Our Littlest Blessing

Dec. 29th, 2010

Wikipedia-Blessing

A blessing, (also used to refer to bestowing of such) is the infusion of something with holiness, divine will, or one's hope or approval.

Or...Chloe, Warrior Princess! As we celebrated this season of miracles and blessings, the fun filled activities that that delight children of all ages to no end, prayed for peace and gave thanks for all things good in our lives, the word blessing kept surfacing for me. At every turn, Chloe seemed to do something new or surprising, and the meaning of this word took on even more importance in regard to her life.

Just over 20 months ago, this little baby was born who had so many serious issues in so many areas of her tiny little body, her days seemed surely numbered. The blessings began in the form of highly specialized doctors, amazingly intelligent, caring nurses, compassionate social workers and the charitable Ronald McDonald House just down the street staffed with kind and intuitive volunteers. That was only the beginning, because as soon as I wrote my first entry here, a multitude of complete strangers added their names and their prayers to our never ending requests for both of them! Some of you sent much needed money, some of you sent presents, Chloe was remembered at Christmas and every one of you became our angels. Our blessings.

God is good. Every day that He has given us with Chloe is a blessing. Chloe IS the blessing. This month, Chloe walked. When I first shared the video, she was just 'practicing', but now she is off and running and doing her thing! How many of us wondered at some point if this would be part of her life? Amazingly, right after untethering that spinal cord, she crawled... and now she is walking. Christmastime brings special blessings, doesn't it? Another is that today she actually went potty in the potty chair! Girls just rock! She is growing up. Santa brought her a kitchen and she is a very busy little cook. She can push her little shopping cart at the 'grocery store' and has a very good teacher in her mommy. "Store" was always Jennie's favorite game as a child! Her favorite character is Dora, just like so many other little ones. She plays with her siblings, gives 'fairy kisses' (fingertip to fingertip) and signs many of the things she wants or needs. She can sign three word sentences now, which her therapist says is VERY good! A few days ago she went into the room where her diapers are kept, got one, took it to Mommy, and started to take hers off! How's that for a blessing? Jennie certainly thought so.

So, we count our blessings ALL the time. The ventilator is just used at night now, unless Chloe is tired or sickly. There have been some colds and flu in the house which she has not escaped, but nothing has turned serious! It is that WILL of HERS that lets us all sleep easier at night. We count our blessing each day because these are wondrous and fun days in every child's life. They just seem more special when you know the story of the Warrior Princess.

Happy New Year to all. This has been such a beautiful year in the life of Miss Chloe. We feel privileged to have counted you in our list...of blessings. New procedures and changes are upcoming in the new year. We will keep you posted. Until then, here's to all the best yet to come in 2011!

Long Awaited Update! Chloe Grows and Grows!

Nov. 14th, 2010

"Bloom where you are planted." Tiny, tiny stitches spell this out for me in a framed piece of embroidery given to me by my mother when I left for college so many years ago. It has traveled with me to many a home, been put upon many a wall! Unpacking after this latest move, upon finding it, it struck me that this was now Chloe' motto. No one, absolutely no one expected the seriousness of Chloe's medical issues on the day that she arrived at Children's Hospital in Denver. Each day for months brought obstacle after obstacle, question after question, stress after stress. The adults who made up her world prayed, cried, sighed, paced, lost sleep, prayed some more and asked others to do the same. Chloe? Chloe just laid back and continuously figured out how to outfox the the most dire predictions, how to make bad mean good- refusing all negative possible outcomes and affirming only the positive paths. In other words, she 'bloomed where she was planted". We watched in awe as she moved through the pain, the fear, the medical impossibilities and we rejoiced with you!

At seven months old, one month before Thanksgiving, Chloe was allowed to go home. The excitement built for weeks, there was also some anxiety, it was a big job to take on the care at home. Many modalities were put into place to help but Chloe's parents, Jennie and Lance...they knew that the responsibilities were theirs. Funny thing though, after sitting at her bedside for so many months, no one knew this baby better than her mommy and daddy. So many times they both were telling doctors what ended up being the best course to follow. The family just wanted to take their baby HOME! So, who embraces the home life more that any other? Well Chloe, of course. Chloe decides that after FINALLY being given the opportunity to show what she could do outside the confines of the hospital that she just wouldn't waste a minute! So many truly miraculous things have happened to this little Warrior Princess since her big break out! If you have followed this story for any length of time, you know some truly miraculous moments that I shared as they were happening! Trials for increased time off of the life supporting ventilator, first attempt at rolling and crawling, playing, making of sounds, all the special ways that Chloe has shown love to each of us. Jennie and Lance have included her in each activity that 'normal' babies would be trying out as they got a bit older, her first strolls in the stroller, playing on the lawn, going to the park, Christmas, snow, Halloween...all have been experienced and enjoyed by our little angel and encouraged by her very courageous parents. Every moment has not been delightful of course, as Chloe experienced a serious spinal surgery in the early summer and had a couple of very serious issues with breathing that undid us this summer in an extremely emotional manner as we realized how fragile she still can be!

I have been somewhat remiss the past two months in reporting all of the goodies, as I have moved and put energies elsewhere, I realize there are MANY momentous moments to share at this point. As Chloe grows, language is such an important and imperative issue to be dealt with, and her hearing loss plays a large part in this development. It has been determined that even though her 'cosmetic' ears are lacking, the actual inner and middle ear did develop more that expected. Chloe's hearing loss is not as severe as it could be, and the hearing aids are allowing her to hear more than we had hoped! Delightfully, we watch as Chloe picks up and understands the signs that are being taught and is actually making up some of her own now! They are the cutest thing you have ever seen! She is SO bright and is quite the little thinker! Jennie posted a picture a while back of Chloe placing her head directly on Lance's guitar in order to better hear it. She is figuring out a new method all by herself! Having four and six year old siblings who each adore and spoil her doesn't hurt! She has a lot of keeping up to do! This little Warrior would amaze you at every turn, just as she continues to do with all who love her here! The very BEST news that I have to report is that Chloe has totally disregarded doctors predictions and has very quickly discarded the need for the ventilator to breathe for her a MAJORITY of her time in the day. She is put on it when napping and does still remain attached to the machine at night when sleeping, but her lungs have matured and she is most often breathing on her own! When Chloe started making moves toward crawling, it was obvious just how difficult that could get. The tubing from the machine is not very long, and just motivating a short way in the living room had to be monitored very closely! NOW, without being attached, she is able to crawl around the house untethered, just like any other curious baby! She is attempting to walk, and is very proud to show just how long she can independently stand! She loves playing with her 'baby', stands for long periods of time at the Lego table crafting her innovations, pulls our hair, grabs our glasses, cruises in her walker, laughs, enjoys the mischief that is intrinsically a part of being not quite 2 years old! Such a delightful baby, hugs are warm and inviting and kisses are given by touching foreheads. ( Chloe's own invention!)

