WOW! Today was a great day at the garage sale. I can't say thank you enough to those that organized it (Barbara and Dianne) and those that donated money and items for our cause. We had a great turnout and there is a lot more for tomorrow.

Stryder did great today, but I always worry about the aftermath because he doesn't complain about anything and seems so happy. He didn't complain at all today and was in great spirits. He had a big seizure last night-it scared me because he was stiff as a board and then just yelled and screamed afterward :( We came home today and he was crying and yelling and not happy. It was just too much and I have to learn to say it's time to go. He is asleep on the couch right now and my only hope is that he goes seizure free tonight.

Two more weeks and we go to the Mayo clinic. It's starting to really hit me: I will miss my husband and daughter terribly. As it stands, Stryder has appointments set for two or more every day for the entire six week period so I am hoping that time will go by faster and we will get some results, and good results.

We still need to send in our bloodwork for Dup 7 syndrome, and the answers will take 6-8 weeks. It will be good that we will be gone during that time so I won't be waiting for the results.

In the meantime, I have started to sell CTMH products and will be having more scrapbooking and card making workshops so that I can sell things to help raise money for other children that are going through hard times too. You can see some of my work at my NEW blog http://stryderslist.blogspot.com/.

Thanks again for all of the support- it means more to us than anyone will ever know!

We have stopped to smell the flowers:


Just a few more weeks until Stryder and I leave for the Mayo clinic for his intensive therapy/; it's been a long road. Prior to going to the Mayo clinic we were told that Stryder may never talk. After we got back, Stryder has learned a lot of new words, so I am very hopeful. I can't express what i feels like to finally have someone tell you that he will talk and actually see proof in it. Up to that time we only heard "I don't know what else to do for your son" and that was a hard pill to swallow every week. We tried everything, well not everything obviously, the thing that works was the last. I have felt that there is an end to this long journey and got reassurance that "Apraxia" will not be with him forever and for that, I am grateful!

Now, our new journey: he is having problems walking long distances and not even that long of distances. We went to the Shriners after he was evaluated and accepted and the Dr. there said that he has the same physical problems that children with Downs Syndrome have. I don't know what that really means but what I do know is that his legs start hurting just walking to the mailbox and you can't put him on your shoulders because his hips pop out. It really makes me sad because it seems as though it's getting worse for him. Just going around the block (it's a large block) we have to stop and rest for a good half hour. I don't know who we talk to about this or what to do. His X-rays on his hips look good so far, but we have to go back every year to make sure there are not other problems. He can walk and play inside okay, it's just the actual task of walking that puts pain on him.

I asked the question, "Who do I go see- anyone know?" on the Apraxia message board and it was brought to our attention that we should ask about EDs .
I remember looking at this before we went to the Mayo and I forgot about it with all the new information we got. Now looking back, it looks as though this may be worthwhile. When we were at the Shriners, they did the flexibility tests and he could touch his toes to his shins, touch the back of his fingers to his wrist, all of it. Next month while we are at the Mayo, I will at least raise the issue of "could this be Ehlers-Danlos?"

We finally got Stryders Speech therapy appointments scheduled for the Mayo Clinic. I am really nervous about going, but excited too. We will schedule the other visits that he needs as we are there. The system at the mayo is wonderful!

Stryder is doing great with his speech! I am so proud of him and I know that it is because of the prayers that everyone has sent us! He is able to speak many one and two word sentences, and clear at that. I am amazed at his progress! Miracles are happening abound here and I am amazed that God chose us to be a part of His Journey!

Also, Barbara, I call her our Angel, is getting a (or two) fundraiser going in our area. She has done so much work to get this thing going and words cannot express the gratitude that I have for her. Before she came along, I was so alone in all of this. I didn't know how to get money or help to get Stryder back to the Mayo or how to even get help for his therapy here. It's truly amazing what one person can do. (My sister-in-law Tera has been amazing too, a huge mental support, to say the least)

Here is a copy of the fundraising flier I designed with Barbara's help:

Just click the picture to make it full size and print:


A lot of us with children who cannot speak will have to guess what our kids do at school or daycare. Someone on the Apraxia message board put a great link to a resource that will let us know what our kids did during the day,but unfortunately, the site got hacked and the image is no longer. I wasn't able to save it so I did one by memory for those interested.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Our neighbors across the street came a couple weeks ago and said that they were having a garage sale to help raise money for the city, it was called "GeneroCity". It was the first time I met her and I was out making crafts to sell to raise money for Stryders Care, so I told her just a little about our journey so far. She came by last night and said that she asked her Pastor if we could set up a small table to raise some money for our cause and he said absolutley!

