Teamwork

So sweet to see them work together tonight. 

Ella made Aubrey a robot costume. She was excited to wear it. 

Growth - Day 29

I can't express how proud I am of this girl.  She has made tremendous strides in the last 6 months, and is thriving in school and in life.  Part of that is maybe that she has hit her stride, but we have also been doing something to assist her in being her best person....we've started using essential oils, and I wanted to share a little bit here about that.  I'm not trying to "fix" or "change" her Down syndrome, but I want her to thrive and be at her best and be healthy and active and eager to learn and engage in life.  We have seen such positive results in our whole family and I want to share that, because it has made a big difference for us.

Last March, this girl was super sick.  The sickest we had ever seen her.  I had a friend text me about trying something "a little different" to help her feel better.  Sure, why not!  We've just about exhausted everything else here at the hospital.  So she brought me two oils....and it changed our lives.  This was the FIRST hospital stay that we have left without the use of oxygen at home, AND they weened her off 2 liters of oxygen in ONE day!  (that would have taken at least a week before)

That is when I NEEDED to learn more and wanted to learn more.  I did a bit of research and talked with friends and decided on Young Living Essential Oils for our family and Aubrey was my main reason.  I dug into the research on respiratory oils and staying healthy oils.  And I'm always looking into learning more about these oils that have helped her so much and continue to help.

We have a daily routine of oils that we use (think about taking a multi vitamin every day).  I line them up and apply a drop of this and that to her while she gets ready in the morning and off she goes.  And then I have a stash that we use when she is sick or if we are treating something.

Before oils, Aubrey was NOT social at school and after three years there, it was becoming a very big concern with Kindergarten on the horizon.  But she is social now and she has lots of friends and she talks about them at home.  She asks to go to their house to play!  And she has this friend that she apparently does fist bumps with in the morning at her locker!  It has been amazing to see her grow friendships and blossom.

 It used to take a lot of crying and bribery to get her to do any homework or projects for school and now, she actually carries her back pack in from the car, hangs it up, gets out her folder and does her homework!  And when there isn't any homework, she asks for some.  She is writing letters and making people.  Before we could barely get a circle out of her and now her people have bodies and legs!  She has taken off with her learning and it is so exciting to see.

We've been able to keep her healthy!!!  She had one little cold this summer that we took care of naturally, with our oils, and I'm finally getting super comfortable with using them and not freaking out when she has a little cough or sniffle. 

She is getting super active in her life.  She used to spend her afternoons laying around (super tired) and asking for the same show OVER and OVER and OVER.  Now she sets up the tea set, gets her baby out and plays, or asks to help in the kitchen.  I don't have to occupy her time.  She is able to do that herself.

She's giddy in the morning:)  And more verbal.  And I love when she whispers in my ear that she loves me, instead of just jibberish:)

These oils have been such a blessing to us.  I could go on and on with testimonies about how these oils have been so helpful to us.  It has been a way to enhance her life and her health in a very natural way.  So glad that we are able to help this girl be the best that she can be!

(some of the oils we use daily: Thieves, RC, Magnify Your Purpose, Vetiver, Citronella, Lavender)

*If you have questions about using Young Living Essential Oils to enhance your life, helping your kids focus or have more confidence, keep you healthy or help ease sickness and pain, I would love to share my experience with you.  Just send me an email or message.   

Vital Stim Therapy - Day 27

Aubrey gets Occupational Therapy at school as well as Speech Therapy.  The Physical Therapy, we do outside of school (she doesn't qualify at school anymore) and we also do Vital Stim Therapy, with a Speech Therapist.

One thing that we discovered last spring when she was so sick, is that she aspirates liquids into her lungs.  We are hoping that by "fixing" this, she will not get so sick anymore.  The way they do that is by strengthening her swallowing muscles.  They put these electrical pads on her neck and we eat lunch and drink and play for an hour.....twice a week.