So, I cannot think of another place where "Bloom Where You Are Planted" is more appropriate. God placed Chloe in the care of loving, educated parents. They are doing their part to give her every opportunity to move forward. Chloe has taken on the challenge of doing the blooming...wherever she may be. In this scenario, she is the entire flower garden and her beauty is a prize winning blue ribbon every day of the week!

Thanks to everyone for being here on a daily basis, for sending love and encouragement through many different forms at any given time! Now, I charge you with helping me to raise the member number in this group! You will be blessed just by dropping by from time to time! God's love and blessings to all!

Chloe Has A Close Call and The Day After

August 18, 2010 The Day After

I am so thankful for each member of this group and for family and friends who support us every single day with love, prayer and encouragement! I don't know about Jennie and Lance, but I could not have kept my sanity throughout the past 16 months if not for all of you and of course, God. Chloe, my mom, my marriage, other family issues-all have tested me, all at once it seems. More than once, I did not have the strength, or so I thought, to pray another a prayer or think another thought. When in that place, I knew beyond a shadow of a doubt that someone was praying for Chloe, for my family, for me. I knew that I did not, could not carry it all on my ever broadened but sagging shoulders. Today, I was again reminded that when the chips are down, you are there, keeping the vigil. Our little Warrior does not go unwatched, her mom and dad are strengthened each and every day with help of God. When our guard comes down a little it does not mean that we are not being remembered. Chloe's situation last night reminded us all just how special it is to live each, single day. Not one of us can be sure that we have another past this one. We MUST feel grateful and take delight in even the smallest moments each day.

Chloe is growing older, 16 months, and is just a bit naughty now...just as we would want her to be! But-Chloe has things that are very interesting to play with on parts of her body where most of us don't. She often is pulling the feeding tube out of her tummy, has just recently been very entertained by taking the trach tubing apart and even sticking her tiny finger into it! The actual removal of the trach from her airway, by her, is extremely frightening and until she is old enough to have the surgery to begin building her jaw, (about 6 yrs.) the possibilities for self harm exist. This was not a misdeed by parents last night, this was a baby in crib, settling in for the night, who literally pulled her airway out of her throat! I say these things because I do not want any one of us to become apathetic or lazy and think that Chloe and her family don't need you anymore. We need you, we need your prayers, we need you to continue to invite friends and help spread the word about this inspirational little miracle.

Today I visited my little angel bug and she seemed rarin' to go and very engaged. We played lots of horsey, I read her a book, practiced walking, played patty cake...all the things I do in a regular visit. It was different though, believe you me. As Jennie stated herself, "We might have been planning our daughter's funeral today." Nothing is the same. The siblings have experienced a near death experience and although it has been talked about and processed, that night will remain close for a long time to come! We all felt a little closer, a bit more connected. After coming home and reading all the well wishes on this Wall, I feel the same way about this group. Please stay forever. We need you, each and every one! Love and blessings! Nancy

Aug. 17, 2010 Chloe Has A Close Call

Thanks be to God for every prayer, every day. Tonight it became very apparent just how much we cannot let our guard down where Chloe and her family are concerned.

Tonight, as Jennie read a goodnight story to Kadin and Sierra and Lance was taking a bit of a breather right outside the front door on a absolutely beautiful Colorado night...Chloe was busy pulling out her trach. The ventilator alarms rang out, as they always when do when the tubing falls off, or lately, when Chloe pulls it off herself. Usually, it is not very concerning- it just needs to be placed back on and a button gets pushed turning off the alarm. Tonight, Lance checked when he heard the beeps, but Chloe was in trouble. She had pulled the entire trach tubing out of the airway, and Lance was unable to get it replaced. As he yelled for Jennie, she did not hear him, and they now understand how little is heard from the kids room to the living room where Chloe resides. She had noted the alarm, but knowing Lance was close by, gave it a bit more time before realizing Lance was yelling for her. As soon as Jen got into the room, the urgency of the situation was quite apparent. For whatever reason, the trach tube was not going back in... after three attempts, Chloe still had no airway. With Jen in the room, Lance was able to get 911 called and on the way. At this point, as Jen got to Chloe to try her hand at putting in the trach, she felt that Chloe was gone. She says she must have said to Lance that she thought that she was dead, just as Sierra and Kadin ran into the room to see what was happening. Working through the panic of a blue, limp baby taking no breaths, she did get the trach in and immediately began CPR, giving life giving breaths directly into the trach opening. Praising GOD as I write, Chloe took a breath! Soon enough, she was breathing, but her eyes remained glazed for a moment and Jennie was of the belief that she would be brain dead. Rewriting this story so soon after hearing it has brought tears to my eyes once again. Little Chloe, so fragile, so beautiful, such a wondrous little one who has graced our lives in so many ways! As Jennie held her, speaking her name over and over, she asked Chloe to just let her know that she was okay. You know what happened? Chloe looked right at her amazing mommy and signed, "Yes". This baby, who was not breathing a few minutes before, SIGNED to her ever so distraught mother that she was okay! Soon after, Jennie asked her to just do her little dance, which is really just a bobbing of the head, and she did that too!

