What a busy week we have had

Well it started Monday with a trip to cleveland for Preston's mapping on his cochlear implant. He did great with the car trip both ways he usually does. He love to go by the big trucks on the road. Before we are passed by one he is stretching his neck in his car seat looking for another one. Mommy even got him to pull his arm down wanting the trucks to beep. He got it on his first try. We did another booth test and he passed once again. It is hard to believe that he was hearing at about 90-100 decimals before he got his implant. And now with his implant on he is hearing at about 25-30 decimals that is almost normal hearing. He will always be considered a deaf person cause the only time that he can hear is when his implant is turned on. He has been keeping me pretty busy this week. I can't believe what all he has been doing every day is something new. At this rate he might be walking before next week. Ok maybe not but it seems like in no time at all he will be crawling. He is a little boy and is curious about everything so I know when he gets to moving more we are in trouble. He is not scared of the kitchen anymore so he likes to play in there by himself. Yesterday he found out he can get up on our little stoop and lay on it then roll off of it he thought that was pretty funny. Not sure why since it is about half foot drop. The last couple of days he has also been getting up on all fours more but then pushes himself back to where he is sitting. i even noticed yesterday that he is starting to test himself. It is so cute he will be sitting there and then let go with one hand and try to push him self back further. He is trying to figure out how sit without using his hands. He is amazing me everyday. We also got his stander this week which we have been waiting on for months. I was so excited. I like it and so does he for the most part. It is kind of hard to put him in by myself. Last night Scott and I put him in it and pushed him around the kitchen in it he thought that was funny. Maddie is her usual self and into everything. But she is so cute when she does it and gets busted she gives us this goofy look and we try not to laugh at her but sometimes it is hard. It has been a crazy day today they both have coughs and won't take a nap. Daddy is in for a fun night tonight. Mommy will be at work dealing with all the people who are mad because they can not find graduation stuff that they need. I also caught Preston trying to pull himself up in his crib this afternoon. He was on his knees and his hands were on the side of the crib so he was tall kneeling. So I decided to lower his crib mattress before he gets hurt. Also had to screw some of the screws back in. Since he likes to kick the crap out of his crib. I will post pictures soon.

More good news about Preston

Ok it must be Preston week or at least mommy thinks it is bragging week about Preston. I don't even know who all reads this blog but not sure if I care. It lets me express whatever I am feeling if that is good or bad. it gives me somewhere to gather my thoughts and i really need that at times. Well Preston had an appt today in Akron with his cerebral palsy doctor. She was very pleased with him. No more botox in his legs for now which is great just increasing his baclofen which is a muscle relaxer but it seems to be doing the trick. She was pleased with the pictures I showed her of him sitting and stuff cause I knew he wouldn't do it there. But he did show her that he could army crawl which is pretty good. He also stood for her with me help. He does have to get new leg braces which he really have to start making him wear them when he gets his new ones. They help him stretch out his ankels and hopefully keep his toes from curling so much. I am happy with the progress he has made and happy that she thought he was doing great also. When you are so used to going to these appts and all of them being something bad or at least most of them. It is a great relief when he go and have a good appt. He now has to be seen my an orthopedic doctor for his hips. Children with cerebral palsy exspecially his kind and that are not weight bearing have a high change of hip damage which might require surgery in the future. It might not also which is what we are hopeing for of course. So they will start seeing him at the end of the month and will start taking x-rays of his hips every so often to keep an eye on them. We still haven't got his stander in yet which is ticking me off big time. I am suppose to be doing all this stuff to help my son and I can not get the stuff to help him. Anyway that could be a whole different post in it self. We have the 2 year NICU follow up at the end of june which has me a little worried. Madison might have cerebral palsy also but a mild case of it. I don't know how I can have three kids and all of them have some form of cerebral palsy. It does not seem possible or right in so many ways. If she does have it is not affecting her alot but she is having some trouble with small things. I know my trio were born very early and that has caused the issues we have. But it dosen't seem fair in alot of ways. Oh well I am thankful for what I have and everyday I had with Hayden. We miss him so much and it isn't getting eaiser with out him.

Preston is doing amazing!

