This is the same ultrasound that discovered Ellie's heart condition when I was pregnant with her.  We are a little nervous about the results but I will finally relax once it is over.  All of our prenatal tests have come back normal up to this point but we are still a little anxious about this appointment.  I know everything will be okay...God is with us no matter the what the out come is.  The only thing that will upset me during this appointment will be if the doctors say the new baby will need a surgery...everything else will be a blessing...I do not think I could handle going through another surgery like Ellie's again...

4-19-12 Soo many updates!!

Ellie is getting soo big!  She amazes me everyday with the things she is able to do.  Her lates tricks are raising her hands above her head and you are supposed to respond with "Soooo Big!!"  Another trick she has learned is that if she lays her head on something everyone says AWWWWWWWW...it cracks her up.  She has also learned this absolutely funny face...she looks like she is mad...but she is just making the face at random times...just to get a reaction out of everyone...too funny...

She is walking while holding on to furniture and it is hard to keep her contained in a space...she is very opinionated about where she wants to be and where she doesn't.  She loves her family and she doesn't like to be alone!!  No matter how stressful your day was seeing her face make me melt!!  She is proof that God can do anything!!  I forget sometimes that she has DS...I just see her as Ellie.  Life would not be as wonderful without our sweet Ellie Mae!!  Here are some pictures...

Loving her daddy at the Zoo!!

Ellie Hiking!!

2-18-12 big news!!!

Well, Ellie is going to be a big sister. We just found out that I am pregnant. We are soo excited for our new little one to arrive. Finding out you are pregnant after the events of the last pregnancy is scary. We are filled with soo many mixed emotions. We know there are possibilities that otherwise most people do not even fathom. I pray for the health and happiness of the new baby. I know this is all a part of his design...can't wait to begin loving on our new little one!

2-14-12 Happy Valentine's Day Ellie Mae

Sorry it has been soo long since I have updated the blog life has been busy...lol  I have a lot of updates so I will start from the beginning...

January 6, 2012 - Ellie's First Hair cut!!  She LOVED IT!!

January 14, 2012 - Ellie's first Birthday Party
We had Ellie's first birthday party at the hall in Grandma's Debbie's church in Ohio.  Talk about a party for a princess...OMG I don't think a toy store has as many toys as Ellie does now...lol

Ellie LOVED her birthday cake...

(video of her eating cake coming soon...)

January 24, 2012 - HAPPY BIRTHDAY ELLIE MAE

I can not believe she is already 1 year old...where did this last year go!!

February 6, 2012
Ellie visited the Orthopedic surgeon to check out her knees and her hips to make sure everything is as it should be.  The Dr was amazed at how strong Ellie is.  She said that most babies that have down syndrome do not walk until they are almost 2 and she believes that Ellie will be walking within the next couple of months.  She also said that Ellie's hips look great and she has loosey goosey knees.  She said she is not worried though she will build the strength in her legs and it should not require her to have braces.  YEAH  Praise Jesus!!  She has to go back in a year to make sure there are no changes.

February 13, 2012 - Ellie pulled herself up to standing using the couch all by herself.

February 14, 2012 - Happy Valentine's Day Ellie Mae!!!

Ellie is growing and changing everyday.  She amazes us, her doctors, and her therapists.  We set goals for her to reach within a month and she reaches them within a month.  She is incredibly smart.  She is able to solve problems and communicate what she needs.  She is the most adorable baby (I'm a little bias)...lol

God has been good to us, the power of prayer is real.  Ellie has overcome many things in her short year.  I know we will be ok.  God's hand is on little Ellie Mae as well as the rest of the family.  He has put her in the care of amazing doctors and therapist that listen and are concerned about what's going on in Ellie's world.  They are on the little details.  Not to mention the prayers for her.  Through God ALL things are possible.  Heidi had a dream when Ellie was still in my belly.  She dreamed that Kenny was playing with Kaylee and Ellie outside and Ellie was running and playing with no signs of down syndrome.  I get goose bumps to think that God is at work already.  Look at how great Ellie is doing.  She is scoring right at the normal range for all children (typical and with disabilities) that is no accident.  God is good ALL THE TIME!!

Thank you for your continued prayers and love for our whole family.

1-1-12 Ellie's first Christmas and New Years

Before I talk about the holidays I want to let you know where Ellie is at now...

She is sitting up all by herself and sitting herself up all by herself.  She sits up by laying on her belly and bringing her legs completely around to the front of her and then pushing up with her arms.  She reminds me of a gymnast when she does it.  It is soo cute.

She is saying la la, da da, ba ba, and making all the major sounds, short a, o, u, and long a, o as well as the oo sound.  Yesterday I was feeding her and she kept trying to grab the food.  I told her no very sternly and she cracked up laughing at me...lol  It made me laugh soo hard...I probably will not think it is funny when she is a little older.  She is growing so fast.  She is weighing in at 16.9lbs  and  we have not measured her yet.  She is wearing size 6-9 month clothes and wearing size 3 diapers.  She is eating regular foods grind-ed up in small pieces so she can eat it.  I think she is finally cutting her first tooth. She has been teething since she was born with no results!!  She is drinking formula in a bottle and regular cows milk in a sippy cup with a straw.

I can not believe how well she is doing.  She is very curious about the world around her.  I do not worry about her diagnosis anymore.  She is going to be fine and do great things I can just feel it.  God has a special plan for her.  

As far as Christmas goes...she was very interested in the paper around the presents but was not very interested in the presents themselves.  Her favorite toy was a xylophone/piano alligator.  She loves to bang on the keys.  As far as New Years goes...she passed out before the ball dropped.

Thank you for praying for Ellie.  She is a miracle from God.  I can not believe the wonderful things she has done for our family and she is only 11 months old.  I speak from experience, God does not make mistakes...he knows what he is doing.  I was soo worried when I first got the news when I was only 21 weeks pregnant.  If I only knew there wasn't anything to worry about.  Thank you Lord for your continued love for our family.