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Thursday, June 4, 2009 8:39 PM CDT

I put the newest update on Stephanie's own journal at www.caringbridge.org/visit/stephanie1

We are on night 7, she did not have the endoscopy or colonoscopy today, instead she is the first scheduled patient for the morning, in addition she has had a gastric emptying study earlier today. We are at RMH now, room #1, they have been so great. We went for a homemade turkey dinner tonight there, with all the fixings. It is touching how much they are there for so many families in need. I will try to update again later tonight on Steph's page. There were many upsets today. (((hugs)))

Wednesday, June 3, 2009 10:13 AM CDT

Good Morning,

Stephanie just got back from Ultrasound. We are now sitting in her room awaiting on the other doctors, or whomever decides to drop in on her today. No word on what time or how long that may take. Tomorrow she is scheduled for the endoscopy and colonoscopy but I have no idea how she will drink the contrast they need her to drink. Dr. N said she needs to drink something or they can put in a gastric tube through her nose for this test. I'm sure she does not want that to happen!!! I don't want to be the one to deliver that news either so I will let them tell her. She may very well need that tube with all of this vomiting though. :(

We heard from Ronald Mcdonald house this morning. They have a room they said was opening up early this afternoon and told me I was first now on the waiting list, so that is such a relief. They told me they would call me today as soon as it is ready so waiting to go over there sometime today. The motel was just getting to be expensive, could no longer afford it, I've spent soooooooooo much money while I've been here I shudder to think about how to pay our regular bills when we return home. So this is a blessing and just in time.

I keep on praying they will figure out what the problem is, because Stephanie is just hurting so bad. I miss the other three girls sooooooooooo much!!! Caity is having a hard time and keeps asking me if I will be gone "forever" and if she will never see me again! That really broke my heart as I miss her so much too. Kristen misses me too but she doesn't reveal her feelings so much, and Meagan just asked me if I wouldn't mind bringing her candy, (minature M&M's) whenever it was that I decided to return!!! lol Meagan is already talking about her upcoming birthday on June 23 and how she wants to go to build a bear, that and the candy. lol :) I keep on laughing when I think about it, she is truly the spoiled baby. What a stinker!! In any case I miss them like crazy! Their last day of school is on June 5th, so only two more days!!! I hope to be reunited with them soon!

I will try to update later when we know what is on the agenda and speak with doctors. Thanks so much for praying for Stephie as it means so much!!!

Love,

Mary

Tuesday, June 2, 2009 7:24 PM CDT

Hi Everyone,

Night five here at the hospital is taking it's toll and I feel as if I have been here for 5 weeks instead of 5 days! I only wonder how poor Stephanie must feel, at least I can leave the room when I need to, she is in too much pain to leave her bed.

We met with the immunologist today again he said endocrinology is supposed to come look at Steph but they haven't come today. However GI did and Dr. Novak wants to do an endoscopy and colonoscopy on Stephanie. Those are scheduled to be done Thursday. The bone scan did not show any damage or areas of concern other than some increased uptake near her shin which can be explained by the inflammation she was having in that leg recently. Which is why she was on more steroids.

They still don't have any concrete answers for me as to what is wrong but they are trying to figure her out. As always she is puzzling to the medical professionals. Tomorrow morning they are going to do some diabetes testing and a second abdominal ultrasound. She is still terribly sick after eating or drinking anything at all and this is despite the zofran they keep giving her.

Please keep on praying that they find the answer to all of this!!! God is the great giver of wisdom and we will need a lot of it to help Stephanie!!! Thanks for checking in!!! (((hugs))) will update again tomorrow!!!

Love,

Mary

Monday, June 1, 2009 5:38 PM CDT

Hi Everyone,

I just met with another Rheumatologist from Dr. Elders office, he said that the CT showed an inflamed and fatty pancreas and usually they see that with one of two conditions being Cystic Fibrosis or Diabetes. Now what is most puzzling is her labs look alright, but he did say it was possible that she could have CF with all of her symptoms even without the typical pulmonary symptoms, even though rare, he even said that can cause severe arthritis like she has. The second scenario they want to explore is Diabetes, which would make sense because of her weight, but whats strange about that is her blood sugars look good on the labs, so maybe a pre-diabetes thing??? Only time will tell.

In any case he said they were putting their heads together and would work on figuring out what is going on, and not discharge Stephanie until there was some type of treatment and next step plans in place. They are treating Stephanie very well and not giving up as they feel this is something chronic that has went on far too long. Stephie still cannot hold down any food or liquids and is extremely ill, in between her torodol and Morphine, but she is trying to be brave. She has been having some crying fits today mainly do to her steroids making her emotional, she is so depressed about missing out on her field trip tomorrow, more like devastated about it. We talked to the social worker and she is going to see what she can do to help Stephie take her mind off of it.

Oh I almost forgot, We had some VERY SPECIAL visitors today, The Florida Gators Football Team came by to visit Stephanie!!!! They autographed a little Gators purse for her and chatted with us for awhile. I think that was the highlight of my day, it was AWESOME - well that and chick-fil-a that I ate for lunch. :) Gotta have some high points, it feels like we have been here an eternity and truth of the matter is that this is only the 4th night. :(

Please keep on praying for my girl and for us too! Still no word from Ronald Mcdonald house even though I am on a waiting list for a room there. It is getting difficult and we cannot afford anymore nights at a motel so I really need accommodations, hoping that tomorrow will be the day or the Dr's here figure out Stephanie and we can go home!!!

I will update more tommorrow, still no GI consults.

Love,

Mary

Monday, June 1, 2009 10:39 AM CDT

Please send Stephanie a Care mail here at the hospital to let her know you are thinking of her and praying for her! Electronic mail is delivered to the pediatric patients every weekday and I would love for her to have a bright spot in her day, she is suffering so much and is so depressed. copy this address here and paste into your browser bar:

http://www.shands.org/public/message/default.asp

Next simply put in the name Stephanie Templeton room number is 4520, make sure you also choose Shands Children's Hospital (UF) (Gainseville) from the drop down menu. I think this would just brighten her day so much!!! Please keep on praying for her!! God Bless!!!

Stephanie just had her morphine and is much calmer and pain free while on this medication. The social worker stopped by and had a chat with Stephanie and I believe that made her feel a little better. She is supposed to come back in a bit to chat with me as well. Child life just stopped in and brought Stephanie some canvas and paints, which thrilled her, she loves art so much. So that is good. They are due to come get Stephanie for the first part of her bone scan in just a bit so we are awaiting for them to come get her. I was told GI would probably come by sometime this afternoon. Yet we're not sure when. Stephie needs a new IV put in, the old one is very leaky so the nurse thinks that between the combination of her steroids and her Morphine it is just blown, therefore will need to be changed. Stephanie would love some electronic mail here or phone calls, she is often depressed. We are on a waiting list to stay at the Ronald Mcdonald house, although we're not sure how much longer she will remain in the hospital. There are so many unknown and unresolved issues that need to be addressed. Stephanie continues to have extremely severe abdominal pain and joint pain. Rheumatology is considering the possibility of putting her on Enbrel, or Remicade. They need to know though if she does indeed have a GI issue. Still awaiting word on the muscle enzyme testing and the CT scan. They're concerned this might be more abdominal lymph nodes from the autoimmune process, just like last year. We will keep everyone posted. If anyone wants to call Stephanie and wish her well she does have her own cell, her number here is 352-249-8190 or mine to get most recent updates and her status is 352-476-3171. (((hugs)))

Sunday, May 31, 2009 2:26 PM CDT

Monday 1:03 am 06/01/09

Stephanie is doing so much better while on the morphine, it completely takes away her pain. They are staggering the toradol doses with morphine doses to give her more relief and tonight we got some smiles from her for the first time in over a week. She is getting more high dose steroids for the severe swelling in her knee and will get another bag of them tomorrow evening. In addition they have her on zofran for nausea which isn't really helping as she continues to vomit absolutely everything she attempts to eat or drink so they have her on continuing IV fluids as well. She also got another dose of her methotrexate in the hospital and they are giving her all of her other medications and doing the best they can to keep her as comfortable as possible. We hope that maybe GI can shed some light on what might be happening to her, and we should be able to have them come see her sometime Monday. We are also still awaiting word on the Ct scan and the results of the muscle enzyme tests which were send outs and they are trying to schedule her a bone scan this week. I wanted to post a few pics of her from the hospital tonight and also to ask all of you to keep on praying that she improves. She doesn't seem to be getting any better and it is concerning for all of us. Also if you don't mind follow the link at the bottom of my update and send her a care mail to her room, the electronic email will work wonders for her spirits I am sure. We have a social worker scheduled to come visit and talk with her tomorrow. Very obviously to suffer so much pain would be quite depressing. Especially for a 12 year old kid. I will update more later. Thanks for checking in and please sign the guestbook!!! We are not sure that anyone is checking on her other than a couple of dear friends thank-you so much. (((hugs)))

PS> Thank-you for buying me dinner Anne and Bryan it was delicious and so very unexpected, that was sweet of you both to think of me and I appreciate it so very much and love you bunches!!! I also want to thank the both of you for taking such good care of the other girls while I am gone, I know they will get plenty of hugs from you both and that eases my mind more than you know!











---------------------------------
Good Sunday afternoon,

They came and got Stephanie for her CT scan about 2:00 am this morning, her doctor was just in but did not have those results yet. She did say Stephanie would be meeting with the GI docs and be having a bone scan scheduled in the next couple of days. Stephanie's pain is more severe than I have ever seen it before, pain medications are not helping at all, her Doctor just decided to put her on Morphine and Stephanie just had the first dose a few minutes ago.

She is moaning in pain constantly, so pray she finally has some relief. She still cannot hold down any food or liquids and is really just suffering!!! Keep on praying hard!!! I will let you know when we have more to report. (((hugs))) and thanks for checking in!!!

Love,

Mary

Please send Stephanie a Care mail here at the hospital to let her know you are thinking of her and praying for her! Electronic mail is delivered to the pediatric patients every weekday and I would love for her to have a bright spot in her day, she is suffering so much and is so depressed. copy this address here and paste into your browser bar:

http://www.shands.org/public/message/default.asp

Next simply put in the name Stephanie Templeton room number is 4520, make sure you also choose Shands Children's Hospital (UF) (Gainseville) from the drop down menu. I think this would just brighten her day so much!!! Please keep on praying for her!! God Bless!!!

Saturday, May 30, 2009 0:03 AM CDT

Greetings from room number 4520. Stephanie is being kept comfortable on Toradol and they just took more blood. Her doctor was just in and told me they want to check her muscle enzyme levels, and in addition want another bone scan done and a CT scan of the abdomen. They are also going to have GI come in and would like Stephanie to have a scope. Additionally, she is concerned about Stephanie's left knee which is extremely swollen so she wants to try some more high dose IV steroids.

The Dr said Stephanie may have something overlapping the JRA and that Stephie is so complex that she just believes they haven't figured her out completely yet.Sounds as if we will be here for a few days at the least.

Stephanie continues to vomit every time she tries to eat, but her pain is being managed so she is in much better spirits!!! It is only bad when the medicine wears off and she is in need of another dose.

Father Bower from the hospital chapel came and paid Stephanie a visit this afternoon, anointed and prayed over her. We were so appreciative that he stopped in to visit with her and pray over our baby girl. He said he would return again soon. I don't have much more to report, but Stephanie is hanging in there the best she can! Thanks for praying and we will update again soon. (((hugs)))

===========================

Good Morning,

Stephanie is in room 4520 at Shands Children's. She is hurting pretty bad but they've got her on IV pain medications and started an IV with fluids. They want to have the
GI do a consult while she is here, thinking she may need another endoscopy and they took some blood already. One of the doctors wonders if it could be her pancreas, we are just not sure at this point but they will be running some tests in the coming days while she is here.

We are exhausted, it has been a long day and Stephanie is up crying because her stomach is hurting so much, despite the pain meds. So sad :(

Please keep on praying for our girl!!!

Love,

Mary

Friday, May 29, 2009 10:47 AM CDT

Hi Friends,

Stephanie is not doing well at all. Last night she developed extreme pain in her joints, face, neck, jaw and shoulder blades in addition to the extreme abdominal pain and her skin looks as if there is a red sunburn over it. We had a hard time getting her out of bed this morning because her pain is so great. We were getting ready to call an ambulance when she managed to sit up and let us help her to the car to take her to the doctor. Dr. Hiremath got a hold of Dr. Elder who believes Stephanie is going through Steroids Withdrawal, it does not happen to every kid, but she has seen this before she said. Therefore since Stephanie's pain is beyond anything they can give her they want to admit her back to Shands Children's Hospital at UF today! They want to start her on IV Pain medications and fluids and watch her closely. Not sure how long any of this will take but we are so worried. I have seen Stephanie in a lot of pain before, but never have I seen her suffer like she is right now. I believe that this is the most pain she has ever been in and Dr. Hiremath believes so too. Please pray for my baby girl! We will try to give updates from the hospital, they are going to work hard to clear a bed for her ASAP.

Love,
Mary

Ps> 352-476-3171 my cell if anyone wants to call

Thursday, May 28, 2009 8:00 AM CDT

1:41 pm Thursday

We managed to avoid Hospitalization!!! Keeping our fingers and toes crossed right now. Stephanie's pediatrician thinks she has another bout of gastric inflammation so he put her on another drug called Zegerid 40mg/1100mg and said to take it with her regular dose of Zantac and told us not to give her the prevacid for now. I have managed to get her to drink a little more and she did give a urine sample. Her urine showed the slightest hint on dehydration but nothing absolutely critical, so we just need to push fluids. We also heard from her Rheummy who wants her to have a GI consult, and since she is already an established patient with the GI docs she has an appointment with them for Monday. Within a few hours of taking the Zegerid that Dr. Hiremath prescribed she was able to eat a small cup of chicken noodle soup, her first meal since Sunday night however now she is feeling very nauseous and ended up vomiting it all back up. :( Her temp today at the Dr. Hiremath's office was 98.8 so really no fever to speak of and it is running about 99.1 here at home. So right now we are just watching her and praying she begins to heal and feel better! Her stomach still aches she says. Please pray for my girl!!! (((hugs))) In will update again soon.
---------------------------------

Hello Everyone,

Stephanie's pediatrician called last night, neither one of us have heard back from Dr. Elder or her office concerning Stephanie. Anyway, being that we're both concerned about Stephanie's well being at this point he asked me if I wanted him to admit her to the hospital last night or if I wanted to wait and see how she did overnight and possibly admit her back to the hospital today. I opted to wait and try to see if I could get Stephanie to drink some fluids. She did manage to drink about 6 ounces last night of some flat sprite before complaining that her tummy hurt. However she still refuses to eat because her pain level is just too great. Last week at the pediatrician when they weighed her she was 245 pounds, Wednesday she weighed 237.5 and this morning she weighed 234 pounds, so she is lost 11 pounds in one week. Now possibly some of this was fluid as she did have the lasix on Sunday, but still it seems excessive and right now she is going on 4 days with absolutely nothing to eat and no appetite and it is all I can do to force her to drink fluids, and very little at that.

The good news is that she has not developed significant fever as of yet, her temp has been hovering around 99 degrees. So we are watching her closely. Stephanie absolutely does not want to go back into the hospital and has begged me to try to convince Dr. Hiremath not to readmit her. She thinks that if she needs anything for her stomach they can possibly to it on an outpatient basis. This is hard for me too, especially because I do not have anyone to help me with the other 3 girls who also need me and I too hate hospital admissions. Yet I think that with everything going on we may have no other choice. We are going to see Dr. Hiremath in a little bit so we will see what he thinks and Stephanie can talk to him about how she feels.

Please keep praying for Steph! We are still VERY concerned about her. Something just isn't right! Thanks for checking in and I'll update again soon!

Love,

Mary

Tuesday, May 26, 2009 7:53 PM CDT

Wednesday 2:40 pm EST

We heard from Dr. Hiremath this afternoon, he said Stephanie's Gallbladder looks fine, said that is what they were scanning for, but did not mention how everything else on the Ultrasound looks. Instead he asked me how Stephie was feeling and told me he needed to call her Rheummy Dr. Elder because he wants to arrange for her to be readmitted to the hospital since she is not doing any better. He wants her to have IV fluids since she has not eaten anything or had anything to drink since 5:00 pm on Sunday. She still has no appetite nor even the slightest desire for food or drink and we do not want her to become dehydrated. She is losing weight from being so ill, having knee and neck pain and we need to find out whats happening. Please keep praying. I will keep everyone posted when they call me back today!

Love,

Mary
---------------------------------------

Good Evening Friends,

We were discharged from Shands Children's at 6:30pm Monday night however Stephanie is not feeling well at all. I don't know if she had trouble with all of the IV Steroids or what, but she developed severe facial and all over flushing, and horrendous abdominal pain. They also gave her Lasix (for excess fluid)and a Pneumoccocal Vaccine before she left because her titres were low and she is more at risk for certain types of pneumonia being on the Methotrexate. They did not start Enbrel just yet, as her Rheummy wants to play it by ear and is going to strongly give it much consideration.

Stephanie did not eat breakfast lunch or dinner yesterday and again has not had a bite to eat today. Her last meal was at 5:00 pm Sunday, she has been crying out in pain for the last 3 days and today she was ordered a stat abdominal ultrasound by her pediatrician which she just had at 5:30 pm this evening. The ultrasound took 40 minutes, not sure if there is anything abnormal or if all of these medications or even the JRA itself are wreaking havoc. We will have the results first thing in the morning and the tech asked me three times if I had an appointment to bring Stephie back to her Dr. to which I told her no but that he would call me when he received the results and she replied that was good.

Stephanie's doctor said if things do not improve he wants to readmit her to the hospital. He seems concerned, she is not herself and is unable to communicate because all she can do is cry from the pain she is experiencing, she has cried all day long and finally just fell asleep 30 minutes ago. I'm concerned because she will not eat or drink anything, she cries that it makes it worse. I feel helpless.

Pray for an answer and wisdom, and that she feels better soon! We are so worried!!!


