Friday, April 11, 2008

Long day, but sunshine

Our 1st day of Remicade for treating Charlotte's uveitis (arthritis in her eyes - iritis) and it was long & sad & tough for the Momma & Daddy as you can only imagine. But after my tummy is happy with dinner & Ellie & I have had been relaxing tonight hanging out making homemade greeting cards & listening to books on CD, I have a chance to reflect & be appreciative.

(The other two girls were: Charlotte went to bed early tonight - its exhausting yelling at nurses all afternoon & Emma went on date night with Daddy to have dinner & to get her new golf clubs - getting ready for the summer).

Here's what I am thankful for:
  1. A girl who's a fighter. Its hard to see my baby in pain when they put the IV in & it pops out so they have to try the next vein (literal sweat is beading off my face as well as Charlotte's. Picture Ryan dancing behind the nurse trying to get Charlotte to NOT look at the IV continuing to come in and out & fish around). She let them know how mad she was today - OH BOY. I told her that she had to calm down, she just had to calm down & it would be over soon. And truly, "Charlotte, even Dior Waterproof Mascara is not going to hold up on a day like today if you continue to scream. Shhhhhhhhh!" But truthfully... I am glad she's able to share her dislike, her anger & her spunk, even if it does make me cry a little.
  2. Nurses who appreciate spunk. Our nurses knew us from our January 3-day adventure with the steroid Methylpred (which worked, but not for long). They said, "We knew Charlotte was here when we heard the scream of 'NO' down the hall! We are SO happy to see her" - but they meant it! They werent being facetious in any way. But seriously - look at this girls face of furry & frustration & you KNOW you have to have some amazing nurses who are patient, loving & sweet to continue laughing & being so congenial! And now that we are "regulars" we had the chance to converse (It was a slow friday in the Day Peds Treatment Center today!) & get to know them a little more. What a small world too: One nurse (Chelsea) is getting married to a Theta Chi brother of Ryan's (a few years older). Another nurse was a Kappa at UPS & so I jotted down some names (aunt carol that you might now) of her sorority sisters! She was just a few years younger than my aunt who is her sorority sister. ALSO: the nurses gave Charlotte her MTX shot this week but intravenously so we dont have to do it on sunday (YAY!!!! thank you for saving me a week!)
  3. SUPPORT! OH my word - we have amazing, supportive, giving, spirited friends. Friends that are willing to give up their afternoon just to come & hang with us, bring us lunch, chocolates & toys for Charlotte. Friends that didnt allow us to cry in a pity party, but continued to stay & talk & keep us stronger. Dawn & her sweet girls Emma & Ellie (! yes!! Isnt that terrific?!) & Cindy - Ryan & I appreciate you SO MUCH. Thank you, thank you, thank you! Just your understanding, your ears, your thoughts are so appreciated, so valued & I hope you realize what an impact you have made on Ryan & me, to help us be strong, to help us be more knowledgeable. Thank you!
  4. FRIENDS part 2! My neighbor Kim filled up her ipod with Mickey Mouse Clubhouse, Signing Times & Sesame Street & loaned it to us for the afternoon. It convinced me that NO portable DVD player purchase is necessary, not only is this more maneuverable, but easier to manage & tote around! And it was so smooth to just play episode after episode (at LEAST 6 episodes of Mickey) because we were there from 12-5pm - it was a slow drip!. The emails that you all sent saying you were thinking of us today - i felt it, thank you for your good & positive thoughts! (And Laura, Ba-Ba Elma was a HUGE HUGE hit, she's sleeping with him tonight! Thank you for the JRA 2's fellowship!)
  5. Our Dr. - He spent so much time with us today, talking, sharing. In between patients, he would come up to our floor & check in on us, not once but twice. We appreciate him immensely because of his caring, his knowledge & his passion for doing the RIGHT thing. We know he's serving Charlotte well! Let me also say I am thankful for Dr. Goodman & Dr. Foster who have all been working together cohesively on Charlotte's behalf. We look forward to our trip to Boston to meet Dr. Foster in person (do not have that set yet - on Monday!) & have an extremely thorough & detailed examination done.
  6. My parents - so glad they are back from their trip & they are able to live their life but be right there for the girls so that life can be normal for them without any hiccups. They were traveling during the the 3day methylpred in January & it was hard to not have them here & to schedule the girls to be here/there/everywhere. Now I know that's one thing I dont have to think about, its just done. My mom said, "I wish I could be there" - just like a mom I know she doesnt want me to go through this, she would easily replace herself with me. I love her for that, but she's right where she needs to be & so is my dad (Ellie will bring you a box of band-aids, she said you cut yourself today out in the yard?! Thanks for teaching Ellie how to pull weeds!!!).
  7. Babylegs Leg Warmers - Again, out of sight, out of mind. They were tremendous. Bought two new pairs, she chose the pink herringbone to wear today. And she was so proud to share with Nurse Chelsea that, "They came in the mail! I got new ones! I like pink!"
  8. Our family - I am thankful for the girls who asked how the day went right when we got out of the car. How excited they were that Charlotte got a new toy (& they asked Charlotte to show THEM!, so generative!) & how sweet they were to ride bikes with her up & down the sidewalk even though she was crankier than crank because of the long day. I am so thankful that Ryan has the career flexibility to be at all of these milestones because he would be frustrated if he couldnt be. I appreciate him being there because of his calm demenor & his understanding of Charlotte & her personality & his willingness to jump when we ladies say jump :) He's a prince!
  9. The Small World - The nurse connections were one thing, but when we first got there, we settled into our room & watched a sweet chunky little angel waddling by (just a new walker!). I commented out loud on her cute babylegs legwarmers (yep they are popular!) on her sweet little legs. But I said it continuing to look at the beuatiful girl, I didtn realize that as I looked up, I knew her Momma as an OSU sorority girl - a comrade my senior year of being a rush counselor with me. She was a Kappa Delta, but we spent many long nights togheter wtih representatives from other chapters helping the freshman girls of OSU decide who to pledge allegiance. I appreciate reconnecting with her, even if its not the most positive of circumstances that we are seeing each other under, our paths are crossing again & its opportunity for friendship & support.
  10. STRENGTH - just writing out these positives, gives me strength to know we CAN get through this, we can endure the screams & the agony of the anxiety in our baby. Because there are positives that come out of "these" situations & by focussing on the path of healing will help us feel its road is much shorter.

