Not Your Father's Heroclix

For many years J has played a game called Heroclix. It is a combination of chess and Dungeons and Dragons, but with superheroes. It is incredibly complex. Each character has a point value and a variety of abilities which change as the character gets "hit." He has tried to explain it to me many times and after about three sentences, my eyes completely glaze over. He has played with different friends over the years but the prospects had kind of dried up as of late.

In steps Toe, and a new kind of Heroclix is born. 

I'm still not clear on the rules. I know they are simpler and mostly involve simple addition and subtraction to decide who wins an encounter. No more "dial clicks" as characters get "hit." And there are a few wrinkles as well. Cookie monster, a T-Rex, and a number of cars have joined the teams. I'm not clear on their "point values" or "abilities" but they seem fairly at home on the board.

And my husband is teaching my kid math. And they get to play Heroclix together. My husband who could quote chapter and verse of the Heroclix rulebook (literally. He carried it with him to work to read up) is up for a little invention of his own. And as Toe's abilities increase, it will begin to resemble the old game. Not that I'm in any rush. I think Cookie Monster has some mad super powers.

Merry Christmas

We have had a wonderful day. A relaxed atmosphere, games, and mad science thanks to J's brother. The boys made glow in the dark slime. They made geysers with soda and Mentos.  We all looked at salt crystals under the microscope. They have played three person PSP games. It is wonderful to have Uncle Awesome with us. It just feels like family. Our friends Jack and MLT stopped by for pie and conversation. The tree is lit and it is finally time for the boy to go to bed. For me, the day of family, food, and fun was excellent. I hope you all enjoyed it too.

Merry Christmas, all!

Letting Go

It is time to let go of the baby clothes and other baby items we have saved all of these years "just in case." We have a few friends with babies the right age and that stuff should not be sitting in my basement any more. So, late one night last week, I started going through boxes. And boxes. And boxes. I only made it through 2T but it is a start.

It was an amazing journey to a different age. Many of the clothes had that Dreft (laundry detergent for babies) smell that reminds me of new babies. Various outfits reminded me of an afternoon, an outing, a particular smile. I tried not to linger on anything and sorted like a maniac. I have talked to other mothers who only have one child and don't expect to have any more -- no,  I don't think we of only children are alone. Let me start again. I have talked to other mothers who have a hard time sending the old items away. There are many reasons "What if my kids need it?" (admittedly lots of the stuff my mom saved, we used. It was cute vintage stuff!) "What if I have another baby somewhere down the road?" For me, it was finally admitting that we were done, that I do not and will not need baby clothes again. Maybe that's it for all of us. The admission that it's over.

But it is. At least for me. I have a wonderful son who will need my full attention. He's not getting any smaller. And the pile in our basement was getting out of control. So I did it. Some went to friends. Some went to the consignment shop. I saved some of the special stuff. Not necessarily the best items, but the ones that were really associated with specific memories: the jumper T. wore on his first Halloween, the outfit he wore to be tested for CF (the one I meant to change him out of because it was so old, but comfortable, and we ran out of time and I spent the whole exam worrying what the tech who was giving the test would think. I know, crazy,  right?), various cool shirts from aunts and uncles... I was actually very proud about how little I saved.

That's it. That little box. My son's first two years.

Now I have to figure out about the baby blankets. That's a whole different thing. Most of them are homemade and I just can't bear to get rid of them yet.

But there's time. And plenty of other things to get rid of. Baby bathtubs. Carseats. A crib. There's a sense of panic that goes with it, that I am trying to ignore. Panic and a manic drive to get the stuff out of my house. Yep. I'm healthy.

Health Update

For those of you wondering about Toe's weight, we were very pleased at the last clinic visit. As of early March, Toe reached the 50th percentile and if we can maintain this height/weight ratio, there will be no more discussion of a G-tube. But we must maintain a high fat diet and lots of food...

Some people ask me if Toe is "ok" now. Yes and no. He is mostly healthy. Very healthy for a kid with cystic fibrosis. But he will have CF his entire life. Keeping Toe ok means a lot of maintenance.

We recently started a board to manage Toe's daily medicines. Once I wrote it all down, it didn't seem like that much. A friend of mine saw it and was a little appalled - she said it looked like a lot. I guess it's all in the perspective.

This is what we do to keep this four year old healthy:
Every day he gets:
Oral Meds:
Vitamins
CF specific vitamins (high doses of the ones that are difficult to absorb)
Two doses of antacid medicine (Prevacid) per day (must be taken 30 minutes before meals)
Three capsules of Enzymes EVERY Meal

Inhaled Meds:
Albuterol (before inhaled meds or clapping)
Pulmozyme 1ce a day
Hypertonic Saline 2ce a day

Percussive Therapy (also called "clapping" - we call it "Patapon" or "Whack-a-Toe") 2ce a day

An inhaled med plus percussive therapy can take anywhere from 40 minutes to an hour and a half. Right now he is doing 2 treatments (1 saline then pulmozyme, the other just saline).

That is the minimum he will probably ever have have.

If he gets a flare up of the existing bacteria in his lungs, he goes on oral antibiotics (as opposed to inhaled antibiotics or IV antibiotics, which will come later in his life) and we increase the number of breathing treatments during the time his cough is worse (Example, he has just been on a course of 2 weeks of antibiotics administered 3 times a day and 3 breathing treatments per day).

Also, obsessive hand washing and complete avoidance of people who are sick. And clinic visits every three months for a sputum culture and general asssessment.

CF is progressive, so as Toe gets older, we just keep adding treatments and meds to the existing framework. Up next: a PEP breathing apparatus. He's playing with it now and will use it in earnest when he gets a little older.

The good news is that there are more medicines on the market now than ever before to help manage CF and they are working on developing some that address CF at the gene level. The gene therapy is probably at least 10 years away for Toe's mutation and when it comes, it will not correct any damage already done to his body, so he will still have to take many of the meds. But, it is still SUCH an improvement even from 10 years ago. EVERY DAY we are grateful for these medications and the medical support we receive from the CF clinic at OHSU.

I think the hardest thing is that the treatments just take a lot of time.

Ok, and it's hard watching Toe when he is sick. We had the flu the last two weeks and he was really sick. We couldn't give him cough supressants or nasal decongestants because that would dry out his already thick mucus, making his mucus even more sticky, gummy, and sure to hold bad bacteria. So we just had to do more breathing treatments (which thin the mucus in his lungs) and use a ton of tissues and encourage him to cough. And cough. And cough.

This guy is a fighter. He works so hard to be healthy and is so positive. He hates having this disease. He hates doing the treatments. But so far, he has been incredibly compliant and does what needs to be done because he knows he has to.

And we are so lucky to have him EVERY SINGLE DAY. And in so many ways, he is such a normal four year old. He has lots of energy. He has good days and bad. He loves to laugh and play and has a wicked sense of humor. He is beginning to understand complex issues at an astounding rate.We are so used to Toe's routine that to us, he IS perfectly normal.