Love,

Mary

Saturday, May 23, 2009 3:18 PM CDT

Hi Everybody,

We arrived at Shands at 9:30 am this morning and Stephanie received her first bag of IV steroids at 1:00 this afternoon. She is in pain from all of her joints hurting, but they just brought her some pain medicine too. The doctor already warned us that by tomorrow Stephanie will become very moody and either she is going to turn very mean and yell at all of us, or she will become very emotional and cry. We're not sure which it is going to be yet, so we are so eager to find out. lol only joking of course, as both options sound so very attractive!

All kidding aside, she is doing well other than the swelling and a little bit of pain, nothing that cannot be managed here. She is actually sharing a room with another girl who is a year older than Stephanie, so we won't be able to stay the night here with Stephanie. Yet we've got a hotel room across the street and can hang at the hospital with Stephanie from 9:00 am - 9:00 pm, during visiting hours.

If anyone wants to call us or email us you can. We would probably love the distraction as it passes the time! Our Phone number at the Hospital is 352-265-0045 and room number is 4537B - my cell is 352-476-3171 if for any reason I am not in the room with Stephanie, I will always have the cell though no matter what so feel free to call as it is an unlimited plan.

Thanks for checking in and continuing to pray!


Love,

Mary

Friday, May 22, 2009 2:15 PM CDT

Hi Everyone,

Sorry to keep all of you hanging! I just did not know what was going to happen up until about ten minutes ago. Pediatric Rheumatology just called us and Dr. Elder wants to admit Stephanie to Shands Children's Hospital for three days for IV Steroids and to start her on ENBREL which is a third line treatment for JRA, especially since she is having so many problems with the Methotrexate. She will receive three steroid IV infusions, each 20 hours apart while she is an inpatient to get the inflammation under control and then get started on the Enbrel, which will take about two weeks to begin working.

So Saturday morning at 9:30 am EST we check into Shands Children's Hospital. She is still having tremendous pain and her ankles are horribly swollen, but she is trying to keep herself distracted as best she can right now.

I'm bringing my laptop to the hospital so I should be able to update on her from there. I do have to say that God's timing is wonderful, at least this is going to be over a three day weekend and Dr Elder just happens to be the Dr on call so she can attend to Stephanie personally!!! God is so so so good!!!! Thanks for the prayers, I will update again from the hospital with our room number and status!!!

Love,

Mary

Thursday, May 21, 2009 7:53 AM CDT

Good Morning Friends,

I wanted to ask for continued prayers for Steph this morning. She had developed mouth sores as of last week from her Methotrexate which are EXTREMELY painful! Her pediatrician prescribed her something they make from a compound called "Magic Mouthwash" and although it helps slightly, it still has not alleviated them nor the pain entirely. I would like to thank our good friend Alisa for telling us about Magic Mouthwash though, because any relief, even temporary is a big help right now. She has seen her pediatrician Friday and yesterday about the sores and he is supposed to be conferring with Rheumatology about them but in the meantime he told us to keep her on the Methotrexate.

The second thing and perhaps scarier to me is that she has a new lump under her ribcage which is painful to her. The lump feels much larger than the ones she had in her tummy last year, so I don't really know what it is. Whether it is a lump, a cyst or an enlarged organ etc. All I know is she still is suffering from severely swollen ankles too and we are just about to head out the door back to the doctor about it. I have no clue what is going on right now with her body and it is frustrating. Especially since she is on all of these medications that cost close to a thousand dollars a month. I don't know if her condition is causing these issues or all of these medications they have her taking to treat her condition, but I do know she is suffering!

Please take the time to say a prayer for her that she gets to feeling better and the doctors have the wisdom to help her. I will update after we visit with the Dr. today. God Bless!!!

Love,

Mary

Tuesday, May 12, 2009 8:07 PM CDT

Hi Again Everyone,

Yeah another update, I must be on a roll or something here!
Stephanie seems as if she is feeling a little better than she was thanks to the prednisone and antibiotics, but she is still hurting and we have a new issue to contend with now with her self esteem thanks to the effects of her Methotrexate. Her long, curly and beautiful hair is beginning to thin considerably and is coming out in clumps seemingly even from the bottom and this makes her feel very self conscious. While I do not believe she is actually going to go bald, her hair has suddenly thinned out so much that I thought she cut it because it looks uneven and shorter on one side than the other; and it was so long before, it is almost shocking to me how quickly this has happened. This is making her feel sad and self conscious because she doesn't want to appear different from anyone else her age, which I completely understand. She has always had such pride in her hair and took care of it, so she is having a hard time dealing with this effect. Please say a prayer for her to come to terms with this, I don't like seeing her feel depressed, it saddens my heart so. I want her to know that she is still beautiful no matter what! I guess this will be yet another lesson for her that it what is on the inside that counts, and she has a lot, I pray she realizes it.

Anyway, just wanted to jump on here to ask for prayers for Steph, it seems relatively small in the larger scope of life, but it is a big deal to her.

Here is a couple of pics from earlier, Steph posed with her arsenal of JRA meds too! I tried to make her smile and I managed to succeed somewhat! :) I'm always happy to get a smile from her. Thanks for praying!!!

Love,

Mary and the Girls




Stephanie with her JRA Arsenal



The JRA Medicinal line up!

Monday, May 11, 2009 11:07 AM ET

NEW PICS, below update!!!!!!! :)

Good Morning Friends,

I just wanted to get on here for an update, as usual it has taken too long! Anyway, Stephanie has had severe ankle swelling this time in both ankles for almost a month now. It is similar to the time before where it looks like baseballs are in her ankles, there is just that much fluid. In addition it has been tough for her this last month to walk very far so she is needing her wheelchair at school due to her ankles and knees hurting her so much. She is managing here at home which is a blessing, but she is just hurting an awful lot lately. Dr. Hiremath her pediatrician conferred with her rheumatologist Dr. Elder at Shands and she is already at the maximum dosage of Methotrexate so therefore they will be working on another treatment plan or rather reformulating one so that hopefully she can experience better management of her JRA symptoms and hopefully some relief. In the meantime they added Prednisone to her Methotrexate and other medications to try and get her inflammation under control and this seems to help a little bit. However this last week she came down very sick with flu like symptoms so they now have her on an Antibiotic that treats bacterial infections as well because her ears look pretty infected.

So lots going on here with poor Stephie! Her next Rheumatology appointment is not until June 17th which cannot come soon enough. There is no way to get kids in on emergency basis since they are only there on Wednesday and Fridays and are absolutely booked solid. We can attribute that to them being only one of two pediatric Rheumatologists in the state of Florida!!! So basically whenever there is a problem like Steph is having, they have me bring her to the pediatrician and try to work closely with him on whatever the issue is over the phone. Sometimes it seems exhasperating to say the least.

The other girls are doing fine. They are all swimming like fish with the warm weather we have been experiencing! Even little Meagan has learned how to swim and dive under the water!!! I cannot believe Megs will be 6 next month, wondering where all of the time is going? Caitlin is doing really well, she is growing up big time. She is obsessed with Hannah Montana and we took her to see the movie last month the day it opened!!! She loved it and had a great time, she is always so enthusiastic about everything, I'm so thankful to God for how far she has come from where she started on her Autism journey. She still loves to sing too and she and her Best Friend decided they wanted to sign up for the school talent show and sing Love Story by Taylor Swift. lol Now, she gets embarrassed singing in front of strangers so I have no idea how she would be on a stage in front of a hundred or so people. I just imagine she would freeze up, because thats how she gets. lol But the idea is so cute, I loved how enthusiastic she was when she matter of factly mentioned it to me. :) She is so sweet!!!

Kristen is doing well, can you believe they already had High School orientation??? I can't believe she is almost ready for HS!!! Wow!!! That really blows my mind!!! lol She is into her friends right now and into being more secretive than before, the normal teenage stuff. Yet she still wants to spend time with me too, which is nice and I will take it and enjoy every minute of it while I can. We had a nice Mothers Day yesterday and I feel very proud of my girls not to mention extremely blessed to be their mom!

It was a day of handmade and store bought cards, handmade and store bought gifts, lots of hugs and even some chocolate!!! It was a wonderful day, but the best gift was truly having all of my girls by my side!!! :)

Well I better run, I want to thank everyone for continuing to check in on us! I do have a facebook too if anyone who reads this doesn't already have me, just look under Mary Templeton. I know many of you already do!!! :) Thanks for continuing to pray for us and our friends as well. So many need prayers each and everyday!!!

Love,

Mary and the Girls

Wednesday, April 1, 2009 10:32 AM CDT

Hello Everyone!

Sorry I have not posted in awhile, yet everyone here is doing amazingly well! So as the saying goes no news in good news! lol Stephanie is doing so well with the Methotrexate, she is like a brand new child and as long as she does not overdo it with her activities, things are much better for her! Caitlin is doing great as is Kristen and little Megs is doing well and has been healthy and uti free! Cannot ask for more than that, it is so nice to have a semblence of normalcy around here again, whatever that may be for us!!! :)


We moved again, it was for the best. We are sharing a big house with my sister and my nephew and it has a big caged in inground swimming pool where Stephanie can excercise her joints, so that is great. I can't help also but mention how much I'm enjoying the Jacuzzi tub in my bathroom here too. lol I wonder how I ever got along without one now, hehe!

I enrolled in school again, I start on my Master of Science degree in Couple, Marital and Family Counseling/ Therapy next Monday! I am nervous but also very excited to embark upon this. All told this will realistically take me appx 3 years to do, but I think it will be worthwhile to do and I believe I can help others who need someone to listen and guide them through their problems.

Not much else to report, but I would like to thank everyone who continues to pray for our family and continues to check in. We love you and pray for God to bless you!!!

Love,

Mary

Wednesday, February 25, 2009 8:55 AM CST

Hello Everyone,

We are still hanging in here, despite my lack of updates. I apologize for not getting here sooner, sometimes time really does get the best of me.

Stephanie went to Shands to see her Rheumatologist last Thursday. They decided to tweak her methotrexate level a little since she is always getting sick. So now they have reduced it slightly, we're hoping it will help. In addition they added a new medicine for her to rub on her painful joints. It is called Solaraze gel and is very expensive, what else is new? If I had to pay for all of her medicines out of pocket it would set me back $900 a month!!! It is unreal, I'm thankful we have help with all of this or I can't imagine what we would do. They also prescribed some special orthotic inserts for her shoes to help her toes which she has also developed horrible arthtiris in. It makes me feel so bad for her.

The Doctor told us that she believes Stephanie has Polyarticular JRA, the kind most similar to Adult Rheumatoid Arhtritis and Dr Elder told me I needed to sign her up for Children's Medical Services because Stephanie is chronically ill and CMS may help pay the costs of some of the things Medicaid may not provide. So we went to the main hospital and signed her up and CMS is urging me to apply for SSI for Stephanie so we are going to do that soon too. On another note, Stephanie won third place at her school for the Heinz Ketchup label decorating contest, we were so proud of her and she also is making wonderful grades despite missing so much school!!! She amazes me!!!

We just got back from the Doctor this morning with Meagan. She has had 3 UTI's in 2 months and her urine smells like ammonia, it is awful. She keeps having accidents at home and school so I had to go out and buy her some pull ups for the time being. The doctor put her on more antibiotics that she will take for the next 10 days however he said if she does not get better or if it recurs a 4th time then we need to send her urine to a lab. So praying that this all gets better soon for Megs, she is such a big girl and I know it embarreses her to keep having accidents.

Caity is doing quite well! She loves school and has a best friend this year who she plays with everyday. That makes me so very happy. Kristen is also doing good, although growing up very fast! She already is experimenting with the make up and is the typical 14 year old who knows more than her mom! lol

Thanks for continuing to check in and pray despite my slowness in getting this updated! We love you and will try to write again soon!!!

Love,
Mary and the Girls

Thursday, January 29, 2009 10:45 PM CST

Hi Everyone,

We are all doing great! Stephanie is feeling much better and is back in school which is wonderful although she is still having occasional joint pain any time she overdoes it. We found out that she has been walking "laps" around the school to try and get extra credit and that has largely been some of the issue because it is not something she should be doing with her condition so we had a talk about it and she is being more careful so as not to aggravate her joints.

Kristen is doing wonderfully and so are Caity and Megs. Although they sure keep me busy! I have not been feeling too well myself for the last week though. It started with a bad cold over a week ago now and although I seem to be over that I have been extremely tired and it is hard for me to stay awake after the slightest exertion and I could easily sleep 16 hours and I am not kidding, I can never in my life remember feeling so exhausted so I think I am going to get it checked out. I'm not at all depressed so not sure whats happening but I have had some other symptoms too and am going to have to visit a Dr myself soon however reluctant I am. Would appreciate some prayers this week!

Oh, I have some pictures at the end of this update finally. Not many but I was able to get a few, mostly of Caity and Meagan but I managed to get a couple of Kristen and Stephie too that they took of themselves recently. Thanks for checking in and praying!!! God is so good and we love you!!!

Love,

Mary and the Girls

Wednesday, January 14, 2009 7:54 AM CST

Hi Everyone,

We got in to see the opthalmologist yesterday and I'm so glad to say that Stephanie is fine, there is no damage to her eyes and she does not have JRA related Uveitis as her doctors feared!!! In fact her vision is 20/20, so we are feeling so relieved. Stephanie also says her eyes no longer hurt so whatever was happening was brief and is not a big deal. God is so so good. We do not have to see ophalmology again now until May.

Other than some lingering pain in her knees she seems to be doing well again and can go back to school tomorrow. She has been home since a week before the christmas break because of all these issues. I'm sure she will feel so much better just getting back to a normal routine.

I Wish that these medications didn't wreak so much havoc on her immune system, hopefully she can just stay healthy as that is half the battle at this point because with JRA being an autoimmune disorder she already has an overactive immune system which is why her body was attacking her joints, but then some of these medications she needs to take to calm down her immune response actually lower her ability to fight off infections and viruses. That in turn makes her susceptible to infections and once she gets an infection, as her doctor explained it to me, then her body once again goes into overdrive despite the medicine and it makes the joint pain even worse because the body doesn't know what it is attacking, as it is doing it's job battling the virus, but also attacks her joints in the process since her immune system is confused. Anyway that is how it was explained to me.

Kristen, Caitlin and Meagan are doing well. I will have to get some pictures up soon, everyone is growing so fast! Thanks again for praying and checking in!!!

Love,
Mary

Monday, January 12, 2009 11:53 AM CST

Hi Everyone,

Happy New Year, we are frustrated but pressing on the best we can right now with God's help. I was approved for unemployment for the next 5 months so breathing a little easier about the finances. However Stephanie has had one problem after the other since our last journal. Last week she began having severe arm pain symptoms and her arm hurt so bad that she could not lift it or even use it at all. It took her three days to even change out of the same clothing because it was causing her such agony to move it. An x-ray was taken which showed no fractures and all of it was attributed to more inflammation from her arthritis. it finally got better after about 7 days of pain this past Thursday. Then last night she developed stabbing pains in her eye on the way home from visiting Grandpa in Gainesville, she complained that her vision felt fuzzy and now is complaining it hurts her to look at the light and both eyes are painful. We just brought her back from the pediatrician who believes she is having more complications from her JRA and wants her to be seen ASAP by opthamology for a slit lamp exam. So he told us to keep her home in a dark room with sunglasses on, and told her to rest until he speaks to Rheumatology to see how fast we can get things set up. I'm awaiting word back as I type this, but it is making me feel anxious for her. Once vision is lost in JRA it is serious and to know she can't get it back once the damage is done worries me. I hope she will be okay, we need prayers right now. I will update again when we know more. Thanks for praying!

Love,
Mary

Tuesday, December 16, 2008 10:08 AM CST

Hi Everyone,

Stephanie is still not feeling well. She is having a horrible reaction to the steroids, severe facial flushing, sick at her stomach, horrendous tummy pain and a horrible headache. Last night her headache was so bad that she screamed for 2 hours with it and nothing would help. We brought her to the ER and they gave her an injection of a narcotic to help her because her head pain was so terrible that she said her vision was going blurry. She still has severe arthritis pain in her knees and neck, but the other arthritic pain seems to have abated. The pediatrician can only find fluid in the ears so maybe she has an infection brewing, as she keeps complaining that her ears are hurting very badly as well but there still does not appear to be an infection. She has also been running low grade fevers every night, so he prescribed Amoxicillin but the pharmacist warned us that it can raise levels of Methotrexate in the blood so we needed to consult with Rheumatology before she takes any, so we are awaiting word from their office as to whether we need to adjust that dosage on the Metho or get another antibiotic all together. :(

Poor Stephanie! This afternoon she is scheduled for her monthly labs to check her blood levels because of all these medications. She has not been to school since last Wednesday now as she is just feeling so miserable. Please pray that she is feeling better soon. Sometimes it feels like this is never ending and I know it has got to be frustrating for her especially; as hard as it is for me as a Mom to see my child suffering so much.

Thanks for praying and we love you. I will update again soon.

Love,
Mary

Thursday, December 11, 2008 2:10 PM CST

Hi Everyone,

I should have knocked on some wood before submitting my last post, sigh. Stephanie started hurting again badly yesterday and by last night and this morning had arthritis pain in every single finger and toe, ankles, knees, wrists, neck and shoulders. It is hurting her to walk or even move right now. In addition her hand and arm are tremoring, her pediatrician says this is because she has so much inflammation in her joints that it is pressing on the nerve and in turn causes the tremor. Anyway she now is on a course of steroids in addition to the others (methotrexate, leucovorin, celebrex, lyrica, planquenil, prevacid, zantac, and Tylenol and we have also added another ordinary folic acid supplement) We are on a wait and see right now and hoping the steroids kick in soon to alleviate all this pain and inflammation because if it doesn't work the Dr told us today that next steps would be to admit her inpatient for IV steroid treatment. We certainly do not want it to come to that. So would appreciate prayers for Stephanie that she is able to get back to feeling better soon!!! Rheumatology eased my mind by telling me that it may take several weeks to see the full effect of this methotrexate, but they do believe it is working too, and her pediatrician told me today that she probably will have occasional flares despite her treatments because of the severity of her JRA. Anyway, please pray for Stephie and for this inflammation she is having right now. Thanks so much and God Bless you all!!!

