Wednesday, March 31, 2010

Little Miss Messy

Since the dreaded "Cereal-Incident", I am afraid to start any new food with Ellie.  Given that her reaction to the infant oatmeal was so severe, I am actually paranoid.  Since the ER visit, I have decided to carry Benadryl with me everywhere.  That way, if she does have a reaction, I can give her the benadryl and have it kick in before her throat swells shut.  Granted, she might not have another food allergy.  Or, if she does, it might be something like a rash or tummy upset.  Still, I am petrified.

I have been bad and started with fruits first.  Now there are 2 schools of thought.  One is that it doesn't matter which comes first--fruits vs. veggies.  The other is that veggies should come first because otherwise babies "develop a taste for sweets" and will not eat the veggies.  That last one is the older school of thought.

One of the reasons I started with fruit is because of constipation.  Yes, you heard me.  Children with DS have low tone everywhere and that includes the gut.  Low tone in the gut means impaired movement of waste through the intestines thus resulting in constipation.  Common treatments for constipation in infants are diluted prune juice and apple juice.  Ellie has had both of these juices without reactions so I figured that prunes and apples would unlikely instigate an allergic response.  We have since moved on to carrots.  She loves carrots.  This morning I gave her cereal with apples and she would not eat it until I added the carrots.  Picky Picky.


Look Mom!  I can hold my own spoon.



Yummy Yummy I have carrots in my tummy (and everywhere else).



All done now.


Remember my lovely picture showing Ellie holding her own sippy cup?  Well, apparently that was bad.  The developmental therapist informed me that sippy cups are not good and that she should learn to drink through a straw in order to maintain good oral-motor function.  After running to a few stores, I was finally able to find a cup with a straw and handles--Nuby Brand.  We have not tried it out yet.

Oh and does anyone know how to get carrots out of clothing?

Tuesday, March 30, 2010

Sisters-In-Law

I have great sisters-in-law.  Whenever they come across something inspirational, they share it with me and Andrew.  Their thoughtfulness is touching and appreciated.


The following link is courtesy of Michele.  It is a blog entry by SimplyModernMom.com that has information from a woman by the name of Stephanie, another mother who has a son with Down Syndrome.  When you get a chance, please read her short entry for I do not think I could have worded it better myself.




http://tinyurl.com/yhypr9n




This next link is from Josel.  Lisa Smith is an inspirational woman with Down Syndrome who signs the lyrics of Christian artists' songs such as Sandi Patty.  Lisa Smith will be releasing a DVD in the near future.


http://www.lisasmithsigns.com/



No your eyes do not deceive you, there is a cat sneaking into the photo.




There must be M&Ms in this basket.  I will find them.  I will. I will.



Maybe I need to dig a little deeper.




Must get Easter egg.  So shiny.  So pretty.





Monday, March 29, 2010

Ellie Bunny

Yesterday I went a little nuts with the camera.  Ellie had a "photo shoot" complete with 3 different Easter dresses.  With some prodding and lots of funny noises & faces, Awa Grandma and I were able to get Ellie to smile in some of the photos.

Today's blog post features Ellie wearing a frilly white dress with pink stuff on it (clearly fashion is not my area of expertise)



Sunday, March 28, 2010

Fun with Grandma




In nursing school I was required to take all of these classes that involve child development, Freud, and Paget and whatnot.  Developmentally, an infant is to form a strong bond in the 1st few months of life with Mommy.  Around 6 months of age or so, the infant will begin to have separation anxiety.  This is both normal and frustrating.  On one hand it shows that you did your job as a parent in developing that strong bond.  On the other hand, it means that your little darling can be very unhappy when you are not around.

My mother aka Awa Grandma has been visiting from St. Louis.  Apparently, Grandma is a stranger.  Ellie would just stare and stare with her mouth gaping open.  She would then look for either me or Andrew and then look back at Awa Grandma.  After being here for a few days, Ellie now considers Awa Grandma "familiar".  

Children are like sponges.  Even though Ellie cannot talk yet, I am very curious to know just what is going on in her little head.  Some things amaze me.  For instance, my mother was holding Ellie and she asked "where's mama?".  Ellie started to look for me and then we locked gazes.  Then I was bad and asked "Where's Daddy?" (he was not in the room) and she started to look around for Andrew.  So see, even though the Bear cannot say "Mama" or "Dada" yet, she does understand who we are.  It will be interesting to see if Ellie Bellie looks for Awa Grandma after she returns home to the Show-Me State.

