Yup, that’s me, Mrs H.  I am headed to Washington DC on Wednesday to attend the Affiliates in Action Conference.  I am SOOO excited!  The AIA is a group of DS associations from around the country and Canada who are gathering at Capitol Hill to meet with our Congressional Representatives in person to introduce our associations and the needs of our communities.  It is also a way to share best practices with the other DS associations and network with each other.  We will fly out on Wed morning then spend Wed evening in prep sessions for our meetings on Thursday.  We go to Capitol Hill all day Thursday for meetings with the Reps and spend all day Friday and half a day on Saturday in conference sessions.  The DSACT VP, and I will be delivering one of the sessions about starting a special needs church ministry and creating an inclusive congregation for people with special needs.  I cannot express how excited I am about this trip.  There are four of us from DSACT going, Lori, Suzanne, Gerard and myself. 

As if this wasn’t enough excitement for four days, I am going to meet up with Becca from The Bates Motel.  We are going to meet on Friday and I am going to see her adorable daughter Samantha!  I will try and post while I am there.

I wish I would have had a camera handy.  Sydney used my knee to stand up.  She stood up one her own without any help and stood freely WITHOUT holding onto ANYTHING!  I Whooped so loudly that I startled her!  Anthony and I made such a joyous commotion, that when she sat back down she clapped vigorously!   YEAH Sydney!!

Okay, quick update on things:

• Sydney’s eyes are looking white again, but they are still red around the outsides.  She is healing!
• Sydney’s mystery spots have not progressed and she is not bugged by them, so I am not as freaked out about them.
• Anthony’s fever is still here, he’s added a cough but is “Feeling” and eating better, so that is good news
• My ankle is ALMOST normal size again.  There is very little discoloring left.  It is still VERY weak, so I have to keep it wrapped because it twists easy.  I have resigned to buying and wearing Crocs since they are the only shoes that I can wear with my wrapped ankle.  They are comfy, but ugly.  Sigh!  I am being very cautious with it so I can safely and comfortably make my trip next week to DC.
• Randall is still looking for work and the insurance still stinks, $89.00 for blood pressure meds… which will raise your blood pressure thinking about it.  Sigh!

It’s Saturday night and I am hoping for a good night’s sleep.  Hey, a girl can always hope! =0)

Okay, so you know about the pink-eye.  It seems to be under control, but this morning ANTHONY woke up with a fever and glassy eyes!  REALLY?!?  Again we are pumping Ibuprofen into both kiddos.  It seemed to lessen the fever, but he never got rid of it all day.  He was totally lethargic the whole day which is SOOOOO not Anthony!  Sydney was grumpy and her little eyes looked like I put red eyeliner around the outsides of them.  The whites of her eyes are back… but now the outsides just look bad.  THEN I saw some spots on her neck and down her back.  A friend suggested measles… which starts with Pink eye then gets spots.  HER spots look TOTALLY different and she is not running a fever.  Poor Sydney and Anthony… all day I was inspecting them like a chimpanzee looking for fleas, and continually aking their temps and generally being a nervous mommy all day.  They made it into bed tonight looking about the same as this morning.  I am SOOOO praying that the spots are nothing!  Any prayers that you want to send our way would be greatly appreciated!

Two days ago Sydney had some neon green gook in her eyes.  I didn’t think that much of it because she had a cold in her eye in the past.  Well, she woke up yesterday with her eyes glued shut with crystallized gook.  Yup, we all know what that means… Pink Eye.  Yuck!  I called the doctor to see if they could just call in a prescription without an office visit.  Of course, they wanted to see her due to her fever.  So, $78.00 later for an office visit and some sample eye drops later… we went home with the official diagnosis.  Well, last night around 10:00 she was REALLY fussy!  She could not be consoled and her eyes were so puffy, she put Marty Feldman to shame.  I debated an ER visit, but decided to try some Ibuprofen first to see if the swelling would go down.  Well, luckily it worked!  YEAH Ibuprofen!!!  You are my hero!!  Her eyes went down and she finally stopped fussing.  Of course this wasn’t until 3:00am this morning!  UGH!  today she looks much better, but her eyes just look a little red and puffy.  I gave her IB before bed and am praying for the best…  a good night’s sleep for both of us.

Yesterday I had the privilege to go with four other members of our DS Association to Seton Main hospital and talk to an audience of about 30 OBGYNs and RNs about delivering the diagnosis of DS.  This has been a long process to get in front of these folks and thanks to Suzanne Sheppard, it finally happened.   Suzanne and Dr. Adam Barta delivered a wonderful presentation which included supporting research to back up the importance and impact that a proper (or improper) delivery of the DS diagnosis has on the parent’s psyche.  It was followed up by a DVD that DSACT made about this subject and wrapped up with a three parent panel to give first hand witnesses to good, bad and indifferent stories.  I was part of the parent panel and then shared the service that we have to come out and talk to new parents right after they receive the diagnosis.  It was wonderful to be a part of!  You could see the impact on the faces of some of the attendees.  We handed out materials to 7 different practices.  Hopefully yesterday will be imprinted in their minds and they will be able to make a more informed diagnosis going forwards.  This was the pilot for many future presentations to reach as many OBGYNs and RNs in the Central Texas area as possible.  If you want to see the DSACT video CLICK HERE.

