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 Northwest 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.

Dr. Appointment in Cincinnati

On Friday, July 23rd, we headed down to Cincinnati, OH to visit a geneticist that came very highly recommended to me. In my field of work, the doctors have referred many children to genetic specialists to confirm or rule out various genetic disorders/syndromes. Since many things with Brandon appear to be a "medical mystery" to many of his doctors, and there has still been no clear answer as to why Brandon has some unusual physical features, I decided to take Brandon to see Dr. Hopkin, a genetic specialist, to see if we could get some answers. I love Brandon with all my heart and do not NEED to know any official diagnosis for why he has certain features, but being a developmental pediatric nurse I understand the benefits to research, and also how sometimes finding out more information can help parents help their children. As Brandon continues to grow and develop, I want to be able to provide him with any resources he might need to make his journey easier and more prosperous. This visit was just one more step in that process...

After a 3 1/2 hour drive we finally arrived...Brandon was acting silly in the waiting room.

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.

Finding ways to pass the time...

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.

A little R&R after a long day. We decided it would be best to stay in a hotel that night and drive home the next day.

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.

Our annual trip up north

Every year, for the past seven years or so, we take a trip up north to Gaylord, MI for a little summer vacation. My family, my siblings and their families, and my parents all stay together in a large cabin that sleeps about 12-14 people. The guys like to golf, the girls like to shop, and the kids like to swim and play on the water slide. Each year is a little different; because as the kids get older, it becomes a new adventure...you never know what to expect. This year, Brandon had a blast, but experienced many time outs as he continues to express his 2 year old will power. All in all, we had a great time and made some more great memories.

And the golfing begins...

He insisted we bring along his bike ;)

Swim time with mommy...

What a little stud!

Hot tub time!

Ice cream at Mooney's...yum!

Off to see the Elk

Feeding the Elk

Another trip to the hospital...

So...Brandon spiked a fever on a Thursday night a little over a week ago. By Saturday he was at the doctor's office with what looked liked the beginning stages of an ear infection. Antibiotics were started, but by his third dose of the antibiotic, along with alternating Motrin and Tylenol, the following day his fever would not let up and he was refusing to eat all day. We ended up taking him to the ER on Sunday afternoon. All the tests came back normal so the ER doctor sent us home after Brandon had received some IV fluids. His fever continued for a few more days. Extremely worried at this point, I called his primary pediatrician who wanted to see him. Brandon had lost two pounds in two weeks and was still not eating well. He did nothing but moan in my arms the whole time we were at the doctor's office, for those who don't know Brandon well...this is very unusual for him. After his doctor took a look at him it was recommended Brandon be admitted to the hospital. We spent nearly 24 hours at St. V's where he received IV fluids to help his little body fight off this nasty virus. Luckily, no spinal tap was needed this time. Turns out Brandon had enterovirus, which is a common summer virus. The physician said without the help of the IV fluids, Brandon could have endured another 3-4 days in his uncomfortable state.

ER visit

Resting after being admitted to the hospital.

Visiting the aquarium as we pass the time in the hospital.


Thumbs up by Brandon...he is finally starting to feel better.

On our way home to rest...

A little over a week later and he is back to normal...Enjoying the day watching the parade on Father's Day.

Parade Day!

First of ten suckers throughout the parade...each had a few licks only because every time he was thrown a new sucker he wanted to trade his in :)

Such a big boy. So happy he is back to himself!

Take me out to the ball game...

After a busy week including two doctor's appointments, we ended the week with some fun at the Mud Hens game. I'm pleased to report that the orthopedic doctor has evaluated Brandon's bone structure and has informed us that his bones look great! Aside from Brandon being small in stature, his bones are healthy, proportional, and developing appropriately. One of the concerns with Brandon since birth was for possible dwarfism. At this point Brandon has NOT been diagnosed with any form of dwarfism . He will continue receiving his nightly shots for his growth hormone deficiency and continue scheduled follow up appointments with his specialists to monitor his growth and development. Now... if we could just get the upper respiratory/wheezing issues resolved. :)