Princess Rainy

After almost a week in the hospital for Swine Flu and Strep throat, here is the latest on Rainy:

Last night was rough, Rainy was suppose to keep up with IV therapy, but last night her IV had other plans and it broke her vein, so instead of putting another IV in we are just pushing fluids.  Rainy threw up but we really think it was because of ALL the medications and antibotics upsetting her stomach because right afterwards she wanted bday cake (Karen's bday was yesterday) and she couldn't eat much of it but had a few bites before she started hurting again.
 
Today I will get to bring Rainy home, BUT, she is not going to be allowed to go trick or treating this year because even though she is going home she is still pretty sick. Rainy will also have to come back to the hospital in three days to be examined, she will not be able to do her weekly treatments this week because of the swine flu.  Rainy has 5 more days of treatments for her strep throat and the swine flu meds they are giving her (it's a normal flu med that doesn't cure the swine flu or flu but takes some of the symptoms down a few notches)  Rainy will not be allowed back to school for atleast another week (could be up to two more weeks because this swine and strep is really taking it out of Rainy) Rainy is still weak so she is still unable to walk and to go to the potty without her diaper.  She is still struggling greatly with pain and over all still feeling lousey.  But the doctors are afraid if we don't get her out of here she is bound to pick up something else.  So they will send us home with gowns and gloves and masks for her.  The boys might have had the swine flu, but we are not for sure, if they did they have really bounced back, the doctor said with they symptoms they were showing it sounds like the swine flu but without a test it would be hard to say.  At any rate it would be better if they have already had it because the chances of them getting with Rainy around is great. Of course it would be even better if they didn't get it at all.

Currently Rainy is at Children's Mercy hospital, where she tested positive to the H1N1 flu and to strep throat.  Rainy is a high risk patient because of all her other health problems.  Please remember Rainy in your prayers as she is battling alot and it is taking alot out of her.  Thank you very much.

I took this picture of Rainy today.  Last night was a really rough night for her.  All the kids were in bed, but because Rainy was so sick we kept her on our bed, when I went back to check on her she was sitting up in the dark with no light on.  I have never seen her do this. I called to her several times and she said nothing, she just kept rocking (not a fast rock just a slow one that reminded me of a type of seizure she has) Geoff came in about five minutes later and she came through, but was hurting and was tired.  I stayed up with her til 3 am, she finally fell asleep.  This morning she woke up smiling.  It was a great smile, made my heart smile (that's our little saying between her and I) She felt so good that Geoff and I really wanted to be able to take all the kids to the park, plus the weather was just perfect.  At the park Rainy started to get tired, so I had her sit down.  As she sat there she told me her head was really hurting and so was her neck and arms (this is pretty common with her brain disease) so I sat next to her.  She put her head down on her hands and the sun hit her just right, almost like Heaven was shining down on her, so I wanted to take a picture of her.  I told her to smile, and then I stopped.  I took back what I said by saying, "You know Rainy if you don't feel like smiling you don't have to, I know you have owies right now" 

Rainy got a huge smile on her face and said,

To me it was one more reminder that Rainy serves more then just the purpose of being our princess, she has a greater purpose, God has a special purpose for Rainy.  At times I look at her, as I did last night, and cry silently to myself as the pain of watching her hurt and get so sick is too real and at times to hard to watch (although I keep watchin) and the loneliness comes when people around you who do not know what it feels like to watch your child suffer (we are gong on 7 years of it now) walk away or turn their backs on you because they do not know how to talk to you (the parent).  I spoke with a pastor once, maybe one of the best pastors I have ever had the honor of being around and hearing his sermons, he once told me during counseling, "when people have terminally ill children or adults that they care for, they go through about six to seven different emotions and when that person finally passes the six/seven steps stops (of course they then go through another cycle of emotions some the same) but when you have a chronically ill child or adult the emotions recycle themselves over and over again.

The truth of the matter is, on Rainy's bad days I am strong (sometimes I am weak, if I have someone around to allow me to step out of the room break down and come back) I am in fight mode, I am ready to conquear anyone..lol...but on her good days those can be the hardest at times for me, because although she is feeling good that day, I am processing the very real possibility of her outcome, or processing the real truth that today is good, but tonight can be bad and tomorrow can be worse...but the pain will be there whether I smile or not...so I am going to smile, and so should you.

Okay okay...so I have taken some time off from writing anything....eek...sorry.  Here is what is happening around here:

Rainy still struggles with stomach pain (yet to be figured out) and just had another surgery for tubes in her ears.  Throughout the summer she spent about 60% of it inside resting.  But she enjoyed the times outside and when we all got to go do things together.  Rainy keeps going to Children's Mercy on a weekly basis for treatments, and this summer her auntie Karen and I (mommy) found plenty of fun and free things to do while we were at the hospital waiting treatments.  There was the big sprinklers in front of crown center and Kaleidoscope  to name a few.  We had an over all good time.  THe treatments are to help teach Rainy's brain to communicate to her body, and they can be pretty intense at times, most of the times she comes home in pain and sleeps it off for a few days.   Rainy turned 7 on June 4th.  We had a party but she had been so sick that she was pretty out of it.  She doesn't really remember even having friends over (that broke my heart) but we were just thankful for another year of life.

