Thursday, March 5, 2009

Chemo is OVER!!!!

After that last hospital visit Lukey has been doing great. His body is still recovering from the chemo and will be for a little while. We are about to enter another few weeks of tests, tests, tests. This is always fun (sarcasm). He will have his ct scans under anesthesia, his gfr (kidney function) scan at Childrens in DC (a nightmare), a chest xray, an ECHO and EKG, and an OAE (hearing test). He will have the in depth hearing test in April now since we could not make it to the hospital in time for his last scheduled one. Thanks to Dulles Greenway owners who collect all the tolls and don't plow the roads....anyways I could get heartburn thinking about that.
Yesterday a physical therapist and a speech pathologist came to the house to do an assessment of Luke. He was so excited to have more people to play with. They were very surprised at his strength and ability. They said he has about a 25% delay in gross motor skills and due to the hearing loss he automatically qualifies for speech therapy, although she was testing his hearing with high frequency sounds and he turned his head towards her every time. I think his hearing is going to be just fine. He needs to work on transitioning into sitting up by himself, crawling, and pulling up. In their opinion he is almost right on track. His social-emotional and spatial skills are all on target. I will meet with them again next week for a full report and recommendations, then if we choose they will continue to come and work with him. He has come a long way and I know he will catch up really fast.

Meanwhile, the oncologist is paying pretty close attention to his AFP. The last one was 67. They just did another one, so I can't wait to see what that one reads. I'm not going to let them scare me with AFP markers. I KNOW HE IS HEALED!

My brother was finally able to go back home. One day late because of the snow storm (that's what they're calling it) I drove is snow deeper than that when I was 16...geez...don't get me started. They said the liver/stomach will resolve itself. They gave him some meds to relax his esophagus and keep it from spasming. He said he is feeling better, I hope this resolves itself very soon. It was nice to see him again, although he was missing his family so much. Lukey has a very special attachment to Uncle Michael. Any time he sees him he just grins and grins...we think they have a divine connection.

Uncle Michael and Levi

Uncle Michael and his buddies

We are actively trying to get Lukey off the feeding tube. He has started eating, he just won't drink. I would love to just go cold turkey and pull the tube. That would put his kidneys at risk. He needs a lot of hydration because of the Prograf, it is very hard on the kidneys. He will always be on it, so he will always need to drink a lot of fluids. Right now they have him off his feeds for 10 hrs a day, but I have to give him a bunch of water every 2 is truly a pain. I either have to run it through the tube or push it with a syringe through the tube. Please pray he starts taking fluid by mouth.

I am eagerly awaiting the arrival of Spring! I am so done with the cold. It will be nice to get outside and go places..well a little...before the boys come. Then I guess I will hole up again inside until Fall. I had always said I would NEVER drive a minivan. Then last summer I test drove the Toyota Sienna...what a God send that car has been. I am so glad we got it, because now we are about to fill it up. I still can't get my head around this completely. I have another ultrasound next week to determine...some words that I can't remember. I think it's to determine whether they are in separate sacs or sharing a sac. I have been feeling very sore and stretched lately. I know I have been doing too much. I don't want to be put on bed I better chill a bit.

Levi enjoys the snow

Though we have finished the chemo, we know we are far from being in the clear. We continue to lift Lukey up in prayer everyday. We are praying for all the scans to come back clear, his AFP to drop below 10 and stay below, his liver functions to remain normal, and for the feeding tube to come out.

Lukey loves to bang on the guitar

There have been days that I could not even find the words to pray, I was just too exhausted and overwhelmed...some days all I could utter was help us Jesus. I know that so many of you have lifted us up in our lowest and weakest times, and for that I am eternally grateful.
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