Friday, May 28, 2010

Stages of Eating

Give your baby some independence with utensils while eating.

Give her lots of healthy choices.

She might get frustrated with her utensils and her choices.

Eventually she'll get hungry enough that she'll take a bite.

End with dessert and she'll be all smiles once again.

Wednesday, May 26, 2010

"Wordless" Wednesday




Keep on voting for Dukes educational resource program for children with Down Syndrome, faces like this need the support.

Update: It's up to 55 from 101 in just 4 days. We might just make it to the Top 10. If they stay in the Top 100, they'll roll over to next month's voting for funding.

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Tuesday, May 25, 2010

Please keep voting!

Please consider using the last 7 days in May to vote for Pepsi's Refresh...There's a program in the running: create an educational resource program for children with Down syndrome: Duke Comprehensive Down Syndrome Clinic. To be eligible for funding they need to rank in the top 10 of the their category of $25K. They are currently ranked as 72nd, up from 101th in the last couple of days, so this is a very attainable goal. Even if they don't receive funding this month though, if they remain in the Top 100, they will automatically be rolled over to next month's voting.

You get 10 votes a day, but you can only vote for a given program once a day. So you have an chance to vote 7 times!

You can either vote using your Facebook account or set up an account through Pepsi. I set up an account through Pepsi last month and I haven't received any propaganda from them. Just go vote and help spread the word to educate people about Down Syndrome. It takes about a minute to vote, please take a moment to help Duke receive this grant.

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Monday, May 24, 2010

Webinars

From the comfort of your home you can watch a new webinar each month hosted by the Down Syndrome Program at the Children's Hospital of Boston. It's a little late for this month, as they hosted a feeding and swallowing webinar early today. In fact today was the first time I committed to watching a webinar EVER. I was a little hesitant, but it was actually quite enjoyable. There were a couple handouts provided and those of us at home were told to look for the Power Point presentation in a downloadable format in the next couple of days. It was a FANTASTIC presentation. The information geared more towards early eaters from bottle/breast and transitioning to purees, skills which Peanut has mastered. But the material was interesting, informative, and frankly I wish I would've been able to watch it about 19 months ago when Peanut entered our lives. I just wanted to get the word out there about these seminars. I'd bookmark the site, if I were you, or simply make note of them on your calendar. Here's the listing of their upcoming talks, but I'd encourage you to check out the Children's Hospital of Boston to get all the details.

UPCOMING TALKS:
toddler boy June 28, 2010 - Celiac Disease in DS presented by Dascha Weir, MD

July 26, 2010 - Nutrition and DS presented by Kathryn Brown, MS, RD, LDN

August 23, 2010 - What Your Other Children Are Thinking: Sibling Issues presented by Brian Skotko, MD, MPP and Sue Levine, MA, CSW

September 27, 2010 - Obstructive Sleep Apnea in DS presented by Dennis Rosen, MD

October 25, 2010 - Toilet Training and DS presented by Kimberly Dunn, PNP

November 15, 2010 - Down Syndrome presented by Allen C. Crocker, MD

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Saturday, May 22, 2010

Orthotics

A couple months ago I asked our physical therapist if there was anything we could do to help improve Peanut's ability to walk. Her immediate reply, "orthotics". I was a little hesitant, simply because of the preconceived idea I have about orthotics (braces). I imaged large, clunky, uncomfortable devices that limit movement and were destined to make Peanut feel miserable. Yes, I envisioned Forrest Gump and being unable to run with the other kids until one day he broke free from his awkward restraints, never to look back again. But I figured the PT knew what she was talking about so we started down the long winding path to get an approval for orthotics. It did take FOREVER because of our unwilling insurance company, but as of Friday morning, we left our local orthotics office with Peanut's orthotics fit neatly to her little toddler feet.

Peanut needs orthotics because of her low muscle tone known as hypotonia which is a common characteristic in individuals with Down Syndrome. When Peanut bears weight on her legs she has a tendency to roll her ankles inwards, or foot pronation. Since Peanut is not walking just yet, she will primarily wear these orthotics during therapy and on an off throughout the day.

The orthotics will increase her stability when bearing weight and when she begins walking. When using the orthotics, her body will "learn" the correct way to stand. "The use of orthotics will help her to build and reinforce her gait muscle strategies and movement patterns." Essentially the orthotics are training her legs into a pattern of movement. We were given 2 options: Cascades and Sure-Step. We chose Sure-step which uses a method that "compresses the foot into alignment".

