boy names...

we are so taking ideas on boy names!

we like:

-single syllable names, but names we can shorten work too.
-non-exotic (no justineal-llo or shufunkwas)
-family names
-something that goes with Matthew being the first name, and him going by his middle name...but we're not opposed to other ideas as well.
-names with great meaning or after great men
-old school names (you know---like Claire is an old school name)

we don't like:

-names with a past ("i knew a kid with that name and he used to put boggers in my hair!"---we won't be using those ;)
-if someone in the family already has the name that is within two generations, we probably won't use it. ie---my FAV name is Daniel, but he has an Uncle Daniel.

Some ideas we have:

Matthew Gideon:
I love the idea my brother Tim had: Gideon is a family name, but they would call him Eon (Ian). I think that's AWESOME! Nick does not agree.

Matthew Jacob:
I love the name Jacob and call him Jake, but Nick doesn't like Jacob.

Matthew Taylor:
Nick loves Taylor, but I don't love that it is a unisex name and more popularly a girl name, right now.

Matthew Bradley:
Just not sold on it yet.


We are LOST! We have so many ideas, but none both of us agree on. Help us!

princesses...

One of my students (Kiki) won her 'natural' beauty pageant. She wanted to show me the crown. I think Claire was more impressed than I was.

fungus...

Claire's mouth started to bleed...a lot. Took her to dentist and doc. They said it was thrush ( you know, fungus in you mouth). Apparently you only get it if you are immune compromised or an infant. I am considered immune compromised because I'm prego and Claire is because of the steroids. We both got it, but Claire's is worse. It got to the point that when she would move her mouth at all, it would bleed. Her gums still bleed when anything touches them. I can't brush them without making them bleed. It's horrible.

she is doing alright, though. She's eating better now that she's been on the thrush meds for a few days. What a relief! yucky, yucky stuff. She is sure a trooper.

from marlies, melissa, tim and jill...

We have had so much love from our families and friends. Recently, my sister Marlies and my "sister" Melissa, my brother Tim and his wife (and my sis) Jill took it upon themselves to send a package. This is of her opening it:




Marlies had this one all set up: A suitcase full of princess fru-fru ( you know I love that stuff), 'snacks' (fruit snacks), 'fishy-s' (goldfish crackers), tu-tus, sippers (sippy cups), books and a princess blanket. So that it's ready for when she goes to the doc next. ;)





Apparently, it's more important to feed yourself instead of your babies.









'chap-it' (chapstick)
I think this was her fav







Obviously, we feel loved. And maybe a little overwhelmed by pink/princesses!
She now asks for her "ah-ree-ahl" books (Ariel) daily.

photo catch up 2...

Learning to climb:









cute new outfit from Grandma Carol






my first ant sighting...tragic for mom that it's in the BATHROOM next to the TOILET!

catch up on photos...

we have lost our camera, so Nick's phone has been the only camera we've had for a while. I have the ability to take pictures and TODAY found out how to download them. So, here's a catch up:

Leaf 1

Leaf 2

Leaf 3: we were waiting for Daddy to finish work, so we went up to campus and played in the leaves!

I want the whole cup, not a sip from the cup!

I am an artist. A left handed artist!
Claire started wanting to draw at about 13 months.

I like to pretend I'm a baby, so I steal Mile's sucker (AKA binky)

Momma's and my shadows 10.17.2009

glucose...

I had my glucose test today...blech. that drink is absolutely disgusting!

Claire was pretty upset with the lady that poked me, but she decided she'd settle for saying 'owie' over and over instead of screaming. I was glad to show her that it's not only her that gets poked with needles.

When we were waiting for the doc, Claire looked up to a pic on the wall and said, "Gee-sahs?" Yeah, not even close. It was a farm house or something like that. I said to her, "No, not Jesus." She looked up at me with her big blue eyes and said, "Work?" I always tell her when she wakes up and asks for Daddy that he's at work. I love that she made the connection to Jesus. We talked about Him being with us all the time, but we can't see Him. I don't think she got it, but she will.

