Friday, July 9, 2010

We have a new GI doctor!!!!!!!!!!!!






Our new GI doctors office called today to give us an appt. time. She said I was so lucky because they had a cancellation for this Tuesday. I said GREAT, we will be there. My heart quickly sunk when I realized that I will be at orientation in College Station with my twin daughters. As my entire family will tell you that I do everything for Annabel (they really understand) and I know how important the first step with their college process is. Mel and I both want to be there with them. Before Annabel, they were actually our babies! So now our appointment isn't until August 17th. I have asked the nurse since this new GI took care of Annabel and ran all the motility test in the hospital if he could just call us with a plan of care, summary of findings and then we will see him on the 17th for our appointment. In my heart I know I have done the right thing in choosing to go with my twin daughters.
Annabel will be left in great hands and I do mean great, wonderful and loving hands. The pictures above are Annabel and Rebekah, her nurse. She has been with us most days since coming home from the hospital. She is so good with her nursing skills, but her heart is so sweet and caring. To me she is the total package! I am not glad that Annabel needs the nursing care but if it has to be she is a true joy to have in my home. She is working much overtime because I have turned out to be hard to please. They have sent many other skilled nurses by but I really need to feel like they will do more than just the medical aspects of her care. Annabel loves to be up and around, playing with you and being stimulated with her toys, music and her equipment. She is also a very Godly woman and her voice when she sings hymns to Annabel while rocking her are beautiful.
Of course, then we have Tara who after working all day will be coming each night to sleep with Annabel. It is the only way I can leave her and not be crazy with worry. I am sure she will be so spoiled rotten when we return home. Thank you, Tara for agreeing to miss your other events to be here with your sisters. Also Derek and Linzy will be coming by to check in and play with Annabel, so I am positive I won't be missed!

Thursday, July 8, 2010

Progress????

Not sure if this is progress, but I have decided to change GI's . The crazy thing is that we had to wait for Dr. K (our current) GI to give us the OK that we can switch to another doctor in the practice. I really believe it is best for Annabel to stay at the children's hospital for now for her care. So we are asking that the doctor that did her motililty workup take over Annabel's care. We still don't have results but are hoping that we will get an appointment to find out these results. Because of Annabel weight gain they are cutting her lipids in half, and cutting the dextrose (sugars) in her TPN from in the 900 to the 700's. Whatever all that means, we should see less weight gain. Hoping this will have her breathing easier. We have also realized that her residual in her bladder are quite high again. But hey, after doing TPN/central line, cathing is a breeze. The following picture is of Annabel at her highest weight ever. She almost looks like a five year old and surely feels like one. Everywhere we go people comment on how much she has grown recently.

Look at these arms, legs and cheeks...

Here is my picture of Tyler while we were skyping two days ago. It was so good to talk with him for a very long time. He looks great and I can tell he is happy to be in the count phase of this journey. Thank you for all praying for him while he was gone.

Tyler and his great smile!




Tuesday, July 6, 2010

Wait, Weight and more waiting...

Two words come to mind about the last few weeks. The first is that we have been waiting for more than 3 weeks for results of Annabel's last hospital stay and her motility testing. We drove to Houston last week for results and he didn't even know we had the test done. That was frustrating. As of today we still haven't received the call that was promised with the results.


The second weight, has to do with Annabel gaining 4 lbs. since being discharged. The nutrition she received in her central line does put weight on but we were told last week at the appt. she had gained 2lbs. in a month and since our appointment last week she has gained 2 more pounds. She is not comfortable with this weight and something is being decided about adjusting her TPN and Lipids. Also her liver enzymes continue to go up and up with each week her blood is drawn. There are other things going on with her Potassium and Magnesium, but I don't understand all of it. So I will wait....


We did attempt some speech therapy this week. She has regressed but that is to be expected. The following pictures are of her attempt at speech. Overall, with our sweet nurse Rebekah at our home, Annabel is very happy and being stimulated and well cared for. I have learned the TPN process and changed it over the weekend but I would prefer when Rebekah is here that she do the change.


Some good news is that my Tyler (soldier) is coming home at the end of July. Just got the news today and we couldn't be happier to have him close to home. He is considering going active and this could mean that he would be going again but for now he will be home and I won't stress needlessly.