Princess Rainy

Okay so the game plan is to see her neurosurgeon in the morning and probably go home.  The two doctors will keep trying to figure something out for Rainy but this might become part of her life.  I had a good talk with her doctor today, and as much as it hurts and scares us not to know what will come out of this horrible brain diease we know we cherish the time God has given us with Rainy.  The doctor has called Rainy a medical mystery.  That is no joke.  I just pray we get to keep Rainy for a very very long time.

 

Tomorrow we will be home in the evening, and visitors are welcome.  Geoff and I plan on takin Rainy out tomorrow before leaving Kansas City, hopefully find something fun to do with and for her.

 

Keep praying.

Rainy has been moved from the PICU to 2henson still under critical care but just to keep better tabs on her.  As of right now she is sleeping, she was having a lot of pain and when I told her nurse that she had a bit of an attuide, so we didn't like that too much.  Rainy will be here for a few days.  I am praying they have a better idea of why she goes from being silly and running to unable to wake up and getting sick in her sleep.  It is really scary and just hope the doctors can put their heads together and figure it out.  I told her neurosurgeon I was sorry they had to operate on her seeing as the shunt wasn't blocked, and he said that he was glad he did because that way he knew it wasn't that.  He also said it could have just been change in her pressure, but that it made him sad and stumped that she could get as sick as she did.  He is hoping that between her doctor and him they can come up with a game plan to help her.

Well Rainy came through surgery.  The problem is that the shunt was working fine.  The problem is that Rainy has been lifeless and unable to stay awake and vomitting without cause for the last several days.  The best doctors at this hospital are just stumped.  Her normal Neurosurgeon will return on Monday.  Until then she will remain in the PICU.  We need to find a reason for her health being this way.  The doctor said he has only seen a few cases where kids have low pressure in the brain and respond like this, but usually there are other things with it.  Rainy was admitted into the PICU because she was struggling and we were hoping that the answer would be the shunt.  Doesn't seem to be this way.  PRAYING FOR MORE ANSWERS.

 

Keep Praying for Rainy!!!

As of right now Rainy is in surgery.  She is going through her 17th brain related operation.  At this point the plan is as follows:

 

Remove shunt, place new shunt in.  Return her to the PICU and watch her for a few days.  IF she does fine she will go home in a few days.  IF she keeps having problems with vomitting and staying awake she will go in for another surgery in a few days.  That surgery would be to add another shunt to the already existing shunt.  She would have two shunts if this operation doesn't help her. 

For those of you wanting to know PICU is Pediatrics.Intesive Care Unit.  We have never been in that unit before so the rules are a little different when you come to visit.  Only two people (one being either myself or Geoff) is allowed back at a time.  Children are welcome but only if the PICU is calm and only for five minutes.  People MUST wash their hands proir to visiting.  And we cannot receive phone calls unless you have the pin that I gave through the email.  I can receive emails and check them as often as I can.

 

I will let you know when she comes through surgery.

 

 

 Currently we are back up at Children's Mercy Hospital.  This trip is a bit different.  ABout a few weeks back Rainy has been up and down with pain (more then usual) Last week Rainy started sleeping more (at school and home) and had one vomitting moment.  She had no flu or cold signs.  Last night Rainy spent the whole day and night sleeping and dealing with an amazing amount of pain.  When she started vomitting without waking up I was reminded of when she did that last year right before slipping into a semi coma.  My husband and I rushed her up here.  The doctors in the ER didn't like how she was delayed in her neurological response.  They felt she was struggling to stay awake.  They admitted her into the PICU for her first time ever.

Rainy had a shunt tap done today.  Her pressure is pretty darn low.  Unlike a normal shunt patient when Rainy's pressure is low she gets sicker then a dog and can even slip into a semi coma.  When the pressure is high to a point it should put her into a coma she suffers from horrible pain but still is wide awake.  Either way tomorrow we will know for sure.  The doctor wanted to wait and watch.  All day long she has vomitted and slept.  She perked up once the shunt tap was done but fell back to sleep and even slept through an EEG even while they placed the chords on her head.  That concerns me beyond my comfort level.  My biggest guess is her shunt isn't working right.  And I pray they take her in tomorrow and just check it out.  She is too precious to be sitting and "waiting" as of now she is on all of her meds and pain killers.  I am running on an two hours of sleep.  And hoping tonight will allow a few more.

 

I would ask for prayers for all the babies and kiddos in the hospital but also those in the PICU.  There are a lot of serisouly ill children.  I have never been in the PICU only seen people come and go.  This is one hell of a ride. 

 

More to come....

Hello friends,

Update on Rainy, we went up to Childrens Mercy last week and found out that her right eye improved but her left eye got slightly worse.  SO they changed her lens and we will see.  As far as long term goes it will be a waiting game.

Rainy is getting ready to go into Kindergarten and is very excited about it.  She will keep seeing her PT and her OT and her speech teacher as needed.  Her new teacher is very nice and the school nurse is very much aware of her health complications.

Rainy has enjoyed her summer.  She has played in the water alot and loved going to the park and dollar movies. 

Last few weeks Rainy has struggled with pain and seizures but I really feel it has been due to the heat.

Keep on praying for our little angel!

Hello Friends:

Here are the updates:


Rainy is waiting blood test.  She has been having several nose bleeds throughout the week.  BUT she is happy.


Foxy man has been evaluated by a psychiatrist and has been determine that he has several problems that will hopefully be treated through counseling and medication, not a major amount of medication but hopefully enough to help him with the areas he is hurting.  He is very smart and that was something they noted...which I could have told them that...LOL.

Maxwell is going in for the beginning of his testing to determine if he suffered a mild stroke, if he is having mild seizures or if there is something else going on.  Tomorrow is a CT scan.  Then in Sept. a neurology appointment

Those are the updates.......TBC


-Jewels

 Hello Friends,

We are back home.  Rainy's eye exam went pretty much as I thought.  They said that they do not feel the problem is coming from her eyes but from the back of the brain where the extra brain tissue that was on the outside of her brain was.  When they removed the extra tissue they left a nickle size hole in the back of her cranium, where the vision part of the brain lies.  Due to the hole that is there it left the possiblities of complications, ie seizures (check) and loss of vision (check).

As of right now they are not sure if this will get worse or if the problems with her vision will stay the same.  When she looks straight on she has pretty good vision (which would be the front of her brain) the side vision could very well be damaged (which would be where the hole from the brain tissue is) and only time will tell.

The plan is we will put her in glasses (which she picked out and of course are PINK and she looks cute as a bug with glasses)  for three months she will wear the glasses and hopefully that will help.  If it doesn't corrected the problems she will only wear them during school to help her with the stigmatism she has in her eye.

BUT the doctor said he has to be honest the majority of her problems with seeing will not be something that will be corrected through glasses, unfort. if this is really related to the brain damage, brain cyst, brain tissue, there is nothing they will be able to do for her, meaning she could in lose part if not all of her sight.........they are not saying either way on that because their crystal ball was not working when we went in today.

This is not shocking news to me as this was something that the doctors said could happen.  We just added one more Children's Mercy doctor to the mix of all the other doctors and nurses.....LOL.

Please pray for Rainy.

-Jewels

Rainy will be back in the hospital tomorrow.  We will beginning the test to see if she is losing her eye sight.  Keep her in your prayers.