We took Claire off the last step of steroids on Friday. That night, she had a fever of about 103 F. Her fever has been about 101.5-103 F this whole weekend. She doesn't like to walk up/down the stairs and she has me worried sick. She will randomly tell me that something hurts (her knee, her toe, her ankle, , her finger---usually a joint) and makes me kiss it better. We called her doc this morning. I hope to hear back from her soon. She also has canker sores all over her mouth, so eating has been hard for her. She drinks a ton. I don't know if cankers could be related or not. When Nick discovered the cankers, I thought, "oh, she's just been teething! maybe this is what is causing the fever!" I'll hope for this, but I really don't know.

going private...

I have had close to 15 advertisers try to advertise on my blog in the last few weeks. While I have tried a private blog before, it seems more necessary now than it did then. Especially with all of Claire's stats out there for anyone to see.

While I was private, I would have requests left and right for people to be able to view my blog. It only allows 100 people to view it, so I'm setting this up for random people that only want to view it once or twice. For example: if you have a mother in law that loves to share stories with people, but those people don't want a permanent account of view-edge, you can give out this user name and password:

username: sorensenblogopener@gmail.com

password: to be given out to those who want it (just email me or post your email here so I know who wants it)

Then, whenever someone RANDOM wants to view it, you don't have to wait for me to give them permission to view the blog.

FOR EVERYONE ELSE:
if you would like to be on my permanent viewing list, please post your name or your email address in a comment.

Hopefully this solves the problems I was having of keeping the blog private and also the issues of keeping it open! If you have a better suggestion, let me know. I'd be willing to try it.

I will keep the blog 'open' until May 27th (wink wink).

-deb

digging holes with daddy...

Daddy and Claire always have fun together. She picked up rocks and put them in the bucket after Daddy dug them out of the hole. Very helpful, you know...

stats...

Here we go:

CRP: from 28.8 to 37.3 to...... 0.9 (supposed to be below 0.8)
ESR: from 106 to 94 to......... 42 (supposed to be between 1-9)
*Compliments: normal
WBC: from 25 to...... 14 (supposed to be 6-17)
*Hemoglobin: normal
*Platelets: 717,000 (supposed to be 450,000)
*Neutrophil: 41% (supposed to be 33%)

*First time they tested for this level---helps in evaluation for Still's Disease

Doc evaluation: Everything that would be suspect in Still's disease is/was high, but they think it has reacted faster to the drugs than they would have seen if it was Still's. The Platelets and Neutrophil rates are still suggesting that Still's is not completely ruled out yet. We are to watch her and make sure nothing flares back up as we take her off steroids completely. Still won't rule out pseudo blah blah serum sickness (can you tell how I really feel about this one? not that I want it to be Still's, but I can at least look that one up!)

The worrying mother's take:
Could these only be reacting faster to the drugs now? After the second course of drugs has run through her body? I still am lost on what half of this stuff means! Even after I badger the doc and look everything up!

My take:
Yeah, my baby is doing better! She is much more herself these days---but shy-er. I'll take what I can get.

per request...

There hasn't been much to tell, so I haven't wanted to rant and rave on the blog again. *feels little embarrassed* Sorry you all had to listen to me whine. I would delete it, but I believe it good for posterity to show your bad side with the good.

Claire has progressively gotten better with her scratching. Each day the fits became less and less. This morning---nothing. We have been on the phone with doctors everyday. They always want her status report, which makes me feel reassured that we are trying as hard as we can to do the best things as possible.

Wednesday was much the same as Tuesday, but I started to understand her needs for the scratching better. I don't believe that meds do very much for the itching. An hour after I dose her with it, it will still come on. Oh well. Starting to wind down so it doesn't matter.

Yesterday we took her a step down on the dosage of the steroid. She ran a low-grade fever and the rash was present, but it looked a LOT less severe. She still took quite a nap. I was able to convince a good friend from high school to come over and just talk to me. Much needed adult time. Helped a lot.

