Hello from Isaac

I have to say, I have not been very good at updating Isaac's blog lately.   He has been doing well.  He is definitely growing and changing so much.  He is a very independent little guy these days and is embracing the world of being 2 years old.

He has been going to school 2 mornings a week and it has been so good for him.  He really loves it.  He goes to the school that his Aunt Gigi is a speech pathologist at and everyone has been so great.  He has had many opportunities likes riding a hand bike, standing in a mobile stander and hanging on a trapeze!

He absolutely loves his mobile stander!  This picture was taken his first time in it.  This is when he realized that he could stand..... and move!

He is talking a lot these days.  We are often charmed by his sweet words, and then moments later, wondering where our sweet boy went as he demands what he wants and boldly tells us no.... the life of a two year old.

Some of his favorite phrases:
As we go into school : "Hi Fishies!  (as we roll by the fish tank).  I want to say his to my Aunt Gigi".

Even when I am standing right by him: "where's my mommy?"

When he's feeling lazy: "take me right there."

When he sees something cute:"awww.  I want it."

When he doesn't like the situation he's in: "I want to go to nap in my bed."

That's all for now.  Happy Thanksgiving week everyone!

unexpected surgery

Last week we went to Cincinnati for Isaac's 6 month follow ups with his urologist and colorectal doctor.  Both appointments went pretty well, except we did learn that Isaac has a small hernia that needs to be repaired.  His urologist is actually moving to Morgan Stanley Children's Hospital in NYC and his last day is October 19th in Cincinnati.  Luckily, he was willing to squeeze Isaac into his schedule.  This means that Isaac will have surgery on Monday (the 14th).

It should be a pretty small surgery and last about 45 minutes.  We are not sure yet if he will stay overnight, but most likely he will stay over night just to be sure he recovers well.  This surgery was definitely unexpected, but we are so thankful that his urologist is able to operate on him before he moves.

Which leads me to the next thought.  We are pretty bummed that Isaac's urologist is moving.  He really is very knowledgable and passionate about helping children with OEIS.  He has a great opportunity in NYC and willing to continue to care for Isaac in any way that works best for us.  We are hoping to have a urologist either in Cincinnati or Columbus just to be sure we have someone for little things that may come up, but otherwise we plan to continue Isaac's urological care in NYC with Dr. Alam.  He has done such a wonderful job caring for and operating on Isaac and we trust Isaac in his care.  It is not ideal to travel for medical care, but we know this is best.  Many families travel all over for all their child's medical needs and we feel so blessed that we have really been close to great doctors and haven't had to travel more than 2 hours until now.

On another note, Isaac started school in early September and he is loving it!  He has had no trouble at all when I leave him.  He usually just goes to playing and boldly says, "bye Mom!"  He has gotten to use a stander and even jump on a trampoline!

I want to walk mommy

"I want to walk mommy."  5 little words.  They seem so simple, but when you put them together they are so powerful.  When your child is 27 months old and is paralyzed, these words are very powerful and heartbreaking.

I knew that one day, Isaac would notice something about walking.  I wasn't sure how he would interpret it, but I knew he would.  As a mother with a child with a disability, I don't think there is really any way to prepare or rehearse for these questions.  I do not sit and ponder what I will say to him, I just let my heart answer, and that is what happened the other day; the first time Isaac asked me one of the "tough" questions.

We were getting ready to drop Gabe off at school and I asked Isaac if he wanted the stroller or wheels.  He didn't respond with his usual, "I wants my wheels."  His respond was plain as day."I want to walk mommy."

I want to walk.  

It hit me like a ton of bricks and in an instant my mind flooded with responses.  For a brief moment I thought I might break down into a flood of tears, but something stopped me.  An answer quickly came to me and I strongly replied, "You will someday baby.  One day, you will."  I am certain the Holy Spirit took over my words at that moment and helped guide me to say what I needed to believe and what he needed to hear because when I really think about what Isaac said, it breaks my heart knowing that right now, it's not possible.

You see, ever since Isaac was a baby and I knew in my heart and mind, that he would need a wheelchair, but I also had this fire in me.  It was a strong belief that I knew that Isaac would walk someday.  I knew it might not be for awhile, but it would happen.  I believe in God's healing miracles.  He could heal Isaac at any moment if that is His will.  I do also believe that He will guide modern medicine to find ways to help those with paralysis.  But somehow over the past year, I have somehow suppressed these strong feelings and allowed acceptance into my heart.  I don't think it has been a bad thing at all to allow acceptance.   In fact it has been a gift. This was a true acceptance of his abilities to wheel to crawl, and it was also an acceptance that he may never walk.  It gave me peace that I now know his life will be fulfilling whether he walks or not.  He had already proven that he has a lot more going on that will get him far in life whether he walks or not.  For example, this kid has a killer personality and amazes me with the words that come out of his mouth.  He charms people but he also knows exactly what he wants and is not afraid to tell anyone.  He is compassionate and loving and so cuddly.  His confidence and love for life is what will bring him success.  His trust in God and love of people will move mountains.  So this acceptance of a wheelchair was very important for me.  Allowing acceptance has been an integral part of my journey.

But now, I am reminded, of the fire inside me.  The prayerful days for miracles and the true belief that anything is possible with God, must return to my heart.  Isaac did not say, Why can't I walk.  He said, I want to walk.  Isaac does not see that he can't do it.  He just knows that he wants to.  And I will add, this child is determine to have exactly what he wants.

So today, I step forward in trusting God's plan.  I do believe that each one of us has a special plan to help the world become a better, more loving place.  I have witnessed God's love so much through others because of Isaac.  Now I know it is time, to listen to the Holy Spirit and help make a difference, so that when God is ready to help Isaac walk, we will be ready.

I now have the go ahead from Isaac.... He is ready.  He wants to walk and I know, someday he will!

That was fast

Earlier today, I posted about the new Guinness commercial, showing a group of grown men playing wheelchair basketball.  After an intense game, all the men, except one get up from their wheelchairs and they all proceed to hang out at a bar.  It shows the compassion of a group of friends to be there for their buddy, who just so happens to be in a wheelchair.  Instead of excluding him, they join him.

