Transplant living and school.

Post date: Aug 22, 2012 2:21:11 PM

Natalie is a 3rd grader. Can you believe it?

But for the Grace of God...

I just look back at some of those old posts -> see Archived Journal Entries...the ones from the summer of hell. (That's 2005 if you are keeping track) I didn't know some days...typing about it is hard. Heck I don't think I have even brought myself to finish the merge of files to this site from that time...There were some days when I didn't know if all 3 of use would come home from the hospital. There I said it. There weren't many of those days, thank God. But the 2 or 3 are enough to haunt me for the rest of my life.

And yet, here we are. I am the mom of a 3rd grader.

For those wondering, Natalie does not have an IEP. Nor have we requested a 504 medical plan from the school. We haven't needed to. Her school has been fabulously accommodating!

Each year, the school nurse sends out a letter to the parents in Natalie's class. The letter was originally crafted by another "Liver Mom" that I met at Liver Families. Here is a copy:

Letter for school.doc

And then in addition to that I always begin each year with an email to her teacher.

As you already know, she had a liver transplant when she was 17 months old (getting part of my liver). She had cancer shortly after that. She lived with a tube sticking out of her tummy for over a year. And then had H1N1 in kindergarten. She has portal vein thrombosis (blockage in a major vein) and hypertension as a result.

But none of that is who she is:

· She is spunky and full of energy.

· She is a rule follower and thinks everyone else should be too.

· She is fair and thinks everyone else should be too.

· She talks. A LOT.

· We (her dad and I) refuse to let her use her prior medical stuff as an excuse for anything. She can do whatever she puts her mind to.

I promise (hand on my heart) to do my best this year to be a good parent and not give you any trouble; I promise not to be that parent. I promise to let you do your job as the teacher. But as I have worked hard just to keep Natalie here with us it is hard for me to give up control sometimes.

Issues we know of to look for:

Portal vein thrombosis.

a. Portal vein is blocked but at this time there is only the potential for varicies – i.e., bleeding. (if ever she mentions blood is her stool, she knows to find [nurse].)

b. Portal vein hypertension (her doctors have said that she may have limited attention span – but we saw no such thing last year).

c. Enlarged spleen – only activity limit, per her transplant team, is no "contact" sports. I guess football is out :)

And then, well, having sent the letters and communicating all the fear, I have nothing left to do but pray for another fabulous year!

PS - I know I owe you all (if anyone really reads this :) ) first day of school pictures and pictures from the county fair pageant. Look for those, soon.

Don't forget to sign the guestbook.