Today the doc ordered some tests to be done. Claire did NOT enjoy going to the doc, and we tried to prepare her by saying things like: "we have to get an owie today, sis, but it will be over fast!" We brought her a new toy that was sent from our good friends, The Farvers (from JC, Oregon). She liked it in the waiting room, but then screamed bloody murder anyway. She still won't answer what a cow does, where her belly button is, or things that we have used to try and distract her from previous pokes and tests. The blood draw was horrible because they couldn't get the vein to bleed, so they had to move the needle a TON and then restick her and move it again. She was so upset. but, as soon as it was over, she stopped crying and asked for "water". she got a sucker instead. Not something I prefer to give for pain, but she probably needed the sugar.

Later, driving by the hospital, she said, "Owie, C?" She's quite the kid, if you ask me.

they are testing her inflammation levels (ESR and CRP), her compliments (something with the immune system), her liver (a level they need in JRA diagnosis) and her white blood cells. there's something else, but I don't remember. It was interesting to me to notice that they are not checking her ANA, but they don't think she has that type of JRA. Okay, you know better than me, but I would sure have liked to ruled it out.

We'll find out more on Monday.

Some people have asked what pseudo serum sickness is: short answer---I don't know. Long answer---I still don't know. When I tried to look it up, it only brought up serum sickness. This being pseudo serum sickness makes me even MORE confused. I asked the doc that calls me everyday to send me info, she doesn't have any---not very reassuring to me. The rashes they have pics of do not look the same as what claire had.


(not Claire, just googled it)

pseudo start...

Tuesday:

12:16am: Fever check, feels cool or even cold. Cover up better and go back to bed.

2:34am: Claire wakes up screaming. No fever, no anything I can understand. She is scratching majorly. Give Benedryl and put back to bed.

8:45am: get out of shower to screaming. Run towel-naked into her room. No fever.

"old (hold) me, Momma, old me!" I pick her up.
"down, down, down!" I put her down.
This goes on for 20 minutes. She is scratching violently. Still dripping wet and wondering if that is adding to her scratching (you know how water dries and makes you itch sometimes?).

I look at her legs: COVERED in bloodied scratches. Rash is back around her joints (knees and elbows).

Dose her with steroids and Benedryl. She is still screaming. Won't calm down. Won't eat or drink. Thrashes and tries to scratch. Dress her like mummy to prevent scratching. SCREAMING! I can't handle it anymore. Put her in her room and close the door. scared to death and worried I'll smack her cause the screaming won't stop! How could I?! Why do I even think such things!?

Running through my head what might help. Call Nick. Give her bath, hoping to maybe wash away what's making her itch. Call Nick. Rash more noticeable in water. Freaking out. Call Nick. Call original doc. She calms down some. I get her to eat some cereal (bribe her is a better word). After eating, she gets better.

Dress like mummy again. She rolls on the ground, thrashing, trying to scratch. Starts to pull chunks of hair out of head.

45 mins pass since dosing. She calms all the way down and notices my tears. Brings me HER blanket and kisses me, wipes at my tears.

No idea what happened. I think the steroids are really strong and they wear off between doses. Doc also told me that the steroids themselves can cause psychosis. People literally see things and feel things on their skin. So would giving her another dose cause her to calm???

Am literally emotionally exhausted. Don't know what to do. Is this pseudo serum sickness the right answer????? Called doc from Primary's. The only other thought might be Still's disease. Which they would treat with the same medicine. Scares me too, cause it's still an autoimmune disease. Doc said rash is different from typical rash that indicates Still's, though. Everything else fits that I can find.

Nick comes home with lunch. I'm at wit's end. He puts me to bed and turns on movie for Claire. She comes wandering up about 10 minutes later. Finds Momma and says, "Up, bed? Momma seep-in (sleeping)?" She falls asleep next to me for about 45 mins. Now she's asleep and I'm here. Tearing my hear out.

Sorry this blog has become my sanity. I vent here so I don't do something stupid.

the return...

well, last week---Wednesday to be exact, I notice:

a rash.

On Claire.

Not a huge deal, rashes happen, right? I watch it. It's different from last time. In her diaper area...again. But it made her poor butt bleed. eesh! Well, Nick reminds me to mention this to the doc for her post hospital check up which is the next day: Thursday.

Thursday:

2am: Claire wakes up screaming. Comfort and put back to bed.