I love it.  I love the message and earlier today, I wrote that I can only hope that my boys learn a lesson from this commercial.  It is incredible how quickly our hopes turn to reality sometimes.

Tonight, Dan was working late, so the boys and I had a date night at Skyline for dinner.  They love Skyline.  It's super kid friendly, Isaac loves the hot dogs and Gabe enjoys watching ESPN while he eats.  Each dish comes with heaping piles of cheese.  I mean who doesn't love cheese.  All in all, it's a win win for everyone.

While we were waiting for our food, Gabe exclaims, "Look!  They are playing wheelchair basketball!" I looked over at the TV and saw that the TV across the room was playing that commercial.  It was the first time that Gabe had seen the commercial.

It amazed me how quickly Gabe noticed and also how excited he was about it.  I could tell he was genuinely excited about seeing guys play wheelchair basketball.  He proceeded to comment how he thought Braxton Miller (one of his favorite OSU football players) used to play wheelchair basketball.  (Which I am pretty sure he didn't).  But I guess my point is that I felt so good knowing that Gabe has already learned a great lesson in life that takes adults years sometimes to figure out.   We are all here as ourselves.  We do things how we do things and that's that.  Some of us walk, some use wheelchairs, but we can all play.  

We had to immediately rewatch the commercial on youtube on my phone.  Isaac was very interested and replied with " they play basketball.  I want my wheels."  To him, he just wanted to join.  To that I say, "Yes son.  Please join them.  Let your brother join and everyone else join you too.  Let everyone play and be friends."

Watch this kids

After seeing some posts on facebook about a new Guinness Beer commercial, I became curious and decided to check it out for myself....

http://www.huffingtonpost.com/2013/09/05/guinness-wheelchair-basketball-commercial_n_3874732.html


I didn't expect to be in tears at watching a beer commercial, but I was wrong.  It has such a great message and one that I can only hope that my children will one day learn a great lesson from.

Lots of appintments and prepping for school

I have had this post sitting in my blogger account, waiting to be published because I wanted to add photos to it; however I have a new computer so I am learning how to work the photo system with it and really need to take a class on it...So here is a post that is a bit late and still photoless.


We have been enjoying this summer and it is hard to believe that September is truly just around the corner.  More than half of the weekends this summer were visiting family or some kind of family event, which I do love.  It has been busy, but so fun.  We are winding down the summer, and prepping for school.

Isaac has received physical therapy in our home twice a month since he was a baby.  Our help me grow therapist has been wonderful and we are so grateful for the progress she has helped him with.  Last spring we could choose to continue to have the PT come to our house twice a month or we could choose for Isaac to go to "toddler school" two mornings a week during the school year.  Next year when Isaac is three he will go to preschool 4 mornings a week so we felt like going two mornings this year would be a good transition for him.  He will receive PT weekly in school and he will also benefit from peer interaction and other fun school activities which will aid in his development.  His first day is two weeks from today.

I am honestly not nervous about Isaac going to school.  I think it will be really good for him.  He will be in a classroom with typical children and other children with special needs.  The needs vary, and that's good.  I hope that this helps foster our goal as a parents that our children know that each one of us is unique and special.  Our abilities and strengths are different and that's whats so cool about getting to know others.

I am nervous about driving him to this center.  It is downtown from our house and about 30 minutes away.  I am just praying that the downtown crazy drivers are easy on me as I cautiously work on getting my little boy to school during rush hour!

Gabriel starts his second year of preschool in one week!  It is his last year of preschool before kindergarten.  He is ready to go back.  He really enjoyed school last year and loves being around peers.  He and I will have special time on Mondays when Isaac is at school and I am really looking forward to this.  I have lots of ideas for special things we can do like visit the library, Franklin Park Conservatory, COSI and other things that I usually don't do with the kids because they are downtown (can you tell I don't really love to drive downtown!)

This week is a bit crazy.  Isaac has a doctors appointment 4 out of 5 days this week.  Nothing too major; eyes, teeth, GI, ortho and his last 2 year vaccine.  On Wednesday we do visit GI and this is the specialty that focuses on his gastrointestinal health.  He has been seeing this doctor for about 6 months because he has had slow weight gain in the past year.  I do get a bit nervous going because I know if he doesn't grow, a feeding tube could be in his future.  It is not that Isaac doesn't eat anything, but I believe it is a case where he is a picky toddler AND children with his condition have difficultly gaining because of their unique intestinal anatomy.  He does not have as much colon as we do and therefore he doesn't absorb as many nutrients.  His intestinal tract may also not move food as quickly either which means he does not get as hungry.  I am praying that he has at least gained some weight!

A peek at an early Christmas present

We have some exciting news and the boys get a sneak peek at special gift we will all meet in December....

Brother or Sister?

CCHMC website

Last month we traveled to Cincinnati to share his story with others at the hospital.  Before he was born we searched for the best place for Isaac to receive his surgeries and care and after visiting Cincinnati Children's Hospital we had felt comfort and peace knowing that is where we needed to take him.  We were fortunate to be able to share his story.  This month his story is featured on their homepage!

If you would like to hear his story please follow this link:

http://www.cincinnatichildrens.org/default/

Passh Pad Passh Pad

Isaac loves the splash pad as does his older brother Gabe.  We have been frequenting all the splash pads around our area.  We knew Isaac loved the water based on his experience with baths, but we weren't sure how he would do with fountains splashing in his face.

Well, he LOVED it!  The first time he was in, he rolled all around, going straight through the water.  He would even look down as the fountain then exploded up into his face.... he didn't mind one bit.  He would proceed to the next fountain only to get splashed again.

Every time we mention the splash pad he immediately exclaims, "passh pad!  Passh pad!"

A Birth-Day story

Yesterday was Isaac's second birthday!  We celebrated with our families on Saturday and Isaac had such a wonderful time at his party.  He loves being around his grandparents and cousins and it was really neat to think about how much he has changed and grown over the past two years.  I think birthdays are a special, yet also a nostalgic day for mothers.  We are excited that our children are growing and evolving into their own being more and more every day, but we long to have just a moment where we can hold our baby like it was their real birth-day, just one more time.

