Kalani , Bravest Little Warrior I am Proud to Know

Hi my name is Kalani Kaevon Joshua Eziekiel and I came into this world febuary 16, of 2008. I arrived in this world in the usual way, and my labor only took about 8 hours which is pretty good from what they tell me. I have a brother who is 5 and my sister who is 10. I would like to see them more but most of my time is spent go into the hospital and then back home again.

From what they tell me I have a few challenges to deal with in my life. when I was born my heart wasn't fully formed so I have 2 chambers instead of 4 chamber like everyone else. I get out of breath very easily and I can only do my standing exercises maybe a couple times a day, and my mom helps me of course as I 'm only 10 months old.

What really makes it difficult is that my muscle tone is not as toned as it could be as I was born with "downs syndrome". Alot of other babies like me are born this way. What this means is that my muscles lack the normal tone, which means I have alot of difficulty holding my head up without dad or mom's help. I'm not crawling yet but I'm getting better at rolling on my side, which the therapist says is great progress. Gee, I 'm only 10 months and I have a therapist, what gives? Ha , Ha.

I am one of the few who doesn't take food by mouth at this time as I have a condition called "Hirsch Sprung" . In this condition the parts of the large and small intestine aren't fully formed so they are not able to intiate the parastalytic action of moving the food through the intestines like my mom and dads do. But I have this cool "Colostomy Bag" which they did an operation and now my "stoma", (anus) is outside my belly with a bag covering it. It makes my life easier they say. What do you think? My dad & mom change it out every few days as needed. One time a sales rep offered my mom a new "Colostomy type of bag which was more fabric and breathable rather than the plastic one that I have been used to using. My mom didn't tell my dad about it, and my dad was holding me against his chest and lo and behold my bag blew up like a grenade. Holy cow, my dad ended up having to give me a bath, my clothes were all messy, and my dad and sister got covered in , well you know what. Ugh! Phew! We were all stinky pots. Ha , Ha, that was one experience I don't think any of us want to repeat, that's for sure.

Sometimes it feels like maybe I'm becoming part cyborg, as I have this feeding tube attached to a hole in my stomach now. That's where my mom and dad give me my special formula. I 'm on what they call a "kangaroo" pump that feeds me around the clock for the most part. Gosh what I wouldn't give to have decent bite of regular food through my mouth like french fries like my brother and sister eat sometimes. Its so frustrating to watch everybody else eat and not be able to join in regular dinner time with the family.

The nurses and doctors really treat me nice, and do their best to take care of me as I sure can be a little tough sometimes. They tell me it is hard to find my veins when they try to give me intraveinous medicine or fluids. So sometimes they have to give me a pic line or central line in my neck or some of the strangest places you can imagine. I usually have the most experienced nurse try to poke me with those needles. I get special treatment, as it takes a good 3 to 5 times before they get the needle inserted correctly, ouch. I actually know what it feels like to be a human pin cushion. but you know what? I don't cry much if at all. I just kind of make a frown face at my doctors and nurses.

You see I'm a little master, and I have compassion for all of my doctors and nurses, that are doing the very best that they can to take care of me and make sure that I am able to get better so I can go back home with my mom and dad and brother and sister. I really do miss everybody ! Sigh!

When I was in the womb I used to visit my dad at work, in my spirit body and laugh with him for awhile. I may be tiny but I know how to get around. I have to do something to entertain myself right?

I'm 10 months and I have already had 2 heart surgeries. My 1st one was what they call a "pda". That is where they put a band around the artery on the heart leading to the lungs so that the lungs will not get too much blood flow and cause damage due to, too much pulmonary pressure in the vessels. Phew, that was alot for me to go through. I had the surgery and woke up about 4 hours later and they had me in my cyborb mode with tubes running everywhere, and being a human pincushion has its advantages. I came out of that and was doing better for quite awhile. That was up at St. Josephs hospital in Phoenix, Arizona. They have nice doctors and nurses up there.

I healed up pretty fast from that surgery thank goodness, I had my little prayer group that was praying for me. Thanks to pastor tony and his church of the morning star! They say that prayer can move mountains, and it sure has helped me out alot.

To be continued:.....Please include me in your prayers as I really need them!

Thanks Kalani ,

Bless you and thanks for dropping by.

visit my Dad at http://www.google-ambush.net