Lately..

So it's crazy to think in eleven days my little miracle will be one. I've been struggling lately and trying to mask it as best as possible. I've got a new career, Emmry's doing fairly well over all besides not eating solids still, and some insurance issues- but granted she's here I'd say she's doing great. I try and look at things from the view that our glass is half full, not empty. Mike's been traveling working and I'm home with the kids, which is perfectly fine for me until I get going fully with my career.

I've been extremely emotional every time I hear another little baby has passed with Turner's, I'm BLESSED beyond words to be able to hold my daughter in my arms and I feel horrible for the other moms. It's hard to explain. I feel terrible and sometimes I don't feel like posting much about TS or Emmry because those mommies that lost their TS baby are hurting and I don't want to feel like "bragging" Emmry up. I've had some jealousy issues lately, and I can't help it. I've cried a lot when my husband's home explaining to him that yes, she's normal but she's not. He gets me..like no one else can.

I know I'm lucky that she's here..in fact I'm VERY lucky. She's my precious baby and nothing would ever change that. But at the same time I'm scared, confused and angry. I'm scared because deep down I know the risks, I know the the talks I'll have with her explaining she's not 100% normal, and she's special. I'm confused because sometimes I wish it were easier, I wish I had a little girl I could dress up with frilly shoes that fit, and clothes that were easier to find- I wish sometimes she were not as moody and didn't constantly have feeding issues, diarrhea, and sleeping problems. I wish I could snap my fingers and miraculously have an answer as to why I was chosen and fix everything, but I know that's not possible. I'm angry because I'll have to tell her at an early age she won't have boobies like others or babies, and yes, she looks different. I'm angry because some people that have perfectly normal babies don't give them the love and care necessary, I'm angry because sometimes I feel jealous of others "normal" babies, I'm angry because sometimes I feel like I can't have a normal adult conversation without mentioning this subject and having others tell us we shouldn't have any more children because she's just too much. I'm angry because I'm complaining, yet am so blessed. I'm angry because all of our lives it's going to be a struggle to embrace.

I feel somehow things will come into place and my feelings will subside, but I also feel like I shouldn't be expected to bottle it all up and pretend I don't have these feelings, because I do. But everything happens for a reason and time heals all. I am lucky, I am blessed. I have a beautiful daughter and she means more to me than I could ever explain. I can not believe she is going to be one!!! I'm still in shock! She's so close to walking, she says da da, hi, kisses, and did I mention she is so ornery? She's definitely a blessing in disguise, and I'm excited to watch her grow!

On a Positive note - Check out these  recent pictures by Tracy Lovett!  Amazing work! Tracy Lovett

