Saturday, June 26, 2010

Summer Photos!

Advanced for the Delayed

. . .That is what Ellie has been described as by her developmental therapist Jan.

Yesterday was our ECI session and as usual, our little Ellie Bear-Bear was a superstar!  Jan says that Ellie gets the award for her kiddo who made the most progress this month.

Motor:
Four days ago, the Ellie Bellie Bear started pulling herself into a sitting position all by her self!  It seems that our baby bootcamp has been paying off!


What a big girl!  Where has my little baby gone?


We are to continue with the baby obstacle course--this is where Ellie is encouraged to scooch or inchworm over her boppy pillow to get to a toy.  We are now promoting the "pop-up" position.  I like to call it kneeling because that is exactly what it is.  Ellie is to kneel while supporting her hands on a box.  This will help her develop the muscles that needed to eventually pull herself into a standing position.  Good thing we lowered the crib mattress.


Ellie in the "pop-up"/kneeling position.


When inchworming forward, the Chunky Chicken is starting to get good separation of her arms and legs as in she alternates moving each arm and each leg.  This is good progress as last week she was moving both legs together and then both arms together.



Evidently Ellie didn't like the toys I picked out for her.


She still favors bearing weight on her left side so we have some ways to encourage Ellie to shift her weight to the right--ie such as getting her to reach out with the left arm by tapping her left hand with a toy.

Fine Motor/Language:
I am lumping these two developmental skills together since we are signing to communicate.  As you guys now know, I am slowly becoming more fluent in ASL.  I try to sign everything to Ellie and she is starting to recognize these signs.  In vain we have been working on "milk".  She could care less.  Actually, she could care less about drinking milk as she is more interested in her solid foods.  Ellie has, however, a significant interesting in getting "out"--as in out of her high chair, out the carrier, out of the jumper.  Because of this interest, she has discovered that signing "out" gets her just that--out.  "Out" is a more complicated sign so she has been grabbing my fingers and bringing her hand together.  She then throws my right hand.  Hence the baby sign for out.

The Bear-Bear is also starting to wave "bye-bye".  She picked this one up quickly as we only started waving last week.  She keeps her arm at her side, but opens & closes her fingers in response to "bye-bye".


Ellie "talking" to her toys in the jumper.


She is still babbling up a storm and is loud.  Hum, I wonder who she got that trait from ?  Dadadada is still the main phrase mixed in with raspberries and babababa, oohyah, & abu (you know like the monkey's name from Aladdin?).

Jan recommended that we turn to PBS and watch Signing Time.  I have never seen this show so I will look into it.

For actual vocalizing, we made flashcards with bold capitals letters--B,D,M,P,W.  Example: I hold the "P" flashcard next to my mouth and slowly make the "puh" sound for the letter.  This way she can see how my mouth moves and what the letter looks like.


Just for kicks: Tama hoarding Sophie's bone.

Thursday, June 24, 2010

Ellie Cannot Have Her Oats & Eat It Too

I have a rhetorical question.  What is the point of torturing my baby for a IgE food panel blood draw if you do not check for oats?????  That was the whole point in having the pedi order the food panel--oats vs. wheat allergy.

Today Ellie Bear had a meeting with Dr. L, the allergist.  We did a lot of history taking and then we proceeded to skin testing.  Ellie cried during the skin pricks, but she then calmed down easily.  She was all wild baby moving around on the exam table trying to get to the exam table paper and the picture on the wall.

Ellie is negative for a wheat allergy.  Yay!  That was also seen on the IgE food panel.  Now Ellie has never really had wheat but we tested anyway because the infant oatmeal that she had 3 months ago said "may contain wheat".  We then tested for oats.  That she did react to.  I am not surprised given the severe reaction she had after eating oatmeal--recall the ER visit for hives, lip swelling, & vocal cord swelling.  That and the rash she got from the Aveeno Baby Lotion--also has oats.

So, now we have to avoid all products with oats.  Oat allergies are not common in general and those who do have oat allergies tend to be allergic to wheat, barley, nuts, dairy, egg, etc.  Therefore an isolated allergy is odd and intriguing to Dr. L.  Will she outgrow this allergy? Maybe. 

