Gillette: Day 1

Well, today was our first trip to Gillette Children's in Minnesota.  We were at a specialty clinic in Burnsville, and the actual hospital is in St. Paul.  I received an awesome care package from my school family at Willowbrook and our sitter, Angie, for our trip.  It was full of gas cards, lunch money, Starbucks gift cards,  fun snacks for the car, crayons, coloring books, stickers, princess crowns, an adorable new purse for Lia, even some sparkly nail polish and new hair pretties, and lots of fun stuff for big brother Jack too. Not to mention an endless amount of cards with words of support and encouragement, Which, are now displayed on our dining room table, taking up more than half of it.  Every time I walk by, I am reminded of how much love and support we have.  I have literally every word of every card at least 3 times.  Each time I re-read the cards I am so humbled and thankful and relaxed at all the kind words.  I work with an amazing group of people who have come to love Lia even though many have never met her.

Our trip was great, and we enjoyed a nice lunch together before our appointment.  Everything was going just as I had imagined it would.  Then at our appointment, the orthopedic surgeon told us that after reviewing her MRI and Xray imaging, he didn't notice anything that resembled synovial chondromatosis.  Wait?  What?   No, they already told me she has that.  Now you need to fix it.  That's why we're here.  I started to get that lump in my throat, and was fighting back tears.  I know in the medical world that things aren't black and white, and we experienced a lot of that in Kansas City, so I waited for him to give her a new diagnosis.  But as he kept talking, I realized that he was just as confused by her knee and it's swelling as every other doctor she has seen so far. He said he would like to collaborate with a rheumatologist about Lia's knee and wondered if we could come back on Thursday.  Yeah, Thursday like in 3 days.  SO, we are going back again on Thursday, meeting with the rheumatologist and hopefully getting some more answers.  He did go over her MRI with us and showed us where you can see all the fluid and inflamed joint tissue around her knee.  He also showed us the lesion at the top of her tibia which he said is a very small, benign, tumor, that he's not concerned about right now, but we need to watch it as she grows to make sure it isn't growing.  We talked about everything from knee surgery, to maybe just anti-inflammation meds to try and treat it.  So... I have no treatment plan to update you with, or medical terms or diagnosis to share with you, just more questions, and no answers.  As we were leaving today, feeling a bit frustrated, I said "just to sum this up, because people are going to ask, we still know nothing, right?" And he replied "Unfortunately, yes."  

I am hoping that I have a lot more to tell you on Thursday, but faith in God, includes faith in His timing, right? So only time will tell, and I'm not in charge of understanding when or why, I'm in charge of following through with whatever happens whenever it happens.  In the meantime, I'll keep carrying that sweet girl up and down the stairs and all over the house until that darn knee of hers stops hurting.  Oh who am I kidding?  I'd carry her to edge of the world and back if she asked me too.  I'll also keep reading your notes.  They keep me going.   

I love this moment.  It was at lunch.  Lia slipped her arm around my neck and rested her cheek against mine.  I wish you could've felt it.  It was like she was saying "I got this Mom, don't you worry!"  She is so much stronger than me.  

My poor baby spent almost the whole day in the car, and has to do it all over again on Thursday.  She was fighting sleep pretty hard on the way home.  We were watching a Max and Ruby DVD for the 5th time (sidenote: I'm so over Max and Ruby), and peek back there and shes fast asleep with a sticker on her forehead.  Love that girl!