Wednesday, April 11, 2012

More "-ologists"

The twins exploring the doctor's office. 

Today the twins went in for their 2 year well-child exam.  I was expecting to go in and talk about how great they are doing.  My only concern was that we needed to get a follow-up swallow study ordered for Cade to see how he is doing swallowing/aspirating.  I think he is doing much better.  I would like to know if he can start drinking from straws and open cups safely.  My other hope was that Camdyn would finally reach the 20 lb mark. 

Camdyn did not reach the 20 lb mark.  She is 19 lbs. 11.5 oz.  She is no where near the 3rd percentile line shown on the growth charts.  She is well below it in what would look like a negative percentile if such thing existed.  In fact, she is now further from the 3rd percentile line than she was before; however, she has gained weight.  She has gained one pound in four months.  Due to her numbers, she was diagnosed with short stature.  This means she is below the 2.5% on the growth chart.  In other words, she is little bitty.  Our pediatrician referred us to an endocrinologist to check her hormone levels, etc. to make sure everything is working properly.  

We discussed her speech delay and the drama I have had with getting our stupid insurance to cover speech therapy.  Our ped wrote the following notes in Camdyn's charts, "I think that it is extremely concerning that the coverage feels in direct conflict with my clinical judgement that indeed she does have a history of CVA and despite her history should not be treated any differentially than another ICH patient."  He has referred us to a neurologist to check if her speech delay and expressive speech problems have anything to do with something in her brain.  I think and hope that this is just a precautionary measure.  I also think he is just trying to help us get some sort of neuro diagnosis to help with getting our ridiculous insurance to cover speech therapy for her.  How's that for crazy?  A mom actually WANTS a diagnosis for her child just to get her the help she needs.  It's absurd.  It shouldn't be this hard to get help for a child who was born 16 weeks early weighing only a pound who suffered from a brain bleed.  In fact, I don't know if I have ever heard anything crazier!

Cade weighed 25 lbs today.  He is between the 10-25% for weight, and nearly at 50% for height. 

In addition to the news that we now are adding 2 new "ologists" to our list of "ologists" we have seen, I found out that both Camdyn and Cade have ear infections.  I had no clue.  They weren't pulling on their ears or anything.  I guess they have developed a high tolerance for pain.

Let's take a look back.  We have seen neo-natalogists, otolaryngologists, opthamologists, cardiologists, pulmonologist, gastroenterologists, audiologists, and now endocrinologists, and neurologists.  (not to mention PT, ST, OT, development specialists, and pediatrician)  I joked with my sister that the only kind we haven't seen is the "big toe-ologist".  As soon as I said it, I thought I should take it back before someone breaks their big toe!  I am aware that we are very lucky even if we have seen all these doctors.  Overall, my twins are very healthy and doing extraordinarily well for being born so early.  I know things could be so much worse; I just feel overwhelmed by it sometimes.  I think that is probably pretty common among moms of micro-preeemies or moms of children with special needs.  I don't know how we all don't go crazy all the time dealing with doctor's offices and insurance!

When I got home, I spent over an hour on the phone to schedule appointments with the neurologist and endocrinologist.  It turns out they have no appointments until August and November.  Well, that's just great!  So, we sit around not knowing if something is wrong, not getting the diagnosis we need, just waiting for 6 months to be seen by, get this, not an actual neurologist or endocrinologist, but instead a nurse practitioner.  What a great healthcare system we have!  Can you tell I'm frustrated?


Angie said...

I am so sorry!!! Hang in there, you are doing such a great job with your 3 kiddos. I know its hard, I can relate an I am just beginning this journey. But it is overwhelming, and there is nothing wrong with admitting it. Sometimes that makes me feel a little bit better. We are off to see an ENT tomorrow. Isn't crazy how long it takes to set up appointments?? I just can't believe it sometimes!! Deep breaths and may tomorrow be a better day.

The Kimmels said...

I remember the days of spending literally hours on the phone calling and calling people trying to get our insurance and doctor stuff figured out. I feel your pain and I hope it gets better soon! You have the cutest little kiddos :) Is there any way you can have the pediatrician call and try and get them in sooner??

Jessi said...

It's ridiculous the run-around you are getting! She should be able to be in speech, regardless of a diagnosis from a neuro. CAN'T BELIEVE IT. ugh.

Anonymous said...

Have you tried Red Wagon Therapy? They are far, 2222 and 360/Jester, but they have been amazing fighting with our insurance company. We were always told it was not covered but they have made it work and do almost all the fighting for you...