31 for 21 Sibling Sunday: COPYCAT

Ryker likes to copy most of what Gwyn does especially with speech and sounds.  This can be very cute, and it can be not so good.  Like when Gwyn is screaming or grunting because of an auditory or other aversion in the environment.  Ryker doesn't understand her reaction and usually thinks she's trying to be funny, so he wants to do it too.  Besides those times, he is very cute when he tries to copy some of her phrases and says them in her unique voice.

I can't remember when Gwyneth and I started the "Where are you?" game, but it must have been when Ryker was just a newborn.  I've almost forgotten that this phrase was started by her, because now Ryker is the one who says it all the time in the exact way that Gwyn says it.  They yell out "WHERRRARRRUUUU?" in one long sing-songy word after someone or some object's name.

"Mahhhhh Meeeeeeee, WherrrrARRRUUU?"
"Doggy, WherrrARRRUUUU?"
"Football, WherrrARRRUUU?"

Ryker and I use this game all the time -- it's a great way to redirect him if he's starting to whine for something he can't have.  I ask him where something is that he CAN have and he searches for it while calling out "WherrARRUU" and he is excited when he finds it.  Ryker uses Gwyn's exact voice for this phrase.  I wonder how long it will be before he breaks the words up into individual clearly pronounced words.
"Where  Are  You?"

He has other funny phrases of his own with the "Where are you" game that he says all the time:
"Where Dit Go?"
"Where De Other One?" (he really likes things in pairs)
And of course "There it is!" which is always preceded by a big exaggerated expression of jaw-dropping surprise.

I have found myself now using some of Ryker's language when I talk with Gwyn.  He's in a very talkative phase so he's teaching me a lot about keeping up a conversation with a toddler.  Gwyn is still farther along in speech development than Ryker, but she internalizes a lot of what she is hearing and learning so I don't get much instant feedback.  On the other hand with Ryker, I get constant feedback about how his language is evolving every day.  He repeats everything and he practices, practices, practices talking.  Gwyn will repeat individual words if she's in the mood for it, but sometimes I can't tell if she's even paying attention.  But then, later on, she might say a word or phrase in the right context and I'll realize that she was listening after all.

31 for 21 What If Wednesday: RESPECT

What if everyone was taught to treat people with intellectual disabilities as THINKING people who deserve RESPECT?

We wouldn't live in a world where calling someone the R-word is the go-to insult for anyone we don't like, or anyone we think is doing something stupid.

We wouldn't have to deal with constantly asking people to stop using R-word insults.

Most people still use the R-word casually because they are ignorant of its deeply felt offensiveness.  And when people in the public eye are asked to apologize, most do.  Unfortunately some people stand by their use of the R-word and don't feel bad at all.  I think some people feel okay using the R-word as an insult because they don't consider those with intellectual disabilities worthy of respect.

Ann Coulter is the current offender, repeatedly using the R-word on Twitter for shock value.

A self-advocate (a 30-year-old man with Down syndrome) responds to the controversy with a well-said open letter:

http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/

31 for 21 Therapy Tuesday: DANCING ON HORSEBACK

Gwyneth was sad leaving school Tuesday afternoon when I picked her up and I'm still not sure what was wrong.  Her assistant teacher said she had trouble paying attention and it had been a long day.  It is so hard to see her upset and not to get any explanation from her about what is wrong.

Anyway, she was crying in the car before she fell asleep on the way to therapy.  Then when I handed her to the OT, she started crying again.  Fortunately, she cheered up as soon as she was put on the horse, and her OT said she was dancing and having a great time while riding.  I'm glad she shook off her sad mood.

31 for 21 Catch-up

Well, I slacked off all weekend on getting my blog posts done, so now I have to do some catch-up.

FAQ Friday: RESPITE CARE
What is Respite Care?
Respite Care is child care provided for little or no cost to parents of kids with special needs.  On Friday, we took the kids to a Respite Night in Kennesaw, GA at a play place called BounceU.  It was hosted by Corrigan Care who provides lots of volunteers to give individual attention to kids with special needs and their siblings.  They hold these Respite Nights once a month in Kennesaw.  So Reid and I went to a movie and a quick dinner on Friday night.  It's really nice to have a long break and the kids have a ton of fun too.  They get to stay up really late playing with other kids and new toys.

