This entry is meant to be a helpful one as I took the time to share products that have made living with Dup15q a little bit easier because the struggle is real and anything that helps us get through the day easily and peacefully is a God send.
1.Keekaroo chair This chair with his seat belt is where Lucas eats his meals. It is adjustable, grows with the child, comfortable and sturdy. We have tried booster chairs in the past but they were just not safe as he would push back tilting the chair for a fall or would stand on his chair and try to climb onto the table. The seatbelt definitely helps keep him from wandering off.
2. Tomato glasses : Tomato Glasses Frame Specialized for Kids (TKAC1) : non-slip, adjustable, ultralight, & safe (FDA Approved). These frames were invented by a Korean father of a child with poor vision. Neither Kaiser nor our VSP provider have accounts with the distributors for this product (perhaps because they are a Korean company?) so I purchased them online at Amazon and hope to get reimbursement once we put the prescription lenses in them. It has many adjustments for comfort - much appreciated as L flings them off all day long.
About the Product
- Specialized high quality frames for babies and kids
- Adjustable ear tips
- Adjustable nose pads height
- Detachable headband, extra ear tips, & nose pads are includes in a soft case
The best glasses for L so far. We have tried the wire framed "Dilly Dally" brand which are awfully cute but don't seem as comfortable as the plastic frames like tomato glasses. The Miraflex glasses don't accommodate for the flat nose bridge of most little children and I often find them sliding down his nose. They are, however, very durable.
We were able to have our optometrist insert an extra nose piece from the Tomato glasses onto the Miraflex frames. It keeps the frames away from his eyelashes because without them, the lenses are literally touching his eyes. No wonder he keeps flinging them off.
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| Tomato nose piece on a Miraflex frame. |
3. MacLaren Elite Stroller
Lucas still fits into his other regular strollers we had like the Peg Perego and MacLaren for toddlers but since his legs got longer, he would continually stop the stroller from moving by placing his feet on the ground. We hope to use this stroller for a long time to come. We were able to get a letter from our pediatrician for need and received reimbursement through our medical reimbursement account.
About the Product
4. Sensory chew necklace (click for detail)
L still bites into his fingers quite a bit. His left index finger is chronically swollen from all the biting. The chewies help redirect his sensory fix from his finger (and hand) and we have gone through many of these. There are definitely ones he likes better and I think the silicone ones that are softer are preferred over the hard plastic ones (dark blue) although the latter has ridges for greater texture.
About the Product
These chewies aren't cheap but I found L really likes a few soft ones from Babies r Us.
These are definitely easier on the wallet. RazBaby Fruit Teether
I found these by happenstance and am forever grateful to have found them. Seriously, sometimes I think someone in heaven is really helping me out!! It is a must for when we dine out. These are used as car seat for kids in China but we use them on chairs at restaurants. It has a 5 point harness to keep him in place. As he gets older, he is better at trying to finagle his way out but still, it buys us time to stop him from wandering off. And, they are cheap! I bought this one for $15 on ebay. We bought a $300 GoTo Seat but ended up never really using it because it it too cumbersome to carry. We may use it when we need to get on an airplane and hopefully the airlines will allow us to use it in flight.
Oh, and those black things on the bottom of the chair? Those are bed risers so that he is eating at our level and is not peeping up at us from the edge of the table.
An alternative to bedriser is a product called the Kaboost which basically does the same job. I found the bed risers were easier to insert than the kaboost.
And this is what it looks like when he is on it.
Also, we must have a DVD player and noise reducing headphones so he stays calm. He only watches a few of his favorite DVDs over and over and over again. When we introduce new ones like Veggie Tales and Sesame Street, he loses interest. The videos must be simple, no plot, not a lot of talking and be very colorful. His favorites include PreSchool Prep series for numbers, colors and letters as well as a few Baby Einstein videos. It also helps if there is a lot of music in it. We recently purchased the Ellipsis for kids for a discounted price after renewing our cell phone. We haven't tried it yet but hopefully once he starts with autism apps it will come in handy.
EZPZ food tray : We don't use this tray as much but it really stays in place so he can't swipe it off the table.
Table edge protectors
We protected the sharp edges of the stairs with table edge protectors (Gabe's idea). L's gait is still not the best and fall risk precautions are always taken.
Cloth diapers: Motherease and The willow store diapers: Recommendations from two Duper moms. Love both brands but the bamboo terry material from Motherease is soo soft. I know it must feel more comfortable to wear than the scratchy plastic disposables he has been wearing so far. The Willow brand runs a bit small but it is one size and can be used from infancy up to 45 lbs. I am hoping these will help with potty training or at least, help him to recognize the coldness associated with peeing.
Converse High Tops: Honestly, sometimes my day revolves around putting his shoes, socks and glasses back on. He really has a talent for taking his shoes off just by stepping on one foot on top of the other. I have invested so much money on shoes but the one that seems to work and the one the teachers are always happy with are Converse high tops. He really can't get out of these although with some persistence, he has taken them off, too! It's a hidden talent!!
Recently, I purchased the Gold Pigeon sandals that has multiple adjustments for better fit. I am hoping these will work out for the summer.
Scout: This is his absolute favorite and cannot live without! We are on our third Scout. Hard to clean but I bought this small steam cleaner that zapped the out the cheesy smell and stains! I applied just a small amount of mild nontoxic detergent with a toothbrush before steaming. We also needed to use dark duct tape for the light up button because L would put his eyeball right against it burning his eye out.
In the past, we have tried products like the Spio Vest (spioworks.com) , Dafo orthotic braces, soft helmets, knee pads and walkers. The knee pads and the walker were definitely helpful when he was just starting to walk and he would have numerous falls. Not sure if the DAFOs, the helment and spio vest made much difference for him.
Are there any products that has helped you with your Dup15q or special needs child? Please, feel free to share!
That young boy looks cute on those glasses. Im looking for eyeglasses frame for kids, preferably that one he is wearing
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