HELLO FRIENDS,


WOW IT HAS BEEN A LITTLE WHILE SINCE I LAST BLOGGED....HAHA.....WELL I AM BACK.


HERE IS AN UPDATE ON ALL OF US.


PRINCESS RAINY-

SHE IS STILL THE PRINCESS OF THIS HOUSE....LOL.  SHE HAS HAD UPS AND DOWNS WITH HEALTH BUT THIS IS NOTHING NEW.  MOST RECENTLY SHE DEVELOPED A CHEST AND HEAD COLD SO SHE MISSED A WHOLE WEEK OF SCHOOL.  AND THE MOST CURRENT THING SHE DID WAS SNEAK OUT OF HER ROOM AND ENDED UP EATING A WHOLE PAN OF BROWNIES....WHEN I ASKED HER IF SHE ATE ALL THE BROWNIES SHE STARTED TO SAY NO AS CHUNKS OF BROWNIES FELL OUT OF HER MOUTH....WHEN I POINTED OUT THE EVIDENCE AGAINST HER SHE ENDED UP TELLING ME EVERYTHING, INCLUDING BUT EXCLUDING ALL THE OTHER THINGS SHE DID WHEN SHE WAS SUPPOSE TO BE NAPPING.  WELL ATLEAST SHE'S HONEST.   KEEP ON PRAYING FOR OUR LITTLE NEUROMUNCHKIN.


HE-MAN/SPIDER-MAN/BATMAN/FOXYMAN

FOXYMAN STARTED AT A NEW PRESCHOOL IN ADDITION TO THE ONE THROUGH HEADSTART.  HE IS CURRENTLY ATTENDING A PROGRAM TO HELP CHILDREN DEAL WITH EMOTIONAL TRAMA AND STRESS.  THIS PROGRAM ALSO HELPS WITH SOCIAL PROBLEMS.  FOX IS TAKING A LIKING TO THE TEACHERS AND HIS COUNSELOR.  HE HAS BAD DAYS AND HE HAS GOOD DAYS.  OUR GOAL IS TO HELP HIM WITHOUT MEDICATING HIM.  WE ARE ALSO HOPING THE PROBLEMS HE HAS BEEN HAVING WILL STRAIGHT OUT BEFORE HE STARTS INTO SCHOOL FULL TIME.  HE IS STILL A LITTLE DEVIL (WHEN NO ONE NEW IS AROUND) AND STILL LOVES ALL THE SUPERHEROS OF THE WORLD.


SIR MAXWELL KNIGHT THE FIRST


WELL I KNEW IT WOULD HAPPEN BUT DIDN'T THINK IT WOULD BE SOOOOOOO SOON.  MAXWELL IS GETTING HIS DEVIL HORNS.  HE  IS A VERY CALM NATURE BABY BUT IF ANYONE TRIES TO STEAL MOMMY'S ATTENTION AWAY FROM SIR KNIGHT HE WILL THROW HIMSELF INTO MY LAP AND PUSHES WHOEVER COMES IN BETWEEN HIM AND I.  I HAVE BEEN ENJOYING JUST HIM WITH FOX AND RAINY IN SCHOOL.  HE LOVES TO HOLD MOMMIES HAND AND GO WALKING ANYWHERE AND EVERYWHERE.  AND WHEN HE THROWS A FIT HE LOVES TO LIGHTLY PLACE HIMSELF ON HIS TUMMY AND WITH ONE HAND A FIST HE LOVES TO CALMLY BEAT HIS HAND INTO THE GROUND.  IT IS ADORABLE AS OF NOW........BUT JUST FOR NOW.


HOUSE UPDATE:

I SWEAR WHEN IT RAINS IT POURS OVER HERE.  OUR KITCHEN HAS NO FLOORING BECAUSE OUR PIPES UNDER THE SINK HAD BEEN LINKING SLOWLY BUT SURELY FOR SOME TIME CAUSING DAMAGE TO OUR TILES, UP CAME THE TILES AND PIPES STILL WAITNG ON REPLACING THE FLOOR.  OUR PLUMBING OVERALL STINKS OVER HERE AND THE BASEMENT STILL LEAKS WITH THE FUN OF THE ELECTRICAL WORK AROUND THE HOUSE STINKS AS WELL.  WE WERE HOPING TO PUT IN OUR HALF BATH SO WE ARE NOT FIGHTING TO USE THE ONE BATH WE HAVE BUT WE HAVE HAD A SIT BACK SEEING AS WE HAVE THE KITCHEN ISSUE TO DEAL WITH AND A FEW SPOTS OF MOLD IN THE HALF BATH.......HAPPY HAPPY JOY JOY (NOT SMILING)



SO OVER ALL IF YOU COULD KEEP US FUN PEOPLE IN YOUR PRAYERS THAT WOULD MEAN SO VERY VERY MUCH.

Rainy is at the hospital (locally) right now.  About 1 am this morning she woke screaming of ear pains (putting a bet on an inner ear infection which she seems to get anytime she is sick) she was able to get some relief through pain medication and although she kept falling back asleep, kept waking up to pain.

By 8:45 am she was running another fever of 101.1 (not to high but high enough) broke with fever medication.  Pain still throbbed from right ear.

11:40 am she ate and took medication going back to sleep until a little before 3pm. 

3pm she woke with pain in right ear and was unbalanced (not uncommon for ear infections, but also with her cerebellum problems)

It seems something is going around as my little boys have had some gunties, but are much better now.

As always please pray for Rainy, it just seems anytime she gets an infection everything is about 3 times worse for her due to the brain illness.  Labs should be done again while she is there and we will be eyeballing those little kidneys just to make sure they are still going down in lab work.

MORE TO COME.........

Rainy's fever broke long enough over the weekend that I was able to get her to her doctor's office and have them fax the request over to the local hospital to draw labs.

Her BUN and Creatinine were both coming down, slowly, but atleast they are coming down.  We will need to keep repeating labs until we  have a few weeks worth of good looking labs to make sure the kidney's keep  on getting better.  So we finally get some good news  (cross your prayers that we keep getting good news)

As soon as we got to the hospital Rainy was dragging behind, she was pretty upset and very worn out from the day.  She perked up when she saw a wishing fountain there at the hospital.  We both ran over to it too watch the water, I think we were both tired because we kind of zoned out on it...LOL.  Anyways Rainy noticed all the pennies in the water and asked me if she had been a good girl enough to make a wish...LOL...I think she earned it, only problem was I digged through my purse and couldn't find any change (broke mommy...lol) as I started to tell her that I didn't have any change my hand  felt a small cold coin, at this point I didn't care if it was a Chuck E Cheese token, just so long as she would be able to throw it in the water.  Well what do you know, a penny with Rainy's birthday year was sitting at the bottom of my purse.  So we  made a wish........we'll keep you posted on that wish if it happens to come true..hahaha.


Rainy was a brave little  angel yestereday.  She walked in, sat in the chair, showed them her arm, and actually we both watched, I told  her not too but she looked at me and said, "mommy we do this all the time." ouch!  Good point.  After labs were drawn we took her temp. and wouldn't you know that little booger had a fever.  Right before they stuck her the fever was still gone, by the time we got home it had creeped back up.  So she is resting right now in bed.

If I had a penny I would have wished to be in bed as well...LOL.  We will be back at Children's in a few weeks to follow up with labs.  For now we have a few doctors appointments in between. awww a fun life we lead.