Dr. L has requested that we hold off on peanuts and tree nuts until he "says so" and to wait until 12 months to introduce eggs.  He isn't worried about dairy since she does well with the formula, the yogurt, and the negative IgE test.  We are not to order food from restaurants or bakeries because of the potential for cross contamination.  In one year we will skin test oats and the nuts and go from there.

Until then, the EpiPens stay in the diaper bag an in our kitchen.

As for the IgE test, the allergist's office called the lab to see if they still had Ellie's blood to run the oats, but the lab tossed the vial yesterday.  

Now we can try infant wheat cereal.

Wednesday, June 23, 2010

Take Me Out To The Ball Game

Do you know what I love about summer?  Baseball.  More specifically, the St. Louis Cardinals and Albert Pujols.  
Combine my love of the baseball with learning American Sign Language and what do you get?  A history lesson.
I have been trying my best to sign many everyday objects and activities to Ellie as a part of speech therapy.  Of course that meant I had to learn sign language.  Fortunately, my neighbor raided the Austin Public Library and lent me many books on baby signs and ASL.  Andrew joked that I now “speak” ASL better than Spanish (and German, but then I never knew more than 5 words in German).  
Ever watch a baseball game and see how there are different signals for “strike”,  “safe”, and “out”?  These signs originated from William Ellsworth “Dummy” Hoy, the 3rd deaf professional baseball player in the major leagues.   Hoy created these signals because he couldn’t hear the calls by the umpire or the cheers from the crowd.  Hoy played from 1888-1902 most notably for the Cincinnati Reds, two different D.C. franchises (the Senators & Nationals), and are you ready??? the St. Louis Browns.  As for the “Dummy” part of his name, it stems from the old saying of “Deaf & Dumb” where dumb stands for mute, not stupid.
Anyway, there is your history lesson for the week and again, “Let’s Go Cardinals!”.



Guess what Ellie can do?  She is able to pull herself into a sitting position!!!!!  

Go Ellie-Bear!


Thursday, June 17, 2010

A Girl's Weight

There is truly only one time in a female's life in which it is appropriate to inquire about her weight and to be happy about the fat rolls--infancy.

Here are Ellie's stats from yesterday's well-child exam:

Weight:
17 lb 5 oz
90% DS chart  What a chunky monkey!

Length:
26.5 inches
75% DS chart  Where did she get this height?  I blame the Bolte's.

Head Circ:
 41.3 cm
50% DS chart (only 3% on the regular chart).  Funny, her head doesn't look that small, but then again, she does have those chunky Andrew cheeks.

Her pediatrician thinks Ellie is doing great.  

She agrees with my thoughts on seeking additional physical therapy outside of ECI and has written out a referral.  I had been researching various PT places looking at location, insurance acceptance, patient reviews, and if they also offer Speech & OT.  Of the places that I called today, there are waiting lists.  It looks like it may be a month before Ellie can even be evaluated for additional PT.

As for Ellie's oat vs. wheat allergy. . .we have been referred to an allergist and Ellie has her appointment on Thursday of next week.  Yesterday, Ellie & I ran up to the Dell Children's lab for a CBC and IgE Food Panel.  She was a super trooper on the blood draw! 

1. The CBC screens for iron-deficiency anemia which is common among babies this age as they transition from formula to solid foods.  The CBC will also screen for leukemia which is unfortunately more predominant in children with DS.  

2. The IgE Food Panel is a blood test that looks at the antibody development against 40-93 different foods.  To even come up positive for some of these food such as Eggs, Nuts, Shell fish, she would have needed to have been exposed to them.  Hopefully this test will give us a better idea as to which grain product(s) to avoid.

Wednesday, June 16, 2010

Happy 9 Months Ellie!

Can you believe it has been 9 months already?  That is how long it took to cook my little cupcake.  Well 9 months & 1 week.


Look Mom!  I have flip-flops!