New Adventures

Where do I start exactly? So much has happened in the last few months I'm unsure as to where to begin. Moving back to Missouri was for the support of others during our trying times with Emmry- my baby girl. Mike and I both feel good to be home, yet it doesn't feel right to us. And so..he's traveling again. He just got back from 6 weeks in South Carolina while he was there I pursued my education for my Real Estate License. It was a new and exciting adventure that's for sure! We had help from my parents, brother and sisters too! Emmy stayed with me in the hotel at first and when I went to class Destiny watched her from 8am-5pm, Crystal had Chase at our family business from 8am-4pm and then took him home with her also, when she needed a break my parents took over and Chase hung out with Michael a few times. The next week that I needed to be in class everyone switched roles and Mom came with me and Destiny took Chase. It's always neat how family helps you through it all! While Mike was in SC we had 4th of July, our 1st Anniversary, Quad's (Michael IV) 1st birthday (my nephew- Michael's son) and my first non pregnant birthday since 21 lol. It really stunk that he was missing all that stuff, but my biggest fear was that he was going to miss Emmry taking her first steps! He didn't Thank God, she's so close but her swelling on her ankle is just holding her back- she's super close so I have faith she'll be walking in no time. Quad and her have a competition going on.  Having my husband gone actually helped me [don't get any ideas Mr ;)] it hurt a lot when I didn't have my best friend beside me constantly, however it was a good experience for me to break out of my co dependancy-  Chase and Emmry missed him terribly which is why we decided when we moved home he was done traveling, however you do what you have to do to pay the bills whether that be working long hours and being away for long periods of time or not. I'd rather have my children fed and clothed and not have to depend on someone else when were capable adults that made the descision to start a family. People grow up and you do what's necessary, not what you perfer. Anyway the six weeks was almost over- Mike was working night shifts so we rarely talked even on the phone- how we did it took a little more independance, loyalty, trust and love- but we made it. Every time some one was at the door Chase ran to it and said my daddy! When it wasn't his daddy he was really disappointed, than Thursday 8/2 someone knocked at the door and Chase answered- no one was there. Chase looked to the side and it was his daddy!! He was in so much shock I don't think he believed it was his dad lol. He had a bag in his hand with my anniversary/bday gift. Chase helped me open it! It was a laptop!!! :) He seriously treats me like a queen and spoils me- we're not perfect, but no one is. I was so excited to hug and kiss him and I was smiling so much my cheeks hurt. Emmry went right to him and said dadda, he missed us so much and we missed him even more. But we did what we had to do to feed and cloth our family. He told me the news that he'd be home just until Sunday than was getting transfered to Nebraska. Only 3 hrs from here, so not as bad. :) We'll be joining him back and forth too, since the kids and I have missed his presence. Emmry will be one year old next month I'm soooooooo ecstatic about her party, I'm going all out for my miracle baby and also because Chase's birthday is in Jan. so he needs a little fun too :) Don't judge :D  Right after Emmry's party the following week we'll be going to NC for her one year assessment. We've got lots of plans for our future so I'll be sure to let you in along the journey.

TO DO OR NOT TO?

So..I've been literally a mess! Moving home I thought it'd be constantly like a little kid in a candy store, everything is perfect when you first walk in and see the pretty colors of the candy, than you eat all the candy and your tummy hurts because you've realized you've had too much? Know the feeling? I do. Anyway- since moving home, I don't even want to hang out with anybody I'm back to my hermit crab self, cleaning, appointments and tending to my kids, and I ABSOLUTELY love it, it's just my thing I guess. The only bad part about this all is I've got too many decisions that are consuming me and eating me from the inside out, if I could just sit and cry all day I would. But I can't I've got to put a smile on and pretend everything is fine and dandy for my children.

I never thought being a parent I'd have to make all these decisions that are so important, yes being a parent is extremely hard, but so so so rewarding and that's what has been getting me by. If you don't know we just got back from NC a few weeks ago. Emmry did outstanding developmentally. However, she is now measuring in the 10% and last visit she was in the the 50th. She's now loosing weight and is not getting taller at all. Dr. Davenport (NC DOC) recommended waiting on GH until she is a year old still, and her 3 month old visit to NC, she recommended seeing how she'd chart and we might not even need Growth hormones because our heights. It seems as things have changed dramatically for this family. In the last month Emmry now has glasses, is having tubes put in within the next month. She is now recommended to see an optomertrist because her swelling out of 56 of the TS girls is the most oddly shaped and swollen.

The Dr's nurse at Children's in Omaha called us while we were in NC with the results of Emmry's bone age scan and said her bones are advancing too rapidly and there's not a change in her height. She stated that and she told us it'd take a few months to get set up on Gh so the companies would be in touch with us. Thats all fine and dandy because Mike and I have time to research the risks and benefits, however that's not the case now. Somehow in two weeks, growth hormones have been sent to my house and it's immediate that Emmry starts NOW. Why? I'm not exactly sure, they say because her bones can burst out of her body, because they are advancing while her body is halted. Okay I get it, but I don't.

I feel like they're rushing- first it was 1 yr, than July, now it's NOW! The growth hormones, needles, swabs everything is at my door except a doctor explaining exactly every reason to me as to why its necessary to start now. Side effects of GH are pretty serious and being as they don't recommend them in babies I just don't get why they feel the need to push it. If she's having a side effect how am I to know? The symptoms vary so greatly.

