Heading to Florida and Other Things

We're heading for Florida TOMORROW!  I am so ready...at the same time as being NOT so ready.

An ice storm Tuesday along with a power outage put me behind schedule one day.  Today Emily had a doctor's appointment which ended with a three hour ER visit.  Her "sore arm" turned out to be broken up near the shoulder.  I don't want her to end up with a victim mentality but some days it does seem as if she was "born under an unlucky star" if you know what I mean.  She's young, she should heal quickly.  AS THE WORLD TURNS, out of ALL MY CHILDREN, she sure knows how to turn our lives into a soap opera.  Maybe that's just what happens to THE YOUNG AND THE RESTLESS.

BUT while I was out with the three younger ones, Jamison and Megan took it upon themselves to straighten up the downstairs, clean the bedrooms, burn the trash, and clean the kitchen.  I've got some pretty great kids.

Since I can't sing California, Here We Come, I need a song for Florida.  On the way down we're stopping in North Carolina to meet my friend Sandy.  I'm so excited!  I've been hoping to get together for awhile.  In Florida, we'll sponge off my in-laws, enjoy hearing my f-i-l sing with a male chorus under (the famous) Lloyd Kaufman, head to Sanibel Island for a day, take in a rodeo, and enjoy life in the sun for a bit.  Ben and Janelle and their crew will be coming in on Tuesday just to add a little more stress and fun.  Eight kids under 12 and six adults should make for a fun time.  Carl and Martha may decide to be snowbirds for an extra month or two after we all leave.

If Emily gets sick...I am ready to throw in the towel on traveling with her or doing anything else.

Milwaukee called.  They have an opening for Emily on March 13 or not till the end of April.  I am totally torn.

If it's just RTA I hate to put her through unnecessary testing and stress.  Not to mention this is one or two days after we expect her to get sick again.  This means traveling with a puking, possibly dehydrated child for fifteen or more hours.

IF we decide to keep the March 13 appointment, I'd probably get home from Florida on Saturday and get on the train for Milwaukee on Sunday-hopefully hitting Milwaukee before it hits.  With Emily's track record the likelihood of this is about 0%.

If it's NOT just RTA, I hate to not be aggressively looking for answers.  Dr. Li plans to meet her, have a psychologist do an evaluation of US, and send us on our merry way.   So IF she winds up in the hospital there I guess it's possible that they could make some decisions about what to do and save us a turnaround trip back to Milwaukee.  

I'm a black and white sort of person.  I despise dithering.  I wouldn't mind a little visit from the Angel Gabriel, a talking donkey (although cows might be more appropriate), or a voice from Heaven  announcing WHAT is the best here.  Feel free to weigh in.

Eight hours ago I was planning to go to Milwaukee.  Now I'm not so sure.  Stay tuned for more of this particularly boring soap opera.

 

At Our House

Have you ever seen the show Hoarders?  I watched it during this last hospital visit.  While I'm not quite at the point of storing urine in bottles because our toilets don't work nor do we have rooms full of stuffed animals or home shopping network treasures, there were enough similarities that I made a resolution or two.

Yesterday, and, yes, it took ALL day, I excavated six feet of countertop that's been buried since we came home from China.  I wrote thank you notes.  Three of my children couldn't resist the urge to grow BEFORE the season changed so today I put all the flood pants away and went "shopping" in the upstairs mall and put the next size up in their drawers.  Of course, I didn't get Mt. Laundry-Everest done first...so I'll have odds-n-ends showing up for awhile.  I went through six bags of hand-me-downs and restocked the upstairs mall.  Murphy's law has decreed that this means someone will...*bless me* (yes, it is a blessing, but just once I'd love to have a couple weeks without unsorted clothes sitting around) with more tomorrow.

We are two-thirds of the way through the school year.  We finished our homeschool review for the first half.

Megan went to a birthday party.  Guess what they did for fun?

This is what happens when ALL the heifers escape and play tag when your yard is wet.

Nice, eh?

It's the farm version of aerating your lawn.

This is what happens to the baby of the family.

Davis and Emily had fun playing with Handy Manny's motorcycle.

 My kids took control of the art section of their education and painted these bird houses.