It usually takes about 20-25 visits to graduate.  But in typical Aubrey fashion....it is being done in her own time.....longer.  We pasted the typical time frame a month ago, and I have stopped asking them to guess how much longer.  We just keep plugging away at it.

We are doing absolutely everything we can to speed this up and support the work being done and part of that includes ADDING the Physical Therapy to work on her core muscles and upper chest muscles that also support the swallowing.  It is one more thing, and she misses school some more, but we really felt like it was important to add in and they were able to get her a session that was right before her vital stim.  

This girl continues to amaze me with her ability to roll with the punches and goes with the flow.  Not every session is awesome for her, but for the most part, she just does it.

Planning out my day for tomorrow and it includes a lunch date at therapy with Miss Megan and the Vital Stim!

Physical Therapy - Day 26

Thought I would share a little physical therapy with you. We are working specifically on core strength which will also help in so many areas. We meet every other week. And Jen is so creative. 

Aubrey does sit ups to get puzzle pieces. She can do 4 pretty good before she gets tired and they get sloppy.  

These are tiny road cones. She had to tap each one with her toe, and with each lmStarted with one and worked up to three. 

The swing is her "reward"!  After she does an exercise, she gets a rest on the swing. She works so hard and does EVERYTHING that Jen asks her to do. 

There is not a lot of interest in speech therapy at this place now that Aubrey knows they have such a cool gym too!  Sorry Megan, but your tools are not as much fun:(

No Fear - Day 25

Do you remember the post about the lost tooth and how ODD her reaction is?  I got another one for you:

This girl had a MAJOR fall last weekend that included being knocked out, an ambulance ride downtown....and red Popsicles:)

It was a scary day and one that will live with me for a long time. The physical scars are mending and I'm trying not to be a helicopter mom....but it's hard.

Any of my other kids would have freaked out at being strapped to a board and carried of by the fireman. Scared of the fast ambulance ride and being in the ER surrounded by strangers. Not this girl!

You would think that doctors and hospitals would scare her because she's there so much, but she isn't. She was calm and cooperative. Her biggest concern was a bandaid for her head!  

She never got a bandaid, but she talked that sweet resident into a second Popsicle after I said no. (He was so sweet signing to her....and THAT was the ticket....cause she signed it to him and he just went and got it without me knowing!)

There are some things that I will never understand about how Aubrey thinks. And sometimes that can be really challenging, but this week I'm choosing to be GRATEFUL in my confusion. I'm GRATEFUL that she wasn't traumatized any more than she already was. I'm GRATEFUL that she is resilient and healing. I'm GRATEFUL that she's ready to climb and jump and play again....even if it makes me nervous now. 

I'm GRATEFUL she's mine...extra chromosomes and all!

Healing day 22

For those wondering where we went.....it's a long story, but the short version is she fell and we are busy recovering.   But I wanted to share a really cool set of books I came across. Excited to order these and read them and then share them! 

http://themighty.com/2014/10/these-parents-found-a-beautiful-way-to-teach-kids-about-down-syndrome/

Teeth -day 15

Tonight Aubrey lost her 3rd tooth. And this is her excitement level....tears. Her first tooth was lost over Christmas vacation, in the car, somewhere between Wisconsin and Minnesota.  (She swallowed it, we think) Her second tooth, she lost while in the hospital last March.  Zero interest in that tooth. 

For most kids, losing teeth is a right of passage. "I'm one of the big kids!"  Aub is different. She doesn't care. She doesn't understand. And in some ways it is traumatic I guess. She kept signing for me to call the dentist. 

It can be a challenge to understand her thought process and console her. Some days are like that with our girl. 

So we dried the tears and I pretended to call the dentist and told her they were closed and sleeping. She seemed to understand and I assured her I would call tomorrow. 

Some days are like this....

Worry and Help - Day 14

Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own".  

It would be very easy to become overwhelmed with raising Aubrey.  And to be honest, sometimes it does become overwhelming.  But when it does, we stop and pray.  We pray for strength to get through the days.   We pray for wisdom to make the best choices for her life.  We pray for peace.  We pray for understanding.  We pray for help.  And we trust God to get us through it.

