We dedicate this part to newly diagnosed families. All ideas presented here come from our own experience. We are no doctors and our advice should in the first place prepare you for communication with doctors. You might find out that sometimes communication can be difficult due to the rarity of this disease. No doctor knows every single disease because they have not encountered many since their studies. Our experience is the one we have gained by taking care of Bozhenka, that is better type I. but we think it can apply to all three types. For making things shorter and perhaps more personal, we call Bozhenka and others affected by SMA – SMAer.
- You can do something, it is not a hopeless diagnosis! The time is coming when cure will be available. Your task is to keep your SMAer in the best possible condition!
- SMAer mustn´t ever fast! Overweight is also not desirable. Regular and nutritional diet is the key thing! If you have doubts, ask your practicioner/nutritionist.
- Be extra careful with any infections. Learn strictly, even with initial feelings of tiredness (feeling that one is getting ill), to keep distance from your SMAer. Remember that clear breathing is the most important thing! That is why pulmonary rehabilitation is essential preparation for potential infections. Simple and very effective pulmonary rehabilitation are all kinds of pinwheels, whistles, trumpets and not lastly, singing. Preparation is not only exercising but also equipment. Suction unit, pulse oxymeter and cough assist are the three essential “assistants”. At the present moment we are learning with Bozhenka to use the cough assist. It will help in case of infection to clear the lungs without any invasive intervention. The child should get used to it in the time of relative calmness, so that he or she is willing to use it when needed.
- Strech legs because their muscles not being used shorten (hips, knees, shins). It will help you to avoid further complications. There are various orthoses. Ask your physiotherapist. If possible, think about some kind of a stander or a verticalization device. Recently we got an Upsee, which Bozhenka loves and we would love to acquire others. Why verticalization? It influences positively cardio-vascular system, gastro-intestinal system, prevents hip dislocation and not in the last place, provides the fun experience of new perspectives!
- Exercise any movement your child does. It should not be tiring! You would notice the next day, when your child would be sleepy. So don´t be afraid and slowly exercise. You can do in fact everything. You have to find the strength to do things, not your child! You are his strength and until you give up, your child will have great time. Just be careful with their neck and limbs, so that they do not get stuck somewhere ;) We try to exercise Vojta method every day and otherwise we exercise all the movements Bozhenka does. Ideal is swimming.
- SMAer is very intelligent being and that is why they need to do as many as possible things by themselves! Light toys, a tablet, a wheelchair, which they can control!
We are very happy that we have Bozhenka! Chiefly because SMAers like her are incredible fighters! They are full of optimism and they will always surprise you! Take good care of them, pay attention to their desires and they will give it back to you. They are extremely smart!
Dad and mom of SMAer Bozhenka