A Place in the Sun

Simplify!

2012-01-30T00:05:00.002-05:00

This found me at just the right time!

From http://blog.kanelstrand.com/p/take-simple-living-pledge.html:

What is Simple Living?

Identifying what is most important for you and eliminating everything else.
Freeing up time for doing what inspires you and being with the people you love.
Decluttering your mind, your everyday life and your virtual life.
Single-tasking and learning to diminish stress.
Striving to live frugally by wanting less and buying only what is necessary.
Slowing down and being actively present in the moment.
Living a healthy life, including cleaning your home and your body, eating, exercising and thinking.
Striving to be green and sustainable as much as your surroundings allow.
Enjoying the simple pleasures of life.
Simplifying your goals, tasks and expectations.

Come February 1st, we are starting a Simple Living Challenge on the Kanelstrand blog. Together we will take 3 weeks of simple living where we will discuss different aspects of simple living and will challenge ourselves to see our simple decisions through! You are welcome to participate with insights, advice or sharing your general thoughts on simplifying.

Happy New Year!

2012-01-12T23:08:00.000-05:00

I can't believe it's been 2 months since I have posted. The holidays went by in a whirlwind and now it is 2012! And I'm ready to have a productive blogging year. I don't really like to make resolutions (because they are doomed to be broken) so I will simply set some goals!

Down Syndrome Awareness goals:
-My general goal is to post more often to the blog and "reblog" my items on other social sites to bring more people here to my central hub!
-I want to volunteer to become a First Call Ambassador or Parent Liaison with the Down Syndrome Association of Atlanta.
-I want to get a local parent networking group organized for the Paulding county/ West Cobb county area.

Family/Home goals:

-Finish, finish, finish the projects we have started in the house!
-Find a way to take a nice long summer trip to Colorado so the kids can spend a lot of time with extended family and friends.
-Get my Craft Room in tip-top, ultra-organized shape.
-Cook more!

ME goals:
-Write more, read more, socialize more, play more, sleep more....
-Find a way to join Reid on a trip to Europe minus the kiddos!
-Make my Etsy store a priority. Hopefully make some money. :)

But first, I will catch up with some holiday photos, etc, and other Down syndrome tidbits I've been wanting to post. AND we are headed next week to Colorado for my brother's wedding!! It will be beautiful. I can't wait to be back there again.
Cheers to the beginning of a great new year!

A Fun Weekend!

2011-11-09T18:27:00.000-05:00

Sadly, after Halloween last week, Ryker and I both came down with strep along with Gwyneth! But we got better quickly with antibiotics. ;)

On Thursday, Ryker took two little crawling steps forward while I was on the phone to Reid (who was in Paris)! It was very exciting. Later that day he crawled a few more steps and then pushed himself back up to sit! So proud of himself:

Ryker has continued improving his crawling every day since then and now he's moving all over the place! I can't believe how fast it happens. Video footage coming soon..... :)

Reid returned from Paris Friday night and my best friend from Colorado came to visit for the weekend! On Saturday we all went into Atlanta to the Botanical Gardens. It was a beautiful fall day!

Gwyn enjoyed the giant leaves that had fallen everywhere. She also loved the model trains that were set up. The Botanical Garden was preparing the whole place for their holiday display. I imagine it would be beautiful to see all the Christmas lights at night!

We also got to experience some tropical plants and tree frogs in the conservatory.

Gwyneth loved this frog statue ;)

I had a very fun time with Renee visiting and I miss her so much already! Can't wait until we go to Colorado next January!

Opting Out of Halloween

2011-10-31T22:19:00.000-04:00

I'm having a little pity party for myself tonight. :( Reid is traveling for work and the kids have been sick all weekend. Gwyneth was much worse today so I took her to the doc and sure enough: strep again! Twice this month. 3 times in 2 months.... I feel helpless to protect her! She was so miserable today.

And we missed all the Halloween activities. We didn't go to the Fall Festival at the Therapy (Farm) Center on Saturday. She missed school today. There was no dressing up in costumes for either kid; Ryker's first Halloween was non-existent. I was going to take them trick-or-treating at our Publix grocery store this afternoon, but instead showed up with them to buy Gwyn's antibiotic prescription from the pharmacy and felt pathetic watching all the cute kids running around in costumes while we moped around the medicine aisles.

And tonight I was alone to get the kids in bed, so I opted out of answering the doorbell for trick-or-treaters. I put a chair in front of the door with a bucket of candy and a sign. It was actually a great relief to avoid that part of Halloween. Our dogs go crazy when the doorbell rings, Gwyn's room is right above the entryway, and I would've been very stressed about it.

Not a very optimistic way to end the 31 for 21 blog month! Sorry! Okay, I can do better ---> What I have to look forward to this week:
-Gwyn will be feeling better soon with the antibiotic.
-Ryker (fingers crossed!) hasn't caught strep yet.
-Reid comes home Friday.
-Also arriving Friday and riding home from the airport with Reid is my best friend Renee, visiting for the weekend from Colorado!
-A weekend forecast of Sunny and 65 degrees.

:) Much love to all our fellow T21 families this October! I have several Down syndrome advocacy tasks on my To Do list for November so I will be blogging again soon!

Nap Time?

2011-10-30T23:35:00.000-04:00

Poor Gwyneth is sick again, but despite being exhausted from this latest cold, she is still refusing to nap in the afternoons. But the common cold got the best of her yesterday when she passed out in front of the TV holding her cup of Pedialyte (which I was bribing her to drink all day!):

Language Building

2011-10-29T22:22:00.002-04:00

There are a few things that have really helped Gwyneth increase her spoken vocabulary in the last year (besides Speech Therapy and Preschool).

1. Watching Signing Time videos.
We started with Baby Signing Time when she was just an infant. You can see her first signs here. She has all 4 videos completely memorized, but the exciting thing is that she now signs and SPEAKS all of the vocab words and improves her pronunciation every time.
We now have two of the regular Signing Time videos and she LOVES them. I'm planning on ordering a few more DVDs to continue building her vocabulary.

2. Watching other shows like Kipper and Sesame Street.
I think the helpful part of these shows is that the vocabulary is put into context for her. Gwyneth enjoys the little stories and learns how to use the words she knows in conversation. She repeats these conversations with her imaginary friends. She pretends each of her hands is a character and they "chat" back and forth.

3. Reading books.
Some days the only book we get around to reading is her favorite bedtime book: Twinkle Twinkle Little Star by Kate Toms. But this book is wonderfully cute and artsy and has taught her a lot of new words. She likes to read along with us now and is starting to say more than just the last word of each line.

4. Singing kid's songs.
Gwyneth has an amazing repertoire of songs already that she loves to sing. She sings nursery rhymes, songs we make up, and any songs that are played by her many musical toys. She memorizes them quickly and practices a lot! She doesn't mind repeating a song over and over and over again. Practice makes perfect right? :) Sometimes I sing along with her toys to help her sound out the words better. I don't think she understands all of the words in these songs, but listening to her improving her pronunciation with many different sounds and clearly singing 2 or 3 words together is great!

Drive-Thru Talker

2011-10-28T22:22:00.001-04:00

Because I have 2 non-walkers and getting them out of the car is a hassle, I am a frequent drive-thru customer (most often Starbucks)...and Gwyn has picked up a funny habit because of this. I drove through Wendy's today to get myself lunch. As soon as I finished ordering, Gwyn yelled "Thank You!" from the backseat. We pulled up to the window and she said "Hi!" then "Bye-bye!" as we moved to the second window. After I was handed my food, she yelled "Thank you" again. Such a polite girl!
Oh also, because it was around 2:15pm (the end of the school day), I heard "Look BUS!" every few minutes.
:)

Crawling vs. Scooting

2011-10-27T22:17:00.000-04:00

Gwyneth is crawling on her hands and knees very well now...when she wants to. She army crawled FOREVER, but now she either does a regular crawl or the dreaded "Scoot." Around 1,000 times a day, I say "Gwyneth, NO scooting. Crawl please!" It can get quite frustrating.

Caught mid-scoot!

Look at the smile while I tell her "No!" What a stinker!

Meanwhile, Ryker is getting closer and closer to crawling. Here he is starting to pick up his belly about a month ago:

So determined!

Two weeks ago:

I think Gwyneth is going to be so surprised when Ryker gets mobile and can start crawling away from her...or after her! It will be a lot of fun to watch them together. :)

Self-Feeding with Spoon

2011-10-26T23:30:00.000-04:00

Gwyn is getting really good at feeding herself with a spoon. I don't work on this with her enough though. It's hard to find the time (and the patience to deal with the mess). ;)
Cheerios with milk:

Spaghetti:

Ate almost the whole plate-full by herself tonight!

Gifts

2011-10-25T23:21:00.000-04:00

A while after Gwyneth was born I entered a stage where I wanted to read about other moms with babies who were born with Down syndrome. I couldn't get enough of hearing about first-hand experiences. That's how I discovered the blogging world and many of the books I've listed in "my Ds library."

This is must-read: GIFTS

Gifts is a collection of short essays from dozens of moms. It is one of the best books to read as a new parent of a baby with Down syndrome because it has many different perspectives and stories. Some you may relate to and some you may not, but they are all worth reading.

Memory Monday: Last Year's Buddy Walk

2011-10-24T20:32:00.001-04:00

Last year was our first Buddy Walk and I forgot to post the link to the DSAA photos that were taken that day. There is a great one of Reid and Gwyneth! There are so many amazing pictures from the Buddy Walk's professional photographers.

As I was looking through the galleries, I couldn't stop smiling at all the beautiful, happy faces captured in these photos. There are parents, grandparents, siblings, and of course the self-advocates themselves - everyone smiling and joyful. Imagine what it would be like if OB/GYNs, genetic counselors, perinatalogists, and others who deliver a Ds diagnosis to expectant or new parents attended these events to see first hand what life is like for people with Ds and their families!

Here's the link to our photo. Gwyn's shirt says "short and sweet" ;)
http://www.dsaaphotos.org/-/dsaaphotos/gallery.asp?LID=&photoID=10987772&cat=151573

VIDEO: Gwyneth Climbing Stairs!

2011-10-23T23:30:00.000-04:00

We caught Gwyn today climbing the stairs - an activity we didn't think she could do on her own yet!! It was just a matter of motivation. Today I had to take Ryker upstairs to put him down for a nap. Gwyn was whining for me, not wanting me to leave and she starting scooting/crawling after us. I went upstairs, put Ryker down and when I came back I found Gwyn sitting on the landing (halfway up the staircase)! I was shocked! I asked her "How did you do that?? I didn't know you could do that by yourself!" Then I called for Reid.

We have been helping her go up the stairs for about 5 months now. Putting one foot in position, then boosting her hips/bottom a bit. I think she's had the strength to do it on her own for a couple months now, but she just hasn't had a good reason to try. Until today!

We had to see her in action, so I waited at the top of the stairs and Reid encouraged her from the landing. I snapped some pictures and Reid took the video below. You can see my shocked face at the very end of the video. :) Yay for milestones!

Really, Another Picture, Mom?

2011-10-22T22:57:00.000-04:00

Yes, Gwyn, another picture because you are too adorable!

I thought she looked like a Dr. Seuss character this morning in this hat and socks!

Silly Doctors

2011-10-22T14:39:00.000-04:00

Well I got so wrapped up in reading new blogs yesterday for the blog hop that I forgot to do my own post! So I'll have to double up today.

There were many, many things I could have blogged about yesterday too, but I'll pick one 'silly' moment:

At Ryker's 9 month check-up on Wednesday I brought up 2 questions to the pediatrician. First about Ryker's legs: sometime between 4 and 5 months old, we noticed that his right leg seemed larger than the left. The pediatrician has looked at him at some of our sick visits and at his 6 month check-up. She has observed every time that the creases in his legs are equal on each side (a good sign) and his hips are normal. But the muscles on the right leg are just beefier. So she said it might be a tone issue with the smaller leg and she could give us a PT referral. I guess a Physical Therapist could show us how to encourage him to use the weaker leg more?

