Diary

April 2001

Symptoms of the disease...

1. Rash

2. Gottron's papules on knuckles, knees, and elbows

Jona was misdiagnosed for several months thereafter.

January 2002

Jona started having a lot of muscle weakness.

January 30th Juvenile Dermatomyositis diagnosis was made.

An EMG was performed to confirm the diagnosis.

February 2002

Jona had a Barium Swallow test at Texas Children's Hospital, which revealed no abnormalities.

March 2002

Jona was not responding to oral treatment of 20mg Prednisone daily, Plaquenil 100mg daily, Zantac (2ml) daily, and Methotrexate weekly. Therefore, she was admitted to Texas Children's Hospital for Methylprednisone pulse therapy. A PICC line was placed in her arm for weekly Methylprednisone pulses at home.

July 2002

At our request the PICC line was pulled because there was swelling around the line in Jona's arm that could not be explained. The line was only being maintained at this time because Jona had finished the Methylprednisone pulse weekly treatments.

September 2002

Jona has a lymph node behind her left ear that has always been about the size of a pea. After a Methotrexate dose we noticed that it was about the size of a bean. She has been sick off and on lately with various things between UTIs and colds. The lymph node was checked throughout the next few months periodically. The lymph node moved between the fingers easily and seemed to cause no concern among doctors who checked it. Jona is now off of Steroids but still taking the Plaquenil and Methotrexate.

December 2002

Jona relapsed. Her labs were up almost as high as they were at the onset of this disease. At this point there is no PICC line...just adding oral steroids back into the mix of medication. Dr. Perez added 25mg of Prednisone daily as well as 1mg of Folic Acid and increased the Zantac to twice a day.

January 2003

Jona was admitted to the hospital for 4 days of Methylprednisone pulse treatments. She didn't respond well physically and we wonder if this isn't worse than the onset or if starting on oral steroids instead of being more aggressive wasn't a mistake. We would like to avoid another PICC Line.

February 2003

We now have another PICC Line after not being able to start the IV needed for another Methylprednisone pulse.

March 2003

On the 18th of this month Jona's Solumedrol ball would not go through. The home health nurse checked the line. It was not kinked, so after talking to Dr. Perez there was concern of a clot. We took Jona to the Neonatal ICU at Cabrini Hospital in Alexandria, La to have someone look at it. It was determined there that her arm was again swelling around the line and that it was hard after treatment of whatever Solumedrol did get in through the line. They felt it should be pulled in case of clot, infiltration, or vascular irritation. It was pulled and no clot was in the line. A CBC was run to check for infection and there was none. The arm continued to be swollen. Dr. Perez had the arm checked by Dr. Seidel at the next visit to Texas Children's and there was no clot. It was determined that the vein was likely irritated from the line or maybe the material the line was made of was the cause for the irritation. A few weeks later Jona got a new baby sister.

April 2003

Jona had another major event in her life after the addition of a sister. Her Daddy was deployed to Iraq for 9 months. At this time we also moved back to my hometown so that I could have some help with the girls while Jeff was gone. Jona continued her oral therapy and regular visits with Dr. Perez. She seems to be doing well otherwise.

January 2004

Jona experienced her first major loss of her great-grandfather in November. Now we were informed that Jeff would no longer be coming home this month. His time has been extended until further notice. He hopes to be home by July.

