A Little Blessing: September 2010

Thursday, September 16, 2010

Cleft Clinic 2010

Brandon in the doctor's office...

Another great visit. We met with speech therapy, plastic surgery, oral surgery, ENT, and genetics again. Brandon is right on track. Next surgery estimated between 7-10 years of age. Speech therapy to begin sometime next year. I was super excited to see that some of our new friends at clinic would be receiving one of our special blankies.

Growth Update

Recent trip to see the endocrinologist showed moderate improvement in Brandon's growth. He is now officially on the growth chart measuring in at 27# in weight (25th percentile) and approximately 31" in height (aprx. 10th percentile). He is starting to lose his baby face more and more :(, but I'm so glad we are seeing some results.

First year of growth hormone therapy complete...

First picture was 2009, first shot. Second picture to the right is one year later.

Pulmonologist Consult

So we were referred by our pediatrician to see a pulmonologist due to Brandon's countless respiratory infections/breathing difficulties. Allergy testing was recommended by this specialist as well as for Brandon to continue his Singulair medication and inhalers. The allergy testing confirmed that Brandon has very mild (and I mean VERY mild) allergies to oak trees, cockroaches, and milk. I don't know too much about allergy testing, but obviously these indications won't mean too much for Brandon since his allergen range was so low. Oak trees...well can't avoid them in No

rthwest Ohio, cockroaches...none in this house nor anywhere I would like my child to be around, and milk...well let's just say he is allowed to keep drinking it. So all in all, can't say it was a bad visit. Got some helpful tips as to how to manage wheezing episodes, etc., especially during cold and flu season.

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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.