Stryders Fund

Stryder has an account at Mid Oregon Federal Credit Union under "Stryder Doescher".

Please spread the word about this digital stamp
You can get it here for only $5 for all three images

Powered by Blogger.


Stryders List

Visit Stryders List - Crafting for a Cause! A crafting directory with craft events, stores and reviews all in one place!
Friday, October 1, 2010

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.
Thursday, September 23, 2010
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.
Wednesday, September 1, 2010
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.
Saturday, August 14, 2010
Stryder had his last OT session on Thursday with Angie. She is very sad that she will not see him. She said that we need to hold off on "brushing" him until we get over there because right now there are a lot of other stresses that he will have to seal with right now. She reminded me how important it is to get an OT ASAP when we get there and told be to purchase a book called Tools for Tots as soon as I can. She said that it has a lot of detailed info on some of the "habits" Stryder has and some good ways to deal with them. We won't be able to get it for a while though, this move and the DR bills are eating away at every last dime we have.

We are talking a lot about airplanes and going in one and once we make our final landing in Oregon, we are going to go to McDonalds to let him play before our 3 hour drive. Stryder loves NaNa Naaa as he calls it. We need to give him as much normalcy as possible and give him things that are familiar as much as we can as to not disrupt him and make him more anxious than he will already be.

Tomorrow we are going to go around and take lots of pics of the area, to remember where he spent the first few years of his live. I am going to miss it here too. We also have to go to the store and get some medicine to help relax him, but tell him that it is good medicine and "let him pick it out" so we have a better chance of him taking it. I don't foresee any problems on the airplane, but sith Stryder having Sensory integration Disorder (on top of everything else), we are just not sure what to expect. He is a great kid and will do anything you ask though.

Tonight, we went to Walmart and Stryder started to organize all of the soda packs and this lady was so amazed, stopped and watched him organize. It was rather cute to her, but not so much for us anymore LOL. He walked around saying some conversation, but it was obvious it was something important, we just don't know what.

Stryder has his speech therapy on Monday and then the Early Interventionist will come to see him on Tuesday. I'm really sad that we will not be with Jayme anymore. Stryder loves playing with her and she does so good trying to get him and his mouth to do what it should. She is even often sacrificing her own fingers to hold his tongue down, to no avail LOL.

Things are great with him right now, although he can't shake off his sickness. I hope that he gets rid of it before we leave. Even when our AC went out and it was 96 in the house, Stryder would not take off his shirt and he had to sleep with a thick flannel blanket. We didn't know this was common with kids with SID- they call it a weighted blanket. Kasiah said "Mom, look, his hair is brown!" It was brown because it was wet from sweat. We put a fan right next to him and tried to remove the blanket when we could. We are learning new things all the time, and new ways to help him and us cope, so I'm sure there will be a lot of bumps along the way.
Tuesday, August 10, 2010
I finally got a video converted. I have a few more that I will be posting too.
Stryder is outside playing. He is so complaint with everything, and will do everything you ask, we are working on giving him his own voice.

Most parents think it would be great to have a child that will listen and do what you ask, but it's not and I feel sad for him. He will do things that are even uncomfortable and not talk back about it. He is unable to make choices for himself, too. One of the 'tests" that Jayme keeps repeating is asking him what he wants and making him choose while playing with things such as play dough.

For example, Stryder said that he wanted green playdough and there were two different greens. Jayme held both asking which he wanted, but he would point to both and say the last thing you say. Jayme wanted to test this by putting her shoe in one hand and asking. Again, he wouldn't choose, pointing to both when it's obvious he would not want to play with. I am going to try to get a video of this but Stryder tends to not want to do anything when he is on camera LOL.

Here is a video of him playing and talking in the front yard. At the end you will see Jayme show up, she is his speech therapist and he loves her- it's going to be hard to leave such a great person, but hopefully we will find another great therapist. It's going to be a lot of work0 I have to get him tested for the preschool program in Oregon and line up all of his therapy there.

Friday, August 6, 2010
Stryder had his first appointment with the occupational therapist and she went over his results. The poor little boy has been stressing about things- We have to take this brush and "brush" him on his arms, legs, back, feet and hands, and then we have to pull and stretch all of his joints ten times each- once every hour. We also have to do strokes inside of his mouth, top and bottom, before he eats and in between each eating. He really hates it, but it will be good for him and when he has an "episode" in the future, we can brush him to calm him. It's all foreign to me, but everything made perfect sense when she was talking about it.

