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.

allow the miracle

Dear Friends,

18 months ago we heard that most of our unborn child's body systems had something wrong with them.  Things would not be in the correct place or function how it should.  We prayed.  We begged for prayers. We believed.  We hoped for a miracle.

June 16th a miracle occurred.  Isaac was born alive and strong.

June 18th, he endured his first surgery.  He did well and again, we felt God's hands protecting our little boy.  Another miracle.

August 24th at 2 months old, Isaac had his second surgery.  He had a 2 pound fluid filled sac filling with spinal fluid from his cord was removed from his small 10 pound body.  He was eating within an hour after this major surgery and home after 9 days.  Another miracle.

Our little boy is now 15 months old.  We were told he may not develop like most children.  He has a vocabulary of 25 words, can toss the football, sits on his own, drinks from a straw, loves pizza, potato chips and American cheese.  He gives us kisses and claps in delight.....

God is working.  We are blessed.

Tomorrow we will leave for the hospital at 6 am.  Isaac will have a small procedure to have a PICC line placed.  This will provide him with nourishment, fluids and medicine while he is in surgery and recovering.

Tuesday he will have his big surgery at 7:30 am.  It is expected to be at least 12 hours long. Four surgeons will be involved; 2 urologists, 1 colorectal surgeon, and 1 orthopedic surgeon.  Simply put, they will be breaking his pelvic bones because they are currently splayed like a frog.  They need to break them in order to rotate his bladder and bowels into his body.  It is obviously much more complicated than I explained, but to be quite honest, I am not sure I can even explain it in a way that makes much sense.

Throughout our journey we have had so many people tell us that they are praying for our sweet little Isaac.  We are humbled to know that you all sending love to our special boy.  We truly could not have been strong for Isaac, without each of your support.  I have great comfort in knowing that when I am not tired and down, someone, somewhere is praying for Isaac and I am amazed.

I want Isaac to know that he is perfect and I love him exactly how he is.  He doesn't need to change one bit and in my eyes, he is beautiful and perfect.  I also want him to know, I believe in miracles.  I believe that God can heal his body and work through his surgeons to help make his earthly body more functional.  I believe that God can do anything.  I just need to allow the miracle.

So today, if you have a moment, would you join me in saying a prayer for healing for Isaac, wisdom and skill for his surgeons and belief.  Please believe with me that with God, anything is possible. Please visualize Isaac's body healthy, whole and functioning the best that it can.  I even like to picture his little legs moving, jumping and walking.

Please join us.

allow the miracle. 

Preparing

In one week we will be in the hospital preparing for Isaac's big surgery.  He has had two big surgeries already and this one could be even bigger, or should I say longer. It is expected to be at least 10-12 hours long.   His surgery is scheduled for next Tuesday, Oct. 9th.  This is something that I have not been looking forward to since birth, however I am looking forward to positive outcomes for Isaac as it will hopefully provide him more stability and be overall better for his body.  He will have a very long recovery, but I have Faith that God will comfort my little man in His loving arms when I can not.  

So many families travel all over the country or even world to find the hospital that can best help their baby.  While we do have to travel 2 hours to reach the hospital where his surgery and recovery will be, we are so fortunate we have family that so lovingly takes us in and lets us stay with them.  It really makes such a difference in our stay.  We are also so blessed that each one of our parents has volunteered a week of vacation from work to babysit for our oldest son, Gabe so that I can be with Isaac at the hospital each day.  I can tell you that Gabe already knows what weeks who will be watching him and he is excited to have special time with each grandparent.  This gives me more comfort than I can say just knowing that Gabe is in good hands and with people that love him.  

So, we have been preparing.  I have been cleaning our house (I hate to come home to a messy house!), packing, redoing closets (because when we return the weather will be cooler for sure!), and gathering toys, books, etc to help make Isaac's hospital stay as comfortable as possible. I am trying to not get too hyper and stay as relaxed as I can.  I am trying to enjoy these last weeks before surgery with boys doing fun fall things!

Here are some of our highlights from the last couple weeks....

Football Saturdays and watching The Ohio State Buckeyes play!

Going apple picking

Fun at the farm

And having cozy family time each night.