10.31.2012

Halloween, champions, and Sawyer B

I decided to roll all these posts into one. I am not huge on Halloween and I don't care too much about costumes but we always do carnivals at school and do church events. Monday night before Scotty left, we went to the fall carnival at their school.



Stop getting big, LA!!! She is growing up so fast right before my eyes!! Sniffle.


No words.


She was casting on evil spell on her Grammy for taking too many pictures!


It was freezing. But the kids had fun. I left my jacket at home and did not have fun, lol:-)

Last night, Cade's team played their last game for the championship and they were undefeated and they won 38-0. They were so excited. Not many teams even scored on our defense. (hear that, hogs?) Ha:-)










I am glad that it's all over and I can reclaim my nights!




I was going to write a separate post for this, but I'll try to keep it short. I know I've been very vague and even ignored some of your questions, and I'm sorry. But I just couldn't not be vague until I had all the pieces of the puzzle together. If that makes sense? Anyhow, I appreciate the prayers for Sawyer so much even if you really didn't know what you were praying for. And before I get into this, please don't feel sorry for me or her. I'm past that and there's really nothing to be sorry for. I have a perfect and gorgeous baby girl. I prayed for her and she was a gift from God.



One of the best days of my life. I waited to put these monogrammed clothes on her and the big hair bows and I had just dreamed about it. Her birth wasn't anything I would have wished. I was terrified. I was hysterical by the time I was in the OR. She was a planned early section due to my complete previa. I lost a lot of blood as expected and had transfusions and all was well. She was perfect, I was fine. Life was perfect. Sawyer seemed perfect-she latched on right away after I was in recovery. Somehow though they didn't tell us her apgar scores were low. She never needed oxygen. We went home and she was a great baby. I noticed she didn't have a strong suck and that milk poured down her mouth. She had laryngomalacia, you could hear the stridor as she ate. Laiken had feeding issues but I just brushed SB's off. She started vomiting amounts of milk that seemed insane. She had upper gi and it was determined she was aspirating and had severe reflux. She was also failure to thrive. She was put on honey thick feeds to prevent food into airways. We had swallow study and she failed. They said she couldn't suck, swallow, and breathe properly. She did fine on thickened feeds and fattened right up. Sawyer seemed very strong. She lifted her head up and kicked her legs against me and could stand on her feet at like a month old. She loved to be on her feet. I have had 3 others and I thought this was strange, but had no idea it wasn't normal. She moved in funny ways sometimes. I've wrote about her four month shots, and I'm not writing it out again but I never noticed anything was wrong until after them. When I went to dr google and googled her "symptoms". At that time we had visited the children's ER for seizure and followed up with pedi, and in that time the words cerebral palsy were thrown at me. The same words dr google gave me. I honestly never knew the true definition or that CP had different types, that it ranged in severity, that it affected muscles. I knew nothing. I spent the next several months reading and learning. I would ask my friends and family if certain things she did looked normal and they would always say yes. I tried to convince myself she was fine. But her legs were stiff. Some days they'd seem normal or I'd convince myself they were. I think my friends didn't see what I was seeing because as an infant, these things don't look crazy abnormal. Until you know they aren't.



When she sits up, her legs look normal. But they are stiff. She has high tone. Her muscles are tight, and it is called hypertonia. She can't bounce or jump in a jumperoo, she can't pull up and stand because they are stiff. Her arms are too, but not as bad as ankles/legs. The neurologist said she has brain damage and basically, that's what CP is. This type is called spastic diplegia. It affects both her legs. And her arms mildly. Her face is floppy, where her limbs are stiff. Sometimes her tongue just flops out. Sawyer is happy happy and smiles at everyone. She loves to giggle and blow raspberries. And she's gorgeous. I've been conflicted as what to tell people, how I should say it, etc. As she gets older it will be more noticeable. She will need help walking-most diplegia babies don't walk until after age 2. Some later. It is hard because they go up on their tiptoes and their legs are stiff. There are braces and other things to help. She is beginning with a PT at a developmental preschool and I pray it helps her a ton. I just want the best help for her. I am not concerned when she hits milestones. I'm not concerned what others think. I've told a few people and they always say "she looks fine to me".. CP has a stereotype, I hope SB can show others that it's not always true. And as a baby, it's not that obvious because she's not walking, etc. I have had a lady comment on her "funny legs" because they do stick out in her carseat. I've found a girl on Twitter whose baby girl has a lot of the same issues, Laiken has a friend with CP, I've found out people I didn't know or realize they have CP. The Internet world does make this a smaller place and I'm thankful!! I'm thankful for therapy and modern technology.
Sawyer is such a huge blessing in my life and I'm glad God chose me to be her mom. I couldn't have picked a more perfect baby than her! She completed the pieces of our puzzle that we had been praying for. Just keep her in your prayers, I pray she will respond well to therapy and I know she will walk. CP is not curable, but it's not progressive either. I didn't mean to write a novel:-)
I just felt like being more open, and not being so vague.



I had to laugh. Scotty bought her this witch sleeper and the legs are hilarious. She looks like the wicked witch's legs sticking out, ha!
Happy Halloween!!

10 comments:

Tesha said...

Thank you for sharing with us, it must be difficult to know what to say. She is perfect and beautiful and I know Jesus has big plans for her life. You are a brave strong mommy, Sawyer is so blessed to have you. You are in my prayers my friend.

Sarah said...

I have to say this post has me in tears... SB is blessed to have such an amazing momma! You are such an inspiration. I'm awed by your attitued about SB's condition. You and that darling girl will remain in our prayers - I hope that the early detection and PT will help her immensely. Hugs to you, friend!

Taylor said...

Love that sweet baby and you, friend! Praying for all of you and I just know that sweet girl will thrive and that God has HUGE plans for her!!!

Melody said...

OMG, I had no idea! You are strong and she is beautiful! I'm sure she will be just fine. You, of all people, know the power of prayer and positive thinking. Love you!

The Momma said...

Love that sweet baby girl. You are right that she is absolutely perfect. God has a plan for her that we can't even imagine. I know she is going to blow us away. :)

Nancy said...

I wonder if massage therapy could be comforting to her as she grows? I wish I lived closely to you! I could massage both of you! Every girl deserves a little R & R :)
You are an inspiration as a mother, as a wife, as a go getter with your business online.
My hat's off to you, my friend!

Ashley E. said...

No matter what, Sawyer is perfect just the way she is! Love you girls!

Kim said...

Your kids are all so adorable!!! You are a wonderful mommy and you are doing the best you can for your baby girl so I'm sure she will thrive til the end. Sending lots of love your way!

Hillary said...

No matter what, Sawyer is and will continue to be the most loved, blessed, and wanted baby in the whole world!! Not only by you, but ALL of us too!! No diagnosis can compare to that sweet face and those gorgeous smiles :). She could not have a better momma than you to help her through any struggles she may face in the future. God knew exactly what he was doing when he gave you little angel! Lots of love to you!!

xoxoxo

Nicole said...

Thank you for sharing this with us. Gosh, Sawyer is such a gorgeous girl. Her sweet little face just makes me smile! She's so blessed to have you as her mama.

We will be praying that the therapy helps her tremendously. God has big, big plans for that little sweetie pie. No doubt in my mind!

"We can cry with hope, we can grieve with hope, because we believe with hope.."