Stryder gags whenever we (or him) try to brush his teeth and he chokes on almost everything that goes into his mouth at some point, although he doesn't swallow it. When he is on your shoulders, he will not hang on, even if you try to make him fall backwards, all of this has to do with sensory integration and balance. It's amazing how it all intertwines, but it makes a lot of sense as to why people assume he has autism, when he doesn't.

Oh and that reminds me. We went to a meeting with the school district to see if he would qualify for the preschool program and the school district manager (Dee) feel in love with him. She said that she foresees him in the program. She even picked him up, hugged and kissed him-although I did find it a little strange, but it just shows how adorable he is. Even Angie (the OT) said she has never seen a two-year old sit so long listening to nothing -Stryder watched her the entire time telling me about his results and the things we will be going through. Mandy (the early interventionist) said that she has never seen Dee hug or pick up any child in the 7 years she has known her and thought it was strange. He just has a bog heart and people want to be a part of his life.

I have some videos of him, I know I keep saying I will put them up, but he has been sick and I haven't had the time to do anything and living on an hour sleep at night. Warren and I try to take turns sleeping on the couch, but since he has to work, I usually take the weeknights unless Stryder has some really rough nights like he has been. I will get the on here as soon as I can. He is so adorable and cute. He is like a magnet to everyone and every animal.

We got our plane tickets and Stryder and I will be flying to Oregon on August 18. My mom is excited and so is Warren's family. There is a big family reunion the last weekend in August, so we will be going to that. I just worry because everyone always wants to pick Stryder up and hug him and he HATES it and can't tell them so. I don't want to over protect, but I don't want to cause more stress for him either.

I will try hard to put the videos(s) on this weekend for ya'll.
Thursday, July 22, 2010
Hi everyone, sorry for taking some time off here. We have a lot going on right now. Stryder is doing wonderful. We had another evaluation for Occupational Therapy and the good news is that he qualifies for the therapy, the bad news is that he qualifies for the therapy. :) Angie is her name and she will start soon. She said that things will get much worse before they get better. The first thing she will be doing is brushing hi body. Sounds weird but I guess it's a technique that works with kids like Stryder. She diagnosed him with Sensory Integration Disorder and when I looked it up I was amazed that we never knew that before, although they were trying to get him evaluated for a long time.

We just realized the other day that every word that ends in "y", like bunny, money, funny, crumby, baby, etc, Stryder uses the word mie mie (long e sound). He also does not know how to make decisions. Stryder said he wanted the green playdough when they were playing and Jayme had two shades of green so she asked which one. He kept pointing to both, which we knew he would do with any choice he has to make, but Jayme wanted to put it to a bigger test so she took her show off and asked which one pointing to the shoe and the playdough. Again, Stryder would not choose, knowing full well he wanted the playdough and not the shoe. We are not sure what to make of it. He is so compliant with everything, even if he doesn't want to do something, he will just because someone told him too. Even during the eval, Angie asked him to help take his shirt off so she could see if he had the muscle tone and coordination to do it. He did, but then stood there, panicking, shaking and turning blue from fear, and looking at me as if to say "Help me plase" but he never did tell her to stop or push her, nothing. It's the saddest part of this whole thing: knowing that he cannot/will not express his needs and wants.

I will be posting some videos of him very soon. He's so much fun to watch- In the mean time, we are moving back home to Oregon in a few weeks. We love it here in South Carolina, but we need our family and friends for support. It will be so good for Stryder to be around his cousins who are the same age too. I promise to update here more often and apologize for the long break.
Friday, June 11, 2010
On Wednesday Stryder went to MUSC for his appointment. The reason we got in so quickly is because the DR requested to see him thought he had autism. I explained to her that on paper it looks like it, but we honestly didn't think he has autism. She observed him playing while we talked and said that she would like to do the test because he was showing obvious signs. We talked a little about it and decided taht the test would be good so that we would have it documented either way, but I explained how she will see how well he plays with adults and interacts, etc. Stryder is very detail orientated and when he plays by himself, this can be construed as autism.

Needless to say, Stryder does not have autism. She said that we will probably have that brought up during every appointment but at least we will have a diagnosis to show people. She said that he was an interesting case and thought there might be something that neurology can help with. She was a psychiatrist and was not authorized to make other opinions. The neurology department had a waiting list of more than 6 months so we have to get an EEG and get bumped to triage so he can get in there first.

