Prayers Needed

I wish I was just writing about the birthday celebration we had for Chloe, but I'm not. What's on the forefront of my mind is Chloe being sick.  She's had a fever last week and on Saturday and then she has a cough, but now it seems she barely has a voice.  Poor girl, we're afraid this is turning into RSV - which just means a cold that she can't handle well by herself. Luckily we have some arbuterol from last year (I thought we didn't but we did).  It helps open the airways so we started giving that to her. I'm calling the doctor in the morning. Chloe just had her 2 year appointment on Friday and the doctor mentioned not liking the sound of her lungs, but Chloe wasn't cooperating well as she knows that room is the "bad" room where she gets her shots.  She just had the last sets of RSV shots on the 18th.  These don't prevent RSV, it's suppose to help fight it so she doesn't end up in the hospital. Grrr, sometimes I feel like a hamster on a wheel. Round and round, same thing as before.  I trust God and his plan, but I hope we are not being negligent somehow - not taking her to the ER or something along those lines.  At least, Joel pointed out, she is still acting like herself, wanting to play. We are watching what she eats because it does seem her appetite has decreased.  We are pumping her full of fluids, though. I even got some Pedialyte. She missed her party on Saturday.  She was so cranky at the start of it that we put her to bed and she didn't wake up at all (except when I woke her to change her diaper and put her into pj's). 

I wanted to talk to about how she is almost 30 pounds and is 33.5 inches long.  That her party was a "Dress Up" party.  I got the idea Thursday night.  She likes dressing up, so that was the focus.  We put out the dress up stuff and Kylie and her (they were the only kids except a 6 month old) dressed up.  Then we had "dress you salad" and "dress your dog" with some other food as well.  It went really well, except Chloe wasn't there.  She opened her gifts today. Kylie wants the Dora costume and swim doll that Chloe got.  Oh boy.  Great time to learn lessons in sharing and you can't always have what others have.

I also wanted to post pictures.  Someday.

The main focus is just making sure we are attentive to Chloe.

2013

2013 has arrived.  It feels like my accelerator is stuck at 80 mph and I can't slow down. I need to slow down as soon I will crash, but I don't know how.  Work is worse than home, I think. Or that's the way it feels because at home I can stay up late to get some things done whereas at work, I have to leave at 5 to get the girls. For some reason I feel like my workload is 5 times that of what it was last month. But it's to be expected now that year end is done and we have goals to meet in 2013. I just have to find a good way of managing it. My cubicle has exploded with paper recently. I don't notice so much because I work on a computer so I don't really notice until I'm leaving for the day or walking into the cube.   It's bad because we have a policy at work that we need to lock up confidential information, which is every paper.  I'm playing it safe.
As for home, I got down the Christmas decorations last Friday. That's not too bad, but my filing system at home has also exploded for some reason and we have tons of paper and other things that I need to take care of soon.  Plus the taxes. Plus filing out school registration for Kylie when that comes in the mail (should be soon). Plus keeping up on bills. Plus Chloe (and Faith's) 2nd birthday on Tuesday (plus getting a birthday card in the mail for my dad as the girls share his birthday, he was born waaaay before them : ) sorry dad, it's true).  Plus I'm scrapbooking this weekend - more for a get away and maybe birthday party planning than actually making progress on a scrapbook.
I may have fallen behind at home because I'm trying to do more with the girls as they are only this age once and we should be having fun.  The other night I told them to play dress up. Kylie was all over it. Chloe, a little hesitant to put on a princess dress, but she is all about the shoes. I did get a dress on her and she didn't seem to mind once it was on.  I see Kylie as the princess and Chloe as the hip mom when it comes to play time. I also found some games in a cupboard that Kylie could play (Scrabble Jr, Nemo, and Boggle Jr) so we play one or two a night after Chloe goes to bed. I love games. We even got Joel to play Nemo with us last night : ) He's not really a board game person.

