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 ....one 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 dept......so 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 IV.....it 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...  & balls......to a pig with wings.

FINALLY......at 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:)

First Day of School

The first day of school for the girls started off a bit rough.  Wren was up with the birds at 7:15  bright eyed and bushy tailed.  She was happy till she signed "dress" (for get dressed) and I said no, after you eat.  But you see, the boys were up, dressed and obviously going some where.  She doesn't care where you are going.....she just wants to go too!  When she went and got her shoes and tried to follow them outside, I told her no......you have to stay here.  She was NOT a happy camper.  She still wasn't convinced she couldn't go and stayed hovering close to the door.  When the boys finally did get on the bus.....with out her....she cried big crocodile tears and let me hold her and comfort her for a little bit.........THEN...she was MAD.  She waved away my comfort and went around stomping and slamming doors:(  and I was thinking oh my....what is Iley's reaction going to be when we leave Wren there...and she goes home with me and doesn't stay at school???  This could be a very bad, rotten, no good day.  Then I sent out an SOS to my prayer warriors, and asked them to PLEASE pray!  Iley finally wandered down about 8 ish, and I fed them both some scrambled eggs with bacon bits and told them to HURRY!!  While I started their bath water.   They both love baths  so it was a record speed breakfast.  I washed their hair and soaped them up and then the battle over who's going to get out first.  Of course I never remember "who" got out first last time, and who was allowed to play a little longer.....so I was signing and saying to them both that we were going bye bye to school.....not a flicker of interest.......so I sign and say bye bye in the car, go to school.  Wren signs back to me a driving motion......I nod and sign yes, bye bye in the car.  She's scrambling out of the tub and would have fought Iley for the chance to get out first.  If the cars leaving ......you can bet this girl will be in it!  We are scrambling by this time to make it to school on time.......we didn't...we were 10 minutes late but they were gracious:)

Wren, hovering by the door in hopes of making a get away.

  My very best shoes on ready to go.

A very sad tigger.

 Bathed and ready to go.  Wren was so happy with her clothes.  She loves to get dresses up.   They had on their new shoes and back packs. 

 Iley looks like she is saying "and now presenting......."  She was amused at whatever Wren was doing:)

 Heading up the sidewalk to school:)

 I told them to stop I wanted to take a picture of them together.  They grabbed hands with out even thinking.  It was so sweet:) The sun was a bit in their eyes:)

 I had to run around and ahead of them to get this picture.  It's a little blurry.....but shows their eagerness.....and nervousness....they are still holding hands.

 Meeting Wren's sign language teacher.  She is not just an interpreter, but a Deaf hard of hearing teacher.  We like her a lot:)  We are praying for her!  For patience, and wisdom to be able to help Wren understand and love language.  She's going through the back pack with Wren and sorting out what stays in this room, and what goes to the preschool room.  (I'm thinking Wren needs a little adjustment with her skirt!! she's about to lose it)

 Wren was very Happy to meet her, she walked right up to her and started smiling and waving her hands around and kind of giggling.  Like she was talking to her.....but not:)  She kept trying to empty her whole back pack and place the items all around the room. Iley was VERY interested in everything going on too!  She was intently watching Mrs. Kay sign.  Then it was time for Iley and me to leave Wren with Mrs. Kay and go home till it's time for preschool.  This was the time I was dreading.  I wondered how Wren would react to me leaving........no worries there!  I signed to her "you stay here with teacher"  "mommy be back"  She waved us off as if we were pesky flies!!!!  Does she have any idea how much we worried about her!!!!!!!  Little stink pot!  Oh pooh go on mom I've got this?????   If you notice....Iley has her back pack too and is ready to stay.  She tried to unload her bag too.  I managed to get across to her that we were going to leave Wren here to learn sign language with Mrs. Kay, and we would come back to get her....eat lunch and BOTH of them would come back for school.

 The schedule....once I feel like they are ready to be on their own is .........Mrs. Kay picks Wren up around 9:15..she's with her till 11:20.  Wren rides the bus home for lunch.  I take both girls back to preschool at 12:30.....they are there till 3:40 and ride the bus home.  The bus ride home is the least scary part since they have both brothers, Harrison and Sherman, and 3 cousins on their bus route with them.

 As we were headed to the car, Cousin Hans...who was at recess.....came running up to us.  He was so glad to see us and tried to Hug Iley.....she wanted none of it.  She was just barely holding it all together...not quite understanding what all was going on.  He was so cute and chatty and tried to convince me to stick around till next recess so I could take a picture of his sisters Evie and Grace too:)

 Don't you just want to scoop him up and smooch him:)  Isn't he the cutest thing! Iley still has her pout face on.  Lil stink!

I remembered to take my camera with me to preschool.......but forgot my camera card reader at home

:( OH BOTHER!  So no pictures of actual preschool.  I stayed with the girls all day today....and probably will again the next time they go*.  They all hung up their back packs and found a chair to sit in.  The girls didn't sit at the same table.....their choice.  Then every one lined up and found out their job, and what circle on the floor to sit on.  This is their spot for the whole day.....lots of "circle time"  then they had play time......and recess.......then drinks and bathroom....and snacks.  They did a craft project.....did an activity with a parachute......then  play time and time to go home.

It was GRAND CHAOS!LOL  Oh my I don't know how their amazing teacher does it!  She's so calm and patient with them all!  I was laughing at the kids they are so funny.  The teacher is trying to explain things and one little girl raises her hand and says "I have a quick question"  Mrs. Betz says ok .....and the girl says " ummm.....me......and my family....um....went to Dodge this weekend"  Then another little girl raises her hand and says"  I have a really short question"   Teacher: Ok but we need to keep moving so really quick.  "Ummmmm......when I was......ummm........like really little.....ummm......my mom and dad took me......um....to Dodge too."  I'm hiding my face by now and Mrs. Betz bless her heart is politely listening..... but at the sight of hands starting to pop up all around the circle, no doubt wanting to tell us about their Dodge City experiences   "ask a question"  .....she quickly said "no more questions now.  We'll all have time later to tell about the fun things we did this summer.  She is a Saint!!LOL  The girls did (not much worse) than the rest of the kids.  It is amazing though what a huge language gap there is in both of them.  It was only the first day, and I know it will get better.....but.....Wren sort of wandered around visiting each group seeing if what they were doing looked interesting....and Iley played a game with one of the teachers.  They really didn't interact much.  Several of the girls were chatting ninety miles an hour and playing nurse and doctor with a whole dialog going.......it's times like these that you really realize how little language they still have.

I put them on the bus at the end of the day with their brothers, then beat it home so I could take these pictures.  Sherman was the first one off the bus, but had to turn around and go back and tell Wren to get off the bus!  I think she thought it would be fun to just ride the whole route!  They said Iley cried when they stopped at the High School to pick up the kids there.  She thought they were getting off, and she didn't see mom.  She was happy to get home.

 Those are big steps for short legs.  Her bag is about bigger than she can manage.

 And a smiling miss Evie:)

 It must have been a long day.......these two look like they are a bit loopy!  Iley can cross her eyes on demand! 

And the rest of these pictures.....If you're still with me.....are just random ones from this week.

Wearing big brother Harrisons favorite hats...nothing is safe around here!

 

I always end up with more pictures of Iley because Wren never stays in one spot long enough to get a picture of her!  She had long headed out the door to ride her bike!

Who knew when I drug this out of the barn that it would become a tea table.....a launching pad......a stage........a house....

Wren had just been in here too.....but by the time I got there with my camera she had......moved on...to the top.....and then off to do something else.