Hello blogworld.  Would you like to participate in a fantastic program?  Little Miss E is making a handmade blanket that is going to travel around from one family to another who has a child with Down syndrome.  The Afghan will have a journal that accompanies it to each family, where the family will add their story or share an experience.  The Afghan will stay for a while then will pass along to another family.

What a great idea!! 

If you would like to participate or help spread the word, click on the image above to visit Little Miss E and get more details!  I encourage you to participate and let others know!  What a wonderful program.

Our sweet friends Denise and her lovely daughter Olivia recently moved to the coast.  We were so sorry to see them leave.  They were in town last weekend and we got a chance to meet them at a local iconic restaurant, Chuy’s.  It was a too short reunion and they had so many friends that were excited to see them, that we didn’t get a lot of one on one time.  We miss them dearly and enjoyed our little reunion.  Next time we will travel to see them!

Here’s an old picture from April 2008

What a lovely day it was today.  Valentine’s Day started out last night for me.  My lovely hubby got me a Pajama gram!  I got the cutest jammies with conversation hearts all over them!  Score one for hubby!!  This morning everyone opened up goodie bags with their Valentine stuff and hubby made heart shaped pancakes and french toast!  Woo hoo!  We went out for lunch and there were Mariachi players.  Sydney was in heaven!  They even serenaded her with the Elmo song!  She was delighted.  Today was a nice day with the family.  At one point Anthony looked at me and said “Mama, I thought you were going to tell me how much you love me today”.  You see, yesterday when we were talking about what Valentine’s Day was, I told him that it is a day where we all tell each other how much we love them.  Hee hee, what a sweet boy!  I got lots of hugs and kisses today! 

Lately the theme of special needs denial has come up.  It has really made stop and think about my own feelings.  I’ve read a few blogs where the realization of DS is something that still hits some parents like a brick wall.  Others have mentioned that they are in a mode of hope that their child will be “high functioning” and not experience much in the realm of delays.  This has all got me thinking about what MY feelings are on the subject.

This weekend I saw an old friend and he is struggling with his 18 year old son’s diagnosis of Asperger’s.  We’ll call my friend Bob for anonymity sake.  Bob was anxious to chat about what has conspired lately.  His son has been moved to a new school and making great strides in his writing skills.  He reads fine, but writing has been a major challenge.  I saw Bob’s rejoicing in his son’s progress, but there was still some unrealistic hope of a “typical” world for his son.  The son’s “quirks” (excuse the unknowledgable terms on my part) are part of who he is and may be redirected, but are not going away.  While we sat and talked, I couldn’t help but feel saddened.  I was sad for Bob and his struggle with acceptance, but also sad for his son, whom he is still expecting to be something that he is not capable of being, “typical”.  Bob also struggled just to say the name Asperger’s.  He almost whispered it.  He then gave a quick explanation that it was a high functioning form of Autism.  That really impacted me to hear his hesitation to just say the term, then the need for an immediate explanation.  Hmmm.

In my world we don’t deal with Asperger’s, but rather with Down syndrome, so as you can imagine, DS is something that is on my mind everyday.  Frankly at this point, the term DS rolls off my tongue without flinching.  Maybe it’s because I talk about it everyday because of the volunteer work.  Now, don’t get me wrong it hasn’t always been like that.  It was so hard for me to say DS at the beginning.  It was akin to the Harry Potter world’s apprehension to saying the name Voldemort, but instead saying “He who should not be named”.  At first, that’s how I felt about the words Down syndrome.  When Sydney was born, I liked the phrase T21, it seemed more exotic and less stereotyped.  For what it’s worth, I got over it and now the phrase Down syndrome doesn’t phase me like it did.  I have found that the more I have openly said the term DS the easier it got.  I have also found that people around me take their cues from me.  The more at ease I am, the more relaxed they are.

Anyway, back to my point.  On a daily basis, I see Sydney as my baby girl.  There are days when delays don’t really bug me, and then there are days where I feel like crying.  Does it make me sad to see other 18 month olds not only walking, but running?  Sometimes.  Does it make me sad that other 18 month olds say Mama and daddy, along with other words?  Sometimes, but this doesn’t bug me as much.  Why?  Because she is signing, therefore is communicating, and I am totally fine with that.  I realize that as she grows the delay gaps will get bigger and yes there are days that it does sadden me.  It also gives me great resolve to do my best to give her every opportunity that I can.  I remember saying out loud the day after getting her diagnosis that I couldn’t “marinate” in sadness, it wasn’t a good place to be and didn’t do anyone, including me or her, any good.  Marinating as you know is encompassing something in a liquid where the longer it “sits” in the marinade the more the “flavor” permeates the item.  I can’t let worry, fear and sadness permeate my spirit.  Instead I am doing my best to embrace DS and all that it brings with it.  The diagnosis ticks me off at times and at other times makes me sad, but it is what it is… and I have made peace with it.

Now, embracing my sweet Sydney… THAT my friends is EASY, and one of my FAVORITE things to do.

Sydney has discovered this chair.  It kicks back at just the right angle to enjoy a bottle.  Note the way she holds the bottle at the optimum angle with her toes.  Randall has ALWAYS teased me about my “Monkey Toes” (his words, not mine).  I am known for picking things up with them and apparently my daughter has inherited this useful trait.  I should take a tip from Sydney and find a comfortable chair and kick back and Chillax a little.  (I think I’ll grab an ice-pack for good measure)