No more fever

On the 8th night, Tay's fever broke. FINALLY. That was a long time for such a fever.

We met with a doctor that specializes in Immunology this morning. Following our appointment (filled with medical history), we went to the lab for more blood work. As soon as we pulled into the driveway at the lab, the meltdown of all meltdowns ensued. Who can blame her though?

We won't have any results until our follow up appointment on September 17th. Until then, we have prednisone to give her at the first register of the next fever. They're usually six weeks apart though, so I kind of doubt she'll have another before then. We'll see.

For now, it's back to normal, back to school on Wednesday - she's missed 4 days, and off to the beach this weekend. Please don't rain, please don't rain, please don't rain!

It's NOT the ears. Fever, day 8

Low grade...99.8! I don't even consider that a fever :) I have not given her Motrin or Tylenol all day. I thought I'd give her body a break from the Motrin since her fever is so low.

We went to our appointment with the ENT this afternoon. He did a full work up on her ears. Checked her hearing again, took pictures of behind the ear drum and decided that the tubes could come out. They were sitting in the ear canal, not doing any good any longer. He said with the average kid, they could sit there and cause no problems until they fall out, but beings she's having some mysterious issues, he wanted to take them out. There is no fluid to be found anywhere in her ears. He said that there is no possibility that the inflammation is coming from her ears.
Now, could her ear infections reoccur? Yes, but hopefully she's grown out of that. If they do start to come back, we can get back in and get a new set of tubes. Only problem is, in about 8 days, he'll no longer be accepting our insurance. So...let's hope we're done with ENT's for good!

My pediatrician finally returned my call. Now I feel kind of bad. I've been annoyed that I had not received a return call since yesteday afternoon, because I've been wanting to speak with her about Tay's tummy. Of course, she called back at 5:30 tonight and could not reach me on my cell phone, because I left it in the car while we went to dinner. Damn. So, she left a lengthy message on our home machine.
She got some more blood work back and there are some questionable markers. So, she conferred with the Infectious Disease Specialist today...faxing him Tay's records and labs and he's referred us to an immunologist. We meet with the Immune. on Monday morning. The ID thinks he knows what she may have...but again, no need in expressing that until we have confirmation.
Needless to say, she's probably going to have more blood work drawn. They're going to culture her entire immune system.

Your prayers and calls have been wonderful. They really mean a lot to us. Thanks for the offers of dinners, childcare and accompanyment to our appointments. Thank YOU for the love and support you give to our family :)

Fever Update

Still has a fever. Puked today. Not sure why, or if they're related. She puked once Sunday night. Who knows?

Went to have blood work read. No signs of infection. Which we already knew. High count of platelettes show that there is an inflammation somewhere. Determining where is like a needle in a hay stack. But it is very important that the source is located.
There is some noticeable bacteria around her tube in her right ear. So, we go to the ENT for possible extraction of that tomorrow. They will culture it. That is not the cause of this fever though, as there is no sign of bacterial infection. That is unrelated, but needs to be addressed.

We went back to the lab...that is her third blood-draw this week, in addition to her IV line. Needless to say, she's over "shots". (and I took her to the Disney Store to let her pick out ANYTHING that she wanted. Nothing like buying her happiness!) I digress. They're testing for a few new things...that could also help hone in on the inflammation. No reason to get into all they are and have been testing for, unless anything comes up positive.

I had an 'ah-ha' moment today while going through her files at home...reading her medical history looking for any clue as to what could be going on. After her intestinal surgery in 2006, her surgeon said that should she ever have a fever and/or vomiting for longer than 72 hours, to let somebody know that she had a surgical correction for malrotation and also has repositioning of her digestive/intestinal tract. That there was a possibility for inflammed scar tissue, build up, etc. And also, she has a hernia in her stomach...I wonder if that could be inflammed?
I focused on the stomach today while looking through her charts because for the first time in almost a week, she's complaining of pain/discomfort. Stomach aches.

What else have I learned in the last couple of days? There is No such thing as recurring Mystery Fever. That was my diagnosis! Although there is a disease where fevers happen with no explanation. They are genetic, as they're a result of a defective genetic marker, predominantly in mid-eastern decent. And are outgrown, often times. That make up doesn't really pertain to us, in my opinion.
So, they need to find the cause of these fevers. As Taylor put it so well today "My FAYVERRRRs not going away Mommy. I'm done Sick. Go away FAYVERRRR".

Here's a little-known fact. To service ALL of Arizona...there is only ONE team of Pediatric Infectious Disease Specialists. They don't have an office, and will only consult a patient in person if they are admitted to the hospital. Otherwise, they manage primarily in phone consults. Hence the reason the Dr wanted us to be admitted Tuesday night. Our insurance won't cover an admittance without due reason. A (almost) 106 fever is reason. She's down to mid-101's and those are not. Hmpf.

