Laelia Sky

I forgot to update everyone on the doctor’s visit. It went well. We changed up Laelia’s diet a little and haven’t had any problems with food coming back up since. She is back to the energetic, talkative little kid I’m used to. We haven’t had a single problem in days so we even sent her to school today and rescheduled our OT/PT appointments.

The only issue we’ve had at all is Laelia’s new lack of interest in food. She only eats a few bites of food and is losing weight. I wonder if all the throwing up made her distrustful of food. I ended up giving her six little cookies last night for dinner because that was all she would eat, and I was worried about her wasting away. Chelsea also found some lactose-free milk that is packed with calories which she has been drinking a little of.

Well in other news, Lali looked well enough to pose for a few pictures for our Christmas cards this year. The picture above is one I won’t be using, but one I thought was cute. It’s the only picture where the hat is not driving her to hysterics.

We also put up our tree. Here’s a picture of it before the cats got to it. She now says, “Cheeeeeeeeese!” when you take her picture. It’s so cute!

Merry Christmas!

Lali threw up again this morning (Monday). We have a doctor’s appointment for her tomorrow morning (Tuesday). Between the stomach flu that’s going around and holiday schedules for doctors, it’s not easy to get an appointment, but since she has a gain-weight order from her doctor and she hasn’t eaten really anything much in almost a week, we get to take her in. I really thought this was behind us, but her hair and bedding are once again disgusting. She’s also having diarrhea. I Just pray this doesn’t last much longer. Now she won’t be able to go to OT or PT that she really needs. She has a broken splint that has needed fixed for days that she’s going without. I hope this is over soon!

I guess that last post first thing Saturday morning was the very last time we’d see stomach contents this year. (Knock on wood.) Maybe it was a fluke? I dunno. Anyway, the rest of the day Saturday went okay. That afternoon I gave her hair the baking soda paste treatment for two hours. She loved that. Yeah. Not. :) But at least it did the trick. No more puke. No more puke smell. I like it. Here are the pictures. I won’t give you the before shots (because I’m nice), but here are the during and after shots. (The white stuff is baking soda paste, not puke. The puke was orange.)

Not happy.

Daddy is making fun.

All clean!

I am so very thankful for my healthy family! Charley and I have been over this stomach bug since Friday so to see Lali (who started before we did) take this long to get over it was hard. She was her old self again today except she’s not eating much. She had three bites of toast with peanut butter for breakfast and two bites of green beans for a snack, milk for lunch and then three bites of spagetti for dinner. That’s not counting the countless things I tried to feed her that she spit straight out. We’re not taking to her to school tomorrow to see if she’ll eat and nap like normal. And if she looks fine and eats fine then we’ll take her to her PT and OT appointments which are long overdue because of Thanksgiving and also scheduled for tomorrow. In preparation for OT/PT I did Lali’s stretches today. Boy did she not like that! She was so stiff! I bet it felt good afterwards! I did notice her hips are a lot stiffer. I’ll have to keep an eye on them.

So far today I’ve cleaned my couch, my tables, my puke bucket, scrubbed spots all over the house, used up a can of Lysol and almost an entire box of baking soda (which takes the smell out of everything!), did the dishes, washed four loads of laundry (with soap and baking soda), changed the sheets, cleaned out the crib, picked up the living room, dusted the bedroom and put up our stockings and a Christmas tree! I’m feeling like super mom again! Charley, among a few other things, did all the vacuuming and is folding all those four loads of clothes as we speak. I’m also hoping he’ll take out the trash. Life is good.

Thanks for all your prayers and thoughts and support! Oh and advice! I’d never had the stomach flu as a family before. Not really the bonding experience I was going for.

Day Three

Lali woke up in a ton of puke and diarrhea again this morning. She’s on her forth bedding set, and since we only own one, we get creative with towels for pillows, etc. I heard something that sounded like gagging this morning and I was thankful that we remembered to prop her up last night so she didn’t drown in it since she doesn’t move much. She’s so miserable. And because of her arthrogryposis, her flexibility is poor since we can’t stretch her. Changing her diaper was hard since her legs wouldn’t relax.

She is keeping liquids down. Mostly powerade. Except this morning, I really thought she was on the mend. Thankfully Charley and I are doing a little better so we can care for her more.

