Ventilation is more important because they don't have the muscle strength to get the deep breaths they need, which then affects the oxygenation. Oxygen is very important obviously but if they get the ventilation they need they usually don't need the oxygen unless they are sick. Some kids get proper ventilation thorugh bi-pap (assisted ventilation) non-invasively, but others who are weaker need a trach and pure vent which is done by surgery. Every child is different.
They are used for exercise. He can move his legs pretty well when they are lifted and you take gravity away. The slings support his legs and arms so he can kick and move. We put on music and he "dances". He loves it!
@rer3family Is the oxigen need more serious then a ventilator or is ventilator I am wondering which is more serious. I have heard of ventilation for all types SMA1, ALS, SCI quads, to name a few illnesses and accidents a nuro disabled with kidney person can end on dialysis, vent, and feedind tube situation. just trying to figure it out. How has Owen been doing since his brother Nate passed away? I hope Owen is doing well.
please tell me how you modified the simplicity mask to the softcap headgear. my son also has SMA type 1 and the simplicity headgear is too big. mikey is 18 months old. thank you for the videos. it is such a blessing to see a child and family as happy as we are
I hate the headgear that comes with the Simplicity! We take the Respironics soft cap headgear and fold over the front two flaps toward the middle. Then we cut off the little black part from the simplicity headgear that goes through the top slit in the mask and sew it onto the top of the soft cap where the two folded over pieces hit. It's kinda hard to explain. If you want me to send a pic to you I will if you send me your e-mail address. Hope this helps! I'm going to check out your videos!
The teacher comes to the house twice a week. When the weather is nice and the sick/flu season is over, we do take him to school about once a week, more for socialization than education. He gets most of his education at home from the teachers.
And yes, it's sad he has to go through all this stuff everyday, but don't feel bad, he's a VERY HAPPY little boy in spite of what he goes through. He is very special.
Ventilation is more important because they don't have the muscle strength to get the deep breaths they need, which then affects the oxygenation. Oxygen is very important obviously but if they get the ventilation they need they usually don't need the oxygen unless they are sick. Some kids get proper ventilation thorugh bi-pap (assisted ventilation) non-invasively, but others who are weaker need a trach and pure vent which is done by surgery. Every child is different.
rer3family 1 year ago
Ventilation is more important for sma
rer3family 1 year ago
I recognize very much of Nathan's equipment. I also have SMA, but type 2. I live in Sweden and I'm not very good at english.
I'm thinking of you. Hugs //Emma
Emmixen 1 year ago
how many diaper changes does he have in a day?
Chelseafc47 2 years ago
what do the slings do
MaddieTights13 2 years ago
They are used for exercise. He can move his legs pretty well when they are lifted and you take gravity away. The slings support his legs and arms so he can kick and move. We put on music and he "dances". He loves it!
rer3family 2 years ago
@rer3family If you dont mind me asking. What is it Nate has please.
Megatronmrs 2 years ago
Spinal Muscular Atrophy Type 1.
rer3family 2 years ago
larbacmc1 1 year ago
what are those things on his arms and legs?
pandarocker711 3 years ago
Check your inbox, I sent you the e-mail address. Thank you so much! Sometimes the best advice is from other parents.
rcmkbe1 3 years ago
please tell me how you modified the simplicity mask to the softcap headgear. my son also has SMA type 1 and the simplicity headgear is too big. mikey is 18 months old. thank you for the videos. it is such a blessing to see a child and family as happy as we are
rcmkbe1 3 years ago
I hate the headgear that comes with the Simplicity! We take the Respironics soft cap headgear and fold over the front two flaps toward the middle. Then we cut off the little black part from the simplicity headgear that goes through the top slit in the mask and sew it onto the top of the soft cap where the two folded over pieces hit. It's kinda hard to explain. If you want me to send a pic to you I will if you send me your e-mail address. Hope this helps! I'm going to check out your videos!
rer3family 3 years ago
Do you suction him right after his treatment.
medicaldud 3 years ago
i feel bad for him..i would hate to have to do that everyday...dose he go to school or get homeschooled?
sh0rty247omg 3 years ago
The teacher comes to the house twice a week. When the weather is nice and the sick/flu season is over, we do take him to school about once a week, more for socialization than education. He gets most of his education at home from the teachers.
rer3family 3 years ago
And yes, it's sad he has to go through all this stuff everyday, but don't feel bad, he's a VERY HAPPY little boy in spite of what he goes through. He is very special.
rer3family 3 years ago
what a life
grapessss 3 years ago
I would like to thank u for doing the video.
1992peter 3 years ago