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!

New Beginnings

A few weeks ago Gwyneth began a new school year of pre-K at a new elementary school with new teachers. She was transferred from our previous school because a new special education pre-K class was created at the elementary school that we are zoned for. So she is now at the school where she can continue into Kindergarten and through Fifth Grade.  I think the transition has been much harder for me than for her.  I had developed a rapport with the teachers from the last year and a half, but now all the new teachers and therapists will have to get to know Gwyneth and myself.  Gwyn is riding the bus again in her wheelchair.  I really hope she will be walking and out of the wheelchair by the end of this school year.

The other new beginning that Gwyneth will be experiencing this month is starting hippotherapy at the Farm on Tuesdays.  We don't have therapy on Fridays anymore.  We are going to OT and PT on Tuesday afternoons and Speech on Saturdays with our Speech therapist from last year.  I thought we might be able to start hippotherapy today, but it looks like it will be next Tuesday when Gwyn will get up on a horse for the first time.  She will alternate weeks, riding the horse with her OT one week and her PT the next week.  They will work on different skills and building different muscles each week.  It might take her a while to warm up to the horses, but I'm really excited for this new chapter in Gwyn's therapy.

Friday at the Farm: Ready for Vacation

Today was our last Friday at the therapy center for the month of June. On Tuesday, my mom and I will fly back to Colorado with the kids and I'll stay for 3 weeks.

To keep up with Gwyneth's therapy, here's our "homework" right now for each area:

For Speech Therapy, we are trying to get Gwyn comfortable with some oral motor stimulation which is like a massage around her mouth. The therapist has suggested trying an electric toothbrush or something that vibrates.

For OT, I'll be bringing Gwyn's therapeutic listening headphones with us to continue that program.

For PT, I am bringing the kids swimming gear with the hopes that we can have some time in a pool. Also, we found a wonderful resource in Colorado: a place that sells used adaptive equipment for a very low price. We bought a pediatric reverse walker like the one Gwyn uses at home. So she will have that to walk around with at my parent's house.

Looking forward to a great vacation!

Test Results and Conversations

We have received the results of all the tests they did from the blood drawn two weeks ago.  Everything is good!  Gwyneth is negative for Celiac, the Thyroid panel was in normal range, and the Chromosomal tests confirmed Trisomy 21 but did not show any other genetic issues.  So we have checked those things off our list to think about for now.

Before her surgery, Reid took Gwyn to the pediatric neurologist to have another X-ray done of her spine so she could be cleared for anesthesia.  Last July, her C-spine X-ray showed possible Atlanto-Axial Instability which puts her at risk for a spinal cord injury.  So activities such as gymnastics, hippotherapy (horseback riding), and being put under general anesthesia can be dangerous because of the risk to her spine.  But good news: this recent second X-ray showed that the gap between vertebrae was small enough that the neurologist said her activities do not need to be limited.  We are so excited that hippotherapy and maybe gymnastics could be in her future.

Gwyneth is now back to "normal" again after her tonsil surgery.  We have not been back to therapy yet, but we are going tomorrow.  She is better than normal really because she seems very active and much more vocal.  Reid noticed very soon after the surgery that her voice seemed easier to understand.  I think she is talking more in general, but she also seems to be enunciating better.  I don't know if this is related to her tonsils and part of her adenoids coming out, or if it is coincidence.  But with all of the new speech happening, we have been having some very cute and funny "conversations" with her:

Gwyn (waking up): "Go school today?"
Mommy: "No, there's no school today."
Gwyn: "Okay, watch George" (meaning: Allright, I'll just watch the Curious George show!)

Mommy (just before dinnertime): "Gwyn, do you want to eat some vegetables?"
Gwyn: "Mmm hmm, chicken dip-dip ketchup" (meaning: Yes, and chicken nuggets to dip in ketchup)

Gwyn mentions something about "School" (doing the sign language for School)
Mommy: "Gwyn, do you like school?"
Gwyn: "Yes"
Mommy: "What do you do at school?"
Gwyn (thinks for a few seconds): "Paint!" (adding the sign for Paint)

(At the grocery store check-out)
Check-out Girl to the kids sitting together in a cart: "Hi there"
Ryker: "Hi!"
Gwyn: "Hi, wanna play?"
Check-out Girl (laughing): "No, I can't play right now"

Each of these conversations was so unexpected and funny to me because she said words or concepts that I'd never heard her say before.  "Ketchup" and "paint" are definitely new words, and we've never even talked about painting at school.  She has been saying "Okay" and "Yes" a lot over last two weeks to answer questions and she really hadn't been doing that much before.  And asking a stranger a question like "Wanna play?" is so surprising.  I'm looking forward to reporting all of this to her speech therapist tomorrow who hasn't seen Gwyn in 3 weeks.