May 2004

Unfortunately in a set of labs we noticed Jona's labs climbing, Her CPK was 235 (normal 24 - 170) and her LDH was 351 (normal 94 - 250). Her AST was 48 (normal 0 - 31). We took her in to see Dr. Perez and the disease had flared. This time we were much more aggressive immediately. Jona was put in the hospital for 4 days of Methylprednisone pulses. During this time Dr. Perez also had an x-ray of Jona's upper body done as well as some lab work to rule out any cancer in the lymph nodes. This was a small concern since Jona had not been sick and there was not any definitive reason for the flare. All tests came back normal. I ask if just the stress of the past year could have caused this and Dr. Perez said there was no way to know for sure but it was as good of an explanation as anything else. Jona was sent home with 30mg Prednisone added to our Plaquinil. She is also taking 2mg of Folic Acid as well as 5mg of Leukovorin 24 hours after her weekly dose of Methotrexate. The Leukovorin was added because the dose of Methotrexate was increased to 15mg (0.6ml of a 25mg/ml vial). Fortunately, Jona responded well to this treatment and we are hoping to get through this without another PICC Line. A Red Cross message was sent out to Jeff and the Army did send him home early from Iraq.

June 2004

We moved back to Ft. Polk so that if it did turn out that we were going to need another PICC Line we would be set up for one. As luck would have it, so far so good.

September 2004

Jona is continuing to do well. She has started taking Dance class and participates fully without complaining of any pain. She will be finished with her oral steroid treatment soon. We have also learned that Jeff will be starting school in Virginia in January. Dr. Perez is working with us to get us to the appropriate Pediatric Rheumatologist in the area of Ft. Lee. She is also helping us determine the best location to try to get back to for Jona's care after Jeff has finished his school if we are unable to get back to Ft. Polk, La. or to Ft. Hood, TX. Jona is an Exceptional Family Member with the military, which requires her to be at a location where she can receive the care that she needs from a Pediatric Rheumatologist.

January 2005

We moved to Virginia for Jeff’s CLC3 course. Dr. Harry Gewanter followed us for Jona’s medical care. He was a fresh insight into this disease. He gave a lot of hope for a disease free future with Jona. Jona has done very well medically. We are hopeful that soon we can get off of Methotrexate.

May 2005

Jona had a mild flare. Only our LDH was elevated. Dr. Gewanter felt that we as parents were very on top of our game. He treated her differently than what has been done in the past. He gave her 30mg of Prednisone 3 times a day for a week, then dropped it to 2 times a day for a week and then once a day. We weaned from there. She responded to that treatment perfectly. We have never seen her bounce back so easily. This is a great learning lesson!

July 2005

I think that we found our first calcinosis. It is hard for me to tell if it is truly calcinosis or what. It is about the size of a pebble on the outside of her right elbow. Just above the scar from a PICC line that she had. I’m a little nervous about that…I am sure it will be fine.

August 2005

Saw Dr. Perez…the bump is indeed calcinosis and before seeing Dr. Perez I found another calcinosis in her upper right arm on the inside just around the muscle. I told Dr. P some of what I heard about calcinosis and how it signifies the end of the disease. She said she can agree with that, however, it also is a pain and can complicate things in a flare. She said she hasn’t seen a bad case of calcinosis in a long time, perhaps because they are catching the disease much earlier than before. Otherwise…it was a great check-up. Jona also started school this month. She is big now…in Kindergarten. The second day of school she wanted me to drop her off at the door and not walk her in. She said to me…”I’m big now, I’m in Kindergarten…I can go by myself!” and I was heart sick. What a day that was.

December 2005

We flared again…URGHHHH! It was a mild flare. The only elevated muscle enzyme was the CK and it was up to 465. She had been doing cheerleading class and I was hoping the ache in the groin area and the upper shoulders was from that. She could still get up off the floor with her hands on her head. She also didn’t have muscle weakness in the typical places but…I know why we flared. Jona started Kindergarten. She was sick a lot, either with a cold or allergies. So, she missed a lot of Methotrexate. Most of the time she was getting it every other week or every 3 weeks, but this last time she went 5 weeks without it and we flared. That was a lesson learned. Dr. Perez got in touch with Dr. Gewanter to find out how he did the last flare for sure. She started Jona on 20mg 3 times a day and we continued that for a week and then checked labs. Muscle enzymes were great, BUT our WBC count was up to 16.9 from 7.8 the week before. WHAT IS THAT about??? They think it is a reaction to steroids so will repeat in a week. Nobody seems to be concerned except me. Go figure. I worry alot. :o)