Two days ago was the first day of school for Rainy and Fox.  Fox had a great day, he really enjoyed his teachers and made new friends.  Rainy wasn't feeling well when she first woke up but went to school to try it out regardless, needless to say I got a phone call about 2 hours after dropping her off to let me know she had gotten sick and needed to come home.  It wasn't a cold just ongoing struggles with her health.  Today seemed to be much better for her as she made it through the whole day.  I cried on the first day as I watched Fox take Rainy's hand and walk her to the line of their classmates, made me feel un-needed...lol...but I still have my three year old who is very much a mommies boy and loves being with me every second. 

On a very very sad note, our beloved kitty Mr. Squeakies aka Mr. Chuckums passed away right before my birthday in July.  He was a very sweet kitty and we only had him for four years, but those where good years.  He would wake me up in the middle of the night when Rainy had a seizure and would stay with Rainy when she would get really sick.  Right before he passed away, Rainy got real sick and slept for 72 hours (we would wake her and she would throw up...no one really knew what to do because she didn't have a cold) during that time he never left her side.  Very much missed.  We got a new kitten (to join Squidly our older kitty) Cuddles, and although she is fiesty and on the go, she stays with Rainy at nights.  Hopefully the kitty will develop a sweet nature...lol.

The upcoming year is unknown.  Rainy will keep going up to the hospital on a weekly basis (see Rainy's bracelet sale to help) and Foxy man (although in a regular school now) still goes back to the therapist and pysicologist every month as well.  Max is getting checked out for some concerns.  And I signed up again to help out as a room mommy.......we will see how this year goes.  More to come....(I promise to write more)

Hello Friends,

Rainbow has been having a great deal of pain with her ears so after getting into contact with the specialist up at Children's Mercy they have put her on the list to have her surgery on May 27th to insert tubes in both ears and to take a look around in her ears.  I am trying to get a room at the Ronald Mcdonald house the day before (May 26th) since there is all the pre op stuff to do as well as her normal round of treatments.  Please pray that everything will go smoothly for her that week.

Her birthday party is planned for May 23rd so we hope all of you will be able to attend.  Again (Sat. May 23rd from 11am-1pm we are having friends and family over at our house.  We are doing a pot luck lunch and will have games and cake for the kids.  Instead of a gift we are asking for one side dish.  There will be hot dogs and punch.  If you would like to get Rainy a gift please remember she cannot be around magnets and her favorite things are princess things...but please do not feel like you need to bring a gift or even a side dish.  Rainy just wants to have her friends and chocolate cake..lol..pretty simple kiddo.)

Thank you for your support,

Jewels

Hello Friends,

Rainy had a whole week of appointments from Feb.23-28th.  Durning the last appointment the doctor and I discussed Rainy's vomitting up blood (happend in the early morning of Feb. 28th) the doctor had wanted to do a scope on Rainy but didn't think (because of her throwing up blood) that waiting 4 weeks would be the best idea, he said that if he hospitalized her then they would be able to do it Monday March 2nd.

So we have been here over the weekend waiting for the latest surgery (they will need to do this in the OR due to her medical conditions and history).  While we are waiting we have a 24 hour nurse in our room (which we have only had before in the PICU) to keep an eye on her vomitting and other problems related to her sever pain in her stomach.  After the surgery we will be able to get rid of the nurse (which I would normally see as  a good idea but seeings as they aren't paying that much attention to her ie needing a new IV before five am in the morning, it seems we are more like animals at the zoo being watched for entertainment purposes) Then again we have never been on the GI floor so it is hard to tell what is protocl.

At any rate the vomitting has stopped and only occured once.  The scope they will be doing is going in through her mouth through her stomach and cutting pieces of her intestines and stomach and whatever else they would like to be able to run biopsys on them.  Hopefully afterwards and she is stable we can go home.

On a sadder note, our friends are in great need of prayers and over all peace as they just lost their newborn baby.  God be with them all.

Hello Friends,

It has taken me until today to post this note about Rainy just because I was feeling down and discouraged.

Rainy started phyiscal therapy up at Children's Mercy yesterday afternoon. And as we were going through the phyiscal therapy her therapist kind of stopped midway and had Rainy go play with Karen, so she could talk to me.

The therapist said that Rainy's body (as we know she has chronic pain) suffers from the several different brain diseases and one of them was a form of spina bifida. Part of the effect (that we really haven't seen until this last year) is having a limitation of movement in her trunk,legs,and feet (so far we still need to see how her upper body is) And even though I have done ongoing stretches with her and with her legs, we don't get far because of the pain she feels.

Hypersensitivity Disorder (causes failure of the nerves that carry information to and from the brain and spinal cord. This produces severe pain, loss of sensation, and inability to control muscles. In severe cases, pain can be caused by wind or even clothing touching the skin.)

In her case the cause is due to the many brain diseases (the cyst, seizures, hydrocephalus, cerebellum disorder, and the encephaloceles (encephaloceles refers to defects in the development of a fetal structure called the neural tube. The tube fails to close completely during development of the fetus, resulting in portions of the brain and its surrounding membranes that protrude from the skull in sac-like formations. Often, normal brain function is impaired and children with encephaloceles experience delays in development.)

The encephaloceles is a form of the spina bifida family although Encephalocele is less common the spina bifida (Encephaloceles occur rarely. At a rate of one per 5,000–10,000 live births, an encephalocele is less common than spina bifida)

All of the brain problems she has will cause her to be delayed which she is, will cause her to suffer from sever pain (which she does) and from several doctors opinion might in the long run cut her life short.