Now I will tell you that its supposed to be 75 degrees this weekend! And in the Pacific NW, that's something to party about! So we are hitting the pavement tomorrow morning for a run then it will be off to the driving range to try out the girls new clubs. Sunday - its the BEACH, for a day excursion! No matter how cold it is over there, I have to remember to bring extra clothes because somehow the girls ALWAYS end up in the water (I give it about the 1st 15 minutes!).

So Carpe Diem! Celebrate Health!

4 comments:

Heaven's Eye Phtotography said...

I couldn't take it anymore...I finally cried half way through. Not out of pity, just out of sympathy. I am sympathetic to the situation because NO ONE wants to see their kids deal with life's curve balls. Thank you for sharing and please know that you are in my thoughts and prayers. You are a beautiful writer and someday the girls are going to look back on this journal and thank you. One day they may need these stories and emotions to get through their own lives as parents. Keep up your strength. Kathy

Loudest Mom said...

So glad you're THROUGH for the moment :) What trooper you all are. Great perspective on everything! We're thinking of you all- enjoy the beach and the sun!

Lori said...

I'm with Kathy - I was crying too. I can't imagine how hard those days must be, and it's beautiful to see your appreciation in everything around you and the strength you have. It's amazing!

Hope you're enjoying this beautiful weekend - your whole family deserves it!

Take care!
Lori

Lisa Milton said...

So sorry it was such a long day (I am just getting back into reading my blogs, and missed the prelude).

I hope the remicade kicks in and starts taking names.

I think her spunk is going to serve her well - keep her feisty as she faces ongoing medical treatment. It's so tough, being 2 and going through so much.

You are in my thoughts. Enjoy your weekend, and take care.