I’m still very out of sorts with the office move. Overall my thoughts are that it is good however, I am still having trouble working nicely showered, with no TV and no dryer in the background. I’m finding it hard to get everything done, not because I don’t have time, but because I am not trained on when to do them. And what about how I am still wanting to do billing at midnight? But I have plenty of time to do it throughout the week at the office.

Many things are out of balance actually. Gage hasn’t recovered yet from the testing last week. He’s having an okay time in his room and with special ed, but math seems to be another story. I think we have to ride it out until the end of the year, which is just a few weeks away.

Summer is upon us and we have a capable babysitter for 4 days a week. The summer is thought out and planned but is sure to change. I am looking forward to not having to be at home trying to work while the kids are here also. That means I don’t have to send them away to the pool or the park. They will have a better summer because some days will be spent at home and some at the pool and some at the park. I think it will be a good summer.

I have something like 50 pages of two applications to fill out by Thursday at 8am so I can have them signed at the hospital so that Quinn and Gage can apply for Camp Independence. I’m questioning if Quinn will be able to handle being away from us for a sleepaway camp, but she is game because Gage will be going. Gage is excited to see his friend from dialysis for the week. It’s been too long since we have seen him.

I have several stacks of paper to go through and I just know there is a deadline I am missing for something at one of the kid’s schools. Must get throughthe piles.

I am still trying to recover from the office move by moving things around the house. Julian is less than thrilled at the prospect of moving things. But we have an entire floor and some kids things can be utilized in the new sought-after playroom. I am not sure how much I think I can do every evening, but it is much less than I am actually able to do. Quinn needs her curtains up for example. I need to get a new comforter for the newly acquired guest room. I need to get stair runners of some sort because we have fairly light carpet and it was just cleaned. And well, we have muddy kids who sadly we didn’t train early to remove shoes upon entering. You’d think that is no big deal really – the removing of shoes. But for kids who are physcially delayed it takes too long to take off and put on shoes. I know, lazy mom.

Along with figuring out where I am working and living and what necessary items I must have at BOTH locations, I have struggled with blogging time. I used to blog at night but I had a much better chair to sit in than a kitchen chair. And well, the comfortable chair sits at the office UNUSED right now while I am blogging. So unfair.

Gage has had a very rough week. Well, his good weeks might be another kid’s bad weeks, so I realize there it is a matter of perspectives.

He had standardized testing this week and he was moved to a new room, with a teacher he didn’t know, so he could be in a setting with 3 other kids. By the end of the week he was over it. The test, us, his teachers.

This pretty much sums it up.

HILL BRIEFS
Senate Passes Genetic Nondiscrimination Bill
Thu. Apr. 24, 2008

Judiciary. The Senate today passed, 95-0, a genetic nondiscrimination bill that has been languishing in Congress for over a decade. House leaders expect to take up the same bill and pass it quickly and send it to the White House. In the past, President Bush has indicated he would sign such a bill. The measure would make it illegal to deny insurance or employment to people based on their genetic information. It passed the Senate twice with overwhelming majorities in 2003 and 2005, but each time GOP House leaders were unwilling to take it up. Sponsors cleared the last barrier this week when Sen. Tom Coburn, R-Okla., lifted his hold on it after negotiating several last-minute changes.

Thu. Apr. 24, 2008

The PKD Foundation reports that there was an overwhelming response to the plea for calls to the offices of Senators across the country.

So, thanks.

After my post, my friend Angela sent me this for a laugh. Dawn will especially love this, I know. And her Noah, would, because he loves him a standardized test (I’m not even kidding) but he’s homeschooled, so he doesn’t get tested as much as he would like! Dawn made me laugh yesterday because we talked about Gage and Noah swapping their schooling positions – Gage would be perfect for Dawn, well with his resistance to formal education, and her love of letting kids learn at their own pace with what their interests are and Noah would thrive at the brick and mortar school.

Go and see this.

This states the problem that is No Child Left Behind. I have strong feelings about why it doesn’t work and it pulls from other learning experiences kids need. Like…art, music and PE.

