NF1-- What's that?

Todays post is a bit different than others.  It is about a subject very tender to the hearts of our family members.  It is about something I have not spoken of to very many people.  After debating about whether to discuss it at all I have decided to for two reasons-- education and support.
When little Trevin was born, he spent a week and a half in the hospital.  When he was one month, I noticed that he was beginning to get small marks--resembling bruises or birthmarks-- all over his body.  I felt like a vain mother for letting those marks concern me.  I mentioned them at our next doctors appointment.  From there, we began to take Trevin to see specialists.  We have seen an optomologist, neurologist, and had an MRI done for Trevin at Primarys while Sadie was in the hospital.  After waiting for months for an opening with a geneticist there, we were able to take him to an appointment this week.  The doctor confirmed that this happy, calm, book throwing little boy has a chromosome disorder called neurofibromatosis type 1, or NF1.  There is no cure.  However, there is always hope for a cure!
We've known for quite a while now that he may have NF1.  I woke up at two in the morning and began to compare and contrast the similarities and differences between  Sadie's illness and Trevin's.  Hers as sudden as a bolt of lightening striking us.  Trev's was gradual.  I have spent many hours crying for both of these children and the unknown future.
I can't help but feel Heavenly Father is watching over our family.  The geneticist we were assigned to just happens to specialize in NF1.  I had wanted to go to Primarys for medical care, hoping to see a doctor who had worked with other children who have this condition.  Zing!  He actually wrote the book on it.  Literally.  He is co-chair for the Childrens Tumor Foundation (ctf.org).  They are dedicated to research for NF1 and hope for a cure.  I do not know if it would be possible to find anyone, anywhere who knows more about it than him.  He is the genetics teacher at the University of Utah for the medical students majoring in genetics.  Very smart and very kind.  He spent at least 40 minutes talking with David and myself about NF1 and what it means for Trevin.  We are in good hands.
Another way I feel we are going to be okay is based upon a comment made by Dr. V.  (I can't pronounce his name.)  He said the best thing parents can do for children with NF1 is to get them in to early intervention programs.  Many years ago, I made the decision (after much fasting and prayers) to change my major to early childhood special education and severe special education.  Poor little Trev, he has a built in developmental therapist for a mom.  He may never get a break.  I already have his sisters starting to sing to him more to help his speech development.  Oh, and talk about a getting a double whammy, kids with NF1 are often uncoordinated.  Poor kid, with me as a mom he was already bound to be a bit clumsy.  (Don't think I'm making this up, my sister said the exact same thing when I was talking with her about what to expect for Trevin.)  Good thing his dad has some athletic skills.
So... that's been our week.  I am grateful to finally have an official diagnosis.  I can stop fretting about the unknown and do something about it.  The doctor calmed many of my fears.  Let me add my own two bits for anyone thinking of doing a random web search for any type of medical condition: don't do it!!!  The information that is easy to find is usually not accurate and worst case scenarios   Get a doctor to give you a website with accurate, reliable information.  You'll save yourself a lot of grief.
... and now for the Sadie update.  She doesn't have to go back to Primarys for three months-- hooray!!!  This is a new record for us.  We are excited.  She has had a lot of stomach pain this past month but seems to be doing much better.  Her doctors have been great at giving us ideas to help her.  She is very hip and stylish.  Most kids can't pull off the Snow Suit to School look, but she graces those outdoor bibs each and every day, all day.  Apparently, it's a pain to have to take her boots off to put the suit on at recess.  Plus, then you miss valuable play time.  She wears it all day.  Whatever.
Natalie, Rachel and Alyssa are all alive.  They just don't have mysterious illnesses to write about.  Let's see, nope, they are healthy and normal as can be.  (Yea!)  Natalie is turning into a teenager.  Rachel asks lots of questions and may be a scientist in the making.  Alyssa makes us laugh.
And one last thing.  I finally did something that has been hard for me.  I finally sent a letter to Sadie's liver donor's family.  I have written that letter over and over this past year.  I couldn't mail it.  How do you thank someone for saving your child's life when you know that it came as another person lost theirs?  I have had an internal battle brewing for months now.  I feel relieved to have it sent.  Thanks to my Aunt Karen for making beautiful crocheted angels for their family.
We have been given an overwhelming amount of support from countless people this year.  I still meet people who tell me they know about our family from the fundraising auction last year.  Thank you to everyone who has helped us and prayed for us.  We are deeply grateful.
Now, if any of you good readers have actually made it to the end of this long post, congratulations!  If any of you have questions for us about NF1, please don't ask.  We don't know!  We are still learning ourselves.  The website ctf.org is an excellent source for information.  In twenty years, I will happily answer questions.  As for now, I am in research mode.  We are in good hands medically, and I know where to go for help.  We would be interested in connecting with other families who have a member with this disorder, but other than that, I am hoping to not be bombarded with suggestions.  (Not that anyone would, because, who has even heard of neurofibromatosis?  Not me before this all began.)
And hey, watch for us to be on the news as future lotto winners.  Although we haven't played before, the odds are definitely in our favor.  The odds of having a healthy child need a liver transplant?  One in millions.  The odds of having a child born with NF1?  One in three thousand.  We have a much better chance of winning the lottery than most people.  Future millionaires for sure.