Friday, May 29, 2009

Giving back........

I have been asked some questions about Lindsay's party that I would like to answer for all of you. Those of you who wish to donate to an organization in lieu of a gift, here are a few ideas. The ones that have touched my heart from day one are the ones in memory of Taylor Grainger. I have updated the icons on the right and there are three new ones. One is Make-A-Wish foundation. The money donated would go towards making a sick child's potential last trip with their family a memorable one. All expenses are paid and would relieve the financial strain on the family to make this happen. A wish should be granted for any prince or princess!!! The second is the Children's Hearts Fund. The money raised here goes towards the research to finding the cure for PLE and the cause of it. This is what Taylor struggled with for about the last 4 years or so of her life......and Ethan Bilpo too for the last year of his. The third is for Team Taylor. This is an organization started by her father, Rob. He and his wife, Karen, have a true passion for what they are doing and feel so strongly about each of the above charities. Team Taylor has grown tremendously and this year's ride will consist of 80 riders or more to raise money for Make-A-Wish. Click on the icons to read about Taylor and what her legacy has taught us. She is "Walking Tall" in heaven and so very proud of all that have participated in making dreams come true for our fellow heart families. If you have questions on how to donate to any of these organizations, please feel free to email me at
Now, please know that ANY organization needs donations, so please don't feel like you have to donate to these. I was asked about my preference and I have a special place in my heart for the above.
Also, good luck to all of you that have purchased cruise raffle tickets. The drawing is TONIGHT and tickets are available up until drawing time which is at 7:30 pm. Thanks again for all of your support and may the one who wins choose to take me as their guest! ha ha ( I am sooooo kidding!!) ;-)
Heart Blessings~

Tuesday, May 26, 2009


Just a reminder that the cruise raffle will take place this Friday night at the Otsego Elks. Your all invited. Dinner will be available for purchase beginning at 6:30pm and I hope lots of you will come out and support the Elks for this dinner as a thank you to them for helping us provide this raffle. We'll be drawing at 7:30pm.

We have some sweet side prizes available: 2 Chicago Cubs tickets and 2 U of M football tickets.
So, your tickets are good for more than the cruise for two on the Freedom of the Seas.

We'll be selling tickets right up until the drawing begins, so if you still want tickets, let us know and we'll be sure to get your ticket stub in the drum for the drawing. Just contact Linda at Tickets are $20.00 each or 6/$100. All proceeds go to the Lindsay Dean Heart Fund. Remember because of you, the Dean's are above water after almost a year with Lindsay in the hospital most of that time.

Heart Hugs to all of you,
The Lindsay Dean Heart Fund Committee

Wednesday, May 20, 2009

Praying for peace for the Bilpo's

It was tough to hold it together this afternoon. In the late morning today, Ethan Bilpo passed away. There was a very surreal feeling in the halls today. Everyone, meaning the nurses, were just devastated to hear the news. I have gotten to know Ethan and Sandy while staying at Mott for frequent visits due to Ethan's PLE. Please pray for strength for the family to be able to get through these days to come. As I mentioned in a few comments on carepages and blogs today........Our hearts are broken, but Ethan's is now whole. We love you kiddo and we sure will miss you!!
Heart Blessings~

Tuesday, May 19, 2009

Praying for yet another Parchment heart baby.

For those of you from our home town of Parchment, you probably know Dodi and Jimmy Leckie. Dodi gave birth to a beautiful little girl yesterday, Sydney, and much to there surprise, Sydney has a severe, yet fixable, heart defect called Transposition of the Great Arteries (Vessels). Of course they were ambulanced to UofM and settling in....I think! I have posted a photo to help explain the problem. The pulmonary artery and aorta are flip flopped and their is a hole between the right and left atrium's. This simply causes the blood to do some mixing that should not be. They will be doing a balloon procedure tomorrow in the cath lab to close the hole but it will take open heart surgery to correct the vessels. I saw Dodi and Sydney this evening in the NICU, and Sydney looks just great. She is not a "blue" baby at all! She is comfortable and praying that she stays that way until surgery. Please pray for the Leckie's as they endure this very scary time in their lives. Now, for an update on the princess. She had a fabulous day! Up until the 10pm feeding, she didn't throw up once and ate her peaches like a champ. She actually ate half of the baby food container of peaches in one sitting. Now, this is definitely an improvement and she even is getting the hang of opening her mouth to take bites! This was such an exciting day for her....and mom! She will finish her IVIG treatment at 2 am and then blood work in the morning to reestablish her baseline numbers after all of treatments over this last week. So, we shall see.

