post surgery update

Surgery ended around 7:30 last night and we got to see him in the PICU around 9:30.  He was still sleeping and he slept throughout most of the night.  They kept him on a continuous pump of pain meds until this morning and now it is intermittent along with a pump, a button which we can push when he needs meds.  

Post Op in the PICU

He has been in and out of sleep all day and said a few words.  I can tell he has some pain, but he is overall doing really well and so tough.  He has only asked me to push the pain button twice today.  He watched a little bit of Star Wars Lego movie, then fell asleep. 

Watching a movie today.

It's hard to see him suffering, but he is handling everything really well.  Earlier, I asked if I could do anything for him and he said to keep my hand on his head.  He has always been my little, cuddle bug.

The urology team came by and are happy with how he is progressing.  It will take awhile until his stomach wakes up and there is still so much going on with his belly they don't want him eating or drinking though his nurse did convince the doctors to let him have some ice chips. If he wants he can have one ice chip per hour.  But so far, he hasn't wanted anything.  

Thanks again for all your thoughts and prayers.  Right now, we keep praying for continued healing and good pain management.  

The tide has come

Good afternoon warriors,

Dan stayed over with Isaac last night and Isaac got some good sleep.  Gabe, Micah and I headed over around 6:00 and Isaac was still sleeping when we got there. 

Isaac was such a brave boy this morning. He was nervous about surgery but went in with his game face on. His brother Gabe sent him text meme’s (which are funny picture clips) which kept his mind off of things in pre op prep. I was able to go back with him into the OR while they put him to sleep. He giggled at the images and then quickly fell asleep. 

Dan gave him a great pep talk which helped calm his nerves and Gabe was a great support. 

Everything began around 7:30. We will receive calls every two hours or so from his nurse. The actual surgery began around 9:00 after they had intubated him and placed a picc line.

Surgery days are hard.  There is a range of emotions.  You don't want your child to go through surgery, and you wish you could take his place.  Now that he is older and I can see the fear in his eyes, breaks my heart.  He understands what is happening and that is hard.  But on the other hand, we have great hope for the outcome that this surgery will bring.  We know with this change for him, his life can be easier.  It's all a part of his birth defect; making decisions about his medical health to help him have the best quality of life and make things work for him.

Surgery does not define him, nor us as his parents, but it does impact it.  

I was sitting thinking about this journey .  An ocean wave comes to mind.  I feel like God is the ocean, controlling the tide as it rolls in and out.  Its fluid and changing and we can not control it.  But, we are all given a boat to steer on our journey in the ocean.  No boat is the same, no ride is the same.  We are given the keys to our children's boats until they are fully ready to drive their own boat.  We still aren't in control, but we can use the knowledge in our minds and love in our hearts to be our compasses. The boats we are on ebb and flow as the tide rolls in and out.  Sometimes we need extra oars to get through the rough tides. 

I had to hand over my steering today to Dr. Gearhart.  I want to be in control and know exactly what is going on, but we all know that just is not possible.  I have to hand him over and trust that Dr. G and his team will ride this big wave and control the boat so that Isaac can eventually take over the wheel with more ease.  

And, I also need to hand out oars.  And that is where you all come in.  All you prayer warriors.  All of you out there thinking of Isaac.  Each time you pray, or hope or send a wish for Isaac, you are taking a oar and helping push his boat along.  You are riding this tide with him.  All because of love.    

This surgery is all a part of his life, a tide in his journey.  Thank you for filling his boat with love.  

Baltimore

Wow, as I look through the blog, I see that it has been 5 years since I have written on here.  It's not that I have not wanted to, but life has been busy and in many ways, Isaac's life has been one of a typical kid.  He has his own activities he is involved in and his medical needs have been minimal.  Life is good!  Isaac just finished first grade and has grown and matured in so many ways this year.

If you know us or have followed since that time, you know that the resurgence of my writing on here comes as we enter a journey of surgery.  It has been 6.5 years since Isaac has had major surgery.  And tomorrow, he faces a big urological surgery.

We knew that at some point this would be a surgery would be one that would likely be important for him as he grows physically and emotionally.  It will ultimately give him more independence and he has expressed the importance of that for himself, as well as we have observed in him.

Making medical decisions does not come lightly for us, so we thought long and hard and prayed about the best place to do this surgery for him. We decided on coming to Johns Hopkins Hospital in Baltimore, MD.  We have had so much support from family and friends; everyone has given support in their own way and we couldn't be more grateful.  Friends have showered Isaac with love by throwing a send off neighborhood party, teachers, friends and family and sent him activities and games to play while we are here, my parents have babysat for us so that we could prepare for this big trip (and get our house ready, because in the midst of being in Baltimore we are having our basement finished)  and Dan's parents are coming out with us and renting a home so we can have all our children together as Isaac recovers, to which we are so thankful that we can stay together and Isaac can recover as "normally" as possible.  Please know we are blessed and thankful for everyone's love and support and selfless giving.  And that without a doubt this includes all of the prayers and positive energy that everyone is sending.  If you've read any of my writings in the past, you know that I 100% believe in the power of God's love through prayer and positive thinking.  Isaac has always had such a wonderful team of warriors carrying him through these hard times.  THANK YOU ALL!