She also said that he needed an occupational therapist OT) which we knew and were trying to get it going, so she made a prescription for an eval and one time a week therapy. Poor Stryder, a lot of therapy, but at least there is a lot of playing :) I think it's worse on me though--

We have an appointment in 6 months for a with pediatric development. She wanted to make sure that we got all of our testing and also that genetics were done prior to this appointment. So, for now I need to get an EEG scheduled, make an appointment with his Pediatrician and wait for some answers, more than "this little boy is very intriguing."
Saturday, June 5, 2010
We went to the zoo last weekend-- We get a pass through Warren's work, so it makes for a fun day. Tomorrow we get to go to another baseball game if we choose to-box seats so we can stay out of the heat. Stryder really loves his outings and they are so good for him.

Kasiah - big sis

Stryders Big Syssy :)

Tickling Gorilla Toes :)

Too young to Drive--

He looks so Hot here :)

Stryder loved how this giraffe was eating-

Of all the animals, the fish were Stryders Favorite--

We got another call from the Children's Hospital and they said that we will be there for 5-8 hours testing and to bring a lunch and snacks-it will be a long day. They also told us that the new amount out of pocket was double what we were told two weeks ago because of different testing they want to do :( It's something we have to do, we're just not sure how.
Friday, May 28, 2010
Yesterday was a good day for Stryder- He had a good therapy session working on some words. He knows all of his colors- Yellow is LaLa, Green is Neee, Red is eh, purple is PoPo, Orange is dooo, Blue is Bu and he has even learned black, grey and brown. He did great at signs too. He would point to an apple and sign it saying the word -baba. He is able to say the word Bee great and found a game with a bee on it, repeating the word over and over, very proud of his accomplishment. He also kept repeating Oh Maaaaannnn sarcastily, although he would say oooo naaaaaa, but it's clear what he is trying to say because his tone is so accurate. He also sang his ABC's for Jayme, singing right on tune, but using lalalala. It's just amazing how his tone and syllables are right on, better than anyone I know, but the letter sounds are not there. It's actually quite adorable watching him talk because he is so expressive. I will get some videos on here to show just how adorable he is.

After therapy, we went to the pool where he got to play with lots of other little kids. He tried talking to them and one little girl was so mad because he couldn't say her name, she was in tears but they just don't understand at that age. There was another little boy there the same age as Stryder an he was cute, but very into the terrible two's. He has an older sister the same age as Kasiah and his mom said that she was told her son wasn't talking because they did it for him and that is what could be wrong with Stryder because her son now talks very well because they made him talk instead of doing it for him. We get that a lot and it makes me mad because Stryder does talk, it's just that he cannot be understood, but I shouldn't let it get to me. After they listen and see him talking, they can see that he does try, he just can not. He tries so hard though. It's just so amazing to see other kids his same age talking away. Stryder is so little that not talking doesn't seem too abnormal, he is still so young- that will change as he gets older, but as long as he is learning how to communicate in his own way, he will do great.
Wednesday, May 26, 2010
Yesterday Styder had lots of therapy, for several hours. He is so cute and tries so hard. Jayme tried to get him to make a "g" sound, but he just can't get it and we tried every trick LOL. He loves playing with his therapy "friends". We will keep trying for a new word and are hopeful, but realistic.

We went to a baseball game on Sunday and we got boxed seats through Warren work. Stryder loved that he could go in and out he door and did so probably 200 times. Every time he would come in he would talk to whoever was sitting in front of the door and the poor man that was sitting there had no idea what to make of Stryder because he would come through the door and start saying something and since 80% of his words (and almost every sentence is dadadada) are dada the guy thought Stryder was calling him Dada. It was quite humorous actually and that guy just kept saying "I'm not your Dada," and Strdyer was having fun knowing full well that he wasn't dada. Kasiah had a blast too, although she is turing ten in a couple weeks and is at the age where she thinks she has to look and act "cool". Last year when the costumed people would come to her, she was excited, this year she wanted nothing to do with them, and the giant tree was trying to take her hat-it was fun to watch this little girl trying not to care when this big tree was trying so hard to make her care.