Cole called me tonight after his game and said that he had 3 home runs! ha ha Well, for those of you that know how t-ball works, everyone gets on base and the last batter ALWAYS hits a home run!! ha ha He is batter #1 so they must have hit in reverse order tonight. ;-) Too cute!

On a heavy note tonight, remember the photo that I posted last week of Lindsay visiting her two heart brothers that were in the hospital too.....Ethan and Tommy? Well, Ethan got to go home for one night and then was right back in the hospital on Sunday. He is suffering from an awful disease known as PLE, Protein-Losing Enteropathy. This occurs in 10% of kids that have had open heart surgery and research is still being done as to why this happens. Anyway, sadly, Ethan is loosing his fight and is in the PCTU right now. Things do not look good and I am afraid that his time is running out. I ran into Colleen, Tommy's mom, tonight and she shared the heart breaking news with me. I can't begin to tell you how frustrating this must be for them for Ethan to have gone through all that he has with HLHS and now this is what happens?? Do you remember around the time that Lindsay was born, my mom mentioned Taylor Grainger? Well, Taylor also lost her battle with PLE and was also born with HLHS. This past weekend was the 2 year anniversary of her passing. I know this because this is our wedding anniversary. ;-( Anyway, ever since Taylor passed, we have been a contributor to Children's Hearts Fund to help fund research to prevent and find the cure for PLE. Maybe that can be the donation you make for Lindsay's birthday......I know that it will be mine!
To the Bilpo's: My heart can't ache enough for you right now. Ethan is a true fighter and will always be in our eyes. I know that God is holding you close and will comfort you in these days to come. Taylor will be right there welcoming Ethan, I know it! Sending hugs!
With Love and a heavy heart,

Monday, May 18, 2009

Party at my Castle!!!!

(click to view larger image)
Our precious little princess will be 1 year old on June 11th. Above is the invitation and all who are willing to drive a ways to see her are invited! (NOTE: party is on the 7th!!!) After a long discussion and thinking this through, JR and I have decided that although gifts are customary for a birthday party, we are going to break tradition this time around. So, in lieu of gifts, especially since Lindsay is very limited for space, we have decided to ask that you give in another way. Anyway you choose actually. Whether it is giving blood, volunteering, registering to be an organ donor, or giving a monetary donation to your favorite charity. One simple request is all we have.....please email us or comment under this posting as to what you did to be the ray of sunshine in someones day and/or life. We can't begin to express our gratitude to all of you who have helped, and continue to help, us get through this whole life altering event in our lives financially. We are "above water" because of you!! And the amazing part of this is that you keep giving!! This is so unbelievable and we are humbled. So, please email me if you plan on attending the princess' birthday party. I know it is a far drive for all, but we certainly would love to have you as our guests on the special day.
With Love, Suzie

UPDATE: Lindsay is doing very well after her Rituxin last week and starting yesterday, she is getting her IVIG treatment. They are doing 50cc's over a 12 hour period two days in a row to hopefully prevent any fluid overload issues. So far so good except for a high heart rate last night but before I left for the evening, the rate was coming down very slowly. No calls overnight so that is a very good thing! Today (5/19) is her second day and the next dose will begin at 2pm. Say your prayers that this will help. This time she has CellCept on board so who knows what will happen with all three mixed together! ;-)
Also, Cruz's CT scan came back completely within normal ranges!!! When the ENT told me this at the follow up appointment on Thursday, I could have just hugged him! He knows all that we have going on and I think it would have been an awful thing to have to say something was wrong.....but there isn't! THANK YOU LORD!!!! As Cruz would say, "Whew! That was close!" ;-)

Friday, May 15, 2009

10 years ago..........

On this day, 10 years ago, I married my one true love.
Happy Anniversary, honey!
With all my love,
(looks like my mom is one step ahead of me! Thanks mom!)


I know it's not the Hawaii Trip you planned on for your 10th anniversary, but at least you could be together this weekend and hopefully you can be at the ballpark watching Cole hit a "home run".

Your marriage is certainly a home run!!!

Love to both of you. You're my heros!


Tuesday, May 12, 2009

Eventful Day!

My heart transplant buddy, Tommy. He is here for his Rituxin treatment.
Lindsay, Ethan, and Tommy. Ethan is here with complications due to PLE and his new G Tube. Get better soon Ethan!!!!