Speech Saturday: MCKENNA FARMS FALL FESTIVAL
We took Gwyneth to speech therapy Saturday morning at McKenna Farms where they were setting up for their Fall Festival fundraiser.  We went out to breakfast, then back to the Farm for the festival.  The main attraction was definitely the pony rides and we wanted to let both kids ride.  Gwyn of course was happy to have a ride on the horse since she has been doing hippotherapy.  Ryker loved watching the horses and even liked wearing a helmet, but as soon as he was lifted up onto the horse's back he started crying and said "no!"  So he wasn't ready to ride yet this year -- maybe next year.  But we had fun watching Gwyn ride, watching the mini horses run and jump in an obstacle course, listening to the live music and people-watching.

Sibling Sunday: BEST FRIENDS
There was a super sweet sibling moment on Friday at the Respite Night.  When we arrived to pick the kids up, they were in a small room watching a movie with other kids and the caregivers.  When we opened the door, I got to see Gwyn and Ryker interacting before they saw me.  They were rolling our unopened sleeping bag back and forth to each other and giggling (Ryker was standing and Gwyn was sitting).  They were having so much fun being silly together.  It made my heart melt to see that they are best friends.

Another sweet thing about Ryker that night was that one of the caregivers told me he had made a new friend.  There was a little boy who had Down syndrome who was probably around the same age as Ryker.  But this little boy was sitting while Ryker was walking around.  The caregiver said that Ryker was drawn to the little boy all night and was patting him on the head gently and saying "Baby" and both boys would laugh.  I got to see him do it again while she was telling me the story and it was so cute.  I like to think that in Ryker's entire life he will be very tolerant of people with differences and open to friendships with people who have disabilities.

Milestone Monday: GOOD!
This is probably not much of a milestone advancement, but for the first time today, Gwyn gave more than a one word answer to my question "Did you have a good day at school today?"  I ask her everyday when she gets home from school and she happily says "Yeah" every time except once last year (when she did get in a tiny bit of trouble for not paying attention one day and her answer was "No").  But today her answer was "Yeah, GOOD!"  To me this was big because it showed a definite understanding of the question and her own answer.  She has been giving a little more to us speech-wise in recent months.  She's been saying "Okay" a lot as a response instead of only repeating the last word that was spoken.  She still does the repeating thing (and Ryker is in this stage now too) but I feel like both kids are comprehending my words more and more each day based on some of their reactions.

31 for 21 This Moment Thursday: PRETEND PLAY

One of Gwyneth's favorite activities at home is to make up pretend conversations with her toys or other objects she finds around the house.  She used to always do this with just her hands, moving them up and down like they were talking to each other.  Now she does it with stuffed animals or markers or other small objects.  She might have a future in puppeteering - maybe even a job on Sesame Street.  :)

The stuffed toy dogs have been her top choice lately and she was playing her pretend scene with one doggy on Monday afternoon when I suggested we have a snack at the table together.  She sat in her booster seat pushed up to the table with the dog in hand while I brought my food and brought her a snack cup full of crackers.  As we ate, she started getting very animated, saying "mmm," "good," and "yummy" to her dog.  Then she decided to pretend that the toy dog was also eating the crackers.  She buried his nose into the snack cup and pretended he was eating.  I started saying, "oh, is the doggy eating crackers?" and she responded with a smile and more doggy eating noises.  She moved the dog's face from the cracker cup and I said then, "Doggy, are those crackers yummy?"  Gwyn moved his head and said "Woof."  I laughed out loud at her serious commitment to the puppeteering.  And she started laughing with me.

It was a very cute scene that I want to remember always.

31 for 21 What If Wednesday: REDEFINING DISABLED

What if we redefined "disabled"?  I posted a link to this video on my old blog when it first came out in 2010, and I think it's worth posting again.  The video below is a wonderful TED speech by athlete/model/actress Aimee Mullins talking about the meaning and consequences of the word "disabled".  I think what she's says about the power of words could also be applied to the "R-word"...