Yesterday we went swimming for the first time.  At first I was a little apprehensive.  You see, Ellie hates baths.  We actually put her in the baby bath inside the regular bath-tub and use the shower.  She seems to tolerate the shower okay, but that is after I sing the "bath song" from Monta Z. Biant's Sign, Sing, & Play

Turn on the hot
Turn on the cold
Water in the bath-tub
Water in the bath-tub

You get the picture and I sign all of this in the process.

How did swimming go?  Well, see for yourself:






I guess Ellie Bear likes swimming.  All of us had a great time at the pool!



Angelika with Haley & Jaden


My Godson Grant, Haley, & Jaden


Ellie, Anna, Haley, Jaden, Grant, Jess, Baby Grace

Monday, June 14, 2010

Good Bye 20's & Hello 30's


Today I turned 30.  



Almost 30 years ago, I wore this exact dress.


Isn't the back cute?



Apparently the dress is rather tasty.



Showing some belly of the Ellie!



Trying to appear all sugar, spice, and everything nice.



Big girl sitting in the high chair!  (with props :-)

Sunday, June 13, 2010

Biopsy, Germany, & Therapy

1. Friday I received my biopsy results.  Finally!!!  This is after hounding the office to call the pathology lab.  As much as I loathe being annoying, it is a character trait that I have been unable to break.  In this case, being persistent in a kind manner reaps results.  Good news!  It is a periapical scar/granuloma.  In plain English--a noncancerous mass in the jaw that does NOT require further treatment.  Apparently, this type of lesion is rare.  What is even more interesting is that these tend to occur after a root canal.  That is interesting because I never had any trauma or dental work to that tooth or the surrounding teeth.  So why did this happen?  I do not know.  Nonetheless, I am greatly relieved even if I am still rather confused and greatly curious.

2. Baby Drews is home!!!!  All week Andrew was spending time in "The Motherland"--in Minden, Germany.  The business trip was a success!  He arrived home in a timely fashion.  He did not miss his connecting flight.  He did not hit rush hour traffic.  All of that being said, he has been working all weekend so far.  Boo!  There are two things that I would like to point out.

A. I sent Andrew off with a camera.  He was worked so hard that he only got pictures of:





B. He did not bring home a Minden mug or shot glass.  What are we to do?  We only have 117 shot glasses in our collection so far.  How is it supposed to keep expanding if we do not add to the collection?


Now for the fun part :-)



On Thursday, good ole Jan stopped by for developmental therapy.  Our little Ellie Bear is a Super Star.  Of course, we already know that, but Jan even agrees with me.  She thinks that Ellie is going to be an "early crawler".  Yes, I realize that she is practically 9 months old.  Nine months!  Where has the time gone?  However, Ellie is compared to those in developmental therapy so 9 months is early compared to the other babies with delay.

So here is the exciting part. . . I plop Ellie down on the floor with her toys and Jan & me start to discuss what has happened in the past two weeks.  No lie when I say that Ellie chooses that moment to scooch to her toys.  Seriously, she was not doing that in the 5 minutes before Jan arrived.  Show off!  She scooched all the way across the floor.  Super Ellie!!!

Gross Motor: Scooching.  We are not trying to get her to sustain the "bathing beauty pose" to strengthen her oblique muscles.  We really need to focus on the right-side since she is mostly doing things on the left.  We are to continue encouraging the all 4s position.  Jan has informed me that it is "inevitable" and "not preferred" that Ellie will rock back and forth while on all 4s and land in a sit.  She told me not to get upset.  When she does this, she will prefer to sit rather than stay in all 4s and will thus lose shoulder strength.  Therefore Jan showed me ways to keep Ellie in an all 4's position.  Thank you Jess for the Bumbo tray--it is now a HUGE tool in helping Ellie.  Ellie can sit independently now :-)  Not for long periods nor can she get into the position herself but we are making progress.

Fine Motor: We seem to be skipping this section and I am not sure why.  I am working on finger feeding.

Speech: Andrew was shocked to come home and not see the scooching but rather the various sounds that Ellie can now make.  Ba ba ba, da da da and other syllables.  She is finally signing "eat" the "correct" way and if I am not fast enough with the food, she uses both hands to sign "eat".