As she stablized, the fire truck arrived...finally, and Jennie walked outside, sat...and cried and cried. Neighbors gathered who had come to grab the kids and to make sure that the outcome of sirens to the Cooper household was a positive one. Thank God that the story told tonight has a happy ending. We know that many of you keep this family in your prayers on a daily basis, we are grateful every day knowing that Chloe has inspired you enough to be remembered in your busy and hectic lives. She had made such tremendous strides the past six months, weaning from the ventilator, crawling, taking her first step, learning so many signs, remaining so very happy through every possible obstacle! We cannot forget, though, that Chloe is still on life support and that each day is a gift. A gift for each of us. Jennie and Lance feel that your prayers and the watchful eyes of angels everywhere give them their strength to do the very special job they have been given to do. Tonight I give thanks to God for giving me the most amazing daughter and son-in-law, who don't fall apart in crisis, who observe, and learn and DO WHATEVER NEEDS TO BE DONE to keep my grandbabies safe. I give thanks for 4,190 special people who are involved in our lives because of one unique and miraculous baby! Thank you God, for allowing me the opportunity to wake up one more day with all loved ones still here with me.

Chloe's One Year Anniversary of Open Heart Surgery

Deuteronomy 10:21
He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes.

One year ago today we watched, you waited for news, as little Chloe, only 13 weeks old was wheeled away into surgery to mend her broken little heart. If you remember, the months that had passed were grueling, as doctors could not decide exactly what action to take to help Chloe breathe. The ventilator, her life support, was hard at work, but her heart rate would soar to nearly 200 on a constant basis and she struggled every day to remain here with us. Pulmonologists waited for heart specialists to make moves, heart specialists waited on pulmonary! Each time I wrote this update asking for prayers, we were in dire need of encouragement and prayed that God would find mercy and give Chloe's medical team the answers to the puzzling little baby in the neonatal intensive care at Children's Hospital in Denver. Chloe's life was jeopardized so much of the time. Parents, grandparents, siblings, aunts, uncles and friends-all were frazzled as days upon days stacked up, new problems arose and were dealt with one by one as we sat in shifts every day and every long night...never wanting to leave Chloe alone. God blessed us with nurses who fell in love with her and prayed along side of us, doctors who never gave up fighting for her, and thousands of people from all over the world came here to pray for her and for us.

The day the decision was made to fix her heart was a banner day, believe me! Something HAD to be done and Chloe was in need of a miracle. Knowing that it had to be done did not make it any easier to give kisses and well wishes as she disappeared into the closed walls in the surgery wing that early July morning. Not one of us acknowledged our fears, we only spoke of the miracle baby who fought like no other, who surprised doctors at each and every turn by doing exactly the opposite of whatever they expected of her. Chloe amazed us EVERY day and this day we prayed that the heart surgeon had been blessed and given special instructions to do his best with this very special child of God. So many unknowns plagued doctors all along, as so many of Chloe's organs were underdeveloped. So many things could have gone wrong. But they DID NOT! God was well represented that day in the operating room and each day following. Angels disguised as doctors and nurses repaired two holes in her open heart surgery and after hours of waiting and wondering, we we allowed to see our beloved Chloe.

Imagine! Three months old and open heart surgery! My mother had the procedure done at 78 and it was almost tortuous to watch the healing afterward with her! Chloe was medicated heavily when we were called to check in, the sight was not a pretty one, but Chloe lying there... breathing... heart rate STABLE, was a VERY beautiful thing! She had not one single complication and ahead of schedule was given less and less pain medication and released back to the NICU much earlier than planned! The surgery was a GIGANTIC success and from that day forward, Chloe was a new baby! We all watched that monitor that we had feared with awe, as numbers remained in the normal range hour after hour, day after day! Chloe had been given a new lease on life and I KNOW we ALL, you and each one of us, breathed a COLLECTIVE sigh of relief! So, today is the one year anniversary of the Warrior Princess getting a new lease on life! We all know that many problems arose afterward, that weeks turned into months and it was still six months before she was released to the love filled home where she now resides. But THAT day, those weeks following that surgery, gave us all a renewed sense of God's goodness and his promise that we all have purpose. Chloe is like no child I have ever seen. She has brought to date, 4,190 of us to share, encourage and love one another through faith and thanksgiving and I feel certain that with continued prayer and growing numbers, God hears the multitude of prayers and smiles down on us each every day. This child, this Warrior, has just begun whatever she has been sent here to do. Just look what she has done in 18 months! Given 18 years...WOW! If you scan through my pictures here, you can revisit that surgery day with us. My scripture for the day is very fitting! We are praising the Lord for Chloe and all things she has brought to us! Thank you God!

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 us...you 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!

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 move...so 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

My Birthday Party Movie at OneTrueMedia.com

Chloe had such a wonderful 1st birthday !

Make an on-line slide show at www.OneTrueMedia.com

It's My First Birthday!

Here are some photos of Chloe taken pretty recently. Sure hope this is a successful link!

http://www.onetruemedia.com/otm_site/view_shared?p=ac59f8e055dd86f73777ce&skin_id=0&utm_source=PostFacebook&utm_medium=Share&utm_content=PostFacebook&utm_campaign=PostFacebook&origin=facebook

It's My Birthday! at OneTrueMedia.com

Come and see me and witness what a miraculous first year of life I have experienced. Chloe, sweet love! HAPPY 1st BIRTHDAY!

Make an on-line slide show at www.OneTrueMedia.com

Big News In Chloe Land!