Love,

Mary

Monday, December 8, 2008 8:27 AM CST

Hi Everyone,

We are doing alright here, long time no update I know! Stephanie is doing amazingly well these days ever since she started the Methotrexate injections, she is not only walking but able to run and you would hardly know anything has ever been wrong with her because now it is hard for you to keep up the pace with her!!! It's Great!!! Now, she still cannot over do things or she will have flares of pain, but she has come a long long way from where she had been and we are praising God for allowing her Doctors to have the wisdom to diagnose and treat her for the JRA.


The school does not feel that Meagan has Aspergers, so that is even more great news for us!!! They feel she is just slightly delayed in her speech, but that she understands much more than she lets on, and in fact she is doing excellent in her academics which is more good news!!! Kristen and Stephanie are also doing extremely well in school academic wise and I couldn't be prouder. Kristen was awarded A Soaring Falcon Award at school the other day and she got a T-Shirt. A Soaring Falcon is the equivalent of a student of the month award, however only two students from 6th, 7th and 8th grades are chosen each month so it is much more difficult to attain. I'm so proud of my girl!
Stephanie has returned to school on intermittent homebound, but so far has not missed any since returning right before Thanksgiving break! Stephanie's teachers are happy to have her back too.

Caitlin has been having some "issues" due to her autism, it has been difficult lately to watch because there are times where I feel as if she is regressing. Although she is also doing well in school she is becoming more and more insistent upon her routines and taking everything very literally, including the things we say. If we raise our voices in the slightest she takes that to mean that we hate her and are yelling at her and it will throw her into a full blown emotional fit. I am finding some of these moments difficult and I believe we need some more support, especially now that she is getting older and we will have new issues to face with the autism. I worry about her self esteem and the way she chooses to cope. I will be contacting our local chapter of CARD ( chapter of autism and related disorders) because they are a wealth of knowledge! Caity is still as sweet as can be and needs understanding!!!

Caity and Stephanie got to do Rotary Children's Christmas shopping on Saturday!!! They each got $100 to spend and picked some really great surprises for the family. We will be eager to see what they chose for us and can hardly wait.

I have to run as I have an appointment. I was layed off from my Job on November 28th, it is kind of scary but I trust in God. Please keep on praying! We love all of you!!!

Love,

Mary and the Girls

PS> Couple new photos from Thanksgiving in photos section

Tuesday, November 4, 2008 8:01 AM CST

Hello Everyone,

I hope that all of you are doing well and we appreciate everyone's continual prayers and the fact that you still check in very very much!!! We are doing pretty good around here. Stephanie is still walking and seems to think that Methotrexate is some kind of miracle drug for JRA! lol She said this is the first time in a long time that most of her joints feel normal and she is finally *almost* pain free. Notice that word almost though, we would like to see her totally pain free but her ankles are bothering her majorly. Mainly the ankle where they found the bone cyst, but the opposite ankle was bothering her last night too and anytime she overdoes it with the walking she seems to be in a flare. Trick or Treating the other night was pretty rough on her, she came home in agony and screamed most of the night that her legs and ankles hurt. It made me feel pretty darn helpless cause there is nothing I can do to take away her pain, other than the medication she is already taking so it is sad.

Stephanie has arthritis in almost every one of her finger joints, her neck, her wrists, her knees and her ankles and feet. So it seems to be pretty widespread, poor girl. I made a boo boo the other day and felt just awful, she spiked a high fever so I gave her some Motrin and then the next day she got another one so again I gave her more Motrin; but she told me she then felt sicker so I come to find out that I was not supposed to give her the Motrin because of that Methotrexate she takes, and I frantically called the pharmacist. Luckily it was alright, but I was told not to give it to her again, and to instead stick with Tylenol for fever with that medication. I vow to be more careful next time, and truth be told all of these medications and their side effects/ possible interactions with other drugs etc; scares me.

Yet for the most part all things considered this is truly the most normal Stephanie has felt in a very long time and it is good to see her up and about more, and doing normal kid stuff, that makes me happy. There is talk even about her being able to go to school right after thanksgiving break, because we plan to have her on intermittent home bound!!! That way Steph can go to school at least on the days she feels well enough to go and be with her friends. I feel good about that decision too.

Meagan's IEP meeting is on the 6th this week. This is the big one where the testing they did for months will reveal to us whether she has Aspergers or not. I am a bit nervous about it but whatever the outcome will be fine; after all what better mom could handle than I could? It is almost like second nature at this point after Caity-did and Kristen and they are both doing great and I know Meagan will be fine too. I have four very intelligent, beautiful, sweet and helpful girls. I couldn't be any prouder of them and would not trade any one of them for the world!!! My girls are such blessings.

Thanks again for checking in! We love you!!!

Love,

Mary

Wednesday, October 22, 2008 9:58 AM CDT

Wednesday Evening 8:20 pm Update

We just returned from Rheumatology. Because we missed the July appointment we were unaware that they found a cyst in Stephanie's heel on the latest MRI that she had done in June. Anyway they are almost 100 percent certain that she has JRA Juvenile Rheumatoid Arthritis and wanted her to start a chemo drug called Methotrexate immediately and she had her first injection today. It is a much smaller dose than they would give to cancer patients but it can interefer with folic acid in the body so she has to take more pills called Leucovorin exactly 24 hours after the injections. For now she will take the 50 mg Methotrexate injection once weekly and she learned to give herself her own injections today and was able to do so in the office. I cringe thinking about it because she has to do it in her belly, but she did it with no problems and not even a tear! She will still continue to take her other medications she was on for the suspected Lupus, however her Celebrex has been affecting her platlets causing her to bruise badly. She had 24 bruises today that we could count that I had not noticed earlier. The Doctor said it was alright though, just how Celebrex affects her body. Anyway I have lots of research to do about JRA now. I am glad that they found that cyst however awful it seems, it points right to JRA we were told because that happens to kids who get it even in absence of other blood indicators. They also want her to see Oncology every 6 months because they said the Methotrexate will likely be for long term therapy and she will need to be monitored while on it, even though the dose is much smaller. Today she had labs done and will likely have to have them done often to monitor her while on all these medications. Well just wanted to share, glad we have some answers, but still concerning!






Hello Everyone,

Thanks for continuing to check in despite such infrequent updates. I have very good news! Stephanie is walking again without assistance from her boot, her walker or wheelchair!!! Yet not only walking, but she was able to run too!!! lol Her heel can now touch the ground again without pain!!! It is very odd to me because she hasn't been able to walk for the last 19 months and now suddenly last week when she tried again she could, and God is so so so so good!!!! The prayers have been heard and answered. She is back to wearing two shoes, her favorite pink Crocs and she is feeling good about herself right now!!!

We go to Rheumatology today so they will surely be surprised I know to see this change, as are we. As for the other issues we are still dealing with many other things such as the tummy pain and lymph nodes in her abdomen, and the neurological things but I imagine that she will get some other referrals soon. Yet right now we are just praising God for her ability to walk!!!!

Caitlin turns 10 on Saturday the 25th!!! She is very excited and is counting down the days until she officially reaches the age of double digits, and I'm here wondering where all the time has gone!!! lol We have a small party planned at her Grandma's house though complete with a Hannah Montana Cake. She is a little obsessed with all things Hannah Montana right now and Caity had designated Tuesdays as Hannah Montana T shirt day. Every Tuesday she insists on wearing her T-Shirt and her memory is unrelenting. Yesterday I could not find the HM shirt and she freaked out on me and had a very awful tantrum complete with lots of shrieking and tearful fits. I mustered up all of my patience and luckily was able to locate it, but to say she is literally obsessed with her routines is an understatement. Caity has decided she needs more HM T-shirts so I am going to give her more for her Birthday and Christmas. This way if I lose one (heaven forbid) I will have another to put on her and avoid situations like we had yesterday where she is so insistent on the routine that it causes turmoil for both of us.

Meagan lost her two bottom teeth and had her first visit from the tooth fairy! The first one was lost October 13th and the second one followed shortly thereafter on October 18th!!! She looks so darn cute right now, I will have to get some pictures up. She keeps staring at herself in the mirror and smiles and likes to put her tongue in the little gap. I asked her if she loved herself to which she replied yeah!!! lol She is still a handful but so adorable.

Kristen is trying harder in school. She is going to do better I know. She decided for Halloween to hang out with her friend Heather, so she is officially growing up!!!! She turns 14 next month but most of her friends are 15. She is still a good girl and helps me out so much at home with her sisters and always makes me feel proud. She is still really into her graphic art. I need to get some of her latest creations on here, she amazes me with her God given talent.

Well I better run! Praise God for Stephanie being able to walk!!! Thank you everyone for your never ending prayers that were answered!!! We love you all!!!

Love,
Mary and the Girls

Friday, October 10, 2008 5:53 AM CDT

Hi Everyone,

Once again sorry for the long delay in updates. Stephanie has started on Homebound schooling again, she was just to ill to continue going. Everytime she would go she would get sicker, and picked up every virus she was exposed to, seemed we were in the pediatrician's office more than she could go to school so it just wasn't working out the way we so hoped it would. Her next Rheumatology clinic is on October 22nd. She has been feeling pretty yucky lately so that cannot come soon enough. Seems to be having lots of tummy and joint pain again. :(

The other girls are doing alright. Kristen is getting some tutoring after school in her subjects, she was not doing well at all on mid term grades and that is so unlike her. As I stated before she just hasn't been happy or motivated. Now that she has started this tutoring within these last two weeks I am already seeing improvements and her attitude is improving so I am glad to see it. Meagan is struggling a little bit in school too from what I understand, apparently she enjoys coming to school and playing or socializing with all of her friends! lol She is not really cooperating with the academic side of school from what I was told. I kind of laugh though, because she is only in Kindergarten right now, and I know she is smart, she is just extremely independent and that is her personality. Unless it is her idea than she will be unwilling to conform. She is my little nonconformist and I don't necessarily believe this is a bad thing. I am not sure what I will do with her though, what a stinker!!! lol

Caitlin is doing wonderful!!!!!!!! Her grades this year at mideterm were all A's and B's and she is cooperative, sweet and a joy to have in class. Her report card made me feel so proud. She loves Hannah Montana so I went to Wal-Mart and bought her a new Hannah Montana Backpack and she squealed with delight and was jumping up and down because she was so happy to have it!!! lol I just wanted to reward her hard work and effort, she is such a sweet little girl and always tries her best. I marvel at how far she has come over the years, what a great kid she really is!!! I still will always remember she was the most difficult of all the girls as a toddler and the many nights I spent crying because I thought I would not make it through all of the hard times we had, wow you would never know looking at her now. You would think she had been the easiest of them all, she is so so sweet and just a joy always. :)

Well I better run have to get the girls ready for their bus this morning and check on Stephie! Thanks always for the prayers and for checking in!!!

All our love,

Mary and the Girls

Wednesday, September 17, 2008 8:01 PM CDT

A Dolphin snatched Stephanie today!!!


Yes you heard that right! Stephanie's 7th grade class went on a field trip to observe marine life today at the Marine science station in Crystal River and the instructors took them out by boat into the Gulf. Stephanie got stung by a baby jellyfish to start her day off right Ouch poor kid! So she had to have the sting on her arm tended to then she and her best friend Kaylie decided to go back into the water and went underwater to explore the sea grass and were holding hands, when all of a sudden Stephanie feels heself being ripped away. At first she felt terrified because she thought that a shark was taking her but it in fact was a wild bottle nose dolphin who layed on his back hugged her with his fins and stared swimming away with her very fast!!! The dolphin pulled her to the surface and looked her in the eyes and was chattering, and squeaking and making clicking noises to her like he was trying to commnicate with her, and then he starts slapping her tummy over and over again with his fins. It is the strangest thing ever even the instructors and the boat operator there were a little taken aback. They take kids out there daily but never has anything like this happened where a dolphin takes off with a child, well not until today with Stephanie. The instructors were very nervous because they almost couldn't catch them, as the dolphin was taking her far from the boat near an area known for Gators, but luckily one was able to grab hold of Stephanie's hand and had to scare the wild dolphin away because it really wanted to keep our Stephanie I think!!! lol

How is that for a wild adeventure for that kid? I bet a lot of people would pay big money for an experience like she had and it is so unusual! I keep wondering now if it sensed she is sick and was trying to heal her? They say Dolphin's have healing ability or power to know these things. I don't know about any of it, just know that it is pretty amazing!!!! What an incredible day to remember for her.

Tonight she is pretty nauseas from that jelly fish sting I think, and her throat is still a little sore but she is still taking that antibiotic and the steroids have helped the imflammation she had so she can breathe which is good. She just took all of her medicines and is trying to rest right now but is just not feeling good. But wow what a wild day she had right??? Please keep praying for her!!!

Love,
Mary and the Girls

Monday, September 15, 2008 10:50 AM CDT

Hello Everybody,

Stephanie and I were back at the pediatrician's office yet again this morning. She has been in to see him it seems consistently every week at least twice per week since school started last month. We were in a week ago Friday for severe neck pain and it was determined she must have slept on it wrong and then last Monday for a sore throat which she took a Z-pac for a duration of 5 days. Then bam she is sick again as of yesterday (Sunday) complaining she couldn't breath because it was hurting her badly to take deep breaths and then she was having coughing fits where she could not stop and the sore throat was back only this time with a vengence! Sooooo she is now on another antibiotic and she is still feeling miserable with this. I have turned the air conditioning in the house pretty low in hopes it will help her breathe easier, but she is saying it is really hurting. We are supposed to go back to the Dr in a couple of days for a recheck and hopefully the antibiotics will work on this nasty virus this time. Seems like every time she goes to school and is exposed to germs she keeps getting sicker. So thats the latest ordeal here.

Kristen is hating school and it is breaking my heart cause I am not sure what is wrong. I questioned her about things because I worry it is because of the changes the family is going through with Daddy leaving and all but she swears that is not it, just keeps telling me school is too hard and she hates it. So am looking to see if there are any alternatives for her or something to motivate her. Caity and Megs seem to be doing well so I am glad to say that!!!

Have to run, please keep Steph in your prayers!

Love,

Mary and the Girls

Thursday, September 4, 2008 4:37 AM CDT

Hi Everybody,

Stephanie has been having problems again with weakness in her hands, tingling, some numbness and pain, and having leg tremors. She got a new boot today to aid her walking again so she could rely less on her walker, however she is finding it more difficult to walk even with the new boot. Nonetheless she is managing however challenging it is for her, yet Dr Hiremath wants her to see the Neurologist because he is starting to feel that some of these issues could be neurology based and this is one specialty she has not yet explored as to a possible cause for these problems. She continues to take the Lupus drugs and takes 15 pills a day. She is still on the Celebrex but also takes Lyrica, prescription prevacid (tummy issues still awful) and prescription zantac and the planquenil. We are needing to get her back to rheumatology since I missed her last appointment in July so we are working on rescheduling that too. She has already missed about 4 days of school because she has been sick again or in just too much pain and her hot flushing has returned and she just gets drenched and tells me she feels like she is burning up from the inside. Please keep praying for her, she is such a strong little girl for as much as she goes through.

The other girls are doing okay. The school wants Meagan tested for autism, I think they think she may have Aspergers like Kristen, I don't know yet because she functions well, but there are moments when she does say odd things and it makes me wonder. What would be the odds that three of my four daughters would have some form of Autism, it is pretty astounding thinking about it. Yet they all seem to be doing alright otherwise anyway and are getting into the full swing of the school year.

I am doing okay, I am adjusting and taking everything in stride by living each day as it comes my way. Trying not to worry too much about anything. Work keeps me pretty busy but I am fortunate to be able to work from home and be here for the girls so thats nice. They changed my schedule again so now I am working 2:30 to 8:30 shift, which I find much easier.

Thanks for continuing to check in and for your prayers. We love all of you dearly.

Love,
Mary and the Girls

Friday, August 15, 2008 0:34 AM CDT

Hello Everyone,

I apologize that I have not updated in so long, I guess I was waiting for the right time as this is not an easy update. Brian and I have decided to call it quits after 16 years of marriage and separated about 3 weeks ago now. He went to Pennsylvania and I am remaining here in Florida as are the girls. Life seems to have been such a roller coaster of unpredictable emotions lately, yet strangely enough we are all okay and doing as best as we can taking each day as it comes and living our lives one day at a time.

Stephanie has had several more issues this summer including leg tremors, tingling in her arms and hands and weakness in her arms and hands as well. Her headaches have seemed to lessen so that is good yet she continues to be plagued by stomach pain which never really has let up. She is still not able to walk normally and her boot finally gave way and broke a few weeks ago so she is back to using her Walker full time for her mobility. I still wish we knew whats going on with her, and wish she could be able to walk and run like she used to be able to. She turned 12 years old July 28th and is going into 7th grade. We have decided that she will try going back to school despite all the issues, and shall see how that pans out. School starts Monday the 18th.

Caity is doing really well and is looking forward to school again, as is Meagan who will be heading off to kindergarten!!! I keep wondering is my baby really this old already??? Where did the time go??? Kristen is doing well too and is already going to be in 8th grade this year!!! Gosh high school is a year away!!! This makes mom feel very old!!! lol

Well just wanted to give a quick update and we sure could use continuing prayers, but by God's Grace we are all doing fantastic and he is meeting our every physical and emotional need, He is so good!!!

Thanks for checking in and we love all of you!!!

Love,
Mary and the Girls

Tuesday, July 15, 2008 9:34 AM CDT

Hi Everyone,

I wanted to get on here and ask for prayers this morning for my mom. She has been having a problem for the last 6 months with her red blood cells bottoming out and despite medicine for the last three months it was continuing to happen. so they sent her in for a tap last week and lumber puncture and she just found out yesterday that she has Myelodysplastic Syndromes (MDS). I don't know what any of this means yet other than it is a pre cursor to AML Leukemia, and it is good that this MDS was caught in what is still considered to be the early stages.

