Katiestory

Kaite Rideout Benefit Dance

2009-05-30T01:19:00.001-07:00

Katie Rideout Benefit Dance
Music, Dancing, Basket Raffle & Silent Auction
Saturday, July 11, 2009 7:00-11:00 p.m.
Epiphany of Our Lord
3146 Ivanhoe, St. Louis, MO 63139
In October, 2008, Katie Rideout was diagnosed with a very rare disease called CNS Vasculitis-- meaning inflammation of the blood vessels confined to the brain, the spinal cord and its covering. Katie was a normal, healthy 10-year old girl playing in her volleyball game one day who was not able to move her left arm and leg the next day. Her face and mouth were damaged, as well, affecting her ability to eat and drink. The signs and symptoms of CNSVasculitis are similar to those of a stroke because they result from a reduction or sudden stoppage of blood flow to the brain. Katie has been undergoing chemotherapy and steroid treatments in an attempt to “open” these brain vessels to get blood flowing back to her brain tissues. Treatment has slowed the progression of the disease, but no definite, long-term prognosis has been confirmed.
On Saturday, July 11 at 7:00 p.m., Katie’s family is proud to host “Katie Bug’s Journey”, a Benefit Dance, Basket Raffle and Silent Auction. All proceeds will be used for a Trust Fund established in Katie Rideout’s name. We hope you enjoy this event which will help support Katie on her journey to a cure for her disease.
• Donation of $20 per person includes admission and participation in FUN-RAISIN’ challenges:
- Chuck-a-Luck
- 50/50
- Heads or Tails
- Liquor walk
• Cash Bar available all night!
• Hot dogs and other snacks available for purchase
• Door Prizes…just for attending!
• Silent Auction ... with the winners announced that night!
• Incredible Raffle Baskets will also be available
Print Name ________________________________________________________________________
Street Address ____________________________________________________________________
City, State, Zip ____________________________________________________________________
Primary Phone ________________________ E-mail address________________________
Send this form along with payment by June 25, 2009, to:
Katie Bug’s Journey, 31 Willmore Rd. St. Louis, MO 63109
Number of tickets _____ x $20 each = $______________ TOTAL ENCLOSED
Reservations are limited! Please complete form and mail by July 1, 2009 and tickets will be mailed to you.

MRI results

2009-05-25T01:16:00.000-07:00

Katie's MRI results are good. There are no new lesions on her liver and the ones there have not increased in size. This is great news as Katie's medication has been cut down or cut out. Next MRI is not for 6 months. yahoo!

God is great!

YaHOOOOOO

2009-05-13T01:45:00.000-07:00

Katie's liver enzymes are back to normal! Wow She is due for an MRI this Friday 5/15 so let's say a loud prayer that it shows no changes for the worse. She is in the last 2 weeks of 5th grade and next year she will be a middle schooler. Even with everything she has gone through this year, she has managed to keep up. There as still many hurdles to overcome. Last week when she went to a birthday party that was held at a rock climbing facility she had a really hard time not being able to scamper up the ropes. Her scout troop took a really long hike to earn their hiking badge at Powder Valley. Katie came through it with flying colors. She helped distribute April Showers (Girl Scouts) bags too. She has such a can-do attitude

But those who wait on Yahweh, will renew their strength.....Isaiah 40 vs 31

Which way to go?

2009-03-24T18:33:00.000-07:00

More bad labs for Katie. Her liver lab work is not looking good. The Doctors believe that maybe the chemotherapy drug Cytoxin is causing liver damage. They have decided to stop it for a week and see if that improves the liver labs. Trouble is, that is the drug they are using to keep the vasculitis in check. This is truly a balancing act with no clear guidelines. If we stop the cytoxin, does the vasculitis return? If we don't stop the cytoxin, does it cause irreparable liver damage? since this is so rare, it is not like there are other cases the Doctors can refer back to and say...well when we did this, we got this result.

We need to pray for God to guide the Doctor's decision making and to give peace to Kelly and Katie. also some miraculous liver regeneration would be great!