Saturday, March 27, 2010

Cotton

...That is the gift to bestow on your honey once you have been married for two years.  Granted, it has not quite been 2 years for us (4.12), but we had a babysitter this weekend--my Mom :-)

Now Andrew got me this very lovely gift from Victoria's Secret. . .Get your head out of the gutter!  He got me super soft jammies made from cotton!  All I gave him were some towels with a "T" monogrammed on them.

Ellie Bear,  Sophie, Amelie, and Tama got to spend a fun-filled weekend with my Mom.  Fortunately, most of them behaved without the presence of their parents.


Our Honeymoon--Mittenwald, Germany aka The Alps 4.2008

Andrew and I drove to Fredricksburg, TX on Friday afternoon and stayed the night at a Bed & Breakfast on Main Street.  Some of you may be wondering why we chose such a random town.  Andrew and I spent our honeymoon in Germany and Fredricksburg is a German-Texas town.  It has authentic German food, but people are wearing cowboy hats and boots.


Der Lindenbaum Restaurant in Fredricksburg, TX

In May of 1846, a group of 120 German Settlers from New Braunfel's, Texas arrived at what is today known as Fredricksburg.  It was not until after 1900 that some of the settlers spoke fluent English.  Today, you will not find anyone speaking German, but you will find many stores & restaurants with "Willkommen" on their signs.  Main Street has multiple boutique shops in old buildings from the 1800's.  There are antique stores, quilt stores, beer gardens, and of course leather & cowboy outfitters.  Even though no one knew what Flitterwochen (honeymoon) meant of how to pronounce our last name, we had a fabulous, relaxing time.



Andrew would not let me adopt the kitty.


This looks more Texan than German, but the building is considered historic.



We ate breakfast in the basement of the old hospital.

Do not fret, there will be more Ellie pictures and updates soon!

Monday, March 22, 2010

Some Bunny Loves You

Happy Spring Everyone!


There mom goes again.  Making me wear these stupid ears.  I look like a dork.  I am not here for her personal entertainment.

Friday, March 19, 2010

Oat vs. Wheat: A Tour of the ER


Ingredients
OAT FLOUR, TRI– AND DICALCIUM PHOSPHATE,SOY OIL-LECITHIN, MIXED TOCOPHEROLS (TO PRESERVE FRESHNESS), ELECTROLYTIC IRON, ZINC SULFATE, ALPHA TOCOPHERYL ACETATE (VITAMIN E), NIACINAMIDE (A B VITAMIN), PYRIDOXINE HYDROCHLORIDE (VITAMIN B6), RIBOFLAVIN (VITAMIN B2), THIAMIN MONONITRATE (VITAMIN B1), FOLIC ACID (A B VITAMIN),VITAMIN B12 (CYANOCOBALAMIN)



Please note that oat flour does contain oat-gluten and it is often made in the same processing centers as wheat-gluten.  Therefore when you read the actual box, it says "contains some wheat".


With the exception of Friday, everyday this week had a scheduled medical event.  Ellie had surgery, vaccines, and blood drawn this week.  She still has the marks of two venous blood draws and 2 combination vaccines.  My daughter is a trooper.  All week I have been eagerly anticipating the arrival of Friday--Pajama day.  A day of no schedule, lots of fun, and hopefully naps. . .




We spent half of the afternoon in the ER on Friday.

Let's start at the beginning.

Ellie Bear has been loving her rice cereal for over a week now and yesterday I thought it was time to start something new.  Oatmeal!  She loved it, but was super cranky all day yesterday.  I figured it was from the vaccines because she is usually cranky afterwards.  Looking back on it, I may have been wrong.  Today the Bear had oatmeal at lunch and some formula.  This is Gerber iron-fortified infant single-grain oatmeal that does contain traces of wheat. Apparently, most infant oatmeal cereals contain some wheat. Within 20 minutes of eating, Ellie had hives on her neck and chin with a rash spreading down her trunk.

