Making progress

We're working on sitting up!! 

I've been working with Wyatt a lot on sitting up over the past few weeks by holding him at his hips.  He can't sit on his own yet, but last night I had the idea of putting his little boppy around him to see if that would be enough support.  I was sooo excited to see how well he did with that!  He sat up like this for about 3-4 minutes before he got tired and fell back.

Daddy came home while we were sitting and so he came over and started playing with Wyatt.  I snapped this picture of the two of them and I LOVE that their expressions are exactly the same.  Like father like son!! :)

I've also been trying to figure out a way to work with him where he can put pressure on the bottom of his feet.  Most babies you can just pick up by the sides and try to make them stand up while holding them, but Wyatt's skin just can't handle that pressure.  I've always known he was sensitive on his sides so I try to not pick him up that way.  Well... I've now learned that he is SUPER sensitive and still very fragile.  When he had his OT assessment a couple of weeks ago, Wyatt regular OT came as well as her supervisor.  The supervisor had never worked with Wyatt before so I quickly explained his skin condition and that he's fragile and blisters easily so we needed to be gentle while working with him.  A couple of hours after the therapy session Wyatt was pretty upset and when we took his clothes off for his bath we discovered this

 

I had forgotten to tell the supervisor to not pick Wyatt up by his sides until it was too late.  I didn't realize there was going to be this kind of damage though!  I was really surprised to find this owie.  It's about the size of a half dollar.

  I'm so glad he can still be such a happy boy with wounds like this because I think I would just be a big baby and cry all day!

His legs were also covered in blisters.  This happened as a result of trying to put pressure on the bottom of Wyatt's feet.  The supervisor would hold his leg and gently push his foot onto a stuffed animal.  From what I can tell she was being gentle so I am by no means upset with her.  This is just a part of what being Wyatt is.  {She was really upset when she found out about all of his owies from the therapy session though}  The blister pictured below is a ginormous one that popped right before we were going to aquaphor him.

 All the angry red spots are blisters surfacing from under his skin.

He cried a lot while we were getting him ready for bed, his little tears make my heart sad

But then he saw me with the camera and stopped crying haha

He was dosed with Tylenol for the pain and went to bed pretty good.  He woke up screaming around 1 or 2 in the morning so we gave him Tylenol again and it helped him get through the night.

This is how Wyatts chest looked the next day.  His curse is also a blessing.  Because he produces skin so quickly, he also heals pretty quickly.  Within a week I couldn't even tell he'd been hurt.

 This was his hand that night though.  This poor kid had blister after blister after blister for a week and a half straight.  We had to give him Tylenol 5 times over that span of time.  Oh well... we had a pretty good drug free run going, I guess it had to end sometime.

So anyway, because of all of this, I have been trying to come up with a different way for Wyatt to put pressure on his feet without anyone actually making him do it.  And then I was like DUH, try a jumper.

I've stayed away from jumpers and walkers and things of that nature because most therapists that I talk with say they inhibit the mobility of babies and actually holds them back a little.  Now I'm thinking it's time to look into it.  So I hung a jumper in one of my doorways and put Wyatt in.

He didn't totally dig it at first, but after his 3rd session he's doing better!  He tolerates it for 10-20 minutes and it's fun watching him sway back and forth on his feet.

 His left foot

 and right foot

 He was soooo bored, or maybe tired.  Either way he was really spacey the whole time he was in it.

I'm going to bring up using the jumper at Wyatt OT session tomorrow and see what his therapist has to say about it.  If she doesn't like it, hopefully she'll have some good suggestions for other things that might work better.

So yay for progress!

Rolling over, supported sitting and practicing putting pressure on feet.  Wyatt has had a BUSY two weeks!

OT/PT review

We got what we wanted!!! Wyatt has been approved for PT 1x/week and OT 1x/week!!!  

He gets to keep occupational therapist which is awesome because we LOVE her and the regional center is searching for a PT that has previously worked with children that have uber sensitive/fragile skin.  Yay!!! I'm so happy that Wyatt is going to be getting this extra therapy and hope that it's exactly what he needs to continue to improve his development.

p.s. if you haven't already, please consider donating to our fundraiser.  Just click the donate button at towards the top right of this page and you can donate through paypal.  Thank you!