"It's not just about the words, it's what we believe about people when we name them with these words.  It's about the values behind the words and how we construct those values.  Our language affects our thinking and how we view the world and how we view other people."  ~Aimee Mullins

31 for 21 Therapy Tuesday: TURNING FEET

Therapy on Tuesdays (both OT and PT) is going very well for Gwyneth and there is not much to report.  She is enjoying hippotherapy and got to ride Heidi the horse again today.  :)

Watching Gwyn walk back from the horse barn with her Physical Therapist, I could really see her tendency to turn her feet out while she walks.  With her feet facing outwards, her gait is very slow.  Also, the PT said that it makes her progress up inclines almost impossible.  Her feet have to face more forward to be able to walk uphill.  The PT explained that because of Gwyneth's low muscle tone and lack of balance, she is trying to stabilize her body and keep from falling by turning her feet out.  As she gets stronger and more stable with walking, her feet will start to turn in.  But we will also be focusing on this issue in her upcoming therapy appointments.  She has a Benik suit which tightly fits around her body and gives input to her core muscles.  The PT is going to try to use that next week to see what difference it might make in her feet turning out.

31 for 21 Milestone Monday: CUPS

Transitioning Gwyneth away from a bottle was a very long process for us.  We moved her to a sippy cup that was similar to a bottle with a soft spout.  Then we moved her to hard spout sippy cups.  She also learned to drink from straws.

At school for the last two and a half months she has been using a cup with a lid that has a small spout but no valve to prevent spilling.  So if it is turned upside down the liquid will pour out.  At her IEP meeting last week, I asked that one of her goals involving cup drinking could be made more specific by saying she will be able to drink from an "open" cup.  I am now sending in a cup that has a recessed lid with holes in it as her next step to drinking from a completely open cup.  She has been doing well with this cup which I bought from Talk Tools several years ago.  We also purchased the cut-out cups so we will try those soon too.  I am really pleased that Gwyn is willing to try new cups now and doesn't refuse to use anything that looks different from what she's used to.  These new cups will teach her how to close her lips on the edge of a cup instead of using a spout.

Talk Tools has many great feeding and speech supplies: http://www.talktools.com/  The honey bear cup was a huge help in teaching Gwyneth how to drink from a straw.  I really recommend their feeding utensils and cups.

31 for 21 Sibling Sunday: S is for SHARING

S is for Sharing

31 for 21 Speech Saturday: TRAINING

Reid took Gwyn to her Speech Therapy appointment Saturday morning and I went into Atlanta for a Parent Liaison training from the Down Syndrome Association of Atlanta.  It was held at the new Down syndrome awareness center Gigi's Playhouse.  There was so much great information: things I can use in my new volunteer role of being a parent contact for hospitals and new families; and info I can use for Gwyn's health and development.  It was a very motivational day for me and I came away with printed materials that I can start to distribute to local doctor's offices.

Separate from our official training session, we got to hear from the director of Gigi's Atlanta location.  She described a list of items called "Formula 21" that affect kids with Down syndrome and should be addressed in their Early Intervention program: http://theskatefoundation.com/Formula21.html  Most of these issues I have not thought very much about and I feel like I need to do some catch up with Gwyneth now.  She is way overdue to have her first sleep study for sleep apnea and I feel guilty about that.  I did a small amount of oral motor exercises when she was younger and I think that has improved her speech.  And we do have a fairly healthy diet, but I'm interested in learning what more we could do nutritionally to give her the healthiest outcomes in her life.

Here are links to information on sleep apnea and healthcare guidelines for young kids with Down syndrome:
http://downsyndrome.nacd.org/sleep_apnea.php
http://www.ndss.org/Resources/Health-Care/Health-Care-Guidelines/Ages-1-5/

31 for 21 FAQ Friday: MEDICAL ISSUES?

A common question about my daughter who has Down syndrome: What medical issues has she experienced?

Answer: A heart defect that required surgery, but other than that her health has been that of a "normal" little girl.

She was getting sick a lot after starting preschool, and after her eighth time having strep, we had her tonsils taken out last May.

Here is my detailed description of the heart surgery experience:

Gwyneth was born with a hole in her heart called a VSD (Ventricular Septal Defect). This drawing of a heart was given to us by her cardiologist to show where the VSD was. The arrow in the picture shows where the blood was flowing through the hole from her left ventricle to the right.

