Saturday, September 26, 2009

One Year Ago

Cole is 6!!!! He turned 6 on the 23rd and I cannot believe it! This time last year, we sent him on the vacation with the Winter's to Disney that the whole family was intended to go on. Disney will always be there.........HAPPY BIRTHDAY COLE!!!!!! We love you!
Cruz playing with his sister. Just before this photo was taken, he was lying on the floor with her, had the blanket covering them both and they were watching Sponge Bob together. Too stinkin' sweet.

"Really, I do like this new toy!"

Smiles at lunch time. Trying not to gag on my cereal and bananas!

Watching Maggie talk to her. She must have been interesting! ;-) So serious!

One year ago, JR and I took Lindsay in for her heart cath and never thought that that would be the start of this crazy adventure! Praying and thanking God for having her today. 293 days later, we were able to bring her back home and have begun to experience allot of "firsts" with the princess. We are so eternally grateful for this shot at life for her. She has grown physically and developmentally since we have had her home and feel completely blessed to be able to witness it. My heart has been heavy lately because I have been thinking allot about the donor family. We need to write "the letter" to them, but I have been waiting for the right time to do that. When will that be? During the holidays? I don't know. That would be incredibly tough for me to read if I were in their shoes and still grieving over the loss of a child. I can't even imagine what that is like yet, we were almost in that position. I still cannot believe what a miracle it is that she is here. Very surreal and I just don't know how to explain that feeling to you. Maybe someday I will have the perfect words for it but for now, we are soaking up every minute with her and the boys!

Lindsay has not made much progress with eating solid foods and maybe will need some more intense therapy on that, but for now she is getting PT and OT once a week here at home and really has done quite well considering. She has begun to sit up from a laying down position and sooooooo close to crawling. Our guess is that she is about 6-7 months behind other children her age. Maybe even a little more since she had her coding incident in June after the transplant. Man, can you imagine if she hadn't had that set back? She would be racing down the lawn with her brothers by now! Her eyes are getting better but we do know that she is definitely impaired in her right eye and it still is not centered as it should be. We are still waiting on an appointment with the U of M opthamologist that visits here in town to see what that next step will be. Lindsay is now up to 21 pounds and looking as chunky as ever! She is starting to metabolize better and thus her medications have been increased slightly. Mainly her tacro. (one of anti-rejection drugs) She has been put on a supplement of iron and continues to get blood draw once per week to check her levels. Those are getting easier but some are still a little tougher that others. All in all, we are on a steady track here at home!

Now, back to those "firsts" that I mentioned above. Of course you know about the first boat ride at the lake which was super exciting. Lindsay has also been to a restaurant for the first time now! Of course we were super cautious about her touching the table and we went on a Sunday when it wasn't crowed so it worked perfect. We are starting to get out more which is more "normal" and it feels great! She has been to her first U of M football game party (at the Winter's) and to watch Cole play flag football. Everyone was so excited to see her out and about and are just amazed that they are actually looking at her in person! Another one of her firsts that is up and coming is to see the ocean. Yes folks, the Dean's are going on vacation!!!!!! The whole family will be headed to South Carolina and will be enjoying time together playing in the sun, sand, and water. We will also be meeting with some VERY special people down there too! ;-) I think y'all can guess who that is!! I am so excited, I can't stand it! I get emotional thinking about it. All of us heart families have been through so much and when we get an opportunity to actually meet them face to face, well, I just can't express to you how much that means to me. Of course I will be updating while we are away, so don't worry ;-)

Thank you from the bottom of our hearts for all of your support throughout this adventure and we hope to continue to share with you all of Lindsay's progress. God Bless each and every one of you!

Heart Blessings and Love,



Anonymous said...

Hello..It's Marina (Nicko's Mom) I'm so glad to see all the first things...Miss Dean is such a miracle! Nicko is finally home and started pt-ot-st were hoping to be able to try to feed again. How is the g-tube going?

Jane said...

Hi ... not sure I've posted before, but I've faithfully followed and prayed!

Having written "that letter," there's never a right time. However, its amazing to not have it hanging over you, wondering when and what to write. At least, it was for me.

And, the donor family might not even choose to read it. Once you write it, its up to them to choose the right time to read it.

Good luck writing it ... and continued wishes for miracles and blessings!

ShannonLeideker said...

Lindsey is truely a miracle! I have prayed so hard for your daughter. I am so happy she is thriving at home. I'm glad that your family is able to finally live a more "normal" life. You are so upbeat and positive...such an inspiration to your readers. Thank you for updating! God Bless!

The Simmons Family said...

That post just put a SMILE on my face! I am amazed at how well the princess is doing. I remember that day a year ago, transplant is such a scary word. It's almost been a year since we were told Owen would need a transplant and look at how far he is now, still not even listed. God works in miraculous ways!! I love to hear all of Lindsay's first and can't wait to see pictures of ya'll on the beach with the Butchers!

Have a safe trip!

Anonymous said...

Hey Suzie--
Boy "the letter" dilemma. I am still wrestling with it after 8 years. Do you say how much your child is doing, knowing that their child is not? Holidays never seem right and anniversary dates never seem right. Some random day will finally feel right. I wish you the best with it--I hope you get a response from your family. It would bring peace of mind to know that they were truly ok with the decision they made. So happy to see miss princess and the boys! Take care!


Kristin said...

I'm so happy for your family!! :)

Jessica said...

What a beautiful update! We're so thankful for how far God has brought your sweet girl. :) Have a wonderful trip!

Michelle said...

HAPPY BIRTHDAY, COLE!!! The pictures are precious. Don't you just love to watch Lindsay playing (and watching TV) with her brothers? So adorable!

When are you leaving for vacation? Soon? Have a safe and exciting time, and take and post lots of pictures! Send the Butchers lots of heart hugs from us here in the heartland! Have the time of your lives!

We're praying that this coming year holds lots of GOOD excitement for the Deans and your special Princess.



Evie's Story said...

So happy for your family to have this trip to look forward to. I cant believe she's ready for how far she's come! You will LOVE Charleston! Happy Birthday to your sweet boy!

Katie said...

Wow! What an amazing little gal you have there :) You have much to be proud of...

And I'm THRILLED you get to go to S.C.!!! Can't wait to hear all about it with pictures too. Give them hugs from us too and have a wonderful trip. You guys surely deserve it!

Tommy Schomaker said...

Many, many hugs coming from Tommy to Lindsay!
Oh my, I so know where you are coming from with every single word you write. I too have been thinking a lot about our donor family and I have tried to do the letter and it's just not going well..sigh. I have barely taken all of this in yet, I think. SO many come up to me/us daily shaking their heads in disbelief. I don't know what to say..they ask me if I cry everytime I see him do something..I say 'no' and then feel bad..LOL! He has really opened up some new 'emotional' cans for me lately that have been rough. Can't blame's been a very sudden shift from the sickest one can be to suddenly feeling great! I have been wanting to update the carepage, but can't find the words.
Maybe soon. (Mike and I are leaving the kids and getting away for a long weekend...flying..aaahh!, it's his 40th bday and I'm surprising him)
Hope to see you soon?! Hearts of Hope is having their Fall party end of Oct. but it's a drive I know!
Love, Hugs and MISS YOU!
The Schomakers'

Kyle Keiser said...

So happy for all the news and all the "firsts". The boys are precious and will be amazing young men because of the lessons of Lindsay. Enjoy, deserve soooo much!

Always hugging and loving,