Gale Munchkins

So, we thought Kaylee had finally out grown her HSP ...only, after speaking to the doc in Utah...the mottled appearance to her legs is actually Livedo Reticularis ...which is just another manifestation of the vasculitis . There is no treatment, other than taking care of the underlying cause, HSP , which isn't curable...plus, she came down Monday after taking a shower to show us that she has spots on her legs again... grrrr .... She is back in school, mostly full-time. We've still got her set-up for homeschool ...in case of a flare-up. Otherwise...she is happy & loving school!!

Our Thanksgiving break was preceded by the dreaded flu bug...but before I go there...(working backwards...) Thanksgiving day, (despite having smaller appetites )...we were able to gather with family, the Elders & friends...have a yummy meal (big THANKS to Mike's mom for preparing all of it) ...play a few games...scope out Black Friday ads...move furniture around... Before that, Wednesday was all about napping, TV, napping, and not eating (even Kiera & Mikenna)...because the previous night... 10:30 pm...baby monitor...we hear the dreaded sounds of someone throwing-up...rush upstairs expecting it to be Kaylee...and it's Kassidy -still asleep-all over herself, bed & Kiera below! ICK !! A few hours later, I decide to follow... Earlier...we're home, Kaylee is achy and crying...Kassi asks, "Why is Kaylee crying?" "Because her tummy doesn't feel good." Kassi, "My tummy doesn't feel good either." (We're thinking she's havin...

not acceptable!! So, WHAT DO YOU DO??? Let me know, and I will try them ALL...because Kaylee....grrrrr..... for example...tonight.... {It is time for bed, we've let them stay up late to watch a few shows with us} {Kaylee has gotten into the habit of sleeping with hot packs, filled with rice, warmed in the microwave} {she can now warm these up in the micro on her own} Mike: "Kaylee I've told you a 100 times (tonight), go warm up your hot packs !" Kaylee: "Dad! I've told you 1000 times , I need someone to go with me! " {And boy, can she throw attitude into her phrases! GRRRRR!!}

We have been prednisone free for about 3 1/2 weeks now with no obvious symptoms of HSP!! Hopefully Kaylee has finally "outgrown" this auto-immune thing and we can work on ridding her body of the meds we had to put in her. Her legs still have a mottled look, almost like a bruise that is on the verge of fading away, but hasn't. You've probably been able to tell that a few of the side-effects are subsiding as well...each day she is looking more and more like herself. We have finally gotten into a workable routine of homeschooling...just in time for Michael & I to decide to put her in for a few hours/day at school. Kaylee was a bit nervous when we first mentioned her going back, but agreed when we explained our plan. November is a crazy month with holidays and PT conferences, we figured it would be a good way to ease in. SOOO ... today Kaylee had her first day back to school!! She loved it!! (and so did I!!)

Our room has become the family "hospice" center. These past few days Kiera & Kassidy have slept on our floor because of icky coughs, headaches, and owie necks. (Also a few nightmares.) Of course you already have Kaylee (her bed is to the side of the room) in there...(btw...we are completely off the prednisone now and have had only a few days of achy joints where she can't walk...keep us in your prayers)...and then Mikenna...who we did have in her own crib and everything, until the 2nd trip we'd made to the hospital...at least she hasn't gone back to her binky~right??? Anyhow...Currently we are back to Kiera & Kassi upstairs in their room, hopefully Kaylee will follow soon and then the baby!! The pitfalls of have the master on the main....

again... So, we are now down to 2.5 mg/prednisone and Kaylee is doing relatively well. She has an undeniable crop of new spots on her legs. We are keeping a careful eye on them. However, no tummy cramps at all!! We'll see what tonight brings. She does have quite the runny nose and a sore throat again. Grandpa is still in the CCU. They discovered that he had been bleeding internally, thus causing the inablility to stand-up. The bleeding was most likely caused when he fell in the bathroom Fri. night at the hospital. They'd done an x-ray to check for broken/fratured bones, which was negative, but no one thought to check for bleeding...they are hoping with the blood transfusion and other drugs, rest for the next 24 hours, (what else can he do?) that he won't need surgery.

Wow...we are now into week 13 of this HSP thing...never would have imagined that it could go on for so long!! So...we are once again weening off of the prednisone ...we are currently at 5 mg/day...with tummy pains starting about 9 pm and lasting through the night...we know this because if we don't alternate IBP & Tylenol...she wakes up crying...so...we are still hoping to stay away from the Dapsone . She continues to have crops of spots come and go, and they also seem to clear up quickly. Kaylee is such a trooper!! She has been extremely brave and patient. Of course she does loose it at times, but for the most part she has been doing great. Her icky blisters on her feet have finally "softened" due to Mike taking the time to "pop" them all. It was pretty disgusting, but we are glad to have her walking. It was killing my back to carry her around, to and from places. We finally had my dad bring home the wheel chair. Despite decreasing her medicine, the blood...