We finally received a bill from the pharmacy for Chloe's RSV shot.  Strange thing is it's for the November shot. Not sure why it took so long.  The pharmacy called me today to get consent for the January shot and told me I had two bills outstanding. I told her I only got one, so she is sending the other one for December.  What are we paying out of pocket for 2012 you might wonder? Just for these shots: $1,287.  Good thing we have an HSA account. Each month total cost is $5,855.  Just over $29,000 for 5 months!  I have a high deductible of $2500 before insurance starts paying 80%, so I know what January's bill will be. WOW!
I was looking at the 2012 claims and a month of these shots is almost equivalent to a day in the hospital. The dosage is based on her weight and she weighs about 29 pounds so that's why it cost more because it comes in 2 vials. So when we go to the doctor's office, they get 2 nurses to each shoot up a leg.  She is going to be so scared of that place in a few months, poor baby. She doesn't cry for long, but still those crocodile tears make me sad. I know it's for her own good with her in daycare, kids are always sick there.

Hopefully I'll post some birthday pictures next week. Stay tuned...

Merry Christmas to All!!

Wow! I thought the time between Thanksgiving and Christmas was fairly long, it was an extra week compared to other years, but I can't believe it's come and gone already!  I'm glad I was wrapping presents when I did.  I thought I was a bit early on the wrapping but it turns out that it was perfect because closer to Christmas I had no time.  We got the girls small trees on sale after last Christmas that never did get finished decorating them.  Kylie's tree is pink and Chloe's is purple.  Of course we let Kylie pick the color first, not sure what will happen next year if Chloe's favorite color is pink.  I might have to change the name of this blog to "Sisters Fighting"  They do it already, Kylie will get in Chloe's face and smile and be nice, but Chloe likes her personal space and will yell out. Joel penned this move as "pterodactyl." We'll say "Why are you pterodactyl, Chloe? Kylie, she does that because she doesn't want you in her face."
I got our Christmas tree up 2 weeks before Christmas, but I haven't really had time to enjoy it. It's in our downstairs so the mischievous Chloe won't try to take all the ornaments off the bottom. We had it there last year too and I would have time to sit by it and read or just enjoy it.  This year it's my own fault for not doing that more.   I've had other things on my mind. Plus I was trying to find something for Christmas stockings that I never found.  Last year in Target I found Lindt chocolate angels. I put them in the stockings as a gift from Faith.  I wanted to do that this year but I couldn't find any.  There were plenty of santas and bears, but no angels.  Maybe they didn't make them this year.

I'm not really into writing right now. Maybe later I will fill in the presents the girls received. I'll see. My mind is trying to multitask and that doesn't work well when trying to write a blog.

Happy New Year!  In case I don't write for awhile.

Oh - Chloe had the second RSV shot on Dec 20.  I haven't seen the bill for the first one yet, can't wait.  I think I'll only have to pay a little of it and then I reached the $5000 max on my health insurance and they'll pay the rest.  Too bad she has to get shots in January, February and March : ( Won't take long to meet that deductible. Actually, I pay the first $2500, then I pay 20% until I reach $5000.)  Hopefully after the winter we can all stay healthy and out of the hospital!

Just a quick update. Chloe did get the RSV shot, which in reading the paperwork, doesn't prevent her from getting RSV (not a vaccine). It can help lessen it so if she does get it, hopefully she won't be hospitalized.

All else is well. I'll try to post later, right now I just wanted to put this petition up. It's for closer monitoring of twin pregnancies.  We were lucky, once we found out that I was monitored closely, other women are not so lucky.  I don't dwell on this but what could have helped Chloe and Faith was to be diagnosed earlier than I was. There was a couple opportunities but I don't want to get into that because we can't change the past, only the future.


