Musings on a Dark Night

Three Years.

Yep, it's been three years since Esther has been sick enough to be hospitalized.  Just 6 days past the 3 year mark and Pneumonia has taken up residence in Esther again.

This time it happened much faster, but I was prepared!  Since her last bout with pneumonia I purchased a new stethoscope and a Pulse Oximeter from Amazon.  No, this was not recommended by her doctor, but I knew I needed to be equipped so that if Pneumococcus came around again I could get Esther the help she needs before she became so very very sick like last time.

After her last bout, our doctor prescribed breathing treatments (albuterol and pulmicort) to be administered to Esther whenever she contracted any respiratory illness.  This has been invaluable in keeping her out of trouble!  But I still ended up taking her in to the doctor so many times when she was sick "just in case" to be sure that she wasn't going bacterial.  That was working well, but a fellow mom of a child with Down Syndrome told me that I could purchase a PulsOx online - I was all over that!

With the PulsOx and my stethoscope (I listened to her when healthy and when sick and listened to recordings of different breathing tones from an online site) I was able to track Esther's breathing and be able to note changes, both good and bad, when she was ill.  The PulsOx really helps as you can't look at a child and tell how well they are oxygenating unless it is really bad, and you don't want to go there - blue lips are terrifying!  Even faster breathing/increased work of breathing don't always tell you what you want, especially if you are administering breathing treatments at home, as the medications your child breaths in can temporarily cause increased heartrate and faster breathing - so it can be a false indicator of how your child is doing.  And a child relaxed in sleep an look like they are breathing fine, when in reality their oxygen level is low enough to cause concern and you really can't tell!

Esther developed a cough on Thursday (her little sister had been sick with a cough for about 5 days).  I started breathing treatments right away.  Friday she had a fever but still was playing almost like normal so I wasn't concerned.  Saturday no fever, still a cough, so I continued breathing treatments (I listen to her breathing and us the PulsOx before and after breathing treatments as much as possible).  Sunday after her morning breathing treatment her breathing did not clear up as much as I liked and decided to take her in just to make sure I was on track.  At the dr appointment, I realized that the prescription had been printed incorrectly and I was supposed to be giving her the Ibuterol every 4 hours ( as it had been in the past) and not every 6 hours like it said on the box.  I should have checked....anytime your child's prescription refill comes back with a change that you did not hear about directly from the doctor, please check with the doctor!  I had noticed a change on her pulmicort prescription as it said "use daily" whereas before it was "use twice daily" - and yes, that was a typo.  People make mistakes, pharmacy technicians make mistakes.  When it comes to your child's health, it never hurts to double check, but missing something can.

So since it was 3 hours since her last breathing treatment the doctor had us administer her next ibuterol nebulizer treatment there in the office as she also noted that Esther was wheezing a lot, all over her chestl both on inspiration and expiration.  That helped - not a lot, but her O2 levels were on the low side of acceptable - 94/95 verses 92/93.  So she sent us home doing Pulmicort twice daily, and Ibuterol every 4 hours around the clock.  I was to take her back in if she got worse, or if there was no improvement by Tuesday.

Sunday she did good, Sunday night/Monday morning she was still doing well.  Her breathing was a little noisy, but would clear up with breathing treatments and her oxygen levels were OK (94/95%).

Around dinner time on Monday I noticed that she was not wanting to play, looked a little off (red around the eyes), and was easily upset.  I noted this so was extra careful when her next breathing treatment time came around.  In that short time, she had been watching a movie and seemed OK, but when I picked her up she was warm, quite warm.  I listened to her breathing and she was junky everywhere.  Her O2 was around 91-92.  After her breathing treatment I listened again and the first three areas I check sounded nice a clear, but the last area (her lower right) did not.  At first I didn't even heard breathing sounds.  Then I heard more of a popping/gurgling and then a little wheezing.  Yep, red flags for me.  Her O2 had not improved either.  I decided give her some Advil (I have found that Advil can help with breathing as it is anti-inflammatory and can help to reduce inflammation in Esther's narrow airways, and her doctor has confirmed this as well as my own research online)  and to call the Dr office and put her to bed, hoping that over the next few minutes and a change of position would bring on a change for the better.  Nope.  By the time I was on the phone with a nurse, she was asleep, 102 degree fever, breathing 50 breaths per minute and her O2 was down to 88 and staying there and that right lower area still sounded wrong.  The nurse confirmed my conclusion...she needed to go to the ER.