Since Gage was 18 months old he’s been in therapy. He’s been through speech, occupational, vision, aquatics, and physical therapy in addition to extra tutoring (on top of an individualized education plan with goals) for acedemics. Over the course of 7+ years there has never been a time when he wasn’t trying to reach a written, parental-therapist/tutor/teacher goal because he was deficient. Quinnlin is not without deficiencies and goals either. She’s been in or is doing all of the above, with the exception of aquatics and tutoring (so far). Of course, this means as a family, we all have goals to help them meet their goals.

In all of the cases where goals needs to be met (I’m not talking about the next milestone in the kidlet books, I’m talking about knowing the alphabet at age 6) we are an integral part of that goal being obtained. On top of the appointments there is homework. For therapy it was continuing it at home. Body brushing, bean sitting, ball rolling, and muscle building among many.

It gets old…the always being behind and trying to catch up. Some seven years later you’d think I’d be used to it enough not to be tired of it, but you would be wrong.

Quinn is hanging in there. But she had a different start. She goes to an amazing school (since age 3) that has helped her catch up as much as possible for her. Gage didn’t get that opportunity. He was in private therapy until age 4ish and went to a regular church preschool that was unequipped for someone like Gage. His pre-k teacher couldn’t have been less interested in any of Gage’s special needs. He had a wonderful, playful, happy year, but it wasn’t right for him educationally. At age three Gage could have gone to Quinn’s school (he would have qualified within 5 minutes of an evaluation) and he would have had a much better start. I didn’t know about it. It is my single, biggest regret regarding Gage’s education.

Gage is tried of having to catch up. He is under a lot of pressure from us, and his teachers and tutors to catch up. Last year, his first grade year, was The Year in Which We Kept Gage Alive. And Gage is paying for it.

His school has done a remarkable job helping him reach his potential. A lot of this year was letting him hang onto 2nd grade, but really covering the fundamentals of 1st grade. And for Gage, he’s excelled and we’ve celebrated. The outside observer might think, “what is all the fuss about?” His reading and math are hard earned. By him, his teachers and tutor and us. And it is tiring. Day after day we monitor his progress on every little thing. Gage never has the luxury of coasting. Not through a grade, spring break or a summer break.

If it gets old for me, I wonder how Gage feels?

This week Gage started standardized testing and he has been acting out a lot. Lots of “I hate school” or “I hate (fill in the blank)” and there is defiance at school with doing some math work and it is all very painful to watch because he is just making it all so difficult for himself. No matter how many times I try to explain this, he doesn’t get it. I try to explain that I understand he is scared and nervous, but we just want him to do his best. Take his time. Use what he has learned and there won’t be a problem. He’s not buying it. He says he is not scared. I wonder if the coffin dream with morphing colored skin and one thing being another, or him wanting to sleep in Quinn’s room for the past two nights any indication of the stress he is under.

To raise Gage you have to like a challenge of a puzzle. Because it is hard to figure out how best to support him, encourage him, and push him — and figure out when is the perfect timing for the desired results. The line is fuzzy between nurturing mom and drill sergeant.

He’s definitely struggling this week. I wish I could make it better for him in some way. I can only tell him I know he will do his best (I don’t really know if he will) and that he can do it (I think he can) and I understand what he is going through (I don’t, how could I really?) and that I’m here if he wants to talk about it (although I know he won’t).

Gage’s world, educationally speaking, is pretty hard for him right now. But he’s hanging. I’m proud he’s hanging, but I’m about to cry because it is and will always be a struggle for him.

There are many changes going on in my life right now. We now have a real office. I have to get up every morning, shower, get dressed and go into an office. I think this is mostly positive. Except when I want to be home working. And now that all of my work is at the office, I’m a little lost without some of the things I am used to working on at night.

I’m used to blogging at night. But now I only have a laptop at home and no real office chair and it’s different. I am sitting in my (old) office at home and on the floor typing this. Not great for the back and elbows.

Dawn upgraded my blog and my pictures aren’t loading. We don’t know why. I’m at her mercy because crap, if she doesn’t have a full life. So that is why last week’s photo is titled, but no photo accompanies my post. And you should know, it is a very cute picture of Quinn. Also, the post notification isn’t working anymore. I guess it doesn’t work with the upgrade of Wordpress. So if you are waiting for a notification in your email box to come and read, you will be waiting for a long time.

