"Stryders Journey"

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.

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.