Friday, August 15, 2008
I want to apologize for yesterdays post. I was feeling like I needed to make an update, but wasn't feeling very positive. I am going to try to use that as a guideline. The old saying if you can't say something nice, then don't say it!
I was tired, grumpy and sooooooooo frustrated.
God is so awesome! I truly believe God only gives us the grace for today, not tomorrow! I sometimes (quite often) get caught up in the "how can I keep doing this" thing. Well, he gave Annabel and myself a good night of sleep, thank you Jesus! Then this morning I checked my work emails, personal emails and then the blogs that I follow. Right away I felt ashamed of my post from yesterday. As I read about these precious little ones who have gone to their Heavenly homes and the ones awaiting birth or that have just been born, I realized how all of these families would trade places to have their babies in their earthly homes. So as I ask God to forgive me for my whinning and asking that whoever read yesterdays post, just tell me to get a life and be grateful for what I do have.
I do thank God everyday for all of my children, family and friends. But I am especially grateful for Annabel who is a constant reminder of who is really incharge of all that happens in our lives. I chose a picture of when she was very young as my constant reminder of how blessed we are to have been given so much time. I must continue to try to make the very best of each of Annabel's days!
Thank you to all who continue to pray for her! I have also added Magdalena's link to the sidebar, also Baby Vera who is a little over 5 months with Trisomy 18 and Baby Boy Zuckero who will be born this month with Trisomy 18. All of these families need our prayers.
Thursday, August 14, 2008
I want to begin by thanking each and everyone who has been praying for Magdalena and her family. She is doing good at this time and praying for more time if that is God's plan. Please continue to keep them in your prayers.
Overall Annabel has seemed to be doing ok. In the last month I have tried to up her feeds as to put a little weight on her. The dr. wanted 1 pound in the next 3 months. First off, since Annabel had her feeding tube placed she seems to not be comfortable with her feeds. She is always ok with being spoon feed her baby food, but not any liquids. Annabel has been tested many times over for reflux. Not just with barium swallows, endoscopes and then a ph probe. Never has she showed signs of GI reflux. But now there is not a doubt in my mind that she has this. Just yesterday after feeding her 4 oz. of Pediasure in her tube if came right up through her mouth. This happened so fast, I was shocked! She is gagging and wretching after each meal. She has been up since 3:30 a.m. She took a very short nap from about 8:15 a.m. until 9 a.m. We have just returned from her therapies and she is still awake. My gut says stop with the tube feeds and just feed her the baby food. But then she has the UTI issues which she needs the liquids to help in that area. I guess I had become too comfortable with each day! I am hoping and praying that things become a little more settled quick. If anyone has experience this since placing the tube, I would welcome any advice.
Annabel will begin school on the 25th. She will be so happy to see her teachers again and I know it will be good to get back to a regular schedule. We will probably lose our wonderful nurse LaToya. I will not be able to provide enough hours in the evenings to keep her. It is so hard for me to justify her going to school all day and then have someone else come in to care for her. I keep thinking where is my mommy time.