<a href="http://www.gopetition.com/petitions/identical-twin-safety-initiative.html">Identical Twin Safety Initiative Petition | GoPetition</a>

Banging My Head Against the Wall

"You have got to be kidding me."  I told the nurse at the doctor's office this morning when I brought Chloe in for her RSV shot. They didn't have the vaccine. I called the pharmacy on Tuesday to make sure it would be there, they had said something about giving consent in October but I had heard nothing so I called.  I gave consent the representative said that they can release it to the doctor's office and it should be there by Friday. It wasn't so the office was going to call and I called as well.  Somehow I missed on Tuesday that the doctor's office needed to call and work out the delivery schedule, that's why they didn't ship it.  I guess it obviously wasn't clear when I said "Her appointment is on Friday, the vaccine will be there?"  The answer was "yes, we ship overnight."  So maybe she will get it on Monday or Tuesday. 
I was getting a little irritated and I told the representative today that Chloe's suppose to have these shots November through March and I'm getting concerned we're halfway through November.  Will they still be effective if she misses the first one?  I also a little worried she'll get RSV before she receives the shot.
I put my trust in Jesus, it will work out.

This morning Chloe used her little potty!!  The only thing is she was holding her washcloth (for her bath) between her legs to catch the pee.  ??? My only thought is she thinks that's how it works and doesn't understand yet we go, then we wipe. Not wipe as we go. I gave her praise for going. Hey, washcloths are cheaper to wash than buying a pack of diapers.  Chloe is also saying 'yes' and 'no' instead of always nodding her head.

I love my family. : ) We've been through a lot, but I can truly see the blessings we have. 

Chloe had her adjusted age 18 month assessment on Monday. It went great! She didn't get referred to any services and she doesn't have to come back for an adjusted 2 year assessment!!  I think she really showed up the physical therapy folks. She was running, trying to jump, kicking and rolling a ball, doing her yoga ball (she lays her belly on the ball with hands on the floor and balances quite well).  Her range of age is 18 months (because she only has 20 words which is 18 month old) to 23 months (she understands tons). She is short for 21 months (her real age) at 2 feet 7.75 inches, it's the 13th percentile.  She weighs 28 pounds and that's the 87th percentile.  The doctor said she doesn't need to adjust to 18 months because she is big, fine by me.

Playing Catch Up

 



 

 As you can see by the pictures in the previous post, I'm trying to catch up on some postings.  It helped that I found the camera with the SD card I needed.

I've already been at this coffee shop for 1.5 hours just trying to clean up my email and look things up because I'm so behind!  I have a challenge and I'm finding it really hard to do.  When you hear what it is, some of you will understand as you do the same thing and others will think "that's easy, what's the problem?"

I was not in a good place spiritually/emotionally the last couple of months. I just felt depressed and out of sorts and feeling like I can't seem to get anything done.  Sometimes I feel like a broken record saying this because I'm sure I've said it before and I'm sure I'll say it in the future.  It's just like last year when I had written on CaringBridge that Jesus says not to worry about tomorrow.  How the heck do you do that! I know - prayer, trust in God.  See- I know the answers, why do I even ask the questions?  Maybe affirmation, maybe someone else needs to hear it. I don't know, I just feel compelled to write it.

As I was saying, not in a good place. I don't think Joel or the girls really notice when I'm like that but I sure do. The icing on the cake of misery was finding out a co-worker and his wife are having twins due mid-May, making the timeline similar to Faith and Chloe. I was really glad that a couple of people came and told me before everyone else got the word.  My face just crumbled and so many emotions and thoughts overwhelmed me. "Why do they get to have twins? What did I do wrong?  I can't handle hearing all about everything?" It was just a bad day - and when I told Joel, he said "so what?" MEN!

