It's Very Cold Here

Where to start.....Tyler had his Bone Marrow Transplant and he is doing great.  I am so impressed with the little guy.  He is trying really hard to get better fast.  His body is responding well and he may get out of the hospital next week or so.  We all have our fingers crossed.  They will be staying at the Ronald McDonald House that is right by the hospital.  He has to stay there until at least 100 days after transplantation.  So we still have a long way to go.  Mike and Wendy are tried and of course they are worried but things are going well.  Mikey and Mallory are also there in the hospital every day while Mike is at work.  Someone has to be with Tyler at all times.  They switch off nights where one is a RMH and the other one is at the hospital with Tyler.  It gets tiring but they are holding up pretty well.

There was a benefit Bake Sale yesterday for Tyler.  Everyone in the community came together to either donate stuff or buy stuff or both.,  It was wonderful.  I am so touched by the outpouring of concern and caring we have in this little town we live in.  It's awesome!!!  Thank you to everyone who helped us.

The weather here has been reallllllytyyy cold.  We have snow too and I hear we expect more in the next few days.  It's 930PM here right now and the temp is -8.  It's supposed to go down to -15 tonight.  You people who live in California have no idea how cold it is.  LOL  I laugh at you and remember back to when I first moved here and thought that 20 was COLD.  I guess you get use to hanging if you hang long enough ya know.  

I am doing great actually.  I have been healthy (for me) and haven't gotten sick since last winter. As much as Dialysis is a pain in the ass to go to it sure is making my quality of life much better. Jeffrey moved back in to help take care of me and to take care of the house and the animals.  He and I are doing great.  I have been able to do a little cooking and so has he so we are eating.  He does the dishes and takes out the trash,  He feeds the animals and his big job is taking care of the wood and the stove so we keep warm.  It's a big job for him but he is taking it on and not complaining too much.  LOL  Jeffery is Jeffrey but we are getting along just fine.

I have been crocheting up a storm.  I have made lapghans for the family and myself and I made some things like hats and so on for friends.  It has been so much fun to sit and create instead of just taking up space.  I am still on the computer a lot too but not like I was.  I am going to make as much as I can to offer at the Benefit they are having for Tyler  We will be having all kinds of things to offer and the proceeds will go toward helping the kids pay the major medical expenses they are getting for this Million Dollar Kid we have.  LOL  And seriously the medical expenses will be around a million if you can even believe that.  How outrageous is that?  Anyway there are people in our community who are putting this thing together .  I will keep you all posted on what we will be doing.

As always you can follow Tyler's progress on Caring Bridge and on his Face Book page. 
Tyler would love to hear from you too so if you get a minute send him and Mikey and Mallory a card or a note to PO 245 Amery WI 54001

Love to you all.  

Sunday

Sunday finds me ready to watch some football and the final NASCAR race of the season.

Thursday Wendy, Mike and Tyler headed off to the hospital and got him all settled in.  Machelle had the kids but they wanted to come home so Jeff and I had the little ones that night.  Friday off to school for them and then they were back at Machelle's but again they wanted to be home so she brought them and we had another sleep over (as we call it when they sleep in my room).

The stove decided to blow a gasket (literally) Saturday so Mike had to come all the way back (he had already been here earlier to get the kids) and he had the little ones with so they ended up spending the night here and in their own beds.  I think it worked out well because the kids were tired.  I was talking with Wendy last night when she got the call and they will be moving into Ronald McDonald House today so all is well. They will be able to stay there for the whole time Tyler has to be in or near the hospital.  Thank God.  We were rather worried about living arrangements for the last few days.

Friday Tyler had his full body irradiation.  Wendy said he was sick to his stomach the rest of the day but by evening he was feeling better and the anti nausea meds were working  He was able to eat a pulled pork sandwich for dinner.  Yesterday he started Chemo.  You can read all about what's going on with Tyler on his FaceBook Page or his Caring Bridge Page.  Wendy posts almost daily updates.

Finally we have some very cool bracelets that we are offering for a $3.00 donation for each.  If you are interested in getting yours please let me know and I will give the info to those who are handling the processing.  There is a photo of what they look like.  I wear mine all the time.  They are stretchy so can fit all sizes.  Thanks for your help.