This last week it has rained a lot, even though the days are usually very sunny the rain comes in buckets and leaves. Because of that, we have a HUGe mud puddle in the back yard that he and Hershey find a lot of fun. Stryder HATES baths and has since he was a baby, so why a mud puddle is so much fun, I don't know. Hershey is a Chocolate Lab, so that's a given, but those two can get into a lot of trouble when left together. They decided today would be a great day to play in the water :( which also means that Stryder will come running in because he has realized that mud puddles have mud in them and it's on him. He really does not like to have ANYTHING on him. We call them little panic attacks, but he will be back out there to see if he can jump in again later, I'm sure.

Stryder is starting to get a cold which can cause seizures, coma or even death-but you just look at him and think that is the farthest thing from this little boy. I just hope we get the test results back so we can make our plan on which direction to go. We are starting to make plans to move back to Oregon, even though we never wanted to do that-with Stryder's new development, we need to. We are tentatively planning for the fall, or at least after we get all the assessments done and our goals outlined. I have checked with the speech programs they have there and they are just as good as here. Unfortunately, the hospital isn't equipped to deal with Maple Syrup Urine Disorder, but most aren't. We will have to do some research to see what our options are, but for now I remain positive and hopeful because Stryder's happiness is the main goal and always will be. It will be good to be around family again, but we really do love this area and there are a lot of fun things we have got to do.
Friday, May 21, 2010

Stryder loves his big sissy. The other day we went to Frankie's Fun Center and they had so much fun. This was taken in a photo booth.
Yesterday's therapy with Jayme was fun. Stryder was very different and was jumping around and playing quite a bit. This is a far cry from when he first started out. Jayme mentioned how the during the first month, Stryder was almost robotic. Very eager to do what was asked but didn't really show any emotion. He was, and is, very compliant, but never smiled and seemed to do anything only because he was asked, not because he wanted. Yesterday, he was different-finally telling Jayme when he was all done with an activity, standing up and kicking around, being his normal, fun self and laughing the entire time. Jayme was laughing along side too.

After explaining to Jayme what the genetics DR had said, she was relieved to know that she was not alone in saying that she had never witnessed the speech patterns that Stryder had. I told her how the DR was intrigued with his case. It was as if he had his own language, that no one else understood. We also talked about the prognosis of having Maple Syrup Urine Disease and she was concerned for me, telling me not to go on the internet and reading about it until we know for sure. It is a very dangerous disorder and the only "cure" is a liver transplant, but it can be somewhat managed through his diet, but if he gets even a small cold it can cause brain damage, seizures, coma or even death. We are still in the beginning stages of finding out about this disease, but as I have said before I feel like we are on the right track and can start protecting him from further damage.

After therapy, we went to the pool and Stryder had a blast. He was talking with a lot of the parents and even found a little girl to play with that was exactly the same age as Stryder. They ran and played and even talked with each other. It was so fun to watch, expecially because this was the very first time he has ever played with another child and didn't ignore or turn away. He has definitely come around 180 degrees from where he was just 6 months ago and I am so grateful that he is learning to be more social even with his disability!
Wednesday, May 19, 2010
Today, we took Stryder to get a genetic test. He did so good and surprised us on how well he did. He did get upset a couple of times but he loved the nurse- she played with him and he knew she understood his needs. The DR said that he had never seen a case like his. Stryder is so very bright, shows some social concerns but his speech patterns are very different than any he had ever seen before. He is very interested in studying his chromosomes.

One other test he is doing is for Maple syrup urine disease. I had concerns for this only because his urine is very syruppy but also thought that without treatment it can kill and Stryder is still alive, so it can't be that. I have never looked into it, except the other day it was so strong that I looked again, only to see the not so good news on it and decided to just wait.

When the DR told us the signs of it, he was concerned because Stryder does fall into the condition very well and it makes perfect sense. The disease can be treated, which is good, so I am excited for this news. It will mean a big change with his diet, but we can deal with that, it's the other things we don't want to have to deal with.

We will get the results for the amino acid tests in two weeks and the gene tests in about a month. But in the mean time, we have one more appointment at the Childrens hospital, but today I am very hopeful.

MSUD is a potentially deadly disorder that affects the way the body breaks down three amino acids, leucine, isoleucine, and valine. When they're not being used to build a protein, these three amino acids can be either be recycled or broken down and used for energy. They are normally broken down by six proteins that act as a team and form a complex called BCKD (branched-chain alpha-ketoacid dehydrogenase).

