Greetings from the Nursing Home

Here you go honey, this old ball-&-chain has something for ya.  Thanks for the pik-&-Stik.  Ooh, I know what I can do with this "stik". . .where are my elastic denims & denture cream?  Honey, I need help with my Depends.


Note: this style of clothing for picture only.  I do NOT dress like this everyday people!

There Is A Light

This morning I work up and I found little stinky-butt at the head of the bed playing.  She was trying to roll over from back to tummy :o)  I guess her crazy acrobatics caused her to migrate to the head of the bed.  Of course being a paranoid mother, I worry that my Circ De Soleil baby will get her head trapped between the mattress and crib railing.

As many of you know I have been suffering from PPD (Post-Partum Depression).  After multiple crying episodes and feelings of failure, I finally got back in to see my psychiatrist.  On Thursday of last week we added on nortriptyline, a tricyclic antidepressant that works on norepinephrine, in addition to my increased dose of Lexapro.

Have you ever read the side effects of these medications that mess around with brain chemistry?  Involuntary muscle movements, twitching of the face & tongue, hallucinations, erratic heart rates, etc.  Then it goes on to say that some of these reactions may be permanent.  As in forever!   Yep, really makes you want to take the medication.  Well, so far I am not twitching and I am hopefully not hallucinating or having delusions.  I mean, how do you know if you have hallucinations--you believe that they are there unless someone tells you otherwise.  Seriously, I doubt Ellie could tell me that I am hallucinating.  Anyway, I think that all is good.

The past 2 days I have been doing better.  Yesterday I actually left the house willingly for something that had nothing to do with a doctor's appointment.  My mother (who is helping out do to my bum back), Bear Bear and I went to a British Coffee & Tea shop.

www.friartuckspantry.com

They have scones!  Brownies!  Digestive biscuits!  (if you do not know what those are--ask Matt Abbott)  They have French Press Coffee!  Lots of coffee!  We had coffee from Yemen.   I didn't even know they exported coffee. Mom and I ordered this amazing brie & bacon sandwich with raspberry chipotle spread.  Yum :-)  Of course Little Ellie Bear slept through the whole thing.

Andrew and his 2nd wife

Guess what Andrew did?  He ordered me one of those poles that picks up objects from the floor.  Oh goody.  Nothing like making me feel decrepit and old.  Maybe he should have also ordered me a "Help, I've Fallen & I Can't Get Up" button.  Seriously?!?!  Okay, I know that it is actually practical, but still.

Down Syndrome Clinic

Hum. Maybe I do like bath time!

Check out my mow-hawk.  I am a punk rock baby!

Two days ago Andrew, Awa Grandma, Ellie Bear and I spent four, yes, I repeat four as in 4, cuatro, quatre, τέσσερα, vier, quatro, 繁體中文版 hours at Dell Children's for DS Clinic.  There is a multi-disciplinary approach to Ellie Bear-Bear's care.  She saw an occupational therapist, a dietitian, a social worker, and a developemental nurse and Developmentalist.  


At the time of the visit, Little Bear was/is 3.5 months old.  


You know how they say to "never ask a woman about her weight"?  Well, I know that you (well the Grandparents) are dying to know.  So here are her stats:


Weight:  12 lb. 1 oz  (Birth Weight 6 lb 10oz)----90% on DS chart
Length:   22 3/8 inches  ---70-90%
Head Circ: 38 cm (yeah, I know it is in metric and the others are not.  I still have baby brain so simple addition confounds me let alone metric conversions)


Sweet Cheeks "performed" nicely for everyone. 