Gage is being Gage and challenging, but he is doing okay. For Gage. Other people probably think he is not doing so good, but they aren’t looking at the whole picture that is Gage. He had his first recital for since beginning piano just under 2 months ago. He was first in a group of 16 students. He did awesome. He would normally shut down and not want to participate in such a public event that showcases talents, but he did it. I cried. Because he played “Old McDonald” and “Merrily We Go Along.” Seriously. How lame of me to cry as Gage would say.

Quinn’s ped nephrologist doesn’t feel we need any intervention right now based on NIH labs. I hope to talk with her about her liver and how we can help with the itching and tiredness.

I just finished an auction item for Gage’s class for an auction this weekend that I won’t be at! I’m going to be attending a board meeting for the PKD Foundation. Oops! Forgot to take a picture.

I want to blog about many things, but am having trouble sitting down to do it. I want to write about Gage and how much he’s changed. I need to do this so that I record his progress. Because in the everyday world of living with Gage it is hard to remember. I want to write about being a mutant family, because our visit at the NIH solidified the weirdness of being a mother in a mutant family. I need to do an installment of Spoken in the Mutant Family Household about the conversation with Quinn at the airport about Obama with two African-American women.

I am loving being able to sew and create at night. Sadly it is still something that is keeping me up late. Am still working on balance with my night time. Because I do love a quiet house to sew.

I’m doing some creative writing and it is been good for me. It is cheap therapy. And I can do it in my pajamas which is an extra bonus.

The house is still in disarray. I’m very stressed out about this because when the house it out of order I am not as efficient with my time and that is just pissing me off. It’s making me crabby. Which makes me tend to snap at poor J. Which is bad, because he is a really nice person that doesn’t deserve me snapping at him.

But about Julian. I will say I haven’t seen him this happy in a long time as I watch him get ready and go into the office. He is almost giddy. He is very happy to be in a real office. I’m still torn, but know it will be good for the business.

I must go to bed! Quinn is trying to sleep without pull-ups! Which is amazing. But also means that probably her kidneys aren’t working like they used to and it’s noticeable now with her night time wetting.

This is such a random post. Sorry. One day soon, I’ll return to our regular boring writings, instead of this disjointed writing.

Special hugs to Jen as she worries about her baby Parker and toddler Jackson. You and your babes are in my thoughts.

My Quinnlin.

I took her out to dinner last night because she wanted waffles and bacon. We were ordering drinks and she spent a LOT of time during out dinner asking if this or that had high potassium. She’s very concerned about her potassium levels. She doesn’t know why.

This is where her head is at: “I don’t know why it’s bad to have high potassium…now why is it bad? Because if it is bad to have a lot of milk, then I just want a little milk, but what? Because I have milk at school. Can I still drink milk at school? How much milk should I drink at school? Does bacon have potassium? Because I really, really, really, really, love, love bacon.”

Yes. This trip to transplant is going to be such a different ride than the first time.

In December one of our goals was to get the company out of the house by the end of 2008. Two days before we left for the NIH we moved our offices out of the in-law suite in our home and into a cheery space with lots of room.

And so, on January 4th I found this building, which is near our home and quite lovely. It had all the elements we were looking for…close to home, rental income with other offices, enough space for us to spread out and grow a little bit. We never looked at another building in person. I saw a lot on line, but there wasn’t really a need to go look, because this space fit our needs. Except it was about 6-8 months too early. So we had to scramble to figure out how to buy it, but we settled on a contract near the end of January and we closed early March.

It’s been utter chaos since. We had some technology upgrades (Blackberry phones for both of us! Ah, the addiction of email whenever!) that have me confused on a daily basis. Because I could work anytime while our business was in our home, I often did. Clients would get emails from me at 1:00 in the morning and I could do billing or paperwork after the kids went to bed.

But now I am trying to set some work day boundaries and it is hard. I am not sure what I need at home or at the office and the split has me out of my usual routine and I’m feeling very unsettled.

I think it will be good when I get used to this new situation. Just my observations since day 4 in a “real” office.

