this little one

lily has started a new medication.  it is in the same family as the others and has similar side effects.  however, there have been some changes in her behavior that i am not so sure about.

she has not been sleeping well.  which really, is no change.  however, she used to just nurse and then go back to sleep.  now, she screams, cries, says owie, all while nursing.  and she will not stop nursing, i lay with her there awake for hours each night.  

she has started having bloody noses.  the first was right before we left on vacation.  i was packing the car and logan came running out to me terrified and screaming that lily was bleeding.  i ran inside to find herself full of blood as well as the floor, covered.  there was no injury and logan said she had sneezed.  it subsided quickly and i assumed it was from the dry air.  she had for the past two mornings.  i have a feeling we will be seeing more of these as a result of the therapy.

at breakfast luke asked why lily's hands were shaking while she was eating.  i walked over and it had stopped.  the medication is a toxin, obviously, we have to watch out to make sure she does not develop any neuropathy.  i am hoping she just had a little shiver. i have not seen her do it since.

her poor little tummy and bottom.  she has had diarrhea for 6 days. yes,6 days.  i have never gone through so many tubes of desitin in a week.  on the first day i spoke to the nurse about it, she had mentioned that it could last for a week or so.  the comment seemed a bit odd, i mean who has diarrhea for a week?  well, apparently individuals on chemo.  her system must be completely depleted causing her both the nose bleeds (low platelets) and diarrhea (strips the lining of her digestive tract of all the normal flora).  we are on probiotics, but geez. 

our next visit will be in two weeks.  the new medication is only given every other week.  i am hoping in the meantime, that means that these restless nights, diarrhea,  and bloody noses will lessen.  

yet through it all she still remains my smiling happy little girl.  keeping up with her brothers at every turn. calling out their names and looking for them when she hears their voices.  i on the other hand am not quite as chipper.  sleepless nights amount to migraines for this mama.  we were up for two middle of the night baths last night.  it seems like she knows the drill. poop. bath. back to bed. poop. bath. back to bed. amazingly all with a smile on her face, making my little migraine seem not all that bad in light of what she has going on.  

beach

a special treat...

USS Midway

i have been reading the bronze horseman series and it has really opened my eyes to all our soldiers go through to keep us safe.

stepping upon the USS midway i felt many feelings come to the surface.  the ship itself is incredible, i am glad to have experienced it and to share it with my children.  i know they do not have the capacity to understand its significance, they enjoyed pretending to fly nonetheless.

several of the visitors that day had flown the planes on board... amazing, these huge manly men fit into  tiny cockpits and flew them into the sky. utterly amazing.

lego land

legoland is not on my list of favorite places to go.  lines, keeping track of 4 little ones, some not tall enough to go on the rides.  its a day full of happiness and tears.

however, they begged and we went.  the smiles and excitement make it all worth it.

a few notes for next time...

...i have never been a fan of a child on a leash, but landon needs one.  he takes off running in every direction possible and we lost him once.  he squeezes his merry way through the crowd and i simply cannot catch him with all the others and a stroller.  he was on his way to the lost and found with a park employee when i came upon him.  i was terrified and he was happily telling stories. leash:)

... lily is the calmest baby i have ever traveled with.  she made it all day. smiling.  napping in small spurts where ever, when ever she could, even if for only 5 minutes before being awaken by someone or something.

... ice cream can cure any meltdown.

...luke is sporting a new thumbs up look and logan prefers to be serious in photos.

after a full legoland day, there is nothing like kids night at the local brewing pub.  good beer for mommy and daddy, free kids food, balloons made to order keeping them occupied.

(as a side note, these are not the best quality pictures.  most are taken from my iphone 3.  yes, its a bit old, has been dropped, made it through a few sandboxes and drinking fountains.  but the reality is that it is perfect when traveling with 4 little ones.  capturing some moments we can look back on.)

logan choose the snake becuz it can also be a water float. always thinking.

Thanks

Every few years my birthday falls on thanksgiving. I love it, it makes the day feel that much more special.

Today I am thankful for...

Laughing and singing on our one big bike as we pedaled it through town to the beach

The way Landon's lips curl when he talks out the side of his cute mouth

Brunch with old friends and their little  ones


Feeling the warmth of little bodies as they sneak into the big bed to snuggle during the wee hours of the night. I miss my sleep, but know someday they will not be there to cuddle

Luke's sincere concern for me before riding the roller coaster at sea world. He lead me by the hand to the 'sizing' guy and asked if he could make sure I was big enough to go on the ride. He is my big boy, still little at heart.

Us, precious us. Knowing how to love and break one another so well.

Logan in tears screaming at his brother to come back from the big ocean waves, in fear that he would loss him.  Love and protection in his eyes.

Lily smiling and lighting every room she walks into, reaching out and touching everyone's heart being who she is.

Living and being in the present.

I have been blessed with my family. They do not belong to me but are mine to enjoy along this journey. Loving every minute I have with them beside me.

On our merry way

It has been over a year since I have left Arizona. I am excited to say we are all packed in the car and heading to California. Lily has the week off of chemotherapy and the boys are out of school .

Sunny beaches here we come, the water will be a bit chilly, but we can't wait to build and play in the sand. We are just now venturing into no mans land, middle of nowhere and they are asking if we are there yet. Almost, just another 4 or 5 hours.

We made it.