I checked that off my mental list and asked my more important second question: I needed her to write and fax a referral for the Pediatric Neurologist we want to see about Gwyneth's neck. Then the appointment was done; I could expect both referrals in the mail.

So on Friday the envelope came in the mail and I opened it to find 4 pieces of paper. 2 for Gwyneth, 2 for Ryker. The neurology referral for Gwyneth plus a copy of Gwyneth's x-ray report stating among other things: "Abnormal variability in the left the dental interval with flexion and extension suggestive of atlantoaxial instability. MRI of the spine is recommended to evaluate for canal stenosis." Scary sounding, right?

Then I read the referral for Ryker for Physical Therapy which came with a second sheet called "Physician's Statement of Medical Necessity and Services." Both pages explained the diagnosis as: "Gross Motor delay, Possible lower extremity weakness." I did a double-take when I realized I was reading this about my "typical" child. And I started laughing. Medical wording is so serious and ominous and....silly. I guess I've become desensitized to it from everything we've been through with Gwyneth.

As I was laughing I realized I probably should be upset by hearing that my 9-month-old is being "diagnosed" with a gross motor delay. He is not crawling yet and he's not bearing weight on his legs very well, BUT he is rocking on his hands and knees, moving backwards, pivoting... I don't know exactly what the typical range for crawling is, but I'm not worried at all that he is "delayed." And even if he is a little behind other babies with gross motor skills, so what? It's just silly to worry about that. I am grateful that being a parent to a child with Down syndrome has given me a relaxed perspective on my children's development. (Gwyneth crawled around age 2 and is not walking independently yet at age 3 1/2.) If I had not had Gwyneth, I probably would be taking part in the baby development race. But I'm enjoying watching Ryker achieve each milestone at his own pace and I'm ignoring the "What Your Baby Should Be Doing Now" development charts.

Having said all that, I understand the pediatrician needs to give justification for her referral for insurance billing reasons, and that's fine. I am grateful that we will have a chance to get some advice from a PT on helping Ryker even out his muscles. :)

Blog Hop on October 21st

2011-10-20T22:23:00.000-04:00

I've joined the Hoppin' for 21 Blog Hop happening tomorrow October 21st in honor of Down Syndrome Awareness Month (the 21st chosen for Trisomy 21)!

Throughout the day, I'll be visiting the other sites on the blog hop, leaving comments, finding some new blogs to follow, and hoping for some visitors of my own.

Let's get hoppin'!

Ryker's 9 Month Stats

2011-10-19T22:03:00.001-04:00

Ryker's 9 month check-up was this morning!

Here are his stats:

Height = 28" (45th percentile)
Weight = 20lbs, 11oz (65th percentile)
Head circumference = 18.25" (80th percentile)

The kid's got a big noggin!

For Parents of Kids with Special Needs

2011-10-18T22:57:00.000-04:00

This list was printed in the MHDSA newsletter a few months ago (I'm still on their mailing list from when we lived in Colorado). I wanted to share it here because I think it has some very positive reminders for parents.

10 Commandments for Parents of Kids With Special Needs

1. Take one day at a time, and take

that day positively. You don’t have

control over the future, but you do

have control over today.

2. Never underestimate your child’s

potential. Allow him, encourage him,

expect him to develop to the best of

his abilities.

3. Find and allow positive mentors:

parents and professionals who can

share with you their experience,

advice, and support.

4. Provide and be involved with

the most appropriate educational and

learning environments for your child

from infancy on.

5. Keep in mind the feelings and

needs of your spouse and your other

children. Remind them that this child

does not get more of your love just

because she gets more of your time.

6. Answer only to your conscience:

then you’ll be able to answer to your

child. You need not justify your actions

to your friends or the public.

7. Be honest with your feelings.

You can’t be a super-parent 24 hours

a day. Allow yourself jealousy, anger,

pity, frustration, and depression in

small amounts whenever necessary.

8. Be kind to yourself. Don’t focus

continually on what needs to be done.

Remember to look at what you have

accomplished.

9. Stop and smell the roses. Take

advantage of the fact that you have

gained a special appreciation for the

little miracles in life that others take for

granted.

10. Keep and use a sense of humor.

Cracking up with laughter can keep

you from cracking up from stress.

author unknown

Memory Monday: First Days

2011-10-17T22:59:00.001-04:00

It's getting very hard to remember exactly what it felt like in those first days after Gwyneth was born. She spent only 6 days in the NICU before we brought her home, but it seemed like an eternity. Here I am with my parents gazing on 3-day-old Gwyneth in her NICU cubby.

She had the "Polar Bear Room" which was just the area of her hospital bassinet, a rocking chair, and some medical equipment. It had a curtain that could be pulled around the small space. We were only allowed to have 3 people in the NICU at a time so Reid and I could not be in the room at the same time as either set of grandparents. We had to take turns escorting them in to meet their granddaughter. She was our first child, both our parents' first grandchild, and the first great-grandchild for my paternal grandmother and Reid's maternal grandmother.

If I could send a message back to the person I was in those first days, I would want to tell myself:

"Smile. It's going to be okay soon. Enjoy your new baby girl for what she is: your first baby, your first daughter, your first chance to be a Mom. You will have many happy times with this little girl that will make up for any struggles that you face together. Because she has Down syndrome, she will have some unique challenges in her development, but she will also do many typical toddler things like saying 'No!' with a smile when she means 'Yes.' Falling over with giggles when Daddy tickles her armpits. Entertaining herself with dramatic conversations she makes up for her imaginary friends. Singing and dancing not only with kid's songs, but 'grown-up' songs from the radio also. And she will tell you 'Ni-nite. Luv oo' when you tuck her into bed."

I think it's almost a universal truth about being a parent of a child with Down syndrome that the first days are the hardest. As we get to know our children and the new reality we live in, many of our first thoughts and fears seem to disappear. One sad thought I had in the early days after her birth was that I might not ever know what was in her mind; if she was understanding things around her, thinking her own thoughts, etc. But that has already proven to be very wrong! I know there is so much going on in her little mind already at only 3 1/2 years old. She sometimes shocks me with the connections she makes that I don't expect of her yet. I am very proud that she is my daughter, and so excited to see what her future holds in store. The difficult first days of her life are a brief stop on our family timeline. I'm so glad that we have moved on. In the beginning I cried over the fact that Gwyneth was born with Down syndrome, but I do not cry about that anymore. I might get frustrated with set-backs in her development or confused by her sensory issues, but I see it as only one part of her, and only one part of being her Mommy.

Culinary Therapy: Pumpkin Curry Puffs

2011-10-16T23:30:00.000-04:00

So last weekend, I was bummed that we had to miss out on the Buddy Walk this year because Gwyneth had strep. Also Ryker was getting several new teeth and one of our Boston Terriers scratched her cornea somehow and needs to wear a cone and have medicated eye drops 7 times a day.... Anyway, I had plans to cook some Indian appetizers for the Monday night meeting of my book club group since we read a book that takes place partly in India. So I spent time on Sunday cooking up these yummy Pumpkin Curry Puffs! The task was great therapy for me: I let myself enjoy the moment I was in and release some of my worry about my babies (dog included!) not feeling well. I'm glad I decided to take pictures throughout:

onions, mustard seeds, curry leaves

added the spices, pumpkin and peas

simmering in vegetable stock

puff pastry sheets

a good scoop for each puff pocket

Delish!

First Parent-Teacher Conference

2011-10-15T23:07:00.001-04:00

This week I had our first Parent-Teacher conference with Gwyneth's pre-k teacher "Miss Michele." She had a lot of positive things to share about Gwyn and I walked away feeling very proud of our girl. Michele reviewed the progress they've had on all of the IEP goals and told me how well Gwyn has adjusted to daily classroom life. Here are the highlights:

She is working on nesting cups. The goal is to consistently nest 5 cups when asked.
She is making progress with matching colors/shapes. The next step is to name the colors or shapes when asked.
She is working on putting beads on to a stick as a precursor to putting beads on a string.
She can repeat her name, but will not yet answer the question "What is your name?"
She loves circle time where they sing songs, and she pays attention at a typical 3-year-old level.
She is doing well with taking sips from juice boxes, but is not co-operating as much with the sippy cup. The OT has introduced her to a regular cup.
She is making progress with using utensils to feed herself.
She has not shown yet that she can draw a circle consistently (although I know she is doing very well drawing circles and lines with our private OT at the Therapy Center).
She is doing very well sitting in all of the different types of chairs around the classroom (maintaining her balance).
The teachers hold her hands to help her walk between each activity in the classroom. She also stands at a table with the PT and has taken a few cruising steps.
She has made fast progress with potty training! They are now sitting her on the potty every day and about half of the time she goes (pees). (At home she is now alerting me most of the time when she needs to poo but I haven't started sitting her on the potty routinely to see if she will pee).
They go outside for fresh air whenever the weather allows and Gwyneth enjoys the swing on the playground.
She is getting along well with other kids. She plays a lot with our friend Ethan who also has Ds and is just a little bit older than Gwyn. Michele said when she's sitting next to other kids, she will pat them nicely (this is something she loves to do to adults also - pats them and says "Hi!").

So it was a very good meeting! Michele also mentioned that she thought Gwyn would definitely be ready to move up to the full day pre-k class for next year (Fall 2012). I think I agree with that seeing how much she has accomplished since starting last March and how much she LOVES being at school. Our IEP review meeting will be in February so I'm sure we will talk about it more then.

Miss Michele also told me about a website they use to work on letters with the kids: http://www.starfall.com/. It looks like a great teaching tool and would be perfect if you had a tablet/iPhone that you used with your kids. I'd like to use the site when we start reading and spelling with Gwyneth (and eventually Ryker).

Published Research Study

2011-10-14T23:34:00.000-04:00

I was excited to see that the Brian Skotko research study we participated in 3 years ago has now published its findings in the American Journal of Medical Genetics. The article is titled "Having a son or daughter with Down syndrome: Perspectives from mothers and fathers" and the full text is available online here: http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.34293/full

I wrote about our participation in the study here: http://megansplaceinthesun.blogspot.com/2008/11/step-towards-activism.html

New Diagnosis: Atlanto-Axial Instability

2011-10-13T23:30:00.000-04:00

In July, we took Gwyneth to have her neck (cervical spine) x-rayed to screen for atlanto-axial instability (AAI). This screening is routine for kids with Down syndrome around age 3 or when they are ready to participate in certain activities/sports. We were wanting to start hippotherapy with Gwyn's Occupational Therapist. We were bummed (hmm...understatement?) to learn that the x-rays showed the presence of AAI in Gwyneth's neck. What AAI means:

looseness of the joint (too much movement) between the first and second vertebrae (C1 and C2) of the spinal column in the neck
risk of spinal cord damage if there is slippage of the vertebrae or pressing on the spinal cord from one of the vertebrae causing symptoms such as difficulty walking, neck pain, limited neck mobility, clumsiness, muscle spasms (surgery would be needed in this case)
increased risk of serious spinal cord injury causing permanent damage (paralysis or death)
child should be watched closely (for onset of symptoms of vertebrae pressing on the spinal cord)
child should be restricted from any activities or sports that can place excessive strain on the neck (hippotherapy/horseback riding, gymnastics/tumbling, trampoline, high jump, diving, swimming butterfly stroke, soccer, hockey, football, other contact sports)
precautions need to be taken if the child is to receive general anesthesia for any surgery (extending the neck backwards to insert a breathing tube may cause spinal cord damage)

Gwyneth does not have any neurological symptoms of spinal cord damage, and it is unclear how likely it is that nonsymptomatic AAI could become symptomatic. Our next step could be to get an MRI done to get a more accurate look at her cervical spine, but our pediatrician felt this was unnecessary because (1) Gwyn does not have symptoms, (2) she would have to be sedated for the MRI, and (3) MRIs are expensive.