Trust in the Lord always

Lab work again

2009-03-17T07:51:00.001-07:00

Katie has to have lab work about every 4-6 wks. 6 weeks if it is good and 4 weeks if it is bad! Last time it was bad, so Katie just got lab work again. The results were not good. Last time we hoped that the bad results were because Katie had the stomach flu and wasn't able to keep her medicines down. The results this time show that wasn't the case and the trend is not what was hoped for. The MD's decreased some of her medications thinking that maybe that will help but they are not sure. The next lab work is 4 weeks and if the trend is still in the wrong directions, she will have to revisit some of her doctors to come up with another plan for treatment. Katie continues to do awsome in her physical therapy and has caught up at school. this new lab trend is the only dark cloud on the horizon so far, it affects Katie's liver and needs to stop! Get on your prayer hats and let's continue to lift her up to our gracious Lord!

Prayers!

2009-02-19T02:25:00.000-08:00

Katie's latest test showed some lesions on her liver. Her rhuematologist thinks that it maybe due to the fact that last week Katie had the flu and wasn't able to keep her medication down. She will have new test in about a week and see if they are gone. We need your prayers!

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." Deut 31:6

Rats!

2009-01-26T02:31:00.000-08:00

Rats! Katie missed her appointment with the head honcho MD of rehab. A snafu with the dates was to blame so she is rescheduled in Feb.

The game with the St Louis University Bilikens was awsome. Kelly says they were treated like royalty! Ask her about it when you see her!

Katie helped out at the Sausage supper and next month she is helping her Mom with the Girl Scout meetings. Little by little, step by step, Katie is recovering.

This is the day the Lord has made, let us rejoice and be glad in it.

Katie turns 11!

2009-01-19T06:35:00.000-08:00

Sorry for the big gap in posting. The holidays just got crazy!

Lots of great stuff is happening with the Rideout girls. Katie turned 11! Now that is something to celebrate normally but this year it is something to fall on your knees and thank God for. This past October, it was in real doubt that Katie would reach her 11th birthday. She is such a miracle! She had a wonderful party, held at the Youth room so all her family and friends could celebrate with her. A great time was had by all.

This past weekend Katie was named the Captain of the Bilikens basket ball team at St Louis University. She got to sit with the team and do all kinds of neat stuff. It was broadcast on 101.1 radio. How cool is that?

She has an appointment coming up this Thursday 1/22 to see the head honcho of rehab at Cardinal Glennon. Her therapist thinks Katie will blow him out of the water with how great she is doing! Way to go!

Katie is back at school most days and has caught up with the other students. She brightens up every ones day. Kelly says she see some of the happy go lucky Katie she once was peeking through.

We are so thankful to God for Katie and just lift her and her Mom/sisters up in prayer.

Trust in the Lord always

This week in the life of the Rideouts

2008-12-08T02:22:00.000-08:00

This week brought good news and better news. Katie was feeling poorly last week and had to go to the ER. She had an infection called thrush that is a result of one of her medications. They have some nasty swish and swallow medicine to take care of it and she is doing better.

The thrivent funds were released to the Rideouts Yeah! It surely will help, escpecially at this time of year. Thanks again to all who participated!

Katie had a neurology appointment and the neurologist was soooo pleased. He told Katie she made his day. He was so happy with how she is doing.

The Rhuematodologist (whew is that a big word?) has been pleased as well and has cut down one of Katie's medications as well. Her steriods have been playing havoc with her moods and appetitie so any decrease in them is welcome, plus it is a sign that things are going in the way they should!

Katie has been working really hard and is almost caught up with all her school work. Isn't that fantastic. Her At-Home Teacher has remarked that she is doing great on her work and hardly needs him at all. We should see her back in the classroom in January!!!

Katie has been working hard at therapy and a activity that she always enjoyed was roller-skating. So they have been working on that. Katie got the skating down really well but when her therapist asked her to fall and make a plan on how she was going to get up, that really stumped Katie. You never think of having to plan something like that out do you? That is Katie's reality now. It is amazing the amount of effort and determination it is taking on Katie's part. What an amazing little girl (although she would object to me calling her that!)

Kelly's FMLA is running out at the end of January and she has to go back to work or lose her job. She and Katie's teacher feels she will be able to attend at least 1/2 days at school by then but she tires out so easily. Kelly is going to need help in getting Katie somewhere she can rest after that 1/2 of school. If anyone has suggestions or can offer to let Katie rest at your house after that 1/2, that would be wonderful.

Keep praying and lifting them up to God!

1 Corinthians 8:6 yet for us there is but one God, the Father, from whom all things came and for whom we live; and there is but one Lord, Jesus Christ, through whom all things came and through whom we live.