Cue maternal panic. Followed by thoughts of being overly paranoid over a rash and then a repeat of panic that you might have just started an anaphylactic reaction in child.  Is she breathing?  Yup, she is blowing raspberries.  Are her lips swollen?  Nope.  Okay, we are not in distress.

I think, antihistamine!  

Uh, where is my pediatric dosage drug book?

I call the pediatrician's office to get the milligram dosage for benadryl for a 6.9kg baby and got chewed out by the nurse for not having the liquid form on hand.  First, she is wasting valuable time with her lecture & she is pissing me off.  Second, children's benadryl is for children over the age of 2 and Ellie is 6 months, hence why I do not own it.  Third, I DO have the pill form in which I can crush and make into a suspension liquid-form like I used to do in the PICU.  I told the nurse that her lecture was really not helping my daughter at the minute and if she could just tell me the dosage.  The nurse disagreed with me and said to drive to the nearest Walgreens and buy children's benadryl.  She said to give a 1/2 tsp.  She never told me how many milligrams.  I now know after buying benadryl and an oral syringe that 1/2 tsp = 6.25mg.  Oh and the bottle of benadryl includes a medicine cup only and lists the dosage for 2+years.

Let me back up just a bit for I would like to point out that my neighbors are getting a new driveway.  Yesterday I was trapped at the house because the construction crew had their trucks parked in the middle of the road and a large collection of chicken-wire was in the front portion of MY driveway.  This morning I was smart enough to park at my neighbor's house seeing as the front end of the cement truck was in both my yard and driveway.  Unbeknownst to me, Max returned from his trip and parked behind my truck seeing as it was his driveway I was poaching on.  I come out the side door running across his lawn with a baby carrier and Sophie barking from the backyard.  He probably thought I was in crazy mode.  Anyway, he moved his truck  (yes, this is Texas, we all have trucks) out of the way and off Ellie and I went to CVS.  Now wouldn't you know that I hit every single light and one of them I had to sit through twice.  Being a paranoid parent and concerned that Ellie would develop respiratory distress, I got out of the truck to peek in on Ellie in the back seat while stopped in traffic.  Real safe, I know. Also, Megan, I really need to install that mirror.

The benadryl made Ellie drowsy and did eliminate the hives, but the rash started to spread down the trunk and up into her hair line.  She sounded raspy-hoarse.  Like croup.  Like tracheal swelling.  So I grabbed my neighbor Pat and we high tail it to the ER.  This is after leaving in Max's driveway a stroller, two towels, a lumbar support pillow, and multiple pieces of PVC piping so that Pat could fit into the car.

By the time we got to the ER, Ellie's lower lip was swollen and she was becoming Miss Cranky Pants.  Fortunately, she was still not in respiratory distress, her lungs sounded pretty good, and her oxygen saturation was at 98%.  The raspy cry was the result of allergen-induced irritation of vocal cords and trachea.  Ellie received yet another shot this week--a steroid shot.  She cried uncontrollably for the 2.5 hours we were there except for during her breathing treatment.  She tried to eat the tube that was blowing racemic epinephrine for her to inhale.  That part was rather humorous.  Leave it to my kid to try and eat an inhaled medication.  She then blew a big raspberry at the respiratory therapist.

The Bear is doing much better now.  She sounds normal.  The hives are still gone and now the rash is gone. What is left?  The horrible side effects of these meds--fatigue and a fast heart rate.  Ellie is now a very irritable, fatigued little girl with a racing heart that feels funny.  And I thought surgery would be the big stressor this week. . .

Until a much later date, we are avoiding oat and wheat products.

So let's see so far this week we have been to a hospital OR, a doctor's office, a chiropractor's office (that was me), and an ER.   I guess Urgent Care is the only one left---okay I should not joke.  Knock on wood that we all stay healthy and happy for a while.

Wednesday, March 17, 2010

Lucky Charms



The little Bear had quite an adventurous morning.  I would like to point out that I am traumatized.  I also would like to repeat what I have said many times before--all babies should be born with IVs or PICC Lines.  Let me repeat that again. All babies should be born with IVs.

Today was Ellie's 6-month Well-Child-Check.  She did fabulous!