So, for all the updates, we drove out to Baltimore with Gabe, Isaac and baby Micah yesterday.  The girls are staying with Grammie and Papa and they will drive out Saturday when the get keys to the house.  We were admitted today to do bowel prep for Isaac.  He has been such a trooper.  The best part of his day is playing Xbox all afternoon.  He, dad and Gabe are all working on conquering Spidawick! The worst part he will hands down say is the NG tube which is getting the "Go Lytely" medicine to clean out his bowels.

Surgery will be early and they will likely take him down to surgery prep at 7:00 am.

Thank you again for your support and love and prayers.  Here are so pictures from our trip out, our night last night at the Children's House and some hospital time today.

So many wonderful gifts for all the kids!  They will not be bored!

This hospital is huge!

Game time last night at the children's house.

The children's house is so fun!

Isaac is soaking up some xbox time in the hospital.  Micah is cheering him on. (or maybe just trying to chew the controller!)

The girls are having a blast with Grammie and Papa.

Moving

When we moved into our home 5 years ago, I imagined Gabe growing up, playing ball in the backyard and riding bikes down the beautiful tree-lined streets.  Having taught in that same district, I knew the schools and was excited to send my children there.  I envisioned bringing home another baby or 2 to that house.  Our family would grow and thrive there.

Almost two years after we moved in, Isaac was born.  I knew he may not walk, but time would tell what he would do. I imagined that he would push his way up the stairs and it would work.  Time went on, and I saw, that while amazingly, Isaac would crawl down the stairs (with supervision), it was not a safe option.  And when he wanted to get to his room, the stairs were an obstacle, and only with the help of an adult, could he get to his room.  I realized, it wasn't fair.  He needed access to his room just as easily as Gabe could get there.  I realized, I lived in fear every nap time, because I was afraid he would crawl to the stairs and become a little too brave.  I knew we needed to move, even though I had fears of that change.  I knew, my dreams had to change.

And they did.  My dreams that we would find a house that worked for our whole family happened.  We found a wonderful, 1 story home, in a great neighborhood, 25 minutes from our old house.  One week ago, we moved from that beloved house and our dear neighbors.  Our neighbors saw Gabe grow into a little boy, they came to my aide 2 hours away when all within 48 hours Isaac was born, my grandmother died and Isaac had major surgery.  They have played with our children, they have seen the worst and the best of us.  They have been our friends. And leaving them was hard.

But amazing things have happened since we have moved...
Gabe and Isaac get to go to school together and ride the same bus.

Gabe has played non stop outside with wonderful new friends, and we have met many great families that we can tell will also be great friends to us.

Hila has started army crawling.

And Isaac has been able to get up in the morning, crawl out of bed and come out to the kitchen.  All by himself.  Just writing that brings tears to my eyes.

So tonight, I sit here with great gratitude for the memories that our old house holds, and the neighbors that will remain our lifelong friends.

Making the move was hard, but it also has come with great blessings.   I look forward to memories that will be made in our new accessible home and the new friends that we have met and will meet.

"Miracles start to happen when you give as much to your dreams as you do your fears." ~ unknown

Isaac's realization: I can't walk mama

Isaac is becoming strong; like strong as in, he will do a push-up into a tripod with his bum in the air strong.  He now climbs in and out of his bed.  And he doesn't crawl up on his belly.  It's all pushing his body up, bum first.  So needless to say, when we hold him and he wants to get away, it's a true struggle.  Physically, he is really toughening up.  Not that he wasn't before, but you can now, really see his little muscles in his arms.

He reminded me yesterday, that he is also still our tough guy in his views of his world.  And I have to admit, I am so grateful for his tough, no-nonsense perspective.  I'll share with you this little guy's perspective.



Yesterday, Isaac, Gabe, Hila and I were all playing in the boys room.  Gabe was reading, Hila was chewing and Isaac was climbing into his bed.  I'm not sure what sparked this conversation, but here it is...

Isaac-  "I can't walk mama...  I just pretend walk." (Which he stated very matter of factly).

Me- (Trying to think quickly and also trying to not over-do my answer). "Yes, but you do so many things good.  Like wheel, crawl, scoot, and talk."

Isaac- "yep.  I walk in my big wheels.  I stand too.. See"... (as he proceeds to push his bum in the air with his hands).


I hope that he always has this matter of fact view on life.  I hope that he sees that just because he doesn't do things like most of us, it doesn't mean he can't do them.  He just does them different or with different tools.  And I have even greater hope that the world sees that too.

