I am far behind! Ian had his appointment on Monday. He had three appointments that day so we were there pretty much all day long. Ian was totally brave as he got his chemo and we were in and out pretty quickly with that part of it. Basically, the routine will be the same for the next 2 years. One appointment with a big dose of chemo a month and oral chemo every day. We are almost a third of the way there. It seems far but it is better than a fourth of the way.
After that, we had about an hour to kill before we had to go up to Radiology. There is a little park right outside the hospital so we had some lunch and then went out to play. Fortunately it was somewhat warm so we could enjoy it more than we would have in the freezing cold. It cracks me up to see how different he has become these past few months. He is still a huge mama's boy but he is much more outgoing. About 6 months ago I took him to a birthday party and it took him about 20 minutes before he would even pick his head up out of my shoulder to look at anyone. I know a lot of it was from everything he'd been through with hospitalizations and being quarantined from the world but still, he seemed like a completely different kid. He was the complete opposite, talking to the kids right away and becoming instant friends with them.
We went up to Radiology to have a follow up ultrasound on his kidney. He was born with a kink in his ureter and it causes his kidney to be enlarged. He has had so many ultrasounds done now that he actually was asking me, "When are they going to call me in?" He wasn't nervous at all. In fact, he kind of likes that they are rubbing it on his back; it's like a free massage. We had to wait nearly an hour and a half so it dragged on but we finished just in time for our next appointment so it worked out.
After the ultrasound, we headed up to see the urologist to get his results. The last time we were there a few months ago, his kidney had enlarged nearly 3 times so they were pretty worried about it and wanting to see if it had improved at all. The doctor came in and said, "He has the weirdest kidney I have ever seen." My heart just dropped and I waited to hear what was next. He then continued, "It looks completely normal. Not only has the swelling gone down, you would never even know that he has had problems with hydronephrosis. Come back in 6 months. I want to follow it still." I was so relieved when he said that! I hope it continues on this way.
Friday, February 27, 2009
Thursday, February 12, 2009
My Altered Ego
Have you ever wondered how long it takes for your children to get over your absence? Well, I found out this past weekend and the results were pretty depressing.
I went to California to spend a few days with my mom. I was sad to leave the kids but excited to see her and my family. It was the first time I have ever been home alone without the kids in over 10 years. The night before, Ian was crying hysterically telling me, "I am going to miss you so much" over and over again. It was about enough to make me stay home. I didn't know how he was going to survive without me there.
The morning of the flight, we woke up the kids and all loaded into the car. Everyone was happy and cheerful as we drove to the airport. About 10 minutes before we got there, Ian made a comment about him seeing Dr. Max. He had thought because we woke up early that we were on our way to the hospital and he was totally being a stud about it. No complaints, no tears. I told him we weren't going to the Doctor, we were going to the airport. His little face about broke my heart and he held in the tears until we got there. He lost it once I took my bags out of the car. I hugged him and the girls goodbye (Mike too) and walked inside feeling really guilty. I just knew he was going to be in the depths of despair all weekend long. Well, I called Mike a few minutes later to see how he was doing, fully expecting him to still be crying and upset. I was told it only took him 2 minutes to forget all about it and start fighting with Emma. TWO minutes, that's all. What was I worried for?
I did call home that night and he wouldn't talk to me because he was mad at me so I guess I can tack a few more minutes on for that. He talked to me the other times I called though so it wouldn't be too many more minutes.
He also informed me today that I don't look like Barbie. Right out of the blue he said, "Barbie is pretty. Mom, you don't look like Barbie at all." Good to know. So much for that dream-LOL. Kids sure know how to make you feel loved don't they?
I went to California to spend a few days with my mom. I was sad to leave the kids but excited to see her and my family. It was the first time I have ever been home alone without the kids in over 10 years. The night before, Ian was crying hysterically telling me, "I am going to miss you so much" over and over again. It was about enough to make me stay home. I didn't know how he was going to survive without me there.