April 14, 2010 Unbelievable you might say, but I think I might have writer's block! Seriously, I have tried to begin this for the last ten minutes, written and erased twice and finally just decided to give up! Then I decided that I could at least give a quick little update to let you know of recent progress and get you prepared for next week. First, Chloe has had a remarkable month in all areas. She is happier and happier every day and spends much of her day playing like all babies! She loves books, babies, toys with flashy lights and music and loves to play with anyone who catches her eye! It is NOT hard for Chloe to get attention when she wants it, believe me! She laughs so much more frequently and has become much more interested in what her siblings are doing and trying to join them in whatever capacity she can. Two very important pieces of news in the past couple of weeks have to do with physical issues. Most of you know that because of the lack of jawbone, Chloe's tongue falls back in her throat. This causes two very different problems. One, of course, is the difficulty in breathing and the other is her inability to swallow normally. Her breathing difficulty is addressed with the ventilator and the swallowing issue with a feeding tube for her nourishment. Up until now, she has only been fed formula, so it was a pretty big deal for the nutritionist to give the go ahead for solid food in the past week! Jen was given recipes to make at home, and all of the food is blended to a liquid consistency, but Chloe is eating REAL FOOD! Yippee! She started on a couple of veggies and some meat and is doing very well! This is very exciting news and will lend itself to much more normal development. Secondly, Chloe was seen by the vision specialist and it has been determined that her vision is normal! Hallelujah! It has been a bit difficult to know because of the little cleft on one of the lids and Chloe sometimes seems to be straining to see things-looking at something very close up or staring for long periods of time. She loves to look at hands! Now that I am thinking about it, when looking at things at a distance, she seems quite focused and doesn't seem to have problems at all. Anyway, getting the news from the doc was great, they will fix the cleft in the eyelid in a somewhat difficult surgery, but we know she is seeing and that is just one more blessing to add to the list of so many! Maybe the biggest news of all...next Tuesday, Chloe, Warrior Princess, will celebrate her first birthday! Those of you here since the beginning know the enormity of this milestone! Chloe experienced so many, many health problems and many times it truly was not known how long we would be blessed with her presence. Many of her nurses read this blog and we will forever feel huge amounts of gratitude to you for the loving care given to her month after month at Children's Hospital. For much of seven months there, no one seemed to know from day to day what to do or how to handle Chloe. Her nurses just continued to give good care no matter the circumstances and gave so much to the family as a whole! So, here we are, almost a year later! To all of you in this group, THANK YOU! Many times when we were so stressed and tired it was YOU who carried us through the most difficult of times. Our group continues to grow and God hears each and every prayer! We sing His praises each and every day! Chloe's birthday is on Tuesday and on Thursday, the 22nd, she will once again visit Children's Hospital for another surgery. She has what is termed a tethered spinal cord and it needs to be 'untethered'. The way I understand this is that her spinal cord is a bit longer that normal, and at the bottom of the spine, it is attached where it should not be attached. We are told that this is not that uncommon, although I have never heard of it before. An incision about an inch long will be made in the lower back and the area holding down the cord will basically be snipped, allowing the spinal cord to float unattached. It is expected that Chloe will just need to be in the hospital for three days. Jennie will stay at the hospital, Lance will be staying back at the Ronald McDonald house when not at the hospital. Having had Miss Chloe home for about five months now, none of us could imagine leaving her alone AT ALL in the hospital, so we will all be doing our duty to cover kids and support parents-getting the job done and getting that baby home once again! We will be counting on all of you, as usual, to keep our precious princess in your prayers. I will certainly let everyone know the day of the surgery how GREAT the outcome is! So, no writer's block after all! I really have been waiting to write when I could post pics too, bit am still having difficulty. I am glad that I could get this out tonight! Love and laughter to all, Nancy

March Has Been a Good Month!

Mar. 24, 2010 What a wonderful group! March has been a super great month for getting new members to the group and I want to thank everyone who has helped us to grow! My New Year's Resolution was a very simple one-Choose Love, and with so many absolutely faithful and encouraging supporters, I have found it pretty easy to stay in that place. March has found me to be IN GRATITUDE! I feel that Chloe, myself and the rest of the family have benefitted each and every day since the inception of this group, how can I NOT be in a positive place? God really is so good, all the time. Each day, you are ALL remembered in MY prayers! Our Little Miss Warrior Princess is just blossoming more each and every day. The pink and purple crocus just down the street have nothing on her! This has been a tough, cold, snowy winter and having such a compromised respiratory system has made it necessary to keep Chloe inside most of the time. She hasn't been a winter wallflower completely though! We have had some sunny, warm days, especially the past few weeks as we move into spring, and Jennie and Lance take every opportunity possible to get her outside. In the past two weeks, she has spent many hours on a blankie outside, discovering some pretty remarkable things in just her front and back yard! Having a battery pack for the ventilator makes it possible for Jennie to move her about throughout the day. It is a bit of an ordeal, but nothing that my remarkable daughter doesn't just see as a new normal. We were also able to have her take part in the festivities of her first official fundraiser. Many new and local people got to hear about Chloe and Chloe got to experience the most beautiful music! Watching her tilt her little head to the 'just right' position to hear the music when it began was so very, very memorable. It will be one of the visuals I will take with me for the rest of my life! Getting her out to the event was a pretty big deal but well worth every minute of preparation to make the trip to Boulder. Another night, Sierra had a fundraiser for her school at the Chick Filet in town-of course the family all had to be in attendance! One weekend, her Uncle Brandon was selling his chocolate fudge at a Buy Local market in town. The whole family made it down to 'help' and after 'helping' for a few minutes, Chloe decided selling was tough stuff and fell promptly to sleep! These days, Chloe actually has an opportunity to 'just be one of the family'. So many months of having that NOT happen because of the lengthy hospital stay makes these times out super special. The kinds of things we many times take for granted have become very apparent to us since Chloe's birth. We have felt incredibly blessed that Chloe has built a really great immune system and has not gotten sick this winter! With all the doom and gloom predictions of record flu season looming, there certainly has been concern whenever a sniffle germ rushed through the door and somehow escaped the massive amount of sanitizer in the house! But...only one cold bug grabbed hold of The Warrior Princess and she handled it very well. Thank God for big favors, because a respiratory infection, or any situation involving her lungs could have very negative consequences. This baby started out tough and prefers to remain that way! I am certain that the amount of continuous prayer from all of our friends and family has kept her well! As she grows, her development continues to be on track in most areas, especially considering that she has had to compensate for such a small amount of stimulation because of the serious medical issues and long, long time in the hospital early on. Now, even without ears, with the one bone conducting aid she seems to hear sounds and responds to noises, music and voices. She is learning more and more signs and loves to play with her toys and most of all...her Grandma! HA! Maybe not JUST her Grandma...she just loves to engage with everyone and loves getting attention. She pulls hair, grabs glasses, pulls hands away that are wiping her nose or trying to get her suctioned and let's everyone know in no uncertain terms when she is either angry or happy! Chloe has a beautiful smile and loves, loves, loves to be tickled! Her physical therapy continues to go well, and she is able to stand holding on to the couch or with some other form of support. She weight bears much better on her legs and is getting closer and closer to making the giant crawling leap! She is just a delight and if I could figure out how to get them loaded on the new Facebook, I have some GREAT pictures. Just wait until you see her, so adorable you will just want a Chloe of your own! Hopefully, I will get some help and get pics up soon! One more month, and we will have made it to the one year old mark! Wow, what a year! This family has been tested on most every front and we still march forward, hand in hand. Thank you again for supporting us in doing just that! Until next time ,love, blessings and peace to everyone.

