Dear Heather

Dear Ellen, Dear David, Dear Mom, Dear everyone who has been asking me so long for an update.

This is for you..... and for Mason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We have been home twice as long as we were in the hospital.

Impossible. I can't bend my mind around it.

The two months at the hospital felt like forever. Like we were trapped in a dream within a dream and lived an entire life only to wake up to realize that in reality only a short time had passed (If you haven't see Inception then this reference wont mean much to you).

These last four months have flown by. So much has happened. So much has changed and somehow our new normal has become....well normal. The Dr's appointments, the referrals letters, the care book, the constant battles, are just part of our to do in a day just like grocery shopping, or getting the mail.

Your first Easter Basket. I accidentally bought you a preemie outfit (because it coordinated with the outfit I bought for Pierce) we almost had to grease you to get you in it.

I'm sorry for the long delay in posting. It has been mostly due to time management issues....as in I can't manage to get done everything I need to do in the time I have to do it. If you could see all the started and unfinished drafts for the blog you would laugh (or is it cry) along with me.

Everyday I SWEAR that I will finish my post and update the blog. I put it on my long list of must-do-today-no-matter-what list but it always falls after.

Best Easter Bunny Ever!

After the two to three medically related phone calls I have to make (which always take forever)

After the Dr's appointments of which we have at least two or more a week.

You can tell your loving this!

After I spend time trying to take care of your medical needs, and making sure Pierce isn't feeling left out (but I struggle with this a lot).

After the laundry, the dishes, the groceries...always after

Love that Smile!

Then night comes, impossibly fast, and I have to decide. Blog or sleep.

Guess which one wins?

It took a while but your brother actually enjoys you now
and will even hold you (for a tiny bit) for pictures.

I actually am going to try and catch up the blog for the last few months in future post so for now just a quick letter.

Dear Mason,
My beautiful boy. Just a few days ago you turned six months old. Half of a year.

Just 7 months ago I cried myself to sleep most nights with only the one thought.

Live

Whatever it takes. Please just live.

and here you are. SIX months old and thriving with more personality than any one kid needs. You amaze me.

There are so many things you love. Pulling on my hair. Watching your brother jump around and spaz out. You love to watch everyone and everything around you and are always so aware of whats going on around you.

You put everything you can get your hands on in your mouth (and get quite upset when you can't get whatever you want into your mouth).

Father's day. Daddy's shirt says property of Pierce and Mason (SO TRUE)

You've been rolling for a while now and can even get onto your tummy when you want to. You haven't quite figured out how to roll back off your tummy but it's only a matter of time. You've discovered your feet and love to roll holding onto you legs till you look like a confused Sumo wrestler.

Your getting better and better at holding your head up. We work on it every day. Some with your physical therapist Marquita (who you love and you always fart on) and tons with me and Aunt JJ.

You have started to giggle. Your Aunt JJ can get you to giggle better than anyone. It's a really soft giggle almost like a whisper and if a person didn't know you well enough to hear it they would miss it but it's one of the happiest sounds I have ever heard. I treasure it every time it happens and hope to catch it on video soon.

You love to sleep being held in someones arms especially your Daddy's. You both run so hot it's like putting two heaters together and Daddy starts sweating soon after he starts holding you but he just sweats away because he doesn't want to put you down. You just tuck your face into the crook of Daddy's arms and snooze away even though your hair ends up plastered to your head with sweat. I think if you could talk you would call it your happy place.





You have the most amazing hair and it sticks out and up and around in astounding ways. No matter how hard we try and tame it.

You fall asleep around 7 pm and wake around 6 every morning. You'll play for a while and let me sleep in a bit but once you get bored you'll cough because you know I will wake up immediately to check on you (you little stinker). I will sit up and look over the side of your bassinet and you greet me with the biggest crooked smile I have ever seen and I love it every time (and it makes 6 am after only a few hours of sleep more bearable).

My Yankee Doodle Dandy boys

You look so much like your brother did at the same age (except he was off the charts large for a baby and your off the charts small for a baby) it takes my breath away sometimes. I look at the two of my beautiful boys and know I must have done something right to deserve all that I have been blessed with and I still almost can't believe that I am the mother of two boys.

