Sunday, January 30, 2011

So thankful...

There are many things I am thankful for in this life. Of course, you know I am thankful for Annabel's life and all the people who she has brought into our lives. To each and everyone of you who pray for her journey and the strength and peace for me, this is priceless...
This weekend I was able to get away with my family for my father's 80th birthday. I am so blessed that he is in good health and takes care of himself. My sister, brother and myself wanted to take him somewhere that was fairly close (I don't like to fly) and that would be new to most of us in the family. So my mother, dad, siblings and most all of our children headed out to New Orleans on Friday and returned today. We all seemed to have a great time being close together in the hotel, enjoying meals, shopping and laughing together. (OK, let me say Bourbon Street is so not my favorite!) Why would anyone want to go there and put up with the crowds, drunkenness (is this a word)?? We went and had a nice dinner at Brennans and then most everyone wanted to walk, since the air was nice before heading back to the hotel. The minute we turned on this street I went in total anxiety mode. Let me tell you it isn't even Mardi Gras. I can't image being there anywhere near this time. It took what seemed like hours to get off this street. I don't want to be anywhere that needs that many cops/guard on horseback ever again.
I hope this doesn't offend anyone but this isn't my ideal of fun.
Yes, by the way my twins of course are wanting to go to Mardi Gras and think I am the worst parent in the world for not letting them go. I can't stop them in a few years but for now I don't feel it is a safe place to go. My heart broke for young girls who appeared to be their age, and where clinging to guys and neither could walk a straight line.
So sorry from getting off the point of this post. I love my dad and am so blessed for the wonderful life he has provided and I am thankful to God that he has blessed my father with a good life of health. Also, a huge thank you to my sister for prompting my brother and I to get into the celebration mode and appreciate these 80 years. To my brother and my nephew who hoped a plane from Dallas to New Orleans to be with us. To my family minus Annabel and Tyler who weren't able to attend. Tyler had the flu and it just wasn't a place to take Annabel.
Debbie and Rebekah kicked in overtime to make sure Annabel was cared for and allowing me to go.
An update on Annabel is that she is going to school most days. She did have an EEG and CT this past Wednesday due to a couple episodes that the nurses felt could be seizures in the past. Of course in the hour that she was hooked up she didn't have anything close to things looking like seizures. The findings of the EEG was abnormal. We have been told that this is what is to be expected. The neurologist did say that this puts her at high risk for seizures but I am holding on to the fact that as of this time we aren't opting for any seizure meds and will just watch her. The next step would be a much more involved test that would require a few days inpatient.
Annabel is slowly getting back into therapy when she feels well. She seems to be happy most of the time. She still has many episodes of discomfort in her belly. I will be videoing the next couple weeks to show the GI doctor. Annabel continues to be TPN/Lipid dependant. Her GI doctor has commented to me when consulting that he doesn't hold out much hope for her gut working again. I just feel he is frustrated that we can't successfully put anything in her belly. It seemed to hit me hard at our pulmonary appointment this week. Our pulmonary dr. talked with our GI doctor concerning some meds that he wanted to resume for Annabel concerning her secretions. The GI dr. told him he didn't feel there was any hope that her tummy would be working again. We are continuing to give her small feeds of breastmilk to have something going into her belly. She is still off all her meds since they have to be given into her tummy.
We are happy to see her smiles back so much of the time. She is hugging and loving and charming everyone she meets. Thank you for the continued prayers and I will try to post some pics this week.


Anonymous said...

It makes me so happy, that you have a comfort level to leave her at home with the Nurses. I am so proud of you for doing this. Way to go. I know Annable was well cared for, and had a great time. You will always remember this time with your dad. Let me know the date and time of her ARD as soon as possible so that I can arrange to be there. But, I totally agree with the crowds, I do not do well in them myself. Ben, laughs at how I behave when in a crowd. I am sure you have heard at least one of his Disney World stories and his crazy mom. Love all of you very much and can not wait for my hug from Annabel. Once again, very happy that you spent time away with family.

May said...

I can feel your disappointment at the finality of the tummy not working report from the doc. It is so hard to hear the words from docs. hope the central line keeps going well and lesser complications.