I talked with the Down Syndrome Clinic in Atlanta and they gave me the information for a Pediatric Neurologist we could see to discuss the degree of instability in Gwyneth's neck, the pros and cons of an MRI, and exactly what precautions we should be taking. Something that I'm worried about is if Gwyneth is ever in a car accident (or school bus accident). It seems that simple whiplash could be a big concern for someone at high risk for a spinal cord injury. I even wondered if she should be wearing a medical bracelet in case there is an accident and I'm not there or conscious... :( Not happy thoughts.

Apparently AAI is present in 15% of children with Ds, but only 1% of that group develops a problem with their spinal cord. I have not yet heard of anyone we know having it though. Is there anyone out there in blogland that has had this same x-ray result??

Note: Even if a child's first x-ray at age 3 or 4 shows no AAI, it is recommended they have another screening around ages 8-10.

I pulled info for this post from:
Babies with Down Syndrome (3rd edition)
and
Medical & Surgical Care for Children with Down Syndrome

Woodbine House Books

2011-10-12T23:30:00.000-04:00

A wonderful resource for books on Down syndrome and other special needs is Woodbine House: http://www.woodbinehouse.com/

I finally ordered the updated 3rd edition of "Babies with Down Syndrome" and I'm reading it now. I received the 2nd edition of this book from the hospital when Gwyneth was born, and although it was a very good first book to read, it was outdated a bit. The 3rd edition is a must read for all new or expecting parents of a little one with Down syndrome.

Gwyneth's First October, 3 Years Ago

2011-10-11T23:59:00.000-04:00

Some of my favorite pics of Gwyneth from her first October (in 2008).

At my cousin Ryan's wedding in Philadelphia:

Visiting Aunt Brooke in D.C.:

At home with Daddy:

Shopping at Princess Paradise for Halloween:

Parading as a fairy princess at Daddy's (and Mommy's) work:

New Health Care Guidelines

2011-10-10T23:36:00.004-04:00

I want to blog more on another day about some specific health issues we are dealing with right now with Gwyneth. But for tonight I just want to share this link to new Down syndrome health guidelines that were published in August 2011:

http://www.ndss.org/index.php?option=com_content&view=article&id=70&Itemid=139&limitstart=2

No, Just Strep

2011-10-09T23:51:00.002-04:00

Well, the good news today was that Gwyneth does not have an ear infection. But the bad news is that she has strep again! Poor girl. Another round of antibiotics....

So we sadly had to miss the Buddy Walk today.

And besides that little update, I'm taking the night off from blogging! Until tomorrow...

Ear Infection??

2011-10-08T23:22:00.002-04:00

Is there any possible way to avoid ear infections?? Gwyneth had her first ear infections (both ears) 6 months ago and now it seems that every other month when she gets a cold, she also gets an ear infection! She has also had strep twice in the last 6 months. :( I don't know much yet about ear tubes, but I think we'll need to consider this for Gwyneth now.

We'll be taking her into the Immediate Care clinic tomorrow (Sunday) morning to have her ears looked at. We are bummed because tomorrow afternoon is the Buddy Walk in Atlanta so we may have to miss it! Gwyn has had a cold since last week but she was feeling better and went back to school. But today she wasn't looking very good and she had a temp of 101. I feel so helpless when she gets sick that I can't prevent these infections!

Last Therapy Home Visit

2011-10-07T23:02:00.002-04:00

An era has ended for us; the era of home visits from physical/speech/occupational therapists is over. We had our last appointment with Gwyneth's PT (Robin) on Thursday. We have seen her for two years so it was hard to say goodbye! We've decided to move Gwyneth to a PT at the Therapy Center where she gets OT and Speech. We started with Robin through the Early Intervention program which only pays for therapy until age three. But after Gwyn's 3rd birthday, we kept our appointments with Robin because Gwyneth's Medicaid coverage (the Katie Beckett/Deeming Waiver) could pick up the costs of Physical Therapy for us. We are making the move now, seven months later, because Gwyn has recently become uncooperative with Physical Therapy at home, but doing alright with PT in school. Apparently it's not uncommon that kids get to a certain age where it becomes more effective to have therapy outside of the family's home.

Our last appointment was bittersweet because while we were sad to be saying goodbye, Robin and I were so happy to witness Gwyn cruising on her own for the first time! She took several side steps along the couch without assistance, but only to get a toy she desperately wanted. She showed us that she might have the strength to do more than she lets on.

We'll see next week how she does starting with a new PT outside of the home. Hopefully this will be a boost to her progress!

Getting Used to the Park

2011-10-06T23:54:00.003-04:00

Pictures from today: Gwyn sat in the grass without complaining for the first time!

Brother and Sister

2011-10-05T21:14:00.007-04:00

A few pictures over the last 8 or 9 months of Little Brother and Big Sister getting to know each other.

After Gwyn got over his crying noisiness, she started to think Ryker was a very funny little baby.

Ryker is always staring and watching everything Gwyn does!

Gwyneth has learned about "gently" touching Ryker and sharing toys with him. She sometimes shares too much, giving him objects he shouldn't have or giving him toy after toy after toy until they are all piled in his lap.

They are so crazy about each other now! Tonight I put Ryker in his highchair facing Gwyneth while she was in her booster chair eating dinner. Ryker started practicing his clapping skills so I sang Pat-A-Cake to him. Gwyn laughed along with us; she loves this game too. Then a few minutes later, Gwyneth started clapping and trying to sing Pat-A-Cake while looking at Ryker and he started clapping with her and laughing! I love watching them interact and have so much fun together!

After posting this I had to add one more pic that I forgot! I love this one where Gwyn is tickling Ryker:

Talk Tools Honey Bear

2011-10-04T21:59:00.005-04:00

One of my "Early Intervention" links listed in the sidebar is for TalkTools.com. Among other things (see Sara Rosenfeld-Johnson's blog), they sell some great products for oral motor therapy in young kids with Down syndrome. We have gotten a lot of use out of our Honey Bear Straw Cups in transitioning Gwyneth from bottle to cup drinking.

These are great because you can start by squeezing the liquid into your child's open mouth to introduce the idea of a straw (and attempt to get some fluids in them!). Then you can practice showing them how to close their lips around the straw and by squeezing the liquid for them, they are "rewarded" before they can actually suck from the straw themselves. Gwyneth is between stages right now of being able to take sips from the straw herself and being able to continually suck from the straw. If she takes more than a couple gulps at once, she tends to choke on the drink. But she is improving all the time, learning how to control the flow of liquid.

I highly recommend these to new parents! In fact, I'm sure I will use this with Ryker soon to introduce him to straws, although I suspect he will pick it up quickly since he is already drinking from a sippy cup very well! Every kid (with or without Down syndrome) moves at their own pace, so I don't know how Gwyn compares to other kids using these cups, but we have had them for over 2 years now. As with most "therapy" things with her, we take breaks from something if she is rejecting it too much. So I usually tried the Honey Bear Straw Cup for a week or two until I felt exhausted from lack of success, then I would put it away for a while (a month or two) and eventually bring it back out to try again. I never gave up completely on it and now we're at a very good stage with it!

VIDEO: Gwyneth and the Starbucks Cup

2011-10-03T14:28:00.003-04:00

Getting Gwyneth to drink anything has always been a challenge. We've worked very hard and had off and on success with straws. We had a breakthrough this summer when I discovered that although she would shun any bright-colored toddler straw cups (even the Dora one!), she was willing to try drinking from my clear plastic Starbucks cup of water. Who could of guessed!

This little video was taken back in July and I'm happy to report that Gwyn is still drinking from these types of cups and has also finally accepted her honey-bear straw cup (from Talk Tools). She will sometimes drink from juice boxes now, but not always...

This video also shows a great sampling of her speech right now. She repeats everything!

Calling All Knitters...

2011-10-02T21:27:00.002-04:00

...Or Crocheters! I am taking part again this year in knitting scarves for the Special Olympics Winter Games! Here is the link with how to get involved if you are interested:

http://www.scarvesforspecialolympics.org/

Hello October! Hello 31 for 21!

2011-10-01T10:19:00.004-04:00

October is National Down Syndrome Awareness month, and to do my part in raising awareness, I am taking part this year, for the first time, in the 31 for 21 blog challenge.

Grab This Button

The challenge involves posting every 31 days in October. I am excited to be writing (and reading!) lots of posts. I have many, many thoughts and little happenings about our life with Down syndrome to share. I also thought I'd highlight some of the links and books that I have listed on my blog.

I'll start with a little story from yesterday:

I had both kids content in the mom-mobile when we returned home from Gwyneth's orthotics appointment (another post I could do!). Since they were content I decided to load up the 4 bins full of recycling and the stack of cardboard from the garage into the car. Our recycling plant is literally down the road from our house so we don't have curb-side pick-up. So once or twice a month we have to drive it over. There is a man who works there that I have seen most times, who must be a supervisor. The other men who help unload and sort the recyclables are usually wearing jumpsuits from the county jail...

Yesterday, as I handed over the first bin, I noticed the Supervisor Man was wearing a 2010 Buddy Walk Atlanta T-shirt. It was dusty and grimy from working that day so he looked surprised when I blurted out: "I like your shirt!" He looked down at his shirt, confused. So I followed up with: "I have a daughter who has Down syndrome." He smiled then, and relaxed into a familiar tone: "Oh yeah, my little grandson has it."

With the handing over of the next bin of recyclables, he asked me: "Are you going next week? To the Walk in Atlanta?" I said, "Yup, we'll be there." Then he added, "You might know my daughter actually: L---- A----?" "Oh yeah! I know L----! Hopefully we will run into each other there."

The emptying of recycling bins was done, so we finished with "Hope to see you on Sunday..." "Yeah, we'll look for you..."

It was an unexpected connection in the middle of an average day, but this happens all the time when you're the family member of someone with Down syndrome. I've met so many mothers or grandparents who started out as strangers, but just by speaking up to each other about our children, we can become instantly comfortable within seconds! And it's amazing when we realize we have a common friend or acquaintance like a physical therapist or doctor. It is a close-knit community and I love being a part of it!

Babies vs. Dogs

2011-09-26T07:39:00.003-04:00

On Friday afternoon, the kids each had a moment with our dogs where they asserted their dominance over the pets. :) When Gwyneth was born, we referred to her as the dog's "baby master" and now there are two little "masters" who are above the pooches in our family pecking order.

First, Gwyn decided to corner Mugo and talk to her and pet her and examine her shiny dog tags. Mugo was not thrilled with this, but obediently complied.

Then later, Ryker noticed Sofi laying near by and decided to grab her dogs tags. He got a mega-grip on her collar and pulled so with so much strength that her whole body slid towards him. It was so funny how she just submitted and let this happen.

I moved her to sit in front of him, and she waited patiently while he played with her tags and patted her roughly on the shoulder. I think she actually enjoyed the attention from him.

I can imagine sometime in the future when the kids will be leading the dogs around on leashes and giving them commands...Sit! Stay! Roll over! Gwyn already tries to get Mugo to do her tricks. She giggles so much when she sees Mugo performing a spin or playing dead. Gwyn has been trying to say "Spin!" and "Bang!" (the command for play dead) to Mugo for a while now. And she definitely understands how to reward the dogs with treats (i.e. food thrown from the highchair)!

Never Mind the Clouds

2011-09-20T23:13:00.003-04:00

We ignored the cloudy, semi-rainy weather today and went to a park to try Ryker on the swings for the first time!
Gwyn was very happy at this surprise detour from our errands. She is an old pro on the swing set. We also tried out the slide today. I can't wait till she can run around the rest of the playground.
Ryker surprised me by being frightened when I pushed him in the swing. He was very content to sit still in the swing and watch Gwyn, but he was terrified as soon as his swing moved!