• She consumed a 6 ounce bottle complete with a loud belch that would impress Uncle Matt in front of the OT.  
• She then held her head up at 90 degrees while on tummy.  
• She batted at stethoscopes while on her back.
• She pulled a "babies gone wild" and lifted her shirt up to her face and sucked on it while kicking her legs up in the air like a cheerleader.
• She rolled from tummy to back.  Then in front of the Developmentalist Dr. Del Angel, Ellie Bellie tried to roll onto her belly  (that one shocked me.  Bear-Bear is trying to roll the other way?!?!).
• Plus, and I think she got this from me, she "talked" up a storm with everyone say "aah", "I" and then. . .are you ready. . . a 2 syllable coo shocking everyone.

Everyone says to have high expectations with children who have special needs.  However,  with DS, the high expectations were for her to be at a 1-2 month-old level, ie only lifting the head at 45 degrees while prone and starting to show interest in things.  Hello!  Expectations!  Ellie is at a 4 month-old level across the board.  


Now granted, many babies with DS are off to a bad start.  They have heart surgery and feeding problems.  All of their energy went to staying alive and then growing so these babies will be at a 1-2 month old level.  


We are so happy and impressed with Ellie's health and progress.  We could not ask for more.  We will continue to work with her while recognizing that Ellie will follow her own schedule. Something tells me that we have both a shaker-&-mover as well as a talker on our hands. . .I wonder where she got that from?

A Theurer New Year

(Mark, Josel, Papa Charles, Mama Dunja, Megan, Andrew, Anna, Ellie)

New Year's Day according to the Bear-Bear:

My parents put me in the car with the doggy.  She was hyper and barked at the people at the gas station. I was very tired though so I slept through most of her antics.  Mommy's back really hurt so we kept stopping but I do not remember any of that.

We got to Plano and I saw Grandma Dunja and Papa Charles.  They are so funny and gave me toys to play with.  I liked to bat at them with my hands, but sometimes I miss.  I will be a ball player when I am older.

I met my Uncle Mark and Aunt Josel the first night along with cousins Megan and Alexander and their Grandmother.  We had so much fun.   Uncle Mark held me and then he made all of this food--goulash with potato dumpling-like things that I wanted to eat so bad.  As usual, I got formula.  I always get formula, but now they add some apple juice to it and it is yummy.

The next day we went to Mi Cocina for lunch.  I am a good baby.  I like to eat with the family so I wait until the food arrives for everyone else and then cry for my formula.  See, I drink my bottle while everyone else is eating too.  Except for mommy. . .

That night Grandma Dunja made a pork roast that smelled delicious.  Again, I got formula.

Just before getting into the car I met my Uncle Tom, Aunt Michele and cousin Haleigh.  Aunt Michele held me and talked to me.  Haleigh touched my head.  Haleigh wondered why I stole her crib.  I tried to tell her I was just borrowing it.  Haleigh likes fun hats too :-)

Bye bye for now--Ellie Bear

01.05.10 David "Chubbs" Stillman-'Special' is the right word

" 'Special' is the right word for Kirkwood High student" --St. Louis Today article 1/5/10

http://www.stltoday.com/stltoday/sports/columnists.nsf/bryanburwell/story/85971FDCA335EF3C862576A20018DAB0?OpenDocument

This is a very touching story brought to my attention by Cathy, my mother. It reinforces that children can show respect for and engage in true friendships with people of special needs.  I only hope that Ellie can be treated with the same respect and honor by her friends.  That her talents are encouraged by her friends and that her successes are celebrated like "Chubbs".

Two side notes:
1. Today is Matt Abbott's birthday.  Big shout out to you!
2. Thank you so much for everyone's support during this difficult time for me.  I appreciate it more than you will ever know.  Your support, love, and prayers have made me stronger, which in turn helps me to overcome these obstacles that life throws at all of us.  They have also made me a better wife, mother, daughter, and friend.  Thank you.  Life is a journey and not a destination someone once said.  Right now the path is pretty bumpy.

Ellie loves the new play-mat that Andrew selected for her.  She is becoming more interested in her surround environment and she is starting to reach up at objects of interest.

