Well I am not so sure I know where to start, we received a wealth of information in a little bit of time. I learned some good stuff there the most important one being it goes not matter where you live and who you see unless you your see a specialist or you are lucky enough to live near a specialist for primary care, get ready to study.
I thought my cardiologist were terrific and do not get me wrong I still do but the things that Dr, Rome was telling us about Tatu’s heart condition were scary as well as informative. He wanted to do a echo ( Tate laid still for a good hour for the Echo Tech, we were all so impressed) and try to get disc’s of the two prior caths before he could give us his full opinion. We are waiting to conclude to with him over the phone. All our Cardio office sent was the report from the cath in June...LOL I am overjoyed with the sharing of information between Dr.’s offices.
This brings me to the next big thing that I just learned...I am going to copy Tatum’s file and from now on there is not going to be a report written that I do not receive a copy of. If I have to pay extra for discs of her past and future caths and MRI’s then I’ll be doing that as well. I do have some stuff in a file at home but I want everything. This way you can go see whatever doctor you want and noone has to know or be bothered with getting your child’s record. When dealing with my kids there is no room for admin errors so I’ll be doing it myself...hehe
Our OT and PT are awesome...you were right on track with eveything CHOP told us. They actually said to keep listening to you all and we are doing great. Tatu showed off all her baby moves to everyone that would smile at her.
more later...
3 comments:
That is AWESOME that you had a great experience and got all the info. We're not supposed to go to the William's Clinic until Brady is around 18 months, so I wonder if there is ANY cohesiveness around the country on when to do what with your WS child. I think it's good we all have each other to compare notes with.
Love -K
I am so glad that you now have a wealth of information. That information coming directly from a great doctor, is almost impossible to come by. I will now be more interested in getting Daven to see a WS specialist. Or possibly, go back to Denver to see those doctors again. I can't wait to hear more!
LOVE YOU!
Lisa, you continue to Wow! me with your ability to charge forward, learn quickly and adapt in the face of difficulty. Did I read that you're a Taurus? ;-) And, "Go,Tatum!"
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