Pacey wanted to come in my suitcase!

Is something I hate, especially when it has to be for so long. I just got back from the cemetery trying to fit 3 weeks worth of visits into one. So now i am sad and fighting back the tears.
It was also time to wash the brenhams hospital blanket that i sleep with every night. I havent washed it until today (i know, i know thats gross, but it has "him" on it, he was wrapped up in it the whole time at the hospital). I begged robb to let me leave it the way it was but he insisted it be washed before we leave for mayo. Deep down i know i had to do it, for my own health but it is so hard. now everyone thinks i am crazy huh?
Three weeks is a long time to be gone from home. i am trying to savor every last minute of being in my home and playing with my puppy.
I am going to miss it all. Please pray that this time goes fast!

We were planning on flying out early tomorrow morning but b/c of some predicted rain in the forecast for tomorrow we are leaving tonight at 7:00 instead. We are being flown my a very generous man robb does some work with which is so great. After transplant i have to be extremely careful not to get sick so a commercial flight made me nervous about that, all the germs and everything, and plus we can get there in 1.5 hours and no layovers or anything. I am nervous though, i am not big on flying, good thing its a short flight.
Please be praying that all the last minute details fall into place and for safe travel. I will post when we get to our hotel!

Last night Robb and I went out to celebrate our anniversary (its not until the 14th) early since we will be at Mayo during the real day. We are so glad we took a few hours out of our busy weekend to do that.
We had dinner and went to see the movie "Fireproof" it was so good and we both left with a promise to each other to be a better spouse. It was life changing. You must go see it!

I cant wait to get my transplant
I cant wait to get my ports taken out
I cant wait to burn everything that has to do with kidneys and dialysis
I cant wait to get rid of everythihg that remids me of this awful time
I cant wait to talk to people about something other than kidneys
I cant wait for this blog to turn back to brenham stuff, the way i intended it.
I cant wait to have my energy back
I cant wait to be free
I cant wait to move on with my life!

Let's Go!!

I am getting my transplant in 7 days!!!

I am so excited!

A few prayer requests:

Obviously that the surgery goes well and the kidney takes well right away
For a quick and painless (i know i am dreaming) recovery
For Mindy's surgery to go well and for a quick and painless recovery for her too
Mindy has come down with a little cold, please pray that she feels better SOON!
That I dont come down with anything.
For our families
For our nerves
For safe travel
For everything to come together quickly in terms of travel and lodging accommodations.
That i will get everything done that needs to be before we leave, my list is long and keeps growing!
And most importantly prayers of praise and thanksgiving to our wonderful Maker for this amazing blessing of a new life for me!

~Thank you all SO MUCH for all of your prayers and support during this crazy journey. I wouldnt be where i am at today if it wasnt for all of you, i feel very blessed!

She's APPROVED!!!

I am getting my new kidney on the 8th!!! Whoo-hoo!!

Can you believe it??

God is so good!

The woman who made my new blog design is offering a contest for a free blog design. If you would like to enter leave a comment on her blog about what you like about my blog makeover and you will be entered to win! You have until the 3rd to enter and the winner will be drawn on the 4th. Good Luck!!
Also if you dont win she is offering a great deal on makeovers for the month of October. $40 plus the cost of the digital kit (usually between $3-$8)!
Cant wait to see all of your new layouts!!

until tomorrow.
Mindy's test results are being brought to the board for approval tomorrow at noon and then we schedule surgery!! Eek!
Keep checking in, i will update as soon as we hear!

A 7 month old? i can not even imagine how different my life would be right now if sweet brenham boy was here with us. crazier? less crazy? who knows? All i know is that there is so much that i am missing out on.
I looked up baby's milestones at 7 months old and this is what i found:

Your baby now can bear weight on his legs when you hold him upright.
He can sit without support.
Baby can stand while holding onto someone or something.
He can pull himself up to a standing position from a seated one.
Baby walks by holding on to furniture.
He babbles.
Baby plays peekaboo.
He plays patty-cake.
Baby waves good-bye.
He can say "mama" or "dada."

oh sweet brenham i would love to be playing peek-a-boo with you right now and hearing you giggle. I wish i could watch you wave bye-bye to daddy when he leaves for work. And most of all i wish i could hear you call me "mama".
love you baby!

