A Little Blessing: Medical update

Sunday, July 19, 2009

Medical update

Since his last surgery, we have had further testing done regarding Brandon's growth. As it turns out, he has a Growth Hormone Deficiency. We meet with his endocrinologist soon to discuss more of the details, but it is likely he will be starting growth hormone injections in the near future. This means we will have to give him nightly injections...sorry little guy. Some kids receive these shots up until the age of 18.

2 comments:

DominickJuly 21, 2009 at 8:47 AM
Great job Amy! I love this! Sending love to you and your family!
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TomJuly 23, 2009 at 10:33 AM
Amy...Seeing your journey before my eyes is truly amazing. It is not just Brandon's journey but in a way it is a journey that all of us are on with him. I remember seeing him for the first time and not knowing what to expect. All I know is that when I held him in my arms that very first time and dedicated him to God, I loved him more than I could ever have imagined. Little did I know then how much joy one little special needs guy could bring to so many. The fear of the unknown before birth and the pain in the reality after his birth has turned into an amazing experience in celebrating God's awesome plan for our lives. I have cherished every step of the journey and even now when looking back through the photos, I am struck with tears running down my cheeks while a smile sits firmly on my face. I am proud of you and Chris. You are amazing caretakers of this special gift.

Journey on!
Dad
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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