I know he will love the swing eventually so we will keep trying this Fall! I love that it already feels like Fall here even though the temperatures have just dropped below 80. ;)

One of my biggest goals right now with the kids is to have many outings to parks. I want them to be outside a lot even though they aren't walking yet! One of my neighbors who also has little kids said to me last week "I never see your daughter playing outside!" and it made me kinda sad. I didn't want to explain to her that Gwyneth only just started real crawling this summer and has sensory issues which keep her from being thrilled with touching grass. It just hasn't worked out for us to spend time outside yet, but I really want Gwyneth to enjoy being outdoors.

Ryker, 8 months old

2011-09-18T20:51:00.003-04:00

Very happy boy!

Blondie!

Yellow Daisy Festival!

2011-09-13T14:07:00.004-04:00

On Friday, Rebecca and I took Gwyneth, Ryker, and her little guy Grant to the Yellow Daisy Festival at Stone Mountain Park. This is a yearly arts & crafts fair with hundreds of booths with all sorts of merchandise. It was my first time to Stone Mountain and I was very impressed. I loved how the booths were all nestled among the trees alongside the path that winds around the park. There was live music on a stage near the "food court" booths. Gwyn was very excited to dance to the music and wave at all the people walking around. She is definitely a social butterfly!

To Blog or not to Blog

2011-09-01T11:09:00.003-04:00

I have been absent from blogging, obviously, for months now. I just can't make the time to be in front of the computer (uninterrupted) for long enough to finish a post or edit videos or sort through pictures! Briefly I considered giving up on my blog altogether, and then thought about moving it to a Tumblr site where you can post pictures, etc from your phone. But Tumblr is too simplified for what I want this blog to be (it's more like Twitter or Facebook with short, frequent posts). I couldn't bring myself to delete all of the links and resources that I've gathered together over the 3 years I've had this blog.

So here's my solution: I will post on my Tumblr site daily from my mobile phone. http://megansplaceinthesun.tumblr.com/ There's also a link on the far right column. And I will keep posting here with more content and videos, etc. whenever I can find the time. :-)

Brooke's Wedding Photos

2011-06-15T16:36:00.005-04:00

Tomorrow is Reid's sister Brooke's birthday! Happy B-day B!

We recently got to see the photos from her wedding in February and they are wonderful! Here are some of my favorites from that special day:

School Bus

2011-06-06T16:52:00.004-04:00

I can't believe that Gwyneth is 3 years and 3 months old today! I also can't believe that her first "year" of preschool is done for the summer! In less than 3 months she learned so much and made so much progress in a lot of things... I'll catch up on everything soon!

One of her favorite things about preschool was riding the bus! She cried the first few days while getting on the bus (in her wheelchair), but after that she loved it and she is still asking for the bus now that school is out.

VIDEO: Ryker Talking at Ten Weeks

2011-04-11T11:19:00.001-04:00

This was Ryker "talking" to us about 2 weeks ago.

VIDEO: Gwyneth as the Flower Girl

2011-04-07T21:00:00.000-04:00

Gwyneth got to be the flower girl for her Aunt Brooke's wedding in San Diego in February. Here's the video clip! She did a wonderful job. Reid was her "helper" and did a great job too. The wedding was supposed to be on the beach, but the weather was cold and rainy, so the ceremony was moved to inside the beach house. But the sun came out just in time to shine on the beautiful event for Brooke and Joe!

Memory Monday: Family Resemblance

2011-04-04T22:00:00.001-04:00

Ryker has been reminding all of us of many different family members when they were babies. Here are some comparison photos.

Megan (with Dad Jim and Mom Beth) / Ryker (with Grammie Beth)

Reid (with Sue's dad, Grandpa Don) / Ryker (with Grandma Sue)

Gwyneth (coming home from the hospital) / Ryker (coming home)

Gwyneth / Ryker

Reid / Ryker

Aunt Brooke (Reid's sister) / Ryker

Ryker at 2 Months

2011-04-03T22:37:00.001-04:00

Two weeks ago, Ryker had his 2 month check-up and a big round of shots! But he was brave and did really well at the appointment.

His 2 months stats:

Weight 11 pounds, 9.6 ounces, 50th percentile

Height 24 inches, 75th percentile

Amazingly, Ryker is about the size at TWO months as Gwyneth was at FOUR months.

Here are Gwyn's 2 month stats:

Weight 9 pounds, 14 ounces

Height 22 inches

And 4 months:

Weight 11 pounds, 11 ounces

Height 23 1/4 inches

Turning 3 and Starting Preschool

2011-03-31T23:35:00.000-04:00

Gwyneth turned 3 on March 6th!!! We had just returned from San Diego and thought Reid might be travelling for business in early March, so we didn't have anything planned for her big day. So we decided on that Sunday to drive to a cupcake shop called Gigi's and get a mini b-day dessert. Gwyn has never been a fan of sweets, so last year Reid and I ended up eating the entire ladybug cake ourselves.
We put 3 candles in Gwyn's pink cupcake and helped her blow them out. As usual, she wasn't interested in getting messy with frosting...oh well. Maybe next year?

Turning 3 is a big deal for kids with Down syndrome these days because this is the date that their Early Intervention services end and the school district takes over. This means we trade IFSPs (goals for therapy in our home) for IEPs (goals for therapy in a public school setting). So Gwyn had her last Speech Therapy appointment at home in early March. For Physical Therapy, we have decided to keep our weekly appointments at home with Robin since Gwyn is not yet walking. The cost for these appointments will be picked up by our insurance and Medicaid. We're also looking into starting Occupational Therapy at a local place called McKenna Farms. They have horses there so eventually we could do some hippotherapy with Gwyn!

Starting public school means Gwyn has been placed in a special education preschool class. It's Monday through Thursday from 11:00 to 2:05. She is fed lunch at school, receives 30 min of PT twice a week, 30 min of OT once a week, and 30 min of group ST twice a week.

Here are pictures of Gwyn ready to go to her first day of school:

Right now I am dropping off and picking up Gwyneth at the elementary school. Most of the other kids ride a school bus. There are 10 kids total in her class and 2 adults, 1 teacher plus 1 assistant. Because Gwyn is not yet walking, she has to be in a stroller to go in and out of the school. The teachers come out to the curb and line all the kids up. The kids each hold onto a colored ring (the rings are all strung together) and they walk into school together. Gwyn is pushed in her stroller at the end of the line. We have ordered a wheelchair for her that is approved for use on the school bus. It basically looks like a stroller, but it would attach to the school bus so she would sit in it during the bus ride.

For the first couple weeks of school, Gwyn would sometimes cry when I dropped her off. But last week instead of crying, she would just get sad when I dropped her off. This week has been better. On Tuesday and Wednesday, she waved and said "Hi" to the kids and teacher and then said "Bye-Bye" to me. I'm so glad she is adjusting! I've had a lot of feedback from the teachers and therapists that Gwyn is enjoying herself in the class, especially with song time. She has already made a lot of progress learning shapes, colors and counting up to 5. Her speech has really taken off! Gwyn is also improving with mealtime. She is actually taking drinks from a sippy cup during meals now, which we've struggled with; and she is more interested in self-feeding.

The one drawback with going to school has been the germs! She caught a cold the first week, and has had a runny nose ever since. Then yesterday after she got home from school she was acting unusually fussy and I thought she was pointing to her head or ears. So I took her to the doctor thinking she might have an ear infection. Turns out she has an ear infection, sinus infection, AND strep!! So she's on major antibiotics and we'll be taking it easy for a while. She is such a tough little girl. I can't believe she waited so long to complain about her pain. I wish she had the words to really explain to me when she's sick! But we are lucky that this is her first ever ear infection.

Overall, I am very happy with how preschool has been for Gwyneth. This was a big change for her and us, and I was nervous about the transition. But it will be so good for her socially and developmentally.

That's all for now!

Is It Really the END of March?

2011-03-29T13:29:00.000-04:00

Catching up: end of FEBRUARY

We went on a big family trip at the end of February, stopping in Colorado for three days to visit family and friends and then to California for 5 days for Reid's sister's wedding!

While in Colorado, we had a photo shoot with our amazing friend and photographer Agnieszka! She took wonderful photos of us and baby Ryker.

More pictures here: http://www.abrilliantphoto.com/blog/?p=1726

Then we traveled on to San Diego where my beautiful sister-in-law Brooke got married! The wedding was so much fun and it was great for us all to be a part of it. I was a bridesmaid, Gwyneth was the flower girl, and Reid was the flower girl "helper." I don't have pictures yet, but I will post some as soon as I can. We also were able to get video of the ceremony and part of the reception. Gwyn did a great job as the flower girl and I can't wait to share the video!

We are so happy for Brooke and Joe and are thrilled we were there to see them start their new journey of married life together!

<3<3

Is It Really March?

2011-03-07T01:00:00.002-05:00

I started several blog posts in February but never finished a single one! So much has happened of course. Ryker is now 6 weeks old, we've taken our first family of four vacation, took part in Reid's sister's wedding, had a professional family photo shoot, and Gwyneth is turning 3 and about to start preschool!

Catching up: JANUARY & beginning of FEBRUARY

From this:

To this:

Our first weeks with Ryker zoomed by of course. Thankfully, I had the wonderful help of both my mother and mother-in-law the whole first month of Ryker's life. I couldn't have survived without them!

I am still working on getting used to life with two non-walking little ones. I am enjoying our new little boy so much despite being desperate for sleep! This time around, breastfeeding has been a breeze compared to the struggles I had with Gwyneth. The entire newborn experience feels very different with Ryker; easier in some ways like with breastfeeding and the absence of frequent doctor visits and medical issues and oxygen tanks; but harder in other ways like learning what to do with a crying baby (Gwyneth never cried or complained - she was so easy-going!) and figuring out how much he should/could be sleeping (Gwyn was always asleep and we had to wake her for feedings).

Even though they are very different babies in some ways, I have also been having a lot of deja vu moments where Ryker reminds me of Gwyn as a baby. Sometimes it's an expression or a little noise -especially when he's sleeping- that looks or sounds just like Gwyneth almost 3 years ago.

Gwyneth has also been trying to adjust to life with a baby brother. She has struggled with the amount of noise he makes and the amount of Mommy's time he takes up. But she is starting to like him I think! We taught her a sign for "brother" and she also tries to say the word while smiling at him. Her speech abilities have exploded over the last month! She's been adding more and more word approximations to her vocab every day. More on her progress later...

Some pics from Ryker's first month:

It's A BOY!

2011-01-24T21:39:00.003-05:00

We are so happy to announce that our bundle of joy arrived last week and it's a BOY!

Ryker Jonathon Maulsby

born January 18th, 2011

at 3:44 AM

9 pounds, 2 ounces!!

20 inches long

about his name:

Ryker: Danish (form of Richard)- strong power, hardy power; Dutch (related to Middle Dutch word "riken")- to become powerful, to become rich

Jonathon: Hebrew- gift from God

(Reid's middle name)

Coming soon: more pictures and details about his birth and our first days/weeks when I have a little bit of sleep to help me think straight. :)

Catching Up: Pregnancy

2011-01-05T09:10:00.002-05:00

Well, I've officially made it farther in this pregnancy than I did with Gwyneth! I am 38 weeks and 3 days. 11 days before my due date of January 16th. Gwyneth arrived 11 days before her due date almost 3 years ago!

We thought for sure that labor would start this week, but I'm glad it didn't because I was dealing with a long drawn out cold that was making me miserable! I'm finally feeling better after 2 weeks of being sick. And I've finally had some decent sleep the past two nights.

The baby is very very low now so I'm expecting it to happen anytime! The crib and diapers and baby clothes are all ready. Our bags are packed for the hospital. And my mom has arrived to stay with us for the whole month of January!

