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!

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.

He Will Laugh

Isaac Michael

Isaac: meaning, He will laugh

Isaac's laugh  (click this link or video below)

That's what it's all about....

Peek-a-boo, wagon rides and healing

Isaac has made many great strides in the past 5 days.  Each day his little personality comes back more and more.  He has been such a flirt with his nurses giving them little half, pierced lipped grins, with little twinkling eyes that have ornery written all over them.  A week ago he looked at everyone that walked into his room with two darting eyes and cried when anyone even came close to touching him.  This week, he points to the TV so his guests can see what he's watching.

He has been playing with his toys in bed and his new favorite game he initiates is peek-a-boo!  

Saturday we took a wagon ride around the main hall of the hospital.  He looked around at everything and really enjoyed it.  Who wouldn't enjoy cozy ride like that?

On Thursday he was allowed to begin eating.  He needs lots of nourishment to heal from surgery.  He has slowly been eating more.  He has recently become a more picky eater so our biggest challenge and goal the past few days has been making sure he is getting enough calories.   

(He does seem to enjoy the unlimited supply of chocolate pudding. )

He has been healing well and his incision is looking better every day.  His pain is almost non-existent.  He is no longer on continuous pain meds and today he went off IV fluids.  We are so happy that each day we see improvements in him.    

I have great confidence that God is hearing all of your amazing prayers and we certainly feel the love surrounding our little tough guy.

Five Fabulous Facts (about why today was great!)

Today was such a great day on so many levels!  Here's why...

1.  Isaac smiled!

2.  Isaac giggled!

3.  I got to hold Isaac!

4.  Isaac got to drink milk!

5.  Isaac turned 16 months old yesterday!

Today was really awesome.  We started the day by decorating his room with lovely Halloween decorations that Grammie and Gabe made.  Isaac loved reading books and lifting the flaps in his book.  He even giggled when we played peek-a-boo!  My day was complete within the first hour of seeing him with all these exciting things.

Just then, his urologist came in a cleared him to drink clear liquids today and told me I could hold him!  I have not held him or nursed in over a week.  This is the longest time I've not been able to hold or feed him.  I felt patient as I really didn't know what to expect so I set my bar high thinking it could be weeks.  When I heard this news today, I was over the moon!  It was definitely a little challenging to hold him  and breastfeeding him was creative, but so worth it.  He even fell asleep in my arms (well actually arm, since he was technically mainly on a pile of pillows and one arm.... but hey, I'll take it!) for a nice little morning nap.

He played with Gabe and Pap-Pap and let Papa get him to sleep tonight. He was not as leery of everyone coming in and he even smiled at his surgeon.

Your prayers and thoughts are helping.  Thank you :)

Helping Hearts

                           For each new morning with its light, For rest and shelter of the night
                      For health and food, for love and friends, For everything Thy goodness sends.
                                                                                                                     ~Ralph Waldo Emerson

Each day brings new joys and new challenges.

Today, I rejoiced in seeing Isaac's big brown eyes awake and aware.  I rejoiced when he reached his arms up to me and said, "mama."  I loved seeing his little hand point to the tv.  I loved how he wanted to smile, but he just wasn't quite ready.  It was as if he was saying, "mom, I've been through hell and back.  I am not ready to smile yet, but maybe, just maybe in a few days I will be ready to smile." Take your time buddy, but when you do, we will celebrate!

Today, my heart worked hard.  It was hard knowing that every time my little man closed his eyes to sleep and started to get comfortable he would wake up crying from some bladder spasm or pain.  Though I loved him reaching for my hand, I could see in his eyes the fear of  "don't let them do anything else to me."  It was challenging not being able to leave his side, not because I didn't want to be with him all day, but because sometimes I have to go to the bathroom, get a drink or much worse, go home for the night.  Leaving him today was the biggest challenge.  It is at those moments I have to have faith that the angels and his nurses will keep him comfortable.

Today, I rejoiced for friends.  Today, I received a package with a pile of cards in it.  I opened up each card as my eyes filled with tears.  I was overwhelmed.  My friend Crystal from high school who did our family photo shoot a few weeks ago orchestrated friends from my high school to send cards and gifts for our family.  They sent us hundreds of dollars, many prayers, and encouraging words.   Your generosity and love is truly a blessing to our family.  Your gifts will help make our days in the hospital much easier.  Thank you all for your helping hearts.

little peeks

Isaac has slowly started peeking his eyes and waking up.  It is nice to see his eyes, even if just for a little bit.

