Long Overdue - Esther's new Sister is Home!

Esther now has two younger sisters....Carese and Christy! Christy came home to be Esther's newest sister on May 18.  Esther was not exactly thrilled with the new addition - I think she thought she was just a visitor.  She basically ignored her existence for the first month or so.

Then a transformation began.  I started with Esther being jealous of any time that her favorite brother, Reuben, spent with Christy.  She's basically climb over Reuben and force him to notice her.  This was short lived however.  Just a couple of days after this, I guess she figured out the Christy was here to stay.

The first sign of this was one evening last month that Esther got down on the floor with Christy and they were just interacting.  Soon they were both giggling!  Within days Esther was regularly interacting with Christy, even spontaneously hugging her.  It is so terribly sweet!

Esther has had a great spring and summer.  She loves playing outside.  And she's amazing at pumping while swinging and goes so high!  For a long time she was great at wearing her glasses, but she keeps losing them now that she is so very, very busy!  She spends time in the pool several times everyday - if anyone is in the pool, she wants to be there!

Tomorrow I am taking Esther to Children's Hospital in Seattle for her dental work under general anesthesia.  She has two large cavities that we know of - one is from an upper tooth rubbing on the lower tooth, and the other was where two teeth were pushing so hard on each other that it was impossible to floss between and one tooth actually broke.  She might have more work, but since we couldn't get exrays (she does not like to allow anyone besides me look into her mouth) we won't know what all needs to be done until she's under, had a cleaning and exrays and they they will go to work.

Last week I took Esther in for her pre-surgery appointment and she was such a big girl!  She walked everywhere by herself, stayed by my side and waited patiently!  Biggest surprise of the day was when I took her for her blood draw. Usually this means she sits on my lap, I hold her arm down and she cries...sometimes a lot.  This time she climbed right up into the seat all by herself, I stood next to her with my hand lightly on her free arm (just in case) and she took the blood draw like a champ - no crying, no fighting...just a little flinch when the needle went in.  I stand in awe of this little girlie!

The very day that I first found Esther giggling with Christy, that evening I had all three girls playing around at bedtime in Esther's bed, and I got this amazing video!

Esther's 4th Christmas Season, Plus Surgery on Monday

Esther had a wonderful Christmas season.  She loved all the fun activities.  She was, however, getting very tired of not going places.  We've been keeping her home to try to prevent her from getting sick.  And so far it's worked!  She loves to go places, so this was a hardship for her.  She would see someone getting ready to go, and she'd get her coat and boots on and get so excited, but end up crying when she was not taken with.  Poor Esther.

So here are some photo highlights of her enjoying the season:

Esther loves to help fill my vitamin organizer.  Elizabeth helped out this time!

Esther frosted one cookie and then went to eating all the chocolate chips!

Esther and Carese opening gifts!

Esther got lots of help opening her gifts!

Esther loves to play in the snow - we even had a white Christmas this year!

Esther loves to pretend to shoot guns, so this gift was a hit
- only problem was that she loved to aim at her daddy, and she had good aim!

She loves the snow, did I tell you that?

Monday we head down to Seattle Children's Hospital for Esther to have her tonsils and adenoids removed.  Please pray that everything will go well and that she'll be home again quickly.

Esther has been having an adventurous summer!

She swam at a big lake

She got to go on a Ferry Boat Ride!

Esther and I - having a fun time together!

Esther spending time with her daddy!

What could be better?  Hanging with her daddy and
listening to  live rag time and bluegrass music! 

Esther spent a whole week camping too!

Getting her hair braided at camp.

Esther loving on her little sister, Carese

Getting pulled around in the wagon

And Making New Friends!

We've been slacking on her wearing her orthotic bracess and glasses, but I'm going to be hardcore about them in a day or two - she had outgrown her orthotics and bent the hinge on her glasses, but both of those are going to be available soon!

What if that was me...

My mommy has a friend who went a long ways away to go bring her little girl, Katie, home.  I would love to be Katie's friend.  Katie has Down Syndrome like me, and she has lots of brothers and sisters now like I do, but she has had a very different life than I have had.

I was born to a mommy who loved me and stayed by my side every day that I was in the hospital, and then she I was strong enough she took me home.  Katie never new knew her mother and until her new mommy came and found her, she had spent every day of her life in a place like a hospital, but no one took good care of her their.

I was taught to do the things that I couldn't learn to do on my own - I was taught to feed myself, to help get my clothes on, to walk and run and things like that.  Katie stayed in her crib all day, every day.  She was never taught how to do anything.