The morning of the flight, we woke up the kids and all loaded into the car. Everyone was happy and cheerful as we drove to the airport. About 10 minutes before we got there, Ian made a comment about him seeing Dr. Max. He had thought because we woke up early that we were on our way to the hospital and he was totally being a stud about it. No complaints, no tears. I told him we weren't going to the Doctor, we were going to the airport. His little face about broke my heart and he held in the tears until we got there. He lost it once I took my bags out of the car. I hugged him and the girls goodbye (Mike too) and walked inside feeling really guilty. I just knew he was going to be in the depths of despair all weekend long. Well, I called Mike a few minutes later to see how he was doing, fully expecting him to still be crying and upset. I was told it only took him 2 minutes to forget all about it and start fighting with Emma. TWO minutes, that's all. What was I worried for?
I did call home that night and he wouldn't talk to me because he was mad at me so I guess I can tack a few more minutes on for that. He talked to me the other times I called though so it wouldn't be too many more minutes.
He also informed me today that I don't look like Barbie. Right out of the blue he said, "Barbie is pretty. Mom, you don't look like Barbie at all." Good to know. So much for that dream-LOL. Kids sure know how to make you feel loved don't they?
Friday, February 6, 2009
Fourth Graders in Cali
I went to the mailbox the other day and imagine my surprise to find a big manilla envelope with Ian's name on it. It was from a fourth grade class in California (their teacher is friends with my mom). They had all made Ian the most adorable handmade cards and they have all been recycling as a class for him. I was amazed to find a check for hundreds of dollars from the cans and plastic bottles they've kept. (Anyone know of a recyling place in KS?) The other really interesting part of the story is it was for an odd amount and it was the same exact amount to the penny of a bill that we paid the day before. It was a reminder to me that we are indeed being looked over and blessed; by friends, by family, by strangers, by God. I am so grateful and touched by everyone's continual thoughtfulness on Ian's account.
Sunday, February 1, 2009
Bilingual
Ian's nurse practioner at the Hemoc clinic said that one of the things they recommend is to get an early education evaluation scheduled. This evaluation covers things like hearing, eyesight, motor skills, social skills, and speech. They recommend this test to everyone since sometimes the chemo can slow down their motor skills and such.
Ian went in about two ago to have this done. He was super nervous and I kept promising him he was seeing a teacher not a doctor so there would be no shots. I didn't know how things were going to be and I assumed it would just be the two of us with the evaluator so when he asked me to stay with him I told him I would.
We showed up and there were about 20 other kids there in a room at different stations with evaluators coming up to them for the various tests. They wouldn't let me go in and my heart sunk after I had just promised him I'd stay with him. He was upset, but tough, and let the evaluator take him by the hand and lead him in the room. Ian was tested for about an hour and then they brought him out to me. He did really well on everything except for the speech portion so they wanted to do further tests.
We went on Thursday to meet one-on-one with the speech therapist. She began to test him and said he was doing much better than the week before. I guess he was so nervous that he was mumbling or not answering her at all so she needed to see if it was due to nerves, or not knowing the answer. There came a part where she put out some objects and asked him to count them. Ian immediately began to count them in Spanish. It completely took both of us by surprise and I couldn't help but laugh. Once again, the love of Diego and Dora the Explorer come shining through.
Ian went in about two ago to have this done. He was super nervous and I kept promising him he was seeing a teacher not a doctor so there would be no shots. I didn't know how things were going to be and I assumed it would just be the two of us with the evaluator so when he asked me to stay with him I told him I would.
We showed up and there were about 20 other kids there in a room at different stations with evaluators coming up to them for the various tests. They wouldn't let me go in and my heart sunk after I had just promised him I'd stay with him. He was upset, but tough, and let the evaluator take him by the hand and lead him in the room. Ian was tested for about an hour and then they brought him out to me. He did really well on everything except for the speech portion so they wanted to do further tests.
We went on Thursday to meet one-on-one with the speech therapist. She began to test him and said he was doing much better than the week before. I guess he was so nervous that he was mumbling or not answering her at all so she needed to see if it was due to nerves, or not knowing the answer. There came a part where she put out some objects and asked him to count them. Ian immediately began to count them in Spanish. It completely took both of us by surprise and I couldn't help but laugh. Once again, the love of Diego and Dora the Explorer come shining through.
Tuesday, January 20, 2009
Today's Appointment
Ian had an appointment bright and early this morning. In the past, he has woken up in a horrible mood especially once he knows where we are going so I expected it to be the same. I went in to wake him up and he said with a groggy smile, "Is it to see Dr. Max? Ok." He got ready without any complaints and was in a great mood on the drive up. There were a few snow flurries and he said, "It's snowing! That makes me so happy!" (We definitely do not share the same opinion on that one).