People with MSUD have a mutation that results in a deficiency for one of the 6 proteins that make up this complex. Therefore, they can't break down leucine, isoleucine, and valine. They end up with dangerously high levels of these amino acids in their blood, causing the rapid degeneration of brain cells and death if left untreated.

Tuesday, May 18, 2010

The EI came to play with Stryder today. He loves his time with Mandy and plays a lot of fun games. The visit with the EI is to introduce him to the social aspects of life. Mandy is not a DR, but she knows how to play with Stryder very well and he likes her. It took him about a month to get used to her, but he looks forward to his play time now.

We talked about the genetic testing that he will have tomorrow and also the one coming up at the Children's hospital. She said that we should be aware they may bring up autism because he does not have social skills that other kids have, but he does love adults-once he gets to know them. I also told her that the DR there said that she was going to refer him to an Occupational Therapist. Mandy was asked by the SLP if we could get one, but she said that she didn't think it was needed. Jayme, the SLP said that we would see, he did-so I am glad that someone else is going above and doing what is needed for him.

The program that Stryder is involved in is available through the government nationally free of charge -it's part of the leave no child behind program. The only obligation is that he has to qualify, which he obviously did. When he was initially evaluated, his speech was only in the 3% and that was only because he is able to make the sounds when they are isolated. He also has echolalia, meaning he can repeat what someone says exactly tone for tone and syllable for syllable (although the consonants and vowels are not the same) right after you were to say it. He can mimic any song he hears or any commercial.

Because this program is through the government, any additional resources have to go through a lot of hoops to get covered. Insurance does not cover speech therapy unless it was due to a stroke, so we have to play by their game. Mandy was very surprised that someone in genetics is doing a recommendation, but I'm very glad someone stood up for Stryder.

Mandy read some books to him and pointed to pictures, trying to get him to say the words. He is so much fun to watch. She is also using signs with him since this seems to come very easily for him.

Now that there are other concerns, there are other DR bills that are going to be coming. Insurance will obviously cover for things that are life threatening, but only up to 80% which means that we have to pay the rest. It didn't hit me until the DR at the Children's Hospital called the other day and said that we had to come up with $1000 by the appointment, and that was only for the evaluation. I'm not sure what we will do to get the funds in the future, I only hope that the signs and symptoms he has had so far go away or are just the way he is. But in my heart, I know the worst is yet to come. I just want him to keep his happiness that he has now and only wish him no pain.
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
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.

Stryder has started to show signs of clubbing of the fingers, which is a side-effect to some other diseases, one of which is Cystic Fibrosis, which we already already knew he didn't have. Some of the other side-effects he has are turning blue in the mouth and lips and shaking of the hands. There are 88 possible things it can be, but none of them are good and range from the best being an organ transplant to the worst being early death. I started looking at the list of possibilities but gave up after finding that some are horrible. I will await the test results.

Stryder also has loose stools, showing that at the very least is mal-absorption issues. He runs and plays just like every other child and even has better coordination. He started walking at 8 months old and hasn't stopped. He is very happy and that is the ultimate goal, no matter the outcome.

After today's call with the genetic counselor, there are other things that I should "not" be worried about: discolored brown/grey almost birth-mark like spots on his body, sweet syrup smelling urine, and other misc things that I never gave thought to. They said they will be testing for those too.

Speech delays are the most obvious sign, although the clubbing of the fingers is not something that can be seen too. He gets frustrated when we don't know what he is saying, but he is the most compliant little boy. He is not affectionate at all, but he does not throw fits and when you tell him not to do something or to do something , he will. When the EI gets books or games out and makes him choose, he will choose both, showing that he doesn't want to do the wrong thing, He is so eager to please.

Tomorrow Stryder goes in for a genetic test. Today they called to ask questions about his history and the family history. The call was 52 minutes asking about every detail including birth marks and sleeping habits, all of it. The DR asked why he doesn't have an OT (Occupational Therapist) yet, and I mentioned that the EI didn't think it was necessary. Take into consideration, the EI is NOT a DR and has not even graduated college and yet she has the authority to make decisions on what is best for my child. Our SLP said that the Childrens Hospital will most likely recommend one, just wait and see. She knew all along. THe DR said that because of some of the signs I mentioned, he would definitely benefit from one, so she was ordering one for him. Even more therapy for my baby, but I am grateful for the help.