Lindsay being stinkin cute!!!!!!

Look Daddy! I like pretzels too! Well, sucking on them anyway. She licked all the salt off of it!

Too precious for words.

Well, after spending the majority of her day puking, Lindsay has been quite the busy body. I was able to take her outside again today and needless to say, she enjoyed it thoroughly! I was able to capture some wonderful photos including her new header photo on the blog. We also had a photo shoot in her crib, but those pictures will have to wait. ;-)
Lindsay had all of her blood draws yesterday to check her antibodies and Lindsay is finally ready for another dose of Rituxin. This will happen tomorrow afternoon and the doctors have also decided to give her another round of IVIG again. The IVIG will be given on Thursday if everything goes well with the Rituxin tomorrow. The BIG news is though the Lindsay is still testing as ABO blood type which means that she can still accept a heart from ANY blood type. This is just HUGE because usually by now, infants have already started producing antibodies against the other blood types and she is not. As a matter of fact, Meg (the nurse transplant coordinator) said that instead of her numbers going up as expected, they are actually going down! What? you say. Yes, this is correct! I do believe that the man above is giving us a sign on this one! Thank you Jesus! (I do think that her angel friends in heaven have a part to play in it too!)
All in all, minus the puking, Lindsay looks wonderful and is just a joy to be around. I am a blessed mother with a wonderful daughter. I couldn't be more proud of her!
Until next time~
Love, Suzie

Sofi's transplant.........

If you would like to view the news cast that includes clips from her transplant, click on the link below to view it. I will forewarn you, it is graphic and you WILL need the kleenex box!

Praying for the Freeman's

Please send prayers out to the Freeman family as they lost their one pound miracle baby yesterday. To read her story, Kayleigh's link is on the blog. They are a very special family that I have grown attached to. Not just because of their miracle, but because of who they are. Please lift them through their difficult days to come.

Monday, May 11, 2009

11 months old today!!!!

I can hardly believe that one month from now, our little princess will be one year old! I have tears in my eyes as I type this because I have so much to say about the one year milestone coming up, but I will save all of that for her birthday post. ;-) Anyway, birthday party preparations have begun and I will post by the end of this week or the beginning of next all of the details of the big event. We love you so much sweet girl and mommy and daddy couldn't be more proud of you!!!

Heart Blessings~

Thursday, May 7, 2009

Update on life in general

First and foremost, Lindsay is doing ok. She has more recent vomiting issues lately that we are trying to figure out, a hemorrhoid because of having so much difficulty pooping, and all of a sudden not nearly as interested in taking her bottle. She will take just about half of it and then push it away. We are very patient with her and then sometimes she will end up taking it all, but when she is just throwing a fit (yes, people you heard right! She is throwing fits now!!) we just end up putting the rest down her NG tube. She does love her baby food, but is still not 100% into eating it. It has been tough getting her to take a bite now, but once we eventually fit it in her mouth, she does eat it and seems to enjoy it. Yes, she is always a mystery but in the meantime, a very happy little princess!

Update on Cruz: We will be taking him in for a CT scan tomorrow morning to see what the heck is making his neck so veiny. (I will try and get a picture of his neck for you and post it) All of this is a result of the Mono that he had in October and the abscess that formed in his neck that was drained. The blood found alternative routes because of the foreign object in the neck and the ENT thought over time that is would get better. Well, it hasn't. In fact, it is more prominent. So, that is on the schedule for tomorrow and we will post the results as we get them for you. Please pray that all he needs is time for the to resolve itself.

Ok, I have been scolded (nicely) by a few as to what is going on with my mom and that I haven't posted anything on her. Well, she has been at the Chelsea Community Hospital at the head pain clinic for the last two weeks to try and see what has been causing her severe headaches that massive amounts of Tylenol will just mask. They did a bunch of different tests and seem to think that they have it narrowed down for her so that medication can control it. Please pray that the meds will help so that she can have a life without any pain. She was released yesterday and is now home and resting giving the meds a chance to work their magic.

Cole has a baseball game on Saturday and then back to A2 on Sunday for me. I hope that all of the special mothers out there have a fantastic day on Sunday. You all deserve it!

Love to you all!


Wednesday, May 6, 2009

And the young woman who made it all happen.......

