They say a picture is worth a thousand words

What she was looking at out the window:

   

 

So today was Kenzie's MRI. *exhales giant sigh of relief* So glad THAT is over! I knew going into it that it was going to be hard, but I had no idea HOW hard it would be.

See we arrived early(which is fine) and of course I'd forgotten to charge the portable DVD player that I packed so we were stuck watching some random irritating crud on the waiting room TV(or she was while I talked to a wonderful lady from Alaska). Finally 10 minutes after we were supposed to arrive, they whisked us off to the back to prep her, and let me 'settle in' (ha!). We had a wonderful nurse's assistant who was just a joy, and a great nurse too(actually the same one who put her to sleep last time we were in!) so we were very very lucky.

The poor wee thing did something she has NEVER ever done at the hospital before she broke out in a full on scream fit. I felt horrible because normally the nurses RAVE about how well behaved and quiet she is. Thankfully once we were in our torture cell sedation room, she calmed down as there was a very engaging playground below our window. She had to wear the embarassing gown, that somehow actually covered her bum!

We hung out snapped some pictures on my cell phone than the Anesthesiologist came in to put her to sleep. Let me say she did a wonderful job though my nerves at the time might not of said so. We were escorted from our room to the prep area for the MRI, where she'd set up the mask and almost everything we'd need. Poor Kenzie, though was very dead set on NOT being there. She kept pointing at the nurses, waving and saying 'Bye bye', while clinging furiously to me. So one of the assistants had me sit down in an office chair while they shoved gently placed the mask onto her face. Kenzie promptly held her breath aside from muttering 'Bye bye' repeatedly. That is when the scariest thing I have ever heard come out of a nurse was said "Oh by the way mom, don't be freaked out when her eyes roll back in her head, and it drops back" a moment later I got to see what they meant as we laid her out on the table. *shudders*

It was at that point I was kicked out dismissed to go 'grab a bite to eat'. I went and grabbed a quick salad, and came back to the room where I sat writing(strangely my muse decided THEN would be a good time to show up) and waiting.

Not long after, they brought her back, still asleep and went off leaving her attached to the monitor while they went to knock out sedate another child. Of course as soon as they were part way through that her alarms had to start going off, drawing in an NA, who of course had to wake her up *le sigh* and send us on our way. Literally I think we were there maybe 10 minutes after she woke up till we left and were on the road. *shakes head* So now we just wait until the 22nd to get the results.

Oh, on another note L is having a BOY.

Let the stress begin...

So now that it is officially July, it means that two things that have been stressing me out will now come to pass.

One- July 8th Mackenzie has her MRI on her brain. She will be sedated for it and the biggest stressor here is that as I understand it I will NOT be allowed into the room(or the viewing room) with her.

Two- July 22nd we have to go to the Neurologist appointment. In BELLEVUE. Bellevue is stressful enough for a 'country girl' like myself as it is a rather sizable city, and I do NOT like cities. Secondly there's the whole Neurologist thing. I don't get why we are going. Thankfully I can have our pediatrician explain it in 'idiot' terms on the 18th.

***Post is backdated*** Was written but never published (Sorry the stress has rather gotten to me this week).

My feelings about the situation in which we find ourselves

Today's post will be a follow up of sorts to yesterdays post.

I received the phone call from the pediatrician explaining WHY the schedule had been bumped up, and it is much as had been feared.

She is leaving her practice.

Now that may not seem a big deal to most people out there but let me explain something. I HATE most pediatricians(I'll spare you the down and dirty details as to why for now). So for me to not only take Kenzie to one, but to also fully switch 100% over(from a family practice) is NOT like me. I have raved in the past about our pediatrician, and all of it still stands true. Sadly she is moving her practice to a city that is much too far to drive for 'routine care' visits, about an hour and a half one way, so I can't follow her. *sighs*

My feelings about this whole thing are rather mixed.

~ I feel rather like I 'broke' kenzie in the fact that she has had numerous 'issues' since birth, and has seen not 1 or 2 but this will be her 5th 'ologist'

She has seen:

* Urologist * Cardiologist * Opthamologist  * Audiologist

~ I 'know' that I did NOT 'break' her but try rationalizing that to my single parent brain in which I am the one who provides all her care, and food, and such. I have no one else to blame the 'issues' on.

