Wednesday, November 14, 2012

Esther Turns Four Years Old!

This past spring we began to notice that Esther snore while she sleeps, and she was waking often to cry a little and go back to sleep on her own.  There were also times when she would wake up in a panic, with a raspy voice, almost like she felt like she was having an asthma attack of sorts.  We talked with her doctor about this during one of her sister, Carese's well child check ups, in July.  We discussed that this can be a sign of sleep apnea, and that her tonsils and adenoids may be enlarged and causing a narrowed airway.

After that I made an appointment with an ENT. But then I tried diffusing essential oils in her room at night and giving her Ibuprophen before bed and the snoring/restless sleeping seemed to abate, so I cancelled the appointment.

Fast forward to October and Esther got a cold - a bad one.  She went from not feeling well Saturday to real breathing problems Sunday night.  We are talking the kind of breathing you can hear from another room that puts a mother into full fledged panic mode.  I was thankful that I had started breathing treatments for Esther the moment she showed signs up being sick, so I knew I had done everything I could and that she needed to see the doctor ASAP!

I took her to see the doctor the next day, after videotaping her breathing during her sleep.  She was diagnosed with having croup, an ear infection and very swollen tonsils. They tested her for strep throat, but thankfully she did not have that. She prescribed antibiotics and oral steroids, and she was breathing better within hours.  But for the first time she reacted to the steroids with a emotional episode...she's never done anything like that before and I hope she won't do it again as it was so hard on both of us.  She was upset and nothing I did seemed to help, but thankfully it only lasted about an hour.

 The doctor watched the little video and said that she definitely has sleep apnea problems, especially when ill.  She made a referal for Esther to see an ENT at Children's Hospital in Seattle and we also talked about monitoring her oxygen during the night while she was sick.   Just that morning a friend had offered to give me her puls-ox machine, so we were all set to make use of that!  Her oxygen levels were fine after that, but I'm hanging onto the puls-ox machine for now.

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Esther's day at Children's went exceptionally well.  She had two appointments that day - cardiology (I'll blog about that one once we get the final results, but so far so good), and then ENT.  It was determined that her tonsils and adenoids are enlarged when she is healthy, and this is very common in children with Down Syndrome - their tonsils and adenoids are normal size or enlarged, while their airways are small.  The ENT explained that children's tonsils and adenoids grow faster than the airway until they are around 11 years old, so that any child with problems much before that time, the problem will only get worse.

So Esther is now scheduled for surgery on January 7.  We covet your prayers for this in two ways - that she will be healthy in the weeks leading up to the surgery (we are keeping her home from here on out - I don't want her to get another upper respiratory illness and have another night like we had), and that she won't experience any of the common complications that children with Down Syndrome usually experience with this surgery (pneumonia, inability to eat/drink for days, dehydration and others).  Thank you in advance for your prayers!

Now to better news!  Esther got to go to the zoo for the first time - and she loved every minute of it! The otters and penguins really put on a show for her, and she really enjoyed their antics!

Esther turned 4 on September 20 - can you believe it???

Esther is learning new words, and putting words together to make sentences - like "close the door"  and "cookies please"!  She is also learning to take off her clothes, and she tries to put them on too.  This is especially funny when she tries to put on her siblings clothes (and a little embarrassing at times when she selects undergarments!).

She also loves to help with laundry, especially sorting diapers and soakers.  She loves to read books, and points to pictures and says the words if she know them.  She will also point to pictures if you ask her where something is!

But above all, her favorite thing is playing with her dollies.  She loves to play momma, but her favorite thing is to have her dollies hug and kiss, or dance together!

Wednesday, August 22, 2012

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!

Monday, July 16, 2012

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.

Tuesday, July 10, 2012

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.

Thursday, June 21, 2012

My Future's So Bright

I gotta wear shades!

She is such a little entertainer!  She loves an audience.  She found her big brother Jonathan's hat and shades, put them on all by herself, and gave us some great laughs!

Tuesday, June 12, 2012

"Her Heart is Repaired"

Esther sporting pigtails on a Sunday!
Esther, Carese, Daryl and I went down to Children's yesterday for her cardiology appointment.  It's been 2 years since her last appointment!  We left very early (in the car at 6:45) in order to drop some elastic off for a seamstress to pick up, accommodate feeding Carese on the way, and making one stop to get sun glasses for Daryl.  Even with the careful planning and not having to feed Carese until we got to Children's, we just made it with enough time to change her into her nice clothes, comb her hair and put on her braces/shoes before her 10:00 check in time!  I ended up nursing Carese (under my nursing cover of course) while getting our IDs and checking in!

