Bad Summer.

Sorry for being negative! I took Lydia to see the doctor today because of unbearable ear pain. She has an infection and possible strep throat. While we were there we had the opportunity to check her weight using the accurate scales. Her pre-op weight on the same scales on June 16th was 33 1/2 lbs. Today, July 26th, it was 28 3/4 lbs. She has lost nearly 5lbs. She looks nothing like her identical twin, Eliza.
Tim and I reached an all time low, last weekend as we watched her reject one too many small meals and we made the decision not to give her the strong pain medicine that she needs for the nerve episodes. We figured that the "not eating" was becoming more worrisome than the distress and pain of the pins and needles.
We have the number of an acupuncturist and we are going to give him a try. Nothing to lose there. Meanwhile she is on cyproheptadine (as of today) to increase her appetite, Neurontin- for her nerves, antibiotics for her ear/throat infection, and then just the mild motrin/tylanol for the nerve pain.....oh and as much food/drinks as she will let me give her, which up to now has been minimal.
I am a wreck!

Back Home

Well, we're back! Again, it has been an emotional roller coaster ride. Dr Paley saw her the morning we flew home just to see if we did need to cancel our flight and stay for another operation. He said that what had happened was very uncommon. And he figured that her loss of sensation was caused by the tourniquet which they put on her to stop the blood flow so that he can do all his surgical artistry. There are parts of her foot that have gone to sleep and the pins and needles sensations that she experiences as the nerves try and wake up again, are incredibly strong and send her reeling and thrashing around. Dr Paley said it could take weeks for her to recover from this. So she is on the strong Roxicet medicine and now a new medicine for her nerves, the result being that her appetite is depleted and she is a little dizzy. During this trip Lydia watched one of my favorite children's films called "Pollyanna". I bought it for her and Eliza, on their birthday and so Lydia watched it again and again. So being inspired by this wonderful story, I am now going to play the glad game and say....I am glad we are home, I am glad that Lydia will improve, I am glad that we are lucky to be able to have the amazing Dr Paley as Lydia's surgeon, I am so glad that Phyllis came with us to help out (She is amazing) and I am glad for all the love we recieve from family and friends. Thank you, thank you.