Transplant morning

Chey still peacefully asleep the morning that she is getting mommies kidney

Jessica the morning of her transplant surgery

Its been a really long while

Ok its been a while since I have updated this, sorry during the holidays it gets really busy. Anyway everyone knows shes been on the list since Oct. Well on the 17th of Dec we finally got the phone call but before we could actually leave about a hour and 15 min after the first call they tell us sorry its not a good match for her so we were at a loss for words it was a dissapointment. But we got through Christmas and New Years and the family had so much fun. And then In Dec we were told that Chey finally gets her wish. We were so excited so this month in Jan were doing her wish.
We as a family are all going up to Boise on monday and staying in a hotel for 3 nights then she gets to go on a $1000 shopping spree the next day then red robin for lunch and we are going to have a pizza party dinner and meet the company that helped her get her wish. And like we were told the shopping spree isn't even the biggest part its what everyone else is doing with the free gifts and surprises so we are very very excited and I will post pics when we get back because I'm taking lots even while shes in the store shopping. plus she gets a special guest while she shops at toys r us can't wait to find out.
Ok update on therapy the kids are doing so wonderful Chey can walk short distances with even stopping and not diving they are controlled and she is improving everyday. T is getting stonger everyday he is learning to pull to stand and he will stand on his feet instead of just wanting to sit all the time. he is learning to go up and down the stairs which is scary and cute at the same time, and his newest favorite thing to do is throw stuff and I mean everything. so its a challenge. Chey is as bossy as ever I tell everyone its amazing how bossy they can be when they cant talk. I am so proud of my kids they are doing so wonderful. well its late and I'm going to be ttyl

Great news

yesterday in the mail was the best news ever Cheyenne is now on the transplant list at last. It brought tears to my eyes I was so happy. The kids are doing great chey is walking short distances by herself and shes doing wonderful in therapy and preschool. T is trying to get on forarms and knees and standing is getting so much better. I am so proud of them they are doing so good. Doc appts are doing good to monday we have the dreadful blood work but that is part of our lives now and will be for a long time. well just wanted to share our great news and now just waiting on the phone call to say its time......

Our bsu boy!

this is the hat hair that jeff wore to the game he looked so cute wearing daddys hair but he hated to touch it with all his sensory stuff he has going on but he has gotten better. just thought it was a cute pic and wanted to share it.

Chey in her new bed

after the girls flooded the kids bedroom we had to take there beds apart to dry out the carpet. Let me tell you that was a pain and it smelled but its finally going away. Jeff and I decided to upgrade the kids cribs into beds, so they didn't have minnie mouse but we got the next best thing for chey her dora bed which it still works with her table and dialysis its just on the opposite side.

T in his new big boy bed

He was so excited about his bed Jeff was to I on the other hand was nervous since the only thing he can do is army crawl but Jeff was right again which is always a good thing. the first night we didn't make it the whole night he was over by his sisters bed and then the next was better and he seems to be doing alot better than I thought he was going to. And now he has made it a game that he can sit up so when you put him in bed and lay him down he sits right back up. Its very cute but once I gave him his bottle and layed him down he stayed. He even tried sitting up by himself today when he was on the floor very impressive. Also I had him up against the couch standing he did really good I would say almost if not 5 min and then got made when he fell over. well he goes back to therapy tomorrow.

Fair time... She had a blast

She had so much fun we looked at the animals and went to the booths and then she rode on the kiddie rides all by herself. She also went on some rides with daddy and Dakota and Dest, The apple (spinning one) the farris wheel, roller coster, carasell, and another one that I can't remember. Daddy also let her do a rubber ducky booth that everyone is a winner and she got a blow up hammer. It was a wonderful day then we watched the bsu game! Fun family day.. everyone was pooped when we got home.

T enjoying his elephant ear

T loved this it was his first time having it and he would just knaw on it then he actually put the whole thing in his mouth it was so cute but then had to watch that he did't gag himself. He had fun at the fair but wasn't a big animal lover. He did't go on any rides cause he would have fallen out of the chair and I think that it might have scared him to. He did fall asleep while chey was riding but then we went over to the jeeps and they have horns on them and that was the end of that nap and he wasn't happy after that. which we left shortly after. when we got home daddy put him in his bsu outfit and we were off again to go watch the game at a friends house. He had fun but wasn't a fan of there dog. ( they scare him and he won't touch or go near them). fun fun day!

Her new bear. Just got into pre-op

another bear to add to the collection. by the time shes done she will be able to open her own shop and sell them :0). We had just gotten done with t's blood work and went to surgery then they brought us back to pre-op where we got this very cute pic of chey and her bear. she was a very good girl.

Chey in recovery

She looks kinda lost but actually today was the best wake up that I think I have ever seen her. And the doc had already given her pain meds so she was doing really well until it was time to go and the nurse took out the iv and all the sticky things with wires on her chest and side, then she was angry and did't want to cooperate at all until I picked her up. She ate some fruit snacks and drank water then on the way home she had 4 chicken nuggets, then she fell asleep on the way home. it was a pretty quiet drive they were both asleep most of the way home and he slept on the way up there. now were home.

were back again.......

We are back again. Chey had another surgery and wait for it........ was a sucsess yes!!!!! Everything went right, when we finally got back into preop she and tristan did wonderful she went back with no problem and came out probably 45 min later. She was more alert waking up and not in as much pain. She never made it to upstairs they sent her home after recovery. The amazing thing we left and there was still light outside. So now instead of 2 tubes she has a button (newest) for her feeding tube and then the dialysis.
We have gotten in all the paper work for her transplant we are just waiting on the doctors to review it and let us know she has been put on the list. On the 22nd both Chey and T go to the eye specialist and then to the kidney doctor. Chey to the kidney for her monthly check up with all docs and T is to find out how his kidneys are functioning. Cause we never knew when Cheys started going down hill.
Both kids are doing wonderful in therapy T is standing more at home with support and at therapy and his therapist is working on getting him his own gait trainer. (I believe there is a pic of him on the blog in a pink one) and it will be his to keep. Hes not as strong or walking for a walker like cheys. Cheyenne has been walking everywhere in her walker, stores shopping doc appts. Its wonderful to see her doing it and she is starting to explore more with it. She is loving her preschool and I will be starting to work with her more at home on it with T as well. Should be fun I'll keep you posted. I will post pics as soon as she will let me get a pic of her new button. ttyl