A weekend that I never thought would happen or I would not have in a long long time with our 2 babies at home together.
Yesterday morning was so nice waking up in our own beds with Leo, I didn´t sleep as well as I should have as I was worried about the first night at home without nurses around. Every movement he made I jumped! But he was fine, he had a good nights sleep after all the excitement from the welcome home party. He woke me up by punching me in the face! Typical Leo!
Saturday morning a private physiotherapist came round, she assessed Leo and we explained everything that had happened to him, so he will begin with 3 sessions a week, then 2 days a week I might take him swimming. It was impossible for her to say if he will ever walk again, she will need to see the progress over the next couple of months. So next week he will have his first 3 private sessions.
He ate his breakfast well, baby food, banana and yoghurt for lunch. And then I tried to break little pieces of pasta for him and he managed to chew them without a problem. As I was sitting there next to Leo with the plate full of pasta, Sofia started talking to me. In that 2 seconds Leo grabbed a handful of pasta with his left hand and shoved it all in his mouth. I had to force his jaw open to get it all out….he was soooo fast!! Needless to say there were a hell of a lot of tears after that.
In the evening my friend came round and we gave Leo a bath. I really cannot believe his weight, when we lifted him out it took two of us to carry him!! I can´t even bath him on my own now! I guess it is as his head is still very heavy and the right side of the body its like dead weight. I did buy a bath seat for him but I got as far as putting his feet in it and then thought he would get stuck so I didn´t go any further…..I didn´t want to be going back to the urgencies saying Leo had a bath seat stuck on him! lol
Leo has been so happy spending time at home with us all, he has been laughing so much with his big sister, playing with toys, lego and he still loves playing hide and seek. Sofia has taught him a few new words now and the change in her is incredible and the love between the two of them.
I had a couple of good friends who came round to move Leos bed out of the living room back into his bedroom. I had orginally put his bed in the living room as I thought he would be bed ridden and not moving, and it would be easier for me to cook and for him to still be involved in things but that is certainly not the case…It seems everyday I am moving furniture to try and find the perfect balance for him!
I was in the kitchen in the morning and I put Leo on the floor, Sofia was outside getting toys for him and he rolled over, then pushed with one leg to the other side of the carpet. I looked was like WTF how did he get from there to there……incredible!! So I cannot really leave him on his own on a bed…might have to think about getting a cot for him.
Leo is still a little joker!
We are trying to stimulate his right hand but he is very protective of it and grabs it and covers it with his left hand…it will come in time.
We had such a lovely weekend relaxing and it is so nice not worrying about work at the moment, I feel like I have more energy for both of the kids.
Today Leo actually ate spaghetti Bol, I mashed it up but it seems he is getting more and more confident at swallowing which is fabulous!
I read on the internet that sometimes when someone has brain surgery that when the tissue is regrowing that they can get pains in their head and it helps when a hand is rubbing the face. Leo does want us to stroke his face a lot and he relaxes more when we do it. Tomorrow I will ask the doctors if Leo is feeling any pain or headaches…as also sometimes he just breaks out crying for no reason.
So tomorrow another big day the MRI test, we need to leave our house at 7am! They will also do a spinal column test to see if any damage was made to his spine from the pressure of the tumour, this will also tell us if he will be able to walk again. I think it will probably take 2 days for the results from these tests. I am feeling a bit nervous about them but at the end of the day whatever the MRI shows or the spinal test shows, we cannot change the results. We can only work on making Leo stronger and stronger with whatever obstacles lie ahead of him in his life. If the results are all ok we will finally get the official papers to leave the hospital with all of the reports and then find out the next step.
Today I managed to take a couple of photos of Leos scar on his head…it really is incredible the amount of skull the cut to remove the tumour. One day Leo will ask me about what happened to him when he was young but I will need to make sure he is at an age where he can really understand everything we all went through and how serious it was. He also has a few bald patches where it looks like the hair is not growing back, I will ask the doctors about this also tomorrow.
We want to say a BIG Thank You to the Villaricos Gold Society for their beautiful letter and their more than generous donation for Leo. Thank you so much.
People keep asking if I will continue the blog now, I think I will continue for this week everyday as we have the tests and then if all is ok I will update every week.
Don´t forget about the naked skydive guys! Here is the link