|looking for whats next|
|loving my bubbies|
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.