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Thursday, March 3, 2011

Rodeo Recap, Sophie Update and How I Roll...

Rodeo Recap... Yee Haw!
Last night was awesome!!! We had a drawing at work for Rodeo tickets from the Nat Gas group at my office. I never win anything, so I was surprised when I got the email saying, “come get your tickets”. I called my mom to see if she could watch the kids. Adam was heading into town last night to see me anyway, so the fact that I won tickets was really an added bonus for a fun date night out.

Our seats were on the 300 level and it was quite an experience. We walked through the carnival area and then up to our seats.

The elevator doors opened to a posh area, that was so much nicer than the regular seats that I’m used to sitting in. I really appreciated that. There were mixed beverages, good food and a carpeted area every few feet with couches and chairs and big screen TV’s. I am totally spoiled now to how nice the rodeo can be. I will never forget how Adam’s face lit up as we pulled into our reserved parking space and he saw the front of Reliant Stadium. I thought it was pretty cool, but for him this was a FIRST. He hadn’t ever been to Reliant, so for him to soak in the whole experience was neat for him, I think. Then, prior to the concert starting they did fireworks. It was so neat for me to see him get so into it.

Then, just as we were waiting for the show to start, four paratroopers repelled from the ceiling with our American flag in tow. How awesome was it to see the American flag unfurled in front of thousands by four of our country's finest servicemen. They then honored a medal of honor recipient from Vietnam and of course I thought of my dad and his service to our great country. It doesn't matter if you agree with our president or congressman, I am proud to be an American today and am so thankful to our troops for sacrificing so much for the peace we enjoy every day. They are a true blessing!


Sophie Update...
This morning, I woke up and started getting the kids ready and noticed when I was helping Sophie with her hair that there was a stitch still in her scalp at the site of the incision they made for the biopsy. Are you kidding me? Grrr… I sanitized my tweezers and scissors and took matters into my own hands. I should be awarded a “DR. MOM” license or something, hahaha…  I’m no sissy, and if the specialist AND surgeon can’t remove the stitches, I certainly can! I pulled on it and was saying in my head, REALLY?? Good grief!!! I took the stitch to work and measured it to see just how long it was (couldn’t find my ruler at the house), and to my chagrin it was 1.4 CM long!!! I tried to remain calm as I gently removed the soucher from her scalp, and she assured me it didn’t hurt. I was seething with anger as I completed the removal and wanted to call the doctor and ask “WHY, and HOW could you leave a stitch in her head?” Because of the “ice day” the original surgeon didn’t get to remove the stitches, so we asked the Histio docs while we were there and they were happy to oblige. Then the pediatrician checked the incision and noticed that there were still like THREE stitches still in her head, and told us to go back to the ENT/Head/Neck Surgeon (the original Surgeon), so we did and we thought she got them all. Well, OBVIOUSLY NOT! GRRR…. Let’s see, How many doctors does it take to remove a little girl’s stitches? ONE! DR. MOM!!! (I know you can hear the sarcasm seeping through the screen… lol)

I don’t know what we’re even doing with all this anymore. I wonder if the doctors even know what THEY’RE doing if they can’t even take souchers out of a 9 year-old’s head. Good grief! I have faith that the Lord will take us through to the other side of these issues and I’m trying so hard to be thankful for the doctors. This just causes me to lose some confidence in the team. Logically, if you don’t know if they even know what THEY’RE doing, it sure makes you question EVERYTHING. Sophie still has headaches and fever every day.  I just want some answers. NOW… I guess that’s where they get the word “patient”, well after months of worry and visit after visit with doctors, I am just feeling discouraged.

What gives me some hope is that Sophie is doing pretty well all things considered. We’re just waiting for the other shoe to drop, sort of. Also, I am completely humbled by the “Rare Disease Day” events on Monday. There was even a balloon with Sophie’s name sent up in North Carolina by a friend I haven’t met yet, Tammy. Her daughter Bri’anna is in Sophie’s age group and has LCH and has survived Chemo. She’s such an inspiration as is her mom. Big hugs go out to all who helped make “Rare Disease Day 2011” an event to remember. And, to those of you who were featured on the TODAY show, I just watched in awe and with a lump in my throat as they panned across the crowd and showed you all holding pictures of the kids and adults who suffer with and have suffered with rare diseases. Too bad the Oscars and the Charlie Sheen fiasco were happening that day. What truly deserves attention is these diseases and finding CURES!

How I Roll...
I am thankful for so much. My God, my kids, Adam, my parents & extended family, my job and my dear friends. And I try not to forget my blessings in the middle of this trial... I do think it’s understandable to be frustrated, though. I know in the end, in my heart that it will be all right. I just do. I will press on toward the finish line knowing that it will and will continue to praise Him along the way. That's just how I roll...

Talk to you soon,
J


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