Chloe Grows and Needs Your Help

Chloe continues to delight and amaze us with her growth and capacity to make us smile and love her more and more each day. The past month has basically been filled with joyous moments and although the news is not always what we hope it may be, we bring to it the knowledge that Chloe is doing this life her way, God’s way. She will never be boxed in by ‘won’t” or ‘can’t’ or ‘never’. This child is being protected and sheathed by God’s love and prayers and positive energies of so many people around the globe! ‘Go Chloe’ has been a sentiment expressed time and time again here, and ‘GO’ she does!

Onward we go to the developmental news of our little warrior. As of yesterday, Chloe is 10 months old! What a journey it has been so far! I find it unbelievable still that she has only spent a little over one quarter of her short little life outside of the hospital! The progress that we have experienced since leaving is quite remarkable! Chloe is continuing to learn more signs and can now sign her brother Kadin’s name. Having this happen has made him feel much more involved and he is taking the role of big brother much more seriously! Jennie reports that he finally asked to hold her and when told that he certainly could, replied, “No, I don’t really want to.” Encouraged by Jennie, suggesting he ‘might be just a bit nervous’ and that he ‘really DID want to try’, he took the challenge and with a bit of ‘help’, carried his sister down the hallway! Since that moment, and Chloe being able to ‘call’ his name as she has Sierra’s for quite some time now, he has found his helpful brotherly way. Chloe can sign so many words now, the newest being ‘change the diaper’. Jen says that she will sign it when she is wet! Smart girl, she knows how awful those rashes can be! These sorts of things remain so encouraging because it appears that Miss Chloe is just a wee bit smarter than the average little bear. Given the physical challenges that are yet to come, these bits of news are like popsicles on a hot summer day-VERY welcome! She is also able to stand alone for quite some time with support, and is quite determined to begin crawling. We have been cautioned that this is time when Chloe may look to lag behind other babies developmentally because of the long period spent in the hospital and the time catch up time involved. Chloe doesn’t think so! Hearing that has made her ever so much more determined to get herself moving! Helping her to coordinate hands and legs when crawling has been a part of her physical therapy for quite a while. Now, she is able to get into the crawl position and rock back and forth, determined as can be to MOVE, for 20 minutes at a time. Just holding herself up for a bit not so long ago made her quite angry. The grimace would come and she would lay her head on her arms in defeat! Not so anymore. This baby will not be held back! She may have a tougher, bumpier road to travel, but she does intend to travel it!

Last week Chloe had an important visit with both the Ear, Nose and Throat (ENT) and Pulmonary doctors back at Children’s Hospital. She has been doing quite well, with few drops in O2 levels and pretty routine days with the ventilator settings as they are. The docs were pleased, but Jennie and Lance asked for just a small adjustment in the vent settings in order to begin preparing for ventilator trials at some point in the summer. The doctors agreed to lowering the pressure amount just a bit, which in itself doesn’t sound like much, but in the bigger picture could make a difference. Chloe is doing just fine with the new settings. Summer will not be too soon to begin trials for less and less time on the ventilator. As you know, previous ones were not so successful, but Chloe is doing well and hopefully her lungs are growing along with the rest of her and eventually the ventilator will be a thing of the past! How wonderful and easy it would be to have a baby with just a trach! I remember oh so well how scary and daunting that, in itself, sounded in the beginning. Oh, how relative things are!

The ENT news was not quite as good, but this is where we put Chloe into the category of ‘I’ll do my own thing, thank you”! The doctor was quite surprised that she had not had her throat and nose scoped up to this point, so got right on that. He determined that there were no issues with the nose or throat, but feels that Chloe’s vocal cords look pretty abnormal. He stated that there was the possibility that after the vent and trach are gone, Chloe may still never speak. I don’t think any of us had really considered this up until this point and speaking for only myself, it felt a little like a kick in the gut to here it. It has been hard up to this point never having heard her cry, but I guess we have all just assumed that for now we teach sign language, and later we’d be doing speech therapy. Who knows? It was just a bit of a heart breaker for me, and Jennie and Lance remain positive that Chloe has outwitted the docs every step of the way so far, why not on this issue also? I’m a positive thinker also, and will remain so, I just need to work through this a bit. He also talked of the ‘nightmare’ he sees ahead with orthodontics because of the jaw issues, but on the other hand was quite surprised when he looked in her mouth and saw how well the bottom teeth are emerging so far. We might get a break there also! God is at the helm of this ship and has stayed the course through some mighty severe weather. Why on earth would he stop now?

