12/27/08 - Giving Back!!!
Kayleigh wanted me to tell everyone "Thank you." I'm serious, she turned towards me tonight and said, "Hi Daddy! Please tell all those wonderful people out there that I am so thankful to be here and it is because of their prayers that I am alive." Ya know, If Kayleigh really could talk and say what's on her mind. I think she would be saying those exact words. Maybe, she would tell us how crappy it is to have one tube in one nose, another tube in the other and an even bigger tube down her throat. Do you realize how big of a baby I would act if I had to put up with that. I complain when I have to get one IV and she has several. What do you think she would be saying if you could hear her talk???
Sweet Kayleigh is doing good today. I feel she has not looked as good as she did today in a long time. Her color was good and she was satting great for several hours that I spent watching her sleep. She did wake up a couple times when I let go of her hand and looked around as if she was checking to see if I left. Once I placed my finger back in her hand, she squeezed it and fell quickly back to sleep. Kayleig weighed in at 6 pounds - 4 ounces. So that is a true weight after getting rid of her swelling and is off the Lasix (diuretic) medication. We are pleased to see that she really did break the 6 pound mark and is on her way to outgrow this disease that is trying to kill her. She is on continuous feeds of 2 ml's/hr, so that should help put some more weight on fairly quickly.
As of right now, her jg-tube procedure is scheduled for 12:00 noon(est) on Monday. If we have any doubt that she is not the best she possibly can be for this procedure, we are going to pull out and hold off until she is. We can not risk this procedure taking her life right now. She needs this procedure to reduce the damaging of her lung tissue, but we don't need to risk her dying because she is not ready yet. It is so hard to consent to these procedures because you know she needs it, but only if Kayleigh could tell us whether or not she is well enough to handle it. Please pray that this procedure is successful and we can continue down this road to recovery.
I wanted to take the time to shine the light on two wonderful people who I feel need a helping hand with the journey God has placed before them. If we ever had a question, someone out there has an answer. God has placed all of you in our life to help us and for that, I feel like I want to do the right thing and give that to someone else.
The first couple that I would like to mention, are Michelle and Jessie Jump. They are from Illinois and have been following Kayleigh's story for a while now, but have been blessed by God to start a family of their own. Unfortunately, Michelle too has Pulmonary Hypertension and is not able to have children of her own. But, with a loving family and a great Christian organization behind them, they are going to adopt a child in the near future. They asked me if I had any friends or family that have been through this process to help guide and prepare them for what's to come. So, I am asking ALL of my friends and family, which are ALL of you out there who have ever met someone or experienced this themselves, to help this beautiful family with their decision to adopt a child. Michelle and Jessie can be reached at (JMJump_04@yahoo.com) God Bless you guys for not letting something get in your way of growing a family and I will be sure to pray that you will be overwhelmed with emails, guiding you in the right direction. God Bless!
Second, You all know Rachel & Ryan. (Carly and Hannah's Mom & Dad). Well, if you don't, you must read both blogs of their precious angels and see what this beautiful family has been through over the past two years. We are so blessed to have gotten to know Rachel and Ryan through Kayleigh's journey. Even with the troubles in their own lives, they have been able to reach out and be a shoulder for us when we needed one. Carly approached me last week with an idea to give back to the NICU and it is one amazing way to help those who are in need. She has designed a onesie drive to donate outfits to the preemie's at the hospital where Kayleigh is right now. There are over 100 preemies in there right now and if it weren't for us bringing clothes for Kayleigh, she would be naked and wrapped up in towel that has been washed million times. They usually rely on people to donate clothes and since the market has been tight for most people, the clothes there have been slowly diminishing. You can read more about what this amazing family is doing on their Onesie Drive Website. Thank you Rachel and Ryan for everything you are doing and we will pray that your Onesie drive is a success. God Bless!
"Thank you God for blessing us all with your love. Your word is so obvious through Kayleigh and the supporters from all over the world. I pray that you give us the strength to continue in this journey by holding you up high in front of us to lead the way. Give us wisdom and time to find ways to help those in need, even when all of our plates seem full"
"In Your Precious Name!"
The Freemans :)