To top it off the last few months that she fought for her life in the hospital only caused us to step backwards with her school work and with her over all ability to get through a full day (about 50% of the time she wipes out after 30-40 minutes of playing or being active)

The plan is to drive every week to Childrens Mercy in Missouri to do intense physical therapy and hopefully warm water therapy (if you remember we tried this at Cappers before her health got a little bit worse) now we will need to be at the hospital atleast once a week (some weeks such as next we will be going there a few times) Eventually working Rainy up to 3-5 times a week in warm water therapy (hopefully here if we can find a place with me trained to work with her in the water) I will be working (as I normally do) hands on with her therapist in the water to help me to become trained.

The part that breaks my heart is just knowing that yes therapy is what she will need and for the rest of her life, but it won't cure the chronic/hyper sensativity to pain that she has, only help manage it. That is something I never will be okay with. And although life could be worse and wasn't promised to be fair....it just isn't fair.

So the bracelet sales are going to be a big big deal as far as getting the funds to travel every week up to the hospital (which we have been doing for the most part since Jan. 13 when we came home.) If you know anyone who would like a pink bracelet let me know. I am collecting a few more checks from all you outta towners and I will be hitting the post office of Sat.

As for where Rainy is in terms of recovering from the latest hospital stay, she is doing better with each day, but from her doctor's stand point she still has a road ahead of her. And it will take awhile to get her back to "rainy normal" and we might not or we might get her back there. Feb. 25th will be a big day for us, we pray for that day, we hope that day will tell us more about what the shunt is doing and what is causing this stomach pain.

A side note: A lot of people do not know, but Dec. 3rd Rainy was hospitalized at a local hospital and was malpracticed on. That is why she got as sick as she did. We are not going into any more details as of now, and from a legal stand point we will need to wait 6 months before making our final move. I would like prayers put towards this situation. As much work as we (her family and the doctors up at Children's) have done in the last 6 years to have something like this happen (that could have been VERY much avoided) hurts to no ends. We almost lost our daughter from the seriousness of her complications, and from her doctors up at Children it was uncalled for and a miracle she pulled through. We ask for prayers and peace.

Thank you,

Jewels

Pray 4 Rainy Bracelets can be purchased through me. Please email me with your order. Make checks payable to the Rainy living Expense account. All funds raised goes back to helping Rainy.

Rainy went in at 11 and was sedated at 11:30 am.  She struggled with the pressure (the doctors clamped her EVD shunt on the outside 3 and a half hours before surgery started, they only wanted 2 hours but they ran late and caused stress on Rainy.)  She started struggling about an hour after the shunt was clamped and started getting sick there after.  I held her in the pre operation room and she fell asleep.  They took her back after she was stable from vomitting.  The new shunt has been placed and now we wait.

Two hours later she is out.  She came through her 23rd brain related surgery. I am anixous to see her.  Prayers for her.  Prayers for baby Hunter and family as the doctors think he might pass.  Thank you, Jewels

Well due to the new growth of an abcess  in her stomach and the old abcess still there we as you probably guessed are not going anywhere any time soon.

Today marks Rainy's 22nd brain related operation.  They need to replace the EVD (externalized shunt) with a new EVD (and they will keep doing that every 7-10 days ) until the stomach is 100% cleared.  Once we get an all clear the neuro team can put the shunt back in.  Rainy really really lives off of the shunt working, as yesterday they saw as soon as the shunt kinked the pain got out of control and vomitting started.

Another problem is Rainy's teeth in the front (the ones she has already lost) are lose and trying to come out.  You are only suppose to lose your baby teeth once, so the doctors are concerned but can't do much until everything else clears.

So at 1pm today the neuro team up here will be doing her 22nd brain related surgery.  We should be meeting with all teams of doctors today to find out a new game plan.  Because of the new growth of abcess (location next to her uterus) there is obv. concern for her health.

Rainy is having a horrible amount of pain.  Her already challenging life with the brain diease and neurological chronic pain is about 3 times as much because of all the other challenges with her health.

More to come....

Well due to the new growth of an abcess  in her stomach and the old abcess still there we as you probably guessed are not going anywhere any time soon.

Today marks Rainy's 22nd brain related operation.  They need to replace the EVD (externalized shunt) with a new EVD (and they will keep doing that every 7-10 days ) until the stomach is 100% cleared.  Once we get an all clear the neuro team can put the shunt back in.  Rainy really really lives off of the shunt working, as yesterday they saw as soon as the shunt kinked the pain got out of control and vomitting started.

Another problem is Rainy's teeth in the front (the ones she has already lost) are lose and trying to come out.  You are only suppose to lose your baby teeth once, so the doctors are concerned but can't do much until everything else clears.

So at 1pm today the neuro team up here will be doing her 22nd brain related surgery.  We should be meeting with all teams of doctors today to find out a new game plan.  Because of the new growth of abcess (location next to her uterus) there is obv. concern for her health.

Rainy is having a horrible amount of pain.  Her already challenging life with the brain diease and neurological chronic pain is about 3 times as much because of all the other challenges with her health.

More to come....

I waited for us to talk to all four teams (that is like 27 doctors and nurses all together).  So far the 6 abscess in Rainy's tummy has cleared but one little one is still in between the rectal and bladder.  With anything in her stomach the shunt has to stay out.  So here are our options.