The Pros of Sure Step: First, to cast for Sure Step they only needed to take measurements for Peanut's feet compared to Cascades that require an actual cast to be made as in making a cast for a broken leg or arm. So there was no yucky cast material or trying to force a 19 month old to sit still. Second, Sure Step is a shorter orthotic for SMOs Superior Malleolar Orthosis both at the ankle and at the bottom near the toes versus Cascades. This is important because she still has free range of movement in her ankles and she is able to bend her toes which will allow her to develop more typical pattern of movement when bearing weight, pulling to stand, walking, and eventually running. Third, both Cascades and Sure Step are designed to be worn with a pair of socks and underneath a pair of shoes. The socks are to limit friction between the skin and the plastic material of the orthotic. However, it's impossible to over-tighten a Sure Step orthotic, their pamphlet stated several times, "tightness is essential for proper fit!!! Snug is not enough!!!" which "hopefully" means that we will be able to continue using Peanut's regular shoes versus moving her up in size and width, which is common for the Cascades brand. There are some limitations to the shoes that can be worn with these orthotics: we are to look for lace up sneakers and a round toe box and to AVOID shoes with tread coming up over the front of the toes and any fashion shoes. Can't say I'm said to report that high heels aren't in Peanut's future anytime soon. ;-) And lastly

I stated previously that these orthotics should be worn with shoes, but we are a barefoot sorta family when sitting around the house. So, I attempted to have Peanut wear the orthotics with a pair of socks around the house to break them in. That turned out to be a big no-go in the kitchen. Peanut has steadily been bear crawling here and there throughout the house. Since the orthotics have no traction on the bottom of them (and why would they as they are meant to be worn in shoes?), instead of bear crawling Peanut has been sliding this way and that across the kitchen floor. She sadly resembles Bambi trying to walk across the ice.

Here's Peanut sportin' her new orthotics, barely visible, huh? (Sorry for the dazed and confused look, I was interrupting Signing Time to snap these photos.)


Sure Steps are conveniently labeled so we don't put them on the wrong foot.


Sure Steps come in a variety of colors and styles. We chose Blossom.


No orthotics are required when swinging.


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Wednesday, May 19, 2010

Sweet Chrissie

Chrissie Patterson lost her heart battle today. Please consider going to her mama's blog and leaving some words of encouragement or simply just praying for their family. This is a faith-based Christian family that adopted their sweet Serbian princess in October 2009 and each post will touch your heart in unexpected ways. I have been following Chrissie's blog a little while before she went for her heart surgery and then for the 31 days that she has spent in the PICU. It was a long fight for this little girl and Jesus took her home to dance with him today. I'm heartbroken for this family but hopeful after reading Lorraine's most recent post: I Don't Wanna. Please pray for peace and strength for all of us that have been touched by this wonderful little angel.

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Monday, May 17, 2010

Reading, Writing, all about Communicating

Peanut is 19 months old. She has upwards of 50 signs and seems to learn a new one on a weekly basis. I introduced signing to Peanut as an infant and it finally took off when she was 18 months old. Before that, it was pure patience on my part with a little bit of hope that it would "click" and it did. I'm also a HUGE advocate for Signing Time and all of their products. The videos are flashcards have been wonderful tools for Peanut and the rest of us to learn signing with her.

As for books. I always wanted her to be a reader so I also introduced books very early. I remember getting so frustrated because she wouldn't look at the stories and was forever distracted by "prettier things" in the room. As long as it wasn't a book, she was interested! But now, she readily signs book and if I'm busy with this or that, then she'll holler until she gets a couple good stories out of me. Your Baby Can Read also helped us along our reading path, but I tend to think it was the constant presence and presentation of books that broke her down.

Coloring. Again, I've been introducing this well before Peanut is ready for the skill. Everyday, or most days we sit down with a pad of paper and scribble some doodle drawings. To date, she still doesn't like this task and will chuck her crayons to the far side of the room once she's made her mark on the paper. Well, she usually throws them before and after her scribbling session. I don't expect much out of her just one line per crayon and there's 5 crayons in the bag. I also don't scold her for throwing. I let her do what she wants with the crayons, but she also has to do what I want too. That way we are both happy with the exercise. I expect she'll enjoy her time alone with a fresh pack of crayons and a clean sheet of paper in another year or so.

But verbal communication! Well, that's a whole other ball game. Signing, books, and coloring...all of these I can physically prompt her through until she masters the skill. How do I get my nonverbal kid to speak though? We FINALLY got approval for speech, so we are now on the road to at least trying to make functional sounds. (Our insurance doesn't cover speech until a child is 18 months old, but that's for another post) I want to work with Peanut from home too though. So, I'm looking for people that have the full set of See and Learn. I have the free downloads on my computer, but when you look at the picture in the advertisement, there's just so much too it that's not in the free downloads. So I don't really know what I'm missing out on. hmmm...any suggestions?

Also, I just saw a new program through Handwriting Without Tears called Word Time. From watching the videos, it's definitely above Peanut's skill level and there are no pictures. But, it's geared towards developing language and familiarity with written language. I started above Peanut's skill level, or what was expected to be above her on many other target behaviors, and when she was ready for it to click, it did. I think both programs look like they would be great for language and reading, but I just can't make an educated decision by looking at the pictures and watching a couple brief videos here and there.

EDIT: This morning I was also thinking I could invest in a set of Language Builder cards and pair those with hand written flash cards. (This would be the cheapest approach.) Super Duper Publications even has sign cards that might work.

