Today, Tomorrow, zzzzzzzzzzzzzz

Ok, Ok, I know it has been a long time. Things just seem to happen quickly and I can't keep up. Today I am on very little sleep (about 4 hours) and that is getting to be normal for me. Please don't misunderstand, things are great, it is just that my life has changed so much and I can't keep up. As I write this my beagle, Maryland, is running back and forth on the patio and whimpering. She has 6 puppies and they are inside with me. She got mastitis (is that spelled even a litttle right?) and now can't nurse the litter. Of course that means I have to. Puppy formula smells even worse that kid formula! The good news is that it is only for about a week till they can wean but still it is a lot of work. Homeschooling is going well but takes a lot of time and organization. I am very busy these days. I am still working with Ted to get him diagnosed and feeling better. He coughs every night and most days says his stomach hurts at some point in the day. He has had all the tests and they are not getting at answers but at least now we do know for sure that he has acid reflux. They are treating that but it doesn't stop the symptoms. The next stop is a pulmonologist to see about asthma. It is alot of running to specialists but at least I am good at that. Joshua's MRI was good, no evidence of reacurrance but he has been seen by the endocrinologist and that was not so good. He needs growth hormone and may have a thyroid problem but they can't treat the latter till they fix the first and they can't start treatment on the first till he has been 2 years out of treatment. Ok, actually they are going to start treatment at 1 year out. It carries risk but the doctor says we can't wait any longer than that. It becomes a big juggling act to work on all this. For now though, they are waiting on everything till next April and that is just fine with me. It is a break and we need it. This week is crazy with Halloween coming up. We have a church party tonight and then Candlelighters ( a cancer support group) has a fall festival on Sunday afternoon. Then we are going to the YMCA,s fall festival on Friday and the actual holiday is Saturday. Now add to that that the children's museum is having special exibits this week that would be great for the kids to see and if they come in costume they get a treat and the zoo is doing boo to you and they really want to see that and you can start to get an idea of how hectic it is. Some of you may be asking if we really need to do all that but once you have a child with cancer your perspective changes. I want them to have fun and they have missed so much that it is a small thing to do what they want. Also some of these things are really good for them, candelighters is a great support to our family and a chance to see other kids with cancer and be friends. The Y is our home away from home and we want to support their activities. We are on a scholarship and they have had us do some fundraising for them by telling our story and why they are important to us. We attend homeschool gym and swimming and tons of other things there so it really is important. It is one place where the children are just kids and fit in and have friends. Anyway, between homeschooling and fun stuff and doctors and puppies (we actually have 2 litters) I am swamped! I am also trying to slowly get the house in order and that is fun too. Believe it or not, I have worked really hard to make life pretty normal for the kids. That is the reason I don't sleep, I do lots after they go to bed. They do school and have fun and that is what normal kids do so all this is worth it for that. Please do not misunderstand, I am not whining, things are great, I just want you to have a glimpse of what our lives are so you will understand if my posts are slow. I want to tell you everything as soon as possible but time is one thing I get very little of. Well I had better get going, the pups are starting to whine and the other litter (which was delivered by c-section ((first time in 15 years of breeding))) needs to be checked on too. Have a great day and know that we love you.

