1. Please pray that Mikan's airway continues to heal so that he may be able get his trach removed this summer without major surgery.
2. Mikan also is having problems with his g-tube stoma. Please pray that it heals enough so that it doesn't hinder the rest of his development.

1. Mikan is learning to communicate by using sign language! He knows over 100 signs!
2. He is also finally cruising around the furniture with ease and tolerates being capped during all waking hours.

Mikan was born via C-section in South Bend, Indiana on March 5, 2008, weighing in at 1 lb, 12 oz. He was 28 weeks gestation, but had been living inside the womb for 2 1/2 weeks after my water broke (I was on bedrest at the hospital). There was no known reason for his early membrane rupture. Mikan spent almost all of his 141 days at the NICU on a ventilator. He went home for 2 weeks, then returned to the PICU for another 6.

He was diagnosed with laryngomalacia when he was 3 months old and had a tracheostomy soon afterward. He had several other surgeries while in the hospital including a PDA ligation, corrective laser eye surgery for Stage 3 retinopathy, a hernia repair, and a g-tube placement and Nissen wrap.

Today he is thriving at home, but still breathing with the aid of a trach (we just ditched the vent!), and we are still using his g-tube as his primary source of nutrition. Mikan's prognosis is good. He has chronic lung disease, but we are praying for his continual improvement with time. He has a scope on June 29th where an ENT will check the status of his upper airway and then either remove some obstructions if they are small enough, or take pictures and refer him to a specialist for an airway reconstruction surgery. We are constantly amazed at his pleasant temperament despite all of the discomforts in life he could complain about. Mikan's favorite activities are reading Baby Touch and Feel books, trying to grab the remote or phone when we're not looking, and playing in his Johnny Jump Up. He is developing a beautiful personality, and we thank God every day for his presence in our lives.


Hope said...

We are always praying for Mikan. He is Ava's macho-man!

Anonymous said...

Mikan - Although I don't see you; I think of you every day. I will never forget you and always say a special prayer for "Mikan". Nurse Dee

Anonymous said...

What an absolutely gorgeous guy!

If you go to my blog on the right side bar to my sister's blog ("Inside Amy's world") she has a son with CP and may have ideas that you would find helpful?? just thought I would offer her to you :) Blessing for your family ..Shi~

Elizabeth Mahlou said...

Thirty years ago, I was in your place. My youngest son, Doah, had a trach. He was among the very first to survive in the USA. We were told: no hope. That's okay. The "no hope" has lasted 30 years and counting. He is a very active, involved "hopeless" kid and has brought blessings to countless people (seriously). If you want to talk to me by email, I will be glad to share.