A little collage for people who have not met Leo in person. You can see more of the cheeky little monkey you are helping with all of your generosity as well as the incredible brotherly / sisterly bond in the photos between him and Sofia. x
All things still good today on the Leo front….the neurosurgeon was happy with Leos progress. Tomorrow is the last day of his antibiotics and then they will do a blood test to check that the septicaemia has all gone from his body. Fingers and toes crossed for that.
Tomorrow Leo will also have a hearing and sight test to see if those senses have been affected from the brain intervention. We know for sure that he can hear us, and his eyes are becoming more focused little by little but we are still not quite sure what he can actually see if it is just shapes, colours or everything!
The physiotherapist also visited Leo and has given us some exercises to do with him to strengthen his muscles. His legs and feet have gone very thin as he has been in bed for nearly a month now which is normal.
Someone from the association brought some toys for Leo which he loves but hes getting frustrated when he cannot grab them, this will be the big problem we think with his recovery. Leo is very head strong like his mama and he will get very frustrated when he cannot do something that he wants to do….but determination is always a good thing, I guess….´Keep trying until you succeed´.
Leos bandage came off by accident today so I finally got to see his head, I was very nervous what to expect but it looks really good considering. The surgeons did have to cut a huge opening to remove the tumour but it all looks good and healing well, the staples have been removed and the stitches will come out on their own.
There will be a new ´Leo the Lion´ hairstyle in fashion soon that Leo will be sporting around with one half long and the other side short. lol.
We asked the doc how long he would need to stay in hospital and they have said for at least another 2 weeks as he needs to be sitting up and eating etc…and its better to stay a bit longer to be safe than sorry.
Also for all of you Manxies over there some of my very good friends have organized a ´Love,Play and Have a Good Day for Leo´ on Saturday 7th November at St.Peters Church,Onchan. (Details are on facebook) There will be afternoon tea, children´s activities, face painting, craft table, raffle and a table top sale for the grown ups. The proceeds will be going towards Leos rehab, so for all of the Isle of Man gang put this date in your diary.
I am cheating a little bit today and copying and pasting what I had put on a facebook earlier as it is something for everyone to really think about if they think they have a bad day…
Who would still manage to pull off such a beautiful smile after going through all of this?
* Finding out you had a 8 X 9.5cm brain tumour that could be cancerous,when you expected to be given antibiotics by the doctor.
* Undergoing a 6 hour life or death brain operation to remove it after having severe convulsions.
* Developing septicemia which attacked your liver and lungs.
*Being told that you had hours to live and your family had to wait for you to die and there was nothing any of the doctors could do.
*Being told that you could be blind.
*Being told the inflammation on the other side of your brain could be more cancer.
*Being told that you had acute respiratory syndrome and you had to go onto an artificial breathing machine or your lungs would fail in hours and you would die.
*Being poked and prodded ALL over your body more times than you can remember.
*To not have strength in your right side and to find out you will need months or years of rehab to recuperate.
*To still have inflammation on your head 2.5 weeks after operation due to brain fluid still leaking out.
*Being told the survival rate is 50% only with the lung syndrome alone.
….Of course you guessed it.. ..
“Leo the Lion” is the only person that could still pull off a smile after all this pain and suffering. ..and still look good wearing a head bandage.
Another positive day today… (Another smiling photo)
First for the Thank You’s (I apologize if I miss anyone out)
Mikeila and crew at Jets bar in Villaricos for raising such a substantial amount of money for Leo in such a short space of time….incredible…amazing….
Thank you Floor and family at La Cantina, Garrucha for the amazing food….. a million times better than hospital food or Mcdonalds.
‘Kikos’ mum for organizing collection pots around the area.
Some of the neighbours here at Cala Marques that have been so supportive with helping look after Sofia, supporting us and also more than generous donations for Leos recovery. We really appreciate everything. With everyone’s generosity the normal Leo will be back no time after all the rehab we can get him….:)
Thank you to other people that have donated money for Leo on the website, it is still so overwelming…every little bit counts.
Soon there will be a sponsored golf outing, a Zumba event, a sponsored walk from Villaricos to Carboneras, a raffle all in the aid of Leo the lion. Thank you everyone so much for all the support. We could not remain so strong through all of this without all of this support.
Another positive from this time of my life is that we have made new friends, and people who really will be friends for life no matter what through thick and thin. That is one big positive I can take from all of this.
So today I spent time with Sofia as my car was being serviced. I went to collect Sofia at school at 2pm and the support from other mothers was overwelming…I was trying very hard to hold my tears inside…..but I managed to.
Jorge said Leo had a good day, someone from the association brought him some toys and he was getting frustrated that he could not hold them in his hand…but this will come with time.
Leo had no fever and was crying every time a nurse or doctor spoke to him, I think now that he is fully aware that he associates the nurses and doctors with pain. lol…the amount of times they have poked and prodded him he can remember which is a good thing…. normal I guess.
