Baptism Photoshoot April 7th at Temple Square

Chemo...DONE!

It's been 6 months and 12 treatments but on April 9th I finally had my last chemotherapy treatment.  Now I'm supposed to rest and recouparate for a month before getting my next scan which will tell us if/how much radiation I will need.  Here's hoping its none!
I can't begin to express the gratitude I have for all the people in my life for their support, loves, prayers, kindness and acts of service.  If I started a list it would never end.  We have been so blessed it is truly humbling!  And while my battle with NSHL may not be over, this huge hurdle is and I am happy if not eager to move on.  I have learned so many things and maybe one day I will write them all here for you to read.  For now, I keep them in my heart to reflect and grow and hopefully make me a better person.  I hope I have let this experience make me better not bitter.  Thank you for your thoughts and prayers.

Sewing Alyssa's baptism dresses while getting chemo- making lemonade I suppose.

Words of Love

I wanted to emphasize loving the people in our families this year for Valentine's day so we spent some time brainstorming words that describe why we love our family members and then wrote them on hearts on their doors.  And then we sent some "heart attacks" to some of their relatives they wanted to send extra love to this year.  In that same vein, I decided to wrap the kids' valentines presents in words of love.  This is how they turned out:

I just hope the kids take the time to read what I wrote rather than just tear into the gifts.  Especially since the gifts are just simple things I got on clearance and the words are from my heart.  

Valentine's day

I'm working on getting all my kids Valentine's done early this year since I won't be feeling great after my chemo on Wednesday.  Here's what I came up with so far:

 

I  printed them and sent them to some family out of town and then I printed them 9 to a page and we stapled them to candy for their classmates.  Done!

And life keeps rolling along...

 2013 was a busy year for our family.  Let me give you some updates.

Carter: After we started that Onfi in May he stopped having drop attacks all together!  So while he still has seizures, a couple each month, they are almost always in his sleep and not affecting his every-day life.  Unfortunately the seizures have caused some developmental delays (pretty common in seizure kids) and the hope is that as they are controlled and (hopefully) outgrown he will catch right up to where he should be.  So, this last fall he enrolled in the same Special Ed preschool Mikayla went to and we are happy to know the system and the teachers already.  He gets overwhelmed sometimes and wishes he could stay home with mommy more but for the most part he loves school.  In other news, he loves trains, dinosaurs and robots.  And he loves to play ball, doesn't matter the sport, anything with a ball will do.

  

Alyssa is in 2nd grade and smart as a whip.  Raising a child that is gifted can be exhausting so thank heavens I have a really smart husband!  Alyssa reads independently but mostly enjoys writing and illustrating her own stories now.  She has an imagination that would put nearly anyone to shame!  She still loves all things to do with space and plans to be an astrophysicist when she grows up. She is currently practicing for the school play, A Hysterical History of the Trojan War.  She also is excited about turning 8 and being baptized!

 Mikayla is in a small-group kindergarten so that she can get the personal attention she needs with occupational and physical therapy.  She is very good with computers and can lock me out of my phone!  Its crazy to me how tech-savvy these kids can be!  Mikayla is loving and kind and quite the chatterbox, always talking about the people in her life.  People are very important to Mikayla.
The biggest adjustment our family has been undergoing treatment for Rebecca's diagnosis of Hodgkin's Lymphoma.  We've had 7 successful treatments of chemotherapy and we are hopeful that after 5 more we will be able to put this whole thing behind us.  We have the most amazing family and friends who have been there through every step of this battle and we are both humbled and grateful for every blessing we have enjoyed.
Here's to a new year, (hopefully) good health, and much love!

Memorial Day

With Aunt Jenny and Uncles Jon and Paul visiting we had a really fun Memorial Day.  We did go on our yearly pilgrimmage to visit Aunt Katy's grave where the girls got to hear some of Aunt Jenny's memories of Aunt Katy (mom was too little to have any memories to share) and I think they really enjoyed learning more about their departed aunt.

My sweet, sensitive Mikayla also wanted to visit her friend Lucy's grave.  Lucy drowned a year ago and ever since Mikayla has said she is one of her angels, always nearby and making Mikayla feel less lonely.  I got directions to the cemetery from Lucy's mom, but it wasn't until I got there that I realized finding Lucy's grave was going to be like finding a needle in a haystack!  Luckily the Spirit was with us, because once I finally parked and decided to look around Mikayla pointed me in the right direction and we couldn't have been more than 50 feet from Lucy's grave site.  That little girl is so inspired!  

School's Out and Summer's On

I've been really busy with the end of school, Aunt Jenny and Uncle Jon and Uncle Paul's visits, and playing cruise director now that school is out.  But I have a few minutes tonight so lets get updated.
First, and update on Carter:
The new medication, Onfi, that is supposed to work on drop attacks is still working!  He hasn't had a drop attack since he started taking the medication at the beginning of May!!!!!  Unfortunately he's going through a stage right now where he likes to spit up his medication so we've had a few myoclonic and grand mal seizures but as long as we can get the meds down and keep them down we seem to have the seizures under control!  Which means for now we have put the dreaded ketogenic diet on the back burner and are LOVING the new freedom that comes with being able to leave our man from time to time for silly things like a DATE (something we hadn't done for, literally, 6 months) which we got to enjoy just in time for our anniversary (happy 11 years, babe!) We also have been able to take his helmet off (again provided he doesn't spit up his medication) and he's happy to run and climb and play with his  sisters.  He gets worn out easily on this medication, which isn't always a bad thing as it allows mom to get a break once in a while.  Fingers crossed and prayers said that we have finally gained sustainable stability...

Secondly, Mikayla:  The results of her muscle biopsy show that there is no disease in her muscle tissue. So now we can mostly rule out anything that would cause her heart muscle to degenerate, something that is very encouraging. Unfortunately it means we are no closer to finding a diagnosis about this girl and now we just get to watch and see how she continues to develop. Carter has now surpassed her in size, although he is a big boy, but Mikayla doesn't seem to mind.  She's really excited to start kindergarten, and just like her big sister before her, asks almost every day if today is the day that school will start.  We are so grateful for the wonderful special ed preschool she attended for the last two years and we are sad to have graduated.  Mikayla had almost her entire primary class in that preschool for one reason or another, and they had a great time together, eventhough quite the love triangle developed (or maybe quadrangle?).  Here she is at graduation with her admireres, 2 of which have already proposed:

Third, Alyssa:
finished 1st grade just as strongly as she started it.  A couple of tears were shed on the last day. This is one Momma who is proud to be wrong and so grateful I didn't change Alyssa's teacher.  Ms. East was amazing and really grew to love the kids in the class.  After kindergarten Aly wanted to grow up to be a veterinarian, after 1st she has decided to be an astrophysicist in order to prove the exhistance of life on Europa--I'm not sure what we're going to do with her after 2nd grade!