January 2006

WBC still climbing…WHAT IS THE DEAL?!?!? Now I am getting frustrated. It is up to 31. Not understanding this. Neither are the docs. Now they think that this is related to an infection or something. Her urine is clear. Not getting it. The next morning she woke up with her chest hurting. Dr. R, her pediatrician, started her on antibiotics and did a chest x-ray, pelvic, and abdominal ultrasounds. We are getting labs again in the morning after 2 doses of Augmentin. If it isn’t down Dr. P says to prepare to come to TCH for hospitalization. Thank God it came down to 16 (I think…Dr. Riser has that info). YAY!!! Dr. P dropped us this week to 20mg 2 times a day. Now 4 days later she wants to drop again to 20mg daily. I reminded her we just dropped a few days ago. She wants to drop anyway. I know she knows what she is doing so we did…Saturday morning we woke up and we can’t move. Jona is worse than ever. We spent Sat. at Scott & White. This is crazy. Labs not showing anything important except a high WBC. Okay, we are in the hospital on 600mg Solumedrol. We are waiting for a bed at TCH and they will transfer us. Here is our week:

Sunday, Jan 8

Dr. B, an Infectious Disease doc comes in. He thinks it is a Leukomoid reaction to steroids or a viral infection. Not really concerned. He also feels we came of steroids too quickly. I don't know.

Another doc, can’t think of his name, who is a pediatrician that specializes in Oncology and Hematology came to see us. He said he sighed a sigh of relief when seeing her labs. The fact that the WBC is high is not itself concerning. It becomes a bit of concern when they throw out abnormal cells, which he sees none of at this time. He said the cure rate for children with Leukemia or Lymphoma in most cases is 80-90%, Whatever, I would just prefer we stay out of that all together. He isn’t worried though. He feels it is viral due to the ulcers in her mouth. In which case it could take a few weeks to see the WBC return to normal.

Monday, Jan. 9

We were transferred to TCH via ambulance. Jona did great. I was so proud of her. We arrived at TCH about 7:40pm. It was a four-hour ride. She was a trooper. We had to go in through ER, which is a story in itself, but by 9:30 we were in our room. Her WBC had gone up to 20 that day. They continued fluids.

Tuesday, Jan 10

Jona woke up vomiting…URGHHH don’t know if she has a virus or what. They gave her Zofran for that and it helped. She had a blood draw and IV change. What an eventful day. We found that her IGG was 535, Her WBC was 20.5, Platelets were 300+ and her muscle enzymes were normal. Dr. P says we will watch IGG every 6 weeks. She still thinks this is all viral that started in her mouth and is running through her system. Not concerned with WBC as long as it stays the same or decreases. As for the platelets being lower than normal…they are still in normal range. She and Dr. D feel that when there is a virus the platelets become sticky so it could be that the platelets are sticking together so it looks like less than there really is. As for lower IGG…this is caused by Methotrexate and Prednisone.

Wednesday, Jan 11

As for IGG shot vs. IVIG…there is difference in concentration…we have to give IVIG if given. Changing her drug of choice from Methotrexate would not allow her IGG to increase naturally because other drugs to replace this would be harder for her. We also cannot back of to giving Methotrexate every other week… it has to be all or nothing. The reason that Dr. P does not follow the Van Willibrauten test or F8 is because for her it gives mixed info. As for giving IVIG…it was decided we will not give IVIG until absolutely necessary…meaning, she comes in with a bacterial infection, high fever, and low IGG. Then it will be a life saving measure.

Thursday, Jan 12

We stopped IV fluids today. Jona is doing well. She seems to feel great. We will be doing another blood draw in the morning. If all is well then we will go home…if not we call in a hematologist. Meg came down with the same vomiting that Jona woke up doing the other day. I have tried to stretch myself…I feel bad for Meg and Jona…both babies are sick and they both want mommy but are in 2 different places.

