Needing her beauty rest...

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.

Prayers for Magdalena....

I wanted to ask that we all pray for a precious family I have never met, but love their precious little on so much. The parents are Noah and Julie and Magdalena was born yesterday morning at 8:18 a.m. She was born and needed no oxygen. Their website is noahandjulieroberts.blogspot.com
She does have full Trisomy 18. We know that this is a terrible illness but through Annabel we know that God is in total control. Thank you for your time and prayers for this family.

All is well here in Southeast Texas...

Just a quick post to say that all is good here in Southeast Texas. The tropical storm came in this morning around 7 a.m. We are thankful that it didn't strengthen and become a hurricane. We had some wind and some rain, but so far no flooding. We briefly lost power this morning. I want to thank Maxim Health Care who made sure the power was reinstated right away. They place the call to the electric company and within 20 minutes power was back.
Annabel had her best night in over a week, last night. We left for Dallas last Thursday and she had the beginnings of a UTI. By Saturday night she had the beginnings of a respiratory infection. We were already on an antibiotic and so I think it will not get too much worse. Sunday night she was up most of the night unable to breathe. After much suction yesterday, breathing treatments and a decongestant she slept very well last night. I think she is enjoying the sound of the winds and rain as she is still sleeping. I wanted to include a picture of Annabel and her nurse LaToya. She has been such a huge help to me. This enables me to run my errands without taking Annabel out constantly and also do a bit of work. Just wanted to say thank you to her for helping us out and taking such good care of Annabel.

The twins turned 16 on Sunday. So of course yesterday morning bright and early we were off to get their drivers license. No of course they are not my first to drive, but with two at time????? There was a lot of praying yesterday each time they left the house. They were my babies for so long that it is just hard to believe that we have hit this major milestone. I remember the day we brought them home and all the joy that twins brought into our home. Yes, there were some hard times, just with being busy. I know we would not trade one second of the pleasure that they have brought to our lives.