1. If  IR (radiology) thinks it is safe they could put Rainy out and drain the absess from her stomach and then run labs on the abscess.  If the abscess shows any type of infection or growth then we can't do anything but wait it out with medication for another 2-3weeks.  If the abscess is free of growth or infection then we can have a new shunt put in as early as Tues. or Thursday and then until the medication treatments are done we will go home around 8-14 days later.

2. If IR decides that the abscess is too difficult to get to, or they would rather let the medication clear it then we sit here for 2-3 weeks more.

3.  We have two options with the shunt.  When it is able to go back in we can either go back to the normal spot or go through the heart area.  Neither one of us think it is a good idea given Rainy's track record with shunts, and the last thing we want to do is involve the heart.

As for the infection in the CSF (spinal fluid) and shunt we have gone 3 days with no infection showing.  We knew that we had past the 48 hour marker yesterday but wanted to speak with the doctors before getting excited.  If we keep making progress we are looking at being 90% done.  If we back slide or have any complications we will not be looking at 90% but more like 75-80% done.

So we are happy with that news.  I also want to say Merry Christmas to all of you.  My husband and boys got a room at the Ronald Mcdonald house and will be here until Friday night.

Thank you to everyone who sent gifts, cards, visits, CHRISTMAS TREE (talk about getting strange things in the mail, I didn't know you could mail a Christmas tree)  Thanks for the phone calls.  But most of all for the prayers.  I would love to think everyone one on one but I just can't.  Just know we are beyond blessed this Christmas and my only Christmas present that I asked for was another day another second another moment with Rainy and to have the boys here.  What a great Christmas.

May the Lord bless you all,

Jewels

Prayers for the following families:

Paige is a beauitful almost teenage little lady.  This family was a few doors down from us and are just a blessing to have met.  Paige and her mom and dad are traveling home today.  They will keep coming back for treatments kind of like Rainy does.  Prayers for Paige and families safe travel home and may God keep them in good health.

Twins Calabe and Junior have been moved to the fifth floor. AMEN but Junior has a cyst on his kidneys and although small this could be serious.  Prayers for this baby boys and their family.

Hawk, I haven't met this baby boy but I know from his grandma and parents he is a fighter.  I believe he got moved out of the PICU and I pray all is well with him.

Hunter is still fighting.  Keep on fighting Mr. Hunter.  Blessings to his mom and dad and whole family.

The two little girls with half of a heart. Prayers for Sasha and Licia.  Keep on fighting baby girls.

I met a family last night with a 2 day old baby with heart problems.  They are from my home town and that is what struck up our convo.  I forgot the baby's name but I ask for prayers as I know God will know who I am talking about.

And I pray for Lihla...I hope I am spelling that Right.  She is a few days old and is in the PICU. Prayers for her family and her as well.

I just wanted to go over a recap to clear up any confusion.  There have been ALOT of questions and I want to address all of them while i am still awake...lol.  I hope I answer these well, and if you have any other questions feel free to write or call.

1.  Does Rainy have Viral or bacterial meningitis?

That is a great question.  Rainy has Bacterial Meningitis which means she CANNOT get anyone sick.  But if you are sick you can add to Rainy's battle.  Something as little as a head cold can really take her further out of commission.  That is why we request everyone who would like to come visit to make sure the following is done:

1.  Do not come if you have or have been running a fever within 24 hours of a visit.

2.  Do not come if you are vomitting or having diaharea

3.  Do not come if you have been exposed to anyone of any age who may have been sick.

4.  DO feel welcome to visit but be sure to wash your hands when you come in to the room, there are hand cleaners by the door.   We love the visit but we need to keep Rainy 100% free of anything else.

VIRAL MENINGITIS is usually relatively mild. It clears up within a week or two without specific treatment. Viral meningitis is also called aseptic meningitis.

BACTERIAL MENINGITIS is much more serious. It can cause severe disease that can result in brain damage and even death.

Feel free to google those two.  Rainy's is the serious case (of course) because of her brain diease but even without her brain diease she would still be in trouble because of how serious Bacterial Meningitis is.

2.  What all infection does Rainy have?

Well Rainy started this November 1st.  That is why we are almost in our 2nd month in the hospital.  This recent problem began with her Appendix.

Her list of complications from November 1st-current

1. Two major ear infections

2.  Brain pressure change (just made her worn out)

3.  Appendix

4. Peritonitis

(which is a dangerous infection that happens when bacteria and other contents of the torn appendix leak into the abdomen. In people with appendicitis, an abscess usually takes the form of a swollen mass filled with fluid and bacteria. In a few patients, complications of appendicitis can lead to organ failure and death)

5. Abscess(S) a total of 5 and more large Abscess were found via CT in Rainy's stomach.  Now sometimes doctors are able to go inside of an Abscess and drain it, in Rainy's case the large abscess(s) lay on a major artery and would have been TO dangerous to drain.             (An abscess is a localized collection of pus that generally develops in response to infection. An abscess is typically painful, and it appears as a swollen area that is warm to the touch. The skin surrounding an abscess typically appears pink or red.)

6. pneumonia- Pneumonia is an infection of one or both lungs which is usually caused by bacteria, viruses, or fungi.  (this more then likely started because of her being on her back in a hospital bed for 3 weeks straight.

7. Infection in the shunt- Rainy has a shunt that connects from the cyst (behind the brain stem) This cyst fills up with Hydrocephalus (extra CSF) The CSF (spinal fluid) got infected due to ALL of the stomach complications from surgery.  The doctors UP HERE acted quick.  They externalized the shunt (so basically the shunt came out of her body except where it is connected into the cyst.  This shunt drains into a bag by her bed.  The goal is to get the infection out of the CSF (spinal fluid).

