Interview | Lessons from my daughter

Today, we meet John while chatting with his mom Nancy!

Hi Nancy, let’s talk about John!

A: “John was born in Germany at 36 weighs and weighed 5.1lbs. During my pregnancy I had an amnio test done and we were told that we were expecting a perfectly healthy baby girl. When he was born they gave him 24 hours to live. When he was 5 months old we moved to California, according to doctors he was going to pass away and it was best if he did so in a place where we had family support. He spent 3 months in the hospital, 2 of those weeks in a coma. He was discharged with a trach and a g tube.

When he was a year old he suffered a double stroke. He spent 13 days in a coma. I was told that he would never wake up and if he did he would be a vegetable.”

Wow, that’s a lot of time in hospitals and many statements from doctors stating how short John’s life was going to be.

Can you tell me more about your doctors?

A: “We have had doctors who are genuinely concerned for him and want to help him. We’ve also came across doctors who do the bare minimum. He had a PT who was absolutely amazing. She pushed john to new levels. After only a couple of month john was mobile using a walker.”

At this time, our conversation got quiet… I learned later that John was in the hospital which is why Nancy got sidetracked…..

It’s never easy… It’s a journey!!

John is now 5 years old and has a FB page

John’s page
Anything in conclusion?

A: “They said he would be a vegetable and last year he started standing.”
Way to go John! You keep showing them!!!

I know it’s not the weekend but I’m always excited to share interviews with all of you!

So today, we meet Olivia!

1. Hi Meredith, can you tell me something about your family?

We are a family of 4. Myself, Julio,Sophia (13) and Olivia (11). We are a multiracial couple. We have been married for 14 years. We recently moved from Indianapolis to buffalo to be closer to family for support.

2. Can you tell me more about Olivia?

Olivia is an auburn haired, green eyed beauty. She is an incredibly happy child. She is very tactile. She was born at 37 weeks at 2.69 kg. she spent 2 weeks in the NICU. I breast fed for 7 months but she had severe reflux and was struggling with weight gain. She weighs in now at 61 pounds and is right at 5 feet. She has multiple genetic abnormalities. 5p 15.33 to 15.2 which makes her a Cri Du Chat. She also has a duplication at 5p 15.2 to 5p 12 and a duplication on her X chromosome Xq 21.1. She also has a diagnosis of CP. She has scoliosis which was noticed at 11 months and it got to 90 degree plus and she had surgery at age 8. She is nonverbal/nonmobile. She does make vocalizations when happy or irritated. We currently have no formal communication. She is happy 98% of the time. She is classified as severe/ profound and considered medically fragile. She started having seizures at age 8. We are just starting to try an eye gaze communication device. We hope to find a way that she can express her wants. She is super skinny but can walk in a gait trainer.

3. Can you tell me about doctors or therapies or school? How are things since you moved?

Since we just moved last August from Indy to Buffalo I am still finding the right doctors for Team Olivia. In Indy we were spoiled to have fabulous doctors from Riley hospital and St. Vincent hospital. I miss them. I look for doctors that are knowledgable , compassionate , up on current medical trends and have a sense of humor. If they are condescending or don’t realize we are a team than they have to go. I love her new school called the CHC in Amherst NY. It is a wonderful school for children that are severe/profound or medically fragile. They truly understand the needs of children like Olivia. Currently all therapies are done through the school. We will pick up outside therapies. Transitioning to a new state and getting Medicaid was beyond a nightmare.

4. Tell me a success story!

A success story would be when Olivia was around 6 a doctor said he did not believe that she would walk based on her current lack of response when sitting and failing to catch herself. She would just fall. Last year her Riley PT told me that she believed Olivia would walk. In a gait trainer, but she believed she could. I just went to her IEP for next year where her teacher told the home school district that Olivia is now walking in the hall ways. We measure Olivia’s advances in very tiny increments, most people would miss them.

5. Anything else you would like the world to know?

I would like the world to know the challenges we face cannot even be conceived by the typical family. We have spent too many nights in ER’s and hospitals unsure that our child was going to make it, yet we go on. We smile and do the polite nod to passer byers. We are tired, lonely and depressed behind closed doors. Our lives are scheduled between feedings, medications and doctors appointments. We don’t get the fabulous vacations and our retirement dreams are gone. We worry about our child’s future and who will care for them when we are gone. We worry that people will be cruel to them or hear what they are saying within ear shot. We struggle to find balance between their needs and the needs of other family members. We love our children completely, if given the choice to have a do-over and a life without them and it’s struggles, we would choose them without hesitation .

Well said Meredith!