Giggles and Tantrums

 Yesterday, this happened. Big smiles for daddy. He was tickling her and she gave us some great smiles. Look at that second one, she's even making eye contact. Simply amazing!!!

Then today happened. I gave her a little too much liquid, which she promptly brought back up, all over her clothes. Then she was wet and cold and couldn't have her fingers. I detached her from Grover and let her run for a minute while I cleaned the machine. She took this to mean, it was time for her first tantrum. Screaming at me. Actually yelling. A few years. Then she laid down and actually kicked her feet on the ground, while looking at me! To be honest, I was freaked at first. I thought something was wrong with her. I whipped off her clothes and cleaned her tubie and her tube, warmed her in up in some jammies. I changed her socks (on her hands) and the second the sock was off her hand, she sucked her fingers and stopped crying. Just like that. Little stinker, threw an honest to goodness fit. This is a good thing, annoying, yes, but good. She wanted something she couldn't have, and let me know about it. Now, hopefully next time, will be giggles :)

All Clear......

 She has the all clear! Carlee had her post-op appointment and is all clear for activity! She's gained almost a pound, and I think it's all in her cheeks :). She's doing really well, and so are we. We're trying to adjust to this new pattern, it's not so easy to just dash out the door right now, but at least I know I always have her food with me. Today we were all talking, which gets pretty loud, and I heard a new voice in the mix. I yelled "HUSH" and Carlee was yelling at the tops of her little lungs "BABABA" That was lovely to hear!

And There She Goes

Carlee is officially mobile. One day shy of two weeks post-op and she's mobile! We have ordered a much cuter (and smaller) back pack for her. When she falls over, she resembles a turtle on its back. She's too heavy in the back. The bag is half as long as she is. The new one is pink and a rabbit. And cuter. But she's off. We have post-op visit tomorrow and we'll have the all clear for everything else. Her site is healed up nicely. Her little button covers are so cute! (Thanks Mrs. Tiffany). She's doing well. She's getting feisty too. Tired of sitting so much and really angry she can't have her cup. She can only have a little bit at a time, so we give her her juice in a newborn size bottle so at least it looks full. All in all, she's handling it really well. Her cheeks are rosier and her thighs a teeny bit thicker. We've heard more sounds coming out of her mouth. She's amazing.

Finishing a Book and Other Vacation Fun.

*Insert Huge Sigh*
My mom just took me on a mini vacation! We didn't do much. A little shopping. Then we plopped ourselves down at the pool for a good long while. I managed to finish a book!!! I got a nice tan. Oh, and we ate! Yummy! Captain George's, where we pretty much gorged ourselves on crab legs and shrimp. Our condo was beautiful! Way better than anything I expected. The pool was beautiful. The sun was shining. Life is Good.

King Size Bedroom

King Size Bathroom

Fully Stocked Kitchen.

Private Porch

Me and my finished book.

Happy Vacation Sky.

POOL!

Vitamin D soaked feet!

CRABS!

Our New "Temporary" Normal.

Things will get back to normal, as normal as our lives ever can be. But for right now, we are living in a temporary normal. We get up. I change Carlee and her bandages, haul her and her swing downstairs. Replace her bag and hook her back up to her feed. Then I try to clean up what the goblins have destroyed in the middle of the night. I'm not sure what happens, the kids are asleep, but somehow the house gets destroyed at night. Shane is off to camp this week, so there goes my real helper. Catch up on laundry. Life seems a bit easier, which is weird, Carlee can't move around a lot right now, she's mostly in her swing or being held. I don't have to feed her, so that's a bit more free time. But it's weird, it's like things are easier, but more hectic. There are more things to keep track of. She can't have much by mouth, everything has to be by syringe, and measured carefully. People have brought us dinners, so that's been really helpful, no cooking! At nap we haul everything back upstairs and after nap back down, and back up for bed. If nothing else, I should be a little stronger after this. She goes back to the doctor's on Monday, hopefully they'll clear her for walking around. The site is really sensitive right now, if something were to happen it's a whole other surgery. After it's all healed, it's not as serious. So we're just being really careful right now.

She's actually doing a lot better than I thought. Not being allowed to have her cup, I thought would be horrible for her. She's quite happy to get her juice by syringe, but she's not angry about not having her cup. I'll be happy when she's back in her crib, but until that site heals, there's no way. She is actually sleeping better in the swing than in her crib, of course that may be the pain meds talking.

Tomorrow will be our first test, leaving the house. I have a sitter, so it'll just be me and Carlee, but that's for the best. We'll get to try out her backpack hook up. Also, her machine beeps. Loudly. I wanted to name it so I could yell at it. It's name is Grover. :)

A New Course.

