I figured it was time for an update as it’s been a while since I reported on Chris. He has maintained his status quo: overall healthy, with his routine of therapies and daily one-on-one sessions with amazing Hillary – she is by the way his greatest advocate and works with him daily for an hour.

During last month Chris had family in town (his father spent 1 week with him), and Gabriel also spent an entire Saturday at the hospital with papai and grandpa. I post below the summary email of his stay with Chris.

“In my experience over the past week I have witnessed Chris drinking very well. He seems to enjoy cranberry juice, apple juice and water. there was no hesitation to his drinking, when he was thirsty, he drank. We acquired a new set of razors with enough spares to last several months, hopefully this will reduce the cuts he has sustained on his face. In my opinion, Chris positively responds to commands. He taps his foot on command, he reacts to his name on command and I was able to get him to nob his head for me, albeit not consistent. He also laughs and not always spontaneously. I was repairing his new discman player and he was watching me intently.... he saw that I was getting frustrated and began laughing at me, he knew I was getting angry and that I had little patience. Chris looks very good, I think he gained weight, he eats very well and while he has his up and down days, overall it was a great visit. George”

I also managed to go see him during work hours last week and yesterday, on both occasions for meetings with the Occupational Therapist + team and doctors.

On the OT front, H. is preparing a PCP (Person Centered Plan), which consists of a file written from Chris’ perspective about everything that is important to him, everything that matters to him, how he would like to be cared for, treated, handled, including his morning routine, his afternoons, his bath & hygiene times, etc. It states his values, likes, dislikes as a human being and tries to shed light into the person he was previously and the person he is today. So a small team spent time discussing and reviewing the file and the primary goal is that everyone involved on his care has an opportunity to read it so they understand how he would like to be cared and treated. I think this is a brilliant initiative if the team around him is able to learn more about him and respect his individual needs/ personality, to see the human soul and being underneath the damaged body. The goal ultimately is to improve the rapport and level of care for Chris.

The second meeting (yesterday with the doctors) was prompted in order to discuss options on addressing the continued spasticity and high tone Chris endures and all the problems that arise from this condition (including a lot of pain for Chris – I am convinced of that). It is so disheartening to see him like that – but looking at his arms breaks my heart in ways no one can imagine.

To make a long session short: (i) the doctor will try new medication, (ii) W. will follow up on the phenol injections request we put forth a while ago (Botox does not work for Chris anymore), (iii) the baclofen pump option was again archived.

Doctors in the UK are so adamantly opposed to the Baclofen pump (which they reckon is indeed most commonly used in the USA); nonetheless I was finally convinced of retiring the idea because it was pointed out to me that because this was a procedure not commonly carried out, it would be hard to find a specialist to do the procedure, and hard to monitor, and finally the kiss of death: in case of any complications arising from it, most hospitals would not even be knowledgeable enough to handle it. That plus the 1000 risks associated with it finally convinced me that just sometimes I should listen to what the doctors say.

Last but not least, I got the doctors to agree on starting RMNS (Right Median Nerve Stimulator) for Chris. As soon as I get the necessary equipment, I will post specifically on this new therapy we are going to start for Chris.

My life continues to be hectic. The fact that Gabriel is mostly with a nanny KILLS me. I know many parents also juggle childcare and work. But Gabriel does not have a father, grandparents, siblings, cousins, or aunts nearby. Right now I am actually not 100% settled with babysitting arrangements so there is a bit of mental stress until I sort things out. The fact that I travel for work during the week complicates things so immensely because then I need to figure out a way of finding someone who drops him off at school at 8 AM – while I am gone to an airport or eurostar at 6 AM in the morning. I have two trips coming in the next weeks and I am trying to figure out whom I am going to ask this time around… I am sure I will figure it out but it was so much easier when I had my parents around… So far I have managed to go for day-trips only. If some longer-haul trips pop-up, I have no clue what I am going to do with Gabriel…

Maybe everything would be simply resolved if I just got laid off like the rest of the financial industry – that way I can take care of Gabriel all day long and do not have to worry about my work travel… Sorry, just some twisted humor before logging off and going to bed. Thanks from the bottom of our hearts for checking on us. We are all managing with what we got.

PS – I have my two best friends from Brazil arriving tomorrow in London for a week with us so I am super super excited about that!