2 for 1

Since I was unable to get onto my blog yesterday here are yesterday and today's words of wisdom, LOL.

Today: 

It is very important when talking about a person with Down Syndrome to put the person first.  It is incorrect to say a Down Syndrome baby, child, adult, etc.  That is making their genetic condition more important than their own personality/being.  Also it isn't Down's Syndrome.  

We saw this incorrect labeling when People magazine did an article on a model with Down Syndrome.  The title was Down Syndrome Baby Model, to use first person language it should have been Baby Model with Down Syndrome.  

This may sound petty to others but to use who have family members is it important that you see our family as people first who happen to have a genetic condition called Down Syndrome.

While I'm on the topic of labeling it is also important to spread the word to end the word.  And what word am I talking about, well its the r-word ("retarded").  This is a very offensive word that has been used by many people even health care professionals as a derogatory term in their everyday lives.  Instead of using stupid or lame, they use the R-word.  I admit I use to use it before I had Reyna without thinking about how it would effect those with mental disabilities.  Now that I have Reyna I don't want anyone ever using that word to describe her or anyone else for that matter.  I cringe thinking about the day someone calls her the R word and then all the tears that will come along with that when I have to build her self-esteem back up.  Please save me that heartache and remove the R word from your vocabulary, its not hard to do.  

Yesterday:
Day #3 Myth Buster
MYTH: Down syndrome is a rare disorder.

TRUTH: Down syndrome is the most commonly occurring genetic condition. One in every 691 babies in the United States is born with Down syndrome, or approximately 6,000 births per year. Today, there are more than 400,000 people with Down syndrome living in the United States. Down Syndrome is found in all races, socioeconomic classes and countries. Nothing you do can cause Down Syndrome it just happens.

Fun Little Fact #2

Fun Little Fact #2:
There are 3 different types of Down Syndrome.

There is Trisomy 21 DS (95%), where all cells in the body have that extra 21st chromosome.
There is translocation DS (3-4%) where a piece of the 21st chromosome is attached to the another chromosome, usually chromosome 14.  Translocation DS is the only type of DS that can be inherited and both parents need to have genetic testing to see if it was genetic or by chance.
And finally there is mosaicism DS (1-2%) where only a select few cells have the extra 21st chromosome.

Our sweet Reyna has Trisomy 21.

October is Down Syndrome Awareness Month

So in honor of Down Syndrome Awareness Month I will try to educate everyone on things you may not have known about Down Syndrome (DS). Something you can pass along to someone else and help spread the word and awareness.  

Every day of the month I am going to give you either a myth about Down Syndrome which I will tell you why its a myth or just a little tid bit of information about Down Syndrome that you may not have known already.  

So here we go with our first myth buster...

Myth #1: Babies with Down Syndrome are born only to women over the age of 35.

Fact: Well obviously I am not 35 yet, so that has to be false. In fact advanced maternal age does contribute to being at higher risk of having a child with DS. But what you haven't heard is that 80% of children with DS are born to women under the age of 35. Why you ask, its because women under 35 yrs old are more fertile and tend to have more children.

Someone turned 1 !!!!!!!!!!!!!!!!!!

Where did the time go?  It seemed like just yesterday we were holding my precious baby girl.  This year has gone by so fast, it seems even faster than Omar's first year.  Reyna had come so far from that low tone infant that had problems nursing to a now 13mo old, I'm a little behind on my blogging, who never stays in one place for more than a minute.  She is sitting up on her own and this she did a week before her birthday.  Sitting-up was something we were constantly working on with her.  In Washington, D.C. she also began sitting from a lying position and that was huge.  It was like she knew we had set that goal and she was going to master it by her birthday.  As of now Reyna is doing her own version of army crawling and its successful because it gets her where she want's to go.  As practice we will put her down about 5 or 6 feet away from her toys that way she has to figure out how to get there.  She is also a climbing machine, anything or anyone sitting on the floor its game on.  You have now just become Reyna's personal climbing toy.  She has also started pulling herself up to standing at the couch and on us.  A couple times she even let go, but wasn't able to keep her balance and she fell.  She has accomplished so many goals and we are so proud of her determination, we know that by christmas she will be crawling and hopefully not too far after that she should start walking.

1st taste of cake

Health updates:

