December 17, 2012
by marfmom
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2012 Marfan/RD Gift and Resource Guide, Part 2

It’s that time of year again! Last year’s Marfan & Related Disorder Gift/Resources Guide was such a hit that I wanted to do it again. Here you’ll find products that parents of kids of all ages love. Response with ideas of toys/products this year has been overwhelming (in a good way!). So, we’ve had two days of guides. Part one had glasses, clothes, and pain management items. Today are toys, feeding items, and mobility products. Some of these products are ones that I’ve used with Baby J. Others come by way of suggestions from my readers. If you have questions about the items here or have some you’d like to add, be sure to leave a comment!

Toys:
Puzzles
We’re big on puzzles for J right now! Not only are they a great general development toy, but they really help with fine motor skills. I find that Melissa & Doug makes good quality children’s toys. The farm sound puzzle is one of J’s favorites at occupational therapy. We saw the latches board at his physical therapy office in California and while J was too young to use it at the time, the Menininho enjoyed it.

Ipad (or other tablets)
I wonder if Steve Jobs imagined all the uses his product would have for the special needs community! Nakia’s son uses his tablet to practice using his pointer finger. I know Baby J also has had trouble isolating his fingers, though he is getting better at it by playing games on my iphone! Larie’s pre-teen son uses an ipad to read (or listen to) books, play games, or do assignments. The ability to enlarge the print is helpful, especially on “bad vision” days.

Exercise ball
J’s physical therapist recommended that we use an exercises ball to strengthen his trunk muscles. He really enjoys bouncing on it (with us holding him around the waist) for at least a couple minutes at a time. We move him back and forth quickly so that he has to work to keep himself upright. Marfan mom Larie also reports that her pre-teen son uses bouncing on the ball as a way to relieve pain.

Lite-Brite
Loeys-Dietz mom (and OT!) Jennie uses a lite-brite with her daughter. Not only is it great for fine motor practice, but it strengthens visual perception too. I think is something both my boys will benefit from in a couple of years!

HiHo Cherry-O
Jennie uses this for her daughter, as well. It’s a counting game for children ages 3-6 years, but counting all those little cherries is a great way to practice fine motor skills!

Hammering Block
You’ve all seen toys like this, I’m sure. Julie told us her son’s OT used this as a therapy toy. Instead of using the hammer to hit the bars, her son, who has Loeys-Dietz, has to pull them out and push them in with his hands. Makes for an easy way to work on strengthening the fingers and wrist!

Feeding:
Nuk Brush
It appears that oral motor and sentivity issues are not uncommon in children with connective tissue disorders, whether that be from low oral tone, reflux, allergies, general motor delays, or a combination of those. We used this brush with J in order to help him become accustomed to different textures, as well as something being in his mouth period (he was reluctant to really start eating solids till 15 months of age).

Starbucks Straws
Jennie’s daughter only drinks from a straw. For some children it’s easier to do this than to use a sippy or open cup. I know J used straws until fairly recently because he didn’t have the wrist/arm strength to operate a sippy cup. Jennie likes the Starbucks straws because they are more durable than other brands (for example, if you bite them they hold their shape). They can be purchased from Starbucks in 4-packs.

Reflo
We haven’t tried this cup yet but it’s on my list. J’s developmental specialist recommended it as a good transition cup between sippy and open. It controls the flow of liquid and prevents spills. I am curious how well it will work for thickened liquids.

Honey Bear Cup
This cup is designed to help teach children how to use a straw. According to its website, “The Honey Bear allows you to control the flow of liquid into a child´s mouth by squeezing gently on the bear’s tummy to push liquid through the straw.” Julie has used it with her son.

Mobility:
Hugga Bebe Deluxe Infant Support
Another suggestion from Julie! This adjustable support helped hold up her son’s head so he could play in his exersaucer. It would also work for high chairs, jumpers, park swings…anything where some extra head support might be needed.

Ormesa New Bug Seating System
This is a stroller for older/taller kids. Marfan mom Sam uses it for her daughter and loves it! There are multiple bases possible, 4 wheel style, 3 wheel style, and for use as a high chair.

Are there must-have products or life-changing toys I’ve missed? Fill us in in the comments! Don’t forget to check back for our toy and feeding guide!

* I did not receive any compensation at all from any of these companies for reviewing or otherwise mentioning their products.

December 13, 2012
by marfmom
2 Comments

2012 Marfan/RD Gift and Resource Guide, Part 1

It’s that time of year again! Last year’s Marfan & Related Disorder Gift/Resources Guide was such a hit that I wanted to do it again. Here you’ll find products that parents of kids of all ages love. Response with ideas of toys/products this year has been overwhelming (in a good way!). So, we’re going to have *two days* worth of guides! Look for toys and feeding products tomorrow! Some of these products are ones that I’ve used with Baby J. Others come by way of suggestions from my readers. If you have questions about the items here or have some you’d like to add, be sure to leave a comment!