Recovering at Home

Gwyneth did really well staying overnight at the hospital Monday night.  She had an IV drip all night and it gave her a good head start towards staying hydrated while she recovers from the tonsillectomy.  I woke up when the nurse came in during the night to help with giving Gwyn her pain medicine and change her diaper.  After she was awake Tuesday morning, she was in very good spirits and talking, singing, and counting just like her old self.  Reid brought Ryker back to hospital before he went to work.  Gwyn was discharged and the kids and I headed home.

Since we've been home, things have been going fairly well.  Gwyn is drinking sips of pedialyte or apple juice and eating a little bit of food.  She gets fussier when her pain med is wearing off, so I'm just keeping up with the schedule of pain medication every four hours even through the night.  It's tough getting up at night to make her take the medicine though (it's like being on a newborn's schedule again!) so I stretched it out to over 5 hours between doses last night and she was fine.  I'll probably stretch it out more tonight so we can both get more sleep and we'll see how she does.

Supposedly Days 5 to 8 post-surgery are really tough because the scabs start to come off of the throat and it is more painful to eat and drink.  So this weekend could be a challenge.  But Gwyneth is very sweet when she's not feeling good and she just wants to be held all the time.  So we are relaxing together in front of her favorite shows with a sippy cup while Ryker crawls around and makes a mess. :-)

Hope our sweet girl is back to 100% soon!

Surgery Day

Today was Gwyneth's tonsillectomy & adenoidectomy at Children's Healthcare of Atlanta Scottish Rite hospital. Overall, she is doing really well. The surgery was scheduled for 9:20 a.m. so we had to arrive at the hospital at 7:20. We talked with various nurses, the surgeon, and the anesthesiologist before the surgery. They gave Gwyneth a codine type drug to relax her before they took her away to the OR. And she got a little bit loopy and cute, smiling and giggling at nothing.

The surgery went very well. They only had to remove part of the adenoids, not all of them, which is what we were hoping in order to avoid speech/voice issues. They checked her ears and there was no fluid so we don't have to worry about tubes. While she was under, the nurses drew blood for various lab orders we brought along. I don't like having her blood drawn unless it is absolutely necessary so this was a great chance to take care of blood work that I've been putting off like Celiac and thyroid tests. I'll post again when we get all of the results for those tests.

When Gwyneth was waking up in her recovery room after the 30 minute surgery, they gave her the doggie security blanket she brought along and that made her very happy. Then they brought her to the overnight room where Reid, Ryker and I were waiting. We took turns holding her and she was being very sweet. She even started to sip apple juice for us. Ryker fell asleep in his stroller when I walked through the hospital to get lunch from the cafeteria and he slept a while.

The afternoon was hard because Reid had to leave to go to work, Ryker woke up from his nap very hungry and Gwyn's pain medicine had begun to wear off. So the next few hours I spent balancing between fussy kids. Luckily there are TVs in the hospital rooms with lots of kids channels, so that kept Gwyneth distracted occasionally. She had stopped wanting to drink apple juice so she was put on an IV drip (which is attached to a vein in her foot). At some point she decided to pull off the pulse ox monitor from her thumb and strip off the hospital gown. She has also been telling the nurses "All DONE" before they even start their checks of her vitals. (That reminds me: this morning just before the surgery, a nurse came by and asked "are you Gwyneth?" and Gwyn quickly responded "nope!" - we laughed that she was saying "nope, not me lady, keep walkin")

Ryker was understandably fed up with the whole boring day, so I decided to leave Gwyn alone in the room to give Ryker a break and give Gwyn a chance to nap. We walked around and went outside to a koi pond for a few minutes, but I was worried about Gwyn, so we didn't stay away too long. When we returned Gwyn had thrown her pillows and covers around and didn't look happy. She wasn't thrilled with Ryker back in the room though because he was getting very loud and fussy and I could tell that she was super tired. Reid came to the rescue and left work early to pick up Ryker to take him home for the night.