The anticipation of meeting our second baby and finding out if it's a boy or girl is so exciting! Reid and I were talking about our decision not to find out the gender of the baby this time. We do think that because of our surprise with Gwyneth, we've tried subconciously not to have a lot of preconceived ideas and expectations with baby #2. When you are pregnant, especially for the first time, you do lots of daydreaming about who your baby will be and what they do in the near and far future. When Gwyneth was born with Down syndrome, we were in shock and felt we had to erase all of our expectations for what she and her life would be like.

I've realized that in this second pregnancy, I have not let myself daydream about this child's future. I haven't thought beyond the newborn stage. It's strange to realize that we've been so cautious to get attached to any set expectations, but I suppose it's a bit of a defense mechanism on our part. But on the bright side, Gwyneth has surprised us many times over the last few years by exceding our expectations for her! And I think any child does that for any parent. :)

More updates on December events and holiday pictures coming soon...if I get the chance! :) Happy New Year

Catching Up - PT

2010-12-09T17:02:00.000-05:00

I have so much news to catch up on from the last few weeks, it will take multiple posts! First: exciting PT updates.

Last month, Gwyneth had an amazing Physical Therapy appointment. She made some sort of breakthrough mentally and did a great job in everything we tried. Just before the appointment started, she decided to crawl over to the fireplace and pull up to her knees. She did it again in front of the Physical Therapist (Robin) when she arrived.

Then we worked on her confidence with sitting on a cushion and leaning forward to pick up toys. In the recent past, she has been very nervous and unsure about sitting or standing without a lot of support on her trunk. But on this day, she did a great job and wasn't scared at all and was actually having fun picking up blocks off the ground and putting them in a container.

THEN we tried standing at her V-tech walker where she has always leaned her stomach against the bar and rested her arms on the top of walker. But this time, she held onto the bar with her hands and didn't "cheat" at all by trying to rest her belly on it! Robin and I were so surprised. This was the first time Gwyneth has stood almost completely unsupported! She also let us move the walker and she took a few steps while only holding the bar.

It was wonderful to see Gwyn finally have some confidence with standing and to finally enjoy it! In the past month, she has gotten more and more confident with pulling up to her knees, with standing, and with trying to walk. The most exciting improvement is that Gwyn has started to bend her knees and take steps when we support her with walking. I need to post a video we took of this impressive accomplishment!

All the improvements she's been making have caused some rapid changes in the special equipment we have for her. She has been doing the pediatric stander for an hour at a time, twice per day and she loves it (this is her TV time):

But now that she's built up so much strength in this very supported standing position, we need to move her to standing in less supported position to continue building her muscles. So she has been fitted for a Benik Trunk Orthosis made from Neoprene. It basically looks like a surfer outfit! It has a vest section and a lower body section that wrap around very tightly and secure with Velcro. She's not a huge fan of it yet, but we're trying to work on replacing one of her pediatric stander hours each day with an hour in the Benik suit. Eventually we might have her wearing it 5 hours a day!

Another new piece of equipment that we are borrowing from our Early Intervention program is this Pediatric Reverse Walker:

Gwyneth stands in it so the bar is behind her and she holds onto the red handles. Then she can take steps forward and the bar behind her bumps her to encourage her forward. We still have to hold her while she's "walking" in it, but she is getting more used to it every day. I can't wait until she will hold herself on her own and really start walking!

Now that she is moving her legs and trying to take some steps, we are working on getting new leg braces for her. Her current orthotics are solid AFOs which hold her foot, ankle, and calf in a firm position so she cannot bend her ankle. To take steps, she needs a little more freedom in bending her ankle but she still needs to be supported. So we had an appointment this morning to get her casted for new orthotics called Bilateral SMO/AFOs... I'm not sure yet exactly how they will work or what they will look like, but I believe they have two separate parts and are more flexible. We will be going back in for the fitting just before New Year's.

More updates soon...

Miscellaneous Funny Road Trip Pics

2010-11-17T23:15:00.004-05:00

We had a great time piling into the minivan for our road trip to and from Savannah and Hilton Head. We got a kick out of seeing "El Cheapo" brand gas stations around:

Gwyn was very happy to get out of the car when we arrived at our Savannah hotel. She immediately fell onto the bed and pretended to snore. Then she posed and smiled and laughed for the camera!

My mom and I entertained ourselves in the back of the van by knitting some scarves to donate for Special Olympics athletes in Georgia:

And Gwyneth entertained herself by having many hilarious and lengthy and LOUD conversations on her "phone":

Hilton Head

2010-11-17T22:42:00.002-05:00

On our last day of vacation on the coast, we drove from Savannah to Hilton Head Island where we spent a quick half day checking out the beach and other sites. We had lunch at the Salty Dog Cafe which was excellent! Then we drove home to Atlanta.

By far, our favorite thing about our short time in Hilton Head was the beach! It was SO beautiful and Gwyneth was SO excited to get her feet dipped in the ocean waves. We can't wait to plan another trip to actually stay and spend time at the beach there!

More Savannah Sightseeing

2010-11-17T21:18:00.015-05:00

Here are the rest of our pics from our last day of sightseeing in Savannah, GA.

We toured the impressive home (and beautiful courtyard) of one of Savannah's founders:

We had a wonderful British lunch at the Six Pence Pub:

Then we walked through the amazing Cathedral of St. John the Baptist:

Savannah Plantation

2010-11-08T15:50:00.010-05:00

There aren't really any preserved plantation homes to go and tour because in the Civil War most of them were set on fire during Sherman's "March to the Sea" from Atlanta to Savannah. But there is the Wormsloe Historic Site in Savannah which was really worth the visit! There is a 1.5 mile oak lined drive that is just breathtaking. The Spanish moss hangs from the live oak (evergreen) trees that were planted over 100 years ago from seeds. There is also a small museum and the ruins of the colonial estate of Noble Jones, owner of Wormsloe Plantation and one of the first settlers of Savannah.

We came to tour Wormsloe early on our second full day in Savannah and it was amazing! The weather was warm and very humid, and the place was very quiet and peaceful to walk through. It had a more tropical feel than I was expecting.

Savannah Trolley Tour

2010-11-07T23:39:00.009-05:00

On our first full day in Savannah, we opted to do one of the trolley tours.The trolley runs around the historic areas of Savannah while the drivers explain the landmarks. Some of the drivers were very talented narrators and really made us laugh! We had a big surprise when our driver spotted Forrest Gump (a look-a-like actor who was dressed exactly like Forrest when he was waiting for the bus with his suitcase in the movie) on a corner of the Savannah park where some of the movie was filmed. He looked just like him in his khaki pants, red baseball cap, and tennis shoes. And his voice and mannerisms were just like him also! It was hilarious as our driver was yelling to help "Forrest" and he was yelling back and then frantically running away through the park with his suitcase. "Run, Forrest, Run!" Everyone on the trolley was cracking up. :)

The trolleys make frequent stops around town where you can get out and spend time in one area, then get back on at the stop when another trolley comes around. We had a lot of fun doing this and even stopped for lunch at Paula Deen's famous Southern "don't-forget-the-butter" restaurant, Lady and Sons.

Of course our wonderful Gwyneth was a very cooperative

sightseer, especially as we stayed out way past naptime. She was so worn out! As soon as the trolley took us back to the car and Gwyneth was put into her carseat she was fast asleep. :)

VIDEO: Savannah Street Music

2010-11-05T09:43:00.003-04:00

Walking along the Savannah riverfront, we heard some street musicians and were drawn in by the music. Gwyneth loves music and she was in awe of this live perfomance. I tried to capture some video clips of her excitement and dancing!

Savannah Riverfront

2010-11-05T09:27:00.003-04:00

On our first evening in Savannah we ate dinner and walked along the riverfront, enjoying the cobblestone roads, the water views, the warm humid weather, the street musicians, and the Southern charm.

October Pumpkin Fun

2010-11-04T14:15:00.007-04:00

I still have a LOT of pictures to catch up on from October! For the last week in October, my parents from Colorado came to visit us in Georgia. We went on a road trip to Savannah and Hilton Head and such a fun time!

Before we left Atlanta, we visited a pumpkin patch to buy a couple to display on our porch.

Then when we were in Savannah, walking along the river, we saw many stores that had created fun Fall displays in front of their shops. One place had a gigantic pumpkin -probably 3 feet wide!

We took all of these opportunities to shoot lots of photos of course.

The last picture of Gwyneth with the gigantic pumpkin is my favorite funny photo. She was making lots of funny faces with her grandparents all week and this "scared/shocked" face is a big hit so she does it all the time! For this picture in front of the giant pumpkin, she had an audience of strangers joining in to see her funny face. She is definitely not shy!

Our First Buddy Walk

2010-10-31T22:36:00.007-04:00

October was National Down Syndrome Awareness Month! We participated in our first ever Buddy Walk since Gwyneth was born.

It took place in Marietta, Ga, right around the square. This event is put on across the country by local DS associations. It's a way to raise money and awareness for Down syndrome groups.

We had a great time seeing the friends we've met here in Georgia and meeting some new families that I've been talking to through emails only so far. We are planning another playdate get together!

After the music and activities in the square, the walk began and at the end, Gwyneth received her very own Buddy Walk metal! :)

We're looking forward to getting to know our new friends better. And next year, we will try to form a group in Gwyneth's honor and do some fundraising of our own!

Dog Art by Reid

2010-10-24T00:12:00.003-04:00

Reid got a new cell phone for work this week which has a camera, so of course he is glued to his new technological toy.

Here is his artistic take on our adorable pooches:
Sofi

Mugo

Cold Turkey Update...

2010-10-23T23:51:00.002-04:00

A little update on our Cold Turkey Plan for Gwyn and her bottles. She has fully accepted the trainer cup (still without the handles) as her new "bottle" for her evening milk. Which is great! BUT, she refuses to have any juice or water in that bottle or any other type of cup... I even tried putting juice in her old type of bottle as a last resort, but she only drank half an ounce. So I am struggling with having to force sips of fluids into her mouth with a straw whenever I can. I think it's just a stubborn reaction she's having to the whole process. Unfortunately, she is now very backed up poop-wise. :( And we are leaving for a road trip to Savannah with my parents on Monday! Hopefully this girl can get hydrated and regular very soon because I hate to see her struggling to go potty.

Cutie with Daddy

2010-10-23T23:36:00.003-04:00

I'm really behind on posting pictures for October! I'll try to catch up this week.

Here was a precious moment with Gwyn and her Daddy:

Cutie in New PJs

2010-10-13T07:43:00.003-04:00

I stocked up on Fall/Winter PJs for Gwyneth when I found some on sale at the Gap. She looks so cute, I couldn't resist snapping some pictures when she first woke up.

This is the happy little girl that I wake up to every day!

Cold Turkey Day 4

2010-10-06T21:49:00.003-04:00

We've taken a drastic new approach to Gwyneth's bottle addiction and cup phobia: cold turkey!

Reason 1: She's been regressing in her straw usage.

I have been hoping for a long time to transition Gwyn from drinking milk in a bottle to a straw cup instead. Gwyn learned how to drink from a straw quite a while ago, but would only take sips and would never drink a significant amount of water/juice/milk from a straw. Sippy cups have been refused by her for a long time. Recently she's started to refuse straws - first juice boxes and now most of the time her honey bear straw cup as well. We've resorted to putting a thumb on the end of the straw and dropping sips of water into her mouth.

Reason 2: We've been taking the easy road and offering more bottle nipples for juice.

Gwyn still has been drinking about 8 oz of whole milk in a bottle before bedtime. This is her main source of fluid for the entire day. Because she's almost stopped using straws for sips of water or juice, we've been giving her (at snack time) the 4 oz Gerber juice (and yogurt juice) bottles which are the perfect fit for a bottle nipple. This way she was at least getting some fluid during the day. This has become a habit for us because it's a guaranteed way to get her to drink 3-4 oz of liquid at a time.

Reason 3: I found a new type of "trainer cup" at the grocery store four days ago.