I guess that tongue helps him focus?

Kaitlyn, Lydia, and dad enjoyed a new DVD.  Aunt Janelle sent the kids a care package that was a hit...once they figured out that it was for them.  :-P   Janelle assured me that this Praise Baby DVD will calm Abby when nothing else will.  She figured it would be a great alternative to the Wiggles.  She was right!  It took a bit but Emily loves it.

Our oldest daughter sans face paint.  :-)

We aren't sure what to do about Emily.

Nephrology: says it's RTA.  No need to pursue anything else.  BUT she's been on the medicine for two months with no change in frequency or duration.   They say to give them three more months.

GI: says they think there's more to it.  It's in her best interest to get her to Milwaukee where a team will evaluate her and begin working to isolate triggers for cyclic vomiting.

I hate to put Emily through a bunch of unnecessary stuff if nephrology is correct, but I'm not convinced they are.  Kenton is okay with moving forward but his personal choice would probably be to wait out the three months.  I took an informal poll of several nurses, Emily's last medical team, and another mom of a kid with cyclic vomiting, EVERY LAST ONE said GO TO MILWAUKEE.  When we finally hear from Milwaukee I think we will try to get there asap....of course, everything is subject to change.

Home

We're home.

Emily is still throwing up a bit.  

Not yet very happy with life.  

Just a couple smiles today.  

We're hoping to see more personality return in the next two days.

Hospital Again

Emily came to the hospital on Tuesday.  Each day we've thought she was going home.  It will not be until tomorrow at the earliest.   She has not been able to keep much down today.  The team insists she needs to take this one medication.  I've been refusing because she throws it up.  Now she's also started throwing up the oral anti-nausea drug.   We'd like her to take it orally because it won't be available by IV at home, but she's not keeping anything down anyway. After six days, we're a bit discouraged.  We expected to see some major improvement by now.

It does seem that they are getting closer to answers.

Nephrology is CERTAIN it is RTA (renal tubular acidosis).  They believe they have ruled out all the possibilities except distal (?!?) RTA.  There is a definitive test that Emily will take once she is well that will prove whether or not she has this type.  No cure, but easily treatable from what I understand.

GI is saying GO TO MILWAUKEE.

Pediatrics is not convinced it's RTA but they are saying it's a possibility. 

I probably shouldn't say this publically but I'm not wild about her nephrology doctor.  She has said two things that are beyond stupid.  One was that we couldn't automatically assume every episode is caused by the same thing--Really!  I've never had a child get sick for nine days every three weeks.  That's quite a coincidence.  Emily's been on the meds they use to treat this and still had two routine episodes.  IF this is the problem, at what point will she start to respond to treatment?  She also said that using this medication should improve Emily's attitude.  WHAT?!?  "She will be happier, not so unhappy all the time." Like I said, "WHAT!?!"  She is NOT unhappy.  She is loud, joyful, exuberant, and active when she is not sick.  This is almost insulting.  Please, check with me before you assume that my child behaves the same when she is sick as when she's well.  I think the doctor is a lovely person with a fascinating accent, but VERY difficult for me to communicate with.

I'm a little frustrated with doctors ASKING to touch my daughter's belly.  You KNOW you're going to do it, just tell her you'll make it quick.  I'm also frustrated with people TELLING me I need to encourage her to drink.  Maybe I look learning disabled but after riding this roller coaster for the last six months I know a little about hydration. 

If you want my gut feelings: It may be RTA, but if it is, I think there's more going on.  I'm ready to get off this particular roller coaster for a couple weeks.  

My friend Rebecca is here recovering from surgery.  We are so thankful that she is doing well.   She'll need some chemo once she's recovered. 

My brother Steve has been diagnosed with skin cancer.

Not Yet or No

 Emily began throwing up around 4:30 p.m. today.  The reglan seemed to help keep it calmer initially but she threw up the second dose and it's been pretty constant ever since.  I kept track because they always look at me like I exaggerate when I take her to the ER.  She's had 29 episodes of vomiting/heaving, mostly the former, since 4:30.  It's not quite 9:00 p.m.

