"Stryders Journey"

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:

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.

Stryder is only two, so most people think that a child that cannot speak at two, is not that unusual. I really didn't have a concern either, but after the initial evaluation, I have learned there is a lot to be concerned with. Of course, one of the most common things we hear is "My child didn't start talking until they were three," or "it's because his older sister does all the talking for him." That is just not the case.

Stryder is able to copy your tone or the tones of any song exactly. For example, he can sing his ABC"s but the words are "DA DA DA DA, DA DA DAAAA..." If you ask him to say the letter sound he can, except the K, G and Z. Stryder LOVES to learn and tries so hard. He will sit with you and read and learn for hours, not like most 2-year olds. He has sa very high attention span for his age and even plays games made for 6 and older. We even think he can read since yesterday the SLP brought out index cards with new words that he has never seen and he did the signs to them even before she said that word. We were in awe, and this wasn't the only time we have seen this. He has even done it with the EI, but with numbers.

Stryder knows his colors, although he cannot say them. Red is "EH" and happens to be the ONLY word he can say with a vowel first. Yellow is LALA and Green is NI. You can ask him to show me the red car and he will, brown, red, orange, any color.

The only words that Stryder can say clearly are Mama and Dad- all of the rest stem from those and ba and ne. Cookie is LALA and no matter how hard the SLP or we try to get him to change it, he can not-he is not able to make the K sound at all.

Other words that we know:
Car: BA
Truck: Ba
Jeep: NEE
Star: TA
Cow: Moo
Cat: MEME
Hi: HA
Bye: BA
Cup: BA
No: MU or most recently uuuuuu DU
Ice Cream: NENE

There may be a few more that I will add here as I get them. Most animals are the sound effects taht they make and not the actual name. He is also learning to sign and has picked that up very well, although his fine motor skills re very weak, another concern. He is not able to do the number two with his fingers but he can make a peace sign. He can sign airplane but not I Love you, which are the same except the angle- again it's a communication issue.

The SLP has said she has never experienced anything like this because he is not able to do a lot of things, even with practice although he can do things with his tongue that kids with Apraxia usually cannot do. His words are always the same, not changing at all, showing that it is not a muscle control problem. His words also have the right amount of syllables and the correct tone and emphasis on the right places.

Stryder has some flash cards that he practices everyday with very easy words such as Tea, Me, Tie, Bay, New, No, etc. As we go through them, he cannot say the word, but when you break it down such as Bay, he can say the B sound and then you say BAY he will say MU- something completely different.

The SLPgot him to use the K sound for the first time today by having him open his mouth and stick his finger on his tongue. He wouldn't bite his finger and the only way to make a siound was the K sound.A huge step for him and we are hoping with practice, it will get better.

I know the SLP wants to be positive, like me, but when you see the symptoms and signs and the eagerness, we know deep down there is something more than what is showing on the outside.