It has been a little over a month since I have posted.  Bodi is growing so fast.  We are enjoying every single second with our little miracle.  His new favorite things to do are go outside and visit his doggy friend Daisy, go to the park, and play with his cousins, friends, and of course siblings.  His favorite thing at the park is the slide.  The bigger the better.  He gets so excited when he sees one!  He is such a silly boy and loves to laugh.  He loves to play peek a boo, loves when we chase him around, and he absolutely loves to eat.  I know every parent is partial to their child, but I know he is the BEST!  

Better get the windex!

In my last post I spoke about Bodi’s procedure to fix his aspiration problem. We had a followup swallow study last week.  I went into it knowing that Bodi was still having an issue, and I was right.  The study showed no improvement while he drinks liquids.  It doesn’t matter what type of cup or bottle he uses, there is still deep penetration.  We are waiting for Bodi’s oncologist and ENT to decide where to go from here.  The good news is that he has not gotten sick yet, is gaining weight and thriving.  The speech pathologist has given me the necessary tools I need to proceed until then.  I honestly can not say enough about her.  She has been a light at the end of the tunnel in regards to this problem.  She has made such an effort to come see Bodi after surgery and constantly keeping in touch with me.  She has made a huge difference for me and completely eased my mind in this situation, and for that we are so grateful.

Although March has been a pretty warm and cheery month, I have had one date looming over my head.  Bodi’s one year diagnosis date.  March 29th.   I find myself daydreaming and stuck in the days before my sister and I drove him to the hospital.  I can remember sitting in my sister’s guest room crying because Bodi was not doing well.  As a first time Mom, I didn’t know what to do.  His tummy was hard as a rock, he wasn’t eating, he was constantly crying, wasn’t sleeping and was all around miserable.  My sister and I tried every method to soothe him.  NOTHING worked.  I remember calling and texting Bryan to please get on the next flight to California because I didn’t know what to do.  We decided to take him to an urgent care where the doctor examined him and decided it was colic.  After showing me the football hold, he sent my sister, Bodi and me home and said if it gets any worse the next step would be the ER.  The next night around dinner time I finally got Bodi to lay down.  I put the monitor right in front of his face and made it upstairs to find my sister had made my favorite meal.  As soon as I finished the last bite I heard Bodi choking.  I ran downstairs and scooped him up.  We went straight to the emergency room.  I held my breath the entire time and choked back tears.  I was terrified.

As we rushed into the Emergency room, I stopped and scanned the room.  It was PACKED.  My heart sank knowing how long this would take.  The window opened and they asked us to come in the check in room to evaluate what was going on.  I told the nurse all of the symptoms and she felt his belly.  I could immediately see she was concerned.  Bodi was crying the whole time and she grabbed something called sweeties.  She dipped his paci in the sugar-water and he was immediately quiet.  She turned to the other nurse and said to get us a room.  The check in nurse quickly snapped that there was 4 month old who has been waiting for 3 hours who should go first.  She cut her off and basically ushered us right back to a room.  I was relieved that we didn’t have to wait and so grateful to this woman who took my concern to heart.  She said it may be a bowel blockage so we had to get x-rays immediately.  We knew that the slew of testing would mean that he would not be able to eat for a while so I tried to nurse Bodi.  He wasn’t having it.

Waiting for the x-rays

Snuggling his Ra Ra

After what seemed like forever, they came to put an iv in Bodi and then took us to get an x-ray.  I remember carrying Bodi, who was wrapped up in a blanket with only his head peeking out,  through the halls of Oakland Children’s hospital.  I remember being scared, but not having any clue as to what they would find.  I thought maybe a bowel blockage.  I laid him on the table and talked to him while they took his x ray.  He was so good and it took no time at all.  We went back to the room and waited for the doctor to come in.  And waited, and waited.  My sister had been on the phone with Bryan to keep him in the loop.  I remember turning the recorder on my phone to make sure I got what the doctor told us.  I am never good about remembering details and I didn’t want to forget exactly what was said when relaying the information to Bryan.  I have the whole conversation taped.  His liver was so large that it was pushing his diaphragm up resulting in lower lung capacity.  His organs were all smooshed, making his stomach so small that he wasn’t hungry.  They had found a large mass next to his spine, which was curved.  His spleen was also very large.  They were admitting him to the hematology and oncology floor.  I looked at my sister and just started to bawl.  By this time it was around 4 am in Cincinnati.  I called Bryan and told him what they found.  He was getting on the next flight out.  From that moment on my sister kicked into high gear.  She asked all the questions, she called my family.  She literally held me up when I fell on the floor, she sat in his room with me.  The next morning they sent us to the PICU where they took phenomenal care of us.  They kept Bodi comfortable.  When his oncologist found out we were from Cincinnati she literally jumped for joy.  She went to school with the best oncologist who was practicing at Cincinnati Children’s hospital.  She and the Chief of Staff did everything in their power to get us back home to Cincinnati.  The rest is history.

If a one year diagnosis date isn’t enough, it is also the day of Bodi’s scans.  It’s going to be a very hard day for us because the memories continue to flood us.  I know that he will do great and the results will be improved from the last scans.  Please keep my little guy in your prayers.  We are looking forward to taking Bodi to the park to celebrate how far he has come.  

With out all of you praying, checking in on us, and loving us I don’t know where we would be.  We have had so much support and it means the world to us.  We love you all and just want you to know how appreciative we are.