Seems like I was just on here posting gobs of updates...and here I am 11 days or so later...not that I have much to say. We've been in Utah for the past few days. Up until then, I don't think much was going on. Kaylee had an awful flare-up of spots on her left foot. She had several painful blood blisters on her toes, as well as the bottom of her foot. Other than that-spots come and go, no stomach pain to really report, and a few days of joint pain. We had Kaylee tested at LifeClinic with Kherna , who has been doing EDS testing for over 10 years now. EDS is basically, an alternative heath method combining acupuncture points, a computer, meridian points, homeopathics , and supplements--working together to balance your body...so yes, obviously Kaylee's body is WAY STRESSED...so hopefully with the different supplements and homeopathics , we can get her body to do what it needs to, or at least as healthy as we can so her body can heal! I've been there myself over the past f...

Despite Kaylee's illness, we were still able to make it to our annual camp out at Mt. Rainier. (We had grand plans to do all sorts of camping this summer.) I let everyone else take most of the pics...so if we're lucky I'll get copies. (I'll snatch some for now from Allison's blog.) Last November there was a huge rainstorm (18" in 36 hours) that melted snow already on the ground which caused major flooding & damage. i.e. 1. it washed out a huge section of the road that Uncle Ted & Aunt Audry were to drive in on...so they had to take a 2 hour detour in order to join us. 2. We tried to go crawdad fishing, but the road up to the trail head was washed out. 3. visited the Blue Hole, which is no longer there...it's more like the Blue pond that everyone enjoyed swimming in. We still managed to enjoy ourselves. Like I mentioned above, all of the kids and some of the grown-ups, enjoyed swimming around in the Blue Pond. We watched some "crazies" jum...

Here's our Kiera, all ready for her first day of school!! (Mikenna had just woken up.) We're hoping Kaylee will be able to join her at Lincoln soon, but until then we'll homeschool.

Yes...a BIG UGH !! from us! Kaylee woke up from a nap Wed. afternoon with a bit of a tummy ache(5:30pm). So, gave her some Tylenol, had her eat, gave her some IBP ...she started throwing up abouts...6:30 pm, couldn't get anything to stay in her...not even her pain med or prednisone , etc....we kept trying... meds , throw-up, meds , throw-up...thought we had it a bit under control by midnight, but she threw up again...20 min after we'd gotten some meds in her...she was in so much pain...so back to the ER... Well, most everyone in the ER had never heard of her condition...they looked it up...the doc came in...wanted to give her some anti- nausea stuff...I asked why? (because...her throwing up isn't because she's nauseated , its because her stomach is cramping and cramping until it finally gives a big squeeze and everything comes out). I just wanted to know if he had a different view as to how to treat the whole thing...so, he decided to consult Kaylee's previous v...

So, I suppose it's time for another update on our Kaylee... We have now finished with week 6 of this illness...thus the "average length of illness lasting 4-6 weeks" have now past and we still have spots... Yes, spots , spots , SPOTS !! ( Vasculitis ) Every day we have new ones...you can tell they're new because they are bright red ! Then you have the very dark purple ones , the not so dark purple , the fuzzy edge purple ones , the cloudy purple ones and then the light light purple ones . Will the spots every go away? The newest thing with the spots are that the last batch of them were very painful for Kaylee. When they first show up, bright red ones , they are also a bit puffy...and for some reason-over the past week, when they're puffy they are also extremely sensitive. Kaylee has been such a trooper, hardly complaining... We've only had 2-3 days where she hasn't been able to walk because of achy joints or muscles...and it's been about 1 1/2 weeks ...

Kiera had many birthday celebrations this year...Emma (her most favorite cousin) was going camping with her family over Kiera's b-day weekend, and so, we had her spend the night and celebrate Kiera's b-day wed/thurs. Emma was very anxious to have Kiera open her present and sing Happy B-day to her. Then we had her "friend" party...which to keep it simple and because I decided so late to have it, we just swam and played games in the pool...btw a perfect way to have a party! Luckily, not all of her friends were vactioning and we were able to have a nice little group. Later, we celebrated again when more family gathered at our home. (I know the girls enjoy the special attention and love singing happy birthday over and over again.) Kiera requested the same Barbie cake as last year...being that she'd had her accident and didn't get to "taste her cake" and we had enough cupcakes to create the swan...although we thought it looked a bit dinosaurish... FYI: Y...

