Discussion in 'The Watercooler' started by klmno, Nov 10, 2010.

  1. klmno

    klmno Active Member

    I'm waiting as patiently as I can for an update! I hope everything went/is going well and that you finally get some answers.
  2. susiestar

    susiestar Roll With It

    We just got home!! When we stopped at a hotel last night I was so sore there was no way I could get into a hotel room if I had to climb stairs so we ended up at a very small family owned hotel. It was nicer than any motel 6 but it did not have any internet connection.

    We really LIKE the doctor. He LISTENED. Did not look at the stuff the other docs sent at all. Spoke with us both, took LOTS of notes and says he has a couple of ideas off the bat that he thinks will make a big difference. He took all the notes on a laptop so there is no chance he will scribble stuff down and not be able to find it or read it later, which I appreciate a whole lot. The other docs we have worked with have all made notes and then lost them in the files or on desks or somewhere, so this was nice to see. The people at the office were super nice.

    We are making NO changes right now. He is going to get all the approvals and scheduling done and then Jess will go back to the hospital in Dallas for 1-2 WEEKS for complete testing and therapy and help. 24 EEG, another MRI because he didn't like the quality of the one they already did, complete neuropsychologist testing, and work with the rehab department, OTs, etc.... He wants to get it all done at once so that we can get some answers and some real help rather than doing a piece here and a half a piece there and not really getting answers or help for her.

    I am very excited, and somewhat worried. It will be hard to spend 1-2 weeks away from home with her, but I am NOT going to have her in a hospital with-o a parent.

    The trip was relatively uneventful. My problem on the way home was my knees and legs. They first got really stiff and then my left calf locked up so I couldn't straighten my foot much. But we made it just fine. On the way home we stopped at what was advertised as an outlet for a chocolate company here in OK. No way was it an outlet, just a company store. they have decent chocolates and Jess really wanted to go there, so it was a nice stop. Fairly fast, easy to get in and get out. We also stopped at a place that makes fried pies. I haven't tried them yet, but I have wanted to stop there since I was in college. I used to drive past when my folks would take me to the university and when we came home, but it was not ever open when we stopped. So this time it was open and Jess and I got a selection. We are waiting until after dinner to try them.

    Thanks for all the good wishes, prayers, etc... I think we may have found the right person to help us figure this out.
  3. KTMom91

    KTMom91 Well-Known Member

    So glad the doctor listened, and has ideas already. Keeping Jess in my prayers...
  4. klmno

    klmno Active Member

    This sounds pretty promising. I'm sorry she'll have to be there for 2 weeks, too, but I guess if it leads to answers and appropriate help, it beats living long term with painful struggles.

    Do you remember a long time ago I mentioned a family who's young daughter (years ago) complained and the pediatrician wrote it off, the mom pushed to see a specialist who detected a brain tumor but it was not the typical kind so she had to get a special team of pediatrician expert brain surgeons to operate on her. Anyway, they went to a hospital in TX and the mom stayed in a Ronald McDonald house and the dad went back and forth so he could still work some while the daughter was going thru that. I'm not mentioning that because Jess might have a brain tumor so don't start worrying about that on top of everything else- I'm just wondering if this is the same hospital. If it is, I'd say you definitely have some great dr's.

    I've never tried a fried pie but that sounds pretty good. What kind did you get?
  5. Mattsmom277

    Mattsmom277 Active Member

    Well that is the BEST kind of update! Sounds like all your concerns with previous docs re: anxiety being blamed, can be finally put behind you and Jess. I'm so glad to hear that! And sounds like this is probably the right approach. I can't imagine planning 1-2 weeks away will be simple, however what a great approach to be able to do test after test as needed to rule things in and out. This is the step in the right direction. I"m thrilled for Jess.
  6. Jena

    Jena New Member


    that sounds great! and u two got to make a few pit stops on the way. so she'll go before or after holidays for all the testing?? i dont' blame you i wouldnt' leave here there either for 2 weeks. can you stay at the ronald mcdonald house???

    glad you made trip safely and glad they'll bang out all the testing under one roof.
  7. susiestar

    susiestar Roll With It

    I will try to stay at the RMD house. We were supposed to stay there last night, it was supposedly "approved" but then suddenly they didn't have room so we headed home. I wanted to stay there in the hopes that Jess could spend some time with other kids, regardless of their ages. I am sure I will be at RMD a good part of the time and with Jess in the hospital the rest of the time.