Feb. 21, 2010

So, as lengthy as this is, I’d better wrap it up. I do have my first real appeal for a concrete need for money donations. Many of you noticed the hearing aid that Chloe had fairly early on that was attached to a bow on her head. That hearing aid was not a good quality one, but was what insurance would pay for. It was bulky, filled with static, and dug into Chloe’s head. Expense-wise, it was what we could have. There is a much better hearing aid, called the Baja, that Chloe has now had gifted to her for one side, by a parent of a child in Ft. Collins. It is so much more remarkable, Chloe loves it and it is held in place on TOP of the headband, therefore allowing her to wear it more because it doesn’t physically hurt her. After hearing the news this week about speech, it is IMPERATIVE that we get the Baja for the other side of her head ASAP. The difficulty, of course, as was before, is the cost. The out of pocket expense for this aid is $5,000 and without donations, Chloe will not have it. It is as simple, and as sad, as that. I ask that you check those couch cushions, give up that one Starbucks, ask your neighbors, your churches, your friends…to help Chloe in this ever so important quest for donations. Maybe you know of an organization that we don’t know yet, or have a connection you can help us through. This is the first time I have asked for something so defined, and hope you can find it in your hearts to help just a bit. Those little amounts of money that you don’t think will make a difference…when put with all the other little ones…MAKE A DIFFERENCE! Please see above for the banking information where YOU can go to make a difference. Thank you ahead of time for ANYTHING that you can manage. Thank you also for continued prayers, encouragement and love. This journey just would not be the same without all of you! Keep inviting friends! Love and blessings to all, Nancy

Photo Montage of Chloe and Family

Please watch the video below! We have come a long way on this journey so far! Looking back makes me ever more hopeful about moving forward!

http://www.onetruemedia.com/otm_site/view_shared?p=a575850cd631aeca76bbcf&skin_id=701

Chloe's Progress and Upcoming Surgeries

January 31, 2010 It is a bit late for an update, but I hoped to complete something before the new week started. This may run a bit short, but thanks for being here! After working so hard to raise member numbers for a while and losing them instead, i just gave it to God, took my loyal friends advice and chilled for a while. Since doing that, new people have joined and invited friends and I have been really psyched about that. Thank you to those of you who are new and welcome!! This was a very interesting week for Dr. visits. A combined visit at Children's Hospital with the surgeon who will do the surgery to untether the spinal cord and also a facial/cranial specialist was attended by Jen, Lance me and of course the Warrior Princess. The expectation was to solidify plans for the upcoming surgery and Jennie thought it might be a good time to try to close the little cleft on Chloe's eyelid in the same surgery. The specialist was really quite taken with little Chloe, I believe, and after some conversing realized she was 'the' case he had been consulted about early on in her life. "it sort of 'all came back to him' and it was much easier for him to relate about her future. The spinal surgery should not be extremely complicated, it sounds like they are done there more that one would expect. There is a small band at the bottom of the spinal cord that does not allow it to move freely. It will be a small incision and snipping of this band and Chloe should be in the hospital for about 3 days on this one. There were several surprises along the way, some more positive than others. When talking about the cleft on the eye, the doctor made it very clear that this is NOT a simple surgery. Chloe does not have the occipital bones beneath the eyes, and if they do not wait until she is older and more likely to accept the rib bone, or hip graft, and the cleft has already been fixed, things could get hairy. it certainly is our greatest hope that when Chloe starts getting the jaw distractions, all will be well...that there will be no rejection of bone or infection or who knows what else! These things happen though, and the older she is, the more likely things will be successful. So, if they fix the cleft now, then she happened to reject the bone under the eye for any number of reasons, a succession of surgeries would take place, all of which might change the original fix, shape, functionality of the eyelid. So, this doctor says this is complicated and will NOT be one of the first things to be done. The good news is awesome, although we now wonder just how we will feel when it is accomplished. This doctor believes that the tags of skin on Chloe's face can safely be removed now! Removed when the surgery on the spinal cord is being done! He does not believe it will be a big deal, unless of course, it turned out that they were more connected to ear canals than thought. At this point though, it looks like Chloe may be getting a new look! We are all so used to seeing her as she is now, she is Chloe, Warrior Princess...you really don't even see things that once were quite distracting. I am sure it won't be hard to make the adjustment, but it is an interesting thing to ponder. WE are used to it. I can never forget the the little boy at Kadin's party who had never met Chloe. He was about five, and of course very curious about her...she is different, carries a ventilator behind her wherever she goes, breathes through machines, has alarms that go off when least expected. Curiosity is curiosity. It just took me off guard when he approached Jen when she brought Chloe out for the cake, casually walked up and innocently said, "Where are her ears?" Jen being Jen, didn't skip a beat and answered, "Well God made her different. She is special and doesn't have ears. When she is older, she can have some made." His reply? "Oh. Okay", as he turned to watch Kadin blow out his birthday candles! Simple childhood question, accepted simply when answered simply! Wonderful! But what struck me so amazingly was how we just come expect certain thing as we grow and when they aren't that way, is is SO APPARENT! This is what makes it so hard socially and emotionally on our children growing up. It does not seem to be taught, it is just innate, an expectation of what should be! The doctor stated to us how kids like Chloe need such special upbringing in order to retain their self esteem and mental health. Children with less issues can be very much more disturbed without support in families and friends, or much worse that Chloe and have an awesome sense of their selves. WE will MOST certainly be doing all WE can to ensure her growing up healthy and happy! So, those are the basics this time. This upcoming surgery will wait until after her first birthday, April 20th! if you can believe it! Most likely, the date will be the end of April or early May. We are all very happy that she can stay out of the hospital a while longer, but also grateful that issues can begin to be tackled while she is little to some extent. Thank you so much to all who hang in here with us! I count so very much, as do Jen, Lance and the rest of this family, to have you there backing us up in prayer and sending your special energies for healing and happiness. So far, SO GOOD! God is answering our many, many prayers! Can't stop now! Love to all til next time! Nancy

Chloe is Fitting Right in to Family Life!

