A Tuberous Sclerosis Weekend ….

This weekend was like every other weekend in our family, BORING, except I spent a lot of time thinking about our Tuberous Sclerosis friends.  This past Saturday was the Walk for a Cure in Long Beach but we were unable to attend this year.  I was sad to miss it because one special girl, AMELIA, who has been patiently waiting to see Tiara was going to be really bummed when we didn’t show up but I knew it would be too much for Tiara.

The walk is in the morning and by the time we got there it would be time for Tiara to take her nap and since she needs oxygen to sleep I couldn’t lug around the huge tank while she slept in her wheelchair.  Plus she doesn’t do well in the heat and I am terrified she will get sick again.  She had a runny nose this weekend and asked for the doctor today, so I am praying it is just allergies. 

Of course she is still supposed to be on oxygen 24 hours a day until we meet with the doctor this morning but for the past 4 days she has refused to wear it during the day.  She has been fighting me on it and started pulling my hair and kicking me in an effort to keep the nasal cannula off, so I finally gave up.  It appears she is getting back to her “old self” as she has been throwing stuff, almost tore out Tabitha’s bar in her ear on Friday and keeps telling me to “go away, I hate you.”  Not sure if I am happy about this return to her old self or not?

Back to my TSC family, Saturday morning while everyone was walking in Long Beach, I received an email saying that Brenna was on her way to Cedars for her kidney transplant.  I have been waiting for this email for days and have been really nervous for her and her whole family.  I was so excited they finally got “the call” that a kidney was available but I was also really nervous.  All weekend I kept checking my phone to see if there were any new updates.  Saturday night I heard that the surgery was a go and was going to happen around 9 pm.  I woke up Sunday morning and the first thing I did was look for an update.  There it was.  She had the transplant, the surgery went perfect and the kidney was already making urine.  Oh, what a relief, Thank you God!  Another TS miracle!

I then read a guest post from another TSC blogger and got involved in an online discussion about a school district that failed to administer Diastat to a child after a prolonged seizure.  I get so frustrated with the whole school situation.  So many of the TSC kids have some real serious medical issues and then the kiddos are supposed to go to school and have the staff handle the issues.  I know there isn’t a perfect system but it seems like too much to ask that an aide who is getting paid a minimal amount of money and most likely doesn’t have a college degree to handle the medical, emotional and physical needs of our children.  Of course each school has a nurse but budgets are such that one nurse is usually in charge of several campus’s so she may not be on site during an emergency.  You probably wonder, why not just keep the child at home like I do with Tiara if the situation isn’t safe?

Good question.  Assuming ar family could afford to keep a parent home all day with their TSC child, the school district doesn’t usually allow it.  Yes, crazy but true.  In order for Tiara to stay home and have teachers come to our house 4 hours a week, we need a note from a doctor outlining the reasons why she can’t attend school. These aren’t BS reasons, but need to be validated with medical records to prove the issue at hand.  A few months ago I requested that we no longer have home teachers come to the house and Tiara just go without school.  Well that isn’t allowed either. 

The problem is that Tiara hardly pays attention when the teacher comes and tries to follow me every where.  The teacher gets frustrated, I get frustrated, and it seems like a waste of school district resources so I suggested we go without and they can put the money towards another child who needs more help.  Guess what?  Because of state and federal mandates she must be educated and home schooling is not an option.  How is that?  If I changed her to home schooling I would have to find a home school program to accept her and the director of special education said one does not exist for her level of functioning.  Hmmm.  So the best we can do to keep in line with the law is to have the teacher come to our house 4 times per week and we can cancel if she isn’t feeling well.  If she doesn’t pay attention, it doesn’t matter, we still have to comply with the law.  I completely understand why the law was put in place but it would be nice if exceptions could be made.

I hope everyone had a wonderful weekend and wish me luck on my new health regimen starting today.  I will talk about it tomorrow and the reasons behind my new meal plan.

 

xoxo tiffani