Update on Allison

Allison has been on the Prednisone for two weeks as of Friday.  She started out with 60 mg a day and now we have tapered her down to 30 mg a day.  We will continue to slowly taper her down and hope that her body adjusts and holds it own.  She could have a flare as we taper down so we monitor how she is feeling closely and keep praying that all is well.  As we are tapering her down from the Prednisone we are increasing her Methotrexate.  

Allison continues to feel well and the fevers, joint pain, rash are gone.  She is doing most of the things she has always done.  She does tire easily and has to rest at times, but it is so much better than how she was doing.  Allison also has gained 8 pounds.  The Prednisone is definitely increasing her appetite.  We are going to work on that a bit and try focusing on making healthier food choices.  It is another mind set change for her, because for so long we let her eat anything just to get calories into her shrinking body.  Now, we have to try to slow it down but she is wanting to eat all the time from the Prednisone. 

We are all excited because we leave July 5th for vacation and Allison should do very well since she is feeling so good.  We  had all been very concerned about how she would handle it mentally and physically but now it should be fine.  Everyone is excited to go to Disneyland.  I am sure we will keep the blog up and update you as we travel as to our adventures.  

Lastly, we continue to be so greatful to our family and friends ( old and new) who reach out to us and to Allison with love, support and mostly prayers.  Thanks to all of you who touch our lives in so many ways.  We appreciate you so much.  

Leslie

 "The Mom" 

JRA Camp

Last weekend we went to the JRA camp.It was lots of fun.Every family got their own cabin with a bed for the mom and dad and two bunk beds.At meals everyone would meet in the dining room and have their meal.They made really good food there was bacon,salad,bread,cake and lots of other stuff.The kids would be seperated into age groups.So we weren't together but it was okay.Each group got to do one really fun thing.My group got to go horseback riding.It was lots of fun.One night they had a hawaiian band play because the theme of the camp was Hawaii.The next night they had a talent show and a fashion show.Each group had to do something together for the talent show.I couldn't do it because i didn't feel good.So i sat with my mom and dad.Mitch's group did a really funny thing.They had one kid pretend to be a reporter with nothing to write about and lots of other people with jobs they couldn't do then they all got together and jumped off a fake bridge but the reporter pretended to but didn't then when all the other people jumped of the bridge the reporter said,''wow ten people jumping off a bridge what a great story''

They also had a bon fire.Everyone roasted marshmellows and told scary stories.It was really fun and yummy.Jacob made a friend that is about his age.They live in salem so their pretty close by.But it was funny Jacob just went up to the kid and said hi your my friend now and then they were friends.We had to leave but we defently will go back next year.

I'll have mom post some pictures from camp later. 

Allison

WOW!! Hard to believe

Well, the prednisone is an amazing drug.  As a friend whose daughter has systemic jra said to us, "It is a love/hate drug."  Well, right now we are experiencing the love.  It is like we have our daughter back again!  I can't believe how quickly it has taken effect in her.  Yesterday, Allison and I went shopping for about 4 hours.  We took a few breaks to rest but we walked and shopped and just had a great time.  For her to be in a store 30 minutes has been pushing it until now.  Last night we all at dinner together. Most evenings by dinner Allison is feeling so tired and in so much pain she eats lying on the couch.  We all sat at the table outside together and enjoyed the weather and Allison being with us and feeling good.  She was up until about 9:30 and feeling just great, smiling at bedtime (definitely not the norm).  No pain, no exhaustion.... it is almost scary.  We know there are side effects we have to be cautious of with this medication but, I can't even tell you how happy we are to see her enjoying life again and just being a kid. 

We are praying for minimal side effects and that once we start to taper it will not be too difficult for her.  It will be nice for her to be able to enjoy the summer and great since we are headed to the JRA conference and Disneyland in a few weeks.  

Thanks to all of you for your prayers and concern for Allison.  We really appreciate you all.

Finally Pictures of the Quilt!!

Here are pictures of the quilt Mrs. Bailey's 5th grade class made for Allison.  We have promised the pictures for awhile now, sorry it has taken us so long to get them on the blog.  

Allison holding the quilt folded in half.  Each student made a square of the quilt and dyed the fabric in their square.  The colors are amazing.  