I have a bag full of solution and a drain bag. The full bag gets put up on an IV pole and slowly drips into my stomach (peritoneal cavity) through the tube. Its 1500 cc's or about 3 pounds of fluid that goes in (so i got a little tummy bloat going on!). that fluid sits in there for about 4-5 hours during which it draws toxins out of my body and then i drain it out using the same tube into the drain bag and start all over again by putting another bag of solution right back in.

bag of solution

drain bag
I do that process 4 times a day and it takes about 20 minutes. Pretty simple concept, but i think it is all pretty amazing how that works. but there was a lot to learn. And it takes a lot of planning. I always have to make sure i am home on time to do a treatment. But its WAY better than going to the dialysis center.
So there you have it. Do you feel smarter now that you know all about PD? Hopefully it is all useless knowledge to you and you never have to use it though!

******************************************************************************

Thank you for all of your sweet comment on sweet brenham's video, they mean so much to us. He is so special to us and we are touched that he is to you too!

It was time for a little make-over!! What do you think?

Patrice, thank you so much for creating my new blog design!! I love it!
Check out her other designs here!

i have been a bad blogger lately, sorry for the lack of updates. It was a busy week around here.

Mindy and Kyle got back from Mayo on Thursday. She was not approved on the spot like we were hoping b/c one of the tests didn't go as well as they hoped. So she is going to re-do that test here in Michigan sometime this week hopefully and if her score is better this time, her case will be brought to the board at Mayo and she will be approved if everything else looks good. And then we schedule transplant!! whoo-hoo. Please pray that this test goes better and that her score is right where it should be.

I try PD again tomorrow. I REALLY want this too work, i refuse to go back to the center for a third time. If it does go well, i should be home free (literally) until transplant. Thanks for all of your prayers!!

My sister Mindy is at the Mayo Clinic this week getting her donor evaluation testing done! Eek!
Please pray for her and her husband Kyle as she goes through the different tests and that she will be healthy and ready to donate. We are hoping that if she passes we can schedule the surgery soon! It seems to good to be true, things might finally be turning around!! Please pray hard.

~thanks mindy for doing this for me! I am so lucky to have a sister like you. love you

I was reading through my old posts today and realized something.....i am a prayer hog! Asking for prayer about something in almost half my posts!!

So in return I would like to pray for you, leave your prayer requests in the comment section and be assured you will be lifted up in prayer! So let me have 'em. big or small. they all matter.

I think this will be great.

After waiting for the doctor for almost 2 hours (luckily robb was there to keep me entertained) he told me it's not a hernia, if it was he would have scheduled another surgery right there, but he is not sure really what it was. Something about air escaping into somewhere it shouldnt have. I don't know, the way he explained it sounded much better. So I still have to take it easy for the rest of the week and no doing PD until a couple more weeks. Which i am not happy about but at least its not another surgery. Your prayers worked! (finally:)


P.S. Thanks for all the b-day wishes!!

eatin'

paddle boatin'

fishin'

soakin' up the sun!
thats about all we did. oh and i slept a lot too but sorry, no pics of that!!! It was a great time.

Thanks everyone for your great suggestions and prayers. Things are going a little better, the swelling has gone down. When i talked to the dr. over the phone on monday afternoon he said it sounded like a hernia and to lay low until we know for sure. A hernia? what??
He thinks i have probably had it for a while and it just never flared up until i started PD because PD works by putting about 3 pounds of fluid in your stomach and letting it sit in there for 4-5 hours, taking it out and then putting more right back in again and this flushes out the toxins. Anyways, he thinks that if there was an underlying hernia that the pressure of all the fluid made it come to the surface. I have an appointment today at 12:30 to find out for sure what it is and what we do about it. I will let you know!

