"Stryders Journey"

Another night of Stryder throwing up all night!?!?!? He got up this morning and was ready to go for the day.

Stryder was up sick all night last night. Every 15 minutes he was throwing up until almost 7 this morning. Now, he is outside playing like nothing ever happened. He didn't have a fever and was a little quiet during the day, but no other symptoms. It was a horrible night and he didn't know what to do about it. I stayed up with him the whole night, and he was awake for most of it too, but now he is playing like he had a great nights sleep. No one else is sick and we don't have any symptoms that we will-I'm crossing my fingers that tonight we all sleep well and don't come down with anything.

Stryder got a hair cut, finally. He tried to tell the lady that the water was too hot when she was washing his hair, and got pretty upset but she is the only one that is allowed to cut it. They donated a hair cut and a T-Shirt for the auction: Thank you Cougar Cuts! Getting anxious for the fundraising and hoping for a good turnout-

First, I want to say thank you for spreading the word about Stryders Digital stamp-we really appreciate it and we got quite a great response, so Thank you all!!!!!!

On Monday, Stryder had an ultra sound to compare the size of the lymph nodes on his neck with the ultra sound from March. I thought I could see a size difference on the screen, but as it turns out, the technicians can re size the images to what they want.

Yesterday we went to see Dr. Renton, the ENT, to find out what we do next, if anything. As he walked in Stryder turned his neck sideways immediately. It was rather cute, but it made me realize how many times we see the DR. about his neck.

The Dr. started to tell me his thoughts but then said "Read this," as he handed me a piece of paper. My heart dropped as I thought bad thoughts that he just couldn't say. But as it turned out, things we not that bad. He then told me that this was the time when he and I had to have a candid conversation about what should be done at this point.

Dr. Renton had said that the nodes had not changed for the most part, although one did get larger by a bit. That can be a concern in itself, or not- but he also has night sweats and hasn't gained weight in several months and said that because of all of those things he wanted to do surgery and take one of them out.

I went in yesterday expecting surgery to be the next step because these nodes are just not going away and because last time I went expecting to hear good news and didn't. I really feel that these swollen and hard nodes are symptoms of his body fighting off whatever he has that is undiagnosed and not cancer, but as the DR. said, there is only one way to tell and that surgery will help both the Dr. and me get over the "what if?"

They were very nice there, and the scheduling nurse was very sympathetic as I'm sure she sees a lot of patients that end up with the not so good outcome that may happen. Stryder's surgery is on May 27th, the day before his fundraising event. The Dr. said that he will have a splice in his neck and a bandaid, even told Stryder this, but he shouldn't be in pain the next day from it. He really took the time to tell Stryder and me about the surgery and steps and even had me feel the node he will be taking out. He said that we need to call him the day before to make sure that we can feel it because it tends to go behind a muscle and hide sometimes and if that happens they will do another ultra sound to mark it.

Of course, as with any surgery, there can be complications, one being that there are a lot of nerves in your neck that can become damaged. Dr. Renton chose a node that was smaller than others to avoid that risk as much as possible though and the closest nerve would paralyze the shoulder shrug. The Dr. believes at this time the risks outweigh waiting and watching them to see if they progress. I know that Stryder will be strong during all of this and I believe his happiness will help make this journey less bumpy. I am also glad that this will be done prior to going to the Mayo clinic so that it will be one less thing while there and maybe one more "clue" to answer some of the questions we all have.

We are in Dire need of help...Please spread the word about this digital stamp
You can get it here for only $5 for all three images

Stryder had another check up Monday with the ENT. He has several swollen lymph nodes on the left side of his neck that look like a string of pearls. I went to his PCP about 6 months back and she said to wait 6 weeks to see if they go down. I knew they wouldn't because they were already there for more than 6 months, but they have to check. She also did a blood check and said that his levels were high. She then referred us to an ENT who deals with small children and cancer. He looked at them and of course said that they do not follow the typical pattern of anything and wanted to do an ultra sound, so we did.

The US came back showing them not too abnormal and that they were on some nerves and a biopsy could potentially paralyze him. The best thing was to watch them and come back in two months to see of they would have shrank or anything has changed. He said that if it is cancer, it's slow growing and we can still catch it.