I think she liked it

At Reyna's 12mo appointment she was still trucking along the growth chart as she should and is gaining that appropriate amount of weight.  So we shifted her from formula to whole milk, she did the transition seamlessly and is doing great.  At her 12mo appointment they did routine thyroid tests and it turns out that Reyna has subclinical hypothryroidism, which is very common in those with DS.  Her free T4 levels were within normal range but her TSH (Thyroid Stimulating Hormone) level was significantly higher than normal range.  So she was immediately started on 50 mcg of levothyroxine (synthroid) to help.  We never saw any signs and symptoms of hypothyroid which are constipation, fatigue, weight gain (more than normal) to name a few.  This last week she had both her annual hearing test and an appointment with her endocrinologist Dr. Prakasam.  During her hearing test they tried to assess her hearing behaviorly but she wasn't able to be conditioned to the test and the audiologist thinks this is partly because of her delay in development.  They continued to do a Otoacoustic emissions (OAE) testing indicated present OAE's bilaterally for the majority of the frequencies (pitches) tested. This is consistent with normal/near normal outer hair cell function (in the cochlea (sensory organ for hearing)).  This is a good indication that she hears well, however this test alone does not rule out hearing loss. For instance, she can have a mild hearing loss and still pass the OAE test.  So she suggested to also have Auditory Brainstem Response (ABR) evaluation.  To do this Reyna would need to be sedated.  I have referred to our pediatrician who will let me know what she thinks.  It seems that all persons with DS have some type of hearing loss and the degree isn't consistent it all is determined by how much fluid is in the ear canal and I have been told by Reyna's pediatrician and the audiologist that Reyna has small ear tubes.  I don't know exactly how this contributed to hearing and the fluid that may or may not accumulate in her ears but its definitely something that I will be asking the next time I see her pediatrician.  This week Reyna also got to meet her endocrinologist Dr. Prakasam.  I have worked with him before at work, and he is very nice as are the other doctors in his group.  He went through the signs and symptoms of subclinical hypothyroidism and the levothyroxine.  He said that he wanted to see Reyna in 3 months, since she had just started the levothyroxine and wanted labs drawn 2 weeks prior to the appointment to assess if the dosage needs to be changed.  He let me know that most children are on 50 mcg of levothyroxine and didn't think we would need to change it but that is why labs need to be drawn.  He also linked me up to her chart in his office which I like because I can have access to everything they do.  

Other than those health changes, her therapists are amazed with her progress, some hadn't seen her since before she was sitting up and it was a huge change for them.  We have our annual review in October with everyone, teacher, speech therapist, occupational therapist, nurse, and sight teacher.  At that meeting we make new goals for next year and see how many other goals we set for Reyna initially she has met and if she hasn't met any of those goals how can we help her achieve them. We are so greatful to everyone that has help us in this past year.  It was a tough one getting used to all her appointments and therapy but we did it and now we are prepared for next year.  Reyna is showing us that with determination and a little guidance you can accomplish anything.  Just think about 20 years ago medical professionals were telling parents of babies with DS that their children will never walk or talk and that they need to be institutionalized, boy were they wrong.  Reyna is blooming in this household as are those babies, children and adults with DS in this world.

Birthday Girl

 Here's to another year of adventures!!

NDSC 40th Convention

A trip to Washington, D.C. was planned as a vacation/educational experience.
And boy was it :) 
The trip started with a bang in the form of a 3 hr layover.  We had planned on flying at midnight, so the whole car ride to San Francisco we kept Omar awake in the hopes of having him sleep the entire flight.  That PLAN was ruined with the flight being delayed.  So when we finally boarded the plane close to 3am. Both Omar and Reyna had fallen asleep before boarding.  Of course boarding had to wake up Omar who continued to cry for what felt like the first hr of a 6hr flight.  I'm sure it wasn't that long, but it sure felt like it to us.  Reyna was an angel, she slept the entire time.  In Milwaukee there was a 1hr delay, but the flight from there to D.C. was even better, Omar was only uncomfortable for a short time.

We finally made it, to the humidity of Washington, D.C. Upon picking up our luggage and trying to figure out how to get to the metro we met a older couple who had a daughter in her 20's who was headed to the same hotel for the same convention.  The metro reminded me of SF BART, which made things easier to navigate.  Unfortunately we were traveling in the 4pm rush hour with 2 kids, a double stroller and 2 rolling suitcases.  Now that was fun, but we finally made it to the hotel and when we left the metro station we were right in front of our hotel.  It couldn't get any better than that.

We checked in and got our room, our initial room was too hard to get into with a double stroller so we got upgraded to a suite.   It was just the right size for all the stuff we had.

The convention was great, emotional for me at times but we walked away with an abundance of knowledge.  I think the emotion came from seeing all those beautiful children and young adults with DS and everything that they had accomplished.  For example during the banquet a news station was recognized for their outstanding story about a young man who owns his own restaurant in New Mexico with the help of his parents.  That award was a tear jerker for sure, it made me realize even more that Reyna could truly accomplish anything she wanted with the support of her family.

While in Washington, D.C. Reyna mastered sitting and also going from laying to sitting.  She is growing up so fast.

Then of course you can't be in Washington, D.C. without sight-seeing, so we spent three and a half days.  We were able to go to the American Indian Museum and National History Museum in one day as well as spending half a day at the National Zoo, all of which were free.  Omar's favorite was the National History Museum because of all the animals of course.  On our 2nd full day we went to Arlington Cemetery and that was a somber day as there was a burial procession/ceremony while we were there.  It was amazing to learn that they do 20-30 of those a day.  We of course had to see President Kennedy's eternal flame and the changing of the guard at the Tomb of the Unknowns.  Our 3rd and final day sight-seeing was touring the National Mall, we saw everything and when I say that I mean it the only things we didn't see were the Capital as well as Thomas Jefferson Memorial and the Roosevelt Memorial.  It was so much to take in and I was glad the kids did good.