Every year, on both Gabriel and Isaac's birthdays, I remember their births and I am reminded of how much their journey's shape my own life.  They make me remember pain, fear, sacrifices and joy and most of all Love are all a part of Motherhood.  Each emotion has its own special place for helping us grow.

Isaac's birth story is full of fear and pain for me, but it is also one that has taught me a very valuable life lesson.  It is no longer a painful memory to me; rather it is one of great gratitude.  I wouldn't change his story in any way.  Because if I changed even one little part, it wouldn't be Isaac's own unique story.  Each piece of his story is like a chapter in his book.  His book is one that I can't put down.  It has captivated me, taught me and also it has hooked me, through love.  I can't imagine loving him any more, and yet somehow, each day, that love grows.

Here is Isaac's birth-day story, 2 years later.

For ten weeks, I had been through so much emotion as I searched google, doctors, hospitals, blogs, but most of all, God for answers for why, how and what to I do?  How can I be this child's mother that faces SO many challenges.  What is the best thing for him when I know nearly every system in his innocent little body, faces challenges and surgeries ahead.  At 30 weeks pregnant, we had found answers.  God had led us to the right hospital, the best doctors, and we had had a new found hope, (Dan and I) through God and each other.

For the next few weeks, I tried to enjoy life as much as I could, mostly I did my best to spend the most time I could with my sweet little Gabriel.  I knew his life would be turned upside in a matter of weeks.  I was sad he would no longer be my only little boy in some ways.  I felt a little guilty that I would have to leave him and take care of a newborn.  I think in someways, this perhaps was a heightened fear because I had no idea just how long I would need to be with his new brother in the hospital.  Gabriel was so sweet and innocent that I didn't want to be torn away from him.  We had been so close since his birth, spending every day together.  I wasn't sure how our new days would look.  But Gabriel had taught me what it meant to be a mother.  He showed me that babies need so much work, but the love and joy that they give in return is immeasurable.  I loved Gabriel more than words described and without that love, I am not sure how I would have had hope that I needed to as I waited for Isaac.

After my parents came up for the weekend to help me get my nursery ready, Dan and I relaxed outside after they left.  I had just turned 34 weeks pregnant that day.  We knew that in about 1 week, Gabriel and I would temporarily move to Cincinnati with Dan's parents as we awaited the arrival of Isaac so that he would receive care from Cincinnati Children's Hospital.  On a whim, we decided to call our friends and ask if they would babysit Gabriel while we went out to dinner together.  I think we both knew we needed an evening just to be a couple before everything changed in our lives.  Our dear friends graciously watched Gabriel that night and Dan and I went to a quaint restaurant.  It felt good to get ready and dress up a little.

It was a beautiful, summer evening and not very warm so we sat comfortably on the patio.  I can't remember what we ordered, but I do remember that shortly after that I began to feel cramps.  I tried to push it aside as Braxton Hicks, but something told me this was more than that.  As we sat and ate, my "braxton hicks" contractions became more frequent and more intense.  As lovely as our dinner was, we had to cut it short because I just wasn't feeling right.  We picked up Gabriel and called my OB.  Because it was the weekend, I reached a doctor that wasn't even part of my doctors practice and I am certain he had never heard of OEIS, but I hoped that he would understand my concern.  He felt that I was probably dehydrated, but told me to go to the the OB floor and he would call ahead to let them know I was coming.

Fortunately, Dan's sister and her husband rushed over to watch Gabriel.  They camped out on our couch with him and we headed downtown to Grant Hospital.  Luckily, they did get me in right away and treated me well.  They checked out the baby, my contractions and after about 6 hours and an IV fluid treatment, discharged me at 2 am saying I was probably dehydrated......

I had a feeling though, this was not dehydration.  I hoped it was, but in my heart, I knew this baby was trying to come.  The next day was filled with more contractions, calls between 3 different doctors offices (My OB, my high-risk OB, and the new high risk doctors in Cincinnati that would eventually deliver my baby); all gave me different advice on what to do.  Because I was delivering in Cincinnati, but hadn't met those doctors yet (I was suppose to in 4 days), it complicated things.  The best way to describe how we felt that day was panicked.  Finally, despite advice to go to the ER, we took our chances around 4 that evening, packed our car up, loaded in Gabriel and said good-bye to our house for awhile.  I knew as we headed down the street it might be a long time before I arrived home, but I was too busy focusing on being calm and counting contractions to really be sad about that.

We made it to Cincinnati and Dan's Dad made us a delicious dinner; only I couldn't eat anything.  I could tell that things were progressing and that I should probably call the doctor.  We quickly headed to Good Samaritan Hospital.  It's hard to exactly remember what was going on in my head at that moment, but I do remember Dan and I discussing that we needed to have drugs to stop this labor.  It was too early for our baby to arrive.

After what seemed like eternity (probably at least 3 hours), a resident finally checked me and cheerfully said, oh yes, you are progressed and are at 4 cm.  I can get the OR ready.  (We had already decided a C-Section would be the best option for Isaac).  Woah!  No, there is no way we are having this baby tonight.  After Dan talking (shouting) with (at) the resident, we received a little more care and urgency in this matter.  After that, began the three days of blur to me.

They immediately admitted me and got me hooked up to machines, IV's and gave me quite a few shots.  Meds to stop labor.  Steroids to help strengthen the baby's lungs should he arrive soon. It all felt awful.  The next couple days were long and I felt horrible.  I had fear of his birth, but I was also so drugged that about the only thing that felt ok, was sleeping and listening to music. On Thursday, June 16 they had given me my last dose of steroids the night before and decided to wean me off the meds to stop labor.  If I went into labor again, he would need to be born. But also, I couldn't leave the hospital until he was born.

This brought a lot of fear.  Dan had stayed by my side since we had gotten there.  But it could still be a month of being hospitalized.  What if Dan left and I went into labor?  How could I be in the hospital and only see Gabriel for only a little bit each day.  Up until this hospital stay, I had never been away from Gabriel.  We figured Dan would go home that evening and come back on the weekend.  I would only be one day without him and they we would think about the plan for the next week.

