Monday, September 29, 2014

welcome to Moe's...

Back in May, I participated in a research group with several ladies. We talked about life, stresses, finances etc. I was hugely pregnant and had a crappy day (back windshield busted 2 hrs before this meeting). Anyway, as I was leaving, the ladies who sat next to me were outside talking and I said something to them (not even sure what now). One of the ladies, said "Hey...I'm the Catering Director at Moe's and I may need some will be a perfect job for a stay-at-home-mom" and she handed me her card. AWESOME, I thought! I e-mailed her that week and we kept in touch---but no job offer/interview etc.

Life got busy, especially having one son break an arm, and another who decided to spend his first two weeks in the hospital and then see every Doctor known to man. 

Fast forward to late July, early August. I was really looking for something to do to help supplement B's income. I hated that he had to practically kill himself with extra OT but we have medical bills out the wazoo and lets face it, money is tight. I prayed for the right answer to our situation. Should I go back full time and put the kids in a school? Do I just continue staying home and sell a kidney? (ha!) Or should I start selling something like Amway?

Literally, the next day I found that Moe's business card. I decided what the heck and shot her an e-mail. She was actually so happy to hear from me that she called me the next week and set up an "interview"!

A week later, I met up with her, talked for an hour, ate yummy food and got a job! I couldn't have planned a more perfect job for this chapter in our lives. I stay at home (answer calls/input orders)with  my children, work part time, earn an income and get free food. I mean seriously?? It's almost too good to be true.

It's definitely not something I would have ever considered but it's been wonderful. I credit the Lord Almighty for this gig. Truly. It was a chance meeting my now boss (she wasn't even orginally supposed to be at the study and I was almost not able to make it) and if I hadn't took the chance to send her that e-mail, then who knows where I'd be right now.

And probably with one less kidney..

Tuesday, September 2, 2014

Hammer Time: 2 months with Updates

Hank turned 2 months a few weeks ago (again, sorry bud!). I simply cannot believe how fast it's going. I'll blink and he'll be the wild 2.5 year old that is driving me to drink...(not that any of my children would do this...nope!)

We had follow up appointments with both the Geneticist and Neurologist. Every week in August, we saw a Doctor. Fun times.

First up was his wonderful Geneticist. I was so hopeful that the results from the test sent to Baylor would have showed something. I, obviously, didn't want Hank to have anything but at least if we KNEW what caused the severe acidiosis , we could fix it.

Alas, the results were "normal".  Dr. Bircher, the people at Baylor and Dr. B's colleagues were all shocked that it wasn't a true "Inborn Error of Metabolism".  He presented every single symptom of an IEM, so we are confused. She did a complete genetic q/a on me and B and a physical exam of Hank. (Quite a process)

Dr. B said it could be the result of several things.
1. He could have a lower amount of a certain protein but not low enough (0) to register on blood/gas/urine tests. Stress (being born is stressful) then creates havoc and causes his body to go into the acidosis.

2. Some medicine (epidural etc) could have passed thru the placenta and as a result caused his body to react adversely. (Unlikely but still possible)

3. Unknown. But...most likely NOT genetic.

She specializes in rare cases and has never seen a child like Hank.

I actually broke down in tears when she greeted us (Hank mostly) and said "I'm so glad to see you....I honestly didn't think I would." Yep....she is shocked that Hank is still alive b/c most babies with his level of severe acidosis do not survive. I knew he was critical (especially those first 48 hrs), but I believe God put a sense of calm on me that only He could. Hank is a miracle. Thanks be to God.

We will take precautions when/if H gets sick (go immediately to ER or Dr etc). We will also get random CMP (complete metabolic panels) drawn to make sure he's still good.

We will continue to see Dr. B every 3 months.

Next up was the  Neurologist, Dr. Velero. When babies are in a severe acidosis state, they often times go into seizures. Thankfully H's 24 hour monitor did not show any signs of this. However, Dr. V wanted to continue monitoring him since we don't have a diagnosis. He's wonderful and very thorough.  He did a few tests and we were on our way.
Big brother is so good...

waiting on Dr. V!

Both Dr's agreed that Hank also has "hypotonia" or low tone in his upper half. I have notice that he never lifts his head up while having tummy time and keeps his fist balled a lot. These are signs. We are in the process of getting PT to help get him back on track. Dr. B mentioned that he is at risk for a slight developmental delay due to the time in the NICU. Great!

apparently tummy time is exhausting

Final stop was his Pediatrician. He looked great and we had no concerns. He's ON the charts and in the 4th percentile for weight! She was so excited. A child of mine, on the charts...whoohoo!

Weight: 9 pounds 4.8 oz.  (4%)

Height: 21+ inches (I forget...sorry)

He loves to kick, smile, lay on momma, have his brother talk to him, and talk!

He hates bath time, tummy time, being in the car seat and not moving.