Our tub clogged with puke. Apparently she puked in the bath one too many times. So gross. My whole apartment is SO gross! When Lali is doing better we’re going to use a baking soda paste to soak everything. But please no visitors! We’re definitely on quarantine! Thanks!

One sick baby puking up everything.

So her parents give her lots of love and care…

…and now we’re all sick.

Lali woke up from her Wednesday afternoon nap surrounded in puke. I put her in the bath where she puked three more times. By the time Charley got home she had puked 24 times. Around 11:00 PM I started feeling sick. By 2:00 AM I had puked 34 times. (Why I kept count I have no idea. I kept thinking a doctor would want to know this stuff.) The next afternoon Charley was puking… like twice. Punk. This thing hit fast and hard. We couldn’t even keep down water so we all lost weight. (Which was only a good thing for one of us: Mama!)

As of Friday night Lali is doing much better. She kept down two bites of banana, half a piece of toast and a bit of yogurt. Charley is eating again (his stomach stuff didn’t last as long, he even ate some nachos), and I am doing much better, but I’m still really nauseated and can’t really eat or stand up for very long.

This has not been fun. Wednesday night after Lali went to bed before I was even feeling the slightest bit sick I started a blog on how Charley and I were feeling this weird sense of normalcy at dealing with a sickness that you can easily Google and get parental advice on. There’s not a lot of parents who can instantly come up with comforting tips for post-surgery recovery, but lots of my friends and family had great stomach flu advice. And it worked really well!

So we were thinking about how normal it all felt. And how it was almost comforting to feel like we were dealing with “normal” parenting stuff. Then karma decided that we weren’t empathetic enough apparently! :-/

And if I may vent a little: STUPID ARTHROGRYPOSIS!!! Because of Lali’s arthrogryposis and the fact that she was really too sick to do stretches the last few days, she can no longer reach her mouth when eating things! She’s really stiff! It’s really not fair! She was on her back and I handed her a cracker and as best she could she couldn’t get it in her mouth without me hovering over her and pushing her arm down. (Because of the contractures in her elbows.) Stupid joint contractures!!! Hate them hate them hate them! So way to go AMC, for making this one “normal” experience instantly “special.” Boo!

But all in all we’re all doing much better. No more grabbing our stomachs and wanting to die. And Charley’s comments on my messy hair are becoming more bearable. (I had some puke in my hair for over 24 hours and didn’t notice.)

Oh and Lali learned to play Mario Brothers on the DS during this whole thing. It’s really cute. And she can say, “Baby sick,” which is heart-breaking.

We are so lucky/blessed/ecstatic that Lali is such a good little girl. She didn’t scream through this whole sickness even though it was miserable for her. She was very patient with two sick parents caring for her. She only fussed when absolutely necessary, and only cried before puking. If she had screamed or thrown fits this whole time, it just would have been so much worse. She really is the greatest little thing. Thank you, Lord God, for my great baby girl!

Singing Along with Rock Band

How do you keep a baby busy who has to sit all day? Get out some plastic guitars and a fake drum set and put Baby on vocals. :) The picture is of her doing her version of  Yellow Submarine.  Did the Beatles ever fuss when people weren’t watching? Hmm…

We’ve been doing good, just a slight cold running through the house. It’s decided to live forever in my face without getting better or worse. Nice. Does this get me out of reading? No. I still am required to read until my sore throat gives out and I start a coughing fit, and even then the little girl is pretty demanding about more stories. :) 

On a totally random tangent, I found I have an aversion to people saying they should “count their blessings” after seeing my kid (or a picture of my kid). Not cool. I don’t look at a picture of them and say, “Wow, thank the good Lord I’m blessed with the face I have; it could be a lot worse.” Rude. I know it’s suppose to be a positive thing–thanking God for your working body parts and all, but think before you speak/post/comment/blog. Seriously.

Okay tangent over. 

Laelia went to school today and once again I am impressed with how her language is developing. We had Subway for dinner and at one point she leaned over and said, “ah aha ah AH AH AH AH!!” like a baby bird who will drop dead without a bite of food. So I said, “Say ‘Sandwich please!’ and I’ll consider it.” So Lali responded, “Sa-wash peees!”

