Tuesday, July 26, 2011
The joys of being a Woman
So since Thursday I have been having a horrid pain in my stomach and I thought it was just muscle soreness from working out, but over the weekend it got worse not better. Last night just switching from one side tot he other was excruciating so I made a drs appt. After 2 and a half hours at the naval clinic I have discovered that i have yeat ANOTHER uterine infection a possible kidney stone and possibly a cyst on my right ovary.... great
Wednesday, July 20, 2011
Arthrogryposis
Anna Was diagnosed with Arthrogyrposis which is used to describe joint contractures at birth. This is very rare, it occurs once in every 3000 births. We are not sure which type she has, but our insurance will not cover the clinical testing to find this out BUT there is research studies being done on it so we will be looking into that. Children with arthrogyrposis can lead a normal life but can have heart defects (she just has a murmur) or central nervous system problems but otherwise progress nicely. The other good news is that arthrogyrposis is a non progressive disease. The genetic dr said that if anything is going on in her brain that it is probably very small due to how developmentally well off she is!
Tuesday, July 19, 2011
Anna's GI Appointment
So we took anna to see the GI dr today. They put her on zantac and having me add a little bit of olive oil in her bottles for the extra calories. Over all it was a huge waste of time and gas because the dr didn't answer any of my questions and shoved me off to a nutritionist but wait not before telling me that it appears anna's height and weight are both down ummmmmm no.... and then i was like well she gained weight i just had her at the dr's yesterday and she was 5 ounces up and shes like well when i see her gain weight on our scales then i will be happy. So they want us to drive an hour ever week to weigh her.
Monday, July 18, 2011
Anna's Weight Check!
So we took Anna to see Dr. Gross for a weight check, she is up to 9lbs 11 oz! We took her off the 22 Calorie formula a week ago since it was making her spit up and the fact that 4 days ago she was 9 lbs 6 ounces and off the 22 cal formula and is still gaining weight at a good rate that is a really good sign!!!!!! The dr we saw today also said that because her cognitive awareness is good (she is looking at you smiling and cooing) and she is hitting her milestones on time she wouldn't worry about anything serious in her brain! (Lets hope she is right!)
Anna Also had her first sweet potato today and she was in love she kept squealing because i wasn't giving it to her fast enough! Well I will let you guys know more tomorrow!
Anna Also had her first sweet potato today and she was in love she kept squealing because i wasn't giving it to her fast enough! Well I will let you guys know more tomorrow!
Friday, July 15, 2011
Anna
Anna was born March 24, 2011 6 days before her due date so she wasn't early and she wasn't late. She weighed 5lb 3 oz yes she was very small. She was born Via C section where the dr. discovered my uterus was extremely small. With my uterus being small and the lack of fluid I had, Anna was born with a few problems.
We were initally told everything was fine and she was a healthy baby, but the night we took her home, she had a diaper explosion leading to a bath. After her bath, Anna's hands and feet turned blue. The conditions of our house were correct for a newborn, we even kept it a little bit warmer for her so this shouldn't have happened. We took her to the ER where she was admitted into the NICU for 72 hours. There they discovered her problems. Anna had a turbulence murmur which is a hole between the ventricles in her heart (this should eventually close). She was also diagnosed as having contractures of the arms and legs.
Contractures causes tightness not allowing her to extend her arms or legs to the fullest extent. Since she has been diagnosed she has been going to Physical therapy once a week, and her legs have been able to fully stretch out but her arms have not. I took her to the dr to get a paper for formula for WIC and they discovered she wasn't gaining weight properly ( another side effect of contracture). They have come to the conclusion that the contractures cause her to use a lot of energy and she needs more calories than the typical baby. So They gave us a referral to a GI specialist at Rhode Island Hospital with Hasbro Children's and we have an appointment on the 19th. They also gave us a referral to Orthopedics at Yale and a Neurologist at Hasbro. We went to the Orthopedic specialist and they said that if her arms don't work out in 3 months they will do xrays because she could have an elbow defect.
We also went to the Neurologist and this was a big appointment (it took 2 hours) They discovered anna has no muscle in her upper arm and are afraid that if her arms don't loosen she could be at risk for fractures later and think that something in her brain is either not transmitting properly or her muscles just don't want to work the way her brain is telling them to. So they gave us a referral to a Genetic Dr at hasbro and we see them on Wednesday to get genetic testing done.
We want to find out if there is a genetic disorder causing her size and also if there is a reason for my early delivery of abigail and my 2 miscarriages. On top of all that she also has to have a MRI of her brain done as well. This will be all under sedation so all the genetic testing and if GI wants to go a endoscopy it will all be done at the same time. I'll update on wednesday after our appointment with the genetics specialits.
We were initally told everything was fine and she was a healthy baby, but the night we took her home, she had a diaper explosion leading to a bath. After her bath, Anna's hands and feet turned blue. The conditions of our house were correct for a newborn, we even kept it a little bit warmer for her so this shouldn't have happened. We took her to the ER where she was admitted into the NICU for 72 hours. There they discovered her problems. Anna had a turbulence murmur which is a hole between the ventricles in her heart (this should eventually close). She was also diagnosed as having contractures of the arms and legs.
Contractures causes tightness not allowing her to extend her arms or legs to the fullest extent. Since she has been diagnosed she has been going to Physical therapy once a week, and her legs have been able to fully stretch out but her arms have not. I took her to the dr to get a paper for formula for WIC and they discovered she wasn't gaining weight properly ( another side effect of contracture). They have come to the conclusion that the contractures cause her to use a lot of energy and she needs more calories than the typical baby. So They gave us a referral to a GI specialist at Rhode Island Hospital with Hasbro Children's and we have an appointment on the 19th. They also gave us a referral to Orthopedics at Yale and a Neurologist at Hasbro. We went to the Orthopedic specialist and they said that if her arms don't work out in 3 months they will do xrays because she could have an elbow defect.
We also went to the Neurologist and this was a big appointment (it took 2 hours) They discovered anna has no muscle in her upper arm and are afraid that if her arms don't loosen she could be at risk for fractures later and think that something in her brain is either not transmitting properly or her muscles just don't want to work the way her brain is telling them to. So they gave us a referral to a Genetic Dr at hasbro and we see them on Wednesday to get genetic testing done.
We want to find out if there is a genetic disorder causing her size and also if there is a reason for my early delivery of abigail and my 2 miscarriages. On top of all that she also has to have a MRI of her brain done as well. This will be all under sedation so all the genetic testing and if GI wants to go a endoscopy it will all be done at the same time. I'll update on wednesday after our appointment with the genetics specialits.
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