Day + 64

I know I probably sound like a broken record, but please say some prayers for Amelia! Her counts and all are doing good and we thought we were on the tail end if this dang hemorrhagic cystitis, but she started having big clots and just about every time she goes to the bathroom!! I know the doctor said this could happen but she is so disappointed. We have an early appointment at clinic tomorrow morning and she is worried she will need blood because of the heavy clots!! Please help us pray this all away! everything else is doing great. She gets stronger and stronger every day. She was climbing up on the jungle gym and then sliding down. She stays up all day long and does a lot of walking. I thank God everyday for the blessings He has bestowed on me and my family!
Blessings,
Kelly

Day + 60

Some Pictures....

Amelia and her Giraffe AKA Elvis! lol

This is Monday night Go Carts....



This is Amelia coming down to ride the go carts!

Day + 59

We went to clinic today, she's doing pretty good. Still having blood clots. Her counts for today were pretty good. We received red cells today her hemoglobin was 8.0 today. Her white cells were 7.4 platelets 47 and ANC was 4.4. They gave red cells because of the bleeding in the bladder.
This weekend, I had the opportunity to go to the U2 concert that was held a few blocks down at the U of M stadium. It was pretty cool till it started to rain, I took cover, I'm not a fan of being wet fully clothed. Sunday we went to church at the Basilica of St Mary, then took a ride out to Cabela's which is where she wanted to go. Dad and Marshall arrive sometime on Wednesday.
I have some pictures to upload tomorrow. For now I'm heading to bed for hopefully a few hours of sleep! I'll write more tomorrow, just wanted you all to know how she was doing!!
Thank you for your continued prayers.
Blessings,
~ Kelly

Day + 53

We are still here trucking right along. We had clinic yesterday for counts and metabolic panel. Counts looked great! WBC were 8.0, ANC 4.8, platelets 36 and HGB 10.3. Her platelets are doing pretty good as she has not had a platelet transfusion in about two to two and half weeks. Her creatinine creeped up a bit to 1.30 it had been running in the normal range, but I think she kinda got a little dry. For some reason her IV TPN didn't run all night long, plus she had her lasix, that morning before clinic. So at clinic they ended up giving her some fluids and then we had to go in today to just check the creatinine and it was down to 1.00, which was better and we are hoping that by the time we go back on Thursday it will be back in the normal range!
We are still trying all kinds of things to see what we can get her to eat! She has been eating egg salad and vanilla Ice cream just a little of both though but at least it is a start!
She is still having a blood clot here and there some big some are small. They are really painful. The urine color looks much better, it was actually yellow! Never in my life did I ever think I would be praying for yellow pee!!! Not just once but twice!! The things you celebrate here in the transplant world!! We have the day off tomorrow from clinic and we will retun to clinic on Thursday, we will see Dr Wagner.

Please continue to pray for Amelia and her bladder and that these clots stop coming and that the bladder heals and that her eating gets better and better and last but not least that she remain fever free!!
Blessings,
~Kelly

hopefully soon I will get some pictures and get to put them up on here!

Day +50

Day 50!! yeah we are half way there! I pray so! today was a good day, she did lots of walking and no napping! Still just nibbles to eat, praying she will get better at eating. Tomorrow she promised she will eat more. Also no blood clots, teeny tiny ones and when I just changed her pull....it was yellow!! No blood, I looked at her and asked maybe we could pray it to stay that way! She said that would be wonderful!
We have 50 more days left for sure in Minneapolis...praying it is not more! Well at least we are at the half way mark, We have clinic on Monday morning at 8:30 praying that her counts continue to climb and climb! Not sure how many days we will have off from clinic, but we will go back to clinic for sure on Thursday, we will see Dr Wagner that day. Well I am heading to bed if I can get Amelia there!! Night, Night!
Blessing,
Kelly

Day + 49

We went to clinic this morning to check the hemoglobin, if it was 8 or above we wouldn't do anything for the weekend. Well her HGB came back at 7.9 so it was an infusion of red cells for her. That lasted all day!! That is pretty much how we spent the day, which it was a miserable rainy Friday. Tomorrow will be day + 50 which means we are half way there to going home. I pray things improve before then mainly this damn hemorrhagic cystitis!! Tonight at dinner she had to come upstairs because she had a blood clot and it wouldn't pass...thankfully it finally did and she has been laying down ever since.