Child of the Inner Light

The Baptism of Ellie Marie

December 26, 2009

It has been said, according to the Roman Catholic Church, that Baptism is the greatest gift that you can give your child.  Baptism has been referred to as the "gateway" into a life with God.  Ellie Marie can learn about God's unconditional love, His forgiveness of sins, and His healing power.  Through her faith in God, she will be able to handle the many challenges that life throws her way.

As you can see, Ellie's is still sporting a mow-hawk form in spite of the Holy oil and Holy water.  She is modeling a Christening gown from 1903 (maybe even older).  The gown was my Grandfather Alphonse Bolte's.

Deacon Dan Wright is a fabulous person.  He married Andrew and me in this exact church~St. Thomas More.  Dcn Dan did a personalized Baptism for dear  Ellie.  Not only is he a Deacon, but he also works as a special education high school teacher in the Round Rock School District.  Maybe he will be Ellie's teacher one day!  Dcn Dan discussed how Ellie is a special child of God and that God has handpicked special parents for this special baby.

Bath vs. Tism:
In the photo above you can see little Bear having cold Holy water poured over her head three times.  We fully expected a full on screaming fit since Ellie screams bloody murder as I pour water over her head during bathtime.  (Andrew refers to bathtime as baby torture).  Yet Ellie surprised us and just remained silent during her Baptism.  Maybe it is the Holy water?

Godparents play a special role in the Baptism and throughout Ellie's life.  Jessica and Mike Nunnery (aka the parents of Baby Grace and Grantman) are Ellie's chosen Godparents.   Andrew and I are Grant's Godparents.

I Will Get Through This

I find myself constantly repeating the mantra "this too shall pass" and I really hope it does.  With depression, the neurotransmitters are all butting heads. In my case, the serotonin and norepinephrine. There are too many receptors for some and not enough for others.  That leaves the brain's wiring all tangled and leads to irrational thought patterns.  This means that I feel doomed and that things will forever be this way.

I would like to think that the increase in Lexapro from 2 weeks ago was successful, but I would be kidding myself otherwise so it looks like Dr. S will be getting a follow-up phone call from me come Monday.  I am scared because I have maxed out my Lexapro dosage and I have already tried several other meds.  Again, the doomsday thought processing--is there any medicine left that can help me?

Poor Andrew has been so supportive and helpful, but I know that this is hard from him too.  He went from helping out with Sophie and Ellie to also helping me out--physically (back problems) and emotionally.

Simple tasks seem like mountains to climb.  For instance, I needed to pack for our trip to Plano.  It was/is a simple 2 day trip.  I cried and stressed which I know are completely unproductive so I tried some of my cognitive-behavior-therapy strategies.  I made  baby-steps of packing Ellies feeding supplies, then her diapering supplies, then clothes, then Sophie's food so forth and so on.  Only I lost it when I couldn't pack some of Sophie's toys because I couldn't bend down and get them off the floor!  I couldn't pack our travel toiletries in the traveling pack because they were in the lower cabinet!  Fortunately my very patient and very loving husband reassured me and helped me out.

I have a job and it is a big job--take care of house, Ellie, furbabies, and be a good wife/mother/daughter/friend.  I feel like I am failing in all of them.  I cannot pick up Ellie without help.  I cannot lift her carrier.  I cannot do her physical therapy on the floor anymore.  I cannot play fetch with Sophie.  I cannot use the leash on her.  Laundry is near impossible without help.  Sure, I can get them into the washer but I cannot reach down and transfer the clothes to the dryer or then get them into the dryer.   I am crying in the middle of the night with the irrational fear that Andrew will leave me because I am a burden and a kleenex sodden mess.  It is stupid and I know this.  Ellie is alive, fed, warm, and knows that her mommy loves her.  My furbabies are loved, fed, clean and know that I love them.  Andrew knows that I love him and value him.  I know that I will be better with a combination work, meds, therapy, supportive friends, and my faith in God.  So I say, this too shall pass.