Quick Update

This will be a quick update but start checking back often to see how Tyler is doing.  Also you can join him on Facebook here or Caring Bridge here.  You have to sign up for the Caring Bridge site but they do not give out your info so it's safe and secure.

Tyler has been in and out of doctor appointments for the past two weeks. They have checked every molecule of the kid's body and found for the most part he is very healthy other than the Fanconi Anemia.  He has the day off tomorrow and then he will check into the hospital on Thursday.  They all will be staying at the Ronald McDonald House as soon as they can get a room.  In the mean time they will get a hotel room for a few weeks if necessary so they can be within the 50 mile limit from the hospital.  Either Mike or Wendy will be at the hospital 24/7 with Tyler and the other parent will be with the little ones the rest of the time.  It is going to be a juggling act for a while but I'm sure things will settle into a routine when the actual transplant has happened.  That is scheduled for November 21.  They will be using cord blood instead of a live donor for the transplant.  It is my understanding that using cord blood eliminates rejection so that is one good thing.  Also tho it takes a little longer before it starts making new marrow.  So Thursday is check in to the hospital day and then they do radiation and then a few days of chemo before the actual transplant takes place.

I will be updating here and also Wendy will be doing updates daily on Facebook and Caring Bridge to a lesser degree.  Jeff has moved back into the household so that he can take care of the stove and outside animals.  He will be here for me also.  I am able these days to get myself food and drinks but I can't put wood in the stove.  The temp right now is 22 and it's 6:30PM so as you can see it is getting colder here.  There is no snow yet but there will be soon.  Jeff will be here to take care of clearing the porch and other areas where I have to go to get to the van and go to dialysis.  It's also safer for me to have someone here in the house in case I fall or do something else stupid.  :)  

Keep check back here everyone.  Also please say prayers for Tyler and the rest of my family.  This is going to be a long journey and we need all the good thoughts and well wishes you can send us.  

Love and Hugzz to all of you!!

Another Day....

It's hard to believe but it looks like summer is pretty much over here. Right this minute I am looking out the window. There is a huge bank of dark gray clouds on the horizon.  It has been raining off and on for the last few days and it is getting cooler.  We are supposed to get up in the high 70's by the end of the week end.  We will see about that.  Looks like we need to get the last BBQ of the year in real soon.

Tyler will be going in for a bone marrow transplant in mid November.  His platelet count is almost non existent at this point. Even the smallest bruise can be very harmful because he has no clotting factors in his blood.  The Fanconi Anemia is causing his marrow to not make the platelets he needs.  New marrow will allow his body to make the cells he needs.  The whole process is very long and involved.  He will be in the hospital for a month or more and it will take several more months of being near the hospital before he can come home.  They will be staying at the Ronald McDonald house until he can come home.  He will be out of school for a year so he will have to be home schooled. Just getting everything coordinated is a major task.  We have to get someone to be here to help care for me and take care off the winter chores of the wood stove to keep the house warm. They will all be gone from home the entire time except for trips back and forth to get me and do all the other things that need doing...getting mail, paying bills, getting food in the house for us and the dogs and so on.  I'll keep you posted on progress or if you want you can go to Tyler's Facebook page. Click here for his Facebook Page or here for his Caringbridge Page. Wendy posts things on both sites and Tyler loves to read all your comments and good wishes.  Also some wonderful friends of ours are putting a benefit together for us. Please go to the FaceBook page set up for the benefit.  You can help in so many ways.  And any help you can give is greatly appreciated.  And many thanks to those who have already helped in so many ways.  Lastly on the Tyler front.........we need all the prayers you can manage.  Please say a prayer for him.

I have been crocheting these days.  So far I have made hats for all the kids and a few extras to give to the hospital for those who may need one.  I have made a couple of afghans......well actually more like lap blankets or Lappies as I call them.  And I am in the process of making baby lappies for my friends twin granddaughters.  Keeps me busy and off the streets..  And in the end someone gets a nice hand made item.  Be nice to me and you might get one too.  LOL

Ok enough for now.  Wendy was in here accusing me of writing a book so I'll finish for now and let you get on with your day.

