Monday, January 23, 2012

Sierra 1-2012

learning

smiling

communication

laughing

looking for whats next

climbing mountains

loving my bubbies 

hugging
  Hello, I am Crystal Wells. My husband, Michael (34) and I (31) are parents to five awesome kids, four boys and one girl. Donavon (13) is our oldest son and is proud of being on his junior high football team for 2 years. He has a big heart but is in that transition stage to teenager. Cameron (12) is our second son. He is the kind of kid that gives 100% in everything he does. He is a caregiver and helps out even without being asked. He Loves art. Its his true passion. Brendon (10) is our third son with a timing all his own. I've seen him take an interest in taking pictures and messing with electronics. Auston (9) is our fourth son and is full of jokes. He loves to talk and sing even if its to himself. He is an animal lover from dogs to snakes.He also loves to build things. He tells us he wants to build homes for people that can't afford to. He also wants to become a doctor so he can find out whats wrong with his sister. Sierra (5) is a thief because somehow she stole all of our hearts. She loves music, microphones, drums, the piano and doesn't want to sit still long. She is like a yo yo from one place to the next. That little girl makes me smile everyday. She is the happiest special needs child I have ever seen. All four of Sierra brothers are SO awesome with her. We're so proud of how protective and gentle they are with her. Below is her life summary to date.


"OUR ANGEL"
Sierra has been diagnosed with Severe Global Developmental Delay... we are not comfortable with that diagnosis and feel she may have been put into that category for the lack of knowledge of what is truly going on with her. Our angel just turned 5 on Dec. 18th, 2011 but is like an 18month old; in pull ups, can't talk, ride a bike, jump or even feed herself well with utensils and has eczema, low immune system, hypotonia and to often nursemaid's elbow, restless sleep, (grinding teeth, kicks, sit up and  flip flops all over the bed and gets up wanting to play in the middle of the night) balance and coordination problems, sensory problems, short stature, small hands and feet, still puts hands and other things in mouth and excitement screaming.

My pregnancy went fine. I had night sickness the first few months. When I was about seven months along, I went in for a sonogram and they thought she was going to be a down syndrome child. Testing came back fine. I went into labor two weeks early, at 12:13. we just made it in the room at 10cm, had no meds. Less than an hour after contraction started, DOB 12-18-06 at 1:46am. 6lb 12.1oz at 19inch long. Seeing and hearing was fine. She had slight jaundice (all my kids were 2 weeks early with jaundice) We were sent home 2 days later. I started out breastfeeding but had trouble and moved to a bottle at a week old. She had trouble with her bowel movements, stool was so hard and big, had to have help all the way up to a year old. They put her on polyethylene glycol (laxative) even with that, I had to use Vaseline, q-tips and my hands. She would have blood in her stool and cried each time. At about 3 months old, Sierra was put in the hospital for a week with pneumonia and bronchitis due to aspirating. The testing showed when she swallowed, it would go into her lungs. They also put her on oxygen when she sleeps. She had oxygen for a month and 1/2. I took her off the bottles at 6 months and gave her a sippy cup with straw. Her 5 month checkup, I told her doctor she wasn't rolling over, pushing up or even holding her head up well. He said, let's see her back at 10 months to see what she can do. I questioned this, but tried to trust the doctors' decision. Sierra didn't get any stronger by then. I made her sit with a breastfeeding pillow. She is very flexible, also has been burned and bitten by ants and never cried or showed pain. I feel she doesn't feel pain which should be a symptom of something. I had to change doctors to doctor Zganjar. He acted as if he cared when we started t see him but he act surprised each time we go in and tell him she can't talk. She was sent for a MRI, plus blood work and started physical therapy at 11 months. She has not had an MRI since. Still no answers. Started scooting about one and never crawled. Started Occupational Therapy at 13 months. About one and 1/2, she started speech and seeing a neurologist, Doctor Weimer every six months. Many many blood test have been done with no answer. The therapist ordered foot braces at 2 years and a walker at 2 years 4 months. Started to see a geneticist, Doctor Marble. At the age of 2 and 1/2 she was walking without the walker. She started to get therapy at home 9-2009 till age 3years. Was running at 4 years but not as well as a normal child. Started school 8-2010. Sierra is 5 and isn't potty trained, still can't talk, jump, or ride a bike. She tries to feed herself with utensils and drink out of a regular cup but hasn't conquered it. She is a silent choker and she must be watch as she eats. We are working on it daily and some days are better than most. She likes to take her shorts/pants off along with her dirty pull ups. If i don't catcher her in time, she will play in her fecal. She has a fascination with books/paper and loves to rip it. We try to keep markers and pins out of reach because she is an artist. Her neurologist said she needs to see a orthopedic for scoliosis. Sierra had her 5th birthday with many family and friends. She was overwhelmed with a crowd and became clingy. She is very loving, giving hugs and kisses to anyone. She is not progressing like she should and we are not comfortable with the dianosis.
Caring mom,
Crystal Wells

8 comments:

  1. Our lil angel is as sweet as can be. Sierra is such a happy lil person yet she does get frustrated when she is unable to communicate the things she wants and needs. We as a family will not stop researching to find her balance in life. She will not hesitate to keep up with her brothers. I am so proud of our lil angel and her family for providing the most normal life a little girl can ask for. Memaw is so proud to be trusted by God to have placed me in the main stream of importance in Sierra's life. I look forward to the day our baby girl finds that balance of normacy. Lots of hugs and kisses!

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  2. Dear Sister - I HAD NO IDEA by all the fb photos and post I thought she was like any other 5 yr old. I WILL put her on my prayer list RIGHT NOW!!! I am getting off here and fb now to bring her before OUR LORD!!!! She IS AND HAS BEEN delivered of this demonic attack IN JESUS NAME, I CLAIM HER, her mind, body, soul and spirit for the KING OF KINGS AND LORD OF LORDS!!!!! The demons and satan himself have to flee from Sierra because she belongs to JESUS CHRIST and HIM ALONE!!! - Love ya sweetie

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  3. There is a condition called sensory neuropathy. Its where they don't feel pain because the brain doesn't send the signal for pain. I'm praying for your little girl and that you get a true diagnosis so her treatment can begin.

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  4. Crystal and Mike I am so sorry to hear that baby Sierra struggles. I am going to keep you guys in my prayers. I don't know what I would do with my child having an "undiagnosed" illness!! You are great parents and are very strong! I cried as I read your blog and wish that I could do SOMETHING to help. The only thing I know to do is pray. I am praying for Sierra but also for you and your boys. I'm sure it is tough but you guys seem to keep going keeping your strength..which is tough in ANY situation! I pray that someone gives you comfort in diagnosing her illness. Stay strong guys. God is on your side!

    Melissa

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  5. Crystal I remember us talking about ariana and sierra the day me you and sandy all hung out. Even though I don't say it enough....I'm thinking and praying for sierra and for you and mike to have the strength to get all the answers you need. This was so tough to read but I'm glad you are able to talk about it! Love you girl!

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  6. Thank you all for encouraging words

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  7. Only God knows why he gives us our "special" babies. Even when you do have a diagnosis, for me at least, it hasn't made things easier. Knowing all of the hurdles he's going to have to face is very scary. All we can do is pray they will have the best quality of life possible. In time God will give you the answers you'll need to deal with whatever comes to pass. If you need a good pediatrician let me know. Dj's drs have been great since his dx. Love u guys. Amy

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