Oh gosh, she sure doesn’t like mustard. You should have seen her face! Ha!

Grandma Christina and Grandpa had to leave early this morning because Grandma got really sick. I’m starting to feel it in my throat as well. Hopefully it doesn’t spread further. Charley was blowing his nose, but that’s about as much as colds affect him.

Laelia seems to be fussy, but not with a cold we don’t think. Although sometimes I look at her and think it’s a cold. She’s very white and covered in big purple and blue bruises from four attempts at an IV line and one IV line mark. It looks awful.

I remember when we were in the hospital and I saw her for the first time after surgery and she looked so white and pale. Like death. All of the color was out of her cheeks, and my heart sank as I looked into that pastey face. Then THREE different nurses commented that she looked exactly like me! Yeah we’re pretty white in my Irish family.

Laelia used a toothbrush all by herself to brush her own teeth for the first time in her life yesterday. She also learned to “go on a bear hunt.” She slaps her casts to make the walking noise and can say, “Oh no!” when her troop runs into something they can’t go over and can’t go under and have to go THROUGH!!! Then she screams along with the rest of us. It’s just the cutest thing. Everyone surprised me with this when I got home from Deaf Awareness Day.

Okay well we’re resting up today and both go back to work tomorrow. The weekend went by too fast. What are the odds of a snow day tomorrow?

Bleh. Last night was not fun. Charley and I quickly discovered that we couldn’t take shifts when she only takes her milk from him and her medicine from me. And since she has to take calories with her medicine, we did this together all night. Charley still went to work this morning.

Charley kept trying to call a doctor last night, but they didn’t return his calls even when he said he was an insurance company or doctor’s office, and the number we were given in case this very thing happened “closed” at 4:30 PM leaving no operator there to help. So then I called some numbers I was given after her first tendon releases when she was a newborn and one of those got through to a real person who got a doctor!

We got into our pajamas then back into our clothes several times last night as decisions were made to take her to the emergency room and then plans changed. (Usually in tune with the texts, phone calls and facebook discussions happening around us. :)) Apparently last night I had no Mommy instincts whatsoever and was just waiting for someone to tell me what to do. Usually if it were not surgery-related I would just keep her home. But after a surgery, I was too scared to do that. But the doctor finally called us back around 10:30 PM as we were leaving for the emergency room, and told us to stay where we were since they had sent us home with all the medication we needed to handle this apparently. And sure enough we looked in our magical bag they gave us and saw medicine for the shakes, the higher fever, etc. Her temp was down to 101.5 by then and the doctor was happy about that. He says it’s not an infection unless it’s still around three days later. Of course he called us after we already had her awake and ready to go to the hospital, so she was pretty unhappy with us. At 1:30 AM she got more medicine and was down to 101.1. Then at 5:55 AM she was down to 100 even. Her shakes were also gone around that time too. Her throat is sore from screaming at us, but she’s looking a lot better this morning.

Tired zombie mommy is going to take a nap now.

2:00 AM Update. Laelia’s not doing well. Her fever is down to 101.1, but she is now shaking and spasming. We gave her medicine for that specifically. Doctor is not too worried about the fever unless we can’t get it down more soon. He said she would have to have it another day or two before he would think it is infection. Her heart rate is through the roof though. She’s so pitiful looking–all teary-eyed, shaky and smelling like burned meat. It’s hard to see her like this.

Laelia has a fever of 102, and it’s been high for a long time now. We tried to call the number they gave us in case this happened and they’re closed. So, yeah, great, thanks guys. She’s covered in cold washcloths, a diaper and her cast, and that’s it, but I can still feel the heat rolling off of her. She just had more medicine a little early too. So now we are debating whether or not to take her to the emergency room. She seems to be in more pain now too. Weird relapse? I don’t know. We have to stay up all night with her, so we’re taking shifts. If it gets higher than 102, or doesn’t at least go down a little soon, we’ll rush her back to the hospital. I hope we don’t have to do that since moving her seems to hurt a lot.

PS: Her pain medicine is *suppose* to help with her fever, but it’s not working. (It also says not to drive a car while on this medicine. I’ll see that she doesn’t. *rolls eyes*)