Welcome to Holland

For as long as I can remember I had an idea of what life was going to be like when I grew up.  In my mind I was going to marry a specific kind of man who had a fabulous job and we were going to live by my family and have so many children by a certain age...  I had it all planned out and it was going to be perfect.

Not one of those unimportant things came true.  But all of the fine print, the stuff that really makes life sweet, the stuff that matters... I have that.

No I didn't get the, quote, perfect {by the worlds standards} child.  What I have is better.  Wyatt doesn't just bless my life every day, he enriches it.  I believe that just by having him I am a better person.  Because I have him I have an amazing opportunity in front of me.  I get to meet people that I never would have otherwise met.  I get to learn and help inform others of a skin condition that is practically unheard of.  But I digress.

I'll admit that as the mother of a child with a disability, life hasn't turned out as I expected it to.  And I wouldn't trade it for the world.

A friend of mine shared the following essay with me and I was so touched by it that I feel the need to pass it on.  I can relate perfectly to it and don't think there is a more beautiful way this could have been said.

WELCOME TO HOLLAND

by: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I wouldn't trade this trip to Holland for all the Paris' in the world.

Happy thanksgiving!

Happy thanksgiving from the cutest boy ever :)

Eucerin calming cream

One week in and almost an entire tube later I'm comparing how Wyatt looks pre and post eucerin.

For the past 2 months he's been using Vanicream during the day. I haven't really loved it, but it was working good enough that I didn't feel the need to actively pursue a different product. However with the drier weather I decided it was time for something new, so one week ago I started using Eucerin Calming Cream on Wyatt.

One of the positives is, it is only $10 a tube compared to the $14 I pay for Vanicream AND I can use coupons so I only spent $8 for the 14 oz tube. I would say I'm using more of it though because it seems to absorb into his skin much better so the price probably ends up evening out. I think most deep moisturizing products are really greasy and end up sitting on top of the skin, which I don't like. But his skin seems to be drinking this stuff up! It is a little greasy, but not as much as I thought it was going to be. I would be comfortable using it on him if he were a crawler. Anyway, here are some pictures to compare how his skin has improved in the last week.

No more white around his mouth and on his chin and less breakdown on his chest where his fatty chin rubs :)

Less buildup on his knees which has always been a huge trouble area for him

Less breakdown on his arms

His feet are looking SO much better

Not too much difference in his hands, but you can still see some improvement there too.

So much better right?! I'm hoping this isn't short lived and that he continues to look and feel great. :)

He did get a few blisters over the last week but I don't know whether to attribute that to dry weather, or the new lotion doing a good job. Only time will tell!

A first, of many firsts

Here it is, a little after 3 am and I've been up for over an hour with a very unhappy little boy. He's been sleeping through the night for about a month now, which has been wonderful. So when he woke up crying at 2 am I was like, what the heck?! Go back to sleep! But it wasn't happening, so I decided to feed him. I changed his diaper while his food was warming up and as I was aquaphoring his legs I felt bumps. Crap. I turned the lights on to confirm what I already knew... Blisters :(

I fed and rocked him for awhile to see if the warm food in his belly would help him go back to sleep. For a minute there I thought it was working, but as soon as I laid him in his crib he started crying again. So... I broke out the Tylenol {It's been over 2 months since I've administered any meds for pain, but this is one of those times I think he needs it} and I rocked him for another 20-30 minutes so he would stay calm while the Tylenol took effect. I think he's finally feeling better and will sleep now. Poor baby. I know this is the only the first of many nights that will be like this for him. Hopefully they will always be far and few between.

Dads are lucky

I love being a mom and all... but sometimes I think the dads have got it pretty good.  They get to leave.  I live at my job and do a little extra work on the side.  I feel like I never get to leave the house, and when I do it's like I'm going on vacation with all the stuff I have to pack.

Okay really I'm just feeling complainy because Jared is off playing at Glamis while I got left behind to take care of Wyatt.  Jared really wanted me to go, but camping in a tent with a 7 month old baby that has a skin condition is not my idea of fun... and isn't really practical.  Especially since I would pretty much be taking care of him 100% of the time out there without all of the amenities of being in a house.  NO thank you.  He wouldn't have a bath to soak in every night, he wouldn't have a climate controlled room to sleep in with a humidifier to make sure it didn't get too dry.  He wouldn't have his sound machine or his nice bed.  I'm sure we'll take him camping one day, but right now he's still too much of a baby.