I met some tremendous people with big hearts. I sold the cards I made for $2 each and made close to $60 with very few cards. Neighbors in the area came by and one in particular, Barbara, came back and OMGosh, her heart was so generous. She wants to help us make some money by doing another garage sale, bake sale or handmade sale- something....She made me feel so good. I do not do these things for a handout, I don't want that. Yes, we really do need funds for Stryders treatment and ongoing medical issues, but I want to work for the money; I want to make things and sell them and I try very hard at that. My dream is to continue and make money for other people that have the same problems with their children and the medical help. We have great insurance and yet it still doesn't cover everything. The bill for the Mayo, for one week, was over $9,950- I can't imagine what someone without insurance, or even good insurance, has to pay. I want to help them and right now I want to help my little Stryder.

Crafting for a Cause! Let's join together and help people with our talents-

Yesterday my sister-in-law drove Stryder and I to the Shriners Hospital in Portland. It took us close to four hours, I think, but we stopped before the appointment and were able to have breakfast at Starbucks because my good online friend, Sam, sent me a Starbucks gift card- Thank you Sam!!!!!!!! It was a relief and a great break before a stressful day.

After our coffee and bagel, we went to Shriners. The people there were great! Poor little Stryder had been bent and fiddled with, but he did everything they asked. They were bending him all over and gasping at how flexible he is. They even tested me and said that I have some of the same flexible joints that most others don't have.

Stryder went in for an XRay of his hips because they seem to pop out all the time and the good news is that they look great! There is no damage or anything right now. The bad news: Stryder has the same physical problems that children with Downs Syndrome have, but as the DR. said "he obviously does not have Downs Syndrome." He said that they are the hardest children to work with because they can't do anything medically with them and things just get worse as they get older. The Dr. told us that after the age of 4 or 5, closer to 6, they start to show the problems in the hips, but again, can't do anything about it really. He said he calls them Gummy Bears and that is the perfect way to describe Stryder! I have always felt that he feels almost dead like the way he squishes, but gummy bears are so much more appealing (and squishy). My sister-in-law said that we will just call it the Gummy Bear Syndrome. How else do you explain to people that he has these problems?

I suppose that means he is a Shriners baby now :) We go back next year to check for anything that might be problematic and every year after and just pray that he doesn't get any worse and just stays flexible only.

Stryder fell the other day and got a HUGE bump on his head. This is the second time in a week that this happened. The next day it looked better and then yesterday he bumped heads with the dog and it came back. It's HUGE and makes my stomach turn whenever I look at it. It's really been a rough week. I'm not sure why he is not catching himself when he falls.

We got a call from a DR. the other day asking us about our family history. We were on the phone for close to 2 hours while she asked every question about every member of our family up to grandparents. It seems they think he may have a duplication of chromosome 7. I won't go into detail on it, but he does have all the symptoms such as short neck, hip dislocation, hypertonia and more. They say that children with this disorder can have a shortened lifespan, but I am choosing to not find out what this means until we know for sure that he does have it- they are sending a test kit soon.

We got a call from quota club yesterday and they want to pay for his therapy in MN when we go in October. It would have been $1500 just for therapy while there. Words cannot express how grateful I am for that. His medical bills from the last time that the insurance isn't covering were staggering and it will be so much more since we will be there for 6 weeks, so the $1500 for the speech therapy is a BIG help. They will send a check directly to Dr. Strand as soon as I get her address.

Stryder goes to Shriners next week. His hips and legs are getting worse. When he walks, his feet will often get caught in each other because of the way they twist; this is probably the reason he is falling so much. They may not be able to do anything for him, but we won't know until we go. I think this visit is just the consultation.

On a good note, Stryder is starting to say so many new words. I think his seizure medication is really helping him. He still is not able to combine two words together too well, but he tries. He can say Hershey now and will often say "Hershey NANA" which is Hershey, Kennel!" I am working on "I want that," but it's really hard for him. He is able to say the words individually, except "want" is hard, but put them together and it doesn't make any sense. He is trooper though and tries so hard.

I know that people do not truly understand that when I say that Stryder cannot speak, I really mean he cannot speak. I have seen some improvement since he started on his seizure medicine; he is actually attempting to get all the letters in his words. For example, if you ask him to say the word "Start" he will say something link "tahts." He knows what letters should be in the word and make all the sounds, but just not in the right order.