Thanksgiving scare

2008-11-30T22:24:00.000-08:00

Kelly assures me that the Rideouts had a good thanksgiving but right afterward Kelly and Katie had a scare! Katie has got a cold. No just any cold. With the medications that Katie is taking a cold could be very serious so it was back to the Emergency department at Cardinal Glennon for Katie and Kelly. Katie was released to go home so that was a blessing and a great big whew for Kelly.
On another note, I found out that the funds from the bake sale have still not made it to the Rideouts! If anyone can tell me how to get Thrivent to release these funds please let me know. If I had known they would keep them so long I might not have gone for the matching. The Rideout need those funds yesterday. Anyone with insight? Who should I call?

The posts to this blog are infrequent now that Katie seems more stable. I will make posts as Kelly gives me information to pass on or if anyone else has items concerning Katie that needs to be shared. Thanks so much for all the support for the Rideouts. God has truely blessed them with wonderful friends!

Psalm 31:24 Be strong and take heart, all you who hope in the LORD.

PIN DROP!

2008-11-24T02:19:00.000-08:00

Katie was at therapy this last week and was playing a board game. The therapist told Katie it was time to go and without prompting, Katie started picking up the pieces (small) with her left hand. The whole room stopped what they were doing and watched. You could have heard a pin drop! The therapist said "Katie do you realize what you are doing?" Katie looked up and noticed everyone watching her and said "what?" The therapist was so overjoyed she laughed "you are using your left hand to pick up the pieces!" The whole room cheered.

You might have also seen Katie this Sunday singing with the Sunday school choir! It is so nice to have her back.

The Rideouts are running low on gas and none of the proceeds of the Bake sale have been released (they are with Thrivent right now) and with all the trips back and forth to therapy and the Doctors office, Kelly is out of gas. If anyone has a gas card they could donate it would be a great blessing.

So then, just as you received Christ Jesus as Lord, continue to live in him, rooted and built up in him, strengthened in the faith as you were taught, and overflowing with thankfulness.”- Colossians 2:6-7

2008-11-20T23:11:00.000-08:00

Therapy went better this week. Katie is really working hard. She gets to see her friends from school when they go to pick Mary up. All her friends really miss her! Another round of Doctors appointments and blood work. The long hard road back is just starting and we need to keep Katie and all the Rideout family in our prayers, they are not out of the woods yet! Let's continue to lift them up to God.

Philippians 4:13 (Read all of Philippians 4)
I can do all things in him that strengtheneth me.

BAKE SALE A HUGE SUCCESS!!!!

2008-11-17T00:51:00.000-08:00

I am sorry it has been several days since the last post. Katie continues to go to therapy on Tues and Thursdays. She has frequent doctors appointments as well but she is doing well. The family is rejoicing at being all together at home.

The Bake sale was held Sat at the 5pm service and then between each of the services on Sunday. Thanks to all who came and helped man the tables, thanks to all the fantastic bakers, and thanks to all of you who bought the goodies. We made a phenomenal amount! Thrivent had already committed to matching up to $1000 thanks to Mary Wolfram and Kari Lovera who got the approval squeaked through at the last minute. The matching funds should not interfere with the trivia night because it is in 2009, next year!

So many people came by and expressed their love and concern for the Rideouts, the generosity and compassion were just mind boggling. I know our church always supports each other with prayer but to see the very real outpouring of physical support made me see what the Bible means when it says " Matthew 25:35For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.'
37"Then the righteous will answer him, 'Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38When did we see you a stranger and invite you in, or needing clothes and clothe you? 39When did we see you sick or in prison and go to visit you?'
40"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'

To the saints at Salem....Thank you all

BAKE SALE

2008-11-14T00:35:00.000-08:00

Remember the bake sale is Sat after the 5pm service and sun between services and after the 11 pm service till 1230. Please bring your baked goods to the church kitchen by Sat at 4pm. Thanks so much for your support!

Galloping

2008-11-13T00:41:00.002-08:00

Therapy was really hard for Katie on Wed. They asked her to do alot of things she just couldn't do. Galloping was one of them. Katie decided that if she never galloped again, that was fine with her. Now you wouldn't think that galloping like a horse was a big deal but I guess it moves some muscles you don't normally use in just a walk. The therapist asked Katie to think of what she wanted to be able to do in the future. It is hard for a 10 year old to invision not being able to do what ever she wants so it was very hard for Katie to do that. She decided she really wants to be able to swim and run. She is going to discuss this with her physical therapist on thursday. She has to get some blood drawn and more therapy then so it will be a long hard day for her.