Allison!!!!! You are simply amazing! I still can't get over how much support that we received from complete strangers. This still blows my mind! Allison, you are a special, wonderful, intelligent, and beautiful young woman. It is an absolute privilege to have you in our lives. You deserve everything that you have worked so hard to achieve and we couldn't be more proud of who you have become. Your momma did good girl! ha ha (and dad, too) ;-)
I would like to ask everyone to help and pray for Allison's safety as she moves on to an exciting chapter in her life. Next week she will be starting her study abroad in Paris and will be there for one month. After speaking with her yesterday, Allison is so excited about getting to see another part of the world and learning how the "big dogs" in marketing do it so well. Hello! The Louis Vuitton store?!! AWESOME!!! Allison attends Michigan State University (yeah, I know......we tried to talk her into U of M....ha ha!) and will graduate in December. Again, we are so proud and we wish her the best. Have an awesome time and don't forget your passport!!!!
Love you bunches!!!

Tuesday, May 5, 2009

Hello! My name is Allison Vanderberg from Lansing, MI and I want to share with everyone a very awesome story. Be prepared to change the way you think about garage sales!

- 1 community
- 5 generous families
- 7 days
- 53 “Pray for Lindsay” bracelets
- 20 homemade hair scrunchies
- 230 cookies
- 58 bags of chips
- 68 cans of pop
- Hundreds of miscellaneous garage sale items


Blessing one very deserving family, and adding Baby Lindsay to so many more people’s prayers…………

It all started with an episode from John & Kate Plus Eight. In the episode I saw, the family put on a garage sale and donated all the proceeds to a cancer charity. I thought what they did was great and was instantly inspired. I remembered some very good friends of mine saying they were planning on having a garage sale in the near future, I decided right then I would join their garage sale and sell my items and donate them all to the Lindsay Dean Heart Fund. My first thought was that I would never be able to do something big and successful like John & Kate Plus 8 (after all I am just ONE person, and don’t have a TV show on TLC) but I thought I could raise a $100 or so for the family….. BOY WAS I WRONG! I may be only ONE person, but I have a BIG God! God took what I had to sell and multiplied it, people donated items and handmade crafts for me too sell too. We also sold cookies and drinks and took donations at the sale. I was blown away by the generosity from so many people who have never met the Dean family and never will. I was touched by each and every person who came to the sale and donated. People constantly told me there were going to put Lindsay on their prayer lists at church, one woman gave half her garage sale money, a woman who works at a hair salon put up a donation jar and sold bracelets, and so much more.

To all of you who came and donated THANK YOU. To all of you who are now praying for Baby Lindsay THANK YOU. To all of you who are now following her story THANK YOU. To all of you who helped me make this happen THANK YOU. I pray that God will bless each one of you, as you have truly blessed one very deserving family.

Luke 6:38
If you give, you will receive. Your gift will return to you in full measure, pressed down, shaken together to make room for more, and running over. Whatever measure you use in giving — large or small — it will be used to measure what is given back to you."

When I was asked at the garage sale why I was doing this, I had a simple answer; I wanted to bless a very deserving family. But when I say that everything we did was to bless one very deserving family, deserving is an understatement. It is hard for me to put into words why I wanted to bless the Dean family. I wanted to bless them for their strength during the most challenging time in their lives, I wanted to bless them for their love for their daughter Lindsay, I wanted to bless them for their faith in God during a time when it has been challenged the most, I wanted to bless them for their courage to press forward, I wanted to bless them for their commitment to their other two children, and I wanted to bless them for their choice. The Dean’s chose life for their daughter Lindsay. They knew before Lindsay was born what laid ahead of them. They knew of the heart surgeries, possible transplant, countless days in the hospital, the financial burden and the difficulty that possibly lied ahead for them, and they chose life for her. This family is going through the most difficult time in their lives, something that most of us could never imagine and THEY FEEL BLESSED. Suzie and Jr do not question why God gave them a baby with a special heart, they say they are BLESSED that God chose them to be the parents of this wonderful baby girl. That alone makes them the strongest and most deserving people I know. Suzie and Jr I commend you for the amazing parents you are to Lindsay, God couldn’t have given her a better family.

And as a final note…. I encourage everyone to never again say “but, I am just one.” God can take a tiny seed and multiply it further than you can even imagine. Be faithful and God can do BIG things!

Friday, May 1, 2009

And the 1st baby food of choice is.............

Green Beans!!!!!!! At my next feeding, I got to try peaches and I think I liked those even better!
She loved that she could do this herself!!

CHEESE!!!! I mean, Green BEEEEEEEANS!!!

Look at my two teeth!

I love to snuggle with my daddy!
What a great day for sure!