Thursday, June 10, 2010

Still Waiting

For those of you who are wondering. . .

1. Yes, I went a little crazy and changed the formatting of the blog. . . the colors, the background, etc.  It was time to spice things up a bit.  I chose the windmill in honor of Holland.  I have been setting aside a little each month for a future trip to Holland--for when Ellie graduates High School.  What a treat it will be to see the wonders of Holland.  Celebrating Holland!  The journey continues!

2. No, I have not received my biopsy results yet.  I have been kindly inquiring the oral surgeon's office and will call, yet again tomorrow morning.  It has definitely been more than 10 business days and that has taken into account the Memorial Day weekend holiday.  I was originally told 7-10 business days for results.  My thought is they took one look at it and said "oh this isn't urgent looking"  or they lost it.  If they lost it, I will will probably lose it mentally.

3. Andrew returns from Minden, Germany tomorrow!!!!


I cannot remember if I posted this one already.  Don't you just want to nibble on her little toes?

Tuesday, June 8, 2010

My Great Story

It is not often that I pay attention to the advertisements in the magazines that I read.  These days, I am lucky if I get a chance to read a magazine.  Many times when I do see the ads, they are for clothes or hair products or cars or sports drinks, and unfortunately even for cigarettes.  Many magazines usually feature very beautiful models who look nothing like the your everyday person.  So imagine my surprise when flipping through both Glamour & Self Magazine I come across this ad.  I did a double take.  Yes, it is true!  An advertisement for the My Great Story Campaign sponsored by the National DS Society.

NDSS' My Great Story on http://ndss.org/stories is a place where people with DS or people who know others with DS (ie neighbor, sister, aunt, son) can share inspirational stories.

Below is a link to a short video clip about a fellow St. Louisan and her brother who lives with her.

Living With Down Syndrome
http://www.kplr11.com/news/kplr-living-down-syndrome-st-louis-moisio-060710,0,4931534.story

Social Development

Today Ellie accomplished two very important milestones!!!  Go Ellie Bellie Bear-Bear!!!!  Both of them occurred during today's playgroup.  

1. Social Development: Ellie actually acknowledged and showed interest in another baby.  Typically, she ignores the other kiddos and plays with her toys.  These other kiddos can be practically crawling on her and she doesn't even give them much attention. Today, however, she looked at and and tried to "hug" baby Brennan.

2. Motor Development:  The Baby Bear did two crawls, yes crawls, to get a toy--as in she was up on all 4s and she moved her little legs and arms forward two consecutive times.  

Language Development Update: Just before the weekend, Chicka-Boom was in her little play-yard while Andrew and I were eating dinner.  We hear "da da da da da".  Yay!  New loud talking from the Ellie Bear. She obviously doesn't mean da-da specifically but these are new letters.  Currently, Ellie & I are working on signing nursery rhymes such as "Baa Baa Black Sheep" and "Old MacDonald".  The sign language books are courtesy of our neighbor Pat and we have an Old MacDonald Board Book.  Ellie thinks I am very funny and I am hoping that she is storing all of these signs in her brain for future use. 

In other Theurer news, I visited the oral surgeon yesterday for my post-biospy appointment.  It was quick 5 minutes in which he looked at my incision and then sent me on my way.  There were no biopsy results yet even though it had been 7-10 business days.  Yes, I know that Memorial Day fell in there.  I get it, but still, I hate waiting. I did request the office to call the pathology lab to be on the safe side (remember when we were waiting for Ellie's karotype results?  Sometimes it pays to be the squeaky wheel).  Anyway, Dr. N assured me that the office would contact the path lab and that he would call me once he has the results.  He has until tomorrow before I contact his office.  Yes, I know that is bugging him but I do not care.  In the medical world, results may hang out at the lab and get lost.  Or they get faxed to the office but get lost in the shuffle and the doctor never sees them.  He has many patients and cannot keep track of everyone so it is up to me, the patient to be my own advocate.  Okay, I am officially off of my soap box.  There you have and there you are.  Nonetheless, I am guessing that no news is good news.  

