beyond 31

Tomorrow Caleb and I go down to Children's to get his visual field mapping done. He is incredibly excited about getting glasses! I just hope that excitement lasts and he will wear them everyday. I remember when he was born even before he has full control over his head, he would push when you supported it. He was always looking up. My great aunt even remarked, "he is going to be an astronaut, he's always always looking at the stars!"

After we have his eye appointment, he has an occupational therapy evaluation. He used to attend therapy weekly with a therapist we will call M. M saw Caleb from the time he was 13 months old until he was 4-5. M got transferred to a different branch and for the next year or so he had K as his therapist. K didn't even know how to use the e-stim and she never motivated Caleb. One day out of the blue she announced that Caleb had "plateaued" and he needed to take atleast a year off. That was 2 years ago. I was so mad at her I didn't want to take him back to childrens at all. Then with Chris working calebs school and my school we ended up running around like chickens with our heads cut off and before you know it, its been 2 years.

Caleb wasn't therapy less though. He does see an OT PT and speech through the school, plus what we do at home, but he needs a new splint and, I don't want him to fall behind. So tomorrow we will be @ Children's all day or at least from 10-4. Afterwards he will be back in the right path.

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beyond 31

Tomorrow Caleb and I go down to Children's to get his visual field mapping done. He is incredibly excited about getting glasses! I just hope that excitement lasts and he will wear them everyday. I remember when he was born even before he has full control over his head, he would push when you supported it. He was always looking up. My great aunt even remarked, "he is going to be an astronaut, he's always always looking at the stars!"

After we have his eye appointment, he has an occupational therapy evaluation. He used to attend therapy weekly with a therapist we will call M. M saw Caleb from the time he was 13 months old until he was 4-5. M got transferred to a different branch and for the next year or so he had K as his therapist. K didn't even know how to use the e-stim and she never motivated Caleb. One day out of the blue she announced that Caleb had "plateaued" and he needed to take atleast a year off. That was 2 years ago. I was so mad at her I didn't want to take him back to childrens at all. Then with Chris working calebs school and my school we ended up running around like chickens with our heads cut off and before you know it, its been 2 years.

Caleb wasn't therapy less though. He does see an OT PT and speech through the school, plus what we do at home, but he needs a new splint and, I don't want him to fall behind. So tomorrow we will be @ Children's all day or at least from 10-4. Afterwards he will be back in the right path.

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day 31!

Tomorrow Caleb goes to the ophthalmologist. I am hoping this will settle the 8 year debate on whether he has visual field impairments or not. He has had it tested numerous times and up until the last time I had always been told he has no left sided visual field on the left side of both eyes. Last year we were told that his vision was fine?!

Myself and many others seem to believe that he does have a visual impairment, so it will be interesting to see what they say tomorrow. I hope that is vision is fine, don't get me wrong, but it will be nice to get an actual for sure answer.

So.... wish him luck tomorrow. He hates having water in his face, and the threat of drops being put in his eyes is almost enough to give the kid an anxiety attack, so I pray this goes smoothly.

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Catching up

Wow busy busy busy this month! but I have managed to squeeze in my challenges. I even wrote a paper in one of my Psychology classes about pediatric stroke. I also created a huge sidewalk chalk mural in the main entrance of my school with the help of a couple of my friends and their lil kiddos.The lady with me is my best friend Christina, who has been there with me and Caleb since day 1 (she was in the operating room when i had my c-section with Caleb). Not pictured is my friend Andrea and all the
helper kiddos.

Also yesterday was Field Day Calebs class did fantastic. It made my heart huge to hear the kids tell him what an exceptional job he did. They were unsure how Caleb would do with the human tunnel relay considering you have to crawl on all 4;s through the kids legs while carrying a ball, and as you can see he mastered it! I am glad I made the decision to keep him in this school district even though we no longer live in it. He has made some great friends, friends who have stuck up for him when he has been bullied, and who have cheered him on when he needed encouragement. I hope by knowing him we are raising a genartion that is aware that kids like them can have strokes.

day 19

Well today Caleb got to say the pledge at school! I had to talk him down because he gets so nervous. He didn't want to do it because he gets scared, but he stuck it out and did it perfectly!

But also I noticed his left leg is swollen at the ankle, so I iced it on the way to school. He says it hurts and so I am going to take him to the ER after school just to be sure I hope its OK because I don't think he could use crutches. So please keep your thoughts with us its on his weak side too.

Tomorrow my friend Andréa and I are going to do a chalk awareness mural outside my college so stay tuned!

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day 18

Wow I am feeling overwhelmed. After falling in February, I have been going to school, and therapy on top of all the stuff I do as a mother. I had to take the last half of the Quarter off last Quarter because of my fall, and now I am struggling to make up the work. Soo by the first week of June I need to have 3 papers researched and written, on top of taking 8 tests, and my standard reading and homework. Needless to say this is why I have been falling behind on my blog.

May has been a very challenging month all on its own. My car and Chris' car broke down on the same day. Well mine isn't broken down, but the clutch will go any minute now. Due to lack of finances and Chris' car proving to be just as unreliable, I need to try and make the clutch last till payday. Good Luck lol.


So I know all about challenges this month. I have been playing catch up in school enduring therapy twice a week and dealing with general life stressors. Talk about walking a mile in Calebs shoes. This is his life. The 2 months I spent unable to use my right arm/hand was a real eye opener to the struggles my son faces on a daily basis. But the physical is only half of the battle. It seems every year we find something new the stroke has caused. No one ever wants to believe it when I reveal the results of an IQ tests showing cognitive impairments, or a visual tests showing he has no left sided visual field. I understand why family and friends would want to feel that way. I didn't want to believe he had a stroke in the first place. But the fact of the matter is it is true, and the only thing we can do is accept it and try and adjust so that the quality of life stays high for Caleb and other Hemi Kids like him.

If you want to know what type of cognitive impairments are caused by stroke, here is a helpful link Information about Cognitive Impairment due to Stroke

My fellow streakers have been doing an exceptional job raising awareness. This is a video about a fellow streaker named Julie and her beautiful son Evan. I have been following their blog, and I must say they are an inspiration to pediatric stroke advocates. Julie and Evan on Pediatric Stroke.

I am hoping to be able to stay more on top of this blog. If the weather holds up I want to accepts CHASA's challenge this week and make a sidewalk chalk mural about PS awareness. Stay with me this month isn't over yet!