I was finally able to shower that day.  Dan bought a beautiful cross at the gift shop that we hung across from my bed in my hospital room.  The hospital chaplain came by and did a healing prayer on me (she had also given me a prayer shawl that was knitted by volunteers earlier on Tuesday that I had been clutching since I received it).  Perhaps it was in my head, but after that prayer, the soft scent of lavender filled the room.  Whatever it was, it gave me a sense of calm.  Dan and I sat, listened to music and then we got out our rosaries.  My friend's mother had visited the day before and given us both beautiful wooden rosaries.  They were very simple, but they were special.  They were from Bethlehem and blessed there.  I was not Catholic at the time, but I had learned during my pregnancy to pray to the Blessed Mother Mary for her intercession.  Praying to Mary brought me such comfort.  For I knew that if there is any Mother that must have faced fear and pain by watching her Son suffer, it was Mary.  Late that afternoon, Dan and I sat down together, got out our rosaries, and prayed.  He taught me how to pray the rosary.  It brought us peace.  I think that prayer to Mary, helped me to feel like this will be a hard road, but everything would be ok.

Shortly after that, I started to feel contractions again and throughout the next hour or two, they got stronger and more intense.  They kept monitoring the baby and the baby was so stable.  My parents called and had said they were on their way down to Cincinnati for the weekend.  After a couple more hours, they checked me a learned that I was indeed in labor and progressing.  They began prepping the OR.  I started to become scared, but somehow it was controlled fear.  My only guess is that our Lord was holding me up.  I was so scared not only to have a C-Section, but what would be our baby's fate.  Would he come out alive?  Would he have all the birth defects they suspected?  Maybe a miracle would occur and everything would be healed!  Regardless, I just told myself to move forward.  I couldn't stay in labor, in this hospital forever, nor did I want to.  I was exhausted and ready to move on.  I wanted to meet this baby.  Who would he look like?

Right before I began to walk to down the hall to the OR, my parents arrived.  Just in time.  I was so glad they were there.  I needed them.  I gave my mom my rosary and prayer shawl.  I knew she would hold on and be praying.  At that point, I walked into the OR and just followed all the steps they told me.  It felt like forever until Dan was able to come in but finally he made it in and stayed right by me.

I hated to feeling of being strapped to a table, not being in control.  Having a C-Section had been one of my biggest fears.  All I could think of was, I can do this.  I am tough.  Then, all I could beg in my head was, please God, let him be alive and well.  It is hard to think of that moment.  Every time I do, it still brings tears to my eyes, but then I can't help but smile, when I think about the next moment.... hearing his little, but strong cry.  He was here!  And alive!

The next hour is a blur.  They immediately placed his lower half in a sterile plastic bag.  They examined him and he indeed did have OEIS complex.  His spinal defect was there, but it was covered in skin.  (Had it not been covered, he would have needed surgery right away and had more risk for infections like menigitis).  His movements were not strong, but he could move his legs and his feet!  They brought him over to me finally.

He was tiny.  He was beautiful.  I knew at that moment, his life might not be how I imagined or prayed it would be, but he would be ok.  He was strong.  As much as I wanted to heal him, I knew God had other plans for him.... perhaps bigger plans than I could have imagined at that time.  I had to surrender myself to God and His plans for Isaac.  I had to surrender my ideals of what motherhood would be for me.

At that moment I knew the challenge had begun.  God was asking me to be the best mother I could be; for the perfect soul with the imperfect body.

That is the beginning of his story and a huge part of mine.  I look at my scar and am reminded of his birth.  I am reminded of the fears I have overcome and the strength of this little boy. He goes into surgery like a warrior, comes out with a scar, but most of all, he shares inspiration to so many through his courage.

Most importantly, I have learned about our Lord's sacrifice and love for us all.  Our lives do not always play out the way we plan, but if we lean on God, remember the Love and sacrifice of His Son, and trust in His plan, then I know we will find more love and joy than we could imagine.   I know this to be true, because it happened to me.

Sand Baby

In less than 1 week, I don't think I will be able to call Isaac a baby anymore because he will be two years old!  It is hard to believe he is now becoming a toddler!  When we ask him how old he is going to be on his birthday, he proudly states, "two!"

About a month ago, we spent a nice family vacation at the beach in Florida.  It was the first time we had taken either of our children and they both loved it!  Gabe, loved the water and spent as much time as he could playing in the water.

Isaac tolerated the water, but he really loved the sand!

It always made me laugh when Isaac accidentally got sand in his mouth.  He would make a funny face and grind his teeth.  I would then ask him if he ate sand and he replied with that same annoyed look, "yeah."  Then I would ask, "is it yucky." Which he would always say, "yeah".  

The boys were so sweet and made me a sand castle on mothers day.  Gabe told me about this "surprise" the Monday before we left.  I think that might have made the memory even better.

Gabe was so proud of their sand castle, which had a short life due to the destruction of hurricane Isaac.  Luckily, there are many distractions at the beach and Gabe recovered with few tears shed.  

Perhaps the moments that are most important in life are how we live every day, from minute to minute.  But it is very renewing every once in awhile to take time out of our daily routines, to just relax, and that's just what we did.  

I am so thankful that Isaac's bladder is healthy so that we could finally bring him and Gabe to the beach and share wonderful memories together.  

Tiny Superhero Isaac

One day, I stumbled upon a blog called the Tiny Superheroes and I instantly fell in love with this awesome idea, from an incredible person.  Robyn, aka, Super Puddles, began making capes for children.... not just any capes, but Superhero Capes, so that the inner superhero in every child can explore in style!

These capes are for ALL children, as all kids are special, unique and super!  But Super Puddles, has taken this cause a step further and has been making capes and donating them to Extraordinary Tiny Superheroes; children that have faced disability, adversity, or medical needs in their lives.  We were so lucky, that in February, Gabe and Isaac both got special deliveries in the mail; their Superhero Capes!

The boys love their capes and wear them often!

I believe Tiny Superheroes is such a great cause.  They have been nationally recognized for their efforts in empowering young children all over!

