This is one of Enna's routines for suctioning! She needs also chest pyshio befor hand and sometimes we need to do it more after. Enna also has her baths with being bagged! To keep her airway open. Her father normally does the bagging while I do the washing and rinsing in her care. Enna needs the bagger to breath like a form of cpr. This bagger has been used many times during Enna's destats and codes to give her the breaths she needs , at times when she could not breath on her own, due to her SMA the weakness in her muscles. Enna is then suctioned to get secreations out threw her trach. Enna often has secreations in her mouth and nose in which she can't swallow! Even for her to swallow them down, her muscles are so weak that the mucus and secreations related go into her lungs. This in which can cause peneama, or aspirations causing her or others in her case to drown and suffercate!This is Enna's daily routine from all hours of the day, at least every four to two hours. The secreations in her mouth need to be suctioned often at least every 15 minutes to a half hour or more frequant than that. But normally at least every 15 minutes.Enna's biggest trouble is that she cannot cough, so alot collects in her throat, chest walls and scatters around her lungs claiming her to be the victim.Some are able to use a cough assist, but in Enna's case here in Canada very few have much knowledge on the cough assist, and are still making the efforts to understand it. The affects of not couhging can cause infections , colds, and peneuma. What does that mean? It means that most die to this, the muscles are so weak and the need to cough is not there, there muscle are not there, the genes they need to signal from the brain to the spin to feed the muscle the protien for strength are not there. One thing though is that Enna's love for life, her smiles in which most lose because of the sma weakness/ the nerves very quickly begin to lose the battle, but Enna will always have the normal brain devlopement, meaning all around her is known, all she knows and loves she can see but can't touch on her own, all she hears and watches she intakes and remembers, all of her face expressions and what she feels inside is still there. All she is; is a person , a beautiful baby girl. A girl who can't walk, sit up, lift her arm, play with her toys as a child should, she can't breath without a machine or a bagger, her ribs can't grow properly for her lungs to develope properly and have the proper room to expand, her heat has a beat but the chest wall is too narrow that can have its risks, she can't have her first mashed patoes, her first takes of fruit, or snacks, because she can't swallow and all goes into her stomach. Enna is like many that is called rare and few. Enna's place in my heart ,our life, in my family,in her world has already made its way here. She is known, she is feel, she is understood, she has prayers and only a short term choice, because her choice and ours is not there! Why? Because there is no cure! Why? Because its so rare and not enough help! Why? Because the funding is behind and her voice can't speak because of sma weakness? Why can't anyone do something? Because the DR's hands are tied and researchers need our help, and our help needs yours. Why? Because its so rare that many lives would be saved! Why? Because families would have hope and happiness no more sadness!Why? So my child and others like Enna could play in the sand, go to the park,play with their toys,speak and eat from what they know and learn and like, so they can have a future and grow up just like your own!Why? So they can be given the choices, the goals, the life that is so rare! Can she play with your child? Why? Because isn't that whats fair for a child , a baby, the gift of life. Can you share the air you breath! Why? So Enna and other children can do the same just like yours and the healthy ones of mine. Why ? So Enna can grow up with her two other sisters and her two other brothers. Why? Because she has a family who would miss her and that life you can't get back once its gone. Why because there are others who go threw what we go threw and They also have a child with SMA, and those children have a family just the same. Why because those in memoral sites already have filled enough pages, and yet had a place that should be seen in their glory of their storys and strengths. Because their memories are what stay within so many hearts who know the joy of their start to the day/night they were born. Because peace can bring some sort of justice even though apart may never heal. So each one knows their fight was not looked past and unoticed and only known to us called families with sma! Let our angels smile and sing let those on earth continue to do the sma. Let the long journey of this war, this battle become one of peace, truimph, in all good human nature. Why? what is your child doing right now??? Why? What if they couldn't?
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Addy moves headby shannonkuester37,926 views
how was she not scard
webkinzrock96 3 years ago
She has gotten use to this. She has had to do it all her life, and will always have to.
GOOD QUESTION.
medicaldud 3 years ago
The qeustion about SMA and what we have to do for her. She actually smiles while getting suction and such. SMA is a gene that has a carrier . 1 out of 40 people are carriers. She would not have to do this for the rest of her life if there was a cure. The cure is on a a brink. Check out Christopher Reeve and see that life can change at any moment. People who have no true understanding will never understand ones truth. Never begin to judge ones life without truth of understanding it first.
llohin 3 years ago
How would you as a parent feel watching your baby turn blue and stop breathing and not be scared by that. How as a baby would you feel if you had no understanding of why you can't breath? Don't swallow your secreations for 30 minutes at all. Drink water and see what that feels like . SMA has 1 out of 40 people who are likely to be carriers. If I had one wish I would wish that there was a cure and that things were better. Never mock whats on the other side of ones fence until you have been there!
llohin 3 years ago