Friday, July 29, 2011

Dog Days of Summer

So, I've been wanting to update my blog for weeks but I have been just so crazy busy that I haven't gotten to sit down at my computer and get it done. So here I sit, my husband is still at work and it's only Chicken and I at home and she's in her room since I've got the NASCAR Truck Race on, lol.

So lets see, last time I posted we were about to leave for our vacation. Oh, we had an amazing time in DC at the Juvenile Arthritis Conference. The kids got to see their friends and my husband and I got to learn so much more about this nasty illness attacking our baby's body. I also got to connect with some mom's I had meet on FB that I had never gotten to meet. Best of all, I got to hang with my favorite JA Mom. And heck, my husband even connected with a few dads. There was also another awesome thing, I LOVE NASCAR and at conference Peck Motorsports unveiled their Kids Get Arthritis Too truck to be run in the Camping World Truck Series. It is so awesome!!!!!! We had a really funny incident during Family Fun night, but I won't got there cause my husband is ready for it to die down, lol.

On our way home from conference my husband surprised the kids and I and took us to Hendrick's Motorsports. My favorite NASCAR driver is out of the Hendrick shop and because Sami was just so worn out from conference she had to use her wheelchair. The shop was wheelchair friendly, so that was awesome. We had a lot of fun touring the shop but the best was in the museum. The sweetest women run the museum and even though it was busy in there the women showed us all around and gave us the stories of all the cars, my favorite was they had Tom Cruise's car from Days of Thunder. But anyway, the one woman just fell in love with Sami so we told her Sami's story so she gave her a lug nut off of one of Dale Jr's cars, I thought it was too cool. Then when we got home home, I was looking over our receipts to see that she also gave us a Hero's Discount, I know it was because of Sami and I just thought that was so sweet.

Now to this week, it's been a busy week. Sami had Remicade on Tuesday and then on Wednesday she saw Dr. N, her Rheumy. I try to make Sami's appts at the end of the day so if I run long there isn't someone else waiting for him but this appt was in the middle of the day, which with all my notes I had from conference and all that has been going on with Sami, I knew I was going to be long but thank gosh Dr. N told me it was a slow day so I was ok. So as you have seen in past posts Sami rashes and all the time, she also just totally crashes and she runs fevers from out of nowhere and I have never understood why, another mom and I have always said that she acted like she was systemic but because of her eyes thought there was no way. Sami was diagnoses in 2009 as Poly with Uevitis and from what I have always read and heard at conference if a child has Uevitis they and not be Systemic. Well, Dr. N says that is totally  FALSE, he has treated many kids that are Systemic and have Uevitis. So needles to say after going over everything he has changed her diagnosis to Systemic. I keep hearing I'm so sorry but you know, it's been a few days and I'm still at peace with it because now I understand why Sami does what she does and I will now know what to do to help her.

So now we have answers that we understand and that is awesome. I hope everyone has a great rest of the summer and I will talk to you all again later, I'm going to go finish watching the rest of the race. :-)


Tuesday, June 28, 2011

Vacation Check List

Over the past few years I have noticed that getting ready and scheduling our vacations have become so different.

This is our 3rd summer traveling with a child with serve allergies and a child with arthritis. So when we look at the calender to pick out vacation dates the first thing we now look at when is Daniel due for his next allergy shots and Sami due for her infusion. Then its on to look at who has doctor's appts and can they be easily moved. Ok, I think we can finally pick a date.

Now how are we going to get to where we are going. My husband would rather fly any were we go so we can get there quicker but as we have found with Sami the cabin pressure in a plane kills Sami's knees. So driving it is, lol. We could fly but then we know a day of our vacation is shot because it totally wipes Sami out and her knees hurt so bad. With driving she does so much better, we can stop whenever she starts to feel stiff and then we're back on our way.

