Connor has started his therapies. I was so worried that we wouldn't get them started before he went back into CHOP. After every admission he has gone from a loving easy going little boy to one who is scared of everyone but his immediate family. I am hoping that having him get used to his therapists before the hospital stay he will not have such a hard time accepting them in his home after. I knew that if we waited to start this till after we got home things were going to be much harder. He seems to really love his therapists and has connected with them very quickly.
It looks like he is going in to CHOP on Tuesday 7/1/08 for his IVIG therapy. We were all hoping it would get started earlier but 6 days after Connor's spinal tap he woke up from a nap with a 103.8 fever and it only climbed to 104.2 in the pediatricians office. So, things are a little more behind than we hoped at this point because he had to be healthy before they could go ahead with the IVIG therapy. We still don't know if he is getting the 2 day or the 5 day infusion. From what I read the initial treatment should be 5 days and any booster treatments should be 2 day. But, who knows what they are planning. If we are in for 5 days then Connor, Joe & I will be in the hospital for the 4th of July. What a bummer!
In the beginning of all of this I had people mention having fund raisers to help us with all of this. I wasn't ready to say go ahead yet. I don't know if it was because I kept hoping that everything would end at any time and Connor would be all better. Reality and the bills have set in! Now that schools out (Julia's teacher offered to do some fund raisers) I have decided that we have to do something. I just don't know how to do this, when I can possibly find the time to do this. Is it OK for a person to throw a fund raiser for themselves? That's something to think about. Anyone with any ideas on how to do this or what to do please, please place a comment. I really need help here.
Keep Connor in your prayers while he goes through this. Pray he doesn't have any major side effects like anaphylactic shock or meningitis. And let's not forget to pray that this will work!! Please God something has to give here. Let this work!!!
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2 comments:
Hi Kim I still am keeping up with your son and I can't help feeling so bad about you stiutation. I have one question for you though has Conner been checked for OMS i can't help but believe this is what he has by no mean am I a doctor but everything you are explaning is the same story all us parents share about OMS. Getting him dignosed and treatment started right away is critical in the outcome of these children. Did you go to www.omsusa.org and take a look at his website. Please contact me if you would like so that I could talk with you. My e-mail address is tarawoodman@comcast.net. I think it was about 3 months ago when I found your story on wrongdignoses.com and when I read your story about your son my heart hit the floor I felt like I was reading my story of my son. My son had been on treatment since aug of 2007 and is doing well and has returned to ""NORMAL""". Please contact me so that we can talk. I pray for your son everynight.
Tara
You can also contact me though my sons website I check it often
www.makhiwoodman.blogspot.com
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