Please pray for our Angel Rainy as she fights through another infection.  Ongoing prayers for doctors to find an  answer to her health issues.  Thank you God for allowing Rainy to be so happy and laugh when times are rough!

Bad News........Rainy is sick and so there is a big  chance she will not be able to get labs drawn tomorrow because of her being sick the labs would read wrong.  Her neurosurgeon wasn't quiet sure why they wanted to repeat labs since there was a change  in the lab the day we were discharged.  Then he pulled the labs up and saw that her "BUN" was up high again and the Creatinine although lowered was still elevauated.  At any rate we will need to see what tomorrow holds for Rainbow. 

Keep Praying!


Here is Rainy in her new wheel chair.  Thankfully she doesn't rely on it as much but when she has too atleast she has her "princess" chair that is fitted for her.

Okay, SOOOOOO, I am rather annoyed with a whole bunch of medical people.  We came home on the 30th of Dec. with a promise to Rainy's doctor that Rainy would get blood work done that week.  Well due to reasons unknown no one ever called me back from Rainy's doctor's office here at home.  SOOOO I finally got a hold of someone this week and found out that they had just now received my phone call.  After they debated with me on whether I actually called the nurse informed me they couldn't draw blood without the doctor's request.  So we are waiting.........


But Geoff and I bulit a "speical place" for Rainy, Fox and Maxwell in their play room.  It's like a little tent with christmas lights.  I really think Geoff did a wonderful job on putting it together.

Foxy man started counseling and we were told he has Distress Disorder.  Bascially coming from having a sibling who is sick and Fox is trying to find his place amongst all the pain.  He is dealing with a lot for a little boy.  On a happier note Mr. Foxy man will be turning the big 04 on Jan. 28th so he is looking forward to going to Chuck E. Cheese for his birthday.

More to come as we find it out ourselves.


Rainy and Mommy being silly the day Rainy got released from the hospital.  This was at Children's Mercy.

  Rainy in the playroom at Children's Mercy waiting for the next round of medication.

We are still awaiting word on whether we can go home.  Blood work still shows high counts in kidney function BUT it came down atleast a little.  SOunds like we will go home but keep flushing kidney's and repeat bloodwork later this week.  she could get a shunt tap this morning but I doubt we want to do that with a free floating infection.

 

Rainy has dropped 6 pounds but is still laughing and smiling as usual.  My best friend came up last night and stayed the night with me and this put me in great spirits.

 

I will update more.

 

Keep all these babies and children and family in your prayers. 

 

Thank you,

Jewels

Okay sooooooo....here is the update.

 

Rainy's lab work shows signs of improvement in the white counts (back to normal) and in the infection (going down still a little high)

 

But her kidney's have yet to improve.  They actually started getting better but today's blood work showed they jumped back up in the higher side of things and this makes the doctors nervous.  It is more then likely due to the medication and antibotic and lack of moving around.  They will keep flushing her kidney's and then tomorrow morning repeat lab work.

 

If lab work shows improvement in kidney function we will go home tomorrow.  If there is no change or it keeps going up then we will be staying and talking with kidney doctors.

 

 

So we need more prayers everyone.  Rainy has enough going on with her that she does not need problems with her kidney's.  She has had nothing but ongoing needless in her, things shoved down her nose, etc. for the last few days BUT she is still fighting back so this makes me smile.  I know I know I should delight when my kid punches a doctor after he pokes her owies....BUT I do because it makes her a fighter.

 

She is in better spirits today and has been playing in the playroom and sleeping alot as well.  She is still having problems walking but due to the nasty infection her body is battling (we still have no idea where it is coming from) this is not uncommon for her to suffer neurolgoically.

 

So yeah I'm gonna go ahead and ask you to come in on sunday (Office Space 1998) LOL that is my movie quote of the year.

 

Love you all so much, MISS EVERYONE AND ANYONE....LOL.

 

-Jewels

I don't think I have ever "blahed" anything or one in my life but here is a huge BLAH for everyone working against us up here at the hospital.  Rainy had a rough day, she had a rough night last night, then this morning she was doing better but by the time we got done with testing she was really sick again.  This is our day:

 

10pm insert tube down nose (not fun and PS Rainy still bites in her sleep)

 

10:30 begin contrast through tube.  Give 6th rounds of antibotic

 

5am another round of all above

 

8am go to CT only to be turned away due to possible allergic reaction to idoine

11am-2pm nap....THANK THE LORD.

2pm Wait 6 hours from morning to now for her system to be cleared of all contrast and medication so she can get a sonogram done of her tummy.

 

2pm cont. flushing out her kidney's as blood work shows they had begun to shut down.

 

3pm sonogram finally done.  Nothing shows up on sono that would give us any leads.

 

4pm Rainy takes her first bit of dinner and then says her head hurts, lays back and is not able to awake on her own.

 

5pm Doctors and nurses (27 people on three teams working with us) are all alarmed by how sick she is.  They order more blood to be drawn.

 

7:45pm Rainy finish up blood (8 viles of blood) and is now getting urine taken the old fashion way after they teased us and made us think we could have her pee in a cup......GRRR and a big BLAH!

 

WHich brings us to now.  I am sooooooo not sleeping tonight.  I have found the only plus to Rainy being so very ill is that I am able to watch movies without cartoon character saying "under the sea, darling it's better down where it's wetter take it from me..." which Hey I am sure it is but please back off because your happy go lucky way of smoking sea weed and seeing bubbles is not the path I am about to venture down....okay.

 

Tomorrow brings much more fun we get to take a 3-4 inch needle and draw fluids from her shunt (inserting needle with no sedation drugs in the back of Rainbow's head)

 

BlahBLAHBLAHBLAH BLAH.....BLAHHHHHHHH!!!!!

So as we prepared ourselves to go to CT (inserting feeding tube, contrast, etc) we were just now informed that she will not have the CT with contrast instead a sonogram.  Which I can't even start to tell you how happy I am with all the pain we put Rainy through last night and how bad she got in the night combine that with NPO (nothing by mouth for Rainy) until after the sonogram confirms surgery or no surgery.  And PS I am being sarcastic as far as me being happy.

 

We cannot take her down for a sonogram until after 2pm because we injected her with contrast all morning long and part of the night.  So now we need 6 hours of her having nothing in her system.  Needless to say Rainy growls at anyone and everyone who walks in our room all cheerful...LOL...it has come to my attention Rainy isn't liking the happy people of the world right now.

 

We did get an insight on what they are looking for.  It seems that since Rainy is battling an infection somewhere in her body that her tummy has one spot that hurts bad enough to make her double over in pain.  The area is in the area where her appendix are and the drain from the shunt.  They are looking for a hot appendix (one ready to pop) or another cyst (which would be collective fluid in her tummy and could mean that her shunt is not working up to snuf)  Or anything else.  Right now she is getting kidney treatments to flush out her kidney's due to lack of drinking enough fluid and having alot of drugs in her system.

 

Yeah so this has been fun.....LOL....and I will let you know more as I know more.

Rainy Had a rough night last night.  We ended up inserting a feeding tube down her nose due to the fact she wasn't able to stay awake and take the contrast through a cup.

 

The blood work came back with high white count, High inflatmation count, and due to the antibotic her kidneys were starting to shut down.  So they had to stop all antibotics until the blood work in the kidney's go back to normal.

 

We got downstairs for the contrast/CT only to be turned away because the chemical they put in Rainy will cause a bad reaction so now we are waiting in our room for the pre-treatment to be given to her, and they will need to injected her with more contrast.

