Merry Christmas

I thought you might like to see the difference from Tuesday to Sunday.  You can't see it but he is doing well.  We really have had a blessed christmas.  We enjoyed having Gordon's folks come and spend the weekend.  They left today and we were sad to see them go.  Josh fell asleep as soon as they left and he is worn out but he really is doing well.  He is not taking too much pain meds and he is being really good about not putting his feet down so the swelling is not bad.  Merry Christmas to all and we will keep praying for you and appreciate you praying for us!

Home

Opps!  This is a little late.  We came home yesterday.  By the time we got home and spent time with Grandma and Grandpa it was late and I didn't get a post in.  We woke up Saturday after a rough night and Josh felt better.  The doctor came in and told him he could go home.  We wasted no time and I disconnected the IV (I love being a pro) and then got him dressed.  As soon as I got him in the wheelchair he was running around the floor and I had to lasso him and bring him back so the nurse could remove the IV and get us checked out.  I was also proud of Gordon and I cause they left us to leave without taking us downstairs and we had to figure out how to get him in the suburban by ourselves.  We did not look like too big of idiots and did not bang Josh us in the process.  That to me is a win.  We have discovered that this home is NOT handicap accessible.  The downstairs bathroom door is so skinny that the wheelchair does not fit through it and we have to put him on the floor and he scoots to the potty and then we lift him on.  Not very graceful but at least he gets there.  He really is doing remarkably well and I can credit that to you all.  Prayer works!  Josh needed you and still does and we are so so grateful for your conversations with Heavenly Father, I know he is listening.  Thank you so much, we love you all. 

Change Is Good

Ok, today has brought alot of changes and that has poor Josh freaked out.  They turned off the epidural and he can feel again.  It was frightening to suddenly feel and things were painful and he was not sure what he felt.  We have finally gotten him stable and he is resting.  It is a good thing but I had a hard time convincing him of that, he had just gotten used to being numb.  I wish I could take care of the worries but we just have to get through them.  He and I just take it one day at a time.  While he is just worried about all this I am excited.  It is one step closer to home and one day closer to recovery.  I am hopeful that tomorrow will bring us home.  That is the plan anyway.  We will be administering oral meds every 4 hours through the day and night and in the morning and evening there are extras.  Hopefully by christmas day we will be backing off to every 6 hours but we will take it one step at a time.  Love you all.

Thursday Night (I think)

Days easily run together in the hospital but today was a good one.  I got the house clean (somewhat) and came to the hospital.  Dad took the kids home and I spent the rest of today with Josh.  His physical therapist came late in the afternoon and once we got him in the chair I took him downstair to the parking area.  It was cold and he wanted to go right back inside but he seem to perk up and that was the goal.  By the time I got him back to the room he was actually talking a little!  Then his good friend Gideon came and he really was excited to see him.  By the time they left Joshua ate his dinner (another success - he has not been eating) and now he is happily snoozing.  The plan for tomorrow is to stop the epidural at 8am and then by 12 he should have full feeling.  If things go well and he can manage his pain with oral meds then around 2 they remove the line and he is one step closer to home.  They will keep him overnight to be sure and let him go Saturday morning.  It was fun taking him around the hospital.  Everyone commented on his casts - one is red the other green.  He charms people even when his is not feeling good.  I can't wait to get Josh home and all I want this christmas is for us all to be together.  I pray that this is the gift we can all have this year, family close and worries far away.  We love you all.

Good Night

I went home tonight so Josh could spend the night with Dad.  He got into the wheelchair 2 times and is worn out.  I thought they needed to have time together and as Gordon put it, there isn't any more food in the house so I guess I have work to do!  I came home to a jar of pickles tipped over in the fridge and somehow it got set too high and everything on the top shelf was half frozen so I think I was needed here.  The doctor came in after I left and Gordon said he may start the weening from the epidural tomorrow so we will have to see how it goes.  I am a little worried about him, he is obviously a little depressed. I am hoping that when the epidural is gone it will help.  I think it freaks him out a little to be mostly numb.  Also the valium he is on may be contributing to that.  We got a nice gift from his school today, they had a bouquet of balloons with some great chocolate sent over and it was nice.  We are just trying to take it one day at a time and look for small victories.  I hope that everybody knows how much we appreciate you.  Prayers, meals, and messages are great.  It is really hard for me to see him low and back in a hospital bed.  It brings back his treatment and I hate to see him so sad.  I wish he was done with all this and could just do all the things he wants.  I know this is a step to try and make that happen but it just isn't fair.  Then I see the kids at the hospital that are so much more sick than Josh and I feel guilty for thinking that way.  We are so blessed and I know it.  One day at a time. (I guess I need to take my own advice)

This Morning

Well it was a rough night but today is looking better.  We had some post op vomiting and then couldn't sleep well.  He was a little stressed out this morning but finally got some valium in him and he is chilling! We have seen the morning rounding team, the pain team, physical therapy and the doctor this morning so we are moving and shaking.  Ok, not moving yet but talking about it.  I am waiting on Gordon to bring the kids so they can see him and I think that will cheer him up alot.  Anyway, this is a short note as I need to get back to it, they are bringing a wheelchair in so we can practice moving him on it.  Keep praying and thanks. 

