April 2012
well another busy month. on the 3rd April Owen went to hull royal inferminary to have his endoscopy, Botox and hip examination, i knew we were going to the high dependency unit afterward from when he's being put to sleep before as Owens breathing goes very low and his heart rate goes sky high. this time Owen actually had it all done instead of going and getting sent home, it took around 45 minutes, i spoke to Owens doctor who did his endoscopy and he said everything was fine and that we should just keep what were doing as he will not need a niss-ans operation to stop him from being sick, i was annoyed as we've being waiting over a year to do something as it keeps happening, then i saw my son's orthopedic doctor who did his hip examination and Botox, and said the Botox went fine Owen is in recovery, but his hips had worsened and were allot worse than even before his had the operation to release his tendons to help, so i just have to wait until may to see him and discuss what plan of action were going to take as i think an operation may be in order, Owen was taken to the high dependency ward, his heart rate was a little high but his oxygen was ok, Owen was transferred back to the normal ward around 10pm that night, but i wasn't there, i wasn't feeling well all day and had to go home it got so bad, i was so mad at myself as it's the first time every leaving him in hospital alone, but i knew he was on good hands.
one week after Owens op he was meant to be in Leeds for his MRI scan, but he wasn't up to it the anesthetic still was in Owens system and he was still sleepy and drowsy, so i couldn't let him be put to sleep again, so i canceled the appointment and awaiting for a new one.
Friday 13th we went to otley near Leeds to see Owens surgeon that did his first gastrostomy and Mick-ey button, i spoke about him constantly being sick, and he said he did need something to stop that as we were going round in circles of Owen being sick loosing weight getting ill, so we decided to stop a few medications that were no longer working on him and we decided to do an operation were a tube will connect to his Mick-ey button and go straight to his bowls, and hopefully this will work, if it doesn't then Owen will have the niss-ans operation to tie his tubes in his stomach to stop the sick, but that's going to be a major operation for Owen and could spend a few weeks in hospital so we want to try something that may work and he'll only need to be in hospital for a day.
16th Monday we went to Newcastle to see the mitochondrial specialist, i had no expectations of what the doctor would say, so i was quite calm, the doctor does believe Owen could have mitochondrial disease just like allot of Owen other health professionals, but we still just cannot diagnose it, they have done all the tests except one which they will be sending of to London, if that test also comes back negative it doesn't rule out that Owen may have mitochondrial disease, but they will put Owen into a programme were all the children in the programme they think have mitochondrial disease but just cannot diagnose it. he also said that Owen cannot see properly as we thought he did, Owen can properly only see blurs or colors, or shapes, but Owen will be having another eye test in may, it did really upset me when i got home and thought about it, as all this time i was thought Owen could see me and that he new my face and his surroundings, then to find out he may not be able to, i don't want to be a blur to my son, it really did knock me for a few days, until i got my head around it a little.
18th Wednesday Owens' started his first physio session for his Botox, there has already being massive improvement without the physion as i can bend his arms to get into his car seat, i can dress him allot easier, we can play little games with his hands again , Owen will have 6 weeks physio and get some splint for his arms also.
26th Thursday Owen being doing fantastic with his physio, he know had some splints and they are working wonders, they do et him a little uncomfortable, but he's doing so well.