Thursday, January 8, 2015

Memory Lane...

Here's yet another short post. Just sitting at Haley Jean's bedside & thinking back to our first ER visit at this hospital. We're even in the same room as before.... She had just been discharged from the NICU after 6 months. Not even 24 hrs went by before we were heading back in. She was having trouble acclimating to an environment outside of the hospital:  Respiratory distress. It was pretty scary. Everything I was taught in training in preparation for her discharge seemed to run through my mind like two -way traffic. I'm so thankful for those rigorous weeks of training. It prepared me for such a time as that & I'm grateful for all those who invested the time it took to help me get ready to finish this journey home: )

In the meantime, here's a couple links that should tickle your fancy :)

Haley Jean's Mom....

Greetings!!! Just a quick post tonight as I"m attempting my first try at Pinning my blog to Pintrest. Gonna be exciting!! After two weeks of antibiotic treatments, tacardic & febrile episodes we're still in the PICU. Again, what a way to ring in the New Year :( .....However it's been a productive couple weeks so I can't complain. Had a job interview right smack middle of her extubation....Talk about the case of the nerves..It's very challenging to balance & prioritize, I have no clue how I do it...I just do it...Anyhow, we were very close to a discharge this morning but with the fevers & tachacardic spats we can't risk any setbacks. I guess we'll look at it as a mini vacation....While she's here she can rest up under great observation & wonderful care. My kiddo is a trooper. Under the circumstance she's shown nothing but faith & resilience. It's me who's full of anxiety & a little fear. At any rate I hope to get some rest on this wrestling mat they call a the turmoil my back goes through when slumming in the hospital...It's not comfortable sleeping in a non-reclining recliner, or a 1 inch thin mattress. If you don't expect a week of back pain after that torture you're crazy!!! Sorry for the short post tonight. Not feeling quite myself this evening. The cold really does a number on my bones & since I've been sleeping here every other night I feel like a zombie. An aching zombie....Ugh! Tomorrow a hot bath will help with the swelling in my legs,ankles & feet as well as the throbbing in my side, that'll keep me going a few hours. Besides, watching my little girl grow & heal is what keeps my mind off the pain, it's the best medicine in the world :)

Thursday, January 1, 2015


Hello everyone!! Well today is my 34th Birthday!! Happy Birthday to meeeeeeeeeeee!! Not a lot of people know that my birthday is on Christmas Eve. I kinda like it that way because when they find out people coo & swoon all over me..LOL..Idk, I guess I'm a little shy & plus I don't like attention. But at any rate I guess I should welcome the oooh's & ahhhh's considering how far I've come. Oh before I forget, I share a birthday with my big sis Angela....Yup!! More ooooh's & ahhhh''t worry, we aren't twins, we were born exactly 5 years apart. How cooooooool is that??!!!! For years we've wondered just how did my parents not only have one kid on Christmas Eve, but another one 5 yrs later?? Granted that question is rhetorical (spare me the visual) Besides I'm convinced I came here my Stork!! .....Haha!! So,  This year our sisters planned what was intended to be a surprise party for us at this local pub. The night was full of chicken wing-dings, deli sandwiches, unlimited marguritias, tequilla shots & a DJ that was full of energy :) The evening was topped off with us splitting $50 from 3 random dudes as a birthday gift. Great!! Now Haley Jean can get top-of-the-line diapers: Huggies!!! It was a wonderful night. Since our birthday falls on the Eve of the most holy night of the year, typically we stay in & relax, whether it's with dinner & a movie & preparing for Christmas day we always chill together. Seriously this year I had a hot date with my sofa, robe, remote & a glass of wine.....Don't forget my ZuZu in tow :)

I was about 16 weeks here :)

Randomness with my Capricorn chum :)

Partying like some Rockstars :)

 I named this Evolution because I wanted to talk briefly about how far I've come & where' I've been . AS you know, life for me wasn't easy & I certainly didn't have much optimism from the medical community. It wasn't their fault, I mean it was the mid 80's & not much medical information was available during this time. Hell, they'd lean on my parents for was born all fratured up like a jigsaw puzzle. Came home all wrapped up like a mummy...I had my first rodding surgery at the age of 5-6 ish...Both femurs & tib-fibs were done. Within a year or less my tibias began to curve. My femurs were fine, it wasn't until years later we found out that I was given the wrong type of rods in my lower legs. I had the kind that DID'NT extend as I grew, considering I was at the age where I was still growing. I quickly outgrew them & they curved as I learned to bare weight, with the rod in my left leg eventually migrating 1inch out. I was 13. Wasn't until I was 20 when I found a doctor who was willing to help me. He not only removed the bad rods but he completely straightened them. I believe that was the begining of my transformation into womanhood. When you look good on the outside, you feel good on the inside. Now that doesn't mean I got the surgery specifically  for cosmetic reasons, it was to improve my quality of life. It did just that & more. My phyiscal appearance changed drastically so the boost in self esteem kinda tagged along for good measure. In fact he wasn't gonna do the surgery if that was my main concern. But I didn't know that until after the consultation. That solidified my decision to allow him to do it. Even though I was his first OI case of it's kind, I knew he was placed in our lives for a reason. It was a real gamble & I trusted him with all that I had. For years no one would touch me, no doctor would even try to at least point me in the direction of someone else who could potentially help me. For years I kept hearing "No, sorry I'm not familiar with OI. There's nothing that can be done to fix it" or " I can't help your emotional state, that's not what theses surgeries are for"....PRICKS!!!!!!!!!! 10 minutes into the consultation I already knew he was the 'One'. It was his disposition, his warmth & kindred spirit that convinced me. I knew our search was over & soon we were to see the fruits of our labor. By 'We' I mean my mother. He had us both sold & we grew a friendship that was strong. This is probably why I'm so brazen & bold when it comes to Haley Jean's care. 'No' isn't an option, just doesn't work for us. If there isn't a way it's my duty to find one.

From a girl to a woman :)

So as you can see, Birthdays are very special to me. For a couple reasons: to reflect on what my life was supposed to have been according to science & to see where I am today. Not to forget that I share this day with the most wonderful person one can ever imagine....My Sister. In a house of 7 children; two sharing a Christmas Eve birthday, one with special needs, we never wanted for anything. We were loved equally, unconditionally & that is a blessing in itself. Truly it's by His Grace & Hand that I am where I am today....Together with my family, happy healthy & whole :)