therapies | Lessons from my daughter

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!

Thank you so much for talking to me and for being so candid in your answers!

UPDATE April 18 2015: Peyton is getting her bike!!!

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Do you remember how it all started?

I mean my blog… 🙂

Emily was excited about going to New York to the Cri du chat syndrome conference and decided to tell the world about her syndrome. She made a presentation at school and I started writing this blog.

My way of sharing how Emily has been inspiring us daily.

When we finally made it to the conference, we met incredible families.

One on them is Peyton’s family.

That little girls stole all of our hearts from the moment we met her. Peyton’s smile and ability to walk and dance was so amazing to us. I couldn’t stop looking at her. Haley was attentive and caring for her younger sister and Jeff and Kelly appeared to be looking at Emily as much as we looked at Peyton. Such an inspiring little girl.

They are truly a beautiful family and today, I want you to meet them and share this post as much as possible so in the near future, Peyton can ride her own bike.

1. Tell me about your family!

My husband Jeff and I have been married for almost 13 years, and we have two beautiful daughters. Haley is eleven and Peyton is five.

Of course we don’t lead the typical life. I feel like our lives are constantly in fast forward, but that’s our “NORMAL”, so that’s ok.

Jeff is a truck driver and I’m a nurse, so between work and family life we have very little spare time!

Haley is in sixth grade and is a wonderful big sister. Peyton adores her!!! I love to see the bond that they share, and I pray that the bond grows as they get older!

2. How is Peyton doing?

Peyton is doing absolutely AMAZING!

We have been through many struggles since the time she was diagnosed back in 2011.

Like many CDC parents, we were told that Peyton would never walk or talk. We wanted to be sure to get her every single service and therapy she needed.

For two years, I fought nonstop with our local school district for an out of district placement because the program they had was not appropriate for Peyton. We hired an advocate and an attorney, and I basically learned every single law myself.

We won, and Peyton was placed in the greatest educational placement. We were left to battle the district year after year.

The district was only offering to pay for a one year placement. We chose to make a really hard decision and sell our home and move into the district where Peyton’s school was located. This way, she was guaranteed all she needed. Needless to say, Peyton has grown leaps and bounds. She started school, only being able to verbalize 10 words. Now, she is up to over 200!

She is in an integrated classroom with typically developing role models. It is just what she needed to learn and grow. She plays and interacts with the other children, can count 1-10, can sing her ABC’s, knows all her colors, and the days of the week.

Oh, and most recently, she can recite the letters to spell her name! The other day, she began SINGING a song that was on the radio! I cried! We are so blessed!

3. I’ve seen your Go Fund me page to get Peyton an adapted bike. I’ve look at those way back for Emily, they are quite expensive. How are your fundraising efforts coming along?

Yes, the bike is just about $4000 with all the modifications that Peyton needs.

The Go Fund Me Page for Peyton’s adaptive bike was created two weeks ago. We have raised $2,400 and have also received a few private donations as well.

Two great friends of mine are also hosting their own fundraisers for Peyton so we can reach our goal to order her the bike. We are so grateful for all those who have supported our special little girl.

Note from Pascale: this is the page, every penny counts, if you can help Peyton get her bike, please do so. If you can’t afford to help, please share this blog or share her go fund me page on your Facebook! Pedals for Peyton

4. I see pictures of Peyton and videos of her and I think she’s just an amazing girl. Can you tell us about her therapies?

Thank you so much! Peyton has been receiving outside therapies for 2 1/2 years and has PT, OT, Speech for an hour once a week.

In school, she receives PT twice a week, Speech three times a week, and OT three times a week. School also works on feeding therapy as well. She also goes to aquatic therapy with her entire class, and that is by far her FAVORITE!!!!!

We also play music all the time for Peyton, and that calms her immensely. She still loves to dance and SING! She really loves putting on a performance for others!

5. Is there anything else you would like to tell me?

I wanted to thank you for taking the time to get to know Peyton and our family. I am so thankful that social media has connected us with so many families.

The conference back in 2013 was amazing. We felt like our lives were NORMAL for once. No judgment, just lots of encouragment, tears, and laughter.

I remember seeing your family and thinking ” Wow! I hope Peyton is just as successful as Emily. That child is so inspiring.”

Now I’m tearing up…. I should have read this part before starting to put it all together. Thank you Kelly for your kind words.

I believe that all of us as parents need to push our children to the limit, no matter how grim those medical professionals portray our children’s diagnosis to be. Aggressive therapies are key along with multimodal communication.

Peyton continues to use sign language, picture symbols, her Ipad and spoken word to communicate. And I believe that her verbal skills have improved significantly.

When all of us received the news that our children had CDC, we felt the same feelings of hurt and sadness.

My worse fear was fear of the unknown. As the years have passed, I try not to dwell on those things. My priority is to push Peyton to the limit, to be sure she receives all she needs to be successful, and most importantly to be HER VOICE until the end of time.