Rolling over!

I think Wyatt and I must be in tune with eachother.  I wrote a post yesterday about being worried about his development and then today he rolled over.  What?!  I'M SO EXCITED!!!!!!!!!

My little man rolled over!!!!!!

After he did it the first time I rolled him back onto his tummy to see if he would do it again.  And he did!  I got him to go from his tummy to his back SEVEN times!  

{no, I don't think my voice could go any higher lol}

And then I decided I should stop torturing him and reward him with food :)

I'm so proud of my little guy!  We are definitely going to be practicing lots and lots of rolling over this week so that he can get it perfected :)

He'll catch up... right?

I'm trying SO hard to not compare Wyatt to other babies.. but dang it, it's getting kind of tough!  I can totally handle babies his age doing way more stuff than he can.  I've always looked at him as his adjusted age {3 months behind}.  He's 10 months now, so he's like a 7 month old.  And I can handle him not doing things babies his adjusted age are doing because I know he's delayed.

But I'm starting to go a little crazy that babies that were born 5 or 6 months after Wyatt are doing things he isn't.  They're sitting up all by themselves, and pulling to stand.  Wyatt doesn't even roll over yet!  But I know Wyatt has more than just preemie things to deal with here.  I'm sure his skin is the main cause for his snail paced development in motor skills.  Sigh.  I just can't wait until he can do all the things everyone else's babies are doing.  I want him to start reaching some major milestones dang it!  The dr.'s initially said he'd catch up by the time he was 1 year old.  I don't know if that's actual or adjusted but either way, that gives him 2-5 months.  Here's to hoping it's somewhere between those numbers!

Sending off the lantern

I love our new tradition of sending off a sky lantern for how old Michael turns every year. We let it go in a park by our house that's in a more industrial area and next to a golf course so there weren't buildings nearby. The lantern flew perfectly and probably went 1000 feet high before the light finally winked out.
This is going to be such a fun way to celebrate him every year :)

Happy birthday baby

Dear Michael,

I can't believe it's already been a whole year since we lost you.  A lot has been going on down here, but you're still on my mind every day.  I remember the day you were born so well it's almost like it was just last week.  Daddy held you in his hands and looked at you with so much love in his eyes.  He didn't want to give your little body back to the nurse.  I wish I would have held you... I wish I would have looked at you a little longer... maybe it's better that I didn't.  Your earthly body was in pretty bad shape and this way I only remember your perfections.  We bonded differently, you and I, and I'll always have that.

It's been hard not having you around.  I think of you every day, but mostly at night time, or early in the morning when I'm rocking Wyatt.  I bet you would have liked rocking in that rocking chair with me.  I'm a pretty good rocker.  It makes me sad that I'll never get to snuggle with you, but I just try to remind myself that you are in a better place. 

There are little things around the house that remind me of you, but it's in a happy way, like the Willow Tree family your daddy gave me for Valentines day.  And I often look at Wyatt and wonder how alike you two would look if you were still here.  I can tell you love your brother so much!  I can sometimes feel your presence around him.  The first few months of his life I could feel you around him all the time. You aren't around as much as you used to be, but maybe that's just because Heavenly Father needs you more than Wyatt does now.  You are such a good brother for being there for Wyatt when he needed you.  Thanks for being a big boy and watching out for your little brother.

A few weeks ago daddy took me out riding in Glamis to the place where we wanted to spread your ashes.  For awhile now I've been questioning whether or not I wanted to go through with it.  When we got there daddy and I looked at eachother and decided we want to keep you at home with us.  Spreading your ashes just feels so final.  Even though you aren't here with us, I want to always feel like your spirit is.  One night while daddy and I were in Glamis we looked up to see chinese sky lanterns in the sky.  As I watched those little lanterns float through the air I thought of you.  So every year for your birthday, we're going to send off one sky lantern for how many years old you are.  Since you aren't here to make your wish, I'll make one for you, I'm pretty sure I know what you would wish for.