- Craigslist rocks. I’ve furnished our office with everything off CL and it’s awesome. A cool conference table the shape that matches our office? Found it for 50 bucks. Six desks that are perfect for the space and a little retro. Sets of chairs crazy cheap. And cool. And retro. And orange and red – also the colors of our logo. It’s visually pleasing to go in the office. Except for the unpacked boxes and the cheap chairs that need new footer cover thingys.

- The laundry, which I happen to love to do (I know, you hate me for it) is never ending for the sole reason I can’t do it while I work. Plus, it sits on a table in our living room. The kids have taken to just getting dressed down stairs. We’ve all forgotten that clean clothes really belong in drawers where they are happy with other clean clothes.

- Spring is here, then it is not. Shorts or pants? More laundry drama.

- I’m completely confused about what I need at work to work and what I need at home to not work or to maybe work a little. I’ve been so used to having fuzzy lines where work and home or as my friend says “church and state” that I’m confused most of the days. Twice I’ve had to come home to get some to be able to do something at work.

- I love my blackberry. Which I had resisted getting for a long time because I admit it. I’m an addict. I should belong to a 12 step program for email abusers. But I don’t care. It actually helps my stress level because I know for certain something isn’t going crazy with work if I sneak off to the grocery store before getting the kids from school.

- I don’t do well with clutter. I like organized space to live in and work in. If my house doesn’t get put together SOON, like this weekend soon, I’m going to whimper in a corner. This much I know about myself. I need to get things under control.

- Speaking of control. The 20lbs I gained as part of Gage’s new kidney treatment has not left me. Ugh. And it seems purchasing a new building and moving your business out of the house, a trip to a research center with your kids, a couple of trips in between aren’t so good for the emotional eating either.

- I’ve been planning the summer kiddo schedule with the summer sitter and camps and vacation. It’s easier to schedule a kidney transplant. Really. It is.

- I have the best family eva! One sister helped out at work, mom helped out while we were gone to the NIH, one sister sent my kids booter scooters, which they love, and one has offered to take my cute kids next weekend while I am out of town so Julian can get caught up. Can’t leave Dad out…he arranged my entire office move, going above and beyond. Seriously. I know you are not as lucky as I am.

- Dawn always makes me laugh. And we should never go without talking live for over a month. It’s just not fair. I have to keep reminding her that my kids have crappy kidneys (and eyes and livers) and that she should make me laugh more. She needs to get an agent for her book.

- Even after almost 14 years of marriage and owning a business together, I still really, really dig my husband. I like telling people we have a strong marriage even though what we’ve been through has the capacity to mess up a good thing. He makes me laugh most of the time, except when his humor timing is off. Like yesterday at lunch.

- I spoke to a friend tonight that has a beautiful baby and she is worried for her baby. And yet, she is still concerned for me and my babes. We compare notes, and talk about being worried. And we laugh too. We concur there’s no corner on the market of pain and hurt at certain levels.

So, tomorrow is Friday and the clean up of our lives begins. I’m glad the weekend is here so I can get home from work.

Change is the BIG BUZZ word in this presidential campaign. Here is a way you can really help change something. This is near and dear to my heart and can impact our little mutant family. I need your help, by calling your senators TODAY about supporting this bill that will be voted on THIS WEEK.

The Genetic Alliance organization had used our family to show an example of a family whose genetic make up can adversely affect their lives — in more ways than the obvious. Gage and Quinn are especially vulnerable to discrimination from future employers because of their disease. Besides my wish for them to live an average life, I wish for them to be judged on their work ethic and character instead of the genes that we parents unknowingly passed on to them.

Please help make that a law. Do it for Gage and Quinn…right now! What are you waiting for?

What is the Genetic Information Nondiscrimination Act?

The Genetic Information Nondiscrimination Act [H.R. 493, S. 358] is a bill that will prohibit discrimination on the basis of genetic information with respect to health insurance and employment. It was introduced to establish basic legal protections that will enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies that will result from the scientific advances in the field of genetics. It would also prevent health insurers from denying coverage or adjusting premiums based on an individual’s predisposition to a genetic condition, and prohibit employers from discriminating on the basis of predictive genetic information. Additionally, such legislation would stop both employers and insurers from requiring applicants to submit to genetic tests, maintain strict use and disclosure requirements of genetic test information, and impose penalties against employers and insurers who violate these provisions.