Stryder can say "Big," sort of: he says "Beee" but when he is reading, he can say it correctly, putting emphasis on every letter. BiiiGGGG- The same goes for the word "small" which is usually naa- when reading he can sound out every letter and get it right. This gives me hope that maybe through reading he will be able to start saying words. I am sure it is a lot like singing though. Stryder can sing a tune, even though the words are not there his tone and rhythm are perfect- but speech and music use two sides of the brain. When we go for intensive therapy, I will be sure to ask Dr. Strand or Becky about this.

Stryder had a seizure this morning.
We started out with a rough nite. Stryder went to sleep early, probably because he did not have a nap. I woke him about 9 to give him his medicine and he fell back asleep. He started out in his bed but woke and came to ours and didn't stop moving all night. I finally went to the couch to sleep. Stryder decided that he couldn't sleep either and joined me at 2 AM. I went back to bed at 4 when Warren had to get up and go to work, he put Stryder back into his own bed. Again, that didn't last and this morning while he was in what seemed to be deep sleep, he growled like a dog while his body got very tense and his left arm was jabbing into him. His face was very rigid and almost scary looking but as it ended, he was still sleeping.

I really hope that he is on the right dosage for his medicine, it's very scary to see him go through this. I still picture the brain damage that the DR. showed us and wonder if it gets worse when he has these seizures. All this worrying is stressful.

On a good note, Sharon with CASANA emailed me with some therapists in the area-well as close as I will probably get- and I was able to call and/or email them and got a couple responses. Stryder will need therapy 5 times a week and our insurance only covers 60 per year and 120 if it is a developmental delay, which it is, so that comes to only 2 times per week and we still have to pay the $25 for each visit. Oh this will be expensive- and to top it off, we are still not done with the testing.

I am excited to get a hold of a couple of therapists that might be able to help Stryder and am hopeful that he will get the sessions he needs. His speech seems to have become so much better since taking the Keppra. He is trying to add more letters to words and even though they are placed in the wrong places, he knows the words have them. It's actually kind of cute.

We got more results in the mail today along with new diagnosis's - Stryder has always had a hard time with certain expressions such as "How are you?" or "What did you do today?" etc. I wasn't sure what it meant, if anything but the new diagnosis really explains what the problem is. We are not sure if it is because of the seizures or if it is the result of the damaged areas in the brain that we saw on the MRI. We just hope that it will get better.

Definition of Expressive Language Disorder:

Expressive Language Disorder is a learning disability affecting communication of thoughts using spoken and sometimes basic written language and expressive written language. This disorder involves difficulty with language processing centers of the brain. Expressive language disorders can result from inherited conditions or may be caused by brain injuries or stroke.

I am working on his video now and will have it loaded soon.

Stryder has been having seizures for a while now, although we didn't know that's what they were. Two doctors have seen slowing in the language area of his brain and they also found some parts of his brain that were damaged. That's a hard thing for a parent to hear. Stryder is now taking Kepra, which may have harmful side effects, but so far I don't see it-sometimes I do wonder though.

I took some video of him playing and singing tonight. I will try tom upload it tomorrow.

Here is some info from the Epilepsy Foundation:

Seizures and Syndromes

I found this letter on CASANA's website. It's pretty much perfect for any child who needs a little extra from a caring teacher.

My Child Has Apraxia..

Dear Teacher,

This year you'll be having my very special child in your class. When you look at my child, you will see eyes that light up and are full of life. My child has many wonderful abilities and talents. He or she looks like the other children in your classroom. But my child has lived with a lot of silence and a great struggle to communicate. My child has Apraxia of Speech.

Childhood Apraxia of Speech is a speech disorder that makes it difficult for my child to correctly pronounce syllables and words. Children with apraxia know what they want to say. The words are in their heads but often the child is not able to produce the words clearly. For unknown reasons, children with apraxia have great difficulty planning and producing the precise, specific series of movements of the tongue, lips, jaw and palate that are necessary
for intelligible speech. As one expert has said, “The problem occurs when the brain tries to tell the muscles what to do -- somehow that message gets scrambled. It's like trying to watch cable TV stations without the right descrambler. There is nothing wrong with the TV station, and nothing wrong with your set. It's just that your set can't read the signal that the station is sending out. The child must figure out how to somehow unscramble the
mixed messages her/his brain is sending to her/his muscles”.

