Monday, June 11, 2012

The Beginning....

Posted by Alisha T at 3:06 PM
Hello Everyone!!


My name is Alisha Endrea. My fiance Damani and I were blessed with our babygirl Sianna Alani on December 7th, 2011. For some of my family and friends, this may be your first time reading about Sianna's diagnosis and honestly, it's so much easier for me to share this way. At least for now.


Here is our story:


My pregnancy wasn't too hard, I gained relatively no weight until the last two months and all my diagnostic testing and ultrasounds came back 'normal' every time. But by month 9, week 1 I was BEYOND ready to have my little princess OUT of my body. :) She was a tad bit late and didn't want to come out even when I was sent into the hospital to induce my labor. Labor was intense, painful and scary - I can't lie - but Sianna was finally delivered by cesarean at 11:19 PM (coincidentally, 11/19 is the date of both her father and his mother's birthdays).  She was BEAUTIFUL. Bright eyed, strong lungs, clear skin; beautiful. I saw absolute perfection when I looked at my princess.


I was wheeled out of the operating room with my baby in my arms and our new little family slept the night away - exhausted and happy.


The next morning, to my surprise,  a doctor who we had never met before came into my room asking "Mom, have you noticed anything STRANGE about your baby?" What the heck could she possibly mean? Was this a routine question? I mean, do they ask all new moms this question after they get to spend a full night with their new bundle? 


I was confused and immediately alarmed. Something in the pit of my stomach told me this was NOT protocol. I, of course, answered simply: No. Damani, had been asleep in the chair/bed next to me but began to wake up when the doctor asked if I noticed anything wrong. I think his gut began to feel the way mine did.


The cold doctor (I will give her the benefit of the doubt and assume that she is obligated be this way in her line of work) proceeded to sigh (as if it was shameful that I hadn't noticed) and reply:


"Well Sianna's bone structure and measurements are characteristics of Achondroplasia..." (Achondro -what?)
"...a form of dwarfism." (Wait - dwarfs? Like little people? Like the little couple? please, go back to Achondro - whatever you said)
"Most likely Sianna will never grow beyond 4 feet tall...." (Hold on, her dad and I are short, so what. But what is this Achondro thing? MY Sianna? Is this woman lost? At this point, I had my fingers ready to hit the Emergency nurse button, this woman was clearly nuts. ALL my ultrasounds were "normal", remember?)

"We will need to do some X-rays and genetics will be in to do some blood work later on." 


And with that... she was gone.


I try not to exaggerate (a lot); at least not in this instance: Immediately, I mean as quickly as she had come in, she left. This small framedm harmless looking woman, had single handedly delivered the most devastating blow I had ever received and get this:
it was a HIT and RUN. 
cruel.


I immediately picked up my phone (thank God for phones that are smarter than people) and googled "dwarfism Achon".... and began educating myself and Damani as well as examining our little bundle of joy for 'evidence'.


Anyway, to fast forward through weeks of  diagnosis, doctors, crying, TONS of denial, anger, embarrassment and the such, Sianna is now 6 months. Our baby girl is beautiful - and not just in a proud mom and dad kind of way- but truly beautiful in spirit and pretty cute to boot :)


I must admit, I am still learning to accept her condition as a permanent truth. This IS a part of who she is and she, nor we can change it. I love my baby girl very much and I am learning everyday to understand Achon and what it will mean to her life as well as ours. I'm hoping that by blogging and connecting with LPA (Little People of America) I can gain some perspective on what this means for us.



What I DO know and what I want our friends and loved ones to understand is that Achondroplasia in no way affects Sianna mentally or intellectually, or her ability to live a full, beautiful, healthy life. She just might develop a little slower physically: learn to hold her head up, crawl, or walk a little later than most.  And of course she will be of small stature - although a few of you who already knew about her Achon have joked about how you didn't expect two shorties to make a very tall baby anyway ;-)~ To all of you who HAVE met Sianna, you know how sweet, happy, and charismatic of a baby she is and I'm glad she has so many people around her who truly care for her and will love her regardless.




Damani and I appreciate you.


I can't type anymore, fingers hurt, so I'll just post some pics of her for now :)




Sianna being silly @ 5 months old:
In her "church lady" hat

Smiling in her sunshades, so cool.





Watching "Your Baby Can Read" in her Bumbo Seat. She LOVES those dvds!



Finally here she is today, watching mommy type and playing with Pinkie, her toy bear. She is 6 months old.




XOXO from Sianna & Alisha

9 comments:

AutumnPoet said...