We went back Monday and I FULLY expected to hear, oh, they look good, move on. But that's now what happened. He now has them on the right side and the left side is no longer just a string of pearls. So, another ultra sound on Monday to see how much change and determine the best place for a biopsy. We meet with him again on Tuesday. I was blown away and had a horrible day, not expecting to still have no answers and still have to move towards the thought of Stryder maybe having cancer.

After that appointment, we went to another speech therapy and once again she has no ideas on what may work for him. Stryder is so intelligent and so eager, but his word associations are so off the wall. She offered one suggestion, again, not knowing it will work at all: Stryder can say the word NO, but not for the word no, for that he says MOO. We know he is capable, but the word No to him is MOO (yes, like a cow) and no matter how we try to get him to change the word to NO, he can't. We did see that when he sees the letters N-O- he will say NO, so that's our plan-write the letters on his hand and have him look at it BEFORE he says the word and set him up for it. We have no idea if that will work or not, but we will see. I did try something like this with the word OUCH and BUS. When we started his word for bus was BU, but now it is BEE, which made it worse LOL.

We are working hard to get our Karoaoke fundraiser going and also raising funds so we can go to the Mayo Clinic in MN. So far, we have the hotel done and the airfare is waiting to make sure there is room for us, but it is paid. It's a huge relief. Now we are working towards the food and DR's themselves, plus trying to prepare for the unknown when/if we get a diagnosis. It's pretty scary living your life without knowing what the future may hold.

Please spread the word about http://stryderlist.com
It's a great place to share craft stores and events in one place and the listings are free.

I suppose I should start keeping up on this blog- I apologize for the long break, things just got a little out of hand recently.

Stryder is doing great! He got his new iChat and can even bring it home. The hard part is remembering to use it all the time. He is pretty shy at school with it and the other day we went to watch part of his class and he was so quiet, wouldn't say a word the whole time. I suppose that is where his disability really shows. We were told that the Mayo clinic may have a better machine they might recommend for him and his needs, but right now I love that he has a way to say things he cannot.

At home, Stryder plays with it a lot, trying to get used to all the buttons. He is a fast learner, which is great! Dad, on the other hand, is having a hard time LOL.

We went to a Shriners clinic where they determine children who might need services through them at Portland. They were so nice and said that whenever we need anything, to just call. I'm sure they understand the stresses that come with the problems our children have.

The DR. looked and watched Stryder, twisted his arms and legs and said that it wasn't normal but that Shriners deals with the skelatal system and not the ligaments and things and would probably look at him and say nothing was wrong, when obviously there was. He then was watching him walk and jump and realized there was more to it than his loose joints and had him lay down. That's where he moved his hips around and said "Oh, now there is a Shriners issue." Needless to say, Stryders Hips, Femur and pelvis are whacky and that is probably the cause for the way he shuffles, not his loose joints. He went on to say that Stryder has two issues: One is metabolic and that the Mayo clinic is the absolute best next stop and glad to see we were going. Two, he has some hip problems that may or may not be able to be fixed until Shriners takes a look.

It was disappointing to say the least. I was really hoping that it was one thing and one cure- although we know there are other problems, at least that his joints and muscle tone were one.

It's hard to watch him walk when he is tired. He almost looks like someone is dragging him. his ankles turn completely in, too. But, he keeps on going, acting like nothing is wrong.

I am excited about going to the Mayo clinic, but nervous at the same time. We have to check in for his first appointment at 7:30 in the morning and the entire week is DR's. We have been blessed with enough donations to get the hotel payed for already. We were going to stay at the Ronald McDonald house but they do not take reservations and we wouldn't know until we got there if there was room, and they are pretty full right now. This way we can buy groceries and cook in the room, save us some money-we hope. The flight is almost taken care of too. I should find out in the next day or so. Now we just have to get enough for the DR's themselves- oh I'm not looking forward to that.

We also have another appointment next week to check the lumps on his neck. I haven't been watching them at all, but I am sure counting on all the prayers kicking in and that we don't have that to worry about too. I'm pretty confident.

Oh, and one last thing. I have started a non-profit organization in honor of Stryder. It's a one stop crafting directory and more. We plan to have monthly classes and events, plus everyone can put their blogs on there, stores (online and brick & mortar) and even put reviews of all those stores. All money raised will go to pay for other i machines for children who do not "have a voice". Most of the states already have stores located in them, but I am adding them one at a time- the great thing is, you can add any you know of too. It's very easy!

Come take a look at http://StrydersList.com and let me know what you think!