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Tuesday, March 15, 2011

The Big Week Ahead


Sent by Nicole Sunday 3/13

            Wrenn’s six month tests are Monday and Tuesday.  I told one of her transplant nurses on Thursday that I’m going to look at her evaluation as a ‘tell me how great my daughter is doing’ type of attitude.  I think it’s easy to say that these tests are done to ‘catch’ the bad (rejection and/or infection), but this is a very gloomy way to go in to a situation that I once again have no control over.  Anything less than a positive attitude isn’t fair to Wrenn or our family. 

Wrenn lives every minute of everyday with such a sweet innocence.  She enjoys exploring toys, craves and loves attention, cries for her meals and smiles and laughs more times than I ever would have imagined.  She can’t possibly understand why I look at her sometimes with tearful eyes that express great concern and sadness.  She doesn’t know how each test brings on new information and sometimes it won’t be information I want to hear or want to have to deal with.  I wonder every day if I will get better at this as time goes on. What part is going to get easier and are all the hard days behind us? 
           
            I’ve noticed the closer we got to Monday, the more Jason and I talked about the ‘what if’s’.  And I hate that.  It’s then that I run to Wrenn’s crib, place my hands on her little body and say the prayers I’ve said countless times but with more conviction.  I look at how great she looks and in the back of my mind I remember the doctors telling me that she won’t necessarily show any symptoms of rejection.  Rejection can be silent.  Like a spider.  I hate spiders.  I like warning. I like to know what I’m up against.  I want a little bit of time to get out my gloves and smash the evilness down if I feel I’m going to be bitten.  I’m a mom and I want to make it all okay.  ALWAYS!

Over the last few weeks one rejection drug has gone up and up and up in dosage.  I worry that with such low blood levels she’s in danger of rejection.  I think back to the manual and remember how important it is to balance her immune system.  I’ve done several labs over the last few weeks and just hope the medications have done their job well enough.

Wrenn had her 6 month checkup with Rebecca, the therapist at Children’s Hospital yesterday. She was amazed how strong Wrenn had gotten since their last session back in early February.  Since then, Wrenn has been free of narcotics, only takes one dose of lasiks and is standing with assistance.  It’s awesome seeing everybody’s face light up when Wrenn shows off, especially since so many of the ‘best’ were worried that she wasn’t going to get there. Wrenn had many people quite worried during her bumpy recovery.  She continues to be a mystery (like with the rejection levels spiking) but all in all she’s found her spot in this world.  And if there’s one thing I can tell you it’s that my daughter is NOT going to sit on a bench.  She is nosey!  She wants to RUN! And she is going to live a full life and see and do everything possible.  She has such a strong spirit and there’s no way I’m going to hold her back while she explores the world.  With caution, we will support her as much as possible to live a somewhat ‘normal’ life.  


            It hasn’t been easy living in a new city.  Our families are very far away and so that leaves little in the way of going out as a couple.  We take turns on the weekends seeing movies and order in, just to get a break from cooking and cleaning.  I had one local friend from Richmond volunteer to take the kids for a night so we could have a date.  I’m sure we will find the perfect night and take her up on that offer, especially since she’s an RN, which is wonderful since she will feel comfortable with Wrenn’s G-tube and unique lifestyle of staying as germ free as possible.  What a nice gift she has given us.   

Despite how hard and uncertain things are, the people at Children’s made certain to surround us with an array of support.  I have one volunteer, Amanda, who is finishing up her masters in psychology to be a family counselor.  She receives internship hours for helping us out but trust me, she doesn’t realize how valuable she has been to our family.  She is my right arm and is wonderful with the kids.  I feel so blessed that she was assigned to our family.  We will miss her when she leaves for Colorado in late May.  There’s no way we can replace her!

             Our nurse, Deanna, comes to the apartment once a week to weigh Wrenn, checks her vitals and sometimes help me with the monthly labs.  I like that she takes another look at Wrenn and answers my questions in-between clinic appointments. When Wrenn gets her new port for blood draws, Deanna will continue to help out. Deanna and Amanda came from an organization called WINGS, and from what I’ve been told, we are the first transplant family to try them out.  I think God knew I could do this but would need an extra pair of eyes and hands to do so. I’m very thankful for this service.
                       
            I walked by Wrenn’s crib yesterday morning and she was chewing on her binky, rolling all over the place and then five minutes later she was sitting up and had a big grin on her face.  I couldn’t believe it!  She also gets on all fours and rocks back and forth, which is one step closer to crawling.  I’m gonna be in big trouble very soon. 

            The other night Tanner was tossing something over his head again and again and Wrenn couldn’t stop belly laughing.  Luckily, I got it all on video.  Any rainy days will be sunny after watching that video.  It truly makes everything else in the world so unimportant. 

video
            On Monday morning we’ll have the monthly labs back.  This information will tell us if there are any issues and what we might expect from the bronc on Tuesday morning.  By the end of the next week we should have all the results.  On Wednesday Wrenn has her monthly infusion to boost her immune system. Please send us your prayers especially to little Wrenn, who has a very big week ahead of her. 

5 comments:

Anonymous said...

All I can say is she is BEAUTIFUL!!!! I pray that you all get wonderful news and all is going in the right direction. She is such a blessing and no matter what life deals her she will always know she has you and Jason to stand beside her, to support her, and most of all to love her unconditionally. She is very lucky as well! Please keep us informed!

Susan on March 15, 2011 at 9:11 AM said...

Nicole, Jason, Tanner and sweet baby Wrenn:
All of you continue to be in my prayers daily. I pray that Wrenn will continue to thrive and grow. I'm sure these tests are difficult to deal with, but necessary. Wrenn will continue to amaze everyone as she has a strong will. That will has gotten her this far and she is loving life. She's going to do everything in her power to keep getting better because she knows that she has the hand of God on her shoulder. He's brought her this far and He will continue to take her farther in order for her to be big and better things in her life. I wish I could take away your doubts and fears, but that is what makes us stronger too. I am stopping now so I can have a prayer after reading your latest entry. You now hold a very special place deep in my heart and I'm sure the hearts of many others.
Keep the faith and Wrenn and the good Lord will do the rest.
Susan Eisel
Frostburg, MD

Mrs. Muffins on March 15, 2011 at 10:04 AM said...

We wish you only the best. Always in our thoughts and prayers!

Yvette Dennehy said...

She is beautiful! My heart is bursting with joy and my eyes are overflowing with tears as I watch her laughing on the video. She is a contender - not only against her illeness, but for LIFE! We will continue to send up the prayers for this little girl and her HUGE spirit. God Bless you and your family.

Yvette Dennehy (Delaware)

Pam on March 21, 2011 at 9:40 PM said...

Peace and prayers going your way, Nikki! She looks awesome it's hard to believe from her pictures that her body endures so much everyday. You continue to be inspiring. Love you so much!! I think of you everyday.

 

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