Weight: 15 lb 1 oz = 90% on DS chart
Height: 25 inches =  90% on DS chart

Yes, my little Ellie is a chunky monkey :o)

Everything looks good on the physical exam and developmentally she is doing great.  Dr. Nichols stated that Ellie is doing more than many of her 6 month-old patients. . .even those without DS.  She further went on to say that her own children were not as advanced at 6 months.  Super Ellie!  She credits most of this to Andrew and me working very hard with Ellie.  I would like to credit Ellie.  She is determined.

Today was much harder for us than yesterday.  True I was freaking out yesterday about the surgery and the anesthesia, but today I had to do something no mother should have to do--restrain her baby while someone pokes her with needles.  Ellie Bear needed blood drawn for a thyroid panel.  This is a routine test for children with Down Syndrome since they are at high risk for hypothyroidism.  She will have her thyroid checked yearly from now on.  There were only 2 nurses in the entire clinic today that could draw blood from a chunky baby.  All of the others were on spring break.  One nurse held Ellie's arm while the other felt for the vein and drew the blood.  Ellie is a shaker and a mover so I had to hold her body and other arm down to prevent her from rolling over to escape the tourniquet .  It took 2 tries to get the blood (her vein collapsed on the left and the second time it kept rolling).  We are hoping that we got enough blood for the lab.  Ellie was screaming and screaming and looking at me right in the eyes saying "Mommy, why are you letting this happen?"  It was horrible and I never want to do this again.  At the next well check blood will be drawn for CBC and transglutaminase IgA (celiac screen).  Goody.

Tuesday, March 16, 2010

Happy 6 Months!

I will write more later...

Happy 6 Months to Ellie!  To celebrate Dr. Zapata gave her bilateral titanium ear tubes and removed all of the wax from both sides.  Ellie was a superstar and can now hear out of the right ear.  The left ear, the really narrow one, is still iffy.

Tomorrow 6 month well-child-check with vaccines and a blood draw for thyroid panel.

Thank you for all of your prayers and thoughts!

-Anna & Andrew

Monday, March 15, 2010

Plop! Splat! Puddle



You know those water rides at amusement parks such as Six Flags?  You know the ones where you if you stand in one place or sit in a specific seat  you get soaked?  Or at Sea World where if you sit in a certain part of the audience you are guaranteed to get wet?  Well, that is what feeding Ellie is like.  The Bear is doing very well eating her cereal.  She makes these funny faces & then smiles so big.  She grabs the spoon and puts it correctly into her mouth.  Of course she then decides to chew on the spoon rather than allowing me to reload the spoon with cereal.  Anyway, she likes to blow raspberries.  She likes to do them especially after eating a huge spoonful of rice cereal.  Even though I try to jump to the side as she starts to spray goopy rice all over the place, I still manage to get it on my glasses, shirt, and on occasion, pants.  It seems that I need as many clothing changes as Ellie :-)

Oh and Ellie is trying to drink from a sippy cup :-)



ENT surgery is tomorrow bright and early.  Ellie is first case.

Sunday, March 14, 2010

Spring is in the air

Happy Spring!



I guess I need to teach her that ladies do not lift up their dresses.

I have a love-hate relationship with Daylight Savings Time. First off, I do not enjoy losing an hour of sleep.   Of course Ellie does not know about the time change so it doesn't really matter.  Still, I hate losing an hour of sleep.  However, Daylight Savings Time means that Spring is just around the corner.  In Austin-speak, that means for the next 1-2 months we will have high 70s to low 80 degree weather.  (After that think triple digits).  There will be baby bunnies and blue bonnets.

The princess puppy paw paws has been enjoying tons of frisbee time. Ellie and I have been going on lovely walks around the neighborhood and at Brushy Creek Park.  That means no more mall walking!  It also means that our anniversary is coming up--2 years!  I am taking suggestions for an anniversary gift for Andrew.

Thursday, March 11, 2010

The Story of Ellie Bear and the 3 Animals

Once upon a time,there was a beautiful little baby by the name of Ellie.  She was a very happy baby and loved to smile, play, and babble loudly.  There were also 3 animals--a "sensitive" and sometimes evil black cat, a spunky torti kitty, and a hyperactive border collie with identity confusion (she thinks she is a cat).