January 18, 2010 Great things are happening in the life of our little Warrior Princess. Chloe will be nine months old in two days! When I reread some of the things I have written over these past nine months it does not seem possible that we haven't lived an eternity. Time really is so relative a concept! Those early moments, days, weeks, months...wow! Some days so grueling, so scary-some days so hope filled, so full of joy-some days grueling AND full of joy! I am just thrilled to the bone to be able to report such positive and sometimes remarkable news since Chloe has been out of the hospital! Time seems to have slowed to a fairly normal pace, acceptance of life after Chloe's birth is becoming the new normal and adjustments are coming along well. There will be many times ahead to 'test our metal' as my mother would say, but for now, we are thankful to God each and every day for the special time at home without new issues to deal with. Miss Chloe is THRIVING! As you can see from pictures, she looks absolutely healthy and continues to develop as babies do! Her mommy and daddy find ways to include her in so many, many of the family's activities and as life unfolds as it is suppose to, she has been included in family gatherings and even for a while in Kadin's birthday party! Jennie is careful not to expose her to many germs or too much stimulation, but she seems to have found a wonderful balance in all things. Sierra and Kadin both have had colds and of course this caused a bit of anxiety. TONS of hand washing, sanitizing and some built up immunity in Chloe prevented her from catching them and we all just applauded her! It has been so cold here most of the winter so extra precautions are taken because of the respiratory situation, but Chloe also has had some time out in her stroller checking out the neighborhood! I hope everyone has seen the picture of her in her lamby coat! It is adorable and they were on the way out the door for a walk. I just love being able to say that Chloe has done regular, everyday, normal baby things! I certainly had moments earlier on that I wondered if this would ever be the case. Let the good times roll! She has had some difficulty with getting a couple of teeth in, but boy are they cute! Once they all pop through she will have five. Jennie is so funny. She has a beautiful smile, but does sort of have 'big teeth' as she says. Unfortunately, says Jen, Chloe seems to have inherited the teeth from her mommy! They fit her though and just make her cuter with each one that pops through. I do believe that the dentist wants to be included in her next surgery to get some really good x-rays while she is sedated in order to get an idea of what may be happening in this area. For now, she teethes like baby teethe! The hardest tooth presented some pain and Chloe does have such a high pain threshold that reacting so strongly, with real tears even! said a lot. One of the hardest things for all of us I think is not ever having heard her cry. She certainly can show displeasure with looks on her little face or extra kicking of little feet, but because of the trach, there has never been sound. Someday. She continues to learn more signs and with Sierra's help and devotion, will be signing sentences in no time! After Kadin's birthday party I hung around for quite a while, part of the time Sierra was teaching me the American Sign Language alphabet! We also watched a video and looked up a few signs in a sign language book they have. Fun, fun, fun! The teacher in me LOVES to have Sierra teach ME things! Two things I know Chloe will never be without in this family are love and exciting activities to take part in! Tonight, I am VERY happy to report, Chloe has had the second night in a row of a NEW NIGHT NURSE! Hip Hip Hooray! This has been one of the more challenging parts of having her home, as day nurses have worked out so well and night nurses have been...well...not working out so well. So, it does look like a good nurse has been trained and so far seems to be a good fit for the family. They have had nurses who fall asleep and nurses who have not been up to the task of taking on little Chloe. She is complicated, but really not that hard to deal with in the nighttime hours. She sleeps through most of the night and rarely seems to have the oxygen level drop anymore as long as she is suctioned regularly. It does take a special nurse to do this though, and hopefully this new one will be very special! Another one is in the process of training, so there may be TWO before you know it! Prayers, prayers, prayers on this front still, as this has been quite exhausting for Jennie because she is the one mostly up in the day and the nighttime both! My daughter is quite an amazing woman and I will never be able to express how proud I am of her. Lance absolutely does his part, but when there IS work this winter, that is what he needs to be doing and we like for him to have a bit of sleep to keep him from falling off of roofs! I couldn't be prouder of both of them! I'll leave it at that! So, with nursing in place and just a fairly normal schedule of life in the making, so far 2010 has been going quite well! Chloe will be getting a new and much better hearing aid this week from another parent in town who is not using it now. This is very exciting! She is healthy and we are wealthy in so many ways that have absolutely nothing to do with dollar bills! I remain forever grateful to each person in this group who continues to pray, encourage and support us all. I am following so many children in need of prayers and can truly share my experiences with this group in a very positive and hopefully encouraging way with other families. YOU prayed for us when we barely knew our own names anymore! YOU offered love I never knew existed and shared pieces of your own lives that kept us hopeful. YOU are all awesome and we thank God for you! One of my friends has a FB group titled Pray It Forward. Please look it up. It is what you all have enabled me to do! What could be better than that? Just look how far we have all come together! Peace, love and God's blessings to you all, Nancy

Chloe's Holiday Update! Jan. 2010!