Extraordinary Tiny Superheroes are featured on their blog and Isaac was their guest hero on April 23.  Below is a link to their website.  There are so many amazing children out there facing adversity.  Reading their stories is so touching and inspiring.  These kids define heroism.

Thanks Super Puddles for sharing your love and these heroes stories!

http://tinysuperheroes.com/

(scroll to April 23, 2013 to read Isaac's story)

Too long

Oh my.  It has been too long since I last posted.  I have so many ideas of moments to share with you all of Isaac's actions in the last month, but I think I will stick to sharing with you some glimpses of his blooming personality.

First, I will say, he has become very fiesty.  I think we've always known this little guy has quite the personality, but he has added a bit of show-off, fiesty, don't mess with me attitude.  I suppose this is actually a good thing.... I am sure he has had this within him all along as he has faced his challenges head on, but we had not seen... or should I say felt it till now.

I will give you an example.  When I am holding him and introduce him to a new person, he puckers his lips, glares at the new face and proceeds to scratch my face!  He doesn't leave marks, except a bad impression and an embarrassed mama!  I am really hoping that this little phase passes soon!

That example was not so cute, however I will now give you an example that will make you smile (or at least makes me smile).

Second, he is a show-off.  If he is in his wheels and someone comes to see him or there are people around him, he starts doing really fast spins in his wheelchair!  After a few fast spins he looks up and grins really big at everyone.  If a new person comes up again, he repeats his little show.  It makes me laugh every time.

He has been getting around any way he can, wheel, crawl and scoot.  And he likes to get away!  The other day I went to get something in the bathroom and he was in his room.  I heard his bedroom door shut, then hysterical toddler laughing.  He had crawled across his bedroom and shut the bedroom door on me!  He thought he was SO big and SO funny!

Third, he is loud.  No matter where we are, he lets us know if he is pleased or displeased with the situation. This is not always great, like at church or the library, but other times, it does help me out like when I ask him if he wants something.  He also gets really excited about things like Elmo, dogs and watching his big brother play Mario Cart.  He wants to be sure everyone else gets excited about these things too.  I can hardly explain his little motion, but he does a small gasp (when he sees something like the above things), looks at you, and turns his head back twice, very fast.  This is often repeated by another head bob, a point and "look!"  I wish I could capture this on camera, but it is always so fast and sporadic, I am just not sure it will happen.

I probably say this at every age, but he really is at a fun age right now.  It is so fun to see all the sides of his little personality emerge.  It is neat to see what his likes and dislikes are.  Even his vocabulary is changing.  Throughout the past 6 months, he has evolved from called his brother (Gabe).... Bubba, Babe, Gabe, Gabey, Gabe Gabe, and now Gabra (I think perhaps his attemps at Gabriel).  He adores Gabe and often wants to do what Gabe is doing.

Despite the small challenges that a fiesty child may cause, I am actually very thankful for his strong personality.  I know it has been within him his whole life, fighting to be his best and showing the world, he is unstoppable!

Bae- Bee

Since Isaac was a baby we have tried everything from the thumb, to multiple types of pacifiers, stuffed animal, blankets, etc, but Isaac didn't really attach to any of them.

Until the fateful day when he played with his cousin Mallory's dollhouse and he became attached.  He became attached to Baby. Or as he insistently loudly states, "Bae-Bee!"  Baby is a toy baby from a dollhouse set.  He played with Baby all afternoon and I didn't think much of it until a month later when he was playing at his cousin's house again.  This time, he found Baby right away and once again played the rest of our visit with him.  Playing with baby mainly consists of holding him and putting him into random placing and taking him out.  We were heading home that day and while I thought we had cleaned up all the toys before we left, it turns out we had a stowaway.  Isaac was guilty.

Isaac had stolen Baby from his cousin Mallory!  With the orneriest grin on his face, Isaac proudly held him up and said, "Bae-Bee!"  I did everything I could to contain my laughter and explain to a 19 month old child the lesson of stealing.  (I know, so silly to do because he had no idea, but I felt responsible to turn this into a teaching moment).  We called Aunt Amy and she graciously offered Baby for Isaac to keep. Now this was Mallory's toy and she is the cousin most close in age to Isaac. They are almost 1 year apart.  I knew they had years of playing with each other in the future and  I didn't want to taint this friendship at such a young age over this tiny toy Baby. Luckily, Mallory was ok with this transaction and had more babies in her dollhouse collection.  (I should note that there were about 5 Babies in this collection and each time we went, Isaac always wanted this one.  The little curly, red haired one.)

Well, since Baby has joined our family, Isaac has been pretty inseparable with him.  If you don't see Baby in the pictures just look at Isaac's hand.  Baby is usually squeezed in Isaac's tight grip.

They eat together.

(disclaimer- there is no medicine in these droppers.)



They ride in the car together.

They go to bed together.

And even when Isaac was waking up from anesthesia last week, the nurse told me the two things he kept asking for.....

Mommy and Bae-Bee.  (Glad I was included in his wants still!)

So Isaac finally found an attachment item.  Not quite what I had in mind, but it will do.... if only I could find a couple duplicates.  I forgot to mention, I have lost track counting the hours we have spent searching for Baby.

Oh yes, and Isaac's new trick is dancing.  You will see in this video his love for Baby and his cool new moves!
Isaac dances

casts

The boy finally got casted for his little pointing feet.  He had a small surgery Tuesday to lengthen the heel cord tendon so that they could move his toes from a pointed position to a flat foot.  They then put casts on him that will stay on for 3 weeks while they make AFO's (ankle/foot orthotics).

 As you can see though, he isn't really bothered by them.  He doesn't fit great in his chair, but for short times it is ok, and he is not as mobile on the floor. It hasn't bothered him too much.  He has just been using his voice more to demand what he wants....

I think the rest of us are more annoyed with them than him.  Most importantly though, his feet will be flat.  He will be able to wear shoes, and who knows, maybe someday he will be standing tall on those two flat feet!  One thing is for sure though, whether he stands or not, he will have on cute shoes!

