Friday, August 29, 2008

How can that be?

It's been six months since our sweet baby boy went to be with his Heavenly Father. Some days it seems like it's been longer, we have been through a lifetime of pain within six short months. But other times it seems like just yesterday, the hurt is still so raw.
Baby, we miss you and talk about you everyday, you will live on in our hearts forever.

Wednesday, August 27, 2008

Inny Minnie Miny Moe

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!!

no, not another one.

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.

Monday, August 25, 2008

Let me tell you about my day

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.

Sunday, August 24, 2008

I don't remember

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.

Friday, August 22, 2008

Tag...Your'e it!

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!

Wednesday, August 20, 2008

Correction

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.

Monday, August 18, 2008

@!?$%&#!

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.

Ugh

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.

Sunday, August 17, 2008

Prayers Please

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!!

Wednesday, August 13, 2008

to Him be all the Glory, Honor and Praise

We have good news!!



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!

And....


I am done with hemo-dialysis!!!
Whoo-hooo! Let's Celebrate!

Sunday, August 10, 2008

Mall of America!!

We had a great time today at the Mall of America, we didnt do much shopping (lucky for Robb) but had a ton of fun anyways.
Here we are on the Log Chute ride:





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!


Saturday, August 9, 2008

59 down...1 to go!

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!!

Friday, August 8, 2008

More mayo news!

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!!

Thursday, August 7, 2008

Mayo Clinic





These are a few pictures of some of the mayo buildings (its huge) and our hotel. We are so glad we came here, we are learning so much and received so much information and our hearts are being filled with hope. Everyone here is so nice.

Yesterdays schedule included meeting our doctor, a chest x-ray, blood work, a 24 hour urine collection and an EKG. After my appts. we headed in Minneapolis to pick up a pontoon boat that my dad bought and then had dinner at my all time FAVORITE restaurant (which used to be close by my home town but they closed down right when i realized how much i loved it!)

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

Waiting~

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!

Tuesday, August 5, 2008

We're Here!!

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'

Monday, August 4, 2008

Destination: Mayo clinic

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.