The family is so happy to all be together again and is really thankful for all your prayers and help. Keep praying

By this all men will know that you are my disciples, if you love one another John 13:35

Veterans Day

2008-11-11T01:41:00.000-08:00

Katie got to go to the Veteran's Day Celebration at school. Anyone who saw her walking would never know that there was any difficulty. She is doing so great! Wed starts her outpatient physical therapy. The home schooling is still being arranged. Some tears were shed with Mary's return from the Baggetts (an amazing family) and everyone was back under one roof. The only member missing is the Rideout's dog who has been staying with the Holloways (another amazing family).

Salem has shown such love and support, lets keep it going with this weekends bake sale.
If you can help man the table, please email me at msgaffney4@sbcglobal.net and let me know what time and sat or sun.

Thanks

A new command I give you: Love one another. As I have loved you, so you must love one another John 13:34

HOME HOME HOME

2008-11-07T17:28:00.000-08:00

Katie got to come home!!!!!! We got to see that great smile at school when Katie came to see all of her friends after being discharged from the hospital. She has lots of work still coming at her but at least she will be sleeping in her own bed. Kelly is looking forward to a good nights sleep too.

The MRI results are the same, which is good news. There has been no progression of the disease. Katie will continue on chemotherapy and steroids for the time being.

All of this is good news!

Additionally, I understand that the Men's Club from church is holding a trivia night in January and the proceeds will go to the Rideouts. If I have that info wrong please let me know but that is what I was told. Way to go Men's Club!!! We will hold off on asking for Thrivent matching funds until the trivia night since you can only request this once.

Also, the Regions bank family fund news: When you tell them you want to donate to the Rideout family fund, you must specify Katie and Kelly or else they can't find the account. So make sure you ask for the Katie/Kelly Rideout fund when you make a donation.

This is a real time to be joyous and praise God!

Praise God from whom all blessing flow

2008-11-06T23:21:00.000-08:00

A flyer will go out with all school kids this week for the bake sale. It will be in the Spirit and Principals pad and Mary Wolfram is checking into getting matching funds from Thrivent. If you are a thrivent member, contact Mary so she can add your name to the list of participating families. The more thrivent members participate, the greater chance we have for matching funds!

T-1 Katie coomes home tommorrow!

I can do all things through Christ which strengthened me. - Philip. 4:13

MRI done!

2008-11-05T23:14:00.000-08:00

Today was long, Katie forced the docs to put her to sleep for her mri. that meant no food a new iv and a disappointed mom but she had the test .It was a little later than planned due to the breakfast she ate. We dont have results yet. Katie had a special thearpy tonite, she played with three dogs all of which had some pretty cool tricks. One of them could spell cat. I know it was amazing. We spent the next hour decorating cookies courtsy of Cindy Putmans baking skills. Great fun with colorful cheeks and noses. Two more days I think,
thank you, love kelly

for the joy of the LORD is your strength. (Nehemiah 8:10)

zoo trip

2008-11-04T22:54:00.000-08:00

Katie got to go to the zoo today. She got to see the baby tigers and got some great pictures of the penguins. All in all, a great day. She was sooooo tired when she got back. It is a work out for everyone normally but for one who is working so hard on getting strength back, I bet it was a major challenge.

Wednesday is MRI day. Please pray for God's peace for Katie as she hates this test. Also pray for good news from the results. We sure want this behind Katie and her mom.

I have had a volunteer to man the bakesale table on Sat Nov 15 at the 5pm service so I guess we need the bake goods delivered to the kitchen friday or sat and clearly marked BAKE SALE
Any service organization is welcome and encouraged to participate. Let's make this a offering of love from all of Salem Church and School! I'll provide baggies or cling wrap if items need to be separated. If you need your pan back please mark it return to:

Be strong and of good courage, don't be afraid, nor scared of them; for Yahweh your God, He it is who does go with you, He will not fail you, nor forsake you. Deuteronomy 30:15

Turn about is fair play

2008-11-03T22:23:00.000-08:00

Katie is feeling much better, you can tell. She had gotten all sorts of creepy crawley things for halloween. She decided to play a joke on her nurse and put them in her bed linens. While Katie was out a therapy, her nurse came in to change her bed and found them. Apparently this is not the first time one of her patients has pulled that joke on her because she took it in stride. She decided to get Katie though and put the creepy crawlies back in her bed in the clean linens! Katie thought it was hilarious! They are making plans for some home schooling when she is discharged as Katie will have therapy probably 4x/week.

