Thursday, July 12, 2012

Always Cheering

Leo last June, 2011 at 13 months old

I love our early intervention therapist.  They are on our side.  They want the best for Leo.  They recognize how far he has come in the last year. 

Today was Leo's one year meeting.  The therapists all had to share how Leo has progressed during the last year and what level he is at developmentally now.  Bottom line Leo is at about a 9 month level for a lot of areas and even lower for feeding, oral and communication. 

Leo is two years old.  This could be a depressing situation, but the therapists didn't even give me opportunity to go there.  They all kept pointing out how far he has come.  How a year ago he just laid there and did nothing.  Could not sit up, could not lift up his head, the list could go on and on. 

I just picked out a walker for him with our PT's help.  He is moving.  He is engaging.  He has a spark he didn't have a year ago.  Yes, we have a long way to go, but I am thankful that God has surrounded us with an awesome group of therapists to cheer us on. 

 Leo and Emma (the dog) are now working together.
Leo pulled the spatula from the dishwasher and 
Emma enjoyed licking off the remnants of our dinner. 

Monday, July 9, 2012

A Day In The Life Of A Kind Of Crazy

Yesterday we lived the title of our blog.  Our day began with church and me unexpectedly serving in the nursery.  I realized just how loved and well taken care of Leo is by our nursery staff.  At first they didn't realize I was his mom and so it was cool to sit back and watch them interact and play ball with him.  They look out for him realizing he may need some extra "protecting".

After church, we headed home for a quick lunch and packing up of 6 coolers and lots of bags.  We then headed off to the pool where an awesome staff helped us unload the vans and get everything to our picnic area.  We set up and were ready to celebrate Jonathan's 6th birthday with family and friends.  Everyone had a great time and Jonathan deemed it "his best birthday ever!"  It really was a good time and also a great time for me to catch up with some of my mom friends. 

We arrived home from the pool at exactly 6:47, my friend Gwen text me as I was pulling in the driveway, and then the craziness really unfolded.  We oversaw 5 boys getting baths, ordered pizza, picked up pizza, unpacked some coolers, put some party stuff away, repacked a cooler, Jeremy threw on real clothes, I just put a shirt over my bathing suit, and were back in the care at exactly 7:35 heading to pick up Aunt Suzy and Andrew.  As we were handing out pizza in the van for the kids to eat as we drove, Jeremy looked at me and said- a kind of crazy! 
I love this picture.  Leo is slowly finding his voice and is now "yelling". 

We picked up Aunt Suzy and Andrew and headed to fireworks.  We had gone to fireworks on the 4th of July only to find out it was a typo in the paper and they weren't on the 4th they were going to be on the 7th- WHAT!!!  Apparently, we weren't the only ones who made this mistake as probably 50 other cars pulled into the parking lot looking for the fireworks.  We went and got ice cream instead.  We were all prepared to go see the fireworks on Saturday night but they were cancelled due to a storm.  So it became a family mission to finally see fireworks last night.  We were glad we went even though we were all exhausted.

We arrived home after ten.  The kids fell into bed and just as I laid down to go to sleep Leo's feeding pump began its familiar dose done beep.  Thankfully Jeremy was heading up the stairs and came to my rescue and turned it off for me. 
I wouldn't trade our craziness for anything!

Monday, July 2, 2012

Glass Half Full or Half Empty

The drama started May 22 and continues. The short version: apparently there is a shortage of reflux medicine- omeprazole to be exact. Our pharmacist has gone above and beyond to work with us and our doctors to guarantee that Leo is never without medicine for his reflux. The upside of this shortage- Leo is now on nexium which has improved his reflux and has him sleeping later and better in the morning. Upside- mom and dad are getting more sleep and Leo is more comfortable.

Found out tonight- apparently- there is now a shortage of nexium. (sigh.) Our pharmacist is determined to find some for Leo and has had her staff calling all over the city today trying to find some that they can personally go pick up. Another upside- we have enough for the next 10 days and I feel like I have my own personal pharmacist working for Leo.

Today at the pool- Ben put about a half of bottle of suntan lotion on my back. The upside- I did NOT get any sunburn on my back.

Today at the pool, a boy was overly curious about Jonathan and his missing leg. The upside -- I do believe the lifeguard, who was sitting within ear shot, also got a nice education on special needs, missing limbs and adoption.

Also at the pool today, a different boy was overly curious about Jonathan and his missing leg. The up side-- This time Jordan appropriately answered all of his questions and I was so proud of how he handled the situation.

This morning Leo had a follow up at the Ears, Nose and Throat doctor, Leo's ears looked great and he doesn't want to see him for 6 months (yea). There is no downside to this one :) The upside-- I went to staples to buy a 2013 planner and I now know what I am doing on January 7, 2013

Friday night I was food shopping at Aldi's and saw and incredible deal on a trampoline (yes at Aldi's). Went home, talked to Jeremy, who went and purchased one on Saturday. He spent at least 3 hours putting it together with "help" in 90 degree heat. The upside- the kids LOVE it!

Sunday, July 1, 2012

Dedication Day Drama

Today was a big day. It was supposed to be a big day. Today was Leo’s dedication Sunday. So the plan was that Kim, Amanda, Tyler, Jordan, Ben, Jonathan and I would stand in front of the congregation at Calvary Chapel, Philadelphia and watch and pray while Pastor Joe held Leo and asked for God’s blessing on his life. (And yes, Leo’s brothers were all well schooled in what not to do while standing in the center of public attention!)

So we expected all the joy and anxiety that goes with a day like this.  The order of the day was family, photographs, food, and that dash of uncertainty that comes with being on center stage.  What we didn’t expect was a minor medical emergency!  

It played out like this: We had just gotten to that critical point of transition on a Sunday morning where you tell the children, “OK, put on your shoes and go climb in the van.”  Leo was in his high chair, taking a feed through his G-tube, and I proceeded to lift him out of his chair, like I had a hundred times before. 

Then it happened.  His feeding tube got tangled in the chair, there was a gentle tug, and then POP, I’m looking at the end of the G-tube “button” that is supposed to be INSIDE Leo. 
My first thoughts went like this:  “How did I do that? Why now?!  We are going to the Emergency Room. What will we say to everyone?!  We are going to the Emergency Room, NOW.” … and … “I just ruined Leo’s big day.”

Kim was much more together.  She was, in fact, amazingly calm.  She got out her big medical binder, her emergency stash of medical supplies, and shooed everybody but Leo and me out of the kitchen.  

Now mind you, Kim and I both knew that parents are supposed to be able to switch these tubes out once every 6 months or so, and I am sure that someone will read this and ask themselves “So what?  What’s the big deal?”

The big deal was that neither Kim nor I had done this before.   The big deal is that this tube is what makes it possible for Leo to eat.  The big deal is that to solve this problem you have to act like you know what you are doing and do something you’d much rather leave to a doctor or a nurse!

Well, there’s a first time for everything.  I got the replacement tube back in (all the while worrying that I was hurting the poor little guy, or making matters worse.)  We followed the directions.

It was just like putting together a model, “insert tab A into slot B” except of course that “slot B” was a little living, feeling being that you love and are sworn to protect!

So, Leo had his big day after all.  He smiled and charmed everybody, and all the Shafers are doing just fine.  It ended up being a good day; a really good day; a really good day that I won’t forget any time soon!