~ I feel kind of cold and alone, as I cannot make her father aware of the issues that she has or it becomes an 'oh woe is me' festival, in which the world must revolve around him and how screwed up his life is because Kenzie is 'broken'(doesn't help with my issues).

~ I tend to bottle my feelings until the point at which they 'explode' and I end up spending hours on the phone to my BFF Tiff, bawling my eyes out over how 'horrid' of a parent I am.

~ If I try and discuss any of the 'issues' with my family, I continually hear 'Oh she's young she'll just grow out of it', or 'Well why aren't you doing ____ or ____?' or 'You MUST of done SOMETHING to cause this, after all YOU put her into speech therapy'

~Some days I just want to curl up in a burrow and hide from the world for fear of another 'issue' cropping up and forcing me to learn about another 'ology'.

~ I wish I could wave a magic wand make my baby all better, and not have to go through another medical procedure.

~ Having had MRI's myself, I know that they are not 'painful' I'm just worried about how I'll control a toddler whilst she is having her BRAIN scanned.

******* ******** ******** ********* *******

Having said all these things do let me say this one-

I KNOW ITS NOT MY FAULT!

Sadly this doesn't help all the time, and while I have been preparing for hearing the words spoken(Your daughter needs an MRI, and to see a Neurologist) I had not been prepared for them so soon. Something about my favorite person on the planet is leaving, and wants to tie up all the 'loose ends' before she does so.

All your kind words have meant a lot to me, and I hold them near and dear as they help to buoy my spirits as we enter this, new phase of our medical journey. Hopefully this time the doctor won't give me a hard time about being 'smarter than their resident'.

Now if you'll excuse me I'm off to research Neurologists and pick the best one for my daughter.

In Which I reveal all

So the past week has been very long and trying for me, as a parent and as a person. Kenzie has been undergoing speech therapy since the middle of February having been diagnosed at the end of January, with a 'speech delay'.

We've gone in weekly for her appointments, been doing all the 'homework' that was required, and making some progress. Alas, that has not been enough apparently. We now have to go down sometime next month, and see a Neurologist, and have an MRI preformed at Children's Hospital.

I'll back up a minute and explain. See back in late March/early April Kenzie went into see our pediatrician, about some unrelated thing.  While we were there, we discussed her speech therapy, and the physical therapy, and the newest thing we had noticed which was a 'slight' tremor to her muscles. The pediatrician was concerned but not overly so, suggesting that we watch it, and re-convene in July, to re-check, and discuss at that point possibly having a Neurology consult done. She also at that time expressed interest in having a Occupational Therapy assessment done when we got the chance.

Fast forward now to last week. Wednesday we were at speech therapy, and I asked the therapist about the OT referral we had received as here it was a full month and a half later, and it still hadn't happened. This conversation turned into discussion of the Neuro consult possibility before we left. 

Skip to the next day around noon. My phone rings, and I glance at the display, and see that it is the pediatrician's office calling us. I pick up to the very lovely voice of our AWESOME nurse whom I love. She was calling to inform me that they were going ahead with the consult referral, and just wanted to give me a heads up so that when the Neurologist's office called me I wasn't totally shocked(You mean like I am right now?!).

Now skip to today. We arrived for ST, and PT, at our usual time, went and did our thing. While we were there I casually brought up my conversation with the Ped's nurse last week. I was curious if they had, had a 'discussion'* with the Pedi at some point the prior week, thus bringing about the phone call. They both answered in the negative that they had NOT had a discussion with the Ped; BUT they both felt very strongly that we should proceed with the consult as she is not making 'marked' progress and is still occasionally exhibiting signs of a slight tremor.

So as it stands right now, at our PT, ST, and Pediatrician's recommendation we are going in July at some point(date TBD) to see a neurologist, and have an MRI preformed. Looking for what? Nobody quite knows(this is the answer I continually get), so its basically a crap shoot as to wether or not we 'find' anything. I will keep you updated.

* Our Pediatrician and our speech therapist/physical therapist all share a building and a lunch room, all have freely admitted to having 'discussions' about Kenzie over lunch. Which honestly freaks me out a little, because seriously, don't y'all have something better to talk about like say the weather?

