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,

Suzie

Tuesday, September 15, 2009

Home.....

A preview of last nights photo shoot with Patti! More to come in a few weeks! YEAH! i could just cry.........SO HAPPY!!!!!!!

Tuesday, September 8, 2009

This and That........

This weekend was definitely fun-filled! JR and I went to the U of M game.....by ourselves might I add, and Sunday and Monday we had a mini vacation at the lake! The boys fished, we ate pizza on the boat (always a hit!) and got to spend quality time with the family. It was a picture perfect weekend to boot! Aunt Marva (Lindsay's great-grandma Lindsay's sister and my great aunt) was able to come out and I got this great picture of the two of them. So sweet. The weekend is not complete without fishin' pictures to show off! This was Cole's bass that he caught. It was only 13 1/2 inches so it wasn't a keeper but it sure made his day by catching it! We tried to put it in this bucket but the fish flew out. We then went to a cooler until we could measure it. ;-)

Now, this scene made me tear up. My baby in her first life jacket and getting ready to go on her first boat ride! WOOOOOHOOOOO!!!!! Thank you GOD! Not a peep came from her on the ride. I'm glad she liked it because there will be much more of that in her future! (mommy and daddy like it too!) And, no Meg, no swimming in the lake! ha ha



Cruz wanted a piece of the action too. This is the bass that he caught.....all by himself!!! It was funny because after the excitement of the catch, he casted again and after about 2 minutes, he said it was taking too long and left the pole right on the dock with the line still in the water! Comedian, this kid! Oh, and he kissed the fish before he let it go. Too cute!



This photo was on game day! Go BLUE!!!!!! (Love the bow blogger friend!)




Rubba Dub Dub. Three little monkeys in the tub! We have waited so long to get this picture. (Um, can you tell that Lindsay hasn't been sunbathing?? ha ha) Yeah, again, crying! We are just overflowing with joy, I can't even describe it! Life is good! (that nose crinkle is for you nurse Jen!)
One other thing I wanted to share with all of you that will probably set you back a little. Our sweet, sweet, almost six year old was talking about his birthday coming up at the end of this month. So, we got into the discussion of what he wanted to do for a party, if he even wanted one. This is how the conversation went......
Mom: " So, Cole. What would you like to do for your party?"
Cole: "Um, I want to have a car show for my birthday." (JR takes Cole to allot of car shows!)
Mom: "You do, huh?" (I'm thinking, now how in the heck can I pull that one off!!)
Cole: "Yeah, you know like some car shows get (he meant to say raise) money and then give it to people? I think we should do that and give the money to the heart babies. You know, like people did for Lindsay?"
Mom: " Oh, Cole! (crying of course!) I love you so much buddy!"
Well, needless to say, the kid "gets it". WOW! If anything, this whole experience has taught him that giving is a wonderful thing and that people really appreciate it, as we do today. To all of you, you had a hand in teaching Cole how to give. This is a lesson that will stick with him for a lifetime and we are so grateful for that. So, next year, mark your calendars that sometime in the fall, we will be doing a fundraiser for heart babies at Mott and the event will be a car show per Cole's request! I want it to be HUGE so committee, get your thinking caps on and as Ty Pennington says, "Let's do it!!!!"
OK, now that you have wiped the tears away, I have one last item for this post. I got "The bill" today...........
293 days room charge: $791,047.00
Pharmacy: $122,678.20
IV solutions: $53,390.20
IV Therapy: $190.00
Medical-surgical supplies: $467,056.00
Sterile supplies: $13,795.00
Take Home supplies: $26.96
Pace Maker: $2,246.00
Laboratory: $361,805.00
Pathology Laboratory: $313.00
Diagnostic x-ray: $21,462.00
Nuclear Medicine: $1,109.00
Cat Scan: $2,466.00
Operating/Treatment RM: $115,678.00
Anesthesia: $23,052.00
Blood Storage Processing: $16,823.00
Imaging Services: $506.00
Respiratory Services: $61,154.00
Physical Therapy: $9,690.00
Occupational therapy: $6,990.00
Pulmonary Function: $62,622.00
Cardiology: $83,835.00
MRI: $3,206.00
Recovery room: $919.00
EKG/EEG: $4,557.00
EEG: $5,775.00
Organ Acquisition: $80,000.00
GRAND TOTAL: $2,312,388.36
One happy baby at home in our arms, PRICELESS!!!! God is good!
Now, I thought long and hard about posting this and it is just on here to show what it took to keep our baby! In our eyes, no matter how crazy the cost may seem, the total number will never matter. Even if we had to pay this out of our own pocket (good luck with that by the way! ha ha), we wouldn't change a thing! No matter what we went through, what she went through, and how long it took, that number will never matter. We have our baby thanks to the medical staff, all of you, and God, WE HAVE OUR BABY!!!!!
That post tuckered me out! More photos to share soon and more of an update on the princess.
Heart Blessings~
Suzie