8. The last four operations.  Appendix and then the rest were to get the shunt out and replacement of the externalized tube because she still has the bacterial menigitis.

9.  And because of all this, the infections, the surgery, the trama, Rainy has been losing her hair. 

3. Is this problem Rainy is having serious?

Well yeah.  If you review all of the above and even google it you will find that all of those infections and conditions alone can and do kill people.

If you read everything you will see that Rainy is truly fighting for her life.  And that is why when things got out of hand back home the doctors told us to say goodbye to her because at that point Rainy was going on oxygen and running fevers up to 104.  With a lot of nagging I finally requested a menigitis test that I knew they could not do back in Topeka, which would mean they had to transport her up here. 

If you take anything from this, always always trust your gut if you feel something isn't right with your child, always go with that. 

I am not being dramatic that we almost lost Rainy.  And Unfort. we are still not out of the woods.  The Menigitis hasn't responded to the medications and that is why we are now in the medications that Rainy has allergic reactions to.

Because of her condition things have really been a touch and go kind of game.  We have good moments and then we have really really bad ones.  Rainy is fighting but she is pretty worn out. 

So I hope this helped.  Now I would like to add a few more babies on the prayer chain.

Sasha and her roomate Licia both girls come from two different families but both have only half of their heart.  Both are beauitful and very precious, we lift these strong babies up for their bodies to be healed.

Lylia (I hope I spelled that right) 11 day old baby in the PICU up here.

Prayers for Baby Jordan, things are looking grim.  prayers please.

-Jewels

Well we have been stuck in between a rock and a hard spot.  This upcoming week brings about a scary option.  We have been doing antibotics for 2 weeks (out of an almost 7 week hospital stay all together) and although she is on 4 different Antibotics. it is not enough to clear out this Bacterial meningitis.  So the option we tried to avoid was going down the penicillin route seeing as Rainy has a horrible reaction to the whole cillin family.  The plan is to give her a tiny bit at a time until her body is use to it and then give more of a normal dosage.  This can only be done in the hospital and she will still be allergic to it after the hospital.  They will have an epinephrine kit available by her bedside in case she has a really bad reaction.  But this is the only choice we have at this point.

So they will wait until Monday to give her body some time to recover from her 20th brain related surgery before traveling down this scary road.  The reason for her pain:  During surgery her neurosurgeon saw some "suspicious scar tissue" in the area of the drain (which connects to her cyst inside the brain) he is not concerned about the scar tissue just taking precaution to assure that it is not infected.  He cleared up the scar tissue.  That left Rainy in a lot of pain and explained why surgery took a while yesterday.  In the middle of the night Rainy had to be given fentanoyl several times (a pain killer 100 times stronger then morphine)

Needless to say this morning we spent a few hours with Geoff and Fox and Max (VERY VERY MUCH WANTED AND NEEDED) and we all had a great time.  Rainy sit in her wheelchair and played with the doll house in the play room with daddy and I spent time with both the boys (took Max for a wagon ride and then Foxy man and I snuck to our secret hiding place and he ate ice cream and told me about his week)  I am very much excited about Christmas as the boys and Geoff will be here (hopefully and praying for room at the Ronald Mcdonald house from the 23rd-27th)  We will be here for new years eve (which marks Geoff and I's 7 year wedding anniversary....awww the things we have seen and done...LOL...great 7 years looking forward to a much EAISER 7 years and then a lot more..lol)

Okay so I promised in the subject:  Jewels Vs the EVIL (yeah I just added the evil) hospital bed table

It was a cold and dark morning (okay it wasn't really cold but it really does add to the effect of the evil hospital bed table...plus it is my story and I can tell it as I see it)  It was a cold and dark morning with garden gnomes dancin in the background while trolls roamed the hall.  I woke up to Rainy who was sitting up looking at me.  Normally that wouldn't alarm me, but I wasn't excepting her to be just staring at me like a child from THe children of the Corn.  I walked over ....no wait....I stumbled over to her.  "Rainy why are you staring at me and not watching the TV"  she smiled, "I want to color."  (cue scary music and show only one single spot light on the evil hospital table)  I looked at Rainy and tried reasoning with her.  "Now come on Rainy you can't sit up until you are clamped"  she smiled with an evilness (yeah that is a word google it) about her, "I am already clamped.  I want to color."  I stopped, "yes but you haven't had breakfast yet." she smiled with an even more evil smile, "oh but I have (some words have been changed to add to the horror part of this story)" 

I grumbled as I walked to the evil hospital bed table.  Now over the past 6 years and 6 months i have stayed in and out of this hospital, and I have yet to master these damn tables. (this story has been R Pg-13 due to some graphic lanuage and mispelled words)  I rolled the table over to Rainy.  I then tried the "easy" button to lift the table. It wouldn't move.  I then got behind the table in almost a cpr manoevour  and pushed the button as I lifted the table over and over again.