One morning the little Princess Ellie Bear went to have some morning exercise in her play-yard.   Ellie discovered that someone had been sleeping in her play-yard, but she had left because it was too soft.



Princess Ellie then went to her bouncy chair to "talk" to her Safari toys.  She realized that some animals (yes, plural--Tama jumped out before I could get the picture) had been sleeping in her chair, but they left because it was too bouncy.



Little Ellie Bear realized that she was starving so she decided to have breakfast in her newly-assembled-as-of-last-night high chair.  Wait a minute!  Someone has been sleeping in my high chair.



Very much annoyed, the beautiful little baby asked her mommy to take her on a walk.  Then she saw that someone had slept in her stroller!  (I accidentally deleted the photo of Tama in the stroller).

The Princess Ellie became very upset and thought that she could find some peace on the guest bed (with her Mommy's supervision of course.)  There, the Ellie Bear and her mommy discovered that two somebodies were sleeping in the bed.  It must have been just right because there they are!  



Ellie's mommy exclaimed "That's it!  You guys are going to the animal shelter!"

Mommy, all frazzled, placed the Ellie Bear Princess in her crib and listened to her wail for 15 minutes before she fell into a deep slumber (okay, not so deep).



Mommy Anna thinks that she needs a nap and wants to be Queen for a day.


The End.

Tuesday, March 9, 2010

Nom Nom Yum?

Baby between the age of 4-6 months.  Check


Baby has good head control.  Check


Baby can sit with minimal support.  Check


Baby has lost tongue thrust reflex. Check


Baby is interested in table food.  Uh Does talking to the brightly colored coffee mug count?




What is this goop they are giving me?


I have my hands together--praying that I get something a little more tasty.


What is with this bib?  They must think I am messy.  I am not.  I eat like a lady.



What? No one said that I have to eat with my mouth closed.




Monday, March 8, 2010

Hear Ye Hear Ye





We as mothers tend to be paranoid when it comes to our children. It is good to be paranoid. I had this huge fear that Ellie wasn't hearing as well as she was earlier in life. I felt like I have been talking more loudly to get her attention. Of course, I talk a lot and loudly in general so I just chalked it up to her being distracted by all of the new, fun, and exciting things in her world.
My daughter babbles. A lot. Loudly. Many people would think 'oh she hears fine if she is making noises'. Makes sense to me.

Ellie has also been very cranky over the past few weeks. It is like being revisited by the newborn period. "Crying-it-out" is not working. (see, I do practice what I preach) Teething remedies are not working. Still, I chalked up the disruptive sleep to teething and to her increased mobility.  Oh and I reread the entire Healthy Sleep Habits, Happy Child by Dr. Marc Weissbluth.

Still being paranoid with a slight niggling sensation in the back of my head, I decided to moved up Ellie's ENT appointment. Ellie had cerumen impaction on both sides. I mean there was so much wax in her right ear that I could have make a candle out of it. Believe me, I have seen a lot of ear wax in my life. Dr. Z still couldn't see Ellie's left ear drum due to the narrow ear canal. Behind the right ear drum was tons of mucoid fluid. Yuck! Right mucoid otitis media. Uck! Try to hear voices through a narrow ear canal, a wax factory, and mucus. So I guess Ellie wasn't ignoring Mommy and Daddy after all (give it 13 or so more years).


Normal Ear Drum: Note the pearly gray color of the tympanic membrane and see the positioning of the ossicles (the tiny bones).  Beautiful.


Mucoid Otitis Media
Oto = ear; itis = inflammation therefore Otitis = ear inflammation
Media =  Middle
Middle Ear Inflammation with mucus
See the bulging ear drum with surrounding redness.  Notice how you cannot see the ossicles through the ear drum.  This ear drum would not move properly or conduct sound properly.

At my old job I spent hours providing pre-& post- operative teaching for kiddos with ear, nose, and throat issues. Yet today I found myself being the recipient. It felt surreal and bizarre.

So the Bear will get tiny titanium ear tubes placed into her ear drums in about 2 weeks. These ear tubes will allow mucus and other fluid to pass out of the middle ear, thru the tube, and out the ear canal. She will probably need these for a while, but given the size of her inner ear, smaller tubes will be used. These smaller tubes tend to fall out much earlier than other types of tubes. I guess that means more frequent surgery. While this is a simple 10 minute procedure, Ellie will have her operation at the Dell Children's Hospital rather than in the day surgery center. She should still get to go home the same day but she needs to be at the hospital due to the hole in her heart and her low tone. These things place her at higher risk for complications.


