Beehive Beauties and Winners Too!

 

I love being able to share good things!  I am so proud of the girls.  They did a beauty pageant and did wonderfully.  The first category was rockstar and then they did beauty. They were proud and not nervous and just had fun. Of course that made them winners before they got the trophies, but it was a high to see them get called up too.  All I want is for my children to be happy.  Today was a good day.

Check This Out!

This is one is out of order but I am too tired to move it. (plus I don't know how)

I made sure to include a picture of our hero Dr. Phillips.  Standing is very painful but he is trying!

Do You Hear What I Hear?

Well, things are progressing.  Believe it or not, it is harder for Josh now that he is getting stronger.  He feels trapped and is very restless.  Today the weather was beautiful and he cried several times.  He was just frustrated.  He trys very hard to accept things but some days are harder than others.  This last week has been very busy.  Josh had his MRIs and then saw the oncologist.  The good news is no new tumor!  They are moving us to annual MRIs and that is a blessing.  As is normally the case good is always tempered with bad and the next days results were not what we wanted.  We went for our hearing test and while the left ear did not go down much (it was already bad and needed a hearing aid but they had waited because the right was still good) the right plummetted this time.  The doctor was alarmed by the amount of loss and is now going to do 3 month tests to monitor.  We have ordered hearing aids for both ears and he will have them in 2 weeks.  It is funny but I think being able to hear will be a great problem for him - loud noises frighten him and I think that he is in for a surprise.  He will have to adjust but I am sure he will do well. 

Joshua is amazing to me.  He is humble and teachable and always trys his best.  He is not perfect but we are blessed to have him in our lives and his journey is teaching me and our family so much.  I know that where ever this road leads his in front and we are proud to follow.  The good news is that he is following our Savior so we are all headed in the right direction!  God Bless and we are grateful for your prayers and support.  -  Only 2 more weeks till we see if he can walk -  Keep praying.

OK, OK, So I am A Little Slow With Updates

Sorry that I have not posted in a few weeks.  Things are going well.  Joshua is in a routine and for the most part settled.  He spends a lot of time on the sofa resting his legs while they are elevated but yesterday his homebound teacher came and he is back to work.  He did not make it through the entire 2 hours, about 15 minutes before the end he became glassy eyed and was too tired but he will work up to it quickly and I am hopeful that he will be back to school in about 2 weeks.  I know he wants to go but I have to be careful about his stamina and his legs still swell if they are left down too long so he has to keep them elevated.  He saw the doctor last week and we are just waiting till the first of Feburary to see where he is at.  He will remove the casts then and xray him and decide if he needs new casts or braces.  He may get to stand then so we will see what happens.  I will post then to let you know where he is at.  It is amazing to me what you can get used to and think nothing of, people act like they are amazed when they see him but to us it is no big deal.  Thank you for your continued prayers, we know they make the difference. 

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!

Updates

Lots of people ask me what is new and how Josh is doing. I thought a post to keep you up to date would be a good thing. Except I don't quite know what to say. Josh is not doing well. But he is not doing badly either. We have had this summers MRI and it is good but he is getting harder to understand and now the doctors say his tongue is not working right. About 10 days ago he started saying that his tongue feels "twisted" and it makes him afraid to talk sometimes. That means he is declining but we still do not know why. They keep asking him if he has trouble swallowing and told us that if he chokes on liquid it will be very serious. Some days he is easier to understand but for the most part he slurrs alot. When you get the hang of it you can understand him but he is withdrawing into himself so much lately. He seems sad alot and thinks that he is the problem when people don't understand him. Especially when kids ignore him. I am heartbroken to see him so quiet around people. I see some depression and he seems tired more lately too. He is at scout camp this week with Gordon and luckily the boys there mostly know him and he is doing ok. Gordon took him for a drive this afternoon to nap in the airconditioning of the car and Gordon told me he is having fun so I am very grateful. I think the hardest thing about this latest problem is that we have nothing to fight. With the tumor we knew who the enemy was and what to do to help him. Now we don't know anything, there is nothing we can do. We just wait and watch him struggle. It is hard to watch him slip away and not even fight. Anyway, we ARE watching and taking him to all the doctors hoping someone can help. We will keep you posted as we find anything.

