Thursday, February 1, 2007

February Entries

Feb 28


Feb 22 New Way Bar Fundraiser
Where to begin, it’s been 5 days since our first fund raising event for Daniel and I am still flabbergasted at how many people opened their hearts, wished us well, and gave their all to make his event successful.

Let me start by saying, Thank you to each and every person who gave their time in selling tickets for the door prizes, the 50/50 raffle, the Pistons raffle, the grab boxes, and the tin can raffles. We had tons of different drawings, and EVERYONE was involved. It was very heart warming to see The New Way Bar in Ferndale filled with people. Many people that we might not have known directly, but were friends of a family member, or a co-worker, or someone who just heard about it through the grapevine. Yes I come from a large family, and many of them where there, but they brought their friends and they passed the word.
Daniel came for a brief time at the beginning of the benefit but we opted to have him leave with his favorite Aunt Ann because of the smoke and the loud music. So Daniel got to spend the day with Auntie Ann and some time with Grandma Tamm at church and home. From my understanding he was a very good little boy!
Now let me get into details of the fundraiser…….we had Aunt Jan selling tickets and Aunt Cathy gave her a break, along with sisters Brittany and Caitlin collecting for the 50/50. Sisters Victoria and Alexandra distributed the grab boxes (which were a hit with the younger crowd!) Cousin Ronda sat at the door to collect and give out door prize tickets, given breaks by Uncle John. I am sure there were many others that helped out too, but I was (and so was Lonnie) so scatter-brained by being introduced to people and trying to talk to people (which we were never able to stand in one place for more than 5 minutes! Sorry to the people who we missed and weren’t able to talk to for long or at all!) Entertainment-Well we had this wonderful man (who I didn’t even know prior) volunteer to come and do the karaoke for us! His name is Mike Dreslin, and he traveled far to come help us out. Many people were shy about getting up and singing, but there were some that enjoyed and did really well!! Like Cousin Bryan, and Uncle Tommy, who both did great. Then there were various people who brought their own equipment and played guitar and sang. Lonnie even got up there with his friend Doug and did a few songs…….I just LOVE when Lonnie plays, gets my heart going pitter patter!
We called 3-4 names ever hour for door prizes for 6 hours, that’s a lot of door prizes! Then we had the tin can raffles which were a huge success. There were about 30 different things you could put your tickets into to win. Among them were gift certificates and gift baskets, afghan (made by Grandma Tamm), hair products from various Salons in Royal Oak , plus a big bag of goodies for someone from head to toe from Aunt Aimee! Gosh so many people helped out by selling tickets, collecting donations (Harley, Uncle Tommy, Bryan……Caitlin, Karrie, Marie, Uncle Greg, Uncle Steve, Uncle James & Aunt Cathy …..and numerous other people!) There was Uncle Tommy’s girlfriend, Lisa Phipps, who brought tons of food, pizza, ribs, salads, ham roll ups (which Tori and Brittany ate!!) chicken wings. So many things. Then Tina from the bar got more pizzas at the end of the night. Everyone who helped set up…….Ronda, Jamie, Jason, Bryan, John, Jan, Caitlin, Alex, Brittany and Tori for watching Daniel!
Yes I’m rambling, but there are sooooo many people to thank. Gosh all the companies who donated raffle items off. Those where a great hit, and the silent auction items, from the signed jerseys to the hockey tickets and hockey puck, and the Pistons tickets! WOW, all I can say is WOW. And also thank you to the many people who got in on the door prize and pistons raffle but weren’t able to make it. Wow, wow, wow. Oh! and the waitstaff/bartenders donated half of their tips throughout the night also!
Now, to write and mail all the thank yous! And if I forgot someone, please accept my apologies
February 18

Right now, All I can say is WOW.......I didn't realize how many people you can shove in a little place like that!!!
and many people are so giving!
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around
and everyone there, did just that......they have helped Daniel greatly.
February 17

( You can call him Lonnie!)
Yeah!!! We made it. Exactly one year seizure free! This is HUGE!!!! We were so excited by this we made Daniel his own blueberry muffin today! Yummy! That was our celebration!
Yes we can finally say we made it through this year, but there is always the very very strong chance Daniel will have seizures again. Different types, a different severity, Daniel will always have the high potential to have seizures. It is just awesome that the medication he is on has done a wonderful job so far!!

Unfortunately soon he will have to be taken off this medication because of the possible side effects. Then we will have to find another med to hopefully stop any break through seizures. It was a huge thing to get seizure control with the Infantile Spasms. Obviously the more spasms you have the more of a disability you will potentially have. With your brain seizing so much you don't have the time to learn and the damage to the brain is higher. We were very fortunate to only have to be on one anti-seizure medication at a time. Many people with epilepsy are on multiple seizure medications and STILL don't gain seizure control. The type of epilepsy the Daniel has, seizure control is critical to everything else. So .......Thank you God for letting this stuff work.

