About to Leave Colorado

Well we knew this day would come but this is still a sad day for our family. We loved Colorado almost the instant we pulled into the state. There are hills, mountains, lakes, and most of all trees everywhere. We have greatly enjoyed our 5 1/2 years here. I know it does not seem like we have been here that long but Chantelle (Ellie) was just appraoching 6 months of age when we arrived.

Our arrival to CO came with many unknows, the biggest was with our littlest Princess Ellie Rose as the hospitals in AZ called her. She was so tiny and so sick. Zach was getting much bigger and close to having his feeding tube pulled, he just needed the right peds dr to help him see he no longer needed it.

Chantelle has gone by several knick names as she has blossomed over the past 5 years. Princess, Princess Rose (the nurses loved a rosey cheeked baby) then when Nana called her Ellie they would call her Princess Ellie Rose. Later she would be called Ellie-Bug as she learned to scoot even with her tubes and wires.

We learned to sleep and adventure into the world with her oxygen, monitors, pumps, everything needed to help her sustain life at her most critical points while home. We developed as much a balance as possible those crazy times she bounced between home and hospital. We developed relationships with home health nurses.

Then our world was torn apart here in CO when I (mom) suffered mini strokes and lost my ability to write, my speech, walking, balance, basically everything was effected. Not severely, yet enough to make life challenging for all. As we slowly put our lives back together Chantelle continued to suprise the dr's and grow, and not only grow but seem to be slightly healthier each month.

Before we knew it she was turning 2. This was a birthday that was not supposed to happen. Unfortunately we had to cancel that huge party because she was so very sick and back in the hospital. But she was 2! The drs at National Jewish and her drs at Children's were stunned but thrilled. Then after a few more bumps, proceedures and surgeries, before we knew it we were meeting with her National Jewish team (for the last time) just before her 4th birthday. At this appointment they were stunned not only with the fact that she was indeed 4 but how vibrant and healthy our litlest Princess was looking.

This appointment was different than the rest. Instead of telling us not to plan her next party because children like her do not life (x amount of years) they simply told us "We do not know what we are doing (her whole team of National Jewish AND Children's dr's) or what you are doing, but what ever it is keep it up because whatever it is, it is working. We do not know how much time you have with your child so treat everyday as blessing. Count every day as another blessing. Enjoy each and every day you are given with her, because she has far out lived all her expectations to this date." After her full exam they let us know she was still very small for her age, but considering her list of medical issues one of the healthiest and most active they had seen especially for kids still on oxygen. We were sent away with their blessings knowing that she was in great hands with her family and current dr's.

We have since then done our best tried to make each simple park trip an adventure for the kids. Taught them how to use their imiginations to turn the things around them into whatever they want it to be. The simple rock climbing wall becomes the mountain to climb and conqure.

Then Nov 24, 2008 our world was rocked once again. Our oldest son was diagnosed with a very rare platelet disorder. At diagnosis his platelet count had dropped down to 1. His peds clinic while they treat only special needs kids had never seen a platelet count of 1 and were freaking out. (LOL later talks with Glenda I asked how she thought I felt, if she as freaking with a child with no platelets, she only laughed, then told me I was lucky enough still to no know the full scope yet.)

The normal platelet count is 400,000-500,000 but dr's do not worry unless under 150,000-200,000 because that is where is low platelets are dangerous. Our son was sitting at 1000. The machines only read in 1000's per unit of blood. After 8 hours in the clinic that day we were sent home told to be extremely careful on Thanksgiving and return on Monday for another blood draw. But ensured within 6 weeks his counts would be normal. The following Monday he was still at 1. The drs were concerned.

3 weeks later, still at 1, so he started prenisone and we returned 2 weeks later, finally a minute rise and off to the hemo we went. We were reassured nearlly ALL kids self recover with time and prednisone. She told us within 6 months he would be back to normal just like nearly all the other kids she had seen.

9 months later we were still doing IVIg and getting little responce. 2 yrs later we tried a chemo med that puts 80%+ patiends children and adults into remission so we did 8 doses not the normal 6 doses. No respose. By this point he was clearly chronic refractive idiopathic thrombocytopenic purpura (ITP).

In other words or should I say easier to understand terms (chronic) long lasting (refractive) not responding properly or at all to meds (idiopathic) a word a LOATHE and (yes worse than hate), means we do not the cause or where it comes from, unknown cause, (thrombocytopenic or thrombopenia) means to cause a drop in platelets, (Purpura (from Latin: purpura, meaning "purple") is the appearance of red or purple discolorations on the skin that do not blanch on applying pressure.

We are now nearly 3 years into this adventure of our lives.

Arizona adventures introduced autism and wonderful people to help us and our 12 yr old daughter with her unique outlook on life. Chantelle with her breathing, eating, and collection issues. We left AZ with 1 child with a feeding tube soon had 2 kids with feeding tubes in CO.

We now leave CO with only one child with a feeding tube but only her feeding tube, ITP, and return to AZ for 2 months of adventures, then head off to see what adventures await us in MD.