If anyone has any information on MDS that they could give me I would sure appreciate it. Also keep my mom in your prayers, her name is Gloria. She is not afraid or anything, I think us kids are more frightened by this news than she is because we do love her and worry!!!

Thanks so much, we appreciate the prayers and love all of you!

Love,
Mary and the Girls

Sunday, July 6, 2008 4:47 AM CDT

Good Morning Everyone!

First of all I would like to say thanks for continuing to check in and pray for us during the lack of updates, it means so much to us that we continue to have so many faithful and loyal friends. Also wishing Brian a Happy Birthday today he is 37 years old!!!!!

On to the update though, lots to say. We are still very busy due to this move, but got all of our stuff to the new house and are still cleaning and painting the old one. We love the new house, it is so nice and cozy and feels very homey, even the girls love it here. I will put a couple photos in the album.

Stephanie is having problems with her hands and arms. She keeps having pain, her hands fall asleep and get all tingly. This is happening to her constantly, seems neurological and we are concerned. She told me today she had so much fun when she was a kid. :( I asked her what she meant by that because she is not even 12 yet, so she is still a kid. She said to me that she remembers when she was little like Meagan and didn't have all the pain, she remembers how much fun she had and how happy she was then. She then went on to tell me she is no longer happy because her pain is unbearable to her most of the time. That just broke my heart to hear her say that, I know it is bad, but guess I don't know just how bad her pain is because it is not me who has to live with it and feel it. :( It hurts my heart very badly though to know.

Meagan has been having some problems too, she has been screaming that her legs hurt and running a fever the past few days. The leg pain has been happening a few weeks now, we think maybe growing pains. But, I always worry because of what is happening with Stephanie, thats how everything started with her and the fact we still don't know what is happening. So please pray for Megs too, this makes me feel so uneasy that leg pain keeps bringing her to tears. I am worried, I can't help it.

Caitlin and Kristen are doing really good. Those two are such big helpers to me. They have helped so much with this move and without complaints, they are always eager to offer their help. :) Caity has been asking me lots of questions lately, I am glad she is so inquistive, it is really something for a kid with Autism!

I better run, I have lots to do today. I again thank you for continuing to pray for us and for checking in, we love all of you!!!!!!

Love,
Mary and the girls

Friday, June 13, 2008 9:07 PM CDT

Hi Everyone,

Again don't mean to make anyone worry, it is just a very busy month but thought I could try and sneak in an update tonight. Stephanie had another MRI last Friday of her foot, knee and ankles. We have not heard anything back so I will take that as good. Yet the poor kid has been having severe cramping and weakness now in her hands and arms as well as in her legs, and her legs have just been bothering her terribly as of late. I am going to ask primary care if she can be seen by neurology, since some of this stuff just isn't right. She has also been getting tingling sensations in her face, and I'm not too sure what that is all about just yet.

Other than that I am getting ready to move, and Caity starts summer school in another week so busy busy busy here!!! My baby Meagan turns 5 years old on June 23d and it makes me wonder where all the time has gone, feels like she was just a baby only yesterday!!!

Thanks for checking in!!! We love all of you and send big (((hugs))) to everyone of you!!! Please keep on praying!!!

Love,
Mary and the Girls

Sunday, June 1, 2008 0:07 AM CDT

Dear Friends,

I am so sorry to have made all of you worry. I heard back from the doctor on Friday about Stephanie's abdominal scan, they called it "stable". Meaning the nodes are still there and about the same, they have not decreased, nor have they grown or changed since February. It is good news though to us, because it could always be worse. At this time oncology still does not want to biopsy them and feels that rheumatology can handle Stephanie's care, but should things worsen she can then again be referred back to oncology and they can check her again.

Things have been so crazy busy here, again I'm sorry for not getting news on here much sooner than now. This will be the girls last week of school, then they are out for the summer. On July 1st we are moving into a new house, so I imagine things will continue at this hectic pace for a while before they settle down. Stephie is still feeling pain, but it is nothing out of the ordinary and I feel as if she is getting used to constant pain, poor kid! Caity, Kris and Megs are all doing well and anticipating summer vacation!

I will update more as soon as I am able. Thanks so much for your continued prayers and support. We love all of you!!!
(((hugs)))

Love,
Mary and the Girls

Friday, May 23, 2008 11:27 AM CDT

Hi Friends,

Stephanie is still feeling sick, the poor kid had achy joints last night and felt feverish and this morning she has a really bad headache. We did hear back from Shands they scheduled two Mri's, one for the 28th of May and the other is for June 6th. I am trying to find out if we can just combine them, but waiting to hear back. I hate her being exposed to soooooo many scans!!! That actually kind of scares me.

Other than that we continue to hang in here, she has had no other episodes of that stabbing eye pain so that is wonderful. The girls are excited about the end of the school year drawing nearer, mom though not so much!!! lol Awwwwww I love them dearly, I just think it is going to be a very long summer. :)

Thanks for checking in and continuing to pray for all of the girls, yet especially for Stephanie!!! We have so much faith that God does hear all of the prayers!!! (((hugs)))

Love,
Mary and the Girls

Tuesday, May 20, 2008 10:10 PM CDT

Hi Everyone,

Stephanie had another visit today with pediatric oncology at Shands. We now have another doctor on the case, Dr Amy Smith who is the director of Pediatric Neuro-Oncology at Shands. Dr Smith was compassionate and treated us very kindly, she seems to be genuinely concerned about Stephanie's health status and indicated to us that she reviewed Stephanie's case and the recent blood work. She told us that the blood work does not seem to indicate anything rheumatological, although she knows that rheumatology is treating Stephanie with several drugs; and she is concerned about the continued gastric and joint issues. She wants Stephanie to have a another CT of the abdomen and pelvis next week and is getting that set up. Dr Smith also wants to see if there are any changes in the mesenteric nodes from the two previous scans done in September and February. So we are awaiting them to call us with a time and date. Tonight, Stephanie had a new symptom crop up, we were on the way home from the grocery store when she starts screaming and then crying really hard saying she was having stabbing pains in her eye. This scared me to no end and felt like it lasted an eternity as I tried to speed home and comfort her, but it actually only lasted about 5 minutes. When it was over she said her vision felt a little bit fuzzy, but she seems to be fine now Thank God! I'm so very worried about her still. Please keep on praying!

Love,
Mary

Monday, May 19, 2008 8:06 AM CDT

Good Morning Everyone!

I have some new pictures following the update. We are all hanging in here, and actually had a good weekend! Stephanie's arm seems to be feeling much better and I never did hear back anything on those x-rays she had, so I will take that as a good sign!!! She does have that 3d appointment with Oncology tomorrow, lets just keep praying they tell us to hit the high road and that they no longer need to see her. That would be such a relief. She wasn't feeling well last night, but I think she spent way too much time in the sun this past weekend.

Saturday was our Lupus Walk, and it went extremely well. Thanks to those who donated and were there with us in spirit. The Stadium was awesome, it was really a dream come true having it to ourselves and getting to participate in such a phenomenal event. Stephanie walked around 2 laps, then she became tired and had to rest because her leg was bothering her. Yet, she amazed me because that is no easy feat! I'm so proud of her!

Saturday night we went to my sister Anne's house for a pool party and BBQ. The kids had fun swimming while the adults had fun playing poker and apples to apples and we may have had a few rum and cokes! lol We all had a great time just kicking back and relaxing.

Meagan is being a real pistol lately, she is so funny though. She woke me up this morning at 5:00 am, she had on her Plastic Disney Princess high heels, Her Thermal underwear top, and Khaki shorts and was holding a basketball, and announced to me she was going outside to play basketball now. LOL I had to tell her, no she was not!
She keeps doing and saying very funny, sometimes odd things.

Enjoy the pictures posted below from the walk! Please keep on praying too!!! We love you all very much!!!

Love,

Mary and the Girls

Thursday, May 15, 2008 9:04 AM CDT

Good Morning Everyone,

I meant to update last evening, however yesterday was an extremely long day at Shands and an emotional one for us too, so it took me until this morning digest everything. We went to Rheumatology, where they had sent the nurse practitioner into see Stephanie instead of the Doctor. My heart just had a sinking feeling right there as she began to dismiss our concerns as if there was nothing rheumatologically wrong with Stephie. When told about Stephanie's arm she asked Stephanie, oh it hurts or you just don't want to move it? Stephanie fired back at her, that no it hurts whenever I lift it or try to use it. It is a loooong story, but in short at one point I finally could not contain my frustration and found myself yelling at her (the nurse practitioner) and when I caught myself I apologized to her for yelling, but explained to her that she had no idea of everything we have been through and the level of frustration and then I began to cry, no bawling like a baby is more like it. It was suddenly very overwhelming to be sitting here trying to explain it yet again to another person unfamiliar, and all I wanted was the Doctor, so in short we got the Doctor!

The Doctor was thorough and checked on bleeding sores that Stephanie has on her scalp, checked her bad left arm, checked her strength, asked many more questions and listened patiently and reviewed what we have done so far. She wants Stephanie to start on another drug called Lyrica and she also upped the Planquenil that Stephanie is now taking to 2 pills a day. In addition she is to continue to take the Celebrex, Prevacid, Zantac and Sucralfate. There will now be 15 pills a day for Stephanie to take.

She then asked if we recently saw Oncology for a follow up, I told her no that I thought that was ruled out to which she replied that no oncology is not yet ruled out. Which surprised me because I thought that is why she had the Pet Scan. Dr Elder said I needed to make another appointment with them, because of all of these issues, that they still have to follow Stephanie. She then told me that she wanted a second opinion on Stephanie's orthopedic issues in her right leg since she still cannot walk or put weight down at all without the boot. So they are making a referral for Stephanie to be seen by the orthopedists at Arnold Palmer Children's Hospital in Orlando. Dr Elder also is scheduling a MRI of the Right Knee, foot and ankle to check for stress fractures and ordered a whole new round of blood work, and new x-rays taken by Shands for the left arm with a possibility of an MRI for the left arm if a problem is found, which I think they did see something, I will get to that in a minute. The Doctor also wants Stephanie to see Dermatology, Opthamology, and to follow up with Gastroenterology and to see Stephanie back in Rheumatology in 8 weeks, in addition we are trying a new shampoo for Stephanie's scalp to help with the bleeding she is experiencing in patches there.

When Stephanie got the x-ray of her left arm, the technician excused himself for a minute and left the room, and then came back with two doctors who shut the door and were pointing with pencils at something on the x-ray over the forearm bicep area, the same place that was circled in Sharpie on her x-rays from the previous day. I wish we knew what they are seeing but unfortunately we still do not, but they spent quite some time discussing it. They then took a few more pictures from different angles and let us leave. I'm still wondering what is going on. All I know is it has got to be something, Stephanie is even crying in her sleep because her arm hurts so much to move.

I am overwhelmed right now, both physically and emotionally. Caitlin is sick with a virus and has had a fever for the last two days to add to the mix. I almost feel as if I am on the verge of exhaustion mentally, but I have got to stay strong for these girls. We are going back to see oncology May 20th, that is the next appointment. Still praying they can rule that out, that is a disappointment that they still have not. Anyway, we know God is in charge so everything will be okay. Please keep on praying for Stephanie and all the girls!

Love,
Mary

Wednesday, May 14, 2008 5:57 AM EST

Hi Everyone,

I thought I would jump on here really quick and just let you all know that I was wrong about Stephanie's Rheumatology appointment being set for Thursday, it is actually today and I am so glad I double checked. I am just feeling so overwhelmed with stress lately that it is hard to keep track of things. Her left arm is still very painful and she cries in pain every time she has to lift it. I am still wondering what it is that they circled on the x-rays with a Sharpie, because clearly there is something wrong. The radiology report I know will take 1 or 2 days so we will definitely have to see what they think once that report is in, especially since her pediatrician could not tell. However I am going to ask Doctor Elder today if she can get the copies and also look at them. It is very puzzling. Stephanie started running a fever last night and went to bed pretty early and told her doctor yesterday that she is really feeling very down because she is hurting everywhere. When the Dr asked her where, she sadly told him it was her legs, her neck, her shoulder and arm, her stomach and her head. That broke my heart, I don't understand any of this and am so very tired of seeing her having to endure so much with no relief. The Dr thought about possibly prescribing some stronger pain medications, but being she is already taking 10 pills a day and has the severe stomach issues he is not sure how much good it would do to heap anything more into the mix. Yet he did say that perhaps rheumatology can prescribe something for the severe headaches she is constantly getting, and we need to address that today too. Please keep praying for my girl and for all children who need prayers here on caringbridge, there are so many. Thanks to all of you too who have donated to the Lupus Walk this Saturday in honor of Stephanie, we are so greatful!!! If anyone else wants to donate or register for our team either as a virtual walker or as part of our physical team, the link is right below! Every little bit helps!!! Love to all!!! I will update again later when we return from Rheumatology.

Love,
Mary

Tuesday, May 13, 2008 6:07 AM CDT

Update 1:20 pm EST

We just returned from the doctor about an hour ago. He was stumped once again because he said that the forearm and shoulder would be rare places for arthritis but she screamed when he tried to move her arm any which way or change in different positions and he also was concerned because it felt very hot to him so he sent us over to the diagnostic center next door for x-rays. So she had them done and apparently they circled something on them and when Dr Hiremath looked at them more closely decided there was really nothing that he could tell but possibly inflammation? Anyway he told me he was going to phone Dr Elder, Steph's Rheummy and let her know he believes this is rheumatological. So we left and are home now, but Stephanie is in terrible pain and so horribly depressed and needs prayers! We go back to Shands on Thursday for clinic. Please keep praying!




Hello Everyone,

I just wanted to jump on here today real quick to ask for quick prayers for Stephanie. Her arm that has been bothering her for a few days is really hurting her and it is hard for her to lift it because she is having severe pain in her shoulder. I just have no idea whats wrong, seems as soon as one thing is seemingly better we have something else to contend with. We are going to the doctor this morning, and will find out what he thinks.

The Lupus walk that I told all of you about is on Saturday the 17th, and the link to register either for our team as an in person walker, or as a virtual walker is at the bottom of this update under our links section. There you will also see the donation page for Team Stephanie Lauren Templeton. Any little bit helps us, we are sorely short of our goal unfortunately and I don't think we were aggressive enough in our efforts, but like I said any amount is helpful! We need a cure and more research!!! The walk is in Saint Petersburg FL at Tropicana Field and will be held rain or shine since it is an indoor stadium. Love to all of you, and I will update again when we return from Doctor Hiremath today.

Love,

Mary

Sunday, May 11, 2008 10:01 PM CDT

Good Evening Everyone,

I am so thankful that all of you are continuing to pray. Stephanie seems to have recovered again to which I attribute to God hearing the many prayers that are constantly being lifted up for her. However, tonight she is complaining of some shoulder pain and weakness, which hopefully is nothing more than a pulled muscle. I am always reluctant to report when she is feeling well because it always feels as if I "jinx" it by saying anything, which we all know is NOT true, because when you have faith you don't fall for what the enemy would want you to believe to diminish that faith you have in God. So pray for my continued faith in God, that it may be strong and that I don't think so negatively because I do know those kind of thoughts are not from my Creator and the God who loves all of us.

I had a wonderful Mothers day, the girls were all so good to me!!! It was a day where I received beautiful homemade cards and poetry in them from the girls, and they bought two beautiful necklaces, coffee mugs and Belgium Chocolate and Crunch n Munch and they spent their own money and thought of me all on their own! lol I know it sounds silly, but they know Mommy does not normally buy Crunch n Munch because I can't stop eating it and could eat a whole box of it as it tastes so good! So I let them eat the box of Crunch n Munch they gave me and I shared my chocolate with them too. There were lots of tears and hugs today, it was a beautiful day. I hope that all of you had a Wonderful Mothers Day as well!

I will get some more pics of the girls on here soon, our Chiquita (chihuahua) chewed through my camera cable so looking for a replacement. I have tried Walmart yet they do not carry the cord and said to try Circuit City, and that is a long drive from here and haven't gotten around to that yet, but hopefully soon!

Thanks for checking in and for your prayers and love for our entire family. Stephanie's Lupus Walk is Saturday and there is still time to donate and register for our team or register as a virtual walker, will you help us???

Love,
Mary and the Girls

Friday, May 2, 2008

Good Morning Everyone,

It is early or maybe rather later here depending upon how you look at it. Anyway, we did end up taking Stephanie to see the doctor yesterday morning and thankfully her vomiting has subsided to our relief, but she was running a temperature. The doctor is still concerned about her needing to go back to her gastroenterologist, because he said that the medications she is taking are making her gastritis worse and that he feels she just has a stomach virus at the moment but we need to get her back in and seen again by the gastro docs soon. I told him that this all reminds me of the same symptoms that she had with the mesenteric adenitis, but he doesn't feel that the lymph nodes are the problem so does not want to expose her to another CT just yet; but told me to watch her and if this gets any worse to call him. He prescribed her Fenergan, gees yet another medication to take, to add to the many many pills!!! Anyway she is still not very hungry and complaining of severe tummy pain and fullness. Yet there was no vomiting or diahrrea Thursday so thank you thank you for the prayers because I know that God heard them and HE is good!!!

So I guess my next step is to call Gastro and try to get her in there sooner, because we were not scheduled to see them again until June. I also need to try to make an appointment with dermatology for which the wait can be up to 6 months, but once she is established it should be easier to be seen when these rashes break out on her skin. I also have to find her a good therapy place to get her walking again without the boot. She cannot walk at all unless she is wearing it, and we need to get her foot strengthened again.

Thanks again for the prayers and please keep on praying, it seems so overwhelming sometimes with all of the hurdles she keeps on facing. God sure made Stephanie strong though! We love you!


