Wearing Your Dwarfism on Your Sleeve vs. Strength as a Person With Dwarfism

I can go on and on as to how I got to this subject in my head, but I’ll try to keep this short and to the point.

Strength as a Person With Dwarfism

If there’s anything you can give your child with dwarfism, it’s strength. Strength to get through anything, even when the world is sometimes built against them. It’s something you don’t need to buy in a catalog, order online, or qualify for. But, the strength that you give your child to just live life to the fullest, without thinking they were gypped or swindled into less of a life just because they have dwarfism. It will be worth more than you could ever pay for or get assistance from. See them for them and not as “poor” them. Our life has NO limitations, despite our size. We ARE capable of whatever we want to accomplish.

Read More

Sleep Apnea and CPAP – The Not So Sexy LifeSaver

Packing to travel can be a pain if you have to include a CPAP/BiPAP in  your luggage. No matter how tall you are, the CPAP is just one more thing to lug around. At the same time, you need to keep this expensive medical equipment safe from damage. It helps you breathe while sleeping, so no matter where you are, you will always need your CPAP. Otherwise, even just one night without it can mean a really groggy, grumpy day to say the least.

Packing

I prefer to put the CPAP in a hard sided luggage and check it in with the other luggage, but this does add some risk if your bag does not show up on time. If you choose to pack your CPAP as carry-on luggage and go through security, be prepared to have them touch all the parts that go into your nose/mouth, etc. Since it’s a medical device, it should not be counted as one of your personal carry-on luggage. My husband usually asks them to change gloves before examining the CPAP so there’s no cross contamination. However, lately they the airlines seem to have relaxed their policies around CPAPs. We remove the CPAP case from the carry-on, place it in the bin, and they haven’t questioned it.

If you consider packing it in your luggage versus as a carry on, try to pack clothing around it even if you have a hard case luggage. Packing it tightly with your clothing would help prevent it from being tossed around so much. I usually pack it at the bottom (the part that is the bottom when standing upright) towards the wheels. It’s going to most likely be the heaviest part of your luggage, so it helps to keep it there.

Read More

Easy Closets Review

John Louis Home 12-Inch Deep Premier Closet Organizer-Red Mahogany Finish

We recently downsized into a smaller home so we could move from a 2-story house to a 1-story. One of the unfortunate aspects of the move was the loss of closet and storage space. In addition, it’s an older home with very dated closet organization (a pole across the closet and maybe a shelf or two). Having two dwarf parents and a dwarf child in the house, this became a problem real fast! We are trying to teach our dwarf child to be independent, so we did an extensive search for custom closet systems.

 

Read More

Choosing the Right Car Seat

Tiny Love Take-Along Arch, Sunny Stroll

It can be very overwhelming for a new parent to choose the many products they need to keep their child safe. The choice is especially daunting for a dwarf parents and parents of a dwarf child!

There are a few key things to keep in mind:

  • Your child’s back should be supported at all times.
  • Some car seats are very heavy. You may wish to try lifting different brands in the store before purchasing.
  • Besides being heavy, some seats are super complicated and difficult to buckle and unbuckle your child.
  • The process of securing your car seat in the car can be overwhelming. If you will not be taking your car seat in and out of the car very often, we recommend using the LATCH connection. These are usually easy to connect/disconnect.
  • Some car seats recline in both the front and rear-facing position, also called convertible. We preferred to have our child with achondroplasia reclined as long as possible until he gained good head control. We had him reverse seated until age 3, when he started going on the school bus.
  • A Back Seat Mirror is a necessity while your child is rear-facing so you can check on them! Also, it keeps them occupied and they feel secure knowing they can see you.
  • We had to put a lot of rolled up blankets and support to make sure he wouldn’t flop over. Babies with achondroplasia already have hypotonia (low muscle tone). We needed to find another car seat where he was very secure and didn’t flop over as much. In place of the rolled up blankets, we found the Summer Infant Snuzzler to be helpful.

Read More

Diapers and Changing Tables

Diaper Choices

If you have a dwarf child, you most likely will be using the same size diapers for a lot longer than you might expect! It’s probably worth the effort and expense to try a couple different brands to see which one works best for your child. For both of our children (both dwarf and average height), we preferred Pampers Swaddlers and Pamper Baby Dry. For pull-ups, we also tried both the Pampers Easy-Ups and Huggies Pull-Ups and greatly preferred the Pampers.

Most likely you will start in the preemie/newborn size and then stay in Size 1 for a while. The Diaper Sizes Guide can help you determine when to move to the next size and also which brand might work for your child’s weight. They recently added a list of Current Amazon Diaper Coupons and Current Amazon Formula Coupons.

It is a little like Coke vs Pepsi, some parents prefer Pampers while others prefer Huggies. At least for us, we found that Pampers diapers and pull-ups worked out much better.

Read More