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!

Home

Great news!  On Friday Isaac was discharged from the hospital!  We stayed at Dan's parents house over the weekend (Grammy and Papa's) just in case we needed to go back to the hospital the first couple of days.  It was nice to have a relaxing weekend and have Isaac with us!

Sunday we headed home in the car bed.  Isaac has an external fixator which is a metal bar contraption with three pins from the fixator in each hip/pelvis.  This doesn't fit in a car seat so he lays in a car bed to travel.  It is a little challenging to get him in and out, so he will stay at home most of the time until his fixators come off which will be Nov. 27th.

When we got home, right away Isaac was pointing to all his toys wanted to see them all!

Isaac is allowed to be held and sit up but his activities are limited.  He is still healing from surgery.  He has his fixator on still as mentioned above and also a drain in his bladder while it heals.  We have to be careful lifting and carrying him and he has limited places he can be.  We found two little seats that work pretty well.

He likes to play on his little kid sofa chair.  He is currently propped in front of the TV watching Baby Signing Time, drinking milk, eating goldfish and playing with his little kitchen toy.  I'd say the fixator isn't stopping him!

                                                     (Isaac with his Zoolander face)

We also found a little doggy chair that Dan put a belt through to sit at the table at since he doesn't fit in a high chair.  We realized he was so low to the table so we pulled up Gabe's little card table.  The boys have been feeling pretty big sitting solo together!  I have a feeling when the fixators come off it might be hard to have them come back to our kitchen table.

Gabe has been such a sport.  He was excited when he got home to find a new bed in his room!  He graduated from his toddler bed to a big boy single bed!  I guess that happens when you are "three, almost four!"  He was excited to go back to preschool today.  He has been playing trains and basketball and has been asking already about seeing his friends that he's missed.

It's nice to see my boys playing together again!

Hopes and Dreams

Matthew 17:20, He replied, "Because you have so little faith.  I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move.  Nothing will be impossible for you."

As a parent, I believe we are always striving for the "best" for our children.  The best looks different for different people and different families.  The best even looks different for each child within a family.  We all want "the best".

So ever since I heard of Isaac's spinal problem and learned that he would most likely not walk, I continued to dream of the best.  What would be the best solution?  A wheelchair wouldn't cut it.  He would walk.

Well, knowing that Isaac's legs don't move and he doesn't cry when he gets shots in them, I am pretty sure I could confidently say, he won't walk.  Medically, it would be a very unlikely happening.  Some may say impossible.

But, as impossible as it appears, and as crazy as it seems, I believe that one day, yes, one day, he will walk.

I have done lots of research as I am sure most parents do when they are searching for the best.  I have read about stem cell research and awesome new devices like the exobionics exoskeleton. http://eksobionics.com/  or the rewalk http://rewalk.com/

Recent Noble Peace Prize winners have amazing research in adult stem cell advances  http://www.cnn.com/2012/10/08/world/europe/sweden-nobel-prize-medicine/index.html  Good things are happening.  There are very smart people out there doing really smart things.

We are very fortunate to have some of the best doctors in the world for our son.  We are blessed that not only are they pretty darn smart and good at what they do, but they are also very understanding and hopeful.  It's not everyday you find that.  I remember even before Isaac was born we spoke with one of his doctors.  After telling us about Isaac's challenges, he reminded us that this is now. In 10, 15, 20 years, technology will change.  We can't predict what his options will be then.

Tonight, I was talking with Isaac's neurosurgeon and I asked him what he could tell me about non-embryonic stem cell treatment for kids with spina bifida.  While there are stem cell treatments available for children with spina bifida in other countries, there is not a lot of regulation and the results are minimal.  But, that is today.  He shared  information about how doctors and researchers are finding our more about how our own stem cells can work to rebuild organs and tissue.  Despite the severity of Isaac's defect, he gave hope that Isaac could reap benefits from these advances in his lifetime.

Tonight, I know that I am at peace with Isaac's wheelchair.  He will get around just fine with it and he will be awesome.  Whether he uses a chair or his legs or a robotic leg mover, the world is at his fingertips.  But I also know that the world is changing so rapidly and many people are working hard to find ways to help everyone live a full life and achieve dreams they never thought possible.

Tonight, I am reminded of the mustard seed and filled with hope.

                                  There is no dream too big and no dreamer too small.