Drew-Drew-be made it to Germany in one piece.  He is hanging out in Minden for business.  I am slightly jealous.  Well, not jealous of the long plane trip with layovers and then the 3 hour train ride, but I am a bit envious that he gets tasty food, beer, and fun culture.

Time for a nap!




I am a berry happy girl, but I miss my Daddy berry much.



So, um, which one of us is Alpha again?

So as for those blackberry stains. . . I got most of them out.

1. Apply laundry detergent directly to stain
2. Soak garment overnight in cold water with 2 tbsp of white vinegar
3. Apply Spray N Wash or Shout to stain and machine wash on cold.

Friday, June 4, 2010

Sweet Berry Farm

Ellie and I went on a road trip today to Marble Falls, Texas where we went blackberry picking with my buddy Angelika, her two kids, and some of her friends.  We had a great time even though it was super hot.

I had these big photo plans of placing Ellie on the blanket (yes, I know.  She is always on the blanket with her sun bonnet) next to the blackberry box.  Ellie had her own ideas.



This is sort of what I envisioned only Ellie would be smiling at the camera :-)



Ellie is an adventurer.  She may not crawl but she can get around.



You see where this is going.



Berry Smashing!



If they were grapes, we would have wine.







All cleaned up and back into the carrier



This is Angelika with one of her little kiddos.

Now, who knows how to get blackberry stains out of clothing?

Tuesday, June 1, 2010

Bathing Beauty


Believe it or not, I have been working on this entry since last Thursday when Ellie had her ECI therapy.  I am sorry it has taken me to so long to post this.  Here is Ellie's progress since her last therapy session with Jan.

I know what many of you are wondering since it is the question many people have been asking me--nope, she is not crawling yet, but do not despair!  This little cupcake is into everything and is fast.  She has no need to crawl when she can roll and pivot everywhere!

Motor:

Ellie is continuing to get up onto all 4s.  She can stay there for longer periods of time.  She has scooched forward twice, but by accident.  Jan has requested that we place the boppy pillow under her tummy to help support her in the all 4s position.  A really exciting toy is to be placed near her hands but just out of reach so that she must "crawl" over the pillow.  We would like to thank Aunt Michele & Uncle Tom for the toy that has a steering wheel--Ellie loves it as does Amelie *^^*

She still continues to perform Superman and her side-lying had greatly improved.  The side-lying, aka "Bathing Beauty" pose (think like Sports Illustrated Swimsuit Edition pose) enables Ellie to pivot to get to different toys.  Jan showed me ways to place pressure on her top thigh and a slight pressure on her arm to help her move into sit.  Yeah, uh that doesn't work in case you are wondering.  She fights it and back arches and then plops onto her tummy.   So now I am trying my own techniques.  Sometimes they work and sometimes they do not.

While in the standing, we are now holding Ellie near her hips rather than under her arms so that she must use more of her own core muscle strength to keep herself standing.

Baby Bootcamp:

Crunches.  Yes, you read correctly.  I am helping Ellie do crunches.  My leg rests over her feet and I let Ellie grab onto my fingers.  She is to pull herself halfway up to a sit.  She is to hold it.  Repeat.  Repeat some more.  It is no longer the number of pull-to-sits, but rather the duration.

Pushups.  Just kidding.  We are not doing that. . .yet.

Language:
Still signing.  Sort of.  I am signing most tasks and objects. We have actually gone backwards.  We worked so hard to sign "eat", but she was signing it more like "mom".  Andrew and I could care less that it was not the correct ASL sign for "eat", but Jan had us try to correct her.  Now Ellie thinks "eat" is trying to escape from her highchair and leap over the tray to grab the food.  Or she grabs my hands and bangs them against the tray.

Nonetheless Ellie is continuing to amaze us with her zany personality and her many abilities. We are so proud of the little Ellie Bellie Bear-Bear Chunky Chicken Boom-Boom.



Superman Pose (while blowing a razz)


Upward Dog

Bathing Beauty