From the PKD Foundation today,
Urgent Action Alert: The Senate Will Debate the Genetic Information Non-Discrimination Act
This Week!

The time has come… After much delay, the Genetic Information Non-Discrimination Act (S. 358) could go to the U.S. Senate floor for debate and a vote as early as Tuesday, April 15. A nationwide grassroots effort has begun to convince every Senator to vote for the bill.

Congress has tried and failed to pass this vital legislation for 12 years. The U.S. House already passed this legislation in early 2007. However, if the effort to bring GINA to the Senate floor fails now, there will not be another attempt this year. We need a massive response rate from you and other advocates from all the organizations fighting for this bill to make this effort a success.

Thank you for your efforts on behalf of everyone affected by genetic diseases to support this legislation to help end genetic discrimination.

Here’s What To Do:

This is a two-step Action Alert:

Call Senate Majority Leader Harry Reid’s (D-NV) office and thank him for his efforts to schedule a debate and vote on the Senate floor for GINA. As Majority Leader, Reid controls what bills get a vote in the Senate.

Reid’s office: 202-224-3542. (If it’s busy, keeping trying!)

Sample script
My name is (YOUR NAME), and I am calling to thank Senator Reid for his leadership on the Genetic Information Nondiscrimination Act, or GINA (S. 358). I would like to encourage him to bring GINA to the Senate floor as early as possible. Thank you!

Call your state’s two Senators and ask them to support GINA. You can find their names and contact information listed below. I could only make it so easy for you!

Sample script for you to use:
My name is (YOUR NAME), and I am a constituent living in (YOUR CITY, STATE). I am calling to ask for (NAME OF SENATOR)’s support for the Genetic Information Nondiscrimination Act, or GINA (S. 358), and all the procedural motions needed to support this legislation. This legislation provides fundamental protections against the misuse of genetic information in health insurance and employment decisions. It is vital for all Americans to have these basic protections. Thank you!

