Thursday, November 12, 2009

Recent Updates on Chloe Going HOME!

I have been amiss in my duties! I originally write this on Facebook and then copy it to here, which I did not do for the past couple of write ups. Sorry, here they are! Good news all around, so happy reading!

October 30th, 2009

I have just returned from spending quite a few wonderfully fun and relaxing hours with Chloe. She seems just fine and the doctors say that they will just watch, but that nothing seems too amiss. I thought that she looked better than ever and wonder how much of today is prayer being answered or how much of last evening was an over reaction and unnecessary stressor for the family. At any rate, it doesn't matter, because I got to play with Chloe and also did a trach change with the respiratory therapist guiding me. Not too scary and another thing done on my to-do list. Chloe was really quite active, clapping, kicking, smiling, high fiving! (I'm sure it's not a word too) and really engaging with me more than ever. We ended our afternoon with her in my arms, cuddled in and asleep. Oh, what a delightful feeling for both of us. When I returned her to her bed she stirred and got mad until I cuddled as close as I could get without hopping in the crib! She just needed to know that her Grandma was still close. So, keep praying loved ones! I know that God is listening and I know that He is taking very special care of the Warrior Princess. Thank you for your love and concern, Nancy

Nov. 5, 2009 November??? You have got to be kidding me!! Where in the world have all the months gone??? So, it really is November and it really does look like the Warrior Princess will be leaving the hospital soon! Today, I was at the hospital learning all about the home ventilator. Jennie's friend Jasmine and I were trained together, both of us feeling a bit of trepidation in the beginning, but after a thorough lesson by Ernie, the Respiratory Therapist, we both felt pretty competent I think! Jasmine has not been at the hospital much and was a bit intimidated by the whole scene, as we all have been at times! I was very proud of her and her willingness to learn and offer herself to the process. She lives just down the street from Jennie and Lance and having another person there at times to share in the responsibilities is key. Anyone who plans to be around much is being encouraged to learn everything possible about the trach and ventilator. It is, of course, a huge responsibility to have...Chloe needs life support and the implications of not being prepared are immense. We are all taking our part of the responsibility VERY SERIOUSLY! I did have a bit of fun Chloe time after getting my education for the day but Chloe had been awake much of the day and was really needing a nap. So, Grandma just has a way about, I HAD to cuddle her in my arms and pat her little butt a few times and allow her sleepy time! She was so, so cute as she tried to hold those eyes open in order to have some play time too! But, sleep won out and as she closed her eyes, she continued kicking those chubby little legs in a grand effort to stay awake. It was nice to know that I still have the 'touch', even though I really would have preferred a little more play time today. Kadin was there today, and had reached the end of his 3 1/2 year old patience level for the hospital today, so I brought him home with me. What a delight he is and he loves his little sister soooo much! Jen told me today that Sierra told them that the day Chloe comes home ,'will be the best day of her life!" How incredibly heartwarming is that? So, the home healthcare people are just about ready for Chloe. It is my understanding that the nurses that will be coming to the house are also being trained by Ernie next week. I would think they already have some knowledge, but who knows for sure? I would think some nurses go their entire career without dealing with a patient on life support. Anyway, preparation is taking place and the BIG, BIG day NEARS! My, my almost seven months will have passed when she is taken out the door on the 16th! Pretty unbelievable that so many of you have been here since almost the beginning...I'm sure you are feeling the anticipation and excitement ALMOST as much as we are. Keep doing just what you are has helped to propel us this far! I had an idea tonight as I was filling out a request for The Ellen Degeneres Show. She is having the November Giveaways and I have sent information about Chloe and the family in the hope that the story might be picked up and that Chloe may benefit from it. There was a spot on the page for others to tell them about someone they think worthy of a little help. I thought it would be beneficial if as many of you who had the time to write for a minute would do it. It has been suggested to me before to have everyone write to a newspaper or news station in mass numbers in order to get the desired attention, so I thought this might work for the Ellen show. The link follows, or you can just go to her FB page or Google her show for the same information. It would be SO appreciated if you could help! Until later, love and laughter to all! Nancy

Nov. 11th, 2009 This has been a very good week! Everyone here is in preparation mode for Chloe being discharged from the hospital on Monday. It is such an exciting time and really... at times it seemed liked this fabulous day would never happen. It has been sunny and beautifully warm in Denver the past few days. This allowed the walk over to the Dental Clinic in the stroller to be leisurely and fun. Chloe met with the dentist who works with Children's Hospital, of course we have no idea what the teeth situation will morph into as the years go by because of the lack of jaw, but just having the visit gave Chloe a head start. He says that she does have teeth that should be coming in relatively soon, relative to Chloe's own schedule we say! The development is a bit behind schedule but certainly to be expected. It was really great to watch Jennie out with the baby in the stroller, not worrying about a thing that I could see. I was there to handle Kadin mostly and got to observe my daughter just taking a stroll with her baby down the sidewalk! What a beautiful sight. The baby, the stroller, the sunshine, the SKY! Chloe in the world is a beautiful thing. We went from there back to the room, where an hour later a procedure was done from her bedside to check the condition of the bronchial tubes once more before leaving on Monday. Everything looked pretty good and the little branches are not 'floppy' at all. Having been on the ventilator, she does run the risk of this happening, which would just require more pressure support in order for them to work at capacity. For now, all is well! There seems to be so much to remember, to know, in order to keep Chloe safe and well. Jennie and Lance feel prepared and competent and with God running the show, I think we're good! So, as we count down our days, four more from now...leaving on the fifth, we ask for your continued prayers for Chloe's well being and continued good health. The home health nurses are in the process of being trained and we are praying for the best of the best! God is good and we are all so happy right now!!! Love and blessings to all of you who support us so endlessly, Nancy

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