Thursday, January 27, 2011

Loooooooooooooooooooong Week!

I swear this week has been one of the longest weeks of my life. My husband has been in Texas all week, leaving me as a single parent of some rambunctious littles.

Just an fyi, KUDDOS TO ALL MILITARY families, for I could never do what you do. I cannot even begin to imagine your hardships, aches, sadness, when your loved one leaves for duty,deployment,war.

I feel SMOOSHED a bug! Like someone has stepped on me and squeezed the very life out of me. My spirit is sad,I'm tired both mentally and physically, my soul aches to absorb the many joys that God provides to me each day I step out of bed.

I cannot focus, I cannot think, I cannot press on.....or so it seems. I HATE FEELING THIS WAY!

I have fear, regret, exhaustion, sadness written all over my body today. No, these aren't visible to others, just me.....and God. He knows.

I took Faith to YET another doctor again yesterday, a Neuro-otologist who deals with issues of the ears associated with neurological issues. We sat in his office for 2 1/2 hours and saw him for 15 minutes. That alone can make you wanna kick your granny!

We got the pleasure of seeing the doctor's nurse practitioner first. She was a middle aged, attractive woman, gray hair, cute red sweater. And then, she crept over to the dark side.

Faith's medical history is complex. Every time we see a new physician, nurse, whatever, we must start from point A..............................and then go on, through her entire history with someone new. I thought about making a sign that states everything on it, making it easier on both them and myself.

She is adopted from Vietnam. Yep, this picture pretty much sums it up!

She sees lots of doctors.

She takes daily medications....yes, I will list them, AGAIN!

She cannot really, She is DEEEF!

She needs to eat often due to her hypoglycemia.
Oh, and please NO SUGAR!

She must get frequent blood transfusions.

Ohhhhhhhhhhhh and the list goes on, and on, and onnnnnnnnnnnnnnnnnn.

She has a CRAZY Momma, who is her #1 advocate, BIG mouth, Referee, and many other titles!

So, cute sweatered, gray haired, family practitioner lady asked me many questions, and I DID attempt to answer, yet she spoke over me every time I tried to reply. Once is understandable (maybe) twice, I may still forgive you, but 8, 10, 12 times you cut me off!! UGH!

Why ask me questions if you don't want to HEAR the answer?? What's the point? Do you truly care about every single, medical exam, appointment, diagnosis, referral, procedure that my daughter has had?


So,Dr. "stay in my office forever because your time is not as valuable as mine" comes in.

He suggests that Faith needs ear surgery to see and possibly remove some excess fluid in her eardrums. He is not sure because her ears have significant scarring from past infections that were left untreated in Vietnam, plus from her past ear surgeries. So, he would like to try to remove any fluid (if it's there) and put a T-Tube in both ears.

Now, the last doctor we spoke to in the same office said this, " Your daughter has a middle ear bone deformity and ear tubes will not benefit her. I recommend hearing aids to assist her in hearing."

Uhhhhhhhhhhhhhhhhhhhhhhhhh, ok?!?!?!?!

He says he will try this, then see her back in a month to see if her hearing has improved at all.

Not let me remind you that I, we have been battling this whole "CAN'T HEAR" thing for 4 solid years, and she still can't stinkin hear!

He said if so, great we will check her ears every 6 months.

If not, we will then proceed to send you to another doctor, HAPPY HAPPY JOY JOY, who will do an MRI and CT Scan of Faith's head to see if she possibly had a stroke that we are unaware of when she was little, and still in Vietnam, before we had adopted her.

Ok Bob, I'll take door #3, what's door #3 have to offer?

So, today I sit here, again pondering my daughter's future. Her surgery is scheduled for Feb 23rd.

Genetics testing will not be back for 2-6 weeks still.

Auditory Processing Disorder Therapy is on hold until we figure out what to do about Faith's hearing issues.

The hematologist has had to up Faith's medication dosage. Her transfusions have been every other week for awhile now, which has increased the iron levels in her body. If this isn't followed closely, excess iron could cause organ damage/failure.

So, now they would like to occasionally do a 3 week transfusion transfusion to keep some iron away. This will make Faith feel like crap,irritable, sluggish, achy, emotional, but it's what we must do to literally, save her life!

We have an IEP meeting after school tomorrow, the teacher and I. The school that we are working with treats me as if I don't matter. Their time is definitely more important than mine they assume. And I go alone, without my husband because he is in Texas and I'm here....making decisions with doctors and professionals when I can't even think straight enough to remember if I brushed my teeth with my tooth brush or someone else's today.

I do not ask for help, pity, none of that, because I know this is God's plan for us to be the best family possible for our daughter, that He gave to us.

I will never forget the first time I saw her sweet face and was captured by the story her lil brown eyes told.

Yes, it was that moment that "She had me at hello!"

I just need prayer today please for these specific things if you have 2 extra spare moments to go to the throne on my, our behalf.

1. Please pray that I would mentally and emotionally GET IT TOGETHER! I need to be on my toes for the upcoming meetings, appointments, and surgery Faith will be having.

2. Please pray that some doctor or professional would help me, us develop a plan of action for my daughter so that she may thrive in school and have high self-esteem.

3. Please pray that I may get through today and do not collapse until I arrive in the cozy place that I call home.

4. Please pray that I allow God to show me the joys and triumphs that he has already brought us through.

5. Please pray that I realize and know, deep within my heart, that so many people, children have harder, tougher, day to day struggles and that I need to "SUCK IT UP" so to say.

Oh, one last thing, Please pray that when I make and eat an entire batch of double fudge brownies tonight, that I don't throw up. I've never been a pretty "throw-er-uper" and I would like to keep that issue on the down low.

Thanks for lovin me,