After another couple of weeks I asked if I could please take him home because it was hard dealing with Mark and an active 8 year old in that room. After a meeting it was decided I could take him home during the day but bring him back at night. We done this for nearly 5 months. At three months they told me they expected his head to grow very quickly, at that stage it had not started but they wanted to put the shunt in while he was well, so we spent a week at hospital having that op done, by this stage he had started taking (having) seizures.
Christmas eve night there was no way I was taking him back to hospital, so we lifted the phone off, and kept him beside us, we just looked at him most of the night in case anything happened, we left the phone of all over Christmas and my husband told me to put it back on we had not stole a baby he was ours so we had done nothing wrong. Few days later we got an appointment for him to see his doc, and she said she understood and they were not doing anythin for him as at things were going well but just take it a day at a time.
We were very busy looking after Mark, and Philip and my daughter Naomi, but Philip loved his food, was gaining weight, and to our delight was similing, chuckling and following us if we were close to him, so all in our world seemed right! We obviously knew he was not progressing 'normally' but we had him he was happy most of the time, the seizures we were used to with Mark, so we just carried on. When Phillip was 11 months old,we found Mark dead in bed one dreadful saturday morning. When we rang to tell people they thought I meant Philip. The house was full of doctors, and police a real nightmare, they done a post mortem and discovered Mark had a tumor on the left hand side of his brain which 'switched' his brain off and nothing could have saved him. I knew he was not distressed when he died, because we had just sucked out his trachy and he smiled at me and fell asleep or so I thought, so I went into bed beside Philip and didnt realize til next morning.
I do not send Philip to school, I just keep him at home because every minute is so precious, and being selfish I cannot bear to be apart, we do not have respite care either, he is either on my knee or his Dads knee, he doesn't like to sit on his own bottom, he get agitated and red faced til we lift him, not sure but some people say he is spoilt! His smiles giggles our so precious because they told us he would never live long enough to smile, and didnt have the part of the brain that would let him show pleasure, boy are they wrong, he loves noisey toys, he loves people whistleing, and he loves classical music, Where does this come from, besides no one else in the family like calssical music. He loves when my husband tickles him with his beard, he loves the spa bath we got him, and even tho he cannot say it he really really loves us, his beautiful big brown eyes light up when we speak to him, he is everything to us. So far he has escaped all the chest problems that wee Mark suffered all his days. He Praise God keeps reasonably well, tho he did break his leg last year, they think it maybe happened during a seziure, and because he does not weight bear he now has brittle bones. Thankfully he came thru that operation very well and we were only 1 week in hospital. I wanted him home as soon as possilbe because swine flu was about at that time. His bowels no longer work, and at 16 years 10 months he has stopped responding to enenmas, so I have to clear his bowel manually every couple of days, his seizures can be dreadful, he has quite a lot every day. If unwell in any way, then he can have maybe 30 plus seizures per day. That is usually when we use rectal valium. He can be very agitated some days, and he does not have a sleep pattern. After all my years of lifting I have had to have a hysterectomy , so my husband has now had to leave work to help me look after him. So this is now a new phase in our life, but Philip defnitely makes all the heartache and worry worth everything, he is doing his best, so I think it is only right we do our best to help him.