Love,
Mary and the Girls

Wednesday, April 30, 2008 11:36 PM CDT

Hi Everyone,

It is late here but it has been a long day. Stephanie is very sick with fever, severe abdominal cramping, headache, diarrhea, nausea and vomiting, gosh the poor kid still has a sore throat on top of all this too which has lasted for over 2 weeks now. As of today she did not eat anything at all because she complains that her stomach feels full and is throwing up every thing she drinks. I am very concerned about her, please keep praying! We are scheduled to see the doctor first thing in the morning and I am going to ask him for another abdominal scan to see if those lymph nodes are still persisting. I hate to have to see her go through another scan and expose her, but they said they had to monitor these mesenteric nodes anyway, and since the last scan was in February and there is a recurrence of the symptoms despite 3 prescription antacids, I think it is warranted and believe the doctor will also want the scan. I am wondering if she will need some IV fluids too because she is dry, and very thirsty and can't hold liquids down, even sips come right back up. Gosh, I really appreciate your prayers for her at this time as much as ever. Something in my Momma's gut tells me something is very very wrong, I don't know what it is just yet, but this is way beyond the realm of being normal and my heart is just heavy with concern right now. I will update tomorrow after we see her doctor and let everyone know if she is any better, praying this is only a virus this time!!!

Love,
Mary

Wednesday, April 30, 2008 8:12 AM CDT

1:25 pm EST Update ----

Please pray for Stephanie, she now has lots of nausea and vomiting in addition to her other issues and looks awful. She is not wanting to talk because she feels so darn sick, and is very pale. We have an appointment to see the doctor first thing in the morning. I'm wondering if they need to get some more blood and another CT to check on her abdominal lymph nodes again, feels like the same nightmare that we just can't escape! Thanks for praying, I'm really worried.



Hi Everybody,


Kristen is just fine, no more incidences of what happened last week Thank God!!! Although we still don't know what happened or why, we are just so thankful that there was no repeat incidences!!!


Now on to poor Stephanie, she is just plain sick! Her tummy pain has returned with a vengeance and this morning she was awoken very early with severe abdominal cramping and lots of diarrhea. She was crying because she said she hurts so badly. Poor kid is also battling daily headaches and her sore throat is not any better. She told us it feels like something is stuck in her throat, but there is nothing there that we can see. Her cold has now abated thankfully, but she is still feeling extremely sick. On a good note her joint pain seems under much better control now with the Celebrex and Planquenil, and her rashes have cleared up too. I am just not sure though that this Prevacid, Zantac and Sucralfate are helping her tummy issues, it just seems so severe. Her Doctor said that we should continue to keep her out of school and on the home bound program until we get a better handle on her symptoms and is filling out a renewal form for the school district. Prayers are still very much appreciated. I feel very helpless as to how to help her right now.

Caitlin and Megs are doing well! Caity will be going to summer school as decided by ESE, so I'm happy about that because transitioning is always so hard in Autism, especially after having a whole summer off. She needs to keep up her usual routines and it is much easier! Meagan will be starting Kindergarten in the fall, I'm still in disbelief!!! I can't figure out where all the time is going. Anyway, her pre k teachers have her visiting the kindergarten classroom daily at this stage along with her other peers who will soon turn 5. Meagan has a boyfriend on the school bus already named Jeremy who is 6. It is so cute he is always wanting to sit next to her when she gets on in the morning and Meagan told us the other day that Jeremy is her boyfriend!!! lol Yet Meagan doesn't always treat him very nicely and has no qualms about telling him off when he says something she does not approve of. For example the other day she decided to refuse getting buckled into the child safety harness on the bus which is required for all children under 5, and I gently tried explaining that because she was only 4 she still had to be buckled in and Jeremy pipes in yeah sweetie, you are only 4 so you have to buckle up, but I don't because I'm six years old. Meagan didn't like this at all and besides giving him perhaps the meanest and dirtiest look I have ever seen she told him to shut up! What a Diva she is, I'm not sure what I'm gonna do with her, I didn't teach her to be this way, it is just her feisty personality. Needless to say we are working on manners and treating others respectfully. Her teachers also say that Megs has a hard time sharing and wants everything for herself so we are working on this too, otherwise she will have no friends!!!

I have to get going, please continue to pray for Stephie!!!

Love,
Mary and the Girls

Friday, April 25, 2008 8:11 AM CDT

Sheesh, when it rains it pours. I mean it really really pours!!! I get a call from Kristen's school yesterday, it was the clinic. They said Kristen was crying her eyes out and complaining of shooting pains in her arm pit and left shoulder blade! They asked me if I would come pick her up because she really seemed to be hurting badly so of course I agreed and raced to the school. When I get there Kristen is in very obvious pain and is in tears. I was shocked because Kristen never cries, it is rare to ever see her in tears like this so I knew she must be hurting bad. I quizzed her as to if she could have injured it and so did the school but there was no way she could have. she told us she was sitting in class and started getting Stabbing pains beneath her shoulder blade and in her arm pit on the left side and she wanted to cry out. This is when the teacher noticed Kristen's pained expression and sent her to the clinic.

Anyway, the pain was so great it was hard for her to talk or to even walk and then her entire left side was gripped in pain from her shoulder to her leg and she was crying harder just to try to step up into the van. Talk about worried, I've never seen anything like this! So I rushed home real quick to call into work and rushed her to the ER. She was having some trouble urinating too so I thought maybe it was a UTI but the nurse there thought maybe she had a Kidney Stone or Kidney infection the way she was acting. So she tries to give a urine sample and it looks very dark, but surprisingly enough it only showed a low amount of bacteria and trace blood nothing to indicate any problems there, so they took her blood and the only thing that showed was glucose of 135 which could be explained by a half a can of Mr Pibb she drank on the way, and they scanned her Kidney and did not see any stones, so we are stumped! They gave her some Fenergan (spell) and that zonked her out and completely took away her pain and she has seemed fine since!

Kristy said her shoulder blade is still sore but she is not hurting nearly so much! Gosh, wondering what that was all about and what was happening to her though. It was very weird and so sudden and we have no answers!!! i pray that is the end of it!!! we have so much to deal with already, I cannot imagine God allowing us to have to deal with anymore crises.

Stephanie has a terrible cold now so that likely explains why she has such a terrible a sore throat, but her rash appears to be healing so that is good. She is drinking lots of hot tea and orange juice and getting lots of rest so hopefully she will be on the mend herself soon!

Thanks for checking in and keeping all the girls in your prayers, we love you!!!

love,
Mary

Thursday, April 24, 2008 8:19 AM CDT

Hi Everyone,

Stephanie continues to spike a fever every night and this had been going on for a week and she was still also complaining that her throat was very sore and it was hard for her to swallow, plus she has had neck pain where her neck feels very sore and tired, so she cries each night for us to wedge a tiny pillow under it just so she can sleep. Then the other day she developed a new rash over both elbows on the underside of her arms. The rash looks like red inflamed pustules or sort of like very infected pimples and developed suddenly. She got it on one arm and then the next day had it on both. So I brought her back to the pediatrician yesterday, since he didn't swab her for Strep the other day I thought for sure she must have had it because it is going around. However, yesterday her swab was negative for Strep so we are a little puzzled about whats going on! The doctor did say that he believes the rash is a bacterial infection and phoned in a $50 cream to the pharmacy for her to use on it, but we have no clue why her neck and throat hurt to this degree and why she has these fevers. Thus we are just keeping a watch and he told us to use warm compresses for her neck pain, continue the Sucralfate, Zantac and the Prevacid for Gastritis and bring her back in a few more days if the fevers continue to spike at night. She did have another last night but it was only 100.6 degrees, then she sweats and it is gone. Very strange indeed! Anyway, please continue to pray, I think she is having a bad flare!

Caitlin is enjoying her swimming lessons but still a little apprehensive. They were trying to teach the kids how to float on their backs and Caity still refused to do this as of yesterday, she told me she is just too nervous and of course thankfully no one is pushing her! I did tell her though that Mommy knows how to float on her back in the pool and how much fun it is, yet she was not too convinced! It is funny because she mostly talks to me about what she had for lunch that day, instead of the lessons themselves! lol

Please keep on praying for Stephie to feel better!


Love,
Mary

Monday, April 21, 2008 10:20 AM CDT

Hello Everyone,

I have heard back from Rheumatology and they want Stephanie back on the Celebrex because despite the chronic Gastritis it is still the safest drug available for the stomach, thus they want her taking Prevacid 30mg 2 times per day, and the Celebrex 200 mg two times a day, and the Sucralfate 1GM (horse pills, they are huge)4 times a day, the planquenil 200 mg once a day and now they are adding Zantac to this arsenal to total Stephanie taking 10 pills per day now for her various ailments. Gosh that does not even include Tylenol when she needs it because she has been running fevers the last several nights now!!! Please ask God to help me in keeping track of all of this! All of these medications are necessary, some for her stomach,, some for her joints and inflammation, and the other for her skin rashes. It is amazing to me that she can still even feel sick when all of this medication should be helping her.

Anyway, kind of bummed thinking about all of this, she just seems way to young to need so many different medications like this and the thought that this will be daily with possibly more medications to come over the years for the rest of her life just floors me. I hate autoimmune diseases and I have an enormous respect and empathy for those who do battle each and every day with chronic illness. I already know that Stephanie is much stronger than I would be! I would be feeling so sorry for myself I'm sure!!! Yet Stephanie is taking all of this in stride and gets up each day despite her discomfort and looks at the bright side of everything! Right now her attitude is what keeps me from going into the deep pits of depression, it is not easy!!!

Caity is having swimming lessons this week with her class at school. I am excited to think she may learn how to swim! She is a little anxious, but I think she will do just fine ! I will update when I know how everything went with regards to these lessons! We will be scheduling her next neurology and opthamology visit soon, she is still having problems with her strabismus and tilts her head to compensate. She may be needing to get some glasses to correct her alignment, it is her brain activity that causes it because of the focal seizures she has. Some days her eye looks better than others. This morning she was a little spacey and kept going on and on about her wanting me to watch Baby Loony Toons with her on Boomerang, tonight at 7:00 pm she kept on saying! She is still obesessed with Spongebob and watches it for hours, so it is nice to know she will watch something else occasionally too.

Gotta log into work! Thanks for checking in and continuing to pray!!! We love you!!!

Love,
Mary

Friday, April 18, 2008 4:52 PM CDT

Hi Everyone,

We made a trip to the pediatrician today for Stephanie's sore throat thinking that surely she has an infection but instead it turned into another matter all together. He said that she does not have strep, but he became very concerned about her stomach after listening and examining her for some time. He said that Stephanie has Chronic Gastritis and it is now affecting her whole abdomen as opposed to just the one area as it was before, and he thinks that her Celebrex might be contributing some to this worsening. He has prescribed an anti ulcer medication to take with her other medications called Sucralfate in the hopes of helping alleviate some of these stomach issues with this Gastritis. He also told us that some of the medications used in treating arthritis tear up the stomach and that because Stephanie already had gastritis before beginning her medications, that he feels that it is just worsening and that is why she is tired and has this sore throat (from acid reflux] and why she is feeling so awful in general so we are still waiting to hear back from Rheumatology to find out what they want to replace the Celebrex with, otherwise her joints are going to hurt her. So anyway that is the latest. She is still not feeling too well, but things could always be worse I guess. I will update again soon, thanks for checking in and please keep on praying!

Love,
Mary

Wednesday, April 16, 2008 11:43 PM CDT

Hi Everyone,

So today was a better day for Stephanie I thought because she did not seem at all as sleepy as she had been in the last 3 days. But apparently I was fooled because tonight she began to run a moderate fever and complained how she just didn't feel well at all and she was drenched in sweat. All of this seems never ending, these same issues just keep cycling in and out again. I can never even begin to predict just what is going to occur next, I only know it will be one of many things and all of them really stink for her!!!

Needless to say she fell asleep early again tonight because of the fever and not feeling well. Plus I'm not even sure anymore what to give her for a simple fever, because there is so much now she takes, and some things she can't take with those drugs, and then some things she is not supposed to have because of her stomach inflammation. I think she can have tylenol, but I am not sure because I don't know if my memory is serving me correctly under all of this stress with these health issues! I have never had to deal with such chronic illness before, even Caity with her problems has never been this sick.

I guess I need some prayers for me tonight, and of course Stephanie does too! Other than these latest issues I think everyone is alright otherwise. This too shall pass right? Thanks for checking in and I will keep you updated as to how tomorrow is. Hopefully it will be a better day for all of us, I need some rest!

Love,
Mary

Wednesday, April 16, 2008 2:24 AM CDT

Hi Everyone,

I'm sorry that I haven't updated in awhile, time gets the best of me sometimes I guess. Stephanie is NOT feeling well at all and I have been concerned about her. She was feeling particularly bad on Sunday just hurting all over, same things affected; her head, her abdomen and joints. She has also been very very tired and has slept a lot in the past three days now. She is awake about 5 hours and even that is broken up, and will sleep the rest of the time, so it is concerning. She will sleep all night, wake for a couple of hours in the morning, get tired again fall back asleep and will wake up again in the late afternoon, and then once she eats and takes her medicine she falls back asleep again and sleeps until morning and the cycle repeats. This has happened for 3 days straight now, so we are keeping an eyeon her. Something is just not right. Last week she had a total of 5 mouth sores which were bothering her, but she only has one right now, so at least some things are getting better. Poor kid already has so much to deal with!

I got the girls report cards and they all did pretty good. They made mostly A's and B's and each had two C's as well!!! lol They are all like their Momma here in the mathematical sense, so don't mind a C in that! Just passing it is good enough for me!!! Caity is going to have swimming lessons next week through her school which she is nervous about. her class went on a field trip to Medieval Times in Orlando and she enjoyed that very much, but it was funny because prior to going on this trip she had questioned whether or not Jesus would want her to go because she was worried it could be "evil". LOL Brian and I get a kick out of her autism sometimes and the things she takes so literally! Just based on the pronunciation of Medieval; she thought it was something evil!!! Anyway Caity said her lunch was great on the field trip but it was a little yucky because they made her drink Pepsi with lunch and that Pepsi is the most awful thing she has ever tasted. She still has very sensitive taste and smell and cannot tolerate most soda's! Caity-Did is so precious despite her quirkiness, she continues to make me smile!

Please keep Stephanie and the other three girls in your prayers! Thanks again for continuing to check in on us, we love you!!!

Love,

Mary

Sunday, April 6, 2008 7:56 PM CDT

Hi Everyone!

Finally have a moment to update you on our Disney adventure this weekend. We had a great time, although some moments were pretty stressful. Of course this is the Templeton family we are talking about here, so of course there was lots of drama and it was not uneventful so grab a seat and read all about it!!!

We left the house about 6:30 am on Saturday and grabbed some quick breakfast through the drive through for the way. We took the wrong exit to start things off and ended up paying 2.00 more in Tolls than we should have because of our mistake, although luckily we got to Disney at 9:00am just as it was opening for the day. Excited to be at Disney we didn't even know where we should begin!!! But we opted for the speedway and it was a great way to start out the trip because everyone loved going around the tracks in their go carts especially Meagan because daddy let her take the wheel!

Afterwards the real fun errr nightmare begins, truly you would have to of seen it to believe it, I say these things only seem to happen to us!!! Anyway, after the go carts Brian, Kristen and Stephie wanted to go on Space Mountain, so we agreed that I would be taking Caity and Meagan on the Tea Cups while Brian and the girls did their Space Mountain ride and we promised to meet back up. So of course Caitlin, Meagan and I went on the tea cups and had a blast and then Caity and Megs were complaining that they were thirsty so I took them into Starlight Cafe for something cold to drink.

So we get our drinks and then Meagan tells me she has to use the bathroom so off we go to find the restrooms. The bathrooms were down a long corridor and Meagan breaks her hand free of mine and begins to run. So finally I see the restroom sign and Meagan was still running ahead of us with me calling after her and to make a long agonizing story short she ran so fast she couldn't stop and slipped on the floor and fell head first into the bathroom door banging her forehead so hard on the door when she fell forward that the boom you heard was deafening! My heart almost stopped right there, I couldn't believe it! A very nice lady who was nearby witnessed the whole incident too and offered to get some ice for Meagan's head and someone to help us because Meagan seemed kind of out of it for a minute and then began screaming at the top of her lungs.

A nice goose egg lump immediately formed, and Meagan kept saying her head really hurt while we waited and waited for help. Finally the staff got their manager who in turn thought we needed to go to the first aid center for Meagan's head injury so they escorted us and put Meagan in a wheelchair down to the first aid center.

They tried giving her more ice there, but Meagan would not have any of it, they also tried giving her tylenol and she spit that out all over her clothing, so as nothing more could be done they advised me to just keep an eye on her and if I needed further assistance to ask any cast member for the medics. Thank God everything turned out ok but she seemed really dazed for a few hours afterward, just kind of out of it.

Brian and I are wondering if maybe she has something wrong with her vision, I mean she runs into walls all the time and things that a normal person should see. Her teachers always tell me that she bumps into walls at school, and I notice her bumping into things too often, now this door incident, this was scary! I guess I need to make her an eye appointment and soon!

Okay, when that drama was over, Brian wanted us to remain together so we decided to go to Tom Sawyers Island and we got on the raft to take us there and explored the mine and the crooked bridge and just walked around. Only Caity, Kristy and Steph went ahead of us in the mine and when we met up at the end Caity was missing! Yikes! So Steph and I had to go back in the opposite end looking for her, turns out she was scared and hiding in the mine waiting for me!!! I was just happy to find her!!!

Then we get back on the raft to get back to the rest of the park, and it begins to rain, a little at first but then a torrential downpour within the next hour so drenched and miserable we decide at this point to go check into our hotel suite, it was about 4:30 pm.

I never knew how bad access is for handicapped guests until this visit with having Stephanie in the wheelchair, but now that I know I am kind of appalled! There is no covered walk ways in the handicapped accessible lot for disabled guests and no transportation to the lot either. The trams do not go to the handicapped lot and they do not accommodate wheelchairs either. So we were left to make a quarter mile trek to our parking pushing Stephanie in her chair as fast as we could and carrying a screaming megs as we got soaked from rain and our feet also got soaked from all of the standing puddles. It was so sad really, especially for the kids. Brian and I really think that a covered walkway for disabled guests is needed and we have already suggested it to the park.

Anyway we check into our hotel suite and we were all so happy to change into some dry clothes!!!! We were literally sopped, our clothes were very wet and heavy from the rain. We then order deep dish Chicago style pizza's from Giordano's to have deliverd to our suite. We were going to go out but nobody was in the mood because the weather was so rotten, so we eat and decide to go back to the park with a fresh attitude since the rain seemed to have cleared.