This week the doctors will do a hearing and sight test on him..so we will see what the results of that are..
Also tomorrow the physiotherapist will speak with us about how to do various exercises with Leo in order to rebuild his muscles…everyday counts now…
His legs have gone very very skinny on the calves which apparently is normal when you are not using those muscles.
All in all a good day…. I think we are on 4 or 5 good days in a row…..fingers crossed it continues in this manner….
Today another good day..another step forward…my goal from now on is to try and get a photo of Leo smiling everyday from now on as a daily rule.
This morning we had a shock when we were advised that Leo was moving out of intensive care back to the normal ward within the next 20 minutes…..it was a bit of a rush to get the room ready and stuff packed from the old room but we managed it.
This was the third time that Leo had come back to the normal ward after returning to Intensive care three times previously…..this was it….third time lucky…he was going to be as good as new this time. I was more positive than ever this time.
So Leo is back now on the Oncology ward, the doctors have said the infection has nearly gone and he just needs to finish the course of antibiotics. Now it really is all about rehabilitation… and getting him back to the normal cheeky little monkey he was in the shortest time possible.
Leo was full of smiles and again nearly did a little giggle again….it was a good sign that he remembered his sister Sofia when she sang to him and he burst into tears when my dad spoke to him on the loud speaker…..he was still in there somewhere for sure.
The nurses were all so happy to see Leo back and so shocked at the progress he has made in such a short time…he really is an inspiration to so many people.
There was a comment today about how we should have spent more time in the Intensive care with Leo when he was there, this did upset myself and Jorge a bit as we visited Leo everyday about 5 times minimum everyday, first thing in the morning, last thing at night and numerous times during the day, always making sure he was relaxed when we left him. As any parent can understand it is horrible to see your baby with so many tubes attached to them, especially an artificial breathing machine and when you feel that the child gets more stressed and frustrated sometimes when you are there….sometimes it is better to keep your distance a little bit more so the child stays relaxed even though you would love to be by their side 24 hours of the day…you have to do what you think as a parent is best for your child to get on the road to recovery.
Anyway Leo was back in the normal ward now and it was up to us to support him and get him back to normal in the shortest time!
Leo had no fever tonight and was getting jealous and upset when Sofia was getting attention so these were all positive signs for us all…. hoping tomorrow will also be full of smiles and possibly a giggle and a word..(my bets are on him saying ‘mama’ first)
Time out from the hospital tonight as Leo is more stable, and I met with a good friend 🙂 to disconnect and recharge the batteries ready for tomorrow…
More progress was made today by Leo the lion, his eyes seemed more focused and he was full of smiles. I think I am still getting closer and closer to getting a giggle out of him when I sing nursery rhymes to him. It’s an excellent sign that he can remember songs and that part of the brain is functioning…
My doctor friend Maria who has been an incredible support to us all said that she thinks that Leo is out of danger now as he has fought the hardest part of the infection. She is surprised and shocked herself as there was a 50/50 survival rate for the lung problems (ARS) and that is without having he brain surgery on top of that…..it is really incredible. Our little brown eyed boy really has proven than he is one in a million.
Maria also told us that the Spanish government will only provide basic rehabilitation help for Leo so now we can start to investigate more into what type of help we can get for him, in order to get him running around riot as soon as possible. We can also begin looking at costs to see if it is more beneficial for him to go through rehabilitation in a different country…..at the back of my mind I am so scared that things could change again so fast as they did last week…but Leo needs everyone and everything around him to be positive…so I am putting 200% into remaining positive.
Sean and Roz went back to Manchester this evening. They came over thinking that they might be saying their goodbyes to Leo after what the doctor had said last week, but their support and strength must have given Leo that little bit of extra strength he needed for the will to live….. Tonight it wasn’t a goodbye it was a “see you soon Leo”.
No words to describe that there are nearly 3,200 views of Leos video of him crying…..thank you. xx
A week ago today, last Saturday we were told Leo could have hours to live as the tumour had severely damaged his respiratory tube, we were sitting by his bedside in tears watching him struggle to take every breath with his diaphram constantly expanding minute by minute….my mum had arrived in the middle of the night, my brother and sister on skype all ready to say goodbye to him and none of us wanting to sleep by wasting a minute of seeing our beautiful baby boy alive…..
A week later….Leo the Lion is still fighting hard….I think he has actually left the doctors speechless as they are so impressed by his progress.
Today he did not have any fever, he was smiling and moving a lot. At one point we thought he was going to laugh at loud when we did the ´head,shoulders,knees and toes´ song with him.
