|Wyatt and his corn that he grew this year. He is so proud!|
Where did it all begin? Wyatt is the type of little boy that has the potential of falling through the cracks. I am so proud of the progress he has made. He enjoys sports and wants to play everything. He enjoys school and is doing great! He likes to read and enjoyed math and science this year. Cognitively, he is just like any other first grader. He is social and makes friends easily and he can carry a great conversation with adults. He has a great sense of humor too! I am sooooo grateful for all of that, but as a Mom, I am the person to look after ALL of him.... he still needs medical care to help him grow and thrive. He uses oxygen while sleeping, feeding tube to help hydrate and maintain his weight, and extra care during physical activities to help with balance and endurance. He still coughs/gags while eating b/c of his paralyzed vocal cord. He is still extremely sensitive to noise too. We don't make this a focus and treat Wyatt like any other soon to be seven year old, but his family is also the only people to make sure he can reach his greatest potential.
The MRI showed that Wyatt has Chiari Malformation and Syringomyleia - http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm . The PA came into the waiting room and pulled up a chair next to us to explain everything (I knew something was wrong) She said that Wyatt's brain is a little large for his skull causing the cerebellum to protrude outward. The opening into the spine is too narrow causing the spinal fluid to collect in his brain and spine. The next day, she called to share the shunt test results, telling us the tubing is too short and that it's clogged. She said that the neurosurgeon would like to meet with us in his office after the weekend to discuss next steps. Benji and I sat down with him at his desk on that following Monday and he was very informative. He took his time with us to explain the MRI in detail and answered all our questions. After talking with the lady who schedules surgery, our only option was to schedule surgery on Aug. 13th, right in the middle of our Hilton Head vacation. There was no choice but to for go our vacation. We felt bad since the kids were looking forward to go on vacation with just the four of us. It's been three years since the four of us went away together so we went on a short beach trip from Sun-Tues to the beach and they were happy with it and we had a great time! We also cancelled Chloe's art camp the week before because it was too much to try to go to Wyatt's appointments and take Chloe back and forth. She didn't mind that either. Taking her along to Wyatt's appointments helps lesson the stress. She makes Wyatt laugh and is truly his best medicine. Chloe is a little miracle for Wyatt. Chloe was so excited we would be on vacation for her 8th birthday, instead, we will be at a hospital. Kids are bouncy balls and the past two weeks showed us the importance of being flexible!
I feel a little relieved about this diagnosis. It explains so much that I could never really put my finger on. The cerebellum affects balance and Wyatt has major issues with balance. He can not walk on the balance beam and is not always steady on his feet. It also causes nystigmus (eye wiggling), which Wyatt has had since he was an infant. It causes scoliosis which Wyatt has. It causes headaches during activity which he gets and muscle weakness. The surgery will help Wyatt have a better quality of life and will either stabilize his symptoms or improve them. In addition to the Chiari Malformaiton, the Syringomyleia (fluid in the spine) could damage the nerves in the spine.
The doctor told us it's major brain surgery, but routine and that he just completed a CM surgery last week. We were also told that it's a painful surgery because they have to cut through muscle and bone.
The outpouring of support from family and friends is truly overwhelming and we are forever grateful. Please pray for a rapid recovery and a smooth surgery. I pray that Wyatt turns a corner after this and will be able to do whatever he sets his mind on doing!!
Here is a few pics of Wyatt over the years!
|Just yesterday at the beach!|
|Years of physical therapy a|
|Just a few days old on ECMO|
|Wyatt and his Great Grandmom Ada |
Can't forget about his sister Chloe (2010-2011)
Chloe in 2014