A Little Blessing: 19 Month Update

Sunday, October 4, 2009

19 Month Update

We finally took advantage of the referral to Help Me Grow. I felt I was already well linked in the community so I declined services through Help Me Grow at first, but after hearing more about the services they offer we have decided to give it a try. Any child with a qualifying medical diagnosis can receive free services through Help Me Grow until the age of 3. This is a state funded service. So far I have just met with the intake person, but soon will have a service coordinator assigned to us. Help Me Grow has several early intervention specialists who do home visits to monitor growth and development. More updates to come as we journey forward.

We are starting to see some results from the Growth Hormone shots. Brandon is getting taller and has finally hit the 20 pound mark. I don't think I notice his growth as much since I am around him all the time, but extended family members and friends are the first to remark. He is doing so well. No tears or fussing from the injections. Brandon knows when it's time for his nightly shot and just lays on his belly and waits for it. We have found that the back of his hip area is the least painful for him. Such a little trooper.

Within the last couple weeks Brandon has made remarkable progress with his speech. Several words may not sound "correct", but he is making an attempt and we tend to know what he is trying to say. Some examples of words he is saying...Momma, ga-ga = Da Da, Awna = Breanna, ile = Kyle, ball, gog =dog, elly = belly, uh-oh, no, owww = ouch, mine, bye, hi, bubba, more, and bite.

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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.