Lonely no More:)
And whoever welcomes a little child like this in my name welcomes me. Matthew18:5

Saturday, September 1, 2012

More Testing

When I left off last time I think we were scheduled to see a neurologist and do more testing.  That was last Friday.  August 24th.  They were already closed by the time we got out of the hospital so I had to wait until Monday, the 27th to call.  I called and made the appointment that morning for the very next day at 2:00.  I then went off to school with the girls....told the teachers they would miss the next day of school, thinking we would just make the trip in one day.  When I got home from school I had a message from the neurologist saying that she wanted to admit Wren to Childrens Mercy Hospital for more testing.  If they admitted her, we could have it all done in one trip....otherwise we would have to make several trips to get appointments with all the specialists. I was scrambling to get bags packed for 4 of us!  Two bags to go to the hospital with Wren and me, and one to go to the motel with Troy and Iley.  Then get someone lined up to keep an eye on Harrison and Sherman while we were gone.  We were admitted at 6:45pm. on Tues. after visiting with the neurologist.  We headed home again on Thursday eve., the 30th at 4:30.  The girls.....and us...have spent 20 hours in the car in the last week!  THEY are AMAZING little travelers!  What a blessing!  They just hunker in and ride it out!  They watch a lot of Tom and Jerry & Wiley coyote and just mess with their toys and books.  With limited fluid intake......We are down to about 2 stops for potty in the five hour stretch!!!!!Woooot Woooot!!!

Ok....DETAILS of the Neurologist visit and the testing.  The Neuro said that the white spots scattered all over her brain looked the same as someone with Multiple Sclerosis.  YIKES!  BUT......that didn't make sense because she has NO syptoms of MS and it is extremely rare for a child this age to have it.  With the amount of demylenation the MRI was showing,  She should have some permanent neurological damage or symptoms.  She had the whole hospital puzzled.  They ordered an MRI of her spine (another place MS or demyelinating diseases would show up) a spinal Tap, some kind of test that measures the metabolism of the brain, an eye exam to make sure there was nothing showing up in her eyes(another are affected by demyelination) and multiple blood tests.  Some of these were tested there and some were sent off to Mayo.  Everything that they tested at CMH came back negative.  They found nothing wrong with her and are concluding that the demyelination is from an old illness.   HOWEVER.....we did find out from the eye doctor that her right eye(the one with the big scar over it) has a scar on it causing  astigmatism.  Her right eye has pretty much shut down and her left eye has taken over.  SO....we have to get her glasses (-.50 on her good left eye....and -2.75 on her bad eye) AND....patch the good eye at LEAST 1/2 a day for 5 weeks, so that her brain will reprogram to use the bad eye.  That should be a real treat with this stubborn little one!  Poor thing!!!!! She can't hear....and now, they are going to take away a good part of her vision!  PLEASE pray for her!!!.......and me!  BUT!!!!!!!!! the good news is, I think we have the go ahead on implants!!!!!!YAY!!!!  Our audiologist is going to start working next week with the insurance company to get us approved, and then order the implants and schedule surgery! 

These pictures tell the story of our visit:( ugh!

Headed in to Childrens Mercy Hosp.

Totally trusting.....with no language to explain what is about to happen....she goes through all that testing, and still trusts us!  Thank you Lord for your hand on this little girl, and us!  There is no other explanation. 
When I see these pictures the song...."Daddy's Hands" comes to mind....Daddy's hands aren't always gentle..but I think they've come to understand....There's always LOVE in Daddy's hands.  They both love their daddy:)

These next few are at the neurologist office (it's in CMH)  They were totally cracking me up!! They had a whole imaginary conversation going on.....with lots of gestures.....but no sound.  You really need to click on the picture, then go through the next 5 pictures really fast!  It looks like it's animated:) They are a hoot!

Dr. Wren is in. Checking her pulse? blood pressure?
Feeling her legs.....she had this done to her.

Checking in to the hospital.  This was the first of MANY MANY cart rides.

Tucked in her bed for the night with her IV pick in.  They hadn't hooked up her fluids yet.  This was the first night.  We had checked in about 6:45....talked to the doctor....had her vitals taken....played in the playroom, rode in the carts....and generally charmed and terrorized the staff.  Then Troy and Iley went home for the night.  The nurse came in and said she had orders to put in the IV.....I asked if they would numb her first like before......she said well sort of...not like they can down in the radiology I asked if I could refuse to have it put in till morning when she went down for her MRI etc.  she said sure you can and that's what I would do if she was mine.  Ok great.  We settle in.....and she comes back.  She said she had talked to Radiology and they said she needed to be hydrated REALLY well to be able to get the fluid they needed off of her spine. She was supposed to have her tests first thing in the morning, so I could understand that.  The IV was put in......first try:).....she whimpered but did AWESOME!  She had a snack about 11:00....then no more food till after the tests.  We passed a night of fitful sleep....she did great, just waking a few times to check on me across the room.  I turned her bed so she could see me past the rail without sitting up.  Then we found out in the morning it would probably be afternoon till they could get her in for testing!!!!!WHAT???  How are we supposed to keep a perfectly healthy 5 yr old from wanting to eat and drink till afternoon???  AND she had to stay tethered to the IV pole the whole time.  I'm thinking.....if they don't have to reinsert this will be nothing short of a miracle!
That's my bed over in the corner.  Better than a chair....but none to comfy!