A Snake, A Neighbor, and Blessings

Ok, let me start off by saying this is not really about Joshua, but about all my family. I knew that this would be something everybody wanted to hear about.
For the last 2 nights Malachi (our male beagle) has been barking and we could not stop him. So today I come home in the afternoon and he is barking again. I looked out and he was just circling the grass and barking so I went out to see what was upsetting him so much. I was not prepared for what I saw, a 3 1/2 to 4 foot snake. I thought it was a black snake and I was not too worried, I have handled many snakes growing up. I was going to pick it up and throw it over the fence but I had a bad feeling and decided to get a neighbor to help. (It has been years since I handled one) My neighbor is a young policeman and he came over. But he stopped dead when he saw the snake - he looked at me and said that it was a water moccasin! Here is where the story gets funny (if you can believe that) He and his wife had come over and she said to him kill it and he said it was too big to cut with a shovel , it needed to be shot. So, his wife says do you want me to get your gun and he replies, "no, get yours". Ok, at this point I am picturing a little cap gun, (she is a very little girl) Well she comes back over with a blanket and in the yard opens the blanket and pulls out a very large shotgun! Just to be clear at this point we have put the females dogs and all the children in the house out of the way. Malachi wouldn't go in but he went to a corner and stayed down. Well, this guy was good with a gun, one shot and he blew its head off. He said they carry disease so we carefully shoveled it into a heavy plastic bag and I took it to a dumpster away from the house right away. I thanked the neighbor and let the kids and dogs out after we made sure the yard was safe. At the time it struck me as funny, a snake, a gun, the whole thing. But a few hours later it hit me. My little ones go out at dusk to play in the yard and I think that Malachi saved someones life. At the very least it is a miracle that he is alive and my two pregnant dogs are as well. I just keep thinking about how big that snake was and how it has most likely been in my yard for 2 days. We are blessed to have the dogs and that they watch over us. We are blessed to have good neighbors that will take care of us in a pinch. Mostly we are blessed that the spirit warned me not to touch that snake, it could have been very bad.
As I write this I am stuck at how quiet Malachi is being, no barking. It makes me want to cry, I am so grateful to him, and he still won't let us pet him, he is better but still very shy. I know that he came to our family to watch over us and I am so glad we named him for a prophet, he is a very big blessing.
I also want to tell you this - we are living in WILD KINGDOM! snakes, mice, frogs, skunks, the list keeps getting bigger. Hahaha, I guess I just need to get used to it. When you say your prayers, thank God for my good dog, and for the warning he sent. Thank him for good neighbors and that my family sleeps soundly tonight, I know I will.

School, Tests, and Fun

Ok, I am sorry it has been so long since my last post. Between all the fun the kids have been having and my surgery (yes, I am starting to feel better) I just haven't gotten around to it. We went to MD Anderson on Friday and did Josh's hearing test. Great news, he is stable and they don't want to see him in the hearing clinic for 6 months! woohoo! Josh finished his first week of school and he is doing well. He is really liking the online school. I do see some problems but they just need to be worked out. He has not had this much work in a long time and his processing speed is so slow that he has been doing 8 hours + each day. We are going to have an ARD (a meeting to discuss his needs) and then we should be able to make adjustments to his work to cut the time down. He is having fun but I do not want him to burn out either. We are trying to shift from the summer of fun to the fall of school. He is taking Spanish this year and loves it. I will have to get some current pictures to put on, you guys will not recognize Joshua. He has so much hair now and looks so different. Tomorrow I start teaching the other children so it will really get crazy then. We are doing piano for Joshua, Teddy, and Miriam on Tuesday mornings. Also one day a week Joshua will go to MD Anderson to work with the teachers there and when I pick him up I am going to do some volunteer work while we are there. Ok, did I cover everything? Hearing test, school, and all the fun we are scheduling. I promise to try to better about posting, we have an MRI at the end of this month so there is always something going on. Thanks for your prayers, we are proof that they work every day.