Children with apraxia, however, do understand language and speech. Yet others might mistake and misjudge their unclear speech or quietness as a lack of intelligence. Many children with apraxia experience a great sense of failure and frustration in their attempts to communicate. Some children grow even quieter; others may act out their frustration. Children with apraxia need the support of teachers and parents.

Each child with apraxia is a unique individual, with their own set of abilities, needs, and challenges. However, one common theme is that for some period of time, children with apraxia of speech need frequent and intensive speech therapy that is targeted to their greatest challenge so that they can learn to accurately produce syllables, words, and sentences. These children truly need the services of the Speech-Language Pathologist (SLP).
The SLP can work with you to help create a way for my child to communicate with you and classmates, demonstrate what he/she is learning in your class, and to continue improving his/her speech ability and communication. In addition to actual speech skills, at some point of time it is likely that my child will also need to work on expressive language and conversational skills.

Thank you for taking the time to read a little bit about my child’s speech disability.

Please let me know if there is anything I can do to help you better understand my child and his/her needs.

Here are just a few ideas about what can help my child in your classroom.

What you can do:

 A speech-language pathologist (SLP) needs to help my child
learn to speak with more ease and clarity. It will help my child if
you communicate frequently with the SLP and determine if there
are things that you can do in the classroom to help my child communicate and practice speech.

 Try to create a tension-free and interesting “communication
environment” for my child. Encourage but do not insist he/she try
to speak. Praise his/her attempts at speech, if only for effort.
Please know that sometimes my child might not respond or
might respond “I don’t know” as a way to help themselves get out
of a difficult communication challenge.

 Be patient. Sometimes the fast pace of others can leave my
child out of the experience although he/she may be able to successfully communicate if others just offer a bit more time and patience.

 Watch for and even create opportunities to help my child make friends. It can be difficult for a child with apraxia to “break into” social communication and situations. A supportive and nurturing
teacher can surely help. No child should be lonely and all children need a friend.

 Intervene immediately in any situations that involve bullying or teasing. Reassure my child that you are his/her supporter and advocate and that no teasing is acceptable.

 Be aware that sometimes children with apraxia are also physically uncoordinated, making competitive sports or even drawing, cutting, and other motor tasks difficult. If you notice something, please do bring it to my attention so we can work together to help my child.

 Keep alert for any other signs of learning difficulty. Sometimes children with apraxia have difficulty learning to read, write, spell or do math.

 My child may need to communicate in alternative ways. Often sign language, augmentative devices, or pictures can help my child as a bridge to clear speech, helping us gain insight into his
or her thoughts.

 Most of all, please include me as your partner. I want very much to help my child and to do everything possible to support you as my child’s teacher. I hope we will always reach out to
communicate and share information with each other for the benefit of my child.

Stryder has started to take Keppra for his seizures. I was really worried about giving him medicine of any kind, especially one that can have very severe side effects. He was on half dosage the first week and now is taking the full dose. Every little thing he did, I was worried it was the medicine, but wasn't sure because we just got back and it could have been readjusting. Yesterday was a great day for him though and he seems happy again today. He is still waking at night, but I don't know if it is the seizures or not.

Here is where I ask, beg and then plead for your help...if you have frequent flyer miles or access to buddy passes~PLEASE consider helping us fly back to the Mayo clinic for more testing and intensive therapy.

You can contact me via email, facebook messaging or commenting on the blog or facebook link for more details~especially about giving frequent flyer miles~I have investigated the whole gifting frequent flyer miles plan and know that it would take anywhere from 45,000 to 52,500 frequent flyer miles to make this round trip happen and that it is cheaper and easier if the "gifter" just purchases the ticket versus "gifting" it.

The cost for us to go right now is about $600 per ticket.

Catastrophic.

I had never considered Apraxia of Speech to be a catastrophic, before now.



But it was...and before my conversation with Dr. Strand, I had no idea the real definition.

Catastrophic illness is defined as any illness that requires lengthy hospitalization, extremely expensive therapies, or other care that would deplete a family's financial resources, unless covered by special medical insurance policies.

Not only that, we are still trying to diagnose him on other issues such has his mobility--
My child has a neurological condition that could have a good prognosis, IF he had the proper treatment. Treatment that our insurance company called a luxury. You read that correctly, UnitedHealth Care actually said that speech was a luxury during a phone call. EASY FOR THEM TO SAY....they have a voice.

Apraxia

Apraxia has several definitions as defined by LoudMommy.com ~

A severe speech disorder characterized by inability to speak, or a severe struggle to speak clearly.