Once we get to our destination we have to watch what the local foods are because for Daniel's allergies. We carry an Epipen at all times but if we don't have to use it I don't want to ever have to use it. Daniel being the older he is very aware of what he should and shouldn't eat, so that helps.

This year's trip will be a bit different though. As I write I am sitting in the All Children's Infusion Clinic with Sami while she gets her Remicade so she should be all good for our trip. But here is were the wrench has been thrown in on us this year. Daniel seems to be developing a new food allergies because his throat closed after eating a sub so after Sami's infusion we will be heading over to his allergist to have his allergies retested. But Sami also seems to be having more problems with her eyes. I took her to the doctor yesterday but she has to go back the day we are to leave for our trip to get her eyes looked at again.

So as you can see planning for our trips have become a bit different. Packing for the trip is a bit different now as well. This is the first year that the first thing that will be packed is Sami's wheelchair. Daddy has always just carried her but she's getting to heavy so now the wheelchair is first on the list along with all of their meds.

Hope everyone has a fun and safe summer!!!!

Sunday, June 12, 2011

Two Years and 1 Day

It was June 11, 2009 that Sami was officially diagnosed with Juvenile Arthritis. It's crazy how the time has flown, lol. The time has gone by like crazy but it hasn't been all cookies and cake. But tonight I'm not going to go into the sad, sappy stuff because we just finished an amazing day so tonight I'm going to talk about the amazing things that have happened in the past 2yrs.

About a week after Sami's diagnoses we walked into the Arthritis Foundation's doors in downtown Bradenton. At our first meeting we met the most amazing women and felt like we were with family instantly. About a week after we meet the ladies for the first time I got a phone call asking if we would like to go to Houston, TX for the JA Conference. Since my husband and I knew NOTHING about our daughter illness we jumped at the chance. In 2009 the Florida Chapter of the Arthritis Foundation was able to send 5 families to conference. It was at conference that we got to meet the first of our JA family and another member of the Florida Arthritis Foundation who works out of the Orlando office. Also little did Sami & I know we would meet a mother and daughter that live in Lakeland that would become our best friends. Conference was amazing and Matt & I learned so much.

Then came December of 2009, our first Jingle Bell Run/Walk for Arthritis. I had always watched my dad fund raise for different events but this time it was my little family's turn to give it a try. Our very first year with the help of our amazing family, friends and the kids' school we were able to raise $10,111. The Tuesday after Jingle Bell Sami had her first infusion. I know I said no sad stuff but it isn't sad, we got to meet more "family". The nurses at the All Children's Infusion Clinic are AMAZING. I love each and every one of those girls.

Now lets move to 2010, actually March 2010. I asked Ann, president of the FL Arthritis Foundation, about the Kids Summit in Washington, D.C. Matt and I have really be into raising awareness that kids get arthritis too so we wanted to head up to D.C. and speak to congress & senate on behalf of the Florida families. Ann sent our family and WOW, what an experience. Daniel moved everyone to tears when he spoke on behalf of his sister but honestly both of the kids made up so proud.

July 2010 the Florida Chapter of the Arthritis Foundation sent 9 families to Philly for the JA Conference. It was there we got to meet a few more FL families and I was once again able to make another amazing friendship with a mom from the Tampa area. Sami and her bff also got to hang out tons because the stayed in class together. They had so much fun and again Matt and I got to learn so much. We were a bit overwhelmed with our first year so 2010 was great. We knew what to expect and I knew to bring the tissues, lol.

I lost my grandpa in August 2010 so we did not raise as much money for the 2010 Jingle Bell but we still had an amazing time and raised over $3,000. Oh, I forgot about the going to our first auction, the Bradenton bunch had a pre Jingle Bell event. It was a silent auction at a beautiful mansion on the water, it was a great time. I was able to be highest bidder on a Bucs football for my husband and Sami had a blast getting all dressed up and having a spotlight shinned on her.