I had my diaper changed many times every day, and I was fed three meals a day and lots of snacks too.  I got lots of nummy mommy's milk for my first few months, and healthy formula after that until I could start eating real food.  Then I got to try lots of different foods and I loved most of it. Katie was given a bottle every day, propped up so the formula would run down her throat, make her choke, and a lot of it got on her bed.  I had to have my liquids thickened for a long time so I wouldn't breath in the fluids and get breathing problems.  Katie probably ended up breathing the liquids and getting sick from that happening.

I was talked to, hugged, kissed, cuddled and rocked to sleep. If I woke up during the night, my mommy would feed and care for me and help me to go back to sleep.  Katie was rarely held or touched except for bottle feeding and diaper changes, but the diaper changes were only once a day.  If Katie woke up at night there was no one to hear her cries except for the other children in their cribs.

My mommy carefully weighed me regularly to make sure I was gaining weight like I should and I did great - in fact I'm big for my age!  Katie was probably weighed and when she went home to be with her forever family she weighed only 10 1/2 pounds.  That's not bad for a newborn, but she was NINE YEARS OLD!  I weighed that when I was 2 months old, and I had a big heart problem that made it hard for me to gain weight!

My mommy took me to the doctor when I got sick.  Katie and her friends have probably never seen a doctor until her mommy found her.  If I had lived where Katie lived I would have died.  Many children die in that house - 18 in just one year.  This is so sad.

Thankfully my friend Katie no longer lives at that hospital like place called Plevin.  Thankfully God brought Katie to her forever family and now she's just like me! Well, almost.  But Katie is growing fast - she weighs probably over 30 pounds now.  She isn't walking yet, but she's learning by using a special walking machine.  She gets lots of therapy, especially from her brothers and sisters just like I do.  She's learned to feed herself, and she never gets a bottle anymore.  The best thing she has learned is that she is loved.  She is happy now and always well cared for.

I think the best thing that Katie has gotten to do since she came home to her forever family is to go outdoors.  She's played in the sprinkler, swung in a swing, swam in the lake and enjoyed all the beautiful flowers too.  She loves to do those things just like I do.

But do you know what is really sad?  There are so many other children living at Plevin.  Still waiting for their forever families to rescue them from that terrible place.  Maybe people are working to make Plevin better, but it will never compare to having a home where they are loved and cherished all day, every day.

My mommy want you to help - go to Katie's mommy's blog post to see some of the children still living in plevin and see if your forever child is there.  Or help the Brown's to adopt Gemma by sending money to them through Reece's Rainbow.  Or maybe you could become a Prayer Warrior or an Orphan Warrior like my mommy did!  Just do something. These children need a loving home like I have, like Katie has. It's just that simple.

Fun times with Esther and lost photos!

Esther has had some great new experiences in the past few weeks!  First off was going to the Lynden City Fire Department for a tour.  She got to sit in an ambulance and a fire truck and even got to take home a fireman's hat.  She loved all the firemen, but got a bit board when they talked for too long and she tried to run out the big doors...but we caught her before she got very far!

Esther also got to spend two days at the lake, playing in the sand, the waves and exploring our friend's back yard even thought it was a cloudy day and it even rained a bit.  She got really cold, but her sister, Rebekah helped warm her up by putting her in our Ergo carrier on her back and putting mama's coat over them both.  She also enjoyed posing for the camera during our dinner on the deck.

 Riding on her sibling's backs is one of her favorite things to do.  Riding in her car seat is always fun because Esther knows that going in a car/van/truck means going to go do something fun, usually.  When we leave with out her she is so depressed.  She cries and cries.  This trip she was upset about something, but she then consoled herself by her usual way - sucking her thumb.  I know, she's almost 4 years old and it's getting time to start breaking her of the habit, but I just can't do it yet.

Esther also got to go to a birthday party and she sat up at the table with great manners and made her mama so proud!

Esther has many talents that keep us entertained.  The older kids made up some ribbons on sticks and Esther loved to spin them around, especially when she would get two of them.  She was moving them so fast that I decided to try to do a blur action photo and it worked wonderfully.  Her symmetry of motion with both hands was amazing!

At the dentist's office she did so well that she earned a sticker, and it was such an appropriate sticker because Esther smiles so much of the time. Her and her sisters had a lot of fun with this sticker, that is for sure.

Speaking of sisters, Esther has 5 sisters now and she got to have her picture taken with all of them recently.  Three big sisters and three little sisters, isn't that just wonderful?

Esther loves to smile, as I've said before, and she also loves to pose for the camera.  Often she's making funny faces too or making weird poses, but this is Esther through and through!