Great News, And News About Gum

Ok, Joshua had a wonderful birthday week. My kids stretch their birthdays into several days at least. They get to pick a resturant for dinner and then there is usually some special activity. Anyway, he decided to go to breakfast at IHop instead of dinner so we went out on his actual b-day. Then we went to the childrens museum on Friday and had friends over on Saturday so it was party week. Ted had the comment of the week on Joshua's birthday, we were all in my bedroom first thing in the morning and I said to Joshua isn't it great, you are now double didgets, you are ten! Ted piped right up and said "now you can eat gum". (I have set a rule that you must be 10 to chew gum, hoping to avoid gum being swallowed or left on the floor.) My mother used to mumble things as she used a butter knife to scrape the gum off her nice hardwood floors. My theory was that it was a long way off. I guess these kids are growing up fast and 10 is just around the corner. Well Ted was pretty disappointed when Josh wasn't too interested in the gum. hahaha Anyway, it was lots of fun and little emotional for me too. Just the other day we were not even sure he would live to be nine and now he is ten. Hooray!!!!
OK, on to the great news. We have been working to get Joshua into an online virtual academy school. It is a charter school here in Texas and a great option for him. He will do his work online through the computer and then we are supplementing it with one day a week at MD Anderson's school to have the teachers there help him with his lessons and new concepts. They of course have a wait list and I was not sure he was going to get a spot but he did. They will be sending us a computer and printer and everything. We have prayed and researched and really think this is the best educational option for him. The great thing is that it is a charter school here so we don't have to pay for anything. Also they have a department to deal with his IEP (Independent Educational Plan) and help us work out his special needs. It is a load off my mind that we can move forward with his education, he is eager to work and I am sure he will do well. Things are going well. We are still partying this month and the kids are having a blast. The library, the pool, scouts, and anything else we can stuff in this month. Sorry the posts are far apart but we are too busy to type right now. Thanks for your support.

Catching Up

Sorry about the delay in posting. I kept hoping to have pictures but it does not seem that it will happen soon. So I just decided that I had better post and if pictures make their way into my hands I will post again!

First, Camp Star Trails (cancer camp) was great. The children loved it and I think they were very popular with everybody there. When we picked them up the counselors sang their praises. I think the hit of the day was Dorothy. Lots of the little ones struggle at camp but she shone. She behaved and was fun and apparently kept telling the counselors " My mom said I shouldn't do that". What amazed the counselors was that she actually did what she was supposed to! Apparently lots of kids tell the counselors what they are supposed to do but then do whatever they want. I am so grateful to MD Anderson for making this possible. The children really need to be normal kids and camp was so good for them. Also we left Rachel for 3 days with a friend and she had a blast. My friend Nikki actually made her a T-shirt so she would have one too. (the kids at camp got a T-shirt) They came home brown and very happy.

Now that we are back home the children are having a hard time getting back into their routines. (me too) We have been staying up way to late and being a little wild but I am slowly working them back into it. They are in swimming lessons every morning and it is a big production to get them out the door. (hahaha) Anyway, they are having so much fun this summer. Gordon and I are pretty tired but we are enjoying them.

We went to MD Anderson for Joshua's quarterly MRI and blood work and everything looked great! No new occurrence and his numbers are moving up nicely. The doctors even saw a little reaction in his knee reflexes. It was only slight but we will take it! Every MRI makes me nervous and I really breath much easier after it is over. Thanks for your support and prayers, we know they make a difference and help every day.

Twilight Camp

BOY WAS IT HOT! We had a great time at cub scout camp. Joshua made it through the whole time. I really didn't know if he could take the heat but he did not give up and stayed every day. I do not have any pictures because I was with Josh and if I took pictures of him I would not have gotten any of Teddy who was also there but with the Wolf den. (Josh is a Weblow) I try hard not to make the other children feel like Josh is always getting special treatment. So no pictures of one without the other. There is supposed to be pictures on the scout website of them both so I will have to wait and see if there is. Anyway, we had such a great time. Teddy loved being a Wolf, this was his first scout event. The girls were in the tot lot so they were out in the heat with us. (I couldn't just leave them home alone) They had fun with their groups too.

Ok, let me just tell you how proud I am of Joshua. He did BB guns for the first time and it was very hard for him. It is a six step process before you can actually fire the gun and it was very stressful for him because he could not remember all the steps. You know, things like check the safety, load the bb, cock the gun........ anyway the first day he took so long to get through the process he only got to fire 4 times. And by the time he did he was so stressed he didn't even hit the target. Well the next time we went to the range I told the Range Master and he worked with him. It took 2 extra tries but he not only got the process down he made his badge. You have to score 35 points and he got 36! Not everybody gets the patch for junior shooter but he did. Most of the boys in his group got it but they have all been shooting several times before and only one other boy got it on his first time at camp. I don't think that the guns are a favorite of Josh's but he stuck with it and got it done. He was really into archery and now wants a bow and arrow set but I am not sure about that. Anyway, he got at least 3 badges and I am very proud of him. He is well on the way to getting his Weblow badge and Arrow of Light.

