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 http://www.youtube.com/watch?v=VfTyPXGdTas

~ 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 :-)