We have emerged from our hospital stay. Whew, what a crazy few days. It all started at 3am when we had to get up to get to the hospital by 5:30am. We hit every single green light. We were in the hospital at 4:30. The check in guy said "You know you can't go up there until 5:30, right?" Um. No, I didn't. So I found an uncomfortable bench and did a Bible Study, while Ladybug slept. Finally we were allowed upstairs and the process of waiting began. Wait to check in, wait to be weighed, wait to see the nurse, wait to see the anesthesiologist, wait to see the doctor. Then the hard part of waiting came in, waiting for her to come out of surgery. There was a small delay, her awesome GI doctor had to assist the surgeon. He really didn't want to do the surgery the GI doctor had recommended. He said we could come back in eight weeks and add the Jejunostomy part later. I didn't want her to have to go through another surgery, so he said he'd "try" to do it at one time. He couldn't, but our GI doctor saved the day and got it done. I paced and tapped. I couldn't get my computer logged into to the connection so I read, and paced some more.

Finally they called me to recovery. Poor girl was out cold. Her little eyes kept fluttering and then closing. Her belly looked okay, not what I had imagined, but not too scary.

 We were taken upstairs and settled into our room. All the tubes and attachments had me a bit freaked out. Our roommates were blasting Spanish music and very annoying toys. Thankfully they were discharged after a few hours. I settled in for the afternoon, waiting for Johnny to get there. Doctors came in and out and no one was really answering my question. "I have NO idea what I'm doing." We had two really fantastic nurses. They got as many answers as possible. Home health people came and went. We were told we were staying two nights.

  I prepared for that. Johnny stayed the first night with her, so I could relieve the babysitters. My brother stayed the first night, which was an amazing help. Ladybug was doing well, but we still didn't know how to feed her or anything. The tv channels weren't so great, and I don't watch much t.v. anymore anyway, so I read a bunch of junk tabloids. I did watch the Zimmerman trial because it was rather entertaining. Mostly, I watched my girl.

There's a funny story I have with the diapers they use in hospitals. I always thought newborn babies had a certain scent. That scent always went away when we left the hospital. Well, Sam was hospitalized at 5 weeks old for RSV and I smelled the same scent, that newborn scent. Only then, after 3 children did I realize the newborn scent was really the diapers they used! Maybe you had to be there, but it was so funny. This time at least I realized what the scent was, and it wasn't a newborn. It's such a pleasant scent to me, that I almost teared up.

Finally finally the nutrition people came and showed me how to run the machine and we got charted some more with how much to feed her, and then we were told to go home. Just hours before we thought we were spending the night again (I even had sitters lined back up). We said goodbye to our nurses, and I was able to leave a nice note for them, because of the awesome binder that was made for us came with note cards. So we went to leave and it's POURING. We used valet and got girly comfy and left. It, literally, took 35 minutes just to get out of the hospital complex because of the rain and time (5pm) and traffic.

And then we were home. We had to figure out how to get all this stuff in the house and get her set up. I felt like I was coming home with a newborn. I was tired (though not in pain), meals were delivered, new things to learn, even laying everything out for a diaper change. But, we figured it out. The night went really well. Carlee is sleeping in her swing for now because the tubes stay on all the time, and I'm terrified of her pulling it out. After it heals it will be okay, but right now it would mean another surgery. So we're keeping her confined. She slept really well. The machine woke me up with a terrifying beep at 4am, but that was the only exciting thing that happened.

So we're settling in to our nearly charted path. I'm sure we'll get it all figured out soon. I'll be happy when post op visits are done and we can get on with our lives. Thanks everyone for your help and your prayers!

Gifts

I've gotten some amazing gifts the last few days. First was from a woman I know through foster care trainings. They just started going to our church and we've slowly gotten to know them. She stopped by the nursery to give a gift. It was a beautifully laid out binder. Full of pockets and pens and notecards. She left little post its on the sections telling me what she had used them for. (She's crazy experienced in hospital stays) and the bag was full of yummy survival treats. It was so unexpected. And so very thoughtful.

Then a close friend handed me a card for Carlee. I didn't open it until I got home, but it was full of adorable homemade button covers for her surgery. Again, just blown away by the thoughtfulness.

And if that wasn't enough, I had another friend ask me to meet her so she could give me a gift that she was so excited about. I met her at the doctor's office and she gave me the cutest little clutch with all of my kids on it! Seriously, how cute is this :)

My hubby said yes to my next gift! Zulilly had ErgoBaby wraps on a huge sale. I've always wanted one but wouldn't pay for it. I managed to get one right before the sold out. I am so excited. It's good to 45 pounds! Carlee is 23. So we'll get a long time of use out of it!

My last gift was straight from God. I was walking into the doctor's office. They are getting ready to move locations so they aren't taking as good of care of the front entry as usual. Right there in the middle of the sidewalk was a flower. Growing up right in a crack of cement. My Carlee will bloom like that. Through all the hard stuff, she will bloom!

Keep Calm And....

Carlee had her three year check up! THREE! I hate their forms we have to fill out. They assume your child is developing normally. I had to check 'not yet' on everything. But she said she looks good, and she's making tiny gains. Nothing that a chart can see, but the doctor could see it. We have the surgery tomorrow!!!!!!