The DR also recommended MUSC (Childrens Hospital) based on the signs Stryder has. I told her that we were just accepted and he has his evaluation on June 9th. She was very happy to hear he was accepted since there are a lot of families trying to get into their program and still have not after 6 months or more. We applied April 26 and were pleasantly surprised to get the appointment so soon- but that also means that they have concerns too.

I am afraid what this will bring to us, but also confident to hopefully find an answer. They will be doing a screening, some tests for Maple Syrup urine, and other blood work tomorrow. Stryder goes through panic attacks when he goes to DR's so I am very nervous. The EI even said that we should expect them to bring up autism again because of his reactions on the initial visits and how he reacts to new situations. Of course, we don't want to go backwards, so I did mention this on the call today.

I am looking for an easy answer, although I know there is not one. I just hope that the testing will say "he has this..." but in my heart, I understand chances are that is not going to be the case. Everyone wants the best for their child, me included, and when things are not what you hope for, it can turn your world upside down. I often find myself trying to fight the worry, jsut wait until the results come in-but at the same time, I don't want to be blindsided. I know there are a lot of red flags, but I also know there are a lot of great things about Stryder which make me believe he will overcome these obstacles.
Our therapy started in January with two therapists. One came to play with Stryder and help him adjust to others while the other was a DR who specializes in speech therapy. That's when the word APRAXIA was first thrown at us.

Again, I had never heard of Apraxia, so I looked it up. The news was not good, but often children would learn to talk eventually, usually taking many, many years of therapy. I was re-leaved but hurt at the same time because I knew he would have a long road ahead of him, and us. I was afraid he would be labeled as mentally slow, although he was so bright. I also was hurt because I wouldn't get to hear those cute little things children say. Why my son? What did I do to hurt him?

The Speech Therapist (SLP) came once a week at first and then more. She had other concerns for him, although he was doing much better socially, she saw other things that worried her, but she didn't want to speculate. She told us that we should get a genetic test and also get him evaluated at MUSC, which is a Children's Hospital. She also warned us that there are children waiting to get in and have been waiting since November, so expect a long wait.

Now therapy is almost every day and the SLP has mentioned a few times that he should also be seeing an occupational therapist, but unfortunately with the budget cuts the original EI said she did not see the need.
Stryder is only two, and already has had a few bumps in his road. When he was 18 months ole, the Doctor was concerned that he was not gaining weight and his diapers were far too many, coming after every meal. Stryder would eat and eat and eat, and he was still very skinny. He also sweated a lot and had some other minor symptoms, so we got him tested for Cystic Fibrosis. I, like most, have heard of the disease, but never really knew what it was. I went online to see what it was and the outlook was not good: most children did not have long lives. I tried not to worry, but of course that's my job as a mom. I have always thought something was wrong, but could never tell what it was. Stryder also has a sister who will be ten next month, so the worrying was not something I was used, but I just knew something was not right. We got the test results back and they were negative for CF. We were so relieved.

During that next summer, we went for our annual visit to Oregon where my husband's and my family still lives. While there, Stryder's great grandma, she is 96, came to me and said that she had concerns. Mind you, she was never told about any of our concerns or thoughts, she just knew. She said that her son almost died from a milk allergy and she really thought Stryder had this allergy. She watched him that afternoon eat three ears of corn along with hot dogs, hamburgers, fries and much more and still had a very loose stool. (Stryder's diapers have always been loose, he has only had about 10 normal diapers his entire life.)

After the visit there, we went to see another family member and she too mentioned a milk allergy. It turned out that her son also had an allergy and some of the same symptoms. It was at that time, we decided to take him off milk.

We went to Stryder's 2-year appointment and he had gained weight. The DR. said that whatever we were doing, we needed to keep doing. I was so releived that he was finally gaining weight and thought we found the answer. It was a short-lived victory.

The next question the DR asked was "How many words can Stryder say?" My answer, three, maybe. Stryders DR told us that there is a program that can evaluate him and see if there are concerns and if he qualifies, it won't cost us anything because most insurances will not cover speech therapy for children. We went to the evaluation and he qualified for the speech therapy and the Early intervention because he does not have a lot of social skills. We were also told he may be autistic, but have since ruled that out.

We started this journey thinking that he only had a speech disorder and now have learned that there is MUCH more to the story.

Up for a Link Exchange? Would love to exchange links and/or badges with you! Let me know so I can link you up too!

About Me

My Photo
Angela Rozewski
View my complete profile