Friday, June 29, 2012
First of all, we're out of the hospital! Wahoo!
Annie must really be missing Jersey. She named her white bear after him. :) She carries this bear everywhere- even though it's almost as big as she is- and she won't sleep without it. She loves to pet him too! Lol
We'll see the real Jersey tonight. I think we'll have a happy little girl tonight. :)
Thursday, June 28, 2012
Parting with Annie's hair was easier than I expected. She's always gorgeous!
My bff made a comment about how this shows her strength to the world. Like a person fighting cancer.
Annie's surgery was not for a life threatening condition per se, but she's a fighter regardless, (and it may not have been immediately life threatening but it could have become so. Not to mention brain surgery is always a risk).
From conception she's been a fighter.
I'm about to mention abortion. This is not the main reason for this post, so please push through and read this post in it's entirety, regardless of your abortion beliefs. :)
There are at least 4 reasons why she could have been aborted. I'm not going to share them all, but I will share one. Spina Bifida.
I read an article about a woman who was married and planned her pregnancy, and at 20 weeks found out her child had Spina bifida. She aborted her baby.
It made me want to throw up.
My point is, many people deem Spina Bifida an acceptable reason to have an abortion. This reason, among with at least 3 other reasons...Annie easily could have been aborted.
I praise God all the time that she was not.
Annie was born almost 2 months early. Fighter.
On top of being a preemie, she had to fight Spina Bifida and hydrocephalus and needed immediate surgery. Fighter.
She then ended up in foster care. Won't tell you why, but know she's a fighter.
She joined our family and has since endured 4 brain surgeries, countless Dr/hospital visits, weekly therapy sessions, etc. Fighter.
So as I said, her baldness may have not been caused by chemo, but it's her crowning glory none the less.
It proves she's a fighter. She's a survivor.
She is our absolutely gorgeous, priceless princess!
She's the strongest member of our family, and she's probably stronger than many others.
She blesses us more than we could bless her!
With her curls, she used to favor little orphan Annie, but now she favors Daddy Warbucks ;)
Wednesday, June 27, 2012
Monday, June 25, 2012
Annie's past surgeries were supposed to take 45 min-an hour. Within 20 minutes the Dr would come in and announce he was done.
Today we had a new Dr at a new hospital. He told us surgery would take a few hours. I asked if he was certain, he said he was. I was still paranoid when we left the hospital.
It did in fact take hours, 3 hours.
The surgery was to cut in, to cut her cyst, add a shunt. They were also going take out her other 2 shunts. So that would be 3 incisions/brain entries and an incision in her abdomen.
Surgery went great. They ended up taking out one of her shunts, (it had 2 catheters and they took both out). They left the other shunt though because it had collapsed a cyst which has stayed collapsed. :) She has many cysts, so one less is gold! (and they didn't have to cut her abdomen so yea). :)
She had a huge cyst with a few smaller ones around it. Thankfully, the Dr believes the smaller ones are communicating with the large one so we're all hoping when the large one shrinks, the smaller ones will to.
She'll have a follow up MRI tomorrow to make sure everything is working well.
Her recovery is usually super smooth. Not today. By the time she gets back to the room she's usually sitting up, eating, etc. Today she feels like garbage still. :( Pray she'll feel better soon!
We cut her hair pre surgery and it turns out they shaved half her head. :( My beautiful baby is temporarily bald. :(
Surgery scheduled for 9:45 am. Pray for safety, (this is brain surgery!) and that this fixes her cyst forever, (this is surgery #4 to deal with this cyst. Every time you open the brain it increases the chance of infection-I want this cyst gone for good!)!
Yes, this will be the 4th time I'll hand her over for surgery, but that doesn't make it any easier, (heck, I don't like leaving her period, much less knowing I'll be leaving her in a risky situation!). Prayers greatly appreciated!
Here is a pic from Sunday on her way to get her (sedated) MRI. She looked like a little princess :) (dog was given to her by a nurse who did her ivs). :)
Sunday, June 24, 2012
Saturday, June 23, 2012
Ok, so Annie will have surgery, ON HER BRAIN, on Monday. Yeah, nerve racking, no question.
But Sunday may bring Mommy some tears. Completely insane tears no doubt.
We have to cut Annie's hair. :( The reason I did the hair post last week is because I had a feeling surgery was coming soon- not this soon-but soon.
We have been growing her hair since it was last shaved in February 2011.
I am not ready to part with it!
I know it's crazy. My baby girl is facing brain surgery! I shouldn't care about anything but that, but Sunday I'll say goodbye to her hair.
Monday I'll worry about her, believe me, but tomorrow I'll she'd a tear or two over her hair.
Thankfully I have a ton.of flowers and headbands so she'll be hooked up! ;)
They will operate on cyst (it's not necessarily causing the sleepiness but it's def a problem). More tests will be done first. May remove shunts- not sure plan yet..This will be her 4th brain surgery-not one has been for her hydrocephalus, all for this cyst which any healthy child can have. Pray that this will fix the cyst issue and fix her sleepiness, (wishful hoping that there's nothing else wrong lol).