Once we got back we took the Ferry to the mainland and watched a parade and went on it's a small world which is now Caity's absolute favorite ride! We also visited Haunted Mansion and I tell you that ride terrified Caity, she was especially frightened because the voice at the end tells you that a ghost may even follow you home, and she believes it to be true!!! It took quite a lot to convince her it was all made up, she takes everything so literally and was screaming in my ear almost the entire time and holding on really tightly.

So after we finish the haunted mansion and small world we get to watch the fireworks that Disney puts out which are spectacular, I loved them and so did the girls!!! Then next we wanted to go on the carasoul and flying dumbos. So all four girls and I get on the carousoul while Brian waits with Stephanie's wheelchair. The girls all loved it and then Disney grants a wish for all of us riding it to ride it one more time, so we went around a second time just as another torrential downpour started down right on Brian!!! Poor Daddy!!!

So when it was time to get off we raced like mad to the castle and raced like mad to the Ferry and then to the front gates and then had a rest room stop for Caity at the front and another agonizing quarter mile dash to the handicapped parking lot, this time there seemed to be even more rain and even more standing water and greater misery because now it was cold outside too as the temp had dropped so it was horrible!!!

We were nearly crying it was that miserable trekking through all that rain and standing water in the lots. So we get back to our hotel and change yet again and crash for the night!!!

This morning we went to a big gift shop after we checked out of the hotel and we picked up a few things the girls wanted, although they each had $25 to spend and bought souvenirs already at Disney World, we let them get a few little trinkets for a couple bucks. Then we did something pretty cool!!!

We went to the worlds Largest McDonalds on Sandlake Road in Orlando Florida!!! This place is Massive, I have never seen anything like it in my entire life. This McDonalds is two stories, features a bistro and pizza kitchen and has possibly a 100 menu items! It also has a huge play place, arcade, foos ball, soccer, gourmet coffee and desserts, ice cream, a prize redemption center, gift shop and the most luxurious rest room I have ever seen in a fast food place or any place for that matter! The place was so huge that I felt kind of overwhelmed and we decided to leave after about an hour of letting the girls play and we ordered through the drive through! Brian got a philly cheese steak extra value meal the number 23, and I got a number 25 extra value meal which was a gourmet bacon Mushroom Swiss burger!!! Anyway, now we can say we were at this famous McDonalds!!!

Well just wanted to update, it was a very long weekend, and despite the upsets we did have fun overall I think!!! Thanks for checking in and reading this very long update! Be sure to watch the slide show below too, but be forewarned that it is very long!!!

We love you all!!!

Love,
Mary and the Girls

Wednesday, April 2, 2008 9:20 PM CDT

Hi Everyone,

Just wanted to update to let everyone know that we are all doing good. Stephanie seems to be feeling better with her medicinal combos and it is helping any pain she was feeling immensely, praise God!!! She still complains frequently about her legs and tummy but overall I would guess that there has been about an 80 percent improvement from where she was so we are just so thankful!!!

Caitlin, Meagan and Kristy are doing great too. They are on spring break this week from school so everyone is just trying to relax and enjoy it! This Saturday we are going on a family weekend getaway to Disney World and a stay overnight in a very nice resort Saturday night after Disney, before the kids have to go back to school on Monday. We are all very excited and it is a much needed vacation for all of us, although a short one! We cannot wait, since it was so impromptu we just told the kids tonight and they are jumping up and down and smiling just so big. I think it will be so much fun especially for the girls!!! All Meagan can talk about tonight are the princesses, she and Caity want to meet them all and also Donald Duck. I will have to get lots of pictures. This will be the first time going for Stephanie, Caity and Meagan and Kristen went when she was only 2 years old so she really doesn't remember.

Anyway, that is about it, certainly not boring news this time, but not bad either. Exciting and happy news is good too, we have had enough of the pain and sickness around here so now it is high time for a little fun! We will be bringing Stephanie's wheelchair to the park on Saturday just to make sure she doesn't over do anything and plenty of sunblock and a nice hat to keep her covered up. Can never take too many precautions when dealing with Lupus!!!

Thanks for checking in and continuing to pray for us, and please keep all of our friends in your prayers too!!! Especially the Ross Family, and Melissa and Hailee!!! We love you!!!

Love,
Mary and the Girls

Thursday, March 27, 2008 11:12 PM CDT

Hi Everyone,

I am sorry if I worried anyone because of the lack of updates! We are doing alright, Stephanie, Kristen, Brian and I all had a nasty stomach virus last week and Brian and I were both very ill Saturday with it, but we recovered nicely in time for Easter. Well, It may be a boring update, but to us boring is great!!!!! Yay boring!

Stephanie's rashes have miraculously healed now that she has been on the planquenil for almost 4 weeks. Wow I didn't know she would respond this fast to it but it sure looks like it is helping, praise God!!! She is still having lots of tummy and joint pain but we can control most of her joint pain with the Celebrex, hopefully we will see an improvement on that as well when the Planquenil begins to fully kick in.

Other than that everything is pretty routine here. We we are really hoping to that Stephie will be able to transition back to school from her home bound program after Spring break which starts Monday, we shall see. It all depends on her level of pain really.

Caity-Did is doing great, she has quite a new affinity now for chatting on the phone with her best friend from school also named Katie. Every day after school she asks me if she can call her, and it is so nice to hear her giggling with a best friend. She also has been asking me every day if she can go outside to blow bubbles, I think she is obsessed lately!

Meagan has not wanted to go to school lately, I don't know why but she has been pretty clingy to me lately and wants to be with me at all times. It doesn't bother me too much though because I was thinking the other day that in 5 more
months she will be heading off to kindergarten and we won't have as much time to spend together then, so I am enjoying what is left of our time before that happens!!

Kristen is sad that her friend our new neighbor moved back to New Jersey for 6 months, they had gotten very close. It was sad to see Britany go but they will be back permanently in September so they will see each other again! Hopefully the time will pass quickly for them.

So how is that for a nice and boring update? I quite like it very much myself! I hope to have many more boring updates to come, wouldn't that be something? lol I can always hope!!!

Thanks for continuing to check in! We love and appreciate all of you so much and thank God for such wonderful friends!!!

Love,
Mary and the Girls

Monday, March 17, 2008 9:15 AM CDT

Hi Everyone,

Thanks so much for the prayers for my friend Melissa, I am still very concerned about her and have not seen any update since Saturday, but will let you know as soon as we hear anything else.

On to Stephanie, she is sick again. We did not get to see the ortho on Friday either because I messed up on the time she was supposed to be there, I thought 10:30, but it was supposed to be 8:00, so I felt like a big dufus. Anyway they rescheduled for April 4th and she is supposed to see the nephorologist this week at 10:30, the actual times for these two appointments were confused by me. I feel so badly and still cannot understand how I was not more careful about writing them down correctly, ahhhh well, I guess it is the stress.

Anyway Stephanie went to church yesterday and was out in the sun with her youth group which is a big no no, especially when you have Lupus!!! She reacted just horribly and she has there huge rashy patches on her feet that are horribly painful for her. She was wearing her boot and a Mary Jane Croc on her other foot without socks. Then the other day she had a reaction to some ant bites so her toe looks just awful with rash. She may need some topical ointment and antibiotics, poor baby is suffering just terribly. Seems as if lately she has had a multitude of rashes and some recent mouth sores too, so I believe her Lupus is in an active flare, maybe they need to give her something stronger to get it in remission and control this flare.

I will post some pics of her later and these rashes, she told me the other day that I am as bad as the paparazzi!!! lol I just want to document these though because they come and go so often and the sun always makes her skin worse.

The other thing is that we have began fundraising for Walk for Lupus Now and we have started our own team called "Team Stephanie Lauren Templeton" The walk and fundraising generates awareness for lupus and the monies generated fund patient education and support and research for Lupus. It is such a horrible disease as we all can attest to from what Stephanie has endured so far, but just think of all of the people, especially children who are even far more affected than Stephie is!!! Lupus patients have overactive immune symptoms and instead of their immune systems protecting them, the immune system instead attacks the organs, bones and joints as if there is a constant infection. Lupus can and often does involve multi-system organ involvement which is not only limited to the skin and joints, but also can involve the kidneys, heart and lungs among other organs. Some patients still die from Lupus, although treatments have greatly reduced this number. Unfortunately, despite treatments there is no way to stop the course of Lupus or the damage that it causes to the patient. Some patients can go into what they term "remission" only to have a "flare" which then again can progress to more damage. Lupus mostly affects adults, but 20�f all Lupus patients are children, and just as this disease affects no two people the same, the future is unknown as to how it is going to affect her permananetly, we are so blessed thus far that there is no major organ involvement. Yes she gets a lot of UTI's possibly from the Lupus attacking her kidneys, but some people have it much much worse!!! We pray for a good outcome for her and a future where there is a cure for all people who have been diagnosed with Lupus.

Anyway here is the link where you can sign up to join our team in our Lupus Walk, we would love to have you join us if you can on May 17th at Tropicana Field in Saint Petersburg. If you can't though or are out of state, you can register as a virtual walker and still donate to the cause right from this link:

http://walkforlupusnowgf.kintera.org/faf/r.asp?t=4&i=264609&u=264609-208373864&e=1596826444


We have raised $100 already in the past 2 days but our goal is $1000 by the day of the walk! We appreciate anything you can donate, no amount is too small!!! I also hope to see some of you sign up to walk with us and meet Stephanie!!! If the link above does not work I also put the registration and donation page in the links below which should be click able. Thanks so much for checking in and God Bless!!!

Love,
Mary and the Girls

Saturday, March 15, 2008 10:03 PM CDT

Please Pray for our good friend Melissa (Hailee's Momma) she is so very ill and hospitalized and they won't even let Hailee come up to the hospital to see her. We are all worried sick about her, it sounds like a very serious illness but answers are slow in coming and she has been ill since August. They have a new page because they accidently deleted Hailee's old CB page and the new link is:

http://www.caringbridge.org/visit/haileesangels

They are also having serious financial issues right now as Melissa was the sole breadwinner and are in jeapordy of losing their car and home because Melissa has been so ill and subsequently hospitalized. Hailee has Mitochondrial Disorder and Seizures and Autism and requires specialized care, so this is a very critical situation and they need our prayers!!! They are such special people who have always cared about others immensely. Now they need others to show their love for them!

Also, I am wondering if anyone who reads this residing in the state of North Carolina could point me in the right direction as to resources that may be of help to this family so they can not worry about losing their home in this time of illness. Melissa is feeling even worse because of these extra burdens and she needs to concentrate her energy on getting better.

Please keep on praying for this dear, dear family and go to their site and offer your encouragement, she just sounds so defeated and it is breaking my heart because I know what that feels like too.

Thanks so much and God Bless!!!

Love,
Mary

Thursday, March 13, 2008 11:59 PM CDT

Hi Everyone,

Tomorrow (Friday) Stephie has an appointment with Dr Backus her orthopedist. I am not exactly sure if we still need to go since we are now treating for the lupus, but since she still has a considerable amount of pain in her foot we think it is just best. She is on Celebrex twice per day, Prevacid 2 times per day and the Planquenil now and I am not sure what else she may need. She developed another rash today on the top of her left foot, almost looks like a horrible sun burn, it is also on her pinky toe. She is also complaining of one of her toes tremoring on it's own and said it happens a lot and has been going on for awhile but she never told us sooner because she thought it would stop. I am not sure what thats all about, but we will ask the Dr if it is anything to be concerned about.

Tonight Caity-Did is not feeling well. She had a terrible stomach ache and curled up in a ball on the couch. She wanted me to rub her tummy for her and said that perhaps she ate too much today. I don't think she ate that much, maybe she has a virus. Poor kiddo!

Monkey Meagan was not at all tired tonight as usual and exhausted us all with her energy. She has taken quite the interest lately with helping her Mommy make dinner, and is so independent!!! Tonight Caity was telling us that she saw one of her special ed teachers in the hall at school and the teacher "high fived" Caity. Meagan interjects, and this is really where it gets funny; "yeah Caity you played Patty Cake with your teacher" Caitlin told her "NO she high fived me Meagan, your a baby and play patty cake in pre-k, but I am not a baby!!!" Then Meagan says to Caity very patronizingly, seriously and almost nonchalantly "yeah, but I'm in middle school so I a big girl now, I don't play patty cake anymore Caity!" Brian and I were laughing because it sounded so funny to hear Meagan make that up and sound so convincing when she said it to her sister. Meagan has a very wry and sarcastic sense of humor sometimes.

We have some new neighbors with two kids, a girl aged 12 and a boy who is 10. They just built and moved into their home and are from Pennsylvania. Kristen has a new friend Britney to play with and has been playing with her everyday after school. They have been riding bikes and rumor has it that Britney has quite the Barbie collection and she even got Kristen to play Barbies with her. it was pretty amazing to me because Kristen has never been the type of kid who was interested in dolls, but she really likes her new friend which is wonderful! Britney is in 6th grade and Kristen is in 7th but they get along very nicely and it makes me very happy to see Kristen socializing more because she should be at this age!!!

I better get some sleep, have to get up early tomorrow, thanks for the continuing prayers and for checking in! we love you!

Love,
Mary and the Girls

Thursday, March 6, 2008 10:50 PM CST

Hi Everyone,

The word for today is Plaquenil, this is the medicine that Rheumatology has decided to try with Stephanie, it is a antimalarial drug used to treat Lupus. They have heard my pleas and I believe that God has first and foremost heard all of our prayers. I Sent a heartfelt email to the pediatric rheumatologist that is treating Stephanie earlier this afternoon. I came across more rash pictures of Stephanie from the last 10 months that I had forgotten about and that coupled with a new rash on both palms she has developed, new sores on her scalp and the flaking scalp problem back, a new arm rash tonight that looks horrible, and again this severe knee pain, got me really upset. Thus I emailed the Dr, asking her if she would re-evaluate for lupus, I included 25 pictures of rashes over the last 10 months too for her to "see" and also let her know that a rare cause of mesenteric adenitis is lupus, and that perhaps in light that we have already ruled out malignancy, infection and parasites we should still consider lupus as a cause. Furthermore, I reminded her that Stephanie is suffering from these severe headaches, sensitivity to sunlight, odd skin sores, rashes and the arthritis type pain but scans show no damage unlike arthritis.

I also found out that one of the diagnostic criteria is hematological and can involve low lymphocyte counts under 1500. Well, turns out I found one of Stephanie's old lab values from May 2006 and her lymphocyte counts on that date were low at 14.6. So I asked the Dr. if she could pull Steph's records and please check to see if any of the other bloodwork also showed low lymphocyte counts because if any of them did it would be considered one category of the diagnostic criteria as this count needed to be low on at least 2 occasions. She needs 4 of the 11 lupus diagnostic criteria to be diagnosed and we are certain she has at least the 4 of this criteria now, perhaps 5.

Anyway, when I returned home from work there was a message on my machine, about 2 hours after sending my email to her. The message stated that they want to phone in a prescription immediately for Plaquenil to our local pharmacy and see how she responds. They said over the phone that this drug will help her tremendously with her joint pain and rashes and is used to treat Lupus Patients. They want me to call them back ASAP, so in the morning I will do that.

Does this mean she has a final diagnosis? I don't really know, but it sure feels like we are on a road to answers and we are getting much closer. It feels like a weight is being lifted and I am so relieved because soon we can concentrate on helping Stephanie and she won't have to suffer quite so much I pray. I have to call Rheumatology back in the morning and see what they say, but it is looking like this has been Lupus all along, but the final word will be with her Doctors, and the true test is to see if these antimalarial drugs will work. I understand that this would be a drug she will have to take long term and it may take several months to reach effectiveness.

I will update more later on tomorrow after I speak with the doctor, thanks so much for checking in and your prayers, God does hear them!!!!

Love,
Mary

Sunday, March 2, 2008 10:52 AM CST

Hi Everyone,

Lots to say! Stephanie had the bone scan Friday which she did well with but was extremely uncomfortable because she had to hold her legs straight and in a fixed position for such a long time. My sister and myself were allowed to be in the room with her during the scans and we noticed many tears streaming down her face because it was hurting her so bad to lay that way. She was so quiet that you wouldn't have realized how hard she was crying unless you looked at her face to notice all of her tears. It was so sad, she did her best to remain stoic, but it must have felt unbearable to her. They needed some extra pictures of her foot and hands so it took about an hour instead of the 20 minutes they said it should have taken.

After we finished we immediately went to radiology at the big hospital to get a copy of her PET scan on Disk and the report itself. It was not as all as bad as we thought it would be though and said the largest mesenteric nodes were now under 9mm which we thought was great and also that the nodes are more significant for number than they are for size and it did NOT indicate that they have increased in number since her last CT!!!! It also said no evidence of imflammatory bowel disease or malignancy was seen so that is G-R-E-A-T!!!!! We are very pleased with this information to say the least, it is a tremendous weight off our shoulders.

Now after the Scan on Friday morning, Stephanie had all kinds of trouble walking and was crying and cringing with every step. She had to cling to the walls and steady herself on us for support to get to the bench while my sister pulled around her car to the front of the hospital. Then yesterday morning she couldn't hardly move at all to get up off the couch because she is again complaining about her right knee. Actually she was crying and her pain meds were not touching her pain. Brian asked me if I thought he should take her to the ER because he was so worried. I told him no, she just had the bone scan the previous day and the ER wouldn't be able to do anything other than expose her to unnecessary radiation from x-rays. So I decided to email her Orthopedic Doc at Shands, Dr. Backus.

Dr. Backus emailed me right back! Not only did she advise me of what to do but she emailed me the results of the bone scan and all of this on a Saturday! What a Saint! Here is what she wrote:

Dear Mrs. Templeton,

I am sorry that Stephanie is in so much pain. Since I have your signed email communication consent, I can discuss her bone scan. It was nonspecific and was not suggestive of fracture. It was read as:

1. No evidence of inflammatory arthritis.
2. Minimal increased uptake in the right forefoot which is nonspecific.

There are no associated abnormalities on the plain films done a month earlier. This could be secondary to altered weight-bearing after boot placement.