Carese and Esther did amazingly well on the way down.  Carese mostly slept, waking up just before our stop to get sun glasses, so we were able to change her diaper and get he dressed then (I had only changed her diaper before we left, in hopes that her outfit that I'd picked out for going to Children' would still be in great shape when we arrived).  Esther played quietly in the car with her Jessie doll and looking at books.

Once at Children's Daryl got the job of chasing her around, and did he ever have to work to keep track of her. With all that sitting quietly time in the car, she was ready to run and investigate!  The weird thing was that she seemed to know exactly where to go every time we moved.  She even went straight for the "purple doors" that lead to the cardiology wing...but it's been 2 years since she was there!

Her first appointment was for her echocardiogram of her heart.  This is basically a detailed ultrasound of the heart, checking for any possible leaks or problems.  This take about 1/2 hour and she has to lay on a hospital bed during the entire procedure.  She did marvelously!  They do have a TV up high on the wall and allow the parents to select a video for their child to watch.  We picked a cute looking computer graphic cartoon (cute characters, bright colors, but we soon found out that the morals and language was not the best), and it did help a lot to keep her distracted.  Esther's Jessie doll (from Toy Story) was her constant companion, and she also watched the video as well as danced around to entertain Esther (Esther loves to make Jessie tap dance on any surface, as well as having her read books or reading books to Jessie...but her favorite thing is to make Jessie dance with and kiss other dolls, especially the man rag-doll that Rebekah made for her).

After the ultrasound, we headed over to the cardiology room for her EKG (a dozen wires attached all over her body) and she was quite  concerned about this, but she made it through without too much trauma.  Next was getting a blood pressure reading and then a Pulse-Ox reading too.

Next was waiting to be seen by the nurse.  This took about 20 minutes, and required that we pull out my Iphone and let her watch The Incredibles for a while.  The after another 20 - 30 minute wait (during which Carese went to sleep), we finally got to see our favorite Cardiologist, Dr Kemna.  She had cared for Esther all the way back when Esther was home the first time and was going to Children's every two weeks, as well as being on rounds during one of the weeks that Esther was staying at Children's before she had her open heart surgery. Dr Kemna took one look as Carese and said "you are a brave woman" - too funny!  We really like Dr Kemna, especially as she explained to us that Esther heart is completely repaired, unless someone knew that she had undergone a repair, the repair would not even be noticeable in any tests!  She said that Esther didn't need to be seen again for 3 years!  Hooray!

We then went to the cafeteria, as we were all getting very hungry, and had a snack or yogurt and chips.  The last stop was to go up to the lab and get a blood draw for Esther's thyroid screen.  Her pediatrician is now in charge of monitoring her thyroid instead of having to see a specialist (if anything shows up funny, then Esther will go see the endocrinologist again).  This requires having her blood tested every 6 months (down from every 3 months now, yay!).  Since we were at Children's, and they have the best phlobotomists in the world there, I had the lab request send down there and got it taken care of there!  It went well, as usual for Children's lab draws.  During the "poke" Esther was understandably upset, saying over and over "I'm OK, I'm OK" while tears were forming and running down her cheeks.  At one point, she leaned her head back onto Daryl's shoulder and snuggled with was so sweet (wish I had a photo, but I wasn't expecting a photo opportunity during a blood draw).

One note about our time at Children's - everywhere we went, Esther got attention for her cute antics (Jessie went everywhere with her and tap dance for more than a few observers).  Carese was also the recipient of many oohs and awes as she is still so tiny.  Most little babies at Children's are shrouded in their car seats, leaving one to only wonder as to why they needed to be at Children's.  I'm afraid Carese just shouted "healthy newborn" there.

After that we were free to head home, but not until after we stopped to have lunch at the famous "Dick's Drive-In".  Esther was asleep before we were even half way to there.

With full (heavy) stomachs, we headed home.  Our only stop was at a rest area north of Marysville.  We took care of diaper changes and feeding Carese in the shade (the car was quite hot as we were driving our Camaro on a super sunny day, and the Camaro has lots of windows and a black interior - the AC doesn't work anymore).  Of course Jessie came along and found that the cement picnic table was a wonderful place to tap dance!  Esther enjoyed some free cake from the free coffee stand there, as Daryl and I took turns making a stop at the bathroom.  It was such a wonderful break in our day - peaceful, shady and with a wonderfully cool breeze to enjoy!