We arrived just before midnight and they pretty much took her right back to a room.  Long story short, I told the doctor what I had been doing for her and what I had noticed in her breathing.  He asked if I was a nurse.  I said no, but that I was Esther's nurse and knew her, better than anyone else.  I said this with confidence, but I was not "in his face".  He thought it was great that I was so pro-active in her care!  He said that he was hearing exactly what I had described to him, but he wasn't sure what he was hearing, so he called for exrays and had us administer blow by oxygen to help get her O2 levels up. After the chest exrays the doctor came back and said I had been right on.  She had a small area of pneumonia, he believe just beginning, and that she needed to be admitted, and ordered her to be started on IV antibiotics and fluids as she was not interested in eating or drinking (and had not done much of either all day).

There wasn't a bed ready for us in Peds (the pediatric floor) so we had to wait in ER for a seemingly long time.  The pediatrician on call (happened to be the very first pediatrician to care for Esther when she was transported to the hospital after she was born at home and was struggling to "pink up").  I told him everything and he was so encouraging and said that he thought that we had indeed caught this right away and that she might do very well since we were getting the antibiotics on board before the bacteria went rampant.  I have to admit I was so thankful that I had been so proactive in her care!

Finally, around 4 am, we were transferred to a room on the peds floor.  We settled in and soon Daddy came to visit and bring us some things from home before going to work.  She finally fell back to sleep again just before her Daddy left and slept until around 8 am (she had slept from after the IV placement until just before moving to the new room).  I, however, was not able to sleep...as her alarms would go off if the blow by got moved too far away from her face when she would move in her sleep.

Through out Tuesday, she was wakeful, but content to stay in bed, play with her dolls or watch movies.  Her O2 was hovering around 92, but would occasionally drop below 90 so I'd have to do the blow by when that happened.  By the afternoon we were no longer doing blow by, so I was happy about that.  The new pediatrician on call confirmed that she needed to remain in the hospital until she can stay above 90% while sleeping without any extra O2.  I was really hoping that she would do well.

Within minutes of falling asleep, her O2 hit 84%...alarms set off and I knew I was in for a long night,  She pretty much needs to have the O2 nearby to keep above 90%.  I have gotten a few cat naps between alarms, but Esther moves a LOT in her sleep.  Right now it's almost 1 am and I just didn't feel like trying to sleep again..of course, she's not had her alarm go off more than once while I've been writing!  Go figure????

Until Esther, I was never woken in the night by an alarm clock that I set so I can wake up  my child and care for them.  This started when she came home (tube feedings via a pump among other things), and has been a part of my care for her whenever she is sick.  It just goes against my mothering instincts...it just seems wrong to wake a sleeping child!  Thankfully Esther is a good sleeper and goes right back to sleep, and sometimes even sleeps through her breathing treatments!