I loved you from the moment I knew I was pregnant with you, the first time I saw you, the first time I held you, and all those long nights and terrifying days in the hospital my love for you grew and grew but oh Mason how I have come to love you. Not the idea of you but YOU.



I would never have wished CHARGE for you but now that your here I wouldn't wish it away because that would mean I wouldn't have YOU.

YOU my crooked smiling, whisper giggling, Sumo wrestling baby boy.

Happy six months baby. Looking forward to a lifetime more.


Love, Mommy
(ugh forgive the spacing on this post. I've been trying to fix it for an hour and I give up now)

Ronald McDonald walk for kids 2011

Dear future Ronald McDonald House family,

Today you are living your life but someday, all too soon, you will wake up and find your life has become a nightmare.

It there will be words like diagnosis, treatment, prognosis. There will be surgeries, or maybe chemotherapy, or even transplants to come.

There will be phrases thrown out there like..."we have every reason to be hopeful", or "we will just have to wait and see" or my favorite "we will do all we can".

I wont lie. It's going to be bad.

No forget that. It's going to be horrendous.

The worst part is it wont be happening to you. It will be happening to your child and that is a nightmare in a way that I simply don't have the words to express.

But there is a place that will help you. They will give you a place to do laundry, to eat, to sleep, support you, and most of all they allow you to stay close to your child. While it doesn't make things better it will be more a a gift than you can possibly understand. They allow you to care for your child by caring for you and this help will be priceless.

This last Sunday we, and people who love us and support us more than we deserve, helped in a small part to make this possible. I'm thrilled to say that team Mason raised over $1500.

More than anything I wish this place wasn't necessary. That there would be no more sick children but that is not within our powers so instead....

I hope that the pain is little.

I hope that your cure comes quick.

I hope that your stay is short and that soon you will be back with your healthy child surrounded by your own four walls.

and that you, like us, will always consider the Ronald McDonald House the home of your heart.

With love the Lozanos and the most fabulous remembers of Team Mason Los Angles Ronald McDonald house Lyman place rooms #74, # 44, #69

It's good to have friends...

There are so many things I need to post about but I just can't seem to find the time.

You've been sick. Nothing serious, just a cold, but this simple cold translates into me getting almost no sleep. Which translates into me being a slug just getting what I have to do done every day to get by. Oh that and 4 Dr's appointments and 1 dentist appointment (for Pierce) in 5 days has been keeping me beyond busy.

Happy to report your about 90% recovered and I believe will soon be 100% back to yourself (and me too!). I just have to tell you, even though you've been feeling just about miserable your always so sweet and easy. Your just about the mellowest babies I've ever known.

Well, except when you poop. Because when you do you will scream till you turn purple and you would think your head might start spinning around and fly off! But once your changed your back to being your sweet easy self.

But being this busy unfortunately also means I as behind on everything else I need to get done including the invitations to Mason's welcome home party.

I really wanted to do it as soon as possible but I thing I'm going to need to postpone it a bit. Just till May 15th. That, I hope, will give me the time I need to catch up.

So, if you can, will you please save the date for the 15th we would absolutely love for you to join us. I sure hope changing the date doesn't inconvenience anyone too much. Thanks for understanding.

There were two major highlights to our week. One was the RMH walk, which I will post about soon, and the other was when my dear friend Becki from Becki Cloud Photography came over to take "newborn" pictures of Mason.

I love them more than I can express. Thank you B for recording these images for me.

There is so much Mason missed out on being in the hospital for the first two months of his life.

Now newborn pictures will no longer be one of them.

Thank you I will treasure them always. I

It's really good to have friends. :)



Oh how I love this sweet face

and tiny toes!

Mason Samuel was named after my sister Lisa who's nickname was Sam.

My sister passed away in July of 2007 from Pancreatic cancer. She was only 47. But when I went to see her for the last time I brought her this bear as a gift from Pierce and she loved it. She held it in her arms even after she was in a coma. After she passed away the bear came back to me. I will always treasure it.

She died about 18 days before Pierce was born so she never got to meet either of my children. I will always regret that. But now at least her memory will be carried on in my Sam and as my mother always says...as long as someone is remembered they will live forever.

This one. This one is my absolute favorite. My boys.

What a lucky lucky woman I am.