The nurse will be here to train me tomorrow and I am expected to give my daughter a shot everyday until she's 16-21 years of age. No big deal, right? What would you do if first you give birth to a daughter see her for five minutes..she's life flighted and than your told your daughter has down syndrome, then they're not sure, and than you find out it's her heart, it's not down syndrome instead it's TS, she doesn't eat but instead it's necessary that she has surgery at one week old, she than is force fed- your 2yr old wonders where the baby that once was in mommy's tummy went and he's not allowed to see her, you too are hospitalized, paralyzed and wondering who is caring for your children and if your daughter is going to pull through. She's not hearing right, she's not thriving and she's being cared for by volunteer nurses. My daughter sees more doctors a month than I've seen my entire life. This has all been a night mare and a blessing in disguise and I'm scared to death to make the wrong decision for my baby.

I cry every time I think about sticking that needle into her- the ingredients, the side effects. the pre existing issues, the unknown. Worst of all I'm her protector, her care giver and I'm expected to give her this because they say it's going to be effective. She's so young though and typically they do not recommend this until older.

Yeah, I can say no. But I'm scared of the consequences either way honestly.  Mike and I both believe that she was given to us for a reason, she was born with Turner Syndrome for a reason- sure she has special needs, but I don't think that giving her growth hormones just to make her a little taller and risk the chances of her body having an adverse reaction because of her many other issues, such has her kidneys. heart and sensitivity to medicine is worth that. In my eyes she's not broken so why do I need to try and fix her? She's perfect in my eyes.

I just wonder what she's thinking and wonder if I'm doing the right things for her. Her medical binder is stacking up slowly and is as big as her, I wish I could somehow switch places with her for a day just so I'd know how she feels, what I can do to improve and go from there.

Her being born has taught me so much. I value life now more than I ever have, I go to bed with a heavy heart each night thinking of the day and wondering if she was hurting today somehow. I wake up every morning with a smile seeing her smiling back at me and knowing that she's my miracle. I guess what I'm saying is being a parent is hard, you think twice- once for yourself and once for your child, but having my Emmy girl I think over and over daily and over analyze every thing that a normal parent wouldn't even second guess. I'm scared for my baby, and I'm hoping for the best outcome, I'm hoping some sign comes my way to tell me what is the RIGHT and SAFE thing to do is. Of course everyone is going say do what the doctor says, but I'm the one who has to make that choice and I'm the one who has to live with the choice I make for her. Sometimes I wish that I could just treat her normal and pretend that everything with her health is normal so than she can grow up doing as she pleases. But if I treated her like every thing was normal, she wouldn't get the proper medical care that is needed to ENSURE her health is maintained so she can live the most normal to her ability life growing up.

I know tomorrow whatever choice I make that I'll be making it in the best possible interest of her in all views of the spectrum. I just wish these choices were easier for all of us. I know nothing comes easy, what doesn't kill you makes you stronger, and that's what is keeping me going. I'm so sorry baby girl.

Struggles.

Today was a few more appointments for Emmry. Here's the quick summary and a cute poem another TS mommy recommended.  Had some more of Emmry's appointments today. She is supposed to start wearing glasses asap and follow up in 6 weeks, and will start growth hormones in three months. We as parents are not so sure on the glasses thing yet, but might give it a try. She's got wandering crossing eyes and is far sighted. She had her blood drawn and smiled almost the entire time, had a bone density scan and some other x-rays. Every person we saw today all said the same word about Emmry-- STRONG. Isn't that the truth? Her name means bravery, strength and power. She's been through more than I've been through my 21 years of existence. When she gets older I can't wait to tell her the stories. :) We love you Emmry Adelynn. 

Welcome To Holland 
by 
Emily Perl Kingsley 


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

:(

So I'm pretty upset and I just don't understand why Emmry is having issues. The night after feeding her sweet potatoes for the first time ever was horrible! She woke up at least 6x screaming. So I took her for a check up the following day and she seems to be fine. So we continued with trying bananas.big mistake. She had 2 bites if that and puked all over! Everything, I mean everything. She acted like she was choking and it scared me to death. So...looks like we'll be waiting a while. I just feel horrible because she's so hungry still, but she can't swallow right. :/

Emmy Eats SOLIDS!!

