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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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.

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Sleep Apnea and CPAP – The Not So Sexy LifeSaver

Respironics CPAP machine and ResMed mask

One of the health issues that some dwarfs must deal with is sleep apnea (when you stop breathing while sleeping). This is a serious condition that must not be taken lightly. Unfortunately, both of us were diagnosed with severe obstructive sleep apnea in our 30’s. However, we made sure to take care of our health and we both are being treated. As our pulmonologist says, we have his-and-hers CPAP Masks. Here are some important points about sleep apnea:

  • Sleep Apnea is very serious and can cause a multitude of health problems.
  • While Sleep Apnea is often associated with obesity, you can still have apnea if you are not overweight (or even if you are underweight!)
  • Snoring does not always mean sleep apnea, and sleep apnea does not always manifest as snoring.
  • You can have Sleep Apnea and not know it! Not everyone with sleep apnea experiences extreme drowsiness.
  • Some types of dwarfism are associated with a higher risk of sleep apnea.
  • Men and women exhibit symptoms of sleep apnea differently! Women are less likely to have typical symptoms such as snoring, daytime sleepiness, and pauses in breathing. Restlessness, mood changes, and insomnia are more likely.
  • Apnea can be either obstructive (a blockage of your airway caused by your tongue, soft palette, etc.), central (an issue with your brain signals related to breathing caused by spinal compression, etc.), or complex (a mix of both obstructive and central).

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Easy Closets Review

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.

 

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