Here is Allison and Jacob holding up the backside of the quilt.  It has monkeys doing gymnastics.  Allison loves it.  She likes monkeys very much and loves to do gymnastics so it was the perfect combo.  The fabric is also a flannel so it makes it extra cozy.  At the top by Jacob's hand you will notice where Allison's name is sewed into the quilt.  We hadn't even noticed that until we were taking the pictures.  Very cool!!

Here is the quilt layed out and you can get an idea of all the wonderful colors and blocks the kids made.  The quilting is very detailed and beautiful.

                             It is kinda hard to see but here is the back and the crazy monkeys.

This quilt is so special to Allison and to our family.  It will be something she will treasure for a lifetime.  Thanks again to all the students who took the time and care to make this quilt for Allison.  You are all AWESOME kids!!!!

Doctors, Doctors, and More Doctors

It has been three long days for the whole family making multiple trips to Portland and stressful decisions about changing Allison's treatment and switching Pediatric Rheumatologists.  After three doctors' appointments, three days in a row for Allison, I think she is ready to "throw in the towel." Here is a "brief" run down on what's happened over the past few days and a synopsis of where things are heading with Allison.

Today marks the beginning of the 22nd week of Systemic JRA for Allison. (148 days for those who are keeping score at home.) This past weekend, Leslie and I (yes this is Allison's dad making my first post on the blog) both expressed significant concern regarding Allison's situation with her fevers continuing daily, no lab work to tell us how she's doing, and no scheduled visit with a doctor for at least another three weeks. So we decided that this was going to be the week to focus on making some things happen. On Tuesday I contacted her primary care physician, Dr. Irvine and "spilled my guts" regarding our concerns; he got us in the next day, on Wednesday, for an exam and a full set of labs. Also on Tuesday, we got in touch with Dr. Kingsbury's office at Emanuel Children's Hospital, the only other Pediatric Rheumatologist in Oregon, and requested an appointment. They were very accommodating and were able to squeeze us in today. In addition, Allison had a previously scheduled appointment with her pain management specialist at Dornbecker's, also located in Portland. 

On Thursday we received the results of Allison's blood test. Her inflammatory markers were all still very high (Sed Rate of 91 (0 to 20 is normal) and CRP of 125.2 (0 to 4.9 is normal)). Her liver function tests were normal (this was a concern of ours because of her being on Methatrexate), and our PCP was also very concerned because she was so anemic. He suggested some changes to her Aleve and adding an iron supplement to assist with the anemia. Unfortunately, as Dr. Kingsbury reminded us today, Allison's anemia is related to her inflammatory disease and is to be expected. Any supplemental iron will unfortunately not do anything to change her anemia. 

Thursday's appointment at Dornbecker's went well. We utilized some "extra" time at OHSU to do some research at their medical library (thank you Brian for your assistance with this). There's a lot to learn about this disease and unfortunately limited material to review. 

Friday's appointment with Dr. Kingsbury went "well." Allison was not feeling good so this unfortunately made the appointment more stressful for all of us and an uncomfortable and painful experience for her. Half-way through the appointment, Allison couldn't stand it any longer, so Leslie took her to the van to lay down while I finished up the meeting with the doctor. All total, he spent over two hours with us, answering our questions and defining his course of action for her care and treatment. The end result is that we now have a new Pediatric Rheumatologist for Allison and her medication list has grown substantially. As of this evening, she is now taking Prednisone, Methatrexate, Folic Acid, Aleve, Forzofran, AcipHex, and a daily vitamin. And the wait begins to see if the Prednisone will control her fevers (this is the only medication that may possibly impact the fevers), and to see what negative side effects she will have to deal with as a result of taking it. 

So, Allison went to bed with a 100.4 temp tonight. After about 90 minutes of sleep, she just woke up all sweaty as her fever had broke for the evening. 

The next few days will be interesting. We're praying for a significant change in her condition and an easy weaning off of the prednisone. I'm sure that no one is more tired of the daily fevers than Allison. For her sake, I really hope that this portion of the disease process will end soon. Unfortunately, who knows what's coming around the corner once we move past her current situation.

Sorry about the length of this message. A lot has happened rather quickly for which Leslie and I are both thankful for. Keep praying and we'll try to keep everyone posted as things progress.

