Thursday, June 24, 2010

Chloe Surgery Tomorrow, June 24th- Untethering the Spinal Cord

June 23, 2010- Eve of Untethering of Spinal Cord Surgery Little Warrior Princess. Miracle. Inspiration. Angel. Grandma's Chloe Bug. I write this update especially for you, Chloe. This evening your mommy and daddy dropped off Sierra and Kadin at my house and we had a few minutes to chat and play before you headed to Denver to prepare for your surgery tomorrow. Playing with you in the car made Grandma especially happy, because your smiles just did not stop. Having taught you how to high five in the first place, watching you pick up and continue the high FOOT five was very silly and remarkable! Your dexterity with your feet, the amusement they have brought you over time, has never escaped me. I adored the way you lifted that chubby little foot into the air to meet my hand. I enjoyed it even more to watch the sparkle in your eyes, the mischievious grin, knowing that you had impressed me with your quick wit! It was difficult to watch you leave, knowing that I will be watching and entertaining your brother and sister as you spend a few days in the hospital. This is the longest stay for you since you left Children's Hospital right before Thanksgiving last year, after spending a full seven months there! I want to remind you of the intense and utter joy we all felt as you were placed in the van and driven home! You have made so many friends, you have people praying and sending healing energy to you from all over the world! I know that I will blow your mind someday when you are older when I share this journal with you, the constant outpouring of love and support that you garner just by being the tough little cookie that you are. A better baby would be hard to find. You have endured and gracefully dealt with each and every painful procedure and obstacle placed in your way. I absolutely cannot say that I have ever come across anyone in my lifetime with such fortitude with a super positive attitude to match it! I love you so deeply, you make the world around us all a better place. You remind us all that life is tough, that some are different, but that everyone is a bright and shining light in God's eyes. None of us any better than another of us. Some of in particular...just seem to bring out the best in the rest of us. Thank you Chloe! I look so forward to giving you your first Grandma Grandma hug and cuddle in a day or two! You are my hero!

Wednesday, June 9, 2010

June 2010 Long Awaited Update!

