A Little Blessing: March 2013

Friday, March 15, 2013

5 Year Update

So we have hit our 5 year mark and it is quite surreal to me. Time flies by so fast. Brandon remains a very active little guy. He has played various sports, the newest being wrestling. Unfortunately Brandon has added a new scar to his face (not surgery related) after an unfortunate accident involving the kids playing golf outside. He handled this like a champ as he has with everything else. Every day he continues to amaze me. He continues his growth hormone injections daily and is making good progress with his growth and development. We continue to follow the Ear Nose and Throat Doctor after his second set of tubes had been put in. Looks like we may be visiting the eye doctor again shortly as we are questioning some vision concerns. He is getting ready to start kindergarten in the fall so his preschool is getting ready to test him again so he can remain on an IEP in kindergarten and continue with speech and occupational therapy services. No new scheduled surgeries at this time.

This is going to leave another scar :(

Taking it like a champ!

Halloween 2012 - Brandon as Handy Smurf bottom right corner

First wrestling weigh in 38#

Super happy after his first tournament with several wins :)

Daycare friends celebrating Brandon's 5th Birthday

5 Years Old

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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.