Just Making Pancakes

Just Making Pancakes

Thursday, January 7, 2016

The Happenings at the NIH...

Finally I have gotten an opportunity to write a longer explanation of what is going on and what has been learned while here at The National Institutes of Health UDP program.

First things first they think they know what is happening to Kamiyah. They are currently running tests to confirm it and one of them is being sent to New England to compare genetic markers that would have caused this. They believe it is Narcolepsy Cataplexy.  If this is the case there is no cure, no treatment, it will not progress but it will never get better or go away. If this is in fact what it is we will just have to learn how to adapt. Kamiyah will never be able to drive or live entirely independently because an accident will kill her before the actual disease.

That is a hard pill to swallow.

Physiatry

This department discovered that Kamiyah is double jointed in ALL of her joints and that is why she is so clumsy and has a hard time stopping once she gets going. It explains the falling (not spell related) and why it is strange to us that she may fall and trip even when she is not "gone".

They have also figured out why she walks on the front of her feet. Her feet are so flat and her joints do not lock so it is her attempt at controlling the pain and to control her motion. We will be getting the very very expensive shoes and supports when we get back to Sioux Falls.

Developmentally they suggest demanding a Peabody developmental test to be done outside of the school district because she is behind and clearly the school is trying to skirt having to pay for an aide. If she does not get an aide she should not be in a public school or riding on public transportation because she cannot stop this from happening and the noise and hustle and bustle of alot of people will cripple her. The NIH is connecting us with the right team to come along side of us so when we get back home we are all on the same page and Kamiyah can lead the most normal life possible.

Physiatry also wants me to get a special type of swimsuit so she can still do something she loves but would reduce the risk of drowning if she were to have an episode in the water. Swimming has always been very very dangerous but Kamiyah absolutely loves it so I will order that as well.

As far as a helmet to be able to participate in activities they believe it will do nothing but cause more attacks because of the nature of what is wrong with her. They are hell bent on her just having a one on one person.

Sleep Lab

The sleep lab has recorded almost every type of attack and that is currently being gone over by a specialist. No results have been released as of yet.


Heart

This is absolutley normal and for this I am thankful.

Other findings

It has come to the attention of the doctor and us that Kamiyah's SAT's drop when she has these attacks. Her heart rate decreases and her oxygen level drops and then spikes back up when she comes out.

Weird.

Sedation

They are taking pieces of skin, doing a full body MRI/X-ray, getting a lumbar sample, doing an ABR for hearing, as well as checking her vision because the doctor thinks her vision has declined yet again.



That is all I have for now.... I have posted a picture of this weeks schedule, the team of people working for Kamiyah, a pic of her being a tiger even though she was exhausted, as well as the swimsuit they are saying she should have. Be sure to be following on facebook for short blipits of our journey and what we are dealing with in real time.

Much Love,

Breteni












3 comments:

Anonymous said...

Wow! This is overwhelming just to read I can't imagine how you are dealing with it in real life. Then again...yes I can because I have learned over the last 7 years how amazing and strong you are! Breteni, my prayers and thoughts are with you and that precious baby girl of yours.

JBergan said...

Wow!
I know what a relief it is to know what you are up against, but how much it can take out of you by knowing.
Take the time that you need to absorb all of this. It will change your normal, but the two of you have a huge circle of warriors around you. Lean on all of us for those times when it is all too much to carry alone.
The two mommas with you love the two of you and would do anything, so don't be afraid to ask.
Prayers and hugs to all of you.

JBergan said...

Wow!
I know what a relief it is to know what you are up against, but how much it can take out of you by knowing.
Take the time that you need to absorb all of this. It will change your normal, but the two of you have a huge circle of warriors around you. Lean on all of us for those times when it is all too much to carry alone.
The two mommas with you love the two of you and would do anything, so don't be afraid to ask.
Prayers and hugs to all of you.