We got to the hospital and I was dreading it. I knew the tears and the looks for me to not let the Doctors poke him had to be coming. The nurse came in to access his port and he held his shirt up and barely cried at all. He had to have a LP done today (chemo put in the spine) and he usually gets really weird and weepy on the meds they use to knock him out. Today there were no tears. He just laid on his side, nearly asleep holding my hand and watching tv. When the meds wore off, he was happy and all he cared about was when his breakfast was going to be there (he has to be fasting to have the procedure done).
Ian's immune counts actually came in really high which isn't a bad thing but we may need to increase his daily chemo levels a little more. Everything thing else looks great. We get to go through another 5 day pulse of the steroids so we are in for a week!
He did the best with this appointment that I have ever seen him do. I had nothing to dread after all.
We got to the hospital and I was dreading it. I knew the tears and the looks for me to not let the Doctors poke him had to be coming. The nurse came in to access his port and he held his shirt up and barely cried at all. He had to have a LP done today (chemo put in the spine) and he usually gets really weird and weepy on the meds they use to knock him out. Today there were no tears. He just laid on his side, nearly asleep holding my hand and watching tv. When the meds wore off, he was happy and all he cared about was when his breakfast was going to be there (he has to be fasting to have the procedure done).
Ian's immune counts actually came in really high which isn't a bad thing but we may need to increase his daily chemo levels a little more. Everything thing else looks great. We get to go through another 5 day pulse of the steroids so we are in for a week!
He did the best with this appointment that I have ever seen him do. I had nothing to dread after all.
Monday, January 12, 2009
Ian's New Show
I have desperately been trying to get Ian to enjoy something besides Dora the Explorer or Diego. I start to crawl out my skin from the second I hear the theme song all the way through her talk yelling through the episode. Don't get me wrong, I know it teaches some; it is cute to hear him walk around counting in Spanish or saying "Sube or vuele" (which I finally figured out the meaning to). I seriously can't handle the chick that does the voice for her though.
I don't let Ian sit around and watch t.v. endlessly either, but since we do play a good part of the day, I let him watch and entertain himself while I take a break from playing and get a few jobs done.
For all of you moms who know what I am talking about (I know there are plenty of you out there) I recently stumbled upon a solution by accident. I was flipping through the channels and came to Discovery Kids where they were airing "Trading Spaces." It is the same as the other show, but it is all for kids and they do amazing stuff just in kids rooms. He was completely sucked in and instantly loved it. Now, that is a show I can deal with having on in the background! Who knows, my kids might get lucky and get a cooler room out of it if I am feeling inspired. Ian has already decided that his green room painted fresh about 6 months ago, is out and he needs an orange room now. Not going to happen. He'll change his mind after the next episode I am sure. Who knew? My little designer.
I don't let Ian sit around and watch t.v. endlessly either, but since we do play a good part of the day, I let him watch and entertain himself while I take a break from playing and get a few jobs done.
For all of you moms who know what I am talking about (I know there are plenty of you out there) I recently stumbled upon a solution by accident. I was flipping through the channels and came to Discovery Kids where they were airing "Trading Spaces." It is the same as the other show, but it is all for kids and they do amazing stuff just in kids rooms. He was completely sucked in and instantly loved it. Now, that is a show I can deal with having on in the background! Who knows, my kids might get lucky and get a cooler room out of it if I am feeling inspired. Ian has already decided that his green room painted fresh about 6 months ago, is out and he needs an orange room now. Not going to happen. He'll change his mind after the next episode I am sure. Who knew? My little designer.
Thursday, January 8, 2009
The Sweetest Letter to Santa Ever
Ian got a letter in the mail today from his Nana. She sent him a copy of a letter that his 7-year old cousin Reese wrote to Santa. I was so touched at the sincerety and sweetness of it. Here is what it said:
Dear Santa,
Ian has to have 3 shots per day so I am wondering if you can send him a T.V. too. If your elf can than that would be good. He doesn't have to. If yes, wrap it with your fun bow and paper.
Love,
Reese
P.S. I love Christmas
Dear Santa,
Ian has to have 3 shots per day so I am wondering if you can send him a T.V. too. If your elf can than that would be good. He doesn't have to. If yes, wrap it with your fun bow and paper.
Love,
Reese
P.S. I love Christmas
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