I now have a greater appreciation for those who have to be on bed rest, i am laying in bed all day so far and its only 11:00. As long as i lay flat the swelling doesnt bother me as bad. But it is so boring....anyone have any ideas to keep me entertained??

problems. I might need surgery AGAIN.
Friday i was released to start up PD and it seems to be working fine this time, BUT my whole stomach has swelled up like a balloon leading the PD nurse to believe i have either internal bleeding (less likely) or there is a leak somewhere in my stomach where they did the surgery so its filling up with fluid. GREAT. I am waiting for my dr. to get in the office and set up an appt. and see what he says.

So in the meantime could you pray that this is nothing and i don't need another surgery within the same week as my last one. I cant understand why i can't catch a break. I am afraid to say that at times the devil seems to be winning this fight. Why won't he just leave me alone???

2 to 3 tablespoons olive oil
1 medium onion, chopped
1 medium green pepper, chopped
2 tablespoons garlic salt
1 tablespoon salt
1/4 teaspoon pepper
1 can (6 ounces) tomato paste
4-5 fresh tomatoes from the neighbors garden! chopped

Heat oil; sauté onions, and pepper in the oil until tender. Add garlic, salt, pepper, tomato paste, and tomatoes, Simmer for 30 minutes, stirring occasionally.

The Verdict: So good!

Wow, that's a lot of blogging, to celebrate, here are 101 facts about me!
1. I started dating robb when i was 15 years old.
2. We got married when i was 20
3. we totally gutted out our house and redid it all before we were married.
4. it took two years to complete
5. my favorite color is orange
6. i love to sleep
7. i have never had a cavity
8. i have never broken a bone
9. i love to decorate
10. i am very ticklish
11. 11 is my favorite number!
12. i have been in two car accidents, both not my fault
13. i got pulled over by a cop last week on my way home from work for a burnt out head light!
14. i hate to exercise so i just dont do it
15. i drool when i sleep, haha
16. i love my robot vacuum
17. i love music
18. i swam with dolphins
19. I love going on vacations
20. every time i see a sunflower i think of my grandpa.
21. i love fresh fruit and veggies.
22. i wish i could sleep in late everyday
22. i am on the computer more than i watch tv
23. i love reality tv
24. i'm addicted to love!
25. i'm a cuddler.
26. i prefer hugs over kisses.
27. fall is my favorite time of year
28. when i was a little girl i always said that i wanted to marry my dad , lol
29. i always wanted to be a young mom
30. brenham was conceived on our 2 year anniversary, i know TMI!!
31. i wear contacts
32. i had braces
33. i love playing games
34. i almost always sleep through thunderstorms
35. i take over 25 pills a day.
36. i love coffee
37. i love to eat out
38. cotton candy is my fave
39. i hate to do housework but once i start i cant stop until its all done.
40. i scrapbook- but i am very behind on it
41. my closet is color-coded.
42. i love to shop
43. i am a bargain hunter.
44. target used to be my favorite store until i realized that is where all the preggy's hang out
45. i love accessorize my outfits from head to toe.
46. i just roll out of bed before i go to dialysis, no makeup, no doing my hair, nothing.
47. mascara is a must have for me
48. i have way too many shoes.
49. my pet-peeve is bad drivers
50. i have never shot a gun but i am a pro at duck hunt on Wii
51. i love to be barefoot
52. i check my email at least 5 times a day.
53. i hate clutter.
54. i love watching movies
55. i always day-dream about the future
56.i want to write a book someday
57. i love pictures
58. i dont eat potatoes
59. ice cram is my love.
60. i have the cutest dog ever.
61. my dog is named after a character on "dawsons creek"
62. i love my hubby more everyday
63. i am a list maker. i make lists for everything.
64. i love getting massages
65. i dont mind going to the dentist.
66. i bite my nails when i am bored
67. stress makes my hair fall out.
68. i like scary movies
69. i cant wait to meet my Savior.
70. i love meeting new people.
71. robb spoils me so bad and i love it
72. i have a large collection of purses.
73. i have horrible hand-writing
74. i love getting mail.
75. i am very competitive especially with my dad
76. i cant go without breakfast
77. i snack all day long
78. sunday is my favorite day of the week
79. i have 2 sisters and 3 brother in laws
80. i love giving gifts to people.
81. i love to cook i just dont do it very often
82. but i hate to bake
83. i wish i had a maid.
84. i played basketball and volleyball in high-school
85. i have had 5 surgeries in the last 5 months.
86. i get really excited just like my mom when my flowers start to come up in the spring.
87. i have never mowed the lawn
88. i tried learning to drive a stick shift but ended up in tears.
89. i was voted "best eyes" in high-school
90. i had a hot air balloon ride
91. i want a tattoo in memory of brenham but i am too scared so i probably wont
92. i took 3 years of Spanish in high-school but hardly remember a thing.
93. i have always wished that robb could play an instrument and sing to me, wouldnt that be cute
94. i cant draw at all.
95. my birthday is next week Thursday
96. i feel way older than i am sometimes
97. i want to build our next house.
98. i weight the same right now as i did in 8th grade
99. sometimes when i cook i talk out loud and pretend i am doing a cooking show!
100. i am very forgetful
101. i am blessed.