Friday, Jan 13

YAY! WBC is 16. We go home. But…now I have this stomach bug and Nana came down with it last night. Crazy. We’ll get a hotel tonight and drive home tomorrow.

Tuesday, Jan. 17

YAY! WBC is down to 11.4. It is now in normal range…yes, it is on the high end of normal…but nonetheless, it is normal. We hope that by next set of labs we are at our normal for Jona, which is around 7. All muscle enzymes are great. I figure we will start back on Methotrexate tomorrow.

February 2006

Jona is doing so much better. We are now starting to wean off steroids. She has been released to start back in dance. She is VERY excited. We are homeschooling and it is working out great. She is doing so well. She is also starting piano lessons and getting involved in church choir as well as other children's activities at our church. Her strength looks great...her rash is better. Labs are perfect...WBC is normal...floating between 9 and 12. The mold content in the air around here is high and we know from allergy testing prior to JDM diagnosis that she is allergic to mold. Perhaps that has something to do with the increase in WBC, but it isn't high...so that is great. Thank God for such great docs and so many friends who send up lots of prayers.

June 2006

We went to camp, Pine Cove at Crier Creek. It is a family camp...our first one. The girls had so much fun!!! Jona did great in the activities and met some really fun friends. Meg made friends too, even at 3 years old. We were sad that Daddy wasn't with us...still in Iraq, but we had fun. In fact, we had so much fun that we all cried when it was time to leave. We are already reserved for the same week next year. Can't WAIT...and this time Daddy will be with us. All is well with Jona's health. We are completely off steroids and just doing the regular cocktail of meds now. Her strength seems good. If all goes well we plan on returning to school in the fall.

August 2006

TIME FOR FIRST GRADE!!!! Jona started first grade at a private school. We felt this would be better as there are only 8 students in her class. Less children....less germs! She loves her teacher so that is good. She seems really nice. We also are active in Dance. Our Dance class is preparing for the Nutcracker. Hopefully Daddy will be home for that.

November 2006

WELCOME HOME DADDY!!! Daddy comes back from Iraq. Boy did we miss him! Well, this month is just a lot of family time! We have so much catching up to do! Jona is still doing well. We are on the same cocktail of medicine. Hopefully we can get off the Methotrexate in the spring if all goes well.

December 2006

Jona turns 7 YEARS OLD!!! My big girl is just growing so fast. I cannot believe it. It just seems like yesterday she just turned 2 and we were finding out about Juvenile Dermatomyositis. WOW! Of course we did the whole slumber party thing and then did Seaworld! It was fun! She had a blast!

January 2007

Jona decided she missed her old school. We put her back in the public school she was in last year when she got so sick. She loves it. She is like a different child. All of her friends were there from last year. Some of her best buddies are in her class. She adores her teacher. The school has been awesome as they already know her situation. We went straight in to the 504 meeting to get that squared away. I almost wonder if I should have just started her back here in August. Well, no point in second guessing. At least she is happy. We discussed all the sunscreen and hand sanitizing issues with the teacher. Jona also brings a water bottle to school as water fountains are off limits to her. Apparently that was already in place for the class anyway as Texas gets some really hot days. She has had so much fun this month! Things are still good healthwise. She is just a happy, healthy 7 year old...what more could I ask for.

April 2007

Jona is STUDENT OF THE MONTH! YAY, JONA! We are so proud of you. She was chosen by her teacher. She has been getting all As and her attendance has been great up until the second week.

