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 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!

A busy summer/fall!

Esther is now Three Years Old!  And she's wearing glasses!

She is also going to be a big sister!  We are expecting blessing #12 on April 2nd!

That is why I haven't posted any updates for Esther since July!

Here's some updates for Esther right now - She is not currently in any therapies right now because she graduated out of the birth to three program on her birthday.  She is doing really well on all developmental levels.  She's behind typically developing children, but not that far, and she gains ground all the time as she is one motivated little girl!

Most parents of children with Down Syndrome put their children in public school preschool programs at 3 years of age so they can continue to get the free therapy.  We have chosen to not participate in that at this time.  We found out that we can enroll her and only go in once a week for a 1 hour session to see a speech therapist for 30 minutes and then an occupational therapist for 30, but for now we are happy with her learning here at home with all her busy siblings.

She has been very healthy this summer and fall.  We have experimented with less and less thickening  for her liquids and she did so well that now the only thing we thicken is her morning juice as we give her all her medications in the drink and the thickening helps to get the meds to suspend in the drink - but we are only doing half the thickening for that now too!

She is using more verbal communications - and we are starting to pick up on more of them. She is beginning to call family members by name and says words like "thank you" and "baby" and "please", although people outside out family would probably not understand them - but we do!

Her latest favorite things to do are playing/hugging/kissing her baby dolls, escaping out the front door (we now try to keep it padlocked as she will go outside in the cold without her coat/shoe), giving hugs to everyone (we call them hug-fests),  praying at meals and at bed time (and sometimes over her snacks/juice too!), saying new  words and having us know what she is saying and she still loves to be cuddled anytime, anywhere!

One very exciting thing is that Esther is featured on the Smiles of Life calendar this coming year - they should be out any time now  - you can see the photos we took on my last blog post.  If you are interested in getting a copy of the calendar, leave a comment and I'll let you know once I know how to get them!

Esther's Photo Shoot!

I submitted an application to see if Esther could be included in the 2011 Smiles Calendar and she was accepted back in June.  Last Friday we met with Amy and Lesley for Esther's photo shoot.

When we got there, the photographer was not there a her camera had not been working properly and she had to go home to get her back up camera.  So while we waited, we did our own little photo shoot:

Jessica and Esther watching the boats - this photo is my favorite for style...

More boat watching

Esther gives THE BEST HUGS in the world!

And she is so stinkin' cute!

Esther being a little uncooperative, but she did quite well and was even adorable photogenic at times!

Sisterly Love...so sweet!

I think she was trying to take big steps just like her big sister!

Esther's Soother

Most babies hold onto and/or rub something when they are soothing themselves.  A "blankie" seems to be the most common.  Esther has an unusual item that she uses to sooth herself, and she uses it when she is sucking her thumb:

Her Hair!

She plays with her pony tail, pig tail, whatever...in this case she had gone to bed without a pony tail so she "played" with her hair all night long turning into the hairdo reminiscent of the 1960's bee hives!

It looked worse that it was...she's made worse before - one mat took me over 1/2 hour to get out!

But there's one blessing in this "smoother" - it can't get lost!

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!

Second Chances

Everyone needs second chances, I know I do.  I had to give someone else a second chance today and it was sooo worth it!

When Esther was just teeny tiny and we were trying so hard to get her home from the hospital, I had one of the worst days, I was so disheartened.  I wrote about this day in a post entitled "It's Sooo Hard" and I talk about an encounter with the pediatrician who was caring for Esther during that time.  Every 3 days or so we'd get a new pediatrician and see saw back and forth as to what is would take to get Esther home.  I was very offended at a remark he made and have always held this against him.

Until today he's never been the on call doctor when I needed to take Esther (or any of the children) in to be seen when our doctor was not available.  I always ask who's on call, as I prefer to have Esther seen by a doctor who has seen her before when she is ill.  When I heard who was on call, Dr F I'll call him, I almost decided to wait, but Esther really needed to be seen again and soon.  So I decided to make the appt anyway.

But first a  little more background to set the stage for this second chance.  Children with Down Syndrome tend to have very tiny everything - fingers, toes, heads, forearms, upper thighs, blood vessels, ears, airways and ear canals.  Esther has typically sized things for all in the list except the internal ones.  And her ear canals are tiny - and one is exceptionally tiny.  Since she was just a baby she has HATED to have anyone, even me, mess with her ears at all.  Don't even go near them...when a doctor holds the otoscope she starts to cry and tries to hide.

Until Today.

As I was waiting for the doctor to come into the room, I could hear him talking in the room next door and in my room was a battle....no, Esther was quietly snuggling in my lap (a sign that she's really sick as she's usually trying to escape out of the room).  The battle was in my mind.  I was so ready to have an attitude when he came in.  But I kept reminding myself to think on "whatsoever things are true..." and during the time we worked with Dr F before I was sleep deprived and in a very difficult situation to say the least.  I kept reminding myself that I had heard from others that they just loved him and that he was so good with children.  I forced myself to be pleasant, friendly and "pretend" that we were seeing him for the first time - I reasoned also that he sees so many babies that he probably wouldn't remember us anyway!

So, in he walks - he immediately focused on Esther, saying "hi" and getting her to interact with him.  While he and I talked he was gently warming up to Esther...by the time he was going to listen to her breathing, she was starting to get a little concerned, but he comforted her and talked to her and before I knew it, she was sitting quietly while he listened...she has been doing so much better lately, that I chalked it up to getting accustomed to the procedure.  Then it was time to look in her ears...I braced for the battle...he started talking about birdies and doing little whistles (this has been tried and met with failure by several doctors in the past), but his whistle was sweet and bird-like.  And then the miracle happened - she allowed him to look in her ear while she sat quietly...I was dumbstruck...but that ear canal was larger and more accessible, the left ear will be different, right?  Kind of - she fussed a little, and he just put light pressure on her head and she calmed right down and let him look into her ear for a good long time!  Even then, he only got a half glimpse of her swollen, pink ear drum, but enough to confirm that the antibiotics she was on were not doing the job.

So, the moral of the story?  We all need second chances!  We all need to give others second chances - we might be the ones missing out on the blessing if we are bitter or holding onto resentments.  And we are definitely the ones suffering when we do that, as bitterness and resentment do the most damage to the ones holding onto them!

And  here's eye candy - first a photo taken the day before my "first encounter" with Dr F:

Esther - 1 week - with a feeding tube and oxygen

And here's Esther last week at her daddy's softball game:

she loves going to the softball games - she loves to clap whenever anyone claps!

What to you think - would Dr F have recognized her???