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

Chey sleeping in recovery after getting her 2nd (larger) tube

Chey after her failed surgery

Chey playing in pre-op

Chey getting ready for her PEG surgery

Fundraiser flyer

Thought I would share this. This is the flyer that my dad and step moms group is putting together for Cheyenne. I thought it was really nice and it made me cry, makes me want to cry now. We feel very loved and special that people would go through so much to help us out its absolutly wonderful what people that don't even know you will go to helping someone out. Thank you to everyone who has kept up with our lives.

Fundraiser

This is the wording on the flyer that my dad also sent to me.

Daddy & T

I thought this was a very cute pic. Daddy playing on his phone and T just watching and looking at home and comfy in his arms. Jeff had worked with him on standing and I think this was a break point. But I still thought the pic was cute. Hope you enjoy it also.

Not feeling well

Sent from my iPhone

horse therapy

Chey had her first normal day in 3 wks and she was so happy.she did preschool at therapy today and was told she did awesome. shes our social butterfly. then we went to hippo therapy and she got to choose which horse she wanted to ride so she is turned around on diamond. she was tired but still did really well, which surprised me cause this was the first time i let her ride with out long pants on she still had her skirt shorts on. then after she went to play with her therapist with ot stuff and today it was picking up rubber bugs with tongs. she kept trying to throw them at her.

Sent from my iPhone

chey after getting off horse

here she is being held by one of the volunteers they just love her. diamond is in the back ground.

Sent from my iPhone

chey with diamond

chey with diamond and a volunteer she was very happy she had hippo therapy today. but it was a hot day it was 89 while we were there.

Sent from my iPhone

Chey had a rough day for testing

Today was cheys big day in portland for all her testing we went from blood work they had started out with 20 vials that they needed to get and got it down to 12. so that was the only good part they poked her 4 times and only filled 5 out of the 12. then we went from there to xray this was the only test out of the hole day she didnt scream in. they took a pic of her chest and hand then she had a ulta sound of her abdomen done from there went and had a echo and a ekg. Then we went and got the rest of her blood work done so after all the blood they took from her she was poked 8-9 times and she was very wore out from all the testing and screaming. the only test we didnt get done was the urine and that was because both times they put the bag on her upside down so we are hoping that we can go in monday and they can do that then send it back to portland. The day before it was just jeff and I until the 2nd to the last appt. so we sat through a 3 hour class that tells us everything that we are to expect out of a transplant and its better than being hooked up to a machine all night but I just wanted to cry. she has to take pills for the rest of her life and watch out to not get sick stay out of the sun cause cancer is worse after transplant cause of all the pills your on. the first year of pills we were told were $30,000 or more. Plus even getting a cold or any kind of infection is a risk of losing her new kidney once she gets one. so besides being disabled the poor child will never live a normal life. i just want to cry. during class you introduce your self and out of everyone and there family members that were there chey was the ONLY child. so that was even harded. I believe right now in the state of Idaho chey is the only child that is in kidney failure and on dialysis. well that was our trip to portland in a nutshell we will get a letter hopefully in 2 wks letting us know about how her trasplant eval went.

At home update

Ok so we got home friday the 15th and we had a family birthday party for cheyenne and she was so cute opening her gifts she had to make sure all the tape and paper were off every single thing. That night was her first night on dialysis at home, let me tell you between her machine and her brother for two nights I got no sleep. I think we have it figured out now on the machine going off at night for a low drain. So this is day 3 and this picture is her playing in the living room with her new barbies and barbie house that she loves. We have been doing good with everything she likes to fight me still on the cleaning of both her tubes and it kills me each time I have to do it to put her through all that but its either that or end up back in the hospital with a infection or something.

So tomorrow is our big trip to portland for her transplant evaluation and crossing our fingers that they dont need anything else for testing or just anything to get her on the transplant list in 4 wks after her appt. And crossing our fingers that she gets her transplant soon after that. No one should have to go through what she is especially a little one. She has adaptied to it and I made her a tummy thing with a pocket so we just tuck her tubes it there and sisters won't get courious or brother don't think its a toy and pull on it. Destiney is very good about letting us know if chey is stitting on her tubes or playing with them but I let the girls know that she knows what hurts her and she knows not to turn or pull anything. So Jeff and me we are just living day by day and not alot of sleep some days we feel like walking zombies. But we love our babies so I guess we will live. lol Well Im going to sign off hopefully this wasn't confusing and we are off to therapy for t.