    I don't know exactly what will work out. I am frustrated because we got home after the office had closed at the hospital. I had a call that left a garbled message twice and when I try to call it back I get user busy or a strange high pitched tone, but not like a fax machine. I don't think it is the area code for the hospital, but with my phone luck it was the doctor and they watned her there today.

    Of course the doctor told us it would be at least a week before they could get her in, but docs know their own schedules about as well as they know how to run a Tibetan Yak Farm. At least the docs I know anyway! I will call tomorrow and find out if it was them or not. I don't think we will be waiting until after the holidays. Not if there is ANY way to do it before then.

    For US it would be excellent if we do it before husband gets a job. His interview went well and we don't know when they will make a decision. The 3rd person on the committee remembered him from the dorm (they were friends eons ago in the dorms) and he knows that at least one of the 3 really wants him to get the job. The boss seems to like him and it sounds VERY promising. But that might mean we don't qualify for the state insurance. The state ins pays 100% of EVERYTHING with very very few hassles. Private insurance would mean we pay at least 20%, which would be financially devastating. So I would like to do this very very soon so that we don't have to worry about that.

    I don't doubt that anxiety plays a role. Not at all. It just isn't the ONLY factor, which is what the other docs insisted. The MRI they did last year showed no tumor, so we have no fears of that. But what the report from the doctor who read teh MRI wrote is quite different from what the neuro told us teh report said. There WERE a couple of spots that were "atypical" and could indicate certain things, NOT just a blip on the pituitary that is supposed to be there in all kids. We were given the "blip" story and told that the radiologist wasn't experienced in reading pediatric MRIs. That is NOT what the written report says (I found a copy of the report in the letter the doctor gave me to deliver to the doctor in Dallas) or what the radiologist's office said when I asked them about his experience wtih pediatrician MRI's.

    So my trust in the neuros we have seen here dipped even lower after this. I didn't think it could! But we are quite sure it isn't a tumor, at least.

    It might be the same hospital. it was awesome. Very child-friendly, even in the office building. The waiting room had some big machine about 10 feet tall that had balls going up and down and doing all sorts of stuff, kind of like that old game mousetrap. All kinds of toys and manipulatives in baskets and bags in the waiting area. EVERY waiting area had a FULL cart of books donated by Half Price Books (they collect year round and stock hospitals with books for kids that customers have donated) and they had 3 monitors hooked up to video games. the controllers were stationary, like the demos are at the stores, so there were no cords to step on or things to get stolen. The kids playing the games were ALL great about letting other kids take turns, which amazed me! The level above the doctor office had a big area with vending machines and it had touch screen systems with info about the hospital, hotels, things in the area, ways to contact various offices/people for various things in the hospital system.

    It was even more impressive than the children's hospital in Cincy, which is pretty darn impressive.

    Even more amazing than all of that -- the employees were smiling! ALL of them, even the janitors and security people!!! Every single person who worked there was SMILING. We went over to the hospital side to see the gift shop and to see what it was like. I have never been in a hospital or doctor's office bldg where every person on staff was smiling. Not just nice, or pleasant but SMILING and meaning it!!!
  8. Hound dog

    Hound dog Nana's are Beautiful

    Wow Susie! Sounds like a fantastic update to me! This guy sounds like a big time keeper. :D
  9. AnnieO

    AnnieO Shooting from the Hip

    Wow, and here I was going to say something about Cincinnati Children's... But you know? I am beyond thrilled that this doctor is actually LISTENING. in my opinion, the parents know way more than any counselor/doctor ever could - because we LIVE with them. We see DAY to DAY.

    I'm happy for you and Jess right now... I can't wait to see what the issue REALLY is!!!