January 5, 2010 2010! Holy Cow! What happened to worrying about Y2K? Seriously, time moves at warp speed when such one leads a wide and varied life! An uninteresting life is something I have never been able to shout out to the world! Having Chloe join our family, although very unexpected, shouldn't have been a surprise! And, Jennie and Lance's unsurpassable ability to care for this little Warrior should not have surprised me either! This holiday season brought so much joy, it is a shame I have been so remiss in reporting its wonders on a more regular basis! So, let's get to it! It has been seven weeks since Chloe made her journey home into the warm and loving bosom of her family! Much of this time has been spent integrating her into her family's lifestyle and catching her up developmentally. Being in the hospital for the first seven months certainly slowed her down a bit, but Chloe being Chloe, and Jennie being Jennie, we KNEW that wouldn't stay the case for long! Chloe has made so much progress! Coming home around the holidays allowed the family some normalcy, some continuation of tradition, with Chloe just being an added blessing and extra special addition! Thanksgiving at the cousins house led to more outings, like the all important visit with Santa Claus! I wonder if this particular Santa had ever held a baby on life support toting around a ventilator before? If not, he handled it brilliantly and probably said some prayers of his own as Sierra, Kadin and Chloe skipped away after leaving whispered wishes in his ear! This seemed to be about the time that Christmas angels started showing up! Jennie had taken her own camera, knowing that they would not be able to afford the picture the elves take of the kids with Santa. Turned out 'they printed a picture by mistake, so went ahead and framed it' and gave it to the family! Nice elves! It was such a great picture, one that we are are very grateful to have! It is in the pics here now. Talking of Christmas angels, I hope I do not leave out anyone who helped to make this the BEST Christmas it could be! Times are tight at the Cooper house, as Lance has had little work due to our extremely snowy and cold winter. Having Chloe at home was plenty for mommy and daddy, but you know kids and Christmas, and Sierra and Kadin had plans for Santa! So, thank God for the angels that seemed to appear just when they were needed most! One rare night when there was actually a night nurse, Jennie and Lance were afforded the opportunity to attend Lance's Christmas party. This was a VERY big deal, as I could not be there that night, and without a nurse, there was no way Lance could have taken Jen with him to the dinner. But, because of the nurse and a babysitter for the others, they did get to attend, and not 10 minutes after they left, a very special knock came at their door. A Secret Group of Angels came delivering a little decorated Christmas tree and three jars of change that had been collected by strangers! They would not leave their names, just met the kids and were on there way! Needless to say, Jen and Lance were quite disturbed that these angels got away without them even meeting them, but prayers of thanks were said, and love was in big supply that night! Those angels have a way of being pretty sneaky! Another wonderful moment came when a family from the organization There with Care arrived. This group was known to the family while at Children's Hospital, at various times they would deliver boxes of food that could be eaten at the hospital. They also started Chloe off beautifully with a lovely bag of baby items, nice things like blankies and clothing, toys and books for the the siblings! Very lovely deliveries never failed to bring joy in some very sorrowful times! Well, a certain family from there chose Chloe and Family for Christmas sharing! Such beautiful thing were given to the kids, new coats, scarves, hats, gloves, toys and special gifts for Chloe! Jennie and Lance were given gift cards for dinner and a movie, hopefully we'll get them out to use them soon! A very special friend that I have met through this group sent money to help with any expenses that might need to be covered, of which there were many! Bills! Our prayers of thanks have been plentiful and so VERY HEARTFELT! If there ever were a year that needed an extra special ending, this was it! Kadin and Sierra especially needed some extra love and attention. They very courageously and with so much love spent day after day after day in the Children's Hospital with their stress-filled parents and precariously ill baby sister. God sent angels to make this one beautiful Christmas! Thank you God and a big, big thank you to all angels! Even Lance's boss, who I have not always spoken glowingly of, was TREMENDOUSLY helpful throughout the season. Lance has an eight year old son in Montana who was not going to make it home this Christmas because there was no money for the plane ticket. Enter the boss, who happily paid for the ticket and also got the much needed bathtub put in where there was only a shower before! This was difficult with Chloe and bath time, also Sierra and Kadin had been missing baths since moving into this house! Thank you John! Big brother Donovan got to know Chloe a little better and it was great to have him, he just had to go away much too soon! Jennie and Lance invited the whole family to their house for Christmas day. Lance cooked an amazing meal, we exchanged gifts and had a very normal holiday celebration once again. Chloe was an angel the whole day through! Time flew by, all of us were over extended and sometimes, like other families living stressful lives, we had our moments. Emotions vary so much, depending on how much rest is had, how much work there is or isn't, how many nurses show up...or don't, the world and all its inconsistencies! We all have done our best to keep up with life on a one day at a time basis! This IS the only way to live it! We were able to have Chloe and her family to our house for New Year's Eve for a simple but wonderful dinner and Chloe even got to meet her dog, Lila! We took over the care of Lila about a month into the hospital stay, She is a very special dog and I think would be an especially sensitive pet for Chloe to have someday! Jennie showed Chloe the sign for dog and Lila and I'll be darned if she didn't try to imitate it immediately! Such a smart, smart baby! Grandma's pride and joy if you don't know by now! I guess the most exciting thing to add tonight is that Chloe has begun to be MOBILE! Therapists and Jennie have been working on Chloe pushing up on her arms and hands to begin crawling, which she is attempting, but Chloe has figured out an easier way! By laying on her back and pushing with her feet and lifting her body up and down, she can SCOOT on her back! I got a very excited call from Jennie last night, describing Chloe's travel about three feet across the living room floor! After celebrating this accomplishment, she spotted their sweet, sweet cat, Mary and head her way. Jennie said that Chloe moved in Mary's direction, and after getting there, began to give the dog sign she had seen a few days before! She had made the connection between furry dogs and cats! Amazing! Her signing is much more developed that the therapist expects and we are all on cloud nine knowing this and getting on board with learning the signs. Sierra schooled us all at New Year's dinner, showing us absolutely every sign the family has learned so far! She is five years old and loves little Chloe oh so very much! Chloe feels the same way, and often signs for Sierra to come to her! Precious moments! Moments we might never had had but for the grace of God! This was a particularly sweet Christmas for us, as you can well imagine! Financially, it was tough, but the community in Ft. Collins is beginning to have a bit of awareness about Chloe and hopefully will become more involved in the lives of these very special angels of mine! I wish I had about two clones of myself, so that I could do more. My 85 year old mother has been living with my husband and I for about three months now. The needs are great from one end of the age spectrum to the next! God provides me with most of the energy I need to keep up with it all! Unfortunately, I did not get the time to update as I hoped! Sorry you have such a long one to read now! Chloe is thriving! She has two new teeth and rarely, rarely cries! She smiles, plays, naps...continues to offer us the most amazing lessons in patience, tenacity, faith building, finding the most wonderful moments in the simplest of moments! She sits alone and can hold herself up, weight bearing on her legs at an activity table just for her! She tries SO hard! So we will NOT stop trying and believing right beside her! We are all in this together, just still trying to figure out how to make it all work! It is very difficult to not have night nurses, this is an issue that stands alone and I will address my frustration there at another time. Thank you to our day nurses who help so much! Praying for this help is very important at this point! So, my sweet friends and family, that is the best I can do tonight! I am tired and it is late. Of course, I must make my plea for you to please invite ALL of your friends so that our prayerful community continues to grow! I promise to get back on track with the writing now that the holiday season is over! Happy 2010! My hopes are that we continue to have progress to report throughout the year! Love to all! Nancy