Learning of Joseph’s hearing loss

Hearing post 3 Nov 2014 copyI find myself becoming sentimental every May and August. There is something about the beginning and end of the school year that causes reflection on the past and goals for the future.

Joseph graduated from preschool a year ago. Where in the world has the last year gone?! Today is his last day of kindergarten. Kindergarten! Wasn’t he just born? Wasn’t our two pound one ounce survivor twin just fighting for his life in the NICU? Weren’t we just told he may never walk or talk due to his extreme prematurity? Weren’t we just given these grim statistics about his life?

Our miracle is about to complete kindergarten. Amazing.

On top of the end of the school year wrapping up, May is also difficult because it was during May of Joseph’s NICU journey that we learned he had Auditory Neuropathy Spectrum Disorder. As musicians, being told your child has a hearing loss – it’s devastating.

During one of Joseph’s visits to day surgery for an endoscopy, his room in day surgery overlooked the garden where we first realized he couldn’t hear. It was incredibly poignant to see him looking out the window at the garden while also seeing his cochlear implant (this was before he had received his second cochlear implant surgery). I tried to tell him the story but he didn’t quite understand (he level of understanding has increased dramatically since this happened).

Continue reading

Easter photos…a little late.

Joseph and Emily thoroughly enjoyed Easter this year. This was the first year they have really gotten into Easter egg hunts. They each had an Easter egg hunt at their schools and we went to two egg hunts as a family. We were blessed with some beautiful weather during the Easter holiday.

Joseph was very excited to have his picture made with the Easter bunny. He wasn’t afraid at all – he sat down right beside him with a big smile and wanted to have his picture made.

Emily, on the other hand, wasn’t so sure. I asked her if she wanted to sit by Joseph and have her picture made. She looked at me and said, “No, Mom. He needs to take his head off first.” I have NO idea where she came up with that – it was all I could do to keep a straight face and hope no one heard her say it!

Maybe she will at least sit beside Joseph next year!

Easter 2016 2 Martin

2016-03-27 copy

Easter egg hunt 5 copy

Easter egg hunt 6 copy

Easter hunt 1 2016 copy

Easter hunt 2 2016 copy

Easter hunt 3 2016 copy

Easter hunt 4 2016 copy

Egg hunt 7 copy

Happy Mother’s Day

Happy late Mother’s Day! It’s hard to believe this was my seventh Mother’s Day. I remember my first like it was yesterday. Joseph had been in the NICU over six months and we were days away from his intestine reconnect surgery after his near fatal bout with Necrotizing Enterocolitis.

It is amazing how much life has changed since that day!

I could not be more thankful for Scott, Joseph, and Emily. I love my amazing family.

2016 Mother's Day 3 copy

2016 Mother's Day 1 copy

2016 Mother's Day 2 copy

(Joseph did NOT want to have pictures made and Emily was trying to make him laugh!)


What is it about this week?

This post was originally set to go live on Friday, April 15 after Emily’s surgery on the 12th. In the early morning hours of the 15th, Emily started running a fever and developed a horrible cough. I decided not to have the post go live in order to see what transpired with Emily.

A quiet blog…again. This has been quite the insane school year (we knew it would be) and I knew there would be quiet moments on the blog. I sure am hoping this is the last one!

Emily surgery 1 copyWhat is it about this week in April? Six years ago last Monday (April 11), Joseph underwent surgery for Necrotizing Enterocolitis and subsequently lost 2/3 of his small intestine. That surgery forever changed his life.

Six years and one day later (last Tuesday), we found ourselves back at the hospital for surgery. No, not Joseph this time. Emily.

Not long after we returned from the out of state Eosinophilic clinic, a place that looked to be a hernia appeared on Emily’s stomach. I had her at the pediatrician a few days later and we were referred to a pediatric surgeon. I called the surgeon’s office who did Joseph’s NEC surgery. We were given an appointment date a few weeks later. When the surgeon walked into the room, I realized we had seen him in the ER several years ago with Joseph.

Continue reading

Our visit to the out of state Eosinophilic clinic

CCH2Feb2016 copy We recently made our visit to the out of state Eosinophilic Clinic for Joseph to be seen by some of the leading doctors who specialize in Eosinophilic disorders and short bowel syndrome. There are not enough words to thank everyone for their support whether it was financially, praying for the trip, checking in while we were gone – we are forever grateful.

The week started with an early appointment with one of the GI doctors who runs the Eosinophilic (EE) clinic. He asked lots and lots of questions. It was clear he had spent time before our arrival going through Joseph’s numerous records that had been sent. The question that is always hard to answer is if Joseph is in pain. For so long, he didn’t have the language to tell us he was in pain. It’s just been in the last nine months or so that he will tell us when he is in pain. Also, he’s never had a time in his life where he didn’t know pain and I think it is something he has learned to work through and deal with. He gave the okay for the endoscopy later that day.

We had a little time before our arrival time for the endoscopy. We explored the hospital, found some magicians entertaining kids in the hall that Joseph thorough enjoyed, and waited for our arrival time. We got checked in for the endoscopy and went straight back to day surgery. The nurse and anesthesia team were incredibly thorough in going over all of Joseph’s allergies and medical complications.

CCH1Feb2016 copy(I have to digress from the progress of the visits and tell you how much we LOVED this hospital. It was the attention to the little details – we never waited more than five or ten minutes past our appointment time before being called back (I’m used to waiting forever), when we checked into day surgery, Joseph was given a new coloring book and crayons (sure, I had brought activities to keep him busy but who doesn’t love a new coloring book?!), everyone, and I mean, everyone, we came in contact with made us feel like Joseph and our family were the most important people they were dealing with that day. The biggest impression was made when they told us we would be able to stay with him in the operating room until he was asleep. Our jaws about hit the floor (this hospital was quite surprised to learn that we’ve never been allowed to go back with Joseph at a children’s hospital). This was the 14th time sending Joseph to the OR and we were able to walk with him down the hallway and stand with the doctors until he was asleep. Do you know how many tears this would have eliminated over the years?!?! It’s the little things in life…)

Continue reading

Happy Valentine’s Day

Joseph and Campbell were due on February 17 but they came on Halloween. Imagine all you have done since Halloween. That’s how early our boys were born.

It’s mind blowing every year when we approach Valentine’s Day and I realize how much we have done in the last 16 weeks and I think to just how early the boys were born. Even now, six years later, it’s hard to comprehend that a baby born that early can survive.

At the age of six, Joseph made his first Valentine for us this year. It’s the best Valentine present EVER. He had OT this week and came running to me at the end of his session with this. His therapist told me Joseph did all the cutting, gluing, and writing by himself. She simply gave him the heart template. SO incredibly proud of our boy.

Vday 2 2016 copy