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!