2011, well, we knew we were going to start the year off with Sami having her first surgery but what we didn't know was that All Children's was going to turn her into a little star. Her ortho had asked if he could film her surgery because it wasn't something they do everyday so we agreed to it and then we got another call. This time from the hospital and they wanted to know if they could do a piece on Sami for their telethon. We again said "sure". The Friday before her surgery my husband was filming the new ACH commercial and he met the woman I had been chatting with. He chatted with her a little and told her how she was going to love Sami and thanked her for all that All Children's has done for us. The lady was a little puzzled because she didn't know Sami's WHOLE story so Matt filled her in. So Sami went from being a small filler piece for the telethon to a main story. The day of Sami's surgery and everyone got to meet her I was then asked if they could do an article on her for their magazine. Matt & I were like "ok, this is going to get to Sami's head, but sure because anything we can do to raise awareness." We had a blast filming for her telethon piece and she had a blast modeling for her magazine shoot. Sami even made it on the cover of the magazine, it is a beautiful spread on her.

In May 2011, Daniel, Sami & I traveled up to Lakeland to spend the morning with our best friends at their Arthritis Walk. Our area doesn't have an Arthritis Walk anymore so it was a no brainer to head up that way. I had been in talks with Tony from the Orlando office to surprise our friends but I couldn't hold it in anymore and I spilled the beans. :-) I couldn't keep the secret any longer from my best JA friend.

About a week ago I got the email saying that the Florida Chapter of the Arthritis Foundation is sending 12 families this year to the JA Conference in Washington D.C. And yes I did say TWELVE families, it is just so amazing. We cannot wait to go in July. There are some old families but also new families going so we will get to meet even more Florida JA families.

Today was the All Children's Hospital telethon. It was on from 7am to 6:30pm and Sami's story aired 3 times during it. It was AMAZING!!!! I have never been a part of something like that before. It was really hard to keep my emotions in check but we were there to raise awareness, not for me to be a blubbering fool. The ACH telethon raised over 3.4million dollars today and we were so honored to be a part of it.

So in short, yes my daughter has Juvenile Arthritis and yes it is scary but she arthritis made us find a voice and I want it heard. We now have an even bigger better family and have made some amazing friends. I didn't even touch above about the 2 support groups I am in on facebook, I have made some really amazing friends on them and there is one mom that I can't wait to meet at conference that lives in NC. I mean I love all the moms I have meet on fb but this one mom just stands out for some reason and I can't wait to finally meet her. There is also another mom in the Orlando area who I just love she has listened to me cry a few time on the phone and I greatly thank her and can't wait to see her again at conference.

Ok, I've gotten way off track. I'm just going to end with saying I love our JA family, the amazing people at the Arthritis Foundation and all the doctors and nurses at ACH that give our daughter the most amazing care. If you are a new parent with a child with arthritis please know you are not alone, find your local Arthritis Foundation chapter, contact me, anything because you are NOT ALONE, and I plus our JA family are here for you.

If anyone would like to see Sami's story that was on the telethon I am attaching the link

~ Lana

All of us with hockey legend, Phil Esposito, at the All Children's Hospital Telethon

Thursday, June 9, 2011

The Best Day of My Life

My family owns a motorcycle dealership and I've been riding since I was 3. I taught my son how to ride when he was 5 and my husband has also been riding since he was little. Because of Chicken's JA we have never taught her how to ride because of the fear of her hurting a joint anymore than more than they already are.

With the kids out on Summer Break they are spending lots of time with me at work. My uncle is "retired" but is at the shop everyday, he asked if he could take Daniel out to the field so he could ride. I said yes, because the poor kid already has to spend the summer with me at work so why not have some fun. Sami asked if she could go out too so I let her. My uncle called up to my desk and asked if it was ok if he let Sami ride his grandson's 4-wheel. I told him we've never taught her how to shift or anything so she couldn't. He said it was ok and he'd teach her. I don't think he totally understands how thick headed she is, lol. After about 10 minutes or so I went down stairs and looked out the window to she her riding.