Gwyn perked up after that and the nurse suggested I order some dinner for her, but by the time dinner arrived she was cranky again. After she got more pain medication and ate a little applesauce and a few bites of chicken soup with rice, she started to fall asleep. She's been sleeping soundly for a while now, and even slept through the nurse checking her vitals. They will have to wake her up at 11 p.m. and 3 a.m. for more pain medication, so it will be a tiring night... We plan on being discharged in the morning as long as she is drinking and eating.
More updates tomorrow...

Friday at the Farm: Summer Break

We are gearing up for Summer Break now since Gwyn's last day of school was yesterday! She is having her tonsils removed on Monday so she has to miss the last week of school. I let all the therapists know that she will miss next Friday and we'll see about the Friday after that. I also had to let them know that we will be visiting family and friends in Colorado for almost a month this summer! And when school starts again in August, Gwyneth will be going 5 days a week instead of four, so we'll have to change our therapy times to after school.

It's too bad that Gwyneth has to start the summer off with a painful surgery, but I believe that it will be the best for her in the long run. She had strep throat 8 times in a year and 3 of those times also had ear infections. So her tonsil surgery is early Monday morning and we will keep our fingers crossed that she has an easy recovery. She did so well after her open-heart surgery, but she was only 4 months old. Now she is 4 years old and I'm worried about the emotional impact this painful recovery will have on her.

I will be posting updates through the surgery and recovery of our precious girl.

Friday at the Farm: Whirlwind Week

This week - this whole month - is going by SO fast.

Our Medicaid (Katie Beckett Deeming Waiver) annual renewal application was due today, so I was buried in paperwork all week trying to get it done at superhuman speed. Our application surpassed 100 pages this year. Yikes. Gwyneth has had a very busy year medically, and there is much more ahead in the coming few months...

Today I left Gwyneth at the therapy center while I drove over to the pediatrician's office to pick up the Medicaid renewal paperwork that I had left there for the Doctor to sign. Then it had to be copied and sent off to the Dept of Family and Child Services. It was a whirlwind morning. When I rushed back into the Therapy center near the end of Gwyn's morning, I got the summary of the day from all 3 therapists back to back. She had a great day with all of them: working on trying to blow a pinwheel, trying a new Therapeutic Listening chip in her headphones, and being very energized with the PT activities. The discs/chips in her TL headphones are changed every 2 weeks and the OT determines which chips she will do next to try to challenge her in different areas. Right now the focus is on her vestibular sense and spatial awareness. It is a very good sign that she was so energetic during her PT session (which follows OT) and she was moving around in new ways. They said she was moving her body and arms on the swing which she's never done; she's usually very stiff.

I am so relieved that the Medicaid renewal paperwork is done. This is my third year with the Waiver, and I dread it every time, but it is worth it to get the financial aid to pay for Gwyneth's therapies and extra medical costs.

Coming up: Gwyn is scheduled to have her tonsils & adenoids removed, but there are several doctors visits that need to happen first (mainly: she has to be cleared by the Neurologist because of the AAI possibility). We finally had an appointment at the Emory Down Syndrome Clinic in Atlanta which was so helpful. More details on the Emory Clinic visit, the Neurology appointment, and the upcoming surgery in another post...

Friday at the Farm: iPad Girl

So about a week ago, Reid surprised me with a used iPad2 that he bought from someone on Craig's List.  I have always resisted Apple products, so this is my first i-anything, but I have to admit that I'm really loving it. And I'm proud of my techie husband for buying a used one, since I really don't care about having the latest and greatest thing.

As I was waiting at the Farm during Gwyneth's therapy appointments, I worked (played) on the iPad.  A mom who came in with her 6-year-old (who has Autism) began talking to me about all the great apps for kids.  I downloaded a few free apps and when Gwyn came out of PT, I showed her the apps.

Our girl is going to be an iPad girl!  She's been enthralled with the "Magic Piano" app and I love that the first song you can "play" by tapping the screen is her favorite "Twinkle Twinkle Little Star." She has also been tickled by the "Seek & Find Picture Book" app - a game where you touch the screen to activate different scenes around a Zoo.  The monkeys make her giggle every time.  I want to buy the rest of the app that has Farm and Forest options for the game.  Both of these games will help her improve her fine motor skills, hand-eye coordination, and problem-solving skills.