Yesterday he was still very swollen all over and puffy, but when we arrived today some of that swelling has gone done and he is slowly looking more like himself.  Thursday they took him off the drug  that was keeping his whole body paralyzed.  They don't want him to move much because of everything healing.  He is still intubated which means that he is still on the ventilator which is controlling his breathing.  (That is the tube that you see in his mouth in the picture below).  The tube in his nose is draining fluids from his stomach.  Yesterday (Friday), they slowly weaned him off some of the sedative drugs and we got to see some peeks of his little eyes.

He also had a visitor yesterday, his big brother!

Gabe did really well seeing Isaac.  We prepped him for what he would see.  Gabe seemed a little intimidated by all of the machines, but was fine with them once he knew what they did.   Gabe was also concerned and asked, "whats that thing on Isaac's belly?" (Isaac's big scar)  He was really quite sweet with Isaac and even wanted to hold his hand.  It was a very touching experience to see his tender love for his brother.  I think it was good for both of them.

When we got to the hospital today Isaac was more awake than yesterday and he also seemed to be in more pain. His eyes woke up more and he was definitely aware when Dan and I talked to him.  I could tell he was grimacing in pain.  Luckily, they have good medicines that can help ease some pain.  Once he is off of the ventilator, we will probably have a PCA pump which is a medicine pump that we can push when we see that he is in pain.  We were told by the pain doctors before surgery that this specific surgery is probably the most painful surgery that they do at this hospital.  I believe this is because of the cutting on his bones and all of the manipulation of many abdominal organs.  It was certainly hard to hear that, but also good to know in advance so that we could prepare ourselves.

This morning we read him some books and he looked at the pages and seemed aware.  He also watched a little bit of TV.

He is sleeping now.  His urologist stopped in recently.  Our plan for today is to see how Isaac is doing with trying to breath on his own and hopeful take him off the ventilator.  The doctors have been very slow with taking him off because he needs to be still and flat.  We are ok with taking things slowly, as we just want the best possible and most comfortable healing for him.

On a side note, here is a picture of Isaac from last Saturday in his Buckeye shirt as we watched football.  He actually really liked wearing the hat!

Quick update

Today was a very quiet day.  Isaac is still sedated and has the breathing tube in and stable.  He may get the breathing tube out tomorrow.  He is very swollen from surgery but that is to be expected.  We headed home for a nice dinner since isaac was comfortabe and there is not much we can do right now for him. My mother in law, Laura made a nice home cooked meal and we spent the evening playing with our other little man, Gabe.  We've missed him and having an evening with him was just what we needed tonight.  We hope to get back to the hospital early tomorrow and hopefully talk to his surgeon on morning rounds.

recovery

Isaac is out of surgery.  They finished surgery around 7 pm and he was we saw him in is room in the PICU (Pediatric Intensive Care Unit) around 8.  He is stable and sedated.  This was a very extensive surgery on his little body.  It was very complicated and there are many risks involved.  We continue to pray hard, especially in the next 48 hours as we learn how successful his surgery was.

We are so thankful for all of the prayers from everyone.  When people ask how they can help, prayer is truly what we need most.  Tonight we continue to ask all of our amazing prayer warriors to continue sending love for our little man as he still needs many prayers and positive thoughts.

                                     He is one tough little guy and we are very proud of him.

in surgery

Isaac is now in surgery.  Yesterday he did well getting his PICC line.  He did not enjoy being cooped up in his hospital room, not eating, and the bowel prep, but we made it through.

We headed to the OR prep room around 7 and went over things with his doctors.  He charmed the nurses and played with his little toy and he loved the ride in the bed down to the OR. In true Isaac style, he remarked and pointed to pictures on the walls as we rode down.  I think I even heard him woof a few times at Scooby Doo stickers that were on the wall.

                                                    yesterday before getting PICC line

Leaving him was probably the hardest part of the day for me.  I think in this case today, laughter was the best medicine for me.... Before they took Isaac from us they gave him a medicine to relax him so the separation would be easier on him.  I am so glad we had them give it to him.  He instantly started giggling and you could tell he was feeling pretty good from the medicine.  It was good medicine for Dan and I too, because we knew that he was in good spirits and unaware of what lie ahead of him.

        Having fun with brother Gabe yesterday.  Gabe's visit was the highlight of Isaac's day.


We got a call around 9:30 stating that the orthopedic doctor had begun the bone portion of the surgery.  It sounds like this part will take about an hour or two and then they will begin the urological and abdominal parts of the surgery.  He was stable and doing well when they began.

Our brave little man.  

Thank you to EVERYONE for the outpouring of love, prayers, support and well wishes for Isaac and our entire family.  We are amazed by the how many people are supporting us and lifting us up and we can feel it.  Thank you so much!  Knowing that so many people are lifting Isaac up in prayer gives us peace and comfort as we get get through today and the recovery road ahead.