John 

JRA Convention & Disneyland Trip

The national JRA conference is in Costa Mesa, California in July. We had considered attending months ago but then decided Allison's condition wasn't stable enough yet to go. Well, through a series of events we have been offered a scholarship to assist us in paying for the trip from our local Arthritis Foundation Organization. With the convention being so close to us and Allison's condition stablizing somewhat, this became an offer we couldn't refuse. A big plus for the whole family is the convention is very near Disneyland.

We have many concerns about Allison being able to handle the trip and travel so we have decided, as a family, to make the trip longer and to take our trailer. This will allow us the flexibility to go at a pace that Allison can tolerate, to stop when needed, and not be tied to airline tickets. It will also allow us to take with us many of the comforts from home that Allison needs. Allison will have to do Disneyland at a slower pace and take frequent breaks, but with making a careful plan, we think it can be a fun experience for all of us.

Keep us in your thoughts and prayers as we prepare for this trip that Allison will stay healthy and continue to improve. We will be putting more details on as the time gets closer.

Only 1 1/2 days left of school!!!!

Doctors Appointments:
I forgot to mention Allison has 3 doctors appt. now scheduled for this week.

1. Wednesday - she will see our regular doctor, David Irvine for blood work
2. Thursday - she will see the pain doctor in Portland
3. Friday - we will be seeing Dr. Kingsbury in Portland for a second opinion. He is the only other pediatric rheumatologist in Oregon. We are happy they are able to get Allison in so quickly.

New Additions

On Allison's blog you will find some links that are new. The first section contains links to blogs of other JRA kids we have become connected to since this journey has begun. You might find it interesting to see what other kids are dealing with.

The second section has links to JRA resources. If you would like to learn new information or some additional information about JRA and what is going on with Allison and other kids that have JRA, some of these sites are very informative and helpful. CARRA is a group made up of pediatric rheumatologists around the country. The National Arthritis Foundation site has lots of information as well as the local AF site that is also listed. We will add more links in the future.

Mrs. Bailey's class surprise

Sorry to keep you waiting to learn about the surprise I got this last week. I kinda forgot about it and then in the evenings I haven't been feeling as well, but I did make it to school all five days this week.

Last Monday Mrs. Bailey's fifth grade class at my school gave me a surprise. They gave me a quilt that they made. Each student made a square on the quilt. They dyed the fabric different colors. It is very colorful, comfy and I love the monkeys that are on the flannel on the back of the quilt. The quilt is beautiful and I was so surprised. They made a book for me that had letter in it from each students. I really like the book and like to read the letters they wrote. On the front is a picture of their class holding the quilt.

Each year Mrs. Bailey's class makes a quilt and gives it to someone in our community. They decided this year to give it to me so it was very cool.

I know Mrs. Bailey's class checks my Blog so, I want to Thank them making the quilt for me and writing the letters. They are both very special to me. Thanks for the encouraging and nice things you wrote in the letters.
THANK YOU
MRS. BAILEY'S 5TH GRADE CLASS!!!!!!!!!!!

I will post a picture of the quilt and me tomorrow. I am not feeling great tonight. Friday, Saturday and tonight I have ran higher fevers again. I feel good during the day but feel bad at night.

Thanks for reading my Blog!
Allison

Quick update

Hi!
I thought I would do a quick update for Allison. The end of last week was rough for her. She felt well over the weekend and she has gone to school all three days so far this week!!!!! She is feeling good this week. She is very tired in the evenings and sore but doing great during the day. We are hoping that maybe the medication is finally kicking in and helping her.

Monday the fifth graders in Mrs. Bailey's class presented Allison with an amazing surprise. I can't tell what it is because she wants to write about it and post pictures. It definitely lifted all of our spirits.

She is feeling so good tonight her and I are going to West Albany's Graduation to see our dear friend Allie graduate from high school. We weren't sure Allison would make it but so far tonight she is feeling good and really wants to try so we will give it a shot. It is so nice to see her feeling good and doing "normal" life activities.

Well, gotta go and watch the hockey game (Stanley Cup: Pittsburg vs Detroit) for John. He is taking Mitch to his hockey game in Portland, and of course the games are the same night.

Watch for Allison to update soon to share her surprise with you.

Leslie
"The Mom"