We came down with what originally was thought to be pneumonia. We started with a fever out of nowhere. One day we were healthy and the next minute....fever. This happened on Sunday. I don't like waiting around when Jona has fever so we went in on Monday to the doctor. She had a chest xray, which at the time looked like mild pneumonia "nickel size". They said it was bacterial probably because it showed up like a cotton ball. Viral pneumonia as I was told rarely shows up on xray. PCP Pneumonia shows up like rice or snow over the lungs. SO....we get a shot of Rocefin and are sent home with Omnicef. We are also taking Mucinex to cough everything up. By Wednesday she sounds so much worse. We took her in to make sure the pneumonia wasn't worse...guess what??? It was gone! That is either serious prayer, really strong medicine, or a mistake. They also did labs on Monday. We got those all back Wednesday...guess what else???? They were all normal. Not even an elevated WBC count! HMMMM! PRAISE GOD!!! However, no they are thinking it is a virus....urghhh!

The following Friday we go up to see our doctor at Texas Children's Hospital. It was a nice visit. EXCEPT....her muscle strength (lower body) is a little less than normal....oh I hope we aren't facing yet ANOTHER flare. Her labs were perfect with awesome muscle enzyme levels. The dr. thinks it could be muscle drop out. The way I understand this is that we are born with only so many muscle cells and over time we build up those muscle cells to make the muscles larger and stronger. Well, the beauty of this disease is that it kills muscle cells...if I understand this right. I am no doctor by any stretch of the imagination, but it seems as maybe Jona has lost some muscle cells and so that is muscle drop out. Well, another scenario according to the doctor could be that she is just now with a larger frame. That is more to get up with. She grew taller fast these past few months. Anyway....a MRI and Bone Density Scan are in our near future. The MRI will tell us if there is inflammation in the muscles and if so that could indicate disease activity, but if her enzymes are still normal then it could also mean we are dealing with something more than JDM...I pray that is not the case. If there is no muscle inflammation then that means it is "Muscle Dropout" or so they call it. In that case we would just start physical therapy to build up what she has. She is also not very flexible so we will need to work on that as well. If it is Muscle Dropout than we will hopefully come off of Methotrexate. The doctors see this as a good place to be...facing this MRI. I see it as a scary place to be. Oh, did I mention. Jona is terrified of IVs now since her last stay in January 06. Guess what??? They are going to have to sedate her for the MRI because it takes an hour and a half and she needs to be perfectly still. That means IV. We have her in therapy right now to help her deal with stress and do some biofeedback to calm herself down. We'll see how much that therapy has helped. Keep her in your prayers PLEASE!!!!

May 2007

SCHOOL IS OUT!!! Jona did so good this year. She was Student of the Month. She made the all A honor-roll. We are so proud of her. We also went to camp at the end of the month. WE HAD SO MUCH FUN!!! She loves everyone at camp. If you ever want to go to a fabulous Christian camp you should check out Pine Cove in Texas. They are so wonderful. It was such a break for me too. It was just refreshing. They didn't even let me cut the girls food. They did it all. There were tons of fun games to play as a family but the best part was seeing God work in the girls. We had "Fabulous Family Fellowship" everyday. That is how the day started after breakfast. It is amazing to see God developing relationships there. It is like a piece of heaven. We cannot wait to go again next year and she will get to go for the first time to big girl camp for a week there without us. The kids camp, separate from family camp, starts for 3rd grade and there is an awesome on coming to Columbus, Texas called the "Outback"! We cannot wait. Check out their website sometime at www.pinecove.com.

MRI was postponed until August....we'll keep ya posted. Please continue to pray for her.

August 2007

WE MET HANNAH MONTANA!!!!!!!!!! Wow! Thank you Make-A-Wish. It could not have come at a better time. We did her MRI. It did not come back as we expected. There was disease activity....URGHHH! And we thought we would be coming off meds....NOT!!! That's ok. Now we will be going to Chicago to see Dr. Lauren Pachman. She is supposed to be a leading doctor in JDM because she does research too. I hear the visits are long and thorough. Hopefully she will give some positive insight.