The Mystery Fever Blues

You always know when things seem to flow so smoothly, that the other shoe will drop. It's inevitable. At least in my world.
I try to maintain optimism and a positive perspective in my life, and allow myself the days to give in to my inner cloud, when I need to.

Today is that day.

Taylor's years long mystery fever's most recent breakout is completing it's full 6th day. That's a long time for a mystery fever. It averages between 103 and 105, however, last night, it topped out at 105.8. After a call into the pediatrician, she had me take her to the BCMC ER. At risk of seizing and/or convulsions, she needed to know what's going on.

Earlier that day, Tuesday, we went to the lab to complete bloodwork, an x-ray and an MRI. The doctor ordered them on Monday, and we have a follow up on Thursday to go over the results. It's similar to a panel she ran last year, but it has a few more obscure illnesses included, too. But she also wanted some of the more basic blood work re-run that night, as to find out the results quicker.

What did the ER visit last night teach us, other than a realm of aggravation from being understaffed and over-patiented? That Taylor does not have an infection anywhere in her body. Disappointing and discouraging. And even though I knew it was going to come back like that, because her strep, urinary tract and ears all checked out well on Monday, I was still hopeful that the pediatrician missed something.

We left there this morning as the sun was getting ready to peak over the Superstitions. The roads were quiet, and I was alone with my thoughts and the sound of her sucking on her fingers in the backseat.
This poor little girl. She's never been perfectly healthy. *I am so grateful that we do not deal with life threatening illnesses, and everything that we have faced has been treatable in one way or another.* But seriously. I couldn't help but feel 'Why her'? 'Why us'?

I am emotional and exhausted. I was up for over 24 hours. I slept for about 3 1/2 hours today. But as I lay in bed tonight with a million and one thoughts running through my mind, worry and tears overcame me. I figured getting them out may be what I need to give my anxiety to God and let my heart relax.

I think that only a mother can understand this empty, flailing, despairing feeling that I am. I cannot understand why our kids have such struggles. It's not fair. And just when things were really starting to flow with her. I just don't get it. But I do know that I have to wake up tomorrow, refreshed and optimistic. We go to the find out if there are any results from the extensive blood panel and tests done yesterday. No matter the results, we will move on to a specialist. They will just determine what kind. Tomorrow we pick up and move forward. Something I have become very good at. Willingly or not.

That's it. That's the extent of my POOR ME's. I'm entitled. You'd have them too.

**Side note: Bubba called while I waited three hours for a return call from the Dr last night to give me tips to try and bring Tay's fever down. It was 105.8 in the middle of the Motrin/Tylenol cycle. If you have little kids, take this tip. It worked really well and the hospital said that was exactly the thing to do. Thanks Bub..I love you! But you already know that :)
Anyhow...DO NOT put a child in a cool bath. It could send them into shock and make them seize. Pack their under arms, sides of the neck around the carotid artery, and the groin with cool cloths. It literally continually dropped her temperature to 101.3 in about an hour.

Sanborn Spirit

Washing Machines REALLY DO eat socks

I repeat, washing machines really do eat socks!

Since we cannot keep an even number of socks in any size, I decided to conduct an experiment. Call it Mommy with two kids at a school and no job to keep me busy in the day yet!

I went and bought the girls a new pack of socks each. I wrote their initials on each sock. (I have to do this anyway, now that they share a dresser, so that I don't mix which socks go in what drawer). I also put a colored dot on each set. I had 12 sets and 6 colors.
So, I did a load of laundry...a small load. Only the girls underwear and socks. From the washer...I stuffed everything into the dryer making sure I didn't drop anything.
And tonight, when I took my load out of the dryer and was folding....low and behold ONE SOCK is missing! The white sock with a purple dot. One. Gone.

So, the myth is true...the washer does eat socks. And now I must go back to separating socks into lingerie bags...AND quit accusing my girls of losing them!

Saaaay PEANUT BUTTER!

Dr. Montes, Taylor's GI, suspected that Taylor might have grown out of her EE (aka EoE). At least with the foods she's been eating. Her last scope in April 2008 showed no cells. So 16 months later, he decided he wants to do another. We were so lucky to get in, a day later, for an endoscopy to biopsy her espoghagus and see if there were any cells.

And of course, we're even more lucky that the cells are still G-O-N-E!!! That means that she's having no internal reaction to any of the foods that she's been eating.

His big concern is her weight, of course. She gains so little over such a long time. And they desperately want her to put on some pounds.

