Custom Kettler Bike Modification

Kettler Oceana

Our Physical Therapist at CCS modified a Kettler Kettrike Oceana for our dwarf child. We’ve received multiple requests for details on how this modification was performed, so below are some pictures to assist with doing the same for your child.  Our son has a 9″ inseam and is on the 3rd percentile (height for weight) on the Achondroplasia Growth Chart.  So as you can see, even with the smallest of LP children, you can modify this store bought bike without welding or major modifications.

In addition to the tricycle, our therapist also used a set of foot cups and pedal blocks. These attach onto the existing Kettler pedals and have velcro straps to help keep your child’s feet in place. They are removable when no longer needed. One place to buy these is Amtryke as they make customized Kettler bikes for children with special needs.

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Halloween Costumes for Short Children

DC Comics Superman Baby Bunting Costume Superman Print, 0-9 Months
We always loved Halloween growing up and it continues to be a favorite holiday among many children. Unfortunately for those of us in the LP world, it can be difficult to find a costume that fits well. There are so many selections available for everybody from infants to adults online and in the mall, but they’re built for the average (average height) person! Here’s some tips we’ve found from our past experiences:

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MRI and Anesthesia: What to Expect

Our dwarf son has had multiple MRI’s and CT scans, so we’ve had some extensive experience with anesthesia. In addition, we have had MRI’s and CT scans done as adult LPs. Here’s what you can expect for MRIs without contrast:

The length of the scheduled time for an MRI will be much longer than the actual imaging requires. From getting them out of street clothes and dressed to going under anesthesia and MRI imaging then recovery, it could take an hour or two. They don’t normally allow anyone else in the room, but parents usually are allowed to stay so you can ask. Anesthesia would just be general by gas or injection, just a little. Either way, they usually determine the dosage by weight. They will put earplugs in his ears because even though he’s under anesthesia, your child will be able to hear it. IT IS VERY LOUD!

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Cord Blood Banking – A Difficult Decision

Among the many difficult choices new parents must face, one is whether to bank their child’s cord blood. For both our dwarf and non-dwarf child, deciding how to proceed was no easy task. We attempted to research whether there was any special benefit for LP parents or parents of dwarf babies to bank the cord blood, but we did not find anything concrete. And according to the Cord Blood Registry, “for inherited genetic conditions, the child will not be able to use his or her own stem cells. A matched sibling’s stem cells would be the first choice.” If you find any published research showing an extra benefit for cord blood banking with dwarfism, please do let us know so we can spread the word!

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Mama Said: Go See Your Ortho and Get Checked

Who said being a stay-at-home mom is not dangerous? I slipped on our glossy, 80’s kitchen tile this morning and then banged my head really hard on the wall. Thankfully, I didn’t black out. But, I did have this shooting pain throughout my body and seriously thought I might get major spinal cord injury from it.  I fell on the carpet, which cushioned my fall.  Still, it was a couple of minutes where my body was numb, especially my right arm, which has the most symptoms from my spinal compression.  I just laid there in tears.  Meanwhile, my LP son just thought it was funny and couldn’t stop laughing.  Stunned, I clarified to him that I’m really hurt.  He still continued to laugh.  The baby thought that because her brother was laughing she should laugh too.  In fact, she thought it was Mommy playing, so she tried to get on my back.  I screamed to get her off me . . .  there was nothing I could do to get them to take me seriously quickly.  Feeling helpless, I yelled sternly to get the phone so I could call my husband.  My son got it, but still continued laughing.

  • Dwarf Mama’s Lesson Learned:  Never play games with your kids faking injury. They wouldn’t know if you really need help.  I never play these type of games with my kids, but other people do.

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