Opps she just went to the potty and passed another one. Please pray that this gets better and that these big clots stop. They hurt her really badly!
Gotta run to help take care of her and hook up her nightly TPN....
I'll update more this weekend as I can.
Blessings,
~Kelly

Day +48

Today we woke did our morning meds and unhooked from the TPN (IV nutrition, because she is still not eating) got dressed and headed out the door to be to clinic for about 9. We did our blood work and went into a room to see the doctor. She did a quick exam asked a bunch of questions and that was it. She said she would like us to come in really quick tomorrow for a CBC since they do not have clinic on weekends any more. She said she would go ahead and order some red cells just in case her hgb drops a bit, I think it was 8.2 and she just didn't want her to go until Monday morning if her hgb was going to drop. We were in and out of clinic in a flash today. Then we came back to the RMH to chaos, they were getting all new beds so all the old beds needed to be stripped and taken apart an the new ones had to be delivered and set up...
Amelia is doing fairly well, other than she doesn't want to eat very much. They are going to stop her lipids over the weekend (Fats and protein) to see if that will help her get hungry. She still hasn't found much that she likes to eat. I think tomorrow or Saturday we will go and get her a cheese burger from McDonald's with out Mustard and Ketchup, those burn her mouth. We tried Taco's from taco bell...I am at a loss at things to try. She did drink about 4 or 5 ounces of a caramel frappy this morning. Her counts look great: WBC 6.8 ANC (I think 5.?)HGB 8.2 and platelets were 33.
She still has hemorrhagic cystitis which has it's good days and bad days..some days she has a lot of clots and bleeding and some days she is not that bad. Please pray that this goes away soon!
Well I have to go and get her ready for bed, she is staying awake more and more each day, today she has been up since 8:30 this morning and I think she may have had about a half hour nap all day. She was in a great mood today giggling with us and making jokes!!! That's the way I love to see her!!
Thanks for checking in on us and keeping us in your daily prayers they do mean a lot to us!!
Blessings,
Kelly

Day + 47

Yesterday we had a clinic appointment and were there all day. Her counts dropped a bit, but nothing to be alarmed about as that is part of transplant and when we go back on Thursday we pray that they will be up a bit higher (white cells anyway). She still has hemorrhagic cystitis. It also has good days and bad days. Poor thing has been passing some really big blood clots...like the size of quarters. Please pray that this hemorrhagic cystitis gets better soon! She hates to have to be walking around in a pull up but she still doesn't have much control over it and is on a lot of fluids.
We have the day of from clinic, so we are going to try and get her to eat something!! She ate a little bit the other day and yesterday nothing...:( hope she picks back up soon! Well going to run and try to make her some scrambled eggs...then she said later she would like to try a chicken quesadilla from Taco bell...
Thanks for keeping us in your prayers they are appreciated and very much needed.
Blessings,
Kelly

Amelia's new do....

Day + 44

Today started out as a gloomy, wet rainy Sunday morning...but that soon turned to Sunshine!! I got the word that we have been waiting for... She has been released from the hospital!!! We are at the Ronald McDonald House tonight as one happy family! Tomorrow we go to clinic. I hope to update more tomorrow... Today has been a very busy and stressed day.

