Super Keith

It's been a busy day for our Superhero. He's seen more therapists and specialists than I've seen in a lifetime.

First, he had to have an audiogram that they can use as a baseline before he starts chemotherapy. Apparently, hearing loss is one of the first side-effects of treatment. Keith was not super happy about it but they got mostly what they needed. They will get the rest after his next surgery. Everyone makes a real effort to make things fun, but Keith has their number. He knows they are really after performance on his part and sometimes he just doesn't want to play. I don't blame him one bit.

We also spent quite a bit of time with the occupational therapist, the physical therapist and the speech pathologist. The O.T. and P.T. were blown away by Keith's progress from yesterday. I was fighting back tears while cheering him on during therapy yesterday as I watched him struggle to do simple tasks. The frustration on his face said it all. On our way back to his room, I quietly asked the O.T. how long it usually takes kids to walk again after a surgery like Keith's and she wouldn't give me a straight answer. Finally, I said, "like a month?" All she replied was, "Or longer." Wow. Well, at least I got an answer out of her.

But after today, I'm confident we can get him walking before that, assuming the next surgery goes well. He was standing a little on his own and took a few steps with some help. He was also standing at a play-table and holding his weight with one arm while playing with the other. I was spotting him, but that was it. He wanted to keep playing but his head was hurting and we had to get him back for some more Tylenol.

I was so proud of him. I feel much more encouraged today about how things will go after surgery next week. At least I have a better idea of what to expect. The O.T. said today that if he does this well next week, he won't even need in-patient rehab which would be fantastic. Then we could get him home sooner.

The one drawback to his progress is his nutrition. Anyone who knows Keith knows that he doesn't have much of an appetite. (He didn't inherit that from us!) We've been working with the nutritionist the past few days but his caloric intake is about 1/3 what it needs to be. He'd have to eat a lot more cheetos and popcicles to reach 1100 calories! So, the nurse is going to put a feeding tube in him tonight. He will have it until he goes in for surgery again. Basically it's a tube that goes through his nose and into his stomach. During the night we'll hook him up to a machine that will feed him formula. They tape the tube on his cheek to keep it out of his way. Keith is no stranger to a feeding tube. He had one for a few weeks in the NICU, too. Even at 3 pounds he was pulling that tube out of his nose so we'll see how this goes. We'll continue to encourage him to eat real food during the day. Supposedly, it's fairly common for oncology patients his age to have a feeding tube.

We do have some excellent news to share. The oncologist has decided to send Keith home tomorrow! Even though it is only for a few days, we are very excited. We feel Keith will perk up if he is able to be at home with Cole and Ally. He will especially appreciate a break from all the poking and touching from complete strangers. Our biggest concern is how we are going to get him back to the hospital for surgery next Wednesday. I can't think of a bribe big enough! He hates this place. Today he kept hiding behind his pillows whenever anyone walked through his door. Now that his strength is starting to come back, we could have a pretty big fight on our hands next week. I'm okay with that though. I love to see him show his personality again and see him have the strength, energy and coordination to fight.

So, we're looking forward to some family time at home before his next big surgery. (A polite translation: no visitors please.) Keith needs to regain some strength and we are desperate for some family time together at home.

We are more than grateful for the cards, letters, balloons, activities and posters that have been sent for Keith that are currently decorating his hospital room. We can't wait to redecorate them on his walls at home! (even if it's just for a few days). It's my turn at home tonight and my head is spinning with ideas to welcome Keith home. Yay for good days.