Kaison’s Fight against the odds

On Father’s Day of this year our son Marek Kenneth cook passed away due to unknown circumstances...  We had no idea 

the following day Monday, June 18th my amazing fiancé and I went in for a regular weekly checkup only to find out there was no longer a heartbeat on marek. We were crushed you can only imagine the screams and cry’s coming from that hospital room that evening..... our one son (marek) was draining all of kaisons blood (as they shared a placenta) and kaison had very limited time before he was also gone.  Our twin boys were born prematurely at 28 weeks.. via crash C-Section. We found out later that they had a hard time telling us which twin had passed as Marek somehow made it over to Kaison and hugged him before he passed. When the Drs did the c section they said they were clinging on to each other.

our son kaison is now in the London NICU fighting for his life (stage 4 brain bleed, with degenerative brain damage and respiratory failure) 

we are so very lucky and thankful to have him and still grieving the loss of our other son no  parent should ever have to bury their child... we will be lucky enough to see marek grow through kaison and will be able to imagine how mark may have been being identical twins 

 we are in need of help to gain funds to not only move closer to the hospital and his team of Drs. Here but also as we are going to have a long long road ahead of us. He will be here for a while and we are going to need regular weekly check-ups with doctors even once he is released for a few years to come. We are also in need of acquiring special monitors and potential medical devices for him. The blood clots in his brain are pushing against his developmental Portion of his brain and he may have cerebral palsy, difficulty walking and talking
Our family would appreciate even the smallest bit of help. Thank you.
so over the last couple months we've been in London 3 4 times a week with regular checkups with developmental neurosurgery respitory physio occupational nurse practitioners dietary plus a few more but....
As of Wednesday, November 28th Kais back in Hospital from hydrocephalus (ventricles in the brain are filling with fluid and causing pressure in the brain and head swelling) you should have seen my poor child's head he looked like.. K not to be funny or mean but like josh said his head went from normal size to light bulb looking in a mear 4 hours it was terrifying 
see above yeah that was an hour after tap (they stick a needle into the brain and drain fluid from ventricles this was his 4th) and that is not normal for any baby. Kais going for surgery on Wednesday, December 5 to have a lifelong shunt put in to drain the fluid into his abdomen. He has a 30% chance within the first 6 months of getting a shunt infection and a 50% chance its going to fail meaning back for surgery 

Hes  had some testing done over the last couple of days and have only had some results come back, as of now we know he has Cardiomyopathy (progressive heart failure) he's got a spongy scarring ventricle in the left side of his heart with a heart murmur and enlarged heart. There are 4 stages and we have no idea where he stands all we know it's the leading cause of heart transplants in children there is no cure and it gets worse 

They also believe he has a bleeding disorder as his clotting numbers or out of wack and every time they touch him he bruises badly or bleeds everywhere. 

He's currently fighting an Infection (possible RSV) and he's got Optic Atrophy( optic nerve dying due to pressure on the brain) so he may be legally blind but we've got to wait for specialist to do his testing

plussssss he's got high muscle tone in arms and legs and no tone in the abdomen or neck he's 6 months old and still cannot lift his head up. So drs are thinking spastic CP

my poor husband worked 2 days and is now off work again and the Ronald McDonald house is full so we're staying in a hotel by the hospital while our poor son fights yet again and were away from our other children.

Kaiaon just needs to catch a break he deserves it he really does and even though he's spent the majority of his life in the hospital he's the sweetest most amazing baby ever he doesn't scream and cry he sleeps and tell you stories and I just pray they can help him and I won't have to bury him next to his brother im not sure well survive another loss