Happy birthday baby,
Mommy loves you.

The last ultrasound

This was the last ultrasound of our two boys together.

I recorded it because Jared was at work and I wanted him to be able to see it.

 

How has a year already gone by?

One year ago today...

One year ago today my life was turned upside down.

Up until that point everything had been going perfect... er... as perfect as 'life' can go I guess.

Jared and I had hiccups trying to get pregnant naturally, but IVF had worked for us.  And the first time.  Not only had it worked, but both of my precious embryos attached and grew into little tinies.  Or, as I liked to call them, my " little bean sprouts".

I successfully made it through the first trimester.  The odds of miscarrying had gone down to 2% after I reached 14 weeks so I figured I was in the clear.  I finally let myself relax a little.  I started planning the nursery, filling my pinterest page with cute twin things.  Jared and I picked boy and girl names that we liked.  16 weeks came along and I convinced my dr. to try and determine the genders.  Things started to become real and I really thought everything was going to be okay... And then my water broke.

It was so hard for me to accept that there was absolutely nothing I could do for Michael.  I'm his mom.  I'm supposed to protect him and make sure he is safe and healthy.  I had waited for him for so long, how could I lose him now?  But too much fluid had been lost and it was only a matter of time. 

Jared and I experienced miracles during my 10 days in the hospital and in the end we were blessed with Wyatt's survival, but somehow it doesn't make it any easier to have lost one of our little boys.  {It does make us all the more grateful for Wyatt though.}

I didn't allow myself to really grieve the loss of Michael until after Wyatt came.  Since his arrival, I have had my sad days where I deal with it... it's still a little tough for me to see families with twin boys.  It's hard to stop myself from being a little jealous.  I feel like my body failed me, twice.  I couldn't carry Michael long enough for him to survive and I barely carried Wyatt long enough.  But I can safely say that after a year I'm starting to heal.  I'm starting to get to a place where I can just be happy for others.

Knees & Toes

I was playing around with my camera tonight and took some cute bath pictures of Wyatt

Then I bribed Jared to take over and stuck the super zoom lens on the camera while Jared was lubing Wyatt up with aquaphor after his bath.  I don't know why I hadn't thought of using this lens before!  I have to stand farther away from Wyatt, but I can zoom in SO far and get pretty good detail.  It's always so hard for me to get a good shot of what Wyatt's skin looks like, but this lens does a pretty amazing job.

This is what his left knee and foot look like right now

 Since the weather has been crazy and kind of all over the place it's been really hard to keep on top of Wyatts skin.  He's been getting a lot of extra lotion and the humidifier has been running at full capacity for about a week now.  Luckily it rained last night so there's more moisture in the air at the moment.  I've noticed that his skin has a routine that it goes through, it looks great, then slowly builds up, then looks super bad, then it gets really peely, and just when I'm about to give up hope on it looking better, it starts looking better, and then it looks awesome, then it starts to build up...  at least that's how it's been so far and this cycle seems to take several weeks to go through.  I feel so bad for Wyatt when he gets to the part where there's a lot of skin buildup and it starts to get peely.  He gets really deep cracks in his hands and feet that look like they really hurt.  You can see one of the cracks on his ankle in the picture above.  I'll try to remember to take pictures of his skin when it starts looking awesome again so I can do a side by side comparison.

So Wyatt made a new friend this weekend!

 This little guys mom and I have been friends for awhile now and finally met for the first time this weekend!  D is a preemie just like Wyatt and it was so fun to see his cute little face in person.  I just love his curls!  Wyatt was, of course, in serious face mode and was not about to pose for a picture {and Jared doesn't like taking a hundred million just to get the perfect 'one'}

I know Wyatt has a big head for the size of his body, but it was kind of funny seeing just how giant it is compared to other babies his adjusted age.  I don't know if I've mentioned it but, his body isn't on the charts yet, and his head is somewhere between the 10th and 25th percentile for his adj. age {6.5 months}  I say that just means he is going to be super smart... right?

It suits him :)

To finish our weekend, daddy decided it's never too early to start learning about 4 wheelers and read about them to Wyatt.