Rainy laughed a horribly evil laugh as I fell backwards with the table.  She then threw things at me (again things and contents in this story has been changed to protect the innocent and to add a little more attuide to Rainy)  I stood up and tried again.  And again.  And again.  I then walked down the hall and asked the nurse for a hammer and or a pair of sissors.  After being told no I walked back to the room.  I decided to be mature and smart about the problem.  So I picked up the nurses call button that has the tv volume on it.  I turned the volume up.  Turned around and started kicking the cra...poop out of the table.  I laughed with evilness in my laugh

MUHAHAHAHAHAHHAHAHAHAHAHAHAHHAHAHAH (cough cough cough still getting over broncitis) MUAHAHAHAHAHHAhahah

Rainy scream.  The nurse came in and pulled me off the blood stained evil hospital bed table (ok blood was really ketcup packets that was on the table)  The nurse asked if I needed help (mentally it was to late, but physically the table was being a pain....so yes.)  She (a really tiny and pretty blonde this is important to the story as I am a mommy of three, my looks went out the window 6 years ago) she took one perfectly polished finger nail finger and pushed the button (the table popped up and then as if to mock my already bleeding heart the whole entire room of Furniture started dancing and singing as birds flew to the window (smacking into it and falling to their deaths....the windows aren't open) and bunnies (who were smart enough to use the front door and then go down four different hallways up the castle elevators to floor 2 then through the doors signed in with a paw print and found our room) came dancing around the nurses as I laid there crying.

The end.

Again some things were changed such as:  the bunny part, they actually took the moon elevators and then the castle elevators....but everything else was 100% truth.

-Jewels

Rainy went into surgery at 1pm and just came out after 3pm.  She stayed in recoverying for a half hour and is now back in her room.  This was to try and replace the tubing that drains from her brain into a bag outside her head.  Until the infection clears we cannot do anything but wait.  Today was her 20th brain related surgery.

Pain Pain Pain....after the last 10 days here and 4 surgeries (1 appendix and 3 brain related) she is suffering badly from pain.  They are doing their best to keep it under control.

We hope this will control the infection in her brain and that in about 7 days the next surgery she has is to place the shunt back in, but again I will not even guess as not to jinix myself...lol.

Right before surgery they clamped off her shunt (not allowing it to drain) only an hour into that she started having major head pain and fell asleep.  2 hours after the shunt was clamped off they took her into surgery. Needless to say it is SUPER important for that shunt to work.

Well I thought I was losing hair, but it turns out that Rainy is actually the one losing hair.  She already lost a bunch from surgery the other night.  But as I was trying to brush through her curly hair (and by brush I mean barely even touching her hair) big chunks of hair came out.  Rainy looked surprised and said, "I thought you said you weren't going to cut my hair" and I looked surprised by the piles of hair I had in my hands....and told her, "I am not cutting your hair."  she felt the back of her head and pulled a chunk out and started to cry, "you cut my hair." and I started to cry, "no I didn't"  the nurse told her that I didn't but Rainy isn't bying it.

So needless to say I asked her doctor(s) what was going on.  And they said Rainy has what they call Telogen Effluvium (a dr. seuss book title at best)  Basically if you have chronic,acute illness or trama, surgery, or even infection (which Rainy has all five of those out of 12 possiblities) then you can have TELOGEN EFFLUVIUM and it can take up to 6months before this stops.  SOOOOO trying to explain this to a very upset Rainy has not happened.  Good news so far it is only falling out in the back and I still can get crafty with a hat.

Also I am told that the baby Jordan that we thought was going home to be with the Lord ( is doing WELL!!  .  KEEP ON PRAYING!!!

For more updates:  www.freewebs.com/pray4rainy/

Thank you to our church for the cards and the golden SNOWFLAKES which by the way I am waiting for someone tall to come in (clearing throat at Chad aka Tiffany's hubby to be...lol thanks again for hanging the star)

Thank you to all of you who have sent her things, I am greatful to you all and I am not sitting in front of the list but I am blessed by all of you.

-Jewels

Well I thought I was losing hair, but it turns out that Rainy is actually the one losing hair.  She already lost a bunch from surgery the other night.  But as I was trying to brush through her curly hair (and by brush I mean barely even touching her hair) big chunks of hair came out.  Rainy looked surprised and said, "I thought you said you weren't going to cut my hair" and I looked surprised by the piles of hair I had in my hands....and told her, "I am not cutting your hair."  she felt the back of her head and pulled a chunk out and started to cry, "you cut my hair." and I started to cry, "no I didn't"  the nurse told her that I didn't but Rainy isn't bying it.

So needless to say I asked her doctor(s) what was going on.  And they said Rainy has what they call Telogen Effluvium (a dr. seuss book title at best)  Basically if you have chronic,acute illness or trama, surgery, or even infection (which Rainy has all five of those out of 12 possiblities) then you can have TELOGEN EFFLUVIUM and it can take up to 6months before this stops.  SOOOOO trying to explain this to a very upset Rainy has not happened.  Good news so far it is only falling out in the back and I still can get crafty with a hat.

Also I am told that the baby Jordan that we thought was going home to be with the Lord (at one point they thought she had) is doing WELL!!  They do not think she is brain dead and they are doing more tests on her.  KEEP ON PRAYING!!!

For more updates:  www.freewebs.com/pray4rainy/

Thank you to our church for the cards and the golden SNOWFLAKES which by the way I am waiting for someone tall to come in (clearing throat at Chad aka Tiffany's hubby to be...lol thanks again for hanging the star)

Thank you to all of you who have sent her things, I am greatful to you all and I am not sitting in front of the list but I am blessed by all of you.