 

 

Stay tune.......

Rainy Had a rough night last night.  We ended up inserting a feeding tube down her nose due to the fact she wasn't able to stay awake and take the contrast through a cup.

 

The blood work came back with high white count, High inflatmation count, and due to the antibotic her kidneys were starting to shut down.  So they had to stop all antibotics until the blood work in the kidney's go back to normal.

 

We got downstairs for the contrast/CT only to be turned away because the chemical they put in Rainy will cause a bad reaction so now we are waiting in our room for the pre-treatment to be given to her, and they will need to injected her with more contrast.

 

 

Stay tune.......

Rainy just started 5th rounds of treatment.  Still in a ton of pain, cannot walk still and is in and out of sleeping.  Keep on praying we feel it.

Okay so we have seen Rainbow's neurosurgeon.  He is feeling like I am in the sense that we are both wondering if Rainy's appendix might be causing some issues.  SO we will be running some test on that to see.  As far as the infection is going, its going..LOL...she is really tired and hurts alot, she is still unable to get up to use the restroom and me carrying her is just as painful.  Her doctor said alot of times when kiddos with the problems Rainy has, get any type of infection the track line of their shunt can swell up and get red.  So at this point we will have more labs drawn, an sonogram. 

 

Rainy is on 3 antibotics and she takes that every 8 hours.  They finally started her on benadral for the redish purple "radish" look she had been putting out due to the medication.  I feel bad for her she takes medication on the hour it feels, givin she already has a handful of seizure medications and pain medication on top of all the others now. 

 

 

A few people I would like to ask prayers for:

 

A lady from our church is in the hospital (prayers for her family and her)

 

My friend Krissy will be going in for surgery and has been having alot of pain.  Ask for comfort and relief.

 

And all the babies and children up here as well as their families.  It's Christmas season and the hospital is very well decked out.

 

 

-Thank you,

Jewels

We are at Children's Mercy Hospital.  Rainy got pretty ill on Christmas, but we were thinking it was the flu. Turns out this morning we got a little more then we thought.  I went to check on Rainy who was having horrible pain around the area where they pull her shunt tube through on her tummy.  When I checked that area I found redness and a little swelling added to the 103 temp I picked up Rainbow and took her to St. Francis.  As we were waiting Rainy got pretty sick and the blood work came back with a really high level of white counts.  So we were transported up to Children's Mercy where we are waiting to find out if she will need another surgery.  Right now she is sleeping on 3 antibotics 2 pain killers and still running a high fever.  And I am just here waiting....LOL....as usual.  If you would like to call (816) 234-3000 ask for Rainy Cook's room.

 

I will update as it comes to me.  

Well sorry it has been a little while since I have had much to say......I know wow, I must be sick....LOL. 

Rainy received her brand new wheelchair a few days ago, and will use it on bad days.  This wheelchair was designed to meet her needs and has a dinner/work tray to help her on bad days.  It is also the color black and hot pink so now our Princess will be styling if she needs extra help that day.

Foxy man was evaluated by Family guidence center here in town.  His preschool was concerned because of some of the emotional problems he has been acting out.  They informed us that he is a very smart little man but alot of his problems stem in the emotional field.  I don't know why, LOL. not like he is the middle child and has a sibling who is ill and a baby brother who gets alot of attention.  We are going to be enrolling Fox into the therapy playgroup preschool in the mornings and then he will attend his normal preschool in the afternoons.

Maxwell is now enjoying the fun of throwing fits.  It is actually funny for me to watch because he will lay face down on the ground and kick both of his legs while making a fist (but only on one hand) and pounding it into the ground.....I find this highly entertaining for now, and when I stop finding it amusing then I will have something new to write about....hahaha....maybe.

There will be photos of Rainy and her new wheelchair soon.

Well the tooth fairy came on November 9th.  Rainy was alarmed by her little tooth that was "wiggly" until it fell out.  Then she was really alarmed.  After we reassured her that this was all part of growing up and explained to her that there was this magical character named the "tooth fairy" She seemed very at peace about everything.  I can tell you that the tooth fairy had a hard time getting the tooth away from her since she put it under her pillow, and was laying acrossed her pillow, needless to say the toothfairy had a few choice words before leaving the equalivate to a quater, thankfully the children still think pennies is big bucks.

As the tooth fairy was trying to be quiet at 2 am in the morning (she almost forgot to visit seeing as she has a bunch of magical clothes to wash, and to sprinkle her fairy dust on the dishes and in the kitty litter box) she stumbled over a stuffed animal laiding oh so gracefully on her tooth fairy butt....it appears her wings were not working......she looked up only to see Princess Rainy still sound asleep.  As she got up she jumped about ten ft in the air as there were two little eyes watching her.  Mini Max was staring right at her and smiling.  He clapped for the tooth fairy as she danced around the room with a diaper and a blanket for the wee one.  Putting Maxwell back to sleep the toothfairy was counting her blessings that the following day was Sat. and the tooth fairy would be able to sleep a little longer.


Mr. Foxy man has been having some "issues".  we had parent teacher conf. with his head start teachers.  Who would have figured that preschoolers actually had parent-teacher stuff.  Needless to say we started with the "good" stuff first.  Fox is a very very sharp and bright child, I believe he gets that from his daddy.  The problem Fox is having is he has been acting up in school.  This is really not a surprise to me seeing as Fox is really having a hard time dealing with being a middle child, he has a sick sister and a baby brother.  He will take any extra attention good or bad he will take it.  So we started to point system with him.  If he gets good points throughtout the day he gets alone time with just mommy and daddy.  Which is what we want to do anyways but by the time the end of the day comes he is normally in his bed for being naughty.  So please pray for Mr. Foxy man, I know it's not easy on him, it's not easy on any of us at times.  But you learn to count all of your blessings, even the hard ones.


I will be taking a mini road trip with two of my closest friends.  No kids, no husbands, just the girls.  I cannot even being to tell you how badly I need to just get away even if for three days.  I need to be able to seperate myself from being the primary medical treatment giver to Rainy, I need to get away from the horrible but adorable threes, and even a break from an 18 month old who is still having issues when I leave a room.  I just need to be okay with taking a break.  Every now and then Geoff goes on a business trip and will get a few days away, so I look at this as a business trip.......I am going to get some R and R.....so I can  come back and be a much better mommy.....LOL....God Bless.

we had our first follow up treatment today since coming home about 2 weeks ago.  We have nothing new to report.  We are still trying to get pain under control and the seizures have gone down.  The best thing we can do to help Rainy is make her laid down as much as possible and make sure she has alot of water.  She is on 8 medications four times a day and each one of the medications requires her to drink alot of water.  It's like a big circle, if her pain is there then she loses sleep and when you are a seizure patient with no sleep your seizures flare up and when that happens your body tends to get pain and so we repeat the cycle.

On a funny note Rainy woke up the other day and was alarmed by her tooth being "wiggly".  Our little Rainybug is losing her first tooth, and this seem to concern her....LOL.

Rainy will be going in to see her neurologist on Monday.  We look forward to increasing the nerve medication and seeing if that will help with some of the pain she has been having.

Chelsea is back in the hospital and is receiving another round of chemo.  We ask for prayers for her and her whole family.  Prayers the cancer is gone and that the treatments are just used to help keep the cancer out.  Prayers for strenght.

