Friday, August 29, 2008
Wednesday, August 27, 2008
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.
Monday, August 25, 2008
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.
Sunday, August 24, 2008
Friday, August 22, 2008
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!
I am showering regularly again!
Wednesday, August 20, 2008
Monday, August 18, 2008
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.
Sunday, August 17, 2008
P.S thanks for sharing in our joy and for all of your sweet comments on my last post, i love to read them!!
Wednesday, August 13, 2008
Robb is a good match!!
It's not a perfect cross match so we'll still test out my family to see if one of them is a better match but if not it would be good enough!! Praise God for this amazing blessing!
I am done with hemo-dialysis!!!
Whoo-hooo! Let's Celebrate!
Sunday, August 10, 2008
Here we are on the Log Chute ride:
And we even splurged and got aqua massages!!
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!
Saturday, August 9, 2008
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!!
Friday, August 8, 2008
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!!
Thursday, August 7, 2008
It was sooo yummy!!
Today we had breakfast at the Pannekoeken dutch family restaurant( so good, thanks for the recommendation amanda)
Then we met with the doctor again, had more blood drawn (16 viles!!) Had lunch at the cafeteria( we ate lunch there yesterday too), met with the surgeon and i am at dialysis right now. After this its time to head back to our hotel room, and rest. We are planning on ordering room service for dinner, yeah we are high rollin' here!!! lol! And later tonight there is an art fair in the plaza next to our hotel that we might check out! Thanks for checking in and we have felt your prayers in so many ways both large and small...thank you so much!
Wednesday, August 6, 2008
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!
Tuesday, August 5, 2008
Here are a few pics from our drive:
Robb cruisin along!