Part 2- progress Monday afternoon

Well, in the midst of writing and not getting side tracked before publishing part one, Isaac took a great nap and when he woke up, he perked up.  Papa (John) had brought over Gabe, Hila and Mary and Isaac starting playing X-Box with Gabe.  Isaac starting talking more and even trash talking the X-Box.  This was a big boost in his spirits!

                                              

He has asked for goldfish crackers and pizza since the afternoon (which is the first he has mentioned food since before surgery).  Unfortunately, he can't eat yet, but we are seeing some signs that his bowels are waking up, so these are all steps in the right direction!

Tonight his good buddy Crosby FaceTimed him and it is the most vocal Isaac was all day!  He really enjoyed talking to him and had me turn back on the Xbox so he could show Crosby the Xbox game.  I am sure Isaac will be asking for to purchase "Wipeout" when we get home so he can actually play it with his friends.  

Tonight, we are watching Thor and he is resting.  It is a peaceful evening to an afternoon with lots of positives!

Part 1: Sunday & Monday morning update

We have had a couple of quiet days of slow and steady progress here for Isaac.  He is tolerating the pain really well.  He does have some pain and is pretty reluctant to hit his pain medication button, so when he does ask for it, we know he really needs it.  I've overheard his nurse from the weekend telling the nurse coming on duty that he is a tough little guy and pushes through the pain.

Most of the time he watches TV and is in and out of sleep.  The meds make him sleepy, but each day he seems to be awake a little more.  Today, Isaac just wants me to be near him and rub his head.  I can tell he seems a little more uncomfortable today, but overall, he really is doing well.

Yesterday he said he wanted to make legos with mommy. So of course we jumped at the chance.  We made a new Star Wars Ty-fighter (I'm sure I didn't spell that right- I may not be well versed in my star wars battle ships!).  He did great and even made it 30 minutes past his pain med dose so he could finish it.  I told him to smile for a picture when he finished his lego, and he gave me his best smile for the moment.  I sure do miss his big smile, but I know he will have it back soon.

Right now, we are working on his tummy healing, his bowels and stomach to wake up, and keeping his pain controlled.  The NG tube in his nose is sucking out stomach juices, so once his stomach wakes and starts taking away those stomach juices, then we can try clamping the NG tube and seeing how he does with some liquids.  We pray that happens soon.

The hospital is huge and Dan and Micah took a walk exploring yesterday while we built legos.  There is so much history in this hospital and he shared some very pretty pictures with me of the original building.  I'm hoping once Isaac is able to get out of bed, I can take him on a walk around.  He may find some of it interesting since he loves history (then again- he may just like the playroom and change of scenery!)  I feel like I am in a city within a city in the hospital.

The kids have been stopping by daily with Grammie and Papa to visit Isaac.  It is so helpful to have them close by.  I miss them, but the fact that I can see them a little bit each day makes the world of difference and having Isaac see them is a highlight of his day.  Micah has been with me the whole time since Dan is still in town and Isaac always asks to rub Micah's head when he sees him.

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.