What apps do you know about for kids, especially kids with special needs?

Friday at the Farm: Therapeutic Listening

Yes, I'm half a week behind with the Friday post! Oh, well. :)  My excuse is that Gwyn and I both have strep again and she has an ear infection... My mother-in-law said it best to me last night that her tonsils can't come out soon enough!

Anyway, last Friday's therapy update is that I ordered and received the Sennheiser headphones so Gwyneth was able to start the Therapeutic Listening program.  Her Occupational Therapist Kacie got the headphones and tiny disc player all set up for us.  Here are the basics of our new OT endeavor:

• the specially designed headphones are "open-air" so Gwyn hears the disc, but can also hear sounds/talking around her
• the discs play music that has been altered by computers in order to help the brain and nervous system "respond" with the goal of improving skills in many areas (from posture to attention to communication and more)  More specific details can be read here: Vital Links
• she cannot have any electronic toys, TV, radio, etc going on at the same time because it would interfere with what she hears on the disc
• she listens to the disc for 30 min at a time, twice per day, preferably while doing an OT activity and not within 3 hours of bedtime (also, not while riding in the car)
• some of the activities we've done so far are self-feeding during breakfast, wooden puzzles, coloring with crayons, putting foam shapes onto wooden pegs, etc.
• it will be hard work for her since it is affecting her nervous system and trying to improve many things throughout her body - it could even regulate her digestion
• we will exchange our disc at the Farm every two weeks for the next level disc (the discs getting progressively more challenging)

I've been impressed with her tolerance of it so far, although she does a lot better if she's getting one-on-one attention from me at the time.  I tried wearing my large (non-earbud) headphones at the same time once and she was happy to see them on me.  She didn't try to pull her headphones off every few minutes like other times.  So I will wear my headphones when I can to show her my support. :)

I'm excited about this new program, but I realized that with going to full day preschool Monday to Thursday, we will only be able to do the 30 minute session once in the afternoon.  The bus picks her up at 6:45 am and brings her home now at 2:45 pm.  I plan to try the headphones right after she gets home, and hope it won't be too tiring for her.

Busy Friday Part 2: Our First Respite Night

DATE NIGHT.  One of my favorite phrases.  :)

We were so grateful to partake in our first Respite Night experience.  There is a non-profit organization called Corrigan Care that has teamed up with a local indoor play center Little Bears to provide monthly Respite Nights for parents with small children with disabilities.  They had a whole team of ladies taking care of the group of kids with special needs and their siblings on a Friday evening for a very small cost.  I was so shocked when we dropped the kids off because the respite team took over right away, putting name tags on the kids and whisking them away to play before I could even say goodbye.  I expected them to ask us a lot of questions about each kid, but they practically pushed us out the door.  I had previously filled out a packet of questions about Gwyneth, but there wasn't much about Ryker at all.  They took the paperwork, told us to put each kid's supplies in the little cubbies labeled with their names, and then said "We got it.  Go have a good time."

I hate admitting that it was hard for me to give up control like that.  But it was SO good for me.  I felt completely at ease that the kids were taken care of by pros.  Reid and I really enjoyed our fancy dinner out in Dunwoody.

When we returned to Little Bears to pick them up, they were exhausted from non-stop play, but they were in heaven.  I had bought them each a sleeping bag and packed their PJs, but I guess there was no time to settle down even though it was hours past their bedtime.  Within minutes of getting in the car, they were asleep.

We can't wait until next month's date night.  What an incredible service these organizations are providing for the special needs community.

Busy Friday Part 1: 4-Year Check-up

Last Friday afternoon, the kids and I spent a grueling 1 hour and 45 minutes at the pediatrician (Dr. H) for Gwyneth's 4 year "Wellness" check-up.  I'm starting to notice another difference between having a typical and non-typical kid.  Gwyn has a lot more medical appointments (at least 2 every month) and even the standard check-ups are much more involved.  When I took Ryker to his 1 year appointment, it was In & Out, Here's Some Shots, Bye-bye... but Gwyn gets some special treatment....