The heart defect was discovered on an Echocardiogram performed soon after Gwyneth's birth in March 2008.  She needed to be on a small amount of oxygen and when we brought her home at 6 days old, we had portable oxygen tanks and a pulse-ox monitor.  She remained on the oxygen until just before her surgery at 4 and a half months old in July 2008.  Here's my non-scientific explanation of what the medical team at Children's Hospital (in Aurora, CO) had to do to repair it:

We went to the hospital 24 hours before Gwyneth's surgery to do some prep work. She had blood drawn, which she made her cry, but not too much. She had an EKG (Electrocardiogram) where the electrical activity of her heart was recorded by placing nodes on her skin. They are just stickers so she didn't mind at all. She had a chest x-ray which was her least favorite part of the day. In the radiology department, we were allowed in with her and were given lead smocks to wear. They have a very large machine that looms over a low table. They asked us to place Gwyneth on the table and hold her arms up next to her head and hold her hips and legs down. Being held down is what made her scream and cry. It was hard for us to see her so scared, but the x-rays were quick. They took x-rays while she was lying on her back and her side, each time with us restraining her while she was crying. Poor girl!  But we were comforted by the fact that we made many trips back to the radiology department for x-rays after her surgery and she was completely used to it after a few times and let us hold her down without any complaints!

She next had to be sedated with a drug called Chloral Hydrate so that an Echocardiogram (an ultrasound of the heart) could be performed. She had had many ECHOs in the past while being awake, but for the surgery they needed a very clear picture of heart so she had to be completely still. She was still "asleep" from the ECHO while we pulled her around in our Children's Hospital red wagon and had a tour of the CICU (Cardiac Intensive Care Unit) where she would go after the surgery was complete. We also met with the anesthesiologist and the surgeon to discuss the surgery and talk about the risks and recovery.  That night we stayed in a hotel near the hospital because our home was an hour drive away and the surgery was scheduled for early the next morning.

On the morning of the surgery we washed Gwyneth's chest with an antiseptic skin cleanser, then left our hotel to check in at 6 A.M. at the hospital. When Gwyneth was taken away for surgery we waited outside the cardiac unit for 4-5 hours. While the surgery was happening, we were given periodic updates by a nurse. The surgery was "open-heart" which means they had to open her chest and cut through her breastbone to expose her heart. They stopped her heart for around an hour while a heart-lung machine pumped for her. To repair the VSD, the surgeon stitched a small synthetic patch over the hole. (For an excellent behind-the-scenes description of a surgery very similar to Gwyneth's, check out the book "Choosing Naia" by Mitchell Zuckoff. Naia's surgery is described in Chapter 17 and I felt chills while reading it.)

We sat and waited for news during the surgery with our red wagon of essential items: pillows, suitcase of clothes, breastpump.... I tried to keep busy making a blanket, and Reid did his best to distract me by making fun of my knitting skills. I knit an entire row in Gwyneth's blanket before I realized it was the wrong stitch, and I spent the rest of the time undoing all the stitches....

After the surgery, we were taken to the CICU where Gwyneth was being monitored very closely.  I have a close-up picture of her with all of her wires and tubes, but it's a bit graphic. It was shocking to see her that way and I almost fainted the first time the nurses let me try to change her diaper.

It took her several days to start to seem like herself again. Needless to say, she was in a lot of pain and there were ups and downs with her recovery. When she was ready, Gwyn was moved out of the CICU and into the step-down unit. One of her favorite things was a visit from the Respiratory Therapist who would pat Gwyneth's back very firmly with something like a small rubber mallet.

I stayed and slept in Gwyn's room during her week-long recovery, pumping breast milk and learning from the nurses how to give her the medications and wash her incision.  Reid was able to stay in a family friend's condo in Denver so he could come to hospital every day.  We had so much support from family, friends, and co-workers during this time. We appreciated everything that everyone did for us and Gwyneth!

Gwyneth's surgery was considered very successful by the medical professionals. The VSD was closed completely with no residual leakage, which means not only will she not need any further surgeries, her heart is 100% healed! She came home on some medications and a small amount of oxygen, but we were able to wean her off of everything before too long. Her post-operative care included cleaning her incision every night and no tummy time for a while. She couldn't be submerged in water and I used double or triple bibs to keep her chest dry! We couldn't pick her up under her arms for the 6-8 weeks of the post-op period.