Happy weekend everyone!

time for a toddler

Well folks, I feel confident in saying, my little baby is becoming a toddler.  It makes me excited to see him change, grow and blossom.  Everyday we see more peeks of what his personality is like.  The best part is seeing how proud he is when he accomplishes something new.... I know he is no longer a baby.  My days of holding and cuddling my sweet little baby are slowly stretching away.  I have been consciously be more aware of the moment and being in gratitude each night I nurse him to sleep in my arms.  At that moment, I realize just how little he still is.  I know his nursing days are nearing an end, and that is ok; he is getting older.  He no longer needs or wants that from me, but I am going to savor each moment that we have left in that journey.

But this post really isn't about me soaking in his last days of a baby, but rather it is all about the trouble that he has been getting into in his first days as a toddler!

His latest achievement is that he has begun to crawl on his belly!  Earlier this week he did it with each of his physical therapists.  He needed a little assistance, but he was doing most of the work. Well, now he is fearless and doing his best to fling himself forward and pull himself towards toys, books and anything he sees that he wants.  Yesterday I ran upstairs from the basement for a moment and when I returned, he was no longer sitting, but he had moved a foot and looked like this....

He was taking every book he could off the shelf and was sooo proud!

Just a couple hours later I heard a thud during his nap.  I ran upstairs to find that he had thrown his book out of the crib and had pull his way upright and was holding onto the rails looking out. I almost ran down to grab my camera to take a picture (because it was pretty amazing to see a child, paralyzed, upright on his body, gripping with his strong arms); but then I realized what a stupid idea that would be and instead snatched him up and cheered with him for being such a strong boy!

Needless to say, that night, daddy lowered his crib.  I can honestly say, I never thought I would need to say that we lowered his crib!

He has been ornery as ever and loves rolling around and getting into things.  He likes to go over to things he knows that he is not suppose to, looks at me, says, no no, then touches it.... like the trash can, the baby-proofed outlet covers and the drawers on our side table.  He is such a stinker.

But perhaps my favorite part of all is the new phrase he has been saying, "look, momma!"

Here is a glimpse of his budding personality.

Silly boys at lunch

Eye Love You

I remember my sister telling me when I was pregnant and anticipating the birth of my first child, "there is nothing like looking into your own eyes."  I took her word for it, but now I know what she means.  There is something deeply magical looking into your child's eyes.  I realize not all children have the same "eyes" as their parents.  Some children don't have the same genes as their parents.  This isn't about the genes or the matching eye color or perhaps not even about a child.  Maybe it is a spouse, friend or niece or nephew.

Looking into eyes can take you to another place. It's like travelling to a sacred place where life's distractions are lifted and for a moment, you have peace.  It's where love runs deeper.  It's where physical differences, abilities and disabilities aren't present.

I hope that when strangers look at my Isaac, they look into his eyes; that they do not stare at his physical differences.  In the same breath; I hope they do not turn away and not look at him at all, for fear they might look too much.  I hope rather, they look into his eyes and see the kindness, orneriness, joy and love that he is filled with.

I hope that people do not assume just because my Gabriel looks normal, that he has no pain or hardship.  For so often, we (as in people including myself) look at the outside of someone.  When they see a well-dressed, nicely manicured and put together person, we are so quick to judge.... that person is so happy, so wealthy....so whatever.  Truth be told, we all have crosses to bear and pain to experience.  I hope that people look into Gabriel's eyes and find out who he is.  I hope they look to his eyes and they will see his love, his compassion, his spirit.  An while yes, that might match his outside.... I want them to know the inside is where the true heart of a being lies.

We all have natural and God given gifts.  We all have Love.  They are within...some are deeply buried, some surfacing like a pot about to boil.  Others are so aware of these gifts that they are exploding out to be shared with the world.  I think that when we look into the eyes of another, we help to bring that LOVE that we all have within, out.

This Valentine's Day, I realized, just how important it is when we, "Eye Love You!"

The brakes are off

Watch out world.... Isaac knows how to unlock the brakes on his wheelchair.  I learned this the hard way today when I ventured out with the boys to the library.  I got Isaac out and put him in his chair and had him beside the car as I got Gabe out.  This was taking me a little while because Gabe had fallen asleep on the way there.  I look over and and Isaac had unlocked him wheels and was heading toward the parking lot!  I am sure I looked like a crazy woman trying to keep on hand on his chair, while pulling a half awake child out of the car telling him, "wake up, we're here... Isaac stop!"  And to add the chaos Isaac was yelling no and pushing as hard as he could to break free from my grip.  

It continued our little scene in the library.  Isaac being the loud toddler who loves books was yelling, " boooo, booo" at nearly every book he saw.  He would proceed to wheel to every book and try to take it down.  I would hand him a book, he would drop it... and the process would start over.  Thankfully Gabe was quietly attached to the computer game, which worked to my advantage  until it was time to go and I had to tell him about 7 times that we had to go.

Ah, but there was a silver lining.  Gabe got a library card! He was pretty proud.  And we all made it home safely.

I guess I will better prepare for our next library trip!

The boy loves......

Books!

He is always wheeling over to his little book basket.  This animal book is one of his favorites.... Is it any surprise he loves the book with dogs in it?!

He wheels around with his books.  (This book is his absolute favorite.  A little books about a girl and a dinosaur that we got from a Cheerios box!)   He has looked at it so much that the cover has fallen off.

He sleeps with his books.  Every time we get ready for nap he yells, "Boooo Booo" until he gets a book.   ( As a side note, we are still working on the ending sounds to his words.

If you try to take his book, watch out.... he has quick hands and a mean face grab.

And perhaps my favorite time to watch him "read" is when we are sitting down for breakfast on a Saturday morning and he flips mindfully through his book while he sips on his pediasure.  He ages himself in that instant by about 40 years!

Lately he has been wanting books in the car too.  It is so cute to hear him flipping through the pages as we are driving along.  I often wonder what he is thinking about when he looks intently at his books.

And just as a side note, I want to thank those who gave me multiple copies of The Very Hungry Caterpillar.  You saved me from breaking up what could have been a big battle!

Date Nights

I am the only girl in our household.... but I don't mind....  I love my tough guys.