Cole is home from the hospital.  AMEN.  He is doing better but will need to keep up on physical therapy for a while.  Prayers keep going out for him.

My test results came back and my infection is gone and my kidneys and bladder look fine.  The real changelle will be not getting another infection before the first of year.  I cannot have anymore infections or I will need to go see a specialist.  Prayers for that.  Other wise I am back to running and working out with no pain.....makes me happy.

Well Happy Halloween Everyone!!!!!

As you all probably can tell Rainy was a princess, Foxyman was Batman and Mini Max was a chicken (thank you to "auntie" Karen for the costume)

We went trick or treating around the neighborhood and had a great time.  We walked with some friends and a whole bunch of little ones.   Half way through the night Rainbow had a seizure and was pretty wiped out.  But fear not mommy took her pumpkin up to the houses and got candy for our Princess.  We brought the wagon so the kids could have a nice ride.

Needless to say everyone was ready for bed by 8:45pm and the adults stayed up and watched a not so scary movie "Bandits".

Well I went in at the buttcrack of dawn to have two procedures (that is what they call them.....not sure why) anyways done at the radiology department today.  I was NPO from 7pm last night until just about an hour ago.  (NPO- nothing by mouth)

Anyways I had two things done, an IVP and a cystogram (which was a whole lot of fun.....sarcasm) and they will be looking for anything that could be causing problems with my kidneys, bladder,etc.  They will also be looking for anything that would cause me not to be able to eat cheese......okay so I don't really think that was part of the arrangement but that is what I am telling myself.

So I should have my test results later today.  The test(s) made me sick to my stomach and was slightly painful (just because of all the poking done)so I think I am going to take a well deserved nap.....LOL.

-Jewels

I cannot even tell you how excited I am to get to go through another fun test....LOL.

I have been battling a nasty infection (not like a cold) for about 6 months on and off it comes. So I guess you are only allowed to have up to 1 of these infections in a 6 month period before the red flag is thrown up.....and other things....LOL.

So please keep me in your prayers as i get to go to the Radiolgoy dept. to have a dye injected into my body to see what is going on with my kidney's/bladder/overies.

I am a little nervous as the last time I had this test done I got seriously ill. But I am just going to pretend it will not happen again.....LOL. Everything else is fine, except the pain I have been having has been keeping me from running and even working out.......which has been bumming me out.

Overall hopefully nothing is wrong with my kidneys/bladder/overies and I can return to normal life.

OH AND BY THE WAY......my beloved love for cheese is now being put on hold as it has been making me sick....what has this world come to when Jewels is being deprived of cheese??? It is a sick sick sick world.

Much love,
Jewels

PS-  Rainy is doing about the same with pain, but fewer seizures.  We have another appointment Nov. 5th and will discuss the pain from the Nerve disorder then.  She had a bad night where she was up for 2 hours screaming and crying from pain.  The next day she missed school and slept the whole day.  Keep her in your prayers as we keep on looking for answers.

So it's our third day home.  And I find out the kids have no school.  So I am thinking alright I will be able to have them play while I do all the baskets of Laundry.  Last night I got 3 loads done, as I was switching the last load over to the dryer I was sooooo happy to see I only had 2 baskets (prob 3 loads) of clothes left before I would be all caught up.  This is what happens when you live in a hospital as much as we do, not kidding I found clothes that Rainy wore when she was 6 months old.

As I started the dryer I hear......thunk thunk clunk boom.  No more dryer.  This is a dryer that is 20 plus years old and has seen it's last load of clothes.......so now we get one more thing to replace........LOL.  If it wasn't this, it'd be something else. 

Please keep Cole and his family in your ongoing prayers.  As well as our little princess friend Chelsea.  And our Rainbow who will keep on needing surgeries and hospital stays.

So we are  home for now.  This was our first day home.  We got in late last night and needless to say the first thing I did was go running.....man I missed the gym....LOL.

In a few weeks we will prepare for more treatments, but for now we are home. ANd we have our wheelchair order in and after 6 months got her walker only to find out we will probably use the wheelchair more because on the bad days she needs to be resting and not using her energy.....thanks for telling us now....LOL....anyways Rainy went to bed early and I think the best thing she can do right now is get plenty of rest and enjoy our time out of the hospital....for now.

The boys were really happy to see her and me home. Felt good to be wanted by the two little men in my life......goodnight.

Okay soooooooo here is the game plan.  All medications have or will change.  We will get to go home tonight if Rainy stops vomitting and starts drinking more.....I am thinking about drinking more as well...LOL.

We visited with "those other seizure" doctors and now that we have the mean one gone we have 2 new seizure doctors who are very nice.  They spoke with our neurologist back home and have decided to increase all meds, some now some later.  The nerve disorder she has is not determine just yet by a specific name, but combined with her cerebellum disorder this is making great sense to why Rainbow is having trouble walking at times not able to walk at all and why she has serious pain in her neck,head,legs and arms.  They started her a week ago on a medication designed for this diease, and hopefully as time goes they will increase it to a therapy level that will show a great change in controlling her pain.

I also received an apology from the "mean" doctor(s) staff and was informed he lacks a great deal of bedside manners.  Which was clear.  We are waiting to hear from (clearing my throat) pain management people on what kind of methods we could use to help distract Rainy from pain until and hopefully when a medication is found to help her.  I am understanding this will be a problem for her (much like the rest of her brain diease) for the rest of her life.

 

In a few weeks we are suppose to set up another hospital stay (for about a week) to try an video EEG if her neurologist at home wants this done.  This would be a painful thing and that is why I am not eager to do it right now, given she is already in enough pain at times not all the time. In order to catch her seizures they will need to take her off everything (8 total medications) and wait about 3-4 days to see any change.  Last time we did this it caused alot of pain for her. Today she is comfortable.  I think it makes a world of difference to have someone fully hydrated and well rested.  I also explained to the doctors that when Rainy is at home she is more active and by the end or middle of the day she is hurting bad enough she cries herself to sleep at times.  This all makes sense with the nerve disorder. 

 

PLEASE keep Cole in your prayers.  I have been blessed to sit with his family (we are on the same floor) and be able to have someone to talk to and I feel blessed that I know to a degree the doctors they have and the different testing they have to go through.  I pray we see him up and running sooner then later. I pray for comfort and peace for him.

 

Keep all of the babies, children and families in your prayers.

 

So about dinnertime we will be home.  My best friend Karen is picking us up.....so long as everything stays in and down....LOL.

Okay so it has been pretty clear to me that my mommy voice is not working.....cause no one is hearing me....LOL.

Today has been draining and needless to say to darn long.  We started with the pressure test, no signs of increase pressure in the front of her head.  Great.  But does that mean there isn't any pressure in her head???  No, it's just not coming from the front....makes sense seeing as her pain has always stemmed from the back.

The EEG test didn't help us at all.  As they were hooking her up to the machine she had a seizure, and of course she was not yet turned on (her wires hadn't been turned on to the EEG machine)

Then the seating clinic brought her down to get her fitted for a wheelchair that would work for her needs.  Oh and by the way they are putting the outline in pink....lol...Rainy's favorite color.