Her latest cardiology check-up was last January and they thought she looked and sounded so good (no heart murmur at all) that her next check-up won't need to be until January 2015!

31 for 21 This Moment Thursday: HER OTHER LIFE

Gwyneth is only 4 and a half years old, but I realized today that she already has a whole other life outside of our family.  I had a meeting at her school to extend some of her IEP goals (now that she has started walking) and it ended up covering the general parent-teacher conference as well.  I was shocked to see how different Gwyn's school persona is from her personality at home.

During the meeting, Gwyn was crawling around and interacting with areas all over the classroom.  She was very busy and active and engaged all on her own.  At home, she is not very active and I have a very hard time motivating her to play independently, let alone "teach" her anything.  She seems to sense when I get into "therapy mode" and she stubbornly resists those activities.

So I was surprised to see her pull up at a table to drink from her juice box, move around magnetic words on a board, point to words on a poster and "read" them, pull up at a chalkboard easel and draw with chalk and then use the eraser......  She went close to an area that was off limits (some electronics I think) and just before she touched it she looked at her teacher.  The teacher gave her a stern look and Gwyn smiled mischievously and pulled her hand away.  The teacher also showed me their sensory playroom in another part of the school and I saw Gwyn climbing all over bumpy foam mats and trying to jump on a mini trampoline with the teacher's help.  It was a very eye-opening visit for me.

I didn't think it could start so early that Gwyn would have created another life for herself, but it has.  Part of me is sad to see that there is so much that she experiences during her weekdays that I have no idea about.  I feel especially in the dark because she cannot tell me any details of her day when she gets home.  But mostly, I am proud that she is establishing an independent life outside of our family unit.  I want her to learn to be her own person.  I want her to learn how to get along without being completely dependent on us.  I want her to build relationships with the people in her world.  And today I saw the beginning of Gwyn's Other Life.

31 for 21 What If Wednesday: MAKING A DIFFERENCE

What if I could make a difference for the new families?

I am very excited, but also a bit nervous, to become a Parent Liaison with the Down Syndrome Association of Atlanta.  I am attending the Parent Liaison training this coming Saturday and I've volunteered to be the contact at a local hospital for families that give birth to children with Down syndrome.

When Gwyneth was born four and a half years ago we did not have a visit from a parent of a child with Down syndrome.  I think it would have made a monumental difference in our first months with her.  We were lucky enough, however, that there was a lactation consultant who worked with us who has a daughter with a developmental disability and hypotonia like Gwyneth has (which made breastfeeding hard).  This woman made a big difference for us in those early confusing days.  We were bombarded with visits from all types of medical professionals, some of whom (I know now) did not say the most appropriate things.  It tough for anyone to know exactly what to say in a sensitive situation like that.  So it was very helpful to meet a woman who could give us empathy, instead of hesitant sympathy, because she had been in our shoes.

The biggest turning point for us in our early journey as Gwyn's parents was when she was 6 weeks old.  We went to a Down syndrome support group for families that had kids ages 0-5.  Neither of us had ever known young children with Down syndrome before.  Only teenagers or adults.  So to see a few 2- and 3-year-old kids with Ds running around and playing with each other and the siblings was eye-opening.  And talking to the parents and hearing their stories made me realize we weren't alone.

I hope I can make a difference for the new or expectant parents in my area soon and give a little back to this wonderful community of Ds families.

This video came out at the beginning of the year, and I loved it's message to new parents.  It is also full of well-explained facts and figures.

31 for 21 Therapy Tuesday: HEIDI THE HORSE

I was very pleased today to be able to observe Gwyneth's hippotherapy session.  When she started in August, it was upsetting for her to see me nearby because she wanted me to "rescue" her.  But now she is comfortable riding the horses, so I watched from a distance today.

Today Gwyneth rode on a golden horse named Heidi.  She looked so cute with a giant helmet on top of her little body riding forwards, then backwards on the horse, and then side-saddle.  The OT walks along side the horse and holds onto Gwyn while a volunteer leads the horse.  They stop and start a lot to work on Gwyn's balance.  When they were stopped I could hear the OT asking Gwyn to tell the horse "Go, please" or "Walk, please" and Gwyn would yell it out.

