A Little Blessing
This is my journey...
Tuesday, December 28, 2010
Monday, December 13, 2010
Sunday, October 31, 2010
Thursday, September 16, 2010
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.
Sunday, July 25, 2010
Thumbs up...so far so good. Brandon was in great spirits and did very well considering the long drive and lengthy visit.
Playing with mommy as we wait in the exam room.
The doctor came in shortly after Brandon was hiding in the cabinet. Dr. Hopkin was so friendly. He greeted Brandon and kneeled down to listen to his heart and check him out as Brandon continued sitting inside the cabinet.
So...here's what we know so far. After the doctor had reviewed Brandon's history he thought of a syndrome called Opitz syndrome. He thought Brandon might qualify for this based on his reported features. After having laid eyes on Brandon, the doctor said he was shifting his thoughts towards a different syndrome called Aarskog syndrome. Brandon has very short, pudgy fingers and toes, in addition to other features which are present in this particular syndrome. Cleft lip and palate are sometimes associated with syndromes and sometimes not. Nothing has been decided. The doctor took some pictures of Brandon and will meet with his team to share and discuss further. Afterwards he will order an extensive genetic blood test to see if any specific markers show up. It is possible Brandon has one of these suspected syndromes or none. It is also possible he has something that has not yet been discovered. Regardless, those findings are more beneficial for the genetics team and their research. Whatever the outcome, it won't change who our little guy is. I love EVERYTHING about him, including his pudgy, short fingers and toes. We will continue to love, talk, read, and play with him daily...stimulating him developmentally.
Saturday, July 3, 2010
Friday, June 18, 2010
Resting after being admitted to the hospital.
Thumbs up by Brandon...he is finally starting to feel better.
Sunday, April 25, 2010
Thursday, April 15, 2010
As Brandon gets older, there isn’t as much new information to report regarding his cleft repairs; hence the lack of frequent status updates. I'm happy to share some additional updates though as to how Brandon is growing, developing, etc. Honestly, I see him as just any other little boy...with the exception that...he is still very little. At our last appointment with the endocrinologist, the doctor indicated that Brandon may not be responding to his growth hormone injections as well as they hoped, or he is resistant to the growth hormone. In light of that, Brandon's medication dose has been increased and we have an appointment next week with his orthopedic doctor to further evaluate his bone growth. I love that he is so little; it's very cute from a mom's perspective...but I do realize that he is a boy that will want to be bigger as he gets older. Only time will tell. We did hit a milestone this week by moving up to size 5 in shoes! In regards to Brandon’s other developments, his daycare is working with him on drinking out of a normal cup. They are also in the beginning stages of introducing potty training...OH BOY! He still has some snot/food coming out of his nose as he eats and we’re hoping to have that resolved at his next surgery when he gets his bone grafts done. However, this surgery, won't be until he is closer to 7 years of age. Brandon has made great strides in his speech development! He is saying more and more words every day. Some words are becoming much clearer and used more frequently (i.e. "No", "Stop", "Go" as well as many others), and he is also starting to express his 2 year old "attitude" lately. Regardless, there is never a day where he doesn't make me laugh and smile. He truly is a blessing!
Lastly, as I was reading some of the other blogs I follow; it brought back some memories that I wanted to share. I started this blog about Brandon's journey in an effort to reach out to others. In my personal experience as a parent of a child born with a cleft, the cleft does not define my child. It's actually amazing how quickly it becomes so "normal" for you. Sure, there are reminders when it comes to feedings and the excessive doctor's appointments, but overall, Brandon’s cleft was easily accepted by me and my family. His cleft is not something that is "an issue" in our day to day living. At times, I would forget that others who may have never seen Brandon before would be a little surprised when they took their first glance after he was born, but overall most people were very understanding and accepting. Anyone who has spent any time with Brandon knows that his personality and good nature is what draws you towards him. You can't help but fall in love with the little guy. Brandon's cleft was so familiar to me that after he had his first surgery and I laid eyes on him for the first time I cried. Seeing him so swollen with stitches made my heart hurt for him. I missed his old smile, but quickly fell in love with the new one. As a parent though, even though you love your child just as they are, you still have this part of you that feels the need to protect your child from the ignorant people in the world. I can only recall one negative comment made to me since Brandon's been born that I just couldn't forget. Brandon was 4 weeks old and I took him with me to a funeral (a funeral of an infant none-the-less). In the lobby a woman waived to me across the way. I smiled at her and she proceeded to come over in my direction to say hello. Apparently she knew who I was, but I did not recall who she was. I just figured maybe she knew my parents. As she approached me she was asking me "How are you? Is this your baby?" (keep in mind at this point, I was holding Brandon and his face was turned away from her). She walked around to take a look at him and immediately gasped quietly and said "Are you going to get that fixed?” I have to tell you, it is probably a good thing that at that particular moment the only word that could come out of my mouth before she walked away was "yes". In usual circumstances, my tongue is quick to make a tactful, yet crisp, reply. In this circumstance though, I was completely dumbfounded and shocked into silence that this woman would actually say that to me. Although her comment was hurtful it taught me a lesson on how to respond to others when they ask (or rudely comment) about Brandon’s condition. I am much more prepared now at how to respond in situations like that. I share this not to put down the woman who made this hurtful comment, but to bring awareness to others that words can hurt despite how much you have accepted something. The world can be very cruel sometimes and all I can do is teach my kids to accept people regardless of their differences.