Sunday, October 16, 2011

Remodel Update

I don't know how to move these around to the right order. But here's Nick taking apart the pony wall between the kitchen and living room. Don't worry, the electrical to that area is off! It's all steel framing so a little different to demo. Basically, he's taking the screws out and dismantling it. More tedious, less dramatic photo opportunity.

Here is the gutted bathroom. All that's left is the wall at the back. It's full of loose fiberglass insulation, so we're going to tackle that another day. The metal wall midway will come down as soon as we are confident it isn't structural! And the large opening leads to Emma's room . It had a pocket door, but will be closed up.


This is what it looked like before. Very cramped. Too many walls. We're confident it will feel downright spacious in this 6'8" x 11'6" room.

This is the house without tile or baseboards. A very painstaking process that was mostly accomplished by Nick and a couple of guys from the farm. There is still a little thin set to get up. It's a very dusty job. I have a feeling I'll be cleaning thin set dust and dry wall dust for a long time.

Wednesday, September 28, 2011

Pictures of the new house

So, the wait is over and we can get into the house and start tearing it up! My first remodel and I think it will be fun. (Famous last words, right?)
Here's a link to my web album, including a short video. BTW, I didn't edit it, I actually thought I was recording from the beginning.

I just want to mention that it does have a spare room. :)

Friday, September 2, 2011

It's been a while. All I can remember between now and my last post in June is that Andy and Quinn got married! Since most of you were there, I don't need to tell you we enjoyed the heck out of that week.
In some ways I've used this blog as a way to keep you all up to date on Jack's news, good and bad. I wanted to share each step of the journey personally with you. Now Jack is just Jack and he has a cold right now, like any other sibling of a pre-schooler! We continue to look for a diagnosis, but with a little perspective, I hope, I try. One tidbit is that we are weaning the ketogenic diet. Now we are on a slightly less severe ratio, still formula, and the acid reflux is 100% better. So I know he's gotta be happy about that. I sure am. It was out of control (and gross and so stinky). We are waiting to get an EEG before we go any lower, just to make sure the Infantile Spasms doesn't come back. The diet was our miracle cure, but I'll be so excited when he can sink his new molars into a teething biscuit! Oh yeah, by the way, he's getting those back teeth in and not enjoying it. I expect he'll be off the diet completely in a month.
In other news, we are buying a house! We've been in a nice rental in our neighborhood since we sold the house. I may have mentioned that we decided against building a house. I didn't love the lot we were going to build on. It would have been noisy and not likely to appreciate to the cost of building, so theoretically starting out underwater didn't seem like a brilliant plan. We really really want to live here in Civano. It's so unique, we just can't see living anywhere else. So we were waiting for the perfect house to come up. I wrote a friendly note to four of the best houses in Civano asking if they might consider selling to us. This was Mom's idea, by the way. The very next day, the owner of the best of the four, calls me and want's me to see her place. Three days later, I do, and she already has a "hold" on a house she wants to buy! That's Friday. Tuesday, Nick sees it for the first time, signs the purchase agreement, and we have the inspector through. Crazy fast. Now we are just waiting on the loan to process. Closing is set for September 22. All because of a little initiative! While we wait I am getting really excited about the remodeling. The house has a lot going for it already. What we're budgeting for right away includes paint, floors, trim and the smaller bathroom. Our bathroom needs work too, but it will take some pondering. There's a lot we want to do over time; little things like nicer doors and ceiling fans, etc. The yard is a huge blank canvas. And that's one thing that makes this house so special is the large lot size. Also it has a three car garage and a long driveway; Nick is very excited about that! So, modest house - great outside! Our lease is up Dec 31, so we'll move in right before Christmas, probably as soon as I get back from Monroe. Throw that in there too - The kids and I are driving to Monroe Nov 7 and coming home Dec 7. Nick will fly out for Thanksgiving weekend. Extra long because we are taking the drive over three days, and Nick will go camping with friends one of his weekends alone, and he will get a lot more done on the house with us gone!
I need to go to bed, but I promise pictures will be posted as soon as we can get in the house!

Wednesday, June 1, 2011

This is Emma going in for her first day of preschool! Notice the frog lunchbag, she's very proud of it.

Tuesday, May 10, 2011


Jack in his new glasses!! It makes a huge difference for him to see up close.