When the riding was done, Gwyn's OT held her hands and asked Gwyn to slide off the horse.  It is unbelievable to me that Gwyn would scoot forward to slide off the saddle and fall to ground with only her hands being held.  She really trusts her OT.  I expected her to be scared and need help down.  When she was on the ground, the OT had Gwyn say "Thank you, Heidi" to the horse and pet her nose.  As they walked away, they said "Bye, Heidi" and "See you later, Heidi."  Extra adorable to hear Gwyn talking to Heidi. :) I love seeing Gwyn so comfortable with an animal that is so much larger than herself.  I am thrilled that we were able to get her cleared for hippotherapy after her brief diagnosis of AAI (Atlanto-Axial Instability) was reversed.  It has been so good for her!

31 for 21 Milestone Monday: MY NAME IS...

Last month Gwyneth surprised us by revealing that she learned to spell her name!  All of the repetition at school and home has really paid off.  She was talking in the kitchen during lunch one weekend and she was saying "name" and "Gwyn" and then I heard her say "G...W...Y...N!"  So awesome to hear that. :)

31 for 21 Sibling Sunday: RYKER'S FIRST BUDDY WALK

Little brother Ryker experienced his first Buddy Walk today at Atlanta's Centennial Olympic Park; and he had a blast!  He danced to the music, ate a ton of food, and roamed around making new friends everywhere (and playing with their soccer balls).  :)

Gwyneth had a rough start to the afternoon with a small "tantrum" from sensory overload I guess.  We had chosen a place on the grass to eat our lunch that was near a cornhole bean bag toss game.  Gwyn was upset, close to crying when I wouldn't let her hug me constantly, and refusing to eat for a while before I realized that she didn't like the nearby noise and actions of the bean bags hitting the wooden cornhole boards.  Luckily the game ended and she was willing to eat a tiny bit before the walking started.

This was the first year that Gwyn was able to get out of the stroller and walk across the finish line!  We are so proud of her.  I'm sure that next year, she will be walking without us holding her hand.

31 for 21 Speech Saturday: NEW PHRASES

Gwyneth is talking more and more these days.  Her vocabulary is increasing from being at school, reading books, watching educational shows like "Super Why!" and going to Speech Therapy on Saturday mornings.

Here are some of the cute new words and phrases she has started saying:

"Good morning!" (said at all times of the day)

"Oh, George! GEORGE!!!! Oh no!  Ohhh...it's okay, George" (from watching Curious George...she names most of her stuffed toys "George" and she pretends that they are getting into trouble like Curious George)

"Notebook" and "Look! A clue! A CLUE!!" (from watching Blue's Clues)

"Take a bow" (from Super Why's Princess Presto)

"ZZZZAP!" (also from Super Why)

"No screaming, Ryker! Time out!" (copied from Mommy)

"Mugo, no kissing!" (learned from Mommy talking to one of our dogs who licks everything)

(Shaking hands) "Nice to meet you. What's your name?*" (from practicing this at school)
*and also sometimes answers this question with "Gwyn" or "Gwyneth"

:)

31 for 21 FAQ Friday: DID YOU KNOW?

One question that parents with kids with Down syndrome often get asked is: Did you know before they were born that they had Down syndrome?

For us, the short answer is: We knew it was possible, but we didn't know for sure because we declined the amnio.

For a longer explanation, I will repost here the first blog entry I made when I started my previous blog "Megan's Place in the Sun" back in 2008:


Thursday, November 6, 2008
First Blog

Today, November 6th, Gwyneth turns eight months old! I can’t believe how fast the months have gone since her surgery.

Today is also the 1 year anniversary of an ultrasound I had where two things happened: (1) we found out our baby was a girl and (2) the phrase Down syndrome was first mentioned to us. Four days earlier, at 21 weeks pregnant, we had the traditional mid-pregnancy scan that I had looked forward to as one of the highlights of my pregnancy. We wanted to know the sex of our baby but the little being was sitting cross-legged and hid the answer from us! That was Friday morning. Over the weekend we decided we would just wait until the birth to know the gender, and we got kind of excited at the idea of a surprise. On Monday, my doctor’s office called with a different kind of surprise. The nurse said that some things on the scan were concerning, particularly the lungs and kidneys, and I would require a follow-up ultrasound with a perinatalogist. One would be coming from Denver to our local hospital the next day so she made me an appointment. This was the beginning of my denial stage (which lasted until 2 days after my baby was born) in which I believed that the doctors were being overly cautious and my baby was going to be perfectly fine. I think it was simply a defense mechanism as an expectant mom to have blind faith that the baby I was carrying was healthy.