Well, I just finished packing the kids for cancer camp and tomorrow we leave so I will write more when I have news.

The Last Day and a Trip to Remember

Well we really know how to party! If you want some stellar crab dip drop by Celia's and Cliff's. The house in under construction but they still can do it up right. We had a great dinner there. It was nice to relax and the kids love their cousins, Erin and Kenny were lots of fun to play with. We also got to see Susan and Richard in a parade! That was pretty neat for the kids. I truly think Dorothy will ride a motorcycle when she is older. As you can see she takes it pretty seriously. There was a group of cheerleaders in the parade and my girls thought they were princesses so we had to get a picture with them. (I think it was more special for those cheerleaders than being in the parade.) The last picture is one that means a lot to me. I love to take the children to the cemetery where my dad is buried, it makes him real to them. Being able to go on Memorial Weekend we a real treat. The cemetery was filled with flags and very peaceful. Whatever holds us back from family in this life is nothing. In the end we are bound to our ancestors and they to us. Who we are is forever linked to our family and they are the ones in the end who shape us. It reminds me that whatever Joshua's future he has and continues to touch so many lives. It makes me so glad I was able to be raised with my wonderful sisters and brother. I am truly the sum of them and my parents. I hope I can pass their great qualities to my children. Anyway, I loved this picture of my babies hands on his grave. Each generation touches another.
OK, who said I could get philosophical? I loved the whole trip but seeing my family really was the best. We didn't get to see everybody, there just wasn't time but we love them all and as the saying goes, We'll be back!!! Enjoy the pictures and at the end I have another story to tell. This one is kind of funny and a little shocking......

Here it goes. We have officially ticked off Make a Wish. I would like to start by saying we are very grateful for all they did and the chance to meet Mrs. Osborne. However, that said, you are not going to believe this! When we found out the trip was only for 2 1/2 days we asked if they could extend the flight home by several days. We said we would pay for hotel and meals and expenses. We just wanted them to change the flight day. Well they said no, but when our local Make a Wish representative told us she suggested that we call the airlines directly to do it. So when we got to New York we did just that. They said no problem and got us the flight on Sunday. One of the things that is included in the Make a Wish program is a ride to and from the airport. So we called the company that provides that and changed the time on the ride. Now mind you these changes did not cost Make a Wish anything. We were careful to be sure of that and took care of everything ourselves. Well when Make a Wish found out they flipped. We got a very vague call in New York from them saying that they didn't approve of the change. Well, we get home on Sunday at about 9am. We are exhausted, the kids are in their pajamas and we have a ton of luggage. We get off the plane and there is no car to take us home! I called the car company and the man looks at the notes and says that Make a Wish called them and said that the client doesn't get to make changes and canceled the car. They left us stranded at the airport! I felt bad for upsetting them but can you believe that? No matter what happened I thought Joshua came first and making the trip special for him was what mattered. I guess the rules are more important. Oh, well. We got one of those airport shuttles to bring us home and they were very nice. Luckily they were not too busy and we only had to wait about 40 minutes to get on the road. It just made the trip complete, we always cause a fuss, even when we try not too. I remember once I heard someone respond to a problem by saying, "oh well, it is a journal entry". That is so true, this was just a journal entry and I had too much fun on this trip to let anything be upsetting. I hope you enjoyed this journaling and the pictures of the trip. I loved sharing it. We will keep telling our adventures and the news as it happens. We have a lot coming up in June, scout camp, cancer camp, and an MRI. Watch for more posts and know that we love you all...............