Absolutely beautiful! I can't stop the tears from falling out of my eyes. I love you all so much. Sianna couldn't have had a better set of parents to come through. She is an exceptional child and I believe she has come to teach us and make all who encounter her better individuals. So I cry because I'm touched and feel honored to be one of the people who will learn from her. There is no pity in these tears only gratefulness and humility. Thanks for sharing this journey. I will continue to follow.

Sincerely,
Tina Gebrelibanos

Lyla Our Little Miracle said...

Hello Alisha!!!! Such a beautiful blog and an absolutely beautiful daughter!!! She is perfect!!! My daughter Lyla is 20 months old and is also Achon. She is the love of my life!!!!! Welcome to the blogging world! I look forward to seeing and reading about your family adventures! You can visit my blog at.... Lylaourlittlemiracle.blogspot.com
I will add you to my blog list. Feel free to do the same for my blog. If you ever need anything or want to talk by phone you can always contact via email. I am here for support !!!

Leslie(long island, NY

Lyla Our Little Miracle said...

Hey Alisha! Just saw your comment and I just wanted to tell you that lyla loves the pool. She is a September baby so the summer after she was born was when I would take her in the pool with me. I always held her because the floatation devices that I found were not good for Achon babies and didn't give Lyla the support she needed. So I would just hold her. Now that she sits up on her own and walks by herself I put her in floatation devices that she can sit in. She loves being in the pool!

I also wanted to comment about the Bumbo chair. I know some members of the yahoo group already addressed that with you but I also wanted to tell you that Achon children should sit at a 45 degree angle until theysit on their own. ( which could take a while). They should either be lying down flat or sitting at a 45 degree angle. Never 90 degrees.
Who are Sianna's doctors. I know you live in Maryland. You should go to John Hopkins. They have one of the best skeletal dysphasia facilities and their orthopedic surgeon is a Little Person". His name is Dr. ain. This is the place you need to go to get the best care for Sianna's. The people here are experts on her condition! You will be so glad you did!
Remember I am always available to assist you anytime!

Unknown said...

Great blog. I am so proud of you and love you both (though I have yet to meet the little one!) I am excited to see how God will reveal Himself to you, in a more intimate way. And by the sounds of this blog i'm certain He's already begun...

Remember is purpose and plan are ALWAYS good.

Love you cousin.

Noelle Reese said...

She is really beautiful! Our story is much of the same. Carlee is 4, 5 in October. You can see her here: http://noellescrapsalot.blogspot.com/
Our team of Dr's told me to take back the bumbo sp? chair they didn't want Carlee sitting in that or the Johnny Jumper or the exersaucer . Once she was able to sit up unassisted she was not getting in anything where she would be contained LOL
Buckle up for the best time of your life! Alcon babies are so yummy. Carlee says Mom, make 2 pony tails today so you can admire my arms! LOL I have kissed her darling arms millions of times over the years I love them bare and her long pretty hair up so it isn't in the way :) If you ever need anything feel free to email me directly. noellereese@q.com

Alisha T said...

Hi Leslie!!

I am excited about her and swimming. I know that with Achon babies the balance of weight is off so I doubt if she could sit in one of those baby floats once she is sitting unassisted- am I wrong?

Our appointment with Johns Hopkins is on July.9th. I am oober excited because I don't care for Children's National. Where she is having her sleep study done. We will be seeing Dr. Hoover-Fong in genetics first; although Sianna was already diagnosed at CNH. She has not been to ENT or had and MRI so they want to start from the top and double check CNH'S work...

I will absolutely update about our visit there :-)

Alisha T said...

Tina & Tif -

I love you both and thanks for reading. I know God always has a purpose, even when we don't understand that purpose. I am grateful that He thought highly enough of me to trust me with her. :-) She's pretty awesome.

Alisha T said...

Hi Noelle!!!

Welcome to our world!!! I have to agree I can't stop kissing Sianna's arms and legs; they look so juicy and cute! And I LOVE when she first wakes up and stretches her little arms up over her head.
Yum!!!

I will pop over and see Carlee ASAP!!

Sarah Condon said...

I just came across your blog. My story is a little different as we didn't find out that Madison had achon until she we 12 months. Therefore, we did all the things they say not to do because we had NO idea. Madison is now 2 and doing so well. They are so awesome and you are so right when you said that God must have thought highly enough of you to trust her with you!! They are very special children who light up our lives!! Your daughter is absolutly adorable. If you have any questions please dont hestitate to contact me. You can check us out on my blog thecondonstory.blogspot.com Maybe we will meet up at an LPA event one day.

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