 

We then had a bunch of doctors (two of which seemed to have a lot of knowledge but failed to review Rainy's chart) by the time we spoke with the doctors I was beyond drained.  Not to mention had been questioned by the mental health agency here about Rainy seeing things, they thought she was hallocnating (totally not spelling that right) they thought she was seeing things because she had mentioned to the pain management people that she doesn't want to be around "magets" because it would cause her owies.  They thought she ment "magets" when in reality she was saying "magnets" or atleast meaning "magnets" but they would have known that if they took the time to ask mommy here what she meant.....needless to say I wasted 30 minutes of listening to this guy talk about the fears of magets....when I explained to him what she meant he laughed.  But kept asking me more questions to which i told him I would be happy to answer when there was patient advocate handy since I didn't feel he was listening to what I was saying.

 

The neurolgoist up here weren't listening to me either.. or so I felt.  I was happy our pastor was with me because needless to say I had a mommy melt down seeing as all day long I was invisible.  Our pastor gave me some good ideas to contact our neurologist back home and talk to him about my concerns.  I felt like the seizure doctors up here was disregarding Rainy's seizures by saying they hadn't caught any on the EEG up here (and out of the 7 we've done 3 have been done up here and none have been caught....but we have EEG's that have been caught in Witchtia and Topeka and all I thought was the doctors up here needed to talk to the doctors back home. ANd I later found out that the doctors did in fact agree that she was having seizures but at the time of the EEG did not see them.  By 8pm we finally got things straighted out.  I told the doctors Geoff and I did not want anymore EEG's done until the doctors were all communcating together. That test is hard on Rainy because they have to take her off of all of her medication to catch a seizure. When the doctors finally did contact her seizure doctor we found out that he had no idea she was even here (she was transported the day he was up in MO at KU medical center treating his patients there, he told the doctors here that if they would have called him like they told me they had done then he would have been more then happy to have come to this hospital and helped get Rainy's situation under control) Seeing as they did not call him until today he was very unhappy....and so was I mainly because I was told he had been contacted.

 

Needless to say Rainy's blood levels showed her medication levels to be low (lower dosage then she could have) and most of them were not even in a "therapetic" level to treat Rainy.  So tomorrow all medication(s) will be increased and then when we are allowed to go back home we will sit down with her seizure doctor and see if any further testing (ie the EEG video) needs to be done.

 

We aren't against the video EEG we just wanted to be able to talk with her seizure doctor.  And seeing the whole reason we are here was because she was non responsive on the day we were suppose to go home (plus she had vomitting and pain) we wanted to be reassured that her shunt was doing it's job....which is still unknown.  As of now  I believe it is working to the best of it's ability.

 

I ask for ongoing prayers for Cole, Chelsea, Kaylee, and Nolan and all the other families and children up here.  I ask for prayers for Rainy and prayers that we both can get some sleep since we both are drained.  I ask for patience. It is so hard to watch your child struggle and then have people come around trying to guess what needs to be done before looking at the big picture.  But I need rest so I can keep up in good spirits and mood for Rainy.

 

Thank you Pastor Joe for helping me figure out who I should call.  I think that helped as I was feeling helpless.  For more updates keep reading

www.freewebs.com/pray4rainy/  under UPDATES to follow closely to her story.

Okay so after a VERY long day, we have a plan of action for tomorrow.  The EEG didn't show anything, but as I said before the nurse who was hooking Rainy up to the machines watched Rainy have a seizure.  But without it on the EEG because Rainy wasn't a 100% hooked up.

So after much MISCOMMUNICATION we finally got a hold of her neurologist back home and he said he had no idea she was up here.  SO tomorrow we should be changing the medications and hopefully going home......crossing our fingers.

 

We also have NEUROPATHY as the nerve disorder but nothing more specific then that.

So all day long we have been in our room a total of about 3 hours.  Seems like we turn around and are being reviewed by another doctor with another "opinion" but no sit answers.

 

On her test results.  The eye pressure test showed know pressure in the front of the brain.  Which is what I assumed would be the answer since alot of the damage and problems are in the back of the brain. 

 

The neurologist up here is literally in his own world.  And I have two other nurses to second that not just our beloved Barbie.  He ordered an EEG and as they were hooking her up to the machine she had a staring off into space seizure.   Unfort. they did not have her hooked all the way up so they could only note it.  And  I wasn't there, I was allowing myself to eat, and now regreting that move.  But the nurses said they saw it and that is something better then just me seeing them.  The doctor said if he didn't catch anything he would like to do a video EEG....uh no.  We have had our 7th EEG today and in all of our EEG's we have 2 times seizures were caught.  They can review her charts if they like, we are sticking to her seizure doctor back home.

The neurologist up here wants to increase all medications.  They also finally told us they are treating her for a nerve disorder (neurolgoical disorder they discussed last week) and said the name but never wrote it down.  I am now waiting to see the Neurologist and hoping we caught something on the EEG.  Which can happen but the ones we've had up here hasn't caught them yet.

 

Now I have got to take Rainy to her seating clinic.  I am missing my family right now.  ANd hope to see my boys soon.

Sounds like Rainbow is going to have a full day of testing and appointments.

 

First up.

 

10:30 am we go down to the eye pressure test.   They put dye in her eyes and can see if her pressure was high by seeing if the eye veins have been under any stress.  That would be a blessing to see then we wouldn't have to do anything  like a shunt test.

 

1pm we go down for an EEG and I shouldn't have any problems keeping her awake until then since she has been having issues with sleep.  ANd thank the good Lord they finally gave her something to relax her enough to fall asleep at 12am.  SHe woke up at 9 am.

 

3pm we leave the EEG (yes it goes for 2 hours) and we head right over to the seating clinic for her wheelchair.  Oh and PS we got the walker, it is at home in Daddy's care....THANK YOU JESUS!!!

 

Then she will get to go back to her room and we will go from there.  I will update you as I go.  All myspace people I cannot access myspace from up here and i am sorry.

 

Keep Cole and Chelsea in your ongoing prayers.

Tomorrow is a day full of testing and appointments.  We have the following all to do

 

EEG (this is to see if they are able to see anymore seizure activities)  We don't like this one so much because getting the glue out of her hair stinks.

 

MRI- See if anything has changed in her head with the cyst

 

Pressure test- they will inject her eyes with dye and should be able to see behind her eyes any pressure built up in the brain.

 

SOmething dawn dawn me about 3 minutes ago, Rainy hasn't had a good nights sleep in a pretty long time.  ANd even nap times have been far and few.  So I am thinking she has some type of issues with her seizures because she isn't sleeping very well.  The reason she can't sleep is pain related.

 

Please keep Cole and Chelsea in your prayers.  Things seem to be looking up, but as you all know things can change quickly, so we ask for ongoing prayers of healing.  Also a little girl on the cancer unit named Kaylee I believe that is her name had her second bone marrow transplant.  And Mr. Nolan (our next door neighbors up here) is 3 months old and on his 6th shunt.  We pray for peace for everyone up here hurting and in need of peace. 

Rainy's doctor finally gave her a sleep aid to help her relax enough for sleep.  Hopefully this will help with pain as well.

we are in the process of starting from the bottom and working our way up.  We are being followed by a few teams of doctors- The silver team is all kid doctors that do general check ups, illness, colds, etc.  The neuro team is our brain people(s) we have Dr. Hornig (who is on a cruise, little  booger) Dr. Green (who is the other nice brain doc) and Miss Barbie (Barb) who is Rainy's favorite nurse (head neuro nurse) and then the neurologist (Dr. Katz aka Dr. Meow Meow), PT and OT (for hopefully her walker and wheelchair) and then the newest team to join Pain management team (never met them but hopefully they can help) a team of 26 total doctors are working with us.

