Tuesday, December 18, 2007

Tuesday, Dec. 18


Today was a frustrating day as we started, but we've made some good progress, and it turned out to be a pretty nice day. The doctor called to inform us that the preliminary reading of the chromosome tests show a confirmation of Down Syndrome. We pretty much already knew that, so it wasn't a big shock. The final reading will show us the type, but won't tell us anything about the severity, so we'll just have to see how it pans out. From what we understand, the severity will become more clear as she reaches certain milestones. One day at a time though folks.

Addison has started to turn into an active baby today. She has started eating so much that Rachel is having a tough time keeping up. Up to this point, we've had some troubles not only with her getting the nutrition she needs, but the way we are providing that nutrition. Addison has had a great number of doctors and "consultants" see her, and they all have a different idea of how we should go about feeding her properly. So, Rach and I decided it was time to get all of these folks together and come up with a plan. There is one man who's going to make the decision to release Addison or keep her in the hospital on the 20th. Our goal is to get her home. So, we want every doctor and medical consultant who is meeting with us and working with Addison to know what we need to do in order to make that happen. Sometime after lunch on Wednesday, we are going to have that meeting, so please pray that the meeting goes well and everyone gets on the same page. The frustrating part has been the lack of communication between everyone. The encouraging part is that we have been able to set up this little pow wow. I think Rach is bringing the hammer to the meeting. I think it's awesome when she does that.

Rach and I are doing well. We are struggling to get the rest we need. I think I fell asleep standing up this morning, which I've never done before now, and I couldn't remember the term "sleep deprivation", which probably means that I have a case of it. Neither of us has had a meltdown yet, so we have that going for us. I guess this is all part of what we signed up for when we decided to have kids. And to think that we will have three more after Addison. YIKES!!! Keep praying for us. We need it.

Several people today have said that they love Addison's cheeks and they want to just chew them up. I'm pretty sure that's a good thing. So I've posted a couple of pics for your chewing pleasure. Enjoy!

3 comments:

Jenn Heaton said...

Hello, I wrote you a very long letter and I don't think it sent. My name is Jennifer and I am Jack's Mommy. Skye and Carolyn called me when Addison was born because like Addison, Jack has Down Syndrome. I think of his extra chromosome as an extra special kiss from God. He is the most amazing little miracle I could ever know. I am so in love with him! I could talk about him for hours but for now I will just tell you my husband and I were in your shoes just 15 months ago. We have learned so much and been filled with more joy than we could have imagined. I have a strong desire to visit with you and become friends. When you are ready, please call me or email me. I think there are some things I can share with you to help and the earlier you have these tools the more of an advantage Addison will have. I want to sit here and tell you all of the wonderful things about Jack, but I know you have so much going on right now, so I will share in time, just as I hope you will share about Addison. She is so beautiful. Just love her. She will amaze you.
Trust in God--He created our children exactly the way He wants them to be and I would not change one thing about Jack! My home number is 936-894-9809 and my cell is 979-229-5089. My cell will not ring if I am at home. You are welcome to call ANYTIME, even if it is 2:00 in the morning (I will probably be up anyway!) My email is jenniferpheaton@earthlink.net. While I know you may not be ready, I really hope to hear from you soon. God has placed you on my heart, and I want to know you. I have a vision of Jack and Addison meeting one day!
Jenn

Bree said...

She is so cute! I love those cheeks!! How fast the Lord is teaching you both to advocate for lil' Addie! I hope you get released tomorrow and that all goes well at the pow wow. Blessings to you all. Merry Christmas!

Aaron said...

Congratulations on your beautiful baby girl! Shannon and I can not wait to meet her.

Aaron