Updates on DaniRella's family

I'm so glad you updated us, Danielle. I was wondering today he he was doing. Continued and

bump for last update - if anyone wants a copy of the email just FM me their address.

Thank you for the update and I will continue to keep your brother in my prayers

****June 29th****

I'm almost afraid to say it but he is doing a little better today. They are keeping him on a steady dose of antibiotics and it is almost expected that anyone kept in a hospital for this amount of time can get an infection like this.

This morning my Dad said he was very alert -- we have a big piece of paper with pictures of Christopher all over it - my Dad held it up in front of him and Kenneth used his one hand to hold up the other side! Then, as he is looking at all the pics of Christopher a tear came down his face -- and his BP started going up A LOT so my Dad took it away as not to agitate or upset him too much. The emotion he is able to show is a great sign.

So far so good - the prayers are working and I hope we can keep them up JUST until he is out of there and at Kessler. I am HOPING so hard for this week at SOME POINT.

My Dad and I have figured that if he doesn't get cleared to go by Thursday we are just going to take his bed (hey, it's on wheels) and roll it on out of there! We are about 45-50 minutes from the Turnpike and we are on our way to Kessler! LOL! Some of the cops offered a trailer hitch for us.... yes, we are getting DESPERATE.

thx for continuing to keep us updated on how we can be praying for kenneth! the prayers will continue way beyond his move to kessler!!

***July 1st***

I'm getting down and TRYING not to be that way. I think the fact that he is not at the rehab place yet is taking the wind out of my sails. I know I have to be patient - I keep telling myself just to be thankful he is still here and I am but it is so hard to see him sit there, day after day, with what FEELS like no end in sight although I know that is not the case, in reality.

Times like these I just look at the positive - his fever is pretty much gone, it seems like that infection is getting kicked, the coughing is much better, he is more responsive and looks much better and overall I feel like we are moving in the right direction.

When I start to get upset and think about how he is getting robbed of so much of his life I need to redirect my thinking to something else or I'll get too upset. When everyone else is talking about 4th of July coming up and how excited and happy and fun, etc... I'll be in the hospital with Kenneth. People ask me if I want to go to their BBQ and it's like - I can't even think about that right now. We went out the other night to get something to eat quick - something other than the same old food and my husband and I were riding back and I see ALL of these people sitting along the road (Carman Ave by Eisenhower) and I'm like ??? -- then it hit me, they are waiting for a fireworks show. I just started to cry - I don't know what came over me. I used to love summer - now, I don't know what to feel anymore.

Sorry for the debbie downer post - I hate being that type of person. I know things could always be worse - who the hell am I to complain? He's alive and some people aren't that lucky - some people have no choice and their loved ones are taken.

I just keep praying he gets to go soon - for him and for all of us.

Hang in there Danielle and do NOT apologize for your post....we're all here for you & u can vent & get out every feeling u need to whether it be positive or negative..we all love u & are all still praying!!
stay strong, stay positive, stay faithful & confident!! God kept him here for a reason and he will and IS getting better!

You and you family are on a long and tiring ride but it's worth it. He will get better and he will be with you next 4th of July and you can all watch the fireworks together. Hang in there.

Not that it really compares to your situation but when my FIL fell quickly ill, it was 63 days of going to visit him in the ICU. It was so exhausting. But he knew we were there and I truly believe it made a difference. You are a great sister and Kenneth knows that. I'm sure he'll tell you how much all of this has meant to him when he's feeling better.

Hang in there

as always---still praying for kenneth dani!

Danielle, just take it one day at a time. He's come so far along in such a relatively short time, the best thing is to let his body heal on its own without pushing it too much.
Take care of yourself too !

Continued prayers for Kenny, and hugs for adorable Christopher !

****July 3rd****

Kenneth has been doing better but the same thing that has been plaguing him since the first moment they said 'he is ready for Kessler -- buuuutttt we just want to see if we can fix this small amount of fluid collecting in the front of his head' so... they tried putting in a separate drain outside the head that he did NOT tolerate - then, they tried just turning his regular perm drain up to see if it would drain that part which didn't happen so FINALLY, his neuro doc said we just need to put a perm drain in from the front connecting to his already in there shunt in the back and THAT will solve all his problems

so, today at 2pm he is going in to have that done. then, he will 'recover' from that for two days and he should be 'much better' and be able to finally get that PUSH to go to Kessler by next week :::KNOCK WOOD!!::: we are becoming very supersticious. The infection is much better ::::knock wood:::: and they just want him settled to go BEFORE anything else comes back or he gets sick again because aside from this little collection of fluid - he has been VERY aware and moving a lot, etc. I just hope this doesn't set him back - I mean, I can understand being sedated for a day or two to recover but more than that I want this procedure to HELP so he can get the HELLLL out of there.