Sometimes they all blank out in true male fashion and stare at the TV.... like above.  They play basketball, tackle football, and have wheelchair races around the house.  I am sure these activities will one day break something special to me.  These activities might raise my blood pressure once in a while, but when it comes right down to it; I wouldn't have it any other way.  

My tough guys bring me such joy, peace and love.  The littlest tough guy, Isaac gives the best kisses.  And though I feel bad when Isaac turns his head away from daddy to give me a kiss instead, it secretly melts my heart.  I love the way he reaches for me to pick him up in the morning and I love the way he rubs my eyelashes as he falls asleep nursing at night.  

Gabe, my middle man is like a ball of warm, happy energy.  Always looking for the fun in life.  He gives the best hugs and I love the conversations we have been having lately... Recently every time we ride in the car we rate the songs on the radio... "is this your favorite song, mommy?" and "do you love this song too?"  

And Dan, he is my rock.  Always sturdy and strong on the outside caring, generous and loving on the inside.  He will do anything for our little boys and myself.  I am so thankful our little boys have such a role model to look up to.  

I am one lucky girl.  2013 has treated me to many date nights with these guys.  We have been so blessed that we have family and friends that have been so generous to offer their time to babysit our boys.  Since Isaac's birth it has been hard to get out a lot, just Dan and I.  Not because people didn't offer, but between breastfeeding, learning his care, trying to create routines,etc, etc.... life got busy. This was true after Gabe was born too, I just forgot about it.  I think our date nights have been good for the boys as well.  Isaac is learning how to see me leave him without crying and learning that others can put him to bed too.  Gabe is thrilled when others watch him and I think he takes those opportunities to get as much playing time in as possible!  Dan and I have enjoyed our time out together.  Not because we don't love being with our boys because we do, but because it's good for us to just be each other without worrying about being mommy and daddy for a little bit.  Of course we think about the boys and our conversations often are about them, but it's nice to not be interrupted by 20 questions, dropped sippy cups and restroom trips.  It is fun to actually go out to eat at a nice restaurant and take a stroll hand in hand downtown.  

Dan and I have also been able to take the boys on special dates too.  On Martin Luther King Day, Dan ventured out with the boys to COSI, a science museum nearby.  The boys had so much fun and so did Dan.  With Dan working and me staying home with the boys, he doesn't always get to have this one on one time with them.  I could tell he really valued this special day.  I was eager to hear that Dan also tried new ways to help Isaac be more mobile.  He figured out a way to take him and his little ZipZac chair out and about.  He loaded Isaac and the little wheelchair (which is only meant for inside use because there is no handle or brakes) into our double stroller.  He then was able to let Isaac play in his ZipZac in the play zone.  Isaac loved this independence!  And of course, he inspired the adults around him as he zipped from toy to toy.  Isaac loved the water table too!  

Dan has had some late night work functions so I have taken that opportunity to take the boys out and about.  Wednesday night I took the boys to the mall and played at the indoor playground.  They both loved it.  At first Isaac was a little annoyed because it is a hard place for him to play.  For a child that can't walk or climb, climbing toys on playgrounds offer little enjoyment.  I have to hold him up on the oversized climbing animals and help him down the slide.  But while we were playing Gabe offered to hold Isaac and go down the slide with him.  I was hesitant at first, but the slide was little so I let him.  It worked out really well.  Gabe and Isaac both laughed the whole time and wanted to keep sliding.  Gabe learned a bit of responsibility and Isaac had to trust him!  We topped our date off with a little Chick-Fil-A and then headed home.  The radio DJ must have known I was out with my boys because as we were driving into our neighborhood the song, Life is a Highway by Rascal Flatts came on, one of Gabe's favorite songs.  (Lightning McQueen's theme song must be every 4 year old boy's favorite song.)  It was a good date with my little guys.  I hope that they never feel too old or embarrassed to have date nights with their mama.  

I think it is important to find the time for date nights.  For our family, it helps us to forget about the daily rush of things and just enjoy our little time away.  They don't have to be expensive or elaborate.  The playground was completely free.  While the everyday activities are the experiences that probably shape our children the most, I hope that these special dates with mom and dad will bring great memories.  I am sure their time with grandparents, family and close friends babysitting them will be great fun,  and bring fun memories, but it will also help them know that they have so many people that love them.  

Snow Day!

It snowed sometime last week, so we bundled the boys up and ventured outside.  Isaac has seen snow, but I think this was the first time he really played in it.  

Gabe helped me shovel the driveway and was such a good helper.  I can honestly say, he requested to shovel the drive.  I really didn't put him up to it!  

 

We then woke up Isaac from nap and took him on a sled ride!

Gabe wanted to help pull Isaac.  

And Isaac loved it!

When we went to take Isaac out, he bawled and tugged on his seat belt.  I think he had a good time and hopefully we will get another snow so we can play in the snow again!

One foot, two foot, sock foot, shoe foot...

We have known about Isaac's club feet before he was born.  On our 24 week ultrasound when we learned about Isaac's spina bifida, and omphalocele and also his bilateral club feet.  To be honest, it was the least of my worries.

Here is an ultrasound of his little feet moving!  Even his little toes were wiggling!  It is always my proof that he did once have movement!

http://www.youtube.com/watch?v=D3EDsQj6yLg

When he arrived into this world and I tickled his little toes, I couldn't help but melt over his tiny, precious, crooked little feet.  They were seriously the tiniest feet I had ever seen.  They just barely filled Dan's pointer finger.

They were quite prominently clubbed at birth, however we noticed after he had his spinal surgery, everything seemed to relax a bit.  His toes still pointed inward and down, however not as much as before.  We continued to wait to fix his feet until he had recovered fully from his spine surgery and bladder and pelvic surgery.  The process to fix his clubbed feet would consist of a series of castings to slowly bend out his feet.  After months of casts, he would then probably need a surgery to clip his heal cord and finally he would then have boots made that he would wear for several years to come.  