Here are Gwyn's 4 year measurements:
28 pounds, 13 ounces
35 inches
(A side note: she won't stand independently yet, so at EVERY single doctor appointment I have to tell the nurse: "Oh she can't stand yet, so you have to use the baby scale to weigh her." I can't wait to not have to say that anymore.)
She's below the 5th percentile on the typical growth charts, so the doctor and nurse had to fish for the Down syndrome chart.  They kindly made a copy for me since I only have the 0-36 month charts.  The new charts they gave me are for Girls with Down syndrome from age 2 to 18 years.  Gwyn is in about the 40th percentile for both weight and height.

They asked about Hearing and Vision screenings, which is probably standard for 4-year-olds starting kindergarten in a year or so.  I agreed we could try both.  The attempted Hearing test wasn't successful because Gwyn couldn't hold still enough.  We'll try it again at the Audiologist this year.  The Vision test was a pleasant surprise: she was very cooperative and passed 20/20.  The nurse held up pictures and pointed to each in turn, asking "What's this?"  I was so happy to hear Gwyn answer right away with the answers, even when the pictures were very tiny.  It made me so proud.

We had some new questions to answer this time, which I was hoping were the standard 4 year developmental questions because I was able to answer some of them with "Yes" or "Sometimes."  I remember filling out a 1-year-old developmental questionnaire that asked if she was pulling to stand, and she wasn't even sitting up yet.  I could have finally answered Yes this year to the pulling to stand question...hmm.  Dr. H also asked about how often Gwyn received Physical and Speech therapy.

We discussed again Gwyn starting the Therapeutic Listening program with her Occupational Therapist and she gave me a prescription for the Sennheiser headphones.  I don't know yet if Medicaid will reimburse us for this purchase, but I thought a prescription is the first place to start.  The doctor and I also talked about our upcoming Katie Beckett Medicaid Waiver renewal.  We have to reapply every year and the pediatrician has to write and sign in the application.  The pediatric group just decided to start charging a $25 fee to complete this paperwork.  Bummer, but it's worth it to get the Medicaid.  It has paid for medical appointments, adaptive equipment, and therapy for Gwyneth.

Then they did a CBC blood test, which I just had to look up to remember what it was... It stands for Complete Blood Count and it measures white blood cells, red blood cells, platelets, etc.  The pediatrician offered this test because there is a higher risk of leukemia for kids with Down syndrome.  They took blood from Gwyn's finger to do this test, which she screamed about and was even acting mad at the band-aid wrapped around her finger.  They had the results quickly and the pediatrician gave me a printout.  I really don't understand all of the numbers, but some were just below or just above the "normal range" and these items were highlighted.  Dr. H did not feel that there was anything to be concerned about because nothing was too far outside the normal range.  Out of 17 things measured, 4 came back "low" and 3 "high" but 10 are "normal."

We discussed another blood test which I have been avoiding: the Thyroid blood test.  I declined it again this year because it requires blood from a vein, and we had a bad experience with a pediatrician's office trying to find Gwyneth's veins.  It took 4 different people and many many pokes in both Gwyn's arms.  She just has very small veins and I don't want to put her through that again.  So I mentioned that she has an appointment with the Emory Down Syndrome Clinic in April and I could have them do the Thyroid test.  I'm hoping that they will be more practiced at taking blood from tiny veins...

Dr. H suggested that when we go to the Emory appointment I ask them about Gwyn having a pneumonia shot.  She has already had a flu shot this season.  She checked Gwyn's eye which we were treating with drops for pink eye, and since the eye looked fine, she said we could stop the drops.  Hurray!  I also told Dr. H that I had scheduled Gwyn's surgery to remove her tonsils and adenoids.  She thought it was likely that Gwyn would be kept overnight at the hospital after the surgery.

Gwyn had to then get 3 vaccine shots, one in each arm and one in her thigh.  She handled it better than the fingerstick blood draw.  And finally our appointment was done!

Friday at the Farm: Prelude to a Busy Day

I missed my update last week because I was recovering from a bad case of Vertigo which started March 4th and is still not completely gone.  My mom came to Georgia to take care of the kids, so she drove us last Friday to Gwyn's therapy appointments.