The dreaded MRI has reared it's ugly head again. Katie will have another MRI this wednsday. She really needs your prayers as she is deathly afraid of this test. They want to see how the chemo is working and the status of her blood vessels. Pray that God gives her a peace about this test!

T-4 to home!

Thy will be done on earth as it is in heaven

Bake sale update

2008-11-02T14:42:00.001-08:00

Any and all help, baking, manning the tables will be appreciated!

The joy of the Lord is my strength!

Katie on TV

2008-11-01T16:04:00.001-07:00

Katie was in a parade on Halloween! They had kids who are patients at the hospital in a parade to all the different departments and trick or treated! The local new came and filmed them and Katie was on the noon news! You should see her brace. It is purple with butterflies. She is walking really really well. She says they are not only making her work out hard but are making her do homework! Boy she just can't catch a break.

Katie and Erin are going to share a bedroom and it was painted some really cool colors. It looks so nice. The living room got painted too and has a lovely accent wall. (isn't that what the decorators say?)

count down to coming home T-6

The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge
2 Samuel:22

Home!

2008-10-30T23:38:00.000-07:00

The docs gave Katie a going home date!!!! one week from Friday. She is doing really fantastic!
She had a super day today, lots of visitors. She worked out hard at therapy. She got to meet Higgins the therapy dog and spend some time with him. She even played a game of kickball. It is amazing what they think of to help work those leg muscles. Katie got her leg brace today too. It is still uncomfortable and she is getting used to it.

Bake sale is on Nov 16 between the 9:30 and 11am services. It will be down across the elevator on the lower level at church. Any and all baked goods welcome!

And do not be grieved, for the joy of the LORD is your strength - Nehemiah 8:10

Pictures

2008-10-29T22:35:00.000-07:00

Here are some pictures of katie thanks to Kay Ruhl!

2008-10-28T22:32:00.000-07:00

Katie had a great time at the mall. She got some Hannah Montanna lip gloss and ice cream. She spent the morning in a hard work out and then went on the field trip to West County Mall with the staff from the hospital and other kids from the Rehab floor. Kelly said it was a great sucess! Activities in the evening are becoming a real challenge for Kelly. Anyone have any games that might be good for Katie? Katie's Girl Scout Troop had a halloween party and made a trick or treat bag of goodies for Katie this week. Her appetite and sense of humor are on the mend so the goodies should be a real treat.

Mary had a end of the season volley ball party at school and Kelly got to go to it with her since Katie started this new extended rehab hours. That was nice for everyone.

Questions for the future:
Did the chemo work?
Does that mean the risk of strokes are gone or are they just lowered?
Is Katie expected to get back most function?
Long term outlook?

Let's not let our support wain and remember to pray, pray, pray

Bake sale update

2008-10-27T17:18:00.001-07:00

The date of Nov 9th seem like a stinker for alot of folks. How about we push it to the next weekend? I'll check the church calender and make arrangements for space. This will give us alot of advance notice to everyone too. Nov 16th Ok? Thanks for the support!

The Lord is my helper, and I will not fear

Rehab

2008-10-27T17:08:00.000-07:00

Katie got moved up! She now is on the rehab floor. Her new room number is 5204. They take rehab very seriously there and Katie will be gone from about 8am to 4pm daily getting her PT and OT. Tommorrow she gets to go on a field trip to West county mall! They had her on a bicycle today and seem really pleased. They are very strict on visiting hours and everyone has to leave by 8pm so Katie can get ready for bed. A good night sleep is essential since they put her through some really hard work-outs during the day. Kelly is estimating another 2 wks before they get to go home. From her mouth to God's ear.

Remember: I can do all things through Christ who strengthens me

Good day had by all

2008-10-26T16:11:00.000-07:00

Today was a good day. Kelly and Erin got to go to church. Kelly has said that church has given her such comfort and strength. Lots and lots of visitors has brightened Katie's day. They brought lots of love and laughter with them. She is going to be moved up to the rehab floor (5th) tommorrow. If you thought they worked her hard before, you ain't seen nothing yet! Katie has been up and walking in the halls. She is so determined to get back as much as she can. She was bummed to miss trunk or treat and I asked Kelly is it would make her sad or make her happy to see some of the kids in their costumes. Kelly thought Katie would like that so maybe this week you all could visit Katie in your costumes. Do a reverse trick or treat and bring her some candy?

