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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.

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Angela Rozewski
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