-Jewels

Update:  Rainy still has tested postitive to an infection in the shunt.  So until we are clear we can't started counting final treatments.  When we can start counting we will need to count 10-14 days.  Believe me when it happens I will let you know.  She is pretty wiped out but has loved all the gifts and cards and calls and visits.  Everytime she falls asleep she wakes up to something new.  Which she said was better then waking up to finding more of her hair missing...lol.

Here is our address as of right now:

2401 Gillham Rd
Kansas City, MO 64108
(816) 234-3000 (Room 2henson number 9 Rainy Cook's room)

Here is our prayer list:

Baby Jordan in the PICU is still ALIVE and we want her in everyone's prayers.  Christmas Miracles do happen and I believe that God can heal her.

The twin boys in the PICU are holding their own.  In fact one will be placed on a floor (means out of PICU and in a normal room) the other one is still very very sick.  These boys are two months old.  I was blessed to pray over one of them and he is just beyond precious.  Prayers for his mom as she needs sleep.  And for the family all around.

Cheyenne is a sweet 10 year old baby girl in the PICU hopefully going to a floor.  Prayers for her mom and dad.  I was blessed to speak with her mommy tonight.  Prayers for their situation.

Caden oh what a sweet baby boy he is.  I am blessed he is down the hall from us.  His mommy and daddy are really sweet parents and I ask for prayers for them.

Kyliee GOT TO GO HOME with her mommy Tracy.  She is a sweet 6 year old with a little sassy way just like Rainy.  She had her second shunt revision and spent time with Rainy yesterday night and this morning.  We will miss you BUT happy you got to go play on your Wii.

Hawk is a little baby boy in the PICU that had open heart surgery on Friday.  He is doing pretty good but still struggling, we ask for prayers for him.

Hunter we keep on praying for you baby boy.  Hang in there.  God is good.  We will pray and pray for you and your family.

I am blessed to meet new families everyday.  In a happy hospital there are so many tears of joy and pain shed.  I ask you all as you lift up Rainbow you lift up these little ones as well.. All of them, although I meet new people and do the best to talk to everyone there are still lots of families here that I haven't gotten to meet that need prayers as well.

Thank you for your prayers, love and support.  Keep on praying we can hear those prayers.

-Jewels

Rainy came through surgery, and it was confirmed tonight that she has Meningitis on top of everything else she is battling.  This is serious BUT they think they caught it early enough.  Needless to say our antibotic days are starting over and adding 3 more medications that have in the past (twice) gave Rainy's kidney's trouble.

We are asking for prayers and prayers and more prayers.

Rainy's shunt is growing more of the infection Enterococcus   This is a bacteria away from Meningitis. This is coming from the drain that is coming out of her chest.  NOW we will need to go into surgery tomorrow and take the whole shunt out and keep it on the outside of her head (which means her hair will be going again, BUT we will have a Rainy) That is the plan for tomorrow......whenever everything is said in done she will need a brand new shunt placed so she will have atleast her 20th surgery before we go home in Jan....maybe Feb.

Keep on praying.

This is by far the worst I have ever seen our baby girl.  Last night hit a low.  104 at the highest for fever, oxygen given because she couldn't breath on her own.  Please pray for Rainy.  She is getting a pic line put in and we were told to get comfortable.....oh boy will we...lol.  Please pray for Rainy.  Christmas is coming and for all of you wanting to know my wish, I want my baby girl to....be here forever and ever amen

Plan of action today:  MORE BLOOD WORK her infection is climbing up the scale.  Pic line so they will put her under.

Call if you wish visit if you want.  (785) 354-6000 room 516

As for now we are hanging tight in the hospital waiting for results from blood tests.  Rainy will be in the hospital until her infection clears up and her fever is gone for 24 hrs.

Yesterday morning Rainy was suffering from stomach pains.  She was seen in her doctors offices here in Topeka.  By the afternoon her stomach was swollen and hard.  They tried to draw out urine sample and failed.  Her bladder was not working.  The doctor was afraid her kidneys weren't working as well either.  Rainy was taken to Stormont-Vail hospital here in town.  The doctors found her appendix were in need of coming out and were causing problems with her bladder.  Rainy was taken into surgery and was in recovery 2 hours later. 

The doctors drained her bladder and are waiting to see if she can do it on her own.  So far she has not been able to.  Rainy also has been running a high fever and it has not broken yet.

We are not sure as of now what more is needed to be done for her.  She is not drinking and is in and out of being awake and in lots of pain. 

We are asking for tons of prayers for our baby girl.

You may call or visit if you would like at Stormont Vail (785) 354-6000 in room 516. Please do not come if you or anyone has been sick.

Please pray for Rainy!  And Fox and Max and Geoff.

Thank you,

Julie

Rainy is in surgery right now...problems with her bladder and appendix and is in emergency surgery.  more later.

We made it home....yay.  ANd I am soooooo tired and would love nothing more then to sleep for a few days.  In the meanwhile just counting my blessings.

Hello Friends,

Hope you all had a great Thanksgiving.  I finally got the website for Rainy updated so after this please check her website under "updates part 2". 

www.freewebs.com/pray4rainy/

We spoke with her doctor and when we first came in on Wed. we thought we would be going home on Thursday.  But Rainy hasn't been able to eat and keep it in her tummy.  She has been doing the IV therapy to keep her strenght and energy up.  She was able to eat yesterday night and when the food came she almost bit the lady carrying the tray that was how hungry she was.  She also slept all day yesterday and was up until 2 am this morning playing Candy Land with her mommy and "aunt" Karen and "aunt" Krissy.  We had a peaceful Thanksgiving.  Geoff stayed home with the boys because Max wasn't feeling well BUT that didn't keep Max from running all over the place.  My friend Karen brought food over for the boys and Geoff and that was really great.