Anyone out there have any good suggestions? Does anyone have a tried and true home based method to get some functional vocalizations out of our child?

Monday, May 10, 2010

Amazing Bloggers, An Amazing God

I never dreamed I would have a child with a Down Syndrome. But I did. I love her endlessly. Now, where we live has a wonderful support group, but it's not always easy to get out and meet people when events are scheduled. This or that comes about the space between visits gets longer and longer.

When I really began to struggle with Peanut having Down Syndrome was as we approached the time for her to have her heart surgery. I prayed, scoured the internet for a little bit of proof for peace of mind, and I started this blog. I started this blog to let our family and friends know how Peanut was doing through the course of her surgery. It was a stressful time that didn't allow me to make conversational phone calls. My blog allowed me to put the information out there and connect with other kiddos parents that had endured the fears of surgery.

However, I never dreamed that I would find so much support in this online community. A couple days ago I posted the news about Sweet Ella Grace, as did others. Within the last day or so, post after post has popped up on my blogger dashboard in support of this brave little girl and her family. Honestly, it just brings tears to my eyes. I'm sure there are many more, these are just from the "handful" of blogs that I follow.

Daily Smiles
Little Wonders
Ruby's Life
Jaxson's Fight
Class of 2008
Lilys Garden


I debated whether to post this on my facebook page or just to sit in awe of the support that's been provided to Ella and her family. But I wonder if maybe someone new to this community might stumble upon this post...someone that has a child with Down Syndrome, or any disability, for that matter...to that reader, you should know that there's a whole world of people out there that can give you support from the comfort of your own home. Sure, getting out and mingling is sometimes preferred, but not everyone feels comfortable putting on their party hat and admitting they need help from time to time. There are some amazing people online that I would've never encountered had it not been through blogging.

To each of you praying for, supporting, or even just following along silently...I think you are each individually amazing. I am so very blessed to be apart of the journey that we are on together.

And Sweet Ella Grace, we continue to pray, pray, pray. You are an amazing little girl and I have no doubt that Our God will bring you through this to show leukemia who's boss.

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If you'd like a button for your blog, you can get it here.


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Saturday, May 8, 2010

New Warrior

I recently started following Sweet Ella Grace. I set my eyes on Ella's sweet blue eyes and pretty blonde hair pinned up in a beautiful blue bow, I just fell in love with this little princess. A couple days ago her mom posted that she's been looking pale and had some concerns regarding the dreaded leukemia.



"Individuals with Down syndrome have a 15 to 20 times greater risk of developing leukemia. The majority of cases are categorized as acute megakaryoblastic leukemia, which tends to occur in the first three years of life, and for which there is a high cure rate." Annas Angels. Ella has what is called transient myeloproliferative disorder TMD, so she was at an increased risk of developing leukemia.

Heather posted a little information about Ella and her mom, Denise. And you can read about what Heather and her little girl Zoey battled through on her blog. Zoey and her mom are no stranger to TMD and it's evident that God put these women and children together with a purpose in mind.

Essentially prayer is what is needed right now for Miss Ella and her family. Please put your hands together and bow those heads as a whole lot of strength, a side of mercy, grace, hope and peace are at the top of the list.

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Thursday, May 6, 2010

Bring Makayla Home

Miss Makalya is an orphan from Eastern Europe that needs a forever family. Lacey, Jaxson's mom, wants to be Makalya's mommy too. Right now, they are raising funds and lifting up lots of prayers to bring their baby girl home, to a family that will love and cherish her for all that she is. If you haven't already, please swing by her blog Bring Makayla Home and check out her auction items.

Lacey has over 35 items up for bids and is adding more daily. Check it out and think of Christmas or birthday gifts as you are browsing. Why not get it done early this year without the hassle of busy crowds?

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Last year we had an online auction for Marissa's Marchers and it was a huge success. We raised money to pay for a helmet that insurance wouldn't cover. We raised even more than we needed and were able to donate the balance to our local Down Syndrome Network. Let's show Lacey and her family the same love and support that were shown to us and help them to bring their sweet little girl home.

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Tuesday, May 4, 2010

Pepsi Refresh

Please vote everyday in May for Pepsi's Refresh...There's a program in the running: create an educational resource program for children with Down syndrome: Duke Comprehensive Down Syndrome Clinic. To be eligible for funding they need to rank in the top 10 of the their category of $25K. They are currently ranked as 88th, up from 325th in the last couple of days, so this is a very attainable goal.

You can either vote using your Facebook account or set up an account through Pepsi. I set up an account through Pepsi last month and I haven't received any propaganda from them. Just go vote and help spread the word to educate people about Down Syndrome.


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Monday, May 3, 2010

Ice Cream Thief!!!

She may look all sweet and innocent, but what we really have here is..


An Ice Cream Thief!

I gave her 1 little taste and she claimed this cone as her own. I was given periodic licks to tame the melting, but it was hers through and through.