Merry Christmas to All!

Christmas is hands down my most favorite time of the year.  I probably began listening to Christmas carols a bit prematurely and I will be the first to admit I began putting up my decorations the weekend before Thanksgiving.  It is a fun and busy time of the year for our family.  Isaac's big brother, Gabe turned 4 years old a week before Christmas, we traveled across the state visiting family, watched about every kids Christmas movie out there and we ate way more cookies and treats than one needs to in a month.  It was all well worth it though.  We have great memories and I know the boys had fun.  

Isaac sort of reminded me of an elf this year.  I will also shamelessly admit that I allowed his diet include elf-like indulgences of chocolate milk, fudge, cookies and rice krispy treats. 

We kicked off holiday season with a trip to our Zoo-Lights!  They were awesome!

Isaac helped decorate (er... undecorate) our tree.

Gabe supervised and taste-tested all cookies.

Isaac and Gabe both got really good at wheeling.....

And I enjoyed every snuggle moment I could with these two little monkeys.  

As I sat at Christmas Eve church service at my childhood church, I couldn't help but reflect on this year and all of the blessings that I have been given.  This church, the one that Dan and I were married in, though aren't members as we do not live nearby, have been praying for Isaac ever since they heard of Isaac's surgeries and struggles.  He is continued to be prayed for by this loving community and many other communities.  I was so grateful that he was able to be at this church this Christmas Eve and be a part of the service.  (He and Gabe carried up the horses to the manger scene!).  

The Hymn of the carols reminded me of Christ's love for us all and the light from our candles gave me hope for the future.  I hope that all of you had a wonderful Christmas full of love, peace and joy.  

Zippy in the ZipZac

Watch out world.... Isaac can move and groove!

It doesn't matter how kids get around; when they do.... your life changes.  You must babyproof!  And life will never be the same....

I remember when Gabe, my first born was a wobbly toddler on his feet.  Toddling, falling, and crawling all over to get to what he wanted.  It was his job to explore his world and it was my job to keep him safe.

Here I am nearly 3 years after the above picture, back at the point of baby proofing my house and finding the best ways to keep my little mover out of trouble.

It is not quite the same as a walker, but the premise is similar   When they are ready and determined they will get where they want one way or another.  I don't have to worry about gating the upstairs steps, but we have to keep the basement door shut.  Falling down the stairs is scary enough, but falling while strapped in a chair could be really bad.  The bathroom door needs to stay shut as I found him with his hands all over the toilet seat the other day and he opens all the kitchen drawers that he can reach.  As you can see from the picture, he loves taking ornaments off the tree too.

Despite the challenges of the active toddler, I really am so thankful that not only is there the perfect chair that fits him to get around in, but that he has the strength in his arms to use that chair.  It might not be the way I once envisioned his first "steps" but I couldn't be more proud of the way he has accomplished his own milestone of moving.

Isaac is zippy
http://www.youtube.com/watch?v=_oZE1hvkRMM&feature=plcp

Back in my arms again

My cuddle bug is back in my arms and I can cuddle him all I want!  God is good!  I can't even explain how wonderful it was to hold Isaac tight against me.  For 7 weeks he has had his metal fixator around his front and sides keeping cuddle contact pretty limited.  

This morning, Isaac got his fixator removed and had a scope done on his bladder.  As you know, we couldn't wait for this day since, well, before his surgery.  It was all a relatively short procedure.  First, his urologist came out after his surgery this morning and was pleased with how his bladder looks and he took out his bladder tube.  Before his closure surgery, his bladder was inside out and split in two halves.  They have brought the halves together and right-side in (if that's even a word) and today he told us that it looks good and is in the shape of a ball!  It is incredible what our doctors have done for Isaac.  

Then his orthosurgeon came out and gave us this bag...

This is what was his fixator.  And I was shocked to know that the metal pins that were in his bones were not just pins.  They were pointed metal screws!  We will certainly put this in Isaac's baby book.  I am pretty sure when he brings home a girl, he can show her his baby book and pull this one out to show her just how tough he is.  I mean, how many guys can do that, right?  He deserves those bragging rights.

Isaac's pin sites will need a few days to heal and then he can have a bath.  I am sure you are all thinking, that's great he probably needs a bath after getting those pins out.  But it's not just great or routine for us..... it's pretty awesome considering...... he has NEVER had a bath.  17 months and still getting sponge baths!  That will soon all change and I can not wait to see him splash in the water!

