Joseph Zimara's Journal
Where Did the Time GO?!
Written Jan 22, 2014 9:46pm by Breezy Zimara
Well, I didn't think I was updating often enough before...boy was I mistaken! Time for the 6-month update. Not sure where to begin?!
August was very long. With no therapies, no school, and no assistance of any kind, mom crashed! Joey is just too much to handle for one person 24/7. So, the kids stayed with grandma and grandpa for a few weeks while mom tried to figure out what the heck to do. Not an ideal scenario for any of us I don't think, but they quickly came up with a routine and things worked out!
Late September we were fortunate to have auntie Brandee return for a couple weeks to help out as well. Did some much needed gutting of closets and the garage to clear up storage space so Joey would have fewer items available to throw at us! While we all enjoyed having her here, once again the time went way to fast.
September 1st we finally were able to get a PCA. He has now become like a part of the family, and without his help I don't know what my parents or myself would have done. Definitely makes things much more manageable and we can tell that he truly cares for Joey and his well being...the second PCA, not so much. Had to let him go on day 2! Was a bad deal, but glad I learned quickly so Joey didn't have to suffer.
Joey and Calista spent much of October and November with grandma and grandpa again as mom dealt with some medical issues. Resulted in a nasty surgery with several weeks of recovery, but luckily was 90% healed by Christmas...which was awesome this year!
We were fortunate to be able to have all local family together for Christmas this year! What a blessing as we were spread out across three states...maybe 4? last Christmas.
Joey on average has been doing much better at home over the last month. We have seen much less hitting, biting and pinching than we experienced during the summer and early fall. In the last 6 weeks or so he has learned how to say moo, movies, boobies (don't ask), babies, Scooby, yeah, and a few others I can't think of at the moment. While some days he will barely say anything at all, other days we will hear all of the above words and more. Not really sure why he has difficult speech days but think there may be a correlation with his seizure activity.
Oooh siezures...after several med changes throughout the fall months and a couple nasty rashes from one of them, we have finally got them to a minimum! He now averages <1 seizure per day and often times they are so brief and mild that most people probably wouldn't realize that he'd had one! Yay!! He doesn't like taking the gabapentin they added to his list, but it works so we do what it takes to get it down his throat.
It's been 2-3 months since we've had to take him to the ER for anything which is a thrill! He has been very happy lately having dad around more often than he was previously. Dad is definitely his favorite person (grrr) and he has ways of letting people know that despite his lack of words.
Joey has been having a rough time at school lately. With much aggression and temper-tantrums making it difficult for his teacher and paras. He, as usual, wants to do what HE wants to do, and when he wants to do it....this is no different than before his TBI, just a little more demanding and possibly more likely to win now.
Progress slowed some for a while but with the recent increase in words and sounds we remain hopeful and continue to pray for more and more recovery. He is a tough guy and I think he will show some of the early doctors a thing or two before he's done improving!
Written Jul 29, 2013 10:10am by Breezy ZimaraAnother busy couple of weeks. HFM finally cleared up after about a week with just a few scabs left to finish healing. Joey has been doing a little better with listening when told "don't" and "stop". Still not 100%, but we will take what we can get!
On Saturday we celebrated the twins' birthday with just a few of their friends and family at Chuck-E-Cheese. Although quite loud and hectic, it was a good time. The kids had a blast! Joey was not a fan of having to wear goggles in the ticket booth, but enjoyed everything else.
This will be his last week of summer school I believe. While it will be nice to let him sleep in a little, I will definitely miss the two hour break three days a week that he was spending in school. It's amazing how much you can get done in just a couple hours if you know that's all you have!
For now, all else is well. We continue to practice new words and following small simple instructions. Progress is very slow, but we have seen changes. He is still having seizures daily which is disappointing. After speaking to another mom on Tuesday whose son also has epilepsy, I have been looking into the Ketogenic diet. It sounds quite interesting and has been around for a long time. At the end of the diet, a person is said to be seizure free. It worked for this other boy, so we may try it as well. I'll keep you posted when we start this and how it goes.
For now, we will keep doing what we have been and enjoy the remainder of this way too short summer!
Written Jul 14, 2013 5:16pm by Breezy ZimaraBack to the clinic today. Yesterday Joey developed a rash over much of his body and in his mouth. Hand, Foot and Mouth Disease. What next?!
The rash started on his knees early afternoon and by supper time had covered his arms, legs, hands, feet, mouth and thighs. They quickly turned from red spots to pimple type bumps to small blisters. Some of the first to show up have now turned to scabs....yuck!
Since it is contagious only through bodily fluids we were told we did not have to keep him home....they obviously don't know Joey! Lol He puts his mouth on everything, so I think we'll lay low for a couple days until it passes.
Can't wait until he gets his immune system back to normal.
Good excuse to stay in and have a movie day!