Sunday, January 13, 2013

we didn't post from last year, the year that we would like to forget most parts, it has been something that it’s hard to describe, something that the people are not usually used to, however, it is behind us and our motto is really to stick to today, to live today as our whole life, to embrace all the good moments and to forget the bad as soon as possible.
Last part of 2012 was also terrible for us, we got two consequent infections, both Nina and Darin.
                                        Nina drives with Mickey Maus

                                                 Hello Kitty in our everyday’s live

                                                 Cuddling is always nice

                                             We like to go out, it is borring home all the time

                                                             Toast for breakfast

                                                              The Santa's hat that brought presents

                                                           Christmas party!

                                It is nice when there is sun outside, the weather is cold and we are in the car

                                                     The friseure is daddy's work

With Nina we were at a verge of going in the hospital, she was coughing non-stop, suctioning without end, her heart rate was going up tp 190b/m. We started new vitamins during that time, B1-Thiamine 200mg daily, Vitamin B2 100mg daily, Singulair(Montecast) which is a anti-inflammatory drug with suppression on the leukotriens effect, it is to believe that infections and the body's answer to them is worsening the disease and attacks the myelin sheet, the only protection coat that the nerves have and the only part that cannot be regenerated-4mg daily, than vitamin D 500iu, Vitamin B6 40mg daily and something new that we started called "Plant derived colloid minerals" with 75 basic elements in it.
Darin developed tremor, he could not do the things that he did before, it was terrible to se him following the same pattern of the disease as his sister has, so we started with aggressive treatment against everything that we can, we are giving him the same vitamins like Nina and additionally we started antiparkinsonian medicament Biperiden(Akineton) in a pretty high dose 2mg daily, considering that he is 11 kilos and the dose for grown people is 4 mg a day, also Gamibetal which is gamma amino hydroxy buteric acid, which is precursor for GABA(amino acid that is synthesized in the brain),it has antiepileptic effect and in higher doses it act as a growth hormone, but we took it for its inhibiting effect on the impulses coming from the extrapyramidal pathways in the brain, blocking the impulses that are going aside as a results of demielinization, starting from the basal ganglia trough the cerebellum and coming in to the end parts of the nerve conduction system binding at the cellular level with the muscles.


 It may seen complicated but as a fact it is when you have to decide what to give to your child that suffers from mitochondrial disease for which there isn't any therapy at all in the whole world, everything till now is based on consumptions and some poor experience with 
other parents and sometimes logical approach.

                            Santa brought really many presents

 It is also important for other parents to know that the doctors treating your child do not have all the answers and their experience in mitochondrial diseases is limited. That means that you have to take things in your own hands sometimes without waiting for them to decide what to give to your child, they will only give something that is in their experience and knowledge and maybe we can miss some very important and maybe lifesaving substances.

                                                  Dandy wants to be on top

So, to get back to the supplements, we are also continuing to give Idebenone, which is one of the most important free radical damage scavenger and antioxidant in mitochondrial disease, I think that there should be more studies conducted regarding Idebenone, we are giving Darin 300mg a day, which is the most higher dose for children.
After dealing with the infections for almost a month, we had the holidays before us, which made us very nervous, last Christmas eve (Ortodox-6th of January) we had to take Nina at the hospital, she started developing very high fever which began exactly after the new year,as a result of a withdrawal syndrome from all the opoide medicines that she was receiving during our 50 days hospital stay till 12.12.2011.  
There is one saying in our previous land “before Christmas and after Christmas you should be at home with your family”, but instead we were at the hospital with all the horrible things to come, like placing central venous catheter under anesthesia the night we came after unsuccesfully stabing 10 times Nina's arms, legs and head, tryng to find a vein and all sort of things coming after.
 So, you can understand our fear when it comes to holidays, we actually don’t know if we are allowed to really celebrate in this world, because it seems in a couple occasions that it all came as a boomerang right back at us. But we celebrate Nina and Darin, they are the biggest present in this world, their smiles are the biggest celebration there is!
After all, the holidays went fine, and we are so thankful to God for this, we actually bought quite an amount of firecrackers, which is a tradition here in Germany after the clock announce New Year!

                                                         Really big wheel

                Throwing some firecrackers on the square but the big party is in front of the hause 

                                                Happy New Year!

Our problems are getting bigger, we were rejected from the insurance company in our homeland Macedonia about receiving formular E 111 which is issued when there is emergency and when there is life treating situation when someone is traveling abroad, it is exactly what happened to Nina on 22.10.2011 just after our arrival in Germany, now we have to put the media and the press in order to explain the truth because we don’t see any other way!

I feel really powerless thinking beside our everyday things to contacting the media and the press in another country, it is just so disappointing, we had 3 insurances at the time and now nobody wants to accept the costs! We just want to be with our kids and do nothing else, it is the only thing we have!