Our observations

In this part of the site we are trying to summarize and publicize observations gathered during the treatments of our children, without the need of completeness. For the first time, we can only talk about our own observations, but it would be wonderful if most of you wrote us how you were able to solve problems. Do not forget the purpose; the purpose is to aid other people!That’s why, if a question has more than one reflection, we will try to publicize all.

What to do if the child has soft cranium?
When our little daughter came home from the hospital, it was a very great problem how to lay her. There were many problems about the fractures too, but we could not do anything with the backside of her cranium, because it was completely soft. Only her cheekbone was hard, more or less.
We did not know that this would change or not, we could only trust that her little head will be harder in time.
Of course, as of many things, we could not be sure of it. We thought that if it would happen one day, we must not allow her cranium to stiffen in a flat form. Laying her on her side was impossible many times because of the fixed, broken limbs.
Then my wife had a great idea! She scrolled textile nappies into a 4-5 centimeter fat welt and shaped this welt into a closed ring. This “O” letter was covered by another nappy, and the baby’s head was placed on it. In this way, her head did not touch the mattress.
Months passed away and her head became really nice and shapely, indeed. Moreover, whereupon we did not depend, her huge fontanel on the top of her head became spectacularly smaller. The brain had a free way to grow and this had a favorable effect on the forehead, on her optical and acoustic organs.

Choosing the baby carriage
Well, this was neither an easy task. Leastways for our family it was not easy.
The carriage has to comply with many expectations. From the diseased child’s viewpoint, the most important requirement is the suitable roominess.
In any case, the child must have enough room even at chilly days when he or she is wrapped. Usually, the baby carriage makers are unsparing with the length, but as regards the width, really horrible things can be seen on the market. If the carriage is strait, the child may be pressed by the sides of the baby buggy and this may cause even some kind of fracture. But if we have a wide one, then even putting the child into it and taking him or her out of it are virtually risk-free.
In our opinion, the durability is a very important aspect. If it is possible, do not buy a substandard product, because these children do not grow so quickly, in this manner the baby baggy might be needed through years. In this way, you do not have to buy a new one in every year. I notice that, the over-designed baby carriages did not prove themselves to be useful, and if they are perfect, they are also so expensive. Of course, it is matter of taste and depends on money available, but in our opinion, there are good, durable baby carriages on moderate price category too.
Moreover, if you have to move the carriage up and down on the stairs a lot, then its weight is not negligible and if you have a car, test its transport possibilities before the purchase.

Helping the baby to sit up in the baby carriage:
Like most babies do, our little daughter was just lying in the baby carriage at first.
But the time had come when she became more and more eager to know the outside world, and she wanted to sit up and look around during the walks.
Regrettably, there was a huge problem with this. The little girl’s bones were so brittle. Because of her weak bones and muscles she could not hold herself at all. When she was sit up, she folded to the right and to the left.
We knew that this would end in some spinal curvature. Moreover, she was not able to breathe normally with this bad posture.
Then my wife had another excellent idea: how about we putting tennis balls under the spongy cover? So we bought six balls. We put the child into the baby baggy, and put the balls too, under the cover. Two balls were next to her neck, one on the right side, and one on the left side. In the same way, two balls were next to her body, and two were before her botty. With this simple solution we have succeed in prevention of bad posture. Furthermore, it was not uncomfortable to the child. But it is always necessary to check the balls to be in the right position.

About the difficulties of clothing the child in winter:
After we finally found the suitable baby carriage, we faced another problem on the edge of winter. What kind of winter cloth would we have to buy to the child?
Greatcoat or overall cannot come into question. It was impossible to dress the child up without causing fractures. But if we could have dressed her up, she would not have fitted, because some of her limbs was always in splint, sometimes two or three limbs were in splint at the same time. This fact inhibited us from dressing her up in the conventional way, because the clothes were simply too small.
After a very long searching, we have found such a fur-bag which was not a slip and had no zip. We could enswathe her simply into the bag and fix her with velcro. For them who have such a brittle child than ours we advise to buy or have this bag sewn.

