Getting better...

Went in today for his check up. His peg tube infection is much better. He is also a bit more energetic. His counts are finally on the upward climb, so we don't have to go in for another two weeks unless there is a problem. The only negative is his right eye is really red today. This is a fairly common occurrence for him, but it's a bit more irritated looking than usual. Hopefully, it resolves on its own.

I'll review his overall progress:

-He's still not walking on his own, but is getting better with his walker. I still support him a little when he uses the walker.
-His right eye tracks better than ever, but still doesn't track past mid line to the right. His eyelids still don't fully close at night.
-His right-sided weakness has improved immensely, but the left has taken over as the dominant side.
-Speaks really clearly now, but still can't close his lips all the way. Not much of a delay from thoughts to speech.
-Left side of jaw is clearly stronger than right but seeing improvement on the right.
-No smile yet, but still seeing a little more muscle movement on the left. Plus, he's learned to express a lot with his eyes.
-Coordination overall has much improved.

He is doing really awesome when he feels well. Much has improved, it's really uplifting. Even though the chemo can be tough on him, he always comes through and starts surprising us towards the end of the cycle.

Next chemo cycle starts on March 3rd. It is only a four week cycle. Then, his next MRI is scheduled for March 29th. Somewhere in between those he'll have another hearing test. The last one went well with only a little loss in the right ear.

Today was Brynn's birthday. We've already had cake, ice cream, and presents. We had a lot of fun!

Love to all!!

Yup, it's an infection and his...

Platelets were extremely low this morning (12,000). He got another transfusion today. He also got antibiotics prescribed for his g-tube infection. The gastro doc thought it probably developed from friction (creating a sore-like ulcer), then low white blood cell counts not being able to help it heal, etc. Regardless, Ethan seemed a little perkier this morning, even before the transfusion. He is much more sensitive at the site of the g-tube though. I'll have to clean it excessively and such but we're used to that around here. Hopefully, by his next check up on Thursday the little guy will be in much better shape.

Ah, we made it through the weekend. It was a sleepless one for me, but I feel much better now knowing he's getting the attention he needs. Turns out that even if I had wanted him to be transfused on Friday, he wouldn't have been in the clinic. They were closed due to the snow.

Now, time to relax a bit... Dino Dan is on the tube and I'm going to bury my nose in a book for a few.

Have a good week!

Knock on wood:

The next time I try to post about how normal things are - stop me, or at least knock on some wood. He has been crazy weak, has had a low grade fever, and bruising everywhere. I really should have taken him in Friday. I think another transfusion of platelets would have got him through the weekend successfully. He started puking and got a low-grade fever last night. He was also being really sensitive about his g-tube but said there was no pain. I called the doctor last night to report the fever and such, but he did not want me to admit him to the hospital unless his fever became problematic. Also, Ethan kept saying he was fine, although he clearly didn't want to go the hospital. The doctor thought it was best to wait till his Monday appointment. I'm sure keeping him out of the hospital is always the best option unless he is fairly acute. However, tonight I can see his g-tube is probably infected. It has suddenly become much more red and even a little swollen. No oozing yet, but I'm sure that's next... Anyway, we'll go in tomorrow morning and hopefully more platelets and some antibiotics will do the trick. I really hope he doesn't have to be admitted.

Totally stressful weekend, but it could always be worse. I'm thankful this is all I'm worrying about now. :) I'll post again tomorrow.

-Love to all

Feeling tired...

Ethan had to go in Wednesday for blood. That went smoothly, but it didn't perk him as much as usual. By Thursday night, I was contemplating taking him back into the clinic Friday morning. I know his platelets are low. His eyes were really blood shot and he had a few more bruises than usual but nothing significantly alarming, other than how utterly weak and tired he is. It is so hard to see him like this with all the progress he's made and with how much energy he had within his recovery period last round. Well, I decided not to take him in this morning since most of the roads were closed due to snow, I didn't want to put him through being poked three times in one week, his eyes looked a little better this am, and I was really hoping his body was taking a turn for the better on its own. We'll know by Monday when we go back in for his planned check up. I pray his platelets are on the climb.

It's been super cold in our house but the heater finally started working for us today. Anything below 40 outside and apparently the house can't get any warmer than 58! It's a lovely little, old home, but definitely not insulated well enough for the weather we've been having. There was an inch or two of snow on the ground at 4:30 am when I woke up to switch Ethan's fluids.

Ethan and Brynn have resumed their prior surgery playing... there was quite a stretch where they didn't. That gives me a little more time around the house. I was going on and on to my brother about cutting my hair, going back to school possibly at some point, and some other nonsense when he commented that it's really great that I can spend my time thinking about regular stuff now versus fretting about Ethan constantly. This is so true! It's great that, even though the cumulative effect of chemo sucks, he really has been doing well. He only has four more cycles and an end in sight is really helping. Things could possibly feel normal again - and we will be so grateful.

I'm not cutting my hair (Laura snapped me out of it) and Cole is probably wishing I would have acquired more girlfriends by now to ramble on to! However, "home" is feeling a little more normal and relaxed. Ryan, on the other hand, is still really absolved in his school. It requires ALL of his time. I feel really bad for him, but he is doing really well and he'll be starting a rotation (short internship) soon which will hopefully give him a short break from schoolwork.

That about sums up the current status. Looking forward to more visits from family and friends. Hope you all are warm and well.

Love, Nic