Friday, March 27, 2009
Lukey has a little cold right now, but he is doing really well otherwise. I think Levi is suffering from Spring fever. He is bouncing off the walls and making my head spin. He desperately needs some outdoor activity to be in everyday...like cross country running!!! I had another OB appt last week. The boys are growing well, which is obvious by the size of my belly, and their heartbeats sound good and strong. I have another US next week to get their measurements. My cervix is holding up nicely, just in case you wanted to know. I have entered into the Hot dog and bologna phase of my pregnancy. See I don't go by weeks..I go by cravings...they are always the same. Indian food followed by peanut butter and jelly sandwiches followed by hot dogs and then on to bologna sandwiches. The new one I've been having lately is Hostess cherry pie, which I hadn't had for at least 10-15 years. Weird..and totally not healthy. I also eat a lot of raw veggies, but I do love a hot dog for lunch :) I have spent waaaay too much time talking about food. I feel the urgency to get things in order now...I am also in the nesting phase. Why is this so complicated?
Now I need to take Levi outside to run around and burn some energy. I will keep this updated about the PET scan results as soon as we receive them. We are only expecting good reports!!!
Thursday, March 19, 2009
Here's a Praise Report! He had his hearing tests on Tuesday. He had to be sedated so they could get a real accurate reading. The Audiologist who has been doing them since day 1 was a little perplexed. She told us "well I can't give you an explanation, but his hearing is better now than it was before." Before they told us he had lost all his high frequency hearing. Now there is just a very mild loss in the highest frequency. God is so good and so faithful.
I had an ECHO done on the twins yesterday. They wanted to check their hearts because of the things I was exposed to before I knew I was pregnant. Everything looks just fine. They are moving around A LOT! Sometimes they take my breath away when they both get to going in there. Tasks are definitely getting more difficult...and my legs are starting to look like a Rand McNally map. Oh the joys of pregnancy. Ben has ordered a multitude of books about having multiples and raising twins and raising all boys...now all I need is time to read them :0)
Last night we took Levi to the circus at the Verizon Center in D.C. We were given the tickets by Special Love, which is an organization that does camps and things for pediatric cancer patients and their siblings. It was a great night. We got there for the pre-show at 6...which was a little loud and busy for me...I was starting to feel confused..so I had to step out of the arena and away. For the kids it was awesome...they got to be down on the floor with the clowns and performers and everything. It was a show like I have never seen before. I remember going to the circus as a kid and it was in an actual tent. There were clowns and a few animals and performers, but this was like a Vegas show for kids. Originally we were going to take Lukey, but it's a good thing we did not. We left home at 4 in the afternoon and returned at 11 at night. He would not have liked it, so Levi was able to take his little friend Zoey (who he always calls Zoby). They were so cute...they had a good time, but were extremely tired towards the end. I think we all ate too many hot dogs and pop corn...well at least I did.
Zoey and Levi
Ben wearing his favorite hat
Levi was not so thrilled to be trying on costumes.
Down on the arena floor watching some acts.
Levi and his sword.
It was really great to be able to take Levi out where he feels like he's special. He loves his baby brother, but feels jealous sometimes that Lukey gets so much attention. He really enjoyed being out with mommy and daddy. Even though it was past my bedtime and my feet were starting to swell inside my shoes, it was fun. We are so thankful to have no appts until Monday. A nice break. I asked his oncologist when he can get his central line out and she said if his scans all come back clear and his AFP goes down and stays down then he will get it out. He just had another AFP drawn on Tuesday..please pray with us that the results are low..under 10. I'll let you all know how his CT scan goes. Thanks for sticking by us and holding our family up in prayer. Hope everyone has a blessed weekend!
Thursday, March 5, 2009
Uncle Michael and Levi
Uncle Michael and his buddies
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 rest..so I better chill a bit.
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 hrs..it 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.
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