Nevertheless on Tuesday, November 6, 2007, we nervously went to the hospital to see our baby on a scan again with very different emotions than the scan four days earlier. The ultrasound technician couldn’t tell us much except for the sex of the baby, so we decided to find out after all. When she said “it’s a girl” I started to cry; the emotional build-up to that one little piece of information had been incredible. Eventually the perinatalogist came in to explain to us that he saw some potential problems: there was fluid around one of Baby’s lungs that was not draining out, the kidneys might be a little dilated, and the humerus bones were measuring a little shorter than average. He asked if we had done the blood screening tests earlier in the pregnancy to search for birth defects or chromosomal abnormalities; we had not. He said the issues he was seeing on the scan were considered soft markers for Down syndrome but could not diagnose it definitively. He recommended that we do an amniocentesis right then since I was already almost 22 weeks pregnant. I don’t remember if he actually mentioned the words “abortion” or “terminate” but I know that it was implied. He explained that with ultrasound guidance the amnio needle would be inserted in my belly as far from the baby as possible to withdraw some of the amniotic fluid. I asked about the risks of miscarriage which are 1 in 200. We asked if doing the amnio would allow doctors to know anything that could help with improving the health of our baby; he said no.

He left us alone then to decide what we wanted to do. It was an extremely surreal experience. The idea of Down syndrome did not sink in yet, but I was not afraid of it because I had heard enough about DS in the past to form the opinion that people with DS could lead happy and fulfilling lives. I knew I could not give up the little girl that was growing inside me and I started to feel very protective of her. I wanted to protect her against the risk of miscarriage from the amniocentesis. I knew that if I went along with it and lost her then, Down syndrome or no Down syndrome, I wouldn’t have been able to forgive myself for making a decision that put her in harm’s way. So we declined the amnio, telling the perinatalogist that the information wouldn’t change our minds about continuing the pregnancy and we started to talk with him about the future and the health of our baby. We continued to have ultrasound check-ups once a week to watch the problems, especially the fluid around Baby’s lung. At that time, there was never any problem seen with her heart or any other indications of Down syndrome such as the nuchal skin fold marker or shortened femurs.

Within a month, the fluid was gone and our baby seemed to be out of danger. On December 11, 2007 we had our last ultrasound of the pregnancy and confirmed that her lungs looked healthy. The perinatalogist said that there was still a chance that she had Down syndrome and we wouldn’t know until she was born. I doubted that she had DS and asked him what he thought the chances were. He said 10%; I thought “Okay, 90% chance she is normal” without realizing that 1 in 10 is a significant increase from the 1 in 1000 rate for an expectant mother my age. The concerns were pushed to the back of my mind as I entered the 3rd trimester, happy to believe that everything was okay.

Since Gwyneth’s birth I have learned that many people do not receive any indications of DS during pregnancy and are first confronted with the diagnosis when their baby is born. I feel lucky that I did have time to think about the possibility and sort through some of my feelings before her birth. Other parents do find out during pregnancy through amniocentesis (or other invasive tests) and receive a prenatal diagnosis. I was shocked to also learn that of people with an official prenatal diagnosis of Down syndrome, around 90% choose to terminate. I believe women should have the right to choose this option, but it saddens me that this number is so high. I can only think that people must not be aware of how wonderfully children with DS can enrich the lives of their family and others. This has inspired me to become an advocate for Down syndrome and help to educate people on the reality of the condition in today’s world.

31 for 21 This Moment Thursday: BIG YELLOW BUTTERFLY

For "This Moment Thursdays" I want to share a picture or a story from one moment with Gwyneth that happened during the week that I don't want to forget.  There are so many small moments that are amazing that we we experience that will be gone from our memories in the future.  I had the idea for this today, when one of these moments happened and I was lucky enough to capture it with a picture.

