Our extended family

Having a child with a rare diagnosis is some what isolating.

After Emily was diagnosed with Cri du Chat Syndrome in Oct 1999, nobody else in our world had Cri du Chat Syndrome, nobody had even heard of it.

Seriously, even our doctors didn’t know anything about it!

Facebook helped us connect with other families and when I started to blog, I decided to introduce you to some of our extended family!

Here are my interviews so far!

21. Let’s meet Arizona

20. Let’s meet N.

19. Let’s meet Jie Jie

18. Let’s meet Turner

17. Let’s meet Kali and Kera

16. Let’s meet Natalie

15. Let’s meet Wade

14. Let’s meet Nellie

13. Let’s meet Dustine Aaron

12. Let’s meet John

11. Let’s meet Olivia

10. Let’s meet Alexia

9. Let’s meet Allan

8. Interview with Rachel

7. Let’s meet Maxwell

6. Let’s meet Katie

5. Let’s meet Kelli

4. Let’s meet Rachel

3. Let’s meet Elijah

2, Let’s meet Allie

1. Interview with Emily

If you would like to be added to the list, please send me a note or reach out in the comments below!

💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜

NEW!!!  We have a facebook page: If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page.

You can also find me on Twitter at @plebrass

I am on Pinterest too: Lessons from my Daughter

I just discovered StumbleUpon but I have no clue what to do there: I believe you can find me under plebrass but I need to spend quality time there.

Find more about about Cri du Chat syndrome at 5p- Society

Emily has a her own page in the family stories , you can find it here: Emily

 

 

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Interview with Sherri. Let’s meet Arizona!

Hello,

It’s bright and early here.  My husband is still sleeping and Emily is playing in her room. Soon Jake will need to go out, he’s just patiently waiting for Jon or I to make some noise…

I love this time of day!

I love that Emily can get up, go to the bathroom and get back to bed to play.


Most people would take this for granted as their kids get older, for us, this is a big success story and I don’t want to ever forget it. 


Before I get up and start this beautiful day, let me share with you my last interview. 


Hello Sherri, can you tell me about your family?


We have a daughter named Arizona that has cri du chat syndrome.  Arizona has a big brother who she loves and adores named Gabriel. 

  


Tell me more about Adizona and her life with cri du chat syndrome.


Arizona is currently five years old.  She was born on May 8, 2010.  She was born a month and a half early and spent a month in the Nicu following her premature birth. She was diagnosed with this syndrome after spending a month in the nicu.  At two days old she had jejunal atresiasurgery due to a blockage in her intestine.  At the same time, she also had an appendectomy.  The doctors said the blockage had nothing to do with the syndrome that it was just random like her deletion.  

Due to getting surgery at two days old, Arizona had to undergo all of the necessary blood work to clear her for surgery and at that time, they noticed her white blood cell count was low and did further testing.  The day we took her home, her diagnosis was confirmed.  She also has an unbalanced translocation of the short arm 5 p with chromosome 19 where a portion of 5 attached to 19 but the top portion of 5p 15.2 and above is deleted.  Some of 19 attached to 5 but all of 19 was still there so therefore they said 19 should not affect her.      

  


How are her doctor appointments, therapies and/or school?


Arizona’s receptive language development substantially exceeds her expressive skills. She has about a twenty word vocabulary but is not consistent and uses some signs and an iPad to communicate.  We play the “Signing Time” videos by Rachel Coleman to help limit frustration by increasing her sign and vocabulary.  Arizona needs a lot of sensory integration during the day.  She loves to listen to music and dance.  She loves the water, animals, and going to the park.    

Arizona does really well with potty training the last few years.  She is pretty much dry most of the day and a few nights a week completely dry.  Of course this is still a work in progress.  Arizona takes a few steps independently and walks well assisted.  She does get stubborn at times when it comes to walking.  Arizona was nursed for sixteen months.  She feeds herself and eats everything.  She really enjoys eating.  She blows kisses, gives high fives, and shakes hands.  When asked what sound the pig makes, she does it well.    

I started Arizona with Early Intervention for speech, occupational therapy, and physical therapy as soon as I found out about her syndrome.  I also put her in aquatic therapy through children’s hospital.  

I am currently on a leave of absence from teaching over ten years in order to continually dedicate my time and energy so that my daughter’s growth and development will be optimized to her fullest potential and by dedicating myself to working with her full time after she comes home from school.  I also have a Masters in Educational Administration and hold a principal and supervisor license.  Arizona is attending a school for children with different abilities.  Her school is the Jardine Academy in Cranford, NJ.  She receives therapy on a daily basis which includes speech, physical therapy, and occupational therapy. She continues to see doctors and specialists.  She recently had eye surgery in January to correct her strabismus.  She requires the use of her afos that are slight dorsi flexion with an smo insert to help give her stability.  She also has scoliosis and has to wear a thoracic lumbar brace for sixteen hours a day.  In addition to therapies in school, I also take Arizona for outpatient therapies.  She attends Medek twice a week for 45 min. per day.  She is also in hippo therapy once a week for 30 min.  I believe these therapies will maximize Arizona’s fullest potential.  

  

Would you like to share a success story with me?


We have many success stories for Arizona.  She never ceases to amaze us.  Every day she learns something new and surprises us.  One success story is the potty training.  She has gotten so good with it.  She uses the potty sign when she has to go and sometimes goes to the potty to let us know.  It’s not a hundred percent but it is definitely wonderful.  Her being able to reach out, pull to stand, and even take a few steps on her own and walk well with assistance.  Feeding herself is still a little messy but she can do it.  


What else would you like the world to know?


Overall, Arizona is a friendly and happy little girl.


Thank you Sherri for taking the time to do this.