Glasses:
Solo Bambini
Steph and Sam rave about these glasses! The company specializes in designing colorful and durable frames for children under the age of 10, but especially infants. They do have some glasses for adults now though. Sam writes, “ [My daughter’s classes have] been sat on, chewed on, run over with her stroller and walked on.”

Miraflex
Marfan mom April uses Miraflex glasses for her young son. These are unbreakable frames and come in a variety of colors, sizes, and styles. The company makes sunglasses, trial frames, and straps as well. Finally, you can replace the lenses if the prescription changes without having to purchase another frame, and the lenses pop out for easy cleaning.

ZenniOptical
This is a website that Nakia uses to buy her son’s glasses. Although they don’t carry the above brands, they do have frames for INCREDIBLY cheap. Just surfing around now, I’m seeing frames for $7-10! You can’t beat that deal, especially for older kids who aren’t in such a risk of breaking their frames (though for that price, it might not matter if they break!).

Straps
If you have a young child in glasses, you know a strap is a must to at least attempt to keep the glasses on your kid! Jess suggests going to a craft store like Hobby Lobby, Michaels, or Joanne’s and buying elastic to fit your child’s head. Her son’s glasses have a tiny hold at the end of the ear piece, so she just ties a knot in each end and that holds the elastic well. Jess said it works just as well as a store-made strap, but saves a ton of money!

Clothes:
Puma
Jess turned me on to Puma shoes and I agree with her: they are awesome for thin Marf feet! They’re a bit pricey but they fit so well! We actually found J’s on ebay, so I’d recommend checking there.

Pants
We all have favorite brands here. Sam recommends Gap’s skinny pants (pictured). Steph reports that Children’s Place has slim toddler pants on their website. We actually were given a pair of slim girl’s pants for J from Old Navy (they don’t look very girly, minus the bows on the pockets!) that fit him like a glove! I call them his hipster pants. We’ve also had luck with the Kohls brand and sometimes Carters, too. Loeys-Dietz mom Julie also told me Macys is carrying Levi’s 514 slim straight jean with adjustable waist for babies.

Personalized
Sorry, but I have to plug my Marfan/RD store too! 🙂 It’s through CafePress and it has clothes for every member of the family, birth to adulthood! I offer non-clothing products too (mugs, teddy bears, necklaces, ipad covers, etc.). I love custom orders so feel free to message me with whatever you have in mind. I have some additional Loeys-Dietz items coming soon!

Pain Management:
Mattress pad
Larie’s son loves his mattress pad. It really helps with his aches and pains at night. She’s not sure of the brand, but this one from Costco (pictured) should give you an idea of what she’s talking about.

Massage Cushion
If I had a regular chair that I blogged in, as opposed to the living room couch, I would SO get one of these. They’re great for back pain if you get the right one (some brands are too hard, I think). Some even apply heat as well!

Meds
As with any medication, please first consult with your doctor! Leslie, a nurse who works with Marfan patients (and, she’d like me to add, is passionate about their care!), recommends Diclofenac gel, which you just rub into the skin for pain relief. Meaghan, who has Ehlers-Danlos, loves Boswellin (pictured), which works the same way and is herbal.

Are there must-have products or life-changing toys I’ve missed? Fill us in in the comments! Don’t forget to check back for our toy and feeding guide!

* I did not receive any compensation at all from any of these companies for reviewing or otherwise mentioning their products.

December 11, 2012
by marfmom
0 comments

Chicka Chicka Boom Boom Party

J’s favorite book right now is Chicka Chicka Boom Boom, so we decided to make that the theme of his second birthday party. I’m not sure how much HE was into it, but the Menininho loved all the letters hanging from the ceiling and decorating the ornaments!

Mark found these cute letters, palm trees, and the letter J sign at Michael’s.

My sister-in-law cut out giant letters, which we hung from the ceiling in the food room.

My sister-in-law also made this awesome palm tree!

Birthday boy fell asleep sitting up before the party even started!

We kept the food simple: pizza, chips, dip, jello.

In order to take advantage of family being in town, we had the party the Saturday following Thanksgiving. This meant it went on during THE game (OSU vs Michigan, for those who aren’t in the know). So, the adults watched the game while the kids played/did a craft, and we did cake and ice cream during half time.

Using chocolate sprinkles and black gel icing, I decorated the cakes to look like coconuts.

For a craft/favors, the cousins made ornaments out of cornstarch dough.

After the ornaments cooked, the kids painted them with watercolors. (Before cooking, we used a straw to poke holes into the ornaments so that post-painting we could string ribbon through the holes.)