day 2

Ok today was day 2 with dialysis and she did really good when we got her hooked up she put her mask on and didn't touch and left it alone. everyonce in a while she would pick it up or try and keep it from falling off her lap but she was fine through the hole thing. We had to change her bandage on her cath and she was not at all happy about that, she screamed and fought me the hole time.
Training is going well it will be better once I start doing it myself (tomorrow) but everything is learning learning i feel like Im back in school but this time you have to pay attention. lol. any way she is doing really good and is moving around more she walked in her walker for the first time and getting out of chairs so all around better than i thought. laying back and sitting up are still hard for her but shes getting there. We had the joy of a sponge bath last night and niether one of us are big fans of that especially with her hair, anyone who knows her has seen her hair its down to her waist, but beautiful. well for now that has been our day and last night and right now were off to our room at the ronald mcdonald house and then find food. take care

New hospital bear

Chey had to have blood work done today and they were really good with her over in meridian. They only had to poke her one time and got everythig she needed, she still screamed while they were doing it but shes a trooper. They gave her a bear and bubbles and a pink bandage she was better after that.

With her bear they gave her after blood work

walking day 2

I just want to say wow this is day 2 out of the hospital and she was walking into the dialysis center and everywhere she needed to go. I was so proud of her, nows shes a little wore out but then she sat for a little and walked some more.

outside walking

her long walk into dialysis but she did it very very proud.

Update

Chey was out of the hospital sunday july 11. She slept most of the way home and sat on the couch until bedtime. She did awesome she is such a trooper. This morning daddy got her up while I was doing stuff around town. Right before we left gave her, her meds and we were back off to Boise for dialysis training. Right before we got to the office she got sick but she was better after that. She did really well through the first day of training. She even got a little put in her. We will work on more this week and its alot to take in and knowing that anything can give her a infection and shes back in the hospital. I was also told today that theres not alot of little ones that are on dialysis so that sucks well this hole thing sucks but at the same time its saving her life. She ate a little today and is getting back up to her drinking again. We go back to see the kidney doc this wk so hopefully good news. while were in boise chey and mommy might go to the zoo I think it would be nice for her to get out and do something besides doc appt. Well who ever is keeping up with this will keep you updated this wk.

cheys tummy

Here is a pic of Cheys tummy after both surgerys. The one bellow her belly button is for dialysis and the one above that looks like a circle is her g-tube (feeding tube).

T playing in the play room

T is playing with his sister in the play room at the hospital. it was a god day.

Chey and brother

Chey with brother it was her first time leaving her room and she walked a little ways then got into the stroller to the play room walking was a littl tough because she was shaking so bad would have taken a pic but I was helping her walk but take my word she did awesome.

Play room

still playing she didn't want to leave

Chey playroom

Breakfast

Anytime chey eats its a good day shes like a rabbit only nibbles on things. I was having a hard time getting her to eat her lucky charms until we got the spoon then she loved it. she ate all but a little bit left.

going to sleep

she was all clean today she got a sponge bath and her hair washed she smelled so good and she was so tired her and t was asleep by the time i left at 8:20pm

feeling a little better

she was feeling better i was getting her to eat about this time she was like a rabbit just nibbling.

chey after t woke her up

after we came back t was loud and woke up chey she wasn't to happy

Chey back in her room after surgery and not to happy

trying to get her comfy but she was hungry and wanted everyone to quit touching her. she finally got her food and pain meds so she was happier

this was right after her surgery in the post op she pretty much was climbing out of her bed to get to me. she was still pretty out of it

Chey in recovery after second surgery

she was very out of it but didn't want anything to do with her bed. they had put another iv in her left hand during surgery so she has one in each hand now.

The morning before second surgery in pre-op

she was getting ready for her second surgery she was ok in the middle of happy and not but she was fine when she was playing with daddys phone watching utube videos

t rough day

T was having a rough day late naps and he kept falling asleep everywhere. he was passed out before we even got in the car and slept for a while. thought it was a cute pic

Hes tuckered out

finally after 2 days FOOD

she finally got food after 2 days of being in the hospital. she got mac and cheese and pb&j. she was gobbling it down.

still eating

it was good times

her first DRINK in 2 days

She finally got a drink and was in heaven. She kept asking for one and would cry everytime she didn't get it but like I said heaven when she finally.

violet went to surgery

thought this was a cute pic her dog violet went to surgery with her and they put the hat and mask on.

Her violet dog went into surgery with her

Jess fixing cheys hair for her

brother was hanging out with her and I fixed her hair it was in her eyes. she was much better afterwards.

Tristan and chey the morning after 1st surgery

daddy took this pic t was excited about cheys red finger so she kept showing it to him and he would try and grab it and laugh they were hanging out together.

chey feeling better

she was starting to smile and feel better this is a cute pic

Shes alot happier today

Chey the morning after 1st surgery

she was checking out her red finger she thought it was cool for a little while then just wanted it off

relaxing

she was relaxing but getting tired of her bed