No matter what

You know how you promise yourself your gonna start your diet tomorrow? NO MATTER WHAT and then tomorrow comes and you don't.

Then you say OK now tomorrow I'm gonna start..and this time I really mean it NO MATTER WHAT and then you still don't..

Yeah well, that's what it's been like trying to update the blog. Every night I say tonight NO MATTER WHAT and then I look at the clock and it's 12:30 (or later) and I know I'm gonna be exhausted the next day so I don't update but I say tomorrow NO MATTER WHAT.

So here is my NO MATTER WHAT post....

I haven't updated the blog for several reasons Not much is happening really.

We're in a lull where we are waiting for Dr appointments. We have referrals but since nothings stat we wait. But the calendar is getting full. We have 9 Dr's appointments this month and it's only the 1st of the month!

You are doing so well medically. Your tolerating your feedings, and your oxygen need are decreasing. You've even gained weight! At our last appointment you weighed 8 lbs 14 oz! A whole 13 oz in less than two weeks. Yay!

We've even gotten you down to only two meds - an iron supplement and vitamins. That's it! So healthy.

No laptop = no blogging. We still have the old laptop the one I destroyed before I destroyed the latest one (see why my husband adores me) which works but only when hooked up to the old desktop which also works but it from 2004 which makes it practically an antique. Both though are in my craft room and I have almost no access to them during the day while the boys are up and about and am too tired to go in there and blog at night. But this will soon be remedied as George got me a new netbook so I can get back to blogging more regularly. (I'm really really going to try to keep from beating up on this one)

One needy 2.7 year old and a medically needy 2.5 month old leaves very little time to get on the computer even if I had one to get on. I was about 4 hours into my first day alone with the boys before I realized I wasn't going to be able to do this alone.

Now that the nurse has started it sooooo much better and I'm so grateful the insurance is paying for one. I honestly don't know how I would survive with out home nursing.

and finally...

I've been in a really dark place for the last weeks and I've been afraid I would only be able to blog dark things so I've held back.

I'm better now though.

I've tried to write about the dark place I found myself in but just keep writing and deleting. Starting different versions of the post only to save them and not publish.

So for now I'm just going to publish this post as it is. Maybe I will publish the post about my dark place later. Maybe not.

I keep reminding myself I'm in the place I always wanted to be.

I'm living the life I dreamed of.

Married to a man I adore (though I do want to beat him somdays..)

Two beautiful, loving, healthy boys ('cause at the end of the day you are incredibly healthy for someone with CHARGE syndrome)

A home like I only wished for.

and a future filled with so much possibility

I'm living my dream. In the place I always wanted to be. I'm so lucky to be here.

It's just so different than I thought it would be like.

and I'm learning how to deal with that.

I'm trying to anyway.

Pierce absolutely loves joining you in the sink for your bath. He hardly fits but somehow manages to squeeze in with you. He even helps out by washing your feet.

Best big brother ever!

Cousin Kelly and Caitlin came down to visit you (I guess I forgot to get a pic of cousin Caitlin)

Uncle Pat got to meet you and held you for over an hour even though he had to get going. Uncle pat is actually very happy even though he looks mad in the picture.

Toto I don't think we're in Kansas anymore!! One day worth of approvals and one denial letter from insurance. Your care book is in the background. The care book is so necessary. I have a section for each of your specialist, therapies, medical equipment, insurance, bills, receipts, phone long, calendar (for our many many appointments), and medicine section. You just look so cute in your bath I had to get a shot of it. Like the carefully place soap bubbles?

We were getting your machines ready for the night and turned around to see Pierce had shared his letters with you (one of his most favorite toys). We think it stands for #1 brother. I like to call this "the unit". In the back you can see the home oxygen concentrator along with the home fill unit on top of it. In the front is your feeding machine, pulse oximeter, and nebulizer machine. You can't see the suction machine which is hiding in the playpen. Every night we have to bring everything upstairs (except the oxygen concentrator) and set up for the night shift. The great thing is you go to sleep around 8 and sleep through the night till around 7. I even turn you and change your diaper and you don't really wake up. How awesome is that?

There you are hiding amongst all the stuff!and this is what happens when I try and get on the computer...

Pierce vs. the black jelly beans. Just awesome. It's a dang good thing I love him so much. I had just given him a bath and had to give him a second one after this