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April 26, 2003
~4.26.04~
Here it is Monday morning and as I look at my calendar for the week, I am already exhausted! Tues, Wed and Thurs are Sean days. Very important Sean days!
Tuesday we FINALLY get to meet with the Cardiologist. I am so anxious to know more about this extra artery. I do know that is will only be the start of a long journey. They need to do an Angiogram of his whole body to make sure the other organs are not affected.
I learned last week, that sometimes and they are pretty sure Sean has, is that very early after a baby is born, a blood clot could form and go to the heart or any other organ and clot things up. Usually death occurs, but a rare condition can happen. The blood flow and body makes another vein to go around the clot. I didn't believe it at first, BUT I have done my research and it does actually happen. This is way they are checking for the clotting rate in Sean's blood and if he is missing or has extra proteins that would cause his blood to clot too much. SO dispite this extra artery to the heart and the problems it is causing, this extra artery has saved his life!
Wednesday is Ultrasound day of the spleen, liver and kidneys. A doppler reading will be done to make sure the flow of things is good.
I hope the Dr performing it will give us some idea about what is going. Sean's Pediatrician is out of town this week on a speaking engagement. He said he would check in every day to see if any results were in and either call or email us. If not, we won't know anything until next Monday! Did I mention I am not a very patient person?!
Thursday is probably the day I am dreading the most, yet looking forward to. We meet with Sean's IEP team to do up a new IEP. Sean doesn't have any mental disabilites, but the potential for, is causing a huge ruckus! The school district does not want to provide services or special education for him after this preschool year. HOWEVER, because of a clause in Section 504, they MUST provide services. He has the potential for some nasty issues because of his health. It is poor and we can not risk putting him at anymore risk then necessary.
What is misleading is his outward appearance. He looks normal. His very small-the age of a3yr old and skinny. He runs, sings, dances, and talks like a child his age. His doing beginning reading and needs help with his writing, but that is something else with this hands, which will be looked into again after the pressing matters are taken care of.
Sean is very out going and is never afraid to tell you what he thinks. He loves to talk to anyone who will listen.
He has gorgeous eyes and eyelashes that having people doing double takes because they are sooo long! They go beyound his eyebrow when his eyes are open! They are dark and thick! He is the envy of any female around.
So many people are shocked when they find out that he is one messed up child on the inside of his body! I know it took the preschool people a while to really get it into their minds that he is not normal. He proved this when he started to get sick and would miss days on end. He also proved he needed someone to watch him while eating food, when he choked and they almost had to call 911. His aide thought he was it doing for attention until she realized he wasn't getting better! (Sean craves attention!)
So Ken and I are drawing up what we want for Sean and hope we can get some sort of letter from the Cardiologist about the issue at hand.
What makes this IEP different than normal, is it is a Transition IEP. Since he will be going to kindergarten in the fall, we get to do this. He was observed by the Elementary crew and they kept telling me how normal he is. I tried to keep my anger under control as I explained not to judge a book by its cover. They didn't seem convinced.
We are fighting for Sean to be transfered to another elementary where the Kindergarten room is closer to the office than the one he is to attend. The one he is enrolled at, the kindergarten is across campus! We have timed it to be about a 5min walk. too far in case he chokes or has any other problem-asthma attack or just anything. He would have to walk there for his morning
daily breathing treatment and dose of medications he needs before lunch.
Also limiting his week of school to only 3 since he tires so easily. His health has been better since we have limited his days of preschool to 3. The other two days, a tutor would come to our home and work with him for an hour each day.
Now, if they won't honor the above school day week and say he can attend all week, we will fight. Now if they say he needs to home school all week long, we will fight it. Home school is only an hour each day and he needs more than an hour. Plus he needs to be with other children-not to mention, I need a break from him. We have considered doing home school through a different program if they say home school all week long. An hour isn't enough each day to be productive and learn something or anything.
It is confusing and parents of Special education students get railroaded by school districts all the time. THey get sued, but not enough since most parents have limited funds or time to go the distance. We don't have the funds, but we will fight. I will not let others, who haven't a clue about my child, tell me what is best for him! I have fought with my oldest and with Sean and I will fight harder than they ever imagined!
well, this has taken longer than I wanted, so I am off. I have tons of laundry to fold, hang and put away. It is Sean's therapy day, so my day is really cut in half by this. I hate therapy days. I know Sean needs it so I go. I look forward to the day when I can, hopefully, reclaim some of my time. Being a mom to 4 boys keeps me busy, but having Sean magnifies that by 100 fold!
I will update later this week, I hope, about how things went. However, If I can't, Amanda has said she would for me. Amanda is just a wonderful sweet person I have come to know from Teenagers Today. She has a brother a year older than my teen son, Paul. Thank you Amanda!!!!
Have a wonderful week!
Shelly
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