Monday, July 18, 2011

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 sweet!

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

Monday, July 11, 2011

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, 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!

Thursday, July 7, 2011

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 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 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 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!