Surgery went well. The nurse got my IV in the first time, woot woot. We prayed for that!!

The pain was horrible yesterday, but its getting better. I have an appt. with the PD (peritoneal dialysis) nurse on Friday to make sure it works and then hopefully i can get going with PD again.

my surgery is tomorrow at 1:30. Hopefully it works this time and I'll have a painless and speedy recovery!

Hope everybody had a nice Labor Day weekend, we sure did. More on that later!

I have 2 parents and 2 sisters that are negative cross-matches for a kidney for me!! (negative is good, remember!)

How's a girl to choose??

We are praising God for this wonderful dilemma!!

PLEASE not another sweet baby taken too soon.
I can not believe it.
My friend Nicole found out last week that the baby she is carrying has either trisomy 13 or trisomy 18, both fatal chromosomal abnormalities. She is being so strong through all of this but i know she needs your prayers. I know Nicole's heart and how badly she wants this child. Please pray for healing and if not, than for peace as they travel this painful journey. Check out her new blog and send her some love by letting her know of your prayers.
I knew i could count on all of my faithful blog readers to be on your knees for her and chad! You all are the best.

As you all know last night I was struggling and felt the need to write about it. Well after I posted that I found myself awake during the very early hours this morning searching my mind for memories but I wasnt sure how to do it. Just when I was about to end my efforts I checked my email and to my surprise I had an email sent to me from one of my nurses that cared for me after brenham was born. She went on to to tell me all the precious details from that day that she remembered. That was what I was searching for and that was what I was waiting up so late to hear. How is it that she was up that late and happened to read my entry from just a couple hours ago? God heard my cry and knew just what I needed when I needed it most.

Then this afternoon another blog reader called me and told me about a speaker who was talking at a church nearby about his journey of grief. She thought it would be very beneficial to us. So when robb came home from work and we sat down for dinner we discussed it and we agreed to check it out. Before we left for the seminar while robb was cleaning up the kitchen (bless him!) I felt led to write to Kathy and her husband who recently lost their daughter Grace in a tragic event. They have been heavy on my heart since I first heard of their loss. I dont know Kathy well (although she did help us plan our honeymoon) but I do know her heart and how it aches for her daughter, so I wrote her a letter and emailed it to my husband so he could print it off when he gets to work tomorrow. I finished it up just as we were ready to leave.