Friday, June 22, 2012
We've been.admitted to the hospital, (praise God!). We will be seen by in house pediatrician and if they can't find anything wrong, the neurosurgeon may intervene. Pray that if intervention (surgery) is necessary then it will be obvious!
Even in the midst of the stress of the unknown and the torture of my child, (CT, xray, iv, and a shunt tap-placing a needle in her head!, etc), I'm still loving every second with my angel!
Earlier today I was holding her I'm my lap and we had just had some candy, (she'd look up and say, "I want candy.").
She looked up at me and said, "I want a kiss!".
She preferred a kiss over candy! Be still my heart!
Now she's sleeping next to me- after 2 rough days- she's COMPLETELY CONTENT cuddling up next to me. :) Everything is right in her world as long as I'm here! Best. Feeling. Ever.
Going back to hospital, (main campus now), to demand to see a neurosurgeon. Something is wrong that needs to be addressed. yesterday one of the things they ruled out wad leukemia- had I known that was even a suspicion I would have fallen out of my chair-praise God for no leukemia!
Thursday, June 21, 2012
We will be taking Annie back to the hospital this morning.
I failed to mention why she was in the hospital last week in the first place. For almost 2 weeks now, Annie has gone down at 8 and slept past noon. If I didn't wake her up, who knows when she'd wake up! For a child with hydrocephalus, 2 shunts, and a cyst on her brain, this is not good.
Er Dr said the cyst looked the same and to come back if symptoms didn't improve.
I've been unsettled all week, but not worried per se.
I couldn't wonder any longer.
I spoke with a few knowledgeable friends(one who was a neurosurgery nurse) and they all concurred that this is not good and we should take her. Like I barely got out anything before they said to take her. I said how she wasn't exhibiting any other symptoms, but they said take her!
Prayers greatly appreciated!
Here's a picture of Annie last week in the morning...later that evening we took her to the hospital. Here we go again!
Wednesday, June 20, 2012
I've got some scandalous news, don't give up, read on till you find it...
I heard about a blog by the above name years ago and my friend Ivy recently reminded me of it. I need to read it again-badly!
I just love love love Annie's hair. It is completely different from my own, and I still have a lot to learn in caring for it.
The main reason my hair is brown is for her. I learned from the afore mentioned blog that chocolate girls ;) tend to dislike their hair, etc. So, I went natural in the hopes to teach her to be happy with the way God made her. :)
Y'all, I have some infuriating news! I will not say who because I don't want to hurt this person's feelings and I would ask that if you're family,(on either side, I'm not saying which), please don't talk about this amongst yourselves in the chance that the guilty party could hear and feel bad.
Ok, recently someone who loves Annie very very much washed her hair because they love taking care of her. But, when this person found the back of Annie's head to have pretty bad knots, this person cut her hair.
Yes, CUT.HER.HAIR. Without my permission.
And that's not the worst of it.
This person cut INCHES of Annie's hair off the back of her head ONLY!
Y'all, like a reverse mullet. Their reasons were 2 fold: 1. It was impossible to brush through and 2. It'll be more convenient to do her puffs and have short hair in the back.
Ok, first of all, it takes hours sometimes to brush through chocolate hair! Just today I sat Annie in front of a movie and brushed away. (more on that later) :) This person didn't talk to me to find out that info, they just grabbed the scissors.
Secondly, the puff thing. Yes, I see it would be convenient...IF I was planning on having her hair in puffs her entire life. Once it gets longer I can braid it etc. Right now her free hair looks crazy cause, well, half of it is missing! And braiding us out fur now. I have no choice but to do puffs exclusively for the time being.
I'm asking you not to share this story amongst the family because the person I'm referring to had what they thought was our best interests at heart. I did not tell them how upset I was, and I appreciate it if they didn't find out via this blog or gossip.
That being said, I truly am upset. Not so much at that person, just more that her hair is gone. Annie had 3 BRAIN surgeries in 2011 alone. It took over a year to get her hair to the length it is, only for it to get chopped off. Also, Annie's cyst that was the cause of the 3 surgeries is large but has been stable for the last year. We literally are waiting for symptoms to arise, and we know it will have to be addressed, (hence her hospital visit last weekend). So far so good, but I was hoping the next time her hair was cut was for surgery, not a SECOND sooner! :/
Ok, let's move in a bit. As part of Annie's Aspirations, I committed to taking a deliberate photoshoot of Annie at least once a month, and I committed to buying her flowers for that shoot. Hence why I was brushing her hair so well today. :)
I took 2 pics of pics off my camera to show...when we get the internet I'll post the real pics. :)
I also took prep pics...Annie playing in the ginormous tub, (yes I'm in love!), and Annie's hair to try and show you the disaster! One pic is of the back of her head with one lone curl- that was how long her hair was! :( Another pic had her hair parted to show the difference, while another is a side shot and the strange line of sjin you see is her shunt, (in case you were wondering). :)
And I included the Annie inspired "art"piece from yesterday simply because I just love her hair-in real love and in paint. :)
Tuesday, June 19, 2012
I'll admit I'm crafty, but I am not artistic. I can't draw to save my life.