 

Good Day Friends and Family.

The big news around here has been the weather.  It was almost 100 on the heat index with the humidity up in the 80% range.  It was horrid!!  Hot and wet was the word of the day.  It only lasted for a week but that was enough.  Mike put the air conditioner in the window for me so I could breath.  Even dialysis was warm and stuffy and that place is usually cool to down right cold. It is now finally decent again.  The days are in the 70's and the nights are in the 60's.  I'll take that any day.

We are all reasonably well here.  I continue on dialysis 3 days a week.  Some days are good others not so much.  All in all I feel pretty good tho so it is helping.  I am still tired most of the time and I am weak still too but I have been getting out more and moving around the house more now that the weather is nicer.  I want to ask you to help all persons on dialysis.  There are those in the government who want to cut funding to dialysis patients.  This will seriously effect the care I and thousands of others receive. Please contact your congressman and senators for your state asking to leave the funding at least at the levels it's at now.  I am sure you can Google the problem and find several places to respond to.  Thanks.  It could save my life.

Tyler has been having more problems with his blood counts being lower.  It looks like he will be in for the Bone Marrow Transplant next summer.  Of course I will keep you all up to date but you can also go to Caring Bridge and read his Blog. Wendy just updated his Journal.  You will need to sign up and then log in but it is a safe site and you don't have to worry about your email address being spammed.  http://www.caringbridge.org/visit/tylerstoolbox  He also has a FaceBook page.  Go to FaceBook then type in the search Tyler's Crew.  Friend him and see what the latest is there too. He reads well and loves to read his FaceBook page with all your greetings and comments. If you are interested in reading about his condition you can go to http://www.fanconi.org/  They have a brief bit of information on what it is and so on. Plus they have a lot of links to get you more in depth information.

Jeffrey was back living here for months and months but has now moved back out.  He is going to be working at Polaris, where they make snowmobile among other things, doing security work.  Kathy has also left us after living here for a year.  She wanted to be on her own again so she moved back into the Sr. Apartments where she lived before.  I'm here for the long haul and according to my daughter yes I am not allowed to move out.  Why I would want to is beyond me but it is a joke she and I have.  I'm not going anywhere!!

I think I am in my 2nd childhood these days.  I decided that with my fingernails growing like weeds I would either have to cut them again or paint them.  I decided on painting this time....Blue!!!  What do you think of them??

Wendy didn't have any odd colors so being the good daughter she is she got me a bottle of Blue with a Green shimmer.  What a deal!!!  LOL

All the kids have had their birthdays for the year.  Tyler just turned 9 on June 21, Mikey 6 on July 10 and Mallory 4 on July 7.  It's a rough month for the paycheck but once it's over it's over til next year.  All at once.  We had a small family party for each of them on their special day then in between we had a big party for all of them.  Wendy and Mike got a ton of cup cakes for all the guests and the kids made a haul of toys and money from family and friend!!!

I think that does it for ths report.  See ya soon!!  My love to you all!!  Drop me a note when you get a minute.  Love to hear what you are all dong!!

It's been busy here

Finally it has decided to be Spring here.  Days have been warm and up in the 60's and nights are staying in the 40's.  Everything is turning green and all the nasty white stuff is gone!! And of course that means the mosquitoes and other buggies are starting their yearly pursuit of dinner....meaning that all of us are now on the buffet table.  Man I need to call my Avon Lady soon and get that order in for Skin So Soft before it's all gone. Wendy has been out front cleaning up the planters.  She has the Mole Momma and her babies, the frogs and the Swans all in their places now.  Mike is in charge of the yards so he has had the kids out there picking up twigs while he mows.  In a few days I am sure Wendy will get the garden boxes ready for the tomatoes and the cukes and the zucchini and all the other stuff she has growing on the porch.  Looks like a busy growing and canning/freezing season is just about upon us. 

This week our little Mikey lost his first  tooth.  He is so proud and is going around showing everyone his missing tooth spot.  Of course the Tooth Fairy showed up and took his tooth and left money in it's place.  Awesome deal.  I wonder if she will bring me anything when I go get this tooth pulled and my new bottom dentures made. Bet she's in another country when that happens.

