Monday, May 24, 2010

Odontogenic Tumor

I am usually very diligent about going to the dentist--every 6 months.  I brush my teeth at least twice a day.  I use mouthwash with each brushing.  I am not the best flosser, but I do floss at least once a week.  I replace the toothbrushes every 3-4 months and after infections.  I take care of my teeth.  I never had a cavity until I became pregnant with Ellie.  Twenty-eight years with no cavities!  Last year I missed my dental x-rays because I was pregnant with Ellie.  Then I missed my 6 month appointment at the end of December due to a change in insurance.  So in April, I finally got around to it.  Yes, I was 4 months late on the exam and cleaning.

Everyone, please please please see your dentist for the regular cleanings and X-rays.  I know the dentist is scary for many people, but please read on. . .

On April 23rd I saw my brand new dentist under my new dental plan, Cigna DHMO.  He is fabulous, kind, and thorough.  I knew going into this I would need at least one filling.  The filling that I did not get because I was pregnant.  As it turns out, I also bought myself a root canal on my very front upper tooth.  I had some trauma to the tooth back when I was 15 or 16 and the tooth finally died.  Okay so that was not happy news.   I then learned that there was a suspicious spot on the left lower area of my xray near tooth #22 aka the canine/cuspid.  This area looked like a textbook abscess of radiolucency.  The kicker: I never injured the tooth, I never had treatment to the tooth, and I had absolutely no symptoms.  That bought me a referral to an oral surgeon.  Great prefect teeth to: 1. filling; 2. endodontist for root canal to dead tooth; 3. oral surgeon for possible abscess.  Fabulous.

After two visits to the endodontist, my front upper tooth experienced a root canal.  It is slightly darker than the neighboring teeth, but it is not overly obvious.   I requested that she look at #22 and she too thought abscess.  She ran some basic tests and ruled it out.  It was not an abscess to her surprise so she advised me to keep my oral surgeon appointment.  Another visit to the dentist last week and I have a beautiful filling in my back molar.  Hurray.

Moving on to the oral surgeon. . .there is only one (1) oral surgeon in my Cigna DHMO plan.  A very nice Dr. K.  He looks at my X-ray and thinks abscess.  (Are you guys noticing a theme?)  No symptoms, trauma, or previous dental work so he thinks cyst.  He is not worried and advises a "watch-&-wait approach".  As he prepares to walk out the door, he decides to order a CT scan of the maxillary-facial bones with a focus on the mandible (jaw).

I get the CT Scan and follow-up with Dr. K last Thursday.

To his surprise, it is a solid mass affecting tooth # 22 (left lower canine) and it has scalloped the mandible.  Apparently, that means I have a tumor in my jaw that is disrupting the structure of my mandible and is quite possibly adhered to my tooth.  If left alone it will continue to growth and affect the other teeth and the mandible.  Dr K is shocked. My dentist is shocked.  I am not happy.  Apparently, this is not very common, especially among people who have their permanent tooth.

Dr. K's plan is to perform surgery under general anesthesia at the hospital.  He would remove the odontogenic tumor and some of the surrounding bone, send it to pathology, and then use bone grafting in my jaw.  I would most likely lose the tooth so I would need a temporary prosthesis and eventually an implant.  At this point, my mass is now bone-related rather than tooth-related so my visit went from dental insurance to medical insurance.  Dr. K does not accept my medical insurance and I had to pay for  this visit out-of-pocket.  That is another story all together and I shall spare you the details.

Most of the literature that I was able to find was not for non-medical people.  It was all medical jargon from case studies and fancy surgical journals and I only understood part of it.  It seems that  "odontogenic tumor" is a loose term for many different masses that are associated with the teeth, but are actually in either the mandible or maxillary bones.  Complete excision of the growth is necessary as they tend to grow--some more aggressively than others.  Some also have high occurrence rates and some in rare cases can become malignant.  So it seemed that Dr. K's plan was on par with what most of the literature stated.

That brings me to today.  I found Dr. N who is only one of 2 oralmaxillaryfacial surgeons in my medical plan.  He has a brusque, no nonsense type of manner that reminds me of one of my old ENT colleagues.  Believe it or not, this is a good things.  Those with the poor bedside manner make the best surgeons.  Dr. N looks at my mouth, asks some questions, briefly reviews the CT scan and report, and studies the Xray.  He too thinks cyst (again, notice a theme?) but he says "odontogenic tumors and cysts are very broad terms for something that is in the jaw".  He said that he would prefer to biopsy the mass first and then after getting the pathology report go from there.  It is more of a conservative approach.  He also noticed on my X-ray in addition to the tumor, two other suspicious areas along my lower very front teeth. Goody, more masses.