However, I bought a painting a few days ago of a faceless girl that looked like Annie. Today I searched etsy for more pieces, (which I may still buy), and was inspired to give it a go myself.
Here is my mixed media/medium (which one is the correct? Lol) minimalist painting of Annie...
I glued it to a frame I had and now it's hanging in her room :) the burlap dress and gingham bow were pieces of fabric I used in her room, and the lace is from the hem of my petticoat for my wedding dress. :) Also, the red and white dress is reminiscent of Annie the movie :)
I'm not very artistic, but I'm proud of this painting of my baby girl. :) Definitely took me out of my comfort zone.
I think this all the time, and it's truer than true- Annie is Mommy's Muse!
(please excuse the strong silver lines on the painting when it's on the floor- it doesn't look like that in person- it was the lighting in my kitchen). :) (PS, I'm still working on finishing up the house. Once I finish, and we get internet, I'll post pics! Sorry for the delay!). :)
I had always planned on dropping the characters when we were done with adopting. I started it 2 years ago so I could refer to the kiddos by a name instead of him or her, etc. Well, we're done adopting, so we are characters no more.
Well, we're still characters, we just don't go by the character names on this blog. ;)
Yesterday, I caught Annie being a character in many cute positions around the house. :)
Monday, June 18, 2012
Sunday, June 17, 2012
I hate the Cowboys, but he loves them and since it's father's day I guess I suck it up and post this pic for him...besides, Annie has a great smile. ;)
Saturday, June 16, 2012
But really, those are not reasons to adopt.
After months of prayer and back and forth, we've decided to leave Annie an only child. Yes, I'm one of those one child weirdos! Lol
Thanks for your prayers for Briar Rose. We never had a particular child in mind, but it was still hard to let go the thought of our Bristol.
We do not plan to have more kids, but God has the final say so I won't say we will never adopt again, we just don't plan on it. :)
Friday, June 15, 2012
Yesterday I forgot to post about another miracle through this whole nose ring ;) experience.
Before I get to that, here is a miracle I alluded to yesterday. God has, more than once, got us to the hospital with fears of her head, only to find out we really needed to be at the hospital for another, worrisome, reason.
The Dr walked in and told me her CTs were unchanged. Good news. But then why did he enter the room with 2 other Drs, quickly...
They told me about her earring back, and left me perplexed as to how it got there!
Well they couldn't remove it so they set us up with ENT the next day.
But still, why are the er drs so anxious to remove this earring back that is not causing her any discomfort...
We found out why at the ENT the next day.
If they didn't remove it asap it could aspirate and land in her lungs. HER.LUNGS!
How in the free world would we have ever discovered this earring back?!
This seemed like such a small, insignificant, humorous issue, but surprisingly it could have been really really bad.
God is so faithful!
Thursday, June 14, 2012
10 points if you get my "extractification" reference. ;)
Annie update: her CT looks the same, so we're just watching her to see if symptoms arise, if not she's fine.
HOWEVER, we found via xray, (she was exhibiting zero symptoms), that there was a back of an earring up her nose! She never puts anything in her mouth even, so this was a shock to us! They just removed it with ease, praise God!
God is crazy faithful...this is not the first time we've gone to the hospital only to find we needed to be there for other reasons- only God!
An even bigger miracle occurred this time around...
I am leery about taking/giving medications, etc. Annie has had so many cts in her short life, it's a wonder why she is not glowing from the radiation. ;)
A friend of mine who has a baby girl with hydrocephalus too feels the same way about meds and cts, etc. I spoke with her yesterday and she said I should request an MRI instead of a CT. Genius!
Well, I forgot to follow her suggestion.
Praise God I forgot! Her otherwise very wise and welcomed advice would have actually caused damage in this situation, (though it's advice I plan to follow in the future cause it is a good idea). :)
MRI machines are giant magnets. You have to remove everything that's medal from your body before entering the room!
Just thinking about what shape her little nose would be in had we done the MRI...
Let's just say, PRAISE GOD! Seriously brings me to tears...terrifying thought. PRAISE GOD! He is just too good sometimes! Well, all the time. :)
Here is a pic of her enjoying a lollipop after her extractification. ;) She's had other lollipops before, but she hasn't taken to any, until now! We WILL be buying dum dums at the store to keep on hand at home as treats! :)
Wednesday, June 13, 2012
Seriously, "Best Baby of the Century," awards committee, I am waiting for Sweetpea's award!
Not only did she transition flawlessly last week, but unknown to me she was/is getting her top 2 year molars. I've heard these were the worst, but from my experience with her, they're NBD. Well, except for the fact that she slept 14 hours yesterday night, and would have slept longer but I had to wake her for therapy. I'm interested to see what time she'll wake up today.
Transitioned like a champ, and is cutting those teeth like they're nothing too...
I love my angel baby extraordinaire!