I would keep using naprosyn and icing the knee. I would not suggest taking her to the ER, since there is nothing else they could offer at this time. We may want to consider casting her for symptomatic relief. Just a though. Did they schedule your GI appointment yet?
:) Katerina Backus

She later sent me another email after more correspondence with her that reads:

I think aqua therapy will be the best. I would have to evaluate her further, but perhaps she has a component of complex regional pain syndrome (also called reflex sympathetic dystrophy). I don't think this is her primary problem, but it may be a contributing factor. It typically happens after an injury of some sort (sometimes can be a minor injury), and the nerves in that area become "testy" or "hyperactive". This is often treated with aggressive physical therapy (or aqua therapy) and sometime we do a short course of prednisone and a medication that helps decrease the excessive nerve pain stimulus. I would like to see her again, and go over everything. When you call the office, please mention that you talked to me, and that i would like you to be in a new patient slot OR the last appointment of the day. That way I will have more than 15 minutes alloted to spend with you, and we can discuss all of our options. Talk to you soon!

Katerina A. Backus, M.D.

Clinical Assistant Professor
Pediatric Orthopaedics
Pediatric Sports Medicine
P.O. Box 112727
Gainesville, FL 32611-2727


Henceforth, as you can see they are looking into other possibilities as to the root cause of some of these issues. Perhaps this foot and knee problem stems from the injury she had at age 8 where she had originally fractured her foot in three places, and it is possible that she could have reflex sympathetic dystrophy, among other things, as Dr. Backus stated she does not believe that it is the only thing and we are likely looking at a few issues here. Yet it is a start. And the symptoms do fit including the minimal increased uptake in the right foot on the bone scan which is non specific for a cause. In any case I think we are getting closer to some answers! Praise God!!!

I have to run but will write more later! Please keep on praying for her!!!

Love,
Mary

This is a slideshow of Stephanie's sweating and rashes dated from 2/29 - tonight March 2nd, just wanted to post this as well.

Wednesday, February 27, 2008 7:37 AM CST

Hi Everyone,

We saw the GI yesterday. They took the detailed history looked at some of her previous records, did a rectal and decided that all of Stephanie's issues are likely not GI related, however they want us to increase the Prevacid and gave us a list of foods to avoid to see if that might help Stephie's tummy pain some. They want to see her back in June, and I was informed that if it was decided that a biopsy would be needed it was not Gastro who would do it, that it would have to be a general surgeon referred by oncology. So thus far nothing in the way of answers there anyway. Gastro does not feel she needs a colonoscopy or other tests from them as of right now.

So back to the drawing board. I called oncology at Shands yesterday morning as instructed but received a message back when I returned that her doctor is out of the office till next week and would I like to consult with a colleague. I told them no, only because I don't want to chance getting stuck with yet another unfamiliar doctor or worse yet someone with no experience, so I told them we would wait until he returns and schedule next week with him to discuss her PET and if there would be any next steps.

I hope and pray it is not a malignant process, but we need a definite answer that it is absolutely NOT either way to proceed with the Rheumatology avenue and the treatments they have in mind. At this point it feels like we are at the end of a long chain and that oncology is keeping us there, because although they didn't initially feel it is a malignant process, they can't yet tell us for sure one hundred percent either that it is not a malignancy and are still keeping a watch on Stephie. Therefore whenever I am to call there they will squeeze her right in, which does nothing to comfort our minds, even though I know they are doing what needs to be done because of her varied symptoms. We just want them to rule their end out!!! I think the only way to certainly rule it in or out is with the darn biopsy. I don't know why everyone is slow to drag their feet on that. I know there is a risk blah blah blah, but she is suffering needlessly in the mean time.

Stephanie's foot is still really bothering her and she has a big purple bruise on the top, ankle swelling and pain in both toes that are supposedly healed now, and severe knee pain in both sides. Her tummy and head still hurt very badly, and she is going through severe hot flushing episodes where her whole body gets burning and heat sensations that pass within a few minutes. It is so strange! She is also VERY tired and everyone is commenting that she seems to be sleeping all of the time, which she frequently is now. I would say she is awake for about 8 hours every 24, and when she is awake she complains she hurts. The GI doctor noticed the rash on Stephanie's hands yesterday and it does have a technical name, it is a type of eczema, she wrote down the name for me but I lost the slip of paper. darn! Anyway, she said to make sure we show it to a dermatologist if we can, just another specialty in our long list.

The bone scan is scheduled for Friday morning at 7:30 am, hoping it shows us some kind of reason for these bone issues she has been having!!! I will keep everyone updated nonetheless. Praying for wisdom that only god can provide! Thanks for keeping her in your prayers too!!!

Love,
Mary

Monday, February 25, 2008 7:47 PM CST

Hi Everyone,

The Dr.'s office called me today regarding the PET scan that Stephanie had. Although the nurse tried to make it sound like it was not all bad, it did nothing to ease my mind and we still are basically having to wait. The nurse said on the bright side there were no masses or tumors(Thank God) the organs appear good, and the largest lymph nodes seen on the scan were measuring 9mm instead of 11mm like the last CT, and also there is no evidence of inflammatory bowel disease on the PET. Yet, bothersome is the fact that the darn lymph nodes lit up on the pet scan at all, and I was told by the nurse that the bad news is that the mesenteric lymph node numbers have increased even more since the January CT scan she had, but we still don't know why and neither do the doctors.

The nurse practitioner then asked me when we were scheduled to see oncology again, ugh. I told her not until April 15th, but she told me she was forwarding the PET scan results to Dr. Shahlaee and said that I needed to call Oncology tomorrow morning and ask Dr. Shahlaee his interpretation of Stephanie's PET scans to find out where we need to go from here based on what he thinks. She also said that we still need to keep the GI appt tomorrow even though it did not show any inflammation of her bowels on the PET or CT, because if oncology still wants to do a biopsy it is the GI that will be doing that. So they are also getting a copy of the scans I was told. UGH!

I wish I could say that my mind feels more at ease but it doesn't. More hurry up and wait I guess for us. It is a Good thing that I have God to help me bear this weight on my shoulders, because I could never handle so much worry on my own, it is exhausting to feel so worried for your child! I just keep praying for an answer and a good outcome to all of this and I know God will see us through this, whatever happens.

We have GI clinic tomorrow at 2:30pm, and I have to work in the morning so going to get some rest. Please keep on praying for Stephanie!

Love,
Mary

Saturday, February 23, 2008 7:56 PM CST

Hello Everyone,

Went and visited with my Dad yesterday, he is on the telemetry unit at the VA, but I guess so far they have not noticed anything unusual with his heart since being hooked up to the monitors Thursday which is a GREAT thing! They still have not got a sedated scan because my dad still has his own reservations about that, but the monitoring is not showing anything alarming. They did say that my dad has an enlarged prostate and his PSA (Sp?) test was high, but they don't believe he has cancer and said a very large percentage of men over 70 have enlarged prostates, which may be the reason for the high reading. We also know that he has arthritis in his hip, and they were able to see that on his x-rays, perhaps that is why his legs bother him so much? A few of the medical staff were smiling and laughing when they learned that I was his daughter, and they said he is always on the move and they can't keep him down!!! I laughed too, actually that is a good thing because it just tells me he will be okay, that is normal for him to not sit still!!!

Stephanie is sick tonight. She is running a fever and has been sleeping quite a bit since we returned home from her PET scan yesterday afternoon. She did real well for her scan and the staff told me that she was perfectly still, making it a whole lot easier for them to do the scans, they commented that there are some adults who cannot even stay that still, they said she was a great kid and couldn't believe she is only 11 because she seems so mature. Made me proud of her, of course I always am though! Then Grandma Kathy took her and I to TCBY to reward her for her hard effort, and then we went to see my dad. While we were visiting Grandpa Bob she started flushing really bad though, her face looked red as a beet and her forehead was dripping in sweat, and she started complaining that she just didn't feel well. This was happening in the air conditioned hospital as it frequently happens at home too and is just not normal. So we cut our visit with grandpa short because her legs were beginning to bother her too. It was a struggle for her to walk back to the car, the VA hospital is huge and our parking spot was a long way out. When we got home she crashed on the couch and wanted me to sleep by her so I took a little nap next to her. I didn't sleep long though as a tremendous amount of heat was coming from her body, her back was burning with heat and she was sweating badly. Poor kid, this happens constantly, I know it has got to be hellish for her, I cannot even imagine how she feels, it was hard enough for me just to be near all of her body heat. Extremely uncomfortable.

We were told to call Monday for the PET results, so we will be doing that. She has discovered a few more lumps under her skin which worries me even more, today she found a few small ones under her armpit, they are very tiny, much smaller than the ones in her neck and the ones we feel in her tummy, but what is causing all of this??? That is the million dollar question! She also has been complaining that her palms were itchy, and when I inspected them she has dozens on tiny red dots under the skin of her palms and fingers, and looks like flaky skin on the fingers. Maybe some kind of eczema rash??? Anyway, please keep on praying! My girl worries me so much, seems as if there is always something and she never catches a break! This has been non stop now since September!

Thanks for checking in! We love you and will update again soon!

Love,
Mary

Thursday, February 21, 2008 5:28 PM CST

Good Evening Everyone,

Just wanted to ask for extra prayers for my dad who is Grandpa Bob to the girls. We are concerned about him, they admitted him to the VA hospital yesterday because he may be having some heart problems again. Many years ago he had a blockage and underwent bypass after having a few heart attacks, now they are worried about his heart again. The doctors tried to run some tests on him today but apparently he could not sit still enough for the tests (he is almost 79 years old) and the doctors want to sedate him now so they can get some clearer pictures, but my dad is very scared and told us that he is feeling anxiety about needing the sedation for the tests. He is at the Veterans hospital in Gainesville which is right next to Shands where I am bringing Stephanie tomorrow anyway for the PET scan she is having, so I should know more tomorrow. I plan to drop in to see him and talk with his doctors too. Please pray for this anxiety he is having and Gods comforting reassurance so that my Dad will know and that all of us REMEMBER too, that all of this is in HIS (God's) capable hands!!!

Stephanie is alright, she still hurts in her head, stomach and joints and still has some neck pain, but she has some swollen lymph nodes in her neck now too, so that is likely why her neck is bothering her. It is not unbearable for her, just uncomfortable especially when she is trying to sleep. She is doing great on her homebound schooling and really flying through her assignments, I am proud of her! She is one smart kiddo, to have so many problems, it is amazing all she can still manage to accomplish so much, but I am sure her school work is a nice distraction and makes her forget about her problems.

Stephanie told us the other night that her pain is constantly there and that she really hurts badly most of the time, but she said that she is getting used to the pain now, and that makes all of us feel really sad for her. She should not have this many problems at 11 years old. My mom told me the other night that she has elderly neighbors in her apartment building who have not had as many problems or have been to as many specialists as poor Stephie! Truly heartbreaking, we need answers soon, truly.


Received a call from the school today to come get Meagan. Her teachers are concerned about her, they say she has been acting like a space cadet all week in school, they say she looks extremely tired and falls asleep in class on them and they are having a hard time waking her up. Miss Enis said she literally walked the halls with Megs five times to get her to wake up and she would seem awake and then her little knees would buckle under and she would be sleeping again during the walking! They also commented that Megs is zoning and doesn't appear to be herself, so they think maybe she is either coming down sick with some virus because she started coughing today or she may have some kind of sleep disorder that we may need to check into. Remember the problems last year???? Thankfully it does not seem anywhere near those issues again, but we do need to keep an eye on the situation I guess. I am guessing she is not feeling well too and that is the explanation but we will keep an eye on her. She seems ok at home, other than morning time when I try to wake her and she becomes combative!!! I always figured she was just not a morning person and hey thats ok!!!

Caity is doing really well in school and we got some very wonderful comments from her teacher that she is progressing so much better than she was in the beginning of the year! That made me so happy! I am especially proud of how well she is doing in Math, she keeps on amazing me as always. On her report card she made all A's and B's with the exception of two C's, but all of her work is on grade level so that is quite a feat for a kid with Autism!!!

Well better go, have to wash my supper dishes now! Thanks for the prayers, we do appreciate them so! We will let you know about Stephanie's PET scan and about my dad when I update next!

Love,
Mary and the Girls

Monday, February 18, 2008 4:22 PM CST

Hi Everyone,

Everything is about the same, no worse though and Stephanie is actually doing pretty good this week all things considered! Her 6th grade classmates all made her cards which her teacher Mr. Barlow had Kristen bring home to her and they really made her smile and brightened her spirit immensely!

As for news, Shands called us today, they have scheduled Stephanie for something called a PET scan on Friday the 22nd, and then next Friday on the 29th she is scheduled for a bone scan so we will be getting those out of the way soon.

We still need prayers, they are always appreciated!!! Thanks for checking in and we love you!!!

Love,
Mary

Wednesday, February 13, 2008 12:33 AM CST

Hi Everyone,

Sorry for not updating sooner as we still don't have any news or know what is going on with Stephie. We did go to the oncologist clinic again on Monday, but really they are of no help as of this point. The office was practically deserted as most of the regular doctors were gone and we had to see a 4 year medical student that said he actually graduates his program in 4 months. It was of little consolation to us though because he went on about how we needed to rule so many other things out before proceeding with a biopsy of her nodes. He said that biopsies were expensive and that there were about 15 other causes for the mesenteric adenitis that she does have that we needed to get tested for first.

I explained to him that she has already had a large host of tests but being the rheumatologists felt this was Psoriatic arthritis, that they felt it necessary for her to have a biopsy and bone scan to rule out potential malignancy before they could start her on trial medications, (because there is still too much question) and how I was concerned because of the nodes I could feel now in her neck and her continuing joint pain. He said that he doubted it was psoriatic arthritis and asked me if I knew how rare that diagnosis was! I told him I had never heard of it before but that is the direction rheumatology was going in and they were the ones who thought it.

Yet he really didn't do too much more for us other than to get his superior. So the other Dr. came in and spoke with us and listened to everything we had to say. She was nice and said her gut was telling her autoimmune from the history and everything we told her, but she could certainly agree that Steph needed to get the bone scans and biopsy before proceeding with the medications that rheumatology wants to try, so she said she would speak to Dr. Elder and proceed from there. Her thinking is that perhaps when GI clinic schedules the colonoscopy they may be able to reach the lymph nodes in steph's abdomen to biopsy them without having to do a needle biopsy or cutting them out, but that of course depends on how deep and how accessible the lymph nodes are when they go in.

So we are to continue to watch Stephanie closely in the interim and keep the upcoming appointments. She still has pain in both knees, in her ankle, in her feet, in her abdomen, burning sensations of her skin that make her hot all over, horrible night sweats, severe headaches and her neck is still bothering her quite a bit. I feel so drained for her, I know she is really hurting. Please keep praying for her!

We will keep you updated and thanks for the prayers, love and support!!!

Love,
Mary and the Girls

Friday, February 8, 2008 3:00 PM CST

For todays news, spoke with the oncologist at Shands again who saw her on Jan 22nd, told him about the three lymph nodes right above her collarbone. He wants me to bring her in now ASAP, only we could not today because we would never make it enough time to see him, so he told me to schedule for Monday and let scheduling know he authorizes the visit due to sickness. So I did that and we are going up there Monday at 1:30 pm. He told me to watch her closely this weekend and if she seems to get worse in anyway with her neck pain or other symptoms to bring her to the ER. Today she is complaining that her neck really hurts again, it is concerning but we are trying to hang in there! please keep those prayers coming!

Love,
Mary

Friday, February 8, 2008 1:59 AM EST

Just wanted to ask for prayers for Stephanie. She has been complaining for at least three days that her neck hurts. We thought maybe she slept on it wrong, but earlier tonight as she was crying in pain I decided to feel her neck and she screamed it was hurting and I noticed her neck feels "full". She didn't like me even pressing in lightly because it hurt her so much, so I asked her to just make sure she didn't feel any lumps in her lymph nodes. So she starts checking and a little lower on her neck (upper chest)right above her collarbone she announced to me that she has found two lumps and let me feel them. Stephie said that the lumps don't really hurt unless I pressed in hard, but it is worrisome, they feel like two tiny peas under her skin. So I am a wreck again, because she has enough issues already that we really don't have the answers to right now!!!

Going to call that Oncologist back tomorrow and let him know, I think they are enlarged lymph nodes, but sure hoping I am wrong, I would love to be way off the mark here. But we have more than enough reason for concern here about her. She is still sweating profusely for no apparent reason and that seems to be increasing as well.


Stephanie now also has a lump on her heel, on her good foot which she pointed out to Brian and I this afternoon! It is protruding and feels like bone, but have no clue what it is, it is obviously a swelling of some sort, but there is no pain associated with it and it feels VERY rock hard like bone.

Needless to say between the severe joint swelling/Pain and abdominal pain she keeps having, the lumps, the mesenteric adenitis, swollen lymph nodes in her chest, sweating, burning sensations on her skin, fatigue, foot fractures for no apparent reason, headaches etc, I am so sick with worry!


Please keep praying, I will update more when I call the Dr. tomorrow.

Love,
Mary

Thursday, February 7, 2008 12:29 AM CST

Hi Everyone,

Well I think we may be on the road to answers with Stephanie again. Yesterday we had another visit to the Rheumatologist at Shands, but Steph was in a world of pain in both knees and could barely walk. Thus they saw her struggling and finally noticed her pain level, but they also noticed something none of us have before. for the last few years Stephanie has had a flaky scalp problem which is severe and we have always assumed she just had bad dandruff. Her scalp flakes so bad that whenever she brushes her hair the white flakes fly everywhere despite the fact we have tried several extra strength dandruff shampoos nothing has ever resolved it, but I never thought it would be something important to let the Dr. know about, as to me it seemed irrelevant. Well apparently not, they noticed it yesterday and inspected her scalp further and discovered scaly red patches that they believe are psoriasis of the scalp and they believe she may have something that accompanies it called "Psoriatic Arthritis". They said they have drugs to treat it but they can't do anything yet because there is still a question of malignancy based on Stephanie's abnormal abdominal lymph nodes and her foot issues which they are concerned about right now. Stephanie's right foot where they said she had the two broken metatarsels is badly bruised at the top, with a very swollen ankle and the area where supposedly the break had healed is extremely tender to the touch so they are concerned. So now they want to contact the oncologist again and ask for this biopsy of the abdominal lymph nodes to be done soon, and they are also going to order a bone scan soon for Stephanie because they feel there is too much question.