Wednesday we will be going to have Daniel's teeth fixed, he will be given a sedative to relax him and they will quickly do the work. I am hoping because it will be happening at "nap time" that the medicine will make him fall asleep and he won't be awake at all. Otherwise I imagine it will be a very traumatic experience for me ( ) I don't handle these appointments very well. I hate seeing him have things done to him that scare him, which he doesn't understand. Then Wednesday afternoon we have an appointment with one of my favorite doctors. Dr. Chugani, I always come away from his office feeling ok with what is going on. He has a way of making things "not so bad". Although it could be different this time as I have a lot of questions to ask him about alternative methods of therapies. Conductive learning, Euro-peds, Hyperbaric Oxygen, stem Daniel technically classified as cerebral palsy? So he have dyspraxia, neuro-motor disorder, muscle disorder? Some of the things that are going on with Daniel (the spasicity in his arms) do not fall under the diagnosis of CBPS; they are not controlled by the part of his brain that is the perisylvian area. So does that mean that the spasticity is from the IS? Or is it because the Polymicrogryia is on more that the perisylvian area of the brain? And....further more does the PET scan that Dr. Chugani does, does that tell WHICH parts of the brain are working and which are not? And if a certain part isn't working can we train another part of his brain to compensate for the section that isn't working? Would the stem cell therapy that isn't legal in the help him with his arms and the movements, strength and muscles in his upper body? There are studies that show that HBOT helps children with CP, well Daniel mimics CP....why wouldn't it help him? Thing that stinks about HBOT if it did help him wouldn't be covered by insurance’s NOT proven.... Well I could go on and on about this stuff.......I have read just about everything that I can find (and understand) on the internet. We are Daniel's only advocates, and we have to make sure we are doing everything that we can for him. And damned if I'm not trying to understand all this medical stuff.
February 8
Daniel got his medical alert bracelet this week. People think..well why does he need one of these little things. Here is my much as he is in as a passenger, if we were to (god forbid) get into an accident and I wasn't able to care for him and got hurt. The paramedics would be able to tell right by his bracelet what is wrong and his emergency contact information. It was a wonderful idea and a great Christmas gift from his sister Caitlin.
February 7
Having a heck of a time keeping Daniel healthy. It is either a cold with sinus issues, or teething.....both of which is making for a not very happy little boy who is, I believe, on strike from therapy sessions. He refuses to do ANYTHING this past week
February 6
YES! it is finally in! We have our very owe Rifton Gait trainer!!!!
I am sooo excited, maybe with having one here and us getting Daniel in it more than once a week, we will be able to teach him to scoot around the house. Give his little guy some mobility!!!
February 5
Let’s see, we didn’t have a real eventful weekend but never the less it was relaxing. Daniel has been playing with blocks a lot lately. He isn’t stacking them, but I do the stacking and he does the knocking them over. Its very cute, he’ll knock them down and look at me like, “Hey did you see that? I knocked those down all by myself!” He is so cute! The kid definitely has personality. This is what keeps me going. Brings me back to the here and now, instead of wishing a had a magic crystal ball that I could get a glimpse of who or what Daniel will be 13 years from now. I watch him a lot, and wonder what his speaking voice will be like when and if he starts to use it, if he’ll be able to play with the other kids his age, what will he look like, will he end up looking different from the other kids because of the lack of use of his limbs? Will he be left handed or right handed? These things nag at me continuously. Will he ever feed himself, speak words, take his first step unassisted? Will he be invited to birthday parties? How about, will he eat solid foods?
It is very painful when the reality hits, that Daniel, no matter how hard I want him to do the things the other children his age are doing, he can’t, and he won’t for now. I see other children clinging to their parents hands as they walk around the room, or taking a snack and putting it in their mouth and eating it. And these little things tear at my heart, because Daniel can’t do them. I am waiting for the day when he realizes that he isn’t like everyone else, and how am I going to handle that? How am or will I be able to explain to him, that God made him differently then other boys and girls. Will I be able to make him understand that he is different because he is special. He has something MORE than those other kids who are considered “normal” His personality shines. He can touch lives, and make people realize what they have shouldn’t be taken for granted. He works hard for what he has. All these feelings for Daniel can some times be very overwhelming. You don’t realize until you have a child that has issues, how lucky you are. We take things for granted, we take the things that are suppose to just normally happen for granted. The first steps, the first words, the first smiles, the first days of school, the first school dance. These things aren’t happening for Daniel and it is so very, very unfair. I look at my little boy, and think……God why did you have to make Daniel be “special”? Why couldn’t you just let him be a “normal” little boy? What did he do? What did I do? Why are you making him suffer for something that he couldn’t have possibly done? Look at him damn it………he doesn’t deserve this crap. He doesn’t deserve to have to work his little butt off everyday and still NOT be able to do what a 18 month old should do. WHY ARE YOU DOING THIS?? I apologize if I offended anyone in writing this. I do believe there is a God, I just don’t always understand why he chooses to do the things he chooses for some people. (ex: Daniel and his Grandma). I know there are millions of people who are worse off, or have had tragedies in their lives. I apologize if I seem negative about Daniel. I am not. I love him with all my heart and all I want is the best for him and I will spend the rest of my life doing WHATEVER it is I need to do for him. This is reality, this is the reality for Daniel….and I try to remain positive and keep looking for additional ways to help him……it is all going to be a very very hard road, but it will be one that he will never travel alone because I won’t let him. I will be standing next to him when they are pushing him to hold his head up, or push with his arms. I will be his voice, I will be his guide, and I will be strong for Daniel……and he will know… is all going to be ok
Ok I’m done ranting and raving. Its just one of those days