He has been moving his arm (the good side) A LOT -- all the way up and he'll put his arm on his head. If we turn the light on too fast, too bright he will cover his eyes lol! He just touches our heads, my mom's head and mine, a lot and kind of takes our hair and puts it behind our ears. It is like he is trying to console us. Then, he'll give me a high-five if I ask him for it! Last night, he did it over and over again - it was great. I guess this is why I'm worried that this procedure will make him very 'out of it' again for a while because he was so aware --- we even asked him some questions with a 'YES' card and a 'NO' card (one of the cop's ideas) and he was answering them for us by taking the appropriate sign.

PLEASE let this be the thing he needs to get OUT of there, PLEASE let this make him even more clearer than he has been and make all his 'fluid' problems go away because those problems have A LOT to do with his equilibrium and his sense of balance and everything else -- God, get him to KESSLER.

I am keeping your family in my thoughts and prayers.

continued for you all

Continuing to keep your brother in my thoughts & prayers

Good Luck Dani!!! I really hope you guys can get him to that rehab center!!! Even for just morale it'll be great!!! I'm still praying for you guys!!!

Dani, that is so great.

You should see about making him a communication board.

You'd basically use a bunch of symbols/pictures/words (whatever works best for him) and he can point to what he wants.

I'm sure the SLP will do this... but even if it's something you want to try for now. Starting off with yes/no is great! If he is using those consistently then that is a fantastic sign!!!

I have worked with some clients where we have made these kinds of boards, and many times they work wonderfully! You can make different boards for different things (like emotions or whatever). Have him start off by choosing from a small set (2 pictures) and then you can increase that little by little....

I'm still praying for him!!!

Sending tons of prayers to your brother that this works and you can get him off to kessler

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Posted by MrsDaniRella


****July 3rd****

Kenneth has been doing better but the same thing that has been plaguing him since the first moment they said 'he is ready for Kessler -- buuuutttt we just want to see if we can fix this small amount of fluid collecting in the front of his head' so... they tried putting in a separate drain outside the head that he did NOT tolerate - then, they tried just turning his regular perm drain up to see if it would drain that part which didn't happen so FINALLY, his neuro doc said we just need to put a perm drain in from the front connecting to his already in there shunt in the back and THAT will solve all his problems

so, today at 2pm he is going in to have that done. then, he will 'recover' from that for two days and he should be 'much better' and be able to finally get that PUSH to go to Kessler by next week :::KNOCK WOOD!!::: we are becoming very supersticious. The infection is much better ::::knock wood:::: and they just want him settled to go BEFORE anything else comes back or he gets sick again because aside from this little collection of fluid - he has been VERY aware and moving a lot, etc. I just hope this doesn't set him back - I mean, I can understand being sedated for a day or two to recover but more than that I want this procedure to HELP so he can get the HELLLL out of there.

He has been moving his arm (the good side) A LOT -- all the way up and he'll put his arm on his head. If we turn the light on too fast, too bright he will cover his eyes lol! He just touches our heads, my mom's head and mine, a lot and kind of takes our hair and puts it behind our ears. It is like he is trying to console us. Then, he'll give me a high-five if I ask him for it! Last night, he did it over and over again - it was great. I guess this is why I'm worried that this procedure will make him very 'out of it' again for a while because he was so aware --- we even asked him some questions with a 'YES' card and a 'NO' card (one of the cop's ideas) and he was answering them for us by taking the appropriate sign.

PLEASE let this be the thing he needs to get OUT of there, PLEASE let this make him even more clearer than he has been and make all his 'fluid' problems go away because those problems have A LOT to do with his equilibrium and his sense of balance and everything else -- God, get him to KESSLER.

---

Dani - continued prayers for your brother and family!
I wrote you an email about someone who wants to have a show to raise money for the foundation - let me know if your family would be interested!

Continued prayers for Kenneth and your family.