Tuesday, April 13, 2010

What a Day.

Have I mentioned that I have a full time job? The hardest full time job EVER! Have I mentioned that I never, ever, ever had the desire to be a stay-at-home mom? Days like today remind me why...

Days like today also remind me how blessed and lucky we are. I have a nice car to drive all over the metroplex to appointments. We have insurance and are able to receive the best care at one of the best places. I have the best nurse! EVER!!! She helps me keep my sanity. She makes long days like this bearable. She deserves to win some sort of award for being the most amazing "special needs baby whisperer!" I have great support from my family. My dad makes sure Kamden gets home from school safely when we're stuck on the other side of town at appointments. I have great friends to listen to me vent and cry and bitch and moan through my tough days. Trust me, I know things could really be so much worse...
But today was just one of those days. The ones where you really want to retire.
My head hurts.
I have a toothache.
My blood sugar is apparently low.
And I'm exhausted with the politics involved in EVERYTHING Kendall related :)
Anyway, besides being emotionally and physically drained, here's the latest.
Kendall and Kamden's eye appointments went really well. Kamden's fine. No glasses needed. Kendall is tracking and completely impressed the office at the PO. We are scheduling the Examination Under Anesthesia in the next few weeks. We will be measuring her eyes and assessing the pros and cons of possibly inserting in ocular lens implants. She will have her pressures taken more accurately, and will definitely leave with a more accurate prescription.
Our Pediatric Ophthalmologist is willing to work with Neurology. Our neurologist thought long and hard today (literally, shut his eyes and I think mentally went through her entire chart in his head for about 5 minutes) before telling me he thought we should move forward with the Muscle Biopsy to check for Mitochondrial Disease. We have been very apprehensive about this. It's mainly me. I need to hang on the the hope that Kendall doesn't have anything progressive...but it would probably be a good idea, since she's going to be out, to go ahead and go through with it.
Neurology brought a few surprises. It is time for Kendall to attend the "Spacticity Clinic" at Cook Childrens. This is a collaborative approach to treatment of movement disorders. Our beloved old Neurologist (who we saw before the seizures) will assess her May 5. We love him and are very anxious to hear his thoughts now that Kendall actually has some tone :)
I voiced concern about her arching. He insisted we visit with a GI Dr. soon to check for reflux. I thought this was coming for some time now, so it has. On her birthday we will go to the Dr. In the event he thinks she needs a fundo (which I truly do not think is necessary...nor do I think I would go for it) we will tag that on to our Muscle Biopsy, EUA date.
Our Neuro ordered another EEG before our next appointment. We will talk about plans to wean from the diet in 4 months. (obviously, she can't be on it forever, and we knew that) It will be a very slow wean probably going from a 3.5:1 ratio down to a 2.5 or so. The idea being eventually she will be off the diet and the seizures will be gone forever.
He wouldn't even entertain the idea of dropping Keppra. Maybe I can work on him again next time, but seeing as she hasn't had seizures in a while, I guess we shouldn't change anything.
No need for another MRI. What's done is done.
Then we went and had a ridiculous amount of blood drawn.
With time to kill, we went to the Botanic Gardens, then headed to the Urologist. Apparently I had that time wrong, and just when I thought we were going to be sent away, they called us back. We waited for the Dr. to come in and tell us the Renal Ultrasound was completely normal. I just stared at him and our nurse had to explain I wasn't used to normal results :) So no kidney stones, just encouraged us to continue giving her proper fluids and when she retains her urine to check constipation and increase her daily dose of Miralax. Simple enough. Structurally her kidneys and bladder are fine. No surprises.
So, overall good news today. My stress comes from my over-analyzing, worrying self. And being in the car all day. And dealing with people who view my very special daughter in dollar signs (but I can't really go into that on my blog today.) I'm sure once I get some sleep tonight, I'll have a new attitude tomorrow. I refuse to lose faith that there is more "good" in people than bad. That people only stare at my daughter because she is so stinkin beautiful. And the majority of people who deal with Special Needs children do so because they really do genuinely care about their well being...


Mo said...

Sending a hug...and yes, she is SO STINKIN' BEAUTIFUL.

Anonymous said...

Yes, she is just that beautiful! And lucky to have such a devoted Mommy! Can't wait to see you Thursday for some tasty treats! Love, Ann

Candace said...

Those kind of days are a real overload. What a ton of info! I sure hope that it all works out and that she doesn't have to go thru all those things. Poor girl but she is so sweet and tough!

Jessica said...

I'm sorry you had such a stressful day. She is more than stinkin beautiful, Mom. Her grin and her cheeks and her lips make me happy from the inside out!!! Wish I was there to give her some kisses and listen to you bitch and moan and complain!! Love you guys!!

Cristina said...

I normally don't intrude, but we had one of those days today too. Thanks for reminding me that "the majority of people who deal with Special Needs children do so because they really do genuinely care about their well being..." Maybe I should have our neurologist read that sentence too! :)

And, for the record, as you already know, Kendall is darn beautiful!

(9 times out of 10, when people ask me what's "wrong" with my son, I give a dramatic pause and reply, "he's too ridiculously good looking!")

Gilda said...

Kendall is an angel....She is just Beautiful. When I look at your pictures you post of her she always makes me smile. I know you go through alot with her everyday from what you inform us. But I don't see Kendall in any other form other then just perfect.

Kristine said...

Sorry you had such a brutal day...I think you just have to try and ride it out. Kendall is looking so pretty these days, LOVE the latest photos. :) Hope today was much better!

TMI Tara said...

Sorry to hear about your mom. Sending prayers that her health improves soon. Your children are so beautiful and special and I'm glad you gain comfort and joy from them! I just love that sweet Kendall. Her smile truly makes my day, so I can only imagine what she does to you!