Cloee Update

For results from Cloee's latest test refer to Cloee's Blog for info.

January 2009 California Trip

Update: I would love to blog about our trip but can't seem to find where I put the memory card from our camera. It will show up sooner or later. I can't remember what we did each day to blog about it without reminders from the pics on the camera.

Stay tuned for info on our annual California/Disney trip!

She's back/ Endocrinologist/ Next

Cloee came back from the living dead Monday morning. Thank goodness! No rash ever showed up so it wasn't roseola. Probably just some random virus. I must say this is the first time she has been sick since leaving the NICU. Well it has been the first time she has been sick from something that didn't have to do with her prematurity or her crappy lungs. Just a random bug. I guess she's just a normal kid, gettin' normal bugs. Man, I didn't know what I was gonna do if I had to hold her burning body again all night long. I should probably add that on day 2 of fever I realized that she had moved up on the weight category and could start having a higher dosage of Tylenol and Motrin. DUH! I had been alternating the meds every 4 hours and it wouldn't take the fever down. I was so frustrated and she was beyond miserable. So when I alternated the meds with the correct dosage things got a bit better. Why does Motrin always work better than Tylenol? Her fever wouldn't go away for over an hour after giving Tylenol and then would be back after 2 hours and I would have to wait another hour to give the Motrin. Stupid! The other choice would have been to not alternate the two meds but just give Motrin every 6-8 hours. But the fever would come back after about 5 hours so I would give in and give her the Tylenol. Anyways, she was back to her old self again Monday morning.

Today she saw the endocrinologist. This was because she randomly started growing 'breast buds'. Basically what we (the dr and I) decided was to watch the breasts for 3 months and then bring her back. The doctor said to watch for other signs of puberty- pubic and underarm hair, body odor, acne, etc etc etc and if any of that started then to call or email him right away- and he gave me his email address. Very nice doctor, I thought.

Coming up next...
We wait until next week when she goes to Phoenix Children's Hospital Radiology for the swallow study. We already know she has had severe reflux, but does she still??? I'm interested to know. And how the heck are her larynx, pharynx, trachea and esophogus? Dont know if this test will tell us but I am hoping so. And the BIG question is... Does she have a vascular ring??? I was telling Will the other night that I kind of hope they find the vascular ring only because it will give us an answer as to why she has SUCH problems with her upper airway. BUT... it will mean cutting her chest open. YIKES! Freaks me out to even think about. I am still so scarred from the time she spent in the NICU. Could I possibly handle another hospital stay? I won't get myself all worked up about it until I know for sure. At least I will try not to get myself worked up. Yeah right!
At this time I just pray for resolve. That's what I really hope for in my heart. I want Cloee's biggest issues to be resolved.
(It seems I have received answer in the ear area. After ear infections since July her ears have been great for 2 weeks now. That's a record for her.)

Not the ears...so what?

I just realized I didn't publish my post this morning. In fact, I guess when I was finished typing I was so exhausted I just got up and left the computer. Good thing it saves on its own. It was still on my computer when I just roused my mouse to wake my screen. What a dufus I am!

After I made it back to bed at about 4:15 this morning something started chirping in our house. I thought it was our security alarm but then I woke Will and told him to make it stop since it hadn't been to sleep at all yet at that point. He found the ever annoying smoke detector and disconnected it. Geez!
That reminds me. One time we had three smoke detectors start randomly chirping in the middle of the night. The SAME night. It was very odd.
On to more important items...

We just returned home from seeing the pediatrician.
I was bummed because our favorite gal, Dr Campbell, was out of the office today, as was our 2nd choice of gals to see, Dr Struble. So we saw our 3rd choice, who is a super great Dr but just not up on Cloee's many issues. Oh well.
No bulging ear drums like in the recent past. As a matter of fact no ear infections at all. Not even a little one. Not even the slightest of red eardrum. MUCH to my surprise.
Great, so what is it?!
I begin tearing up. I just wanted it to be her ears so we could move on to getting tubes and close this particular chapter in her long book of health issues.
"We can cath her and check her urine. Mom, would you like to do that?"
"Yes. Let's just find something and fix it." (Between tears)
She peed all over the nurses. (I'm glad, Cloee thankfully never had the catheter inserted and they were able to hold the tube while she 'sprang a nervous leak' and catch enough urine to do the tests.)
The quick test showed nothing but a little blood, which could just be from the Betadine swabbing, I hope.
I should be able to get more definitive results tomorrow. I'll let you know if it shows anything different.
At this point I'm praying for roseola virus to show up and relieve me of my current fears!

EVER

I'm delirious. Cloee is delirious. For different reasons, although I don't know what those reasons are. It is 4 am and I still haven't been to sleep yet, although thankfully Cloee has slept quite a bit, considering...

Could be the ZippFizz shot I drank today at 11 am.
Yes I consider it today still, today being Thursday. 'Tomorrow' doesn't come at midnight for me, like many. Tomorrow comes after I have been asleep for a period of time (I choose how long that period of time is) while the sun is down, which I have not yet done.
Would it hype me up for well over 12 hours? I dunno.

So maybe it's the excitement over realizing tomorrow (being Friday, which is really today to some people since it is well past midnight) is my 10 year wedding anniversary. It's a possibility I suppose. That's pretty exciting stuff!

OR...Maybe it's the fact that my sweet baby has a 104.3 fever. An hour after a dose of Motrin.

Yeah I'm thinkin' that's it.

I am unable to focus on the fact that she is alive, despite all odds, and be grateful for that.

Will she ever be healthy?

EVER could be a long time.
Or a short time.

I will let you know when we reach EVER.

Buzz Ride Photo

This is my mom and me on the Buzz Lightyear ride at Disneyland last week. Take note of my score vs hers.

OC Register pic

While on vacation to California last week we were burying Will in the sand and we had a photographer from the 'Orange County Register' ask if he could take some pics of us doing so. After we got Will all covered with sand then Cade sat on top of him and we put sand on top of Cade. This picture was taken just as Cade 'broke out' of being sand trapped. Click here to see the picture that they chose to display.