8am: Claire wakes up, feed her, put her in bath.........................................AGGHHHH!
Rash has spread. All over torso. Different still from last time (huge red sheet). This is more splotchy. Fever, low but there. Well, we're already going to doc. Good.

10:30am: Doc says looks like viral rash. Probably from being on steroids. Wrecks havoc on immune system. Became weaker and allowed whatever virus that was not touching her to rear ugly head. Watch it and call with questions or concerns.

Friday:

8am: Claire is up and practicing getting in and out of big girl bed, so she won't fall out again. I'm on the phone with Krista (MIL) and we're talking about how big Claire is getting. She mentions that she's concerned about the rash...am I? Nah. It'll be okay. But I look just to be sure.

"uhhh...it's back, Krista." that's right. Rash has mutated into smaller version of last time. Spots aren't as huge, but still big red sheet sizes of hand and smaller instead of whole body. "Go park on the doc's doorstep, deb", Krista tells me. Obviously very concerned. I call Nick and we decide to call doc, because he said we could.

Doc tells me to go to dermatologist.

10:10am: Dermatologist fit me in because doc made them. Ohhh...she probably just got off steroids too soon. Here is a dose. Use for three weeks (horrible for kids, by the way. They NEED their immune systems, which steriods weaken).

Bed time: Claire is exhausted, she has a small fever. Give her IB Proffen and put to bed (after brushing teeth, of course).

Sat:
2:30am: Claire wakes up screaming. She's is BURNING up. I swear it was like she had a temp of 107 F or something. Pass her screaming off to Nick, grab IB Proffen and thermometer. Took it like fourteen times, said different things each time: 103+ Rash all over body.

Call Doc. Use Tylenol and IB Proffen in rotation every three hours.

Fever calms down to 102 F

Drug her up all day Sat, didn't want to walk or crawl several times all day. Wouldn't eat much, drank some. Way fussy. Grampa Matt and Uncle Greg were here with us to help with fence raising. Not a whole lot of fun to be around Claire, poor guys.

This is following WAY too close to two weeks ago. Exact pattern, same symptoms, scaring me to death. AGH!

8pm: Claire is fussier and has higher fever. We forgot to give her her 6pm dose---which does not make me feel better. She's not getting better, we're just masking her symptoms.

8:30pm: Put Claire down, drugged up and delirious.

11:30pm: Dose, fever check 103 F

Sunday:

2:00isham: Dose, fever check 102 F

5:00isham: Dose, fever check 101 F

8:00isham: Dose, fever check 101 F, not walking, drinking or eating.

Call Doc: not sure what to do besides admit her and look more closely. Call us back in a bit.

Give Claire a bath, try and feed her, pack for hospital. She eats ENTIRE BOWL of cereal, starts to crawl a bit, drinks, happy.

Doc calls back:

me: she's doing okay now...?
Doc: if she gets worse, take her to this clinic that's open Sundays and ask to see a guy named Doc Shcnider.

10am: Claire and Dad are exhausted. Put Dad down for a nap and Claire decides she wants to stay with Daddy. In bed with Dad (she's NEVER done this, not even as an infant---cutest thing I've ever seen) for a THREEPOINTFIVE HOUR NAP!

1:30pm: Claire starts to talk, so I know she's awake. I go in to grab her and Nick is ready to get up too. Claire won't drink, feels hot and won't walk. Decide to give her another bath, because we think that's what made the difference this morning. Nope, screamed the whole bath long. Still won't walk, drink, eat.

2:30pm with Doc Schnider:
Take her to Primary Children's Hospital. Doc Bohnsac will be paged, he's a rhumatoidist (or whatever). Could possibly be JRA (Juvenile Rheumatoid Arthritis) or something in that family. Uhhhh...did you just say an autoimmune disease????!

6:00pm with three docs at Primary Children's:

All agree it is pseudo serum sickness.

Her blood levels were checked:
37.3 CPR
96 ESR (is that right)
35 White Blood Count

All higher than the first hospital visit.

Treat with steroids (3x the dose that Logan prescribed)

Monday: Went back to specialist, still thinks the same thing.

Hate this diagnosis. Don't agree. How on EARTH could she have contracted it?