The results of a negative biopsy equalled an introduction to Peanut Butter! Initially, he was going to start her on egg whites. But since she recently had a run in with PB and had no adverse reaction, he decided to start her on that. He consulted with her allergist before calling me, and they both decided peanut butter is a good place to start! PB is a great source of protein and FAT. And she needs all the fat she can get right now. (I'm sure she'll be swearing at me in 20 years when she's fighting to get the fat off! teehee)

SO. One week into it, and she's showing no negative response from the PB. Her favorite sammy is a PB&J. *It was previously soynut butter and jelly* She asks for a PB&J at least twice a day! And I'm giving them to her. They told me to let her eat and eat and eat. So I AM! She is eating PB&J's with dried plums...aka Prunes! I don't want all that bread and nutty goodness causing her any other problems, so I decided to problem shoot before any began ;)

Needless to say, this has opened the door for a lot more choices for her. If all continues to go well this week, then next Monday it will be on to egg whites, and two weeks later, eggs! Imagine that. She will be able to eat a REAL PEANUT BUTTER COOKIE!!!!

Beauty and the Beast

Pam bucked a traditional gift and opted for a cultural one this year for Hayden's birthday. And boy, did she score!

She purchased front row seats to Beauty and the Beast at the Hale Theater in Gilbert. She asked my mom and I if we'd like to get tickets too and join them and make it a big girls day, a couple of weeks before her birthday. We had so much fun. And so did Hayden. Which of course, is the most important of all!

This theater is a great place to see a show. We were practically on the stage with the actors, as it's arranged 'in the round'.

The show was great! Hayden sat between my mom and sister quietly, and very enthralled. Afterwards, she was able to have her picture taken with Belle. We also got a picture of her sitting on 'Papa's' invention that was back behind the stage on our way out.

We ended the day with a yummy sweet treat at DQ. What a very special girls day. She's a very lucky six year old!

So blessed!

I am so blessed that I have these two amazing, caring, compassionate, talented women at my fingertips! They are my sense of center. When I seem to be struggling or down. Overwhelmed or aggravated. Excited or anxious. They seem to always know when to call. What to say. Or even what not to say.

There are times that I feel I can't win battles with everyone or everything, they love me. For ME. They support and respect my opinions and decisions, whether they may agree with me or not.

They don't sweat the small stuff. They are not judgemental. They are accepting. They make me laugh, and smile, and cry. Even when they may not understand what I may be thinking, or what may be going on around me, they're there. They are a part of me. A part of what makes me, me. And I am so blessed.

Hayd's (3 week) progress report!

"Hayden is doing a wonderful job in class. She is consistently playing with the other children during our play times. She is very outgoing in the classroom as well. When her shoe needs to be tied or if she needs help with any clothing items she doesn't hesitate to come ask me to help her out. She does occasionally need some extra help to stay on task while doing her work (reminders about what to do). But that isn't very often at all!! And at this time of the year I fully expect that with any kindergartner!"

Tay's (3 week) progress report!

Most days that I pick Taylor up, her teacher has a report for me. "She was really quiet today". "She was only sad for 2 minutes and then perked right up". "She's making friends wonderfully". Monday she said that Taylor "just chatted away during storytime. Something about "Boom Boom Pows". Great! She's now teaching the class about Black Eyed Peas. And I'm not speaking about legumes! She wasn't complaining about Taylor's chattiness...she said that she likes to hear the kids verbalize and use their language skills. Especially children like Taylor who have language delays. Monday night though, while we were reading, I realized that Tay does talk through an entire story. Guess we usually tune it out! So we did talk to her about when to be quiet and when it's okay to talk.

When I went to pick her up today, Mrs. Pollack told me that I need to clone this child. Funny, with all the hoops we've jumped through since her birth, cloning her has never come to mind! It was reported to me that she insisted on cleaning up the classroom. The whole classroom. Including dusting! And even though she wasn't on clean-up duty today, she relieved the little boy who was from his duties. Mrs. Pollack told her to save some of that energy for her bedroom. But quite honestly, their room is eternally picked up, since they got their bunk beds!

I was also informed that during puppet time, she asked the kids what type of puppets she was holding. Expecting the answers to be a puppy and a bear. Taylor raised her hand and answered with a Dalmation and a Grizzly! She joked that Taylor's done passed her lesson plan for the year, so they're moving her to Kindergarten! LOL.

She said she spells her name whenever one of the aides is going to write it. TAY. (The LOR can come later ;) ) AND she can count to 23, only leaving out 2 numbers. Who knew?!?! When we were in Target today, she was counting 1, 2, 17, 49, 6,8. So I would've never guessed she could sequence up to 23! She's a stinker!

But she's my stinker and I'm very proud of her!

Taylor's three year and four months stats

Weight: 27.3 pounds

Height: 39 inches

Shoe Size: 8 1/2

Shirt size: 3 to 4

Shorts size: 12-18 months

Pant size: altered 3T (for length)

Hair: Blonde

Eyes: very, very Blue!