So today my poor mouth got sliced & diced.  I was not prepared for this.  I ate breakfast.  I arrived to the office by myself.  I had plans for the rest of the day. . . so  I call my beloved husband to come and be my ride home for I needed to undergo IV sedation.  Andrew, with Ellie in tow, comes to my rescue.  IV sedation is rather interesting.  I am wide awake one minute talking to the assistant about versed and propofol and the next I am awake with blurred vision and slurred speech.  I am almost certain that I tried to grab my specimen off of the table.  In fact, it wouldn't surprise me if I tried multiple times to get a glimpse of what came out of my jaw.  How embarrassing.  I do remember asking about Ellie multiple times and asking the assistant if my husband still "looked hot".  Yep, that is me alright and yes, my husband is still smokin' hot.

Dr. N cut along my lower gum line from the right cuspid to my left molar.  The lower lip was pulled way down the gums were slid up to reveal the bone.  Ouch!  I have many stitches and a big swollen lower lip.  I am thinking that the Angelina Jolie look is really not for me.  I have a huge pressure bandage on my chin and extending upwards to the corners of my mouth.  That will come off in 2- 3 days.  The pain--it is worse than childbirth.  The pain meds and ice packs help somewhat.  Actually, I think the pain meds are keeping me awake.  I feel loopy as I type this, but I am wired.  Ellie Bear will wake up nice and early in the morning and here I am typing a late night blog post.  The worst thing is that I have trouble talking!  Okay just kidding!  I imagine that my honey-bear is enjoying the silence in the house.

Dr. N talked to Andrew and me after the surgery but I was pretty out of it. Fortunately Andrew was there and the Dr. N called this evening to check in.  Here is what I know:

1. There were two small, fluid-filled cysts in the mandible on the very front (think your 4 front lower teeth).  The fluid drained easily and has been sent to pathology)
2. Bone-like material was removed from larger lesion on the left lower jaw (canine/cuspid) and sent to pathology.
3. The "tumor" was actually a hollowed out cavity in the mandible.  Dr. N is hopeful that the cavity will close itself back up.  My fear is that I will have an avulsed tooth instead and need bone grafting.

It is a relief that Dr. N took a more conservative approach.  If I went with jovial Dr. K, I would have been under general anesthesia and loosing a chunk of my jaw along with my tooth.  I would also be out a lot of money since he does not take my insurance.  Of course I require close of monitoring.  I might still lose the tooth or require a root canal.  Dr. N might need to perform more surgery in which I lose more bone and need grafting.  At this point, I am leaving it all up to God. It isn't over yet!

Thank you everyone for your prayers and support.  This has all been really stressful and scary.

Thank you Andrew for being my rock.  For carrying for both me and Ellie when you have so much work right now.  Thank you for the jello and the fabulous iced mocha.  I love you very much and I am so grateful to have you as my husband.

BTW: I would love to give you guys some fun photos but that will need to wait until I know what type of tumor I had and once I have had more sleep.

Saturday, May 22, 2010

Jump-A-Roo Ellie

I do not have anything new to report.  Ellie is still as determined as ever to get whatever toy she wants.  She gets on all 4 and rocks.  She does the superman.  She swims.  She then goes into upward dog and yells.  When none of that gets her to the toy, she screams.  She is great at rolling and pivoting to get whatever she wants.  She loves trying to master these new motor skills.  So much so that she delays going to bed.  I often see her on the monitor practicing her moves when she is supposed to be sleeping.

We have started using the Johnny Jump Up.  She likes it although she hasn't quite figured out that she is supposed to jump in it.  Instead she twirls around and tries to get close to me or watch the puppy in the other room.

Wednesday, May 19, 2010

What Would You Do?

Tonight on ABC there is special edition called "What Would You Do? " involving hidden cameras that capture everyday scenarios & people's reactions.

Scenarios include:

  • Witnessing pilots drinking prior to boarding their plane
  • NDSS Sponsored: client poking fun & being rude to a grocery bagger with Down Syndrome 
  • Waiter verbally passing judgement on a lesbian couple with kids
  • Bridezilla

The second bullet point is of particular interest to me.  I know that I cannot stop it from happening, but I know that at some point Ellie will be teased or called hurtful things due to DS.  If this show, if my blog, and if any of you continue to spread DS awareness to even one person just imagine the how much better the world will be for those with special needs, or for those who take care of someone with special needs, or even for those of you who know of someone with special needs.