I learned right away, that I can't do this on my own.  Life is gonna be busier and more challenging and taxing with Aubrey.  But I don't think she is the only kid in the world that does that to parents and I don't think that Down syndrome is the only diagnosis that makes things challenging.  In fact, I think there are more challenging children out there....boys in general for example:)

I'm admitting that it is hard.  And it has taken me years to admit that out loud.  I always strived to show that life with a child who has Down syndrome is great and easy and she is such a blessing.  She is all those things most of the time, but it is challenging and taxing and hard too.  There is a balance that can be hard to find, but we do our best.  Sometimes that means we take the easy route and skip things.  Because at that moment, that is what is best.  Sometimes pushing her isn't what is best.  And sometimes, I just don't have the energy to put into doing the work.

It takes a village and sometimes a city to make it all happen.   Sometimes there are days that are hard....sometimes weeks.....and sometimes months that are hard.

One of the hardest things that I have learned to do....is ask for help. We live in a world/society that puts the pressure on mothers to be SUPER MOMS!  We have to do it all.  Be it all.  ALL.  THE.  TIME.  I wanted to be that mom.  I strived to be that mom.  Pretended to the outside world that I was that mom.

Asking for help....even from my husband....felt like I was failing at my job.  Asking for help, meant that I had to admit to the outside world that I wasn't a super mom and I couldn't do it all.  Admitting it to myself was easy, but admitting it to the world is hard.

Here's the thing, God didn't put us on this earth alone.  He created partners for us.  And I got the best!  And he created friendships.  I got the best of those too!  He created families and church families and neighbors.  He did that because we weren't meant to be alone....We weren't meant to live life alone.  We are meant to lean on each other and help each other and befriend each other and help each other.

This journey has changed me.  I could never do it all on my own, but now I can readily admit that and actually ask for help when I need it.  NOT asking for help, does not benefit me or my family and we get burned out very quickly.  

I hope that it has made me a better friend as well.  When I can, I try to practice random acts of kindness.  I try to drop a meal off for a friend just because they could use it or stop by with coffee or insist on helping, because I know that asking is hard. 

I have learned to worry less about what the world things and more about what my husband and kids think and feel.  It doesn't matter to them if I do it all.  It just matters that I do what I can with love.

My encouragement to you is this:
First pray.  I always heard the saying, God won't give you more than you can bear.  But when Aubrey was born, a friend reminded me that God IS going to give me more than I can bear, so that I will lean on Him and trust in Him and call on Him for help.  And He is going to carry me, when I just can't do it any more.  My faith is what makes this journey a success.  My faith is what gets me through, because my God is so great and good.  There is nothing He can't do and provide for us.  My Aubrey's life is planned out by Him and His plan is better than any plan I could come up with.

Do not find shame in asking for help.  I don't think it gets any easier, but when you are able to actually have a conversation with a doctor without 5 kids in the doctors office with you, it will be worth it.  

We all have struggles and challenges.  Mine might just be more visible to you, as I chase my two little ones down at the grocery store or volleyball game.  But we all have something we are dealing with.  So take the time, to help someone out.  Bring them dinner or coffee or muffins to make the morning smoother.  Reach out to someone that you haven't in a long time and just let them talk.  Just be a friend.

Worry and change of plans

I just finished a long post....but my computer is refusing to publish, so I'm blogging on my phone...which is not fun or easy. But I didn't want to go another day without posting.  

So here is a few pictures of our everyday joy!  Aubrey loves to cook/bake and her sisters are so patient and encouraging when she asks to help. 

She isn't always easy to work with. And it's her way or the highway most of the time. 

So glad these girls have each other!

Physical Therapy - Day 9

Carrying her own library books and checking them out herself

 For Aubrey's entire life, we have pushed her to be her best.  And to do what typical kids do or what came next in her development.  It has made her a better version of herself.  She is driven and determined and I love that about her....most of the time.....except when "all by myself" turns into a very time consuming event....and I'm in hurry:)  She is very independent and usually willing to try doing it herself first or with minimal assistance.