I found the Born Free brand trainer cup that seemed like a perfect transition away from a regular bottle nipple. It has a soft spout that sticks out farther. It has a low vacuum valve that makes it easier to suck and lessens possible ear infections. And the handle is removable so it can look more like a bottle than a cup to Gwyneth. So Reid and I decided to try this new cup/bottle and never again offer her the regular bottle nipples for milk or juice: cold turkey!!

The first night, we offered Gwyneth's bedtime milk in this transition cup without the handles. She drank for about 30 seconds, then signed "all done" and was angry when no other bottle of milk was offered. She went to bed without an alternative. So sad!

The next day, I offered her the cup with milk during the day and she refused it. That night she also refused it, was very angry not to get her regular bottle, and went to bed without drinking anything. Probably harder on Mommy than on her!

Yesterday, I poured her Gerber yogurt juice (which she loves) into the cup for an afternoon snack (instead of using a nipple on top of the Gerber juice bottle). She drank for about a minute than signed "all done". That night I offered her the cup again, but she wasn't interested. She again went to sleep without her usual nighttime 8 oz of milk.

The cold turkey approach has been awfully difficult, but I think it is proving necessary. We had our first breakthrough tonight on Day 4.

All day today I was feeling bad about her not having very much liquid for 3 days. She is constipated again, and I feel so much guilt over that. I tried to give her the new cup in the afternoon and she refused it. All I could think about was how if I gave in on our Cold Turkey Plan and offered her juice with a bottle nipple, then she would be getting much needed fluid right away. It's also hard to have her be so angry with me. It's much easier as a parent to make the choice that you know your child won't fight you on. I almost gave in and Reid almost let me when he saw me crying from worry and frustration.

But tonight, there was a possible breakthrough: before bedtime I gave her the new cup with whole milk. She took it and drank and chewed on the spout off and on for probably ten minutes! She ended up consuming about 3 oz of milk. We were so happy that we didn't give in. We are definitely committed to the Cold Turkey Plan now. I'm going to buy more of these cups so I can offer juice and water and milk several times a day for her. And I will still offer the honey bear straw cup and occasionally juice boxes at mealtimes.

I'm sure that she will still refuse the cup sometimes. And there will probably be more nights of going to bed without drinking anything, but at least we saw a glimmer of acceptance from her for this new way of drinking. Eventually we can add the handle back on the cup...but I don't want to get ahead of myself! Small steps are fine.

Sweet Moments

2010-09-28T14:03:00.002-04:00

Gwyneth always makes my heart melt with the little sweet things she does even when she's not feeling 100%. I don't think I'll have any trouble explaining what a "silver lining" is to her when she's older!

Today, I was expecting another cranky day from her. She has been extra tired lately, but having trouble falling asleep. She just hasn't been feeling the best (constipated, probably having a growth spurt, and I think maybe getting some molar teeth). And we had PT this morning which she hasn't been enjoying lately. But PT went alright considering her mood. Probably because we took it easy on her, not wanting to push her too far. But by the end of the PT appointment she was giving me the "sleepy" sign and I was worried we'd have another rough couple of hours (as in the past week around lunch time) of her being tired but non-sleeping, hungry but non-eating...

So I decided to change things up a bit. We went out for lunch and actually sat outside to eat (at Starbucks). The weather has finally cooled a tiny bit here in Georgia; September was full of 90 degree days! It was so pleasant to be outside and Gwyneth just loved it. Something about the fresh air and the sound of birds and watching traffic go by really relaxes her. She sat in her stroller and ate her lunch with no fuss and then was content to observe the world while I read a book! What a luxury for Mommy. I was surprised she didn't fall asleep, but that has been an issue for her lately...

Anyway, we made a quick trip to the grocery store on the way home, which Gwyneth always loves. And here were the next two "sweet moments." We went towards the produce section and on the way, I talked to her about how 'We were going to get some fruit and veggies' and 'Did she have any ideas of what we should get?' I was surprised when she answered right away, saying "nana" and signing "banana"! So I went straight to the bananas to pick some up for her! :)

She was noisy but not cranky as we went through the rest of the store. And I was glad that she was happy to play with a package of paper muffin baking cups without throwing them on the floor! When we got to the check out line, I'd forgotten she'd even had them. I unloaded everything from the cart onto the conveyor belt while Gwyn turned to watch me. As soon as I had put the last item down, she reached over and set her muffin cups on the conveyor belt and clapped "yay" for herself! I was shocked and said "Thank you Gwyn! I would've forgotten to pay for those!"

My sweet girl is surprising me all the time with what she understands about the world around her!

After we got home, I gave her a treat of Gerber yogurt juice with a bottle nipple. When she finished it she was definitely looking sleepy but relaxed (something I haven't seen for a week or two). I took her up to her crib. She was cuddling on her tummy as I started to leave the room. She pushed herself up to watch me leave, then smiled and waved at me, and laid back down to cuddle! What a sweet moment!!

I really needed a nice lunch and nap time like this with her to remind me of how grateful I am to be Mommy to such a sweet little girl. I've been so exhausted by the end of each day lately, but today, I'm enjoying a nice, peaceful nap time break! What a lucky Mom I am.

24 Week Ultrasound

2010-09-27T23:01:00.002-04:00

We had one last ultrasound today with the perinatalogist. Baby #2 is looking 100% healthy! "It" weighs a little over 1.5 pounds and has an above average size head. He or she is also a very active kicker these days!

Here's our baby's profile:

Core Strength

2010-09-22T16:55:00.003-04:00

This week's Physical Therapy appointment was kind of a tough one.

Gwyneth is having some fear issues with standing, kneeling, even sitting on the therapy ball or being held up in the air if her core (chest and waist) are not supported. She feels unstable and has started to be afraid. She whimpers and complains when we try to get into positions that will help build her core muscles, and occasionally will start trembling and clutching for support from whomever is holding her.

Our PT believes we need to focus more now on building her core strength so she can feel confident in those positions and start to get interested in crawling with her belly off the floor and pulling up to stand. She needs more muscle strength around her stomach, hips, and bottom. We'll be working on the quad position and tall kneeling with some distractions like toys or musical shows. I'll also do more work with her on the therapy ball and try sitting her on a cushion where her feet are grounded, but she needs to use her core to sit and reach for toys.

It's hard to watch her be nervous and afraid to do things! Hopefully we can get past this stage soon...

Play Tent Picture

2010-09-19T23:06:00.003-04:00

The neighborhood garage sale happened this weekend and our neighbors across the street participated. So Gwyneth and I walked over to do some neighborly socializing, and found that they had included a lot of items from their grandkids. So we bought this girlie play tent for Gwyn and she crawled right in when we brought it home! :)

The Pursuit of Busyness

2010-09-18T09:35:00.007-04:00

I have gotten back into my love of craftiness lately and I've reopened my Etsy store! I made my first sale (a handbag) this week and it was so thrilling!

I am making a variety of different things -whatever strikes my fancy- but recently I've been making beanbag bookends for nursery decor. I have starting moving through the alphabet to offer bookends with a child's intitials:

More to come soon! www.etsy.com/shop/meganmaulsby

VIDEO: Lotsa Babbling

2010-08-31T23:01:00.002-04:00

I haven't posted any videos in a long time, so here's a collection of scenes of Gwyneth's babbling from about a month ago. She definitely "talks" with her hands, and it sounds like she is giving speeches or reciting poetry maybe. :) Enjoy!

Speech Therapy So Far

2010-08-31T22:01:00.002-04:00

We've been having a great time with our new Speech Therapist, Caren, since we added her to Gwyneth's IFSP. Gwyn took to her right away; giving her tons of hugs on our first official visit back in July. We've been seeing Caren every week in August and we'll continue weekly appointments in September and October to catch up with the amount of visits provided in the IFSP. We were going to do every other week, but with traveling and scheduling issues in June and July, we fell behind.

Here are some of the highlights from the past 6 weeks with Caren:

-We are working on getting Gwyneth to communicate what she wants. We working on the sign for "want" and a conversation style that involves a series of questions and pauses to give Gwyn cues on how to ask for something.

-We're practicing "p" sounds and "t" sounds since these can be difficult for someone with low muscle tone in the lips and tongue.

-Gwyneth is starting to combine two signs together which shows a good step forward in her development. She signs two word phrases like "milk all done" or "more cracker".

-Along with learning tons of new signs (I'll make a list someday of everything she knows now), Gwyn is also saying some new words. She says (while signing also) "nana" for "banana". She says "row row row" when we sing "Row Row Row Your Boat" (and she does the sign for "boat"). She says "vroo" for "vacuum" and moves her hand like she is vacuuming (she has completely gotten over her fear of the vacuum which I am so happy about!). She says a phrase that sounds like "goo goo oo-go" which I believe is her way of saying "good girl Mugo" to our dog Mugo (pronounced Moo-go)!

-We're now working on getting her to say "Go!" to start a game or action from an adult, such as bouncing on her therapy ball or swinging at the playground.

It's a lot of fun and I've seen some definite progress in Gwyn's attempt to communicate instead of simply getting frustrated. Caren's teaching style is to follow Gwyn's lead and take advantage of "teachable moments" so I never have to sit Gwyn down for "speech therapy time." I just incorporate it into our daily lives and it's working out very well!

Gwyneth's Orthotics

2010-08-30T16:39:00.004-04:00

Gwyneth has had her orthotics (AFOs = Ankle Foot Orthotics) for a month now. They are a pretty pink/purple heart patterned plastic with pink velcro. We bought her some new shoes to fit over the AFOs.

Nothing much to report...I am happy with how they support her ankles when she is standing. We're trying to slowly increase her time wearing them in and out of the pediatric stander. We're now up to about 40 minutes at a time twice a day in the stander and a total of an hour and a half twice a day in the AFOs.

19 Week Ultrasound

2010-08-29T08:59:00.002-04:00

Last Monday we had a follow-up ultrasound appointment with the perinatalogist. Baby #2 is looking very good at 19 weeks. We chose not to find out the sex yet! So..."it" was measuring slightly bigger than average which is very good. It weighs 11 ounces now! Gwyneth measured much smaller than average when she was in utero. This baby's heart and everything else looks fine!

We have one more follow-up ultrasound in September to check growth, etc, but the doctor said we have nothing to be concerned about with this one. "It" wasn't being cooperative when it came to picture time, so here are some less than photogenic shots:

Pediatric Stander

2010-07-29T21:18:00.006-04:00

Last week our Physical Therapist brought something new (well, borrowed actually) to our therapy session: a Squiggles Pediatric Stander. In pink! Monica, Addison's mom, who we met for a local DS playgroup and who has the same PT as us, is letting us borrow the Stander now that Addison is done with it. I am thrilled to have this opportunity to help Gwyneth build some muscle tone in her legs.

It looks a bit like a torture device but more friendly because of all the pink. But Gwyneth doesn't mind it and after one week is already getting used to it. She's now trying to help snap the clips together and pull in the tray. I turn on a cartoon (almost always a Wiggles movie) to distract her and keep her entertained. We also played with a xylophone on the tray today. I think I will break out the crayons and play-doh next! We're putting her in now twice a day for 20-25 minutes at a time. Eventually we'll build up to an hour at a time and maybe three times a day.

The point of the Stander is that (1) it holds her in a correct body position while standing and (2) it keeps her in a standing position for long enough to work her muscles well. Without it Gwyneth locks her knees back, rolls her ankles inward, and holds her weight back on her heels. She also tends to lean on her stomach when she can which reduces the amount of weight on her legs. And she will only tolerate standing at furniture or a toy for a couple of minutes at a time. She is getting her AFO leg braces next Monday which will support her ankles and we will use those also in the Stander.

I've already noticed an improvement in Gwyn's posture and leg strength in the first week of using the Stander.

First day 7-22-10:

After 1 week 7-29-10:

I noticed that at first she was shifting her weight at the hips over to one side.

