Chloe had such a wonderful 1st birthday !
Friday, April 23, 2010
Tuesday, April 20, 2010
It's My First Birthday!
Here are some photos of Chloe taken pretty recently. Sure hope this is a successful link!
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!
Tuesday, April 13, 2010
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
Wednesday, March 24, 2010
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.
Sunday, February 21, 2010
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
Monday, February 8, 2010
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!
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