The Quest May be Near an End!!

The quest for a doctor at this base that seems to listen and be concerned about the patient's history and parents' concerns may have finally come to an end!!  Whooohooo!!  We have had numerous issues since we arrived here with the Pediatric department from having referrals somehow go missing and not being followed through with, to incorrect notes in Addison's medical records, to questioning whether she needed audiological care on a continuing basis (this one still quite frankly astonishes me as she was sitting there with her  hearing aid on during that appointment).  We also had not had any success having continuity of care for Addison within a reasonable amount of time for routine/well/referral visits (my thought is a 3 week window should be sufficient and that more than 6 is not really appropriate!).  We really liked the audiologist on base, but had to have a team for audiology since the on-base audiologist couldn't service Addison's hearing aids, and now can't see dependents.  There have been concerns about Addison's weight since 9 months, we have seen nutrition, we have added calories in every way we can think of and while she is gaining weight it's been slow.  She also hadn't added much length wise, until today!!  Whoohoo!  But Addison's head circurmfrence went from the 50% to below the charts and continued to be below the charts.  This was concerning to me, it didn't seem normal at all. 
Today was Addison's 15 month well check, rescheduled since we missed last week's (due to their error not ours!).  I had a list 3 pages of concerns and questions for the doctor and was apprehensive about the appointment.  My confidence and trust in this pediatric department was not great.  We had seen 5 doctors and none of them had gained my trust or not had at least 2 mistakes/errors.  I honestly think Mike was afraid that the appointment was going to be ugly - all I would promise was not to yell at or punch anyone.  We went in and after the initial measurements from the nurse and a potty break for the boys, the doctor came in and asked if we had concerns (after telling me she was sorry for running late, but wanted to see if Addison's PCM was available since that would be best as her PCM would know the history better - which would be true if we had regularly been allowed to see her PCM and I was okay with us not seeing her PCM, our last visit wasn't as successful as it should have been).  I explained that I had several concerns and issues, some relating to the continuity of care that Addison was not receiving but should be we felt.  Not only did this doctor ask questions about follow up things the genetics department wanted but wanted to ensure that Addison's ear molds were still fitting well.  So finally a doctor who had at least reviewed her records but seemed to care.  We chatted about our concerns and what was being done currently and she examined Addison and made sure she had Addison's chart so that her measurements were accurate for growth for at least 30 minutes.  The boys were patient mostly, but each had a minor melt down (it had been a long day with very short naps, and let's face it waiting for doctors is hard for anyone, so I was pleased overall with their behavior).  The melt downs didn't seem to phase the doctor, she remained patient and listened to everything we were concerned with.  I really felt like I could have kissed the lady!  She agreed that Addison needed continuity of care, that it was not unreasonable to request this and gave me the names of the nurses to call and speak to for all her appointments.  She wanted to follow up on the test that the genetics clinic had requested (pee sample) but felt it was easier to run the test here and will call genetics to make sure all the test that they want are checked.  She also asked about the low iron levels and wants to follow up on that soon.  Wanted to make sure the endocrinologist had what he needed from her records.  As for Addison's smaller head than normal, she wanted to have neuorology follow up with that and make sure that all was okay especially since there were notes from genetics about concerns with the smaller head and possibly worries about Addison's frontal lobe (these hadn't been shared with us before, but apparently were available for all the other doctors even though no one wanted to follow up with it...ugh!). 
I'll be calling tomorrow to switch Addison's PCM - hopefully to this doctor who I really liked and will be at the base for at least another 3 years but if not she told me of another collegue that we would hopefully find very comptent and was someone who works with special needs cases regularly and will be here for awhile too.  I am so relieved, the weight that has been carried around for the past couple weeks (especially since our meeting with endocrinology) has been lifted.  Just knowing someone is on our side and has her best interest in mind has made a world of difference.  What an answer to prayers!  Our road still seems to be stretched out ahead and the forks and road blocks potentially are many but Mike and I are confident that God is going to continue to provide the wisdom, strength, and grace we need to handle whatever it may lead to.

And just in case anyone is  interested here's the list of specialist that follow or have been consulted for Addison's care

-Audiology
-ENT
-Speech Pathologist
-Endocrinologist
-Nutritienist
-Genetics
-Cardiologist
-Early Intervention
-Neurology

The list can seem a bit daunting, some days it is easy to feel like it's a half glass kind of scenario - but most days I look at it as a glass half full or more - we have insurance to cover these doctors and people who are trained in various specialties looking out for Addison.