Ughh!

There is nothing more frustrating to me then to have my journal "addiction" interrupted by a loss of access to the Internet. I have no idea why this silly thing doesn't want to work on some days, but for the moment it is up and running so I'm going to type as fast as I can.

Yesterday was .... well... let me just say it was... long. A very long day. Ash I ran from our pedi surgeon, to cardiology, to ultra sound, to radiology, to interventional radiology and then to the holding room for an hour and a half wait while we attempted to bust up some clots in her central line. We finally left the hospital a little after 4 pm. My sweet baby cried and cried and cried as each set of professionals did "their thing". She is so frightened of them all. Even though not one single procedure caused her any type of physical pain. She doesn't trust them and she thinks they are going to hurt her. Everyone was very understanding and didn't blame her for the reactions she had, but like I predicted the crying was exhausting and she slept very, very well once we arrived home.

The ultra sound techs told me that "all they could see was good news", but thats not official. I appreciated the information they offered and the way they treated Ashley Kate. The ultrasound lasted about an hour and she was very disturbed during the whole procedure. She had to lay very still and be held down as they searched for open pathways in her veinous system. God was very good to us and placed a father of two special needs children in front of the machine for us. He was so patient and kind to Ash. Not bothered one bit by her fear or her screaming. He gently wiped the tears off her cheeks and took his time with her eventually even getting her to settle enough to watch the screen with him as the red, blue, and green colors showed up. I have never been more grateful. He was amazing with her and my heart was blessed to listen to him interact with my sweet baby. His first question to me was, "Does she understand what I am saying to her?" and once I told him that yes she could understand but could not speak or answer him he took over from there. It was one of the best experiences we have had during an appointment yet. I left the room feeling so blessed for his two little boys, one who has down syndrome and the other who is autistic. God gave them a very special daddy just like He gave to Ashley Kate and I was thankful for that.

The plan for her central line is up in the air. The one thing that I found out for sure is that once it is decided to remove it she will have to be in the PICU for a whole week. This is very different from the removal of her other two lines. Why so different? Coumidin. It is a lot more complex since she is on coumidin. Every one knows we need to have the line removed, but everyone still wants lots of blood from Ashley's veins each week and they just can't keep up with all the needle sticks and pokes. I'm not sure what we are going to do. The longer it is in place the more at risk she is for infection and those infections are literally life threatening. I just keep reminding myself that God protected her for 14 months with her first line and then another 6 months with her second while she received her chemotherapy. I know He can do it again. The plan at this point is a 6 month treatment with coumidin. She has completed 2. We have a long way to go.

Her chest x ray was good. That is encouraging to know. We have been slowly switching her back to a diet that includes fat. The complications that could arise from the switch would be a re accumulation of fluid in the plural space of her lungs. So far so good and that is a huge blessing.

Now for the most encouraging part of our week. Are you ready for this?
Ashley Kate has eaten 3 consecutive meals of a full serving of baby food. Yes, I said 3 meals in a row! This is the biggest accomplishment we have made in almost 3 years of trying to teach her to eat. I know its only baby foods, but she has to start somewhere and it looks as if she finally has started. There are no words to express how encouraged my heart has been over this. She is sitting at the table like a big girl and eating bite after bite. Up until this week the most she had ever eaten is 11 bites of peas. She has now finished a full jar of green beans. A full jar of savory beef and vegetables, and a 1/4 cup of cereal .

I have a lot of exciting things to share, but its late and I'm afraid of losing my connection before getting it to post so I'm going to close. Thanks for all your prayers for our appointments yesterday. Things went as well as they could. Of course they didn't tell me we could stop the coumidin and blood draws, but I knew I was only dreaming. Hope you all had a great day. God bless. Trish.