From JOEYS Dad Spending the morning with Joey while every one sleeps. He is playing one of his favorite games, Clash of Clans. We know hes feeling better when he wants to pick up his iPad and play something. Since he doesnt get around that well because of the extra weight and his recent hospital stay, he enjoys using the iPad. Since he came home he doesnt walk as well as he used to. But even before this he wasnt that stable on his feet. The extra weight has really slowed him down. Add to that the double vision that he always has and it makes it worse. Since his recent stay something else has changed and he has a really hard time getting around. Hes been complaining about the foot that they had an i.v. stuck in it. Cant see why that would still bother him but were hoping it gets better. Would really love to see this little boy be able to get around like he used to and be a normal boy for a little while. Ive been trying to organize all of our pictures and videos that we have taken since this nightmare began and its very heartbreaking to see the drastic change in him. Before the swelling, shunt and steroids he was such a happy little boy who could run around and really enjoy being a little boy. Now he doesnt do anything but lay and sit around and sometimes move from one chair or couch to another. He likes to follow us around or be where everyone else is but its really sad to see him just sitting there. Yesterday we spent the day pulling down Halloween decorations and all he could do was sit on the front stoop and watch us. But that didnt last long because its not comfortable enough and it was a little chilly outside. His recent stay in the hospital seems to set him back a little. Hard to say if anything happened the night his body was shutting down or if there are any neurological problems that occurred after the shunt was removed. Were back to over analyzing every problem we see with him and it can be very stressing. Along with his lack of balance and poor walking Ive notice that some times during the day he seems to slur his words a little. We worry that it could be related to excess fluid build up or the shunt removal since it was in his brain. Hes also getting i.v. antibiotics 3 times a day and maybe thats causing some changes. It all gets very stressing because we dont want to misdiagnose a symptom or totally miss something like we did in August when he was having issues with drainage from the swelling. As we have seen before it doesnt take much to really knock him down and now that his body is getting more frail it wouldnt take much for something missed to really hurt him, set him back or even worse. Every day we have to close attention to him, how hes feeling and what he can and cant do. All we really want is for him to be somewhat normal again so that he can really enjoy being an 8 year old boy. Looking through the pics taken prior to August is really depressing. All the fun and enjoyment of life has been taken out of him and Im really hoping that now that the steroids are gone he can hopefully start losing the extra 40 pounds that he put on his 50 pound body. The problem is getting him up and moving enough to do that while his balance is off and his foot is hurting. Right now hes very happy because his kitty Joe-Joe is sitting next to him. Hopefully today will be better than yesterday and each day will get better until this ugly effing tumor starts coming back. It isnt easy watch him and living every day knowing that he doesnt have long to live. We are always in tune to what he is doing or how he looks and what hes doing while he sleeps. Every night I go to bed and just watch him and hold his hand, arm or some other part of his body. During the night we have to check on him just to make sure he is sleeping and of course hes the first thing we look at in the morning when we open our eyes. It really sucks wondering if today will be the day. No one should ever have to live like this and worry about such a horrible thing with such a young child. Ive been looking through pictures because I want to have enough good ones to use at the funeral home and around the house when hes gone. My kids should be doing that for me when Im old, I shouldnt be doing that for my 8 year old son. We have to make funeral arrangements, pick out a head stone, talk to cemetery people and plan a wake because our 8 year old son has a disease that doesnt get enough research to find a cure. Though we enjoy every minute of every day with him, every minute of every day also sucks royally because we know he will be gone way too soon. So for now we will do what ever we can to make him happy and pretend to be happy on the outside when we see people or are out somewhere. We will do what ever we can to make his sibling happy and not miss out on life because we have to focus so much time on Joey. Yesterday we had to miss watching Rissa in the Veterans Day Parade. Not at all fair to her but it would be too dangerous and difficult to take Joey there. Were hoping to make Thanksgiving and Christmas special for them too but we all know the luck Joey has. Every time something special comes up, something knocks him down. But we will do our best and thats all we can do. Please forgive us for not making it to special events or commenting or replying to messages or posts. We do try to read all of your comments to our posts. I have spent a lot of time copying, pasting and printing our posts and your comments on word document so that we can look back at them in the future. We do the best we can and dont always have perfect days. Thank you all for being so kind and supportive. And for listening to me ramble on and on.
Posted on: Sun, 09 Nov 2014 14:04:13 +0000
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