June 8, 2010 Hachi. A movie about a dog and a man. A movie about LOYALTY. 'Not ever giving up on those you love.' You, oh faithful readers have been Chloe's loyal followers. I have had such an overwhelming last year, the past six weeks have changed the way I view life and those most important to me as I live it. Thank you for continuing your unwavering support and prayers, your continued sharing of Chloe's story while I have dealt with issues that did not allow the time or brainpower to update you on Chloe. Watching the movie 'Hachi' tonight compelled me to get this written, so please watch it if you have time. It is a wonderful story and I want everyone who has helped my life to run a bit more smoothly and those who have aided so lovingly in helping my mom to recover, to know that you can count on MY loyalty to days end! Thank you! As happens, two months in any baby's life means lots and lots of changes and our Warrior Princess is no different than others. As you have seen by pictures I have been able to share, she is growing like a weed and making developmental milestones just as we all would hope! Chloe has been on the verge of crawling for some time and in the past week has figured out how to move forward, backward and sideways! Crawling to something she wants is now in her repertoire of accomplishments and life is changing in the Cooper household! It has been relatively easy to handle Chloe and the ventilator as long as she was not entirely mobile, but that just is not the case anymore. Figuring out how to keep her in one place, yet able to move around as she learns to navigate the world is keeping mommy and daddy busy. The ventilator tubing only reaches so far, so if Chloe is on the move, you are too! A new crib has been ordered to place in the living room where she mainly resides, because it is just no longer safe to keep her rooted on the couch! This girl wants to she shall! Normally, a baby could be placed in a playpen at this stage for a bit of containment, but the condensation in the ventilator tube at that particular grade wouldn't work. So, we have ordered a crib with lots of nice storage and Jen will be able to condense some things and not take up her whole living space! We are all very excited about these changes, as it means progression for Chloe! Another MOST exciting development is that Chloe has truly discovered her vocal cords! Remember early on when we were told that we might never hear sound from her? Even in the early days, at times each one of us separately would hear this little sound, but were always told that it must be a small leak in the ventilator tubing. None of us really bought it, but what did WE know? Well, Chloe has blown that silly theory right out the window. She has found a way to make a very sweet and delightful sound, I call a dolphin noise for lack of a better description. She uses different tones and especially when she is very excited, can 'talk' for quite long periods of time! It is one of the most astounding experiences to engage with her in and I hope to get a video of it here soon. Audiology testing has been done now and they say she hears more of the very high pitched sounds, therefore is trying to copy what she is hearing, just like 'normal' babies! If there is one thing becoming more clear it is that even though Chloe has challenges ahead that most of us could not fathom ourselves...she IS DETERMINED to remain as 'normal' as possible in everything she does! She may have physical abnormalities, but this baby is right on mentally! Today Jennie reported that her jealousy phase has kicked in. Holding and cuddling of her siblings by mommy has recently become quite a no-no in Chloe's view and real tears appear and very mad faces when she sees Sierra or Kadin being loved up! The lesson has begun that mommy's have to be shared! So adorable! On the whole, life has been moving along pretty well. Every now and then, Chloe reminds us that each day is a gift and that none are to be taken for granted. She did make it perfectly well through the general anesthesia and removal of the nodule from the trach site. By recovery time she was ready to sit up and get the heck out of Children's Hospital! No complications came from that and she also recovered nicely from the pneumonia that preceded the surgery. Just when you start to relax and feel that all is GREAT, Chloe throws a few things out that require stepping back for a moment and remembering that she has come extremely far and still has miles to go! Summertime seems to have brought a bit of an issue with heat. The first hot day we had, the AC was not working correctly for a while at their house. As the day warmed up, so did Chloe, and the hotter she felt, the higher her heart rate went. This was somewhat concerning as it has not been an issue for such a long time! The fan was found and as we cooled Choe down, the heart rate slowed to acceptable numbers. Lance came home as soon as possible, fixed the problem, got the house cooled down...the Little Princess had her climate controlled room once again and was just fine. I guess we will have to watch temperatures for a while. Our scariest experience was just last weekend. After the intensity of the past few months, I wanted to take my family to our extra special music venue in Morrison Colorado, for a night of FAMILY fun and relaxation. Jennie spent time getting Chloe covered for the evening, I did the same for my mom and off we went. Red Rocks is about 1 1/2 hours from Jen's house and the furthest she has ever been away from Chloe. About 90 minutes into the concert, Jen turned to me and said, "I just don't feel comfortable. I have to go home. I don't have any bars on my phone! Something isn't right." I looked at my phone, which was getting reception and we got barely far away from the music to call and to hear the nurse report that Chloe had had the trach come out, had stopped breathing, been unresponsive and had turned blue...but that it had been handled and she was okay! Talk about sending my daughter into a frenzy! She and Lance went flying down the mountain to get home to their little one with much anxiety fueling their fast descent! Chloe WAS fine, but something of this sort had not happened in quite some time and was really unexpected! We are grateful for the nurse that was with her and for the extra night nurse in training being on hand that night! Our God watches over this baby when mommy can't FOR SURE! I'm sure it took both nurses to handle the emergency and by the grace of God, two were in attendance! So, this was a reminder to me, and I am sure others, that we must stay vigilant in our praying and remain in gratitude for all answered prayers. Chloe is such a gift. She has brought so many strangers together and sharpened the faith of many. My beautiful daughter has stated to me that if given a do-over, she would pick Chloe over all others the second time around! That is love, that is motherhood...that is loyalty! Loyalty, my word for the day! It is my intention to get back in the groove here and keep you posted much more regularly. Chloe's next surgery is June 24th, I think. This will be the untethering of the spinal cord and a longer stay in the hospital. I will give you all necessary info and details as I know them! LOVE TO EACH ONE OF YOU! Nancy