I would like to organize a bake sale/donation and the date that make most sense is Nov 9th at church. Only problem is I am out of town that weekend. Anybody out there feel up to taking this on? If not we can always plan another date. I don't want it to be too far away as Kelly's bills are slamming home now.

That is all for today, sorry I didn't put a verse with the last post, won't happen again

They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk, and not faint

Dress Down Days at Salem

2008-10-25T10:17:00.000-07:00

For just $15 per family, you can dress down (wear jeans or untuck with no belt on Fridays! the money will go to the Rideouts for help with expenses. I don't know about everyone but Anna and Emma love to untuck and not wear belts so this is a slam dunk for us. If every family at the school did this, think of how much we could raise. Lets go Wildcats!!!! (Isn't there a movie where they say that? hmmmmm)

LOL & Regions Bank

2008-10-24T19:05:00.000-07:00

Another night of poor sleep! Wow getting out of the PICU has been great but boy Katie and Kelly could use a good night sleep. Katie had to pee about every 2 hours and still is unsteady on her feet, so everytime she had to go, so did Kelly. (Katie is so going to kill me for putting that in)

Katie complained of some soreness in her rib area and was going to have a CT Scan to check it out. Katie thought she probably just strained it laughing too hard! How great is that? (Not the strain, the LOL for Katie)

Physical therapy has been working her hard and they are going to be moving her to the Rehab floor sometime between now and Monday. Just waiting for a bed to open up. Katie has been up walking the halls, building her strength back up.

Through all of this, Kelly has been at Katie's side. She has just received her last paycheck and is using FMLA to keep her job. Her expenses (gas money) utilities and bills haven't stopped while this has been happening.

An account has been set up at Regions Bank (any branch will do) under the Rideout family name to help with expenses.

Anyone can contribute just by walking into a Regions Bank and stating they want to make a donation to the Rideout family. Anything you can contribute would be really appreciated. As always you prayers are needed and appreciated!

Kelly and Katie are fighting the fight of their lives to bring this wonderful little girl back. That is what they need to be able to give their all to right now. Let's lift some of the load for other things off Kelly's shoulders!!!!

In everything give thanks, for this is the will of God in Christ Jesus concerning you
1 Thessalonians 5:18

Work, work, work

2008-10-22T14:55:00.001-07:00

Wow! what a day. Katie got moved out of the PICU! yeah!!!!! Her new room is 3504 on the 3rd floor. It should be much quieter at night and more spacious for all those cards and stuffed animals. Now she can have balloons and flowers too!

The docs had their big meeting with the family. They are pretty much on the same page. The neurosurgeon told Kelly that there was a 15% chance of another stroke if they tried to do the brain biopsy. The really shook Kelly. There won't be a brain biopsy being done unless something really drastic changes. Listening to the docs discuss Katie really shook Kelly and she had a little time where she cried. Her brother and father gave her great support today. Kelly has been so strong through all this and today has been a really hard day for her. Prayers and hugs are definitely called for!

Katie is undergoing intense physical and occupational therapy. She is learning to brush her teeth and hair and put on her clothes mainly using her right hand. The docs said "physical therapy is going to work her ass off!" They want her in the hospital for at least another 2 wks of intense physical therapy.

Overall, lots of good stuff happened today for Katie but a really ruff day for Kelly

He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul
Psalm 23:2-3

Thanks!

2008-10-20T22:21:00.000-07:00

Poeple came armed with buckets, brooms, rags, lawn mowers and more! Thanks to all who participated in helping the Rideouts settle into their new place. Erin was awsome as our director. Boxes got organized and put away, the rugs got shampood, the lawn got mowed, the cupboards and dishes got washed. Even Sadie's cat box got cleaned. Even the sign on Erin's door (don't come in) was removed as her room got organized and unpacked (that girls got some shoes!) What an incredible crew, thank you, thank you, thank you!

The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'
Matthew 25:40

2008-10-19T23:39:00.000-07:00

Saw Katie last evening. She was intently coloring a pretty picture and getting on her mom for not getting her picture colored. We talked about her bedroom at home and how she would really like it (and her dresser) painted a cheerful color. (She could use some cheering) She couldn't decide on a color and finally decided on "what ever". Emma says Katie likes pink. What do you think? Katie is really pleased with all the cards and posters people have made and sent. It makes her new room in the PICU look less scarey. The orthopedic folks are going to come up with something for Katie's left foot as she has "foot drop" and if it stays like that, her achilles tendon will shorten and make it hard for her to walk. So she will get a brace or "moon boot" to help stop that. She was taken off one of her blood pressure medications and everyone seems pretty pleased at how she is doing. She was pretty tired as the PICU was really loud the night before and she and Kelly didn't get much sleep. Hopefully tonight she can catch up.

pray without ceasing; Thessalonians 5:17

Unpack the Rideouts!