My big boys went off to camp yesterday. I didn't have a problem sending Shane last year, but sending Jackson was a killer. He's a year younger than when Shane went, but he's my baby. So quiet and thoughtful. He was so excited to go. I know he'll be fine, but it's just so quiet here with only three. Matthew is already at a loss without his Shane. He's walking around "SHANE SHANE SHANE" and trying to get outside, thinking he's out there. It's going to be a long week. Then Shane leaves again for 7 days at Boy Scout camp. Poor Mattie is going to have a breakdown.

Speaking of Matthew. His new insurance card came in the mail. His old card was the last thing with his old name on it. I never again have to use his old last name and get stares and glares and questions. He's just Matthew A. now :) I couldn't be happier. I know one day I'll have to explain it all to him, but at least it will be my choice, not because some cashier says "Oh is he that baby!"

Prepare to be Wrong!

I came across this Ted Talk. A lot of his points struck home with me. A child who can't sit still, he needs to move to think. Ignoring the arts. Only focusing on making adults into workers and not thinkers. As my eldest son enters middle school, and after seven years of homeschooling, I'm changing my mind. Not on homeschooling, but on how I homeschool. We are using a new technique this year. I hope they will be able to not only read the classics, and do their math, but create, and try, and fail, and succeed. My favorite quote from this Ted Talk was "If you're not prepared to be wrong, you'll never come up with something original." He goes on to say that the school system and later your job makes a mistake the worst thing that could happen. So when we are afraid to fail, we don't try, and nothing new happens. It's an idea I wrestle with. My trying something new could fail my children, but what if I don't fail. What if we come up with a great new way to learn? To read. To write. To understand. To explain. To create. To be original.

A Ton of Bricks.

I stumbled onto a special needs blog, Love that Max.
She had a list of 20 reasons moms of special needs children "rock". I listed a few of my favorites.

6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.

9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.

11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be

18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.

source

As I realized that I related to about 90% of her list, the realization smacked me in the head like the cliched "ton of bricks." I am a special needs mom. My daughter has special needs. After this week, my daughter will be considered "medically fragile." If this had all happened a year ago, they wouldn't have called me for Carlee. We aren't "medically fragile" or "therapeutic" trained or approved. Our home wouldn't have been chosen for her. We wouldn't have been the best match. And yet, here we are. Three days away from a surgery that will flip our lives. Our daughter has officially been ours for just over a month. God's timing was rather perfect. She's ours and no surgeries or new titles or labels can take her away. I really have no idea what I'm doing. I read, and read, and read all I can about her issues, but they are so unique. I research therapies and surgeries and toys until my eyes and head hurt. We go to appointment after appointment. I've gotten really good at knowing which doctors have the least wait time, and how to get in when we need to be seen. And it dawns on me, it's just starting. She's three years old. She's dealt with more in the those three years than most people deal with in a lifetime. Her trauma and her medical issues, I've had my gall bladder out, that's it. Her needs outweigh everything I've known. And anything I ever thought I'd be dealing with.

I'm about to get down to business. Two boys go off to camp this week. I'll have a day and half to whip this house into order, throw some freezer meals in the deep freeze, and get the laundry done. When we come home from the hospital, it's all going to be different. It's a surgery I've wanted her to have for a long time. Something she desperately needs. But I'm nervous. It's all new terrain for us. We will still be heading to Baltimore for yet more ways to help her. Maybe the tube will get to come out. Maybe it won't. Maybe she'll talk someday. Maybe she won't. I'll never stop hoping for her, pushing her, or praying for her. So this becomes our new normal. Heh, who said normal was fun anyway!

Happy 3rd Birthday!

NICU photo.

 Three years ago somewhere in my town a baby girl, I didn't know, was being born very very early. She was 2lbs. 7oz. She spent and fought for six weeks in the NICU, 2 days with a grandmother, 1 year with her birth mother and a foster family, 7 months with her Great Aunt and Uncle, her aunt, all who loved her, but made the best choice for her to move her. Then one day God brought her to us. Our tiny princess. Carlee, you have fought hard all your life and you're a miracle and a suvivior. You have forever altered our loves and we love more than words can say. Happy 3rd birthday baby girl!

Beautiful weighted quilt.

Enjoying her cupcakes.

July 4th Part Duex.

July 4th Afternoon/Evening. Fun fun fun! Matthew got a kick out of the sparklers and smaller fireworks. He wasn't a big fan of the loud ones. We woke Carlee up and brought her out to enjoy the night with us. I managed to get a few cute pictures of my crew. It's the first holiday that they are all officially ours! She started seizing even without seeing the fireworks. I really despise seizures and every time she has one, I get so angry, because it didn't have to be this way. I know the anger does me no good, but when she suffers it makes me so sad. I was glad she was with us though, I don't want her to miss anything. She's our lovebug! It was a beautiful day, full of fun and laughter and the best part, my whole family together.