Ok, I may be a crazy mom, but I'm crying right now. It's simply because it was something I never thought I'd see. My baby learned how to ride, it isn't 2 wheels, but it is a huge start. She knows how to shift and everything. I'm just so proud of her. And a HUGE Thank You to my amazing uncle for teaching her.

Sami riding for the first time with my uncle running next to her :-)

Wednesday, March 23, 2011

Our Little Old Lady

Just Out Of Surgery

We're Going Home

Figuring out how to ride home was kind of tricky until we remembered that my front seats lay flat back

Our Little Old Lady

Image 1 from her surgery

Image 2 from her surgery

Yesterday my daughter had her surgery to repair her Discoid Meniscus and torn Meniscus. Monday night my husband and I decided to take the kids to our local fair because we knew Sami was going to be laid up for awhile. We had such a good time at the fair. My best friend and her family met us there so the kids got a once in a life time encounter. My friend use to me in the circus and is still friends with a lot of people in it so she brought us to her friends trailer and in the trailer was 2 - 2 week old tiger cubs. It was amazing!!!! 

Anyway, back to the surgery. The hospital had contacted me a few days before her surgery and asked if they could film her surgery because Discoid Meniscus is so rare plus they hadn't had anyone with Juvenile Arthritis on top of it. So over course I said yes, but what I didn't realize til the night before that they were going to film the family all day and us it for their telethon. So we checked into the hospital at 7:00am and by 7:30 they were bringing us back to pre op and that's where we were met by the cameras. I don't know if it was because of the cameras but it all seemed to move so fast.

First they brought Sami in a walker so they could teach her how to walk with it and still have her independence. Then another nurse came in to talk to us. Then then Anesthesiologist, shortly after him Dr. W came in. My husband had never met him so it was their first meeting, he went over Sami's surgery again so my husband would know everything. We talked about how at first he was just going to explore, then repair. Her MRI showed a small tear and really didn't show how bad her discoid meniscus was so he really didn't know what he was going into. Her MRI and X-Rays had both shown that she didn't have any damage to her joint from her arthritis but we said if he got in there and he saw some to go ahead and fix it. But before we knew it it was 8:30am and time for Sami to go back. Dr. W told us that her surgery should take about 1 1/2 hours. We walked Sami to the OR doors and when we got there they said to give her kisses and she had to lay down. So we kissed, said we'll see you in a little bit, I laid her down and she put her arms behind her head and said lets go. I laughed cause I thought she'd be scared but I guess it could be exciting to get your knee fixed and have a chance of being pain free.

About an 1 and 15 minutes later my husband and I were paged and the nurse was waiting for us. She said that the doctor was finishing up and he'd be out in just a few minutes to talk to us. We were brought into a room to wait. I swear that was the longest "few minutes" of my life. Dr. W finally came in and he was smiling. He told us he could see why Sami was in so much pain. Once he got in there he found that Sami did have joint damage, and her discoid meniscus was larger than what her MRI showed but he got her all fixed up. He made it into a disc shape again but it is still thicker than the other.

Sami spent about an hour in recovery and then they let us take our baby home. On the way out to my van my husband asked "How are we going to get her in the car with that brace on her leg." So we got to the van and I remembered the last time we went on vacation I was able to pull the seat all the way forward and then it laid back flat. So we laid it down and propped her leg up on it so she could still be in her car seat.

So we are home. About 8:00pm the medication Dr. W put straight into her knee wore off. My husband stayed up with her so I could get a little sleep. Then this afternoon her knee hurt so bad that even when she was sleeping she was crying so I called her doctor and he raised her pain meds. She's going to have 8 weeks of PT but we are so happy we did this. Her arthritis damage is fixed and her meniscus is fixed. He also said he didn't see and flaring so we think once she's all healed at least her right knee will be pain free.