Here's his toothless little mouth for all of you to see too!!

Last night it was getting to be bedtime and everyone was starting to get settled in for the night when we heard a thump and then a pop and then everything went dark!!  It seems that some dumb ass with his tractor out in the middle of the night crashed into the power pole.  Took out the whole neighborhood.  Wendy went out to see how bad it was and when she went to turn around in this man's driveway a few hundred yards up the road from us she almost ran over power lines that were down in his drive.  Mallory totally freaked out!!  She was really scared.  She screamed and cried every time her parents left my room.  The boys thought it was great fun.  Mike went out and got the generator from the shop and set it up.  When he ran the cords in the house I was able to hook up my plug strip. And of course being a computer nerd, I set up the laptop and they all came in my room and we watched Nemo.  Finally around midnight and with two little ones asleep they all went upstairs and off to bed.  The power came on at about 2 so I got my oxygen plugged back onto the condenser.  But the tanks were still on the floor next to me.  Good thing too because the power went off again around 5.  I just plugged into the tank and went back to sleep.  By the time I got up this morning the power was back on and I was back on the condenser.  And the kids had been in here and snagged one of the netbooks to go upstairs and play computer on.  But the good thing was that gave Mom and Dad a chance to sleep in til 9.  Wow.

I am doing OK health wise right now.  In fact I should be good til August or September now as far a colds and illnesses.  Dialysis has been going OK these past few weeks.  I am having trouble with the fistula and have had to get needle poked three or four times before they finally get them in a place that doesn't blow out or infiltrate.  My arm has been really painful for that reason.  My doctor is finally back from maternity leave so I will get in to see her in the next couple of weeks for meds check and just a general checkup.  God I'm glad she's back.  It is so hard to try and explain to another doctor what is wrong when she knows....a lot of the time she knows just by looking at me.  I guess when I an gray and quiet she gets all the hint she needs.  Most of the time that isn't me.

OK time to get this posted for you.  Mike is making Gyros for dinner so I have to go weight in on the pronunciation gyro or yuro.   Makes no difference to me how you say it cause I say his are awesome!!!

Love to you all.  Remember those who gave their all so you could sit around tomorrow with a shrimp on the barbie and a beer in your hand. 

Hugzz.....R

It's 4AM.........

Do you know where your Mother is???  Wendy's Mother is in her room watching TV and working on the computer.  I say working because most of the time she.....Ok  ME....most of the time I am playing a game.  I have 3 or 4 I play on a regular basis.

My Mother is no doubt up in her kitchen in Hood River Oregon having a cup of coffee and reading the paper.  Not real sure but I know for many years that's what she was doing.

My daughter Wendy, Mother to Mallory, Michael, Tyler and Jeffrey is fast asleep in her warm little bed.  I know this because I can hear her when she gets up if I am awake.  The kids are all doing fine.  The boys are really busy with school and Scouts.  Both of them are Scouts this year.  Wendy is still a den leader and works hard giving them all kinds of cool things to do to earn their belt loops.

My daughter Laura, Mother to Eli, Nadeyah and Myrandah is hopefully fast asleep also.  Her oldest is home right now after getting into some trouble but my guess is she will be gone in a day or two.  In June she will be 18 but Laura will, no doubt, have many more sleepless nights ahead of her.

I have been feeling pretty good these past few weeks other than being tired and having really sore muscles. Dialysis is ok.  At least it is doing it's job.  I have no cough thank god and am breathing ok for now.  I have a problem with really dry skin.  Wendy got me a new to the market product called Gold Bond Diabetics' dry skin relief.  If you have dry skin you should give this stuff a try....diabetic or not.  It has a strange feel to it when you put it on but within a minute or two it's soaked in and doing it's job and you can't feel it.  I hate lotions and creams that feel heavy and greasy. 

The weather here has been anything good.  It was snowing last week then over the weekend it got up in the 70's and we saw Mr Sol.  Then last night we are back to snow.  Spring is still trying to get here but she is having a hell of a hard time.  We may just skip into summer the way things are going.  I have a couple of photos for you to check out.  It's May for crying out loud and we have a foot of snow.