Saturday, June 19, 2010

The Calm Before the Storm



Well, today was a pretty easy-going Saturday. We finished moving into our new BMT suite (and it is sweet) and finished cleaning our old unit. Nice to be moved in to our new home for the next 3-4 months. The unit is about 900 sq. ft. When you walk in, there is a vanity and full bath to the right. Straight ahead through a small foyer is a living room with a pull-out sofa, a glider, a dinette with 4 chairs, and a kitchenette complete with microwave, 2 small fridges, toaster, COFFEE MAKER, sink, and some counter space. If you turn left from the front door, you enter the bedroom, which has 2 queen beds, Bella's pack and play, a built-in bunk bed with ample storage underneath, two HUGE closets, and a nice-sized built in desk with built in shelves and drawers from which I am now typing. I said I'd video tonight, but I didn't get around to it, and I'm the last one up (I'm always the last one up... my quiet time), and I don't want to wake anyone with my video commentary. We LOVE our unit, and we LOVE this place (the Ronald McDonald House). It is so awesome. The staff is AMAZING, there is an endless river of volunteers, and the other families make you feel like you're not alone in your journey. Man, some of the stories I've already heard... like the guy whose 1 year old is getting a HEART TRANSPLANT. Yup. That's right. A HEART transplant. At 1 year of age. INTENSE! In addition to the non-stop activities for Ali, the constant flow of free meals is pretty sweet. I say that now while my pants still fit. However, tonight I began a program to help with that...

...I played in my first soccer game here! My man Maurizio called me today to invite me to play on a team he plays on. It was at Como Park, which is great because it's a huge park with a FREE zoo and kid's amusement park that is just BUILT for Ali! While Ali ran around and rode pint-sized rides, I ran around the soccer field after the ball. Ang tells me that not running or lifting weights currently may have something to do with why I don't move as fast as I think I should. I dunno. What do you think?



After, we came home, we drummed up some hefty leftovers in the RMH kitchen, then headed upstairs. Ali and I went out looking for bats with a glow-stick toy she was given, but was unsuccessful finding any.

Bella's dressing change went pretty well today as well. She watched Baby Mozart today. The toughest part right now is caring for her new Hickman Line. She screams a 10 out of 10 in pain when I clean around the line. It has 2 sutures holding it to her skin, and the skin is angry around the line. The chemical I have to use to clean it causes the poor girl to scream like nothing else has ever caused. Thank GOD we are here and not in an apartment complex. The cops would have been called by now FOR SURE. Here, everyone just understands. Whether someone's kid has Epidermolysis Bullosa, or any other type of disease, we all just... understand.


P.S. This "it stays light out till after 9pm" is really messing with our schedule! We haven't gotten used to it yet, and the kids stay up later as a result, so we get almost no time to ourselves as a couple. That's a drag, because I just miss my wife, ya know? The other thing about the light here... it's brighter than back home... like the glare has a more intense quality to it here. We think it's because there's no smog to diffuse the sun light. I'm only half joking here.

Well, it was the last Saturday of its kind for a long, long while. It was nice to not see any docs, nurses, tests, etc. Tomorrow is that last day like that for a while, too. Hope everyone sleeps in. That would make an EXCELLENT Father's Day Gift!


Thanks again for ALL the prayers and comments on the blog! It really touched us to hear from so many people we don't know personally. Those comments are like OXYGEN. Please, keep 'em coming.

13 comments:

  1. You are truly an amazing, strong family! We think of you all daily and are constantly sending healing thoughts your way!

    ReplyDelete
  2. Loving the updates Tim! I enjoy catching up on the MN trek of your journey everyday. Thinking about you all and sending lots of good juju from NY. Love you to all. LaurenBev

    ReplyDelete
  3. I am praying for your family deep in the heart of TX, I am a manager for McDonalds so I love that the RMH is taking care of your family. I volunteer at the one in Dallas with my crew. Stay strong Bella!! Ali you are a great sister and your parents are so proud of what you are doing to help Bella.

    ReplyDelete
  4. Thanks for the updates. Sounds like you guys are really getting settled in. Sorry that the dressing changes are so painful for Bella. It must really break your heart to hear her cry.
    Hope you have a wonderful Father's Day Tim and I'm sure the girls will be on their best behavior. Give Bella and Ali a hug and kiss for me. Prayers and hugs are coming your way. Love Leah's Nana

    ReplyDelete
  5. Happy Father's Day to an exceptionally loving and strong Dad. So prowd of you.
    Wish I was with you all now. July 14 sounds far away. But I am with you in spirit, following your daily blog, and sending love and prayers for you all.
    Mom

    ReplyDelete
  6. TY so much for the updates. I am praaying hard for you all. I hope your little girl flies throught the BMT and never has to remember all the pain EB has given her. I feel so awful that you have to hear her cry out in pain when you are doing her cares. I am sure it breaks your heart every time. I love the photos. Please keep them coming as you go through the BMT. God Bless you all. Brenda Unzen RN From MN

    ReplyDelete
  7. Happy Father's day to a very amazing Daddy with a very special family! It is just so awesome what you are doing! :) Take care!
    Lydia

    ReplyDelete
  8. Stay strong!! You are in our prayers!!

    ReplyDelete
  9. So glad you guys moved into your new digs, Ali got a fun time at the park, you got to play soccer, and you guys had an overall relaxing day. Hope you've had a nice Father's Day today too. Thinking of you guys all the time. Hugs.

    ReplyDelete
  10. Such a pretty girl... love that last picture. Hope you had a great Father's day!

    ReplyDelete
  11. Hope you had a great Father's Day Tim! You are a great dad and your girls are so lucky to have you as their biggest supporter! Please let me know when you need a little R&R and I'll hook you and your family up with some lake and boating time!

    Praying for you daily

    Dayna

    ReplyDelete
  12. Sounds like you are settling in well. Como Park and the Mall of America are two of my favorite places to visit on our return trips to MN. You may have already heard but on Tuesdays the MOA does Toddler Tuesdays for kids 6 and under. Kids eat free at most of the restaurants and the amusement park offers a three hour unlimited ride wristband for $9.95 (for the kiddie rides). I am glad things are going so well at the RMH! It sounds like the perfect place for your family.

    I hope you had a great father's day!

    ReplyDelete
  13. Happy Fathers's Day Tim! Love that last photo of Bella-just beautiful.

    ReplyDelete