 

We left feeling like we accomplished a lot and looking forward to the 41st NDSC Convention which in 2013 will be in Denver, CO.

Nobody Puts Baby In The Corner

Baby in a Box

Reyna is making strides in her development.  Last month we started her on a little exercise called Baby in a Box, its to help her learn to sit up and also for arm strength.  What has happened is because she has low muscle tone she isn't very strong in her arms or core.  Her legs and back on the other hand are very strong.  We are doing everything we can to help remind her that her arms are there to help stop her body when she starts falling while sitting.  On Friday May 4th, Reyna's Occupational Therapist Terrye came over to see how she was doing.  She was doing such a good job in the box that she was upgraded to Baby In a Corner.  As much as I love Dirty Dancing we had to do it.  We put Reyna in the Corner and she is doing so well.  I think she will have graduated out of the corner in about a month.  We are still working on her arm strength.  The reason that is so important is so that she can start crawling and then eventually walking.  She is tucking her legs under her bottom and pushing with her feet on the ground but her chest and arms are still touching the floor and don't move.  I feel like we are crazy for encouraging and helping her gain muscle strength so she can learn how to crawl. I know when she finally is able to do it we will be kicking ourselves.  Right now we are only having to run after Omar and soon its going to be both of them in opposite directions.

Exercises with her occupational therapist (OT) Terrye

Baby in a Corner

Reyna also had her 9 month check-up where we were a little disappointed in her weight gain, only 2 ounces in 3 months.  She has plateaued and I think its because she likes the instant gratification bottle feeding gives her,so when she is nursing she doesn't eat long enough to get the hind milk which is full of fat to help them chunk up.  So we are now having to supplement with formula after she nurses.  She doesn't mind and is doing great with formula, with the exception of having really stinky diapers.  We have also started Reyna on solids, she gets all excited when we put her in her bouncy chair and take away her mobile because she knows food is coming.  So we have a check-up again in 6 weeks and hopefully she has gained weight and we don't have to doing anything else.
Her cardiology appointment today went wonderful.  To recap, her one week Echo showed that she had 2 ASD's (holes in the divider between her right and left atrium). At this Echo, "she only has one teeny tiny hole" as quoted from her cardiologist Dr. Wright, the other ASD closed on its own.  So now we just see him at 2 years old to make sure that teeny tiny hole has closed. Even though having an ASD doesn't cause too many problems for people, its great to know that her's are closing and that she doesn't need any interventions.

kisses for mommy

our happy little ladybug

So what is next for our little family, well we have our hotel, airline and convention fees for the National Down Syndrome Convention in Washington, D.C. this July.  We are so excited not only to network with other families but also to sight-see in the nations capitol.  If you have ever been there please let us know places we must see and eat at.  Then right after that our little ladybug is turning one.  I can't believe that in a little more than 2 months she will be a year old, where has the time gone.  She has come so far and we are so proud of her.
Ta-ta for now, we will have more info soon.

A month of celebrations

Reyna has been busy accomplishing some very important developmental milestones. The first is she finally found those cute little toesies of hers.  Now that she discovered she has legs, feet and toes she just can't leave them alone.  In fact she has even started sucking on them when she is tired of her fingers.
She has also started really talking to us.  Now instead of noises, she is saying ma-ma-ma, da-da-da and ba-ba-ba.  We were very excited about this one because this is a very important predictor as to if her speech will be delayed.  From the looks of things she is right on track. 

Lastly her latest accomplishment is that she is now able to stand when we hold her up.  She immediately wants to stand when she pulls herself up holding your hand from laying to sitting.  Its funny that while our kids grow up we celebrate all these little accomplishments without looking at the bigger picture. 

Amongst all this development celebrating we had 2 more celebrations.  March 7th was the designated day to which thousands pledged to spread the word to end the word.  What word might you ask is that, its the R word.  Pedro and I made the pledge to remove that word from our vocabulary because it is such a derogatory word.  It has now been replaced by the word intellectual disability by us and the medical community.  We hope that some of our family and friends were among the thousands that pledged.  March 21st is another important day in the Garza household, its World Down Syndrome Awareness Day.  Its a day when people from all across the world come together to celebrate those special people on our lives with that extra 21st chromosome.  Omar and mommy even sported our 3:21NDSS shirts at Disneyland on March 20th since we were driving home on the 21st.  Even Tigger asked what the date on the shirt was for.  Daddy helped in the awareness by wearing his Step Up For Down Syndrome shirt with Reyna's beautiful face on it.

 Disneyland was wonderful this time of year, it was cold and rainy which made for very short lines on all the rides.  The most we waited was 30min for a ride.  We got on everything Omar and Reyna could which was all but most of the rides at California Adventure and the big rides at Disneyland.  On our last day though the sun came out and made for a perfect last day spent there.  Omar and Reyna loved it, they got lots of character autographs and pictures and saw the night shows and parades.

my sleeping beauty

infatuated with Mary Poppins

with her first minnie ears