Sunday, June 13, 2010

The Rest of Us

As for the rest of the family, we are fine. I am on week four of a nine-week running program called "Couch to 5K", meaning that it takes a couch potato and teaches her to run 5K. It's very well planned with intervals of running and walking and there is a podcast it all timed out to good music. Right now I can run 5 minutes straight, which is a lot longer than I could before! When the ballet studio gets going again in July I will start Zumba too - mostly as a reward for slogging through the running. For those of you who haven't heard of it, Zumba is a latin dance exercise class. Really works the core muscles and legs and the music gets someone like me going! Exercising 3 times a week has been good for my mental well-being, too. We've been pretty cooped up and going for a walk with the kids in a stroller is not the same thing as getting my heart-rate up for 30 minutes. Plus, I can think - or not think and just look at the scenery.

Father's Day is next week on Sunday the 20th and Les will turn 70 on July 24th. That's a big one! I'll host a little brunch over here on Sunday for the dads. I'm planning smoked salmon, bagels and lox, quiche, spinach salad. I have been craving smoked salmon ever since the brunch after Erin's wedding. Doris has booked the Tanque Verde Guest Ranch for 14 people the following Sunday for Les's birthday party. It's a fun, kinda campy atmosphere. Emma will enjoy seeing the horses. Chris and Mel and Taylor are still in Canada so it won't be quite so festive for Les (or so awkward for the rest of us).

Speaking of Erin's wedding, they should be back from the honeymoon (Caribbean cruise - O, happy cliche!) It was a really special ceremony, focusing on how geekiness will keep them together. ;) Erin and AJ did a great job planning the whole weekend, and we loved every bit.

This week we'll paint (and by we, I mean someone paid by the company) the curvy wall in our backyard and the wall by the gate a striking accent color called Yam. Nick picked it out is all I can say, but I am very excited about it. I don't think I have the guts to go that bold. If it's bad, hey, it's only paint. If it's good, it will be Nick's first decorating decision as a homeowner! We cleaned out the area that had been full of junk and cut down the bottlebrush (it wasn't doing great and we love to rip out plants!) Nick has decided (give him an inch...) that we should put a sandbox back there for Emma and Jack. I see monkey bars in the future and a hideout. So, it'll be a play area. As if the rest of the yard isn't?! Now, I'm all for fun, but sand is a nuisance. It's going to get really gross quick with the melted popsicles, etc. And it'll be all over her and in her clothes, and therefore all over the house. And she'll just want to transport it via bucket and shovel to the grass or pool or table. I know my kid, and a sandbox is a bad idea. But that's all I'll say on the matter!

On the subject of the yard, I'm really proud of my Tasha Tudor -style front yard. The perrenials are all filled in and beautiful and I just planted angelonias, zinnias, pentas and hollyhock. It looks like somewhere else and I can see it from my kitchen window all cheerful out there! New favorite for low water color is gomphrena. Look it up! In the backyard, the grass has mostly recovered and we are getting awesome zucchini, tomatoes, peppers and green beans. It's a feast every night, and soon the butternut squash will be ready too! Our fruit trees are in their second year and the apricots were wonderful, although not nearly enough of them. Looks like the plums will be next. And the ground cover back there is finally coming in, teucrium and veronica, and something I can't remember. Nick just likes to experiment with stuff so he can see how it grows.

What all is Emma doing? She is swinging on the trapeze bar like a little monkey. Saying really cute things like, "Caillou now pease?" She can go up and down the stairs without assistance (though we don't trust her to do it alone yet). She likes to vroom her little hot wheels around and carries a naked plastic baby everywhere. That's gender-balanced, don't you think? Her favorite book is "Green Eggs and Ham" and she can practically recite "I Like Me", a simple book about a pig (and pig's healthy self-esteem). Oh yeah! I almost forgot! She is potty-trained when she is awake! Still doing pull-ups at night and naps, but it is wonderful to be able to trust that she'll go on her own. Hasn't had an accident in weeks! What else? If she wants you to go away, she diplomatically and cheerfully says, "Bye! See ya later!" She kisses on Jack and calls him silly and replaces his paci if she thinks he needs it. Yesterday, she got her own snack out of the cupboard and put it in a ziploc baggie. Pretty grown up I think!

Now it is time to make a little lunch. So I hope this gets you all caught up. I'll try to write after Jack's Dr visit tomorrow.
Much much love to you,

Sunday, June 6, 2010

Ahh, Life...

Amazing that so much time has passed since my last post. So let me get you caught up, although most of you are connected to the Liuzza prayer hotline, so you know! At Jack's 2 month appointment, we found out that he really had not gained much weight and was slipping off the chart at 1% for weight and head circumference. Suddenly I realized that I needed to slow down and put Jack's needs ahead of Emma's for a while. I just wasn't finding the time to nurse for long periods and he wasn't demanding any more; he seemed content. Now he eats a lot more, we stay at home a lot more and he's catching up quickly at 12lbs 7oz today. His head circumference was worrisome, but the Dr. felt it would start growing when the body had more fat calories to spare. On May 13, Jack had a series of seizures and went into the hospital. A CT scan showed, and an MRI confirmed, agenesis of the corpus collosum (ACC). Basically, the corpus collosum is a bunch of neural pathways that communicate between the right and left hemispheres of the brain. So, agenesis means that it didn't grow. And that should have happened in the first trimester of pregnancy. In Jack's case it grew partially. It isn't something that will fix itself or grow later, nor will it worsen. The best thing we can do is to force the brain to find new ways around the problem. Somewhere along the line we may find delays in development in any area and need to treat that with therapy (physical, emotional, speech, etc). There is a very broad spectrum of outcomes for people with this problem and many people may not have been diagnosed and function fine in life. The immediate problem is that for Jack it's bringing on a lot of seizures. We had him on Keppra and that seemed to be controlling them for a couple of weeks. Then I guess he outgrew his dose. The Dr. kept upping the dose, but finally suggested bringing him into the ER to get a "loading dose" (a lot at once) of phenobarbital on Thursday. Didn't stop the seizures until Sat afternoon. In the meantime, Dr. Fike ordered another EEG, MRI and a spinal tap. EEG showed a lot of seizure activity near the center of the brain, MRI showed the same as on 5/14, and the spinal was totally clean. She really wanted to rule everything out that might require other treatment, and now that we have, we are left with what most people with epilepsy have, no concrete explanation. I'm thankful that he's mostly healthy. The hardest part is just living under this vague threat that he might not grow out of the seizures and that he may have developmental problems ranging from the maximum to the minimum. But that part is true of all children, isn't it?

Being in the hospital reminded me that many many children have worse problems than Jack. It is very sad to see children on the Peds unit. I can't imagine what their parents are going through. We had a shared room this time and I lucked out with a "roomie" who became a good friend. Her daughter, Emma, turns one this weekend. A simple staph infection, MRSA (so-called and feared because it is resistant to most antibiotics), settled in adenoid glands in her neck. The glands became swollen and had to be cut and drained. She got this infection from a scrape on the knee. It's a scary world when bacteria have out-evolved antibiotics, and that's where we are. Emma had a mal-rotated lower intestine when she was born and has had two emergency surguries already. I met Harmony's husband, who stays home with Emma and their 4-year old, Alexis (nickname: Lucky). He used to be a mover and has a bad back. Mom Harmony is a marketer for an apparel retailer that's HQed in town. She wants to go to med school and become a surgeon. Really nice people to sit up late and talk to while the constant parade of nurses comes and goes.

Emma's up, gotta go. Will post this now and continue soon.