Sunday, November 30, 2008

Second step to freedom.

Every day is a miracle for us and while we are waiting for the big miracle from God to happen for Alesia we set our next goal to be able to take her out of her room again and why not outdoor someday.  First step was made and we got with help from some good people a special need stroller.

As medical insurances in our country does not support any of our expenses with needed equipment,  we could hardly imagine, in the beginning of our journey, that we will be able to get all these equipment. This was possible mainly due to help received from people with good heart and some time the help received is beyond any of our expectation.  I do not know how I will ever be able to thank enough for this help.

While we were struggling to take the next step and get a portable ventilator for Alesia (which, by the way, is very expensive device)  we received one as gift from a very special person, a real Prince. Since he found about Alesia and her fight for life was always besides us and is supporting us in many ways, giving us strength and hope that this fight is not in vain. In his silent kindness  taught us  that God is working in, through and with peoples. 

How we will ever be able to thank for all this help and support? do not know the right answer now but this question open another question also: How will we ever be able to thank God for this life, for the freedom and trust that He is giving us? We can not, but for sure we can live our live being grateful for all we receive from Him every second and every breath. 

Therefore, until the Miracle will happen Alesia will use the ventilator received - a Pulmonetic LTV1000 - that will be adapted to the stroller Alesia has. The ventilator is a very portable and this mainly due to its shape and robust construction. It is extremely used for this purposes by peoples that require long term ventilation  and that does not want to consider this as a limitation.  In addition, this will also help us being more relive because we always have a backup for such important equipment. 

Hope that soon we will be able to post pictures with Alesia outside her room. :)

Saturday, November 15, 2008

Helping mommy!

You have to see this! I have learned, and now I am helping mommy to feed myself. You can see in the pictures below who is holding the syringe! yes, yes it is me, mommy is only acting that is feeding me.

Tuesday, November 11, 2008

Some issues around the trach: solved!

Some panic for my parent couple days ago while changing the trach bandage when a little blood was seen on it. So many worries and almost ready to go to the hospital but we did not, we cleaned very well the spot and we used some more "Betadina" than usual on the area. We checked the spot next day and we noticed that is getting better and next day even better.

My doctor said that this can happen because of the friction between trach and skin. A special treatment will be applied on area when trach tube will be changed next time. I would place some pictures before and after but I think is better if I do not (it may scare you).... It is very hard... every second something can go wrong and we might not know what to do, how to act on the situation....but this is the only way, it is our way and we have to take it. The reward for my parents is the fact that I am happy against all the odds and the difficulties that I am fighting with. I pray that God will keep us away from dificult moments and will do a miracle for me and for all children that are suffering and fighting for their life each breath.