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.
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.