Carlee Update-----Feeding Clinic

Hi All,

Blogger has finally let me into my blog. It's been blocking me for some time, hence the lack of blogs. I have some huge updates on our baby girl. First, she's making HUGE strides. She's playing with toys that are appropriate for her adjusted age. Her doctors and therapists agree that she's moved beyond her 0-3 month development and is well into 4 months. While this seems small, as she's 3 years old, she's been "stuck" in a newborn stage for months. Her development has blossomed in the last month. The feeding tube has been nothing short of a miracle. She's gained almost 6 pounds! Her hair is filling in and her cheeks too. Her eyes are lighting up. She no longer has purple rings under her eyes. You can just see the life pouring back into her!

We were referred to Kennedy-Kriger Institute in Baltimore. They have one of the best feeding clinics on the East Coast. We had to wait a long time, both to get an appointment and wait for the adoption to be final so she would be on our insurance. So FINALLY the time came. Carlee and I went up to Brandy's on Wednesday so I wouldn't have to drive into Baltimore. The weather was horrid and the traffic was bad and I thought we would never get there, but we did. Brandy drove us into the city on Thursday morning. In the rain and traffic. Then we waited some more.

Three doctors/specialists came in. They sat with us for over an hour and listened to her life story. Which is long and sad and still makes me angry. Then they watched her eat a few bites of food. Poor little thing gobbled it up and then immediately started gagging herself. They within in seconds said that it wasn't just rumination. This was HUGE news. Rumination has been her diagnosis for awhile now, something that is psychological, and not something actually 'wrong'. They said her swallowing mechanisms weren't working properly. Her food is sitting on her gag reflex, causing, well, causing her to gag. I told them that she can throw up hours after she eats. They gave me a big long medical word. When your body isn't getting the right nutrition, it can make itself throw up. Which is probably what was happening. They gave me a very detailed feeding plan. The goal is to get her to tolerate food enough that she can lower what she gets on the tube until she doesn't need it anymore. It's a long process, but it's so much more hopeful than anything we had before. We were also given a plan to raise the amount of food she gets by tube per hour so that she can have time off the tube. The goal is 12 on and 12 off. This means she could either go all day free of the tube OR go all night free of the tube. We'll probably choose night right now because she's sleeping in her swing and I'd love to get her back into her crib. It's just too big of a risk right now with the tube.

So here's the sad part. They said the cause of the this probably stems from poor feedings her first year of life. Because she was a micro preemie, they believe she wasn't fed properly her first year. That her formula was thicken with cereal and that she was probably offered baby food too soon for her adjusted age. Because her swallowing wasn't good enough, her body started the gagging as a defense mechanism to keep from choking. This all seems to make perfect sense from what I've heard about her first foster family and from the medical records I have. So once again, this was something that could have been prevented by proper caregiving. But I won't dwell too much on that.

She's now had three meals and has only gagged a few times, keeping nearly all of it in her body. She's eating 2 ounces of stage 1 baby food and a few puffs to keep her chewing in tact. She's allowed only 1 ounce of liquid a few times a day. But she's doing amazing. She just started on a new seizure medicine. Her seizures have been getting out of control again. This is typical for Lennox-Gastaut Syndrome. We have her on the new medicine and her old medicine. Hopefully this will control the seizures without causing any delays in her development.

Well that's about all. Prayer works and God is amazing. Our baby girl is slowly showing us who she is and I bet she surprises us all!

Carlee Update

For one glorious minute my daughter was 'all there'. I got her up from her nap and her eyes were bright. She was baby babbling. I tickled her under her arms and she smiled, then giggled, then laughed, and then laughed so hard that she snorted. She was looking at me, right in the eyes. For sixty seconds I saw who is hiding behind the diagnoses that have been thrust upon her. Then it was gone. I saw her leave. Her eyes a little darker, not as aware. I changed her and brought her downstairs. She played in her way. Her favorite thing is to look out the glass door. It's a cut glass door and it throws pretty lights and distorts the view outside. She loves to stare out of it. As usual, after about 15 minutes she was getting overwhelmed. I put her back in her high chair where she promptly had a seizure and then fell asleep. The seizure and the play time were just too much.

Carlee is going to be a big sister again. But not by me. Her birth mother, is pregnant again. Her twin brothers will turn a year old this month. They were born with no prenatal care. She went to the doctor for the first time when she was 27 weeks pregnant, found out she was in early labor and that she was having twins. The boys were born at 29 weeks gestation. The grapevine has her at about 25 weeks pregnant, and still no prenatal care. Carlee was born without prenatal care at between 24-27 weeks at home. The illness she contracted from her mother was solely because she didn't receive prenatal care. The illness should have killed her as a preemie and should have killed her when it flared at one year of age. We live with the knowledge that it can flare again at any time and may take her life. We are vigilant about monitoring her for signs. I honestly don't think her birth mother has ever realized what she's done to her children. I don't know if the boys escaped Carlee's fate or if this baby will. I pray they do. Sometimes my anger at her boils over. I have moments where I want to physically hurt her for what's she's done and continues to do. I will never understand why some woman have to work so hard to have a child and she can just keep having them willy nilly.

I can't live with anger. It's doing no one any good. Really, it's only hurting me since she has no idea. Over the past 17 months the anger comes and goes. When she was in the hospital I was boiling. When she wakes having seizures, I fume. When she can't even walk across a flat surface without tripping, I wince. But most days, I'm fine. I get the immense pleasure and honor of raising this beautiful being. She's teaching us what really matter. She's gaining a few pounds. Her hair is growing in, and it's in a cute newborn hair, all spiky. More and more we see who is hiding in her little head. My husband mentioned "We don't know what she sounds like, what does she sound like?" I can't wait to find out.

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. :)