Nights like tonight, weeks like this week, test you as a mother. They test you are a person.  They test what you really believe.  They test what you are willing to do.  When Esther's oxygen alarm goes off, I rocket off the "parent couch" before I even know what I am doing.  I quickly check to see where the Oxygen mask is and get it in place (all the while that alarm is screaming at me).  Then I start shaking if I am not already (adrenalin),  Once she is back up into the 90s, I check her blanket, position and diaper.  If her stats are slow to come up I check her leads and positioning to see what is interfering.  My goal is to be a little of a bother to the nurses as possible without jeopardizing Esther's health - I've heard other mothers crying in the hallway, I heard the other baby's alarms going off every few minutes, I know my nurse is dealing with a very sick baby next door.  Once she is doing well I settle back onto my couch and watch her for a while and pray for her if I remember, then I try to sleep again.  Only it takes a while for my heart to stop racing.  For the panic to subside.  And then just when I drift off, or maybe even before that, the alarm goes off again.  All I want to do is sleep.  I haven't truly slept in nearly 48 hours now.  But I have to keep on keeping on.  For Esther, Because she needs me to.  Because this is what God has called me to do.  And to do it without complaint (OK, so I'm not very good at that one, but God is working on me, especially this week!

You know, in America, we are sold the "American Dream" and commercials yell at us to "have it your way" and have "the easy life."  But God calls us to die to self, to live for Him.  Two very different world views.  When I am out in the public eye like I am right now, I interact with people who can not fathom why we would have so many children.  But it completely blows their minds that we would adopt ANOTHER child with special needs.  What an open door to talk of God, His blessings, and His amazing Grace!  If we Christians are living the American Dream, will anyone ask us why we do what we do?  Or how we do what we do?  God is glorified when we are stretch to our limits and beyond and are living only by HIS grace as then others will see Him in us and stand in awe at what God can do through mere mortals, even though they don't realize that they are seeing Him.

So, why did I tell you all this?  Because I was contemplating a lot of things tonight.  I needed to talk and there are very few people around, even online, to talk to.  And then I thought maybe there are other moms out there with children with respiratory challenges that might benefit from what I had learned, or find encouragement in knowing that they are not alone in the struggle to take good care of their children with special needs.  Maybe you are expecting a baby with special needs and want a glimpse into your possible future.  Maybe you are adopting or considering adopting a child with special needs (YAY!!) and want to be prepared.  Maybe you can not relate to anything I have written, but you know someone who does...maybe you can better understand what they are going through when their child is sick.

I have to admit that after this week (read my blog post from earlier today - 11blessings.blogspot.com)  that I wonder how in the world I can possibly care for two children with special needs and how I will do what I am doing right now when one is sick.  I don't know.  I can't see the future.  I am not in that future.  And I keep reminding myself that God has called me to this.  That He promises the His grace is sufficient. Not for tomorrow.  Not for the "What If"s.  But for THIS MOMENT.  This second.  The next breath.  I keep reminding myself when I worry or fret about tomorrow, I am on my own and disobeyng God's command "do not worry about tomorrow."  As I have heard it said, when the going gets tough, get on your knees, or something like that.

Whatever your reason for reading this, my purpose is, hopefully, to give a helping hand to others walking down this road or walking with someone on this road.  The road of giving for the sake of another.  Caring and loving when all you want to do is be cared for and be loved....caring for the "least of these" because that is the job God has given to you.  To serve unseen.  To give your last ounce of energy without anyone noticing.  No finish line, no trophy, but an undying love for you child and a deep appreciation for the gift that your child is, even though others see your child as a burden.  ALL children are blessings - especially those with special needs.  The blessing is in learning to give when you have nothing left to give, and to hang on tight to your Savior when you are hanging by a thread.  God is faithful.  If Jesus is your Lord and Savior, then you too have the promise that He will always give you the grace for any and all circumstances that you find yourself in.  Not strength from yourself, but that peace and strength that is given that you can not explain, that does not make sense.  It's called grace - unmerited favor.  We don't deserve it, but God gives is freely and it is always sufficient.

If you don't have Jesus as your Savior, then you do not have The Creator as your Father, and you are on your own, and that is a very, very hard place to be when you child or loved one is sick and suffering.  If you want to read about how you can have Jesus as your Lord, and the Creator as your loving heavenly Father, please read my blog post First Things First (or how to know you are saved).

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Esther "Can Do" Therapy

Esther LOVES to help Carese...
far more than Carese likes to be helped, though!