Climbing on the playground at school

Aubrey hasn't had Physical Therapy (PT) for two years.  It wasn't provided her at the school and it just didn't fit into our schedule to do it outside of school.  We have surrounded her with a very active lifestyle and there isn't much that this girl won't try to do.

Riding her modified bike - I don't know about you, but I ALWAYS ride my bike in my swimsuit:)

 Yesterday she had a PT evaluation done.  We are blessed with people in her life that always focus on what she CAN do and her strengths FIRST and then let us know what can be worked on and improved upon.

Balance walking on the bleachers 

 Her PT let us know that she is very strong for someone with her diagnosis and age!  She does very well in most areas of daily activity.  There are certainly things that we are going to work on with her, but her PT is actually very pleased with her abilities at this point:)  Refreshing to hear.

Making toast HERSELF

To give others an idea:  She is functioning at a 3 year old level PHYSICALLY according to the evaluation done.  It is important to keep in mind that sometimes she can do things that typical 6 year olds can and sometimes, she can't keep up with her 3 year old sister, but on average, that is where she is at physically.

They are going to work on her core strength which will assist her in all areas of life, but specifically they will help her run faster and stabilize herself in her chairs at school and when eating at the table and increase her ability to keep up with the kids in Kindergarten;)  We are excited to be back in PT and working with the awesome Jen!

Wordless Wednesday (What we do while waiting at all those doctor appointments) - Day 8

Crayon roll - never leave home without it

Working on squares by connecting dots

I spot 3 letters!

H is for Miss Hall (Sorry Miss Senne....I'm sure she wanted to write S for Senne, but it was too hard)

These A's were supposed to be triangles

Slow and Steady - Day 7

She isn't at the same level as her peers.  She isn't at the same level as her little sister.  She isn't at the same level as anyone....She's at her own level and she OWNS that.  And she is proud of that and she celebrates that.  My prayer is that she always understands that and celebrates who she is and what she can accomplish.

 I knew when she was born, that she was going to be delayed and she would never keep up with the kids her age.  When Emelia was born, I knew that one day her little sister would pass her up, in all areas of life.  What I didn't know, is how that would feel...until this year.

Emelia is faster in the gross motor areas.  She can ride a bike faster and run faster and is swimming faster and jumping better and dancing more.

 Emelia is better at fine motor skills.  She cuts with more ease and is writing most of her letters without frustration.  She can copy her name off her desk.

They are essentially the same height and weight and wear a lot of the same clothes and they are both potty training.....still.....(we have good days and bad, but that's a post for another day!)

Aubrey CAN cut lines and some circles.  She CAN write the first two letters of her name (Au) WITHOUT looking!  She can write H and M.  She can READ!

It is hard to see Emelia do things that Aubrey has not yet mastered, and with such ease, but I have to remember that ALL of Emelia's accomplishments are just as amazing and praiseworthy as Aubrey's are, no matter the order they happen in.  And no one cheers louder for Emelia's successes than Aubrey!

The day I'm waiting for, is the day that Aubrey realizes that she is not keeping up....

That day, my heart will break for her.  And I will love her and hug her and remind her of how much harder she works to achieve stuff than others and I will remind her of all her successes and accomplishments and I will remind her that all people are different and unique and that if we were all the same, and did all the same stuff, the world would be boring....the same things I remind my other girls, when they are feeling down or left out or not good at something.

 Because, when I step back at the end of the day, my girls are all going to go through emotionally rough patches and Aubrey is no different.  When I step back at the end of the day, she's just like her other sisters in so many MORE ways than she is different.  Sure, her experiences and feelings will look different, but she will still feel the same challenges and heart aches that all kids do.

 It's going to be hard.

No doubt about that, but the good news is that I'm practicing on her 3 older sisters, so by the time a boy breaks her heart.....I'll be ready for that conversation!