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Saturday, April 9, 2011

Tests Normal

Just a quick note to everyone...Jack's two genetic tests came back normal! Very good news. One was more serious than I was letting on, the other was more general but still a relief that it didn't turn up anything. We will keep looking for answers from time to time, but, so far, it's better to have no answer than the answers that other IS kids have. No known cause is called 'idiopathic' and it's the idiopathic IS that has the best success rate.
I wanted to share with you also that Jack is enjoying life in his highchair in the last few days. He can't sit independently, but the highchair gives enough support and puts him up closer to us. I hoped to have a picture of His Cuteness, but took a blurry one on my phone. Soon I'll get a better one and put up more pictures in general.
We're going to a wedding at a ranch tonight. It's going to be brisk up there in Oracle. I hope they'll have live music and dancing! :) Emma's very excited about it. The whole family is going, so there will be help holding Jack and corralling Emma (corralling - get it - Ha!) This is a friend of Nick's through work. He and his fiance are horticultural people.
This morning Nick is knocking out the to-do list on the old house. Tomorrow the cleaners come and Monday everybody signs! It will be official by Wednesday - the easiest house sale in history!

Thursday, March 24, 2011

The Latest

I think it's time for an update. In my last post I mentioned that we had decided to sell our house before building. The hard way is often the right way. So we spent about three months getting it ready to list and had a sign out front by early March. You can see the pictures on; it looked the best it has ever looked and I wanted everyone I know to attend the open house! But we never made it to the open house; it sold within two days!! We took the RV east to explore the Chiricahua mountains, get some much needed relaxation, and to allow the house to be available to show by realtors. During the week it was going to be by appointment only, which isn't very convenient for them. Had a lovely time completely out of phoning range. On the way back, I turned on the phone to call our realtor who said that a client of his made an offer Saturday afternoon for exactly what we wanted for it. Very exciting! The whole process has gone very smoothly. Home inspection went well with just a couple of minor things; appraiser has been through but we don't have a final number from him yet. I'm told not to worry. This couple put down about 50% so even if it appraises a little low (and it shouldn't), it won't scare the bank off. Closing date is April 15 and we have found a great house to rent. Happens to be owned by an old climbing friend of Nick's who is willing to fire his property mgmt agency and rent to us directly. The agency was over-charging tenant and owner for every little thing, not returning phone calls, and the other typical stuff they pull. That business is for real estate agents gone bad. Anyway, Tom will let us out of the lease whenever our house is built, which no one else would be willing to do I'm sure. That's the main thing among other benefits. So, we'll move in in the first week of April. It's a nice place, single-story and very spacious. We had looked for a smaller place to save money, but nothing good came up for rent, and this is still less than our mortgage. So, Gram, there will be plenty of room for you! And anyone else continues to be welcome. We won't be roughing it at all!
The next step, after settling in, is pulling out the house plans again! I think we will continue to love the basic framework that Mom designed. We're thinking that we might hire an interior designer to take over the millions of decisions that need to be made. She will be able to contribute to the plans from this point onward, so that will be our first task - to find her. I expect it will both broaden our options and save us the legwork of searching them out. If any readers of this blog have been down this road, please advise!
Ah, kids...Emma is now three. She asks everyone when their birthday is, presumably as a polite lead-in to talking about her recent birthday. She will be starting pre-school in July, I hope. Every night she asks about what we are doing tomorrow. It sounds like this:"What is it today?" Then we talk about it and she tells me that she is going to dream about it. Emma is generally cute as all get out, but occasionally whiny and obstinate. In other words, a typical three year old. She is really into books, which is wonderful. Begs me to read to her and sometimes tells the story to herself. I have a sneaking suspicion that she simply uses reading together as a way to have my undivided attention. Fair enough, I say. It's effective alright! Gram gave her The Color Book and it's her new fav- visually and conceptually brilliant. (Thanks Gram!) I'm very pleased that she has taken to my beading present. It's medium sized wooden beads to thread on dress-shoe strings. She can really do it and it holds her attention. I rarely give the favored present, so I'm excited about it. I can remember those hoppity balls in the gym at Good Shepherd, anyone else know what I'm talking about? They have a handle on top, which you straddle, then you bounce around. I got her one of those and she likes that too. Mom gave her a talking Dora doll that sings "Feliz Compleanos" Dora showed up tonight when, after going potty, Emma ran downstairs to get it and gave me a little performance before I could get her panties and jammy pants back on! Little stinker.
Jack is doing pretty well all around. An EEG on March 10 showed that the brain pattern background was "improved", in other words, better, but not great. The other seizures he's been having seem to be more frequent than we thought, however, they have become less and less severe, to the point that we haven't seen one at all since around that week. This means that even if the frequency is at a worse starting place than expected, the intensity has drastically improved, and presumably the frequency will also improve with time. All in all it showed that the ketogenic diet is working. Hurray! Jack is off all meds except for Prevacid to help the acid reflux brought on by a high fat diet. Incredibly, he gets therapy most days. PT, OT, and a child development specialist are seeing him at home weekly, all are provided through the state's program for developmental disabilities. In addition, volunteers from the neighborhood spend two hours working with him on the days he isn't visited by the pros. I am just blown away by how much support we get from our wonderful neighborhood. I'm sure you've all watched the video of Jack laughing. He sort of cracks himself up sometimes, but he is also very responsive, and ticklish, and focused at times. He's used to being on his tummy now and has a stronger neck and upper torso. He works himself around in a circle on the floor if left to his own. That's amazing to me. I feel like he's just about to turn a corner in the next month or so, due to all the work everyone is putting in and to the diet. I see so many encouraging signs. Being ticklish all over tells me that his "gnostic sensation" is at the next level, it means that he can distinguish between mild sensations, recognize whether it is pleasant or unpleasant, and respond appropriately. That's an amazing organization of sensory input and motor output! So, Jack is doing great and we are really proud of his efforts. I'd like to leave it at that, but you all know we saw the geneticist February 28. He ordered a couple of tests: one is a specific (and scary) RARE genetic mutation that he either has or doesn't have; the other is more casting around in the dark to see if we stumble on something. Both will be back in about 6 weeks. And so we wait. While we wait, Jack will continue to delight us with new achievements. :)
Is there news on us parents? The house sold. We'll build a new one. I'm slacking on my running (if I had just one hour per day that was mine alone...and not at 5am, Nick, thanks for the suggestion, though). Nick is very happy to be project-free on the weekends. We have a date Saturday night. Hola!