I folded one of her fabric books and it fit perfectly where there was a gap next to her hips.

Definite posture improvement!

First day 7-22-10:

After 1 week 7-29-10:

First day 7-22-10:

After 1 week 7-29-10:

Trip to CO: Visiting with More Friends

2010-07-26T10:29:00.002-04:00

My mom, Gwyn and I went to visit my mom's very good high school friend for lunch at her home:

Dinner out with friends from high school: Yue, Kendra, and Beth:

Another girls night out with friends Brooke, Tava, and Renee:

We got to see Rachel again while she was recovering from shoulder surgery:

We'll miss all the good friends in Colorado! Can't wait until the next visit. Maybe we'll have some visitors to Georgia in the next year. :)

Trip to CO: Playtime

2010-07-26T09:38:00.006-04:00

While in Colorado, we took Gwyneth to a fun new park and she had a great time, especially on the swings! She was yelling "yay!" and "wheee!" and clapping her hands. Other kids around us seemed so serious compared to Gwyn's enthuasium. Her pure enjoyment of things and the way she expresses it is so amazing. I love how she is uninhibited and she makes all of us (parents and grandparents) join her in her happiness. We were all saying "yay!" and "whee!" along with her not caring about the attention we were drawing from other parents and kids at the park. The other toddlers that were giving her curious looks were probably a little jealous that she was having so much fun. ;)

My parents also put up a swing at their house so she could enjoy it all the time!

We had the great fortune of visiting the Clements family for a lot of playdates since they moved into a house this year that is walking distance from my parents' house!

Meg, Gwyn & Renee

Gwyn & Paul
Ben & Reid

Gwyneth was so worn out she fell asleep in Ben's booster seat one day!

Gwyn having fun at Grandma & Grandpa Murray's house:

My mom and I got to visit our friend Shelby and her 2 week old newborn baby boy. Her two daughters were great about entertaining Gwyneth!

Trip to CO: 4th of July

2010-07-25T13:57:00.004-04:00

On the 4th of July, Gwyneth, my parents and I went to a BBQ gathering with the Maulsby side of the family. Even though there was a huge storm that came through that evening, we still had a great time indoors. After the strom, there was a huge double rainbow that we could see both ends of. The pictures don't do it justice; it was incredible! We had a really fun time with all of the grandparents, aunts, uncles and cousins. Gwyn was especially social, showing off all her sign language and, of course, funny faces!

(Couldn't get the entire rainbow in one picture!)

Trip to CO: Family

2010-07-25T13:35:00.006-04:00

Gwyneth and I spent 3 whole weeks in Colorado in June and July! Reid came with us for the first week of the trip and I wish he'd been able to stay longer. We have a bunch of pictures to share so I'll break them up into a few blog posts.

Meg & Reid mesmerized by the movie "Up" while Gwyn acts silly for Grandma & Grandpa Maulsby with the camera:

Reid and Meg's brother Nick.

Gwyn at the Maulsby's house.

Gwyn with Grandpa Murray.

She is a big fan of giving hugs and kisses now!

13 Week Ultrasound

2010-07-16T18:27:00.002-04:00

Last week, we had an appointment with a perinatalogist. Measurements were taken of our little Belly Bean and we got a great profile picture to take home.
The measurements, a blood sample, my age and my past history of having a baby with Trisomy 21 were all taken into account to calculate percentages for our next baby. I got the official results at my OB appointment today that the chances of baby #2 having a trisomy (13, 18, or 21) are significantly less after the testing. Before the test, the chances for T21 were around 1 in 125 and after the test, it's now around 1 in 2600! So we've breathed a sign of relief and hope that we can look forward to the experience of a healthy baby in January.

Gwyneth has been a little charmer at each of our appointments; making friends with every stranger, as usual! In the back of mind, especially at the perinatalogist's office, I've been hoping that each time she makes someone smile and wave back to her, she is opening their hearts and minds and breaking through any preconceived notions they might have had about Down syndrome.

Our Friend Brian

2010-07-14T22:22:00.000-04:00

One of Reid's best friends passed away suddenly one month ago from meningitis. Our friend Brian was one of the kindest and most optimistic people we've ever known. He had a wonderful smile and a humourous wit. He was athletic, enjoying hockey and rock climbing. He was an amazing father to his sons Braden, 11, and Evan, 4.

Brian and his twin brother, David, met Reid when they were 4 years old and they all quickly became best friends. Although I met the three boys around this time in kindergarten, I didn't get to know them well until high school. When Reid and I started dating in college, I saw how close Reid and David and Brian were.

We have had so many fun times together through our twenties and we will never stop missing Brian. I know we will be able to accept his passing eventually, but for now it is still too difficult to believe that a healthy 29-year-old father could disappear so quickly and randomly. Rest in peace, our friend.

In kindergarten (Brian in the red shirt, Reid in the blue shirt).

At our wedding, Brian was a groomsman and usher.

Justin, Brian, David, and Reid.

A fundraiser has been set up to raise awareness and help out the families affected by this meningitis outbreak in Colorado:

http://faceoffagainstmeningitis.com/

Introducing New Baby Bean!

2010-06-10T17:26:00.004-04:00

We are happy to announce that Gwyneth will become a big sister in about 7 months!

We had an ultrasound yesterday that showed our new little bean with a heartbeat of 176 beats/minute. It is literally about the size of a kidney bean, measuring at 1.94 cm long.

Our due date is January 16, 2011!

It is interesting that because of Gwyneth's diagnosis of DS (as well as her heart defect), my new pregnancy has been labeled "high risk." All this means for now is that we have two appointments scheduled with a perinatalogist for high-res ultrasounds. I'll also do the early screening blood test, but I don't want to undergo any invasive testing like CVS or amniocentesis.

Right now, we're just enjoying our news!

Too Many Goldfish in the Sea

2010-06-06T17:10:00.000-04:00

I have a lot of catching up to do since the last time I posted! Summer is in full swing now and Gwyneth and I have already spent a fun morning at the neighborhood pool!

The latest news with our baby girl is feeding issues. She has become very picky it seems and will turn away food after one or two bites! It's been very frustrating for me to figure out what to fix her for meals. Part of the problem is that I haven't been cooking from my baby puree cookbook, hoping to get her mostly on regular un-pureed food. But it's not working so I suppose I need to break out the food mill again!

Gwyneth also has some habits and preferences at mealtime that I just don't understand. For example, she does not like to have too many goldfish crackers (or other pieces of food) on her tray at one time. If she feels that there are too many, she will throw them overboard to the dogs! But if I only put a few goldfish in front of her, she will pick them up and eat them.

Silly girl!

As far as drinking goes, we've only had one successful moment where she drank a couple of ounces of water from her sippy cup. Other than that, she just doesn't want it. But we got her interested in water a few weeks ago when she saw Mommy drinking from water bottles all the time and I gave her some sips. It's not a long term solution though.

But that's okay since she is drinking from a straw now. She is very good at drinking from little juice boxes (which I still have to hold for her of course), but even with those little 4 oz boxes, she only drinks about half the juice. I am always worried that she is dehydrated! We have switched now completely to whole milk (no more formula!) but she is drinking it from her bottle still which I was hoping to be done with. I wanted to switch her to whole milk only in the straw cup, but it's not happening yet. She's taken a few sips of milk through a straw so we're making progress from when she completely refused it.

In other Gywneth news: she will be fitted for AFOs (orthotics) in July. I completed all of her Katie Beckett/Deeming Waiver application for Medicaid a couple of months ago, but we are still waiting for approval.

Also, we will finally be starting speech therapy next Friday! I can't wait to get started on that. Gwyneth's vocal skills have been soaring lately with animal sounds: Woof for Dog, Meow for Cat, Baa for Sheep, Neigh for Horse and so many more! I will try to get some video of all of her sounds. :)

A Little Bow

2010-05-14T08:58:00.005-04:00

Gwyneth's hair is starting to get a little longer...I tried styling it with a bow one morning last week. She let it stay in for almost an hour! :)

A Little Curl

2010-05-07T08:51:00.002-04:00

There Was a Little Girl

Who Had a Little Curl...

...and a cottage cheese mustache (one of her all time favorite foods)...
...and a little bit of an attitude! I had to get some pictures of the way Gwyn's hair is curling above her ears, but she wasn't in the best mood on this day. She was protesting the picture taking and the pause in cottage cheese! :)

Out and About in April

2010-05-06T22:50:00.005-04:00

More pictures from April: before we went to Florida, we had a few days with Reid's parents. We spent a lot of time outside and in the car driving around town. Enjoy the pics!

We did some gardening...

We learned that our flexible girl likes her toes!

We had some very good meals...

And we got some great family photos!

And Gwyneth finally got a little bit of sleep!

Memory Monday: Florida

2010-05-03T09:19:00.002-04:00

In April, Reid and I went on a quick getaway to Clearwater Beach, Florida while his parents stayed at our house with Gwyneth. Our first morning on the beach, we saw a small group of dolphins swimming off shore. The weather was perfect except for a little wind that picked up and tried to cover us in sand as we lay reading on our beach towels!

Returning to Florida brought back so many memories of my family trips there growing up. My mom, dad, brother and I would visit my grandparents in Bokeelia, FL on Pine Island almost every year around Christmas or Spring Break. Sometimes we would take a boat out to explore the islands around the area and spend time on beaches like Sanibel or Cayo Costa. We ate at the restaurant where Jimmy Buffet wrote Cheeseburger in Paradise! We would visit my great-uncle and great-aunt in Fort Meyers and once my dad and I took their canoe out in the canals and had dolphins swimming right along side us. My brother and I loved to stop at the tiny burger stand on Pine Island Road and get delicious chocolate malts. As I got older, I would always bring a novel with me and lounge around the screened-in porch reading. My grandparent's house was on a golf course and occasionally we got to ride around in their electric golf cart. I remember also the sounds of the birds and the feel of the humid air. I loved the atmosphere in Florida and I think I like living in Georgia now because of my fond memories of our vacations. Someday soon I will take Reid and Gwyneth down to visit my grandma in Bokeelia so they can experience all the great things about that area with me!

VIDEO: Gwyneth and the Dancing Easter Bunny

2010-04-29T18:14:00.003-04:00

Gwyneth received a singing and dancing Easter Bunny from family in Colorado. Here is the belated video of her reaction!

Memory Monday: Happy Birthday Dad!

2010-04-12T00:04:00.004-04:00

Megan's Dad is celebrating another b-day today! We love you Dad/Grandpa/Kevin/James/JK/Jim! Hope you have a wonderful day.

For Memory Monday today here is a photo of Megan around 1 year old with the best Dad in the world! :-)

Overdue Pictures!

2010-04-11T21:29:00.008-04:00

Christmas:

Spending time with Grandparents.

Cuddling with Dad on a cold Colorado Christmas Eve.

Meeting Brooke's boyfriend Joe.

Opening presents!

Eating peas:

Ladybug Birthday Cake:

She didn't want to eat any birthday cake - again - this year.

Major Teething:

Found Gwyneth teething on her sock! So I gave her a more suitable replacement:

Visit with cousin Alli:
Meg's cousin Alli was in town for a conference so we went out to lunch!

Easter:
A dancing/singing Easter bunny sent by Grammie...video coming soon.

Beautiful Easter Sunday.

Lunch with the Hansens.

VIDEO: Army Crawling

2010-03-23T12:49:00.005-04:00

This past week has been a very proud one for us: our little girl has started to inch forward in an army crawl! She's getting a little frustrated that I keep pushing her toys away from her, lol, but it's so exciting to see her going forward!!

Gwyneth at 2 Years Old

2010-03-12T15:14:00.004-05:00

Gwyneth had her 2 year check-up with her new pediatrician yesterday. She only had to get one shot, but she fussed more whenever I tried to lay her down (to measure height or change her diaper). I'm not sure why she is bothered by that at the doctor's office. Maybe she's associated laying down with getting shots?

