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