Why I write

With recent "identity theft" from our friend's blog, I have been afraid to share this blog.  The last thing I want is for my writing to affect my child in a negative way.  From the beginning, the thoughts of protecting Isaac's privacy and rights have always lingered in the back of my mind.  I don't want to put him or any of my children in harms way.  I am usually trusting of the world and see it as a loving place, but then things happen, and I am reminded that I must not be naive to the dangers of the world and internet world.

Sadly, it's out there.  People do things that harm others.  It's not cool and it's downright scary.  That's why I have contemplated, "what is the best thing to do."  Do I privatize my blog and only have people I know, that I can send and email telling them that they can follow our story and continue to be prayer warriors and supporters of our little tough guy?  (Yes!  and a thank you is not enough to express my gratitude for my faithful followers). But what about the aunt that emailed me because her sister was having a baby with OEIS and wanted advice?  What about the mother with an older child that had never met another family with OEIS? (Who by the way had the same surgeon operating on our child!) And, what about the mother that has found out her child has these random set of birth defects.  The mother that has little hope, because she has been told her child could be in the hospital for months or a year.  Her child may never walk, be able to eat by mouth or urinate in a normal way?  What about that mother, who has been told she should abort her beloved child she has been carrying for 5 months.  She is lost and sad and confused.  She loves her child, but she has no face to give her hope.  She can only imagine sadness in her child.  How could she give life to a child that only faces adversity?

Let me tell you why.....because there is something much bigger in life than "being normal".  Isaac's story is about hope, but it is mostly about love.

Does this look like the face of a child without hope or joy in his life?  (Hardly, right?)  And let me tell you..... the doctors were right about some things and wrong about others; but the thing they couldn't tell me was this..... that he is happy.  That he has a cackle laugh that is contagious.  That he can charm you with his quick wit, yes, even at 2.  That he is bold and knows exactly what he wants.  That he is ornery as heck and enjoys it.  That he will tell you everyday you pick him up from school, "mommy, I missed you."  The doctors just can't predict how much love you will have for your child, no matter how long your hospital stay is.  No matter how many birth defects your child has and no matter how rare and unknown his health will be.

I remember being that mother.  Pregnant with her beloved child, without hope.  I was the mother scouring the internet at 2:00 am with my pregnant belly, moving through the motions and searching for an answer.  And you know what?  I found the answer, Isaac's diagnosis, even before the doctors could figure it out.  I found some blogs about children with OEIS.  And I saw their precious faces, their smiles of joy, and their families, that you could tell only had love for their child.  And it gave me exactly what I needed..... hope.  Hope that while I know it may not be an easy road, that our lives were not destined for isolation and grief.

There was a beautiful child waiting for us to welcome him and give him the extra love and care that he needed.  The internet can be a very scary place.  I don't even like to imagine the harm it can bring.  But it can also be a place of finding hope.  It can be a place to share stories and messages, so that we can make better decisions.  And so, with thought, prayer and perspective, I am keeping Isaac's blog public.  Because if I hide his inspiration to the world, then I am not allowing his disability to help others in need.  If I know this is how I can help share his story to help others, then I know his suffering will always give God glory.

So, with all that being said, please respect our blog, my children and all the families out there that put their lives out there for all to see.  It's not easy to share your life with the world, but sometimes, we know that sharing can help others.  Don't take that away.  Please respect all and take nothing from others stories, except hope, prayer and respect.

This time of year

The beginning of April will likely always mark a time of inner reflection for me.  The rainy skies dampen the earth and remind me of the tears that filled my pillow for the days and weeks that followed April 5, 2011.... The day of our revealing ultrasound.  That day, in just a single moment, in the words of a short phrase, my world forever changed.

While it is painful to revisit those memories, it is important.  It is through that pain of my journey that I am able to peel off the layers of ugly about myself.... judgement, prejudice, ignorance, anger, guilt, self-centeredness, fear....

Through time, tears, prayer, self-reflection, support of loved ones; I realized that God had a different plan than mine.  It didn't seem fair to me and I didn't understand why I couldn't just have my plan.  Hadn't I been obedient enough?  What had I done to deserve this?  I did not want His plan.  I wanted to run.  I wanted to run far from His plan.

But something stopped me from running.  It was larger than hope, larger than my faith in God.  No matter what I did to try to run, I couldn't.  This force was much greater than anything.

It was Love.  It was the love from everyone around us.  It was love from my husband. It was the love I knew of being a mother of Gabriel.   It was love for this baby boy within me.  I had loved him from the moment I felt we should have another child.  This child, Isaac Michael, was meant to be and I loved him.  I knew that I had to embrace his journey and follow God's will for him.  Isaacs's plan was no longer in my hands.... but now I know, it never was in my hands.

I have read countless blogs and books of other parents' journeys.... down syndrome, dwarfism, autism, spina bifida,  etc.  I can relate to each of them in some way.  Sometimes it is the thoughts of fear that we have as parents of children with special needs.  But most of the time, it is just about love.

I hope that the love from this blog, and other blogs, helps share with the world, that different is beautiful.  That weaknesses from one person, can help bring out the strengths in another and that acceptance of others, really means acceptance of ourselves.