Things are getting Complicated

Ok, it is MRI time again. The results are in and it looks good. No new tumor and the spot from last time on his spine really was artifact, it did not appear at all this time. I should be thrilled but we got those results from a Neurologist who was opening new doors. Over the summer Josh has begun to have speech problems. It was suggested that this may have been from a mild stroke so they set up the appointment with Dr. Slopis (yes he is worth waiting 5 months for) Then the oncologist said it was just chemo decline so we kept the appointment to be sure but I thought he would spend 10 minutes with us and then agree with the oncologist so I was not worried. Well this appointment went in a whole new direction.
Joshua has the tip toe walking, now we see speech loss. They feel it is a muscle problem. However the legs are spastic (tight) and the facial muscles are flasid (loose). After this appointment we discovered that there is also a bladder issue that was not noticed that is also a muscle problem. Dr. Slopis thinks this all ties together in some sort of a genetic syndrome but he is not sure what. They are going to get a team together to make a plan on how to diagnose this because the cancer will confuse the problem. Let me stress this is not life threatening but is serious. He feels if we don't know what we are dealing with Josh could have problems later on. An example would be the bladder, if he doesn't empty it right he could have complications later that could be anything from infection to loss of a kidney. Basicly we need to find out what he has and then treat all these problems. So now on top of cancer poor Josh has some genetic problem. Also we thought the tip toe walking was not a big problem but Dr. Slopis says it is. It could cripple him as an adult so we have to know exactly what is causing it so we can fix it. It means that 2011 will have lots of doctors visits and invasive testing and possibly surgery on his legs at least.
I have been making lots of jokes today about this because we can't change it and I do not want to worry Joshua but I can't help thinking that this is not fair. Poor Josh has endured so much and now we are thinking that there is something new. A complication to cancer would have been bad enough but this is a whole new thing he has to deal with and there is nothing I can do to take it from him. He is a good boy and I wish so much he could just have a normal life, play ball like other boys (and like he wants to). Instead we spend so much time with doctors and there is so much he doesn't get to do. There is no point crying over spilt milk but I really was hoping for a quiet year and that is not going to happen. If I could ask you all for a Christmas present I would ask you to pray that they find answers fast and that whatever this is it will not keep Josh from his dreams more than he already is. I would also like to say that even though I am worried and so sad I am not forgetting my blessings. There are many and todays is the good doctor that is on the ball and looking at the big picture not a single detail. If we resolve this is will help Josh's future and that makes it worth it.

Hunting for Game

OK, this is the 100th post! I know I do not post often enough but I could not pass up sharing this. We have been fighting mice in our house. (ok ick ick ick) and we found a dead on on the floor by the computer desk. We have paid to have the house sealed and then Sunday night I saw another one. He got away and I called the bug man (a friend) on Monday. He came and inspected the sealing job (he is the boss and some else actually did it) and found 1 spot they might still be getting in. He put out glue traps with peanut butter on them and told me he would come today with the sealant to fix the outside. Well this morning the house smelled and I couldn't find it so I told the kids to start school and then Ted freaked out and screamed that he saw a mouse. Well he saw a mouse alright! It was dead, stuck to the outlet. Apparently when the house was painted last year the guys forgot to put the outlet cover back on and the mice have been getting in there. The dead one from before and this little guy got electrocuted! Now we can seal things up and they will be gone forever! It was just too funny. - Oh and by the way, on a side note, the glue traps did catch something, my friend's 2 year old tried to eat the peanut butter and got stuck! I think his mom was very gracious not to freak out and we cleaned him up. I am going to sleep much better knowing this is fixed and I do feel a little sad for the poor mouse, I have heard of putting your finger in a light socket but this is riduculous!

The Deer Hunter

I bet you didn't think that the deer was the hunter!! That deer saw the apple and figured it was his. He then moved in, wrestled Ted, and then - to the victor goes the spoils! We went on a field trip to a wildlife preserve where there are lots of wild animals wandering around. But I am shocked at how tame that deer was. We went in a jeep around the preserve and hand fed camels and zebras and wildebeests and all kinds of animals. We also saw crocs and a rhino and emus. The scariest thing we fed was a couple of ostriches. They just tried to grab the food bucket from you and I was so afraid they would peck us if we didn't feed them. All in all it was fun and the kids had a blast. We are slowly getting back to normal after the holidays and everybody is great! Josh's MRI showed no change! yahh Ted fell and hurt is ankle but it was ok by the time he got baptized. That was such a blessing. I think he really felt special that day and I am so glad. Gordon's mom and dad and sister and her husband and their 2 kids all flew in and so it was a fun weekend. Dorothy just got glasses this week so I will try to get pictures of her to post soon. The other news of Joshua, his thyroid is dying and they have started him on synthroid now. It is not a surprise, we knew that this was coming and just got him on his meds and he is doing great. Luckily there are no side effects to this one so it is a non event. We are still planning to start growth hormone in April. They checked for me and in the last year Josh only grew 1 centimeter so I guess it is time. Anyway, we love you and hope you like the pictures!