As we drove to the church I told robb about the letter and we talked about Kathy and Brian the whole way there. I remember he said something like "God is using you to help other people through similar struggles" I dont know if that is true but I just felt like I needed to do something for them.
Once we arrived we sat down in a pew and I scanned the room and you wouldnt believe who I spotted....Kathy and her husband. I thought for a moment about what to do, should I introduce myself, should i say something, will she remember me? It didnt take long for me to remember what I would want someone to do to me. As I walked over to her and her husband I practiced in my head what I was going to say, but once my eyes met hers my plan went out the window, she recognized me too and reads my blog as well and our mommy hearts connected as we hugged each other. I can feel God moving in my life. He has not forgotten me and knows the longings of my heart. He has proven that in ways I never thought possible today.

I miss brenham so much lately, its seems like forever ago that i held him last. As a way to remember him i often ask robb to tell me about brenham and the story of his birth, what he remembers about it. I have been doing this since day one but lately the story has become shorter and shorter and the treasured details have escaped us. I wanted to remember every detail of him, every minute of his arrival, but i don't. And that makes me miss him so much more. Why cant i recall those precious moments? They were all i had, and i want them back.

I have been tagged to tell 6 random things about myself.

Ok, here it goes:



1. I am deathly afraid of monkeys. All types. I am not sure what it is about them maybe the evolution, humans evolved from monkeys thing, or that they are scary smart or what, but i hate 'em.



2. I am a human compass, i can always tell what direction i am facing, even if the sun isnt out. Weird.



3. I hate it when my food touches each other. you know like when your applesauce runs into your dinner roll, hate that. Those Styrofoam plates with the divided sections are my best friend at pot-lucks!



4. I am the total opposite of a pack-rat. I throw away everything (unless it somehow reminds me of brenham or of when i was pregnant with brenham), On one of my binging episodes i almost threw out my high-school diploma, b/c i dont really NEED it, but i thought better of it.



5. I love polka-dots! ( i know thats random but i am getting desperate here!)



6. hmm, one more......okay, i really didnt want to put this but i am out of ideas.

:takes deep breath:.....

I havent showered in 153 days now, only baths until i get the port in my chest taken out, oh that will be a happy day. If you live close by you better be ready that day, i might shower at your house once the hot water runs out here. yeah, it will be that long!
***updated 11/15/08***
I am showering regularly again!

My surgery is NOT tomorrow, it's just a surgery consult. I misunderstood. Bummer. I am ready to get it over with but at least this will give us more time to pray about it! Sorry for the confusion. And thanks for all of your well-wishes.

It didnt work. and it was painful. and now i have to have surgery on thursday. and i have to go to dialysis for the next 2 weeks. Enough said.

My appointment didnt go well, she thinks the tube has migrated some where up by my ribcage and it is supposed to be down by your pelvic bone. She said that this very rarely happens, but of course it has to happen to me, it hasnt even been a week since i started. why couldnt i at least have gotten a couple months in? i am so frustrated. just when things were beginning to look up this has to happen. i should know better by now that things never go good for me. welcome to my life.

so now i have an appt with a radiologist at 3:00 to get an x-ray to see if thats for sure the case and if it is they will put a wire through my tube to see if they can get it to move into the right position. if not i have to go back on hemo-dialysis (noooo) and wait until i can have surgery to fix it. so if anyone reads this before 3:00 please pray that this works and that i wont need surgery or go back to regular dialysis. And also pray for my attitude i am very discouraged and feel like giving up. thanks.

My new port isn't working :( and hasnt been for the last few days. I have been talking back and forth with the nurse all weekend and tried everything but i havn't had any luck. So tomorrow i have an apportionment with her to see if we can figure it out. It is possible that the tube has gotten lodged up against something in my stomach and i may need another surgery to fix it. Ugh. I am so frustrated. Please pray that it can be fixed with out surgery asap. I dont want to have to go back to regular dialysis.