Some more additional things about winter clothing:
We have to go to the capital city frequently the whole of the year, because of examinations and treatments.
I am sure that every child is different, but ours is in a bath of perspiration by the time we arrive anywhere. In spite of our efforts, she is all of a sweat in the car seat every time. For aught I know, this increased perspiration unfortunately is one of the symptom of the disease.
Getting off the car is the main problem. I do not have to prove that how dangerous this few minutes are, chiefly at 5 degrees below zero.
To solve the problem, we managed to make a very thick, square blanket made of polar, with a hood on it. One of us takes the child out of the car, the other one hooks the hood on the child’s head with one movement. Eftsoon, her head, neck and back are protected against the coldness. The blanket proved itself to be very useful, we advise it for everyone who has little child.

The playsuit and the undergarment:
In the very serious case of the disease, not only the overclothes, but also putting the undergarment onto the child may be a problem and may need special attention. One animated gesture, and a new fracture befalls. For this very reason, most of the baby clothes are unfit for these children. Clothing the child is more difficult to fulfil if the baby’s arm or leg is in splint. In this case, his or her limbs are rigid, unable to fold; dressing the baby up into a clothe which is not open enough is impossible.
Regrettably, the baby dresses on the market do not comply with our special needs. Maybe it is possible to open it, but not sufficiently. Sárika was lying in an incubator through 3 months, because she needed only a nappy there; the incubator ensured the right temperature.
Additional difficulty is the malformed limb after several fractures. Because of the weak muscles and the deformities, the child are unable to cooperate us when we are tyring to dress her or him up. Finally, after a long exploration, we have found a dress with short sleeves and snap fasteners on its full length that was fit our daughter. But we did not find such a dress with long sleeves. In order to not let her cold, we cut the ends of a pair of socks off then her arms were sliped into the socks.
Later, we have found a dress with long sleeves and snap fasteners. We had to always pay attention to prevent the fracture what the child could cause for herself, with pulling back her arms in the hanging sleeves.

Fixation of broken arm:
Our daughter had many broken arm in spite of the most careful attendance. Her arms were breaking continually, almost one after the other. The doctors were trying to find the optimal solution. They gave a chance to the plaster also, but it was absolutely useless because the plaster is too heavy, it would have caused another fracture.
The most effective was the splintering. This kind of splint is a metal ribbon with sponge and it can be bent into the wanted form. Its advantage are the light weight and the simple manageability and it is detachable easily. The splint does not mean such a big torment than the plaster does. These splints were fitted onto her arm and whiped round with bandage. In the interest of better fixation, Ramofix net was pulled on her splinted arm. In order to not let her broken arm hang loose, we pulled a big Ramofix net on her body and took her splinted arm under this net fixing it to her body. We put a large, thick band onto her chest to fence it against irritation, and cut a hole into the net to give her little hand free way to move. This calmed her down, true she could not move her arm because of the net but she could grab and play with her hand.
The dress with snap fasteners was very helpful in this matter too because we could slip her hand out between the snaps.

Mirror in the bed:
Well that is odd! I cannot remember clearly what was the source of the idea. Maybe the good many injuries. As I mentioned above, our daughter’s limbs had been always in splints. Her possibility for moving had decreased mighty for a long term. At first she did not know her way around very well and she was in pain many times. We were trying to be always with her but it was impossible through the whole day. When she was in pain, she could hardly stand the loneliness. Then we had an idea somehow, we put a mirror in her bed not to leave her “alone”. Of course it was not a mirror made of glass but a 40*60 centimeter large thin board with a mirror-looking foil pasted on it which had been bought at a stationer’s. To improve the looks of the mirror, we had a spongy textil frame sewn for it.
Once, we picked up on that the child was watching herself in the mirror continually, she was bored less and cried much less than before, so she became more balanced. Sometimes she even kissed her image. We advise it also for families with little ones. If we are traveling to anywhere, her mirror is always with us. She feels at home thanks to the mirror.