PKD Update

Well, I finally heard from my doctor with lab results. Hemoglobin low and creatine high. Both of these could be an underlying cause for my tiredness. Hemoglobin was 9 and creatine was 2.2. This is a substantial decline since last visit. This happened right after the birth of Isaiah as well, so hopefully this too can be explained away, i.e. STRESS. Advised to go ahead with ultrasound scheduled for June 4th and repeat blood work same day, return to doctor on June 10th for all results. So all in all things could have been a lot worse. Still awaiting word from Nicholas' doctor as far as the MRA goes and still waiting for the blood pressure monitor as well.

We are leaving for vacation tomorrow. We will spend Fri. Sat. and Sun. night in Bay City with family and then leave for the park around 4a.m. Monday morning. We are going to Lake Bob Sandlin State Park for the week. My husband is a huge Pittsburgh Steelers fan and this park is in Pittsburgh. Texas that is!!! Oh well, that is probably the closest he will ever get. We will be returning home on June 1st. Looking forward to a long break.

Family

This is a picture of Dad and Mom with our Pastor and his wife Michele.

More Pictures

The Happy Couple

They looked just beautiful.

Getting Ready

Here are a few pictures of us getting ready for the anniversary party. Everything turned
out very nice. This was a first for our family. My husband did not grow up in a family
where hugs and kisses were given. I come from a divorced home. A great big thank you to
our church family for their support and help.

Thursday

WOW!! Talk about a busy week. We have been busy all week in preparation for the upcoming surprise 45th anniversary party we are having for my in laws. The video presentation was just finished. To y'all who know me that drives me crazy because it is very last minute. The nurse called today on Nicholas. No results just more waiting. We have been waiting for a month now for a 24 hour blood pressure monitor. Today the nurse said they would like to schedule a MRA of the brain. There are two problems with this. One is if this is not performed next week it will have to wait until the second week of June. We will be gone on vacation from May 23 through June 1st. Second, unfortunately this will require sedation which is very hard for me to endure as it is quite unpleasant for Nicholas to go through. Please pray for our family during this time. I must go now as I still have plenty I could be doing. Thanks to all who take the time to read what I have to say.

It just so happens that Isaiah loves these little red things. He actually has fun eating them allowing the juicy seeds to run all down his clothing.

Oh well

Ever heard the saying 'don't cry over spilled milk'? Ok then, don't cry over dropped eggs either.

Tuesday

Today was a fun day. This is our son Nicholas or
as we usually call him Nick. Yeah I know he is only 15 (almost)
and already has his own cafe. What can I say other than he is
brilliant.






Here are Catie and I as well as our daughter Victoria acting silly at the party supply store.

GINA

We Did It! GINA Passes U.S. Senate, Will Become Law

The Genetic Information Non-Discrimination Act (H.R. 493; GINA) passed the U.S. Senate today by an overwhelming vote of 95-0, clearing the way for the bill to go to President Bush for signing into law.

After a battle that lasted more than 12 years in Congress, GINA sailed through after intense negotiations with Senator Coburn (R-OK) over the past two weeks produced a compromise. Coburn had blocked the bill from being passed since early last year.

The PKD Foundation wants to express its deep gratitude to our advocates for their persistent lobbying in support of this legislation, especially over the last two-and-a-half years when we were so close to passing this legislation several times, but fell just short of doing so.

You have proved that the power of grassroots advocacy can make a difference. Since 2006, more than 200 people have traveled to Washington, D.C., to lobby more than 300 Congressional offices on behalf of GINA. Your quick responses to our Action Alerts have generated hundreds upon hundreds of phone calls, letters and faxes to Congressional offices.

It was well worth the effort. Now, PKD patients do not have to fear testing early for their disease or volunteering for vital clinical trials. As Senator Edward Kennedy (D-MA) said today during the vote, “GINA is the first major civil rights legislation of this century.”

The not-for-profit PKD Foundation leads the fight against PKD through research funding, patient education and advocacy. For more information, visit http://www.pkdcure.org/Home/tabid/36/Default.aspx or call 1-800-PKD-CURE.

Marriage

My Dear Father and Mother-in-law recently celebrated 45 years of marriage. Thanks be to God. My father-in-law immigrated to the states from Mexico, worked hard and eventually was able to bring his family along too. They had a very troubled marriage early on (much like their son and I) but just like us God's grace came into their lives and saved their marriage. They had five children together(4 boys and 1 girl again like us), 8 grand children and 1 great grand child with another on the way. I have been in their family for almost 20 years now and they received me with open arms from day one. This picture is of them forty-five years ago signing their marriage licence.

Thought for the day

Be not afraid of going slowly, be afraid only of standing still.

Chinese Proverb

Orange

If not red how about orange.

Red

We have been blessed with four sons and one daughter. Every now and then I get to have fun dressing my boys. This was one of those times.

Organization

I love it when things are neat and orderly (according to me, I know orderly is relative). These are just two of the drawers in my kitchen. Today I will be busy getting ready for our church camping trip which is tomorrow. The weather should be nice and we always enjoy ourselves even if it rains. Victoria had good rsults on all her blood work, and we are still waiting for the machine for Nicholas, Isaiah's check up went well also. I have not said much about Jaime but he is our eldest. He is 17, has one year of schooling left (less if he applies himself) plays the piano and is starting guitar, loves music, and to cook (not bake although he does try)and works part time for a small catering company about two blocks from our house The Place on the Corner/Affairs to Remember. He has been there for almost a year now, boy time flies. Before that he worked a year and a half for Bubba's Burgers and Wings which was also about two blocks a way. Well that is it for now. I have plenty to do. Have a wonderful day!!!