Learning about Leo

A part of the reason that I started this blog two months ago was to inform friends and family of Leo’s diagnosis. I couldn’t bear the thought of having to tell each and every person and reliving the experience over and over. It was painful and would often result in tears. A blog seemed like a good way to share our story and have everyone made aware of our situation before they met Leo for the first time. Along the way we have attracted some loyal Leo lovers (I just came up with that then and I kinda like it!). It is so great to have you all on board our journey with Leo and your support and encouragement really does mean so much to me. So, I figure that I should use this platform to educate you all a little on Leo’s type of dwarfism as I am sure there will be some aspects that you wont be aware of (I certainly wasn’t!).

Firstly, I want to talk a bit about the physical differences that Leo will have. A baby with Achondroplasia has a relatively long, narrow torso with short extremities (arms and legs) and a disproportionate shortening of the upper segments of the limbs. There is a typically large head with prominence of the forehead (frontal bossing), underdevelopment of the midface with cheekbones that lack prominence, and a low nasal bridge with narrow nasal passages. The fingers appear short and the ring and middle fingers may diverge, giving the hand a trident appearance. Most joints can extend more than normal. For example, the knees can hyperextend beyond the normal stopping point. These differences will become more apparent as Leo grows. While he has some features that are similar to his brother, he has his own unique look that we absolutely adore. And can we all just look at that little button nose! It is so kissable.

I’ve mentioned in previous posts that achondroplasia comes with some medical implications. We try hard not to get too caught up with this as it can get very over whelming, but at the same time it is important to be educated about them as there are things that we need to monitor. 

Health problems commonly associated with achondroplasia include episodes in which breathing slows or stops for short periods (apnea), obesity, and recurrent ear infections. In childhood, individuals with the condition usually develop a pronounced and permanent sway of the lower back and bowed legs.  Some affected people also develop abnormal front-to-back curvature of the spine and back pain. A potentially serious complication of achondroplasia is spinal stenosis which is a narrowing of the spinal canal that can pinch (compress) the upper part of the spinal cord. Spinal stenosis is associated with pain, tingling, and weakness in the legs that can cause difficulty with walking. Another uncommon but serious complication of achondroplasia is hydrocephalus, which is a buildup of fluid in the brain in affected children that can lead to increased head size and related brain abnormalities.

Leo is a very healthy and happy baby so we consider ourselves very lucky. However, because we know how important it is to monitor these potential issues we do take extra precautions. Leo is currently sleeping with a sleep apnea monitor. This is just a little sensor pad that is taped to his stomach and attached to a small machine. It sets off an alarm if his breathing stops for an extended amount of time. The alarm has never gone off so that is a good sign. We have also done an at home oximetry test. This was to check how his oxygen levels are while he is sleeping. Soon we will need to go up to Starship Hospital to complete an official sleep study. This is a more intense version of the home test that we did. He will be hooked up to a number of machines and the doctors will watch him all night to assess his breathing. We, along with our paediatrician are also keeping a close eye out for various symptoms of spinal stenosis. At some point Leo will need to have an MRI to check for this. This is something that I am feeling particularly uncomfortable about. Mainly because of the fact that he will most probably need to go under a general anesthetic and this can be problematic for babies with achondroplasia because of their narrower passage ways. 

So yes there is a little more involved with Leo’s condition than you were probably aware of. But we are confident that Leo will continue to grow into a strong and healthy boy with minimal (or no🤞🏼) health concerns. 

Thanks for stopping by to learn a little more about Leo. The more you know about his condition the more chance we have of creating a community that is aware and educated about dwarfism, and therefore accepting and supportive of Leo and others like him. 

 

A huge thank you to Olivia from https://ourlittlelionblog.wordpress.com/2017/08/19/learning-about-leo/ for allowing me to share her story and journey. 


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