It didn't really help that while I was talking to Jared tonight and he was telling me about how much fun he was having, there was a baby SCREAMING 10 feet away from me.  I don't know what Wyatts deal is but he is just not having a good night.  He cried through his whole bath.  No.  He screamed through his whole bath.  And the whole time I aquaphor'd him.  And then I picked him up to try and soothe him and he puked all over his self, me, the rocking chair, and the carpet.

So now I'm doing a load of laundry that I wasn't planning on and praying that he doesn't wake up again.  

Please sleep baby, mommy needs a break!

Family pictures

We got a sneak peek from our photo shoot last weekend. So far I love what I see!!! I can't wait to see the other shots that Amber got. Go check her out at www.amberkatrina.com

7 months old!

It was Wyatts 7 month birthday yesterday and this little chunk weighed in at 10 lbs 11.5 oz and is 22 inches long! I can't believe how big my guy is getting. :)

Squeeze a little tighter

While rocking Wyatt to sleep tonight, I held him extra tight as I allowed my mind to drift back to that day in February when Jared and I were told that we were going to lose both of our boys.  It's been awhile since I let myself really think about that day.  I have never felt more helpless than I did then.  But I have also never felt stronger.  It was interesting feeling two polar opposite emotions at the same time.  Today marks 9 months since we lost our Michael... I miss that little guy so much.  I wonder what he's up to right now.  I wonder... when a baby dies does their spirit look like a baby and get to grow up in Heaven, or do they look like an adult?  I kind of think that their spirit is viewed how you need to see them.  Michael has visited me twice since he left.  The first time he was an adult comforting me and the second as a child.  I so wish I could have saved him, but I'm grateful that I was at least able to keep Wyatt.  I'm glad I listened to my heart and did what I knew needed to be done for him.  I feel so blessed to have him in my life, he really is the sweetest little boy ever.  And I can't believe he's already going to be 7 months old tomorrow.

Winter air

It's started cooling off here in Southern California.  The air is drying out and it has totally affected Wyatts skin.  So far our routine has been that I lotion him every time I change his diaper {every 2-3 hours} and that has worked great.  But with this dryer air, by the time his diaper needs changing his skin feels like there is absolutely no moisture left in it.  Either I'm going to need to lotion him more often, or I'm going to have to find something better to use during the day.  I'm currently using Vanicream during the day and I'm thinking of switching that over to Eucerin.  I just need something that's more long term moisturizing without being really messy.  Does something like that even exist?

Anyway, over the weekend we had our family pictures taken FOR THE FIRST TIME EVER!!! :) by our friend Amber.  I haven't seen them yet, but I'm betting they are amazing.  I've seen some of her previous work and I'm impressed with it.  That girls got skills.  I'm excited to see the finished product and I'll def. share some here when I get them.  If you want to check her out here's her facebook page Amber Katrina Photography.

My grumpasaurus rex

I'm not winning any bonus points with Wyatt today.  He is in the worst mood ever.  If he were a dinosaur, he would be a grumpasaurus rex, because he's grumpy and has tiny little arms that he can't do anything with. hahaha I crack myself up :)

Anyway, I figure he must be going through a growth spurt or something.  His skin has been super sensitive lately.  Sometimes just picking him up makes him cry, so it's a little frustrating.  Do I let him just lay there and cry and shove toys in his face to try and distract him? Or do I pick him up and potentially make it worse? Or is his wee wee bothering him from his surgery last week.  I've decided there is no right answer so I just put him down for a nap.  He must have been tired because he's been sleeping for almost an hour.

Someone told me that kids do this right before they meet a new developmental milestone.  I guess it makes sense that his body would be extra tired from all the growing he's trying to do, physically and mentally.  And he's accomplished a lot lately.  Supported sitting, tummy time, trying rice cereal... maybe he's getting ready to start rolling over!  That would be exciting!..  Kind of... there'd be no more laying on the couch.  Or maybe I'll just have to build barricades around him.  I wonder if people have kids that just roll across entire rooms.  Okay now my imagination is starting to get the better of me. :)

Hopefully he'll be happier when he wakes up.  I don't really have any room to complain though, the little guy is SUCH a good baby 95% of the time :) 

Supported sitting

Today Wyatt sat in his little chair ALL BY HIMSELF!  

He's getting big so fast! :)

So proud of my little man.

And he's started to get a laugh now.  He's been doing this little grunt when he smiles super big which I assume is him laughing, but last night it actually sort of resembled a laugh.  It was too cute!