Well, on to the GREAT STUFF! There is so much to say about Hannah Montana/Miley Cyrus that she gets her own page. My goodness...what an amazing role model for little girls. She was so kind. Jona and Megan had a blast. We also went to Universal Studios and the beach. We saw all the sights. We got to see the Stars Walk of Fame. We saw the "Hollywood" sign. We met Miley at the end of the trip which was great because if we had met her in the beginning everything else would have seemed really dull. HA!

MRI experience...well, have a seat, grab a drink, and prepare yourself. It was TERRIBLE!!! Poor Jona Bear. Ok, so we all know she is terrified of IVs. We've done therapy for that for some time for this. Ok, so we had a plan.... they were going to have her smell "cherries" to put her to sleep and then insert the IV to give her the dye and keep her asleep. However, she only knew about the cherries and that was the agreement between all doctors including the anesthesiologist because when we tried to discuss the IV she freaked out and was having no part. At that point they all decided (including us) we would just ...as far as she was concerned do the cherry smell good stuff. The next day the anesthesiologist came in. We were meeting him for the first time and I was not too thrilled with his attitude and that surprised me considering we've been with Texas Children's Hospital for almost 6 years. Then he really did it...he told her that she was going to smell some cherries but that is not always going to happen in the future. Then he was going to start her IV. OH MY GOSH! And to top it off....before he entered I reminded the nurse of yesterdays plan that her other doctor did include the anesthesiologist in on and he did agree to. I watched her remind him. It was so bad several people had to hold her down as he held the mask over her face. Can you imagine the therapy to get over this. It would be understandable if he had NOT been in on the whole plan from the beginning. It gets even better...she woke up during the MRI because they didn't keep her asleep. By the time we got to her in recovery where we were supposed to be when she woke up she was trying to calm herself from the whole situation MRI. You could tell she had been crying so hard and the anesthesia was still wearing off. IT was TERRIBLE!!!! News from the MRI showed muscle activity that none of us, including her doctor were prepared for. Not only are we not coming off meds...there is a consideration to add more.

School started and I went back to teaching. Had I even had a clue that her MRI after I took the teaching job was going to turn out as it did I would have NEVER gone back to teaching. I did it because Jona was going to be there and Meg wanted to be in "big girl school" with Jona so I figured I might as well be with them. Well, hopefully it will all still work out. We love the school and Jona's teacher, Mrs. Medart, is amazing and wonderful. Hopefully this will be a good year. She did wonderful last year so I feel really comfortable. Meg went to "big Pre-K" for about a week. She was just too little for that and there were too many kids for her. She is back to Wee Care at our church and because it is a Mother's Day Out program her teacher is going to keeper until I get out of teaching for the day. Praise God for that.

September 2007

No more school! I had to resign. Jona's disease is more active than we want it to be.....SO....Jona also ended up with an infected spider bite and another calcinosis. Good news. The one on her elbow is starting to dissolve so it won't give us problems. YAY! We are homeschooling. Jona really wants too. School was wearing her out. We are having fun with it so far.

November 2007

CHICAGO...wow, that was an experience. It was cold....not at all like Texas. The doctor visit was 6 hours. She saw physical therapists who measured her strength, muscle length, range of motion. They did alot with her and that took an hour. She also had pictures of her nailfolds. Apparently, right behind the cuticle you can see blood vessels 'dropping out' because this disease also effects the vascular system. They will take pictures every visit so that we can watch to actually SEE the vasculitis hopefully improving. Jona thinks that will be cool. They drew 13 tubes of blood. She also had xrays done. We'll get the results back in a couple of weeks. We left Chicago 2 days before Thanksgiving. We spent Thanksgiving with Nana and Paw at the lake. The girls love it there. They get to ride the golf cart and have alot of fun. We hope you all had a very happy Thanksgiving. We also had the Hannah Montana concert in San Antonio. We have pictures of that as well. WOW! The girls were so excited. Jona thought we were going to celebrate Daddy's birthday and had NO CLUE we were going to see Hannah Montana/Miley Cyrus in concert...thanks AGAIN to the Make-A-Wish Foundation.

