Sunday, November 11, 2012

it has been a while, there is this thing called parent of mito-kids with 25/8 engagement, the time is precious to us, we really try to use it's max, trying to seize every moment with our precious children. We like the mornings especially, Nina, my wife Tanja and I are up about 8 o'clock  and Darin sleeps in the other room with his grandma until 9, we try not to wake him, but actually we just can wait for him to wake up so that we can hug all together in the bedroom. At evenings, Nina likes to be quiet around her and she goes to sleep about 9-10, but her brother doesn't even think about sleeping before midnight.
So, one stays with Nina in the bedroom and one plays with Darin in the living room. Tanja puts Darin then to sleep with Snowhite or the Beauty playing on the dvd player and than brings Darin in the bedroom.Than we kinda sleeping till 4,and Darin is again wake and needs some rocking and my wife takes him to the living room with his grandma. It is really big temptation for all of us to sleep in one room, but we can't imagine not to, because those moment are some of the most beautiful in our lives.Than mornings again we play some Snowhite or some other cartoon in the bedroom again. Until now we are very much thankful to Snowhite and Belle, they are really helping us in our lives.

                                                                  Sister-brother love

                                                      Driving the wooden train in the park

                                                       Posing and playing important

Darin is driving Nina and mama

We are almost finishing the EPI Protocol, we have only one more big day with lots of investigations like sleep study again, blood work, ECG, EEG, ECHO, urine samples, even X-rays on the chest but i will try to convince the doctors not to do that because we already had like 10-15 x-rays in one year, i think that's enough.
Nina is improving slow but constantly, i think stopping the disease progression will allow the body to recover by itself, all dough very slowly, because as you know the nerve tissue doesn't repair itself, it is only possible for the brain the learn new pathways.We are also reducing methadon in this period and it all affects her condition, however she is real sunshine.

Nina has a baby called Ina, and there is Hello Kitty as well!

Our other little cup cake is making us worry, he doesn't getting enough developmental milestones as he is supposed to in the last couple of months, his walking actually regressed and he developed intermittent tremor and nystagmus. That means that he is already showing symptoms of the disease and that we didn't have that luck to be symptom free, not in our case, not in our lifetime.
It is life without future for us, we only live in the present, it is funny how some people think about the future and making plans for it, and we simply choose the present, because we don't really have any other choice, don't we?

                                                       His favorite bike is called Puky



                                                                   More Lego!

                                                                   And more Lego!

                                                     There are some funny lights in the new moll

                                                                           My boy!

So, we spoked with our doctor about enrolling Daring to the EPI study as well, but we did not get approval from USA, we have to wait for press releases in the next period to see how patients out of USA will be able to join the EPI-Protocol, or is it going to be a study like they are conducting it now in the states where the children are getting either placebo or EPI for 6 months, than they have one month pause and than they receive opposite either EPI or placebo for 6 months, and eventually they all get EPI after one year.
For now our doctor thinks that we should wait for EPI in the next months before deciding to give something for Darin's tremor, but we anyway started giving him Gamibetal(gamma hydroxy buteric acid), because it stopped Nina's tremor when it started when she was 1 year old.
We have good experience with that medicine and we now that it can not harm him. The other problem that we have is giving him enough calories that he needs during the day, his appetite decreased accordingly to his developmental regression, something that we never had as a problem with him before, and now it is our main issue every day.

                                                     Bike driving on the river Rhein

There are some friends too

                                                          Playing with the puppy

Some playground fun

                                                      His favorite toy-driving wheels and cars

                                                        I like when they are all over me

                                               We are sun-bathing any time of year

There is also something that we like to try, it is called
 "Preemie growth project"
they'we seen very encouraging results with supplementing premature babyes and children with neuromuscular diseases with plant colloid minerals extracted from mines from plants captured 100 milion years ago, and they are consisted of 72 minerals, which is thought to be helpful in giving the body everything that it needs for
 adequate growth, it is improving the appetite and the muscle strength and tone, we like to try that, parents are describing lots of improvement in their children.

 Lets try something new,like eating an apple

There isn't much more to be said, we are praying for stability and doing what's best for our children, we don't have really much help from anybody, especially not our family, there is one girl Aleksandra from our home country that is really helping us, she is like a family to us, now we are trying to arrange some papers for her so that she can get a viza for Germany and my wife's mother can go than back to Macedonia because she still has to work there and it is hard to make her stay with us even that she see's how much we need help.
There isn't any other family left, my mother died 2005, she was a parent that every child could wish for, if she was alive i would not ask for any other help at all, i hope that we are those parents for our children the way she was for me.
 My other family decided to quit on us even that they knew how sick Nina was and how terrible this disease is, they didn't even ask how Nina and Darin are doing all year, but there were a lot of supportive messages from strangers that are really making a lot of difference.
Just for the record, i know that i would not do the same for anybody, especially not my family if their children were sick, instead i would try to help them in any way i can.
But only a parent with mito-child can really understand what i am talking about and how much actual "physical" help is required, if your child has tracheostoma, that means you have to suction 24/7, that means you have to change the tracheostoma band everyday, that you have to change tracheal canulla every 2-3 weeks all alone, if your child has a PEG GJ tube, that means you have to give milk, you have to give water, you have to give medicines, you have to change the tubes every day, you have to put water in the tube after giving milk so that the tube would not be stuck, not even have to mention diapers or how taking a bath can be a challenge, then you have to change pumps when going for a walk, you have to put all those devices charging regularly, you have to deal with things and suppliers every month because you need a lot of things for your child, for example, we use 900 suction catheters monthly, you have to go to your pediatrician for prescriptions and hospital referrals, you have to work out every day to prevent contractures, even if your child is crying and has excruciating  pain, you are pushing her legs and crying inside your self also, some of you don't know that physical activity and exercise is one of the weapons to fight this horrible disease, you have to do that every day in that way your body produce more energy and you hope that your child's body is getting stronger, but can you make one 1 and a half year old kid to walk against his wish and possibility and push and do things that no other child his age is doing? How can you make Nina be more physically active when all she can do is looking with her beautiful eyes and breath on her own, or exercise(stretching her legs and arms) without causing her pain?

                                                             Our beautiful princess

Hello Kitty is Shiki-Niki

                              Daddy has funny methods for putting the kids to sleep-he goes first!

We are fighting, Nina and Darin are the biggest fighters i have ever seen, they are our heroes, our everything, our universe, and we are fighting by each others sides forever.

All together on the roller-coaster of life