Monthly Archives: September 2008

2008 1st Benefit Dinner – Thank You!

…….THANK YOU SOOOOOO MUCH!!!!!!!!…….. There are not words to say how thankful we are for everything you all have done for us. It was great to see everyone at the benefit. It was great to see so many of our friends and family that we have not gotten to see in such a long time. Please keep in touch. The traveling was a little ruff. Jocelyn just has trouble being in the car for so long. But we made it back! She is working on getting back on schedule. She has just been real sleepy. The doctors appointment with Dr. Back went well. We were glad that we were able to meet him. He was able to confirm a lot of what we have learned and have been reading about. He also gave us some recommendations and answered our questions. Over all we had a great weekend. Thank you again for everything!

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Heading to Dr. Bach and Maryland

So far, So good! We are packing up. We are very excited to visit with Dr. Bach and to get to see so many of our friends and family at the benefit. Please keep Jocelyn in you prayers as we will be traveling such a long way and we will be around lots of people. We pray for safe travels, a wonderful visit with friends, family and Dr. Bach, and most of all for Jocelyn’s health, also for our puppies who will be left alone for the fist time ever (We have people checking in, but it’s not the same. They are our babies too). We are getting close to that time of the year and we just want to be sure we keep her well. We will see most of you soon. Lots of love! The Lee Family

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Sept 2008 Status Update

So.. It has been a while. I am sorry. There just hasn’t been too much to write about. Same old, Same old which is always good around here. Not to mention our computer is sooooooo slow. We are just trying to get everything ready to be able to make the trip at the end of the month. I have been crazy on the telephone with doctors offices and caseworkers. You know it is a shame. They all probably think I am absolutely crazy. But if I’m not it is ten times harder to get what I need for Jocelyn. To sum it up we have been trying to line up the Synagis (RSV) shot for Jocelyn. We had been discussing it and finally after a great recommendation decided to switch pediatricians. The one we wanted to switch to has a 16 year old boy who has SMA. We assumed this office would have great resources and contact info for us. You know what happens when you assume. So anyway the new office calls and tells me that Jocelyn doesn’t meet the criteria to receive the shot. Well we all know she needs it she is only 16 months. It is most dangerous in children under 2 and the complications from getting the virus could be fatal to her. She just can’t fight of illness like we can. They asked for her to come in for an evaluation. But she also turns 18 months Oct.22nd then needs to go in for the shots. Sooo I don’t want to expose her to the doctors office during one of the sickest times of the year that many times in a month. I understand to become and “established patient” I needed to go in before they could proceed. Then we were going to combine the next to appointments. But they kept saying she didn’t meet criteria for the RSV shot and they don’t know her yet. My opinion was that whether you know her or not you know what she has and I felt they should have known how much she needed this shot. I just wanted to hear the doctor say. I know she needs it. Bring her in and we will go from there but instead it was “She doesn’t meet the criteria”. It is a shame because I heard lots of great things about the doctor we were trying to get to but for some reason I guess it just wasn’t meant to be. The office manager said “not that I am trying to turn away patients but if your previous doctor was willing to do this why are you trying to leave.” She also said they weren’t going to lie for me to get the shot. She just couldn’t understand that Jocelyn needed this shot and I wasn’t asking anyone to lie for me. Luckily the pediatricians office that I have been at is willing to do this for me they have been a great help. I was only going to switch because I thought I found someone with more experience. But the current pediatrician and I even if we are learning together they show compassion and care about Jocelyn. So we are staying put.

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