Post Pattys Day

Life seems to never slow down. 

Lanie:

School is constant (of course). She may only be there 3 1/2 hours for Kindegarten but after she gets home, we spend alot of time doing homework, reading school books and practicing other skills. Shes doing very well and loves that she can depend on time being spent concentrating 100% on her. I enjoy listening to her read books so much that we get books from her book shelf to read for fun and practice. I am amazed at how fast she has learned and how well she is doing. Her report card are awesome. This last one was all 3's (basic advanced) and 4's (above grade level/advanced). On St Patrick's Day she kept telling us how a Lepracauhn got into their classroom and left foot prints all over the tables. All the kids laughed about it ever since. When she came home that day she came outta her room and said "Yep that naughty Lepracauhn messed up my bed". I laughed so hard. She had actually just forgot to make her bed that morning.

Speaking of St Patty's day, Lanie and Liam helped me make a cake to celebrate. It was Liam's first time ever helping to bake. We made a green cake with chocolate chips. Liam threw in several chocolate chips all by himself. He was so proud of himself. For dinner I made chicken, mashed potatoes, bread and alfredo. I colored the alfredo green. The kids got a kick outta that. 

Liam:

He's been doing good since his discharge early this month.

As of two night ago he's finally tolerating full night feeds of 80mls per hour.

He hasn't used anti nausia meds in 2 days either.

It just takes Liam a long time to get back to himself after being sick.

Miraculously he hasn't seemed to have lost ANY weight this round!

However he is still dealing with constipation pretty bad.

Last 3 nights he's gotten mirilax every night.

He's been waking up crying in pain from it.

He will continue his mirilax regimen for as long as we can forsee.

Doctors just don't want him to get backed up again.

Liam outgrew his braces and we have to start the process of getting new ones.

If all goes well then insurance will pay for this set.

We're praying so because the new ones they want him to get are even more expensive than the last pair.

Liam currently has a stoma (area around his Gtube) infection and is on antibiotics for that.

Poor boy just can't catch a break sometimes.

Liam is trying to talk alot more.

It's not always clear even to us but he's making an effort.

Sometimes he tried to tell us something and we just don't understand.

Thats very frustrating for everyone.

Liam is getting taller but he's going so slowly that he still fits into last years spring/summer clothes.

That good news for our bank account at least.

GI is just trying to get Liam up into the 10th/15th percentile for size and weight and he's going to stop pushing he says. He is considering now that Liam just may be small no matter what we do. No matter how much calories we literally pump into him. 

I see Liam take all his tube feeds and then eat the whole house by mouth almost every day and he isn't gaining. I am leaning towards the fact that he will be small like I was when I was little no matter what.

BUT...

Then theres the theory that if we do the right repair that Liam's right lung won't have to work so hard,

won't use so many calories, and will just take off growing like a weed after.

That's something we just can't deny as a possibility. 

Which is why we're waiting to see his surgeon at Children's.

Every other one of Liam's specialist and doctors says it's time, but the last call is up to Dr Jones.

The plan is also to repair his hiatal hernia at the same time and take out his mediport.

This surgery will be riskier than the others,

even his first repair.

Why?

Because Liam has a ton of scar tissue now and to do these surgeries it requires that Liam's chest cavity be opened up. No lapriscoptic surgery can be done this time around.

As a mother who was alone in the parent's kitchen on the 15th floor of UCSF for Liam's last repair but we were told last minute he was having and his daddy and grandma couldn't make it there until after Liam was out and stabalized, I am feeling it all over again.

Anxiety.

Fear.

I am so scared to have to go through this again.

I am so scared that he has to go through this again.

You never want to see your child suffer and it seems most of Liam's life has been suffering and painful.

If you were to see him,

talk to him,

play with him,

you would never know it.

Liam has more strength than anyone I have ever met.

He is an inspiration.

My super hero.

Me:

I've been having my own medical problems. I haven't shared in detail really whats been going on.

I have cyst on my ovaries.

I've been in pain since January.

In februrary I was in so much pain I took  myself to ER.

Thats where they found the cyst.

After following up with a GYNO a few days later,

we've been trying to get this figured out.

They put me on a birth control because the hormone was supposed to get rid of the cyst.

Pain meds of any kind weren't helping at all.

During the second month on those pills,

I bleed the entire month.

It was miserable.

I had no energy.

I went back last week and they switched the BC to a different kind.

Thankfully the bleeding has stopped as of 2 days ago.

I still have pain but some hours are better than others.

I'm waiting on a call to go have an ultrasound done to see if they've shrunk.

They believe the type I have is the kind that grow and grow until they pop then start regrowing again.

This means that even though I had my tubes tied Ill have to stay on BC.

It also means that the pain isn't going to ever completely go away.

As long as it doesn't get as bad as it did I think I can live lol.

They found out last week that I have a bladder infection too.

I'm at the tail end of the antibiotics and glad to be almost over it.

And I'm anemic from bleeding so much.

Yea I asked them to test to be sure because that was alot of bleeding.

I had been dizzy with no energy what so ever.

Now I'm on iron pills and am starting to see the symptoms get better.

Not perfect but  BETTER!

Better is ALWAYS good in my book.

I hate dealing with my own medical problems and have been prone to put them off until they can't be put off any longer.

I figure I've got my hands full with Liam and no time for me.

BUT I know better.

If I don't take care of myself,

I won't be able to take care of Little Lamb,

or Lanie Bug.

I feel like even though we have the dark cloud (liams pending surgery) hanging over our heads that things are good. That we can get through this like we've gotten through the last 2 years and 8 months:

With Love and faith.