We made it home and I can already see a change in his little personality.  It's not that he was difficult or unhappy before, but after having him home and holding him, we can tell that he is so much more comfortable now.  He has even rolled the best he ever has in his wheelchair.  It's like he is home in his house and home in his skin.

Today, we have so much gratitude.  We have gratitude for our family, our friends, our prayer warriors, our supporters, all of the churches keeping Isaac in their prayers, our doctors, Isaac's nurses, and our God.  God is working through so many people to help Isaac be his best.  It is so humbling to witness God's love and healing in so many ways.  Thank you all.

Isaac-isms

Despite having his metal fixator around his mid-section, he continues to make us smile with all of his little....Isaac-isms.

Before I share his little Isaac-isms, here is an update on his medical care. He has been doing well and I am happy to say we have not been to the hospital since our last update!  He does have more medical care to do at home like cleaning his pin sites twice daily, more meds than usual, and keeping up on nutrition.  His feeding has been by far the biggest challenge and been keeping me busy.  Getting 950 calories into a picky toddler is like a game .  Some days he's reached the goal and it is satisfying.   When he's not eating, it can be so frustrating.  I am finding different tricks with his eating.  Keeping him occupied seems to help distract him enough to stuff a spoonful here and there.  Oh, yeah... and the TV helps too.  (otherwise he would probably be turning his head away from me.)

Now for the Isaac-isms....

Mr. Attitude.

The Dealer.

Busy-body.

Big flirt....

And here is my proof that he really is laughing despite his hardware....

http://youtu.be/zvZkZMsUkWg

One more week until he gets his fixator off!  We can't wait!

A few outings

We've been home for almost two weeks now and luckily things have been pretty low key.  We did have one little hiccup this week when Isaac pulled something off of his wheelchair and it banged his fixator, moved a screw and caused his pin site to bleed a little more.  We were a little concerned it could have moved the pin alignment in his pelvis and so was his doctor.  Thursday we had his orthopedic surgeon check it out.  Luckily the x-ray showed that his pins were where they should be internally, but he had loosened all the screws.  We got that fixed, had a renal ultrasound which went well and headed home.

The weather has been awesome so we went to the park the other day.  Isaac loved barking at the dogs

and Gabe had lots of races around the park in his "Harley" (aka his big wheel).

We have about two weeks left of having this fixator on Isaac.  I am trying not to have a countdown as I think it will just make the time go slower, but I really can't wait to have it off.  The hardest part about it, is not being able to cuddle him tight.  The first thing I am going to do is pick him up and hold him tight!

Until then, we will sit back, enjoy the quieter days we've been having at home and look forward.

New ride

Things have been going well at home!  Isaac is like himself, playful, assertive and funny. Things are pretty normal except we have pretty much stayed inside our house.  It is pretty awkward to carry him with his fixator sticking out.  Carrying him a little bit from the family room to his bedroom is ok, but it is so awkward and he's getting heavier that I would be afraid of hurting him or myself if I tried to carry him around out in public. I really don't need to go out too much except for taking and picking up Gabe from preschool.  My mom was here last week so I kept Isaac at home with her when I took Gabe, but I wasn't sure what I would do when I don't have help.  I told Isaac's PT and Speech therapist which happens to be his Aunt Maggie about our predicament.  They went to their school and found a great little wheelchair for us to borrow!

He and Gabe both love it!  As you can see, Gabe and Isaac were having wheelchair races around the house yesterday during the Buckeyes game!

It actually fits Gabe perfectly and he has had a lot of fun wheeling around the house in it too.

Even though the chair is big for Isaac, it is wide enough for his fixators to fit in the seat and he can reach the wheels with his hands.  The wheels move really easily and he was even able to wheel himself across the living room.  He wheeled up to the TV last night!  

Oh and the bonus.... the front little wheels light up!

Here is a clip of Isaac and Gabe racing around.  It was Isaac's first time in the chair and he was SO excited!

http://www.youtube.com/watch?v=Og9_DPaIaFA&feature=youtu.be

I think this is the first of many races!

Stowaways

It appears that we had some stowaways from the Cincinnati Zoo ....

A Giraffe

and

A Bengal Tiger!

And they are wishing you a Happy Halloween!

And..... you, yeah you!  Don't tell the zoo where we are!