Reminder: Down Syndrome Awareness Buddy Walk for Central Texas is October 24, 2010
Join our family in walking the 1 mile walk in Georgetown, TX or sponsor Ellie-Bear!--More information to come.....

Here is the brochure from last year's walk.

For those of you who live in different cities and want to participate click the link below. 

Now look at that pretty sit!

Friday, May 14, 2010

Happy Almost 8 Months Ellie!

Can you believe that it has been nearly 8 months since our little angel entered the world?  I cannot believe how big she is or just how engaging her spit-fire personality is!  Even more impressive is the progress Ellie has been making in spite of all of the predictions that kids with DS will do x,y,z at much later ages.
While that may be so, Ellie seems to be progressing leaps and bounds on a daily basis.  Each day Ellie has accomplished some new task or is doing something for longer periods of time.
On Tuesday Ellie had her ECI therapy.  As usual, Jan tells me that Ellie is looking great.  She seems to think that Ellie is in a race to be a “super baby”.
Gross Motor:
Tummy Time: Ellie is lifting up to almost a 90 degree angle when on her tummy.  She is able to pivot in 360 degrees to get to toys.  She does sort of a side-lying position to get around (think of the side-lying-plank for all of you yoga people out there).  She is getting onto all fours and doing the butt rock for longer periods.  She just added Superman to her repitoire--arms and legs extended.  It is sort of funny because she sees a toy, mimis swimming, then butt rocks, and then supermans.  After none of those get her to the toy she goes into a full updog and screams in frustration.
Sitting: We have some improvement in this department.  She will tripod sit for a few seconds longer provided Sophie is in the room for her to watch.  She does well in the Bumbo for about 5 minutes when we pad her in the front.  Ellie still sits in the IKEA bin and loves it.  Jan would like Ellie to start doing a side-sit so that she may play without toppling.  That is much easier said than done.  Ellie hates it and arches and arches and arches.  Did I mention that she arches?  The side-sit is very similar to the tripod pose and while I would love to show you a picture, my little Bear is not cooperating.  We are still not sitting in a restaurant high chair or in a grocery cart even with front padding.  She still topples sideways.  I have recently repositioned her high chair fromt he reclined to the full sit.
Standing: Anyone who has met Ellie knows that she loves to stand.  Bear-Bear has strong legs.  They may be the strongest part of her body.  Jan would like us to start holding her lower on the body, closer to the hips so that Ellie must use more of her core muscles to keep her upright.  Ellie is such a strong girl.  In front of Jan, babycakes bent forward at the waist, picked up a toy, and then returned to her stand--all while I supported her at the hips!
Speech & Fine Motor:
Sign Language:  Jan does not like that Ellie is actually using the ASL sign for "mom" to communicate "eat".  She wants me to fix her hand to the appropriate sign.  Well, Phooey!  The whole point behind teaching her signs is to give her the power to communicate with us since children with DS are late talkers.  If she signs "mom" for eat, I know she wants to eat.  Isn't that communicating?  Besides, I can teach her a different work for "mom".  So now meals = battle time.

Fisher Price Aquarium = Infant Television

Tuesday, May 11, 2010

"A Special Kind of Love & Devotion"

This is for all of the people who care for or work with children who have special needs.

Grace is spelled M-O-M: A Tribute to Moms of Special Needs Kids by Ana Veciana-Suarez

Miami Herald Special Interest Piece

Will write more later this week on Ellie's ECI appt.

Monday, May 10, 2010

Happy Belated Mother's Day!

I love my Drew-Drew.  My only Drew-Drew.  I love my Ellie Bear.  My only Ellie Bear.

Last year at this time I was pregnant with Ellie.  In my personal opinion, last year was actually my first mother's day seeing as there was a live kicking baby girl fetus hanging out in my uterus.

All of that being said, yesterday we celebrated my first Mother's Day :-)
Andrew, Ellie Bellie, and I met up with a couple and their two sweetie-pie kiddos at Chez Zee.  I love Chez Zee and we do not go there often so it was a special treat.  They are known for their Creme Brulee French Toast.  I dream of this toast--the scent, the taste, the texture.  YUM.  Actually, it isn't really like toast at all.  It is a thick wedge of dense bread that is sort of like creme brulee and is drizzled with caramel-honey and topped with a couple of strawberry slices.  It is a carb-lover's dream and a diabetic's worst nightmare.  I devoured all of mine :-)  Plus, the make a pretty decent cup of coffee.

