Milk mommies

The month of March has been kind of crazy and Wyatt has definitely been keeping me on my toes.  He keeps changing his schedule around.  He wants to eat a lot and then he doesn't, make up your mind kid! haha I'm trying not to stress about it but I'm at the tail end of my breastmilk supply and it kills me to have any of it wasted.  I tried for a little while to get my supply back by taking fenugreek & mother's milk & pumping every 3 hours... but I'm thinking it's not going to happen for me.  I've resorted to trying to find donor milk.  A friend of mine told me about Human Milk 4 Human Babies and so far I've met 3 lovely ladies that have donated some milk to Wyatt.  Their donations will feed him for about 2.5 weeks! (:  I'm so grateful for the generosity they have showed me and hope to be able to find more mommies that can help us out.

One of my sisters is kind of grossed out about me giving Wyatt milk from other moms, but here's my 2 top reasons for doing it.

1. Nothing beats breast milk.  Formula companies are always looking for ways to make their 'recipe' as close to breast milk as they can get so why not try to give your kid the real thing?

2. Wyatt doesn't tolerate formula.  At. All.  I've tried giving it to him and almost every time he throws up the entire bottle.  His little tummy just can't handle it.

Before I ever had a child I thought the idea of milk sharing was gross.  Now I realize what I blessing it is and that it really isn't 'gross'.  Breast milk is food, whether it's from you or from someone else.  Back in the day they used to have wet nurses and it wasn't gross then! (:

Anyway, I love that there is a place where women can go for support like this and plan to give back to other mommies when I have my next baby.

If you have access milk that you are not in need of, please consider finding a mommy in need.  The gift of mothers milk just doesn't compare and you will be able to help a little baby somewhere grow and thrive.

Parents of preemies day

Today is Parents of Preemies Day.

 We are the proud parents of an amazing preemie.

who beat the odds

and survived

Our preemie is now almost 11 months old

and he is such a joy in our lives.

Born at 2lbs. 4 oz. he now weighs 15lb 3oz!

We love you little man!

Extended family

Over the last 10 months my extended family has grown to be sooo big.  You see, anyone and everyone affected by ichthyosis in one way or another, I immediately consider as family.  I started building this family the moment Wyatt was diagnosed with EHK.  I haven't had the privilege of meeting most of my new extended family, but I have had the opportunity to meet a few.  Today was one of those special days.

This morning we packed up Wyatt and met up with two other families for breakfast.  Hugo & Claudia with their boys Gabriel & Ethan, and Isaac & Alicia with their son Efrain.

{Jared & I met Hugo & Claudia last June at FIRST's regional conference, but this was our first time meeting Isaac & Alicia.}

For me, today was like a mini family reunion.  As soon as I saw everyone, it felt like I was seeing family I hadn't seen in a long time.  It was so fun to see how big Gabriel and Ethan are now, compared to last year, and it was awesome to finally meet Isaac, Alicia & Efrain in person. 

Ethan has Lamellar Ichthyosis

Efrain has Harlequin Ichthyosis 

{which is the rarest form of ichthyosis. In fact, it's so rare, it's exact incidence is unknown}

 Aren't they so cute?!  I LOVED seeing the three of them together!

The restaurant didn't have a table big enough for all of us, so us girls sat together and the boys sat together.

It was soooo nice to be able to talk with two other moms that just get it.  We talked about our birth experience with our babies, {all very different, but all very traumatic}, the different lotions we use and the skin care routine, how we deal with the stares of unknowing strangers...  I loved being able to just talk with them and to hear how it is for them too.  I'm so grateful that we all got to get together this morning.  And luckily Wyatt was a good boy the whole time (:  Actually, all 4 boys were!

I'm looking forward to more get togethers in the future and am even more anxious for it to be next year already so we can see more of our 'family' at the regional conference!

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!  Only 64 days left until race day!

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!