This morning, we were lounging in bed, my hand happened to cross her face and she said “I just saw darkness”. I then asked her to watch the darkness with her eyes. She was able to slightly track the darkness from my hand midline to right both directions!!! WOW! What a great week this has been.
6 comments February 29th, 2008
For those still following Lydia’s progress online, we have some pretty cool news. Lydia continues to see light and is seeing light of less contrast or brightness. Blinking lights are the easiest to catch her attention. I found some fun tub toys that have blinking and continuous light options. She is able to locate them pretty easily in low light and moderate light conditions (makes bath time a little more fun,too). I went shopping for some more light toys today, found a glow in the dark volleyball-wasn’t sure it would work since it wasn’t an actual light. But, the amazing Lydia saw it anyway! First we were in the bathroom with almost no light and she reached for it very accurately 2 times (I tried to be tricky) and then she saw it in the living room with 2 lamps and the TV on (American Idol/Ryan Seacrest was on and she HAD to keep the TV on). I was really amazed she would notice it, she was pretty close to it, but you have to give her some credit! This is really getting to be fun and i can’t wait to post her next amazing feat! Keep those prayers coming, we can never have enough!
2 comments February 29th, 2008
So we have been home for about 2 weeks. Finally we are not waking up at 4 am starving. Finally we are beginning to adjust to our normal schedules. I am sure Lydia has gained back the 4 lbs she lost, for sure I have gained the 7 lbs I lost. It has been really wonderful to go to grocery stores and not see live animals and smell the stench of decaying animal flesh! We are so glad to have all the comforts of home.
Lydia was a great traveler, we had a long flight back to the US and a delayed connecting flight to St Louis. She fussed less than the rest of us, I think she was just happy to be on the way home away from IV’s. Our flight arrived in STL around midnight, only 1 missing piece of luggage which was amazing after watching the way luggage is “sorted” after customs in Chicago. We stayed in St Louis at my friends house (thanks Curt,Shell and Ben) and slept until 4pm that day. Unfortunatley, they had the flu and we had the tail end of some Chinese cold, so we decided to say our hellos and goodbyes from down the hall to each other. Seems there was no cross contamination and we all hope to remain healthy.
Lydia’s sight continues to improve. She is not constanlty requesting sunglasses as she did before, she is more tolerant of sunlight. The day we arrived at our home, I turned on the TV and Lydia said “there are lights blinking on the TV”. She has never mentioned anything about the TV before. In the middle of the night last week, we were awake at 3am, Lydia said “What is that light out there?” and pointed to the window. She was seeing the street light which is a half block away. That same night we were still up and she said “there is a light on my CD player, has that always been there?” She was referring to the small red light that illuminates when it is plugged in. Today,during daylight hours, she was noticing flashes of light on the TV again. They were of less intensity and contrast/brightness than the first time. SOOOOOOOOO exciting. I can hardly wait for the next development. Look out Ryan Seacrest, she can hardly wait to see you!
Thank you again to everyone who has made this possible!!! So many people to thank in so many ways!! I hear there have been some pretty amazing poker games in Belgrade lately….thank you guys!! I will try to continue to update the blog as long as there is something to report. Not sure how long the site will keep us. Thanks again!
5 comments February 21st, 2008
It is our last evening here. Bittersweet. We are so looking forward to returning to the comforts of home and seeing our loved ones,but a little sad to leave the wonderful people we have met. So many incredible people from around the world facing their own challenges. I wish each and every one the best and pray they continue to carry this spirit of hope we have found.
Seems the snow we had over the weekend is melting and we will be leaving as scheduled. I still have some packing to do. I went shopping with “the girls” today and got a few things to bring home. Of course I got Lydia some things for being so wonderful and brave. This evening she has been walking up to the nurses and pretending to take their temperature, says they have fever and need an IV. She then proceeds to “put in” an IV and repeat “no pain” as they have said to her for the last month. Something tells me it is time to go………….. She says the only thing she will miss is her new little baby friend she has made-he is a very sweet 3 month old and she loves to hold his hand and caress his head. So cute!
I will update the blog from home periodically and keep everyone informed of the progress Lydia continues to make! Thank you all again for the incredible support which came in many forms, we couldn’t have done this without you!!!!!
Bye Hangzhou!
9 comments February 5th, 2008
Lydia had her final stem cell treatment yesterday. She is doing well today. We are all glad there will be no more needle sticks! (especially Lydia!) After a 20 minute “discussion” with the doctors yesterday, it was decided for Lydia to go to a different OR for sedation and her stem cell transplant. She has had no sedation at all for previous lumbar punctures (only local anesthesia -similar to the dentist) and has felt the needles for the lumbar puncture most every time. I would say she has been exceptionally brave throughout this whole process.
It has been snowing here for the last 2 days, probably have 2-3 inches of snow. As I listen, sounds like it doesn’t stop too many of the crazy drivers out on the road “beep, beep,beep”. Hope this weather doesn’t continue. We are much further south than the area you may been hearing about on the news. If the weather allows we plan to do some souvenier and “knock-off” shopping on Sunday at the West Lake area. As nice as everyone has been, we are determined to leave on Tuesday. It will be great to be home!
17 comments February 2nd, 2008
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