2008-10-19T15:40:00.000-07:00

Let's get the Rideouts settled into their flat! We need to clean and unpack the Rideouts into their new flat. Kelly will have a key available on Monday the 20th so if anyone can come help, I'll be there about 4pm till around 8pm. Come for any or all of that time. Bring any cleaning supplies, mop, broom, dust clothes you have. 5315 S Broadway. If you are facing the building it is the flat on the left. Erin will be their to help direct where things go.

This is a real tangible way to help and won't take long if we all pitch in!

Ask, and it shall be given unto you, seek and ye shall find, knock and it will be opened to you.
Matthew 7:7

Great news!

2008-10-19T15:29:00.000-07:00

A CAT scan was done and the haze on Katie's lung was totally gone! Talk about the power of prayer! So no surgery. The Docs decided the cyst in her sinus was benign(not bad) and probably had been there for a long time so that was put on the back burner for possible removal at some future date. They have taken Katie off her blood thinner shots. Yeah!!! She will be on a blood thinner pill instead. Her IV antibiotics are also changed to pills too. All of this is really great news. Katie has been really down the past couple of days. She could really use some prayer for her emotional state. The shy smile we love so much is really having a hard time shining right now. She did eat an Imos pizza and salad, surely that's a good sign right?

Be strong and courageous, do not be terrified, for the Lord your God is with you where ever you go. Joshua 1:9

Get it together docs!

2008-10-17T12:33:00.000-07:00

Well chemotherapy started last night and so far Katie is doing ok with it. No nausea or anything.
The docs though are not on the same page as can sometimes happen at a big teaching hospital. Several things have shown up on Chest xray and a cyst has shown up in that nasty sinus infection. Some of her docs want to explore those things further. That would mean stopping the chemo and blood thinners. That is super risky and might not reveal anything! They are going to have a big pow wow and give Kelly the straight scoop. It is enough to make a person go crazy!
Please continue to pray and lift the Rideouts up for healing, peace and comfort

The Lord is my shepard I thall not want, He makes me lie down in green pastures. He leads me besides still waters, He restores my soul. Psalm 23: 1-3

Oct 16th

2008-10-16T18:34:00.000-07:00

MRI done! whew, those tests are really loud and scary but Katie's repeat MRI got done around 3pm today. Unfortunately the news was not good. Katie's blood vessels were in worse shape than before. They are more narrow, meaning it is harder to get blood through them to the brain. Since the steroids did not have the effect the docs had been hoping for... chemo is going to be started tonight.

Katie is still in the PICU but if you go in and turn to the right you will be in for a surprise. Katie got moved to a new room in the PICU. One with a window! #2218. I think being in the hospital is finally getting to our ray of sunshine girl. She is tired and mad and sad and sick of being sick. I asked Kelly if there was anything (short of the Jonas Brothers visiting in person) that might cheer her up or at least distract her but nothing came to mind.

We are going to get a work group together to get their flat cleaned up and unpacked. If you can help, let me know. We'll probably do it next week one evening. We could use all the help we can get!

Do not worry about tomorrow for tomorrow will worry about itself. Each day has enough trouble of it's own. Matthew 6:36

Remember to pray!

2008-10-16T12:28:00.000-07:00

Yesterday was a crazy day! There was so much going on and none of it was fun for Katie! The sinus infection that Children's found is now being treated by IV antibiotics because they feel it is alittle "weird" looking and it's placement in her sinuses is further back than what they thought. So with all the different medications Katie is on (Dopamine-to get her blood pressure where they want it, antibiotics for the sinus infection and various others) she needed a central IV line. What that means is a special IV that is threaded into a major (big) blood vessel. It is called a PICC line and was put in her right arm. With the various ECHO cardiograms done, they showed a small hole in her heart. The docs don't think that this caused her strokes but since she has had strokes they want to close the hole up. That is for the future though. They wanted to do another MRI so see if anything had changed with her blood vessels in her brain and make sure they didn't miss anything but Katie was having no part of it. They gave her medication to help her calm down but it didn't do a thing! She was so upset that they cancelled the MRI yesterday and rescheduled it for today. They are going to give her a short acting sedative so she won't remember a thing about it. I hope that helps. The machine is so loud and it is so closed in that it really scares her!