Recently I resurrected my I-phone and found some photos on there that I had never taken off.  This is Esther when she had pneumonia.  She was 2 1/2 and spent 5 days in the hospital.  I know it was March 12, 2011 that she was admitted because I got to watch all the events unfold in Japan when the huge earthquake and tsunami wreaked such devastation there.  She was one sick cookie!  Since then we have been using breathing treatments whenever she gets a cold and she hasn't had any major problems with breathing when she's sick.

In the next photo you can see when she was starting to feel better and starting to eat again, but you can tell by her eyes that she wasn't herself again yet.  In the next photo you can see that she is ready to go home.  She's cleaning her hospital room!  She was a very busy lady who wanted to get down and play on the floor and take everything out of the drawers.  I knew she was feeling better because she wouldn't be content in her bed anymore!

In these next photos, you can see when Esther fell and cut her head.  She had just learned to walk well and tripped and fell while holding a plastic cup.  Her head landed on the edge of the cup and it cut through right above her eye and left a round bruise under her eye.  She was quite the little trouper at the hospital, but she did not like having the cut irrigated, not one bit. But between Jessica and I we were able to comfort her through it all.

Esther's a Big Sister!

On March 14 Esther became a big sister!

Esther has had to become a big girl for a while now, as I was on moderated activity due to high blood pressure problems with my pregnancy.  Esther has become a big girl physically - almost 40 pounds now, so I was also having trouble being able to carry her at the end of the pregnancy.  She has learned to do many things for herself now, like putting her own coat on (upside down usually), putting on her own pants (with help), going places walking on her own instead of being carries, walking over small obstacles without stopping and crawling/climbing over them.  She's also communicating better now, using a combination of words and signs  - usually both at the same time!  Her favorite words are "cookie", "thank you", and she's learning to say "Carese", but so far it's just the beginning "K" sound.  She also says "go" (as in "go away, you're bothering me" and "OK" for just about anything.

She had an appointment last month with the ophthalmologist to check to see if her glasses were doing what they had hoped they would (and they are), and Esther was such a big girl there too!  She sat up in the big chair all by herself and did everything they asked of her without one complaint!  All our other appointments found Esther crying and fighting everything.  I was so proud of her!

Esther loves her little sister, Carese.  She asks to hold her (with my help), and will give her kisses and sometimes she sings to her too!  She has never once been jealous, and is content to sit on one side of me when I'm holding Carese, or to lay down in my lap if I'm feeding Carese.  I'm so proud of her acceptance of Carese!

Esther now has new glasses - plastic flexible frames with a back strap - they are working great!  Esther wanted to get weighed too - she's sitting on the postal scale we were using to weigh Carese in this photo:

Esther's next big event will be returning to Children's for her next cardiology appointment.  She's gotten 2 years off from appointment because she was so healthy at her last appointment.  It will be interesting to see how well she handles the echo and EKG.

A New Blog is Born...

...well, kind of anyway!  I have sent many people to my blog for them to read about our dear, sweet Esther...and I do blog about her probably more than any of my other children!  This is not that she is more loved (although that might be true), but because, in general, her life has many more "news worthy" events!

I have imported all my blog posts from the past that had anything to do with Esther's first couple of years, so you  will find lots of things in the posts that don't need to be there in order to tell Esther's story, but then, again, Esther's story is part of our family story and visa versa!

I haven't had a post just about Esther in a while, so I'm going to do an update and talk about events in Esther's life over the past year or so, and touch of some of the health issues we have faced this year.

Last October, Esther started walking for the first time.  She had gone in to Cascade Orthotics, right here in Ferndale, and she was fitted with little pink and white orthotics in order to stabilize her ankles.  Children with Down Syndrome tend to have extra flexibility and join laxity due to their low muscle tone.  Many of them need extra support for their ankles to prevent them from collapsing inward, leading to deterioration of the bones over the course of years and increasing their difficulty in walking.  The orthotics usually are not needed once the muscles and bones "remember" the proper positioning.  This usually takes a couple of years, but in some cases the orthotics are needed for a lifetime.  Esther has never minded them, and actually enjoys helping me put them on.  The biggest challenge in our busy household is to make sure she wears them everyday!

Here's what they look like:

With her shoes on (the insole is removed from the shoe) you can hardly tell that she has them on...just a little pink and clear plastic poking up.  Her gate (how she walks, especially how far apart her feet are) is much better when she has them on, and she can walk faster as well.  She is also more stable on uneven ground.

Esther has had a wonderful occupational therapists visiting us twice a month all through this past year.  Shannon is so sweet and good with Esther and really helped us come up with ideas to strengthen her core muscles to improve her stability, strength and proper walking mechanism.  Esther walked with almost no bend to her knees and hips at first, kind of like walking on stilts.  Then she did good bending her knees, but not at lifting her thighs/bending at the top leg joint.  So we did practice walking on my bed, up stairs, and doing sitting to standing and back down practice.  Her feet are quite close together when she walks now and we are very pleased with her progress.  