My Boo Baby decided to enter the world a littler earlier than planned and as such popped into the world in September.  On Mexico Independence Day to be exact.  Just think, an entire country and half of Tejas drinking Margaritas on the Bear-Bear's Birthday. Anyway this significance of September is this--the birthstone is a Sapphire which is much more exciting and more beautiful than October's pink Tourmaline.  That is just my opinion, but those who know me know that I do not do pink.    Do you see that fabulous picture at the top of the screen?????  The sapphires AND diamonds?!?!?!  Again, did I mention that I love my Baby Drews and Ellie?  This completely makes up for Andrew saying he bought me flowers at Costco only to discover that they were flowers that required planting in the flowerbed.

Now perhaps the best present of all was Ellie Bear sleeping in for an extra hour yesterday morning :-)

Truly, the best present is having a wonderful husband who gave me such a beautiful, perfect daughter.

Saturday, May 8, 2010

Yoga Baby

This is my daughter Ellie Bellie Bear.  She insists flipping over, getting up on all 4s, and rocking back-and-forth during diaper & clothing changes.  

She also enjoys doing the "upward facing dog" pose.

Apparently, Ellie thinks it is appropriate to do sun salutations on the changing table.

Night night.

Thursday, May 6, 2010

Pepsi Refresh Project--Vote for DS Education

One of the many goals of the NDSS (National Down Syndrome Society) is to bring awareness of Down Syndrome to our society.  There are so many misconceptions about DS. There is a lack of school inclusion as well as services for when these children reach adulthood.  True, many schools already include children with Down Syndrome in the mainstream, but what happens upon graduation?  Where will they live?  What kind of jobs can they get?  Who will help guide them?  What kind of health problems can the medical community prepare for that are unique to those with DS now that they are living longer?

You have already heard me go on and on about my favorite Cards play Albert Pujols and his work with adults with DS.

You are correct, the link above is for Pepsi.  Why do I have a Pepsi link on my blog?  Is this due to my obsession with Diet Dr. Pepper?  Not exactly, although I do love my DDP.

Pepsi is in the middle of their "Pepsi Refresh Project" where consumers can place votes on where grant money should be allocated to.  Under the $25,000 Grant, there is the option to vote for Creating an Educational Resource Program for Children with Down Syndrome.  Now I know what some of you might be thinking.  Do I need to pay to vote?  How many Pepsi products do I need to purchase to place a vote.  The answer is:  None.  It is free!  

Click here to read more about the Education Resource program.  Or you can go to and search for "Down Syndrome".  It will give you the opportunity to vote and it shows a breakdown of where the grant money would be applied.  Voting is free and easy.  You can even do it through Facebook.   The DS education idea is ranked 69th right now so place your vote!

Wednesday, May 5, 2010

Rocking & Making Strange

Every year my parents go on a rather long camping trip.  Growing up I have been to many state and national parks in various states such as Florida, Texas, Colorado, New Mexico, Wyoming, Oregon, Alabama, Michigan, Wisconsin, Kentucky, Tennessee, Virginia and then all of the states you must pass through to arrive at the above mentioned states.  I am sure that I have left some of them out.  Last year Andrew and I had the privilege to join them at Big Bend National Park.  This year, they went to the Guadalupe Mountains National Park near the TX & NM border. On the way back to St. Louis, they stopped in for a few days to visit us, I mean Ellie.  They arrived a day earlier than schedule because there was a huge wind storms with gusts of up to 80 mph.  The wind fractured one of the poles on their picnic table canopy.

Mom & Dad were in for a big treat for Ellie is starting to become more mobile.  In the past few days Ellie has started to get up on all fours for a few very short seconds.  Sometimes she rocks back and forth.  As of yesterday, she has moved backwards a few times.  

Ellie is also starting to sign "eat" without grabbing my hand and without prompting.  She sees the food and signs "eat".  If I am not fast enough for her, she will sign "eat" again.

My dad was also privy to one of Ellie's stranger anxiety meltdowns.  Yesterday my mother and I went to Joann of Fabrics.  No, I did not buy out the whole store, but I did want to.  My father was left in charge of the little sleeping Bear-Bear.  When mom and I arrived home, Ellie had snot and tears streaming down her face.  Apparently my father is very scary.

See, she looks alarmed.

If you look closely, you can see Tama laying on the island in the background as well as Andrew installing a new kitchen faucet.

Sunday, May 2, 2010

A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...