"Stryders Journey"

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!

I got a call the other day asking if they can get a photo shoot for Stryder for the community calendar. I am really excited for him. I hope that he will be able to look back on this an see that he did something great, especially because he will have a lot of trials in his life.

His SLP said that we need to get more therapy for him, at least 4 more days per week. We found out today that our insurance will cover 120 visits if it is a developmental delay (which it is) so that was great news. It wasn't covered with Blue Cross Blue Shield.

He has an infection still and we don't get insurance for another month and not a paycheck until the 8th. We thought it was getting better but then today it was worse again. We are trying to see how we can get him to the doctor and pay later. If nothing else, the ER will have to do.





These pictures were taken the first day of school on September 14- I thought he was adorable! My mom took some yesterday of him sitting on a saddle with a cowboy hat. He wouldn't smile at all, but still looks so cute. I will have to get those and post them when she edits them.

Let me start by saying that my keybo0ard keeps typing in letters random0ly, so I apologize in advance. Not sure why it's doing it though but every time I type the letter "o" it types ano0ther in capital and will even stick until I type a new letter.

Stryder has started preschool, but he has no0t do0ne the evaluatio0n yet, so0 he can't ride the bus. He has that o0n October 15 so until then, I have to0 take him and stay in two0n until he is out because it's so far away. The teachers love him and say they want to 0take him hom0e with them. The SLP, Miss Mo is wonderful! She is really pushing fo0r us to0 learn ASL and feels that because he is so smart it's not goi0ng to be long before he starts getting frustrated. My mo0m and I are able to take two classes at the scho0o0l my daughter goes to0. so0 every Wednesday we are in school from0 8 AM until almost 11 learning sign language. I don't know0 ho0w I will ever remember everything, but I'm trying. Miss Mo is very impressed that he know0s ho0w to count and kno0ws all his co0lors. She said she started his testing fo0r speech and he is pretty severe, which we knew. He o0nly was able to say o0ne wo0rd with an ending co0nsonant: Brush, he said bus, but was not0 able to0 repeat it. If we work o0n it for a long perio0d, saying it o0ver and over, he can say dah ssshhhhh. So0 it's there almo0st. We are now at a cro0ss roads because he needs to0 learn how to0 read and write so0o0n and we (and everyo0ne is spending so0 much time with speech and no o0ne even kno0ws if he will ever be able to 0talk, what do we do? Just do0 signing and spelling with hands and let the therapists do0 the speech or what. Miss Mo thinks we need to0 mo0ve o0n, but no0t give up. I try not to0 be sad abou0t it, he really is happy.

Lately we have no0ticed that his feet and legs are not0 "right" - it's as if he is walking and has braces. I have known that he has lo0w muscle to0ne in his wrists and ankles, fingers and toe0s, but it's getting pretty bad. He can't walk withou0t bending his ankle. We went to0 find him so0me boo0ts to0 help suppo0rt his ankles until we can get insurance and go to 0the DR and went to0 mor0e than 9 sto0res. ALL thou0ght he was wearing braces the way he walked. I am able to0 take his fo0o0t and with no effort, twist it completely around. We are sure he will need some sort of brace to co0rrect it and make them stro0nger. I hate that he will have struggles that we do0n't have, but as I have said, he is a happy little bo0y and so0o0o0o0 eager to please everyo0ne.

Well, we made it! Stryder is doing great, although he does not want to be anywhere alone, in the house, outside, etc. We have spent the last few days getting information on new services they have here. We went yesterday to an open house at the pre-school program they have. I was very impressed and excited! Usually the children need to be 3 to start, but they are making an exception for Stryder. He will go on Tuesdays from 8:30 until 11 and then when he turns three he will go on Fridays too. They have speech pathologist and Occupational therapists there and the class consists of a 50% mixture of special needs and 50% who are not so they have good examples to look up to. He will be riding the bus, but we will transition into it.

The SLP was WONDERFUL! she gave us a lot of resources that we didn't have in South Carolina and even told us about an ASL class we can take for free. That really means a lot to us because it's the only way Stryder is able to communicate. She also gave us info on the children's hospital and how to get into their program and also will be starting a new class called Toddler Talk; this class will teach us proper ways of speaking to our children who are not able to talk.

I am very excited about the new services and help. Stryder LOVED the place and didn't want to leave so that was a great sign.

We will be starting with the occupational therapy soon. In the meantime, my Gray Haired Friend mailed us the book I wrote about in a previous post- THANK YOU Sharon!!!! This book has so many great tips and things that will help Stryder. He does not take baths without screaming terror and when he brushes his teeth, he gags even with the toothbrush on the outside teeth. The book says to put a weighted vest on him and do a few other things and it will help. Who would have knew that weight makes a difference, but I guess with sensory disorders it really helps. I should have known though, Stryder sleeps with a VERY heavy blanket, even in hot weather. Angie told me that most of us only know about the 5 senses but there are two others that are often haywire in kids with sensory disorders, which is Stryders Issue.

All in All, the move seems to be a good thing. I really miss South Carolina, but our son needs family help and support and it seems that we have a lot of resources that were not available in South Carolina, so I'm excited.