Sunday, January 31, 2010

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 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

Monday, January 18, 2010

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,! 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

Wednesday, January 6, 2010

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