Surgery a success and life since then.
12 November 2016
Caleb's surgery was a success with the surgeon removing all he could see of the tumor. Caleb's recovery was amazing, he bypassed PICU, was out of HDU in 3 days and discharged 10 days post op to the Wilson Centre for more rehabilitation. We were there for 3 and a half weeks and back home to settle into our new lives.
It's been awhile since i updated on Caleb - mostly it's because life is very busy but a part of it, if I'm being honest, is because I'm so tired all the time i just don't have the emotional strength to recap on where life is at for us.
Caleb has progressed in leaps and bounds physically, play fighting with Noah, playing hide and seek, riding his scooter - tentatively, short supermarket trips, shooting hoops, he even put on his Karate Gee and threw punches at the bag.
As fantastic as that all is he has reached a plateau for now. His eyes are still causing some issues which effect balance at speed, perifial vision issues, the ability to look up is a big one - if he wants to catch a ball it must be thrown below his line of sight as he cannot look up to see it coming. We have the specialist in 10 days and will have a surgery date to hopefully correct 80% of this.
Caleb has visited school for some short periods and loved it! He was able to help set up for assembly, participate to a degree in fitness and take part in maths sessions which are his favourite. It was extremely fatiguing and he will have to learn over time when he needs to rest but for now, its so exciting to be there, adrenaline is helping him manage.
Eating and drinking have regressed again and there is a huge psychological barrier here which we are doing our best to hep him overcome. Caleb doesn't meet the criteria for help with this area through Speech and Language as its not a physical issue but an emotional/psychological one so we're on our own with this. We are trying not to let this hold him back from doing all the things a 'normal' kid would but if you are a praying person this would be where to direct those prayers.
Caleb has now reached the 500 club with his Beads of Courage which is quite a big deal for him - his newest favourite bead would be his hand crafted X-Box controller.
We're 3 months post surgery which means we're half way to the next MRI and with the brain having healed more and the swelling reduced we will be able to clearly see if for now the tumor has really all gone. There was a lot of residual blood showing on the last one so we could only be as sure as the surgeons own eyes.
Caleb's memory is going to be the biggest ongoing challenge. He had comprehensive nuero-phsych testing done in Auckland and the results showed us where most of the damage has been done. There are 4 parts to our memory; Processing, Sorting, Storage and Retrieval. Storage is working fine, retrieval of old memories is fine but new memories can require a trigger or a multi choice answer. Unfortunately his processing has been affected the most. He very quickly overloads and the information he has tried to process gets lost, muddled, sorted incorrectly or doesn't go in at all. This will mean he possibly won't ever attend school full-time as environment plays a big part in whether he can take in the information.
He is still dealing with very real pain in his legs which is triggered by emotion. If something is hard, frustrating or he can't find the words to say he needs help or needs out this manifests by a burning pain in his legs. The mind-body connection is so complex and leaves us feeling quite helpless as to how we are supposed to help him. Not being able to make it better is the worst feeling a parent could have, i wouldn't wish it on anyone.
To finish on a positive, Caleb had a wonderful 10th birthday, he was so spoilt but we couldn't think of a boy more deserving.
