Welcome to the Spanish medical service where every hour you never know what to expect! jaja.
A tiring day today…ready for bed already today as Leo was up since 4am trying to scratch his head where the stitches were and pull the feeding tube from out of his nose again! I am guessing it must be so itchy after having the stitches removed and then new hair growing and he cannot scratch it!
So this morning the physiotherapist came to visit Leo to do her normal routine with him. I was asking her about hot springs to help aid the recovery process but I got the impression she does not agree with natural remedies as she told me that everything Leo needs needs to be done with physio. Each to their own I guess.
I asked her if Leo would need a special bed, chair etc and she said that it is impossible to say as he is progressing so quickly and we need to wait until he is released to see what he will need,which makes sense. An hour later the nurse comes in and tells us that someone from the social security services will be here tomorrow morning to talk to us about what Leo needs and the special equipment if necessary so they can order it. ….so lets just see what happens tomorrow!
The doctor came in and told me he had the results of Leos tests. He looked very serious. He told me his hearing is perfect but the sight/vision test came back as 0 meaning that Leo cannot see anything,the results were that he was blind. He told me that he didn´t think that Leo could even see shadows or colours….. Nothing at all. I told him that Leo hits my hand and he said that he must follow my voice but I told him that he does it when I don´t speak and I am sure he did not believe me. I got Leo to do the ´high five´ with me while he was there and I didn´t speak and Leo hit my hand each time…..the doctor was still not convinced after seeing it live…I couldn´t do anything more. He sees Leo for about 5 minutes every 2 days. He does not even speak to Leo or do any additional tests with him, he depends on the ´Official Test Results´ which is what Leos pediatrician also did and look where we ended up…so go figure..
We know, and the nurses who see Leo on a regular basis all know that Leo can see something, we are not sure how much exactly but for sure more than shadows. The doctor said he can repeat the test in a week or so. He said it could take months or years for his eyesight to come back if at all……we were trying very hard to not let us get it down and in the words again of my wise wise little brother ´Leo has done everything that the doctors say he wouldn´t, so just take what they say with a pinch of salt, Leo is coming back and you know it´
If we believed everything the doctors said and took it to heart then I am sure myself and Jorge would be in a mental institute by now as it would have driven us crazy…we know how Leo is progressing…forget about the tests!
The next visitor was the neurosurgeon….firstly he began with saying how it literally was like a miracle when he saw Leos brain scan. He said that it looks like he had a new brain as it was recovering so well. He then went on to say that as the tumour was ´immature´ it meant that it could regrow back in the same place as the old one in the future. If it was a ´mature´ tumour then once it is removed then there would be no chance of it returning, but unfortunately it wasn´t. The neurosurgeon had been speaking with the radiotherapist and they are deciding whether it is better as a precaution for Leo to have some radiotherapy. I said to him is it dangerous for young kids to have this and he said no as long as it is localised on one specific spot which it would be. I will need to do some more internet research on that.
We had another visit from someone from the association who said that Leo is basically like a newborn baby again (just a big one). The first thing the babies learn is movement, then swallowing, talking, walking etc……so we have a big newborn baby on our hands now! She had not been to visit in a week and could not believe the progress he has made. Thank god I don´t have to do breastfeeding again…that would kill with those teeth he has!
Then finally we had some friends visit, as well as one of Leos friends with his parents who made a beautiful poster for Leo and bought Leo some lovely gifts! We will need to buy an additional bed for all these beautiful cuddly toys of Leos.
Oh I nearly forgot in the middle of night I could see Leo moving his right arm and leg…I jumped out of bed to check. I was not dreaming and he was moving them. I grabbed my phone to take a video as I was sure nobody would believe me…but I was too slow for the video. When he was awake he wasn´t moving them anymore. We asked the neurosurgeon about this and he said when he is asleep is not conscious or thinking or conducting his movements and its a very good sign that he could move the right side. So all Leo needs to do is to find that connection in the brain to control those movements himself when he is awake….next mission for the Lion!
Pheewww…so much has happened today..all typed out. Leo just chilling with his neck pillow courtesy of Primark! jaja