Not feeling well

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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.

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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.

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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.

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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

chey in her new room

chey sitting on moms lap in her new room. she is doing ok the pain meds are helping her and she was sleeping when we left her. She has another surgery scheduled for sat at 7:30 and she is getting her dialysis catheter in. She will be at the hospital until sunday and then we are going home and then coming back to boise for her dialysis training. Shes a trooper. They said this is the toughest time right now for her. It breaks our hearts that she has to go through this.

Chey in the recovery room after PEG surgery

Chey right after surgery they gave her a little medicine cause she woke up crying, the gas makes them feel weired when they come out of sleep so once she woke up again she was held by mom, and after about 10-15 min she was better and not crying unil someone touched her.

Chey waiting in pre-op

after her gown was put on

she was really happy here after her gown was put on then she wanted in the chair she was in the room for a good 2 1/2 hrs or more that we were waiting on the doc to come in and get her. She even got to play in the play room.

Chey playing before surgery

chey was playing with brother before surgery

car iude to boise

she fell asleep right after the last pic i took

On our way

. It is now 8:10 am and we are on our way to Boise for chey surgery. No one is excited about today. It's hard to watch one of your babies go through this. But at the same time thank god we found it when we did. As of right now she's back to sleep will keep everyone posted.

Hippo Therapy

This was cheys first year doing hippo therapy (2009) and she loved it. This year (2010) she went right back into it like she never left. She asks (signing) about horses all the time now. She has just started trotting for fun but once she goes on dialysis they will stop for a while.

T at home working

I am working with T at home on his therapy stuff. I'm trying to get him to hold himself up but while he stands he has to be in a stander because he has low muscle tone and just falls over. He can't stand up straight by himself.

Chey with yellow glasses

Chey playing dress up she likes putting on glasses and putting stuff in her hair. Shes a very happy girl.

swinging chey

Chey loves swinging she tells us in sign that she wants to swing. She has to go into a swing like this cause she would fall out of a normal one, but she loves it, she plays and tries to kick me. :0)

T in walker

T in his new walker at therapy he loves being able to move in it, but still uses both feet at the same time so trying to find a way that gets him to use his feet normal. We have a loner at home but we are trying to get him his own.

t in cool glasses

T looking Cool in his glasses and eating he loves eating its one of his favorite things to do.

happy happy

Our happy babies. It was funny when chey had her hair done like this she kept hitting her self in the head with her braids. They are such happy kids in this pic