Monday, February 7, 2011

A Bit Stressed Out

It's the eve of Sami's Remicade/MRI day. It's been a busy past few days making sure that everything is going to run smoothly tomorrow. I spent just about all day on the phone on Friday, I had a few problem's with Daniel's medication I had to get straightened out and then the rest of it was spent on Sami. It was after talking to the nurse in Radiology that everything sunk in about Sami. Between her Juvenile Arthritis and her discoid meniscus and her trying to be a "normal" 6yr old there is so much to actually take in. But it was what the nurse said to me, that made it all really sink in, he made a comment about having to run extra labs before they could put her under because of her being on Remicade and a chemo senescent (metho). I almost wanted to start crying after he said those words to me, I've always known the medications she's been on and I've done all the research on them but hearing that was so scary. 

But today, was my favorite. Sami has gone to ACH for all of her infusions and I made her MRI appointment in person and talked to three different people on Friday about her MRI and I talked to the infusion center this afternoon to also make sure everything was ok and I didn't have to do anything different for them. I thought everything was all set and then I get a call from someone in Scheduling and she said you wanted a phone call if we could move your child up and we can so we've moved her to 11am, umm, seriously. I didn't ask for her to be moved if there was a cancellation, she'll be getting her infusion at that time and unless she can get both at one time please keep her at the time I set. So I got her moved back to her scheduled appt time and was about to start breathing easy and my nervous set in. I've got to not let my baby eat tomorrow and I know she's going to be so hungry, she also has to get her Remicade which she usually has reactions too and then also she has to be sedated for her MRI in which I already know that she has problems waking up from anesthesia, so I've become rather nervous. I know my baby will be ok and tomorrow is just a few more steps in getting her better.

I hope you all have a wonderful night and your children are doing great.

Wednesday, February 2, 2011

A Mommy with new hope

I know in my very first blog I said I would update everyone about Sami's knee after we saw her Ortho. Well, that visit came and went and I didn't update my blog. I really like her Ortho and he did new X-Rays and we talked about how her JA is doing along with her Discoid Meniscus. After all was said and done he agreed with Dr. N that she needs surgery to fix her Discoid Meniscus since it is fixable and her arthritis can't just be fixed by surgery, but then he dropped the bombshell on us that he didn't want to touch her. Seriously, aren't you a Pediatric Ortho? So why don't you want to help fix my baby? Granted you are the same doctor that told us it was "Just Arthritis." So anyway, he referred us to another doctor in the his practice. And today was her appointment with Dr. Warnick. Yes, I gave the actual name of the doctor because I was just so pleased with him.

When the kids and I walked out my son said "Mommy, you're smiling and I haven't seen a smile like that in a long time." And yes my babies, Mommy is beaming!!!!! It maybe a cloudy day with a cold front trying to come in but I am smiling :-)

So anyway, Dr. W went into great detail of Sami's knee and drew me pictures compared to that of a "normal" child. We talked about how even when Sami's knee isn't flaring how she's still always in pain, we talked about Sami's knee when she is flaring. And it was when he drew me pictures of how Sami's knee is from the Discoid Meniscus and how it should look is when I really understood why Sami is always in pain. My knee would hurt all the time too if my knee was like that. The MRI Dr. W had to look at is about a year and half old so he has ordered a new MRI so he can see the change in her knee now from the last one because her knee was so inflamed the last time. Dr. W even went on to tell me that if her new MRI still shows the issues with her arthritis that her old MRI shows he says he can even fix some of it. She won't be arthritis free but he could maybe help it. Woot Woot!!!!

Sami has her Remicade on Tuesday and because Sami needs to go to sleep for her MRI I was lucky enough to get this MRI scheduled for the same day as Remicade day so we will go back to ACH next Tuesday for her Remicade, they won't remove her IV and we'll walk over to Radiology for her MRI. I am so happy Sami won't have to get two IVs and this worked out so well.

Pain free hugs to all of you and your babies!!!