 

We are all putting our "brains" together and trying to get a solution.....lOL...that would be great.

 

To be cont........

.I grrr at people who cannot or will not wake Rainy up to give medication on time.  She is two hours late on medication.  Which means more then likely seizures will flare up.  And she was up until 2 am, "mommy I want a cheeseburger" which means I need to put on my normal clothes and walk down stairs to only be temped myself by their veggie burgers here.....and grrrrr.....so needless to say Rainy FINALLY went to be at 2 am only to be woken up by 4 hour neuro checks.

 

At any rate we are still waiting to see what the next step will be.  Oh and to add to the grrrr they will not give her pain meds as needed every four hours they are making her go 6 hours which makes me mad because we get to watch her hurt.

 

But please keep Chelsea and Cole in your ongoing prayers.  I got to speak with both families and I felt encouraged but at the same time understand that there are some very serious moments for them as well.

Regardless of Rainbow being in the hospital she is not missing a beat.  Very happy very silly.  Our goal is to get her neurolgoical disorder under control and get her pain controlled.  A lot of the doctors believe her shunt blocks and then clears causing her to go into a deep sleep with vomitting and seizures, then the other doctors think the seizure is causing her vomitting and sleeping more.  Either way I would like very much for them to get it under control.

 

I did sneak up and visited with Chelsea who is as sweet and adorable as usual.  She looks great even though she is fighting cancer.  I ask for ongoing prayers for her and her family, I am hoping to see Carey (Chelsea's mommy) soon.

 

I also spoke with Cole's mommy but haven't gotten to talk to her very much.  Hopefully I will soon.  Please keep him and his whole family in your prayers.

 

God Bless,

Jewels

We finally arrived after leaving TOpeka at 11:30am we got checked into the ER (grrr....) here at CMH at 2pm.  Rainy is awake and happy like nothing happend.....frustrating, would have been helpful if they would have had her here during her not waking and vomitting.  I am not sure what the plan is but I know that we are starting from square one.  We are in room 19 on 2 henson.  ANyone wanting to call (816)234-3000 ask for Rainy Cook's room.

 

I will update as I know more.  The plus side is I have a few people I know here at the hospital (not happy they are here but nice to know a friendly face)

 

Please keep Cole in your prayers (a kiddo from our church who was in an accident over the weekend) and Chelsea (who is our little friend battling cancer right now) and of course our Rainy girl.

 

God Bless,

Jewels

I am well aware of the Love for Rainy, but our delay in getting to CMH is not making me happy.  There is a fight going on on who and which hospital should transport her when clearly the child needs to be there now.......but here we are waiting.  I finally got tired and called Dr. Hornigs nurse "Barbie" and she is now invovled and not happy by the delay in actions for a very sick little Rainbow.  I cannot drive her myself because she is one having seizures and two is hooked up to all sorts of machines....that besides the IV is not needed.  Then one doctor had the balls to tell me that Rainy had no reports in her files of having seizures since being admitted into the hospital yesterday....foolish man wants to agure with me, I find it adorable....not going to happen as the nurse stood there and pulled up her charts and showed the record of seizures yesteday and our little still sound asleep Rainbow threw in an extra seizure in front of him......he blushed and said, "I stand corrected." very cute.

 

Okay so I am now going back to the room to WAIT for the fighting to stop.  I might just pull the machines off of her and drive her myself.  Although it's more likely I won't do that.

 

much love,

Jewels

 

Oh and PS Dr. Hornig is not at CMH waiting for her like they told me, he is in Cal. again.  Dr. Green is drinking coffee waiting for her.  Bring it.

The plan was to go home today.  Last night it appeared the IV helped her and she as usual was chipper.  By 7 am pain came back.  By 8am vomitting started back up again and now we are not able to get her to stay awake.  The CT came back with sinus infection even though the blood work showed nothing....just goes back to my statement before, nothing is ever perfect.

 

Because she is not waking on her own and keeps vomitting we will be transported to Children's where our beloved Dr. Hornig is waiting for his neuro-munchkin.  He will also owe me 10 dollars as I said we would be there before Christmas and he didn't believe me...HA....fool, you would think by now he would just know better then to undermind a non-doctor....LOL.

 

Okay so this is my update.  I will write more when we arrive at Children's.  There is talk of helicopter ride......weeeeeee.....this will be the first, we have done ambulance enough times, I think after 16 brain surgery Dr. Hornig should come to us, but if we get a helicopter ride I will be praying the whole way....hate flying, nothing natural about it at all.

 

Love Jewels

 

Ps.  If you want to send anything to Rainy, she has puked on everyone of her stuffed animals, let's face it the dog didn't have a fighting chance.  The cats all are in the "sink aka Bathtub" and they are not happy.  I also have no shampoo or conditionar seeing as Stormont Vail has no showers for mommy or daddy.  And ooh lalala and yummy balls (lotion and mnm's) are always Rainbows favorites.

Rainy's blood work returned with no signs of infection, flu or cold symptoms, This is somewhat disappointing, because at least if she was sick there would be an explanation for her increased seizures.  They catheterized her to get an accurate urine sample for testing.  Prior to catheterizing, she suffered a seizure in the presence of her nurses, which benefits the nurses as they were able to see first hand what is happening.  She has been eating ok, but still remains dehydrated.  As of  7:00 pm, we spoke with her neurologist.  He has been in contact with her neurosurgeon and they are both stumped.  They both agree that she obviously has a neurological disorder, however finding a treatment option, has proven more difficult than expected.  After speaking with the doctors it is my understanding that they are considering sending her elsewhere, in hopes of finding a new doctor with a new (and possibly) more definate opinion.  However, after 8 different opinions we are growing tired of "second opinions".  The one thing they seam to agree on is that her cyst has caused irreversible damage.  Due to the cyst's location (brain stem cerebellum) this could be the cause of her neurological problems.  I will post more tomorrow.  As of now, Rainy is resting comfortably and as usual she remains in good spirits.

Please keep Rainy in your prayers
~Jewels

Rainy was admitted into Stormont Vail at 2 pm on Monday Oct. 15th.  Reason for admission is due to increase seizures, with vomitting of bile, pain in legs,arms,neck and head.  She has been struggling with pain for the past year now and walking is effected by this.  Currently her team of doctors (including neurologist, neurosurgeon (up at Children's) and normal doctor) are treating her for a neurological disorder.  Their goal is to determine (if they can) what kind of neurological disorder she has.  Right now I am in the library as she is getting more rounds of blood work (to check for cold or flu since she is stuffed up) and an IV started.  They are then taking extra care in ensuring the cyst and ventricles have not had anymore growth, by doing an CT scan.  When she returns from that they will then start her on some heavy pain medication through IV and try to get her more stablized regarding pain and seizures.  Rainy is not feeling very well but sense of humor is still very much intact.

 

For anyone wishing to visit or call we can be reached at Stormont Vail Hospital (local due to her neurologist being in town) (785) 354-6536 (that will directly connect you to us) and if there is a problem with that number please call (785) 354-6000 and ask for Rainy Cook's room.

 

I will do my best to update this website as much as I can, but given that I the libray is "forever away" from our room calling are room will probably get you quicker updates.

 

(this has not been spelled checked due to the stupid computer not allowing me to do this.)