Monday, March 21, 2011

Sunday, January 9, 2011

And the rest of it...

On the home front, we have decided to sell our house first. Then move into a rental and start to build our new house from there. Less stress. So, I have been diligently packing up to list the house by Feb 1. It's nice to live without the clutter, I'll tell you that. House plans are almost there. Just have to keep tweaking things until they're perfect. The hardest part is conveying the exact look of the exterior to the architect. And deciding on a color! Driving around Monroe gave us some good examples.

Kathy and Patrick were here for a couple of days and that was nice. Both are a big help around the house, boxing up and the like. We didn't do much else. Went to Target, which is a big treat for Emma!

I can't think of much else going on...just excited about Jack. Optimistic days.

2011 - New Year

Has it really been more than two months since my last confession...I mean, post? And what a terrible post to leave off at! I think I did kind of hit a wall around then. Part grief, part fear, resentment, exhaustion, and frustration! It's been a tearful couple of months as I actually experience all the emotions I had been keeping at bay. I'm feeling pretty good today, though.

We started the ketogenic diet on December 30th under the advice of Jen Avis, who works with Tim at the diabetic clinic. Shockingly, not a single dietitian in Tucson has been found to have experience with the diet. Why, you ask? Because doctors don't prescribe it. Jack's ped. neuro. worked with someone from Boston Children's hospital and thinks the diet is great for parents who can do it. She's been in town only 2 years and I think she's as surprised as I am. But it was on the agenda at a conference she attended in Cleveland this year, and was widely supported. Anyway, for Jack it shouldn't be as difficult as I originally thought. Jen convinced me that we may as well stay on the formula for the whole year if it works. There is no way to manage the fat:protein:carb ratio with food as well as it is done with the formula. He will have his whole life to enjoy food when he outgrows IS. So, every night I mix 110g formula with 550mls hot water and divide it by four bottles. That's about 5 oz per bottle. 752 calories per day. We can add more water, if he seems to need it. That amount is calculated to give him slow growth, so periodically we'll go up on the calories. He has adjusted to the taste well.

For his other meds, we are weaning the Sabril and Phenobarbital slowly. He is on a good dose of Keppra still. All of the above need to be carb-free. That meant switching to a tablet of Keppra, brand-name only, please. Let me put a question out there for anyone to comment on. We are having a lot of trouble getting Jack to take meds lately. The Keppra is very bitter, and he notices it even crushed into 5oz of formula. The Sabril is in water, how do we get these two down him? It's a real struggle BID! That's nurse-speak for twice a day;)

At night when Jack's phenobarbital levels are lowest, he has such a wild time! It's fun until about 10:00pm., when it isn't. But last night, he LAUGHED! I mean, lots of real laughs. I was blowing raspberries on his neck and I guess I just found his tickle spot. And let me tell you, if you didn't know, the sound of Jack laughing is like crack to me. I can't get enough! He was jumping all over the place and having a grand old time. I hope this means the diet is working.