We have set up a separte blog page for people to follow the Robert Dautrich Benefit Fund. Anyone neeing additional imformation can either contact Heather at 240-682-1503, Bill 240-682-0741 or by logging onto rdbf.org and all the information is listed there.
As most of you know Bobby is getting bigger and is quickly reaching the point where he needs to be transported in his wheelchair. The only draw back is that due to the medical bill from both boys we are not able to afford a van to transport him. We are setting up several benefits to help raise the $6000.00 needed to purchase the van. We are selling Joe Corbi’s Pizza and doing a special fund raiser with the Southern Maryland Blue Crabs on Sept 5, 2010. Anyone wishing to send a donation can do so by send it to:
Maryland Bank and Trust
Deposits: Robert Dautrich
PO BOX 248
Waldorf,Md 20601
Acct Number 1180162724
Wow till I logged in today I didnt realize how long since my last post. It has been a busy busy summer. I have been taking care of my gma as she is recouping from hip surgery. The boys got to attend Camp CO-OP this year. They had a BLAST. Hopeful next summer they will get to go for the entire 4 to 5 wk series. Bobby came home everyday with a big smile on his face and happier tha I have seen him in a long time. The structure was good for both of the boys and gave me a little break.
This coming week Billy, aka our “Little Ticker” will head back to the pediatrician for follow-up on both his Asthma and his Lymes Disease. As for the Asthma, he seems to have learned very quickly when he needs a treatment. We leave the nebulizer in his reach and leave it up to him as to when he needs a treatment or not. Billy will now bring us the nebulizer and tell us he needs a treatment, so we will check his lungs and sure enough he will be wheezing like a freight train. He is so funny he insist on being independent and setting up his own nebulizer. Kinda of funny that he is able to do all that with the schools saying he is Mentally Retarded.As for the Lymes he is almost at the one month mark so it is time for round two of the blood work to see where his levels are at. Hopefully they have gone done and we are done with it. If they havent then that could mean a strong antibiotics for another 30 days. We will see.
Last Thursday Bobby had a appointment in what we thought was Cerebral Palsy Clinic at Children’s Hospital in DC. Once we got in the exam room we learned the the only part of his medical team we were seeing that day was the Orthopedic Team the Cerebral Palsy Team was not available, which were the doctors that Bobby was supposed be seeing. The resident came in and started examining Bobby and promptly got a concerned look on his face while examining the leg. I was not prepared for what came out of his mouth next. He told me that it appears that the Cerebral Palsy that Bobby has from his injury in 2005 has progressed and was now effecting his muscles in a negative way. He found that Bobby’s hamstring muscles and muscles in his knees now have contractures, which means that the muscles are tightening up and not releasing the way the are suppose to. He said that he would need botox injects and if that doesn’t work that he will require surgery to release the muscle. Talk about your head spinning. Next the actual Orthopedic Doctor came in and she also examined Bobby and confirmed that his muscle do in fact have contractures and that his over all muscle tone has also been effected. She confirmed everything that the resident had told me and said the yes he needs to do the botox inject , which means every six months we will go to CNMC where Bobby will be sedated and given multiple injections into the effected muscle, and will need a medication called Baclofen which is a type of muscle relaxant. The hopes is that this course of treatment will work because the next step if it doesn’t work is the surgery. I was informed that we need to try and get Bobby to the age of 9 years old because if the surgery has too be done prior to that age then there is about a 99% risk that he will have to go through birthday surgeries, which is where they will have to repeat the surgery every year until Bobby stops growing. We are awaiting a appointment with the Cerebral Palsy Team. Our wonderful Orthopedic is being nice and trying to get us an appoint asap. So everyone keep their fingers crossed and that the botox and medications will work, the thought of him going through surgery is just terrifying as given his medical history he will more then likely have to go back to PICU. No offense to the wonderful staff in PICU but would rather not have to relive those memories. If anyone had any thoughts on the botox injections please feel free to comment. We are still uncertain of what to do.
Well we have yet another new diagnosis in our house. Two weeks ago the school sent home a note stating that Billy had a tick embedded behind the left ear and what to watch for with Lymes. Well Thursday morning he woke up with a rash all over and the spot where the tick was raised and looked infect so off to the doctor we went. First the doctor tells me that Billy is now full asthma, then that he had a skin rash which is a reaction to something but no clue what. Third she told us she was concerned about the tick bite and order the blood work for Lymes Disease. Well if you had not guessed it by now Billy has Lymes Disease. He is on antibiotics for the next thirty days and has to do followups with the doctor and lab. I tell you there is never a dull moment in our house.
Bobby is doing GREAT. He continues to do a little something new everyday. He is still beating the odds. We are in the process of getting his equipment upgrade so that it is fitted to him properly. We were recently to HSC and measured for a new bath chair, carseat, and hosptial bed. The lovely staff at HSC and REP handle everything for me so all I do is sit back and wait for the girls to tell me that the people at the insurance companies are not playing nice. Bobby still has multiple appointments coming up. With the swine flu and the crazy winter we had, we had to put doctors appointments on hold. So will try to post updates after each appointment.
Billy continues to grow and make progress with all of his disorders. He has had rough road at school this year. The child actually got suspended for beating his aid up this year. We were given a Behavior Specialist through the ARC. The specialist actually clued into who Billy was very quickly and what he had to say made a lot of sense. He was the first one to make the suggestion that though Billy does have multiple medical conditions his two biggest problems are that his epilepsy effects his temporal lobe of the brain which makes it hard to process his environment all the time and post traumatic stress syndrome due to Bobby’s accident and the craziness around it. He had a lot of good suggest which we have implemented and most days life is a little bit easier.
Wow, I didn’t realize just how long since I had updated the boys website.I am really behind. It was a busy and long winter. I swear we had the snowiest winter I can ever remember. Over the next couple of days I am going to try and get everyone up to speed so visit often over the next couple of days. Visit the boys pages, hopefully by the weekend I can get some current picture of them up.
“Life is not always greener on the other side of the fence.”
I have to be honest I dont know who to credit for this quote.
I have often heard the phrase “Life is not always greener on the other side of the fence” but I still cant help but wonder if it is a false statement. Don’t get me wrong I love my boys and would not trade them for anything in this world. I would however like to just for one day see what it was like to have normal healthy kids. To for just one day know what life was for just one day not have to fight with my 6 year to get him dressed for school in the morning or to have him not beat us because he is in the midst of his 15th meltdown of the day. To just for one day not feel isolated because you are afraid to go anywhere because you don’t know when the 16Th meltdown of the day will come. To just one day not have the guy in the post office make the comment “In my day we would have just beat our child” and to be made to fell like the worse mom in the world because no matter how hard you try you get cant get your son under control during a 10 minute trip into the post office. I just cant help be think and believe that life without special needs child cant possible be as hard as a life with them. I also cant help but wonder if thing are so hard on us, just how hard is it on the special needs child. As an adult we are able to express our issues but as a child they are just able to cope with what is going on inside their heads. I know that it has to be frustrating to go through life without the ability to properly express your needs and wants but I still have to wonder if life is not just a little greener on the other side of the fence. People are so quick to pass judgement on us in public places. I would love to have the courage to tell them if you think you can do better then by all means step into my shoes and life a just one one day in my life. Once you do that then just maybe you can pass judgement.