Apraxia of speech occurs when the oral- motor muscles do not or cannot obey commands from the brain, or when the brain cannot reliably send those commands.

Verbal apraxia is a disorder of articulation characterized by difficulty with sequencing and organizing motor or muscle movements specifically for the production of speech. It may also be described as the impaired ability to motor-plan.

http://www.asha.org/About/news/Press-Releases/2011/Parents--Don-t-Hope-Your-Child-Will-Just-Outgrow-An-Early-Language-Problem.htm


Original Post from: http://maggieandluke.blogspot.com/

We got back from the Mayo clinic this week. We did get some answers, but one week just isn't enough to figure out everything!

Monday:
We met with Dr. Renaud
She said that she had the week already full of all the tests we were going to do. She asked a lot of questions, but had all the papers we sent prior to coming.
After meeting with her, we went to get urine and blood tests. She wanted to test for over 200 metabolic disorders.

We also met with Becky, a speech pathologist that works with Dr. Strand. Becky was great- When we went in there, Becky knew right away that Stryder had severe Apraxia, when no one has been able to tell for sure. She showed us the graph where his speech falls and the "dot" wouldn't even be on the graph so >1. His expressive speech is showing slowing too, because of this. She told us that she would try to get us to see Dr. Strand this week, but her schedule was very full and we probably would not.
Tuesday:
I can't really remember what tests were done this day LOL, but it was full of wandering the Mayo Clinic

Wednesday:
Consultation for sleep- Stryder doesn't sleep very much at all. Most nights he gets about 5-6 hours at the most and doesn't take naps too often during the day. He also wakes up at night a lot.

We met with Dr. Strand and I was so impressed with her. She immediately said that she didn't have a lot of time, but squeezed us in. Her ten minutes turned into over an hour! Dr. Strand is the BEST known speech disorder Dr. in the world! and to get a chance to meet with her was an honor. We were told that it wouldn't happen, she doesn't see new patients and rarely works with children anymore.

Dr. Strand reaffirmed the Apraxia diagnosis and got so happy when she was talking with Stryder. It was such a wonderful feeling knowing that someone had such compassion for someone they didn't know. She talked and talked with Stryder and even brought in another DR. just to show that Stryder had EVERY single sign of Apraxia. Unfortunately, Apraxia is over diagnosed so when therapists see it, they don't know what the real thing looks like.

Dr. Strand said that with extensive speech therepy five times a week Stryder may talk by second grade, without that-eighth grade. She wants Stryder to come back for 6 weeks for an extensive therepy session with her and Becky, twice a day with follow ups after. She was so excited to meet a child like Stryder, so willing to learn and so happy. I can't tell you how this made me feel as a mother to have someone so interested in his future. She also wants to include him in a Study .... We are waiting to get the documents from the Mayo for more Info.
Dr. Strand said that she would like to see Stryder September 10 until October 21, we just have to find more $ to get there.....

Thursday:
Results for the Sleep study were a shock! Stryder is having seizures at night-that's why he wakes up so much and doesn't sleep. He also has sleep apnea and kicking legs. We are treating the seizures with Keppra. It can change moods so I am on watch and very nervous that he has to be on medication now. They want to do more studies if we come back.

More results on the tests. Most things came back negative, but they want more tests. One of the Dr.s feels he has a disorder that is not a positive one at all, but until we know for sure I won't even talk about it or what it is. I don't want to worry about things that may not be there. He may also have Celiac disease. They did a test, but his levels were a little off and a different test is needed to determine if he has it. They also want to do more stool tests when we go back for the six weeks in September.
The Mayo clinic is amazing. Every DR. we met with had the previous Dr.s notes and if we had to do more tests that were not scheduled, we just went. All the buildings are connected by sky walks or pedestrian subways-you never have to go outside. We knew the paths pretty well but when we decided to venture outside we had no idea where we were.--
So now we have to raise more funds to get back for more testing and more therapy. Still to come are some genetic tests, Celiac disease and some stool tests--

Stryders surgery went very well. He did great, as usual. The Dr's and nurses are always amazed when he wakes from anesthesia that he just wakes and doesn't fight or cry like most. The Dr.s did say that the lymph node was larger than he thought and did look to be abnormal :( We have an appointment Monday the 6th to get results. I am still optimistic that it is not cancer and something else that can eventually be treated. I am so thankful that he is a happy little boy, even after surgery-- he had three stitches inside and 5 outside his neck. It's very small but he has a huge bandage which makes it look worse. He's such a trooper.

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.

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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!