Saturday, August 21, 2010

Family News

Other than Jack's news, our big thing is that we've decided to build a house. The company owns a lot right next to the garden center. They didn't want someone else living there and being bothered by the garden center noise and view. (Instead the nearest neighbor is looking at a dirt lot.) So, we are going to buy it from the company and build a one-story house. Planning for all possibilities, it will be handicap accessible and give one child enough room to live at home indefinitely. You never know which child that might be! We are really keen to have an office space, so I can stay organized. Nick specified that it needs to be large enough to include a closet, a proper door and be near to the second bathroom, in case of a third child. I was pretty surprised to hear him say that! You know we've always been convinced that two kids is more manageable (to say convenient seems over-stating it) than three. So either Nick is being morbidly realistic or he's thinking a third would be fun, now that we're experts in the field! I guess I can forget about getting my 25 year old body back. Chocolate, anyone? What a tangent...back to the house's a pie shaped lot on a curve in the road, about 7400 sqft. We'll do a detached garage. I'm getting a proper hood in the kitchen, and a huge laundry/pantry. Those are my main points. Planning ahead for a laundry line outside, near the laundry room which will have it's own door to the outside near the garage. A breezeway will connect the house to the garage, for carrying groceries, walking in on rainy days, and clean shoes and just not tracking in grass all the time. So there will be some functional features that aren't in the typical builder-designed, economical, bachelor-architect house. Think how great houses could be if there were more mom architects. Well, here's my chance! I never thought this would be an opportunity we'd have at this stage and it seems a little crazy to pile on, but by the time it's done, Jack will hopefully be walking and the stairs just don't make sense. Plus there are areas of our house that we use (read: I have to clean them) and yet are unnecessary at the same time. The idea is to streamline my housework. Please comment with any features you've longed for that I may not have thought of. Overall we are looking to build about 2000-2300 sqft, not including the garage of course, which will be huge.

Nick's brother Chris and Chris's wife Mel and their two kids (7yrs and 6mos) just got back last week from Canada. They were deported for 14 weeks, the whole time in a small RV, not knowing if they would get back in or forever be banished. That left the garden center without its manager, Taylor out of school, and the parents extremely stressed about what they would do if they had to start over. We are glad to have them back. Emma missed Taylor tremendously and the company suffered of course. But mostly, the brothers are such a unit; it would have been too sad to lose one. Isabel, their baby girl, is the cutest thing you ever saw. Always smiling and a fine example for Jack to aspire to. (Yes, I was sad to see in the flesh what a six month old is supposed to be doing. I long to give Jack a different start in life. But we may see him catch up and be playing with his cousin in no time.) We had a big party in the back circle for family and friends when they drove up. Les and Chris had planned their arrival for maximum drama!

Les and Doris are RVing in Taos for a few days celebrating their 40th anniversary. On Sunday we surprised them by showing up at 7:30 Mass (kids and all!). I tipped off the priest and he gave them a "shout-out" when they brought up the gifts, which he had pre-arranged. After Mass he gave them a special blessing. Then we all went to brunch at a nice restaurant. It was a lovely day.

On Monday, Sarah Elliott came down from Phoenix to help me with the kids a bit. It's been a wonderful week. She really bonded with Jack and held him lots. Was a big help to me. Just sat and caught up a lot too. Last night I took her to Shall We Dance, where I used to work. They had the usual Friday night party, Erin and AJ were there. I had not been back to a party for at least 2 years and it was so terrific to dance again. Sarah got asked to dance a lot and seemed to have a good time learning. She said she and Jason are definitely going to give it a whirl when they get settled in. Two new converts to ballroom! I'm trying to convince Sarah that they need to move down here for Jason's mech. engineering degree, as UofA beats ASU in at least that department. I think wherever they find good jobs, they will get married, buy a house, and have kids by the time Jason graduates, so I'm lobbying for that place to be Tucson. Then there will be two of my family in one town. That's critical mass, enough to draw others of the family. Thirty years from now we'll be saying, "We were the first of the Liuzzas to settle Tucson back in the '10s when thar was nothin' but the university and ranchers." :) Besides, Jason would really liven Nick up. And teach him welding, you can see I've got it all figured out.

The lastest with Emma is that she is a reliable potty user, day and night. We are so glad! The down side, of course, is that in her "big girl bed" she gets up in the morning and from nap earlier than she used to. But that's just growing up I guess. It took a while to get her to stay in bed once she was tucked in, but she's really good about it now and only gets up to use the potty. That "Go Back To Bed!!" phase was every bit as annoying as we thought it would be. She seems to have the hang of it now. She can count to ten and almost sing the alphabet song. So, she's pretty much a genius. I don't know what's normal for her age, actually, she may be merely brilliant. She loves to play with her train set and a paper Maisy doll house. She is a very good thrower and kicker. Most important, she has beautiful manners. Lots of please, thank you very much, no thank you, excuse me, and the like. Of course she can also throw a wicked fit, but it doesn't last long because I refuse to witness it. She has to go to her "happy chair" until she can be happy. So, we are very proud of Emma, dancing queen. I just heard her saying, "Yum, delicious!"

I think I should go down and help out a bit, but I hope this gets you all caught up on our lives! Much love to you for reading.

Steroid Jack

This is Jack 5 weeks into the steroid treatment. He happened to be licking his lips at the moment the picture was taken; his tongue isn't hanging out normally, in case you were worried about that. I hesitated to even post a picture of "Fat Jack", but if someone googles infantile spasms like we did every night, they might come across this blog. It helped us to know what to expect. He was about 14# when we started and he is 19.5# now. In this picture, you can see the old Jack around the eyes. There just haven't been many of those moments it seems. More and more though we are seeing some calm and happy moments.

Guiness Poster Child

Emma does a funny thing at night: she wants to dance around in my shirt. This is technically Nick's shirt but I wear his t-shirts around the house sometimes. It was definitely a Kodak moment. She's in mid-jump in this picture.

Thursday, August 19, 2010

Jack's News

Not much time and energy, but I feel remiss in not updating for so long. I know all our lives are fascinating, but you mostly want to know the latest with Jack. One week left of a very diminished dose of the ACTH (steroids). No spasms have returned! We are extremely pleased that it is working. Before the spasms, he was regressing day by day to the newborn state. He was, and is, on the phenobarbital and Keppra for generalized seizures, which together gave us a seemingly lazy, but easy kid. The steroids did for Jack what it does for pro baseballers. It made him irritable, angry, uncomfortable, hungry, and very, very fat. As we started to wean him off the steroids, he got really uncomfortable. His face has broken out and is itching him; he has heat rashes from being so warm due to the higher metabolism. Now as we are just rounding the corner to the lowest dose, he seems to sleep more soundly and spend more time awake but calm. Also cooing sometimes. He is learning how to be spoon fed. The ability to learn is something we take for granted, but seeing him recognize me and coo, or remember how to eat, is priceless.
Next step, we await the results of a DNA panel that will tell us if it is a chromosomal abnormality. We will also get a new EEG to make sure the infantile spams are gone for good. At the same time, another BAER test, to see if we get a normal result this time, unlike last time.
I'll write again soon about the rest of us, but that's Jack's new good stuff!