Hayden's 6 year stats!

Weight: 42 pounds

Height: 49 inches

Shoe Size: 12

Shirt Size: 7/8 girls

Shorts/Pant Size: 6x

Hair: Blonde

Eyes: Blue

Starry Safari

Luck would have it that we chose the nicest night of the Summer to take the kids to Starry Safari at the zoo. From 6:00 to 9:00pm, for just $4 a person, you are free to roam the zoo, play on some jump-jumps and frolic in the splash pad. Hayden thanked us for having "I think this is what they call a family night. Right?!" Little does she realize, we have family nights and days all the time. She's just used to those!

There was such a nice breeze out, and it was only 97 when we got there. It wasn't crowded at all and the animals were in rare form! Loud and active...even the snakes were moving around in their house...(So I was told...I couldn't bring myself to look)!

Hayden, imitating the lions since I couldn't get a good picture!Checking out the leopards!Photo by Hayden...maybe she should go into business? Okay, maybe not!Looking for the coyotesWhat a beautiful full moon! I let the girls dress themselves and do their own hair. They don't usually look like ragamuffins!

Listen Up, Little Miss...

Pam is so tolerant. She was letting the kids feel Paisley moving. They couldn't get a good kick, so she layed on the floor and helped them feel around. Hayden got such a kick out of it! She was talking to her and telling her all kinds of funny stuff.

I thought quick enough to get my camera, but I didn't get the chance to get down there and give her a piece of my mind. My message would sound something like...

"Listen up, little Miss. Enough is enough! You're considered full term to most doctors, so can you puleeeeze come out now because I need to STOP EATING!"!!!!!!!!!!!

I am so supportive of my preggers sister, Always! I don't think she should have to eat sweet treats and snacks all by herself. Eating by yourself is lonely ;) So, I'm there for support! Three years ago I walked miles and miles and miles with Pam in the hot August heat trying to work off my own baby weight, just to end up at Cold Stone. This time, I'm just driving her around and noshing on chicken salad and cookies, and once again, I'm working off my baby weight. From THREE YEARS ago!!

Ohhh Tay.

Ya know, I was telling my mom the other day, that I think Tay's gonna keep us on our toes. That I'm going to have to stay one step ahead of her. ALWAYS.

Ya think??

Hellllllllp me!!!!

Hayden's 6th Birthday Celebration(s)!!

The birthday girl celebrated her very first school birthday. Who'd have ever thought that in July you would have a school birthday?

The classmates in her cluster: Ronnie, Lauren, Hayden and Maddy
As usual, we let her pick out what she wanted for her birthday dinner. This year, she bucked tradition and strayed from Red Robin. (phew!) She chose Oregano's!

Cash helping her with her pazookie. These two take the prize for the messiest kids in the family!We gave her gift to her on her birthday. She was thrilled to get a Minnie Mouse watch!

The much anticipated Build-A-Bear party!And lastly, presents and ice cream cake back at our house with her extended family!

Interview with a SIX year old!

I made up some questions and sat down with Hayden to interview my new six year old. Much to my extreme delight, she answered most all of them on target!

* What is your favorite color? - Pink!
* How many pets do you have? - Two. Maycie and Daphers, they are dogs.
* What is your favorite breakfast? - Daddy's chocolate chip pancakes with syrup!
* If you could pick anywhere you wanted to go on vacation, where would you go? - DISNEYLAND!!!
* What is your favorite song? - Taylor Swift. Any song by Taylor Swift.
* What is your teachers name? - Mrs. DeHart
* Have you ever been on an airplane? - Yes. (we counted together) 4 round trips
* What is your favorite dinner? - Pasta!
* What do you enjoy most about school, so far? - Listening to "Good Morning, Sanborn" announcements in the morning.
* What is your favorite thing to do on a Saturday? - Go to Basha and go down the waterslides!
* What is your favorite dessert? - Ice cream cake
* Do you have a favorite movie? - Ummm....Monsters vs. Aliens right now
* What about a favorite candy? - Yes! Sour gummy worms!!
* What book do you pick to read most often? - Fancy Nancy books, and Pinkalicious one's too!
* Do you like indoors or outdoors better? - Outdoors
* When you pick out your clothes, what do you like to pick to wear? Shorts, crocs and my hair down and really long
* Is there anything else you'd like to tell me so that I can remember what you were like at 6 years old, once you're all grown up? - I like the mountains. I love to play in the mud when we're camping. I love to watch the Yankees and Derek Jeter with Daddy. I like to ride horses, especially Charlie and I like to pretend with Taylor, that I'm Pinkalicous and she's a unicorn!