 Ear Drum with Pressure Equalizing Tube aka ear tube or PET
Ellie's will actually be titanium, but I could not find a picture.


My little Bear is a trooper and I am sure that she will do wonderfully. I am still nervous though.

Photos courtesy of http://www.earanatomy.com and http://www.emedicine.medscape.com and http://www.faculty.washington.edu

Sunday, March 7, 2010

A Day In the Sun

This is for those of you who are not on Facebook.

These were taken a few days ago. We had gorgeous weather so we went on a nice walk. Ellie has a thing for hats as you can see :-)






Thursday, March 4, 2010

The Tooth Fairy


I have been a bit fussy lately and I enjoy waking up at 5am. The sun is up and it is time to eat and play. Mommy says it is driving her nuts. What nuts? Like peanuts or walnuts? I just do not know because mommy doesn't let me have nuts. Ellie doesn't understand these things.

Mommy and Daddy keep talking about teeth. Mommy says that all babies should be born with permanent IVs and teeth. They keep giving me these cold toys and wet washcloths. I do not know why they think I am getting teeth. I haven't purchased any and the tooth fairy didn't visit me. So what if I grab mommy's or grandma's hand and chew, I mean bite. Tastes like Polvo's. I do not know where they get these ideas from.






The Significance of March 21


March 21st has always been an important day.

It is the day that my perfect little world changed and brought forth... a brother. Oh the shame of not having the constant, undivided attention of mom and dad. My brother, Matt, came into my life on March 21st. While that day brought forth a huge change, it brought a great person. Matt is one of my best friends and we are very close after 20-some-odd years together. Plus, Ellie got her eye color from Uncle Matt.

March 21st is often the first day of Spring. It is a time for new beginnings--flowers blooming, animals awakening from hibernation, and occasionally Easter.

Finally, in 2006, March 21st was declared "World Down Syndrome Day". This date was chosen by Down Syndrome International due to the significance of 3-21. As in trisomy 21.

Since 2006, the entire month of March (actually it is more like the 3rd-21st) is used by many DS societies worldwide to organize activities & events to bring about increased awareness of Down Syndrome. So my fellow friends & family use March to educate others about DS & to recognize how special & blessed you are to have a child, aunt, uncle, friend, &/or niece with DS in your lives.


Tuesday, March 2, 2010

3 Second Video of Ellie

video

Come on! Everyone has 3 seconds to spare :-)
This was recorded last night. She is doing her "Abu" Raspberry.



Monday, March 1, 2010

Abu Raspberry

I like fashion.  Beautiful onsies, stylish overalls, soft PJs, coordinating socks and of course my pink hat with the flower.  I like to change clothes at least 3 times a day.  I do this by blowing raspberries repeatedly and by doing so while drinking.  This ensures that  milk sprays everywhere, including on Mommy.  
Grandma Dunja and Papa Charles were visiting me this weekend.  I love Grandma Dunja and Papa Charles.  They talk and play with me and they brought me this funny, color, dancy elephant that plays “Twinkle Twinkly Little Star”. Grandma likes to do “airplane”.  That is fun.  I love to say “Abu” and then blow a raspberry.  I repeat it in increments of 10. Such fun.
Mommy says that I weigh a ton so she and Grandma Dunja went out to buy me some more PJs.  Daddy says that they need to be footie pajamas because I take my socks off.  What is wrong with bare feet?  I have some pretty stylish shoes.  
Mommy and Daddy have been calling me Miss Cranky Pants.  Something about teething.  I guess it is because I almost bit Grandma Dunja’s thumb off.  My name is Ellie Bellie Bear and not Miss Cranky Pants.  I do not know this Miss Cranky Pants.
I also got a Vermont Bear from Awa Grandma and Grandpa Bruns.  Apparently this bear can be eaten by Sophie and the Vermont Teddy Company will put the Vermont Bear in the hospital and make him better.  I do not think I want Sophie to eat my bear.
Well, it is time for my fashion show.
-Ellie