State Member Phone

AK Lisa Murkowski (202) 224-6665
AK Ted Stevens (202) 224-3004
AL Jeff Sessions (202) 224-4124
AL Richard Shelby (202) 224-5744
AR Blanche Lincoln (202) 224-4843
AR Mark Pryor (202) 224-2353
AZ Jon Kyl (202) 224-4521
AZ John McCain (202) 224-2235
CA Barbara Boxer (202) 224-3553
CA Dianne Feinstein (202) 224-3841
CO Wayne Allard (202) 224-5941
CO Ken Salazar (202) 224-5852
CT Chris Dodd (202) 224-2823
CT Joseph Lieberman (202) 224-4041
DE Joseph Biden (202) 224-5042
DE Tom Carper (202) 224-2441
FL Mel Martinez (202) 224-3041
FL Bill Nelson (202) 224-5274
GA Saxby Chambliss (202) 224-3521
GA Johnny Isakson (202) 224-3643
HI Daniel Akaka (202) 224-6361
HI Daniel Inouye (202) 224-3934
IA Chuck Grassley (202) 224-3744
IA Tom Harkin (202) 224-3254
ID Larry Craig (202) 224-2752
ID Mike Crapo (202) 224-6142
IL Richard Durbin (202) 224-2152
IL Barack Obama (202) 224-2854
IN Evan Bayh (202) 224-5623
IN Richard Lugar (202) 224-4814
KS Sam Brownback (202) 224-6521
KS Pat Roberts (202) 224-4774
KY Jim Bunning (202) 224-4343
KY Mitch McConnell (202) 224-2541
LA Mary Landrieu (202) 224-5824
LA David Vitter (202) 224-4623
MA Edward Kennedy (202) 224-4543
MA John Kerry (202) 224-2742
MD Benjamin Cardin (202) 224-4524
MD Barbara Mikulski (202) 224-4654
ME Susan Collins (202) 224-2523
ME Olympia Snowe (202) 224-5344
MI Carl Levin (202) 224-6221
MI Debbie Stabenow (202) 224-4822
MN Norm Coleman (202) 224-5641
MN Amy Klobuchar (202) 224-3244
MO Kit Bond (202) 224-5721
MO Claire McCaskill (202) 224-6154
MS Thad Cochran (202) 224-5054
MS Trent Lott (202) 224-6253
MT Max Baucus (202) 224-2651
MT Jon Tester (202) 224-2644
NC Richard Burr (202) 224-3154
NC Elizabeth Dole (202) 224-6342
ND Kent Conrad (202) 224-2043
ND Byron Dorgan (202) 224-2551
NE Chuck Hagel (202) 224-4224
NE Ben Nelson (202) 224-6551
NH John Sununu (202) 224-2841
NH Judd Gregg (202) 224-3324
NJ Frank Lautenberg (202) 224-3224
NJ Robert Menendez (202) 224-4744
NM Jeff Bingaman (202) 224-5521
NM Pete Domenici (202) 224-6621
NV John Ensign (202) 224-6244
NV Harry Reid (202) 224-3542
NY Hillary Clinton (202) 224-4451
NY Chuck Schumer (202) 224-6542
OH Sherrod Brown (202) 224-2315
OH George Voinovich (202) 224-3353
OK Tom Coburn (202) 224-5754
OK James Inhofe (202) 224-4721
OR Gordon Smith (202) 224-3753
OR Ron Wyden (202) 224-5244
PA Robert Casey (202) 224-6324
PA Arlen Specter (202) 224-4254
RI Jack Reed (202) 224-4642
RI Sheldon Whitehouse (202) 224-2921
SC Jim DeMint (202) 224-6121
SC Lindsay Graham (202) 224-5972
SD Tim Johnson (202) 224-5842
SD John Thune (202) 224-2321
TN Lamar Alexander (202) 224-4944
TN Bob Corker (202) 224-3344
TX John Cornyn (202) 224-2934
TX Kay Bailey Hutchison (202) 224-5922
UT Robert Bennett (202) 224-5444
UT Orrin Hatch (202) 224-5251
VA John Warner (202) 224-2023
VA James Webb (202) 224-4024
VT Patrick Leahy (202) 224-4242
VT Bernard Sanders (202) 224-5141
WA Maria Cantwell (202) 224-3441
WA Patty Murray (202) 224-2621
WI Russ Feingold (202) 224-5323
WI Herb Kohl (202) 224-5653
WV Robert Byrd (202) 224-3954
WV John Rockefeller (202) 224-6472
WY Michael Enzi (202) 224-3424
WY John Barrasso (202) 224-6441

Last night Quinn was hungry before dinner and asked for a banana. I had to say no to her because her potassium was really high last week and I am going to try to cut out some potassium items from her diet before labs to see if it will make a difference (even though I know it will). I told her that her kidneys weren’t working as good as they should be and that they can’t process the potassium from certain foods and bananas was one of them.

“But I have strawberries and raspberries and blueberries! And you LOVE those berries!”

A weeping Quinn says: “But I want a banana! I don’t want berries!” And she cried for a long time. Twenty minutes at least and I held her close as she cried and got snot everywhere on my shoulder. It was sad. For her that was the first tangible loss of something due to her kidney function. Her reaction didn’t surprise me at all after all the kidney talk last week.

I was thinking about Dawn and how she thinks about adoption in relation to things that her daughter does. She always thinks first that is it related to adoption. She doesn’t first think it’s a personality trait or developmental to her age. I can relate with her because I was thinking that Quinn was reacting to her failing kidneys and the changes that are happening and the changes that are coming (after all, she has Gage’s experience to draw from).

But maybe she just really wanted a banana.

It’s difficult to explain to Quinn how her life will be changing in the near future. Her diet will be changing, and we’ll likely be adding meds to her ever growing list of meds. She’s at 9 now. So maybe after some appointments I am now setting, she will be at 11 or 12? That is something she will notice. Plus, I need to have a conversation with the liver doc after we get MRI CDs from the NIH because of some things the NIH liver doc said.

I’m already noticing how different Gage and Quinn are in their emotional processing of their own failing kidneys and their predicament. And I’m already noticing the difference in how I am parenting them through failing kidneys.