(Little Miss Bright Eyes on Friday)

Milwaukee called today.  It looks like, barring some intervention, they will be unable to see Emily until the end of March or early April.  

Bring on the straight jacket. 

Keep the faith and Milk the Cow

We celebrated Chinese New Year with some old and new friends.

Kenton sprained his knee sledding with the big kids when we came home.

The Bible talks about the elders anointing the sick.  The leadership team anointed Emily yesterday.  I know that sometimes God says yes, sometimes-not yet, and sometimes-no.   Does that sound like a cop-out?   As if we're giving an out to a powerless entity?  Or does it take more faith to say, "Your will be done and use it to bring glory to Your name"?  Does it show a lack of faith that this morning I realized that unless God healed we'll be holding the bucket a lot this week and started frantically cleaning and doing laundry?  Or is this just our version of "Keep the faith and milk the cow"?  No doubt  volumes have been written on this topic.  Right now I don't have a lot of time to analyze this.  If Emily is not healed then I don't want to leave my home in an uproar so I need to get busy.

So I will keep the faith and clean my house.

Dolls

 Since the sad day when my mom made me quit playing with dolls...my next greatest hope for the future was that I would someday have girls of my own to take on the tradition.

Woohoo!  I have at least two that like dolls.  

One of my favorite gifts for them is adding to their doll clothes collection.

I can make them pretty inexpensively and they usually like what I make.

  

At Christmas this year I made time for the traditional gift.  I was kind of appalled when they didn't seem too impressed.  

So I've been pretty tickled to "catch" them busy with dolls now and then.

As for #3, the jury's still out.  Right at the moment she is far more excited about "Mimi" than anything else.

Well, there was one night recently when she decided the "crying baby" was a great one to play with at 1:30 a.m. 

She likes to stick her finger in the baby's mouth as it cries.

I guess that means there's still hope.  

Gotcha Day

 I like tradition but I'm not great at setting traditions.  

Some of this is because I'm lazy; a lot of this is because I hate to set a precedent.

So we've gone to the children's museum and we've gone out for Chinese food and given a special book.  This was the year to decorate gingerbread houses.  It was a great activity for two reasons: I didn't get this much-loved activity done at Christmas and it involved everyone. :D

Gotcha Day for us is a day to celebrate family.

I've heard of families that don't recognize the day their adopted child joined their family because it's not "fair" to their biological children.  

Frankly I think that is complete and total hogwash. 

Life isn't fair.  Get over it!

It isn't "fair" that two of my little girls aren't able to be with their biological families.  It isn't fair that they had to leave everything familiar to come to a new home.  

So our little crew had a great time eating candy...decorating houses.

They were all quite dedicated to eating creating the perfect house.

Several days later, the denuded houses still languish on my counter.

I guess graham crackers sans candy are not that terrific.

In other news, Emily had more doctors' appointments yesterday.  Nephrology says it MIGHT still be the kidneys that are causing the problem.  She's had blood/urine labwork done twice in the last week.  They may be getting closer to discovering whether or not renal tubular acidosis is causing the problem.  "TAKE THE IRON," Dr. Grossman says.  But it is beginning to look like it is may NOT be the kidneys.  She suggests another MRI and another consult with neurology and agrees that a visit to Milwaukee is good.  The more eyes the better.

Dr. Riedel says, "DO NOT TAKE THE IRON. How soon can Milwaukee see you?"

Compromise: lots of red meat, multi-vitamin, no iron drops.  

Waiting to hear from Milwaukee.

It's been a rough week.  Lots of snow, lots of colds, three ear aches, much medicine.  

Also, lots of sleep, lots of mess, and now we're (mostly) better so guess what today will be all about?

Three Years

It's hard to believe that three years ago we were waiting to bring home this little miracle.  

We've had some rough moments but it didn't take long for us to fall in love. 

Kaitlyn has been so much fun.

Happy

Smart

  

Independent

She's growing like a weed lately, constantly dressed for a flood...or having to hold up her pants when she runs. 

We knew she was a natural big sister and she's proven our point, over and over again.

She's bugging me constantly to "do school".

She loves her dolls.

We are so blessed to have Kaitlyn Ying in our hearts and home.