Recovery

We are in the recovery room with Josh!  They put a red cast on one foot and a green cast on the other and his toes are yellow.  He looks a bit puffy and is slurring his words some but I think he looks heavenly!  He is sore in his muscles from being pinned down for so long but will be ok.  We spoke to the doctor and he said they did 4 surgeries on each foot.   They cut the tendon and then reattached it longer (not sure how to explain that better) then they cut muscle under the arch and lengthened that tendon  They then took a triangle piece of the bone out to move it down. After that they severed the tendon over the big toe and broke the bone and then put it all back together with pins and plates. ( they are under the skin and permanent)  They did that to both feet and stopped.  He still needs to have his toes done (other than the big toe)  but that would have been another 3 hours so they didn't do it today.  He is still numb from the waist down from the epidural and the doctor says they will keep him numb till Thursday at the earliest, possibly Friday.  We should be home Saturday but heavily drugged for 2 weeks.  I want to cry as I write this because all I care about is that he can talk and knows I love him.  Thank you so much for your prayers, this little boy is my world and I need him to be ok.  I know he will because he is already asking for his new Kindle (Thanks more than I can say to my wonderful sisters and brother who thought about that and made it happen)  I really love you all for being a support to our little family.  We love you and are grateful you.

Update 3

Ok, we are in the home stretch!  They are done the second foot, and closing.  They said closing would take 1 and 1/2 hours and that was about 1/2 hour ago.  I don't have any more info about this foot but will hopefully be posting the final doctors report soon.  I am so excited that things are going well.  We have seen some truly ill children today and it really makes me relect on how blessed we are.  2 girls were getting back surgery, one for a broken back and the other for a curved spine.  A little boy with a syndrome that caused his hands to be fused together was here to get a feeding tube because he just won't gain weight.  He was totally cute but so small and fragile.  I can not wait to hug my sweet boy and hear him complain that he wants a popsicle! (orange of course)  I forgot to bring the camera (ok, my hands were full with the laptop and his kindle and the blankets and overnight bag and purse and phone) anyway I will try to get some kind of picture as soon as I can. 

One Foot Done!

We just got the phone call from the surgeon.  One foot is done!  I was speaking to the nurse and she couldn't give me tons of details but she says it went well.  They did have to break bones and she said they actually used a saw to cut several bones apart and put them back together but we will get more information from the surgeon after he is done with the next foot.  I guess the right is done and now they are doing the left.  We are very pleased at how fast they are going and are anxious to get him un-intubated as soon as possible but things are going well.  Thanks and keep praying!

Update 1

Ok, they just began cutting.  It took them an hour and a half just to prep him but he is under the knife now.  We were told it would be at least noon before the next update but they are working hard.  Then anestheiologist said he was really sweet and calm and she was really impressed with how he did.  Everywhere Josh goes people really are touched by his spirit.  I wish I could say he got that from us but that is just proof that we lived as spirits before this life cause he just came that way!  Love you all, keep praying.

It Begins

He is in surgery, they took him at 9am.  We will be getting updates but they expect the surgery to take at least 6 hours, if we hit 6 and 1/2 we will match the brain surgery!  The actual surgery will not start till about 10, they are putting him under and then giving him IV's and an epedural so it takes some time to get him prepped for the table.  We laughed and joked all the way to the door where we left him and then I cried when he was gone.  I don't know why but this surgery is hitting me hard.  Maybe because we just don't what the outcome will be, or maybe because I know he will be in a lot of pain after but it was hard to see him roll away.  I will update today as we get news, please be patient, I know everybody is anxious.  Thanks in advance for the prayers we know are being said today, we need that more than anything.  We love you all.

Changes from the Ground Up

Well, we are at it again. After months of tests and enough blood drawn to suck poor Josh dry, we have no answers. Every test comes up negative or normal. Josh is an egnigma wrapped in a riddle. That is hard because it makes further treatment for some of his problems a shot in the dark. We went to a ortho surgeon to see about fixing his feet and getting him on the ground. It did not go well to say the least. First he told us he would not lengthen but actually need to sever the tendons to make a difference. Then as we got more into what it would actually take to correct his feet and found that they would also have to sever the tendons in all of his toes to make them spread out flat again instead of curling inward. He talked about putting a halo brace on both feet and Josh being in a wheelchair during recovery. This turned out to be the good news. Because of the test that showed a problem with the nerves instead of the muscles there is a good chance that Joshua would go back up on his toes in a couple of years anyway. Also, there is a possibility that the surgery could make Joshua worse instead of better. The long and short of it is that this doctor (who is very nice and highly recommended) will not do it. He has recommended that we see someone else. I do not blame him, there is a big risk to him to try this and he doesn't want to hurt Joshua but it really frightens me that this man who has lots of experience won't do it. I am sure you are thinking just leave him alone but as he gains weight and some height (thanks growth hormones) it is getting more painful for him to walk on his toes all the time. If he stubbs a toe he can not walk without pain for a couple of days. Also, it is starting to effect his participation in scouting activities too. They have just informed us that he can't go on any scout activity without Gordon with him because he is so far behind on the walks that they can't keep him with the group. That is a scouting safety thing, I know they are looking out for his safety. He is tripping and stumbling more too. We are going to go to the doctor that this one recommended but I am now very concerned. I see Gordon and I having to make a no win choice for him.
The other big concern for him is that he has still not fully started puberty yet and his bone age says he is running out of time. We see the endrocronologist in April and if something doesn't change they may have to start him on synthetic testosterone to try and get something going. Also not a good thing with lots of risks.
I do not post much now because I am trying to keep up with the kids and making life as normal as possible but I still worry just as much as always and we still need lots of prayers. I don't have the right to ask for anything because we have been blessed with so much but I just wish something could be easy for him. I want him to have something in his life that is normal and happen like it is supposed to. Please don't think we are totally disheartened, he is happy and we are enjoying our blessings. We still have no evidence of further tumor and that is everything! He is so proud (as are we) that he now has the priesthood at church and really works hard to be worthy of that. We still go day by day and do the best we can. I just think that it is important for our family to know what his struggles are so we can all still pray for answers. We love you tons!