This week Gwyneth has antibiotic eye drops to deal with because Pink Eye has been going around.  She is just in between the baby/toddler stage of not understanding what is going on, and the kid stage of understanding enough to know that I want her to hold still for the eye drops.  This means there is a lot of squirming and shouting "no!" from her, a lot of pleading and restraining from me, and a lot of extra praise "yay, you did it" "yay, I did it, good job" from both of us when we're done with 2 drops.  But she was in good spirits for Therapy and got through both OT and PT well (no Speech this morning).

We had a very busy Friday today which included Gwyn's 4-year-old pediatrician check-up and our first ever Respite Night experience, so more on those events later...

Gwyn had her 4th birthday last week, but sadly I was confined to bed with Vertigo so we weren't able to officially celebrate.  I also missed the End the Word awareness day on March 7th.
More soon...

Friday at the Farm: The Art of Hugging

Gwyneth had a short bout of crying today near the end of PT.  She had been standing at a fridge playing with magnets and was getting very tired and afraid when Leslie didn't hold onto her.  When Leslie tried to walk away to get the walker, Gwyn started crying.

She had been walking around the whole time, being challenged by Leslie to walk while holding onto less stable objects like a foam swimming noodle or hula hoop. Or to let go of one hand while walking.  This is challenging for her because she is fearful of standing or walking without being held.  Leslie said she has "mastered the art of hugging" to try to get support when she's standing.  How funny that Gwyn tries to use her cuteness to get out of PT work.

IEP Meeting Highlights

Yesterday was Gwyneth's yearly IEP meeting at school.  She has been attending the 4-day-a-week, morning pre-K class at a nearby elementary school for almost a year now.  I can't believe how much she has changed in a year.  She is still not walking independently, but we can see the light at the end of the tunnel for that milestone.  Overall she just seems so grown-up to me; like a little kid and not my baby anymore.

IEP highlights:
She will start full day class - still just 4 days per week - on March 12.  I am so glad that the teachers and therapists agreed she is ready (and that a spot opened up).  I didn't ask about the possibility that she would be changing schools next year, but they said she could go all 5 days per week when school starts up again in August.  I heard that another special needs pre-K class has been created at the elementary school we are now zoned for, so she might be moved over the summer.

PT - New goals include standing independently for 5 seconds, pulling herself up into her walker, and walking with only one hand held by an adult for 10 feet.

OT - New goals include drinking from a cup, holding a writing utensil with tripod grasp, and placing beads on a string.

Speech - Goals include stating her name and age when asked, answering simple questions accurately using 1-2 intelligible words, answering yes/no questions, and verbalizing her wants and needs using short sentences.

Friday at the Farm: New Speech Therapist

Gwyneth spends Friday mornings at a therapy center called McKenna Farms.  They have many horses here used for hippotherapy for some of the kids.  They also have the therapy building (a converted house) where Gwyneth receives Speech, Occupational, and Physical Therapies to supplement what she receives through her IEP at school.  Our Speech therapist had a baby a couple weeks ago so we started with a new therapist today.  The schedule has worked out that Gwyneth now has a 2.5 hour solid block of therapy on Friday mornings: 30 minutes of Speech, 1 hour of OT, and then 1 hour of PT.

So today Gwyn met with our new Speech therapist, Lisi, for the first time. She will continue the goal of helping Gwyn put together her own short sentences to express what she wants. Lisi pointed out that Gwyn puts her tongue between her lips when saying some sounds so she will work on some Oral Motor therapy to change that.  I think that will also really help with Gwyn's struggle to drink from a cup.

With the OT, Kacie, today Gwyn tried out the wiggle car.  She has issues with her vestibular sense (sense of balance, etc.) which is part of the reason why she is not walking yet at age four. It was great that she was willing to sit on the car and move around a little bit.

With the PT, Leslie, she continued building up her walking strength and comfort level using a different type of pediatric walker.  At home and school, she has become very comfortable with her reverse pediatric walker, which looks like this:

In both the OT and PT areas, we are really working on challenging Gwyn to be comfortable with standing and moving on her own without any support around her trunk from an adult or equipment.

New Blog!

This blog is a spin-off of my first blog "A Place in the Sun."  I've decided to make that blog private for family and friends as a place to post family updates and pictures.  This new blog will be my focus on my daughter Gwyneth, who happens to have Down syndrome, and how that affects our day to day life and thoughts.