A Little Blessing: Take me out to the ball game...

Sunday, April 25, 2010

Take me out to the ball game...

After a busy week including two doctor's appointments, we ended the week with some fun at the Mud Hens game. I'm pleased to report that the orthopedic doctor has evaluated Brandon's bone structure and has informed us that his bones look great! Aside from Brandon being small in stature, his bones are healthy, proportional, and developing appropriately. One of the concerns with Brandon since birth was for possible dwarfism. At this point Brandon has NOT been diagnosed with any form of dwarfism . He will continue receiving his nightly shots for his growth hormone deficiency and continue scheduled follow up appointments with his specialists to monitor his growth and development. Now... if we could just get the upper respiratory/wheezing issues resolved. :)

2 comments:

JDApril 29, 2010 at 11:52 PM
He is a real cutie! Have you been connected to The MAGIC Foundation for kids with growth disorders? It is just moms like me...www.magicfoundation.org
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Amy BurdittApril 30, 2010 at 5:26 AM
No I have not heard of The MAGIC Foundation. Thank you for the referral. I will check it out!
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Oral-facial clefts are birth defects in which the tissues of the mouth or lip do not form properly during fetal development. In the United States, clefts occur in 1 in 700 to 1,000 births, making it one of the most common major birth defects. Clefts occur more often in kids of Asian, Latino, or Native American descent.
The good news is that both cleft lip and cleft palate are treatable. Most kids born with these can have reconstructive surgery within the first 12-18 months of life to correct the defect and significantly improve facial appearance. http://kidshealth.org/

I remember going in for my 20 week ultrasound. I was so excited to find out if I was having a boy or a girl. My midwives told me that so far all of my labs and vital signs were picture perfect for a pregnancy. Then it happened...I saw the ultrasound tech's face turn serious. She kept taking more and more pictures of my son's face, but wasn't saying anything. With my medical background I knew the possibilities; I finally came out and asked..."What's wrong?","Is there a cleft?". The ultrasound techs aren't allowed to really say anything until it is confirmed by a doctor, but she did say she wasn't sure. Tears began to roll down my face, but I was trying to stay strong. My daughter was with me and I didn't want her to be scared. More and more pictures were taken. I was then asked to wait 4 weeks before I came back to get another ultrasound. This would allow my baby more time to grow and then confirm what they thought...my baby was going to have a cleft lip and palate. I was devastated, but there was nothing I could do. I searched online for any information and pictures I could find to satisfy my desire to learn more. I had no family history of this birth defect. I was referred to a high risk doctor for further evaluation...from there my world began to fall apart. The more and more they checked my baby inside my womb, other concerns began to develop. As it turned out, my little boy was not measuring "normally" and the doctor was worried about a form of skeletal dysplasia, specifically - achondroplasia. For those of you who don't know, this is the most common type of dwarfism. They sent me to a neonatologist to learn more about different types of skeletal dysplasia. Some skelatal dysplasias are lethal, but most have a good prognosis. This was the point when I opted for an amniocentesis to rule out a diagnosis of achondroplasia or chromosomal defect. I felt I needed to do this to prepare myself for what was to come. I had hit my ultimate low...what was wrong with my baby growing inside of me...would I finally have him and lose him all too soon...what did I do wrong...why is this happening to me? Many more weeks of anxiety and anticipation...and then the amnio results came in. Everything was normal!...(Sigh of relief). Still feeling nervous, not sure how my baby will look or what the severity of the cleft will be, but am definitely more hopeful at this point.

A Little Blessing