I can't believe it's already a week into August already!! Let's see...this past weekend we were in Seattle for a few baby blessings, an anniversary celebration and just hanging out with family. Kiera attended a gymnastics camp and learned to do a bridge kick-over ( precursor to back walk over). I just started Harry Potter Book 7 today... Kaylee's pain is being "managed." She still has stomach cramps off and on, the spots keep coming and going, and there are a few days here and there where she can't walk. She is drawing and coloring, reading gobs, and trying to stay positive. My parents are off visiting Tanya & Andy for a few weeks, Melanie left last week to do the same. Guess that's all for now...

These past few days have been... hair pulling ... here is a rough synopsis... Wednesday & Thursday ...both were relatively good days. Nights were restful; mornings Kaylee is up and about; by mid-afternoon achy legs and ankles; by evening, swollen ankles to the point that she can't walk. Plus, with her 3rd round of spots barely beginning to clear on Wed. afternoon...she had round 4 spots appearing~on top of the still very visable round 3 ones and spreading to her upper thighs and arms, plus her ears. Friday ...Kaylee wakes up and has a tummy ache, so we give her meds an hour early...Mike calls doc to discuss the continued spot break-out, achy/swollen feet and the am tummy aches...he says to add another dose of meds through the day...which we do, thinking we were "on top of the symptoms." Mike and girls & Aaron and fam. camp out in the backyard again...We give Kaylee her 3rd dose of prednison at 12:30 am... 2am arrives, Kaylee has major tummy cramp s ...coming and g...

Sunday~ July 22, 2007 These past few days have been rough. We thought we were in the clear with the whole HSP thing...but Thursday night Kaylee was up from 12 mid until 6:30 am with major stomach cramps. Michael and I were managing well, thinking it would last only a few hours, like the night before...but when 4 am came along, we were tired...her cramping just kept going and going...with maybe a 5 min break here or 10 min there...by 6:30 am, we finally gave her the next dose of prednisone (which was 3 hours early) and she finally slept. We didn't want to go through that again, talked with the doc, came up with a plan...but her cramping started up again about 7 pm, and by 9 pm we knew it wasn't working... So, here we are, Sunday...with a plan that works much better (doubling her dose of prednisone ) especially now that we figured out that the concentration levels between her 1st and 2 nd prescriptions were WAY off...Hopefully we won't have any more problems and Kaylee W...

Well, this is what the Doc told us today...we should probably limit Kaylee's activities to "around the house" type things through Sunday, and then perhaps after that only one "major" activity/day. He doesn't think that all we've done this past week brought on this 2nd round of HSP, but it didn't help either. We'll "up" her meds (prednisone) and then Kaylee will have to go in each week for the next 6 weeks for blood workup and other tests. He is positive about it resolving itself...but for now we need to "take it easy." He said in his years of practice, he has only "managed" 2 other cases of HSP...one was recurring and finally resolved after about 5 months...and the other within a month...hopefully Kaylee's body can be back to full health sooner than later... BTW...she woke up last night about 2:30 am, with major stomach cramps...threw up abouts 4 am, then again at 8 am...slept the morning away and woke up with a ...

So...We've been busy with swim lessons and dance camp...but perhaps it's been too much for Kaylee because her legs are spotted AGAIN!! I read up again on HSP and I guess the symptoms will last 4-6 weeks!! (I found another site with info on the HSP in case you're interested.) We have a follow up with the Dr. tomorrow...we'll have to find out if all of her activities have brought on this latest "spot" attack or if it's just part of the illness. BTW...spots are the result of vasculitis...which is a result of the HSP. I'll post a pic later...beware...it's not pretty :( You'll have to click on the pic to get the full effect...the red light is a cold laser that helps with cellular healing...or something like that...

Henoch-Schönlein purpura (hen-awk shern-line purr-purr-ah)...that's what Kaylee was finally diagnosed with. The cause is unknown, but they know it's triggered by "bacterial or viral infections, medicines, insect bites, vaccinations or exposure to chemicals or cold weather." So, we're thinking it was this spider bite Kaylee had a few weeks ago (her arm swelled up and was tender...) or maybe a bit of the flu she caught from the Family Reunion in Idaho. Her rash started off with a few very tiny spots on Thurs. or Fri. (5th or 6th)...we thought were some type of bug bite. But by Sunday night, you can see what those little spots turned into. Her right foot was all swollen, left one was beginning to. Her knees and elbows were very tender and achy. She started having stomach cramping and was throwing up by Monday afternoon which continued over the next few days until we decided it was probably best to admit her to the hospital. We didn't want Kaylee to get totally ...

we have a sick little girl in our home...our Kaylee is sick...she has an odd rash on her arms and legs, (giving her some groovy spots) which the doctor believes to be a strep infection (which has also caused an ear infection)...and on top of that we also think (the Dr. and us-parents)she has the stomach flu which has gone out of control: cycling through stomach cramps, throwing up, stomach cramps, throwing up... your happy thoughts and prayers are welcome and needed...