Ask Away…

Thanks for the awesome emails and mssgs. Yes, feel free to ask anything, I’m not sensative. I will do my best to answer or find an answer! Soon, with permission, I will post your questions and the answers I’ve given. Mark your email “private” if you don’t want your name mentioned. Thanks again!

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4 thoughts on “Ask Away…

  1. Today my husband and I went for our 20wk ultrasound and the doctor informed us that our baby is showing signs of dwarfism, he/she ( we don’t want to know) is only messuring in the 5th percentile with a few other things. I went down and had a bunch of blood work done to help them determine everything. Did anyone else have these issues when they found out? Do we need to purchase a special car seat and other equipment? I do apologize in advance if I sound insensitive but I assure you we are not trying to be we just don’t know.

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    1. Hi! Sorry it took a bit to reply. Never be sorry for having questions or concerns about your child. It is totally normal, and totally scary. This is new territory for you. You had one future planned and now, without warning, a new one has been set in your lap. Rest assured this new future will hold magnificent moments and an equally beautiful baby who will amaze you.
      Every parent who finds out while baby is in utero has challenges like this. I remember one doctor explaining it this way, “you know, like snow white..” . That really only confused me. I made the mistake of looking at medical photos of babies with dwarfism on the internet. They look nothing like my baby did. Dwarf babies are the cutest babies!
      They will continue to monitor and measure your baby. This will continue for the first few years of their life.
      There are over 200 types of dwarfisms. My son has the most common, Achondroplasia. But depending on the type your baby has, your experiences and challenges will be different.
      There is a pituitary gland problem for one type of proportionate dwarfism. (Just like an average stature baby only reduced in size). This is the ONLY type that is “curable”. Some forms of dwarfism are disproportionate, maybe the arms and legs are shorter, like my son, or something similar. There are also proportionate dwarfisms that are not curable.
      It is normal for you to feel a sense of mourning. After all, you lost something. But remember you gained something too.
      Little People of America is the premier organization in the world for dwarfism. They have the best doctors who specialize in this. Please go to lpaonline.org and check out their medical board for a specialist closest to you. You will also find out what district you are in. Becoming a member and having Jax grow up in that environment with people just like him, (and parents just like us), is the best decision I have ever made.
      You will most likely need a special car seat or car bed. Many hospitals loan them out to you. He/she may need to go home with a CPAP (it provides continuous air pressure. People with sleep apnea use them.), and a breathing or heart monitor.
      Always ask your dwarfism specialist what he recommends.
      You may need a prosthetic for nursing, if the baby’s mouth is too small. You should take infant CPR classes.
      I would love for you to elaborate more about what specific difficulties you are having so I can address each one. You can also contact me by email at jenovesia@gmail.com. I will be here for you throughout.
      Finally, welcome to the wonderful world where nothing fits. From strollers to potty chairs, to school desks and onesies. But that’s okay, it gives you a chance to be creative!
      Please take the opportunity to read Welcome To Holland, found on this website. It definitely changed my perspective.

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