Photo Updates Fall 2011

Halloween 2011

I had so much fun working on the dwarf costumes this year. It was hilarious watching all of the kids (my son, nieces, nephews, and friend's kids) follow my daughter around for trick or treating. Brandon was "Happy" this year. Hopefully next year I can think of something equally cute! :)

Farewell Miss Nicole...

Tonight we had to say goodbye to Brandon's speech therapist. It was bitter-sweet. She has been amazing with Brandon and will be missed greatly, but we are happy for her as she moves on to new opportunities. We hope to see you again sometime. :)

Cleft Clinic 2011

This year's visit to cleft clinic was not too eventful. Still no plans for another surgery until he is between 7 and 10 years of age. Recommendations given: continue intense speech therapy.

Soccer time...

To say that Brandon is a sports fanatic is an understatement. I can honestly say I have never seen such young child so in love with sports...any sport. He is not a TV watcher unless ESPN highlights are on or daddy is watching a sporting event. When football is on he goes to get his helmet and football to wear and play with as he watches the game. When baseball is on he gets his bat and ball and practices...same goes for basketball. Friends of ours understand why we have a basketball hoop in the living room. Soccer is no exception. At his age, this is about all we can get him signed up for as far as team sports. It's a great start and today was his first game. He is definitely a little "go-getter" :)

Finally Started Speech Therapy!

This has been quite the process. I was told to wait until he was three before we began speech therapy (ST). I asked his pediatrician for an order for a speech and language eval in March at Brandon's well visit. I wasn't able to get in for his evalution until the end of May. (Word of advice...keep calling. They told me I would be on a wait list, but never called me. Once I called them after about 4 weeks, they said "oh sure, we can get you scheduled".) So the initial evaluation took two sessions. I was told again I would be put on a wait list to have him begin therapy. Six weeks later I called asking how much longer, and again they said "oh sure, we can get you scheduled now". That's why I tell you, call...call...call if you need to. Don't rely on the rehab center to contact you right away since they have such a high volume of kids they see. Another obstacle I faced was I received a bill for $408.00 for his initial speech evaluation...yep $408.00!!! They claimed my insurance wouldn't cover this service. Lucky for me I do these kind of referrals in the office I work at for a living, I knew it was a matter of getting his primary care doctor to change his diagnosis so the insurance company would cover it. Insurance companies hate the diagnosis "developmental delays or expressive language delay"...FYI "apraxia" works much better. So anyways, it turns out that Brandon's speech therapist is related to his preschool teacher (mother/daughter). Yeah! They are both so awesome, I feel so blessed he has such great people working with him. We have had two visits so far. Brandon is really enjoying it. One thing we are noticing is that he loses quite a bit of air when saying certain sounds, (i.e. "sss" sounds). He struggled to blow air through a straw as the air instead comes out of his nose. I plan to discuss this with his plastic surgeon next month at cleft clinic to see if this mechanical problem is due to a structural problem with his palate that hasn't been fully repaired yet or if it's just going to take quite a bit of practice to get him used to maneuvering his tongue in his mouth to form proper sounds. Regardless, we are on the right path! I tried getting Brandon to count to 10 and sing a song so you can hear how he sounds. His attention span was not the greatest, but I'll try to post something else later. Best I can do for now, and by the way if anyone knows how I can get the video to show without being a "side view" please feel free to share...this is new for me :)

Random Pictures...I just love his smile!!

Kalahari Weekend

Happy Easter! 2011

Easter morning with my little man. Brief update...Brandon's speech has improved tremendously since starting preschool. He is putting sentences together, and although we don't always understand everything he says, he gets an A+ for effort. Hearing him sing "Inkle Inkle" (aka Twinkle Twinkle Little Star) melts my heart. Blessings to everyone.

First Day of Preschool

Today was Brandon's first day of preschool. He qualified for special needs preschool and is now on an IEP at school. Brandon qualified for special needs preschool due to speech and fine motor delay. He will be receiving occupational and speech therapy. He attends daycare in the morning and then the bus picks him up in the afternoon for class. Such a big boy! Special thanks to the daycare workers for taking pictures of this milestone!

All ready to go...

Waiting for it to be time to walk out to catch the bus.



Taking a picture with Miss Amy. She was one of the first daycare workers to care for Brandon. He was just 4 weeks old when she met him. Time has gone by so fast.

Brandon's classmate and bus buddy Maddie!

There's the bus...

All aboard!

Painting at school. A special thank you to Brandon's teacher, Ms. Bass, for surprising me with this picture.

Happy 3rd Birthday!!!

Last day at daycare for the week before his birthday...so proud of his birthday sign.

Birthday morning...opening his present.

Practicing his pitching...look at that form :)

Trying out his new toy...

Lunch with mom and dad. The waiter brought out a special birthday sundae.

Party at Frickers Sports Bar...Picture of Brandon setting eyes on his birthday cake for the first time...Loved it! Special thanks to my brother Jon and to Shelly for making such an amazing cake.

Making a wish!

So proud of my little man and how much he has accomplished so far in life. He is so amazing and I look forward to watching him grow and learn more every day.

Another trip to Cincinnati: Division of Human Genetics

On January 28th, 2011 we traveled back to Cincinnati, OH to see Dr. Hopkin, a genetics specialist at Cincinnati Children's Hospital. Since our last visit there, we had done a number of genetic blood tests on Brandon and on this day we got to review the findings with the doctor. As it turns out all of Brandon's blood tests came back "normal". In my mind this is great news, however genetic studies are not 100% accurate. What I found out though is, even though genetic studies may not be diagnostic, a person can still receive a "clinical" diagnosis if they exhibit many of the same characteristics. After a detailed discussion with the doctor it was decided that Brandon meets criteria for a clinical diagnosis of Aarskog Syndrome. They will further investigate and study other conditions that could overlap with this particular syndrome, but at this time he will have the Aarskog diagnosis unless an alternate diagnosis is found to be more appropriate. What does this mean? The important part I took away from this is that Brandon is "at risk" of learning difficulties and attention problems as he gets older. In light of this information and in addition to Brandon's speech issues, it is more important than ever to make sure he gets linked well in the school system and receives appropriate services. Help Me Grow has been fantastic in preparing us for this and Brandon was evaluated for special needs preschool and has qualified. He is currently on an IEP and will start preschool on March 7th where he will receive speech and occupational therapy to help him progress developmentally. Because there are different types of Aarskog, we are unsure exactly what this will mean as far as Brandon passing any genetic conditions on to his children. I will say this...Brandon has been an amazing boy and if his kids are anything like him we will all be lucky :)