So that is the jest of everything right now. Stephanie has been extremely fatigued and she is still sleeping as I type this, when she is awake she is hurting. We go to see the GI doctors on Jan 26th so that is the next thing on our agenda, but of course perhaps the bone scans and biopsy may come sooner, don't know till they call me back with the times. We also need to get back into Orthopedics again because something seems very wrong with her bones in her foot. It is always one thing or another around here.

We are all hanging in here though. Thanks so much for checking in on us and signing the guestbook and for the suggestions which are always appreciated! It does get very overhwelming and frustrating sometimes as I am sure you already know! We love you!

Love,
Mary and the Girls

Sunday, February 3, 2008 10:55 AM CST

Hi Everyone,

The Oncologist Dr. Shahlaee called when I was at work (Thursday Jan 31st) and left a message that everything looked good so far but that he wanted to speak with me so I called him back. Anyway, he told me that he was happy with the the labs and there was no blood in stool or parasites from the tests he ran. But he said he still wants Stephanie to keep her April 15th appt with oncology anyway, and asked me to watch for and call him or his colleagues immediately if I notice Stephanie having any recurring fevers, severe night sweats, a 10 pound or more weight loss, bruising, shortness of breath etc.

He said she still has mesenteric adenitis and he also wants us to see gastro again, and also possibly see about having tests run for tuberculosis and aids. I told him she had the tuberculosis test and ruled that out a few months ago, and I asked him why she needed an Aids test. He said it was just to eliminate it, and he is certain it is not aids as he knows that it would be highly improbable as no one else has it. He also said that when he sees Stephanie again April 15th he will repeat the abdominal CT as those nodes need to be monitored.

Stephanie came down very sick again on Thursday she was burning with fever and complaining that her stomach was in pain and complained the inside of her tummy burning most of the night Thursday and Friday. Even her shirt against it which is light was hurting her. Stephie keeps complaining of burning sensations in her body, it is strange because her skin mostly will feel cold and clammy when she gets these sensations and she begins to sweat profusely. She also had a sinus type infection and sore throat Thursday so that added to her misery quite a bit. On Wednesday she had came and got us because there was bright red blood in her stool when she used the bathroom so it was concerning, but we have not noticed anymore since, and she has not had any diarrhea so have no clue what that was!!! Saturday (yesterday) her legs were bothering her a great deal when we took her shopping for new pants, she said they were achy and feeling tired so she needed to find a bench in the store to sit on and took frequent breaks from walking, poor baby! Will see the Dr. Monday. We also got back a refferal now for Gastro at Shands for February 26th. So that is good! I am still worried but we are hanging in here!

Please keep praying!

Love,

Mary

Wednesday, January 23, 2008 4:44 PM CST

Hi Everyone,

We are still back to square one, but Dr. Backus the Orthopedist at Shands was extremely helpful to us and vowed to us that she is going to do some homework in regards to Stephanie and her very strange constellation of symptoms. The bad news is they could not locate the MRI that showed the break in December, but the good news is they x-rayed her knee, foot and ankle and can see NO breaks there whatsoever! Yet Stephanie still has a terribly swollen ankle (The baseball size knot has returned) and broken blood vessels on the skin of her foot and that coupled with everything else going on with her health wise has Dr. Backus concerned enough to want to help us figure all of this out. She also asked me a ton of questions and said that she was a practicing pediatrician first before going back to school to become a orthopedist and her gut feeling is that this is autoimmune in nature, perhaps something like Crohns or of that nature but she is not sure just yet.

The Dr. wanted to see the old scars on Stephanie's skin too from the sores she occasionally gets and said although she has never seen such sores in person, they look like and remind her of sores she has seen in classic textbooks that may occur in severe cases involving gastrointestinal autoimmune diseases. She is also concerned about Stephanie's continuing low blood pressure which yesterday was 106/39 (diastolic very very low and they checked 3 times because they almost couldn't believe it) and the mesenteric nodes in Stephanie's abdomen and joint pain and swelling.

Dr. Backus told me she is going to confer with Dr. Elder (Stephanie's Rheummy at Shands) and see what they might be able to come up with together and said if she thinks of any more leads (medical wise) we can go on she will call me in the next few days. She also said how lucky we are to have Dr. Elder because not only is she a top notch Rheumatologist but she is the only one in the state of Florida of her kind! Thus Dr. Backus told us to make sure we keep our upcoming February appt with Rheumatology and Dr. Elder and she kindly told Stephanie that she promises she will not give up in the search to help us find our answers, because she too knows something is wrong. Then she added that surely someone within the minds of Shands hospital would figure this out, after all this is a teaching hospital and if anyone can they will, but it just might take a little more time unfortunately.

Another referral has been put in for Shands Gastroenterology, as Dr. Backus thinks we should try to get Stephanie some more tests in case this is Crohns, so we are awaiting that. A lower GI was never done, and we need answers!!! Thanks so much for the prayers because I can tell you today I believe God is bringing forth some wonderful angels in the medical field, especially Dr. Backus who has vowed to do some homework and help in any way she can!!! In addition Dr. Backus has ordered 6 weeks of PT for Stephanie and said since the cam walker boot seems to help her so much she can wear it as long as she wants to and feels comfortable doing so, it will not cause any harm, so that is good news too.

God bless you all and thanks for the continuing prayers, messages and love you continue to show! We love all of you!

Love,
Mary

Tuesday, January 22, 2008 5:15 PM CST

Hi Everyone,

We just returned home from Stephanie's appt with Oncology a little while ago. He was pretty thorough and asked many questions in regard to her history. He told us he does not feel it is likely that she has a neoplastic process occurring (Thank-God) however he has not had the time to review the CT scans yet from Sept and This month and compare them so he wants to do that first before deciding on a biopsy of the nodes. Thus he said he will be doing that in the next few days and will call us back if he decides on a biopsy. He also ordered a chest x-ray to check her Thymus gland and he ordered some blood work before we left. He gave me his card and told me to call him at the end of the week if I have not heard from him sooner. He also said that he wants to see Stephanie back on April 15th and if things have not improved he wants to consider a pet scan or other necessary measures if she still continues to have problems and if the nodes enlarge. At this time he is wondering if it is an issue for infectious disease, or rheumatology but would like to help us in ruling out any type of cancer. All in all he seemed like a good Dr. and eased our minds a great deal. Tomorrow we go and see the orthopedist, they cancelled on us for last Friday so she goes to them first thing tomorrow, will update again soon! Thanks for praying and keep on praying! We love you!

Love,
Mary

Wednesday, January 16, 2008 9:44 PM CST

Hi Everyone,

We were mixed up about the date of the Orthopedist appt, it is Friday morning. We also received a call back from Shands today they want to see her in the Hematology/Oncology clinic on Tuesday Jan 22 at 10:30 am, so that is coming soon, thank God!!!! The Oncologist there asked me to bring copies of the CD's from the CT scans she had this month and in Sept and I am also going to bring in the September radiology report so they can compare the findings of the two exams.

Not much else to report, everything is basically the same!

Keep on praying!

Love,
Mary

Tuesday, January 15, 2008 9:53 PM CST

Good Evening Everyone,

We spoke with the head peds nurse for the Oncology/Hematology clinic at Shands today and she said she had our referral in hand. I asked her what next steps were and she stated that the head Oncologist would first be reviewing the endoscopic pathology report and the CT impressions in order to make a determination of when Stephanie would be worked in as they prioritize all of the referrals coming in according to the interpreted urgency. Yet, she was very kind and reassuring to me that it usually doesn't take very long to work the patients in and I could expect a call very soon as to the Dr. consult and appointment date for the biopsy. The nurse told me she had a report on Stephanie that is 36 pages long, so obviously there is a lot for that Dr. to review.

As for Stephanie she is still not feeling all that well, but really no worse either so that is good. She is still having tummy problems that keep her up all night because of the pain, the urination problems that have recently recurred; and she is losing a bit of weight. Her skirts and pants are falling down now literally and she asked me to buy her new ones tonight because they just won't stay up. We believe that it might be because now that she has her cam walking boot she is again more active and hence the reason for the weight loss. We are just thankful she can walk!!!

Tomorrow (Wednesday) she goes to her othopedist who will check on her knee and foot and see how that is progressing.
Tonight we pray for a good night of sleep for her as it is so difficult for her each and every night because of her tummy pain. Why is it that it always seems much worse at night? There is not much we can do to ease her pain either, no amount of Naproxen, or Motrin will touch it and she has been declining the offer because as she says "It is of no use" she feels pain no matter what.

I feel awful that I have not said much about Caity-Did, Kristen or Megs lately in the journal. They are doing well and it is just Stephanie's issues have preoccupied me quite a bit, I am still so worried about her. I am trying to distract myself with other things as of late because it is so worrisome, I cannot even begin to tell you. Please keep praying for her and Thank-you so much for doing so because we all know God does hear the prayers.

I will update again tomorrow and let you know what the orthopedist says and if we have any new news on the referrals.

Love,
Mary

Monday, January 14, 2008 6:38 PM CST

Hi Everyone,

Many calls were made back and forth today between the pediatrician and us and finally we received word tonight that they faxed all the medical records and test results from Gastroenterology and Stephanie's recent CT and biopsy recommendations over to Shands' Pediatric Hematology and Oncology department.

It was not pleasant, the nurse at the pediatricians office was kind of smug and remarked that there was no telling how long Stephanie would have to wait for an appointment with Shands and that if we were willing to take Stephanie to ALL CHILDRENS or Saint Josephs Oncology dept we could get in much sooner. She then proceeded to tell me they do not like referring to Shands because it takes so long to get referrals in. Is it just me or does this sound hypocritical? I mean here they waited themselves 6 days to tell us about Stephanie's abnormal CT and then they are pot shots at Shands, perhaps we better take the plank out of our own eye hmmmm?

Anyway, the reason we prefer Shands is because it is close to home and that is where most of her medical records are, and the other specialists who saw her including her Rheumatologist and Orthopedists that are seeing her for her broken foot; and also because we did not like the Tampa Gastro docs at all, remember how mean they were to poor Stephanie telling her she has these abdominal lumps because she is "fat'? I would not have these people care for my dog much less for Stephanie if this turns out to be much more serious than we even thought. Those Tampa Gastro Docs did not even order a CT scan while she was in the hospital in their care, we had to beg the pediatrician to do that ourselves 10 days ago, then to find out about all of these abnormal mesenteric lymph nodes filling her abdomen, it makes me very mad.

Stephanie is having problems again with urination and has not been able to go at all today and has slept a great deal of the day because her stomach hurts badly. She also feels hot when no one else does and her forehead and back get drenched in sweat, it is 50 degrees outside and I am shivering in the house so there is no reason for it. I do know she needs this appt for biopsy soon. I am going to call Shands tomorrow to ask about the status of the referral and continually call them until they give me an answer, and if I don't hear anything by tomorrow we go to Shands for her ortho appt Wednesday anyway so I will be making an appearance to find out when she is going to be seen. This is getting to be frustrating!

Please keep on praying, will post again soon!


Love,
Mary

Friday, January 11, 2008 3:38 PM CST

Hi Everyone,

We are trying to get in for a biopsy at Shands. The Dr. was scratching his head as to what he should do. He said he has never had a child in need of a biopsy before Stephanie, so he did not even know who he should refer her to or how to proceed. :::rolling eyes::: I could say something here, but I won't.

This is a word for word excerpt from what the final radiology report and the impression reads:


Findings

"Multiple mesenteric lymph nodes are seen through out the mesentery. The largest measures appz 11 mm in greatest length."

Impression:

Excessive Mesenteric lymph node numbers without any enlarged lymph nodes demonstrated. The changes may represent an infectious or inflammatory process. Certainly the possibility of a primary or secondary neoplastic process cannot be entirely excluded. The patient may benefit from lymph node biopsy for additional characterization."

Anyway, we called Shands ourselves and faxed the final radiology report to the nepherologist there who saw Stephanie is December and he called us right back and advised us to call shands gastro dept right away. So after a couple quick calls we had to phone Steph's pediatrician back and let him know where we needed the referral sent. I hate to sit on this, but looks like nothing will be done till next week at the soonest since the weekend is almost upon us.

Anyway, keep on praying! It is all in Gods hands whatever this is, and God is in control. This we know!!!

Well better run! Our love to all and thanks for checking in and continuing to pray. We will keep you posted!

Love,
Mary

Thursday, January 10, 2008 11:10 AM CST

4:30pm EST update 01/10/08

Dr. just called, said CT scan was very abnormal. Don't see any masses but "excessive" amounts of lymph nodes filling her abdomen and they are reccommending a biopsy asap. I am numb, I am scared for her, and I am just scared in general. Please keep praying! I will keep everyone updated we have to see Dr. in the morning.



_________________________________

Hi Everyone,

Still don't know the CT results, we were informed the Dr. has them and would be calling us but that still has not happened and they have had them since Tuesday afternoon. Don't know if I should be worried or relieved at this point because I keep wondering if something were not wrong, would they not just let the nurses call me back to tell me everything was good? At the same time if something were wrong wouldn't they have called me already? I just don't know but we made an appt to see the Dr. tommorrow at 11:00am and he will discuss the CT results with us then I guess. I figured I better make the appt because no one is showing any kind of urgency either way to tell me it is normal or not normal.

Steph is still in great pain with her tummy, getting bad headaches daily and complains of a bad burning sensation in her abdomen that is also in her back and spine now too. I don't know what the deal is, but she still has those tummy lumps and cries every single night for me to "help her" because she feels as though she is suffering and none of her medicines are helping what she is experiencing!

She does go to see her Orthopedist next Wednesday so will keep everyone informed on how that goes. Please keep on praying for her! Our love to all!

Love,
Mary

Tuesday, January 8, 2008 7:08 AM CST

Still awaiting those CT results, . We called there yesterday but they did not have the final report so we are still waiting. Going to call the Dr. again this afternoon to check the status and see if they get them today, hoping they do. Stephanie had me feel her stomach yesterday with 4 fingers and I feel lumps in there everywhere now, would not surprise me to hear them say they are swollen lymph nodes. I would think they are just too numerous to be anything else. We shall see, wondering in the meantime what is wrong. I will update again when I get the results. Thanks for the prayers!

Love,
Mary

Friday, January 4, 2008 7:42 AM CST

Good Morning,

Stephanie is having an abdominal CT scan at noon today because her pediatrician wants to check on the lumps in her tummy and find out what they are. The Dr. pressed in on the lumps when Stephanie was in his office the other day and she screamed in pain. He was surprised that they did not do an abdominal CT at the hospital, especially because of all of her pain there. Anyway, she has a bad ear infection right now and is on Z Pack for it, and she complained to the Dr. about more knee pain too.


Please keep on Praying! We will let everyone know when we find out about the CT results.

Love,
Mary

Wednesday, January 2, 2008 7:02 AM CST

Happy New Year Everyone!

Sorry it has taken so long to write in the journal. We had a very nice Christmas and New Years with Family, and before we knew it time had flown! Stephanie is walking with her cast but still has not seen the orthopedist, Brian got very lost and took her to the wrong place so they are getting her another appt soon now that it is after the holidays. She is really no better other than being able to walk because her knee still aches. Then Last night she was up at 4:00am crying her eyes out about her stomach hurting badly, and she has had more headaches, rashes on her face and sore throat with ear ache. Poor baby just seems to hurt all over.

Today I am taking her to the pediatrician because of her tummy, but not really sure it will do any good. I don't really know what he can do to help her, she has already tried Prevacid, Pepcid and Zantac and Malox....nothing seems to touch her pain. There has got to be a reason she has this abdominal pain, just wish we knew.

Meagan has been reverting to toddler like behavior these past few weeks so that is trying too. I think she needs more attention because she has been taking off and hiding, to worry us sick! A few days before Christmas we were in JC Penney and I went to grab a children's pair of character socks, she was right with me one minute and then suddenly gone the next! I had all 4 girls with me but not one of the other 3 girls saw where she went and we called and called for her to no response. Thus the store had to lock down and called a Code Adam. Well she was missing for about 10 minutes after several frantic searches around the store, a kind British lady who was doing some shopping found Megs. Meagan was under a skirted sock table in the section we had been the whole time, and the other shopper heard little giggles coming from under the table!!!

Talk about not knowing whether to scream or cry, or be happy or mad. I was very glad to see her but she gave us such a scare! I am shopping for a harness for her now needless to say. Don't think it should come to harnessing my child and have never had to get a leash for any of the other girls, but I will have more peace of mind knowing she is safe when we go out. She does not understand the consequences of her actions, she does the same things over and over again despite any discipline she receives, and is extremely impulsive.

Caitlin is doing well, she got her Hannah Montana Guitar for Christmas and some Hannah Montana DVD's, and Hannah Montana Dolls (Her new obsession) so she was thrilled! She has been such a help to grandma Kathy who just had a total knee replacement. Caity is helping walk grandma's pugs Sam and Wednesday. Kristen is doing well too, but I think she will be glad when school resumes on Monday because she misses it!

We are supposed to be planning on a Disney World Vacation for the summertime, Brian's brother Bill (who is 11 months older than Brian) and his wife Laura and 3 kids are wanting to come to Orlando and meet up with us and Grandma Kathy. They live in Ft Worth and the kids have never met their cousins, so it would be great because they are all the same age just about! Andrew will be 12 in March, Courtney will be 10 in March and Thomas just turned 4 in Sept, so they should all have a lot in common!!! The kids are excited, not to figure out how we will ever afford it is the big question!!!!

Well I better go, have to call the pediatrician for Stephanie. Thanks for praying and continuing to check in.

Love,
Mary

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