Summer has arrived, and with it some beautiful weather!  In the past few months, we were given a swing set which is getting a lot of use now, and we got a steal of a deal on a swimming pool (ours died of old age last year) as well.  The kids haven't been in the pool much in the last two weeks due to cool/rainy weather, but that all changed this week!

Esther enjoyed our first "Lake Day"
 

Summer also means "Lake Days."  We have some sweet friends who live on the lake, and they invite us over almost every week for some beach time.  We all enjoy this special treat!  Last Friday was our first "Lake Day" and we all had so much fun.  Esther spent almost the entire time in the water, and enjoyed every minute of the day.  Carese kept me busy, and it took a while for her to get used to wearing a life jacket, but Esther had no problems with the "life jacket all the time" rule at all!

Last winter we heard about a neurodevelopmental program that a dear friend of mine had discovered, which had made a huge difference in her child - leaping 18 months in development in just 4 months.  The second 4 months did not show this great leap of developmental progress, but there were other extenuating factors.  But she had continued to progress more rapidly with this program than with any of the other therapies that they had tried.

Esther learning her alphabet while getting her hair combed,
after getting dressed and getting her glasses on.
While we are doing therapy with Esther we have Mozart
playing on our stereo for brain stimulation.

We researched the "Can Do" program, and found out that they would even be at our Christian Heritage Homeschool Convention!  Even though it was difficult to come up with the up front costs, we decided that it was the best time to start this program for Esther, as during the summer months I have less on my plate (homeschooling break) and it would be good to start this program before Esther's new sister come homes (her adoption should be finalized next winter).

Esther had her first evaluation at the beginning of May, and at that time I was also taught everything I needed to know to implement the program that they custom designed for Esther.  We will be sending in updates every two weeks and later every month.  We will have her re-evaluated every 4 months (that is how often they are in our area).  Can Do services 8 states (WA, ID, CA, ND/MN, MI, OH and NY) and families drive a long way to use their services.  Thankfully, we only have to drive about 1 hour away!

Here are some photos of Esther's therapy!

Esther leaning animal sounds while getting deep pressure massage
to her hand/arms/feet/legs.
Jessica is doing the massage in this photo.

Our therapy checklist for the week, and her daily meds/supplements
most of which go into her yogurt.
The penny bank and pennies is for fine motor skills
- she has to pick up the pennies and put them into the bank!
That is Daniel's job - to help Esther with this therapy.
You can also see "bite tubes" in a baggy.
The bite tubes are part of her mouth stimulation and for
strengthening her jaw for better speech later.

Esther gets a vibration massage to her hands a feet while she eats her yogurt
this helps develop her brain/body connection to help her overcome
her high pain tolerance and prepare her for potty training.
Here Rachel is working with Esther

Esther's memory cards.  She is learning the names of the items on the cards
both to say them and to point them out on command.
She can only do one at a time, but we are working to help her be able
to point to two in a row and then three, and then four.
You can see Carese is also at the table "playing" therapy.

These are photo cards that I made.  There is the word for the item in the photo on the back
We show her the word, and then the photo, and then the word again
She loves these cards and is saying more words now, as well as
pointing to the object in the photos!

Dayton is helping Esther learn her numbers.
All the children (except Carese) help Esther with different parts of her therapy
as each child is able - it's their "school" for the summer!

This is Carese - she stole this sucker/sponge that we use for mouth stimulation with Ether
She loves these (she's been teeting)
We use this with Esther,one is dipped in very warm water and swished around in Esther's moujt
The other one is put in very cold water and we alternate between the two.

Esther has many other therapies, but I'll save those for another post!

If you want to check into this program, check out their website - Can Do

They are a christian company who focus on teaching parents to work with their children at home to enable their children to reach their greatest potential - it's for children with any disabilities, even ADHD, dyslexia and Autism!

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.

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!

"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 him...it 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:

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!