have you found the new blog?

Have you found my new blog yet?

There's a new post and another one coming tomorrow.  Make sure and "follow" me over there so you can continue getting my blog updates!

You can also LIKE my new page on Facebook!

come EMBRACE my NEW blog!

I have a brand spankin' new blog!

Come check it out!




I've migrated all my previous posts over and of course there is a brand new one introducing the new site.

I have a brand new URL, so you'll need "Follow" me over there and update your RSS feed if you use a Reader.

Can't wait to hear what you think!






*I've disabled comments here.  Come comment on the new site*

pardon my absence...

First of all, summer is kicking my butt!  The kids have so much energy and are constantly wanting to do something new or different.  And Lily at 2 and a half wants to do whatever her big sisters are doing.  And she needs supervision most of the time.

My kids are also eating a TON!  We send snacks and lunch to Grandma's house and today they ate all the food we sent, plus a bunch of her food.  And they are only 7, 4 and 2.  And they are girls.  I can't imagine if they were boys, who typically are said to eat more.  I'm going to try a few recipes this weekend for homemade energy bits and fiber bars.

Secondly, Bean and I are doing Insanity.  Today was Day 9.  Of 63.  There's one rest day per week, and one day of Yoga, but it's pretty intense.  Insane if you will.  Most days we workout right after work, before dinner.  In the backyard with the laptop because the fresh air (even though it's hot) and the space is much nicer than our small, stuffy living room.

These workouts kill me.  In a good way.  But still, they kill me.  By the time we get through dinner and getting the kids to bed, I am toast--physically and mentally.  My brain power for blogging is mush.

Thirdly, I have a new blog in the works!  Like with my own url and everything.  Which is connected to the mush in my brain right now.  The design is there, thanks to my friend Liz.  But I still have a lot to do on my end.  But, the mush.

My goal is to launch it by August 1st. But in the meantime, when I do have brainpower, I'm going to put it towards the new blog.

So, there is a reason behind my absence.  But you can always find me here and a little bit here too.

a good morning!

Another quick update:

Lily woke up with a normal temperature today!  This is the first time her temp has been normal (98.6 or below) since this all started last Monday.  And we didn't need to give her any medication during the night.  I'm really hoping her fever doesn't return this afternoon.

My awesome doctor's office called again and my Pediatrician consulted with the Immunologist and the Immunologist feels that Lily has Periodic Fever Syndrome, which my doctor has mentioned before also.  My nephew was also diagnosed with this syndrome, although the removal of his tonsils (which coincided with his 3rd birthday) significantly decreased his fevers. 

I'm still going to keep an eye on Lily's joints and will ask the Immunologist about it as well.  We will get to see him late next week now, instead of August.

Most of all, I was thrilled that she didn't have an elevated temperature this morning.  I feel like my other girls have been neglected a bit through all of this and I'm hoping for a couple of fun days with them all when I'm off the next two days.  We're gonna hit the beach!

the latest on Lily (calling all medical sleuths)

I wish I could say she was back to normal, or that we've figured out what's going on.

But she isn't, and we haven't.

My pediatricians office considers a temperature of 101 or higher a fever.  Lily's temperature seems to spike to a fever later in the afternoon.  Her temperature has not been below 99 since we came home from the hospital.  Monday it spiked to 102.6 and this afternoon it was 101.4.

I talk to the nurse at the doctor's office daily.  They are trying to get us an earlier appointment with the immunologist.  Our current appointment is at the end of August.

Lily has continued to complain about pain in her legs.  The antibiotic shots she received two days in a row last week are quite painful, but usually that pain dissipates after 72-hours, and that was the case when she had the shots last month.  It seems that her joints might be bothering her.  This morning she didn't want to step up a curb, saying that her legs hurt.

Joint pain and the fatigue she still has and the fevers could point to a juvenile arthritis.  I'm still trying to determine where the pain is from and how present it is.  Lily was very opposed to me touching and flexing her leg joints when I told her what I was doing.  I'm experimenting with manipulating her legs without warning to see her reaction.  A few times she has withdrawn from me but once she didn't have much of a reaction.

If you love a good medical mystery, feel free to Google my kid and give me suggestions of what to check for or consider!  Anything is game at this point.

While I'm not overly worried, I am concerned and very frustrated.  It's also challenging because Lily is very fussy at times and wakes up with an elevated temperature at least once a night.  I want my happy, playful baby back.

I am thankful serious things like leukemia have been ruled out, so I'm not letting my mind get away from me, but it has to be something.

this is the fever that never ends

If you follow me on Twitter, you know that it's been quite the week for us.  I shared this sad photo on Wednesday.  It was a rough week for our Lily-bug.

Monday (July 4) she woke up from her nap a little out of it and fussy.  By 4:30 we realized she had a fever.    After last month's episode, I knew she needed a doctor visit immediately.  We went for bloodwork first on Tuesday morning and then visited the doctor on Tuesday afternoon with the results.  Once again, her white count and CRP were elevated.  Poor munchkin had to get antibiotic shots again.  (click to read about my crazy Tuesday)

Wednesday afternoon, her fever was still raging, so we went back for more shots.  As soon as I tell Lily we are going to the doctor or when she recognizes the landmarks as we drive, she says "all better, no doctor" in the saddest, sickest voice.  And Thursday, fever still there.  We paid a lot of co-pays this week.  The doctor said if Lily's fever went up to 101 on Friday, he would admit her to the hospital.

So, guess where we ended up on Friday evening?

She actually looks happy here.  Which was obviously before the IV.  When a fever-reducer was in effect in her body, she was pleasant and would even play some.  But once her fever kicked up, she was one sick little girl.

It was an intense 24 hours.  I have such a new respect and understanding for parents of chronically ill children who spend a lot of time in the hospital.  At times I felt like I was in a different country. Everything was focused on Lily's health.

They did a pretty full work-up on her including an x-ray and ultrasound.  Thankfully, they didn't find anything serious going on, which was our biggest concern.  Lily was pretty dehydrated, so being on an IV for 24 hours was a very positive thing.  Her urine output had been very little and the IV increased it dramatically, which helped with the fever.

Unfortunately, they weren't able to identify the source of the fever and since it stayed low while we were there, they felt good discharging her.  Since she had improved and actual sleep and rest in a hospital is difficult, we were comfortable with that.  Her temperature has stayed 1-2 degrees above normal, but overall she is improving.

We will be seeing an immunologist to follow-up and hopefully figure out why Lily has these frequent fevers and if they are infections or viruses or another cause.  Right now I'm focusing on the fact that she is improving and even though this is the 7th day of her fever, it is very low and decreasing.  It is concerning to me that she has had 15 fevers in 13 months.

I am very happy that Lily is in her own bed tonight (and keeps calling us for silly things tonight) instead of in a hospital bed.  Although she actually was never in the hospital bed because it was a crib that she wanted nothing to do with.  She spent her time in the fold out bed if she wasn't in my lap.

More pictures tomorrow and things I learned being in the hospital with my daughter.

Wordless Wednesday: sick, sick, sick

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