Tuesday, December 09, 2008

Did you think you were going to need to make a trip to Apalachicola to see what Wes is up to? LOL!! Yes, it has been awhile. This is going to be a long update, first a quick medical run down. Wes still has a lingering sinus infection. At this point, I have lost count of how many days he has been on antibiotics. Antibiotics have been a constant for Wes since he was born, but with this sinus infection he has cycled through many 20 day rounds of strong antibiotics without much change. He is now trying a lower daily preventive dose. His ENT in Tallahassee has referred him back to Shands to Dr. Collins, ped ENT. He would like to consider surgical options and has scheduled a stealth CT scan for Dec 19.

Wes has added another doctor to his list, Dr. Wagner, a pulmunolgist at Shands. Dr. Bowman, neurosurgeon, wants Wes followed because of a craniocervical junction defect. (three times fast) Yes, you know my little man has to keep the doctors on their toes. Dr. Bowman’s explanation, “Wes has a very UNIQUE head!” Little background infomation, Wes' midline defect includes a craniocervical junction defect at the base of his skull (similar to Chiari Malformation) and neck instability. Quick explanation, bones in the middle of his head formed in angels that leave little room for the rear portion of his brain and brain stem. This area controls breathing and swallowing, so there is some alarm considering he has aspirated without clear explanation and his breathing has always been an issue. This will be something I will need to monitor, which should be easy considering I will be worrying rather than sleeping deeply. Overall Wes had a good appointment and Dr. Wagner will follow him in 8 months.

Three weeks ago, we stopped all g-tube feeds. He has loved the freedom of no hook ups! He has also discovered chocolate. His weight has dropped a little, but hopefully with time to adjust this will change.

Last month Wes had a cortisol and growth hormone stimulation test. His cortisol levels were normal. He failed the stimulation test with significantly low levels. He needed an 11 to pass and Wes' level never made it to 3. Now we wait for Dr. Miller, ped endocrinologist, and Dr. Bowman, neurosurgeon, to discuss starting Wes on growth hormone. Typically growth hormone is associated with height only, when it actually can affect much more, ie stamina, sugar levels, muscle tone, reflux, resistance, overall well being, increase risk of seizure…this is not one of those medication that come in bubble gum or grape flavoring, instead it is shot given every night. As much as I hate the idea of daily shots, we will do what is best for Wes.

Wes has also seen the ophthalmologist recently, who would like to consider surgery to move his null point in six months. Basically Wes’ null point is the point of best vision. This is why Wes often holds his head chin down or tilts his head to the right. Before making any decisions, I feel we need to explore a surgery that would both move his null point and dampen his nystagmus. Of course there are very few doctors in the US who perform this surgery and most ophthalmologist are not familiar with this surgery or the positive outcomes. Wes’ local ophthalmologist does not perform this surgery and discourages seeking any info on this surgery. Dr. Hertle in Pittsburg appears to be an expert. With everything Wes has faced, exploring the surgery options has not been a focus, but one surgery is optimal, so this must now become a priority.

Now for the fun!!!! November, we were able to take a much overdue family vacation to Disney World in Orlando with our family, my mom, brother, sister in law, Taylor and cousin and family. “To infinity and beyond”, sounds so sweet from my pint size super hero. He absolutely loves dressing up as Buzz Lightyear. He felt completely different about meeting Buzz Lightyear at Disney. As a matter of fact, he screamed in fear at every character that moved and was taller than 1 foot. To make sure Wes and Taylor did not want to be near the characters, we paid for an overpriced breakfast with Mickey, Pluto, Lilo, and Stitch. They were not able to eat much breakfast, as there is really no way to make sure these characters kept a safe distance if you are distracted by food. Chase and Brandon were able to eat and loved hanging out with Stitch. Brandon even brought home a Stitch to sleep with.

The boys enjoyed every moment of the trip and believe me we packed the day full. Who ever thought vacations meant restful days, have never taken children to Disney. My body may have been dragging, but my heart was recharged and my stomach well churned. All from good combination of Space Mountain, Playhouse Disney, Mission to Space, Buzz Lightyear Space Ranger, Mountain Everest, It‘s a Small World…We basically did everything! Family favorites, Chase and Brandon liked Space Mountain, and Wes liked Buzz Lightyear rides. I loved every moment!

Pulling up to the hotel, I almost could not contain my tears. The boys could not have understood how special this trip was for me, for our family. Our journey over the past few years have brought challenges that have weighed my mind and heart with fear and doubt. There were moments when I doubted a trip like this would have ever been possible. Yet, there we stood with a little guy who does not let anything get in his way of having FUN and loving life. Everyday, no matter the challenge, my little man gets up and puts on his superhero smile. Someday I will let him know he has been mommy’s little superhero. I have been blessed with 3. Seemingly unchanged it is through different eyes I now see the gift of love my life has been blessed with.