I made an appointment with my counselor to meet with her and work through what was going on.  She listened to what was happening. Then she asks if I've been writing in my journal, no I have not been.  Why? I don't have time. I use my night reading time to read insurance books for a test I'm taking at the end of November- boring.  Then she asked about my Fridays, I'm suppose to use Friday as "me" time, to read a book, see a movie, crafting, whatever makes me happy and gives me a sense of peace.  We had agreed to do that a year ago because I would keep feeling overwhelmed by the simplest things.   I am not to use the time to go all around town trying to find green sweatpants for Joel's Halloween costume which I did one Friday to help Joel out, he didn't ask me to do it. Nor am I to clean the house or do laundry.  HOW...DO...I...NOT...DO...THOSE...THINGS!!! Like right now, I shouldn't be blogging because I don't really want to be blogging but I don't want to get way behind in what's happening in our life.  I do get a good feeling when the laundry is clean and put away and the house is clean.  Then I feel like I can spend the weekend doing family things or giving Joel time to work on the house while the girls and I play and do art projects.  But what happens is I feel down and unable to do anything.  It will take me an hour to get ready to do something or the worst is when I can't even put a meal together, I really want to but I can't seem to wrap my brain around what it takes to get that done.  I just can't function properly.  I don't know if I can explain it clearly.  My counselor pointed out to me that I don't think I'm important enough to myself to write in my journal or take "me" time. But I have to please my family and friends and whoever asks me to do whatever.  This should be easy, to do what I want, but I'm finding it very hard.  I took Halloween off because day care was having an afternoon party, then Joel's department was having trick or treating for kids.  I failed on "me" time that day.  I can't remember what I did but I remember I wrote in my journal "Failure." Yes, I'm writing again so that's a good thing.  Last Friday I maybe did half and half but I still didn't feel like I did much for myself.  I think it's because the "me" items were small and didn't take much time.

I will keep trying, putting it in my head that I need to do things that I really enjoy, so I don't feel dragged down.  Sometimes I wonder if I switched my Monday and Friday if that would help me because then I would still be trying to clean and do laundry on Saturday and Sunday. Or would I think "I have Monday for that."

At least I don't feel as down as I did and I'm feeling more like my pre-tragedy self.  Life is moving on. I have the greatest comfort knowing Faith is in a wonderful place and I don't need to worry about her. I know I'll have the down days but I'll take them in stride. The other day I was at a business lunch at a table of 8 where 2 other people have twins. Ugh.  It was okay though. It's no one's fault that they have twins, it happens. It's not my fault that Faith and Chloe had TTTS, it happens for whatever reason no one has figured out yet. 

I think my co-worker was avoiding me because it's a sensitive subject.  One day I went up to him and told him if his wife needs to see a special maternal fetal doctor, I know of the perfect one.  We were really blessed with this doctor, he did all the right things for us. I am so grateful. I've read other TTTS stories where the doctor just tells the couple they should abort one for the best survival of the other or they say neither will live and to abort both. Or the doctor doesn't know about TTTS and it goes undiagnosed, those cases rarely have both babies surviving.  Our doctor's objective was to fight for both girls, no other option.  Well, he did say we have the right to do nothing - no way!

 

In other news, next Friday is Chloe's first RSV shot. I need to call the pharmacy because they have not contacted me for approval like they said they would and I'm afraid the doctor's office won't have the shot in when we get there.  Monday the 12th is her 18 month assessment. I hope it doesn't last 3 hours like last time.  This time it's in the office and not in the Health Department Annex which will have bigger rooms.  I've also noticed Chloe likes getting into the girly things like her sister does. She loves the dress up shoes, purses, rings, babies.  It's too cute.

Kylie is doing well. She still misses her old day care. That closed end of January this year but she had a great bond with a couple of girls there.  She did do a play date with one of the girls a couple of weeks ago. The best part was her old teacher watches this girl so it was hitting two birds with one stone.  She didn't want to leave when I picked her up. She also has said that to me all week when I pick her up at day care.  She says I'm early and I tell her I'm actually later than I should be.  Kids.

 

 

I'm done, hopefully everything is up to date now.  Below are some pictures of the redone family room.  This use to have dark red walls. I like this better, so much lighter!

 

 

Halloween Pics and Others

Sisterly Love!

Trick or Treat time!

"What did I get?"

Eating Jell-O

Friends!

Sweet Girl!

Mommy and Chloe

Chloe sleep eating. We know she will do this if we feed her after 12:30