Hi all, that is if there is anyone out there that even bothers to check my blog anymore seen as I haven't! LOL.
So.. where have I been?
Well, Jeremiah started having a few wierd things start happening, the main one being that often only one side of his mouth would move when he talked or smiled. It seemed to get worse and an MRI was done to rule out a brain tumour (he was also vomiting upon wakening).
We found out that he has a rare brain condition "Chiari Malformation"- where the base of his brain is basically herniating down his spine, which blocks the flow of fluid around the brain so it can function correctly.
Some people have this without symptoms, most who have symptoms start noticing it around the age of 30yrs, and fewer again are as young as Jeremiah.
From Oct to recently Jeremiah has been quite bad but he seems to be much more back to himself at the moment. They said you can have good times and bad times with it, so we are thankful for the rest he is getting.
The things that affect Jeremiah -
-Difficulty breathing at night where he will stop breathing and his body will eventually jerk and he would start breathing again (therefore he sleeps with us again).
-Painful legs and body, headaches which again are mainly at night or if he has been quite active.
-One sided body weekness, so only one arm swings when he runs and he can get very uncoordinated, lots of stumbles.
-Trouble swallowing, again worse at end of the day.
-Sometimes he will pause in whatever he is doing and wack at his eye or ear for a while, then stop and move on (we have been told people get blurring vision and hearing loss coming and going for short bursts but he is only 2 so he can't explain if that's what it is).
-He was completely toilet trained (1's and 2's) and even at his day sleep but he now has no control, he does try but doesn't seem to be able to read his body anymore. Again this is a symptom of some people but Jeremiah is so young we won't know if he has just gone backwards as yet.
He was getting so bad with it all that we were really worried, he just stopped playing and being active, he was in pain every night and had difficulty swallowing at tea, but thank God, he has really come good at the moment and is even back to jumping with both feet and running again! I didn't really notice how much he wasn't himself until now that he's almost in full swing again. Best thing is no breathing problems at the moment either ( very hard to get any sleep with a child that you are continually massaging for pain and stops breathing on and off!)
There is no cure for his condition so they will keep giving him MRI's throughout his life based on his symptoms and treat him accordingly. He may need Brain surgery which is sometimes helpful in easing or slowing the progression but has it's own risks so we would only look at that when the benefits outweighed the risks. His next MRI is in March, then we are going to fly to America during the year to go to a place that specialise in this condition. There is a lot of difference of opinion in the medical world of what are "symtpoms" of Chiari, but now that I have had contact with others in the world, it seems to be that some symptoms that are called "not Chiari related" happen to be there in most people with Chiari, so it's very frustating getting him the best help when even the neurosurgeons are not in agreement with each other!
On a good note. We reached our one year anniversary on the 28th Jan since we brought Jeremiah home!! WOOHOOO! In some ways it feels as if it has gone by so fast but on the other hand, it feels like we have always had Jeremiah with us. We apply for a court date, finalise the adoption and then I can finally show you photos of him!!!! I will have to do a big catch up and show you photos of his 2nd birthday, and Christmas (the first of both that we have celebrated with him).
Blessings to you all !!!!!!
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