On the home front, Kelly wanted to say a special thanks to everyone who is helping and looking out after Erin and Mary.

If you didn't know, Kelly and the girls had moved like the week before all this happened and everything is still in boxes and the flat needs to be cleaned and set up. Obviously Kelly doesn't have time to do this. Maybe we could get a group together and get this done for them? Kelly has to get another key made to the flat and then we could do it. Let me know if you want to help.

The other thing to think about is the fact that while Kelly has been living at the hospital with Katie, expenses haven't stopped. Maybe we could do a bake sale to help with this? Thoughts?

Let me know if anyone has other ideas to help- Susan Gaffney 314-481-2302

Trust in the Lord with all your heart, He will be with you where ever you go.

2008-10-14T22:15:00.000-07:00

A better day today! Katie had a better day today. All the docs are pretty much on board with her diagnosis of vasculitis but have differing opinions on what her treatment should be. They adjusted her steroids up and want to wait to see how that works. She is stable and they are really happpy about that. Mom nixed the idea of a brain biopsy when they told her they might not get the right part and even if they did it would not change the treatment they reccomended. Now I know we all think we are losing our minds, but nobody wants to on purpose! Katie got her hair washed, which had to feel good. She got a pink volleyball that her team dedicated to her too! All in all a stable day!

Matthew 19:26 Jesus looked at them and said, ".......... with God all things are possible."

2008-10-13T22:35:00.000-07:00

This is the first note on Katie's blogsite. I created this site per Kelly's request so she could get information out to everyone regularly and reliably. I am Katie's Girl Scout leader Susan Gaffney and the mother of a little girl (Emma) who counts Katie as one of her bestest friends. I will post things on here daily as soon as I get information from Kelly. Kelly will post as she has time and energy to. Between us, we hope to keep you up to date.

We'll go back and give you history of this story on the next posting but for now we just wanted to get a site up and running. For everyone out there, you have to agree, knowing Katie is a real treat. She is a fabulous 10 year old with an infectious smile and sweet disposition. She is loved by all who know her. Every mother wants her for a daughter and every child wants her for a friend. She loves Jonas Brothers, Hannah Montanna, kittens/puppies and volley-ball among other things.

This past week, Katie had some headaches. Don't we all? Nothing that really stood out as worse than your normal headache. Then her left arm and leg started giving her trouble, her smile became lopsided. Through this Kelly was trying to get her evaluated and helped. What could cause a healthy 10 year old to do this? Well St Alexius didn't know, St Louis Children's Hospital didn't know. Katie's pediatrician knew this wasn't right, Kelly knew this wasn't right (certainly not due to a sinus infection which Children's had diagnosed) Kelly kept pushing till someone acknowledged this was serious.

Cardinal Glennon Children's Hospital has finally given Kelly a diagnosis today. Most of you know that Katie has had several small strokes, probably over a period of time. No one knows when they started, there is no way to tell. What has caused Katie to have several small strokes that have affected her left side is what is called Vasculitis. It is a very rare condition and there are many types and forms but none of them are good. The underlying cause of the vasculitis is due to hyperactive immunological damage. (which basically means your body is attacking itself) Immunosuppressants may be used to stop it. The Rheumatoidologist has reccomended Chemotherapy for treatment. Vasculitis can affect any body organ at any time and can cause alot of damage. Untreated, the prognosis is very grim. The diagnosis is not a absolute but so far all the docs are agreeing that this is what has attacked our Katie.

Katie has been a major league trooper through all the testing so far. She has gone through more testing than most people do in their entire life. She has had a CT, MRI, spinal tap, blood work, more blood work, angiogram, echo and more blood work. There is surely more but that is what I know about. Through it all Katie has bravely smiled and can explain it to any and all. She is amazing!

This has been really hard on her sisters, Erin and Mary. They have been a major support to Mom while trying to maintain all their school work and help keep Katie from going stir crazy in the PICU (Pediatric Intensive Care Unit)

What you can do? Pray, Pray, Pray and then pray some more! Keep in your heart:

I can do all things through Christ who strengthens me." Philippians 4:13
God is our refuge and strength, a very present help in trouble. Psalm 46:1

That is all I know currently
I'll update this later today after I talk to Kelly.