Here are her stats:

Weight = 21 lbs, 10 oz = 50th percentile (DS)

Length = 30 3/4 inches = 30th percentile (DS)

Head = 17" = 30th percentile (DS)

Also, last week, Gwyn had her first visit to the dentist! She has 12-14 teeth (some new ones have been coming in recently). She did really well with the doctor who is a pediatric dentist and a very nice guy! He said it looks like she is missing two of her upper front teeth so she may be missing those when she gets her adult teeth.

Aimee Mullins on Being "Disabled"

2010-03-09T21:58:00.002-05:00

I found this article on CNN.com tonight that included video of a wonderful speech by athlete/model/actress Aimee Mullins talking about the meaning and consequences of the word "disabled". The article link is here: http://www.cnn.com/2010/OPINION/03/09/mullins.beyond.disability/index.html?hpt=Mid

And here is the speech; it's just over 20 minutes and very worth it!

The poem she recites at the end especially spoke to me:

The God Who Only Knows Four Words

by Hafiz

Every

Child

Has known God,

Not the God of names,

Not the God of don'ts,

Not the God who ever does

Anything weird,

But the God who only knows four words

And keeps repeating them, saying:

"Come dance with Me."

Come

Dance.

Memory Monday: Gwyneth's First Days

2010-03-08T23:42:00.004-05:00

Gwyn's 2nd bithday was on Saturday and for the Memory Monday picture today, I'm thinking about 2 years ago when we were trying to get adjusted to our little newborn. We lived and breathed the NICU for the first 6 days of her life. By the third day after her birth, the diagnosis had started to sink in for me, but I tried only to focus on her heart issues and breastfeeding. I tried to take notes whenever various doctors or nurses would explain any changes in her heart or lungs or slight jaundice that she had. I obsessed over milliliters and ounces; in her weight gain, her consumption of milk, and how much I pumped.

Those first days are a bit of a blur and were definitely hard, but I can look back at the pictures now and smile at my beautiful little newborn!

I can't believe she's already 2!

Memory Monday with VIDEO: Bellagio Fountain

2010-03-01T17:19:00.002-05:00

I’ve been thinking about starting a tradition for this blog to have posts every Monday with pictures or video or stories of something from our family’s past. I thought of this back in January but never got around to doing it…so today I’ll do a memory for all of January/February!

Five years ago, Reid and I got married at Christmastime. We had a lot of family travel in for the wedding and had a wonderful time celebrating Christmas with them in the days after the wedding. But having our wedding just before Christmas also meant that we didn’t take off on a honeymoon right away. Reid had to go back to work in January and so we didn’t schedule our honeymoon until the last week of that month. We went to Las Vegas and had a blast (except that I caught the flu and was sick for the last couple of days…). We stayed in the Bellagio and had a room with a view right over the fountains! I took a video of the fountains when we were out in front of the hotel one evening. The music that the fountains are choreographed to plays outside of the hotel and on a special channel on the televisions in the hotel rooms! For those of you who haven’t been to Vegas before, here’s a sample:

VIDEO: Rockin' and Rollin'

2010-02-26T22:53:00.003-05:00

Gwyneth has reached a much anticipated milestone this week! She is strong enough now to push to her knees and start rocking!! She will be crawling before we know it.

She has been so much more active the last couple of weeks. It's been great to see her get interested in exploring. In this video, I captured some of her expert rolling which is her main method of getting around right now. But I think she is close to starting to do an army crawl.

In the last bit of the video, I was able to catch her rocking this morning (she won't perform if she sees me get the camera out)!

YAY, GWYNIE!!

Busy Bees and Social Butterflies

2010-02-24T12:47:00.002-05:00

Gwyneth and I have had many social activities in our neighborhood keeping us busy lately including play dates for Gwyn and a night out just for Mommy!

Our first playgroup we’re now involved in is for kids with Down syndrome who live in our area. There is another mom just a few streets away from me in our neighborhood who has a little boy with Ds who is only 5 weeks older than Gwyneth. We’ve also met a mom with a daughter who is about 2 and a half, and there is another mom that I haven’t met yet who has a daughter I think around 3 years old. It’s been great to connect with other moms who understand what it’s like raising a baby with Ds. I remember the first really helpful thing for Reid and I after Gwyn was born was a parent support group in Colorado that we went to monthly.

This group of moms has already been so helpful to me with finding a pediatrician familiar with kids with Ds near our new home and with the deeming waiver process which I’m working on now.

Here are pictures from our play date last month:

Our second playgroup is a little larger. When we moved into our new neighborhood last summer, I saw an ad in the newsletter (yes, it’s a large “swim/tennis community” with a newsletter and lots of activities) for a Mom’s “Meet Up” group, so I signed up and went out on a few stroller walks last fall. Then as the weather got too cold for outdoor activities, the Mom’s group started putting indoor play dates on the calendar. So now Gwyn and I have been to some play dates this year with this group. There are 7 or 8 moms who bring usually just their youngest kids while the older ones are in school/preschool. At first I was nervous about joining a group of strangers because I will admit that I wonder how people will react to Gwyn (having Down syndrome). I don’t know why I even think about it though, because she always greets people with smiles and waves which instantly wins them over, and I’ve never had a negative encounter with a stranger (as some fellow bloggers have written about).

All of the moms I have met have been very accepting of Gwyneth and we have felt very welcome in the play group. I have no doubt that people recognize that she has Down syndrome even though I don’t think I’ve actually said those words. It’s obvious that there are differences between her and the other 2-year-olds (or even 1-year-olds) but there are also similarities and everyone’s impressed with Gwyn’s dancing skills and use of sign language. I think it’s great for Gwyn to be able to watch how other kids move and play. I sometimes talk about her Physical and Occupational Therapy or maybe her heart surgery, but I also love having other general mom conversations.

My “night out” was for a monthly book club that a neighbor down the street from me started. It was great for me to have some social interaction that didn’t revolve around kids and to meet some more of my neighbors. I had such a fun time, and I will look forward to it every month!

Weighing in on Recent Headlines (a.k.a. Sarah Palin Has it All Backwards)

2010-02-19T09:26:00.003-05:00

All over the media lately there have been headlines about the r-word, about Down syndrome depicted in the media, and about Sarah Palin’s reactions. I feel it’s time for me to weigh in because the topic is reaching more people I know and because of the current Oz Squad mission.

Here are my thoughts about Sarah Palin’s recent comments:

Rahm Emanuel used the r-word in a way that many people I know (including myself) have used it, he apologized and signed the r-word pledge so I commend him for that;

Rush Limbaugh used the r-word in a very offensive way having nothing to do with “satire” and he is not apologetic;

Steven Colbert was right in pointing out Sarah Palin’s hypocrisy;

the Family Guy episode (while not particularly funny) attempted to show that people with Down syndrome are just like everyone else, the writers of Family Guy are equal opportunity offenders and even though they threw in some dumb stereotypes, they never used the r-word, and they used a well-known actress with Ds to be in the show.

In summary, we all need to have a sense of humor and Sarah Palin needs to spend a little time thinking about what a true advocate for people with Down syndrome should say with a platform like hers. Please check out our open letter to Palin at http://ozsquad.blogspot.com/2010/02/dear-sarah.html and sign your name in the comments! And/or sign the r-word pledge here http://www.r-word.org/ Thanks!

Reid’s 30th Birthday!

2010-02-17T09:46:00.004-05:00

I’ve really been neglecting the blogosphere the last couple of weeks, but we’ve been very busy around here! J I’ll be catching up with all our latest news ASAP!

Reid’s mom Sue is visiting us in Atlanta this week and helped us celebrate Reid’s 30^th birthday yesterday! We decided to surprise him while he was away at work by decorating the house with balloons and ribbon, piling a bunch of presents in the living room, and getting a mini red velvet cake from the bakery. He was very surprised and happy to see the party atmosphere we had created for his milestone birthday. Reid’s dad was hoping to join us this week to help celebrate, but unfortunately is stuck at home taking care of their dog who has a broken leg! We miss you Ron. J

We also celebrated Reid’s birthday this past weekend in combination with another birthday and with Valentine’s Day with our friends Chris and Rebecca. Chris’s birthday is the 15^th and Reid’s is the 16^th. The four of us went out to a very fancy dinner at Ruth’s Chris Steak House while we shared a babysitter for Gwyneth and their daughter Morgan. The food was delicious and going to a non-kid friendly restaurant was quite a treat!

Learning to Chew

2010-02-01T11:03:00.018-05:00

After my last post, Tina at My precious Saira asked how we got Gwyneth chewing and how we made the transition from pureed foods to solid foods while dealing with choking.

The transition from purees to solid bites has been a long road. I've been making most of her baby food using recipes from Top 100 Baby Purees by Annabel Karmel. I have an Oxo food mill (see pic) and it has three different settings for the consistency of the mixture. I think they are close to the Stage 1, 2, and 3 consistencies of jarred baby food. I gradually increased the chunkiness of the foods I was making for her and made them thicker by adding less broth to meat/veggie purees and thickened the fruit purees with baby rice cereal flakes. Gwyn will still gag occasionally on the "stage 3" purees especially if she has too many spoonfuls before swallowing. She was eating everything by pushing her tongue to the top of her mouth, so each bite took a lot of effort and she sometimes keeps food on the roof of her mouth when another spoonful comes in!

Six or seven months ago, I had been trying for months and months to interest Gwyneth in finger foods starting with Gerber puffs and also pieces of graham crackers because they are supposed to melt quickly in a baby's mouth. Part of the challenge at that time was that Gwyneth didn't want to have her arms up on top of her tray, so encouraging her to show her hands was the first step. So we did lots of clapping and snapping and other games to get her to bring her hands out of her lap. Gradually, she has adjusted to feeding herself little bites of food as she has gotten more accurate with it, as the food has gotten yummier (cheese is her fav!), and as she learned to chew the food instead of choking 80% of the time...

Last November we added an Occupational Therapist, Shirley, to our IFSP to help out with feeding issues. My concern was her lack of self-feeding finger foods and drinking from a cup and/or straw. Right away Shirley noticed that Gwyneth was not using her teeth to break up the food. She also explained that Gwyn might need some sensory input in her mouth to focus her attention on what her mouth is doing while eating. Here are my notes from our first two sessions with Shirley:

Oral Motor Stim – to “wake up” her mouth:

- push down on her tongue with the spoon with each bite (gives input to tongue)
- start meal with crunchy finger foods (texture will give input to mouth)
- add crunchy texture to purees: crumble cheerios on top of yogurt/oatmeal, crumble crackers on top of veggie puree, etc
- add flavors/spices to purees: cinnamon in applesauce, etc
- try (45 minutes before meal time so her mouth isn’t too tired to eat) stimulating around gums, press into cheeks, roof of mouth and tongue (5 presses each) using finger brush *try American Red Cross Infant-to-Toddler Oral Care Kit

Encourage chewing:
- put bites or spoonfuls of food in the side of her mouth/cheek right between her teeth so her tongue has to move to the sides to find it
- model chewing bites of crunchy foods by showing her exaggerated chewing and crunching and encouraging her to imitate – lots of praise when she does!

Gwyneth was imitating everything at the time, so she picked up the exaggerated chewing very quickly. Once she realized what her teeth could do, she actually started moving crunchy bites of food with her tongue over to her teeth!

Some of the finger foods she eats now are:
- blueberries, raspberries, blackberries
- pieces of toast (my favorite snack to do is pesto toast – spread pesto pasta sauce on the toast instead of butter – Gwyn LOVES it and I always make a piece for myself too)
- pieces of peanut butter and jelly sandwich (this is a messy one!)
- pieces of tortilla with cheese
- graham crackers, rice crackers, Gerber Lil Crunchies, etc
- pieces of fruit filled cereal bars
- and, of course, bits of soft cheese!