I bought a sand & water play table for our back deck and put it together today.  Ryker and I played out there this morning while Gwyneth was at school.  When she comes home from school on the bus, Ryker is always down for a nap so Gwyn and I have some time alone together.  Today I showed her the table and we went out to play.  She loved the water side of the table and kept calling it the "sink."  Right when I took out my camera to take her picture, a big yellow butterfly flew up to us and hovered over the table for a second before fluttering away.  I got a picture of her face just as the butterfly was going away.  The pure joy and excitement on her face is just precious and makes my heart melt.

31 for 21 What If Wednesday: ESPN VIDEO

In the video below from ESPN, the mother of a child with Down syndrome asked herself briefly while pregnant: "What if I aborted her? What if I got rid of her?"

My Wednesday question:  What if everyone could know how wonderful it is to have a child with Down syndrome?  Just like with having any child, every day is not always sunshine and smiles.  There are tantrums and sick days and that's just Life.  But what if everyone knew that having a baby with Down syndrome is NOT a tragedy?
The answer, I think, is that those of us who do have children with DS would be able to skip the "emotional roller-coaster" (as Heath White calls it in the video below) of the initial diagnosis; and the heartbreak and guilt that comes with our first reactions to the news.  Also, I would hope that acceptance of our children from the medical community and society would be much improved!

This amazing video from ESPN details one father's story of reaching acceptance about his daughter having Down syndrome.  Air Force pilot, competitive runner, and FBI agent, Heath White talks about how he was changed by his daughter.  This is the most honest story I've ever heard about a father learning their unborn baby has Down syndrome.  If only he knew then what he knows now.

31 for 21 Therapy Tuesday: FUN AT THE FARM

On Tuesdays, Gwyneth goes to OT and PT at a therapy center called McKenna Farms.  She has been doing hippotherapy and starting to get used to the horses now.  Today was a day of celebration, of course, after her accomplishment yesterday of walking independently.  She showed off her new skill at preschool this morning and at the Farm with her therapists.  I could tell she was having so much fun today, because I could here cheers of "Yay Gwyneth!" and her own little voice saying "Yes!"  She is very proud of herself and soaking up the positive attention she has been getting all day long.

31 for 21 Milestone Monday: FIRST STEPS

October is National Down Syndrome Awareness Month and I have decided to participate again in the 31 for 21 blog challenge.  Many many bloggers are taking part in this month-long challenge to raise awareness of Down syndrome by blogging every day in the month of October.

I was thinking of keeping each weekday to a theme to give myself some structure.  I am VERY happy to say that I've made a last minute change to the Monday theme due to an unexpected MAJOR accomplishment by Gwyneth tonight.  SHE STARTED WALKING.  So I will kick off my 31 for 21 posts with the first "Milestone Monday"....

I have been waiting so so so long for this moment.  Gwyneth is 4 years and 7 months old and today, October 1st, she walked independently.  She walked willingly and happily.  She giggled, she cheered, she beamed with pride.  And I have not been able to stop smiling all night.  I took about a million video clips of her.

A lot of factors in the last few months have come together to make this moment happen.  Gwyneth's baby brother started walking in July (at 18 months old), Gwyn started back at school August 1st where she is exposed to hundreds of walking kids, Gwyn started hippotherapy, and she has been walking with only one hand held for two months.  She has been building up her strength and coordination, and finally she felt stable enough to let go and take her FIRST STEPS on her own.

The best part of tonight was that Gwyneth was having so much fun reaching this milestone.  At first she just took two or three steps for me, but we kept practicing and going further, and by bedtime she was walking ten steps and trying to push herself further.  She tried getting back up to stand in the middle of the floor when she fell (when she has always only used furniture to pull up on to stand).  I have never seen her so motivated to do something physical.  She kept going and going and actually got herself out of breath.

I have a slight guilty feeling that my reaction to her walking is much bigger than when my "typical" son started walking a few months ago.  But I think my reactions and celebrations of each event is in direct proportion to the amount of time I had been dreaming of the moment for each child.  And because Gwyneth was my first child, I always thought I would be experiencing her first steps before I had any other children.  So having another baby when Gwyn was almost 3 years old, and then watching him learn to walk first was a little bit hard.  But I was definitely so proud and so excited for him.  The difference was he learned it on his own, and for Gwyneth it has been an uphill battle with therapy and equipment and orthotics and lots of forced "practice."

So happy for our little girl Gwyneth!  And I can't wait for her therapy sessions tomorrow!