Last week we went to see Isaac's orthopedic doctor to proceed with his feet repair.  When he examined his feet he was surprised to see that they are no longer clubbed.  They do point downward but they didn't seem to be clubbed!  From what I understand, his repair will begin with a small surgery to clip/release his heal cord as it is very tight making the feet point down.  Before he leaves surgery they will put casts on his feet so that his feet will stay in the corrected position.  He will have these casts on for three weeks while they make AFO's for him.  AFO's are ankle-foot-orthotics.  They are little braces molded specifically for his foot so that his foot will have support to stay in the correct position.  He will most likely wear these for a long time.  The AFO's will help his feet from going back to how they were.  Since they are not clubbed we have avoided weekly cast changes to turn the feet outward which would have consisted of 6 to 12 weeks of casting.

What does it mean to have his feet fixed since he can not walk or stand?  It may give him the chance to stand in the support of a stander someday so that he can be upright at times.  It also means that he will be able to finally wear shoes that will actually fit and stay on his feet (sometimes we try to cram his little feet in shoes, but usually they just fall off).  Being a shoe lover, this brings me great excitement!

18 months!

This is almost a month behind now, but our little man is 18 months old already!  

Isaac had his 18 month check up with his pediatrician Friday.  Overall, he is doing great, but he did not gain any weight since his last checkup in a month.  His growth chart is a bit at a plateau and he is very small for his age in both weight and height.  He has become a very picky eater and we are a little concerned. We just want to know we are doing everything we can to help him reach his maximum growing potential.  This is an area that I hope and pray to see much improvement in and one we will continue to work on.  

On another note, I must add that he really has been surprising us lately with great milestones.  Just today he rolled for the first time ever from his back to his tummy on the floor without any support!  He then proceeded to push himself up on his hands and knees.  He tried so hard to sit up from that position but his little legs got in the way.  He has no feeling from his waist down and his legs are very floppy so we help him to move his legs around to get into a sitting position.  He must watch us do this because he touched his leg like he knew he needed to pull it around. If he would have had the strength to lift his leg with his arms he would have accomplished getting into a sit on his own! 

  His vocabulary is growing and he is very loud.  He has changed from calling his big brother from "bubba" to "Babe" (Gabe).  He knows what the dog, cow, duck, frog, and cat say.  His favorite word is no and is not afraid to use it.... alot!   He knows his family and calls us, mom, dad, Bapaw (for Papa), Mimi (for Grammy), Pap Pap (for Pap Pap) and Mum (for Grandmummy).  

I look forward to seeing what changes and growth will occur in the next six months!  If you are looking for a specific prayer for Isaac, he could use some extra prayers that he has improved feeding and growth.  

     

follow your heart into the new year

Lately, I have been obsessed with these bistro mugs from (www.theuniverseknows.com.  You should check them out!)   Perhaps I should say I am more obsessed with the simple yet thoughtful sayings on them.  This is just one of my three mugs from my new little collection.  

Santa brought this mug to me this year!  So, to Santa, I say, this is my new 2013 motto! Thank you for the idea!

I am not normally one to write down new years resolutions.  I have some in mind and I always feel a strong sense of renewal, but I don't like to write them down and dare I ever tell them to anyone, let alone the internet!  But this year, I feel compelled to share.  I think it gives me a little more responsibility if I share, but also, it only make sense to share.  It's the purpose of my resolution.  

...follow my heart.

We all have purposes and missions in life.  Some of these missions are clear to us and some a bit fuzzy. It takes courage and guidance to better understand them.  Hindsight always gives clarity to some of these purposes.  Today, I was sitting here thinking about why I may have changed majors in college from architecture to teaching.  I had always, since I was about  8 years old wanted to be an architect.  Ever since I saw the most awesome, grand staircase and wanted to learn how to design a house with an awesome staircase like it.  My dad gave me a drawing sheet of drafting paper and my first drafting scale and taught me how to draw to scale. On Saturday nights when most kids were out having fun, I would spend hours at my desk, drawing my dream homes.  (All of which included beautiful grand staircases).  I was hooked and ever since then, I knew I wanted to be an architect.  Architecture classes at Ohio State were intense and bit out there for me, but that wasn't what tore me away from the career.  I knew as I sat in class something was missing in it for me.  I wasn't sure what, but I knew if I chose architecture, I may have felt like I needed more.  After some thought, I realized I needed a profession that I got to be involved in working with children and shaping their lives in positive ways.  I had always babysat and helped out at things like Safety Town in the summers and I always loved it.  I felt like I was making a difference and it felt right.  

So, when I changed majors to early childhood education, I was a bit sad, but I knew in my heart it was the right thing for me to do.  Teaching may have been even more challenging than architecture.  You can stay up drafting and forcing yourself to design, but you can't make 20 tiny, intelligent and spunky 5 year olds to listen to you.  You can do your best to inspire and teach, but ultimately you can't make someone learn.  That is up to each person young or old.   Nonetheless, I did grow to love teaching and ultimately I knew I was fulfilling something that I felt strongly about; helping each child know they are special and unique.  I liked finding each child's unique characteristics and qualities and I loved trying my best to help them use their talents.  It was fun to see how each child brought life to our little classroom community.  

I have not thought much about this for awhile, but recently it dawned on me that perhaps God graced me with a child with a physical disability and a typical child for a reason.  I see that the differences between them are more about differences in their spirits rather than their physical differences.  This year I have decided to follow my heart and do what I can to help this cause.  I am not sure how this will play out or what it will look like, but I will follow my heart in helping children be accepted for their spirits.  I will continue my mission of helping children know they are unique and special.

I realize this might seem like an inappropriate place to share these personal thoughts but they are inspired by Isaac and his attitude. His journey helps me to have a stronger sense that ALL children NEED to know their importance.

 Isaac sees the world without worry or embarrassment that he is "differently abled" than most.  I want him to always feel this way.  I want him to be strong in his sense of self and know that he is one of a kind.  I would like others to see as Isaac sees....without limits .  Likewise, I have another child whom does not have special needs but is just as special as his brother.  Gabe sees his brother without judgement or fear.  He does not see his wheels as a hindrance but just as a part of his brother.  I hope that I can do my best to help others know as Gabriel knows....without judgement.

 

Let's let the greatness of each child shine!