I had to visit the ER myself yesterday.  Of all the places to be stuck I am glad we were at the right place.  Last week when Rainy first came in for the week I slept on the bed by the window (which is a plastic couch that is hard) I twisted my neck and it caused a pinch nerve and knots down my back.  So two nights ago the same thing happend.  I went down to the ER and they told me my neck all the way down to my shoulder blades on my right side was swollen.  So they gave me a shot of a muscle relaxer and some medications to help me get relief. 

But when I came back up Rainy was just waking up so I was glad she hadn't been up waiting and wondering where I was. 

The game plan is we are staying another day, and will go home if Rainy keeps everything down.  The only thing the doctors think is going on is complications from her brain illness.

For more information or updates on the family, check out Rainy's website (see above)

Thank you for your support,

Jewels

Hello Friends,

As all of you know since Rainy's last surgery in Sept. she has battled on and off with a nasty infection that just doesn't want to leave her alone.  I brought her in this morning after a nasty seizure and ongoing high fevers (which is why the seizures are up in numbers) This pretty much wiped her out all through the day and was hospitalized locally.

She should be able to go home soon.  We were here last week for most of the week getting treatments for the infections and have come back.  The doctor thinks she is having her normal pressure change and that is why the vomitting has happend.

I am wiped out, but have a few prayer request:

Pray for my father in law who is back in the hospital and just had a surgery today

Pray for a lady in the ER that is having bladder problems.  Her mom is also in the hospital having surgery.

Pray for a friend who I have met via phone (last night) who's little ones are sick.

Prayers for all those who travel for Thanksgiving.

And as always, prayers for Rainy.

WHEN IT RAINS IT SURE DOES POUR OVER HERE.  After Rainy's last surgery we had labs drawn to see if she was fighitng an infection.  She was, but only in her ears, which for someone who hurts all the time there is no wonder that she is having horrible pain in her head.....  At any rate Rainy got real sick last night and will need to be on bed rest for atleast 24 hours.

 would also like to give a update on My Foxy man----  Foxy man has been struggling with his asthma and had to get breathing treatments here at home.  Fox is now asleep and I just want to say Praise the Lord for giving Foxy man's body a break.

On Dec. 6th (Sat.) there will be a fundraiser at Rainy's school to raise money for a much needed second bathroom on the house.  BUT in order to do that we need to reinforest the basement and replace the sump pump and septic tank.  So there will be a rummage/baked goods sale and a Pancake feed for all of you wanting to donate anything whether you would like to help out at the benefit or like to donated good to gently used items.

We also have a group of friends, doctors and Dream Catchers that have taken the time to tape record our family to enter into the Extreme Home make over edition.  That makes my family feel loved and no matter what the outcome is you all will remain in heart as a family of friends who did all they could to help out our family.

Also Sunday morning was beyond crazy and I am glad both Fox, Rainy and myself are home now from the hospital.

WHEN IT RAINS IT SURE DOES POUR OVER HERE.  After Rainy's last surgery we had labs drawn to see if she was fighitng an infection.  She was, but only in her ears, which for someone who hurts all the time there is no wonder that she prefers woman nurses....they are princess as well.  At any rate Rainy got real sick last night and will need to be on bed rest for atleast 24 hours.

 would also like to give a update on My Foxy man----  Foxy man has been struggling with his asthma and had to get breathing treatments here at home.  Fox is now asleep and I just want to say Praise the Lord for giving Foxy man's body a break.

On Dec. 6th (Sat.) there will be a fundraiser at Rainy's school to raise money for a much needed second bathroom on the house.  BUT in order to do that we need to reinforest the basement and replace the sump pump and septic tank.  So there will be a rummage/baked goods sale and a Pancake feed for all of you wanting to donate anything whether you would like to help out at the benefit or like to donated good to gently used items.

We also have a group of friends, doctors and Dream Catchers that have taken the time to tape record our family to enter into the Extreme Home make over edition.  That makes my family feel loved and no matter what the outcome is you all will remain in heart as a family of friends who did all they could to help out our family.

Also Sunday morning was beyond crazy and I am glad both Fox, Rainy and myself are home now from the hospital.

Thank you SB moms and dads group for the bulid a bear gift card (the pink kitty with pjs is the one Rainy got with the ballet outfit all thanks to those who gave her gift cards.)

Thank you to Angel and family for the carousel ride.

Thank you Ramona and Caroline (Rainy's little friend) for the bath and body works sleep lavendar set, this was something the pain managment team had mentioned to try for the pain Rainy has)

Thank You again to Rainforest Cafe for showing our family a great day and for turning off the thunderstorm so she wouldn't have problems with her seizures.  Thanks for our lunch!

Thank You to all the pastors from Witchta who came to visit us when Rainy was in the PICU, really made us feel cared for.

Thank You to Mrs. Williams, Prinicpal Groves and all of the staff and students at Rainy's school for the cards and the visits. And overall understanding of her health.

Thank you for all the prayers and love you all have shown to our family!

Keep on praying for anwser for our baby girl!

Thank you for putting this smile on Rainy's face. (see her website if you can't see it here)