Interview with Alicia – Let’s meet Natalie!

Let’s continue our interviews!  Today, we chat with Alicia! 

1.  Can you tell me about your family?

There is just the 4 of us. We live in Hamburg, Arkansas. Natalie was born June 21, 2008 and Dillon was born June 23, 2004.   

 

2. Tell me about your loved one with cri du chat syndrome.  

Natalie Grace Wilson, born June 21, 2008 after a somewhat hectic pregnancy. We got her diagnosis when she was less than 2 weeks old. We got the speech of not being sure what she would be able to do. She has overcome so much. She loves to watch nick jr and Disney jr. Her favorite color is purple. She loves to fight with her dad and brother. Loves bubbles and playing outside. Loves animals and most people. She loves shopping. She’s a very social loving little girl who will say hi and smile at anyone. 

3. Tell me about doctor appointment, therapies or school. 

Now, not so many. We just do sick visits and check ups. We’ve been to cardiologist, Ent, audiologist, geneticist, general surgeon, etc. 

She goes to school at noble elementary in Hamburg Arkansas where she is in the 1st grade. She is in special education classes and does pullouts (pe, art, music, etc) with her regular class. She also has PT, ST, and OT all twice a week. They also work in groups and one on one. 

4.  Tell me a success story. 

She has learned to walk, run, climb, etc. Physically, she has no limits (except being clumsy). She has learned to count out loud to 5. She can count and identify up to 10. She can tell you all the colors and shapes. Her main restriction is that she has limited speech, but we are working on this. But she has come a long way. 😃 

 

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

This sweet sassy stubborn loving little girl has made it where we look at the world a different way and made us more appreciative of the little things. She doesn’t believe she has any limits and I believe this has been a major influence in how far she has come.

  

Interview with Meredith – Let’s meet Olivia

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!