This was how we visited with most of the numerous doctors that came in to see our "strange case"
We pulled them in wagons....sitting up.....

laying down.......upside down.......

They rode in the cars......
lets try covering it up.......
Scoot over sister.........

Wren rode on top of the car.........

and kicked Iley in the head in the process......WAIL.......
So Iley tucked her feet up and held Wrens feet out.

They rode every thing with wheels......every possible way it could be ridden!  We definitely got out exercise following them around pushing the IV pole, and keeping the line untwisted.  At times it resembled a phone cord more than an IV cord.  She even kinked it once while watching TV and chewing on it....and set off the alarms.

Now WHY would a crabby nurse think this looked unsafe????  Sheesh some people need more kids:)
She rode the IV pole, and another little car with a Handle on it....a lawn mower.....several other little riding toys...pushed a grocery cart with every thing from groceries.....doll clothes...  & a pig with wings. 4:30 they called us down to Radiology....where we waited......another HOUR.  Yep, they sat on this bed for a whole hour!!  They look terribly ill don't they!

Played with all the toys they had.........
.....told each other secrets.....that only they would understand........

Colored pictures.....that one smart nurse with 7 kids brought in for us....two of each page....exactly the same:)

Wren's telling Iley, (showing her by pointing) that the crayon is the same color as her dress.  This is a typical reaction from the drama queen.

Finally they came in and put the anesthesia in her IV.......she was going under here.  I snapped this as they wheeled her out.  Then we went back to the room to wait. for about 2-1/2 hours.

Iley and I went back to the room.....Troy went to put new tires on the truck.  Iley played in the bath tub for over an hour, then we headed to the cafeteria for something to eat.  When we got back, I was reading, and she was piddling around...and i kept hearing a funny shuffling sound.  She had stuck her stickers on the bottom of her feet and was walking all over the room in her "new shoes"LOL  She is a MESS!  Crusty little feet! and LONG toes!
Day two.......More waiting on all the results:(  More riding, pushing, pulling..ugh!!!

They had a craft project in the play room where the kids could make necklaces.

We do EVERYTHING x's 2.......Iley wanted an eye patch too.

At 4:30......WE ARE FINALLY ON OUR WAY HOME!!!!! YAY!!!!!!!  They managed to make off with some gloves:)


  1. Oh wow, what a pun intended. :) So strange about Wren's testing, but glad to hear they don't think it is anything ongoing.
    You know...I am so glad that God chose for these silly and beautiful girls to be your daughters...look how much fun they have! :) Not all parents could handle all that fun. ;) ;)
    Love the pictures, and they made me laugh...especially the one in the wagon where they have their heads upside down...
    Excited you are closer to surgery! WIll be so awesome to see what this does for her. That stinks about her astigmatism. Hopefully the therapy will help.

  2. Oh my goodness, Judy. . . they are just to CUTE for words!!!! LOVE the necklaces, the eye patches, & you GOTTA have the GLOVES!!! :) :) What kind of nurse thinks that a 5 year old complete with IV & pole, riding on TOP of a car, kicking her sister in the face is NOT a good idea???? Seems perfectly normal & OSHA approved to me!! . . . . bet SHE doesn't have 7 kids!! :) If she did she would be to tired to notice, or just happy that there weren't 3 kiddos on the top. . .I will have to say that if it had been the twins, the one IN the car WOULD have bitten the foot that kicked her. . . :) so you have much that to be thankful for!!! Speaking of the twins. . . they are 2 today, Denee said that she will have a 1 yr. old & a 2 yr. old for 8 min. today!! FAVORITE snap from this post- yep Troy made it - the one of him & the girls walking toward the hospital. . . .& you HAVE to love the snaps of them holding his hands. . . xoxo -D

  3. I absolutely love the pictures of the hands with Troy!! What a special family you guys have!! :) Oh I finally figured out how to post on here!

  4. Hi Judy this Auntie, Love Love Love your posts! I have been following since before you went to China. I hope you never stop. I feel like I know your family now more than I have since you moved. I feel like I know the girls too and have never met them!
    Just saying hi...
    My prayers are with you always..give my love to everyone!