Our next stop was home, where I went for an immediate nap and Esther enjoyed playing with her siblings.  A very tiring day, but it went even better than expected, that is for sure!

Lastly, Esther got her first majoy hair trim a  couple of weeks ago - all her hair is finally one length!  It was a major improvement as you can see:

Wednesday, May 2, 2012

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.

Friday, February 24, 2012

A Day in Esther's Life

Here is Esther all ready for the day,
with the latest headband to keep
her old glasses in place
I thought you might be interested in hearing about how Esther usually spends her day.  Granted, this is a perfect day and lately they are few and far between (I've been down with a sinus infection for 7 weeks), but it gives you an idea!

Wake up at 7 am, cuddles and juice with her medications in the juice (thyroid and vitamins), diaper change (or on a good day, we'll have her sit on the potty), and her glasses are put on.

8 am is breakfast with the other children, she self feeds and loves to participate in prayer time!

After breakfast she gets dressed (she needs lots of help with this) get's her hair brushed and her glasses on (if she isn't wearing them yet) and gets her braces and shoes put on.  If she has a cold, she also gets a breathing treatment at this time, and she doesn't mind this as long as there's something PIXAR playing on the TV!

Esther loves playing with baby dolls
- but she usually takes their clothes off ;)
I do some therapy things with her - reading a book together, trying to learn new words/signs, threading large wooden beads on a shoelace, playing with a shape shorter toy, naming body parts, reading a book with animals and learning animal names and sounds.

Here's Esther helping wash dishes!
During chore time she usually helps a bigger brother or sister, putting things away, or maybe making another mess for them to learn to teach her to pick up behind herself!
During school time, we try to have her play quietly or color in coloring books.  Our biggest challenge right now is getting her to consistently wear her glasses, and trying to find them when she takes them off any old place.  I'm trying to teach her to give them to me when she takes them off and I've a little success with this.  She recently got new glasses that are much easier on her so she wears them longer.

The rest of the morning is pretty much free time for her - to play with her toys or siblings or just hang out with mommy.
At lunchtime she is fed and gets her second juice (we found out that she is milk intolerant - we are trying out lactose free milk, but haven't figured out if it works or not yet) and some yogurt.  If she needs it she gets another breathing treatment at this time.

Here is Esther playing with ponies
 - she's making the kiss!
As you can see, she goes cross eyed
when not wearing her glasses
and trying to focus on something close.

After some play time she goes down for her nap at 2 pm and is allowed to sleep as late as 5 pm, but we wake her up then if she's still sleeping so she can be ready for dinner.  She gets another breathing treatment before dinner if needed.
When daddy gets home she gets excited and will often sign to us the I need to go greet him with a hug, and she'll usually give him a hug and ask to be picked up.  She's really getting fond of her daddy!
She loves to climb up to the dinner table once it's set and "re-organize" things...and is usually very ready for dinner.  She is not a fast eater and likes to warm up to her food, often pushing it away at first and then taking it back when she's ready for it.  She is usually just getting into the swing of eating when we are done, so she continues to eat while we have family devotions.
For the rest of the evening she plays with her siblings or watches a movie snuggling with mommy or daddy.

Esther is so used to her breathing treatment that
she will usually hold it for herself!

Around 8:30 it's time to get ready for bed, which includes getting on pajamas, removing her braces and shoes, a breathing treatment if needed, brushing teeth (she doesn't like this, but she tolerates it if you give her breaks).  Then I put her to bed, and we pray together.  I kiss her good night and say what I've said to all the kids for over 25 years at bedtime - "Good night, I love you, See you in the morning".
She is usually a good sleeper, but she quite frequently decides to leave a little gift in her diaper after being tucked in for the night, and she will refuse to go to sleep until her diaper is changed...otherwise we usually don't hear from her again until morning (unless she's sick and wakes during the night needing meds/comforting).
Life for Esther has been not very consistent while I've been sick, but now that I'm feeling better I am going to try to get her/me back onto her normal routine.  But that will only last until she becomes a big sister (Carese, Esther's little sister in hiding,  is due to join our family around April 2nd).  I do have her routine posted on the dry erase board, so it is possible for the girls to do everything for her, but with me out of commission for a while, things will be out the normal for her for a while, to say the least.
Esther cuddling with Mommy, using my baby belly as a pillow
- Carese will usually kick Esther when she does this!