December 2008

We started the new drug, Cellcept. So far so good. Jona also got put back on the steroids and she HATES it! Did I mention that she REALLY HATES IT!!! She had a Birthday Party...Hannah Montana Karaoke Party. You can see the pictures on our "PHOTOS" page. All the girls had a blast. It was a great Christmas. Life is good.

March 2008

Cellcept must be working. Jona's MRI showed 80% improvement in disease activity. YAY!!! We are going to give her some more time but we are coming down off of steroids now. PRAISE GOD!!! The steroids are making her so frustrated on all different levels. She is nervous about it because she is worried that she will flare if we come off of them too fast, but so far so good. She is doing GREAT! She is getting ready for her dance recital in June. She is a busy little girl. Jona and Megan are both being homeschooled and love it.

July 2008

Cellcept must be working really well because it in combination with her chemo has dropped her WBC low. We are now trying things without the chemo for the first time in 6 years. She is doing well, otherwise. Her rash is almost COMPLETELY gone and she is very excited about that . Dr. P said that there is a possibility that once we hit puberty we could go into remission. Wouldn't that be great. She will be 9 in December and already wants a training bra for her birthday. I guess by then it will probably be time for one, but we are so not ready for all of that. We'll see what happens. Her strength is better but she needs help still with flexibility. What a trooper, though.

August 2008

We start homeschool! We joined a co-op here so every Friday we will go and the girls take some classes. Jona is taking a class on Music, The Wild, Wild West, and Colonial Times. Megan is doing "Kindergarten". It seems like a lot of fun. They are also learning the piano. Meg is taking tumbling and loves it. We are starting ceramics as well. Between activities and church we are staying very busy and social. We see Dr. P at the end of the month and will hopefully get a great check up. We'll keep ya posted.

September 2008

We did have our check up with Dr. P. and Jona will be off her chemo. for a trial period. The combination of Methotrexate and Cellcept along with the other drugs was suppressing her immune system too much. Her WBC was low and not improving until we removed Methotrexate from her cocktail of meds. However, we also foudn that she is now anemic. So even though we are removing a medication we are adding now Iron and Miralax to prevent constipation from the Iron. She is also taking Prevacid to protect her tummy from all the other meds. Iron is better than Methotrexate, though.

Dr. P was pleasently surprised at how well Jona looked and her improvement of strenght. We are trying to set up Home Health to do PT with her. Her flexibility needs some work.

Let me brag a minute...my girls are such a great little girl. Her and Meg have been so good to each other during the start of the school year. We are doing co-op for homeschool and both girls LOVE it. We are also doing "Girls in Action" or "GA"s at church. Meg is doing "Mission Friends". We started going to PWOC on base and the girls are also making new friends there. Our weeks have been very busy. That is a good thing, though. Another excitement we have is that Daddy got picked up early for Major. YAY! Now we are just waiting for his official promotion. Ok- well schoolwork calls. More to come later...

May 2009

We are off chemo. YAY! Now, keep praying. Also, pray for me...we are riding horses now. I know, could we have picked a different sport??? She was great at dancing. Well, she loves these horses. So... I cannot keep her in a little bubble like I would like. It will be ok. I have to remember. She is borrowed - she really belongs to God. That's a hard pill to swollow. He will take care of her though!

August 2009

We went for our MRI. We are holding good with labs off of the Methotrexate and there is no flare. Also, for the first time EVER we have a MRI that shows no active disease activity. It is just risidual damage left from the disease that we are seeing now. SO...we are coming off of Cellcept, the experimental drug. Jona is a little nervous. We have never been without meds that she can remember. She doesn't know what this is going to be like. It is new territory. I think her anxiety is even more because Jeff leaves AGAIN for Iraq for the third time. URGHHH!

Guess what??? Remember I mentioned the horses...she was thrown off. Luckily she was wearing a helmet. That is all I am going to say about that.... BREATHE! Remember, she is borrowed.