Esther was also seeing a pediatric opthamologist this past fall and winter as we were concerned about her eyes crossing at times.  This seems to be more prominent when she is tired, but we are seeing it more often right now...so we might be heading back down to Mt Vernon for eye appts again...

Esther has been on thyroid medicines since she was just 2 months old, so we have to take her in every 3 months for blood work to see if she has out grown her current dose.  She has dosage increases twice, once at 15 months and once this past winter.  It takes a while to get it right, and we did need to tweak it again in the spring.  Keeping her thyroid supported means that she will have fewer problems that are common to people with Trisomy 21 - short stature, thin hair, dry skin, weight gain, brain development...those are all things that are controlled by the Thyroid so it's critical that the thyroid function is monitored in these children.  She and other may still have problems in those areas, but proper thyroid support can minimize them.

Last summer Esther had two bouts of near pneumonia when no one in our home was sick.  Her speech therapists believed that she was having aspiration issues, so we tried to do a swallow study, but Esther did not cooperate at all.  So we decided to treat her as though she had aspiration issues and began to use Thick-It to thicken all her liquids to nectar consistency. Her breathing cleared up and for the first time that I could remember I could not hear "junk" in her respirations!  It was wonderful!  She had a very healthy fall and winter that I am sure it mostly due to the change in her liquids!

Esther has just completed 1 year since her last cardiology appointment, so she has one more year before she has to go back to Seattle Children's Hospital for her next check up.  So everything is going great on that count.

swimming with Rachel

Esther's one big batter this year was just this past spring.  Our entire family came down with a really bad respiratory bug...it sent most of us to bed for a week and took weeks to recover from.  Esther did get it, and did well for the first week or so, but then her breathing began sounding terrible.  We ended up in ER twice and were giving her breathing treatments at home...and we went to the doctor's office once as well.  Finally I went to the doctor to get myself treated for a sinus infection, and then I decided that no matter what I was taking Esther in the next morning just to see if she was doing OK.  She wasn't - I took her to the doctor's appointment and they immediately did a breathing treatment, then off to ex-rays, then another breathing treatment...then they said she needed to be hospitalized immediately.  So we rushed her to the hospital and spent 5 days there as they worked to battle her pneumonia.  She had two kinds - bacterial and aspiration pneumonia.  The aspiration was not from her drinking liquids, but due to aspirating the fluids/mucous from her nose and throat.  This can be very serious.  She was very lethargic for the first couple of days, but perked up after that.  She recovered nicely once home and has not had any further respiration issues since then.  

Last month she wasn't feeling well and had several bouts of crying as though she was in pain (she hardly every complains about anything, so we take crying very seriously with her).  I took her in after about a week of these nightly crying spells and found that she had developed an ears infection.  No cold symptoms, just pain to let us know.  So she was back on antibiotics once again, but recovered nicely...now if her poor digestive system would just recover from them we'd be in great shape!

playing softball in our front yard..

waiting patiently for the opportunity to run home...
she also took the time to look at the cereal box that we used for third base!

Currently she is no longer going to Bellingham for speech therapy as Shannon is on maternity leave and Esther's first home speech therapist, Vicky, is back with us.  Esther can communicate quite well.  She has about 15 signs that she can do, including please, more, ball, drink, all done and others.  She also has many words as well like Mom, mommy, cat, ball, hi, hi dad, yeah and others.  We are currently working on Thank You (she can do it, but it needs re-enforcement), and outside.  We are trying to distiguish her sign for drinking and having her sign for eating that is different - right now it's mostly the same, but she has signed for eat with an open hand, so we are close!

Esther love clapping for daddy's softball team!

sleeping on me...this is a regular event around here

Esther favorite activities are clapping and waving (she absolutely loved the 4th of July parade and loves going to daddy's softball games), playing on the trampoline with the kids, swimming in our pool with her big siblings, wandering around our big yard, clearing surfaces (tables, chairs), and giving big hugs.  She loves to cuddle and sometimes will give kisses too.

Here she is putting a pillow where it belongs

...helping with the laundry

Esther also sucks her thumb (our first thumb sucker), and is left handed like me and her sister, Elizabeth.  But she can use either hand for most things as well.

I think that's about all and brings things up to date.  I'll try to post more things hear as they come to mind, and especially post more photos of her here regularly!

Lastly, here are some photos I took when a young lady, Ali, that I had met at bowling last year came over with a sweater she had crocheted for Esther - as you can see Esther loves and sweater and we had a great time with Ali that day!