P.S thanks for sharing in our joy and for all of your sweet comments on my last post, i love to read them!!

And playing some mini-golf (i'm getting pretty good dad!)


(....shhh)

And we even splurged and got aqua massages!!

ahhhhh

Tomorrow we have a meeting with a dietitian and a social worker and then one last appt. with the dr. That will complete the transplant evaluation and we hope to be heading home around 4:00! Please pray for safe travel back home!

Today I completed by 59th in-center dialysis treatment. Tuesday is my last time, WOOT! WOOT! Then on Wednesday, Thursday, and Friday i have training for home dialysis and then i am on my own!!
Yesterday was a long day for us, lots of waiting in between appointments, we got pretty bored:
At night we ate at Red Lobster and then went shopping at a strip mall close by, we went to a TJ Maxx (thanks for the suggestion sarah) and found lots of good deals, i love a bargain!! (we did not buy these)
Then of course we had to get back to the hotel for opening ceremonies of the 2008 Olympics! And i really want to post the video i took of robb last night while he was sleep-talking, (it was hysterical) but he wouldnt approve. (hehe)

Nothing too exciting going on today, just dialysis this morning and we might try and find a movie theater later tonight!

Thanks for checking in, keep praying that robb's blood will be compatible!!

Today we had a transplant education class followed by a meeting with the transplant coordinator. And now i am waiting for an ultrasound.
We have been given so much information over the past few days and i will try to tell you what i can about what has been going on.
First of all, i did receive the same diagnosis (IgA nephropathy) as i did in G.R. which is kinda of a bummer but the good news is the doctors here dont see any reason to wait until March for a transplant like the doctor at st. mary's wants to do. Yipee!
So these past few day i have been going thru the evaluation process to get on the donor list here also. It is the same testing as i did in G.R. that took over 2 months to complete and is only taking 2 days here. We have kept very busy. Potentially if we find a live donor with a negative cross match i could receive a transplant with in the next few months here!!!
Also we learned tons of new info on the antibody stuff. The surgeon we saw is a super genius and told us about some new cutting edge treatments and medications that can lower your antibody percentage if my blood is not compatible with any of my possible donors. Great news!! We hope that isnt necessary but just in case it is a huge relief knowing there is an alternative!! Click here for more info on that.
At the end of this month my case will be presented to the transplant committee and hopefully i will get approved and be put on the deceased donor list in Minnesota as well as in Michigan.
If i were to get a transplant here i would stay for 3 weeks and then return after 2-4 months and once a year there after. They will watch me like a hawk to be alert for returning IgA in the new kidney.
Robb will be tested today to see if he is a negative cross match as a donor for me....PLEASE PRAY that he is!!! (negative cross match is good, seems weird) We will get a call on Tuesday for the results. PRAY! PRAY! PRAY!
God is good!!

Hi all~
I had my first appointment today with the doctor. It went really well, everybody here is so nice and helpful. We dont have a lot of information as of yet but are working on getting some more testing done before we know too much. I have another appointment tomorrow where hopefully we will know more. I also have dialysis set for tomorrow afternoon. Please continue to pray for good news!

Our drive went perfectly, and robb got us here right on time and safely arrived at our hotel where we are now relaxing. Thanks so much for all your prayers and well wishes. I will keep you updated.
Here are a few pics from our drive:

Robb cruisin along!

chilling in my "bed" in the back of the car~pretty cozy

Keep prayin'

Robb and i are taking off for Minnesota tomorrow (tues) right after i am done at dialysis. We are excited and nervous at the same time. Excited to finally get some peace of mind on the route the doctors have chosen to go and nervous for what the outcome may be ( i keep having dreams that they tell me something worse). Please pray for safe travel and for the best possible outcome. I will try to keep everyone updated so keep checkin' in!! My first appointment is at 9:00 Wednesday morning. Thank you so much for your prayers.