Blessings,
Kelly

Sent from my iPhone

Day + 43

Same ole same ole here, just wanted to check in and give a quick update. Amelia is doing pretty good, counts are doing great. She got another fever on Thursday at 3 am so that bought us another 48 hours in the hospital. She has them every other day. It's very frustrating and aggravating. Of course she gets disappointed. She has been doing great with her pills! She leaves every day around 3 pm for pass and we come back in at 8. I did my class for her IV nutrition and passed with flying colors, the nurse said I had a gift, lol I told her I was thinking of going back to school to be come a nurse!! I've had a good bit of training. Any way we don't know when we will leave the hospital for good if only the fevers would go away and stay there!!! I told Amelia let's aim for Halloween, that way we won't be disappointed till.......October 30!!
Well that's all I have for now.
Blessings,
Kelly

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Another photo of Mimi at the RMH

Amelia heading out on a day pass!! On day + 40

Day +40

Never mind...we are still here and we just may be for a while longer! She is doing fairly well. Just the damn fever that comes either at midnight or 8 in the morning! It is just so frustrating!! She is a little better mood today and not crying as much. I just don't wanna see her get depressed!! We are going out again on another pass. I don't see us leaving the hospital on Friday.... The doctor just came in to talk to us he said he would be happy if she could go 48 hours with out a fever....SO WOULD I!!! Her counts are great! She hasn't had blood products in I think it's been about 3 days. Her bladder is about the same some times she will have blood others there is very little......and in case I never mentioned it before...I hate roller coasters!! Never have likes them never will!!! I will try to let you know tomorrow how things go!
Blessings and thanks for checking in on us!
~ KELLY

Day + 39

Greetings
asking for a special prayer for Amelia tonight...her fevers were 100.3 so if they stay down tonight and tomorrow and she can keep the pills down we get to get out of the hospital by either Thursday of Friday morning!!! Please say this prayer with us she is wanting this more than anything else in the world! I will update more tomorrow!

Day + 37

Today we had a day pass!! She still had a fever at 8 am!!! UGH so frustrating, but still she got to get unhooked from Fred ( her IV pole ) and go to the Ronald McDonald house for a few hours! She was very sad when we had to bring her back and she was begging us not to bring her back! But she wanted me to ask every one to say a special prayer for her tonight that she stays fever free so she can get out of the hospital!!! Going to bed at the RMH for some much needed sleep. I will update again tomorrow.
Blessings,
Kelly

Day +36

greetings,
It's a beautiful evening in Minneapolis or at least it looks so from the view of room 4122!! I'm afraid to give an update on Mimi, I'm afraid I might jinx her good steps forward! She went 24 hours yesterday with out a fever from midnight to midnight and it was 101.2 so in the BMT world not that high. I went to the ROnald McDonald House last night to get a good night sleep. When Nate and I arrived at the hospital this morning she was waiting in the lobby with out a wheel chair just her and Fred (her IV pole) Then she was up most of the day with a little nap here and there, but up for a good part of the day. At 4 PT came and worked with her a bit and she got on the trike and rode it around the unit like two and a half times. She is still wearing pullups and having blood in her urine almost like a light koolaid cherry color, she passes a few clots here and there. They are painful to her, but I told her at least they are passing. Please pray that this continues, praying for no fevers, for the blood to be less and less in her urine,for her to be awake more and more and for her to get up and moving more and more!! We will start to move some more of her meds to oral medicines. I am going to talk to the doctor tomorrow in rounds to see if maybe we can get a day pass for a few hours to go back to the RMH for a few hours, that might brighten her spirits a bit more. Thanks in advance for the continued prayers, I know He is hearing them and we are feeling them!!
Love, Hugs and blessings,
Kelly

When the world says, "Give up,"
Hope whispers, "Try it one more time."
~Author Unknown

When you come to the end of your rope, tie a knot and hang on. ~Franklin D. Roosevelt

I really feel like it was/is the Bumex! She is moving so much better! Two trips to the bathroom, one unassisted... Yes hospital life (after 3 sleepless nights) is catching up to me, but she is feeling better, we even just took a half lap stroll...walked unassisted! She's had one fever for tonight at midnight, same as the last two nights but it only got as high as 101!! Praying for better tomorrow...wait it is tomorrow...well better day today!! Now off to take a nap, since my alarm is set for 7:50am to stop them from giving Bumex at 8am....

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