Time flies when you're having fun

Life has been crazy lately!  But a good crazy :)
Wyatt is now 6.5 months old, 3.5 months adjusted.
He just had his 6 month checkup.  He's 22 inches long and weighs 10 lbs! My baby boy is in the double digits now.  :/  I know it's a good thing, but it made me sad too because it means he's growing up. I asked what percentile he was in for his adjusted age and this little guy isn't even on the charts yet.  He's growing at his own pace and the dr. said he isn't worried about him at all.  Yay!  I asked where his size falls on the chart and he said that Wyatt is like a 1-1.5 month old baby.  He's still so little even though I feel like he's so big.

Here's a picture recap of the last two months

We blessed Wyatt in our church in September and he looked absolutely adorable in his white romper!

 Wyatt learned a new trick with daddy

 I love my boys!

 Wyatt went to the beach for the first time, this is at Huntington Beach and we also went to Laguna Beach with his Great Grandma Pope, Great Uncle James and Great Aunt Kelly :)  We think they're pretty great.

 He found his tongue

 Went on his first road trip. We went to San Diego and he slept in the car almost the entire way.

 It's possible that he's the cutest yawner ever

 He thinks he's a big boy now and tries to hold his own bottle

 I'm imagining him saying "Moooooooommm, stop! You're embarrassing me!" haha

 Wyatt loves to go on walks

 He started reaching up for objects about 2 weeks ago!

Wyatt hung out with a new friend at the pumpkin patch

A heat wave came in the day we went to the pumpkin patch so it was a little warmer than we had expected it to be.  Luckily there were a lot of trees shading us but Wyatt still overheated and got a ton of little white bubbles all over his head.  His derm later explained to us that the bubbles were created by sweat trying to get through his skin, but his skin is too thick so it gets trapped.

Wyatt still loves bath time for the most part.  We tried upping his baths to 2 a day and he started getting more blisters {the drier air could have something to do with that too} so we went back to 1 a day and 1 bleach bath a week.

He had his first out of hospital appt with his derm, Dr. Takahashi.  She is very happy with how he looks and told us to keep doing what we're doing.

Wyatt was invited and went to a dermatology conference as a case study.  Lots of derms from all over California came in and met him and asked us lots of questions about his skin history and his daily care.  I'll be honest, it was pretty boring, but I was happy to help others to learn about his skin since it's not something they see very often.
Here's a few pictures of what his skin has looked like recently.  Just a warning, some are a little gross looking.

 I would say that the following pictures depict a baseline for Wyatt.  His hands pretty much always look like this

His flex points seem to be affected more than anywhere else on his body

About a week ago he broke out in a ton of blisters all over his legs.  Thankfully when he woke up the blisters had all ruptured and he was feeling a lot better

Luckily the worst areas get covered while he's wearing clothes.  I say luckily because I like to think the clothing is just an extra barrier of protection to help prevent infections.

We got a jogging stroller so that Wyatt can join us on our runs since he loves going outside so much :)

 He found his hands and now he can't keep them in his mouth

 He was a little Tiger for Halloween

Thursday was our first successful day with tummy time.  He usually just buries his face in the ground and cries, but this time he looked around for a couple of minutes first.

 

 He is now officially a supported sitter!

Such a happy boy! 

Over the weekend Wyatt was circumcised.   We had to be to the hospital by 5:30 am because he was the first one on the list.  Since he could only have clear liquids 2-4 hours before the procedure he got to try apple juice, which he threw up {that may have been my fault, I don't think I diluted it enough} and he tried Pedialite which he kept down great.

Because he's out of the 'newborn' stage he had to be put under general anesthesia and intubated.  I was really nervous about that because he's never been put under before, but everything went really smoothly.  Since he's only 15 weeks adjusted he had to spend the night in the hospital {if it had been up to the dr. we would have gone home, but he had to follow protocol}.

Here's my sleepy boys while we waited for Wyatt to be taken back

 Here's Wyatt right after he came out of surgery.  The hospital had an EB friendly supply kit that they used with him which was great.  The only trauma I could find on his skin {other than his pp} was on his face.  When he was extubated following the procedure, the safe tape tore some skin off of his cheeks.  I'm happy with how great he looks and 2 days later his skin is almost completely healed.

When Wyatt was moved from recovery to the floor, He ate a little bit and then passed out.  My little man was sooooo tired!

The next morning he was all smiles and back to his normal self :)

I'm so grateful to have this little guy in my life!  I can't believe it's already been a year since my journey with IVF began.  He's gone from an egg to an embryo to a fetus to a preemie to my chunky little man.  Now that I have him I can't imagine life without him. 

It feels like he's been a little baby forever, but I have a feeling that things are going to start moving a lot faster.  He tried rice cereal for the first time yesterday and I'm sure he'll be rolling over before I know it :)