A round up of the trips to seattle

So yesterday was obviously our trip to Children's that went remarkably well with Kenzie passing all her tests with flying colors. Audiology came back great, she missed a couple sounds, but she was very focused on the audiologist in front of us at the time. Her eye test was okay though it is really difficult to get a good reading on a toddler as they can't do the reading chart. We have to follow up with her Opthomologist in November, to recheck her eyes, and the cup to disc ratio which was a wee bit wonky last time.

Today I drove down to the U-Dub and met my wonderful new Endocrinologist. I felt very comfortable with him, and didn't feel rushed at all. Though I was a little dissapointed that there wasn't much he could tell me right now since we didn't have a current set of my numbers in front of us. We did look at my TSH numbers from December and they were about a 1.3 and the 'normal' is between .3 and 3.o according to my Endo. We also looked at my Free T4 numbers which were very elevated but not outside the 'normal range' of 4.5 to 13.3 I was sitting right about an 11.4. The issue is that we didn't have a current Antibody count in front of us therefore limiting what we could figure out. He did order a Thyroid U/s so that we could get a baseline picture of what my thyroid looks like since I have a sizable goiter at the moment. He wasn't able to provide me any 'new' information that I haven't learned and until we get the test results back I don't know when I will be following up with him yet.

Wordless Wednesday

Today was our children's trip, more on that tommorow when I write about my trip to Hell The U-Dub.

U-Village was on the schedule today:

First Time on a slide

now hang on a sec, lets take a jump back to that Time Travelin' post....

Then (15 months)

Now

Then (15 months)

Now

Now, If you'll please excuse me while I go tell my uterus to shut up, that'd be wonderful.

*insert appropriate song title here*

Tommorow, we will be getting up at the break of day(or what will sure seem like it) and venturing once again into the barren concrete wasteland known as Seattle. Mackenzie has a visit to children's hospital, where we will be having a battery of tests run to check her hearing, and vision.

I had pain and torture today, so if you'll please excuse me while I go curl up in the corner and pass out. I apparently need to stop trying to push myself this hard it HURTS.

Buts, Butts and juice

So today was a pretty blah day except for the fact that mackenzie learned a new word- BUT, at the moment she doesn't know what it means thankfully but she wanders around pointing at things and going 'but' (which comes out sounding like fut) its cute but will get old quick i can tell i think this brings her up to a grand total of 13 words. We are supposed to be getting scheduled for a speech therapy consult though I think she is pretty normal, she babbles a lot she just doesn't like to speak. Though I guess its better to be safe than sorry.

(really long back story here)

Now as many of you know back when kenzie was 3 months old she got her first UTI which was diagnosed by the wonderful folks at the hospital's ER. We were later refered down to children's by our FP's partner(she was on maternity leave) to get a VCUG(flouriscopic voiding cytourerthrogram) and a Renal Ultrasound to diagnose, any problems. It was at that time she was diagnosed with Vesicoureteral Refluxation of the III grade. The PA that we saw I didn't like(i didn't know at the time she was a PA) she had the WORST bedside manner EVER. Basically she told us that 'there is nothing we can do other than leave her on antibiotics'. So we came home with a prescription for some bactrin and orders to follow up with our FP.

Well we followed up with her at our regular WCC in december(she'd been diagnosed in september) at 9 months old. We were at that time given orders to re-see the PA in June/July to follow up a year after diagnosis. A few weeks later, Kenzie became inconsolable, fussy and was just not herself. So I called the FP's office to try and get an appointment as I suspected a new UTI. Well unfortunatly our FP was unable to see her BUT the brand new pediatrician just happened to have openings. We got an appointment less than an hour after I called(i seriously LOVE our pedi she's amazing) went in and took a urine sample by cath(which if you have never had to hold your child down while they catherize them count your lucky stars) and confirmed that she had a UTI. The Ped sent us home with a scrip for Amoxicillian, and orders to come back in a couple days for a reculture. Well we went home did the scrip routine, and came back. We ran another culture to find that her levels hadn't dropped at all in fact the little buggy boys had MULITPLIED. So we opted for some stronger antibiotic, and a order to check back monday. Well come monday still no change other than that the levels had stayed static and not gone up. So at that point she sends us home with some Omnicef, and let me tell you with in HOURS of her first dose kenzie was a whole new baby.