I'm SUPER PLEASED to announce that little Miss Emmry has started solids today for the first time and is three days shy of 6 months. I have been holding off on solids and have strictly just been breastfeeding her because she was born with a higher palate due to her TS, which has cause many bottle feeding and breast feeding problems.

When we first brought her home she would throw up all over from her acid re-flux as well-- medicine made it worse!! Nothing helped, not raising her crib 30 degrees, slowly feeding her and beginning a feeding again: I mean absolutely nothing worked, but TIME! She now feeds about every hour still, but I wouldn't want it any other way because she's well nourished.

This first feeding went absolutely amazing!!!!! I've got butterflies I'm so stoked :) I even made it home made; sweet potatoes..she kept grabbing the spoon and self feeding. It was so awesome to see her thriving and she hasn't thrown it up!! Here are some pictures! WAY TO GO EMMY!!!!

Her first look at it!

digging in :)

Satisfied!!

                                                          SO PROUD OF HER!!

Emmy's PT/ NC Trip #1

So..I haven't been on lately! I've been extremely busy with all of Emmy's appointments, it's unbelievable. I feel like I haven't had a chance to breath. Emmry has started physical therapy for her lymphedema in her legs/feet and arms/hands. Some of you may know that Emmry was diagnosed with 45X Turner Syndrome, a rare chromosome make up for TS, because her x is wholly missing, so we were given the opportunity to do a  research study in NC. They flew my dad, Chase, Emmy and I out for 2 days did a bunch if tests/blood work and developmental assessments to try and better understand TS as well as try and find a cure. The results of everything have come back and Emmry is indeed below average in almost all areas, and one of the worst swelling cases they have seen. They said she has tibia torsion which is turning of the tibia bone which can cause her to walk or not walk awkwardly, and that her left side is EXTREMELY swollen and recommended she see a therapist asap. They want to see her in March again so she'll be going to NC every 3 months for the rest of her life. Here are a few pictures of her swelling feet--

That above is at birth- she has a fourth metacarpal in her toes so that's why they look like that.

This is the most recent picture.

Anyway- we came home after a very tiring two days of testing and started therapy asap. Only to find out it's doing nothing but forcing fluid too quickly which is causing stress on her body and heart, she's loosing circulation completely in her feet when wrapped, which she already has poor circulation from the dramatic amount of fluid. So Christmas Eve we called the therapist and he told us to take the wraps off until we see her cardiologist again. The therapy would consist of me doing massages 2/3x a day all over her body, unwrapping 2x a day, lotioning/cleaning/measuring and rewrapping. At the appts we would practice massage techniques, and practice wrapping than we'd meet with a developmental therapist who would make Emmy work hard at turning her body, and actually moving. She tends to just lay around a lot and sleep or constantly cry with some smiles and coo's here and there, but overall she's very temperamental. She has been diagnosed with plagiocephaly which is basically flat head where her skull is starting to shift- many babies get this from laying on ther backs or in their carseats too much. Her's is caused from torticollis which is the muscle in her neck. It only lets her twist to her right because low fluid at birth she was stuck in a position for so long so it hurts her to turn to her left. Were currently doing everything we can to make her more active, turn to the left and prevent her skull from shifting anymore or else she will be put in a helmet. Other than those new changes they now are sending us to SLC so Emmry can see her Cardiologist, Endocrinologist and geneticist to try and figure out why the swelling is-

•  getting worse since therapy
• how will this effect her in the longrun
• is this causing extreme stress on her intestines
• can we figure out how to give enough pressure to slow the swelling but not the oxygen or blood flow

Besides that she now weighs 11.9 and is 24 inches long! Good news from the NC research group was that they don't want to start hormones at 6 months because Mike and I are rather tall they think she might at least get to 5'2, if she starts to slow down again than they will reconsider, but hopes are held high for my baby, as always. 

Chase is loving his sister, and we absolutely are still blessed no matter what we have to go through to have her, because God only gives you what you can handle. 

LOVE FROM THE O'RILEYS! <3