Preston has been doing awesome lately. He has really came along way in the last year. I am so very proud of him. He has to work alot harder then others do with alot of different things. But he is a fighter and he is going to do it. He is going to do whatever he wants to in his life he has so much determention. It surprises me that such a little guy is willing to work so hard. It is great that he wants to work this hard that is what is getting him to were he is today. This week he has really worked alot and I got a feeling not much longer he will be sitting up on in own and hopefully will soon be crawling. We might have awhile before he crawls he has to learn everything. I know other people with cerebral palsy and the best way they have explained it to me is that they have to think about every move they make. They can not just get up and walk they have to tell their legs left leg move right leg move. So he is going to have to train all of his body to do that with crawling. I am really proud of him and I know that the day that he starts crawling we will probbly have a big old party or do something extra special for him. I know that it sounds silly to most but to us and to him it will be a huge achievment. He has been pulling himself up on some mats and stuff this week and then propping his arms on them and sitting. it is really cute it is not the proper way since it is what they call sitting in the W, which is bad for their hips. Well his hips has a high chance of going out anyway since he is two and not walking or barley weight baring. That is not our fault. We ordered him a stander months ago and if it isn't one problem it is another. The other day we were suppose to get it and U.S. Customs I guess held up his stander for two weeks. Heaven's know why they probbly took it all apart or something to see if it had drugs. Who knows what them idiots were thinking. You can tell that it is equipment so thanks to them we are waiting even longer for his stander. Which is hurting my son more and that ticks me off. I keep getting told to do this and this but i can not get the equipment to do it. Anyway here are some pictures of what preston has been doing this week. Go Preston Go

Hayden's one year angel day

Ok it has been a couple days since the one year since my son has went to heaven. It was on the 15th of May. It has been crazy around here with Preston's hearing device and some other things. The day was awful to say the least. i pretty much felt like I was in he-- all over again. It started Wensday night and didn't end until Friday. I would cry at everything. Man I miss my big guy very much. It is hard to believe that a year from tomorrow will be the last time I got to kiss him and see him. Yes that is when he was in his casket but i could still see him. I wonder all the time what he would look like today and of course of what he would be doing. Scott took the day off of work so that helped a little. I didn't want to be alone that day. Then we went and got some ballons and flowers to take to his site. Some of my family met us at the cemetery and we had a ballon release for Hayden. Ok everytime we do a ballon release it seems to be real windy so the same thing happened Thursday. We also found out when you have about 8 people you can not keep about 30 ballons from getting tangled up. They all had tags on them and several got stuck in a tree across from him. Scott always jokes around and says it is Hayden getting excited that he is getting ballons and can't help himself so he gets them all tangled up. Which if you knew my son when he was with us if he wanted something he wanted it now and you better have it now. Here are some pictures from the ballon release.

Getting the ballons ready



Off they go





Some stuck in a tree and they are still there three days later

Preston got his ear turned on

Ok so not really his ear turned on but that is what we call it. He got his cochlear implant turned on today what a fight that was. He didn't like being messed with at all. He dosen't like things on his ears so that dosen't help. But once we got home it went a little better. We picked maddie up from my parents house and put his implant on. Right now their is nothing on his ear he wears most of it on his back. Then the coil is on his head. We have to put it on alot cause of him being on the floor so much. It comes off pretty easy. But then we took the kids to the grocery store on our way home and kept it on him and he kept it on the whole time. If i can find a way to keep him busy for several hours a day i would have it made. It is when he thinks about it that he remembers it is there and pulls it off. But we caught him several times in the car trying to put it back on. That is awesome to see so soon I am hopeing that he catches on real quick that this is to help him hear and that he will love wearing it soon. He wants to talk so bad and this is going to give him that. There is a part that is called the processor that also has batteries hooked to it this is suppose to be on his ear since it also has the microphone in it. This is the part that right now we are hooking to his back. Then the coil is the part that hooks to his head or it is attached by the magnent that is in his internal part. We really do have high hopes for this but I know that it is going to be a struggle for awhile. But I am hopeing by this time next year that we will be able to tell him to shutup for awhile cause he will be talking so much. I am just kidding at that part. it was alot of stuff to take in and alot of parts and stuff. We get two of everything basically that way if one breaks we have a backup and all this stuff. So it was alot of stuff. But like I said it will be worth it. I will add pictures the next couple of days didn't really get any good ones today. He didn't like it so it took scott and i basically just to keep it on his head while they were trying to test it and program the device. So pray that it goes better for us this coming monday when we have to go back to cleveland and get it mapped again. The mapping basically tells the audiologist what he can hear and it sets the device so he can hear the right levels. Post more later.

My new tattoo

I just got a new tattoo of my angel Hayden. It is bigger then i was expecting but i love it. Cant wait until the redness goes away and I am sure it will look better. But i love it. It took a while to do and was painful but so worth it.

Tribute to Hayden

I just put a slideshow together of Hayden in honor of his angel day. I know i sent it to most of you but who I didn't just copy the link below and go watch. I think it turned out really nice. It is long but i think it is worth it. Oh yeah go grab a box of tissues. I love you Hayden and until we see you again all we have is memories but mommy will keep them going until i am with you. Love you



http://www.youtube.com/watch?v=8kNUulEIPvA