All the while while this was going on we(the ped and i) had been talking about when we were supposed to follow up with children's for a repeat VCUG and Renal U/s. Since I had so severely disliked the last urologist we'd seen down there(the PA) I hopped onto their website and started researching doc's. Well that was when I came across the little fact that the urologist we'd seen was a PA not an MD. So needless to say I was NOT a happy camper. I was lucky enough to find a WONDERFUL Doctor down there who SPECIALIZES in VUR. So on our next follow up to the pedi, when she and I decided it would probably be best to follow up sooner w/ the doc, I told her that I wanted to see Dr. Joyner. She said she'd get it set up and have them call us. A couple days later we got a call from children's to arrange the appointment with him. Apparently he is a very busy man because the first available appointment was in APRIL. But hey, this guy is the best right? OF course we'll wait for the best.

Between january and april she kept having reccurring bladder infections and was on constant antibiotics that caused her to have a HORRIBLE diaper rash. Imagine what your feet look like after they have been in wet socks all day. Than add in some blood, and giant cracks, and general pain. She had to have a 6 step diapering regime for it. first we had to change her as soon as we knew she was wet, secondly we had to wipe her with a wet WASHCLOTH(no wipies), (3)than we had to dry her with a dry washcloth, (4) apply a LIGHT coat of baby powder, than the bactrin ointment(for the open sores), (5) coat the rest in calmoseptine(used for bedsores) and finally (6) we could apply a new diaper. Her diaper rash got so bad that we actually had her on Zyrtec for a while because it helped with the puffiness, redness, and swelling of her poor butt. Every diaper change was pure hell.

Our visit to childrens was April 10th. I must say that I LOVED Dr. J from the moment we met him. It was night and day from our last Urologist. He smiled, had a wonderful bedside manner, appreciated the fact that I had done my research, and actually joked around with me between his explanations(i have a really good sense of humor that comes in handy down there sometimes). He looked at her films and reconfirmed what we already knew that she had a stage III VUR and had been having breakthrough infections on the meds. He and I discussed the options and we both agreed that doing a Deflux injection endoscopicly would be the best way to handle the treatment. Now at that point I expected that we would have at least a week to wait before the procedure. It just happened that he had an opening a few days later on the 13th and could squeeze her into the schedule. So we went in on Friday the 13th and had the endoscopic procedure done it didn't take that long and she got both her right and left sides done(she'd orignally just shown symptoms on the right in the VCUG but the other side looked just as bad). She was put on Nitrofurantoin and we were instructed to follow up in 6 weeks with another VCUG. We did that and came back and she was ALL better(mommy sigh of relief) so we started 'weaning' her off her meds and had her completely off by mid-july. Since than we have had ZERO breakthrough infections. We had a couple suspected breakthroughs but they turned out to be false alarms.

(END LONG BACK STORY)

So that brings us to tonight. I fed kenzie dinner and took her out of her high chair and went to carry her upstairs to bed. Just as soon as I touched her she started CLENCHING(tightening her abs and body) which isn't a good thing(if you've ever tried to carry a board stiff toddler you know what i mean). So I carry her upstairs her wailing incosolably the whole time that I am touching her. We get upstairs and I take her jammy off(i'm a bad mother i know) to change her diaper for bed, and pull the diaper off to reveal a HORRID diaper rash. Now over the course of the last few months I have come to realize that juice makes her have really acidic urine/poop so I try to avoid it at all costs. I gave her a SMALL amount yesterday(1/2 ounce in 9 ounces of water) so I am wondering if she is THAT sensitive or if it might possibly be another UTI as she is also exhibiting her 'symptoms'(she doesn't do textbook UTI symptoms) of clenching, being generally inconsolable, running a fever(100.9), and just not being herself. At this point I am not tooo worried because our 'magic number' is 101.5 which at that point we MUST go into either the dr's office, emergent care, or the ER depending on the hour. Sooo wish us luck that it isn't a UTI.