 

-Jewels

Rainy will be admitted into Stormont Vail Hospital today in the children's ward.  She is having increase seizure activities more then likely cold related.  Also ongoing pain in her body, more then likely seizure related.  I will do my best to update this.  If you would like to call us with more information please wait until 4 pm and call (785) 354-6000.

Please check her website for any updates

www.freewebs.com/pray4rainy/

Rainy will be going up to Children's Mercy Hospital on Thursday Oct. 18th to get fitted for her own wheelchair.  The wheelchair she has now is a rental.  We pray for safe travels and a quick PT visit.

Hello Friends,

Next week we will be going back to the hospital to go through some pt stuff with Rainy and get her refitted for her wheelchair.  the wheelchair she has now is a rental.  I will post more updates on her web so please look for the updates and needs on there.

thank you,
jewels


www.freewebs.com/pray4rainy/

Okay so I just got off the phone with the doctors office and the new medication order for seizures and pain is around five hundred dollars and medicaid is not wanting to cover it until they get the reason why she needs it.  I guess it is a "serious" drug I didn't realize the other 6 medications she is on for seizures and chronic migranes had nothing to do with serious.  At any rate please pray for the medication situation and that we can get it approved, we have no money and no money to pay every month for this new medication.  Her medication(s) all total close to 1500 hundred dollars (once you add this one in) a month and it will go up since all of her medications have been increased.

So let's review the day,

Rainy has been through hell on earth with blood work (and will repeat this in 2 weeks)

Rainy's doctor is saying she does have a neurological disorder but doesn't know what exactly it is and how to treat it (and by the way seizure disorder, cerebellum disorder and hydrcellphelus are all neurological disorders)

Rainy's walker which was due to be here in April is going to take another week to get in.

And now medicade wantes to deny her medication and coverage.


yeah, pretty sure I am going to go to bed now.

-Jewels

Hello Friends,


We took Rainy to the neurologists and number of new concerns.  First Rainy has had an increase in her seizures, my concern was the VNS was not working as it was before her recent operation.  Well I was right, the doctor said the VNS settings were right but it was acting "screwy".  So he reprogrammed it and we'll go back in a few weeks to see if it fixed itself.   If not a replacement will be in order (VNS has a lifespan anywhere from 2-10 years before replacement is needed, she has had her's for a year and a half but it was sit to a higher setting which would use up the battery faster.)

The next big concern.  Rainy for almost a year now has had ongoing pain all over her body, from her head to her toes.  Just ongoing pain that cannot be relieved by pain medication as strong as morphine and fentaynol.  We have tried so many different pain medications just to get some type of relief.  Finally they gave her a pain medication that would help her "relax" enough to fall asleep.  Speaking with the doctor it is clear that Rainy has some type of neurological disorder, but which kind is going to be the tricky part to figure out.  The methods to finding it out is rather painful.  Today the first rounds of testing was done.  They took so much blood from her she almost past out.  The problem was they couldn't get a vain, they poked 8 times (which is better then the 36 times we had done before) and then broke a blood vessel by accident, they said it would be tender in the arm and bruise.  Then they had to get enough blood work so they could run all sorts of test.  Rainy got pretty sick during this but kept smiling and talking about her poppy and nana's.

The doctor is looking for a number of things in the blood work.  one is to figure out what kind of neurological disorder this could  be.  The other number of test he is running he would not say because "he didn't want me to worry"  I love that......like I am not going to worry regardless.

This has been a rough day for us and I think I am in the "numb" stage right now.  I am not shocked that they are thinking a neurological disorder is what is going on, but concerned they will not be able to find a pain relief that would work enough to give her a good quality of life.  I know warm water has always helped but not fixed the pain.

They also have increased and added a new medication.  The new medication has a bad side effect (as do most) and it could make her come crossed in a "crippling" way for the first few weeks of being on it.  But thankfully our walker is suppose to be here by 1pm today and her wheelchair will help in all of this.

Alot of you have asked how you can help our family.  Prayers are always good.....better then good.  We have a website dedicated to Rainy and for her family and friends to keep updates on her.  Someday soon we are going to need to fix our front porch to install a deck with wheelchair ramp so if Rainy keeps going down in health she will be able to get in and out of the house without us carrying her.  We have alot of needs and I am just putting them to prayer as they are not easy to come by.

The test results will take up to two weeks and then we will hopefully have a better idea of what kind of disorder we are looking at here.  I am praying they will find the problem and the cure for it as this has really taken it's toll on our daughter's body and life.

Keep on praying for her.  We are still having her bonfire on Sat. that has not changed  I am glad we decided to go ahead with it because after today's hospital visit I think this is going to really cheer her up.


www.freewebs.com/pray4rainy/



Thank you,
Jewels

Bad weekend for both Rainy and Julie........


Okay so we are home......finally.


Rainy was sick the last few days with seizures.  She was playing for a good chunk of the day, last night was bad that she couldn't eat dinner without crying and having seizures.  She played in her wheelchair and even a bit without, but mostly had to be in her chair.  On the way home she had a handful of seizures.  So please keep her and the pain she is going through in your prayers.


I had an interesting day.  I have had alot of pain in my tummy thought it was just stress.  Today I was getting ready to tape my friends wedding when I got dizzy and almost passed out from the pain.  I waited through the wedding got it filmed and all, and then gave the camera over to Geoff.  Karen took me to the Oklahoma City ER were I found out I had a swollen bladder (the lining of the bladder wall is swollen).  So after 3 medications were order for me we went back to the wedding and got Geoff and the kids picked up and traveled home.

Needless to say I am in pain and Rainbow is in pain so we will not be going to church tomorrow......Fox and Geoff will be there.


I am blessed we got home in one piece. 


-Jewels
Rainy and me on Sept. 14th 2007.  Nice cool night in the front yard.

(Rainy and Mommy on Halloween '03, Rainy went as "rainydaybear" aka "grumpybear" mommy was a pregnant monkey (with
Baby Foxy in her tummy).)
Rainy is having a rough day today, we ask for prayers as we are heading out of town tomorrow and we need a healthy Rainbow.  We are also praying that her walker will come either today or early morning tomorrow so we can take it instead of the wheelchair.

For more updates and news please go to

www.freewebs.com/pray4rainy/


Thank you,
Jewels



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Hello Friends,

First thank you for praying for our friends who little girl Chelsea is still in the hospital receiving Chemo treatments.  I encourage you to keep her in your prayers, it sounds like things are going pretty well.  Please check out her blog page at


http://www.cbranam.blogspot.com/



Rainy should be receiving her walker this week........FINALLY.....But I will not believe it until I see it, because they have promised us now for 6 months.  Please keep this situation in  your prayers.  Also Rainy has for almost a year now been having chronic pains all over, usually after a seizure.  We should have blood work done soon.


Foxy is doing great at school.  I think with him being in preschool it really helps him have his own special focuse and it keeps his mind away from Rainy's illness.


Maxwell is growing like a weed.......I wish he'd stop....LOL.....and he is  still our calm  after the storm.  He has been waking up when Rainy is having seizures or getting sick so we pray for this situation as he is still too young to move in with Fox.  But after their wrestling match today I think Max could hold his own.



Thanks for your ongoing prayers and support.  Please check out Rainy's website

www.freewebs.com/pray4rainy/


For updates, prayers, photos, and overall Rainy's health information.  And make sure to sign the guestbook, Rainy has loved the comments.


-Jewels