Did you just say aqua therapy?!

Wyatt's physical therapy officially started 2 Mondays ago.  He had his assessment & his first official appointment was this last Monday.  Let me tell you, with all of his therapy appointments, it is a sigh of relief that they come to my house!  Anyway, while assessing Wyatt, the PT observed that Wyatt didn't seem especially comfortable with being moved around, especially new movement.  She asked if I had ever considered aquatic therapy.  YYYAAAAAAAAYYYYYYYYYY!!!!!!  I totally have heard of aquatic therapy, in fact, I know of another boy with ichthyosis that love love loves it.  I got pretty excited and brought it up a couple of more times during the session, so she told me that she'd look into it for Wyatt.  It turns out that most children don't get to start this type of therapy until they are about 18 months old.  However, because of Wyatt's circumstances, his PT is going to try hard to get it through anyway.  

We go to see his derm today & as soon as she gives her nod of approval, the PT is going to get the ball rolling.  The therapy starts May and goes through September {it's at the Rose Bowl, so they use the therapy pool there during the football off season}, so our timing is kind of perfect.  

The only thing that really worries me is, the pool is outside, and the pool is heated, so I worry about Wyatt overheating.  It's not enough to deter me trying to get him in though.  I think the benefits of this type of therapy will far outnumber the potential detriments.  It'll be just like everything else with Wyatt so far...

trial & error. :)

1st world problems

Last night, while I was in the middle of doing my dishes, the water shut off.

What.

We live in an area that gets water from a well.  It's small and is owned and run by the home owners in this area.  Luckily my father in law is on the water board and so I have a quick line to info on what the deal is.  He told me that there was a small break in one area that he was going to repair, and a big break in the line in another place that they were going to have to call out 'the professionals' to fix.  I asked for an ETA on the water turning back on and was informed in would be out all night.

Okay. Great.

So that's all fine and great for Jared and I, but Wyatt HAS to have his bath every night.  Why couldn't the water have waited 15 minutes more to shut off?  I would have had his bath water all done by then!  Sigh.  Luckily Wyatt's Godparents live nearby and they let us come over to use their tub.  I felt a little ridiculous with all of the things I needed to bring!  

A cleaner with bleach & a scrubbie {I clean the tub before Wyatt gets his bath every night}

Aveeno baby wash

handtowel {to put under his head}

washcloth

cup thingy {to pour water on Wyatt}

towel

jammies

diaper

aquaphor & wipe warmer

all of my dirty bottles to clean {In case the water didn't turn back on}

bottle cleaning stuff

blanket

clean bottle & breastmilk to warm up over there

I swear it feels like I'm going on vacation whenever I take Wyatt anywhere haha

Wyatt's bath is like medicine for his skin though.  He absolutely needs it.  I'm grateful that we live in a place that has running water!  I'm grateful that we have friends nearby that lets us come over and use their facilities in a pinch.  I'm grateful that we have electricity.  The power has been out a couple of times since Wyatt came home and it's amazing how many things it affects.  He has his wipe warmers, humidifier, noise maker that are all powered by electricity, plus all of the breast milk for him is stored in my fridge & freezer.  We would be in so much trouble if the power went out long term!  It might not be a bad idea to invest in a generator...

This morning when I woke up the water was back on, hooray!  It's almost funny how many times I tried to turn the water on last night before remembering it wasn't going to work.  I try not to take luxuries like that for granted, but it's so easy to!  I definitely need to have more of an emergency supply of water for future 'emergencies'.

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!