We decided to spend time with our beautiful baby girl Sofia tonight as Leo was stable and we took her to the cinema….and got a pizza with her which made her very happy…. Although at the commercial centre seeing families with young 2 year old boys running around was like a knife being stuck in the wound…..but the most important thing was the Leo was still alive and still there and he still had the cheeky look in his eyes…
Part of us was still terrified as the doctors had warned us that things could go back the other way at any moment…..but we had to for Leo try to be positive…
Tomorrow my mission is to translate the ´just giving page´ into Spanish as there are a number of friends from doctors as well as doctors that would like to help Leo recover and provide financial support…and his story has gone around the whole hospital….google translator will be coming in handy tomorrow. lol
Thanks to Alize and family for visiting today and for the lovely drawings…..Mikeila I am still waiting for your photo tomorrow in your Sunday bests. Lol….
Again thank you for all the feedback from everyone and support as normal and donations….I am so speechless, the video of Leo crying had about 2,200 views in 6 hours…..amazing….
First the Thank you´s
Judy Lewin- Thank you for your amazing message….I was very very close to crying reading it. Means a lot thank you. xx
Asha- I read to Leo his new Toy story book today…Thank you to you both for the gifts. Xx
Mikeila- Thank you for setting up the collection box in your bar. Xxx
Sean (my brother) and the S & P team for making the fundraising video- Such an amazing video.
Doctor Maria- You know who you are- Thank you for checking on my baby boy in the middle of the night when we are not there. xx
So here we go….
I came to the hospital today at about midday, was feeling sick in the stomach on the car ride here about what the doctors were going to tell us at 1pm after the fever episode last night.
We met the doctors and they told us that Leos lungs had cleared from the infection, the liver was still a bit inflammed and the infection had still not attacked his head or his kidneys…the septicemia was still in his body but was slightly less than the previous day…..
The doctors advised us that they had a back up plan if his fever got bad that they could change the antibiotics for the weekend which was a relief…as the weekends made us very nervous here at the hospital as things ceased to exist and function well on weekends!
The doctors told us that today was the best day they had seen Leo since the operation….this was absolutely brilliant news to us!! His head was more inflamed today as the brain fluid was still leaking out as the artificIal tissue had not sealed yet between his brain and skull, this apparently was nothing to worry about the doctors put a bandage on his head to push the fluid back in, if this did not work then they would drain the liquid out of his head.
Then the doctors told us that he cried last night, of course we could not totally believe it until we saw or heard it ourselves… We walked into the intensive care and heard a baby crying….myself and Jorge said to each other ´Is that Leo´… we went into his room and it was, he was crying like he used to…..we were so happy…..never ever thought in a million years I would say that I was happy to hear Leo crying and he had real tears…it brought tears to our eyes…he had not cried since the operation -19 days- it was amazing….I could have got a CD and listened to it all day of him crying…it was music to our ears! J The doctors had said that they had been worrried as he had not cried and it could have been to do with the intervention on the brain….so this was a huge relief to us…
Leo had a good day, he was very alert and looking at us although we did not know how much he could actually see… he went a step back last night but leaped forward today, a day can make so much difference. Even the doctors said that they were surprised at how fast his lungs had cleared and how much he was fighting the infection.
Finally I managed to actually have a sleep in the afternoon, feels like a big weight has come off…We know Leo is far from being out of the woods at the moment but today was a big step forward….
So many people comment about us being brave, we are not at all really …..we have no choice….we cannot cry 24 hours a day….or run away we have not choice but to deal with the situation and sitting sobbing at Leos bed is not going to do him any good or us, so we have no choice but to try and be strong and support each other through this tough time….I actually do not think I have any tears left now anymore….
I was watching videos of Leo today from a couple of months ago…it is incredible to think he was happy, smiling on some videos but he had this deadly tumour constantly growing in his head….thank god the doctor found it before it really was too late for him.
I want everyone reading this to think the next time you think you are having a bad day, your shoes do not match your dress, you cant get a taxi home, you missed the bus to work, your electricity bill was higher than you thought, your boss had a go at you…etc…. think of ´Leo the Lion´ please… this operation he had was one of the most serious operations anyone can have..more serious than a heart operation. Then to top it off he got a septicemia infection which some people die from alone never mind the brain operation on top of it. It attacked 2 of his vital organs, he had artificial breathing….yet he continued fighting…and he is only 2.5 years old.
He has shocked the doctors with his quick progress even though he is still in a critical condition….after all of this he can even try and crack a smile….if that isnt inspiration for you then I do not know what is. So next time you are having a bad day please remember this and you will think that your day is not so bad after all…
I want to take something positive from this experience….I really want Leo to be an inspiration to other kids in similar situations. I was thinking when he is recovered I would love to bring him back to the hospital (our second home now with so many good friends) and get Leo to meet kids that are in similar situations that he was in, we can reassure the mums and talk to them and comfort them, even if the doctor tells you that your child has hours to live and you have to wait by his bed until he dies….do not ever give up hope….anything is possible…kids can beat all odds and surprise doctors…
Thank you for all of the donations….Leo the Lion will be back in no time…with the funds that are being generated even if we need to travel to a different country to advance his recuperation progress it will be done…..anything to get our cheeky boy back asap…